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Interpreting Asperger syndrome through an analysis of students'engagement with “majoritarian” narratives

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INTERPRETING ASPERGER SYNDROME THROUGH AN ANALYSIS OF
STUDENTS' ENGAGEMENT WITH "MAJORITARIAN" NARRATIVES
by
Carrie Claudine Snow
Dissertation Committee:
Professor Alicia Broderick, Sponsor
Professor Lynne Bejoian
Approved by the Committee on the Degree of Doctor of Education
Date
HAY 18-2010
Submitted in partial fulfillment of the
requirements for the Degree of Doctor of Education in
Teachers College, Columbia University
2010
UMI Number: 3424967
All rights reserved
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2
© Copyright Carrie Claudine Snow 2010
All Rights Reserved
ABSTRACT
INTERPRETING ASPERGER SYNDROME THROUGH AN ANALYSIS OF
STUDENTS' ENGAGEMENT WITH "MAJORITARIAN" NARRATIVES
Carrie Claudine Snow
In scholarly literature, narratives about Asperger Syndrome (AS) with
particular regard to schooling overwhelmingly rally around the social,
communicative, and emotional deficits that students so labeled supposedly
experience. It is rare, in this realm, to encounter narratives that position these
students as competent and able. Likewise, the perspectives of students labeled with
AS are typically absent in academic literature, despite acknowledgments that their
perspectives hold value for enriching and strengthening the quality oftheir
experiences in school.
In response to these issues, this interpretivist study engages a Disability
Studies (DS) perspective and employs qualitative methods to gauge the perspectives
ofthree high school students labeled with AS. Specifically, the study addresses
participants' interpretations of issues that bear meaning to their lives and identities as
adolescent students. In the process, the study highlights instances wherein students'
actions, insights, and other forms of representation constitute "counter narratives" to
common, dominant, or "majoritarian" narratives that are prevalent in scholarly
literature and reified in classrooms and schools. In highlighting counter narratives,
the study aims to broaden essentialist and simplistic deficit-based conceptions about
what it "means" to be a student labeled with AS. Features that the participants
collectively represented as significant and meaningful to their school experiences
reflect ideas that are commonly discussed in literature on general education, such as
engaging struggle as a way to foster growth beyond one's current capacities and
employing a variety of participatory structures and modalities in the process of
learning. Implications for these meanings include cultivating three points of
educational practice that support students' meaningful, equitable engagement in
school: a) promoting educational democracy; b) assuming the role of
researcher/ongoing data collector; and c) differentiating instruction. Implications for
further research include co-authoring scholarly work with individuals labeled with
AS.
INTERPRETING ASPERGER SYNDROME THROUGH AN ANALYSIS OF
STUDENTS' ENGAGEMENT WITH "MAJORITARIAN" NARRATIVES
by
Carrie Claudine Snow
Dissertation Committee:
Professor Alicia Broderick, Sponsor
Professor Lynne Bejoian
Approved by the Committee on the Degree of Doctor of Education
Date
MAY 1 8 2010
Submitted in partial fulfillment of the
requirements for the Degree of Doctor of Education in
Teachers College, Columbia University
2010
For my parents
Eugene Snow
(1925-2002)
and
Gregorie Snow
4
ACKNOWLEDGMENTS
I owe many thanks to a number of people who have supported my work on this
dissertation. First, without Victor, Alex, and Susan, this study could not have come into
being. These individuals' engaged participation infused the work with vitality and it is
my foremost hope that their collective "stories" will benefit the schooling experiences of
others. Likewise, I could not have proceeded with the study without the permission and
cooperation of the high school administrators and faculty.
My committee members, Alicia Broderick, Lynne Bejoian, and Kala Naraian
enriched the process and product of this endeavor through their thoughtful, critical
insights. Alicia facilitated my ability to reach beyond what I had initially expected of
myself, and in the end, helped me come "full circle" to realize the dissertation I wanted to
write. As she once pointed out, overseeing one's progress through dissertation-writing is
a form of "midwifery." While I understood the relevance of this sentiment throughout
the journey, it especially resonated during the final months and weeks of writing, when
Alicia's comprehensive, speedy feedback was crucial. I am grateful for the committed
attention she gave my work all the way through, and markedly so during that final push.
Lynne' s perspective both enlivens me and prompts me to consider new angles and
vantage points from which to consider the significance of my writing and teaching
pursuits. Her optimism, humor, and creative pragmatism have, over the years, reminded
me that there is far more to being a doctoral student than solely writing a dissertation. In
my time at Teachers College, I have found a haven in Lynne' s mentorship, collaboration,
and friendship.
I believe I have learned to be a more attentive researcher as a result of the
questions that Kala has asked and the suggestions she has offered. Pushing me to "listen"
closely to participants' words and ideas and challenging me to consider diverse ways of
interpreting my data are two important ways that she has stretched my capacities.
I likewise extend thanks to Linda Hickson, the fourth member of my dissertation
defense committee. Linda respectfully regarded my work with a sense of inquisitiveness
that spurred my engagement with complex issues that I continue to consider.
Kim Reid in large part swayed my decision to venture east in the first place.
From Santa Cruz, California, I wrote to her about her research and when to my surprise I
received a response from her some weeks later, I was both struck by the time she took to
reach out to me and compelled to pursue the possibility of doing my graduate work with
her. Kim has indelibly imprinted my professional life, and I continue to "unpack" the
many lessons she shared prior to her retirement. I additionally recognize Jan Valle and
David Connor for providing stellar examples of teaching and for generously acting as
mentors throughout my graduate work and professional life.
A handful of close friends supported my work often by helping me attend to other
facets of my being. I thank Ingrid and Jim Brommers Bergquist, Jean Wong, Debra
Monesmith, Behnosh Najafi, Sarah Newton, Micah Bishop, Remy Ricards, Maria Holt,
and Gina Marinelli for either commiserating with me about the more difficult aspects of
the doctoral experience or by offering necessary moments of respite from that reality.
My deepest gratitude goes to my family for their enduring interest in seeing me
reach this goal. My in-laws, John and Elaine, contributed numerous babysitting hours in
the final months of dissertation writing. Without Elaine's willingness to fly across the
6
country on short notice, I would not have been afforded the stretches of uninterrupted
time necessary to meet deadlines.
I credit my immediate family for many of the values I hold closest to my heart.
My father was the first researcher I knew, and watching him absorbed in his work piqued
my interest in doing research from an early age. My mother's sense of compassion and
incalculable generosity are qualities that I aspire to. Both believed in my abilities from
day one, and without that truth, I would not be where I am today. My sister, Leeanne
Mavar, is continually supportive and proud of her little sister; my brother Greg and sisterin-law Terrie, always interested in the status of my progress.
Finally, my (very patient) husband Dave Napolitan cheered me on and celebrated
all of the small victories along the way. His companionship anchors me, and his optimism
and sense of adventure energize me. My daughter Sabine has provided me with ample
opportunity to veer from writing since her birth a year and a half ago, and in doing so, she
has revitalized my life in profound, heartfelt ways. Sabine's constant nudges to attend to
all that is immediate and Dave's abundance of spirit have added life to the years I have
contributed to this project. My family is my fortune, and I thank them from the bottom of
my heart.
CCS.
7
TABLE OF CONTENTS
LISTOFTABLES
15
LIST OF FIGURES
16
Chapter I-- INTRODUCTION
17
Roots of the Study
18
Statement of the Problem
20
Deficit-Based Narratives on AS and Student Identity
24
Deficit-Based Narratives on AS and Educators' Perceptions
25
Forces that impede educators' ability to see students labeled with AS holistically.
............................................................................................................................... 30
Student Perspectives in Scholarly Research
34
Interpretivism and Disability Studies (DS)
36
Purpose and Rationale for the Study
37
Significance of the Study
40
Dissertation Outline
41
Chapter II- REVIEW OF RELEVANT LITERATURE
44
The Original AS Narrative: Hans Asperger
47
The DSM and Majoritarian AS Narratives
49
Theory of Mind (ToM)
52
The Narrative of the Z)SM Reified in Scholarly Work
54
Issues that Prompt Approaches of Support
55
Approaches to Supporting Students' Navigation through School
56
Behavioral approaches
56
Narratives scholars reify in discussions about behavioral approaches
59
8
Collaborative and structural approaches
61
Narratives scholars reify in discussions about collaborative and structural
approaches
64
Self Representational Work
66
Works Authored by Individuals Labeled with AS
67
Fleisher
67
Jackson
70
Shore
72
Willey
76
Strength, capacity, and a "way of being": Countering majoritarian AS narratives.
............................................................................................................................... 79
Autism Rights Committees, Organizations, and Online Forums
81
Attending to the Chasm: Biklen et al. 's Autism and the Myth ofthe Person Alone
82
A Return to Scholarly Work on AS and Schooling: Glimpsing Counter Narratives.... 85
Casting Interests as Strengths
86
Resisting "Policing" and Being Defined in Deficit Terms
88
Illuminating how Students Define what is Right for Them
90
Eight Majoritarian Narratives
92
Paradigmatic, Conceptual, and Methodological Parallels
98
Chapter III-- METHODOLOGY
104
Paradigmatic Orientation
104
The Participants
107
The Schools
,
109
9
Negotiating Entry
109
Data Collection Strategies
111
Participant Observation
113
Interviews
116
Artifacts
119
Reciprocity
120
Strategies of Data Analysis
121
Multiple Case Analysis
126
Presentation of the Findings
128
Limitations of the Study
129
A Final Note on the Interpretive Process
132
Chapter IV-- SUSAN
Susan's Participation: "I Refuse to Be Anything Other Than Myself
135
138
Academic Classes
139
Drama Classes
140
Beyond Classroom Walls
142
Lunch hour
142
Final performances
144
Susan's Stories and Representations of Life in School
145
Comfort: ". . .If You Just Stick to Where You're Comfortable You're Not Really
Going to Grow As An Actor or As A Person"
146
Personhood: "I Like Teachers That Can Be People at the Same Time"
149
Journalism
150
10
Government
150
Math
151
Creativity and Relevancy: "I Like the Creativity... I Like That I Could Take
Something That I Was Learning and Compare It to Modern Things That Are A Part
ofMy Life"
155
Politics
156
Book sequence
157
U.S. History project
165
Temple Grandin journal
168
"God must have spent a little less time on you"
174
Opportunities and Goals: "Fm Definitely Going to College"
180
Auditions
181
Rehearsals
183
College preparation
184
Susan's Adolescent Identity: A Summative Discussion Engaging Three Lenses
189
Peer/Friend
190
Student
192
AS/Disability
193
Chapter V-- ALEX
200
Alex's Participation: "With Most People I'm Grouped with, All Hell Breaks Loose"
..................................................................................................................................... 204
In Classes
204
In Between Classes
208
11
Alex's Stories and Representations of Life in School
212
Interest: "It Could Be Incredibly Interesting... Don't Take This Literally but You
Know Not Everybody Likes Apple Pie"
213
Fazing out and multitasking
214
Lunchtime, Art, and Study Hall
217
Power and Respect: "You Don't Have to Have Respect to Be Powerful. And Vice
Versa"
228
Humor: "I Know It Was Sheer Terror and It Was Scary but from My Point of View
It Was Funny"
236
Antics that prompted peers' reactions
237
Teacher A
239
School work
241
Fear: "...Facing Your Fear... Either Makes [You] Not Afraid of What [You] Were
Afraid of Anymore, Or It Completely Scars [You] for Life..."
243
The early years
244
Present years
245
Alex's Adolescent Identity: A Summative Discussion Engaging Three Lenses
248
Peer/Friend
248
Student
251
AS/ADD/Disability
257
Chapter VI-- VICTOR
261
Victor's Participation: "[By Wednesday], I Start to Think about How the Week's
Going by so Fast. . .That's What Gets Me Excited"
264
12
In Classes
265
In Between Classes
268
Victor's Stories and Representations of Life in School
Balance and Variation: "One Half, My Mind Is Busy, The Other, It Parties"
270
271
Independence and collaboration
272
"Freedom" from structured seatwork
273
Home and school
275
Creativity and Imagination: "Well... It's I Think The Greatest Essay I've Ever Made
up. It's Uh, Possibly The Coolest Thing I've Probably Done"
278
Transformer illustration
278
Jean-Michel Basquiat
283
Writing
284
Struggle: "I Get Ticked Off so Easily. I Just Don't Know How I Can Handle It". 290
Socialization
291
Respecting others
293
Negotiating frustration
295
Entertainment: "...It' s A Gift... Gm like A God of Laughter"
298
Scene reenactments
299
Singing
301
Victor's Adolescent Identity: A Summative Discussion Engaging Three Lenses
303
Peer/Friend
303
Student
306
AS/Disability
311
13
Chapter VII-- MULTIPLE CASE ANALYSIS, DISCUSSION, AND IMPLICATIONS
......................................................................................................................................... 313
Multiple Case Analysis
314
1. Social Engagement
314
2. Imagination and Creativity
316
3. Humor
317
4. Participatory Preferences
319
5. Relevancy
321
6. Taking the Perspective of Others
323
7. Emotional Engagement
325
8. Engagement of Interests
327
Discussion: Engaging in High School with a Label of AS
329
Integrating Interests
331
Learning Through Trial and Error
331
Asserting Competencies
333
Offsetting Boredom and Predictability
335
Engaging Struggle
337
Employing Multiple Participation Structures, Strategies, and Methods
339
Implications of the Research
342
Contribution to the Literature
343
Possibilities for Future Research
346
Investigating inclusive contexts, out-of-school contexts, and students with diverse
demographic backgrounds
346
14
Collaborative research
349
Implications for Practice
350
Educational democracy
350
Teacher as researcher, as data collector
353
Differentiating instruction
354
REFERENCES
358
Appendix A: Diagram of Student Involvement in IEP (Shore, 2004)
369
Appendix B: Field Notes Template from Marshall and Rossman (1999)
370
Appendix C: Informed Consent
371
15
LIST OF TABLES
Table 1 . Eight Majoritarian Narratives and Source References
94
Table 2. Eight Majoritarian Narratives Emanating from DSM-IV-TR Criterion
97
16
LIST OF FIGURES
Figure 1 . Susan's Forensics Project on HPLC
159
Figure 2. Susan's U.S. History Project
1 67
Figure 3. Pages from Susan's Temple Grandin Diary
169
Figure 4. Susan' s College Essay
195
Figure 5. Alex's Methamphetamines Story.
224
Figure 6. Alex's "Wanted" Project Completed in Computer Art Class
241
Figure 7. Pages from Alex's History Exam
254
Figure 8. Victor's Transformers Drawings
279
Figure 9. Victor's Story, The Jack Chronicles
286
Figure 10: Victor's Idioms Quiz
308
17
I-- INTRODUCTION
In this qualitative study, I engage an analysis of narratives about Asperger
Syndrome (AS): those that are rooted in a clinical definition, disseminated in scholarly
and popular literature, and those that surface within particular organizations and online
communities. Conceiving of narratives as "a means by which human beings represent
and restructure the world," (Mitchell, 1981, p. 8, as cited in Cortazzi, 1993, p. 1) I attend
to the assumptions embedded within these representations, and discuss how they
contribute diverse (and often conflicting) ideas about what it "means" to be labeled with
AS. In the process, I identify narratives that are dominant within the realm of scholarly
literature and which, by informing the perspectives of educators, subsequently bear
significance on the quality of schooling experiences for students labeled with AS. An
analysis of AS narratives foregrounds my interpretations of the schooling experiences of
three adolescent students labeled with AS, which spur from an engagement with the
following research questions:
1 ) What does it mean to be a student labeled with AS?
a) In what ways do three adolescent students labeled with AS participate in
school?
b) In reflecting upon their experiences participating in school, what issues do
three adolescent students labeled with AS identify as meaningful to them?
c) In representing meaningful issues, what stories do three students labeled with
AS tell and contribute?
18
2) How do three adolescent students labeled with AS integrate various facets of
experience such as their personal histories, current and enduring interests, and
perceptions of self to inform their evolving identities?
In addressing these questions, I employ data collection strategies that are
ethnographic in nature and traditional to qualitative research. That is, I engage in
participant observation and in-depth interviews with the students and collect educational
artifacts (Marshall & Rossman, 1999). The impetus to attend to these research questions
in many ways has roots in a particular conversation that I had with one of the participants
during the pilot study stage. In the following section, I discuss the implications for this
conversation on my thinking and on the goals that I pursue in this dissertation.
Roots of the Study
Alex : . . . [I] play videogames with the rest [of my friends]. They say it distracts social
time, that it makes it hard for kids to socialize. It does the opposite.
Carrie: It does the opposite. Tell me about that.
Alex: Well, they can link wirelessly; it's a function with the machine that allows two
machines to link with no wires. Kids spend more time with each other if they can
play each other on a game.
Carrie: . . .Have you had a chance to explain that to the teachers?
Alex: Yeah. They're pretty pissed but we still do it anyway.
In this excerpt, Alex, a young man who is labeled with AS, describes his favorite
lunchtime activity: playing videogames. In doing so, he illuminates his ability to engage
flexibly, creatively, and with an astute understanding of others' perceptions. Interestingly,
and as I discuss in the pages and chapters that follow, the qualities that Alex
1 All names have been changed.
19
demonstrated in this excerpt counter common conceptions about what it means to be
labeled with AS. In light of the incongruence that Alex represented, this dissertation
began to take shape. Importantly, the novel way in which Alex conceptualized what it
means to socialize awakened a realization that given the opportunity to discuss the
meanings they attribute to school experiences, students can demonstrate the relevant
ways they respond to circumstances that arise and expand the meanings of what it means
to be labeled with a disability.
In their observation that "education is the construction and reconstruction of
personal and social stories," (1990, p. 2) Connelly and Clandinin acknowledge the
integral role that stories, or narratives, play in the lives of students and teachers. In
pointing to the constructed (and reconstructed) nature of storytelling, they allude to the
human potential for interpretation: that is, in the act of story "reconstruction," educators
and students can reiterate established stories or they can initiate new meanings in the act
of reinterpreting the story. In this study, I look at both of these phenomena, instances of
reiteration and reinterpretation, in efforts to understand how particular AS narratives have
come to be a mainstay in scholarly literature and reified in classrooms and schools, and to
evoke a movement beyond essentialist conceptualizations of students so labeled. In
doing so, I borrow from Solórzano and Yosso (2002) in conceptualizing common cultural
narratives of AS as "majoritarian" stories (p. 29), and those that disrupt majoritarian
renderings as instances of "counter storytelling" (p. 23). Mitchell and Snyder (2000)
conceive of counter stories as "poetical and narrative efforts that expand options for
depicting disability experiences" (p. 164). I too consider counter narratives (or instances
of counter storytelling, such as that highlighted in Alex's excerpt) to be fruitful in that
20
they can expand simplistic conceptualizations of what disability, and AS in particular,
"means."
Solórzano and Yosso (2002) use counter storytelling in critical race methodology
as a way to disrupt majoritarian narratives about race. While the authors note that counter
storytelling "offers space to conduct and present research grounded in the experiences
and knowledge of people of color" in order to disrupt popular narratives about them (p.
23), the use of counter storytelling can be an equally important tool in efforts to disrupt
essentializing narratives about disability. While Solórzano and Yosso' s (2002)
participants share narratives that serve to challenge dominant narratives around race, this
study's participants, through their actions and representations of life in school, can
challenge prevalent notions of what it means to be labeled with AS. I briefly discuss the
seeds from which dominant cultural narratives on AS emanate, in light of the twofold
problem that this study addresses.
Statement of the Problem
First, in the scholarly literature on AS and schooling, students labeled with AS are
primarily defined in terms of what they cannot do. That is, they are represented in
majoritarian narratives that stem from the medical and psychological communities in
terms of an array of assumed inabilities. These interpretations filter to the school and
classroom levels as well, since teachers (particularly special educators) work within a
field that takes direction from psychology and medicine. This first part of the problem
has two significant implications for students' engagement in school. Defining students in
terms of what they apparently cannot do a) works against students' ability to formulate
21
healthy identities (primarily meaning to integrate one's competencies into a conception
of oneself), and b) in conjunction with other forces that educators contend with, makes it
difficult for educators to understand students in their complexity, and thus contributes to
a primary focus on remediating students' perceived weaknesses as opposed to engaging
more holistic pedagogical practices that recognize and integrate students' strengths and
competencies. Indeed, Heshusius (1989) describes this phenomenon in her description of
"the Newtonian mechanistic paradigm" (p. 403) which refers to the ways in which, in the
tradition of positivist science (which historically has engulfed the disciplines of
psychology and medicine), school systems stratify and measure student differences in
ways that work against holistic understandings of them.
The second part of the problem that this study addresses is that within the
scholarly literature on AS and schooling, the perspectives of students labeled with AS are
rare. The importance and value of gauging students' perspectives is illustrated in the
interview excerpt with Alex; namely, students can offer insights into their actions and
states of mind that constructively complicate common understandings of what it means to
be labeled with AS. Constructively complicating what AS means can enable educators to
understand students so labeled in terms of what they can do, and thus cultivate learning
experiences that reflect and build on their competencies. Integrating competencies into
learning can help educators construct relevancy in classrooms and schools; that is,
attending to students' abilities and interests can enable educators to foster learning
experiences that bear meaning to students' lives. Thus, attending to students' perspectives
in scholarly research represents a step toward the enactment of equitable and democratic
pedagogical practices.
22
The idea that AS signifies a series of deficits is, as I thoroughly discuss in chapter
two, firmly rooted in the definition for AS in the American Psychiatric Association's
Diagnostic and Statistical Manual of Mental Disorders (DSM). Much of the DSM
conceptualization of AS stems from early writings about autism and characteristics
associated with AS by psychiatrist Leo Kanner (working in the U.S.) and pediatrician
Hans Asperger (working in Austria), respectively (Pearce, 2005). Generally understood
as a subset of the broader autism construct that centers on supposed social deficits, AS is
a classification named after Asperger, who in 1 944, described children behaving akin to
professors in their extensive and seemingly exclusive elaboration on favored topics of
interest. These children shared characteristics with those described as autistic in parallel
(1943) writings by Kanner (Wing, 1991). Kanner's descriptions of autistic children
highlight an absence of reliable speech, whereas Asperger described children who used
speech with facility. Though there are considerable degrees in between these contrasting
positions on the autism "spectrum," as the category is broadly referred to in scholarship
and in practice (Wing, 2005), the use of reliable speech is generally associated with "high
functioning" autism. By virtue of facility with reliable speech, along with perceived
deficits primarily contained within the realm of social interaction, those labeled with AS
fall on the "high functioning" end of the proverbial spectrum of autism. It is important to
note that though the "high/low" dichotomy of functionality does indeed exist in the
discourse of autism and AS, autobiographical representations (e.g. Bissonnette, 2005;
Frugone, 2005; Rubin, 2005) of individuals living without the use of reliable speech as
well as scholarly research with individuals who, if using the spectrum metaphor, would
be considered "low functioning" (e.g. Rubin, Biklen, Kasa-Hendrickson, Kluth, Cardinal,
23
& Broderick, 2001) have provided counter narratives to the notion that lack of speech
represents absence of intellectual competence. Likewise, Amanda Baggs, a woman who
identifies as autistic, has shared her articulate ability to communicate on internet-based
videos (YouTube), although she does not speak with facility (WoIman, 2008).
As I share in the following chapter, the DSM conceptualization of AS also differs
in many qualitative ways from Asperger's original descriptions, which portrayed
individuals in terms of their competencies and potential in addition to the difficulties they
faced. While a fuller analysis of the DSM definition unfolds in the next chapter, I share
an abbreviated version of the classification criteria for AS here, as stated in the current
version of the DSM(DSM-IV-TR, 2000):
A) Qualitative impairment in social interaction..., B) Restricted repetitive and
stereotyped patterns of behavior, interests, and activities..., C) Clinically
significant social, occupational, or other functioning impairment, D) Absence
of a clinically significant general language delay, E) Absence of a clinically
significant delay in cognitive development or in development of ageappropriate adaptive behavior (other than social interaction), self-help skills
and childhood curiosity about the environment, and F) Failure to meet
diagnostic criteria for schizophrenia, or for other types of pervasive
developmental disorders. (American Psychiatric Association, [DSM-IV-TR],
2000, p. 84)
Framed within medical model prose, individuals labeled with AS are overwhelmingly
represented as deficient in a variety of ways stemming from social inabilities. They are
thus reduced to what they supposedly cannot do, and therein are positioned as
constitutionally damaged. In specific regards to schooling, scholars regularly reference
the first two criteria when discussing significant issues that these students contend with.
Narratives related to students' assumed inabilities a) to socially interact in appropriate
ways and b) to engage flexibly and to veer from specific patterns of behavior are reified
extensively throughout the academic literature on AS and schooling. As I assert
24
throughout this dissertation, the implications for perceiving students in terms of deficits
that emanate from this primary narrative has implications for students' identity
construction, and for educators' ability to understand students in terms of their
complexity. I discuss each of these implications in the following section.
Deficit-Based Narratives on AS and Student Identity
Danger lies in interpreting students' modes of engagement as deficient, or
aberrant from acceptable behavior. Reactions to divergent participation styles that do not
affirm students' contributions can result in a sense of othering (Charlton, 2000; Fine,
1994), of positioning students in a marginal role. It is clear that the stigma that is part and
parcel of being perceived as "different" can carve an indelible imprint on a young
person's burgeoning identity (Humphrey & Lewis, 2008; Jackson, 2002; Williams,
1992). Interpreting observable behaviors as "different" (wherein difference is interpreted
as deficit) threatens students' ability to be seen as competent because in time, "The act
itself ceases to be condemned in simple terms; instead, it is an estimation of the student
which is made" (Thomas & Loxley, 2001, p. 54).
Along with the potential for stigmatization, there are other concerns tethered to
understanding students labeled with AS in terms of assumed deficits. Whether a student
steadfastly elaborates on a singular topic of interest, or does not appear to consider the
social ramifications of the things they say and/or do, their peers and teachers are likely to
view them as disconnected from the environment (see Grandin & Scariano, 1986).
Unconventional modes of expression are clearly undervalued in classrooms and schools;
certainly, they are often interpreted as deficits in need of modification (Biklen, 2005;
Kliewer, 1998; Mirenda, 2003). This is important to note when considering that the
25
narrow focus on observable and seemingly burdensome behaviors of students labeled
with AS eclipse the meaningful connections they may be making with curricula. Again, I
refer back to Alex's conceptualization of what it means to socialize to illustrate the point
that despite others' (his teachers') ideas about his ability to engage appropriately, he
articulated that he was indeed connecting socially with others.
While students' formation of a healthy identity is at stake when deficit
conceptions of AS are reified in classrooms and schools and thus taken for granted as
"truth," in conjunction with other forces that they contend with, deficit conceptions also
impede educators' abilities to understand students in terms of their complexity. This in
turn positions educators as compromised in their ability to construct equitable and
democratic learning experiences for students labeled with AS. I discuss these issues in
the next section, which are informed by my experiences as an educator and supervisor as
well as my experiences as a graduate student engaged in critical thinking about issues of
disability and marginalization.
Deficit-Based Narratives on AS and Educators' Perceptions
The realization that deficit-based conceptions of students labeled with AS color
students' experiences and educators' abilities to understand students holistically evolved
from two primary sources of experience. One source of this understanding comes from
practice: that is, my experiences as a special education teacher and supervisor of student
teachers, the majority of whom worked in inclusive classrooms and schools. The other
source of this understanding comes from my studies: that is, my engagement as a
graduate student in discussions and readings about forces that work against educators'
abilities to construct equitable, relevant, and democratic learning opportunities for many
26
students, including those labeled with disabilities. I discuss each of these facets,
beginning with a description of some of the circumstances of my former position as a
special educator in a large, metropolitan hub of the Northeastern United States:
As an elementary and middle school teacher in a small, private school for
students labeled with autism and AS, my students' creativity, vitality, and
imaginative capabilities were striking to me. In our classroom of students labeled
with AS, exceptionalities abounded. Keen interests of vast diversity colored the
landscape and set the tone for a seemingly infinite number of curricular
possibilities. Kareem's intense interest in weather systems found its way into our
morning routine, where the weather was tracked using weather.com, recorded on
a chart and periodically averaged; Logan's desire to discuss the latest
development in his personal fashion sense fostered his growing verbal and written
articulation skills. Sean's unflinching commitment to recycling punctuated our
weekly science curricula with trips to the local recycling center, while Juan's
theatrical take on what in some ways might be considered mundane daily routines
led to dramatic representations of his weekly current event reports, read-aloud
activities, and so on.
Though my previous students' interests and proclivities may seem
expected of any diverse group of students, they were not viewed as such by many.
Our particular classroom worked to cultivate the idea that distinct interests were
valuable to all of our experiences as a learning community. However, students'
divergent modes of expression and interest were met with corrective eyes by
many of the school staff, as evidenced by the social skills curriculum at the
27
foundation of the school's philosophy. The school's deficit orientation mirrored
that of the local community and larger culture, where on occasion I was stopped
on the street by adult community members asking me, presumably in response to
my students' outward appearances, "What is wrong with your students?" Indeed,
normalizing judgments (Foucault, 1972)—as manifest in the cultural discourses
and expectations that adhere to standardized, narrowly articulated, and limited
conceptualizations of normality- mediated both the content of and the context for
school and often, community interactions.
While our classroom had features of a constructive, supportive learning
environment, it was far from flawless. By virtue of the school's status as a school
for students with "special needs," along with its overarching goals of modifying
social behaviors, our efforts to provide an authentically inclusive milieu
ultimately seemed modest, overshadowed, and in vain. Many of our attempts to
foster an atmosphere that regarded students holistically were inherently
oppositional to defining principles of the school. Such opposition can be
illustrated in an example taken from my practice. Although our classroom resisted
the school-wide policy to track students' behaviors on star charts and the like, the
daily inundation of negative reactions to our resistance proved to be wearing, both
emotionally and mentally. As head teacher, I found myself compromising by
creating goals sheets that required dialogic, interactive, and co-constructive
participation between students and teachers. Students choose three goals,
academic and social, with the support of teachers' input, on a weekly basis. We
would then check in periodically through the day with these goal sheets, to confer
28
with students about their process in meeting their goals. The goal sheets were sent
home each evening for parents' review, but material rewards were not a part of
the scheme. This arrangement satisfied the administration enough to quell such
comments as "I don't see your behavioral chart—it must be in here somewhere"
during weekly child study meetings. However, the conversations about the
supposed problems of our not providing material rewards for "good"
behavior/meeting goals never disappeared. Indeed, many times, our modest
classroom-wide modification of the behavior chart seemed to be rendered
meaningless in light of punishments students contended with as a result of
behaviors considered to be more serious, typically those that involved physical
violence. In such instances, which were frequent with several students, the
administration advocated that we respond by using physical restraint. The
ramifications for this expectation for our classroom community were multiple and
beyond the scope of this description, however, suffice it to say that this proved to
be an undeniable point of contention in my inherent discomfort with this
expectation.
By virtue of the school's exclusivity, students' ability to learn from their
peers a variety of strategies for coping with troublesome areas, such as managing
stress and anxiety, was limited. Though students were fortunate to have a
multitude of caring and dedicated staff (e.g. occupational therapists, speech
therapists, school psychologist, teachers) who helped them integrate new ways of
managing different sources of stress in their lives, students did not have the
benefit of sharing a learning community with peers who experienced life in
29
different ways, namely without labels of disability. Thus, the students' identities
were tethered tightly, and sometimes seemingly singularly, to their status as
"disabled." This reality was strengthened by the school's social skills curriculum
which underscored the idea that our students were indeed in need of specific
social training, as their personal styles of socializing were perceived to be
defective and/or underdeveloped.
While my experiences as a teacher informed the way I have come to understand
how deficit conceptualizations of AS are reified in classrooms and shape the way
educators perceive students (e.g. as socially deficient) and construct pedagogical
practices with these deficits in mind (e.g. develop a social skills curriculum), so too have
my observations in classrooms in which I supervised student teachers. In a variety of
contexts, I have seen time and again a similar scenario: where students labeled with AS,
in classrooms including students with and without labels of disability (inclusive settings)
as well as those specifically for students with disability labels (self-contained settings),
make contributions to the community that are not fully acknowledged or validated as
acceptable. Indeed, many of these students are edged out of the general curriculum in
both subtle and overt ways. They may be included physically in the class with their
same-age non-classified (or "neurotypical/NT," Broderick & Ne'eman, 2008, p. 459)
peers; however, they are often relegated to the outskirts of the room where their
paraprofessional supports can help them on an individual level. I have witnessed watereddown curricula and an unjustifiably low set of expectations for these students' full
participation in the classroom community and school in general, in all types of schools.
30
While I stress that subtle and overt exclusion happens in both self-contained and
inclusive contexts, I acknowledge the move toward the inclusion of students labeled with
AS (and disability in general) as a sign that the field of education is moving in a positive
direction (that is, toward equitable, democratic goals). The impressions that I express
about the state of many classrooms I have observed regard the present quality of
instruction. That is, while it appears that inclusive educators are not yet providing
equitable access to all students, they have taken a very important and crucial step that
educators in self-contained settings, by virtue of maintaining segregated educational
contexts, have not: moving toward democratic, equitable teaching practices. In light of
the reality that scholars have already begun to address issues pertinent to the intersection
of AS and inclusive schooling, (e.g. Connor, 2000; Hay & Winn, 2005; Humphrey &
Lewis, 2008; Kluth, 2003), it seems that it is a matter of time before inclusive educators
learn (and of course, many have) the intricacies of enacting genuinely inclusive teaching
practices.
While my personal observations have suggested that students labeled with AS
experience marginalization as a result of the deficit conceptions that seem to define them
in school contexts, there are other forces that contribute to educators' deficit conceptions
of these students. I shift now to a discussion of these forces.
Forces that impede educators' ability to see students labeled with AS holisticallv.
In modern culture, it is the aggregate of students' individual characteristics that
education, on a systemic level, is concerned with. Tracking based on perceived aptitude,
ability and potential has been at the heart of efficient schooling practices since the
beginning of industrialized culture (Meier, Kohn, Darling-Hammond, Sizer, & Wood,
31
2004; Rousmaniere, 1997). The need to specialize, diagnose, categorize, and label
students reflects a culture preoccupied with asserting scientific logic and ideas of a
singular "truth" onto the field of education, despite the reality that it is a primarily social
and undeniably human enterprise (Gallagher, Heshusius, Iano, & Skrtic, 2004).
Scholars have explored the idea that the deficit thinking (manifested for instance,
in categorizing students based on their perceived weaknesses) necessary to realize
scientific forms of truth cannot account for the whole of any student's experiences. Iano
(2004) notes, "the natural science-technical model promotes a conception of students as
'objects' to be technically manipulated in the interest of achieving given and externally
imposed objectives" (p.77). Parsing out symptoms of predefined syndromes cannot
allow one to understand the nuances of human experience in any way that is authentic to
or representative of the complexity of one's lived reality. The modern push to label and
track that reflects a reverence for positivist science encourages tunnel vision. As a result,
we (educators, scholars) begin to see students through the lens of their perceived deficits
as opposed to the multifaceted array of qualities that make them dynamic human beings.
The practices of categorizing and labeling are especially pervasive in the field of
special education, where students labeled with disabilities are often excluded from
general education classrooms and school-based social activities of their peers (Allan,
1999; Brantlinger, 2006). The specialized culture of education has gleaned calculated
insight into attributes of individuals who are considered outliers on the norm-defining
Bell Curve (see Gould, 1 996), but only by necessarily marginalizing them in the process.
Practitioners have used IQ tests and other measures of intelligence and social aptitude to
justify tracking and labeling decisions and have held taken-for-granted conceptions of
32
normalcy in place, unchallenged and unquestioned (Gabel, 2005; Gould, 1996;
Kincheloe, 1999). Likewise, the standardized conception of intelligence that the IQ test
reflects fails to consider that human intelligence may be found in the "unique and creative
accomplishments one is capable of in a variety of venues and contexts" (Kincheloe, 1999,
p. 3).
Thus, the practice of excluding students based on their divergent modalities of
expression and engagement is common to students with disability labels (Allan, 1 999;
Brantlinger, 2006; Collins, 2003; Kliewer, 1998; Reid & Valle, 2004). As part of a field
that takes direction from fields such as business and management (Brantlinger, 2006;
Meier et al, 2004) teachers are embedded in a system that places enormous precedence
on being efficient practitioners. The culture of assessments and high-stakes testing
contributes to an atmosphere wherein it becomes difficult to acknowledge many forms of
participation as valuable (Allan, 2003), particularly when it falls out of familiar frame(s)
of reference.
Systemic forces that lend structure to the way educators practice bear significance
on the lives of students labeled with AS in particular ways. In light of the reality that
DSM-IV-TR criteria for AS states an "absence of a clinically significant delay in
cognitive development," (2000, p. 84) and that AS is often described as falling on the
"high functioning" end of the autism spectrum (Wing, 2005), it is striking that students so
labeled are often treated in schools as lacking intellectual ability. It seems that by
engaging in ways that are unconventional, or which do not conform to the "established]
norms for appropriate behaviors" (Brantlinger, 2006, p. 64), these students represent what
can be thought of as a wrench thrown into an otherwise smooth-running system, and the
33
system does not yet know how to flexibly handle the interruption in the discourse of
efficient schooling practices. Thus, in order for business to proceed as usual, educators
contend with the tension presented by students' "deficits" or unconventional ways of
engaging by creating separate (as distinct from differentiated) learning standards and
expectations than their NT peers, often within the very same physical setting.
One way that educators can work to move beyond understanding students labeled
with AS in terms of their assumed deficits is to engage a "presuming competence" stance
(Biklen & Burke, 2006, p. 166). Biklen and Burke (2006) discuss this notion as one
possible response educators can take when they do not know what a student is thinking
(such as when the person does not speak). This is an "optimistic" stance (Biklen &
Burke, 2006, p. 172), and reveals a belief in students' intellectual abilities, regardless of
whether or not he or she demonstrates that competence in a way that others readily
recognize as such. Presuming students' competence can pave the way for equitable
pedagogical practices, since educators' belief in students' abilities does not deter them
from engaging students in learning opportunities that are rich, challenging, meaningful,
and thus growth-inspiring.
I assert that the second part of the problem that this study responds to, the paucity
of students' perspectives in scholarly research, can in part by addressed by engaging a
presumption of competence stance. By including students' perspectives in the research, I
explicitly presume that these individuals have meaningful ideas to contribute. I turn now
to a discussion on the value of student perspectives in scholarly research.
34
Student Perspectives in Scholarly Research
The scarcity of scholarly work on AS and schooling that includes the perspectives
of students so labeled has been documented (e.g. Carrington & Graham, 2001; Connor,
2000; Humphrey & Lewis, 2008; Osler & Osier, 2002). Further, the very scholars who
have noted this observation have also stated the importance of looking to students to
better understand their experiences in school. By including the perspective of a student
labeled with AS, Osier and Osier (2002) assert that the student's insights, "may influence
teachers and lead to improvements in the schooling of other young people with Asperger
Syndrome" (p. 37). Engaging the perspectives of students who are labeled with AS can
open up opportunities to see beyond common deficit-based conceptions of AS (i.e. as
outlined in the DSM) by illustrating the relevant, reflexive, and meaningful ways that
they engage in school. In doing so, DSM-IV-TR criteria for the classification such as
"Restricted repetitive and stereotyped patterns of behavior, interests, and activities,"
(2000, p. 84) for example, might be interpreted in a different light- one which highlights
the constructive channeling of an intense interest in a particular area.
In an effort to illustrate the power of personal narratives in pursuing
understandings of what it means to live with an AS classification, I provide an example
of work written by a young man, Luke Jackson, who is labeled with AS. Jackson's
writing provides insights that challenge conceptions of the classification, particularly
aspects of the classification criteria that note an absence of the ability to interact socially
with others in appropriate ways. In Freaks, Geeks, and Asperger Syndrome (2002),
Jackson constructs a creative work that enables his communication with others: he
35
describes the ways in which he uses language, an apparent interest of his, to facilitate a
conversation he fosters between himself as a writer and his readers. Jackson notes:
I am very interested in commonly used expressions that seem to make very little
sense. They are called idioms. Ones that spring to mind in relation to my family are
"Too many cooks spoil the broth" and "Many hands make light work." Rather than
explain what each expression means throughout the book, I will make a list of the
ones I have used and their meanings in the back. It's a good ploy to ensure that you
read on, too! So if I write some obscure sentence in the middle of a chapter—turn to
the back of the book. (p. 18)
Jackson portrays the ways in which he uses language to serve purposes of
communication, entertainment, and, as evidenced in his disclaimer to readers on how to
read his work, social expression. Self-representational works by authors like Jackson
have given credence to the act of honoring those whose perspectives, although most
intimately informed, have too often been marginalized in scholarly discourse on
disability. Like Jackson, there are others with labels of AS who have contributed to a
growing field of work- both within (e.g. Ne'eman, as represented in Broderick &
Ne'eman, 2008) and on the outside (e.g. Shore, 2003) of the scholarly realm-- that have
deepened and broadened the meanings of AS in their descriptions of navigating a variety
of contexts, some of which seem to reinforce their "deficits" and others which allow them
to see AS and thus themselves not as "disordered" but rather as "another order of being"
(Shore, 2003, p. v). These individuals' insights can inform educators' understandings of
features that constrict and support both their learning and their construction of a healthy
identity.
Working within an interpretivist paradigm and a Disability Studies (DS)
perspective supports my endeavor to understand schooling experiences from the
standpoint of individuals labeled with AS. I address these features next.
36
Interpretivism and Disability Studies (DS)
As an interpretivist researcher, I aim to "describe, interpret, and understand"
(Ferguson, Ferguson, & Taylor, 1992, p. 6) students' experiences through "a kind of
empathie process" in an endeavor "to approximate the perspective" of those students (p.
6). Taking a DS stance supports my efforts to portray students labeled with AS in their
complexity, meaning their strengths, competencies, and proclivities. Gabel (2005)
outlines five tenets of a DS perspective, two of which (numbers two and four) this study
primarily engages:
1) it is multi/inter-disciplinary, 2) it "challenges the view of disability as an
individual deficit that can be remediated" and explores the external factors
(e.g. culture, society, economics, politics) that define people and "determine
responses to difference," 3) it studies disability from national and international
perspectives, 4) it encourages participation by disabled people and "ensures
physical and intellectual access," and 5) it prioritizes leadership by disabled
people while also welcoming the contributions of those who share the above
goals, (p. 11)
In interpreting AS as inclusive of competencies, I challenge "the view of
disability as an individual deficit that can be remediated" (Gabel, 2005, p. 1 1). Likewise,
in acknowledging the role that widely-held assumptions about AS (as manifest in
dominant cultural narratives and in other contextual features of schools) play in
determining how students so labeled are perceived and thus experience school, I explore
"external factors" that "define people and 'determine responses to difference"' (Gabel,
2005, p. 1 1). Gabel (2005) elaborates how a DS perspective relies on the "social model"
of disability, which represents a strategic move away from the medical discourses that
have contributed to limited conceptions of disability:
37
It is fairly well accepted that the earliest formal expression of the social model
originated in the disabled people's movement of the UK in 1975 when UPIAS
[Union of Physically Impaired Against Segregation] issued a policy statement
in which it argued that "the traditional way of dealing with disabled people has
been for doctors and professionals to decide what is best for us" (Section 14)
and called for disabled people's resistance to the medicalization of disability...
(P- 3)
Thus, the social model can be understood as a response to ableist discourses and
practices—those which normalize non-disabled status/identity thereby rendering disabled
status/identity as aberrant— embedded within societal structures (Linton, 1998). In
engaging a DS perspective, I assert the value of and need for humanistic renderings of
disability (and AS specifically) experience. I believe that engaging students' perspectives
can highlight how students' lived experiences with AS blur the dichotomy of
able/disabled. In the following section, I reiterate my aim to contribute holistic
representations of students labeled with AS, within a discussion of the study's purpose
and rationale.
Purpose and Rationale for the Study
Broadly, I aim to understand, through an analysis of students' participation and
insights, a) what it means to be labeled with AS in schools and b) how three students so
labeled integrate a variety of facets of experience to inform their identities. To meet this
aim, I highlight instances wherein students' actions and insights contribute counter
narratives (i.e. evidence their competencies and strengths) and illuminate how counter
storytelling contributes to complex and holistic ways of conceptualizing students labeled
with AS. This study was conceived in response to a dearth of students' perspectives in the
scholarly research, a reality that, as I previously described, has implications for
38
maintaining deficit-based conceptions of AS. The study is likewise a response to
primarily deficit-based narratives that exist within the scholarly literature on AS and
schooling, and to the way that these conceptions to a large extent determine a) students'
ability to formulate identities that reflect their competencies and b) educators'
perceptions and treatment of students so labeled.
The purpose and rationale for carrying out this study are founded upon narrative
disconnects that I discerned over the years in the process of teaching and researching with
students so labeled. As I described earlier (in sharing the excerpt featuring Alex, and in
my description of experiences as a classroom teacher), in my experience as a researcher
and educator, it has been the case that the varied and diverse (both within the category of
autism and AS and within the larger scope of humanity) ways in which students labeled
with AS interact with the world are extremely creative, as deviant as they are considered
to be from the conception of "average" derived from the Bell Curve. That said,
characteristics associated with individuals so labeled that cast them as divergent from the
average or "norm" are interesting to study not as a means for pursuing objective,
scientific, or medical understandings, or in an effort to quell such characteristics as one
might endeavor to cure a disease, but as a way to understand the creative capacities and
potentialities of human expression. Thus, I regard the defining features of AS as forms of
human expression amongst a vast array of potentialities. In doing so, I concur with the
stance that autism and AS belong to a natural and expected range of human
neurodiversity (see Broderick & Ne'eman, 2008). Exploring the meanings that students
make of their experiences in school as well as identifying issues that they find to be
central features in the evolution of their adolescent identities is in part an act of
39
recognition, acknowledgement, and appreciation for the rich contributions these students
bring to the school and by extension, the larger community culture.
It is also important to note that it is not an aim of this inquiry to strive to endorse
legitimacy upon those classified with AS to the extent that legitimacy equals normalcy.
Insofar as I understand the term "normal" to be politically, socially, and culturally
situated in a position of privilege and power and as embedded in scientific roots (Gould,
1996), I resist its relevance as a parameter by which to measure human worth. It is rather
in an effort to see beyond the binary of normal/abnormal that we (educators, scholars)
can appreciate AS, like any label of disability, from a broader vantage point—one that
expands our understanding of humanity in all its potential, and acknowledges its vast
constellations of expression.
Finally, conducting a qualitative study using a DS framework enables me to look
beyond supposed deficits and thus supports my ability to presume competence (Biklen &
Burke, 2006) in students labeled with AS. By presuming that their modes of expression
and participation are inherently relevant, I affirm that the meanings that the students in
this study make of their experiences are valuable and reflective of what they find
important in their lives. Further, by engaging participants in a study that honors their
"native insider perspective," I pursue ernie understandings, or those that "emphasize...the
value and creativity of deviant behaviors" (Goode, 1992, p. 198).
While this study is, on a fundamental level, an act of acknowledgment and
appreciation for the diversity that exists within humanity's scope, it is my hope that the
ideas and insights that I incurred in the process of engaging this research contribute to the
40
field in meaningful, relevant, and pragmatic ways. I explore the potential significance of
this work next.
Significance of the Study
Young (2000) points to the importance of gauging the insight of a variety of
constituents in aims of promoting democratic goals, noting that narrative "serves
important functions in democratic communication, to foster understanding among
members of a polity with very different experience or assumptions about what is
important" (p. 71). In eliciting the perspectives of students labeled with AS, this study
attends to vantage points that are typically excluded in the discourse on AS and
schooling.
Importantly, then, this study can contribute to educators' and scholars'
understandings of issues that students labeled with AS find important, and in doing so,
can highlight their interests and abilities. Casting students in terms of what they can do is
a divergence from majoritarian narratives that so often define students so labeled in terms
of what they apparently cannot do. In highlighting students' insights and actions, the
study thus bears the potential to disrupt current understandings of students labeled with
AS. At the level of practice, attending to students' insights can spur educators' ideas
about how to cultivate relevant learning experiences with these students' strengths and
interests in mind. This is an important step that can lead to educators' recasting students
so labeled as capable of learning alongside their peers with and without labels of
disability. Equitable and democratic pedagogical practices necessarily rely upon
teachers' ability to foster students' educational growth and participation (Allan, 2003).
41
This ability can be developed through teachers' awareness of and integration of students'
interests and strengths into curricular initiatives.
On the level of scholarship, learning from students' insights about what it means
to be labeled with AS can move the discourse away from deficit-driven conceptions of
AS to recast individuals so labeled as relevantly responding to the world in which they
live, thereby instating their agency and sense of competency. Recasting students labeled
as such bears significance to students of education and those enrolled in disability studies
courses. To understand individuals in terms of what they can do, and to glean ways in
which students' strengths and competencies can be elicited in school contexts are
important steps in future and current teachers' evolution of democratic, equitable, and
thus inclusive pedagogical practices.
Dissertation Outline
In the following chapter, I review literature pertinent to foregrounding my
analysis and interpretation of students' schooling experiences. That is, I identify and
discuss the original AS narrative as well as the roots of majoritarian narratives on AS and
illuminate how these narratives are reiterated and reified in scholarly literature. In
addition, I attend to scholarly work on AS and schooling that by virtue of incorporating
students' perspectives in research, approach the contribution of counter narratives on AS
and schooling. This portion of the review is prefaced by a review of self representational
works authored by individuals labeled with AS and a description of a particular piece of
scholarship that infuses self representational accounts to powerful ends. I conclude the
42
chapter with a review of scholarly work that parallels this dissertation in terms of
paradigm, conceptual framework, and methodology.
In chapter three, I discuss the qualitative methodology that I engage in this study.
I describe the paradigmatic orientation that I align with, the participants, the school
contexts, strategies of data analysis and presentation, limitations of the study, and notes
on the interpretive process. In short, I address the methodological tools and structures I
employed in efforts to meet the twofold goal of a) contributing individual case studies of
the three participants and b) conducting a multiple case analysis.
In chapters four, five, and six, I present, analyze, and interpret each of the
students' participation and representations of life in school. In doing so, I draw attention
to the ways the students conform to or counter common narratives about what it "means"
to be labeled with AS. Further, I offer a summative discussion on the ways that a variety
of facets of experience (e.g. interests, history, goals) inform students' cultivation of
identities.
In chapter seven, I provide a cross-case analysis, highlighting the ways in which
the three students engaged through their words, work, and actions, with majoritarian
narratives about AS that emerged within the analysis of the individual cases. In addition,
I discuss themes that emerged within the cross-case analysis, and particularly attend to
what the participants collectively "tell" about what it means to be labeled with AS.
In chapter seven I also discuss implications for research and practice, attending to
ways that this piece of work can add to a growing field of study that incorporates the
views of individuals labeled with AS specifically and disability broadly. Further, I
highlight ideas for future research. I conclude the chapter by illuminating the ways that
43
students' representations and participation collectively inform an understanding of how
educators might work to cultivate practices that bear students' interests in mind, a process
by which democracy and equitability might be evoked in schools.
44
II- REVIEW OF RELEVANT LITERATURE
In this study, I broadly aim to understand what it means to be a student labeled
with AS. Further, I endeavor to understand how students so labeled integrate a variety of
facets of experience to inform their identities. In efforts to meet these goals, I highlight
instances wherein students' actions and insights contribute counter narratives to
majoritarian stories about what it means to be so labeled and illuminate how counter
storytelling contributes to complex and holistic ways of conceptualizing students labeled
with AS.
In this chapter, I review sources of work that contribute to diverse understandings
of what it means to be labeled with AS as well as work that parallels this study in terms
of methodology, paradigm, and conceptual framework. Importantly, I identify the AS
narratives that prevail in scholarly literature (and identify these particular narratives as
"majoritarian" narratives on AS) as well as in popular literature and culture. In doing so,
I foreground the analysis of students' school experiences and position this study within a
growing tradition of scholarly work that incorporates students' perspectives in efforts to
constructively disrupt common understandings of AS in particular and disability broadly.
I review the following sources of work: a) Asperger's original descriptions of youth who
demonstrated characteristics associated with the classification that is named after him; b)
the definition of AS as outlined in the DSM-IV-TR (2000); c) Baron-Cohen and
colleagues' conceptualization of Theory of Mind (ToM) with regards to individuals
labeled with AS; d) scholarly literature on AS and schooling that reifies the narrative
45
embedded in the DSM definition; e) AS self representational work, particularly
autobiography; f) a scholarly text that integrates self representational accounts of
disability, Autism and the Myth ofthe Person Alone (2005) by Attfield, Bissonnette,
Blackman, Burke, Frugone, Mukhopadhyay, & Rubin; g) scholarly literature that
contributes to AS counter narratives by including the perspectives of individuals who are
labeled; and h) studies that parallel this dissertation in terms of paradigmatic stance,
conceptual framework, and methodology.
I begin the analysis of literature by foregrounding Asperger's descriptions of
youth who demonstrated characteristics that have come to be associated with the AS
classification. I draw attention to the holistic tone that this narrative evidences, and which
contrasts the majoritarian narratives that prevail in scholarly literature. I then shift to an
analysis of the highly referenced definition of AS outlined in the DSM-IV-TR (2000),
with particular attention to the way that the assumptions embedded within the definition
have paved the way for the proliferation of majoritarian narratives about what AS
"means" with particular regard to schooling.
Next, I describe psychologist Simon Baron-Cohen and colleagues' employment of
Theory of Mind (ToM) to explain why individuals labeled with AS purportedly
experience inabilities in social, emotional, and communicative realms. I then move on to
an analysis of scholarly literature on AS and schooling, highlighting how this body of
work overwhelmingly adopts particular criteria of the DSM definition in its
conceptualization of AS. In doing so, I discuss how scholarly research on AS and
schooling typically works to reify narratives rooted in the DSM definition, positioning
students so labeled as socially deficient and restricted in their patterns of behavior.
46
Then, I analyze self representational work of individuals labeled with AS. Here, I
underscore these individuals' ability to provide counter narratives to the primarily deficitbased majoritarian narratives that are a mainstay of scholarly literature. Next I shift to a
discussion and analysis of a particular piece of scholarly work that, in its inclusion of the
self representation of individuals labeled with a disability (autism), contributes powerful
counter narratives to common understandings ofthat disability. In this piece of work,
Autism and the Myth ofthe Person Alone (Biklen, et al., 2005), the authors bridge the
apparent chasm between scholarly literature and autobiographical accounts that seem to
exist in mutual exclusivity.
I then return to a discussion on scholarly work, this time with an aim to illuminate
those rare pieces of work that, like Asperger's original insights and the selfrepresentational accounts, represent AS as indicative of competencies. To some degree,
each of the studies in this section contributes a counter narrative to majoritarian
narratives on AS and schooling. Finally, in this chapter, I articulate eight particular
majoritarian narratives that I identified in the process of conducting a textual analysis of
scholarly work on AS and schooling before reviewing studies in acknowledgement of a
research tradition— qualitative, interpretivist research guided by a DS stance— that has
paved the way for the present study. This portion of the review highlights how research
in this tradition has broadened conceptions of disability in general.
Discussing these divergent areas of literature allows me to articulate where the
study fits within the tradition of DS research broadly and the field of AS (and schooling)
specifically. I now begin with a discussion of Asperger's insights. Interestingly,
although he wrote these observations 66 years ago, the tone of competence that nuances
47
his descriptions counters the deficit tone that characterizes contemporary majoritarian
narratives on AS.
The Original AS Narrative: Hans Asperger
In his 1944 publication, Asperger described several youth with whom he worked
in his capacity as a pediatrician, and as such provided the original narrative associated
with the classification that is named for him. He noted how these youth struggled in
social realms and were intensely interested in particular areas or topics, and thus
described the youth as "abnormal" (Frith, 1991, p. 37). However, Asperger's
understanding of "abnormal" did not seem to rest wholly on assumptions of deficit—
rather, his descriptions attest to a more complex idea of its meaning (and thus its
complement, "normal"). He inferred that one could both fall outside the realm of a
culture's construction of "normal" and possess the ability to achieve, contribute
productively, and otherwise signify competence. Asperger did not avoid the reality that
those he described had significant difficulties in a variety of situations. He wrote, "In
many cases the social problems are so profound that they overshadow everything else"
(Frith, 1991, p. 37). However, he levered these observations with the apparent
capabilities he also judged the youth to possess: "In some cases, however, the problems
are compensated by a high level of original thought and experience. This can often lead
to exceptional achievements later in life" (Frith, 1991, p. 37). In a similar vein, Asperger
thought these youth demonstrated traits that were "necessary for high achievement in the
arts and sciences" (Wing, 2005, p. 199).
48
Conceiving of these youth as representing a stable personality type "as opposed to
a progressive disorder" (Frith, 2004, p. 672), Asperger further asserted that despite their
difficulties these individuals "can fulfill their social role within the community, especially
if they find understanding, love, and guidance" (Frith, 1991, p. 37). Asperger also
favored an "educational approach" (Frith, 2004, p. 673) to working with individuals who
portrayed the characteristics he described, and especially approaches "where teachers
would work with them rather than against them, building on their strengths and
circumventing their weaknesses," and where students were "guided by their own special
interests" (Frith, 2004, p. 673). Describing the youth in terms of their struggles and their
capacities conveys a holistic tone that contrasts majoritarian narratives that are prevalent
in contemporary culture, particularly within the realm of scholarly research. The
tendency within special education (as rooted in psychology and medicine) to reduce
individuals to their assumed deficits in the process of identification, intervention, and
remediation seems to have overridden the largely competence-based, strengths-focused
narrative that Asperger engaged.
In fact, Asperger's account was not widely dispersed within scholarly literature
until relatively recently, when psychiatrist Lorna Wing referenced his ideas in a paper
titled "Asperger's Syndrome: A Clinical Account" (1981). Though Wing (2005) has
described AS concomitant with intellectual capacity (and positions AS at the "high
functioning" end of the autism spectrum), in contemporary culture it is nonetheless the
deficit-based narratives that prevail in regards to this classification. Scholars (Frith, 1991,
2004; Lyons & Fitzgerald, 2007; Wing, 2005) have commented on the manner in which
Kanner's (1943) descriptions of autistic youth, which historically paralleled Asperger's
49
work, and were less optimistic in tone (Frith, 2004), proliferated rapidly throughout the
academic world. While Kanner published his work in English, Asperger's was not
published in English until 1991 when Frith translated it from German (Lyons &
Fitzgerald, 2007). This is a significant issue that played a role in the way meanings of
autism and AS unfolded. It is conceivable that if Asperger's accounts had been as widely
read as Kanner' s at the time of their publication, conceptions of the constructs might have
engendered a less pessimistic portrayal.
The DSM definition for AS includes aspects of Asperger's original descriptions
(Pearce, 2005). However, by virtue of the manual's entrenchment in medicine and
psychology, and thus its focus on identifying deficits in order to progress toward
treatment and remediation, the definition does not include the competencies he described.
As Winter-Messiers, Herr, Wood, Brooks, Gates, Houston, and Tingstad (2007) point
out, the tendency for people to interpret AS with "fear and sorrow" is furthered by the
DSM s sole reliance on the "deficit model" (p. 67). They propose that the DSM include
strengths associated with AS as a way to promote a more realistic and balanced portrayal
of what AS "means." In the next section, I discuss the DSM criteria for AS with regard to
the assumptions and values that are embedded within this highly referenced definition.
The DSM and Majoritarian AS Narratives
The American Psychiatric Association first included AS in its fourth edition of the
DSM (1994). Under the category "Pervasive Developmental Disorders," (p. 69) the
classification is currently listed in the manual's updated version, DSM-IV-TR (2000),
where the criteria for a classification of "Asperger's Disorder" (p. 80) are:
50
A. Qualitative impairment in social interaction, as manifested in at least two of the
following: 1) marked impairment in the use of multiple nonverbal behaviors such as
eye-to-eye gaze, facial expression, body postures, and gestures to regulate social
interaction; 2) failure to develop peer relationships appropriate to developmental level;
3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with
other people (e.g., by lack of showing, bringing, or pointing out objects of interest to
other people); 4) lack of social or emotional reciprocity;
B. Restricted repetitive and stereotyped patterns of behavior, interests, and
activities, as manifested by at least one of the following: 1) encompassing
preoccupation with one or more stereotyped and restricted patterns of interest that is
abnormal either in intensity or focus; 2) apparently inflexible adherence to specific,
nonfunctional routines or rituals; 3) stereotyped and repetitive motor mechanisms
(e.g., hand or finger flapping or twisting, or complex whole-body movements); 4)
persistent preoccupation with parts of objects;
C. The disturbance causes clinically significant impairment in social, occupational,
or other important areas of functioning;
D. There is no clinically significant general delay in language (e.g., single words
used by age 2 years, communicative phrases used by age 3 years);
E. There is no clinically significant delay in cognitive development or in the
development of age-appropriate self-help skills, adaptive behavior (other than in social
interaction), and curiosity about the environment in childhood;
F. Criteria are not met for another specific Pervasive Developmental Disorder or
Schizophrenia. (2000, p. 84)
Through this definition, the medical and psychological communities convey the message
that if individuals demonstrate certain behaviors or engage in certain actions, he or she
must be impaired in specific ways. The idea that particular behaviors and actions are
evidence of impairment rests on an assumption of a neutral conception of developmental
normality. Within the DSM, the conception of normal is taken from the Bell Curve, a
statistical tool and human construction (see Gould, 1996). This is an important detail to
remember in light of the tone of neutrality that this official document conveys. In the
DSM definition for AS, the assumption of a neutral conceptualization of developmental
normality is revealed in qualifiers such as: "failure to develop peer relationships
appropriate to developmental level" and "restricted patterns of interest that is
abnormal. . ." While the definition outlines several criteria that evidence a veering from a
51
concept of normal, at times it also describes personal propensities and attributes in
terminology that summon the image of a machine rather than a human being, such as the
sub-criterion (to criterion B): "stereotyped and repetitive motor mechanisms."
In a similar vein, the definition infers that certain "routine" behaviors are devoid
of function, as is evident in the sub-criterion (to criterion B): "apparently inflexible
adherence to specific, nonfunctional routines or rituals." In its consideration of
engagement in "routines" and "rituals" that appear to be "nonfunctional," the DSM
appears to infer that these habits are devoid of purpose, and arguably by extension, of
personal meaning.
By assuming a neutral conception of developmental normality, and in delineating
characteristics that veer from that realm of normality, the DSM clearly situates AS as a
series of deficits. The criteria (A) "Qualitative impairment in social interaction" and (B)
"Restricted repetitive and stereotyped patterns of behavior, interests, and activities" (p.
84) connote a sense of limited capacity in a variety of abilities. With regard to schooling,
it is possible within these criteria and their various sub-criteria to see the roots of several
majoritarian narratives that are commonly reified in scholarly literature. The scholarly
literature highlights qualities that hearken back to DSM language, instating in various
forms the idea that students are impaired socially, emotionally, communicatively, and
that they are limited in their interests. As I demonstrate in the section on scholarly
research, these studies typically focus on various ways of responding to these qualities,
and include specific interventions as well as broad-based school initiatives. In the next
section, I discuss psychologists' use of the ToM construct to build on ideas embedded in
52
the DSM definition. ToM with regards to AS has contributed a strong narrative with
implications fifr students' schooling experiences.
Theory of Mind (ToM)
As illustrated, the idea that individuals labeled with AS experience problems
emanating from social and communication deficits is rooted in the DSM definition. One
prominent idea that has been employed to explain these assumed deficits is ToM, a
construct first applied to the context of individuals labeled with autism and AS by
psychologist Baron-Cohen and colleagues Leslie and Frith (1985). This theory holds that
individuals labeled with autism and AS experience difficulties in social, emotional, and
communicative arenas due to a "core" deficit- the ability to understand the feelings and
perspectives of others (Baron-Cohen, et al., 1985; Beaumont & Newcombe, 2006;
Wellman, Baron-Cohen, Caswell, Gomez, Swettenham, Toye, & Lagatutta, 2002). As
applied to school experiences, a supposed lack of ToM shapes the way students labeled
with AS behave in diverse school contexts, particularly those that require their nuanced
agility with reading the social atmosphere and (re)acting according to rules and
expectations deemed appropriate by the majority culture. As I discuss later in the review
of autobiographical work in the field of AS, several authors (e.g. Jackson, 2002; Willey,
1999) write about the way they process information, navigate personal relationships, and
carry on within their daily lives. They do so perhaps partially in response to the ToM
construct.
The ability to attribute a ToM also has implications for students' ability to engage
creatively and imaginatively. Craig and Baron-Cohen (1999) assert the idea that
53
individuals labeled with AS have impaired abilities to imagine and create, and theorize
that this is the case because they lack the ability to take the perspective of others. The
seeds for the idea that individuals labeled with AS experience impaired abilities in
imagination and creativity are rooted in DSM terminology that positions them as
behaving in "inflexible," "restricted," "stereotyped," and "repetitive" ways. This idea is
also reified in scholarly literature that furthers a mechanistic, rigid portrayal of
individuals labeled with AS (e.g. Carrington, Templeton, & Papinczak, 2003; Myles &
Simpson, 2001; Simpson & Myles, 1998). Myles and Simpson (2001), for example, note
that ". . .children and youth with AS are thought to be socially stiff, socially awkward,
emotionally blunted, self-centered, and inflexible..." (p. 2).
Discussions about a lack of a ToM (and thus an ability to imagine and create) in
students labeled with AS are often muddled by the way they are commonly positioned in
the literature as intellectually capable (see discussion of Hans Asperger), as having
"undoubted special abilities" (Wing, 2005, p. 200), and often characterized as "gifted"
(e.g. Bianco, Carothers, & Smiley, 2009; Henderson, 2001; Little, 2002). It seems
plausible that to be identified as possessing "special abilities" or to be labeled "gifted"
one might also possess the abilities to construct novel ideas— thus necessitating the
capacity to imagine and create. Likewise, there are contrasting views regarding the idea
that individuals labeled with AS have the capacity to appreciate humor, a quality that
rests on the ability to take the perspective of others and to think flexibly. Some scholars
state that the ability to appreciate and comprehend humor is lacking in individuals so
labeled (e.g. Dina, 1999; Emerich, Creaghead, Grether, Murray, & Grasha, 2003) and
others resist this assertion (e.g. Lyons & Fitzgerald, 2004).
While these discordant ideas evidence the interplay of competing discourses in
regards to students' abilities to take the perspective of others, most scholars nonetheless
concur that individuals labeled with AS experience social and communicative deficits. In
building upon as opposed to competing with the DSM definition, the ToM construct
reifies and in many ways furthers (namely by asserting that a ToM is the "core" deficit
responsible for all of the socially-based deficits outlined in the DSM) the deficit-based
narrative embedded in the DSM. As I explain in the next section, in the research on AS
and schooling scholars rally around a common pursuit: the practical matter of attending
to students' perceived social, emotional, and communicative deficits by cultivating a
variety of supports. For many scholars, this means teaching students, primarily through
scripted behavioral strategies, to behave in a manner akin to a person who is believed to
have a ToM (like a NT). For others, the responsibility of attending to problems related to
students' deficits is placed on a broad realm of individuals such as teachers and parents as
well as students and in such cases supports take the form of collaborative, sometimes
school-wide initiatives.
The Narrative of the DSM Reified in Scholarly Work
Scholars identify a variety of issues that illustrate the communicative, emotional,
behavioral, and otherwise socially-based incapacities that they purport students labeled
with AS contend with. A strong and pervasive thread that connects the scholarly work
represented in this section is the idea that as a result of these deficits, students labeled
with AS beckon the support of others in navigating the complex terrain of school. As
such, within the research on AS and schooling, scholars typically focus on approaches
55
and strategies for responding to the issues that crop up as a consequence of students'
socially-based deficits. In this section, I a) discuss the issues that prompt scholars to
regard students as in need of support; b) discuss and analyze the diverse forms of support
represented in the literature; and c) highlight the narratives that scholars rely upon and
thus often reify in the process of proposing particular approaches.
Issues that Prompt Approaches of Support
Within the research on schooling and AS, scholars mainly address issues related
to the first broad criteria outlined in the DSM. That is, researchers discuss a variety of
issues that evidence students' "impairment in social interaction" and "restricted
repetitive and stereotyped patterns of behavior, interests, and activities" (DSM-IV-TR,
2000, p. 84). Prominent issues that scholars address in relation to these two broad criteria
include students' social isolation, peer rejection (Bledsoe, Myles, & Simpson, 2003;
Connor, 2000; Elder, Caterino, Chau, Shaknai, & De Simone 2006; Marks, Schrader,
Longaker, & Levine, 2000), and bullying (Carrington & Graham, 2001; Hay & Winn,
2005; Humphrey & Lewis, 2008; Osier & Osier, 2002; Simpson & Myles, 1998). Elder
et al. (2006) assert that each area of deficit associated with AS such as "significant
impairment in nonverbal behaviors," "failure to develop appropriate peer relationships,"
and "abnormal preoccupation with certain topics of interest" (p. 637) adversely affects
students' ability to learn and assimilate to the expectations of school, thus making them
vulnerable to social isolation and bullying. Similarly, researchers describe students
labeled with AS as socially naïve (Humphrey & Lewis, 2008) and vulnerable to stress
(Carrington & Graham, 2001; Macintosh & Dissanayake, 2006), depression, and anxiety
(Carrington & Graham, 2001; Carrington et al, 2003; Elder et al., 2006) as a result of
56
their difficulties navigating what Hay and Winn (2005) refer to as "the demanding and
complex social environment" (p. 148) of school.
Some scholars (e.g. Connor, 2000) have illuminated how specific school contexts,
such as unstructured periods like lunch time, pose particular social challenges to students
labeled with AS, by virtue of the relatively loose, unpredictable, and ambiguous nature of
these times of day. In addition, some have posited that as a result of their social
problems, students labeled with AS are prone to emotional "disturbance" (Connor, 2000;
Macintosh & Dissanayake, 2006). In response to these observations, scholars have
suggested a variety of approaches to support students' navigation through school. In the
following section, I highlight the range of approaches represented in the literature by
addressing several scholars' work. In the process, I pay particular attention to the
predominant narratives that scholars reify through their discussion of diverse approaches.
Approaches to Supporting Students' Navigation through School
Researchers (Connor, 2000; Elder et al, 2006; Hay & Winn, 2005; Humphrey &
Lewis, 2008; Rogers & Myles, 2001; Simpson & Myles, 1998) have cited that as a result
of their deficits, many students labeled with AS face stress and frustration in school.
Methods of intervention that scholars have identified for alleviating problems such as
stress and frustration range from using behavioral approaches to cultivating collaboration
between students, parents, and educators to responsively differentiate curricula to meet an
array of students' needs.
Behavioral approaches. Scholars discuss the use of behavioral approaches to
intervening on specific problems that students face. Several of these scholars (Carrington
& Graham, 2001; Humphrey & Lewis, 2008; Marks et al., 2000; Simpson & Myles,
57
1 998) include behavioral strategies in multi-faceted approaches to supporting students
labeled with AS in schools, while others write about explicit strategies in some depth
(Bledsoe et al., 2003; Bock, 2001; 2007; Rogers & Myles, 2001; Sansoti & Powell-
Smith, 2008; Scattone, 2008). Marks et al. (2000) make the general suggestion that
educators increase social skills training, particularly during the adolescent school years,
so that students labeled with AS have tools necessary to participate in socially
"acceptable" ways. Similarly, in considering the perspectives of adolescent boys labeled
with AS, Carrington and Graham (2001) suggest the use of specific, social skills lessons
and "explicit teaching and repeated practice of communication skills" (p. 46).
Among the scholars who name specific strategies to address social skills training,
several discuss the social story (developed in 1991 by Gray, 1995), a behavioral tool that
Rogers and Myles (2001) describe as ". . .a brief narrative that describes a situation,
relevant social cues, and responses" (Rogers & Myles, 2001, p. 311). Simpson and
Myles (1998) suggest the use of social stories along with cognitive behavioral
modification and behavioral contracts to address "cognitive and behavioral" issues (p.
1 50) that students labeled with AS contend with. Likewise, addressing issues related to
situations stemming from their "social naivety" (p. 33), Humphrey and Lewis (2008)
suggest the use of social stories as a way to help students navigate ambiguous situations.
Illustrating how the social story can modify the behaviors of students labeled with
AS, Bledsoe et al. (2003) discuss a young man who demonstrated a "significant eating
problem" (p. 294) during lunch time, a behavior that led him to have difficulties with
"peer acceptance" (p. 294). The authors devised a social story for the young man,
wherein they wrote, "I have noticed that my friends eat slowly and carefully to get their
58
food and drink into their mouth" and "I will try to eat slowly and carefully to get my food
and drink into my mouth" (p. 292). Likewise, Rogers and Myles (2001) identified a
young man labeled with AS who experienced distress and confusion over classmates'
comments about him. In response, the authors designed a social story around the
particular interaction that had distressed him. In each case, the authors found that
students' behaviors changed in ways that allowed them to behave in more socially
"appropriate" ways.
Sansoti and Powell-Smith (2008) investigated the effects of computer-presented
social stories and video modeling for three students labeled with AS and found that the
added technological elements in the use of stories improved students' "rates of
communication" (p. 162) in the context of intervention sessions as well as at a two-week
follow-up. While they note that only one of the students generalized the skills to
situations beyond the intervention sessions, the authors assert the valuable role this
strategy plays in remediating the social skills of students labeled with AS. Likewise,
Scattone (2008) notes how "Social stories combined with video modeling were effective
in increasing the conversation skills of a boy with Asperger's Disorder for two of the
three target behaviors," (p. 398) which were eye contact, smiling, and initiating
conversation. The author further commented that the boy generalized these behaviors to
school-based contexts.
Bock (2001, 2007) describes another behavioral intervention called SODA, a
four-part process designed to help students labeled with AS to curb the repercussions of
their "ineffective" (2001, p. 273) ability to navigate social situations. Each step of the
routine, 1) Stop; 2) Observe; 3) Deliberate; and 4) Act, has an accompanying three to
59
four-steps in the form of questions one must ask oneself. For instance, in step one, which
"helps students develop an organizational schema for the setting within which the social
interaction will occur," (2001, p. 275) a student must "Stop" and then ask him/herself 1)
"What is the room arrangement? 2) What is the activity schedule or routine? and 3)
Where should I go to observe?" (2001, p. 273-274). The four steps of the strategy, along
with their concomitant sub-questions, are written out for students to continually reference
in text format. Bock found that using the SODA strategy with various students resulted
in their increased participation in cooperative activities and socializing during lunch hour.
Within authors' discussions of behavioral approaches to supporting students
labeled with AS in schools, their understanding of AS as indicative of deficit is evident in
descriptors such as: "significant eating problem," (Bledsoe et al., 2003) "ineffective,"
(Bock, 2001) and the need to teach students "relevant social cues" (Rogers & Myles,
2001). I now turn to an analysis of the particular narratives that these scholars rely upon,
and thus reify, in the process of articulating approaches that aim to support students'
participation in school through behavioral approaches.
Narratives scholars reify in discussions about behavioral approaches. Social skills
training, social stories and the SODA strategy are interventions that aim to rectify a
variety of perceived problems in students labeled with AS. The relevance of each of
these tools rests on the assumption that students so labeled are: a) deficient in their ability
to connect socially with others; b) inflexible, rigid, and dependent on routines and
predictability; c) deficient in the ability to engage relevantly; and d) lacking the ability to
take the perspective of others (attribute a ToM). Each of these qualities is implicated in
the other-guided ("other" is usually a NT teacher) nature of these interventions. Social
60
stories rest on the assumption that students are not capable of understanding the
perspective of others, and thus bear relevance to students' lack of a ToM in that others
provide the written content for these social situations. Likewise, the need for social
stories rests on the assumptions that students' capacities to connect with others and
respond relevantly to a variety of social situations are deficient, as is evident in the
educators' goal of providing students with "appropriate" responses or means of
navigating a variety of social circumstances. Further, proposing the use of social stories
reflects the idea that students so labeled prefer predictability and lack the ability to
integrate knowledge gleaned from past experiences, thus necessitating new social stories
as novel situations arise.
By virtue of creating a structured, step-by-step process that students continuously
refer to, the SODA strategy relies on the idea that students so labeled are inflexible and
dependent on routines and predictability. Likewise, since others write out the content of
the SODA and thus determine how the student ought to act in particular situations, this
strategy rests on the idea that students labeled with AS are deficient in the ability to
engage relevantly. The success of these behavioral strategies lays in others' judgments of
students' states of mind, what constitutes relevance, and "appropriate" ways to connect
with others and with the environment. Thus, the assumptions undergirding the relevance
of behavioral approaches for students labeled with AS serve to reify the overall deficitbased narrative rooted in the DSM and the conception of developmental normality that it
implicates.
Interestingly, authors who write about specific behavioral strategies focus on the
"effectiveness" of these approaches in changing the ways students respond in social
61
situations. However, in reflecting on the use of social interventions for students labeled
with AS, Elder et al. (2006) note how while scripted programs appeared to change
students' behavior in the short term, they were not effective in the long term. These
authors referenced an observation revealed in a study by Gustein and Whitney (2002)
who noted that "if long-term goals were to be made, then social skills training for
children with AS must be based on the intrinsic enjoyment of experience-sharing
encounters" (p. 651). Thus they add, "Goals of intervention must include not only
scripted social survival skills but should also incorporate social referencing and
coordination of actions, perceptions, feelings, and ideas with social partners" (p. 651).
Gustein and Whitney's (2002) insights suggest that students labeled with AS do
indeed have the capacity to engage reciprocally in relationships with others, and thus bear
relevance to students' meaningful participation in school. In the next section, I discuss
scholars' alternative ideas on supporting students labeled with AS in schools. Many of
these approaches seem to respond to Gustein and Whitney's (2002) assertion, and as such
include broader-based initiatives that implicate a greater number of people in the process
of supporting students labeled with AS in schools. While scholars' discussions about
these approaches evidence the deficit-based narrative that is rooted in DSM, they also
infer conceptualizations of AS that indicate a shift from looking at AS as merely a deficit
residing in the individual to looking at environmental features that support or hinder
students' ability to succeed in school.
Collaborative and structural approaches. While to a large degree, behavioral
approaches place the task of changing a student's behavior on a NT "other," some
scholars have instated the role that students, their peers, and educators collectively play in
62
the process of planning an approach to support students labeled with AS in schools. As
such, approaches that are guided by students' interests, collaboration between
constituents, and structural initiatives have been explored by scholars. Carrington and
Graham (2001) observed how adolescent boys labeled with AS had "obsessions," or
special interests, which impeded their ability to maintain focus during class, and thus
asserted that "obsessions can be encouraged in socially acceptable ways" (p. 46).
Specifically, the authors suggest that these "obsessions" offer the potential to strengthen
students' ability to be seen as strong in a particular area (e.g. computers) if they are given
the opportunity to integrate said "obsessions" into curricular goals. Similarly, Simpson
and Myles (1998) further attest to the value of encouraging students' input, noting that
they ". . .recommend that students with Asperger's Syndrome be involved in program
development and implementation and that they be given options" (p. 150). As such, they
infer the relevance of collaborative engagement in planning students' curricular goals.
Scholars' discussions about collaborative approaches to supporting students
labeled with AS in schools also include the need to educate school personnel about
students' disability (Connor, 2000; Marks et al., 2000; Simpson & Myles, 1998).
Simpson and Myles (1998) note that "These students function best in settings where
adults and peers understand their disability and where adequate resources exist to
effectively manage and supervise them inside and outside of the classroom setting" (p.
150). Connor (2000) asserts the need for all school professionals to increase their
understanding of students labeled with AS and the challenges they face.
In suggesting approaches that support students labeled with AS that are structural
in nature, Marks et al. (2000) respond to students' social isolation and vulnerability in
63
ways that implicate a broad, school-wide approach. They call for educators to set up a
"positive social environment" (p. 14) which is flexible and wherein teachers are mindful
of the needs and learning styles of their students (with and without disabilities). Simpson
and Myles (1998) note that in providing clarity when giving directions and cultivating
routines and schedules, educators can build on students' "preference for predictability,
order, and consistency" (p. 150). Connor (2000) also advocates for "consistency among
all staff in the use of direct and unambiguous directions" (p. 294) when interacting with
students labeled with AS.
Humphrey and Lewis (2008) addressed the need for a réévaluation of certain
structural features in inclusive schools that apparently hindered students' ability to feel
supported. For example, the authors cited how several students in their study noted that
the "visibility" (p. 38) of support staff drew attention to their "differences" (p. 38). In
response, the authors highlighted how support staff might endeavor to maintain some
distance from the student, and to keep a "subtle" presence (p. 39). Additionally, the
authors noted how in cases where support was offered in a subtle manner, staff worked in
collaboration with one another. Thus, their suggestions imply the value of individuals
working in tandem to promote successful inclusion.
Highlighting the value of attending to the perspectives of diverse stakeholders,
Hay and Winn (2005) found that school personnel, students labeled with AS, and their
parents agreed that "victimization, teasing, and bullying" were issues relevant to "some
of the students with AS" (p. 150) in an inclusive secondary school. In light of this
consensus, an anti-bullying campaign beckoned school-wide support. Asserting that
inclusion is not a "one size fits all" proposition, these authors further suggest that
64
educators individualize curricula to meet diverse students' needs, and indicate that a
"flexible delivery model is essential" (p. 144).
The approaches represented in this section call forth a more complex network of
individuals in the process of supporting students labeled with AS in schools. As I discuss
in the next section, these scholars reveal a reliance on the DSM in conceptualizing AS,
but also evidence glimpses of conceptualizing students so labeled as capable, valuable
stakeholders in their education.
Narratives scholars reify in discussions about collaborative and structural
approaches. Like the behavioral approaches, those that represent a focus on collaborative
and structural features also rely upon the idea, as embedded in the DSM, that students
labeled with AS experience specific deficits. In particular, within authors' discussions of
these approaches, they primarily convey the message that students labeled with AS are a)
inflexible, rigid, and dependent on routines and predictability, and b) deficient in the
ability to engage in areas that veer from their particular interests, and as such, driven
toward "obsession." Students labeled with AS are positioned as deficient in the ability to
engage in areas that veer from their particular interests when scholars represent these
interests as "obsessions" (Carrington & Graham, 2001). They are positioned as inflexible,
rigid, and dependent on routines and predictability, as reflected in scholars' identification
of the many ways that classroom and school structures might be set up to include
schedules and routines, and in the call for educators to use "unambiguous," clear
language with students so labeled. While the ideas that scholars suggest in response to
these assumed deficits seem quite helpful (i.e. using routines and schedules and providing
clear, unambiguous language), these strategies would arguably benefit any student.
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Indeed, many teachers rely upon these types of practices to provide all students with a
sense of structure and organization. Though a reliance upon and reification of deficit-
based narratives is evident in authors' discussions of these approaches, they are balanced
by their inclusion of approaches that emphasize environmental features of students'
successful participation, and as such move away from a sole focus on discrete behavioral
issues students face.
In fact, these approaches represent a shift in thinking about the individual student
as the locus of remediation to a focus on the roles that a number of people play in the
process of aiding students' successful participation in school. In doing so, scholars call
for reexamination of structures that hinder students' ability to feel included and
comfortable, including cultivating classroom-based (e.g. routines and schedules) and
school-wide initiatives (e.g. anti-bullying campaign), and differentiating instruction.
These ideas present opportunities to include students' perspectives and interests into
curricular considerations, and for constituents to share responsibility for providing an
environment that is mindful of students' areas of vulnerability and propensities. In that
these approaches represent a move toward a more multi-faceted and collaborative model
of supporting students labeled with AS in schools as opposed to behavioral strategies
alone, they evidence a narrative that subtly instates students' strengths, and thus
capacities. I state this with caution, however, as even scholars who propose studentcentered, collaborative, and structural-based approaches define students labeled with AS
primarily in terms of deficits. Nonetheless, some of these studies make a second
appearance in a later discussion, when I return to an analysis on the literature on AS and
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schooling with a particular focus on the rare studies that contribute, to varying degrees,
counter stories to majoritarian narratives on AS.
Before turning to an analysis on scholarly work that approaches contributing
counter stories on AS, I discuss and analyze self representational work. In this body of
work, it is possible to see a strong narrative that differs from those reified in scholarly
realms, and as such positions AS as indicative of competencies and abilities.
Self Representational Work
While it is clear that scholarly work on AS and schooling reifies the deficit-based
narratives embedded in the DSM, it is possible to see a qualitatively different narrative
within the realm self representational work on AS. The first portion of work that I review
in this section is of the popular literature genre, wherein authors living with AS
classifications contribute narratives that counter deficit majoritarian conceptualizations.
Then, I discuss another arena wherein individuals labeled on the autism spectrum self
represent: committees, organizations, and online forums dedicated to challenging deficitbased conceptions on what it means to be so labeled.
The importance of including insiders' perspectives in disability research cannot be
overstated: it is in self reports that deficit narratives of disability labels are confounded by
descriptions that affirm both the mundane commonalities and individual ways of being to
which every human can relate. Such explanations instate the humanity of individuals
labeled with disabilities and contribute to new ways of understanding what it means to
navigate the world with a particular label of disability. The true goldmine of self
representational accounts that provide a wealth of insights into the reality and diversity of
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living with an AS classification can be found outside the scope of scholarly literature, in
the growing collection of work written about AS by individuals so labeled. I turn now to
a discussion and analysis of these works, with a focus on the distinct narratives that the
authors "tell" about what it means to be so labeled.
Works Authored by Individuals Labeled with AS
The authors reviewed in this section are not exhaustive of the list of those who
write about AS from a lived perspective; they have, however, been especially prolific in
their renderings of experiences with AS and represent a variety of interpretations and
representations of the classification. In doing so, they have collectively shaped the
discourse on AS in significant ways, many of which diverge from the deficit narratives
derived from the DSM. Following, I discuss the work of Marc Fleisher, Luke Jackson,
Stephen M. Shore, and Liane Holliday Willey and particularly attend to the ways that
they contribute counter narratives about what it means to be labeled with AS.
Fleisher. In Making Sense ofthe Unfeasible: My Life Journey with Asperger
Syndrome (2003), Fleisher makes a retrospective analysis of growing up with a label of
autism and AS and details the particular intricacies of navigating life with these
classifications at various ages. His fundamental intent in writing the book is evidenced in
its opening pages where Fleisher discusses how upon reading his autobiography, readers
will in turn teach others about what they have learned, and ". . .an incredible
transformation will have happened across the country. Autism will be universally known.
Our fear of the unknown will have been conquered" (p. 7). Fleisher narrates in a way
that is as captivating as it is informative. The ask-and-answer approach to addressing the
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complex and often contradictory ways in which the term "autism" is conceptualized
highlights the dynamic manner in which Fleisher explores his topic:
...-exactly what is Autism? In some people's minds the term conjures up visions of
someone like in the film Rainman, incredibly gifted academically in the sciences, but
socially in the Dark Ages. Other people have visions of mentally retarded individuals
confined to special homes, totally dependent on others, with seemingly no prospect of
improvement. Still other people have never heard of the term. Can we clarify the
situation? It's tough! (p. 8)
Drawing on personal experiences, which he organizes within chapters dedicated to
distinct years of his life (i.e. Chapter 3 is titled Teenage Turmoil: Years 14-18), Fleisher
attempts to "clarify the situation" in part by drawing detailed anecdotes culled from his
clearly precise (and what he calls photographic) memory. In a particularly poignant story
in the chapter titled Crisis Time: Years 10-13, Fleisher shares the aftermath of the loss of
his sister, whom at various points throughout the text he refers to as the one person his
own age he could relate to. Arriving home for the first time after her death in a car
accident in which the entire family had been involved, he reflects:
. . .there was a terrible numbness, emptiness, the whole family had simply not taken it
all in yet. The terrible reality was that I had not only lost my dear sister, but also
seemingly my only window on the outside world for communicating with someone
my own age. (p. 27)
In situations of extreme stress, such as the death of his sister, Fleisher describes a method
of coping that called upon his powers of imagination. In the wake of this loss, he
envisioned a dreary "parallel" world that conjured images of the ice ages over 12,000
years ago, where there were "no plants, no vegetation, the sparkle and the flowers of life
had gone" (p. 27). Both the way in which Fleisher experienced the emotional
repercussions of losing his sister and the creative way in which he coped with his loss
evidence counter-stories to many of the prevailing beliefs about individuals labeled with
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AS, particularly in terms of supposed deficits of emotion, creativity, and imagination
(emanating from the DSM-IV-TR criterion "lack of social or emotional reciprocity" and
ideas embedded in the ToM construct, respectively). The anecdote that he shares about
losing his sister highlights with acuity Fleisher's ability to imagine, create, and feel with
undeniable depth.
His unique interpretation of what it means to live with an AS classification blurs
the boundaries of able/disabled, dependent/independent. Fleisher's recollections of his
formative years suggest that he equates AS with social deficits. He explains that during
early childhood his "lack of ability or interest in socialising" (p. 17) was a significant
feature in his limited knowledge about his family members, beyond those who were most
immediate. On the other hand, in later chapters he cites his involvement in public
awareness about autism spectrum classifications, a role that commands solid public
speaking skills, as a force that has enabled his ability to change notions of communicative
/«abilities commonly associated with the classification(s). Fleisher's worldview seems to
encompass the "overcoming" (Linton, 1998, p. 17) metaphor that circulates in disability
discourse which reifies the idea that disability is an individual problem that one must rise
above. As such, the idea that one can "overcome" a disability takes the attention away
from widely-held attitudes and social structures that favor the non-disabled (Linton,
1998), leaving these structures unchallenged. Indeed, a steady thread throughout his text
is Fleisher's conviction that individuals labeled on the autism spectrum must learn how to
assimilate to the expectations and social rules ofNTs. Perhaps a precursor to this
conviction is his forthright belief that parents who suspect that their children might be
autistic should pursue an early diagnosis, noting,
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Once your child has been formally diagnosed, it can be a huge relief to many parents
who have actually won "half the battle" so to speak in at least knowing what the
problem is that needs to be solved, (p. 115)
Equally important as an early diagnosis, according to Fleisher, is ensuring that children
with AS and autism are educated alongside their non-disabled peers with the support of
knowledgeable (specialized) educators, as he was. The combination of support staff and
attending school with his non-labeled peers, Fleisher notes, "was worth its weight in
gold" (p. 29). His own diagnosis at age 1 1 came with an immediate sense of relief, and
having a way to name what he had been feeling for so long seems to have engendered in
him a sense of freedom. As an adult, he conveys an understanding of himself as a person
who has much to contribute to the world, particularly in terms of broadening
understandings about what it means to be labeled with autism and AS.
In articulating his experiences with clarity, vision, and vivid imagination, Fleisher
particularly disrupts common narratives that position individuals labeled with AS as
"emotionally blunted," (Myles & Simpson, 2001, p. 2) lacking the ability to imagine and
create, and lacking the ability to connect with others. He thus contributes a narrative that
instates that a having an AS classification is concomitant with the qualities of strength
and competency.
Jackson. As referenced earlier in this dissertation, as an adolescent, Jackson
wrote a book titled Freaks, Geeks, and Asperger Syndrome: A User Guide to
Adolescence (2002). While this particular publication is autobiographical, he has
published other works that center on issues such as diet, nutrition (2002), and poetry
(2006). In his autobiographical text, Jackson reveals an understanding of AS that on one
level aligns with DSM criteria. He discusses how individuals labeled with AS do
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experience impairments in "communication, social interaction, and imagination," (p. 21)
drawing an analogy to an equalizer where each of these aspects differs in degree and
frequency from person to person who share an AS classification. He describes AS as a
mild form of autism, and thus conveys his comfort with the spectrum metaphor.
However, while he uses the metaphor to explain the nuances amongst different diagnoses
under the "umbrella" (p. 20) of autism, Jackson also defines AS in his own terms, as
informed by his experiences living in a world where his way of being constitutes being a
"freak" (p. 34).
As each chapter of his book sheds light on different issues in regards to AS, a
consistent thread that weaves them together is Jackson's sense of humor, his
straightforward, honest demeanor, and a commitment to disrupting the flow of discourse
on AS that has traditionally perpetuated deficit narratives. In one chapter, Jackson
recollects how he learned about his classification of AS. Prefacing this story, he asserts
"If anyone is wondering when to tell their child that they have AS, then in my humble
opinion, the answer is right nowl" He notes the relief he felt when, at age 12, his mother
told him of his classification, sharing, "I finally knew I felt different, why I felt as if I was
a freak, why I didn't seem to fit in. Even better, it was not my fault!" (p. 34). Knowing
about his classification with AS strengthened Jackson's sense of identity in many ways,
and while he thinks of himself as different from his peers, he expresses confidence in this
difference, noting,
...I am not your average child. I like to think of myself as the "new and improved
model" (this is a huge compliment to all AS people reading this book!), but I don't
think most other people would agree with me. I reckon some people might even say
the opposite— that I was defective in some way. (p. 35)
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Citing a dictionary definition of the word "freak," Jackson questions the very concept of
its antonym "normal," and concludes, "This of course comes back to the majority ruling,
I reckon" (p. 35). Jackson's poignant insights regarding the constructed nature of
concepts such as normal and abnormal suggest that he understands the power inherent to
knowledge production. In writing his book, he challenges the "majority ruling" by
asserting that his voice, although traditionally marginalized, holds the capacity to incite
new ideas about AS.
By engaging humor throughout the book, Jackson challenges the idea that
individuals so labeled lack the ability to appreciate and comprehend this quality (Dina,
1999, Emerich et al., 2003). In employing humor and tonal variety, Jackson creates a
style of writing that invites readers to listen to what he has to say, and as such he seems to
establish a relationship with his readers (as evident, for instance, in his shout-out to a
particular subset of readers: "this is a huge compliment to all AS people reading this
book!" p. 35). Thus, in expressing himself with articulation, humor, expressiveness, and
with attention to the thoughts of his readers, Jackson disrupts the ideas that individuals
labeled with AS lack the abilities to connect socially with others, engage relevantly, and
attribute a ToM. Further, as is evident in the way he uses exclamations and humor to
establish tonal variety in his writing, Jackson clearly does not appear to be "emotionally
blunted" (Myles & Simpson, 2001, p. 2).
Shore. In Beyond the Wall: Personal Experiences with Autism and Asperger
Syndrome (2003), Shore describes his history with labels of "atypical development" and
"strong autistic tendencies" (p. 21). He considers a label on the spectrum a "way of
being" (p. v), revealing early on in the text a perspective that aligns with a DS stance,
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noting, "I use this term 'way of being' rather than 'disorder' because I wonder whether
the autism spectrum should be considered as 'another order' of being as opposed to a
disordered, deviant way of existing" (p. v).
Much of his text is dedicated to his adult years, where he discusses his current
work as an academic, a professor, and an advocate for autism issues, and some of the
challenges that he contends with in these positions. Shore consistently acknowledges the
support he received from his family and therapists who helped him to increasingly learn
to live more comfortably with ambiguity and to gradually become more flexible in the
ways he approaches the world. His insights also highlight the significant role of special
interests (such as bike riding) in the development of this flexibility and openness to new
experiences. With particular relevance and meaning to the intersection of AS and
schooling, Shore employs the experiences and recollections of his youth to inform his
intimate understanding of challenges that children and youth labeled on the spectrum
commonly experience.
Shore is interested in the neurological implications associated with autism
spectrum classifications, and refers to the ways in which his neurological sensitivities
were manifested in his early years as well as how they persist in adulthood. He describes,
for instance, how a sensitivity to touch made getting his hair cut a painful procedure as a
young boy. At the time he did not speak, so he felt at loss for a way to communicate to
others that having his scalp touched was a painful experience. As an adult, Shore still
contends with discomfort with physical touch, a reality that perhaps contributes to his
inherent understanding of the many ways that sensory overload can color the experiences
of youth classified on the spectrum.
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In reflecting on his own experiences as well as those of others in his life, Shore
offers suggestions for improving the inclusion of students on the spectrum in the daily
routines of school. In doing so, he iterates the importance and value of including
students' perspectives in the process of figuring out an educational plan that is relevant to
them. For instance, he cited a situation involving a boy who was consistently excluded
during physical education class because he would throw up presumably as the result of
his intense sensitivity to the high-pitched noises in the environment. The boy's behavior
was interpreted as "inappropriate" (p.41) and he was consequently asked to leave class
each day. Shore asserts,
What actually happened was that the child unintentionally trained his teachers to
remove him from the gym class. . .Looking at the situation from the child's point of
view would have engendered better understanding. . .Maybe supplying him with a set
of headphones or an alternate activity for physical education would have helped, (p.
41)
In this quotation and throughout the text. Shore's orientation as an educator is evident.
While he thoughtfully references his past experiences, he does so with the intent to teach
others, envisioning his own challenges and triumphs as tools with which to aid their
successful integration of an autism spectrum classification with other identity features.
His work is remarkably valuable to educators and others working with individuals so
labeled as well: "listening" to Shore's reflections and suggestions makes it possible to
imagine several creative curricular possibilities that promote students' equitable and
inclusive school participation.
The clarity, thoughtfulness, and sensitivity that characterizes Shore's work
suggests that despite what his AS label says about him, he is creative, emotionally
expressive, and able to attribute a ToM (this is particularly evident in his description of
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the young boy who "taught" his teachers to excuse him from gym each day).
Holistically, he counters the deficit assumptions at the foundation of the DSM definition,
namely by interpreting his proclivities as sources of strength (i.e. bike riding was not
couched as an "obsession" but as an interest that catalyzed growth in other areas),
engaging an understanding of himself as competent (as suggested in his prolific writing
and advocacy work), and generally presenting the way he lives his life as an affirmation
of acceptance for who he is, and specifically for naming AS a "way of being."
Shore also edited a book called Ask and Tell: Self-Advocacy and Disclosurefor
People on the Autism Spectrum (2004). The contributing authors (Temple Grandin,
Shore, Ruth Elaine Joyner Hane, Kassiane Sibley, Roger N. Meyer, Phil Schwarz, and
Willey) all identify as autistic or with AS and represent a variety of perspectives on the
topic of disclosure. Each author details thoughtful ideas on how to foster self advocacy
skills in one's life.
In his chapter, Shore discusses ways that students labeled autistic can become
involved in the cultivation of an Individual Education Program (IEP) that reflects their
preferences, needs, interests, and strengths. His approach to supporting students in
cultivating an IEP emphasizes participation and leadership of the student. Including a
diagram (see Appendix A) of how an IEP that involves student participation might look,
he shows how the inner circle of the diagram is labeled "Student as appropriate to his/her
ability," which illustrates the centering of the student's perspective in the rendering of a
meaningful IEP among team members. Each other team member (e.g. special educator,
parent) is represented in this particular diagram within the several branches that radiate
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from the inner circle. Thus, the diagram highlights the centrality of the student's
perspective in development of an education plan.
The book traverses topics that guide readers to teach themselves several skills,
including how to initiate conversations about a variety of issues, recognizing when
others' language may not be meant literally, and deciphering the potential meanings
inherent to different facial expressions. Of interest is a comment in Schwarz' s chapter
highlighting the benefits of borrowing from other marginalized group models to inform
autism and AS self- advocacy. He theorizes that these classifications ought to be looked
at "on a social-model basis as something we are rather than something we have (which
when somehow removed would render us 'normal' neurotypical people)" (p. 167).
Thus, while the book relies on the common conceptions that individuals labeled
with AS have difficulty with communication and social skills, the authors conceptualize
these qualities as indicative of a way of being as opposed to characteristics that need to be
remediated. Their ideas are reminiscent of Asperger's assertion that teachers should
work with students' interests "rather than against them, building on their strengths and
circumventing their weaknesses" (Frith, 2004, p. 673). The authors of this text make
strides in moving beyond a view of AS as indicative of deficits, and take the opportunity
to showcase strategies that are critical in fostering healthy identities in individuals so
labeled.
Willey. In viewing her identification as one with AS, and as a parent of a child so
labeled, Willey' s interpretation of the classification can be understood as a dialogue that
oscillates between deficit-based narratives rooted in the DSM and experiential-based
renderings that stem from her own life. In her first text, Pretending to be Normal: Living
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with Asperger 's Syndrome (1999), she overtly accepts the diagnostic criteria for AS,
including "social interaction impairments" and "speech and language peculiarities" (p.
13). As one who found solace in acquiring a diagnostic label of AS in adulthood, she
encourages readers to identify individuals in their own lives who may "have" AS.
Willey's sense of empowerment and affirmation in having acquired an AS label seems
evident throughout her text, and is especially highlighted in her description of how such
individuals might "look" in everyday life:
At their best they will be the eccentrics who wow us with their unusual habits
and stream-of-consciousness creativity, the inventors who give us wonderfully
unique gadgets that whiz and whirl and make our lives surprisingly more
manageable, the geniuses who discover new mathematical equations, the great
musicians and writers and artists who enliven our lives. At their most neutral,
they will be the loners who never know quite how to greet us, the aloof who
aren't sure they want to greet us. . .At their most noticeable, they will be the
lost souls who invade our personal space, the regulars at every diner. . . (p. 14)
Willey shares a glimpse into her fundamental philosophical conviction about the AS
classification, which she articulates, noting:
I do not wish for a cure to Asperger's Syndrome. What I wish for is a cure for
the common ill that pervades too many lives; the ill that makes people compare
themselves to a normal that is measured in terms of perfect and absolute
standards, most of which are impossible for anyone to reach, (p. 121)
Although she relies on majoritarian narratives in her descriptions of what it means to be
labeled with AS, Willey also reinterprets the narrative, primarily through her plea for
acceptance of people who share characteristics associated with AS. Willey encourages
readers to ponder how individual or historically unconventional ways of being in the
world mesh with the need or desire for a label to put on the constellation of
characteristics that makes one uniquely human.
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In her reflections on life as a student, Willey alludes to the complexity of
adolescence in particular, and especially so for one with characteristics of AS. She
discusses her teenage years with a sense of gratification, noting that her parents accepted
her for her unique and intelligent ways of interacting with the world; in fact, she asserts
that these years were "a simple yet rich experience; a big box of riddles wrapped up in
innocence" (p. 31). Considering past experiences that affirmed her recent conviction that
she "has" AS, Willey references instances where she experienced socially awkward
moments and offers insights into the intersection of schooling and characteristics
common to students labeled with AS. She cites as a particular challenge the difficulty
she had gauging when, given certain contexts, it might be considered an "appropriate"
time to share her frank and forthright thoughts and opinions with others.
Willey' s anecdotes and aforementioned sentiment regarding a "cure" for AS
speak to the problematic potential of standardization practices in schooling and to their
role in shaping the identity and development of all students, particularly those whose
modes of participation stick out in some way. Indeed, her statement reflects an issue at
the heart of educating students perceived to be "different": that they, with their peers,
have the right to express themselves in the ways most natural and meaningful to them
without having their participation viewed as evidence of deviance or deficit (and
accordingly requiring "remedies").
In several ways, Willey thus contributes conceptualizations of AS that counter
majoritarian narratives. First, in discussing the contributions that individuals labeled with
AS have the potential to make to society, Willey conceptualizes AS as indicative of
strength and capacity. She further represents AS as a stable way of being that should be
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appreciated, accepted, and anticipated. Second, within her writing, Willey demonstrates
the ability to imagine and create (evidenced, for instance, in her colorful description of
the many ways that individuals labeled with AS might "look" in society), and third, in
referencing the way others might perceive the world (e.g. ". . .they will be the loners who
never know quite how to greet us, the aloof who aren't sure they want to greet us," p. 14),
she shows the ability to attribute a ToM. Willey and the other authors reviewed in this
section offer qualitatively rich interpretations of what AS "means." In the following
section, I revisit the particular assumptions that they counter, and highlight the unique
narratives that emerge in their collective storytelling.
Strength, capacity, and a "way of being": Countering majoritarian AS narratives.
A notable element that distracts from the power inherent to the authors' perspectives is
that in some of the texts, authors' work is introduced and thus "legitimized" by the
psychologist Tony Attwood (in Willey, 1999; and in Jackson, 2002). This stamp of
approval from a scientifically sanctioned expert communicates the idea that if one's work
is to be well-regarded in the field of AS, it must be validated from the perspective of
individuals who represent "clinical" conceptualizations. Despite this distraction, authors
of AS autobiography contribute remarkably rich narratives that diversify common
understandings of AS. While the authors represented in this section engage contrasting
narratives about what it means to be labeled with AS, their insights, borne of their first-
hand experiences so classified, bear a sense of authenticity that is missing from the bulk
of scholarly literature on AS. All of the authors engage an understanding of AS that is
complex: for instance, these authors describe both elements of vulnerability (which some
describe of as deficit) and elements of strength. The manner in which the authors discuss
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the challenges they associate with AS aids readers' understanding of how these
individuals integrate personal characteristics to become the prolific and articulate
advocates that they are as adults. In doing so, they demonstrate how through a variety of
supports, they have cultivated identities by building on what they can do.
These writers collectively disrupt the ideas that individuals so labeled lack a) the
ability to connect socially with others; b) the ability to engage in relevant ways; c) the
ability to attribute a ToM; d) the ability to imagine and create; and e) the ability to
appreciate and comprehend humor. In addition, the authors affirm the ability to engage
flexibly (e.g. Shore describes how he learned to be flexible and open through the
engagement of a particular interest, bike riding), and through demonstrating their
sensitivity and humor, they disrupt the common narrative that positions them as
emotionally inexpressive, or "blunt."
Each of these disruptions adds up to a whole that is greater than the sum of its
parts. Holistically, these authors contribute a strong narrative that to be labeled with AS
is concomitant with capacity, strength, and ability. Further, they iterate how AS is a
stable, accepted, and expected (in the broad scope of human variation) way of being.
While these authors constructively complicate what it means to be labeled with AS, so
too do those who contribute to autism spectrum rights committees, organizations, and
online forums. Before returning to a discussion on scholarly work that incorporates
counter narratives on AS, I discuss these arenas, drawing attention once again to the
narratives that their members contribute.
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Autism Rights Committees, Organizations, and Online Forums
Another arena in which individuals classified with AS exercise self representation
is found within the growing number of committees and organizations that support an
autism rights movement. Several of these organizations are autistic/AS-run (i.e. Aspies
for Freedom, Autistic Self Advocacy Network, Autism Network International), and some
also state that they welcome the participation of allies/family members of individuals
who are labeled on the spectrum.
The autism rights movement, initiated by individuals labeled on the autism
spectrum, is a civil rights pursuit that is significantly defined by its opposing views of
autism spectrum classifications to those held by renowned organizations such as Autism
Speaks (autismspeaks.org), which espouse interests in finding cures for autism and AS.
Prominent organizations that have interactive websites, many which offer communication
forums and discussion threads on various relevant issues as identified by individuals with
autism spectrum classifications, include: Aspies for Freedom (aspiesforfreedom.com),
Autistic Self Advocacy Network (autisticadvocacy.org), Autism National Committee
(autocom.org), and Autism Network International (autreat.com).
Each of these organizations shares an inclusive, social justice-oriented stance and
espouses an understanding of AS and autism as fluid, permanent, and persistent ways of
being (a notion that is represented on the Aspies for Freedom site, for instance, with an
infinity sign). This conceptualization stands in contrast to majoritarian narratives that
convey the idea that individuals so classified have deficits to be modified, overcome, and
cured. These organizations have spurred a growing culture of "aspies and auties"
(aspiesforfreedom.com) whose contributions to realistic, authentic representations of
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autism and AS counter majority culture representations that are so commonly
characterized by sensationalism, tragedy, and drama. In self representing, the members
of these communities illustrate their abilities to socially connect, communicate, and
engage topics highly relevant to their lives and to the evolution of what autism and AS
"mean."
While these organizations evidence a strong counter narrative that exists outside
of the scholarly realm, it is important to note that individuals labeled with disability do
author scholarly work that contributes to counter narratives. In the following section, I
highlight a particular instance, Biklen et al. (2005), where individuals labeled with autism
co-author a piece of work that as a whole stands to be a forceful counter narrative to the
majoritarian understanding that autism is indicative of being socially isolated and
"alone." Though this dissertation is not a co-authored work, I draw parallels to Biklen et
al. (2005), particularly in my aim to engage conceptualizations of a disability label (AS)
that are holistic and competency-based through the centering of labeled individuals'
perspectives.
Attending to the Chasm: Biklen et al.' s Autism and the Myth ofthe Person Alone
Biklen' s co-authors, Richard Attfield, Larry Bissonnette, Lucy Blackman, Jamie
Burke, Alberto Frugone, Tito Rajarshi Mukhopadhyay, and Sue Rubin, are all young
adults labeled autistic, and all use typing, sometimes in conjunction with speech, as a tool
to communicate their ideas. In their chapters, the authors reflect on their experiences
growing up, attending school, and gaining a sense of independence in their lives. The
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collection of chapters is a powerful exemplar of the multitude of inventive ways in which
those labeled autistic participate in their own lives and display their perspectives.
Bissonnette's chapter, for instance, is "written" entirely in paintings, all rich and
broad-stroked, and captions. In choosing this medium of communication, the author
(who is also an accomplished artist) demonstrates many meaningful life experiences in a
way that feels natural and relevant to him. Painting allows Bissonnette to express his
ideas regarding important aspects of his life while catalyzing his growth as a writer.
Another chapter, authored by Mukhopadhyay and Biklen, is illustrative of another
mode of representation. The two authors engage in a dialogue, presented in interview
format and aptly subtitled "Questions and Answers." The dialogue evidences a multitude
of hours of discussion between the two, and is partitioned into seven themes, including
"Mind/Body," "Communication and Rules," and "Ways of Seeing and Experiencing."
Mukhopadhyay' s reflections are articulate and deeply introspective; his interest in
philosophical lenses with which to interpret the world characterizes his narrative
responses. Exploring the topic of living in a world with others, and particularly where
speaking is the preferred mode of communication, he reveals, "You do not need words to
communicate many things, like something as subtle as assurance. Look at the setting
sun. Does it need words to tell the earth that it will be back on the sky the next day?" (p.
118). In another section of the chapter, Mukhophadhyay's humor diffuses the frustration
of navigating a world wherein others have claimed their expertise on his way ofbeing:
. . . What use is my intelligence when I heard the rubbish from the experts on
Autism and yet all I could do was flap my hands, which is believed to be one
of my traits? And what use is my intelligence when I hear that I am one of
those idiot-savants and cannot say my words? So I have renamed myself as an
intelligent junk. (p. 131)
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His agility in transgressing the definitions that others have attributed to him is both a
palpable and powerful feature in his construction of self respect and identity. Though
Mukhophadhyay and Bissonnette's chapters are only two of the eight that comprise the
book, they illustrate how the centering of voices of individuals with autism classifications
can teach others, including sanctioned experts in the field, new ways of seeing and
interpreting the experiences of autism in its multifaceted array of manifestations.
Importantly, autism autobiography allows a glimpse at how individuals so labeled
find their way in a world frequently intent on defining their experiences for them. Biklen
(2005) elaborates on this sentiment, asserting:
The policing of people classified as autistic may include, for example, desires
to "cure" autism, forced segregation of people labeled autistic in special
schooling and housing, and insistence that the person perform within
completely nórmate standards, rather than in ways that reflect how autism is
experienced... Fortunately, (the) contributing authors also explain how they
often resist regulation, (p. 72)
It is clear that given the opportunity to share their perspectives, individuals labeled with
autism can humanize deficit conceptions of the construct. In Biklen et al, (2005), the
authors collectively disrupt the majoritarian narrative that equates autism with social
isolation and communication deficits. Through attending to authors' counter storytelling,
it is possible to glean the diverse ways that individuals labeled with autism instate their
competencies and find meaning in their lives. Like the co-authors, students labeled with
AS can benefit from the chance to engage in discourse about aspects of schooling that
they find meaningful. Providing this reflective space allows them to share if and how
they transgress limits imposed upon them. In doing so, students offer insights that can
help others (i.e. school professionals, parents) (re)consider what counts as valuable and
relevant school participation.
85
Making space in research for students to represent themselves in their
multifaceted compilations of interests, values, and goals is an important step in attending
to the apparent gap, as Biklen et al. (2005) have attempted, that exists between scholarly
literature (which commonly reifies deficit majoritarian narratives) and popular literature
(which commonly engages narratives that counter majoritarian conceptualizations). I
return now to scholarly work at the intersection of AS and schooling, highlighting the
studies that emerged in my review of this body of literature that include elements of
counter storytelling.
A Return to Scholarly Work on AS and Schooling: Glimpsing Counter Narratives
The studies that I discuss in this section include the perspectives of students who
are labeled with AS. In this analysis, I underscore how attending to students'
perspectives is an action that scholars can take in efforts to encounter narratives that
diverge from deficit renderings and instate students' agency in the process of articulating
what is right for them, educationally speaking. In doing so, I identify several ways in
which these works counter the deficit-based narrative as derived from the DSM that casts
individuals so labeled in terms of what they cannot do. Most of these scholars (with the
exception of Winter-Messiers, 2007 and Winter-Messiers, et al., 2007) do not state an
aim to disrupt common understandings of AS—thus, it appears that in most cases,
instances of counter storytelling are unintentional byproducts of including the
perspectives of students so labeled.
I turn now to a discussion ofthe ways that scholars contribute to competencybased narratives on AS in the following ways: a) by casting students' interests as
86
strengths; b) by highlighting ways that students resist, in Biklen's (2005) term, "policing"
(p. 72) and being defined in terms of deficits; and c) by illuminating the ways students
define what is educationally right for them.
Casting Interests as Strengths
Winter-Messiers (2007) describes the wish to recast deficit understandings of
students' Special Interest Areas (SIA) as strengths in order to diverge from pathological
framings of SIA that serve to distract from students' abilities. The author notes that
participants in her study "clearly wanted to be recognized as experts and be accepted by
their peers," (p. 144) and adds that their self-image is tightly tethered to their SIA. She
thus asserts that it is of utmost importance that educators find ways of bridging students'
SIA with curricular goals, contending:
When as parents, teachers, and peers we deny a child or youth the importance of his or
her SIA, we are literally denying the student of his or her identity. If children and
youth with AS cannot feel safe and supported in openly revealing their SIA at school,
we are forcing them to leave themselves at home. (p. 149)
While Winter-Messiers articulates the role that interests play in students' ability to
cultivate healthy identities, she also advocates for employing SIA as a reference point in
cases where students show emotional distress, as well as for bolstering other areas in
which students experience struggle. Further, the author asserts that rather than perceiving
SIA as the culprit for their "misbehavior" (p. 149) or regarding a preoccupation with SIA
as grounds for punishment, educators should foster students' ability to direct the intense
energy with which they engage their favored topics toward the academic, social, and
emotional goals as stated on their IEPs.
87
Similarly, Winter-Messiers, et al. (2007) articulate their distinct re-
conceptualization of SIA as strengths in contrast to the way these interests are commonly
conceptualized as problematic behaviors. They note,
A strong positive relationship was found between engagement of special interest areas
and individual strengths in areas typically seen as AS deficits, including
communication, social, emotional, sensory, fine-motor, executive function, and
academic skills, (p. 67)
The authors hinge their work on a question that they pose and then respond to,
probing, "Why do these (autism and AS) diagnoses incite such fear and sorrow... Among
the most obvious reasons is simply that AS has most commonly been defined by a deficit
model" (p. 67). They critique the DSM-IV for "excluding strengths" (p. 67) in its
definition of AS and iterate the importance of understanding SIA as important sources of
curricular enhancement. They also re-cast each "deficit" category as distinct strengths,
illuminating the interesting ways in which participants talked about their SIA and
revealed facets of their identities and personalities in the process of doing so. The
authors discuss the importance of providing an alternative (strengths-based) way of
understanding characteristics commonly associated with AS, and suggest that the
strengths model "stand alongside and complement this traditional deficit model" (p. 70).
Clearly, Winter-Messiers (2007) and Winter-Messiers et al. (2007) provide
counter narratives to those that define students labeled with AS as deficient in the ability
to engage in areas that veer from their topics of interests, and as such driven to
"obsession" (Carrington & Graham, 2001). Instead, they recast that deficit narrative into
terms that allow readers to see the significant meanings these interest areas bear on
students' lives in school and on their identities. Interpreting students labeled with AS as
capable, these scholars diverge from traditional representations and thus contribute a new
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way of understanding a commonly-referenced issue (intensely engaging in special
interests) at the heart of educating students labeled with AS.
Resisting "Policing" and Being Defined in Deficit Terms
Scholars also portray students labeled with AS in terms of strength and
competency when they highlight how students resist others' attempts to define their
experiences for them. Osier and Osier (2002) discuss the experiences and course of
events that materialized when the younger author, an adolescent labeled with AS (and the
elder author's nephew), was excluded from his school due to a series of epileptic
seizures. School officials concluded that the young man's seizures posed problems that
they did not have the resources to contend with. Excluded at a critical time (during a
period of intense testing preparation), the young man missed the opportunity to share
resources for exam preparations with his peers. The act of exclusion prompted the
student's family to bring to school officials' attention the relationship between the
seizures, stress experienced by the young man due to incessant bullying in school, and a
lack of academic support for challenges he faced in conjunction with AS.
However, school officials cited the medical nature of the problem (the student's
seizures, which they thought were brought on by epilepsy) as an obstacle hindering their
ability to provide the resources to support him fully in school. The authors note: "By
medicalizing his 'problem', the staff effectively absolve themselves from professional
responsibility for his learning and welfare in school" (p. 52). In light of what they
considered to be an injustice, the authors argue the importance of including student voice
in research:
89
There are a number of arguments as to why children's views and perspectives should
be incorporated into educational research, scholarship and practice. Interviews with
young people from marginalized groups. . .have sometimes challenged the assumptions
of education professionals concerning these groups, (p. 38)
The younger author, in a statement directed at school officials outlining his viewpoint,
conveys the source of his frustration in light of the events:
I feel offended that the school has not asked me for my opinion on what I need. For
this reason I have written this paper setting out my viewpoint. I have tried to do this
politely, but I realize that it might be difficult for some teachers to accept, because my
perspective is so different from theirs, and at this stage I feel very frustrated. I want to
learn but that right has been denied, (p. 42)
Asserting that school authorities hid behind the cloak of medicine to free them of the
responsibility to educate the young man in a way that is considerate of his unique needs,
the authors point to a trail of injustices. Thus, through the act of writing (both in a letter
to school authorities as well as the scholarly article), the authors highlight an instance
wherein a young man labeled with AS instated his ability to stand up to injustices that he
incurred. The process by which he asserted himself, through clearly communicated
ideas, wishes and thoughts on matters related to being, in Biklen's (2005) term "policed,"
(p. 72) allowed the younger author to specifically highlight an instance wherein he
engaged relevantly and attributed a ToM.
Similarly, Hay and Winn (2005) describe how a young man labeled with AS who
participated in their study resisted being defined in deficit terms. Being called "mental"
(p. 148) by a peer spurred the young man to put the offending classmate in a "head lock
until he said sorry" (p. 148). Reciprocating the classmates' hostility, this young man sent
the unmistakable message that he could engage on par with his peer. In asserting his
agency, this young man illuminated an instance wherein his response to his peer's
patronizing remark was nothing short of relevant.
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Illuminating instances wherein students responded to adverse social
circumstances, scholars show how environmental features play an integral role in how
students labeled with AS are perceived by others. Attending to the point of view of the
student allows for a shift from a sole focus on the students' assumed "problems" and
allows readers to see the relevant manner in which students labeled with AS assert
themselves in social situations. While the previous two cases reflect negative school
experiences that students with AS contended with, scholars also portray students in terms
of competencies by illuminating how students define what is right for them in terms of
educational practice.
Illuminating how Students Define what is Right for Them
Humphrey and Lewis (2008) found that schooling is a grim experience for many
students labeled with AS in inclusive schools (for instance, they note that such students
are frequently bullied, stressed out, socially isolated, depressed, and anxious). However,
by virtue of attending to the perspectives of students so labeled, the authors gained
insight into some elements of schooling that appear to aid students' ability to feel
genuinely included in school.
As referenced in the earlier review of scholarly work at the intersection of AS and
schooling, these authors share how the "subtle" (p. 39) presence of special education
support staff enabled students to avoid sticking out as "different" (most of the students,
having been bullied etc. interpreted "difference" negatively, p. 38). In addition, students
informed authors that a primary way that they protect themselves from bullying and other
forms of victimization is through the support of friends. Thus, Humphrey and Lewis
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(2008) position these youth as competent "stakeholders" (p. 42) who are able to help
define the educational practices that support their feelings of inclusion in school.
In that within the studies reviewed here, students labeled with AS are positioned
as competent in a variety of ways, scholars have contributed to a narrative on AS and
schooling that diverges from traditional narratives that engage primarily deficit
conceptualizations. Again, while most of the scholars represented in this section still rely
upon deficit views of AS (with the exception of Winter-Messiers and Winter-Messiers, et
al.), they incorporate views of competency and as such, evidence a shift in thinking about
the meaning of AS in regards to schooling.
In terms of pursuing understandings of AS that are informed by the perspectives
of students so labeled, I position this dissertation within this particular subset of work.
However (akin to Winter-Messiers and Winter-Messiers, et al.), I explicitly engage a
competency-based stance. This stance, which I specifically assert though attending to
students' counter storytelling, is the defining element that distinguishes this dissertation
from most of the work reviewed in this section. In the present study, I ask broad
questions that beckoned students' insights around school participation and their
identification of meaningful issues therein, while exploring how a variety of confluences
informed their evolving adolescent identities. In doing so, I sought to invite opportunities
where students could interpret AS in their own terms, rather than necessarily interpreting
them in light of notions of /«ability as inscribed in the DSM.
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Eight Majoritarian Narratives
Interestingly, during data analysis, and particularly in light of participants'
interviews, it struck me that the students were "speaking to" particular narratives that I
had encountered in my initial review of the literature on AS. In response to this
realization, I decided to conduct a purposeful textual analysis of literature on AS that
bore relevance to schooling with aims of identifying narratives that scholars relied upon
and regularly cited. In doing so, I conducted searches for scholarly work that centered on
school-related issues and students labeled with AS (sometimes referred to in the literature
as "high functioning" autism). As I reviewed this body of work, I realized that scholars
regularly discussed students in terms of criteria outlined in the DSM: that is, in terms of
their assumed lack of social and emotional abilities. Scholars further cited students' lack
of a ToM as an issue at the heart of many of the problems they encountered in school.
Thus, in response I conducted a textual analysis of the criteria for AS as outlined in the
DSM-IV-TR and searched for and analyzed literature on AS and ToM as well.
As discussed comprehensively throughout this chapter, my analysis revealed that
the bulk of scholarly work on AS, schooling, and ToM relies upon and reiterates the
DSM-IV-TR definition for AS. Therefore, this particular (deficit-based) definition
constitutes a primary source ofnarratives about AS. While I glimpsed competency-based
conceptualizations of AS in a small portion of scholarly work, they represent a whisper in
a conversation predominated by deficit-driven conceptualizations. Thus, these
competency-based narratives, including those within Hans Asperger's work, do not
currently constitute majoritarian narratives.
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The textual analysis allowed me to identify eight particular narratives (outlined in
Tables 1 and 2) that scholars rely upon and reify continuously in respect to AS and
schooling. This identification set the backdrop against which I then proceeded in
analyzing the various ways the students engaged with ("spoke to") common
conceptualizations, or narratives, about what it means to be labeled with AS. The specific
narratives circulating in discussions around the topic of AS and schooling convey that
students labeled with AS: 1) are deficient in the ability to connect socially with others; 2)
lack the ability to imagine and create; 3) lack the capacity to appreciate humor; 4) are
inflexible, rigid, and dependent on routines and predictability; 5) are deficient in the
ability to engage relevantly; 6) lack the ability to take the perspective of others (attribute
a ToM); 7) are emotionally blunt and stiff; and 8) are deficient in the ability to engage in
areas that veer from their particular interests, and as such, are driven toward "obsession."
These eight narratives are represented in Tables 1 and 2 and are accompanied by
direct quotations from a sampling of text sources (texts represented in the table are not
exhaustive of those reviewed in this chapter) on AS and schooling and AS and ToM that
highlight instances of their (re)iteration (Table 1), and the DSM-IV-TR criterion from
which they emanate (Table 2).
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Table 1: Eight Majoritarian Narratives and Source References
Narrative
1 . Deficient in ability to connect socially
with others
Source References to Narrative
• ". . .children and youth with AS are
thought to be socially stiff, socially
awkward..." (Myles & Simpson, 2001,
P- 2)
• "Further criteria [for an AS diagnosis]
included significant impairment in
nonverbal behaviors such as... failure
to develop appropriate peer
relationships" (Elder et al., 2006, p.
637)
• "Among characteristics of children
diagnosed with Asperger syndrome
(AS) are difficulties in social
communication" (Bellon-Harn &
Harn, 2006, p. 1)
• "Profound impairments in social
interaction are among the defining
features of Asperger's disorder"
(Scattone, 2008, p. 395)
2. Lack ability to imagine and create
• "Such children have difficulty with
imaginative skills" (Harbinson &
Alexander, 2009, p. 11)
• "Creativity and imagination are
characteristics which are not usually
expected to be found in individuals
with autism/Asperger syndrome"
(Lyons & Fitzgerald, 2004, p. 527)
• "As would be predicated from the
clinical literature, an overall
impairment in creativity was found in
children with autism and AS" (Craig &
Baron-Cohen, 1999, p. 321)
• ". . .deficits in social interaction, social
communication, and social
imagination (e.g. flexible and creative
thinking), are clearly present in all of
95
our adolescent interviewees" (Marks et
al, 2000, p. 12)
3. Lack capacity to appreciate humor
" The child had no sense of what is or
is not funny-no sense of humor"
(Dina, 1999, p. 37)
"On the basis of the requirements of
humor comprehension, it is a
reasonable hypothesis that individuals
with Asperger's syndrome or highfunctioning autism may have difficulty
with humor comprehension" (Emerich
et al, 2003, p. 254)
"Research has shown that individuals
with Asperger syndrome are impaired
in humor appreciation" (Lyons &
4. Inflexible, rigid, dependent on routines
and predictability
Fitzgerald, 2004, p. 521)
". . .children and youth with AS are
thought to be socially stiff. . .and
inflexible..." (Myles & Simpson,
2001, p. 2).
"There needs to be consistency among
all staff in the use of direct and
unambiguous directions. . ." (Connor,
2000, p. 294)
"Building on their preferences for
predictability, order, and consistency,
routines and schedules can also
5. Deficient in ability to engage
relevantly
provide structure for students with
Asperger's syndrome" (Simpson &
Myles, 1998, p. 150)
"In short, persons with AS rely on
ineffective thinking strategies to
process information" (Bock, 2007, p.
259)
"...interventions may need to include
strategies for enhancing the specific
social skills of co-operation,
assertiveness, and self-control"
(Macintosh & Dissanayake, 2006, p.
1075)
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"The present study was designed to
assess the effectiveness of a Social
Story treatment to improve the
lunchtime eating behaviors of an
adolescent diagnosed with Asperger
syndrome" (Bledsoe et al., 2003, p.
6. Lack ability to take perspective of
others
290)
"In essence this hypothesis (ToM)
states that individuals with ASDs fail
to impute mental states to themselves
and others and that this deficit is
expressed as a failure to take other's
mental states into account" (Kaland,
Callesan, Moller-Nielsen, Mortensen,
& Smith, 2008, p. 1113)
"Individuals with autism spectrum
disorders demonstrate a fundamental
difficulty in mentalizing about their
own as well as other people's
intentions and beliefs and emotions"
(Shamay-Tsoory, 2008, p. 1451)
". . .children with Asperger's manifest
an inability to 'mind read' or have a
'theory of mind'" (Little, 2002, p. 58)
"Theory of mind deficits are
characteristic of autistic disorders"
7. Emotionally blunt and stiff
(Carrington & Graham, 2001, p. 42)
"Further criteria [for an AS diagnosis]
included significant impairment in
nonverbal behaviors such as . . .lack of
spontaneous seeking to share
enjoyment and lack of
social/emotional reciprocity (i.e.
sharing interests, achievements, etc)"
(Elder et al., 2006, p. 637)
"Difficulty with social/emotional cues,
in which the person with AS does not
perceive or decode facial expressions,
body language, intonation, or other
social conventions" (Henderson, 2000,
p. 29)
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• "... children and youth with AS are
thought to be emotionally blunted,
self-centered..." (Myles & Simpson,
8. Deficient in ability to engage in areas
that veer from particular interests
2001, p. 2)
• "Students with AS may. . . focus on
subjects of interest and often want to
continue these subjects even when the
teacher tells them it is time to switch to
another topic" (Gibbons & Goins,
2008, p. 348)
•
"... interests tend to be intense and
obsessional" (Harbinson & Alexander,
2009, p. 12)
• "Children with Asperger syndrome
have a tendency to focus on one
particular interest to the exclusion of
all else" (Carrington & Graham, 2001,
p. 42)
•
"An obsessive fixation with a behavior
or certain object is a distinguishing
characteristic of Asperger's" (Little,
2000, p. 58)
Table 2: Eight Majoritarian Narratives Emanating from DSM-IV-TR Criterion
DSM-IV-TR (2000) Criterion
"Qualitative impairment in social
interaction" (p. 84)
Majoritarian Narrative
Deficient in ability to connect socially
with others
Deficient in ability to engage
relevantly
Lack ability to take perspective of
others
"Restricted repetitive and stereotyped
patterns of behavior, interests, and
activities" (p. 84)
o Lack ability to imagine and create
o Lack capacity to appreciate humor
Deficient in ability to engage in areas
that veer from particular interests
Emotionally blunt and stiff
Inflexible, rigid, dependent on routines
and predictability
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The identification of these eight narratives provides a foundation for the analyses of
students' participation and representation of life in school (individual and collective) in
chapters four through seven. While these narratives are overwhelmingly deficit-based,
this dissertation shares methodological parallels with several key studies that are also
defined, at least in part, by a commitment to a competency-based stance. I discuss these
studies, which like this dissertation, are interpretivist and guided by a DS conceptual
framework, in the following section. In doing so, I illuminate how this dissertation
contributes to the field of AS specifically and DS generally.
Paradigmatic, Conceptual, and Methodological Parallels
Research carried out in an interpretivist vein allows one to locate new ways of
understanding phenomena, namely from the viewpoint of participants (Ferguson,
Ferguson, & Taylor, 1992; Heshusius & Ballard, 1996; Klotz, 2004). One way that
interpretivist studies garner rich insights is through the showcasing of "stories," from the
perspectives of a variety of participant viewpoints (e.g. teachers, community members,
students, the researcher her/himself). Much work in the field of DS has taken such an
approach, and many are exemplified in a collection of studies compiled by Ferguson,
Ferguson, and Taylor (1992). Bogdan and Taylor's work on "the social construction of
humanness" explores the perceptions of "nondisabled people who do not stigmatize,
stereotype, and reject those with obvious disabilities" (p. 275). The collection also
traverses terrain such as the collaborative role of professor/schoolteacher relations in the
conduction of an action research project (Davis & Ferguson); explicating the complex
layers of meaning that accompany the implementation of mainstreaming for deaf students
99
(Higgins); investigating the integration of "autistic students" in inclusive settings
(Ferguson); and discerning areas of personal competences of an adult with Down
syndrome living in an institutional facility (Goode). Threaded throughout the studies is a
consistent integration of dialogue between the researcher(s) and those who are
researched-- as manifested in blocks of narrative, interview excerpts, and detailed
descriptions of observed phenomena.
Used in combination with DS, interpretivist research carves a space for the
provision of counter narratives to prevailing discourses that have traditionally
undermined participants' "status as human beings" (Klotz, 2004, p. 94). The following
researchers have demonstrated a firm commitment to fore fronting the perspectives of
individuals labeled with disability in their work. Further, they share many of the
paradigmatic, conceptual, and methodological structures that frame this study, and as
such have particular salience in illuminating how and where it fits in with this specific
research tradition.
Julie Allan's (1999) research contributes to an understanding of issues central to
the lives of students labeled with disabilities and their non-disabled peers in mainstream
school settings. Using Foucauldian "tools"- constructs such as power and surveillanceto structure, analyze, and interpret data culled from student interviews and observations,
Allan draws on the power of narratives to communicate the saliency of several themes.
Ofparticular significance to her work is the idea that students with disability labels
attempt to transgress the limitations imposed upon them. Transgressions are often
responses to societal forces (e.g. media publicity, p. 51), specific institutional players,
especially teachers who frame students primarily as in "need" of special services (p. 60),
100
and non-disabled peers who act as "gatekeepers" for "sanctioning or prohibiting
particular actions" (p. 31).
Articulating the theme of transgression, Allan argues that deficit attitudes such as
those shared by many institutional players, work against students' holistic conceptions of
themselves. Her analyses are as illustrative of her perspective as they are of the
participants', and thus her interpretations of their experiences are clearly co-constructed
and inductively presented. In maintaining a dialogue characterized by open-ended
interview prompts, Allan maintains a relational stance of trust to the students, and in
doing so remains committed to understanding the multiplicity of their perspectives.
While affirming the relevance of instating participants' humanity, Allan's work is a
verification of the rich potential of showcasing participants' "stories" in special education
research.
Also researching within the intersection between participation and educational
contexts, Chris Kliewer's (1998) work on the schooling of students with Down syndrome
problematizes traditional conceptions of intelligent communication. In observing
students in their classrooms, supplying anecdotes, and interviewing teachers about
students' participation, he pinpoints how given interpretivist groundings, one can
conceptualize the nonconformist ways in which students with Down syndrome participate
in school as authentically communicative and relevant to the ways in which they
experience the world. In doing so, Kliewer forefronts the importance of broadening
interpretations of intelligence, and denotes several extraordinarily perceptive teachers
who demonstrate through their actions and words the value of "believing in a child's
mind" (p. 83). In addition, he references how attitudes and conceptualizations of human
101
worth, as expressed within local and school cultures, can shape the quality of reception
that individuals with Down syndrome experience in their daily lives.
Like Kliewer, Biklen insists on the power of espousing a worldview that
inherently affirms the participation of individuals with disabilities as intelligent, and
particularly for those whose impairments surround issues of verbal communication. In
his text co-authored with adults labeled as autistic (2005), he uses the phrase "presuming
competence" to indicate a deliberate stance that counters objective assumptions of
/«competence historically ascribed to individuals so labeled. This term parallels Goode's
(1984) idea of "radically different identities" (p. 229, as cited in Klotz, 2004, p. 100) used
to explain how, given differing epistemological orientations, one may come to understand
disability as an inherent state of deficiency, or as a way of being human in the world,
complete with competencies and vulnerabilities.
The relevance of Biklen' s (2005) study to educational inquiry is clear. Reliant
upon the stories that his co-authors tell about their lives, Biklen' s work hinges on the
multiple interpretations that spring genuinely from the diversity of included viewpoints.
Of particular salience to this work is the variety with which the co-authors share their
thoughts, and the way that those representations of communication—via their paintings,
typed text, and poems—are assumed to be unassailably acceptable representations of
communication. In and of itself, a presumption of competence stance, as demonstrated in
the display of co-authors' representations of meaning-making- and thus intelligenceopens up spaces for democracy and inclusion in disability research.
The glue that binds these studies together is clearly the concerted decision each
makes to claim a vantage point wherein participants are understood to be intelligent
102
human beings who have much to teach. In the tradition that acknowledges that
researchers have plenty to learn from those who live with labels of disability, this
dissertation study joins in the pursuit of broadening simplistic conceptions of AS while
opening up dialogic spaces for students to contribute to the research literature.
Though in this study, as the researcher, I presume the three participants'
competence, it is not assumed that they lack vulnerability; indeed, the inductive quality of
the study is conducive to encountering the complex, contradictory, and genuinely
"messy" nature of being human. It is in the process of understanding the relationships
between student participation, their discussion of significant issues, and their integration
of various elements in their construction of identity that it is possible to understand what
it means, for three students, to navigate school with a label of AS. The study takes
guidance from the recent interpretivist studies in the field of autism/AS (e.g. Broderick &
Kasa-Hendrickson, 2001; 2006) that forefront the voices of, and often establish co-
authorship with (e.g. Rubin et al., 2001; Biklen & Burke, 2006; Broderick & Ne'eman,
2008), individuals labeled autistic or with AS. It also takes guidance from the field of
disability studies, wherein researchers have looked at participation and engagement in
school of students with Down syndrome (e.g. Kliewer, 1998) and from the perspectives
of peers and students with disabilities in inclusive school settings (Allan, 1999).
Focusing on a disability category that is popularly riddled with notions of social
deficit, this study contributes a qualitative, inclusive dynamic to the scholarly research on
AS. By extension, in the broader field of DS, it builds on a dialogue that integrates the
voices of students who are labeled as disabled. In bridging traditionally distinct fields of
study, the research shares a new perspective on AS that is grounded in students' multiple
103
interpretations of their lives in school. In the following chapter, I describe the
methodological elements upon which this study is built.
Ill-- METHODOLOGY
In this chapter, I discuss the methodological elements that structure this study. I
begin with a discussion on the paradigmatic orientation with which I identify. I then
provide a description of the participants, the school contexts, data collection strategies,
issues of reciprocity, strategies of data analysis, methods of presenting the data, and
limitations of the study. I conclude with a final note on the interpretive process.
Paradigmatic Orientation
I work within an interpretivist paradigm and employ qualitative research methods
that are ethnographic in nature: participant observation, in-depth interviewing, and
artifact collection (Denzin & Lincoln, 2003; Marshall & Rossman, 1999). An initial, indepth analysis of literature relevant to the intersection of AS and schooling (in chapter
two) provided the support and foundation necessary to highlight the myriad ways
students represented themselves in light of the eight "majoritarian" narratives previously
outlined. These strategies lent structure to my engagement with the following research
questions:
1) What does it mean to be a student labeled with AS?
a) In what ways do three adolescent students labeled with AS participate in
school?
b) In reflecting upon their experiences participating in school, what issues do
three adolescent students labeled with AS identify as meaningful to them?
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e) In representing meaningful issues, what stories do three students labeled with
AS tell and contribute?
2) How do three adolescent students labeled with AS integrate various facets of
experience such as their personal histories, current and enduring interests, and
perceptions of self to inform their evolving identities?
In addressing these questions, I attend to a twofold aim of a) constructing individual
interpretive case studies, or "portraits" (Dyson & Genishi, 2005; Lawrence-Lightfoot &
Hoffman Davis, 1997) of each participant and b) conducting a multiple case analysis
wherein I identify and discuss themes that emerged inductively across the three cases.
Case study and multiple-case analyses are approaches often used by qualitative
researchers (e.g. Biklen et al., 2005; Collins, 2003; Goode, 1992; Janko, 1992).
A qualitative approach supports the ability to gauge students' perspectives and
specifically the meanings they attribute to various school-based situations and
circumstances. As Denzin and Lincoln (2003) note,
. . .qualitative research involves an interpretive, naturalistic approach to the world.
This means that qualitative researchers study things in their natural settings,
attempting to make sense of, or interpret, phenomena in terms of the meanings people
bring to them. (p. 5)
Likewise, Genishi and Glupczynski (2006) allude to a sense of narrative richness that can
emerge from an engagement of qualitative research, which they distinguish from
quantitative traditions in that:
Qualitative studies are not based on numerical or quantitative analyses. Instead, they
incorporate researchers' interpretations and their views on the phenomena they study
and on what the phenomena mean to the study participants, (p. 653)
Similarly, Marshall and Rossman (1999) assert that "Qualitative researchers are intrigued
with the complexity of social interactions as expressed in daily life and with the meanings
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the participants themselves attribute to those interactions" (p. 2). These insights
underscore the idea that meaning, or interpretation, wavers from person to person. Thus,
while I do not seek, as a positivist scientist might (Kuhn, 1996), to generalize or articulate
a singular "truth" about what it means to be labeled with AS in schools, I find value in
the diverse ways in which the participants construct meaning of their school experiences.
The insights students contribute as a result of "interpreting their ever-changing
world" (Williamson, 2006, p. 84) offer opportunities for understanding how the unique
facets of experience and contextual features that each contends with shapes their
worldview in diverse and interesting ways. As such, their contributions can broaden
simplistic notions (such as those that are conveyed in majoritarian narratives) about what
it means to be a student labeled with AS.
While qualitative research traditions are inherently interpretive (Marshall &
Rossman, 1999), as Ferguson, Ferguson, and Taylor (1992) highlight, all types of
research traditions might be described as such. These scholars note four tenets that
define an interpretivist paradigm. First, "Reality is created and social: ... Interpretivists
generally believe that in some sense reality is always a process of social construction" (p.
4). Second,
A split between subject and object is impossible: . . .At the heart of the interpretive
paradigm is a fundamental challenge to the subjective/objective dualism embedded in
Western culture. If everything is unavoidably "subjective," then the dichotomy itself
becomes misleading, (p. 5)
Third, "A split between fact and value is impossible: . . .Facts are not only the products of
social constructions; their production never occurs in a moral vacuum. . .Facts do not
simply imply values, they are values" (pp. 5-6). Fourth,
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The goal of research should be interpretive understanding: ...The goal of research
within the objectivist paradigm is to "describe, predict, and control". . .Instead of
"describe, predict, and control," the goal of interpretivist research might be described
as "describe, interpret, and understand." (p. 6)
These tenets affirm that to be human is to understand the world subjectively, that
is, from a particular vantage point. Attending to diverse vantage points can expand
conceptions of phenomena, and lead to an array of different "stories" about the
phenomena, as Ferguson, Ferguson, and Taylor (1992) note:
All individuals have their own particular stories. However, it is your telling of your
stories that best reveals how you really make sense of your world; which stories you
choose to tell about your life; what words you use; to whom you tell your tales, (p. 2)
The participants in this study represent three distinct vantage points, though they share a
common label of disability (AS). The "stories" that each tells thus evidence diverse sets
of values, goals, and ways of perceiving oneself and the world around him or her. I shift
now to a brief description on the participants and the nature of my relationship with each.
The Participants
I purposefully sampled for two to four students who shared the following
characteristics: a) were classified with AS, b) attended middle or high school, c)
exhibited genuine interest and potential for commitment to the research, and d) conveyed
the level of comfort and facility with verbal expression necessary to carry out interviews
and specifically to explicate their ideas, thoughts, and representations through speech.
For purposes of exploring students' participation in their schools in some depth, the study
benefited from keeping the number of participants to a minimum. Since the study
spanned a six-month period (October 2007-March 2008), the participants needed to
demonstrate the potential for sustaining the energy and interest level necessary to engage
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in the research for this period of time, which constituted a significant portion of the
school year. Locating participants who met these needs was aided by the connections I
made over the years as an educator of students labeled autistic and AS in schools in a
large, metropolitan, urban center in the northeastern United States. The participant
selection was thus one of convenience. Two of the participants, Alex and Victor, are
young men who, in their upper elementary years, were my former students. It is therefore
worthwhile and significant to mention that I knew them well; they first expressed interest
in participating in the study in the fall of 2005, when I began my pilot study research. It
was then, at an elementary school reunion, that I invited several students to join a
research project that looked particularly at learning contexts and feelings of
empowerment. Of those students who were present, Alex and Victor showed enthusiastic
interest and participated thoughtfully in that study.
One of my colleagues as a special educator introduced me to her daughter Susan,
the third participant in the study, several years ago. As such, I had been in acquaintance
with Susan for a substantial period of time. Though I did not know Susan in the dynamic
of teacher-student as I did Alex and Victor, she and I had communicated by way of email
prior to the beginning of the study, and had a basic foundation of familiarity and some
shared history with which to continue building rapport.
In focusing attention on the history and relationships I had with the participants, I
concur with Valenzuela (1999) who affirms the value of tapping into existing familiar
relationships to build deeper understanding of students' lived realities. In her
ethnographic work in high schools located in towns that straddle the U. S.-Mexican
border, she specifically notes that "sustained reciprocal relationships between teachers
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and students [are] the basis for all learning" (p. 61). Likewise, Holstein and Gubrium
(1995) attest to the value of having an understanding of participants' backgrounds,
noting, "The interviewer's background knowledge can sometimes be an invaluable
resource for assisting respondents to explore and describe their circumstances, actions,
and feelings" (p. 45).
Since I purposefully selected participants with whom I had prior relationships, as
a matter of pragmatic and economic interest, the participants did not represent
demographic diversity: they were all from white, middle class backgrounds. This is, as I
describe in a later discussion, a notable limitation to the study. Nonetheless, although the
participants shared these cultural qualities, the ways they experienced life in school, as
nuanced by elements such as school contexts, identity, and specific interests, evidenced
distinct perspectives. I turn now to discuss the school contexts in which I researched,
wherein I specifically address the process by which I negotiated entry to the sites.
The Schools
The participants all attended high schools in a large, metropolitan, urban center in
the northeastern United States. Two participants attended a specialized, private middle
and high school for students labeled with language-based disabilities. The other
participant attended a large public high school that attracts students with a focused
interest in the arts.
Negotiating Entry
Providing the school sites with appropriate consents and IRB paperwork was an
important and crucial task in building trust and rapport with officials at the sites (Dyson
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& Genishi, 2005). I anticipated that negotiating entry into one of the school sites, the
public school, would necessitate delicate communication of my research intent and
purposes. In reality, it was a process that did indeed require a significant commitment of
time to locating an individual with whom I could direct my questions and requests for
scheduling observations. Locating a contact person was accomplished through a series of
emails and phone calls to school administrators wherein I explained my study and wish to
conduct research with a student in their school. Sending emails and making phone calls
proved to be an effective way to establish a relationship with an administrative assistant
in the principal's office. As Dyson and Genishi (2005) note, ". . .permission-granting is a
critical first step" (p. 61) in the process of establishing relationships with individuals that
I would be in frequent contact and communication with.
Through the process of building rapport, it was essential to remember the value of
remaining mindful of the school officials' time and concerns when encountering the
"typical bureaucratic barriers to gaining access" (Marshall & Rossman, 1999, p. 88). I
followed the same protocol in gaining entry to the private school, though this process
took longer than I had anticipated as well. Again, eventually finding a reliable contact
person, who also happened to be an administrative assistant, proved to be the key to
gaining access. Upon receiving the city's Board of Education and the university's IRB
approvals, I sent or hand-delivered copies to the school administrators' offices.
With permission-granting and IRB paperwork established and in place, I then
began the data collection phase of the research. I shift now to a discussion on each of the
strategies I employed—participant observation, in-depth interviews, and artifact
collection.
Ill
Data Collection Strategies
During the research months, I engaged in participant observation, in-depth
interviewing, and artifact collection, forms of data collection that "form the core of
qualitative inquiry—the staples of the diet" (Marshall & Rossman, 1999, p. 105). As a
participant, I immersed myself in students' schools and local communities (e.g. places
they liked to go to eat; on public transportation, and on familiar streets walking between
school and home) in order to "see, hear, and begin to experience reality as the
participants do" (Marshall & Rossman, 1999, p. 106). My impressions about participants'
realities were also informed by directly observing them in a variety of school contexts.
On average, I observed students once every two weeks and typically followed
observations with in-depth interviews on those same weeks. Direct observations allowed
me to record, via field notes, "complex actions and interactions" (Marshall & Rossman,
1999, p. 107) in which the students were enmeshed. In-depth interviews were tools that
enabled my ability to understand how the participants interpreted a variety of schoolbased scenarios. I interviewed participants in comfortable and convenient locations;
usually, they took place in neighborhood eateries after school, and participants always led
the way regarding where she or he wanted to conduct the interviews (thus, none chose to
interview on the school premises). One student chose to interview at my home. In
addition to participant observations and in-depth interviews, I collected several pieces of
artifacts such as work samples and artistic representations of learning that students
deemed representative of their meaningful engagement with life in school.
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I worked to maintain flexibility during the months of data collection. Marshall
and Rossman (1999) state the importance of keeping a flexible study design in the
process of planning and collecting data, suggesting that "the researcher....reserve[s] the
right to make modifications in the original design as the research evolves" (p. 56).
Keeping the observation schedule flexible supported my ability to maintain a sense of
openness to opportunities to see students in a variety of settings. For instance, sometimes
there were occasions to observe school activities that were unexpected, such as a
student's participation in her end-of-term drama performances. I was able to attend such
activities because flexibility in the schedule was maintained—often, these activities
occurred outside of the typical class schedule.
Likewise, interview questions were open-ended and semi-structured (Merriam,
1998) and evolved from observations made during the school visits. In addition,
educational artifacts were collected with the participants' interests in mind: I asked them
to choose artifacts that they felt were representative of their engagement with some
aspect of their life in school in an effort to facilitate discussions about meanings they
attributed to learning contexts.
A lesson that I learned during the pilot study was that interviewing the
participants in interviews only twice during the semester allowed too much time to elapse
between visits. The period of time that passed between interviews resulted in
conversations that at times felt strained, as though they lacked in concrete (school-based)
substance to refer to. Dyson and Genishi (2005) note the value of researchers and
participants sharing "a common reference point," (p. 77) such as a classroom-based
activity that transpired during an observation. Thus, in designing the dissertation study, it
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was important to think through ways to improve the quality of communication that the
participants and I came to the conversation with. One feature in aiding this transition was
increasing the number of observation visits to eight and the interviews to seven; another
feature was aiming to consistently schedule interviews that directly followed observations
with the students. While I aimed to conduct eight interviews (the same number of
observations), I ended up (invariably due to trying to schedule interviews around exam
preparations, rehearsals, and holiday commitments) collapsing two observations' worth
of questions into one longer interview at one point in the study for each participant. In
light of this modification, I pored over the transcripts to ensure that each student had
offered ample information and insights to enable a comprehensive response to the
research questions.
I found that seven interviews' worth of dialogue for each participant yielded rich
and abundant data that did indeed enable my ability to respond to the research questions
comprehensively. I collected approximately eight hours of audio taped data per
participant, yielding an average of 1 15 pages of transcribed data per participant.
Together, observations, interviews, and artifacts coalesced to create, through inductive
analysis, holistic portraits of the participants' ideas on their school engagement and
evolving identities.
Participant Observation
Learning about students through participation, or an immersion in their schools
and surrounding communities, happened through walking to or from classes with
students, conversing with other students, teachers, or administrators; spending time with
students on the train or on the streets walking from school to home; and in eateries and
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cafes in which they frequented. This immersion allowed for a glimpse at the daily
rhythms that each student relied upon, and contributed to an understanding of the role of
out-of-school contexts in the quality of students' participation and engagement.
Observing students directly in a variety of school contexts provided a repertoire of
discussion points for interviews with the participants. Holstein and Gubrium (1995) claim
the value of referring to interactions and incidents in which both the participant and
researcher are present:
As the interviewer becomes aware of the circumstances of respondents' activities and
circumstances, he or she can refer to those circumstances as a way of linking the
respondent's experiential location to the researcher's more conceptual issues and
questions, (p. 46)
An example of referring to "circumstances as a way of linking. . .to the researcher's more
conceptual issues and questions" is when I asked a participant about his thoughts on a
design project that I observed him working on in his computer art class with apparent
enjoyment. Referencing this instance, I hoped to understand if and how he attributed
meaning to the process of engaging in this particular project.
I typed my observational field notes on my computer, using a template structured
by observations and observer's notes (see Appendix B). At the top of the template, I
noted the date, timeframe, and specific context of the observation. The observation
section of the template allowed me to record physical characteristics of the environment
(including the location of the participant in that environment), class or setting-specific
information such as the content of study, and the activity in which the class was engaged.
I also used this part of the template to record direct quotations that involved the
participant and to draw a sketch of the physical arrangement ofthe space. In the space
for observer's comments, I wrote my personal responses and emergent qualitative
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analyses to the descriptive observations and quotations/dialogic interactions that I had
recorded on the observation portion of the page. Within these comments, I began
identifying inductively-developed themes.
During each visit, I observed participants for approximately two hours at a time
for the duration of the study (I typically observed two periods per visit and each period
was about one hour long), however I often arrived early or stayed late in order to make
contacts with others (e.g. administrators to schedule observations or to just check in; to
introduce myself to teachers before the class period began; to talk with teachers after the
class period ended). In instances that I arrived early, I often was able to walk with
students between their classes and have casual conversations with them. By the end of
the data collection phase, I had collections of running records that captured some of the
dialogue and thick descriptions (Geertz, 1973; Marshall & Rossman, 1999) of observed
contextual interactions involving the participants. Observations took place in school
settings such as classrooms, assembly spaces, lunch locations, physical education
gymnasiums and school-based "extra" curricular activity locations. In serving as a way
to record concrete interactions in which the participants were a part, observation field
notes aided my efforts to capture a "holistic description of events and behavior"
(Marshall & Rossman, 1999, p. 107).
In order to take detailed field notes, my aim during direct observations was to be
unobtrusive; however, sometimes teachers elicited my thoughts and involvement and I
thus engaged in class discussions in which I was observing. I therefore remained
flexible in terms of my role as an observer, and remained open to possibilities for
participation if/when teachers seemed interested in my involvement. The purpose of my
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visits to the schools was first to locate "broad areas of interest" (Marshall & Rossman,
1999) that elucidated a variety of examples of engagement. In an effort to observe a
variety of forms of participation, I was interested in spanning my observations from
highly academic subject contexts (e.g. history class, literacy class) to those that were
more loosely structured (assemblies, lunch hours) in order to approximate a level of
comprehensive understanding of the different ways students approached varied aspects of
their lives in school. In the context of "free" or unstructured time, such as the time spent
walking from class to class or during a lunch hour, my participation was more
conversational, and I subsequently jotted down detailed notes (my head notes) of my
participation and observations as soon as it was possible following these events.
Interviews
I align my role as an interviewer with Holstein and Gubrium's (1995) description
ofthe "active interviewer," that is one who co-constructs meanings and mutually
interprets phenomena within the act of conversing with another person/other people.
This conceptualization contrasts conventional models of interviewing where interviewers
are positioned to "uncork the vessel"—that is, assume the passivity of "subjects" who
have a "sealed cache of opinions and emotions" (p. 28). Thus,
. . .the active view eschews the image of the vessel waiting to be tapped in favor ofthe
notion that the subject's interpretive capabilities must be activated, stimulated, and
cultivated. . .This is not to say that active interviewers merely coax their respondents
into preferred responses to their questions. Rather, they converse with respondents in
such a way that alternate considerations are brought into play. . .The objective is not to
dictate interpretation but to provide an environment conducive to the production ofthe
range and complexity of meanings that address relevant issues, and not be confined by
predetermined ideas. (Holstein & Gubrium, 1995, p. 17)
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Taking an active approach to interviewing, I was positioned to follow the lead of
students' "spontaneous," "improvisational," (Holstein & Gubrium, 1995, p. 17) or
seemingly tangential contributions to discussions.
I began interviews with aims to reconnect with students after having been out of
touch for some time. Due to scheduling constraints and some bureaucratic obstacles that
included locating specific contact people that I could rely on for scheduling observations,
I began the study at the beginning of October of 2007. In order to enter the research field
with some insight into the mindsets of the students at the beginning of the new school
year, I carved out time during the first round of interviews to reconnect with the students
after a relatively long lapse of contact, which by the time I began the data collection, had
approximated a year. During these early meetings, I asked the students to think about the
initial contexts in which they wanted me to observe them.
With the exception of two interviews, all student interviews were conducted in
person. Susan's schedule was so heavy that at two points, we decided to conduct our
interviews via email. In doing so, I initiated the interview by sending Susan a series of
questions to which she replied over the course of a couple of days. Her responses were as
articulately written as they were spoken, though email interviews yielded more concise
responses from Susan. I followed up her responses with further questions in order to
clarify any points of confusion, to prompt her to flesh out ideas, and to add my own
thoughts to the "conversation." We continued with the back-and-forth email dialogue
and although this worked, we mutually decided that we appreciated the richer quality of
having in-person dialogue.
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During in-person interviews, audio taping freed me to engage in authentic
conversations with the participants. In addition to taping, however, I also kept a
notebook that I used to jot down contextual information, such as nonverbal cues that
accompanied participants' verbal expressions. It was important for me to thoughtfully
participate in conversation with the participants, and therefore I carved time into the
interview schedule to flesh out my head notes once we had completed our dialogue for
the afternoon.
Although the interview questions evolved from the observations that preceded
them, I had questions in mind that helped structure the interviews. Such questions
reflected the broad research questions and were couched in terms that participants readily
identified with. Examples of interview questions that helped to foster rich conversations
regarding school engagement are: a) Tell me about a time when you enjoy(ed)
participating in a class; b) Tell me about a time or situation in school that you find/found
to be challenging; and c) What do/did you learn from these different types of situations?
The participants typically had something insightful to offer in regards to particular
interactions that we could both recall. The formation of contextually-based questions
also warded against "coaxing" (Holstein & Gubrium, 1995, p. 17) responses, or leading
participants to answer in one way or another, and allowed me to openly inquire into what
was going through his/her mind at the time of the interaction.
Again, interviews took place outside of school contexts (e.g. in eateries or in my
home), in a location of the students' choice. When I piloted this approach, I found that
the separation from their school contexts appeared to allow the participants to speak
freely about their thoughts, feelings, and ideas without concern for being overheard by
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anyone from the school. After each observation and subsequent interview, I reviewed my
notes, worked on follow-up and new questions to be addressed during the next round of
interviews, and worked on identifying emergent ideas and themes.
Artifacts
I asked the participants to contribute a select few meaningful pieces of work that
reflected his/her engagement with life in school. Each ended up contributing a different
number of pieces, thus the number of artifacts represented in this study differ from
participant to participant. Artifacts were collected at the students' discretion (e.g. they
were not required to share materials such as journals that they may have considered
private), and students were given the opportunity to contribute any piece of work that
helped them to discuss meaningful school engagement. In addition to representing
elements of schooling that students considered to be valuable for some reason or another
(which students revealed during discussions of their work), the artifacts were also an
additional window into students' creative, imaginative, and organizational abilities.
Thus, as educational artifacts proved to be "rich in portraying the values and beliefs of
participants," (Marshall & Rossman, 1999, p. 1 16) they were an invaluable form of data
that supported by ability to construct interpretive portraits of each.
Students gave generously of their time during the months of the research. The
time of data collection coincided with their midterm and final examination schedules,
which is to say each negotiated a full schedule in addition to participating in this research.
Reciprocity was called for, and in light of these students' age and the individualized time
each was taking from their busy schedules, consisted of monetary payment. I discuss this
issue in the next section, along with the ways in which I reciprocated the support that
teachers contributed to the study.
Reciprocity
Marshall and Rossman (1999) iterate the value of reciprocity in the engagement
of research, noting,
People may be giving their time to be interviewed or to help the researcher understand
group norms; the researcher should plan to reciprocate. When people adjust their
priorities and routines to help the researcher, or just tolerate the researcher's presence,
they are giving of themselves, (p. 90)
With these insights in mind, I paid each participant either 15 dollars per interview or a
100 dollar gift certificate to a bookstore at the end of the study. Since the participants
were all teenagers, monetary payment seemed like a relevant and attractive option; in
fact, the two students who participated in the pilot study were paid (10 dollars and lunch)
for each interview they gave and reported satisfaction with that form of compensation.
During this study, upon receiving payment after an interview, one of the participants
exclaimed, "My job's awesome!" This expression affirmed the favorability ofthis form
of compensation. The other two participants likewise reported satisfaction with their
method of payment.
Since "qualitative studies intrude into settings as people adjust to the researcher's
presence" (Marshall & Rossman, 1999, p. 90), I wanted to express my appreciation for
those who opened their classrooms and learning spaces to me. I found that many teachers
appreciated having the time to talk, after students had vacated the room at the end of a
period, about the progress or their impressions about the participant with whom I was
working. Some ofthese teachers shared students' work with me, in an attempt to
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highlight the progress the student had made over the course of the year. Others wanted to
engage in dialogue about my insights into what might enhance the learning experiences
within their given classes for the student with whom I was working.
Although I strived to convey sensitivity and interest in the interpretations that
teachers and personnel offered, I did not include their insights in the study. The focus of
this study is on the way that student engagement is understood and imbued with meaning
by the students themselves. Swain's (1993) notation that "Despite the growth of the
disability movement. . .little attention has been given to the say that young people have in
controlling their education. . .They are the recipients (or not) of other people's decisions"
(p. 156, cited in Allan, 1999, p. 1) resonates with the intention to shift the locus of
knowledge-production from those deemed educational "experts" to the students
themselves. Insight from any source other than the participants would have worked
against the intention of the study to center students' interpretations of their lives in
school.
As I have alluded to in this discussion on strategies of data collection, qualitative
analysis was ongoing and inductive (Dyson & Genishi, 2005). I turn now to a description
of my approach to data analysis, both within individual case chapters as well as in the
cross-case analysis chapter. In short, my process of data analysis can be characterized as
recursive.
Strategies of Data Analysis
Marshall and Rossman (1999) note that a typical approach to qualitative data
analysis consists of: "a) organizing the data; b) generating categories, themes, and
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patterns; c) coding the data; d) testing the emergent understandings; e) searching for
alternative explanations; and f) writing the report" (p. 152). While my process included
each of these phases, I found data analysis to be recursive. For example, while the first
phase, "organizing the data" entails "reading, reading, and reading once more through the
data," (Marshall & Rossman, 1999, p. 153) I went back to the data to re-read each time I
needed further clarification on an emergent understanding. If the data did not support an
emergent understanding in a powerful way, I began the process of re-reading the raw data
to discern how I might rethink that understanding. Similarly, the fifth phase, "searching
for alternative explanations" was a process I engaged in the act of writing. As I came
upon alternate reasons for the findings, I enfolded those points of discussion into the
writing. Indeed, my experiences concurred with the idea that "Writing about qualitative
data cannot be separated from the analytic process. In fact, it is central to that process.
(Marshall & Rossman, 1999, p. 157).
A post-observation and interview routine structured my ongoing, inductive
analysis of the data, and included reviewing my notes, adding notes that helped to flesh
out the data, and identifying areas that seemed to bear importance in the students' lives.
The practice of noting areas or issues of importance to students was aided by the
realization early on in the study that during interview discussions, students tended to
share some of the same issues recursively. I interpreted their ongoing discussions of
these issues to be indicative of what they found to be significant and meaningful in their
lives as students. Areas that students identified as bearing meaning on their lives were
integrated into future interview questions and discussion points, to be explored in further
depth or detail. Students' ongoing discussions of particular issues or/and points of
interest were pivotal features in the process of data analysis, particularly in that they
informed the inductive development of themes.
After each observation, I read through my field notes to process the new
information that I had encountered. I fleshed out field notes with any remaining head
notes that were conjured during the read-through. In addition, after each interview, I
jotted down any head notes that I had in regards to the interview itself, for two reasons.
For one, I wanted to write down any substantial or contextual information while the
interview was still fresh in my mind, and secondly, I wanted to write directly after the
interview as a way to process the content and general feeling of the discussion. The
practice ofjotting down post-interview and observation notes also gave me a chance to
write down ideas for the next round of interview questions, which I then refined after the
following observation.
I began transcribing interview tapes during the first months of observations and
interviews and finished after making my eighth visit to each school and carrying out final
interviews. I used a computer program called Express Scribe, and once I had reached the
end of the transcription process and reviewed the typed data, I felt affirmed that the data
would allow me to richly respond to my research questions. In the cases that I needed to
diffuse any doubts or uncertainties encountered in the process of transcribing students'
words, I checked with the students to be sure that my interpretation of the transcription
matched their intended meanings (Tierney & Lincoln, 1997). With the interviews in
written form, I had an additional source of material data to analyze alongside the field
notes and educational artifacts. Referencing all three sources allowed me to discern
themes through inductive analysis.
Once I began composing the data chapters, the first aim of my analysis entailed
reading over data sets to determine how students participated in school; the primary goals
of this portion of the analysis was to articulate the myriad ways that students engaged in
school across a typical day, in a variety of contexts. I referenced observational field
notes and interview transcripts to aid this process. I used Word applications such as
highlighting to demarcate instances of students' participatory styles, and once I had
identified data that allowed me to articulate students' engagement in a comprehensive
way, I began to sketch out the beginning of the data chapter.
Next, to meet the aim of identifying issues students deemed important (which I
conceptualize as "themes"), I proceeded by looking, case by case, at observation field
notes, interview transcripts, and the students' educational artifacts in tandem, carefully
"listening" to students' words and representations. The practice of "listening" required
several close readings of the data in an effort to identify the ideas and issues that the
students found to bear meaning and significance in their lives. Using word processing
tools to structure my organization of data, I created separate files for each student's "raw
data" which included one document containing the three sources of data in written form
(students' final interview transcripts included their discussions about the educational
artifacts, the third form of data, and these transcripts were included in the "raw data"
files). Scanned images of each student's artifacts were kept in separate files, since they
used a great deal of computer memory space.
As I pored through the data sources for each participant, I "listened" to hear
reiterative patterns, to discern issues that were central to the participants' lives in school.
As I engaged this process through a series of re-readings of the raw data, I identified
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ideas that echoed throughout the course of the research for each participant. I then pored
through the data again, this time with an eye toward locating pieces of data that
represented these central ideas, or "themes." To aid the process of organizing data within
the identified themes, I used Word tools such as bold-facing, italicizing, and highlighting
with color. Typically, by the end of this process, I had identified more data than were
necessary to represent the theme; thus, I then began the process of deciding which data
were strongest—that is, which could most richly illustrate the theme. This ongoing
inductive analysis of data is typical to qualitative research (Dyson & Genishi, 2005;
Marshall & Rossman, 1999), and Dyson and Genishi note that "As pieces of data are
organized and compared, as their variable natures are identified and named (or coded), as
their interrelationships are examined, the researcher uncovers new spaces—new holes—
in the portrait of the case" (2005, p. 81). In the process of undertaking ongoing analysis,
holistic representations, akin to what Lawrence-Lightfoot and Hoffman Davis (1997) call
"portraits" began to take form.
Throughout the process of writing up the data, I used the concept of "counter
storytelling" (Solórzano & Yosso, 2002, p. 23) as a tool of analysis. As described in
chapter one, Solórzano and Yosso use counter storytelling in critical race methodology as
a way to disrupt what they term "majoritarian" narratives (p. 29), and likewise, counter
storytelling can be a powerful tool used to disrupt majoritarian narratives about disability.
As described at the end of chapter two, during data analysis, I realized that the students
represented counter-instances or convergences with specific strands of discourse that I
had encountered in my initial review of the literature on AS. In response, I decided to
expand the study's design to include an explicit meta-analysis of the substantive literature
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on AS and schooling and AS and ToM in order to identify these strands, or the prevalent
"majoritarian" narratives that are iterated time and again therein. In doing the textual
analysis, I discerned the origins of these common narratives on AS (the DSM-IV-TR) and
established a reference point from which to understand the myriad ways students engaged
these narratives in their school-based lives (see discussion of eight majoritarian narratives
in following section). Particularly in the first two sections of the data chapters (students'
participation and the themes section), I thought about the data in terms of their ability to
convey counter stories to dominant narratives on AS and schooling.
Finally, to meet the aim of describing how students integrated a variety of facets
of experience to construct identities in the midst of high school, I referenced all three data
sources. I used three lenses through which to describe different aspects of students'
identity, a) peer/friend; b) student; and c) AS/disability, as each bore relevance to the
study. This portion of the data chapters is more reflective than the others. Although I
included new data to flesh out or illustrate ideas, I also relied on previously discussed
data to inform my perspective. This conclusive portion of the chapter serves as a
summative discussion.
Multiple Case Analysis
For the multiple case analysis, I explored and discussed the many ways in which
students "responded" to eight common AS narratives that assume their: 1) deficient
ability to connect socially with others; 2) lack of ability to imagine and create; 3) lack of
capacity to appreciate humor; 4) inflexibility, rigidity, and dependency on routines and
predictability; 5) deficient ability to engage relevantly; 6) lack of ability to take the
perspective of others (attribute a ToM); 7) emotional bluntness and stiffness; and 8)
deficient ability to engage in areas that veer from their particular interests, and as such,
driven toward "obsession."
I identified these narratives in the process of conducting an inductive analysis of
the literature on AS (with particular regards to schooling and ToM) in chapter two. In
supporting my ability to identify the eight narratives, the textual analysis was an integral
element of the research design. The eight narratives provided a structure wherein I
analyzed the ways in which the students engaged with each narrative within his or her
representations of life in school. Each narrative emanates from three central narratives
fundamentally rooted in the DSM. Two of these narratives are aspects of the DSM
classification criteria for AS and the other expands on the DSM narrative that conveys
social and communicative deficit (see Table 2). These three central narratives position
individuals labeled with AS as experiencing: a) "qualitative impairment in social
interaction"; b) "restricted repetitive and stereotyped patterns of behavior, interests, and
activities" (DSM-IV-TR, 2000, p. 84); and c) an inability to attribute a ToM (see BaronCohen, et al., 1985). For this portion of the chapter, I referenced the individual data
chapters to locate instances wherein participants engaged with each of the eight
narratives.
The decisions I made in the process of analyzing and writing up the data
ultimately supported the manner in which I present the findings within the data and
multiple case analysis chapters. I discuss presentation of the findings next.
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Presentation of the Findings
Each case study was written as a distinct portrait of the participants and includes a
culmination of the various data sources to holistically represent: a) students' participation
styles; b) issues that students identified as meaningful (conceptualized as themes); and c)
students' evolving sense of identity. Each of these pieces is presented in distinct sections
(many of which include sub-sections) within the case chapters. Data are presented in the
form of quotations, field note excerpts, interview excerpts, detailed description of events
and phenomena, and reference to educational artifacts. To underscore each participant's
thoughts on meaningful issues (themes), and to convey students' sentiments in regards to
particular areas of discussion within the case chapters, I located quotations within the
transcripts, which served to headline sections and sub-sections. In addition to referencing
educational artifacts within the body of the text, I also include visual representations of
the artifacts (either scanned photographs or scanned work exemplars) in the dissertation.
Doing so allows readers to visually reference the artifacts in light of my interpretations
and descriptions and to construct their own interpretations based on this reference.
For the multiple case analyses, I used the eight majoritarian narratives (discussed
previously) to head the distinct subsections in which I discuss students' collective
"responses" to each narrative. Within these discussions, I referred back to data that I had
previously presented in the various data chapters to illustrate the myriad ways in which
the students engaged each narrative.
While I made the effort to contribute interpretive portraits of the students and
thematic analyses of their collective participation and representation of life in school that
richly illustrate what it means to be a student labeled with AS, the study does bear
limitations. I discuss these next.
Limitations of the Study
Josselson (1993) articulates that an attractive feature of qualitative inquiry resides
in "its holism, by the richness of the data" that is "missing in more distant, variable-based
research" (p. ix). In identifying with this sentiment, I recognize the potential power of
research that delves into the phenomenological experiences of participants. In honoring
the perspectives of the participants in the study, I resist the positivist notion that the
research must be objective and neutral to be relevant and valuable (Ferguson, Ferguson,
& Taylor, 1992). Rather, the study hinges on the value-laden meanings that participants
bring to the discourse about their lives in school, as fortified by their activities and lives
beyond school. In an effort to build trustworthiness (Tierney & Lincoln, 1997) into the
study, the research design incorporates structures that allow for verification of these
elements (rapport building, ongoing discussion, and participant checks).
It is important to note that centering the perspectives of the participants might
suggest that I am privileging their ideas as "true." However, while I believe that their
views are vital ingredients to broadening understandings of AS and schooling, I
understand their ideas to be reflective of their subjective experience, and thus relevant to
their lives, but not of perceived objective "Truth." Honoring students' perspectives
allowed me to pursue the goal of understanding diverse representations of what it means
to be classified with AS. It was my first and foremost priority to understand participants'
divergent ways of knowing, in their actions, words, and expressions, which often led to
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constructive disruptions (in that they veered from essentializing conceptualizations of
what AS "means"). Sometimes, students represented themselves in ways that contributed
to "minority majoritarian storytelling," (Solorzano & Yosso, 2002, p. 28) wherein they
seemed to "buy in" to the predominant narratives that rest upon "nórmate" assumptions
(Garland Thomson, 1997, p. 8). Such cases offered occasion to explore and analyze the
ways that majoritarian narratives impinge on one's evolving sense of identity.
In my role as a researcher, I acknowledge that while my biases are inseparable
elements of the study, they may also be understood as limitations. Specifically,
preexisting relationships with participants might be viewed as problematic in that it may
have been difficult for me to distinguish preconceptions about the students from the new
observations I made in the study. Ongoing writing of head notes helped me to record and
disentangle impressions that I encountered, and proved to be a helpful tool in processing
emotional responses that emerged. On the other hand, the rapport and connections that I
sustained with the participants over the past several years contributed to the ease with
which we engaged in dialogue from the start. Viewed in this light such established
relationships added to, rather than detracted from, the richness ofthe study.
During the data collection stage of the study I was employed part-time as an
instructor and supervisor and therefore needed to consider the time and economic
demands that the study would place on my life. Thus, in matters of logistics and
efficiency, important considerations in planning a study for which one has both limited
time and funding (Marshall & Rossman, 1999), knowing the students prior to beginning
the study saved rapport-building time. Since time and budgetary concerns put parameters
on the type of study I could engage in, I had to contend with the limitations in which I
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worked to build case studies that captured the complexity of three students' lives in
school. IfI had been afforded the time and budgetary allowance, I would have preferred
to carry out a year-long ethnography; however, the choice to do a six-month long project
is a result of the realistic constraints that I negotiated as a doctoral student researcher.
Thus, I acknowledge how the limitations inherent to collecting data over a significantly
shorter period of time than I would ideally have liked to limited the potential for
encountering a level of nuance and depth that can only be afforded by remaining
immersed in the field for a prolonged period of time. I do, however, find value in the
idea that although the study spanned a relatively short period oftime, I have represented
with validity the ways in which the participants engaged in school understanding that:
An in-depth description showing the complexities of processes and interactions will be
so embedded with data derived from the setting that it cannot help but be valid.
Within the parameters ofthat setting, population, and theoretical framework, the
research will be valid. (Marshall & Rossman, 1999, p. 193)
Due to pragmatic constraints and the purposeful sample of convenience, the study
is limited in its capacity to represent a variety of demographic backgrounds. Since the
participants are white and members of the middle class, the study does not attend to the
diverse demographic backgrounds that are inherent to the city's cultural landscape.
Selecting a small and purposeful sample also has an upside. Highlighting an in-depth
look at three distinct individuals who share a classification ofAS alters presuppositions
and essentializing tendencies that cast students labeled with AS as a homogeneous group.
Doing so also elucidates the natural variation inherent to students' participatory modes
and forms of engagement and carves out the opportunity to truly hear with clarity
participants' distinct voices. Indeed, I concur with Biklen who suggests, "Hearing
perspectives that have been less available is imperative from the standpoint that it allows
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for an expanded dialogue with prevailing ideas, and as a matter of equality" (in Biklen et
al., 2005, p. 5). So, while the study strives to expand what it means to traverse school
with a classification of AS, it does not claim to strive to generalize. Rather, exploring the
multitude of meanings that students with a particular label of disability bring to their lives
in school helps to "create a bridge to other life situations," (Josselson, 1993, p. xii) and
highlights similarities between students with and without labels of disability.
Several features supported my ability to engage the interpretive process that was
part and parcel of carrying out this study. I conclude this chapter with a discussion of
these features.
A Final Note on the Interpretive Process
Throughout the research, I maintained active dialogue with participants, and at
times their mothers (namely to help clarify students' murky memories of early school
experiences for purposes of understanding their educational histories). Maintaining
ongoing dialogue was important in light of Denzin and Lincoln's (2003) assertion that
"meaning is negotiated mutually in the act of interpretation; it is not simply discovered"
(p. 302). Furthermore, interpreting the intentions and meanings that participants
constructed for their lives did not require that as a researcher, I deny my own biases or
history, but rather that I embrace the idea that ". . .understanding requires the engagement
of one's biases" (Denzin & Lincoln, 2003, p. 301). Indeed, "narrators often become an
important part of the stories they tell" (Ferguson, Ferguson, & Taylor, 1997, p. 1). The
dialogue that ensued between the participants' various forms of expression about their
lives and me as the researcher certainly shaped the interpretive process. In a similar vein,
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my written interpretations of the participants' meanings reflect the dynamic engagement
of ideas and dialogue that transpired between participants and me, as the researcher,
resulting in a "tonal-texture staging" (Richardson, 1990, p. 39) that evidences the fusing
of participants' voices with my own.
Frequent member checking (Tierney & Lincoln, 1 997) enhanced the credibility of
the case studies by attending to the "truthfulness of the narrative" (Mienczakowski, 1995,
p. 371). A commitment to remaining close to the participants' words and actions, via
quoting them, showcasing interview excerpts, using rich detail to explicate particular
interactions, and reflecting on their non-verbal actions, aided the effort to paint layered
portraits that illuminate the various ways each broadly engaged in school, and
specifically with majoritarian narratives.
While features such as member checking and remaining close to students' words
abetted my ability to interpret participants' representations of self in ways that were
consistent with their views, interpreting students with particular aims to identify instances
of counter storytelling nonetheless poses potential limitations. Namely, it is conceivable
that explicitly seeking instances of counter storytelling might have positioned me to
overlook opportunities to engage alternate explanations or interpretations for students'
actions and insights. However, I believe that in light of the reality that the bulk of
scholarly work on AS and schooling is framed within deficit prose, founded upon deficit
assumptions, and thus perpetuates pathological conceptions about AS, highlighting
divergences from these conceptualizations is an important undertaking, and arguably a
crucial initial step in mobilizing beyond essentialist understandings about the
classification. Thus, in employing the tool of counter storytelling, I risk feeding into
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dichotomous conceptualizations of AS (by illuminating competencies as opposed to
supposed deficits). However, I do take measures that support my ability to mitigate this
risk.
By engaging discussions of "minority majoritarian storytelling" (Solorzano &
Yosso, 2002, p. 28) or instances of conforming to nórmate conceptualizations, I work to
illuminate the competing and conflicting discursive culture in which the students are a
part. In doing so, and as will be apparent in the following chapters, I aim to muddle
illusions of binary (i.e. deficient/competent) conceptualizations and acknowledge how the
students at times engage in minority majoritarian storytelling to their benefit. Thus, I
illuminate how conformity to common ideas for "success" for instance, at times works to
bolster students' conception of self, their ability to meet goals, etcetera.
I move now to the first of the data chapters, where I introduce Susan, and then
present, interpret, and discuss data relevant to her participation in school.
IV-- SUSAN
When I arrived on the 6 floor ofthe high school where Susan 's 4' period class
was located, I initially began walking in the wrong direction. I noted a sign on the
wall with directions/room numbers and as I turned to begin walking in the
direction ofher classroom, I bumped into a young woman who said, "Sorry" and
thenforged ahead without looking up. When I looked to see who I had bumped
into, ¡realized it was Susan! It was such a coincidence, I couldn 't believe that of
all the people in the hallway, this was the person I was here to see. So I said
hello, and she looked as shocked as I was. We walked to Susan 's class together
and chatted as she led us through the corridors teeming with her peers. When I
mentioned that my commute took twice as long as I had expected this morning
and that I had to miss the prior period as a result, she said, "that 's ok " with a
polite smile. Wearing minimal make-up - with the exception ofa prominent
application ofdark eye-liner and a bit oflipstick— and a circular pin affixed to
her shirtfeaturing herfavorite band, Toxic Audio, she seamlessly integrated with
the swarm.
Over the course of six months, my observations and discussions with Susan
revealed her to be a warm, focused young woman who was dedicated to honing the craft
of stage acting as well as preparing for college. Seventeen years old at the time of the
study, Susan's life reflected the dynamic interplay between academics, social life, and
arts-based endeavors that she engaged as a senior in high school, as she steadily gazed
toward the future.
Susan attended an arts-based high school in the midst of the city, where students
are given opportunities to explore, identify, practice, and develop the skills that help to
prepare them for livelihoods that engage their artistic and creative interests. Academic
classes include the core content areas, such as Math, Science, and History, and are, for a
large portion of the school year, structured to help students prepare for state and schoolbased tests. The dedication committed to preparing for exams attests to students' drive to
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do well in order to sustain or improve their chances of gaining access to post-secondary
schools. In arts-based classes, which govern the second half of the school day, students
are expected to pass exams related to the content taught, however there is much more of a
focus on experimentation with varying facets of creative expression. Therefore, class
schedules in these courses do not center test-taking strategies and content that they must
"master" in order to pass exams. Since Susan studied Drama, her classes centered on
practicing the essential tools necessary to prepare students for performances and
auditions. Lessons included voice quality exercises and discussions about students'
experiences with auditions. Alternately, the class period sometimes took the form of a
dress rehearsal for an upcoming school play.
The goals of each class seemed to directly influence students' future
preparedness, and while the high school is a competitive place to get into in the first place
(students must audition to be accepted to the school), students appeared to be noticeably
driven to succeed. They were a focused, participative, and engaged group of youth. In
most classes, there was an atmosphere of mutual respect and professionalism amongst
students and teachers.
Susan's commute from an outside neighborhood means that she relied on the city
public transit system to get to and from school each day. She had been riding the train for
several years to attend schools in the city, beginning with preschool. Prior to going to her
high school, she attended an arts-based public middle school in a different neighborhood
within the city. She also used the rail system to travel between her home where she lived
with her mother and her mother's fiancé in an outer neighborhood, and her father's home
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in the city. Sometimes Susan and I took the train together after interviews, and as a
seasoned city-dweller, she appeared to use this form of transport with ease.
At the time of this study, as a senior in high school, there were many days that
turned to night before Susan made it home, mainly due to rehearsals for school shows and
performances. Though she maintained a schedule that required tenacious dedication to
her goals as a high school senior, future college student and theater actor, Susan rarely
complained (in my presence, at least) about the demands that were expected of her. There
were many days during school-based observations that she expressed her weariness or
appeared to be in a serious, contemplative mood, but she consistently maintained an
engaged stance regarding her school experiences during our interview conversations.
I turn now to an analysis of Susan's participation and engagement in school. In
the three data chapters (of which this is the first), I structure my analysis in a way that
allows for a holistic representation of each participant. This structure is as follows: I first
discuss the participant's school participation drawing from observational field notes and
interview data in an effort to illustrate broadly how she/he interacted within the distinct
and diverse contexts in which I observed her/him. I then move to discussing in-depth the
participant's stories and representations of life in school, a section wherein I focus on the
prominent themes that she/he identified as concomitant with her/his meaningful
participation in school. In doing so, I draw from all three data sources (observation field
notes, interview transcripts, and educational artifacts). Finally, I conclude the chapters
with a summative analysis of the ways in which multiple facets of experience informed
the participant's adolescent identity. In this final section, I discuss identity through three
lenses (peer/friend; student; AS/disability) that the participants employed throughout the
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research, drawing again from all three data sources. Throughout the analysis (though
most heavily in the section wherein I discuss the prominent themes), I borrow from
Solórzano and Yosso (2002) the analytic tool of "counter storytelling" to illuminate how
and when the participant's insights or/and participation seem to conform to or counter
common narratives around AS and schooling. Conceptualizing the data as counter stories
to dominant narratives around AS provides an occasion to see how each participant
negotiated a variety of circumstances in creative and meaningful ways, as she/he
contributes to a unique interpretation of what it means to navigate school with a label of
AS.
While not all of the data shared in this or the other data chapters constitute
counter stories, each piece contributes a valuable facet to the interpretation of Susan's
(and Alex's and Victor's in the subsequent chapters) experiences as a high school student
labeled with AS, and taken as a whole, they represent the potential for mobilizing beyond
essentialist views of AS by centralizing "experiential knowledge" (Solórzano & Yosso,
2002, p. 26). I now turn to observational field notes and some of Susan's insights to
briefly describe how she participated and engaged in the various school contexts in which
I observed her. In this section, I particularly illuminate how Susan participated in school
with flexibility and an adept ability to navigate social situations.
Susan's Participation: "I Refuse to Be Anything Other Than Myself
While Susan's participation in school seemed to oscillate given differing class
expectations, there is a dictum that she lived by which is discernable in the assertion
headlining this section: "I refuse to be anything other than myself in any of my classes
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(except, of course, when I'm playing a character in a scene). . .If a teacher says 'express
your opinion,' I'm gonna express my opinion." Indeed, I did witness Susan sharing her
opinions; typically, she would do so when directly called upon, however, as the following
descriptions reveal, she sometimes volunteered her thoughts during the course of classwide discussions.
Academic Classes
Susan's participation in academic classes was marked by certain qualities of habit
that appeared to transfer seamlessly from class to class. In most situations her
participation blurred the passive/active line, as she responded to expectations that
changed minute-to-minute. In every academic class, Susan sat at the front of the room,
where she took notes copiously and continuously, arrived prepared with relevant
materials, all organized neatly on her desktop or workspace. Commenting on her practice
of sitting in the front row, Susan reasoned, ". . .it's easier for me to see the chalkboard. . .1
mean, I don't technically 'need' to sit at the front, it's just better for me."
On most days that I observed, Susan arrived early and appeared to be engaged
with quiet focus and intent, often twirling her hair as she worked. She worked with
seeming flexibility to the shifting participatory structures that characterized given classes,
with an apparent sense of comfort during times when note-taking on teachers' lectures
was expected. In addition, she discussed ideas with peers during pair and small-group
talk and responded to teachers when she was directly called upon. I observed the latter
form of participation most often in her Government class, where she had a teacher who
concertedly worked to understand the perspectives of all of her students, including those
who were the quietest.
Beyond waiting to be called upon to share her ideas, Susan volunteered responses
and contributed to class discussions when she appeared especially interested in an idea or
topic. An example comes from her Journalism class when, during a discussion about the
campaign for United States presidency that was taking place, and particularly about the
candidates for the Democratic party, she extended a comment made by one of her
classmates, remarking: "Adding onto what Justine said, about how some people vote for
people based on one quality- a lot of people aren't voting for Hillary [Clinton] because
she stayed with Bill so they assume she is not a strong person because she didn't file for
divorce." Susan's comment and the class discussion spurred from a participation
structure that first enabled partnered talk before expanding to a whole-class discussion.
While allowing for a "warm-up" period wherein students could test their ideas before
sharing them with the class, this type of participation structure seemed to enable Susan's
active engagement as a discussant in class-wide dialogue, notably more so than other
structures that I observed.
Drama Classes
The quality of Susan's engagement in her drama classes was more lighthearted in
contrast to her engagement in her academic-based classes. I often observed her smiling,
laughing, and freely talking with her peers. Susan's and her peers' propensity to confer
with one another on an ongoing basis was an expected facet of their participatory
experience, as her drama courses were much more collaboratively structured than her
academics. Most of these classes centered on rehearsing scenes and debriefing upon or
critiquing students' performance work. During class-based rehearsals, Susan engaged
earnestly, an observation made based on her apparent preparedness for her scenes (I
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never witnessed her needing help with her lines, which suggests her capacity to memorize
her lines with agility, a quality she claimed to be one of her strengths) and by the way her
countenance changed from carefree to contemplative when it was time to begin her
scenes.
Changing schedules at the last minute and spontaneous shifting of plans were
common features of drama classes. There were also times during drama classes that
scheduling was so disorganized that Susan and her peers ended up sitting and waiting for
directions regarding what room they needed to go to, what scenes were to be rehearsed,
and so on, for nearly half of the class period. During these "down" times, Susan often
took the opportunity to relax, until it became clear where she was expected to be and
what she was expected to be doing.
At other times, teachers led discussions on topics related to theater performance,
such as auditioning. In such instances, Susan was generally quiet unless her dialogic
participation was requested or required (such as in a round robin sort of structure, where
each student took a turn at presenting her/his ideas). One example of this type of
structure comes from an observational field note from a drama class, where I noted:
Sitting in a circle, the class is engaged in a discussionfacilitated by a teacher
about auditions. In response to her teacher 's request to hearfrom each student
on what they need to do to prepare themselvesfor performance auditions, Susan
says, "The veryfirst thing I have to do is shake out my hands " and she
demonstrates how this is done, shaking her hands vigorously in the air, at the
wristjoints, and several students try it out. She adds, "Itjust makes me less
anxious. "
During discussions such as this one that were led by teachers, Susan consistently
appeared to be listening intently, and as illustrated here, added thoughtful and relevant
comments to the flow of discussion. Susan's ability to maintain the flow of discussion by
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sharing her strategy for easing the anxiety that she encountered before an audition
counters the conception that individuals with AS struggle with contribute responses that
are relevant (see Bock, 2007) to the discussion at hand.
Beyond Classroom Walls
Observing Susan in contexts in between classes and during activities outside the
realm of typical class structures enabled a more holistic picture of how she participated in
school. Here, I share notes from lunch hour and her final performances to illuminate
diverse facets of her participatory style.
Lunch hour. Approximately two-thirds of the way through the school year, Susan
was notified of her acceptance to the university that she was most interested in attending.
Shortly thereafter, I observed Susan sharing her lunch hour with several of her friends,
and as I sat with them in the Senior Student Center, I recorded the following notes:
/ walked with Susan to class this morning, and along the way we talked (she
mentioned she is notfeeling so well, but is ok); she stopped a couple oftimes to
say hello to friends, as I've seen her do many times. She exchangedfriendly hugs
and a few words with one girl and chatted with another. As we approached the
classroom, she informed me that she had a substitute teacher right now, though
she was not sure why Mrs. Abbott is out.
When I reminded her I'd be observing her lunch period, she in turn
reminded me where she eats lunch (Senior Student Center). I then congratulated
Susan on her acceptance to State University, to which she smiled and said that
it's her first choice of schools. I asked her ifshe is going to accept the offer and
she said yes, and that her audition (for the theater program) is coming up.
At lunch hour, Susan sits with 3 other girls on a sofa in the Senior Student
Center. In all, there are about 25 students in the room, about half male, half
female. There are a few big tables and a couple of sofas where students sit,
lounge about, talk, laugh, and eat. One ofthe biggest walls is covered with a huge
graffiti mural that says, " SENIOR STUDENT CENTER, " which adds a sense of
vibrancy to the space.
Susan converses with a young woman sitting next to her, and they talk
about classes, teachers, and the fact that the young woman does not have a lunch.
Susan offers her halfofher own sandwich.
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Conversation flows into the topic ofturning 18, to which Susan says: "I'll
be doing things I never imagined I'd do. " They talk about getting to register to
vote and voting in the primaries. Susan brings up that she was talking yesterday
about the difference between cost (how much you payfor something) and (value)
how much you think its worth.
Havingfinished her lunch, Susan sort ofstarts "dancing" in her seat,
moving her arms a bit, singing subtly under her breath, smiling, and then gets
back to chatting with thefriend next to her. She is in a remarkably good mood.
Herfriend asks her what it is about State University she likes over the other
places she applied to. Susan says that she thinks she won 't get lost as much as she
might at other places (she says she gets lost a lot). Also, freshman there have
more opportunities to get into things (referring to theater performances/shows);
she also says it 's a prettier campus than other schools she has applied to.
Susan's lunchtime engagement flowed from conversing with her friend on several
topics: sharing her lunch, turning 18, and the difference between cost and value; then, she
began to dance in her seat, and finally went back to conversing with her friend about
features of State University that she liked. In doing so, she appeared to have switched
gears from one topic and activity to the next with agility and ease. Her body posture also
seemed much "looser" in this context than in either her academic or drama classes; along
with laughing, smiling, and joking around with her friend, I had never witnessed her to
spontaneously "dance and sing" in her seat in any other context.
Her ability to reflexively move from one conversation to the next, as well as her
interest in talking about a range of subjects during the course of approximately an hour
suggest that Susan adeptly "read" her social environment, which contrasts a common
belief that students with AS have difficulty "shifting attention" (Rogers & Myles, 2001,
p. 310). Beyond merely reading and responding to the expectations for the social
environment however, Susan also reciprocated in directing the course of action and
conversation therein, as suggested, for instance, by her introduction of the topic of cost
and value (though the topic was quickly terminated). An inability to reciprocate socially
is a quality often associated with AS (Bellon-Harn & Harn, 2006; Rogers & Myles,
2001); however, Susan's conversational agility and apparent eagerness to share a lunch
with her friend offer a disruption to this common conception.
Next, I share notes from Susan's Final performances, which took place at the end
of the fall term. This second look at a school context beyond classroom walls offers an
additional vantage point from which to understand the diverse facets of Susan's
participatory engagement.
Final performances. Susan's participation in the Final performances of her drama
class, which took place at the end of the first school term before the holiday break,
reflected the culmination of many hours of rehearsal. As she collaborated on stage with
her classmates in dramatic scenes, I watched the performances and directly after, wrote
the following notes:
The Final performances were open to outsiders—students 'family andfriends—
and tookplace in the "Junior Theater" where there are parents and others who
have gathered to see the senior drama students ' "exam " skits. They are called
"Final Term Scenes " and there are about 7 ofthem total, with a 3 minute break
in between (about halfway). In thefirst skit, Susan plays sort ofa ghost ofa
woman who was raped in her own home in the night. It is a very intense scene
and as such, manyfolks in the audience had tears in their eyes watching it.
Susan 's character was wrapped up under a sheetfor the whole scene and she was
on a cot that looked cold and sterile, like a hospital bed.
The energy in the theater, which was approximately halfwayfull, was
enthusiastic and celebratory. There was a lot ofcheering, clapping, and laughter
throughout the performances. The students were beaming and seemed really
proud after the show was over. And they gave major props to their teacher,
Doctor Schneider, as well. They clearly appreciate him, and he clearly seems to
love what he does. ..I noticed that when Susan entered the stagefor thefinal bow,
joining her classmates, the crowd seemed to cheer louder that they hadyet. She
smiled a lot and appeared to be really happy, and what looked to me to be "in her
element. "
Susan articulated during interviews that the Final performances were a big deal
not only in terms of students' final grades, but also as a representation of their cumulative
efforts in class up until that point. Bringing to the fore newly learned ideas and
techniques, Susan took the preparation for her scenes very seriously, as suggested by the
quite apparent concentrated, serious, and articulate manner in which she engaged in inclass rehearsals. She also described her disciplined approach to memorizing her lines,
which will be discussed later in this chapter, a factor that likely played a role in what
appeared to be a solid final performance and one which seemed to incite a particularly
lively applause from the audience.
I move now to presenting and analyzing Susan's representations and stories about
life in school. To do so, I draw on interviews, observations, and educational artifacts to
illuminate how Susan demonstrated competency and strength in an array of areas and
ways.
Susan's Stories and Representations of Life in School
In her discussions and representations regarding a variety of school-based issues,
Susan recursively revealed how the following primary elements, conceptualized here as
themes, were concomitant with meaningful participation: a) comfort; b) personhood; c)
creativity and relevancy; and d) opportunities and goals. In the following sections, I
present and analyze data pertinent to each of these themes, illuminating how many of
Susan's insights constitute various counter-stories to dominant AS narratives, including
those around ToM, humor appreciation, emotional expressivity, and socialization and
relationships.
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Comfort: ". . .If You Just Stick to Where You're Comfortable You're Not Really Going to
Grow As An Actor or As A Person"
Susan expressed diverse sentiments in regards to the element of comfort in her
life as a student. While she shared how feeling comfortable in diverse contexts was an
important feature to her participation in school, she also articulated a need to unsettle the
comfort zone of ordinary routine in order "to grow as an actor or as a person." Her ideas
on comfort thus underscore her ability to think and act flexibly, qualities not typically
associated with students labeled with AS (see Bledsoe et al., 2003). Susan's stories
around the element of comfort also interrupt common narratives that position individuals
labeled with AS as lacking the ability to socialize or the interest in maintaining
relationships with others.
Susan often associated descriptors such as "casual" and "nice" and terms such as
"ease" and "care" with structures that fostered a sense of comfort. For instance, in
discussing a participation structure that first fostered pair and small group discussions
before moving into a whole-class discussion, Susan noted:
I like it, because it seems very casual. It's not just a teacher giving information to a
bunch of students, it's about students talking to each other and it's got a nice feeling to
it. And I also like talking in small groups in the beginning. Sometimes when it goes
straight to discussion, a lot of people know what they want to say but it takes awhile to
raise their hand and actually say it, because people are shy or they are worried that
people are going to disagree with them and not speak to them the rest of the semester.
So when we talk in small groups it warms you up for the bigger discussion.
Speaking about a particular drama teacher's style of teaching, Susan again discussed
features that contributed to a sense of comfort:
Doc[tor] [Schneider] has a very casual style of teaching. A lot of teachers talk to their
students in a way that makes it clear that they have a higher authority, but Doc just
seems to start conversations with us. We're generally talking about our scenes, but it
seems like a conversation that students would have with each other.
Susan's identification of a particular feature, the ability to see her peers face to face, was
explicit in her description of why discussion circles promoted comfort:
. . .1 like sitting in a circle for discussions. This way, I'm able to see everyone that I'm
having the discussion with, and when I'm the person talking, it's easier for me to talk
to everyone. It also seems more casual, so I feel like I'm in a more comfortable setting.
While it seems clear that Susan finds comfort in structures that are devoid of formality,
she also identified how being comfortable is not always a goal. In the following excerpt,
she discusses how she benefited and learned from a teacher who held her to high
expectations in terms of encouraging her to engage with struggle:
. . .my main Acting teacher for sophomore year [is] one of those teachers that can
make fun of you, but you know he's kidding, and then you can make fun of him back,
and he knows you're kidding. . .we can all take it because we all know that we're
kidding. . .Um, and he also makes really good suggestions. Like, if you're struggling
with something, he'll accept the fact that you're struggling with it, but he'll keep you
going through it so that you don't have to struggle with it anymore. And, when we're
on the spot, we kind of don't really like that, but in the end, I don't know about
anyone else but, I know that it's a good thing that he pushed us. Um, because if you
just stick to where you're comfortable you're not really going to grow as an actor or as
a person. So, that's really important.
Discomfort, in the form of struggle, Susan noted, can foster growth by virtue of treading
on unfamiliar territory. While she embraced the exploration of unfamiliar territory as an
essential ingredient for growth, Susan also articulated how comfort does not always
manifest in the forms of routine and predictability. In the following excerpts, Susan
contrasts features of her academic and drama classes, articulating a vision of utmost
comfort to be a classroom atmosphere where socialization, communication, and variety
are prominent features:
Although I feel comfortable in all my classes, I feel most comfortable in my drama
classes. This is partly because of the fact that I've known the drama students and
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teachers the longest, and partly because those classes are the reason why I wanted to
go to my school so badly. I get to do what I love to do with people I know. . .
It's easier for me to socialize in my drama classes. Obviously we do work, but we
don't sit at desks and answer questions for 40 minutes. We run lines, or figure out the
blocking of a scene, or other things that involve communication. Plus we have a lot of
time to chat with each other before Dr. Schneider officially starts class. These are also
the people I've known for four years, so even if I'm not close with every single senior
drama major, I feel very comfortable talking to all of them. In my academic classes,
however, I really only have a chance to talk to people before and after class. . .these
students are the people I've known for four years. I've gotten to a point where I can
trust all of them, and because ofthat, I can share my opinions with all of them. This
led me to be able to share my opinions with even more people. IfI can fully express
myself on stage, there's no reason why I can't do so offstage.
...academic classes are... generally just more structured, like there are a bunch of
desks, and they are in rows, and we sit in the same place every day, and we get out our
notebooks, and the whole routine; whereas in Drama we go in, we get to say "hi" to
the people we hang out with, we have time to talk before our Drama teacher comes in
and says, "Ok, we're working now." And when we have to sit down to do something,
it's in a circle usually, um, but we're not, nothing's assigned, so we don't sit next to
the same people every day. So, I guess there's more variety.
Here, Susan juxtaposes the "variety" inherent to her drama classes to the "more
structured" and "routine" nature of her academic classes. In doing so, she identifies how
the spontaneity of her drama courses engenders an inclination to engage socially with
others, and notes how the participation structures inherent to these classes enables her to
connect with others in ways she is not always able to do within the structure of her
academic classes. While structures such as sitting in circles to engage in group
discussions seem to lessen the formality of the class atmosphere, Susan's thoughts on
such structures contrast narratives about students labeled with AS needing predictable
structure and exhibiting "rigidity in rituals and routines" (Elder et al., 2006, p. 637) in
order to feel comfortable in their daily lives. Susan, on the other hand, embraces the
often less predictable nature of her drama classes, and intimated that the work that she
accomplished in these classes fortified her abilities in other areas as well, as suggested in
her comment that if she can express herself onstage, she can do so off of stage too.
Susan's expression of the closeness and affinity she felt for her fellow drama-
major peers provides another counter story to common narratives about students with AS,
namely that they are often isolated by virtue of their assumed social skills deficits.
Having a "chance to talk to people" is a prominent feature in Susan's rationale for
identifying her drama classes as those which promote the most comfort; placing a
premium on access to communicating with her network of trusted peers, Susan
illuminated that she values opportunities to socialize, despite what her disability label
says about her.
Layered upon Susan's conceptualization of "comfort" and the role it plays in her
growth in a variety of contexts, she noted that "I think a lot of why [school is] a
comfortable environment is because I've gotten to know my teachers as people, not just
as teachers." Thus, I turn now to an analysis of the element of personhood, which played
a defining role in many of Susan's stories and representations.
Personhood: "I Like Teachers That Can Be People at the Same Time"
In particular regard to qualities of teachers that make a difference in Susan's life
as a student, she recursively asserted that it was important for her to gain a sense of the
person behind a "teacher" façade. In sharing ideas around issues of personhood, Susan
revealed how qualities such as emotional vulnerability, emotional expression, a sense of
humor, and shared interests fostered her ability to understand and relate to her teachers.
Her stories and representations around the element of personhood juxtapose dominant
narratives around AS, particularly the beliefs that individuals so labeled lack the abilities
to a) initiate, maintain, and value relationships with others, and b) take the perspective of
others (have a ToM).
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In the following excerpts, Susan identifies distinct qualities of three academic
teachers (Journalism, Government, and Math) that enabled her understanding of who
these teachers were as "people."
Journalism.
. . .my Journalism teacher keeps talking about how she was, she didn't get out of
college too long ago, and she remembers the process really well; that's why she really
wants to help us with our college process.
Government.
Susan: Um, my Government teacher. . .obviously cares a lot about what she is
teaching, so she's not just, spewing information to us, she talks about it and then she
goes on about her opinions and she makes it very clear that if we disagree with her,
that's ok, and to speak up. . .my Government teacher is always sharing personal stories
with us and then we get into this whole discussion where like everyone is sharing
personal stories; urn, so we were learning once about John F. Kennedy's assassination
and how Jackie was in a state of shock for a really long time and then she went on this
tangent about how most people are in a state of shock when they lose someone; and
then a bunch of people started talking about when they lost people, how they were in a
state of shock. . .1 got to talk about my grandpa. . . We all get to know each other on a
personal level in that class.
...I think she's my favorite [academic teacher] this semester... because she's a lot
like that one drama teacher I was telling you about in the sense that she cares about all
of her students and she wants us all to do well. Um, and she cares about what she's
teaching.
Carrie: She tells you about those things? Or these are just things that are implied, that
you pick up . . .by her actions?
Susan: Sort of both. She's said it to us, she tells us she loves us a lot. Um, although
some people just give you the information, she does it in a way that makes you want
to listen to her. And she brings a sense of humor into it. She has us all watch
Hardball a few times a week, urn, she, she loves Chris Matthews, so she talks about
him a lot, and how she loves him, and it's real, it's kind of funny. ..she also, she
has kids and she talks about them, and urn, if we're talking about a political issue that
upsets her, she'll make it very clear that it upsets her, and she's also perfectly fine
with people that disagree with her. I've had, I've had one teacher, an English teacher,
which kind of makes it ironic, but I had one teacher who was like, pretty much, "agree
with me or be wrong.". . .But. . .my Government teacher actually loves it when people
disagree with her because it means they're ok with speaking their minds about things.
Carrie: Yeah.
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Susan: She said, she said many times, she's a Democrat, but if you're a Republican,
speak up, and disagree with me, and more power to you. . .1 can't exactly do that
because I'm a Democrat. But if I did disagree with her on any issue, I think I'd be able
to say so...
Math.
Susan: Um, my Math teacher has a sense of humor. She said once that the people who
make the Regents get into a big room, smoke a lot of crack, and write the questions
(laughs). And I'm not entirely sure that's true, but that's what she says. And urn, if
nobody volunteers to put a problem up, she tells us to stop doing crack. I don't know
why she keeps bringing crack into her jokes. Maybe she quit it recently. I kind of
doubt it; I think she's clean. . .But urn, she's a good teacher and she, I've had a few of
these, she's one of those teachers that can make fun of you and you know she's
kidding, and she knows that you know she's kidding.
Carrie: Yeah. So there's an element of trust there that you can joke with one another?
Susan: Right. I don't really know if she can take it because none of us have tried to get
her back, but she probably could. . .My Math teacher, she doesn't do that so much, but
like occasionally she talks like a little bit socially, like the first night after parentteacher conferences, she complained to us a little about how late she stayed. So she
can talk to us. She talks about other students that she had—but really it's her sense of
humor for me. She has a big sense of humor, and that helps me. I like teachers that can
be people at the same time. . .And I think she's a great teacher. . .it's clear that she
wants us to know the material. A lot of teachers are like, "here is the material, if you
don't know it, learn it; if you know it, good for you." Um, but she makes like double
and triple sure that we know and understand it, and that's always really important to
me and. . . she kind of brings her personality into it. . . .
Susan also talked about a drama teacher who "clearly loved" her students, iterating how
the connection she forged with this particular teacher was borne of a shared emotional
response to students' work:
. . . we had a Vocal Technique class. Junior year I had her [Vocal Technique teacher]
for audition technique and musical theater. Um, what I liked about her so much was
that she clearly loved everybody that she taught. If she had to lower a person's grade,
she'd do it because she had to, but it was clear that she really, really didn't want to,
and she wanted to give everyone hundreds and nineties and things. . .And she even said
that. She said, "I want to give you all hundreds. So please come prepared.". . .And also,
she gets really emotional. So, in musical theater, urn, some people were given sad
songs to work on, and then they performed them, and she cried with like a few other
students. I was one of those few, pretty much, basically she'd have to use a bunch of
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tissues and whatever she didn't use, she'd have to pass over to me. . . we were the
people who always cried at things.
In another interview, Susan talked about a shared interest in a music group that she had
with a teacher; their common interest formed the foundation for an enduring dialogue
they returned to throughout the school year.
Susan: Um, another one I had, urn, he teaches a bunch of different things. Like, we
had him for Movement, and Improvisation], and different Vocal Technique classes.
This year I have him for Audition Technique. . .he's big on like, diction. . .and voice
control, and like your pitch and everything. . .And that's really, really helpful. . .and he
also knows how to, he can give criticism and it can sound good. Like it will sound
really helpful as opposed to, "this is what you did wrong". . .It's "This is good, this
needs work, overall you did well," etcetera. . .Um, actually. . .we sort of have a
connection, because we're both really huge fans of the same music group. I'm a
bigger fan, but he's a fan too.
Carrie: What is it?
Susan: Toxic Audio... they're a capella...and they, they do a show, and are kind of
around the world right now. Um, and they cover a bunch of songs that are popular, or
were popular years ago. . .And, they use their voices for everything, so you think
you're hearing a full orchestra, and. . . it's all coming from them.
Upon realizing that this particular teacher shared her interest in Toxic Audio, Susan
began to:
. . .inform him whenever I'm going to go see them [Toxic Audio], and I always keep
him updated on the countdown, as in, like 10 days. . .or however many days it is. . .So
yeah, we've gotten to a point where I can just walk up to him and say "fifteen," and
he'll know that means that I'm seeing them in fifteen days. (Laughs).
Susan's thoughts on qualities that foster a sense of "personhood" in her teachers
provide opportunities to understand how she values and experiences human relatedness.
Thus, while students with AS are commonly thought to lack a ToM, and particularly
abilities in areas of "emotional relatedness" (Elder, et al, 2006, p. 637), Susan's thoughts
on qualities of her teachers' personhood disrupt these notions on several accounts. For
one, she described how pedagogical habits such as expressing a sense of openness to
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students' constructive dissent, sharing personal stories and going off on a "tangent" in
light of larger discussions around politics and historical events, her Government teacher
fostered an atmosphere where students "get to know each other on a personal level."
Specifically, through sharing personal stories of her own, the Government teacher
seemed to provide a precedent that many students followed, a process that enriched
students' understanding of one another. Susan's act of sharing about the loss of her
grandfather during a class discussion of the assassination of John F. Kennedy was a
contribution to the class' ability to know her on a personal level. This act suggests that
through the telling of a personal story, Susan was invested in reaching out to her
classmates, thus contributing to and perhaps strengthening a sense of class-wide
community and even trust.
Susan's discussion of the death of her grandfather in light of the death of John F.
Kennedy also suggests that features of her Government class abetted her ability to forge
connections between disparate events—one abstract, one experienced— a process that
allowed her to bring relevance to what otherwise might be a meaningless historical fact.
Her ability to forge connections in this particular class suggests that her Government
teacher, who, as Susan noted, "makes it very clear that if we disagree with her, that's ok,
and to speak up," took strides to ensure that students were able to express themselves
openly. While Susan's story does not represent an instance of dissent, she nonetheless
took an opportunity to "speak up," a decision that appeared to strengthen her connection
to her class community.
In another instance, Susan identified her Journalism teacher's recent graduation
from college as a quality that enabled her, as a student, to understand this teacher as a
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person she could relate to. This teacher's ability to speak to students in terms of what
they shared in common appears to have contributed to Susan's insight that "she really
wants to help us with our college process." Susan also spoke about her Math teacher as a
person who, through her sense of humor, "kind of brings her personality into it [her
teaching]." This particular teacher showed her personhood in other ways too—as Susan
noted, she also seems to have been able to level with her students, such as when she
"complained" to the class about having to stay late after conferences. However, although
Susan observed that "she can talk to us," she asserts that in terms of qualities that allow
her and perhaps other students to know her as a person, "it's her sense of humor for me.
She has a big sense of humor, and that helps me."
Susan provided yet another instance of disrupting common notions that link
individuals with AS to a lack of human relatedness in her discussion about her Vocal
Technique teacher who "gets really emotional," such as when she cried during students'
performances. Susan connected with her in this emotional response, since she cried too,
and the two shared tissues. Like her sentiment about her Government teacher who
"obviously cares a lot about what she is teaching," Susan noted that her Vocal Technique
teacher "clearly loved everybody that she taught." She illustrated this observation adding
that this teacher "wanted to give everyone hundreds and nineties and things." Her
particular ability to observe and identify the state of others' minds thus contrasts the
common narrative of individuals labeled with AS lacking a ToM, the ability to take the
perspective of others. Susan's stories, on the contrary, suggest that she has a keen sense
of the emotional vulnerabilities and propensities of several of her teachers.
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Finally, Susan's description of her Audition Technique teacher highlights how a
shared interest in the a capella group Toxic Audio allowed her to understand him as a
person with interests that extended beyond his teacher persona. Her discovery of their
shared interest seems to have enabled her initiation and maintenance of a dialogue around
Toxic Audio that carried on through the school year. In this particular story, Susan
reveals how one area of interest, Toxic Audio, catalyzed a) an understanding of an
element of personhood behind a "teacher" persona, and b) a relationship with a teacher
that she apparently valued, as evident in her commitment to keeping "him updated on the
countdown."
As these stories suggest, Susan illuminated how she initiated, maintained, and
enjoyed relationships with others, while sharing some of the ways that she came to know
her teachers as people. In doing so, Susan exposed an interest in knowing who her
teachers were as dynamic human beings, and often extrapolated, based on their actions
and emotional expressions, what they were thinking and feeling. These characteristics
require a ToM, as well as an ability to relate to others on a personal level. While Susan's
insights in this section complicate common understandings of AS in regards to ToM and
emotional relatedness, those presented in the next section illuminate the prominent roles
of humor and creative expression in Susan's life as a student.
Creativity and Relevancy: "I Like the Creativity. . .1 Like That I Could Take Something
That I Was Learning and Compare It to Modern Things That Are A Part of My Life"
When speaking about features that fostered her meaningful participation in school
activities and projects, Susan frequently cited having the liberty to engage with creativity
and relevance. Here I present data on diverse activities and projects that Susan identified
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as particularly creative and/or relevant to her life. Additionally, I specifically discuss
how the use of humor often seems to have catalyzed the evidently imaginative manner in
which she engaged in these school projects and activities.
Politics. Susan expressed an interest in engaging school-based learning that
somehow could be connected to her life, to current events, and to modern culture. An
example comes from a discussion about her Government class, wherein Susan
underscored the relevance of political discussions in light of the reality that she and her
classmates would be turning eighteen, a rite of passage that signaled their first
opportunity to vote.
. . .we're seniors and a lot of us are going to be turning eighteen soon, or have already
turned 18. So this is going to be the first election that we will vote in. . .And because
this is the year we are going to vote. . .I'm not going to speak for the people I don't
know, but personally and this is partly because of my Government class and partly
because I think I should know what Fm voting for and what I'm voting against, a lot
of seniors are paying more attention to politics, and who the candidates are, and what
they stand for, and what they agree with and what we don't agree with, because we are
going to vote and we want to know who we are voting for.
Further, she discussed different features that enabled or curtailed her interest in learning
about politics:
Susan:...politics, used to really, really bore me and. ..I didn't care about most of the
stuff. . .since I've taken her [Government teacher] class, I know more about what's
going on politically and I'm still, I had to watch the debates, and watching that, I
found that boring. Because I feel like a lot of people that urn discuss politics don't
really do it in an interesting way. Pretty much, up until my Government class,
everything I knew about politics I learned from Jon Stewart and Stephen Colbert.
'Cause they made me want to listen, they just made fun of everybody... like, they give
you the news, but at the same time, it's a comedy show.
Carrie: Right, right...
Susan: So, that's... that' s what helps me learn: if people make something interesting,
Fm gonna remember it. . .And, so my teacher's able to, not only does she care, she
made me care more about politics. . .But I don't, I don't really like watching like the
news shows and everything but I do know more about what's going on.
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Thus, while Susan used to depend on the quality of entertainment inherent to comedy
news shows to engage her interest in politics, during her senior year it seems that the dual
roles of having a teacher who "cares" and the relevant nature of the topic ignited a
newfound appreciation for politics. Clearly, Susan regards each of these features (humor,
care, and relevancy) to be "interesting," therefore enhancing her ability to "learn."
Book sequence. During interviews, Susan spoke about a two-part project that
spanned the course of three years; she completed the first part of the project during
freshman year Biology class, then during junior year, she had the same teacher again for
Forensics, wherein she completed the second part. She found this project especially
engaging and liked that she could continue a piece of work two years after she completed
the first phase.
. . .Um, like if Fm given a project to do for a class, I'll make the project as creative as
possible. . .Biology was freshman year and Forensics was last year, but I have the same
teacher. Um, and we had to do in Biology we had to do a project on how proteins
were made, and I chose to make it like a kids' book, and I connected the proteins to
things in my life that I enjoy. And that's how I remembered it. I did well on the
Regents and everything and that's how I remembered. For Forensics, we had to do
another project and based on the first letter of your last name, you had to do certain
things—and so I made another kids' book and I sort of made it like the sequel to the
protein book—I had a little introduction and everything, and it was like, "You were
just waiting for her to write another book, weren't you?" (laughs) and some other
things; and it helped me remember that.
During her final interview, Susan contributed the second half of the project to the study,
noting that while she wished she could have contributed both pieces, she could not locate
the original piece.
Susan: . . .1 brought the sequel [to the kids book about proteins that I did for Biology]
that I did for Forensics, which is the same idea, but it's two years later, and it's the
same teacher. . .freshman year I wrote [about] proteins and then in Forensics I got the
same teacher and had to do a project, so I made the sequel.
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Carrie: So you didn't have the teacher sophomore year but you had her again. . .
Susan: Yeah, she teaches Biology and Forensics, and you don't take either of those
sophomore year... This is Forensics, the thing that this is about is completely different,
but it's the same format as the proteins project and she'd understand it.
Carrie: ...so what is the topic here?
Susan: It's chromatography. . .High Performance Liquid Chromatography. . . And then
it explains what that means.
Her motivation to share the piece hearkens back to her initial excitement at the reaction
she received upon completing the book on proteins, and she explained, "I remember
freshman year, my protein book was a big hit, and I thought, ? should make a sequel' so
I did. . .1 wish I could have found the original, then I would have brought both. . .1 got a
hundred on the first one, so it was a little bit better." As is evident in looking at the pages
of the book, Susan can be understood as a creative person who enjoyed not only the
process of turning a newly-encountered concept (High Performance Liquid
Chromatography, or HPLC) into something fun and entertaining, but also as an
imaginative person with a talent for illustrating. Her illustrations throughout the text
relate the topic of chromatography to a real-life phenomenon: her crush on a music
celebrity, Paul. There are captions that accompany her illustrations alongside the text,
and together, the piece is visually vibrant, captivating, and funny.
159
Figure 1: Susan's Forensics Project on HPLC
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U.S. History project. While explaining a piece of work from her U.S. History
class, Susan described how she integrated humor, and she wanted to make it clear that the
sixth point of discussion (a voluntary addition to the requisite five) was meant to be
simply "a joke."
166
. . .we were studying the Great Depression and we had to compare it to either movies
or plays. And we had to explain why people that lived through the Great Depression
could relate to the movies or plays. So these are the main five that I chose, and then
this one (pointing to number six, where the movie Norbit is presented) was a joke, but
then I explain the joke.
. . .1 didn't want them [teachers, classmates] to think I was serious about that one
(referring to the Norbit example). . .1 wasted like two hours of my life seeing that
movie. . .we needed to do at least five, so I got five real ones, and I added this in, I
couldn't resist, I had to bring in my humor. Um, and we had to get pictures from the
movies, like either posters or a still shot from the actual movie. . .1 don't remember the
exact feedback [that I got] but I remember I got a hundred.
She explained another choice that she made during this project, which was to connect a
movie that she really liked (Mean Girls) to the Great Depression, and specifically the
Stock Market crash.
Susan: ...And so I thought of movies and musicals that I had seen, and connected
them to the Great Depression. . .one of the movies happened to be Mean Girls and it
wound up being a really great comparison. . .So I was able to connect it because the
Great Depression started when the Stock Market crashed, and it crashed because
everyone trusted the Stock Market really, really easily, and then all of a sudden it let
them down, and then they were depressed for a really long time. Um, and in this
movie, the main character makes a friend, but she trusts them really, really easily and
they turn out to be these really horrible people that you want to avoid in school. And
then everybody is mad at her and her life crashes, like the stock market.
Carrie: I see the parallel there. . .
Susan: Right. It's, it's easy after you think about it, but it's not the first thing you think
about. . .that was the coolest one in my opinion just because of the obscurity.
Carrie: What kind of response did you get?
Susan: I got a hundred on the project. . .1 like the creativity, urn, I like that I could take
something that I was learning and compare it to modern things that are a part of my
life—that's what really helps me remember things.
Figure 2: Susan's U.S. History Project
1) Pan's Labyrinth—.During the Great Depression, inaay people were
forced to move away from their homes, due to
extremely poor circumstances. Different families
sometimes had to move in togedser, This movie
takes place shortly after the Spanish GMl War.
Since die living situation is clearly awful, a girl and
her pregnant mom need to move in with someone
they think will take care of them.
2) Sweeney Twkl—Since so many people were overwhelmed by debt.
many jobs and possessions were lost. The suicide rate
increased greatly as well, so lives were also lost, in
this musical, Sweeney Todd loses his rainilv and the
person he worked with (although he wanted to lose
her), and it seems as though he doesn't want to live
by the end of the show. He winds up losing his life
when
die character Tobias (a.k.a. Toby) appears and
ends it.
3) A LiUh Princess—Once again, so many Americans lost everything they
had. Even when they were going through this hard "
time, some were able to remain optimistic, in this
movie, when Sara Crewe thinks she lost her familv
and everything she owned, she is able to keep her
confidence, and a part of her always knows that
things fire going to work out.
4) Mean (Uris—American consumers easily trusted die stock market and
invested lots of money. When the market crashed, and all
diejnoney was lost, the country became miserable and
difficult to live in. When Cady easily trusts a group of
girls in this movie, she doesn't realize how awful thev
really are. and how awful she's becoming. Eventually.
this causes her to be strongly disliked by even-one at her
school, and her life is pretty sad for a while. Of coarse
fids situation isn't as severe, but it shows what
overconfldence in people or things can lead to.
5) Rent—After the stock market crash Ik 1929, consumers were in loads
and loads of debt. They didn't have die money to pav it back,
because circumstances were so difficult. In tfris musical, Bennv
tarasses Mark and Roger to pay back monev that they owe him
which Mark and Roger claim thev don't. Even if thev did owe
the money, they wouldn't be able to pay Benny back, because
they are completely broke.
6) Norbit—Anybody who lived through die Great Depression would most
likely tell you that it sucked. Anybody who saw this movie
would also most likely tell you that it sucked.
168
Note; #6 is just a joke. However, it's also completely true.
Here again, it appears that Susan's creativity was spurred by her ability to bridge
potentially abstract concepts and ideas with relevant, contemporary interpretations.
Temple Grandin journal. In an effort to "show people how my work changed,"
Susan contributed a piece of work she had completed in fifth grade. The assignment had
been to write journal entries from the perspective of a person of interest and Susan
decided to write as if she were Temple Grandin. With help from her mother, she
researched Grandin's life for the project, and shared why she chose to focus the
assignment on her.
I chose Temple Grandin. I chose her because this is in fifth grade, when my mom had
just told me for the first time that I was autistic, I didn't know until then. So I got
really into it, and I wanted to know more about it, like other people that had it, so I did
my project on her. . .1 was ten so I don't remember a lot of the specifics but I
remember the reason I chose her was because she dealt with autism and she's, she
came a really, really long way, and she's able to give speeches and she's able to be
really successful and that was something I wanted to be able to do.
169
Figure 3: Pages from Susan's Temple Grandin Diary
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Dear Diary,
I am Temple Grandin. I am in my 50's now, and I
am autistic. In other words, I have autism. What is
autism, you may ask? Well, autism is a
developmental disorder. The autistic child often
withdraws from his or her environment and the
people in it to block out an onslaught of incoming
stimulation. The autistic child does not explore what
is around him or her, but stays in his or her own inner
world. My parents were told that I should be put in an
institution. Simple, little movements, like waving my
hand caused perseveration (That is behavior when a
person like me is unable to stop an activity once they
have started, even ifthey want to). I did not learn to
speak until I was 3 1A, and even then, I didn't use
words to communicate. Other symptoms of autism
include not liking to be touched, doing things over
and over again, temper tantrums, wanting to be alone,
and super-sensitive to loud or unusual noises. Some
people thought, "Once autistic, always autistic."
These are my memories. I will tell you one soon.
Love, Temple
ÏJsgr Diary,
In middle school, a girl named Mary Lurie passed
me in the hall while going to music class. She lifted
her nose in the air and said, "Retard. You're nothing
but a retard!" I was so mad, I took my history book,
and threw my arm back, then forward. My arm let go
of the book. It hit Mary. She screamed, and I walked
away, not even bothering to pick up my history book.
That night, I answered the telephone when it rang.
Mother asked if it was for her, but I said no. I told her
it was the school principal, Mr. Harlow. I told Mother
that I was expelled. Then I told Mother why. She
stood up for me. Mr. Harlow didn't even ask for my
side of the story! How unfair! ! ! I went to another
school, called Cherry Hills Girls School.
In the attic ofmy mind, I always dreamed of a
magical machine to soothe me, and make me more
like the other children.
Love, Temple
172
Dear itfarv*
tìack then, the poor animals were hit on the head
with a hammer. The animals saw it happening, and
they got scared. It was painful, and they felt it! So,
since I love animals, I invented a "Squeeze Machine"
for the animals to go in. it's this ride that the animals
go on, and they get a shot. The shot makes them want
to go to sleep. They feel no fear, and since people
need meat, and we're not going to stop the killing of
animals, I figured out a way to make it more humane.
I've done a lot of different designs; I've even tried
them out myself, so I can see things like the animals
see them. This is my life's work. This is what Fm
supposed to do. IfI can help other people with
autism, that would be a good thing, too.
Bye for now.
Love, Temple
173
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At the closing of the journal, Susan provided a visual conceptualization of autism in the
drawing of a "disability rainbow." She described the rainbow, noting: "Um, this is
(pointing to the beginning of the rainbow) I think this is the beginning when you are
severely, you have like serious symptoms of whatever it is, and then as you go on with
life, you progress, the symptoms get less, and you want to get to the other end."
Writing from the perspective of Grandin, Susan took an opportunity to learn about
someone who bore relevancy to her own life. Susan identified with Grandin' s disability
label and the way that she conceptualized autism, illuminated by Grandin through the
stories about her strides toward "success" in life, as something that changes over time,
bringing one closer to the "other end" of the rainbow. Again, this project highlights
Susan's propensity to engage a creative endeavor by assessing its relevancy to her own
life.
"God must have spent a little less time on you". Finally, Susan shared a story
about a time when she created a Halloween costume based on a song that her favorite
music group performed. The song title provided Susan with the inspiration for a
particularly imaginative ensemble:
. . .they [Toxic Audio] have this one song, which is also a parody of an In Sync song,
urn, they called it "God Must Have Spent a Little Less Time on You" Um (laughs), so
for Halloween in tenth grade, I went to school as the person that God supposedly must
have spent a little less time on. And, I had to explain who I was to everyone, some
people got it. Some others didn't. So he had us go in a circle and urn, share who we
were. And. . . I had these, I had these fake teeth, and if I tried to speak with them, it was
really difficult to understand me. . .Um, so I had to take them out, and I was like, "God
must have spent a little less time on me," and then everyone cracked up. . . And then
my teacher started talking about this music group that sang the song I was referring to,
and I freaked out, because pretty much everybody knows me as the person who loves
this group. See, I have a button (points to the button pinned on her shirt).
175
Thus, it appears that while tapping into a source of serious interest, the group Toxic
Audio, Susan embarked on the task of constructing an original Halloween costume that
was at once imaginative, relevant, and humorous. In this particular story, it also seems
that Susan's creative work led to a connection between herself and her peers (as they
"cracked up" once they heard what her costume was) and a teacher with whom she
shared a mutual interest in Toxic Audio.
As an extension of their assumed "restricted" interests and patterns of behavior
(see DSM-IV-TR, 2000), students labeled with AS are not typically represented as
creatively inclined or expressive. In addition, Harbinson and Alexander (2009) note that
"A major criterion for the diagnosis of Asperger syndrome is an impairment of the
imagination" (p. 11). Furthermore, Emerich, et al. (2003) note, "On the basis of
requirements for humor comprehension, it is a reasonable hypothesis that individuals
with Asperger's syndrome or high functioning autism may have difficulty with humor
comprehension" (p. 254). Having the ability to take the perspective of others and to think
flexibly are among the "requirements" for humor comprehension—and are qualities not
typically associated with AS. As the data presented in this section suggest, Susan
illuminated many instances that serve to disrupt these notions. In particular, Susan seems
to have engaged her imagination in creative pursuits through referencing relevant points
of interest and the use of humor.
In the first example, she cites how the comedie bent of news hosts Stephen
Colbert and Jon Stewart traditionally appealed to her. Before her Government class,
these shows were her preferred means of engaging political knowledge mainly because of
the entertaining quality that the hosts provide. Susan's reference to popular media figures,
176
and particularly the way in which they "just made fun of everybody" in what she
considers "a comedy show" evidence her appreciation for perspectives on politics that
integrate a sense of humor while perhaps referencing contemporary issues and reflecting
values that her generation can relate to. It is perhaps the human quality of these shows—
namely the hosts' ability to underscore the humor in what is typically considered a very
serious arena— that engaged Susan's interest.
Likewise, qualities of Susan's senior year Government class apparently enhanced
her engagement with political study. In particular, Susan identified the relevancy of
turning eighteen and getting to vote for the first time as a distinctive turning point in her
burgeoning interest in politics. Further, the fact that her teacher extended "care" to her
students seems to have appealed to Susan's preference for teachers who display qualities
of personhood.
A second story richly illustrates how Susan employed both humor and relevance
in the writing and illustration of the HPLC book for her Forensics class. In this book, a
sequel to the original that she constructed years before in her Biology class, Susan
appears to evidence an ability to laugh at herself, specifically through the lens of a crush
she had on a musician named Paul (of Toxic Audio). Her illustrations portray her
swooning over Paul, as he responds to her narrative statements with dry humor. One
example can be found in the beginning of the book where Susan wrote, "Now let's
welcome our friends Susan and Paul who voluntarily came back to once again help us
out!" This text is accompanied by a picture of her character (Susan) wearing an outfit that
reads "I love Paul." In the illustration, Susan is hugging Paul with a smile on her face
and her eyes closed. Paul, on the other hand, wears a black suit and stands rigidly, with a
177
surprised and perhaps indifferent expression on his face, with his arms to his sides. There
is a bubble caption coming from his mouth that says, "Define voluntarily." This dynamic
representation of Susan's sense of creativity through the use of humor and relevant
references to her life illustrates how she defies common understandings that position her
by virtue of her label in the following ways: a) restricted in interests (DSM-IV-TR, 2000):
in contrast, she artfully folds a variety of interests such as Paul, illustrating, writing, and
humor into this piece of work; b) irrelevant in her responses (Bock, 2007) to the topic at
hand: rather, she manages to bring to life a topic that can be interpreted as abstract in a
way that captures readers' interest while teaching about HPLC; c) unimaginative
(Harbinson & Alexander, 2009), and d) unable to appreciate humor (Emerich et al.,
2003).
Often creativity that is "reality-based" (Craig and Baron-Cohen, 1999, p. 319) is
positioned in the literature as a limited form or less indicative of imagination. However,
while Susan made references to her own life (i.e. having a crush on Paul), she enfolded
these references into a story that was original and indeed imaginative (in reality, she had
never actually spent time, much less narrated a story with, Paul). Susan's book on HPLC
is an example of how she integrated an array of strengths and interests to create a piece of
work that is whimsical, entertaining, enjoyable to read, and clearly imaginative.
In the third example, Susan talks about the U.S. History assignment that required
her to parallel five pieces of work (plays, movies, etc.) to the Great Depression. For this
assignment, she decided to add a sixth piece to parallel, which was the movie Norbit. In
extending the extra effort, Susan noted "I couldn't resist, I had to bring in my humor."
The parallel she drew between Norbit and the Great Depression is revealed in the
178
statement that "I wasted like two hours of my life seeing that movie," apparently alluding
to the sense of let-down, or "depression" she felt at losing those two hours. In addition to
employing humor to engage creatively in this project, Susan also referenced films (e.g.
Mean Girls) and plays of her choice which, by virtue of being contemporary pieces that
were made within her generation (give or take a few years), seemed to allow her an
opportunity to bring relevancy to the assignment.
The fourth story illuminated Susan's journal from the perspective of Temple
Grandin. While she was impressed with the way that Grandin "came a really, really long
way," Susan articulated how she wished to share Grandin' s measures of success. The
disability rainbow visually represented her conception of success as having a distinct
starting point ("when. . .you have like serious symptoms") and ending point ("as you go
on with life, you progress, the symptoms get less, and you want to get to the other end").
The disability rainbow can be interpreted as a conceptualization of autism that converges
with the popular belief that it is important for individuals classified with autism and AS
to undergo treatment and intervention in order to "progress." Although Susan does not
articulate how one might "progress," it could be inferred from her statement that ridding
of particular characteristics is a goal. This goal is the root of the many intervention
programs designed for students labeled with autism and AS. Susan's apparent
concurrence with the common narrative that signifiers of autism and AS must be
ameliorated in order for success to be met illustrates an instance of what Solórzano &
Yosso (2002) term "minority majoritarian storytelling" (p. 28). While Grandin's story
inspired Susan to pursue the goal of constructing a meaningful life in spite of what her
disability label says about her (e.g. what she cannot do), it is a story entrenched in deficit
179
assumptions—namely, that in order to be "successful," one must progressively lose
characteristics in order to assimilate to majority expectations or "nórmate" standards
(Garland Thomson, 1 997, p. 8).
Finally, in the last story shared in this section, Susan spoke about her construction
of a Halloween costume inspired by the Toxic Audio song "God must have spent a little
less time on you." Clearly, Susan tapped her interest in Toxic Audio and thus her
creativity was tied to a very relevant source. While the relevance to her life was a
prominent feature of the costume however, perhaps even more striking was the sheer
originality of the costume. Susan designed the costume based on an idea—thus, while
the song title was not her own construction, the visual manifestation of how one whom
"God must have spent a little less time on" might appear was of her own imaginative
design.
Besides portraying creativity in constructing the costume, Susan also illuminated
a sense of humor in this vignette. In choosing to dress up like one whom "God must have
spent less time on," she evidenced once again the ability to not take herself too seriously.
The use of "fake teeth" and thus not being able to articulate for her classmates what her
costume was (until she pulled the teeth out of her mouth), for instance, represented a
significant departure for Susan, who is typically very articulate in her speech. Although
being verbally articulate is a characteristic that seems to be favored in Susan's school
culture, she seems to have taken the opportunity in the form of a Halloween costume to
depart from typical expectations—and her everyday reality—for a brief time. In doing so,
she seemed to enjoy the occasion to engage in school in a way that lessened its usual
sense of formality and heightened a sense of playfulness.
180
Susan's forthright and iterative identification of creativity as a driving force in her
ability to enjoy school-based activities represents a shift in thinking about the manner in
which individuals labeled with AS are thought to engage in school. Namely, Susan's
participation does not reflect the rigid and inflexible qualities that are commonly
associated with AS. Her penchant for employing humor and connecting new and
sometimes abstract ideas to "modern" references appears to have opened up possibilities
for her creative expression. Like creativity, Susan identified how opportunities and goals
in many shapes and forms played a key role in her meaningful participation in school. In
the following section, I present data coalescing around this final theme, and share
interpretations of how Susan's stories complicate common understandings of AS in a
variety of ways.
Opportunities and Goals: "I'm Definitely Going to College"
Susan often expressed a sense of gratitude to attend her school, which was a place
that seemed to both inspire and challenge her. She specifically noted that her "school is
very competitive," and realized that "the competition gets heavier once I'm out of
school." Thus, school was a place where Susan seemed to welcome opportunities to
pursue her academic, drama-based, and personal goals, especially those that fostered her
readiness for her next steps in life. Accordingly, opportunities to hone her craft as a stage
performer and to pursue her goals centered the areas of auditions, rehearsals, and college
preparations.
As she discussed and represented instances of opportunities that she engaged as a
student, I observed Susan to convey her ideas with a sense of humor, emotional
expressiveness, and thoughtful articulation of the way that others have enriched her life
181
and her participation in school. Her insights specifically interrupt deficit-based narratives
on AS that equate areas of strength or intense interest with pathology (e.g. characterized
for example as "obsessive" preoccupations in Carrington & Graham, 2001, p. 42) or as
contributing to "inappropriate" behavior. Likewise, there are several instances within
these data that disrupt common narratives that position individuals so labeled as lacking
the ability to take the perspective of others.
Auditions. Susan often expressed hopes of getting into school shows. While she
auditioned every year of high school, she noted how difficult it was to actually get into a
show because there was so much talent and competition amongst the student body. At
one point, Susan talked about the thought process she went through during her first year
in the school, when she considered leaving and going to a different school. However, she
came to the realization that although staying at her high school posed challenges and
potentialities for frustration, she ultimately valued the opportunities it offered:
. . .toward the end of freshman year, I was thinking of transferring to another school
that was much smaller, like my middle school was. Two of my best friends go there,
and they love it. So I was thinking about it and then sophomore year came and I saw
the school musical which was Hair, and I really, really loved it. A lot of people didn't
like it and I don't get why, because I thought it was amazing. But, I loved it and I
realized that I want to go to a school that does shows like that. . . And I want to get into
those shows. And I never did, but I wanted to (laughs).
Though she did not get into school events during her first three years at her school, she
persevered in trying out once again during her senior year. Early in the school year,
Susan talked about having just auditioned for the school's talent show, and specifically
about trying out for two pieces—one monologue and one in collaboration with others
because she noted, "I have more of a chance of getting in that way, and it'll be my first
time getting into any of these school events." Later in the school year, Susan discussed
182
her acceptance into the talent show after having auditioned. While her monologue did
not get in, she discussed how she felt relief in retrospect:
. . .my monologue didn't get in—now that I think about it I'm kind of relieved just
because it was original and it was really, really personal and I don't know if I could
say all that in front of a million strangers and my parents because some of the stuff in
it is stuff that I don't really talk to my parents about. I talk to my friends about it but
like my parents don't really know everything that's going on so I'm not really sure I
could do that.
Despite not getting to do a solo performance, she was accepted into a collaborative piece
in which she would be performing with a group of her peers.
The antiwar piece got in so I'm happy. . . plus urn, the two people who were
organizing the antiwar piece asked me if I wanted to be part of it and so I said
"sure". . .the two main people, they organized it, they thought of everything that is
happening and then they found people to be in the background and help them out. I'm
one of the people in the background. I don't have a huge part, so I'm not going to go
all crazy egomaniac on anyone. . .but it's nice to be in like a school event. And I'll
probably have stuff to do in the finale because the finale incorporates everyone.
While she acknowledged that her part in the piece would be small, Susan's participation
in a "school event" was a long-standing goal that was finally met.
In another discussion, Susan talked about her first audition and interview for a
college program, the learning curve she navigated, and how the experience which she
deemed "okay" would inform subsequent college interviews and auditions:
. . .Other auditions have gone better for me. I didn't feel very comfortable during the
interview portion, because the guy asked me questions I had no idea how to answer.
One was, "Tell me everything you know about acting" and the other was something
like, "What are the 3 most important things you think an actor needs?" Then during
the actual audition part, I forgot one line. I went straight to the next line that I
remembered, so that wasn't so bad. But I'm a lot more upset about it than I should be,
because I have such a good memory and I almost never forget lines. So when I do, it's
a really big deal for me even though I know that it actually isn't that big of a deal. But
this was also my first college audition, and I think my next two will go better.
Susan's frustration over forgetting a line despite her typically reliable ability to memorize
seems to have been taken in stride, in light of the fact that this was her first college
183
interview attempt, which would inform her ability to do better during subsequent
interviews. When discussing specific questions that were asked of her during this college
interview, Susan alluded to the ways they helped prepare her for future interviews:
[When responding to the prompt "Tell me everything you know about acting"] I froze
for a few seconds, and then I talked about Stanislavski's method, which is what I've
been learning. Mostly it helped me prepare for the interview portion [of upcoming
college interviews]. My mom had been helping me with that before my Local
University audition, but she asked me more personal questions related to acting (such
as who my favorite actors were), and I wasn't ready for the very general topics. So I'll
have a better idea of what to say if I'm asked those types of questions again.
Participation in auditions for school performances and for college admissions played an
important role in Susan's endeavors to meet current and future goals. To this end, Susan
said, "I'm very grateful that my school helps me with my acting, because it's what I've
wanted to do my whole life."
While auditions gave Susan the chance to work on skills that were transferable to
a possible career in drama performance, rehearsing for performances allowed her to
specifically focus on memorizing lines and preparing for scenes in which she was already
apart.
Rehearsals. Susan identified rehearsals for school performances as an avenue for
pursuing her goals of honing her drama-based skills. In the following excerpt, Susan
shares some of the frustrations that she experienced in preparing for the semester's Final
performances, and also identifies how her strong ability to memorize aided her
preparation:
. . .(rehearsals) just felt really disorganized for awhile. We had a rehearsal schedule but
it would constantly get changed so that was stressful. . .1 felt ready to perform as an
individual, but it took me until like the night, or two nights before the actual
performances to feel ready as a class. . . my dramatic scene, we rehearsed on our own a
lot, and we got our lines down quickly. In my other scene, the game show one, some
people, a couple people didn't know their lines and it was the week before scenes, and
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that was stressful. I do memorize things quickly, and I don't expect people to
memorize things as quickly as I do, that's just a trait that I have. And I keep that in
mind, and I think that a lot of the time it prevents me from getting annoyed with
people that don't memorize quickly, but when it gets to a week or two before scenes, I
think everybody should know their lines. Especially people who have like a very small
part in the scene and don't have a lot of lines to memorize. That's what happened in
my scene—people with the smaller roles had more trouble memorizing the lines than
the people with the bigger roles. I didn't really get that. Then after awhile, it wasn't
the lines that gave people trouble, it was the cues. And because people didn't know the
cues, it seemed like they didn't know their lines.
While she was able to tap into a significant strength in preparing for her scenes, the
ability to memorize lines with agility, Susan appears to have balanced her frustration for
her peers' seeming lack of motivation to prepare in advance with a realization that not
everybody shares with her the "trait" to "memorize things quickly."
Perhaps the most significant goal that Susan identified was getting into college.
The goals she pursued around college preparation included negotiating others' diverse
opinions in regards to her readiness to go to college as well as fears of losing touch with
trusted others upon leaving high school, auditioning and interviewing for particular
programs, and concerns about transitioning to college life.
College preparation. The topic of college, and particularly the issue of getting in,
was significant and recurring during Susan's interviews. Her decision to attend college
was not void of difficult issues that she had to work through. Though her commitment to
going to college was firm, which she made clear in her contention, "I'm definitely going
to college," Susan expressed mixed feelings in regards to making the actual transition
from high school to college. An early interview suggests that she negotiated some
concern about severing ties to people while considering that transition:
It's not just college applications and auditions that I'm worried about; it's, over the
past four years, I've gotten very attached to my school and I don't want to leave that,
I don't want to leave my drama teachers, I don't want to leave the people that I've
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become friends with. One of my biggest fears in life is losing touch with people. I had
the same fear ofthat in middle school. . .1 lost touch with a few of them but I still hang
out with them occasionally; we are just not as close as we were when we went to the
same school. So like I'm worried about losing touch with people; even the people that
I don't see very often but I know them because we're both drama majors, I'm going to
miss them, 'cause I've seen them every day in the basement for the past four years,
and I'm not going to get that anymore.
Later, Susan revealed another challenging element inherent to her decision to purse a
college education directly after high school: her parents' diverse opinions about her
readiness to do so:
Susan: I'm definitely going to college. Um, my dad keeps telling me that it's ok if I
want to take a year off. And apparently my mom told me that he is emphasizing that
because he thinks that I'm not ready for college, I'm not going to be ready for college.
Um, and I don't know, I don't see why he thinks that. . .Um, I don't feel ready for
college right now. But by the end of this year, I think I will be. . .
Carrie: Great.
Susan: I don't know, my mom told me, I think a few days ago, maybe last week. . .that
he's convinced that I'm not ready for college and I should take a year off and she says,
she disagrees because she says that from what she's experienced people who say
they're going to take a year off college never wind up going. Um, and if were to take
a year off, I'd make sure that that didn't happen, and that I wound up going.
Carrie: Right. What do you think you'd do if you took a year off? What would you do
in that year?
Susan: Um, if I were to do it, I'd probably audition. Because I want to continue
theater.
Carrie: . . .So you are definitely applying to North University. And what other thoughts
do you have if that doesn't. . .fit?
Susan: I'm applying to North even though I'm questioning whether or not I really
want to go there. . .Other schools that I actually looked at were [Local public
university] and [Local private, prestigious university] and I love them both so I'm
definitely gonna apply for them. I already sent in my [Local public university]
application, I just need to schedule my audition. . . 'Cause for all of them I'm trying out
for theater.
Carrie: . . .it sounds like you're so on top of it. . .it really doesn't sound like you're
taking the year off. . .
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Susan: Um-um. No, I really don't see why my dad keeps bringing that up. . . 'Cause I
feel like I'm on top of it. . .But, I don't' know, he thinks I'm not ready, or at least that's
what my mom says. For all I know she could have completely misunderstood it. That
happens a lot. There's miscommunication between them and of course I get confused
because there's miscommunication between them and then one parent gets mad at the
other for saying something that isn't true. Generally my mom's the one that gets mad.
That's just the way things normally happen. Um, and then we have to, we have to, this
also generally happens when I'm at my dad's for the weekend, I don't really get it.
But then we have to call her and put the phone on speaker and sort everything out, and
that's just irritating.
Toward the end of the school year, Susan returned to the topic of college, this time to
share her thoughts on how it felt to be accepted to the college that she regarded as her
first choice:
Carrie: You've been accepted to your first choice school. . . how has. . .knowing that,
affected your outlook now for the rest of the school year?
Susan: It's a lot less stressful, because I know we talked about this last time, how all
my college applications are done, so that is a big weight off your shoulders. But once
you hear back from a college, especially one you really want to go to, it's even less
stressful. . .even though it's the end of your senior year, and there's still a lot of stress
going on. . .and there's transitioning into a new school- a lot of people are moving out
of state. I'm not one of those people, but a lot of people are. And it's good to know
you are going to be happy for the next four years and getting into your first or second
choice college is very relieving.
Thus, it appears that her acceptance into college, and her first choice school at that,
marked yet another goal that Susan had met during her final year in high school. Her
engagement of her parents' opposing opinions on her readiness to go to college factored
into her consideration of making the transition to college life. Further, Susan's mother's
involvement in the preparation for her first college interview seems to have supported her
confidence going into that first round; and that particular interview appears to have
informed her ability to participate with an even greater sense of preparedness for her
subsequent interviews and auditions.
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There are several points within these data that contribute to a dynamic
understanding of Susan's participation in school in terms of goals and opportunities that
she pursued. The stories she shared highlight competencies she engaged, such as the
strong ability to memorize and to meet goals by uniting with others, and thus interrupt
common discourse on AS and schooling that positions students so labeled in terms of
assumed incompetence.
First, the areas of auditions and rehearsals bring to the fore how Susan's strong
ability to memorize constructively aided her ability to prepare for her auditions and
performances. This strength led to early preparation for her roles, if occasionally
contributing to frustration with her peers for not preparing in advance as she did. Often
students labeled with AS are thought to display strong memorization skills in areas of
significant interest, mainly to meet "self centered" (Myles & Simpson, 2002) ends.
Further, significant areas of interest or strengths are thought to contribute to "restricted"
or "stereotyped" (see DSM-IV-TR, 2000) and thus inappropriate behaviors. Susan's
stories around the topics of college interviews and school rehearsals in regards to
memorization, however, oppose these contentions, and instead reveal the focused manner
in which she employed her strengths in the pursuit of meeting long-standing goals and
honing her craft. While she utilized her agility to memorize to help her reach personal
goals (e.g. getting into college; preparing for scenes), they also enabled her collaborative
participation in scenes that involved many of her peers (such as in the talent show piece
and those in the Final performances).
Second, Susan's participation in a collaborative anti-war piece in the school talent
show illustrates how she united with others in pursuit of meeting the long-standing goal
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of getting into a selective school event. She seems to have valued the ability to
collaborate, not only by virtue of the potential it bore for her "to be in like a school
event," but also because she admired her peers' abilities, as suggested in an earlier
comment about the talent that existed amongst the student body, and alluded to in her
discussion about the school's production of the musical Hair.
Further, in a few instances, Susan displayed the ability to take the perspective of
others. In each instance, she seems to have considered others' perspectives in the process
of formulating her own ideas around topics such as the acceptance and rejection into the
talent show and her readiness to go to college. One instance of Susan's ability to
perceive others' thoughts was when she discussed how the rejection of her monologue
prompted her relief that her parents would not be hearing some of her innermost
concerns. She noted that while her "parents don't really know everything that's going
on" in her life, she was glad that she would not have to share sensitive information with
them on stage. She also took the perspective of others when discussing rehearsals for the
Final performances, specifically explaining how "people with the smaller roles had more
trouble memorizing the lines than the people with the bigger roles. . .Then after awhile. . .it
was the cues. And because people didn't know the cues, it seemed like they didn't know
their lines." Finally, Susan illuminated her understanding of her parents' diverse
perspectives about her readiness to go to college, indicating that while her mother felt she
was ready and encouraged her to go to college directly out of high school, her father felt
she might benefit from taking the year off.
Next, Susan highlighted her ability to initiate, maintain, and value relationships
with others through her discussion around fears of losing touch with others that she had
189
established long and trusting relationships with through the high school years. While she
commented that she had lost touch with her middle school friends and spent time with
them only "occasionally," she observed, ". . .we are just not as close as we were when we
went to the same school." Thus, while she anticipated the transition to college with
excitement and relief (e.g. upon getting into her first choice school), it also signaled for
Susan elements of sadness and possibly loss. Her concern over potentially losing
friendships as well as her reference to the comfort of seeing trusted others on a regular
basis, such as in the "basement" of the school (where drama courses were held) suggest
that Susan regarded relationships as pivotal to her meaningful engagement in school.
This observation, however, contrasts traditional renderings of AS, a classification that
hinges upon assumptions of social deficiencies.
Finally, Susan once again displayed the ability to engage in discussion with a
sense of humor. This was specifically apparent in her comment in regards to being
accepted in the collaborative anti-war piece, in which she mused, "I don't have a huge
part, so I'm not going to go all crazy egomaniac on anyone. . .but it's nice to be in like a
school event." As these stories and representations suggest, Susan's interest in
performing arts played a major role in her life as a student. I move now to a discussion
about the various facets of experience that she integrated to inform her adolescent
identity.
Susan's Adolescent Identity: A Summative Discussion Engaging Three Lenses
Susan's insights on issues regarding school participation can be understood as
revelations borne of her engagement with three primary lenses: peer/friend, student, and
AS/disability. While they are not easily disentangled, each lens contributed to Susan's
worldview and informed her identity as an adolescent student on the verge of embarking
on a new life chapter, college. In the following sections, I discuss Susan's construction
of an adolescent identity in terms of these three primary lenses, drawing on previously
presented data as well as additional data culled from all three sources to provide a
summative chapter discussion.
Peer/Friend
Susan's ongoing concern about sustaining valuable relationships is threaded
throughout her interview discussions. In nearly every issue she addressed during the
study, she identified the human relationships that were at the foundation of what she
found meaningful. As she shared her experiences as a high school student who relied
heavily upon her friendships for support, she spoke about them against the backdrop of
her former school years, which she reflected upon, conveying some of the difficulties she
contended with as she struggled to maintain friendships with her peers.
When she spoke of her early school experiences, Susan often referred to the
smaller schools that she attended prior to entering high school. In comparison, high
school "just seemed so huge," particularly during her freshman year as she managed the
transition from middle school. While attending smaller schools in elementary and middle
school, Susan said that she enjoyed the closeness ofthose communities, where she knew
the students well, and established several enduring friendships. Those years were not
without their challenges however. For instance, Susan talked about a situation during
elementary school when "I made this one friend in my class and we would get into these
huge fights over like really small things, and half the time I wouldn't even know what I
191
did that upset her." The stress she encountered as a result of these "fights" was not
alleviated by resolution due to the fact that, as she noted, "we'd go to teachers and faculty
about it, and they wouldn't really do anything."
Remembering an incident that involved her wearing a hat made of fake animal fur
on "hat day" back in sixth grade, Susan shared:
I was getting something for lunch and all these kids accused me of wearing a fur hat
and calling me like an animal killer because it was a fur hat, which it wasn't, it was
fake, and I was trying to tell them that but they were too busy yelling at me for killing
animals.
While the incident ended with the offending students being directed by the Vice Principal
to apologize, Susan discerned disingenuity in one of the students' apologies. She recalled,
"...it was kind of clear that he was only doing it because he was kind of pressured into it.
And I accepted it anyway, because I don't like holding grudges against people." Thus,
while Susan felt ganged up on, at the same time she felt grateful that faculty stepped in to
moderate students' tensions. Though she said she thought she was happy in her
elementary school while there, upon commencing middle school, she realized in
retrospect that her elementary school had not been "that great," referring specifically to
the way adults moderated (or failed to moderate) students' problems. Reflecting upon
early contentious incidents with peers seems to have supported Susan's ability to
articulate the value she held for spending time with friends, acquaintances, and teachers
who scaffolded her growth over the four years of high school. She spoke directly to this
value when sharing her concern about "losing touch with people" and her sentiment
extended even to "the people that I don't see very often. . . 'cause I've seen them every
day in the basement for the past four years, and I'm not going to get that anymore."
192
As her engagement particularly during her lunch hour and in drama classes
suggests, Susan's spirits seemed to lighten when she was amongst trusted friends and
peers. Attending a high school that beckoned her deep respect and cultivated her dream
of getting "into those [school] shows," Susan subsequently spent her days with others
who shared her passion for the arts. While she described one of her friends as a person
who "gets into everything that she tries out for because she's just one of those really,
really talented people," Susan also mentioned the hard work that the friend put in after
school hours: "she does work outside of school, like during the summer, she's usually
in. . .at least one show." Susan acknowledged the "very competitive" spirit of her school
but also appreciated the collaborative efforts students engaged in. She specifically talked
about the importance of students trading pieces of advice on topics related to their craft,
noting, for instance, that she could learn from "what other people my age have gone
though when auditioning," to enable her preparedness for auditions once she was out of
high school. It appears that layered upon the gratitude Susan felt for going to her school
was the reality that her peers also beckoned her respect.
Student
Susan's sense of agency, the active role she assumed in pursuing her educational
goals, seemed evident in the way she talked about her participation. She noted that she
sat in the front row during class not because she "technically" needed to, but because she
felt "it's just better" for her to do so. She also alluded to the liberty she felt when she was
given free range to tap into her creativity and to infuse humor in projects that were
somewhat open-ended, such as the Great Depression project she completed for her U.S.
History class. Susan employed the wider swath of freedom cut in her drama classes to
rehearse in ways that she deemed most effective. To this end, she tapped into her ability
to memorize with agility to assertively prepare for her roles. When describing her plans
to apply for college early in the school year, Susan noted that although her father did not
consider her to be ready for college, she was determined to surge forward with her plan,
and iterated how "on top of it" she felt in light of all of the requirements necessary to
proceed with applications.
Identifying with qualities in other people seemed to enable Susan to expose her
vulnerabilities because having a personal "connection" fostered "comfortable" learning
environments. This was particularly evident when she discussed several of her teachers,
namely her Government teacher who "obviously cares" about her students, and who
helped initiate Susan's interest in politics, a subject that "used to really, really bore" her.
Likewise, Susan's realization that her drama teacher shared her interest in Toxic Audio
segued into a congenial dialogue that the two shared over the course of the school year.
Another drama teacher shared her tissues with Susan when students sang "sad songs," an
act that fostered a connection based on their similarly "emotional" responses to the songs.
Susan also articulated how she appreciated the spontaneous nature of her drama
courses, and found significant meaning in some of her drama teachers' propensities to
push her to confront challenging aspects of her work in order to "grow." Susan thus
acknowledged and honored both the cultivation of comfort and the negotiation of
discomfort in the process of pursuing her goals as a "person" and as an "actor."
AS/Disabilitv
Integrating disability into her identity has roots in Susan's relationship with her
grandfather, who Susan noted, taught at a renowned university. However, she also
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expanded on her ideas regarding autism and AS in light of other life features. When she
reflected back to fifth grade when her mother shared with her "for the first time that I was
autistic," Susan represented one of the ways that she negotiated this new information,
through the engagement of a journal assignment written from the perspective of Temple
Grandin. As a high school senior, Susan centered the topic of her relationship with her
grandfather in one of her college essays. She explained the significance of this particular
essay:
These are my college essays. Um, and I wrote two because one was about a more
serious subject I guess. It was, it was sad. It was about the relationship I had with my
grandpa. And that part's happy, but it's sad because he got bone cancer and he's not
with us anymore. I was sad. But it's about how we had a connection, urn, because it
was never proven, but my parents are convinced that he had Asperger's, which I have
too, so we were able to connect through that even though neither of us knew that we
had it. We just spoke, we spoke to each other in movie quotes, nobody else understood
what we were saying, but we knew what we were saying.
The reference to her grandfather and her centralization of his memory in a college essay
highlights the value that Susan held for this person—who clearly imprinted her life in
meaningful ways. In this case, it appears that although he is gone, she continued to learn
about herself and about what it means to "have" AS from him and from the relationship
they shared.
Figure 4: Susan's College Essay
My gran:df»tht>T,|^m|^mwaií "»* qumtessefttlal
AsMNraiftdi·*! professor. He was * Hin» historian who nmvmhemì
Ae nasses wf €very Ui player « » movie, bat If «cmeoaa walled in
with a haircut,. |„, woiildn't »rogai«* the person. H# loved having a
Jirandehild, b«t he especially loved that 1 had the «Wlity to
»»OTÍ» hug« chunks of scripts from television and movies, (ft
terns oat that we both had thé sae« neuwlcgical disorder, bot
that s another »tory.) Gm day. we »it oa his couch and baited all of
the li»fs to Skí-w White back «*d forth, with«,« taking one break.
My «„titer thoHghr it was « nightmare, olrt th* two of es had « gré«
E¡»e. i was afeli· tu cone«t with him ir. a way that he never could
with hit own children, The special c<jmnuRi<;a»fc>ii we sa«*«!
between «s «ally helped Men ftro«gh the tat few y«r, „f bit, Uf*.
Being five yNn „Id. I didn't really underetand th« concept of
death, only thftt Wy math« told me th*t hv was alme« 'finished
Hvlitg.- During his final months, hi« family hetf t,, take care of him
in shifts. My mother had ait almost pathological fear of siMft. »
daring out shift shft wt,ttld smid me jn fim fo grget ^ ( ^^
the most tactful child. Once» i walked in and thought he wasn't
breathing, so I yelled, "Moni! I think he's already dead!" Even in his
condition, he got such a kick out of my announcement that his
lawghter filled the room. He then said, "I'm not dead yet," At that
point, everyone knew it was safe to come in.
On another occasion, I went to my grandfather and asked him
who played Aunt DMi in the movie Heidi. He thought for a moment
and told me, "Helen Westley." I said, "No, Helen Westley played
Blind Anna." He was taken aback for a moment because he wasn't
used to being corrected, but then he said it was Mary Nash. Again, I
said no; she played Fräulein Rottenmeier. He then pulled his frail
body oat of bed, and when I asked where he was going, he said, »To
look it up.« As he was looking for one of his books, I asked in all
seriousness, "Granddad, don't you ever read the credits?" Even,
though he sounded irritated, my mother could tell that he was
pleased to have been one-upped by his granddaughter. We found
out that Aunt Didi was played by Mady Christians, but what I've
learned now is that what was uniquely my grandfather's has been
197
passed to me, (my mother finds it both maddening and reas
and this shapes who 1 am today.
Early recollections of their time together, when they "spoke to each other in movie
quotes" supported Susan's ongoing evolution of an identity that includes a disability
label. Having someone with whom she was very close share her disability classification
(at least as her family speculated) appears to have enriched her sense of identity through
this particular lens.
Likewise, writing from the perspective of Temple Grandin, a high-profile woman
labeled autistic, was a meaningful venture because as Susan conveyed, "she came a
really, really long way, and she's able to give speeches and she's able to be really
successful and that was something I wanted to be able to do." Like Susan's grandfather,
Grandin grew up to teach at a university, among other things. Susan's perception of
herself as a student with a disability also evolved through the school experiences, which
were predominantly mainstream, that defined her school years from an early age. The
accommodations that aided her participation in inclusive classes took the form of a
paraprofessional during her elementary years and a period per day of Resource Room and
entitlement to "time and a half on exams during her high school years.
198
When she spoke of her AS label, Susan did so in the contexts of her grandfather
and of Temple Grandin, and alluded to an understanding that disability is something that
can possibly "lessen" as one grows. This is particularly evident in her description of the
disability rainbow that she drew in fifth grade, about which she explained: "as you go on
with life, you progress, the symptoms get less, and you want to get to the other end." The
conception of disability as a facet that one aims to dilute or rid of is often highlighted in
popular media, especially in regards to autism. Indeed, Temple Grandin asserts in her
first autobiographical work (1986) that she "emerged" from autism. Susan's
understanding of disability has a foundation in her own early classification of autism and
later modification ofthat label to AS. Her newer label of AS, and thus her "higher"
functionality (if using the spectrum metaphor, which Susan's disability rainbow arguably
parallels) seems to signify that her "symptoms" have become "less" "severe." Susan
references two individuals who, while integrating disability into their lives, also pursued
a professional life with high-status jobs as adults. Susan's role models for AS are thus
individuals who appear to have ended up on the other end of the "disability rainbow."
Susan's stories offer much to a growing understanding of the intersection of AS
and schooling. As I have asserted in this chapter, they often complicate and/or counter
common narratives around AS. Her stories underscore how she employed the multiple
characteristics that have simultaneously made her uniquely human and led to her
classification of AS to enable her capacities and instate her competence. Considered
collectively, her stories of course provide a representation that contrasts typical narratives
that invariably delineate qualities and characteristics that are assumed to be lacking in
students labeled with AS. Susan instead shares how her "traits," interests, and values are
199
both integral features in her ability to find meaning in school as well as the fuel for an
abundance of goals and pursuits. At the same time, Susan's stories seem to reveal how
some of the markers of her success, such as the opportunity to attend a highly competitive
school, acceptance into a show at that highly competitive school, and acceptance into
college, would be recognized as such by "normative" standards. That is, the goals she has
met might be universally accepted as instances of "success" by virtue of their conformity
to normative expectations. Since Susan's markers of success often resemble normative
expectations, her stories might inspire the question, "So why is she labeled with AS?"
This question hinges on the assumption that in order for one to experience AS,
she/he must conspicuously "show" characteristics such as those outlined in the DSM. It
also alludes to the idea that AS is a category that one might indeed "emerge" from
(Grandin & Scariano, 1986) or "overcome" (Linton, 1998). Susan's stories help to
illuminate how the practice of unequivocally equating particular behavioral attributes and
/«abilities with AS primes the perception that if one appears "normal," and specifically if
one's behaviors seem to conform to widely-held conceptions of "normal," then they must
not experience (or "have") AS. Inherent to this realization is that looking to behaviors
alone to inform perceptions about individuals' minds at best leads to superficial
understandings of those minds. Looking at Susan's "successes" in isolation, for instance,
eclipses the complexity of her engagement, the various features that complemented,
constricted, and complicated her ability to reach those goals. Attending solely to
behaviors exhibited with disregard to individuals' perspectives on those behaviors does
little to teach about what it means to navigate the world and indeed to meet "success,"
variously defined, with a label of AS and by extension, disability.
V- ALEX
Alex: The snow's picking up.
Carrie: Yeah, it is picking up.
Alex: If we keep that up for the rest of today, and all of tomorrow, we might have a
considerable amount of snow.
Carrie: We might.
Alex: But global warming is probably going to destroy everything.
Carrie: What do you mean?
Alex: Well, if all of the glaciers and ice caps melt, the sea level is going rise by 40
feet.
On an especially wintry day, Alex and I sat in a diner catching up after a lapse of
a year and a half. It was our first interview for this study, and this particular exchange of
words captures several of the features I would notice in Alex over the course of the
research. Observant, analytical, and attuned to details, Alex engaged in our discussions
with frank honesty, frequently bringing in his knowledge ofparticular subjects including
local and global issues, and often attending to social, political, and/or economic
implications of particular phenomena. Alex also infused a multifaceted sense of humor
into his stories—a characteristic that is illuminated within the many stories he shared,
highlighted in this data chapter.
As a freshman in high school and fourteen years old at the time of the study, Alex
was interested in a variety of subjects including videogames, cars, ammunition, and
building construction. Particularly interested in war history and weaponry, he had an in-
depth knowledge of diverse types of ammunition and their use in current and historical
battles. This is a topic that weaved its way in and out of our conversations, in terms of
school-based experiences as well as during "off the tape" discussions. Alex's interest in
this area was not popular amongst his peers, and he therefore expressed frustration with
the reactions he received from his classmates when he attempted to share his wealth of
knowledge. An interest and source of confidence that allowed him to forge connections
with peers, on the other hand, was playing videogames. In his school, he was known as a
master or "expert" game player, and many times I witnessed several of his peers gather
around him as he played so that they could catch glimpse of his strategies.
In a busy section of the city, Alex's school enrolls students with a variety of
disability labels. Students are categorized within the structure of the school's academic
curricula, which differ according to the determined academic ability level(s) of each
student. A component of the organizational process that is additionally taken into
account when determining the curriculum each student will receive is the particular
disability label the student has. In Alex's case, his dual classification with both Attention
Deficit Disorder (ADD) and AS qualified him to be placed in classes with students who
were thought to share similar qualities by virtue of their classifications. Within the
school's organizational scheme, attention is paid to students' strengths in terms of
learning modalities. For Alex and his classmates, this means that they were thought to
learn best when given opportunities to visualize information. In theory, teachers of
students who are thought to have a propensity to learn visually construct curricula to
accommodate and foster this learning modality. In reality, I observed few teachers who
actually veered from a lecture-style format, where information was mainly exchanged via
verbal interaction. The constitution of the classes in Alex's school changed very little
throughout the day and students shared most classes with one another as a consequence
of this sorting system. This configuration allowed Alex and his classmates the
opportunity to get to know one another well, and with each class capping between 12-15
students, it also seemed to provide teachers the opportunity to get to know their students
in some depth.
Although Alex spent the majority of his school day with the same classmates, he
nonetheless expressed that particularly since he did not "dress flashy," he was not easy to
"pin down," a reality that he seemed to appreciate in light of past experiences of being
singled out as "strange" by his peers. Asserting that "facial emotions take too much
energy," he typically wore a serious look on his face and dressed in blue jeans, solid
colored t-shirts, and sneakers.
Regardless of the weather, Alex walked to and from school each day. He lived in
an apartment roughly a half hour walk from his school with his parents, who were both
employed full-time. He navigated the streets as determined and as efficiently as any
longstanding native of the city. On some days, I walked with him after interviews, and as
we strolled the streets we talked mainly about videogames, war ammunition, favorite
(and less than favorable) restaurants we passed along the way, and the politics of
choosing not to conduct our interviews at the big business coffee corporation that seems
to have taken over every corner of the city. Alex initiated all of these topics and
conversations and in doing so exposed the kinds of thoughts that had been cultivating in
his mind over the past months, maybe years. As a researcher, I found these "off the tape"
outings to be welcomed opportunities to learn about his interests and dreams that
stretched beyond as well as fortified his in-school experiences.
On a typical afternoon upon leaving school Alex sometimes did chores for his
family, such as stopping by the grocery store to pick up needed household items on his
way home. Once at home and after finishing homework he spent his free time playing
videogames, listening to NPR (National Public Radio) and/or shows on the History
Channel, or occasionally hanging out with friends.
Alex often seemed academically and socially disillusioned with school, and
particularly with the capacity of the curricula to engage his interests. As the data in this
chapter suggest, most of his classes did not engage him (there were, of course, exceptions
to this, notably in regards to his Art class) mainly due to what he described as teachers
choosing subjects and subject matter (e.g. specific novels to read) that did not interest
him. He noted that if subject matter did not interest him in the beginning, there was no
chance for it to "become" interesting to him as the unit of study progressed. He iterated,
"You can't make something more interesting. It has to be interesting from the start. It
can't become interesting, either it's interesting or it's not. It can't become.'" At least, he
noted, he felt his first year as a high school student was "a lot better than being a septic
tank technician."
I move now to draw from observational field notes and interview data to discuss
Alex's school participation. The data contribute to an understanding of the way that
Alex's actions and thoughts at times seem to conform to common notions of AS (e.g. he
stated that he prefers to work alone) and at other times challenge those notions (e.g. Alex
interacted with others with apparent ease during Art class). Thus, an exploration of what
it means to navigate school with a label of AS is considered with particular attention to
the role of context in Alex's ability to engage meaningfully in activities and projects.
Alex's Participation: "With Most People Fm Grouped with, AU Hell Breaks Loose"
At several points throughout the research, Alex asserted that he was far more
comfortable working alone than with others, and he supported his assertion with the
comment that "With most people I'm grouped with, all hell breaks loose." Indeed, I
noticed that within most classroom contexts, it most often appeared that Alex preferred
working alone. However, in contexts that veered from the school's traditional classroom
set-up (e.g. non-traditional set-ups might be one where students shared a computer
instead of sitting in desks) Alex engaged in dialogue and when allowed to, played
videogames with his peers. Likewise, observing Alex during lunchtime, in-between class
periods, and at school dismissal enabled my ability to understand different ways that he
engaged with his peers and friends. Many times, I witnessed what appeared to be sheer
joy in the peer-to-peer exchanges he engaged in, particularly those that took place after
dismissal on the steps of the school's façade. Alex's wide smiles as well as the difficulty
I encountered in "pulling" him away from these post-school interactions informed this
observation.
In Classes
Small class sizes seemed to enable a very popular configuration of seating in
many of Alex's classes. In Language Arts (there were three total), Science, and History
classes, tables were arranged in a U-shape, with the teacher at the front of the room with
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a dry-erase board at his or her back. In these classes, Alex typically sat toward the back
of the room, often at the bend of the "U." He almost always appeared to be focused, an
observation confirmed each time he pulled out his binder, opened it to the page
containing the content of the day's lesson, and arranged his materials alongside it.
During lectures or class discussions, Alex often tilted back in his chair, or fidgeted with a
pen or other nearby object. He appeared to remain attentive to the dialogue, and
sometimes he appeared uncomfortable being called on randomly by a teacher.
During different types of participation structures within these classes, whether
collaborative or independent, Alex preferred to work by himself. Often when he was
expected to collaborate with others in small groups, his group mates complained that he
did not contribute to the in-group discussions. Alex contended that he was not a "team
player," mainly due to his propensity to remain quiet during small group work. However
I noticed that he did sometimes participate dialogically when grouped with his peers,
specifically when his participation was scaffolded by a teacher rotating from group to
group. During class-wide discussions or lectures, Alex was overall quiet, though at times
he raised his hand to contribute a response to a question, and when called on by a teacher
he often conferred his notes or answered the question if he had a response ready.
Alex's Math class was structured loosely in comparison to the previously
mentioned academic classes. Rather than lecture, his Math teacher provided multiple
white boards covered with data—numbers, algorithms, word problems and so on, in
which students were expected to refer to in completing the day's assignment. Students
progressed at different rates, and as they worked, the teacher wandered around the room,
periodically checking in with students, and offering help at his desk for students who
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wished to take the opportunity. Once Alex finished the day's work, he used his free time
to play videogames. Several of his classmates joined him, if only to watch over his
shoulder as he played. I observed Alex conversing over videogames with his peers more
readily in this class than in any of his other academic classes, which Alex attributed to his
teacher's willingness to allow students to play. Thus, although Alex described himself as
a struggling math student, noting that his "math gene is failing," he nonetheless used this
class period to pursue his interest in videogame playing, noting how "He [teacher]
doesn't stop me" from doing so.
During (computer) Art class, Alex shared a computer with a student who he
identified as one of his friends. The structure of this class was reinforced by the teacher
at the beginning of the period, as well as during intervals throughout the period, as he
clearly articulated (verbally) the expectations for students' work during the period.
Typically, students engaged in long-term projects and worked either collaboratively with
their computer partner or took turns doing individual projects using the same computer
during the period. Alex described his Art class as his favorite, mainly due to the element
of freedom to choose how to construct his projects, given certain parameters and
materials (i.e. using a program called Sketch-up). When working with his partner on a
particular project called the "Twins Project," Alex smiled, laughed, talked a lot, and
stepped in to help his partner with an element of the project that was proving to be
difficult for him. His participation in this particular class was thus active and apparently
engaged.
Two classes, One-on-one and Study Hall, were structured in such a way that
allowed teachers and/or students to individually tailor the way the time was spent. One-
on-one was a course wherein the student received individualized attention from a teacher,
and in that time he/she could work on long-standing projects from other courses or on
areas in which he/she experienced difficulty. When asked his thoughts on receiving
individualized instruction each day in his One-on-one class, Alex shared the following:
Alex: I both hate more attention and like more attention. Next question.
Carrie: Can you unpack that a little bit? Can you explain what you just said?
Alex: Yeah. Well attention can be good if you want to say something and attention
can be bad if you are trying to do something in secrecy. What's good about running at
an enemy and you know, placing like. . .a charge to blow down a wall. . .when your
enemy is looking right at you like watching you do that? Of course, that's no fun.
Then again, if you are like trying to distract them, it can be a good thing, so it's both
good and bad. It always depends on the situation.
Alex's reference to a battle scenario illuminates how context determines whether or not
attention is "a good thing." Based on my observation of him during One-on-one, it
appeared that he was able to use the time to both work on skills that needed strengthening
as well as converse and joke with his teacher. At times, he seemed to struggle to
maintain his focus, an observation supported by Alex's fidgeting with straws, pencils,
and other objects during the study session. In interviews, Alex articulated that fidgeting
was a way for him to maintain his focus when he felt that is was wavering.
While One-on-one class entailed collaboration between a student and a teacher,
Study Hall was a daily period where students could work independently on assignments
or projects of their choosing. Since Study Hall took place at the end of each day, Alex
typically used the time to work on homework so that he could "reduce" the amount that
he would have to actually do at home. However there were times, specifically when Alex
had finished his homework, that he engaged in other activities such as creative writing
work, perusing magazines, or joking around with classmates. In addition to One-on-one
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and Study Hall, students were sometimes given the chance during Gym class to choose
between a few different activities. Such was the case on the day I observed Alex during
Gym class, where he chose to work out in the weight room instead of watching a video.
During that period, Alex conversed freely with his teachers and the few classmates who
had also chosen weight-lifting over video-watching.
The variant ways in which Alex participated in classes supports the idea that how
he participated—quietly, dialogically, fidgety—was tied to contextual features of the
class. When structures and expectations allowed students the freedom to make choices
between options, it seems that he was wholly engaged, such as during Art class. He
became particularly fidgety and began to "multitask" (a notion discussed in this chapter)
when he was expected to sit still for long periods of time, especially when having to
listen to lectures. Thus, there was no single "way" that Alex participated in school, as
common narratives of AS often evoke (hence for instance generalized strategies for
behavior modification of students so labeled). In particular, such narratives often
position students labeled with AS as preferring highly routine structures, a notion that
Alex's participation did not demonstrate. In fact, the observation that his participation
seemed most effortlessly engaged during classes where structures were looser (and thus
more likely to present instances of ambiguity, such as changing expectations for students'
participation on a given day) suggests that Alex competently navigated classes that posed
the possibility for change and mobility.
In Between Classes
While particular features of classes prompted diverse manners of engagement,
Alex's participation outside of classes was likewise informed by features such as
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expectations, rules, and the ability to share his interests with others. Lunch hour was a
loosely structured period where students could relax and spend time with friends while
eating, though during the two times that I observed Alex during his lunch hour, I never
saw him eating. This observation, however, was levered against my knowledge of Alex's
eating habits during our interviews after school. There, he would plunge wholeheartedly
into a meal as we engaged in our discussion. His choice to spend the sanctioned school
lunch hour completing homework and then playing videogames instead of eating entailed
an element of risk, particularly in light of previous events. When I observed Alex during
his lunch hour in the cafeteria, he came close to having his videogame confiscated, a
consequence of ignoring the school headmaster's rule for videogame playing that Alex
had reckoned with twice before. On this particular day, the headmaster had walked into
the lunchroom and was making his way over to the area of the room where Alex and his
observers were sitting. Known as the main enforcer of the "no videogames allowed in
school" rule which was not typically adhered to by teachers on lunch duty, Alex quickly
took note of the headmaster's presence. He put his machine away and waited until the
administrator left the room before pulling it out and resuming his game. During our
interview later that afternoon, Alex explained:
Alex: Yeah, there's something with [headmaster]... either the memo [that states you
can have videogames during lunch] didn't make it to him, or he just doesn't like it, but
he has a weird policy. He sees a videogame, he takes it.
Carrie: He just takes it? He doesn't ask you to put it away?
Alex: One more strike for me and I'm never going to see it again.
Carrie: How many times has he taken it from you?
Alex: (Holds up two fingers). . .Those two times were like during class when no one's
doing anything. And they were last year. But he holds grudges, which is bad.
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While there were other instances where teachers reminded Alex to abide by the general
rule of (no) videogame-playing in school, he noted that overall, it was an "under
enforced" rule, an insight that aligned with some of my observations, particularly those
made in his Math class.
One day after lunch hour and during the latter half of the school year, I was struck
by a particular interaction between Alex and his peers. Early in the school year, I had
observed Alex to arrive to his classes fairly quietly, nearly always one of the first to
arrive, and seemingly organized with a binder and pencil in hand. I noticed little
interaction between Alex and his peers, and overall, his countenance was serious.
However on this particular day, Alex's gregarious engagement with his peers led me to
record the following in my field notes:
In between lunch and 6{ period (Art class), several students including Alex wait
outside ofthe classroom for their teacher to arrive. In this time, Alex banters with
a small group ofboys, some that I recognize from lunch period, others that I've
never seen before. He discusses his videogame, and I hear him say that he
"cheated" to win a particular game (or score a point). He pulled out afruit rollup and shared it with several other students— he ended up eating maybe halfofit
himself. Then, a studentfrom another classroom (Nate) approached Alex at one
point and shouted, "Alex! " and then held out his fist—Alex knockedfists with him
and then continued bantering with his classmates...
After school as I waited for him to join me for our interviews, I likewise noticed
(throughout our work, though markedly so toward the end) that Alex was spiritedly
engaged in conversations with his friends—many times, I felt like I was "pulling" him
away from these conversations in reminding him of our interview appointment. On one
occasion, one of Alex's friends (with whom he shared a computer in Art class) walked
with us, and the two continued their conversation in route to our interview location, an
eatery down the street.
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When I inquired about what I noted to be an apparent shift in his general way of
interacting, thinking that he was relieved to have midterms behind him, Alex noted that
"There's more to talk about and less distractions." In this conversation, he particularly
referred to a new videogame, Wii, that was about to come out:
Well, I'm hopefully getting the Wii system. It came out last April. It's Nintendo's new
you know, stationary game system. Nintendo didn't make very many stationary game
systems. Why? Because they were into the portable business. They made like the
Game Boy. . .and you know, the Game Q. Those things weren't very mobile. And now
they have the Wii. . .and you like move around to play the game.
Thus, it was clear that Alex's lightened spirits were tied to his interest in video games.
This particular interest was the focal point of many of my conversations with Alex as
well as highlighted in several of the stories shared in this chapter. Interestingly, it seems
that Alex's propensity to interact with his peers and teachers was concurrent with either
playing or discussing videogames or working one-on-one with another person (i.e. his
One-on-one teacher; his computer Art partner). This observation highlights how rather
than experiencing social isolation, Alex seemed to intentionally pursue social interaction
when he felt moved to do so— such as when he wanted to share with others his
excitement about a new development in the world of videogames (e.g. the Nintendo Wii).
While most of Alex's dialogic interaction with his peers revolved around the topic
of videogames, this was not his sole area of interest. It was, however, the area that
garnered the most admiration from his peers, as the most socially "acceptable" interest he
pursued. I move now to the next section, wherein I discuss the element of interest among
the prominent themes that aided Alex's meaningful school participation.
Alex's Stories and Representations of Life in School
As he shared about his life as a student, Alex touched on his past, his present, and
thoughts on his future, recurrently illuminating how several prominent features,
conceptualized here as themes, played a role in the way he conceived of himself as a
student and as a community member. Identifying through his stories and representations
the issues of a) interest, b) power and respect, c) humor, and d) fear, Alex illuminated
how each represented an integral force that enabled his meaningful engagement in
school.
While there are several instances of counter storytelling in Alex's narratives, his
stories perhaps do less to directly counter dominant narratives or "official" (e.g. DSM)
definitions of AS than they do to disrupt the idea (as perpetuated, for instance, through
research literature that presents therapeutic interventions being targeted at passive
recipients labeled with AS) that AS is a condition that one so labeled must overcome in
order to be "whole" (e.g. deficit-free) or to reach (social, academic) "success," popularly
defined (e.g. by nórmate standards). Articulating how being labeled with AS informed
the way he encountered life in school and interactions with his peers, Alex dually
acknowledged and accepted the characteristics that made him who he was, despite the
way that said characteristics were frequently interpreted by others as deficits. By
projecting a sense of acceptance of himself in light of his AS label, and in his resistance
to "overcome" (Linton, 1998) qualities associated with AS, Alex does indeed counter
"deficit" storytelling (Solórzano & Yosso, 2002).
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Interest: "It Could Be Incredibly Interesting. . .Don't Take This Literally but You Know
Not Everybody Likes Apple Pie"
In this section, I illuminate and discuss the role of interest in Alex's ability to
engage meaningfully in school. During the course of the study, Alex discussed the
importance of finding time each day to pursue his personal interests, which included cars,
videogames, building design, and war—even when he did not necessarily have many
opportunities to bridge these interests with the curricular agenda set forth by his teachers.
Spending time each day attending to his interests was particularly important in light of
the reality that school did not hold much intrinsic interest to Alex. When I specifically
posed a question about features of school that he found to be of interest to him, he
responded: "Interesting? Not much. It'd be great if there was something but there isn't."
While Alex conceptualized school as uninteresting in many ways, I did encounter
instances within his typical school day where his interests were seemingly quite engaged.
During interviews, Alex identified several such instances and noted how his ability to
find these contexts (e.g. Art class) enjoyable and meaningful was tied to the freedom he
felt to mine his interests in the course of an endeavor, a process that appeared to spur his
imaginative and creative capacities.
Here, I share data that highlight Alex's ability to engage in school in ways that
were expected of him (by teachers, class and school rules etc.) despite his frequently
stated disinterest in course topics and activities. In doing so, I illuminate how his personal
interests appeared to play several important roles in his ability to find meaning in school:
a) entertaining his interests allowed Alex to maintain a semblance of focus during what
he considered to be boring class discussions, lectures, and areas of study; b) referencing
his interests gave him the motivational force to find meaning in school-based activities
and goals; c) naming his interests allowed him to imagine topics that if given the choice
he would enjoy studying, even given a content area that he generally did not like (e.g.
reading); and finally, d) fusing his personal interests with class assignments fostered
Alex's creative and imaginative capacities.
Fazing out and multitasking. When I shared with Alex how I observed him to
appear focused in class, evident by his consistent sense of preparedness with materials,
and especially by the way he often successfully answered questions posed to him by
teachers, he responded:
Some of them are actually fumbles, believe it or not. They are not all accurate. Some
of them are just fumbles because I'm thinking about something else, you know, I was
thinking about how a rotary engine works in the middle of class today. And the
teacher called on me. . .1 don't know what a rotary engine is: I'd assume like the
pistons are arranged in a circle, I don't know. And the teacher called on me and asked,
"do you have anything to add?" and I'm like, "Yeah, why did she throw the candy off
the back of the train?" [reference to a film they were watching] (laughs)
As our conversation proceeded, Alex explained his ability to "multitask":
Alex: Most people get confused. . .but I can do complete different directions (indicates
that he's thinking of many things at once).
Carrie: Ok, so you can make your brain work in two different directions at once?
Alex: Yeah. Multitasking.
Carrie: You're good at multitasking.
Alex: Once I was writing something down, and playing videogames at the same time.
I lost, but that doesn't matter—because that was the beginning of playing video games
and answering a question in class. That was some long time ago, I was playing my
Game Boy, but I was like, "Oh no, oh no, that's not funny, how did you kill me with
that? Well, that's no fair" and everyone's looking at me like, "What?" Then I (said),
"You saw nothing.". . .1 might have lost the video game, but I got the test finished and
I aced it. No matter how evil of a person I was. . .
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Here, it appears that Alex may have improved his capacity to "multitask" beyond his
abilities to do so "at the beginning. . .some time ago." Having "aced" the test that he was
working on as he played videogames, it appears that Alex learned that engaging in two
activities at once was something that he could continue to do, and in fact improve upon
over time. I noticed during interviews that when he wandered off topic (or when it
appeared so) Alex was adept at either returning quickly to our conversation topic or
linking his (seemingly) tangential discussion to our conversation topic. One such
instance occurred during an interview where he "fazed out" in the midst of our dialogue
about what we were referring to as "reality based" math problems. Alex had just shared
that he did not like math problems that were based in reality, a judgment he made based
on class assignments that required him to engage in word problems about hypothetical
situations, such as a question that asked how long it might take a person to dig a ditch
given particular variables. During this interview, as I prefaced a question with "So I
noticed in Math class. . .," Alex interjected with an observation of his own:
You know what else I noticed? That cars today are really crappy. You look at them,
they have twenty, thirty miles to the gallon and have a hundred and eighty
horsepower. What, you double the horsepower [sic] and take away 4/5 of its
horsepower? Cars in the '70s, you know, they were around 500, 600 horsepower. And
today cars like have 1 00 horsepower with like twice or three times the fuel efficiency.
So I don't get it, I mean, you have the fuel crisis. . .you know, why don't we find better
fuel sources and make less CO and C02? Or find a way to recycle the C02?...We
can't keep depending on plants that were crushed 3 million years ago under pressure
(makes funny high-pitched sounds, to emulate plants being crushed).
Interestingly, his observations about the puzzling reality that cars today are at once less
fuel efficient and lower in horsepower than they were a few decades ago beckon
mathematical reasoning. Thus while Alex mused about a personal interest in cars, he
engaged in reality-based math as he calculated the difference in horsepower and fuel
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efficiency rates between modern and vintage cars. Although he veered from our specific
conversation about his Math class, Alex nonetheless contributed a piece of insight that
allowed me to understand him as a mathematical thinker. Importantly, this wandering
allowed him to provide a rich illustration of the way he referenced his interests to fortify
his mathematical reasoning skills; within the confines of a conversation strictly about his
Math class, there was an absence of this richness, as Alex clearly had begun to "faze
out."
"Fazing out," Alex shared, was often instigated by subject matter under study.
One discussion we had around his Literature class' reading of the book The Color Purple
illuminated how boredom and frustration led to his propensity to "faze out" during
lectures and activities around this novel:
When the book has butchered English language, like "I ain't done nothing wrong,"
that is hard to understand. A bunch of hillbillies saying, "I ain't done nothing
wrong"— who could understand that?. ..You know, sometimes it gets so boring you
faze out, and yeah, that's when you need other people to tell you what you missed, and
you're fazing.
He further pondered:
Who wants to read about racial prejudice? I mean, who really wants to read about
that? I mean, yeah, if you're like a college professor, you know, teaching about what it
was like back when, you know when African Americans and white people had two
different bathrooms. Who really wants to read about that stuff? I mean, wouldn't you
rather read about something relevant like what's going on now? You know, like in
Afghanistan, how you know, we are trying to overthrow the Taliban from power.
Responding to my suggestion that studying this particular story could in theory be
interesting, he said, "It could be incredibly interesting, but. . .don't take this literally but
you know not everybody likes apple pie. You know, not everyone likes apple pie... it
basically means everyone's different." Apparently, Alex did not care for "apple pie," his
figurative parallel to The Color Purple, and trying to convince him to eat "apple pie"
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when he did not like it in the first place seemed like a vain effort. It appears that central
features of the story, including characters' "butchered" speech and the topics of "racial
prejudice" and discrimination (which he conceptualized as part of the past and no longer
relevant to most people) deterred his interest and perhaps his ability to connect with the
text. Interestingly, Alex's sentiment that "it basically means everyone's different"
suggests that although he was personally bored by the story, he still understood its value
in the minds of others (e.g. college professors teaching about racial prejudice). In this
case, he happened to be one of those who did not like "apple pie," instead preferring
topics that addressed contemporary issues that simultaneously engaged his interests, such
as current events in Afghanistan. Indeed, Alex mentioned that given the opportunity, he
would "rather read a book about Charlie Wilson's war" (also known as the Soviet-
Afghan war) than The Color Purple. While illuminating the role of his interests and
relevance in his choice of curricular material, this preference evoked the idea that Alex
did have the capacity to enjoy reading, despite the fact that he noted at another point
during the study that in general, he disliked reading. He specifically found some books
intriguing, namely The Road and the novel that he was in the process of reading with his
One-on-one teacher, The Da Vinci Code.
Lunchtime, Art, and Study Hall. While he found the majority of classes
uninteresting, Alex found periods of time within his week to infuse his personal interests
into class assignments (Art and Study Hall) or simply spend time honing his skills in
chosen areas (lunch hour). During these periods, I often observed Alex to take on
qualities of active (i.e. Alex never reported, nor did I witness signs of, multitasking or
"fazing out" during these periods), sometimes dialogic participation typically not
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witnessed in his other classes. The structure of these periods departed from other classes,
often notably apparent in teachers giving students looser parameters in which to work
than in other classes. In addition, these periods also all seemed to inspire an element of
interaction with peers that, as the by-product of students' active engagement in their
projects and endeavors, seemed to be more naturally occurring than in other classes
where communication amongst students was expected, yet in the structure of assigned
small groups seemed to take on a more strained connotation.
On a typical day, Alex spent part of his lunch hour playing videogames, often
with friends watching over his shoulder or playing alongside him on their own machines.
Using this time to play videogames was important to Alex, particularly because playing
made him "feel better" about himself. In fact, he had specific ideas about why this was
the case, as illuminated in the following interview passage:
Alex: You can do things that in reality you would never be able to do in your greatest
of dreams. I mean none of us are ever going to do an extreme road rage, putting
people at the wall, and taking them down, and. . .No, we're never going to be able to
do that stuff for real. Unless we're psychotic and off our medication. But then it's a
different case, but for the average person who doesn't have any brain problems and
has a working conscience, yeah.
Carrie: So the average person with a working conscience. . .
Alex: Would never actually do any of these things.
Carrie:. . .So for you just getting to you know, virtually do this stuff, it makes you feel
better about yourself. Does it have something to do with being really good at it? Does
[sic] that how it makes you feel better?
Alex: No, it's challenging. If it's too easy or too short, it's no fun. And if it's too hard
it's no fun either.
Carrie: So it has to be just right.
Alex: It has to be long and it has to be challenging. That's the problem with "Call of
Duty," it's not that it's not hard, it's just not long enough, what you've got 12
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missions, that's it. And these missions aren't very big. I mean, you know, you have
multiple missions within that one mission, but. . .
Carrie: Wait, what is "Call of Duty" again?
Alex: "Call of Duty 4"? It uh, gives us a grim idea of the near future. The war in Iraq,
possibilities of nuclear warfare breaking out.
Carrie: So that game is too short?
Alex: It's too short, that's the problem.
Carrie: How long would it take you to play a round ofthat?
Alex: A day, a day maybe. . .If I can beat the game in one day, it's too short.
Carrie: What's an ideal amount of time?
Alex: A week. . . Well, not non-stop playing. But like if you can beat it in one sit-down,
it's too short.
Carrie: Typically how long do you play a game for, what period of time?
Alex: An hour maybe, until I get bored.
Lunch hour then, was an important facet of Alex's day that enabled him to contribute
some of the time needed to meet his ideal goal of pursuing challenging, week-long
games. While there were other times during the school day that Alex was able to play
videogames as well (such as during his Math class, discussed earlier), lunch hour was a
block of time that he could count on to consistently contribute about an hour or so of
game-playing, a process that allowed him to recharge himself after a morning of
continuous class work. In his words, playing curbed his tendency to get "fidgety" and
"aggressive."
The significance of Alex finding time each day to play videogames was
underscored continuously throughout the study. As he mentioned, the process allowed
him to virtually explore some of the things that interested him, albeit in a way that would
not put people in danger. His description of virtually experiencing "extreme road rage" is
an example of a situation that Alex found fascinating, but would not in his "greatest of
dreams" happen in reality.
While he spoke about his videogame-playing with enthusiasm and energetic
description, to watch him play told another story—Alex appeared quite serious and
especially focused during his playing sessions. On one occasion, I asked Alex about
some observations that I made during a particular school day. During one period of the
day, I had witnessed Alex playing videogames alone in an empty classroom during his
lunch hour. At that time, he was seemingly focused on his game, and he sat still quietly
and intently. Later in the day, I saw him in his Gym class, where he was lifting weights,
conversing with his teachers and classmates, and joking around. When I pointed out what
struck me as a contrasting level of enthusiasm as evidenced by the energy output he had
given in these different scenarios, Alex's response challenged my assumptions:
Carrie: Well, it seemed to me that when you were doing the weight lifting for the first
half of the period, your enthusiasm. . .
Alex: Was kind of low.
Carrie: No, I thought your energy seemed really low during lunch when I saw you in
there playing that game. But then when I saw you in Gym, your enthusiasm was way
up compared to what it was the period before.
Alex: Well actually it's quite the opposite. I love playing video games. I don't like
weight lifting.
Carrie: Ok, so maybe I don't mean enthusiasm, I mean energy level. You seemed...
Alex: Yeah, yeah, it doesn't take that much energy to move your thumbs around.
Here, Alex challenged my assumption that greater energy output (namely in the form of
interacting with others, laughing, and joking around, perhaps catalyzed by the active
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nature of lifting weights) was equivalent to a greater sense of enthusiasm— and thus
interest— for the activity at hand. Alex clarified this misjudgment by noting that while it
may have appeared that he was less enthusiastic about playing videogames, it simply was
an activity that required less energy output. This interaction served as a reminder that
judging about one's state of mind by observing outward behaviors alone can lead to
misleading conclusions. It further called into question an assumption that social
interaction in the form of conversing with others, joking, and laughing is necessarily an
indicator of one's interest in (or enthusiasm for) the activity at hand. Alex expressed
many times that social interaction, commonly defined, is neither amongst his strengths
nor a necessary component to the cultivation of his sense of well being and this scenario
seems to illustrate his perspective richly.
Art class was another arena wherein Alex seemed to fuse his interests with
course-based structures and requirements. Early in the study, Alex explicitly identified
Art as his favorite class because "I can do whatever I want— Sky City, work on death
machines, build oil wells, lots of stuff. Many things that you cannot do with wood and
metal." The opportunity to integrate some of his favorite subjects with art projects was
complemented by the use of computers. Alex articulated that he preferred engaging in
computer-based art over other forms such as "wood and metal," and paper and pencil,
because:
. . .I'm not good at carving. Usually the entire piece I'm trying to form chips off and I
lose everything. And, I can't draw for my life, the only thing I can do, I can draw little
stick figures (laughs), and give that guy a little hat, and (laughs), really basic.
One dream that Alex shared was to "make videogames" using computer programs. While
he did not get the opportunity to make videogames in his Art class, however, he often
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talked about one day learning to do so, and expressed how he conceived of making
videogames as "an art" because "you make people happy." Indeed, he found other ways
to cultivate a sense of happiness in his Art class; in particular, for months he worked on
his prized project called "Sky City" and although he was not, due to technical issues, able
to contribute this particular piece of work (which he dubbed his "piece de resistance") to
the study, he spoke elaborately about it. He discussed several features of the project,
including the different parts of the City: Cloud City (an elevator), Sky City, and
Suburbia. Alex mentioned his hopes for winning a prize in his class' art show for the
most original project (other categories included "best interior, best exterior, and most
plausible design"). Originally conceived by Alex as "just a giant elevator with a house
on top, and that was it," Sky City progressed to become a virtual city standing at 23,000
feet elevation, built using the program SketchUp. The city in its evolution at the time of
our last interview even had a police department, and Alex devised a way to ensure that
prisoners within Sky City could not escape:
Well, there is going down, but they can shut the elevator off when they are
transporting prisoners from the helicopter to the giant cell. Plus, what's really
interesting is that the person can't really go anywhere, I mean yes, they send them
down in the elevator, and [if] they decide "You know what, I'm going to try to
escape"—you really can't escape when you're in an elevator going down, because if
you cut the wire you're just going to fall to your death. If you try to climb up, it's
going to be futile; you're just going to stand still. . .
While Alex noted that building Sky City "could never be done, ever. No one could
survive at 30,000 feet of course," he nonetheless added that the idea was "still really
nice." When I inquired about the time he estimated he would need to finish the project, he
replied, "I never will. It's just going to keep getting taller and taller until I have
something huge."
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Art class seemed to be a place where Alex could creatively fuse his interests in
building design and construction with requirements set out by the teacher. Another class,
Study Hall, also provided opportunities for Alex to creatively engage in endeavors that
called forth his interests. In one example that Alex shared, he completed a creative
writing project that engaged his interest in the production of methamphetamines, which
he had learned about on a History channel program called "Illegal Drugs." During Study
Hall, his teacher had provided a brief writing prompt: "It was the perfect lift-off," and in
response, Alex conjured a story about a character that, with intentions of making
methamphetamines, experienced the consequences of allowing two explosive
substances—natural gas and fireworks—to mingle. Within the body of the text, Alex
integrated the prompt sentence, referring to the explosion's effect on the foundation of
the building.
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Figure 5: Alex's Methamphetamines Story
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Alex's participation in Art and Study Hall projects suggests that his ability to
wholeheartedly engage in school-based work, particularly marked by his lack of "fazing
out" and "multitasking" during these endeavors, depended on locating opportunities to
mine his range of interests. His stories and representations around the theme of interest
contribute original counter stories to dominant narratives on AS in that they highlight
how Alex a) employed a ToM; b) relevantly referenced his interests in the process of
honing academic skills, and c) engaged in school-based activities with imagination and
creativity.
Alex illustrated the ability to take the perspective of others, or to employ a ToM,
in a couple of instances. When describing his ability to "multitask," Alex shared how
while he entertained thoughts during boring classes about topics such as rotary engines,
he also maintained an appearance of being engaged in the activities of the class. This
attention to appearance was tied to his need to convince his teachers that he was indeed
paying attention, a thought process that required the ability to understand the importance
of others' perspectives. In another instance, during his discussion about The Color
Purple, and particularly in his discussion about how "not everyone likes apple pie," Alex
implicated that while he did not enjoy reading the novel, others indeed did find it
appealing. As he spoke of his perspective on the story, he constructed a metaphor
(around apple pie) that allowed him to account for the reality that his perspective was just
that—his, and that while he felt a certain way in regards to the book, he understood that
others did not necessarily share his views.
Next, Alex illuminated how referencing his interest in cars allowed him to engage
in a reality-based math problem, which was significant in light of his contention that he
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was a struggling math student ("my math gene is failing") and particularly so when it
came to reality-based problems. While thinking about the relationship between
horsepower and fuel efficiency, Alex engaged a math problem that was "relevant" to his
interests as well as to current events that were transpiring (i.e. the fuel crisis). As
discussed in previous chapters, common narratives on AS often frame the practice of
referencing interests as problematic, specifically in that it is thought to be an indicator of
the propensity to engage only in what one is interested in. While Alex proved many
times to steer our conversations to new places, he illustrated the capacity to forge
connections between what we were discussing and what he had seemingly tangentially
described. Such was the case with our discussion around reality-based math problems, an
area that his class had been studying. As he described his observation on the horsepower
and fuel efficiency of modern and vintage cars, Alex not only allowed me a glimpse of
the type of math problems that he found to be meaningful, but also demonstrated through
his description of a reality-based mathematical observation that he had remained ontopic. While his observation may have appeared to be off-topic (e.g. not directly tied to
his math class, which was one facet of what we were talking about), clearly his mind was
engaged in thinking about math problems with real-world implications.
Finally, many of the examples shared within the theme of interest provide
evidence of Alex's imaginative capacities. Paralleled by the virtual reality in which he
participated during his videogame-playing sessions, and perhaps fortified by them, fuel
for his imagination ranged from surmising how a rotary engine works to demarcating
intricate details of a made-up city (Sky City) to writing about the disastrous implications
of mixing dangerous materials (in his methamphetamines story). Alex illustrated the
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ability to tap into his imagination during times when his interest was not engaged, as
suggested in his description of his propensity to "multitask," as well as when his interests
were inherently engaged, such as during his Art class as he designed Sky City. While
finding the opportunity to integrate his interests with the expectations of a class or period
appears to have contributed to his ability to participate without the need to "multitask" or
the propensity to "faze out," it also appears that Alex was able to find meaning in courses
that did not inherently engage his interests. Specifically, he devised of ways to maintain
a sense of interest in the class, namely by entertaining concurrent trains of thought—a
process that, while meaningful in its capacity to provide him with interesting things to
think about despite the class' focus on boring topics, enabled the cultivation of a rich
imagination.
Thus, Alex's use of imagination was not tied to any specific set of
circumstances—instead, it appears to have been a stable component of his participation, a
tool that he employed regardless of whether or not it was specifically called upon in class
assignments and activities. As explored in the previous chapter, individuals classified
with AS are commonly thought to lack the ability to imagine (Elder et al., 2006); Alex,
however, provides an occasion to understand the quite significant role that imagination
played in his identification of meaningful school experiences. Further, his ability to
engage imaginatively in school did not seem to work against his capacity to find
"success" in terms of meeting academic goals and requirements: while Alex engaged his
imagination during a variety of school-based activities, he did not do so at the expense of
doing well on exams, completing homework, and so on. Likewise, his ability to
"multitask" suggests that he did not engage single-mindedly in his interests; indeed, he
attended to requirements for his class participation, as illustrated in his discussion of
being called on to answer a question regarding a film that the class was watching.
Alex's interests, and particularly videogames, were often at the center of his
discussions around a second theme: power and respect. In the next section, I highlight
and discuss data around this theme, with particular attention to Alex's thoughts on the
relationship between the two constructs.
Power and Respect: "You Don't Have to Have Respect to Be Powerful. And Vice Versa'"
Alex's thoughts on the issues of power and of respect were not easily
disentangled. In fact, he typically discussed them concurrently, yet iterated that the two
had distinct meanings. While Alex often described his wish for power as connected to
his competencies as a videogame-player, he also alluded to the need to gain a sense of
retribution for what he perceived to be his peers' poor treatment of him.
In one instance, Alex expressed how his disappointment with being the last
student chosen for teams led to his thoughts on retribution:
Alex: As I feared, I'm now picked last in sports.
Carrie: What do you mean?
Alex: Always. Because I'm the last fricking person on the wall.
Carrie: In Gym?
Alex: Yeah.
Carrie: Why do you think that is?
Alex: I don't know. You know sometimes the tables can turn. I don't know when, but
someday... Someday I'm gonna find one of them on the street as a hobo saying,
"Spare change?"
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As he contemplated how it felt to be the last one chosen, Alex imagined future
repercussions for his peers' actions, in a karmic sense. His reference to his peer's
imagined fate as "a hobo" contrasted his imagined fate as a non-impoverished person,
which seemed to allow him a modicum of hope that one day the "tables'" would turn to
position him in the seat of power.
In another instance, Alex talked about how he often found people to be "very
confusing." He shared how disillusioned he often felt with his peers, many of whom
often told him that he "sucked," a comment that prompted Alex to return the sentiment.
The following passage illuminates how Alex conceived of respect as something that is
reciprocal: if one does not show respect, they cannot expect to be granted respect in
return:
Carrie: So when people ask for help, you just walk away?
Alex: Hey, that's what they did to me.
Carrie: So you feel like you are reciprocating what they've given you?
Alex: It's the best way to get back. When people don't respect you, you don't have to
respect them. It's respect. If you're not respected, you don't have to respect them
back.
While Gym class did not provide a forum wherein Alex seemed to garner a sense of
respect, he specifically addressed how his videogame-playing skills served as a vehicle to
gain a sense of respect amongst his peers. During a conversation about the relationship
between power and respect, spurred by an observation made during his Math class, Alex
shared the following:
Carrie: So, in Math class you and... like five other students, were playing videogames
for about half the class period. . .some of the guys that you played the videogame with
in that class were people I hadn't seen you talk to that much before. So, I'm just
wondering what makes that class different in that respect? That you interact with
people that you typically don't. . .
Alex: To prove I'm better than them. When you can prove you're better than
someone, you get a lot more respect. It also means the less respect you have to show
for them.
Carrie: So you feel like you don't need to give respect in order to get respect?
Alex: No. No, quite the opposite. If you want to be respected, you have to show
respect. But you know you don't always have to show respect to get respect. Like if
you're better than someone. . .they have to respect you.
Carrie: What do you mean when you say "better than someone"?
Alex: You know, there are so many different categories: videogames...No one can
beat me at videogames. I play an hour and a half a day, and still no one can beat me.
Some people play for hours and hours a day, I play 90 minutes a day and nobody can
beat me.
Carrie: I saw, it looked like you were teaching people to play. They were coming to
you as like the expert of how to do this stuff. . .So that puts you in a position of what,
respect, is that the way you would categorize it? You're the one who has some things
to teach these people?
Alex: Yeah, because you don't have to teach it to them. It's not like they point a
weapon to your head and say, "teach me how to do this." No, they have nothing, you
can say, "Nope, sorry."
Carrie: Right, but I noticed that you were still... you were teaching people things.
Alex: Only a third of what I teach them is actually real. The other stuff I'm misleading
them to keep them at the bottom. Evil, isn't it? I don't want people getting better than
me.
Carrie: Ok, so you are not going to help them grow in that way. . .
Alex: I help them grow, but then I chop them down. And I let them grow and then
chop them down again. Then I let them grow a little more, then chop them. So you
know, they still grow, but at an extremely slow pace. Kind of like two steps forward,
and then one and a half steps back.
Carrie: . . . What makes you not want to give more—is it something about these people
personally?
Alex: No. It's a very broad term. I just want to be better than them. . .
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Carrie: Do you feel like you have kind of taken a leadership role in that class or in that
context with the videogames as it carries over into other situations with those same
kids?
Alex: It gives me power. . .It gives me more power in that class than overall, but you
still gain power from it. Being the person nobody can beat at a certain type of
videogame...
Carrie: Would you say that the words "power" and "respect" are the same in your
mind, or different?
Alex: Quite different. People can respect you but you're not powerful, and people can
hate you and despise your guts and you can have the most power in the world. You
don't have to have respect to be powerful. And vice versa.
Carrie: . . .in your case, you feel that you have both?
Alex: No- 1 have a little bit of each. . .All thanks to videogames. If it were the '70's
everyone would be picking on me saying I'm the worst. . .Because I'm not good at
anything else. I'm not a sports person, anymore.
Alex's history facing disrespect from his peers seems to have played a pivotal role
in the way that he perceived the relationship between power and respect. While he stated
on several occasions that respect was necessarily reciprocal in certain cases ("When
people don't respect you, you don't have to respect them"), he provided an exception to
this rule in his assertion that ". . .you don't always have to show respect to get respect.
Like if you're better than someone. . .they have to respect you." While he imagined how
the "tables can turn" perhaps as a strategy to negotiate hurtful encounters with his peers,
Alex did not rely solely on the fate of the future to land him in the seat of power. Indeed,
in maintaining his status as the best videogame player, he secured a position of power in
relation to his peers, and by virtue of the current popularity of videogames he garnered
their respect as well. Interestingly, Alex alluded to the idea that while his abilities earned
him respect from his peers, he was able to sidestep extending a sense of respect to them,
especially noting how he was under no obligation to teach them anything about his
strategies. Further, he provided insight into one way that he held onto his position of
power, specifically noting how in "teaching" his peers, he purposely set them forward
two steps "and then one and a half steps back."
Alex also spoke of power in terms of classes that he felt were successful in their
capacity to "go off without a distraction," which he felt were rare. In the following
excerpt, Alex identifies "dictator" qualities as crucial ingredients in a class's capacity to
"work":
Alex: You have to have a dictator 'cause nothing else ever works.
Carrie: . . . What do you mean?
Alex: A dictator, someone who rules with an iron fist.
Carrie: Do you think Mr. [Teacher A] is a dictator type?
Alex: No, but a lot of teachers are, and that's what keeps them in power.
Carrie: Over their students?
Alex: Machiavellianism. The end result outweighs the means.
Carrie: And you feel like a lot of your teachers use that principle?
Alex: No, just Mr. [Teacher A] and Mr. [Teacher B]. And those are the only two
classes that actually work.
Carrie: What do you mean "work"?
Alex: They go off without a distraction. Well, there are distractions but they are
usually taken care of really fast.
In his reference to "Machiavellianism" and ruling with an "iron fist," Alex conveyed that
teachers' competence, in the form of taking control of the class (attending to
"distractions" quickly), is a critical element in a class's capacity to "work." He likewise
highlighted to the role of power (i.e. in the form of dictatorship) in these teachers' ability
to keep their students under control. Citing that the "end result outweighs the means" by
which one arrives to that end, Alex alluded to the idea that these teachers do whatever is
necessary to keep a sense of power and control over their students. Interestingly, earlier
in the interview Alex referred to Teachers A and B as two of his "evilest" teachers, a
quality that he regarded with amusement, and not necessarily unfavorably. In fact, he
regarded Teacher A as one of his two favorite teachers of all time, but noted that this was
the case because he was also a teacher with "nice" qualities that weighed against those
that he considered "evil."
As suggested by his opinion that theirs were the only two classes that "work,"
Alex's respect for Teachers A and B recalls earlier sentiments around his relationship to
his peers in terms of teaching them videogame-playing strategies. In his role as a
"teacher," he too seems to have employed a measure of Machiavellianism, particularly
evident in his expression that he misled his peers "to keep them at the bottom," which he
noted was "Evil, isn't it?" Thus, he adopted a method that both ensured his control over
his peers' knowledge and secured his position of power as the best videogame player in
school.
Alex's insights around power and respect underscore how in the process of
integrating his personal circumstances, characteristics, history, and strengths, he affirms
many capacities. Therein lays the force of his narratives to provide counter stories to
dominant stories on AS, which invariably frame students so labeled in terms of their
assumed deficits and areas of incompetency. Alex's stories around power and respect
specifically interrupt the notion that individuals with AS are dependent on the
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intervention of others in several ways: a) they instate his active role in reshaping his
social landscape, in light of his history of being disrespected (what might be interpreted
in the AS literature as "bullying") and understood as socially deficient; b) they illuminate
how he mined his interest in videogames (which simultaneously enveloped other interests
such as war and weaponry) to cultivate a sense of competence, and the admiration of
some peers; and c) they highlight how he identified strategies of teachers that contributed
to classes that "work" and illustrated his respect for their style of teaching in his
employment of similar strategies when "teaching" his peers.
While many narratives on AS focus on the need for students so labeled to employ
specific, prescribed strategies (i.e. social stories, direct social skills training) to manage
what are considered common problems of bullying and social isolation, Alex regarded his
interests (in this case videogame playing) as a source of strength that fortified his ability
to mitigate overwhelmingly negative social encounters that he had become accustomed to
dealing with in school. In doing so, he was able to focus on something that made him
feel good about himself while concurrently building the skills that led to a position of
power in relation to his peers. He did not seem concerned with whether or not his peers
liked him per se, but was intent on maintaining his seat of power which he noted begat "a
little bit of their respect as well.
Indeed, tendencies to intently focus on specific topics are often interpreted as
"obsessive" (i.e. Carrington & Graham, 2001) in AS literature. Alex's stories underscore
how intent and purposeful focus can both be rooted in thoughtful consideration and
reflective of what he finds meaningful on a variety of levels. For instance, while Alex
tapped into videogame playing as a source of confidence that led to qualitatively different
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social interactions with his peers, he also levered the considerable significance of his
newfound power and respect in light of his past experiences that made him feel like a
social outcast. For him, keeping his peers "at the bottom" was a pivotal step in a
complex process that ensured his status as "better" than them in a particular (and popular)
arena. The process of pursuing his interest in videogames and maintaining his status as
"better" implicated multiple facets of Alex's experience as a student: his history, his
present understanding of himself as a competent being, and his hopes for his future (i.e.
as glimpsed in his comment about one day having the "tables turn"). Thus, Alex's intense
focus on videogames appears to have been a far cry from a mere "obsession"; rather, he
adeptly identified this interest as a tool that would affirm his competency, in his mind as
well as in the minds of others.
Finally, Alex's ideas around teachers with "dictator" and "Machiavellianism"
qualities highlight how he appears to have identified people in his own life as examples
from whom he could relate and learn. That is, in identifying how particular teacher
qualities led to classes that "worked," it is possible that he appropriated their principles to
guide his interactions with his peers, namely those who admired his videogame-playing
prowess. This action underscores the value in students locating real-life, authentic
situations, as opposed to solely referencing scripted scenarios and/or engaging in roleplaying (though these may be quite helpful resources), in the processes of navigating
social terrain and learning about ways to interact with others.
Articulating the roles of power and respect in his and his teachers' ability to
maintain a sense of control in particular situations, Alex affirmed the value of these
features in his ability to find meaning in school. Likewise, as explored in the next
section, he identified the quality of humor as an important facet of his experiences as a
student. Sharing data around this theme, I illuminate how through the expression and
enjoyment of humor, Alex's stories disrupt the common notion that individuals labeled
with AS do not appreciate this quality.
Humor: "I Know It Was Sheer Terror and It Was Scary but from My Point of View It
Was Funny"
Carrie: Ok. What about Math?
Alex: You know, Math ain't that good.
Carrie: Who's your teacher?
Alex: Lefler.
Carrie: I don't know Lefler.
Alex: He's the one in Math.
Carrie: (laughs). That's what you said.
Alex: That really didn't help, did it?
During the above referenced interview, I asked Alex if he had suggestions for
classes that I might next observe. Responding to his reply that he did not have any
particular class in mind, I brought up the possibility of observing him in his Math class,
since I had not yet done so. Our exchange struck me as inherently funny in a sort of
incidental way. Alex's response "That really didn't help, did it?" after using repetitious
information to convey who his Math teacher was illustrates one facet of his sense of
humor. Alex's response evidenced his immediate recognition that his logic had been
circular, and moreover illuminated his ability to find the humor in his logistical mishap.
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Antics that prompted peers' reactions. Alex's capacity to deftly identify the
humor in situations was not limited to these incidental instances that transpired during
our conversations. During the study as he shared stories of his life as a student, his humor
surfaced in a variety of other forms. In most cases, Alex's stories involving humor
centered on interactions with others, and many of these stories recall his appreciation for
the quality of "evil" discussed earlier in this chapter. He often interpreted others'
reactions to his actions and antics (which frequently involved elements of shock or
"terror") as humorous. In one instance, he shared how he found humor in his classmates'
reaction to him getting sick, once again demonstrating the capacity to laugh at himself:
Alex: Well, a few days ago, I was running and I overheated so bad, I vomited in the
classroom. I was just like burning up and then all of a sudden, vomit comes flying out
of my mouth (laughing).
Carrie: Oh no!
Alex: Oh my gosh. And still, people are afraid I'm going to vomit all over them or
something. . .It was hilarious (laughs). I finally got the privacy I wanted! People finally
frickin' left me alone. . .But then people blamed me for liking school. I just, my only
reason for not leaving was. . .because I don't want to have to do all that work
tomorrow.
Here, Alex demonstrated the capacity to make light of a situation that rendered him
vulnerable to his peers' ostracizing. His ability to locate something beneficial during a
time that could have caused him considerable distress suggests that his value of privacy
and his wish to avoid having to make up extra work outweighed his need to be accepted
by his peers. While he showed a keen awareness of his peers' thoughts ("people are
afraid I'm going to vomit all over them") as a result of this incident, he did not express
distress over this reality, and instead focused on an opportunity that surfaced as a result of
this unpredictable event. Furthermore, Alex found the idea of "vomit. . .flying out of my
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mouth" funny and the reaction of his peers "hilarious." Other stories illustrate how Alex
enjoyed antics that prompted his peers' reactions (commonly manifested as shock or
irritation). At one point, Alex shared how he had teasingly taken the jacket from a
classmate, a young woman that he had described as puzzling to him at several points
during the research. When she requested her jacket back, Alex explained: "It was funny,
I said, Tm so warm; I don't want to take it off. But I'm so warm. Leave me alone, I
don't want to take it off." The young woman responded by ripping the coat off of him, a
move that Alex noted "was not funny."
Alex referenced another incident several times during the research that took place
at his home involving two of his friends. Prompted by a discussion about violence and
self-defense, Alex initially shared this particular incident during our first interview:
Alex: . . .when you're just angry and you put someone in the hospital for no reason, I
don't say that's ok. When you're defending yourself, that's ok. When you're just
ripping someone's face off because you feel like it, no that's not ok at all.
Carrie: So your understanding of what's tolerable with violence is when it's only in
the name of self defense, when your own life is being threatened. Is that correct?
Alex: Yeah. With the same or more force.
Carrie: I've never seen you be a violent person—you've always just pretended.
Alex: Yes, pretended. You know what though? Some people just take it the wrong
way.
Carrie: What do you mean?
Alex: Like Jason. Jesus Christ, he spread rumors about me. That I like attacked him
with a knife or something.
Carrie: A knife? Do you even have a knife?
Alex: No, I don't carry a knife, but it was like at my house. And I was pissed, he was
with James who's still a friend of mine, and they left, and [I thought] "I'll get them for
this," so I sneak into the kitchen and take a bread knife and all I was going to do was
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just flail my arms around and just start screaming when they came in. And basically
what happened is that they came in and they were like, "Alex, where are you?" and I
just started screaming and flailing my arms around. Oh my god, that was a funny look
on their face (laughs a bit). I know it was sheer terror and it was scary but from my
point of view it was funny. . James didn't take it the wrong way—he knew I was
kidding. But Jason thought I was crazy.
Carrie: . . .Did this incident happen when you were just becoming friends with him,
when he didn't know you so well, or?
Alex: No, that was like a year after I met both of them.
In a later interview, Alex shared some of the back story to this incident, noting:
I just did that because they left and they took 20 dollars with them, my 20 dollars.
That's why I did it. Because I was angry. And they didn't leave any of their stuff
behind so I couldn't take any of those things, so what better way to get back than to
scare the crap out of them? Maybe I could have thought of something better, with less
side effects.
While Alex found amusement in teasing his friends, he also considered the consequences
of this form of engaging with his peers, especially evident in his comment that the young
woman ripping the jacket off of him was "not funny" as well as in his allusion to the
"side effects" of scaring James and Jason in the knife incident. Nonetheless, he
recollected these incidents with laughter at the memory of his peers' reactions, perhaps
finding a degree of satisfaction in gaining retribution for the way that he had been treated
by these individuals in the past. While he often described his thoughts on the young
woman as puzzling and even fear-inducing, I witnessed her teasing Alex on several
occasions, seemingly in a playful way, both during school hours and after. Likewise, the
two young men that Alex scared in the knife incident had taken his money, which
prompted his decision to use scare tactics to "get back" at them.
Teacher A. In midst of a discussion around teachers that Alex enjoyed working
with, he identified a particular teacher (Teacher A, referred to earlier) who impressed
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Alex with a humorous tactic that he employed several times during the school year. This
tactic never ceased to catch Alex off-guard. The following excerpt comes from an
interview regarding Teacher A' s class, wherein I had just observed Alex. In that class,
the teacher told the students that they were to complete a substantial assignment over the
upcoming holiday break, only to confess right before dismissal that he was teasing.
Alex: I actually thought he was going to assign us homework over the break.
Carrie: I did too. I believed him completely.
Alex: And then he says, "I'm just kidding." (laughs). Those are some of the times
when it really gets your blood pressure up, and he just goes, "I'm just kidding." Fm
like, "Damn it."
Carrie: He builds it, builds it, builds it, and then. . .
Alex: And it's like, damn it, how did he get there again?
Carrie: He knows how to get you guys...
Alex: ...He's always like that. Except sometimes he doesn't say "I'm just
kidding.". ..Once, he did the evilest thing in the world... He gave us this big, terrible,
massive three page assignment—and then the next day he said, "I'm just kidding with
you." Damn you! That's what I was thinking in my mind, I'm thinking "Damn it."
Carrie: Were people upset?
Alex: Everyone was upset because everyone did it.
Carrie: So what did he do with the work, did he read it?
Alex: No, he just said, "Put it in your binder and leave it there for the rest of the year."
That was pure evil.
Charactering Teacher A' s antics as "pure evil," Alex laughed as he shared this story (and
as he repeated other instances of the same tactic in other interviews as well), indicating
his amusement with this teacher's ability to convince students of his seriousness when in
fact he was not serious at all. Indeed, Alex conveyed a sense of respect for this teacher,
and as previously mentioned, he regarded him as one of the best teachers he had ever had.
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School work. Alex's appreciation for humor was evident in his discussion of
school work that he contributed to the study. Specifically, Alex shared a piece of work
that he created in Art class called "The Twins" project. For this project, he photographed
his face and then manipulated the photo using Photoshop to show two separate faces: one
comprised solely of the right side of his face and the other comprised solely of the left
side of his face. Then with his partner, he created a "Wanted" sign with each of the faces
represented, though each version demanded a different dollar reward amount.
Figure 6: Alex's "Wanted" Project Completed in Computer Art Class
¦¦
i
i
Alex found that using technology to modify his own face to the point where each
new face bore a mere resemblance to him to be an intriguing creative process, and once
again he demonstrated the ability to laugh at himself. This assignment represented
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another level of humor to Alex, who found it particularly funny that he deemed one face
worthy of only two dollars while the other a hundred thousand dollars. His rationale for
the value discrepancy was that he did not like the smaller face (which he referred to as a
"pinhead"), and that he found the larger face preferable.
Alex's multiple representations of humor provide occasion to mobilize beyond the
limiting discourse that positions individuals labeled with AS as unable to appreciate
humor. Clearly, as evidenced in the stories shared in this section, Alex engaged humor as
a critical element that appeared to enable a variety of capacities. First, as highlighted in
the vignettes around a logistical mishap, vomiting in class, and in The Twins project, the
use of humor cultivated his ability to find enjoyment in light of himself, his own mishaps
and/or vulnerabilities. Second, the stories about Alex taking his classmate's jacket and
about swinging a knife in front of his friends demonstrate how humor enabled him to
express emotions (i.e. playfulness, anger) to others. Third, in his discussion about
Teacher A, Alex identified how the quality of humor enhanced his appreciation for a
particular teacher and teaching style, particularly by virtue of identifying with a specific
brand of humor ("evil"). Finally, humor appears to have enriched the process of making
and sharing school-based work, as suggested in Alex's contribution and discussion of
"The Twins" project.
Humor is a quality that made its mark on nearly every conversation Alex and I
engaged in. While it was implicated in a variety of ways and a range of topics, so too
was the quality of fear a consistent thread in Alex's narratives around school experiences.
In discussing this final theme, I portray data that reflects Alex's thoughts, ideas, and
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relationship to fear, underscoring the multiple meanings this quality implied for his
engagement in school.
Fear: "...Facing Your Fear... Either Makes [Youl Not Afraid of What [You] Were Afraid
of Anymore, Or It Completely Scars [You] for Life..."
Alex addressed the element of fear recursively throughout the research, in terms
of past experiences as well as current issues that he contended with. At times, he spoke
about fear directly, such as when he articulated his thoughts on the power of fear in one's
ability to either overcome or learn to live with it. He observed: "You know, going up
against, facing your fear. . .never has both effects—it only has one: it either makes them
not afraid of what they were afraid of anymore, or it completely scars them for life..."
When recalling his earliest memories of school and naming specific individuals that
provoked fear, Alex directly reflected on the significant role that fear played in his life as
a student. At other times, he alluded to the way that fear manifested in his life on an
ongoing basis, such as in his description of common classroom-based scenarios. Whether
overtly addressed or referred to indirectly, Alex's insights on fear suggest that it played a
complex role in his life as a student, evident in his thoughts on facing, learning from, and
avoiding fear. Considered collectively, his stories around fear affirm his ability to
integrate past experiences to inform ongoing understandings of complicated issues (i.e.
life on the streets) and to protect himself from what he perceived to be potential harm. In
addition, Alex's insights contribute to an understanding of the ways that he handled a
range of fears on an ongoing basis—and highlight how he found ways to navigate
common fear-inducing situations.
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The early years. Alex noted how his first elementary school "didn't teach me
anything. It taught me how to be street smart, but that's not going to help me in my
academic life, that's only going to help me on the streets." During that period, Alex had
"a really deformed idea of what the street was actually like" and also contended with
peers who treated him poorly and whom he described as "jerks." Each of these realities
contributed to the fear that endured for several years. When reflecting on those years,
Alex described how he had integrated lessons from the past to inform his current
perceptions about school:
Alex: It's gotten a lot better. I'm still street smart, and using the information I learned
from [School], but my image of the street is no longer deformed. I know what the
street is like, it's not hell. It's not that bad.
Carrie: What do you mean when you say "the streets"?
Alex: Of [City]. Because it was downtown in lower [City]. I mean, that place was hell.
It was crowded with con artists, all kinds of crazy things. I don't know if it still is, but
it was flooded with con artists, drug dealers, all kinds of things. . .
Carrie: . . .How did your perception of it change?
Alex: Well, you know, no one's coming to beat me up, no one's going to kill me in
my sleep anymore.
Carrie: Did you used to fear those kind of things?
Alex: I feared sleeping because I believed someone was going to come and kill me in
the night. You know, it's kind of like the monster in the closet, except I couldn't have
a monster in the closet because I didn't have a closet.
Carrie: (Laughs).
Alex: So, I just had some person coming in and killing me. . .but. . .you couldn't get in
because there was only one door and I lived on the tenth floor of the apartment
complex, so you really couldn't get in without anyone noticing. So yeah, the fear just
kind of deteriorated over time.
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Carrie: Did the fear deteriorate after you left the public school?
Alex: Yes. It existed well into third grade, and then it deteriorated.
Alex's understanding of the "streets" was informed in part by the negative experiences he
had with his classmates and peers in that school and neighborhood. During this
interview, Alex shared how he levered his conception of the "street" as dangerous against
knowledge that he had acquired since those early years. Specifically, he referenced how
finally feeling safe in his home at night contributed to his ability to conceive of the streets
as safer than he initially had, a conclusion he arrived at after night upon night of not
experiencing anyone coming in to harm him. His reflections illustrate how he
successfully integrated past and present information that resulted in a conception of the
street that no longer induced that original level of fear: "I know what the street is like, it's
not hell. It's not that bad." In addition to gaining a sense of confidence through
consistency (e.g. night after night of nothing harmful or scary occurring) it also seems
that his attention to logic (e.g. how living on the tenth floor of the apartment building
deterred invaders) played a role in alleviating the fear he felt regarding others coming in
to "kill" him in his sleep.
Present years. As a high school student, the basis of Alex's fears contrasted those
of his earlier years. Overall, his high school-based fears were less centered on physical
safety than those he discussed in recollecting his elementary years. Instead, most of the
fears he represented as significant to his life as a high school student seemed to be more
socially-centered. At one point, Alex expressed how an element of uncertainty
heightened his sense of fear regarding a classmate. In a reference to the young woman
that he had taken a jacket from in another instance (Annika), Alex expressed how his
limited knowledge about her formed the basis of his fear:
Annika, I don't know what her deal is. I don't know, I don't know. I don't know her,
I don't want anything to do with her. I sleep in fear at night because I'm afraid she's
going to come in with a weed whacker and tear my face off.
Here, Alex's stated fear that Annika might come in the night to "tear off' his face is on
one level reminiscent of his sentiment regarding his early school experiences. However,
at the same time, Alex did not claim that Annika was mean-spirited, per se, as he had
clearly identified his elementary peers as "jerks." Rather, his fear of Annika seems to
have been based on the complexity that she represented, the puzzlement that she posed to
him, as evident in his assertion that "I don't know what her deal is." While his fear
associated with the "jerks" in elementary school appears to have been firmly rooted in his
experiences of being mistreated by them, his fear of Annika was seemingly rooted in his
uncertainty of how to interpret her.
Another situation wherein Alex encountered fear is represented in the following
excerpt in his explanation of a common classroom-based scenario:
Alex: Sometimes I just kind of faze out. And then the teacher calls on me and says,
"Do you have anything to add?" No, I don't. Those are scary moments.
Carrie: When you get called on?
Alex: Uh-huh. . .1 faze out and then all of a sudden, "Alex, do you have anything to
add?"
Carrie: And what goes through your head when that kind ofthing happens?
Alex: Oh, crap. . .Damn, I should have been paying attention. Like everything on the
board doesn't make any sense, what's going on here?
Here, it seems clear that Alex's wavering attention was responsible for the "scary
moments" he experienced when called on to answer a question. While fazing out was
something that Alex identified as a consequence of his disinterest in certain classes, it
also appears to have contributed to a sense of anxiety that struck him in-the-moment. In
this instance, Alex's fear seems to have been fleeting in nature, relevant only in the
moment that he was called upon to contribute a response. Though such moments proved
to be uncomfortable for Alex, he nonetheless seems to have anticipated and thus grown
familiar with them, as he made no indication of working toward alleviating the possibility
of future encounters with this type of fear.
Alex's stated appreciation of the quality that he referred to as "evilness" in
teachers spoke to an additional, albeit indirect, way that he negotiated fear in his life.
Discussing how "evil" teachers are those who are not afraid to "pick on" students, he
shared how his ability to avoid being "pinned down"—and thus "picked on"—was a skill
that enabled his avoidance of a situation that posed the possibility of being
uncomfortable. Fear seems to have played a role in his determination to maintain a low-
profile, and by extension, to preserve a sense of security in an environment that posed a
level of threat. Indeed, he addressed the danger of showing emotional expression, and
noted that "facial emotions take too much energy," asserting: "You could be the most
panicked, afraid person ever, but you can't show it. 'Cause that shows flaws. Flaws are
easy to exploit."
Alex's stories around fear highlight the ways that he competently employed logic,
learned from his experiences, and formulated strategies that aided his navigation of
fearful elements that he contended with as a student. In exposing his vulnerabilities
around fear, Alex contributes narratives that underscore the myriad ways he negotiated
the physical and social landscapes of school with a label of AS. While his narratives do
248
not necessarily constitute stories of "overcoming" fears, they represent locallyconstructed, relevant, and thus authentic responses to a variety of situations that Alex
considered threatening to his well-being.
In the following section, I discuss how various facets of experience played roles
in Alex's formation of an adolescent identity.
Alex's Adolescent Identity: A Summative Discussion Engaging Three Lenses
The diverse ways in which Alex participated in school contribute to a larger
narrative about his identity as an adolescent labeled with AS. Here, I reference data
previously presented in this chapter and some data that has not yet been presented to
discuss Alex's identity construction through three lenses: peer/friend, student, and
AS/ADD/disability.
Peer/Friend
Alex articulated that the social organization of his school had a "top and a
bottom" without any middle, asserting that ". . .some people are more well-liked than
others. And then everyone else is just like, 'Who is that again, over there?'" He
considered himself to be one at the "bottom of the barrel," who people did not easily
remember. While he acknowledged that he had friends in school, Alex conceptualized
these friendships as "alliances" which he noted, "develop over time. They are slower than
friendships. And they are a lot harder to break." He shared how the value of these
alliances included the fact that they helped him "get through school and get home with all
pieces in tact" and that the particular individuals he named as his friends/alliances "have
no way to attack me." While these friends/alliances shared Alex's interest in
249
videogames, they did not pose a threat to his status as the best player in the school. When
speaking of his friends/alliances, Alex noted how "they're good for some things, but
sometimes you just have to do. . .things on your own."
Troublesome early school experiences with peers and with teachers seem to have
taught Alex the value of ensuring his own safety first and foremost. And while early
experiences may have contributed to what I observed to be a sense of disillusionment
with his peers as a high school student, he singled out a specific person who he
considered a friend during the elementary years. This friend, who he called a "mentor,"
was "a lot older" than Alex and emerged during what he described as a chaotic time in
his life:
I had one friend, his name was Mario. And yeah, he was kind of like my
mentor. . .having him was really helpful. 'Cause for one, it kept me from fearing the
other kids that had hard problems. Some of them lived in places, you know some of
them were drug dealers, some of them were drug addicts, you know, there were
problems. And the teachers weren't very good either. What, a kid drew a little smiley
face on the board as a joke, the teacher just went ballistic. It was like a tomahawk
cruise missile hit her, and she just went loco. She was like, "Who drew this?" "What
the hell is the point of this?" "Why did anyone draw this?" and you know she's like, "I
want you to write down if you did it, or if you think someone did it." I'm just like, I
don't know if she's lost it, if she's on something or something. I'm just like,
someone's got issues. 'Cause she just went loco.
Even given Mario's friendship, Alex contended that those years were not ".. .something I
ever want to remember." While he acknowledged the qualitative difference between his
life as a younger student and the present time asserting that "It's gotten a lot better," Alex
still seemed to regard most of his peers with caution. While he asserted that he was not
"very social" in school, he explained a reason behind this reality: ". . .in the first year
people were telling me, 'You're a retard, go learn something that's useful' and that. So I
did. I learned about weaponology. Weapon history. And now people accuse me of being
250
psychopathic." The sentiment he received from his peers after following their advice to
go and "learn something that's useful" seems to have strengthened the negative
associations he had formed around peers in his earlier years and thus perhaps contributed
to his need to maintain a distance from them. Indeed, his rationale for choosing his
friends/alliances on the basis of their inability to "attack" him supports this observation.
Alex's assertion that several of his particularly outspoken classmates "talk just for the
hell of it" as opposed to contributing relevant and valuable information to class
discussions further suggests his disillusionment with them. Maintaining distance from his
peers perhaps spoke to the mistrust he felt of them, and to the danger of getting himself
into situations that incited his anger, hostility, or sense of being threatened. Indeed, he
spoke to a facet of videogame playing that ensured his safe distance from having to
negotiate the emotional responses of others, saying: "You know what's awesome? In
video games, when you beat someone you can say they suck and you don't have to worry
about how they feel."
As he identified himself as someone at the "bottom" of his school's social
hierarchy, Alex stated several times throughout the research that he was "evil," referring
to himself as the "mafia character." Interestingly, I never noticed Alex posing a threat,
physical or otherwise, to his peers in any of the many contexts in which I observed him.
He did however share two instances in which he engaged in physical violence during his
school career (one in elementary school, and one in high school), although he contended
that such instances were not "typical" of him, and indeed justified one of the two as an
act of self defense. Alex conceived of the incident where he flailed a knife in front of his
251
friends as a joke, and while it did not entail physical violence, it was an act that seems to
have provoked fear in at least one of the two friends.
Alex's description of the way he taught his peers about videogame strategies (in
order to keep them at the bottom) exposed a facet of the way that he conceptualized the
meaning of "evil," as did his references to some of his teachers as "evil," by virtue of
their sense of humor that including "picking on" students in various forms. References to
his interest in war supported Alex's contention that others perceived him to be "evil," a
notion that is touched upon in the next section in terms of Alex's student identity.
Student
Alex: . . .Midterms are coming up and I better go study 'em.
Carrie: Ok, we're almost done.
Alex: That wasn't a phrase that meant I have to leave.
Carrie: Oh, I thought it was.
Alex: It wasn't. If it was, I would stand up and be like "Well, I'd better get going."
The interview passage reflected here offers a glimpse into fundamental qualities
with which Alex approached his role as a student: focus, determination, and directness.
Since a portion of the research took place in the midst of Alex's midterm examination
period, I was able to gain a sense of the seriousness with which he regarded and prepared
for his exams. My response to Alex's assertion that he had "better go study 'em" was
based on his past discussions of strategies he used to ensure his readiness for the exams.
This process, he described, entailed nightly reviews of his material and a well-planned
"agenda" that he used to maintain his studying regimen. In speaking about his
organizational system, he instated the importance of allocating his "free" time for
studying purposes: "I built an agenda. These meetings really mess up my agenda because
they like take away from the time I could use for studying." Noting how our interviews
or "meetings" interfered with his schedule, Alex conveyed a discernable sense of focus
on his goals.
His organizational scheme paid off in the sense that he did well on his exams, as
he noted: "I did pretty well. Mostly A's and B's." Alex's ability to construct strategies
(organizational or otherwise) that worked for him was evident in other stories he told as
well. While he acknowledged that certain strategies his teachers shared with him were
helpful, he also relied on his own mental devices for solving problems. One instance of a
strategy that he used was taught to him by his Literature teacher. It was the practice of
taking notes in the margins of text pages, and was a process that Alex likened, in its
simplicity, to a particular gun design. He said:
You know, I can't say I like it, but I can definitely say it works. You read, your write
down the most important thing on the page, you keep reading. . .it's like a
Kalashnikov, an AK. An AK47. It's so basic that it works. .. .it's so basic, it's so
effective.
Alex's preference for simplicity, such as "basic" reading tools, was further affirmed in a
statement he made in regards to his Math class, in which he felt he had taken a recent yet
"permanent decline" (which he likened to "our oil production"). His views on the
complexity of particular types of math, namely Geometry, which his class was studying
at the time, gave way to an insight that reflected Alex's wish for having had earlier
experience with this type of math: "They should expose kindergarteners to this really
complex stuffand then they'd understand it when they're older." Alex's affinity for
strategies and approaches to learning that did not engender unnecessary complexity was
253
further illustrated in his response to a question about features of classes that did not seem
to work for him:
Teachers who make things take much longer than they should... Mr. Lefler's rocket
problem. . .Uh, there's these rocket problems, this goes up in this direction, this fast,
and gravity pulls it back down. And so he makes things really more complex than they
really are. . .That's when I faze it out 'cause I have my own strategy that works. Much
better.
Here, it appears that "fazing out" served the purpose of leading Alex from feeling
disengaged to attending to a strategy that worked "much better" for him. His attention to
strategies that worked for him (and discerning those that did not) suggest that Alex was
confident in his ability to flexibly choose approaches that felt relevant and appropriate to
his learning needs and preferences.
Although Alex portrayed himself to be a student with focus, intent, and a sense of
personal organization, his reference to himself as "evil" was especially meaningful when
understood from his perspective that being understood as such was "better than being Mr.
Goody-goody two shoes." He based the "evil" facet of his identity partially on the fact
that he was a "weapons fanatic" and noted that "everyone knows I'm a war monger." In
fact the very interest, war, that led to his identification as "evil" was also regarded by
Alex as a source of strength that implicated his success in History class. When he
contributed a History exam to the study, the following dialogue transpired:
Alex: My first ever exam from History, I got a C+ because I did not study. And I had
an A+ on that and I studied.
Carrie: . . .would you say History is your. . .
Alex: It's what I excel in...
Carrie: Ok. What do you attribute that to, why do you think that is the case?
Alex: My uh, earlier schools.
254
Carrie: What do you mean?
Alex: Well I, well, you know I've been tormented like "Oh, you don't know anything,
go learn something." So I did. I went and learned history, specifically wartime history.
War, war, war, war, war. I love war.
Figure 7: Pages from Alex's History Exam
Medieval & Renaissance History
Group 9
Midterm Examination
January 2008
NAME
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MATCHING I:
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A. majority of medieval population
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B. monks who interacted with the public
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C. associated with King Arthur legend
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F. Haley's comet appears
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G. dressed in the robes of the Umbrian peasant
Chivalry
_ Edward
f\ Peasants
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H. Viking King who converted to Christianity
I. responsible for founding the great monasteries
J. dues paid to the church
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L. Biblical King of Judea
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1066
M. later known as Franciscans
60. Who became king upon the death of King Aethelred?
A. William of Normandy
S. Alfred the Great
C. Edward the Confessor
D. none of the above
61. The Treaty of Wedmore was signed by:
A. Edward the Confessor & William of Normandy
B. Emma of Normandy & Canute
©. Alfred the Great & King Guthrum
D. King Aethelred & Tostig, Earl of Northumbria
62. Who converted to Christianity, with Alfred the Great as
A. King Guthrum
B. Edward the Confessor
C. King Hardrada
D. Harold Godwisson
63. What did Alfred the Great accomplish during his reign?
A. built well-defended settlements around England
B. helped translate many books into Anglo-Saxon
C. codified the Anglo-Saxon law
D all of the above
64. Who was the patron of the Anglo-Saxon chronicles?
A. King Aethelred
B. Edward the Confessor
C. Hardecanute
H. Alfred the Great
65. What were the Anglo-Saxon chronicles?
A. the story of the Battle of Hastings
B. a census taken after the Norman conquests
<J. a patriotic history of England
D a treaty signed by king Guthrum
256
Short Answer:
1. Into what two periods are the Middle Ages traditionally divided?
1.
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.
2.
2. List the three classes of Medieval Society:
1.
2.
3. List the three vows taken by Medieval monks.
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4. List three responsibilities of the lay brothers within the Medieval monastic
system.
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2.
While Alex noted how History was the subject that he excelled in, he did not identify this
class among his favorites. Instead, when discussing History class, he focused on the
257
qualities of his teacher who he described as "pure evil" devoid of any "nice" qualities to
balance them. Nonetheless, the final comment of the interview excerpt convincingly
illustrates how Alex's social and educational history and interests in weapons and war
were implicated in his current success as a History student.
AS/ADD/Disability
While Alex represented himself several times throughout the research as having
problems socializing, he often equated this characteristic as part and parcel of having a
label of AS. At one point he noted that "People say I talk about weapons too much. Well,
what do you expect? I have Asperger Syndrome." Our conversation around this comment
continued as follows:
Carrie: What does that mean?
Alex: Fm not good at working with people.
Carrie: But what does being interested in weapons have to do with Asperger
Syndrome?
Alex: It doesn't. People say I'm strange; but just because I don't talk to people, I don't
work well with people, you know, that's basically it.
Carrie: Well what do you think about that? I mean, you gave me their perspective, that
they think you are "weird"...
Alex: Well, they complain that I don't work, that I'm not a team player. And I'm not;
Fm willing to admit, Fm not a team player, at all. But that's just how I am.
Carrie: That's just how you are. So, are there any instances where you do feel inclined
to be a team player or feel more comfortable with the people you are working with?
Alex: No, none that I know of.
Carrie: Even if you are working with friends?
Alex: Yeah, Fm still not a good team player. Once in a War Hammer 40,000 game I
thought I could win on my own so I turned on the guy who was helping me, oh, that
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was a big mistake. Literally, we were fighting together and I decided I could win on
my own.
Here, it appears that the AS label provided Alex with a sense ofjustification for why he
did not feel inclined to "socialize" or be a "team player." Interestingly, he did not
express any wish to change the way he was, despite others' perspectives of him as
"strange" (erroneously referred to by me as "weird" in the above passage). Instead, he
seems to have acknowledged the label of AS as a way to explain personal characteristics
that apparently set him apart from his peers. Alex's assertion that "I'm willing to admit,
I'm not a team player, at all. But that's just how I am" attests to the strength of his
conviction to acknowledge and accept who he is. As suggested in several instances
throughout this chapter, he experienced disheartenment at his peers' disapproval of him,
but at the same time, he consistently represented how he approved of himself and the way
that he experienced the world, and seemed to express a sense of exasperation at his peers'
adverse responses to him.
Alex also noted how he had tried to appease his peers' wishes—such is the case
when he noted how he "go learn something that's useful." His choice of topics to pursue,
weaponology, was of course not to his peers' liking, and thus spurred their continued
jeering. Nonetheless, his experiences did not seem to deter his acceptance of himself or
his pursuit of knowledge about topics of his liking. Further, he seems to have reconciled
with the fact that he did not necessarily wish to forefront the cultivation of friendships,
noting how even with his friends, he was not inclined to be a team player. His stance
then, stands to contrast AS narratives that focus on the importance of overcoming
qualities associated with an AS label.
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As an additional disability lens through which he experienced the world, Alex
talked about his ADD label as responsible for the way he struggled to "pay attention" in
class. He remarked that as a result of ADD, he felt there were always a lot of
"distractions," and noted how there was "always something better to pay attention to.
Whether it's the bird smacking into a window or some really ugly car." Though he
acknowledged his capacity to focus during class, he qualified that he could not do so "for
very long." Here again, Alex conceptualized a disability label as something that would
enable a better understanding of why he was the way he was. Though he recognized the
consequences for his ability to engage in school as a result of characteristics associated
with these classifications, he seemed to take them in stride, formulating strategies for
negotiating the demands of his classes with the realities of how he experienced the world.
Indeed, earlier references to "multitasking" support this observation.
Alex's participation and representations of himself as an adolescent labeled with
AS iterate the apparent importance he places on employing his classification for purposes
of promoting self-understanding. He does not indicate efforts to "overcome" the
characteristics that have led to his classification, though he has extended efforts to reach
out to his peers, to mitigate their contentions that he is a "strange" person. Responding to
his peers' disapproval even in light of his apparent endeavors to meet them halfway,
Alex forged his own path, and in acceptance of the qualities that make him who he is,
seemed to become disheartened by his peers' apparent expectations that he change his
interests and behaviors for their benefit.
In the process of learning how to navigate the social landscape of school, Alex
turned his attention to videogames, and while he dedicated about 90 minutes per day to
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playing, he encountered a source of respite, revitalization, confidence, and strength. The
importance of maintaining his status as an excellent videogame player was tied to Alex's
contention that being the best at something provided the promise of a direct path to
power. Attaining a level of power appears to have been an important step in Alex's
efforts to be understood as competent, a particularly significant reality in light of
repetitive past experiences of being ridiculed and socially rejected by his peers.
Identifying an interest that held value by virtue of its popularity in contemporary youth
culture enabled Alex's ability to represent himself as competent in a way that his peers
could easily interpret. As his skills and reputation beckoned a degree of respect from a
subset of his peers, it appears that Alex integrated into his identity a perception of himself
as competent, a recognition that was strengthened by the knowledge that others perceived
him as such too, "all thanks to videogames."
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VI-- VICTOR
"Whenever he puts mayo for frosting on a cake. . .it's past its expiration date." On
the first day I observed Victor in his school for this study, he contributed this descriptive
sentence to a Writing class discussion on sentence starters. At that time, Victor was
beginning his third year in his school and his first as a high school student. He was
fifteen years old. Victor approached most of his classes with buoyant enthusiasm,
especially evident in classes that invited his creative expression. The opening quotation
represents the playfulness with which he so often engaged learning and again,
particularly in those that beckoned his imaginative capacities. His apparent ability to
participate in classes with ease (e.g. he volunteered responses more readily than most
other students) gave way to the impression that he was comfortable in his environment.
While he wore his dark hair cut short, his choice of attire also conveyed a sense of
relaxed informality: he carried a black backpack at all times and dressed in solid colored
t-shirts, sweat shorts or pants and sneakers.
During my first round of observations, Victor walked me from class to class and
upon arrival, introduced me to his teachers and other faculty with gusto. While Victor's
personality factored into his eagerness to converse with his teachers, his ability to do so
also appeared to be aided by the accessible nature of the school's faculty. Although upon
first impression, the school felt to be a labyrinth of staircases and densely packed floors
of classrooms, I noticed how several personnel availed themselves to students in efforts
to provide them with guidance and counsel. The presence of adult support in the school
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was consistently observable and felt—it seemed that each time I rounded a corner I
passed a different faculty member. During the particular school year in which the data
collection for this study took place (2007-2008), Victor was part of a small cluster of
students who shared classes made up of both eighth and ninth graders. According to
Victor's mother, his placement in a combined class as opposed to a class comprised
solely of ninth graders was determined based on both his academic "level" as well as his
perceived emotional maturity. School authorities concurred that emotionally Victor more
closely resembled a middle school student than a high school student. As a result, he fell
into a unique category of students in "transition," a construct with which the school was
experimenting for the first time that year.
Victor lived with his parents and older brother a few miles away from his school,
and he relied on a school bus to transport him each way every day. His parents were both
employed and his brother was in his final year of high school. Victor was close to his
family, and he shared stories about life at home nearly as often as he shared stories about
life in school. He often spoke of looking forward to holiday breaks with his extended
family, relaxing at home watching television, and hanging out with his brother. Further,
he spoke about vacations his family had taken together, namely a recent trip to Italy
where he reported it had been "great' to learn about his "heritage." There, he reunited
with cousins, aunts, and uncles with whom he had not visited in several years.
In addition to keeping close familial ties, Victor had a best friend, Charlie, who he
had known since early elementary school. Charlie attended a different school in the city,
but the two still got together during summer and other breaks. Over the summer, Victor
and his mother had gone to spend some time at Charlie's vacation house in another state.
When they were together, Victor and Charlie enjoyed watching movies, eating food from
McDonald's ("Mickey D's"), and going to the local water park. An expressive person,
Victor especially enjoyed reenacting scenes from favorite movies and television
programs such as Talladega Nights and The Honeymooners. He had a propensity to
imitate different voices of characters and had a few friends in his school that often joined
him in reenacting specific scenes.
In addition to watching and reenacting television and movie scenes, Victor
enjoyed listening to music and singing, engaging in physical activities (such as team
sports played in Gym class), and pursuing his artistic interests, especially drawing. He
often talked about how much he looked forward to making it through a school day, and
he especially liked Wednesdays when students were dismissed early. Victor often talked
about endeavoring to do his "best" in school, which meant that he apply focus and effort
in his class work before turning his attention to his drawing (which, he noted, was "what I
do best"). In many of Victor's classes, it appeared that his teachers regarded his habit of
drawing to be an acceptable way for him to spend his time after completing the day's
work. That is, I never noticed teachers asking him to stop drawing in the instances that I
observed him doing so.
Culling from observation field notes and some of Victor's interview transcripts, I
move now to sharing data around his participation in school, attending to the verbal and
nonverbal features of his engagement. I discuss the overt and multifaceted expression
with which Victor engaged in school, which supports the idea that he has many abilities
and competencies, including the ability to imagine, engage flexibly, and with emotional
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expression. Further, his engagement evidences his ability to relevantly relate to situations
and to other people.
Victor's Participation: "[By Wednesday], I Start to Think about How the Week's Going
by so Fast. . .That's What Gets Me Excited"
Often regarding school as something that he just wanted to "get over with," Victor
shared his perspective on the school week: "[By Wednesday], I start to think about how
the week's going by so fast.. .That's what gets me excited." While Victor asserted this
idea several times throughout the study, I did not glimpse evidence of the school-induced
dread that the sentiment seemed to insinuate. Rather, I often observed what looked to be
wholehearted, spirited engagement in class and lunch activities. Victor's participation
manifested in several ways, including frequent volunteering of information or examples
from his own work, calling out to the teacher for help on spelling or math problems,
drawing pictures after completing his class work, and reenacting movie scenes with
friends. He rarely sat still. Instead, Victor seemed to be in constant movement which
was notably evident in the way he snapped his fingers to what seemed to be a beat
running through his head, often while singing under his breath, carried out what looked to
be sword fights with his pencils, or made broad sweeping motions with his hands and
arms, as if he was dusting off the surface of the table. In most of his classes, Victor sat
with a table partner at various spots in the classrooms, wherein it was common to see
tables (that accommodated two students each) arranged in rows on both sides of the
room. Generally, there were around twelve students per class, and Victor shared many of
his classes with the same cohort of peers. In fact, he often shared a table with one
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particular student and good friend, Anthony, whom he had known for a number of years
by virtue of having attended elementary school with him.
In Classes
While many of the classes I observed in Victor's school (when observing Alex)
took a lecture-style format wherein students were expected to take notes and generally
play a passive role, Victor's classes instead seemed structured in ways that fostered
opportunities for students to process information verbally. That is, his teachers often
invited students' verbal contributions to the lesson or activity. Additionally, class time
was sometimes used to review a previous night's homework or exams that students had
taken and received back graded. During an observation in his Science class, Victor and
his classmates used part of the period to work on a self-assessment of their skills in a
variety of areas relevant to that class, including the ability to take constructive criticism.
For the latter half of the period, the teacher led students in a review of concepts they were
studying, such as velocity and acceleration, in preparation for an upcoming exam. In all
of his academic classes, Victor's hand went up several times within any given period.
With his materials in front of him, he consistently appeared to be organized and ready to
plunge into his work. His readiness to contribute responses to teachers' questions and
offer examples from his own work suggests that his sense of organization worked in his
favor.
Victor's participation often supported the idea that he had an active imagination.
An example of this is the quotation that opens up this chapter ("Whenever he puts mayo
for frosting on a cake. . .it's past its expiration date"). In the process of constructing a
sentence to illustrate that he understood how to use sentence starters, Victor conjured an
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image of a cake that he thought was less than appetizing. The sentence also implied his
sense of humor, which is evident in the layering of audacities. First, Victor established
that mayonnaise constituted the cake's frosting, an arguably unconventional choice, and
then adding insult to injury, he qualified that the mayonnaise had gone bad.
In addition to engaging in his work with imagination, Victor also evidenced the
ability to remain on topic during class discussions. Contributions that Victor made
during his Literature class illustrated the relevancy of his response to his teacher who, in
the midst of a discussion about the novel The Whipping Boy, asked the class a question
about why one of the main characters felt happy upon hearing another person crying.
Victor raised his hand promptly and replied "Because he is mischievous, he makes fun of
people." In reference to the same book, the teacher asked the class a specific question
regarding a major event in the story: the death of a character's father. In response to the
teacher's question about how a reader might know that the father was dead, Victor's
comment reflected his previous referencing of the text: "... it says 'pa, rest your bones'."
His comment spurred a dialogue about how the phrase "rest your bones" was another way
of saying "rest in peace."
In addition to participating in class activities, Victor connected with individuals in
his classes in other ways. During the same visit to his Literature class referenced above, I
jotted down the following observation:
Toward the end ofthe period Victor gets upfrom his seat to throw away apiece
ofpaper. On his way back, he gives his classmate who is sitting at the teacher 's
desk (Nate) a high-five, and they share a laugh/joke and Victor gives him friendly
little "punch " on the arm.
Interacting spontaneously with a classmate, Victor provided an occasion to specifically
call into question the notion that individuals labeled with AS are "socially stiff' (Myles &
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Simpson, 2002, p. 133). Likewise, his participation in class activities sometimes spurred
conversations amongst his classmates. For instance, in his Writing class, Victor shared
with the class a creative writing project written from the perspective of himself as a 99-
year-old man. Detailing some of the poignant moments of his life in retrospect, Victor
mentioned being bullied in his youth. Though the fact that he had made up the details of
the story had been established earlier, several students expressed concern thinking that he
had truly been bullied. In response to what seemed like his peers' concerted effort to
understand the nature of his "bullying" incident, Victor reminded them that this story was
not based on facts.
Victor also spoke about and portrayed the importance of teamwork in his life as a
student. His enjoyment of collaborating with others, namely with his frequent table
partner Anthony, was evident in his assertion that he and Anthony "tend to be like sort of
brothers. . .We are like the perfect pair." Anthony and Victor also shared a computer in
their Art class. In that class, they engaged in several projects together, many which
entailed the use of the computer program Photo Booth. In one assignment, the two took
pictures of one another and then applied a function called "Comic Book" to the photos,
which resulted in a comic-sketch version of their images.
Gym was another class that entailed teamwork. Victor's participation in Gym
was marked by issuing frequent high-fives to his teacher when their team scored a point
in volleyball, verbally encouraging his teammates, and an apparent sense ofjoy (i.e. he
clapped his hands and danced around in place as he waited for the ball to go into play) to
be moving around after having attended back-to-back academic classes.
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While he frequently iterated the importance of teamwork, Victor also stated the
value of engaging in independent work. During his Study Hall class at the end of the day,
students were expected to employ the time to do homework, use the computer, or
socialize with one another. Victor deemed this one of his favorite classes (along with
Science and Gym) and used the time to prioritize finishing any homework he had
remaining, though he also socialized with his peers. In this particular class, Victor
appeared to work with focus, diligence, and attention to getting help from his teacher
(particularly in terms of his math homework, since the Study Hall teacher also happened
to be a math teacher) when he needed it.
In Between Classes
During lunch hour, Victor slalomed between eating the meal he had brought from
home, talking with friends who sat with him, which often took the form of reenacting
film or television scenes, greeting friends with an audible and cheerful "hello!" when
they entered the room (which doubled as the school's gymnasium), and in the absence of
a friend to talk with, clapping and waving his hands in the air or talking in low volume.
His engagement in between classes in the hallways and after school was quieter. When
walking from class to class, Victor was focused and efficient—he seemed to take direct
paths and usually did not slow down to interact with his peers. At times however he did
engage with others along the way, namely in the beginning of the year when he often
spotted a teacher that he wanted to introduce me to. After school, Victor typically put on
his headphones while waiting for the bus in the front of the school. He noted that once on
the school bus, he kept the headphones on until he arrived home. Indeed, during the
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many days that he traveled on the train with me in route from his school to a common
interview spot, my apartment, Victor spent the ride listening to music or a news program.
A typical school day engendered a variety of manners of engagement wherein
Victor's capacities were highlighted. As evidenced in his contributions to discussions
about The Whipping Boy, he expressed the capacity to respond with relevance to class
discussions; his construction of creative sentences was illustrative of his capacity to
imagine, while the capacity to express himself creatively was evidenced in the many
instances of scene reenactments (and additionally, in his creative writing work). The
capacity to engage socially was suggested in his frequent contributions to class
discussions, lunchtime activities, as well as his spontaneous interaction with Nate.
Importantly, Victor's participation also highlighted his ability to flexibly move
from one type of participation to another. Qualities such as overt and spirited
participation in class activities, quiet, focused traversing from class to class, and
zigzagging from one activity to another during lunch (some which entailed interaction
with others, some that were solitary) represent the sense of flexibility with which he
approached different elements of his day. While he reported to enjoy certain routines,
such as listening to music on his headphones on his daily bus ride home, Victor appears
to have adeptly negotiated an array of diverse participation structures.
Victor thus participated in ways that at times seemed to support popular notions
about students with AS (i.e. that students so labeled prefer routines; that they prefer to be
alone) and at other times seemed to counter popular notions (i.e. he flexibly navigated the
diverse expectations and structures encountered in a given day; he appreciated the
company of and interaction with others). These representations complicate what it means
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to navigate school with an AS label, particularly in the sense that Victor's engagement
seemed to waver between seemingly diverse values such as being alone at times and with
his peers at other times.
In the following section, I reference data from all three sources to discuss and
analyze issues that Victor identified as meaningful to his experiences as a high school
student. In doing so, I expand on many of the ideas touched upon in the current section.
Victor's Stories and Representations of Life in School
In the course of the research, Victor discussed a variety of topics, recursively
attending to several features that he found contributory to his meaningful engagement in
school. His stories centered on the following significant elements, conceptualized here as
themes, that informed his schooling experiences: a) balance and variation; b) creativity
and imagination; c) struggle; and d) entertainment. Each theme illuminates a different
facet of Victor's experience as a student with a classification of AS, and each played a
role in his ability to articulate a sense of identity that integrated several features such as
others' ideas about his participation, expectations of his school and of particular classes,
and his natural propensities: his preferences and the issues he wished to avoid. In a
holistic sense, those areas that Victor seemed to avoid in conversation (e.g. discussing
particular struggles he was engaging) or that he did not acknowledge (e.g. he never
directly discussed his label of AS) bore as much significance as those that he readily
engaged (e.g. his love of art and learning about artists), and thus each represents a feature
of his experiential knowledge (Solórzano & Yosso, 2002).
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Balance and Variation: "One Half. My Mind Is Busy, The Other, It Parties"
Threaded throughout Victor's stories about life as a student were frequent
references to the ways that he straddled two seemingly distinct endeavors: completing
academic requirements and finding the time to pursue his interests in drawing and
pastimes that signified "free" time from the rigors of structured coursework. His
discussions thus invariably conjured images of a balance: on one side, there were the
requisite activities that he negotiated and completed as an expected part of being a
student, and on the other were the activities that he conceptualized as a respite, or
"freedom" from assignments. The latter side of the balance contained activities such as
drawing and interacting with his peers, while the former contained class activities and
homework. In the midst of discussing what he enjoyed about a typical school day, Victor
shared his basic philosophy that if "I get my work done, I get to do whatever I want." He
further revealed how he conceptualized the difference between schoolwork and his
favorite pastime, which was drawing:
Carrie: How does doing schoolwork compare to drawing?
Victor: Schoolwork, my daily stuff. Drawing, my free time.
Carrie: How does it compare in terms of enjoyment?
Victor: It compares like this: I have a pencil and I use it most of the time, so it's kind
of separate. One half, my mind is busy, the other, it parties. It has a mind of its own.
Carrie: Ok, in terms of things that you like about your school day, how does doing the
work compare to doing the drawing. . .do you like one better than the other?
Victor: Actually, I like doing drawing more, because I just do my studies all day and
that's not really healthy for me.
Carrie: Why?
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Victor: 'Cause we have no recess, we work most of the day, and we barely have any
time for freedom.
Noting how a single instrument—the pencil— played a pivotal role in positioning him to
both meet requisite expectations for his participation as a student (getting work done) and
to attend to the other "half of his mind which "parties" via drawing, Victor illuminated
one way that he worked to strike a balance between the apparent tediousness of doing
"studies all day" and a sense of "freedom" that he noted was lacking.
At one point during the study, Victor described his propensity to vacillate
between completing his school work and drawing illustrations as indicative of being "half
obedient, half wild." This descriptor reflects Victor's determination to negotiate the
demands of school work while finding time to attend to activities that reflected his
interests (such as drawing, watching YouTube, and playing team sports). While typical
school days were constituted of a variety of activities, Victor negotiated them with
flexibility, applying diverse participatory styles in the process. Significantly, my
observations and interpretations of Victor's insights (as evidenced, for instance, by the
descriptive ways in which he shared about a variety of classes) revealed how his
engagement was consistently marked by a sense of vitality and spiritedness, regardless of
the activity he was pursuing. Accordingly, Victor shared how one teacher always told
him, "Victor, you bring the party to life."
Independence and collaboration. Victor discussed his appreciation for both
independent and collective endeavors. He noted how ". . .when I work independently, I
just do what I do by myself. But when I work with a friend. . .1 take some of his
suggestions and I help with him some of the times." In particular, he noted how classes
such as Gym, Literature, and Writing enabled his ability to collaborate in "teamwork" in
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the course of class activities. He namely liked working with Anthony, whom he shared
each of the three classes, and when I asked him if there were other students with whom
he engaged in teamwork he noted, "I just choose Anthony." Collaboration between the
pair was supported by the fact that they shared a table in most of their classes. When we
shifted to a discussion about classes that engaged him on an independent level, Victor
named his Math class as exemplary. In the following interview excerpt, he explains how
he approached independent work in this class:
Victor: Well, some of the questions I know because of the details. It says like adding
and subtracting and multiplication and division. We are dividing decimals, so I work a
bit by myself; I'm like one big calculator, who's half right.
Carrie: What do you mean by that, half right?
Victor: Well, sometimes I get 2 or 3 questions wrong, so I go back and check, so my
teacher lets me go back and check it.
In his Math class, Victor's strategy for working independently entailed checking in with
himself ("I go back and check") in light of his teacher's permission to do so ("my teacher
lets me. . .") in the absence of a partner. Interestingly, Math was a class that Victor did
not share with Anthony, and when I inquired about whether or not Anthony's presence or
absence in a class factored into his propensity to engage collaboratively or independently,
Victor noted, "Well when he's there, we work as a team."
"Freedom" from structured seatwork. Victor cited the continuous stream of work
that characterized his classes as antithetical to encountering freedom. In apparent
response to an absence of a period of recess and little free time in general, he noted how
drawing allowed him to access a modicum of freedom. Victor noted how the three
classes that he deemed to be his favorites, Science, Gym, and Study Hall, all enabled him
and his classmates to "have fun," he illuminated how they provided an antidote to the
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typical structure of the majority of his classes. All three of these classes represented
moments in his day where Victor could encounter "freedom" from continuous seatwork.
In Science, he often engaged in hands-on experiments, and explained about one such
project involving the study of a pendulum:
I seem to recall [working] with the pendulum. Not like that slashing thing, like with a
small tiny metal wheel, like a ball, and we tied a string around it. And me and
Anthony's figuration was this: if it's smaller, it goes faster, so it turns it for ten
seconds. Going like 1-2-3-4-5-6-7-8-9-10. And we would write how many swings it
just did.
Indeed, Victor stated his appreciation for hands-on projects, which was particularly
evident when I asked him if he enjoyed this learning modality and he exclaimed, "Man,
you don't' know the half of it." For Victor, the process of studying the pendulum
"Wasn't too difficult. . .All you have to do is just swing it. Make it then swing it."
Gym provided another opportunity for Victor to engage physically, namely in
team sports, and to "groove" to music. While he shared that Gym was one of his favorite
classes because he got to "play games" such as volleyball, he also noted another highlight
of this period, saying:
. . .sometimes we have Gym down in the basement and the teachers play music on their
iPods for us. Just to get us into that groove of the song in the gym. You know what
I'm saying, like "Eye of the Tiger"?
Likewise, Study Hall represented a time of the day when Victor's expectations for
participation deviated from the typical structure of most of his classes. He expressed how
he used his time during Study Hall:
Well, Study Hall lets us do our homework before we get home basically but also it lets
us have some free time there, like going on the internet for YouTube. So long as the
pictures are appropriate, we can watch them.
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Interestingly, periods of the day that presented space for him to engage in ways that
invited his physical participation or the liberty to participate in pastimes that held his
interest (i.e. watching videos) seem to have enabled Victor's ability to locate a sense of
freedom that he clearly longed for.
Home and school. Victor's descriptions of habits that he engaged at home, such
as showering after "a long day" of school, watching television, and then joining his
family for dinner provided another glimpse into the way that balance and variation played
a role in his ability to find meaning in school. Indeed, he once made a comment that
putting on his headphones on the school bus at the end of the day was one way for him to
". . .forget I even had that day." Further, Victor's expression of relief at the arrival of
each Wednesday and its significance as a half-way marker to the weekend seems to have
indicated how he identified home as a comfortable and familiar respite that allowed him
to escape the rigors that he contended with on a daily basis in school. In one interview, he
spoke about an upcoming family event in which he had a specific role to carry out. His
parents were renewing their marital vows, and he would be reading a passage during the
ceremony. Victor anticipated with excitement the opportunity to miss a day of school
due to his involvement in the ceremony. Taken alone, Victor's sentiments about home
might seem to indicate that he wished to avoid school; however, when considered as a
part of a larger narrative wherein he articulated an appreciation for a range of school and
home-based activities representing diverse participation structures and expectations, they
provide nuance to his perspective.
Victor's stories illustrate not only the element of balance that seems to inform his
approach to meeting the demands of his daily life as a student, but also his appreciation
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for variety in the course of a typical day and week. In tackling the various
responsibilities and seizing the moments of freedom with what seemed to be equal vigor,
Victor expressed his appreciation for activities that engaged diverse facets of his being.
Indeed, he aligned his role as a student with that of adults, who go to work each day:
Well, it's like uh, how parents do. Uh, they go to work, they do the work, they come
right home. That's just the same with us I think. I think we're mini-adults. We work
like all of them, except uh, well, uh, we have to do all the stuff that they did back in
their day.
Conceptualizing his role as a student as entailing an element of responsibility (work) and
an element of respite (home), Victor again evoked the idea of balance, encountered by
virtue of attending to diverse aspects of his life. In his conceptualization, he seems to
have considered home and school in tandem, a complementary relationship that aided his
meaningful and spirited participation in school.
Victor's stories around balance and variation speak to two common narratives
around AS and schooling: a) they counter the notion that students labeled with AS are
inflexible and rigid and complicate the idea that they prefer routine and b) they counter
the idea that individuals with AS are socially deficient. While Victor attested to enjoying
many of the creature comforts of home, as manifest in the routines he took part in each
day, his stated frustration with the monotony of structured coursework with little reprieve
(i.e. for "recess") suggests that he longed for a daily rhythm that integrated participatory
styles that invited hands-on, collaborative engagement. This was particularly notable in
his description of his three favorite classes. Each of these classes—Study Hall, Science,
and Gym— represented opportunities for movement, spontaneity, working with others,
and "fun." The seeming fluidity with which these three classes operated presented a
diversion to the majority of Victor's academic courses, wherein students were expected
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to sit in seats for the duration of the class period, and where the procedure of daily
activities did not change much on a weekly basis.
His particular insights around collaborative and independent work further suggest
that Victor engaged in different participatory structures with flexibility, while expressing
an eagerness for variety. In light of majority narratives on AS that position students so
labeled as preferring to be alone, they importantly underscore the value that he placed on
working as a team. Although he named a specific person, Anthony, that he liked
collaborating with, Victor nonetheless appreciated the ability to work with another person
when possible (e.g. whenever Anthony was in a class with him). His three favorite
classes represented a sense of openness to collaboration and interaction with others,
evident in his discussions about his enjoyment of Science experiments, watching
YouTube with his classmates in Study Hall, and playing team-based "games" in Gym
class. Each of these examples provides a glimpse at Victor's ability to socially interact
with others.
Like balance and variation, Victor identified creativity as a feature that bore
significant meaning to his participation in school (as well as out of school). The many
ways in which he engaged creatively also evidence Victor's active imagination. In the
following section, I discuss and analyze data around this theme, particularly attending to
the ways that his insights counter common narratives on AS that position individuals so
labeled as lacking the ability to imagine and create. In addition, I also highlight how
Victor's reference to the internal mindset of others suggests his capacity to attribute a
ToM.
278
Creativity and Imagination: "Well. . .It's I Think The Greatest Essay I've Ever Made up.
It's Uh. Possibly The Coolest Thing Tve Probably Done"
The ability to engage in school with creativity and imagination was a feature that I
frequently witnessed in Victor, as well as something that he talked about as an important
facet of his identity as a student. He articulated an understanding of creativity and
imagination across a variety of topics, and these features appeared in seemingly every act
of participation that Victor engaged in, and notably so in his Art, Writing, and One-onone classes. In identifying himself as a creative person, Victor also referenced the
perspective of other creative individuals and in doing so, revealed the ability to utilize a
ToM. In addition to complicating the notion that individuals labeled with AS lack a ToM,
Victor's stories around creativity and imagination also counter the idea that individuals so
labeled are deficient in their ability to engage imaginatively (as asserted, for instance, in
Harbinson & Alexander, 2009).
Transformer illustration. Victor spoke many times about his penchant for
drawing during down times of certain academic classes. As discussed earlier, this
practice enabled his ability to seize a moment of "freedom" within the tight academic
structure of his day. During a discussion about work that he identified as meaningful to
him, Victor contributed a particular drawing which was characteristic of those he often
drew in classes: it featured characters who were in motion, a quality that he denoted with
"movement lines."
279
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Noting how the subject of the drawing, a member of the Transformers, was something
that he was "proud to draw," he shared the following remarks on the work:
Victor: Uh, the details I wrote down, I think I've accomplished some ofthat. I wanted
to write more detail...
Carrie: Oh so you didn't get a chance to kind of write in the details, is that what you
are saying?
Victor: I just wanted to make the motions.
Carrie: Ah, so these movements that are coming off of these, what are these (referring
to lines on the drawing)?
Victor: That's him transforming into a car. . .That's the motions of him transforming.
Carrie: Those little lines coming off indicate. . .
Victor: Uh, they're movement lines.
281
Using "movement lines" to indicate the characters' transformation from "robots" to
"dinobots," Victor was able to communicate this important quality. He attended to other
details in his drawing as well, namely how part of the illustration represented the
cardboard box that the Transformer action figure was sold in, the way he imagined it
would have looked in 1975, which is when he estimated this particular figure would have
been on the market. As I worked to understand this particular piece of Victor's
illustration, the following dialogue ensued:
Carrie: And. . .what is he doing in this picture (referring to the last frame of the
illustration where the Transformer named Grimlock is pictured in a box)?
Victor: Um uh, he's just doing nothing, I'm just showing an action figure of him. ..Um
uh, that's uh, his container, uh, the action figure in the box. That's him in dinosaur
mode, you can see his sword is now his tail, he's uh, he's dressed, he looks like a
dinosaur, uh, basically, he's just an action figure I made, uh a poster of an action
figure of him.
Carrie: Now this picture, little, small picture in the middle of the. . .
Victor: That's him inside the container.
Carrie: What's the container?
Victor: Uh, this thing (pointing to the box outlining the small portrait and text that
reads "Dinobot Leader Grimlock").
Carrie: ...So he's for sale.
Victor: Yeah.
Carrie: And you'd buy him in the store in a package?
Victor: Uh, yeah. I think in 1975.
Carrie: Ok, so this is a picture of the person, I mean of this character?
Victor: Yep.
282
Carrie: Is he any different in this picture than he is here (pointing to the two
illustrations of Grimlock on the product box)?
Victor: Well, he is in dinosaur mode (referring to one of the illustrations).
Carrie: He's in dinosaur mode here.
Victor: Uh-huh. This is his robot mode (referring to the other illustration, inside the
smaller of the two boxes).
Carrie: Robot mode is the portrait (referring to the picture of Grimlock inside the
smaller of the two boxes). . .
Victor: Uh-huh.
Carrie: . . .What does this say (pointing to the text on the illustration of the action
figure box)?
Victor: (reading) A dinobot leader Grimlock transformers action figure— more than
meets the eye (he then adds the text that has been cut off the page).
The level of detail with which Victor approached the illustration, he noted, was indicative
of honing his abilities as an artist and "improving on drawing." He specifically found
this piece of work meaningful in its capacity to highlight "how much more information I
could put into this, how much I could really uh make more details about them, about how
they transform, how they behave, how they look like." Since he mentioned that he drew
this picture at home, I asked Victor how it related to school. He responded:
Victor:... This doesn't really have to do with school work. Uh, I'm just uh, well,
making my drawings a little bit better and more simpler [sic] to understand. . . As a
result of my creativity, my passion for drawing, something like that.
Carrie: So how would you say that your drawings have changed over. . .the years?
Victor: Used to be stick figures, but now I'm putting more information on there, more
details. Something like that.
Victor's acknowledgment that his "passion" and "creativity" were at the heart of what he
considered to be his improved capacities as an illustrator aligns with his frequent
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assertion that "being creative" was a significant strength. He also recognized and
identified with others who he thought shared this strength. Victor's discussion around a
documentary film that he had been watching in his Art class on the late artist Jean-Michel
Basquiat illustrates this observation.
Jean-Michel Basquiat. Having observed Victor approach his Art teacher at the
end of the period to say, "Thank you for showing that film," I asked him what had
spurred his apparent interest in the documentary. As he talked, he revealed some of his
thoughts on the meaning of art and creativity.
Victor: Well, it was about an artist who grew up tough. And it was a difficult life for
him actually. Man, there were a lot of things I thought interesting about his art.
Carrie: Like what?
Victor: Like first at the restaurant, he poured maple syrup; at first, I didn't know what
he was doing, but then I saw him with the fork bottom, he actually made something,
but the guy ruined it, saying, "get outta here, you're making a mess!"
Carrie: So what do you think he was doing with that syrup?
Victor: Making art.
Carrie: Do you think that everybody would see it that way, or?
Victor: No. They might think that he's crazy, nuts, maybe even psychotic. But that
girl saw it differently. The art was amazing.
Carrie: How did the girl see it?
Victor: She saw it as actually art.
Apparently impressed with Basquiat' s ability to create something novel out of unseemly
materials, Victor asserted that he found the film to be "a little bit great." Further, he drew
a parallel between Basquiat and himself noting, "Well, I think he's just misunderstood.
He does art in his own way. Sometimes like I do. Well excluding the pouring syrup
284
part. . .1 prefer paper and markers." While he later clarified that he did not feel
"misunderstood," Victor did identify with Basquiat in the sense that he followed his
unique vision for what constituted artistic expression. Interestingly, Victor's thoughts on
his Art class, which was typically computer-based, added nuance to his ideas around
what it meant to create art. He noted that he did "not really" enjoy his Art class, mainly
because in his mind, working on the computer juxtaposed the hands-on nature that he
associated with artistic endeavors. Victor instead articulated "I like the old classic art.
Sort of like this" (pointing to a drinking mug, which was decorated with an impressionist
painting of a cat and fish). He did however talk about some of the elements of his Art
class that he enjoyed, such as collaborating on assignments with his partner (Anthony)
using software programs such as Comic Life and Soundtrack Pro.
Writinfi. While drawing was clearly an area that Victor identified as indicative of
his abilities as an artist, his creative capacities were also evident in his writing. Victor's
perceptions about writing evolved significantly over the course of the study. He discussed
how in the beginning of the school year, he regarded writing as a "little bit" frustrating.
There was a specific assignment that he worked on in his One-on-one class that signified
the sense of frustration he felt, namely evident in his reaction to his teacher's
announcement that he would be writing a multi-paragraph essay on a topic of his choice.
Before brainstorming topic ideas, Victor responded to his teacher's observation that he
groaned when she brought up the subject of essay-writing saying, "Well you are telling
me to write an essay and I don't even know what an essay is." Though the prospect of
writing an essay seemed to Victor an arduous undertaking, his teacher nonetheless guided
him through the steps of brainstorming topic ideas. Once he had decided upon a topic
285
("winter"), he began constructing sentences around some of the ideas he had thought
about in the context of the season of winter, such as spending time with family during the
holidays, vacation from school, and enjoying the snow.
The winter essay integrated an important step in what appeared to be Victor's
newfound appreciation for writing: the ability to identify a topic that held his interest
enough to generate plentiful ideas in the formulation of an essay. As the year progressed,
he expressed a sense of gratitude for the teachers who had helped him build his writing
skills. During a discussion about the creative writing piece referenced earlier (written
from the perspective of Victor as a 99-year-old man), Victor noted how his Writing
teacher taught him the importance of several crucial steps in the construction of an
original piece of writing. He explained that:
I just think about the main idea really carefully, come up with a topic, write a thesis
statement. . .then the introduction. . .then the body, which is like uh, the paragraphs that
I have to do, like uh, what's this about, why does it matter, stuff like that, and the final
thing is the conclusion.
In addition, Victor noted how his teacher "helped me with the transition words, the cause
and effect words, and uh the MOPs [sic], uh, multiple paragraph outlines." Victor further
regarded writing positively because he noted, his Writing teacher guided him through the
process by encouraging him to choose topics that held his interest.
The skills he learned in Writing class were put to practice in One-to-one as well,
where he wrote a short story that he considered to be "the greatest essay I've ever made
up" and further noted how "It's uh, possibly the coolest thing I've probably done." He
contributed this piece to the study in an effort to share a discernable sense of pride he felt
in being "the number one publisher" of the story.
286
Figure 9: Victor's Story, The Jack Chronicles
1/4/Op
jfGSt J'retjsimj: Tfog Juck Chrvniciea
Once ¡here was ail orphan named "Jack", Hc was always a good buy . but the orphanage
didn't care aod whipped him ?U time» a day i The mi«bc!iuved. which he never did
Unfortunately, lhe owner of the orphanage thought Jack v.*·,-.* a bad egg all lise dise, ile
«,as greedy,, fiendish, ugly, and moldy all <iver his lac«. Jack was never adopted because
the couple* thsr. interviewed him all the time said, "He's a nobody." Jack had been in the
orph.m/ige for twelve naiaCiiblc yean,
One day, Jtwk found u Jockei in las chest where he kept his journal about him· miserable
h'.h day was hidden, snc it had a pielure of a couple inside. Jack tfioiigfar rrmvbe, i ? was hi ^
parents. When he mod tu ¿et the pictuics» ont of the ioc-ket. be found u map lluiL led from
Cïbiv tí' OiriEiiu behind Til·"' preture·;. ¦*?«, Hs-' think i. í-'jüí ? ? fiere the COUpíí ih'es Í O ge*
there he needed to wait xintil 1 -<V> A.M. beca-aûe that's when Lie cruci owner of tin-
orphanage was sleeping To keep hÜRscif awake, hi: d-ank mas* uuaiidlk.s ??]" soda tila? he
hid in his backpaex. The sugar made him a utile tired, bui, like cotice, soda kept him
awake.
1 le set ott on a long journey to lind the couple arid had many questions to ask them. He
went to the *'?tµ?? RernLini· FaIaLe" to get 3 boat to ss·] ??- the occur Ii ami him ari "arm"
and a "Ie^" ufbks ailowtimv, nhidn be hau µ,?-Uen boni cleanup the lavatory« making
dinner fm the owner, cleaning up artet the doc. and doing the di^hc·? He said, "lfs woffh
lhal iir" to the boat ieiitmg owm-r The nnncr, win > was a nice hairy old man, said,
t U3»y. Cívod kick, kid"" while Jack «¡ailed uDf CO the Sfa
Meíí.T*huc, back at the nrphuTugu, ihe truci n.jci thuacered "Where is Jack,'"' tie
searched hijjh and lov» for Jack ile even trippe i down tre km.; stairs .if Ae basement li,
lind him Wirn he -frarebcd LkI s drawers and tnutid uotlutic Uicie. ho knew he'd gone
\! find .he o >tsple So lie hifCd a btm-'b. of pirate·; to find faek Th. owner als« ? bi.îd uuklly
* Rjjji^ ms bon back ahvr or d^ad1" as he ¡slabbed hü Lilie into tìhe table
As our young hero sailed he whs rhinkw about lhe piuure of the couple, but just as he
jpispsd the oars on the boat he MW the pirates shooting their cannoni at his boat! One
big splash after anotncr Jack thought ibis' W-s the erd ihr birr; bul whul the pirates didn't
know was that Jack was an excellent swimmer mé when rhr pira*e? sailed away thinking
that Jack was rutting in Ms ""watery grave" Jaek swam fike a dolphin escaping Willi his
very life, Hc arrived un a beach and looked at the map saying. "* viar, I m in
Pennsylvania." Then, he went to the "UJd Foia!« inn" In suy Jnr the rihdit. Eie had
enough money ro stay for the ni uhi >a?:? erder ditmer. So, after gorging down bis meal, he
went upstairs* tu bed and slept
When Jack wdke up he WtEt dowjlto have some hrçak fasi. The nice Owner sa:d, 11WMt
will it be kid?"
287
TH have apple juice, with some French toast and scrambled eggs please," Jack
answered. After he gorged down Ms eggs and toast, washing it down with some apple
juice, he got out and asked for a map of Canada because the other map was wet and the
text was smeared. It turned oat he was close to Canada because Canada wasjust six miles
away from where he was in Pennsylvania.
Luckily, the inn owner had paid Jack fifty bucks for Helping him with the dishes. He had
enough money to take a "Greyhound bus" to Canada. When Jack looked at the uiap-
locket, now dry, he saw that the house where the couple might live was close by. Jack
then saw that the door to the house was- open. The house was old and sort of decrepit,
with gold aad Mue paint scraping off. Jack finally went inside the house. "We've been
expecting you, jack," said the man ofthe picture.
Jack saw Ae couple at last and said "Are you my paréete?"
"G?? sorry, but no," the woman replied softly. "We arc your Aunt and Únele."
"I'm Uncle Buck-Tooth," said the man.
"And I'm your Aunt Sweetheart," said the woman. So Jack, all teaiy-eyed, hugged them
both and said. "Where are my parents?"
His Aunt and Uncle said gloomily, "Your parents died in a horrid car accident, and when
we tried to lake you in, the blasted orphanage pried you from our hands, Wc didn't have
enough money to keep you. We loved you. with all our hearts Jack and I hope you can
forgive us for not trying to keep you."
"Why did you put a map in my locket?" Jack asked kindly.
Then Uncle Buck-tooth said, "We thought you might have fan trying to find us.'''
"Thai you could have mentioned earlier," JiKk said sarcastically. Then, they ail laughed
as Jack said happily, "Fm just glad I have a family that cares for me." Finally they went
fishing, which was Jack's dream and live happily ever after.
Describing the process of writing the piece, titled Past Treasure: The Jack Chronicles,
Victor shared the following:
Victor: Well, urn, me and [One-on-one teacher] were going to write an essay on what
thing that I could write about. I wrote like a kid finding his uh, finding the relatives he
never knew. That he kept a locket for luck from them. And uh, how the cruel
orphanage treated him—they thought he was a nobody, a loser, a worthless piece of
trash.
Carrie: And where did you come up with the idea to write about this?
288
Victor: I uh, thought it up in my own head... well most of the stuff she [One-on-one
teacher] wanted me to explain why he was being whipped 20 times a day. He never
really did anything wrong but the owner of the orphanage thought that uh, all the time
that he was a bad egg. Getting into trouble when it wasn't his fault, uh, like pulling
pranks, messing up the lavatory, uh, stuff like that.
Carrie: ...So urn, how did this, how does this signify something important to your
schooling?
Victor: Well urn uh, it's uh, I think the greatest essay I've ever made up. It's uh,
possibly the coolest thing I've probably done.
Carrie: All school year, or what do you mean?
Victor: Just this. Just on this essay, I put every detail as possible into this and, well,
writing about a kid that has a great adventure trying to find his family, well, that's just
amazing to me. . . I'm pretty actually, proud that I've done this because well, I was a
little shy to bring out my informations [sic] at first but now I've wrote a lot of them
down.
Carrie: What is your attitude toward writing now?
Victor: Great (shows thumbs up).
Carrie: Thumbs up. So does that surprise you about yourself?
Victor: Nah, not really. I knew I'm amazing.
Carrie: But did you think that you would enjoy writing?
Victor: No, that's the weird part.
Victor's surprise at learning to enjoy writing seems to have been a welcome
sentiment—it appeared that through the process of writing this piece of work, he
cultivated an understanding of himself as a person capable of craning a story that was
interesting and captivating. The Jack Chronicles revolves around an orphaned boy
named Jack who sets out to find his birth parents, a journey that includes traversing
water, land, and encountering interesting characters before he finally arrives at the home
of some surprising family members. The tale is rich with descriptors, such as those he
289
used in describing the orphanage owner, who was "greedy, fiendish, and moldy" amongst
other things. Victor's imagination is evidenced in several parts throughout this story,
such as when he unveiled how Jack found a locket with a picture of an unknown couple,
as well as when he noted "as our young hero sailed he was thinking about the picture of
the couple, but just as he grasped the oars on the boat he saw the pirates shooting their
cannons at his boat!" Victor's use of a variety of writing devices in the story contributes
to its originality and sense of vibrancy. For instance, he emphasized Jack's thoughts by
italicizing them, noting, "So, he thinks, that 's where the couple lives'" and used idioms in
his assertion that renting a boat cost him an "'arm' and a 'leg' of his allowance."
As are his drawings of Transformers and the detail with which he attended to their
capacities (i.e. their ability to evolve from dinosaurs to robots), the creative choices that
Victor made in writing the Jack Chronicles are suggestive of an active and vivid
imagination. Further, the creation of an original character, Jack, and the use of an array
of methods that inform readers' understanding of Jack's internal state of mind suggests
Victor's ability to take the perspective of others (demonstrating a ToM). Likewise, as is
particularly notable in his discussion of the way Jean-Michel Basquiat poured syrup in an
act of artistic expression, Victor's identification with a fellow creative person suggests
that he understood a facet ofthat individual's state of mind.
Victor's insights around creativity and imagination thus counter stories that are
commonly told in regards to individuals labeled with AS, particularly in their
illumination of his capacities to cultivate original plots, drawings, and characters. While
he benefitted from the guidance of his teachers in the process of acquiring the skills that
eventuated in his strengthened abilities as a creative writer, Victor did not seem to
290
experience difficulty cultivating novel ideas and imaginative details. Rather, Victor's
expression that "I don't even know what an essay is" seems to have been at the root of his
initial feelings of frustration around writing. Victor's abilities as a writer provide an
instance to realize that given practice using a few straightforward "rules" for writing, he
was able to learn how to write stories that were rich in detail and imaginative. And while
he claimed that he benefitted from learning a specific set of steps to follow when writing,
the skills he learned seemed applicable to a variety of students—and thus contrasted the
lock-step nature of strategies often prescribed or recommended for students with AS (e.g.
those that center on socially-based interventions and modifications).
Victor's stories around creativity and imagination likewise summon new
understandings about students with AS possessing the ability to attribute a ToM to others.
Clearly, Victor's descriptions of Jack's internal state throughout the duration of the story
as well as his interpretation of Jean-Michel Basquiat's "misunderstood" identity indicate
his interest in others' states of mind.
While Victor identified opportunities to be creative as a highlight of his schooling
experiences, he also shared insights around areas in which he struggled. Indeed, as the
following section illustrates, struggle manifested in several ways and thus played an
important role in the way he experienced life in school.
Struggle: "I Get Ticked Off so Easily. I Just Don't Know How I Can Handle It"
While writing was one area that Victor experienced ongoing struggle, he
identified other school-based struggles as well, and in doing so illuminated the ways that
he navigated situations that represented adversity or incited his frustration. His stories
around this theme illuminate how areas that Victor identified as challenging were often
291
discusseci with marked emotion. Victor thus provided evidence that individuals labeled
with AS can and do relate emotionally in ways that are not indicative of impairment
(Bledsoe, Myles, & Simpson, 2003, for instance, note that students with AS are often
perceived to be emotionally impaired).
Socialization. One sentiment that Victor conveyed in discussing struggle was a
wish to avoid the topic. In the midst of a discussion about an art class that he had taken a
couple of years prior to the study, Victor noted: "I don't want to talk about it because I
haven't got good memories about that. Because Mom wants me to be social, but I like to
be condemned where nobody can see me." Interpreting his mothers' intent for him to
take the art class as indicative of her will for him to gain experience in socializing, Victor
did not provide any more information on that class. Conceptualizing his desire to be
alone as wanting to be "condemned," he provided a glimpse into the struggle that he
engaged with his mother over the topic of socialization. However his sentiment was
complicated when, in another instance, Victor noted that he had conquered what he
identified as a goal to engage more socially during lunch hour. This goal was spurred by
others' ideas for the way that he ought to spend his lunch period, as he noted how "the
teachers said, 'Victor, why don't you eat with some of the students because you might
not feel so alone?' So I began to do that and 'boom', I've got a lot of friends." He further
expressed how he had "learned to be more social; I used to eat by myself, but now, I'm a
social guy." In another interview, he noted how overall he had progressed as a student in
the following ways: "I learned to mature, to not be alone, and to have more friends."
Victor's complex views on himself as a "social" person were seemingly telling of his
struggle to integrate others' wishes with his preferred way of being (sometimes
292
"condemned" or "alone")· While he initially chose to eat lunch by himself, Victor took
action to change his ways in light of his mother's and his teachers' values. His actions
and words revealed his keen awareness of the discord between what others thought he
ought to be doing and how those ideas differed from his propensities. Further, they also
seem to reflect, at least in the realm of socialization, Victor's acceptance of others'
suggestions for his behavior.
Interestingly, I observed Victor in a variety of contexts wherein he was expected
to interact with others, namely, as discussed earlier, in his classes where his participation
ranged from conferring with his peers and teachers around problem-solving, sharing
information during class discussions, and bantering with his peers during spontaneous
encounters. During "down" times, such as in between classes and after school, he
however seemed to prefer to be alone. While he appeared to enjoy interacting with others
at specific times of the day, Victor clearly articulated his regard for friendships. In a
conversation about a student that Victor had previously identified as a friend of his, he
shared the following:
Um, he's ok. I always sit next to him in lunch. And we always talk about something
from shows. Mostly Young Frankenstein, but also there's a big tall kid named Tyler
who's my friend. Basically, some of the people I hang out with are the coolest. I think
friendships should be shared by everyone. . .
Victor's ideas on friendship, especially that they "should be shared by everyone,"
evidence the importance he placed on them. Further, the friends that he identified,
several of whom I observed him interacting with (e.g. during lunch hour, during Study
Hall) often appeared to reciprocally participate in discussions, role-playing, and so on.
Nonetheless, his abilities to socialize were considered deficient, as demonstrated in his
comment about his mother's and his teachers' wishes for him to "be social" and alluded
293
to in his comment regarding having met the goal of becoming "a social guy" despite his
earlier mention of wishing to be "condemned" and left alone.
Victor seemed to struggle with negotiating others' expectations for socializing at
particular times and in specific contexts with his own wishes. Although Victor engaged
socially in a diverse number of contexts, at particular times of the day his participatory
preference changed and he wanted to be alone. It appears that Victor's wish to be alone
during lunch and after school— times that many students regard as opportunities for
socializing—was troubling for his mother and teachers, who seemed to conceive of these
times as important venues for Victor to interact with his peers. The act of conforming to
others' wishes suggests that he identified their values as important, despite his personal
preference to eat alone. Further, in framing his capacity to "not be alone" and "to have
more friends" as signifiers of maturity, Victor appears to have interpreted these qualities
as indicative of personal growth.
Respecting others. The ability to get along with others may have been another
skill that Victor's mother wished for him to learn, and thus an additional impetus for her
to encourage his socialization with peers at lunchtime and after school. Although he
identified several friendships throughout the study, Victor also made reference to (though
with far more brevity) peer relationships that were contentious. In one instance, Victor
shared a school-based goal that he had for himself: "behaving." When I asked him what
he meant by this, he said, "Like trying not to say anything mean or something hurtful."
While Victor chose not to elaborate on whether or not this goal was tied to some concrete
encounter or experience, my understanding of his sentiment was informed by a comment
that his mother made to me. One day, she called to share that Victor had been involved
294
in an altercation during lunch hour wherein he had choked two students. Prior to this
incident he had experienced an altercation with one of the students, who was black, and
at that time Victor had called him a derogatory name. While Victor did not discuss the
altercations, saying that "I'd rather not talk about it," he did address the topic of "bigotry"
in the context of a discussion I had observed in his Art class. During that class, Victor's
teacher engaged students in a short discussion about an incident that had transpired
earlier in the day. While the teacher did not go into details about the incident, when he
asked the class what they remembered about a larger discussion they had engaged in as a
group earlier around the incident, Victor responded "We learned not to use racial slurs."
Later during our interview, Victor shed light on his thoughts on racial slurs:
Victor: . ..I don't want to talk about the [incident].
Carrie: So you. . .are not comfortable talking about the actual incident, whatever
happened, right?
Victor: Uh-huh. It was about racial comments. . . Well, basically he [Art teacher] was
saying that, well, some things are very hurtful what you say to other people. Then he
was saying back in is day, in Pennsylvania, it was ok to call black people [derogatory
reference]. But he never did that—because he knew better. Basically [he] says we
can't make those kind of comments, like [derogatory reference to being gay], or other
comments that hurt us deeply. So he called it, I forgot the "b" word—
Carrie: Bigotry.
Victor: Bigotry—that's what it was called. We were discussing about that. Well, it
was actually ok now because the incident is over. . .someone should never say
anything hurtful.
Carrie: So you agree with what [Art teacher] is saying?
Victor: Um-hm. And fighting doesn't solve it, so I really agree with [Art teacher] that
we can never do that. But the incident is over, so it's fine.
Victor's insistence that that since it "is over, so it's fine" suggested that he negotiated
struggle with certain issues such as the use of disrespectful language in part by trying to
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quickly move beyond past conflicts. Expressing a desire to discuss only what I had
observed (e.g. the class recap of a previous larger dialogue around the incident) and to
steer clear of any discussion about the actual incidents, Victor chose to keep details
private. His sentiments suggested his desire to move on as well as his wish to avoid
engaging with the seeming discomfort that the altercations (whether they involved him
directly or not) engendered.
Negotiating frustration. Victor identified how situations in school often fueled his
feelings of frustration, noting how "I feel like I need a vacation all the time from there"
because sometimes people "ticked" him off. In such times, Victor expressed that he just
wanted the day to be over. When I inquired about how he handled such instances, Victor
noted, "Well, I. . .uh, rarely remembered to take my breath, you know. . .because I get
ticked off so easily. I just don't know how I can handle it. That's all." Victor's struggle
to manage frustration in particular situations was foreshadowed in the previous
discussion about the evolution of his thoughts on writing. In particular, his reaction to
being assigned a multi-paragraph essay revealed a common way that he engaged topics
that incited his frustration. Victor's responses to such situations were often rife with
emotion— such as when he grunted at the thought of having to write an essay, and the
exasperated tone with which he noted he had "no idea" what an essay was.
Early in the study, Victor conversed with his One-on-one teacher about an
incident in one of his classes wherein he had crumpled up a portion of a quiz because he
was having difficulty completing a word search on the last page. As they brainstormed
ways that Victor might respond to similar classroom-based frustrations in the future,
Victor asserted, "I hate to say it, but I'd just have to cheat." As his teacher went on to
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suggest other ideas, Victor bit his nails and hit his head on the table to demonstrate
another possible response, which he noted was to "knock some sense into my head."
Toward the end of the conversation, he suggested that "plan b is that I could say I just
can't do this and they'll understand." During our subsequent interview, as Victor and I
discussed his quiz, he shared some information on the incident his teacher had
referenced.
Carrie: . . .from what I could see, you did pretty well on the quiz?
Victor: Yeah but those crosswords [sic], uh (sort of exclaims, in an exasperated tone),
the ones you have to circle. . .
Carrie: Right.
Victor: Man.
Carrie: Can you talk about that a little bit? Because that came up in One-on-one too. . .
Victor: Yeah—I just threw it away.
Carrie: You threw what away?
Victor: I threw that part away.
Carrie: Ahh...
Victor: I wasn't angry, but I wanted to get past it.
Carrie: So by throwing it away, it allows you to just like not deal with it anymore.
Victor: Um-hm.
Carrie: And that was one part of the quiz?
Victor: The last part.
Later, Victor noted how the word search was supposed to be "fun," and that throwing it
away had not affected his overall grade on the quiz. He shared that he felt like throwing
it away was no big deal, and expressed, "Yeah. Man. It was enjoyable to get that off my
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back." Victor's strategy of throwing away the portion of the quiz he found to be difficult
is reminiscent of his avoidance of certain topics that he found to be uncomfortable.
Based on the tenor of his responses to frustration, it seems that Victor experienced
distress at the thought of revisiting situations that evoked strong and apparently difficult
emotions.
Victor's insights and stories around the theme of struggle illuminate how he
reconciled his propensity to avoid frustration with others' suggestions for his behavior.
Although he engaged socially in several school-based contexts, his preference to be alone
during particular portions of the day led to an interpretation of him by his mother and his
teachers as lacking in social abilities. His preference to avoid talking about and thus to
"move on" from past events and to discard material signifiers (i.e. a page of a quiz) of his
frustration appear to have enabled his ability to escape (re)experiencing strong and
difficult emotions inherent to situations that incited stress. His often emotionally-laden
representations and insights around struggle sometimes concur with common narratives
on AS (i.e. he does, at times, prefer to be alone, or "condemned"); however they also
complicate and/or counter others, namely those narratives that position students so
labeled as lacking the abilities to socialize and emotionally relate. While they complicate
common narratives on AS, Victor's stories are reflective of and relevant to the challenges
and issues he engaged as a newly-minted high school student.
Similar to the way that struggle informed the quality of Victor's participation in
school, a consistent feature of his engagement across a variety of contexts was his
propensity to entertain himself and others. In the following section, I discuss this final
theme in terms of how entertainment appears to have enriched Victor's experience as a
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high school student, paying particular attention to the way that it played a role in
strengthening social connections between Victor and his peers. Victor's stories and
insights around the theme of entertainment thus stand to illuminate how he engaged what
he identified as a "gift" to make connections with others. In doing so, his narrative
highlights his sense of humor and the ability to take the perspective of others.
Entertainment: ". . .It's A Gift. . .Fm like A God of Laughter"
As previously illustrated, Victor seemed to be in constant motion. While he
expressed himself through movement in nearly every context I observed, this seemed
especially pronounced during classes that did not invite active, kinesthetic participation,
perhaps because his actions stood to contrast the relative stillness of his surroundings.
Singing under his breath, fidgeting with his feet, and making sword-fighting motions with
his arms were common activities that Victor engaged as he simultaneously completed
classroom-based seat work. While these motions were pronounced in his academic-based
classes, they concurrently seemed to be diluted versions of movements he made in other,
less structured contexts. The sword fights, for instance, foreshadowed his lunchtime
scene reenactments with his friends, while singing under his breath represented a faint
glimmer of an end-of-the-day song recital for friends during Study Hall.
His movements also seemed to reflect Victor's interests: drawing and feigning
sword fights in his seat, for example, seem to have mirrored his interest in Transformers
and watching films about them. Similarly, singing under his breath was indicative of his
interest in listening to music. While Victor described drawing as "like entertainment
when I'm bored," his illustrations even connoted movement, as exemplified in his
Transformers drawing. The most powerful examples of the role of entertainment in
Victor's life as a student, however, are perhaps those that highlight his enjoyment for
dramatically reenacting scenes and singing for others.
Scene reenactments. One instance of scene reenacting occurred during Science
class, where I thought that Victor was playing out a scene from a musical he had recently
gone to. During our interview that day, Victor responded to my inquiry about that
observation, highlighting how he often engaged in scene reenactments with Anthony.
Carrie: Today in Science, I noticed you were acting out some scenes. Was that from
The Young Frankenstein!
Victor: No, that was The Honeymooners. Anthony is just a lot really crazy. I mean,
like hilarious crazy. He likes uh, he and I do "TV Fight" all the time which is one
episode ?? The Honeymooners. He's just flat-out hilarious.
Referencing Anthony's "hilarious" qualities, Victor took the opportunity to share how
reenacting scenes enabled his interpretation of Anthony as a person with a sense of
humor. Interestingly, rather than speak about the actual program {The Honeymooners)
that the scene derived from, he chose to focus on the person with whom he shared the
experience. Similarly, when discussing elements of his Art class that he liked, Victor
spoke about recreating scenes on the computer using a program called Comic Life, giving
equal emphasis to the origination of the scene (from Talladega Nights) and to Anthony's
role in the activity.
Carrie: You did look really interested in what you were doing today [in Art class]...
Victor: Yeah, me and Anthony were doing this new skit that we call Talladega Nights.
Carrie: On the computer?
Victor: On the computer. Well, it's like this: It's about a movie, Talladega Nights,
about Ricky Bobby. Oh, man. It's flat-out hilarious. . .and we sometimes act out the
parts (goes on to use an accented voice to demonstrate how they "act" it out).
Carrie: Were you using the Photobooth program?
Victor: No, it was Comic Life.
Carrie: You were making dialogue bubbles come out of your mouth and Anthony's
mouth.
Victor: Uh-huh. Well, those parts were actually funny because they were from the
movie and I was trying to be creative. I was making Anthony say, (goes on in the
accent again, reciting a line from the movie). In one scene, he thinks he's paralyzed,
but all of the symptoms are physically in his mind. Psychologically, you know.
Alright...
Carrie: So you put the dialogue bubbles in as you were acting out the skit with
Anthony sitting next to you so you were actually writing what you were acting out?
Victor: Uh-huh.
Carrie: . . .Have you used that program before?
Victor: Yeah, we did it on The Honeymooners once. You should have seen it—"TV
Fight" on the wall. Me and Anthony said, this is Anthony, first of all: "Hey, Captain
Video!" and then I was Ralphie: "Captain, what are you doing?" "I'm watching
Captain Video!"
Victor's description of recreating scenes from both Talladega Nights and The
Honeymooners underscores how his sense of humor was evoked in the process of
recreating scenes from these programs. He also iterates the collaborative and interactive
qualities of this type of participation—namely in his description of the way that he and
Anthony carried out dialogue from The Honeymooners while subsequently typing the
words in the dialogue bubbles.
On another occasion, Victor shared how his budding friendship with a student,
Devon, also integrated his interest in reenacting scenes. In a conversation regarding
some of the activities the two had shared together, he noted how "One time I showed the
class my DVD of Young Frankenstein, we watched it a little, we even did some scenes
from it, Devon and me." Victor's enjoyment of sharing his appreciation of television,
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movies, and musicals was not limited to his peers, however. During one observation in
his Writing class, I noticed that while waiting for the dismissal bell to ring, Victor told his
teacher about a scene from a television show that he had watched the previous night. His
teacher in turn engaged Victor in a conversation. Victor thus demonstrated how tapping
areas of interest—watching television and then acting out favorite scenes— allowed him
to strengthen rapport with others. Further, his propensity to engage others in reenacting
scenes and to retrospectively discuss such engagements with an emphasis on the
individuals who were involved suggests that Victor not only valued relationships with
others, but illustrated his capacity to socialize in ways that reflect mutual interests.
Singing. During an observation in his Study Hall class, I recorded the following
notes in response to a struggle Victor engaged for the duration of the class period, as he
juggled work with recreation:
Nate asks Victor ifhe wants to sing a song along with a program on his laptop.
Victor looks torn—he wants to sing to it but also tofinish his work. He tells Nate,
"After Ifinish my work. " Nonetheless, he does both—sings to the songs on the
laptop (in an audible voice, loudly, clearly, heartily) while doing his homework.
He sort ofalternates between the two—he doesn 't miss a beat with the lyrics; the
other students seem to get a kick out ofhim and like to hear him sing. Hefinishes
his work andpacks up, singing all the while.
While he effectively attended to both completing his math homework and singing along
with a YouTube video, Victor simultaneously provided a moment of entertainment for
his peers (there were seven students total in class on this particular day). From my
perspective, Victor's peers seemed to appreciate the enthusiasm with which he sang to
them, as suggested by the way they smiled and turned their attention to him as he sang.
Later during an interview, Victor noted how he had intended to entertain them:
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"Well, I just sang that for my class because I wanted to make them laugh I think. I have a
talent for that, it's a gift. ..I'm like a god of laughter." Entertaining was something that
he felt "very comfortable" doing, although interestingly he shared how he hesitated to
sing that particular day due to my presence in the room. He confided, "Yeah, well it
[song] had a little inappropriate words, and I didn't want to say it in front of you."
Victor's sensitivity over how I might interpret his use of "inappropriate words"
was indicative of his ability to consider the perspective of another person (to attribute a
ToM). In addition to highlighting how Victor attributed a ToM, his narrative around this
particular school-based interaction counters popular contentions that students with AS are
"self-centered" (Myles & Simpson, 2002, p. 133).
Victor's stories around entertainment complicate several conceptions commonly
associated with individuals labeled with AS. First, his stories suggest that he engaged a
"gift" of singing and an apparent enjoyment of reenacting in ways that promoted his
social relationships. Significantly, these social relationships were strengthened without
the intervention of adult others, unlike the manner in which he arrived at meeting his
goals to improve his social abilities during lunch time, discussed earlier in this chapter.
Second, he illustrated an adept ability to ponder and respond to another's (my) presence
in the room and adjust his participation in light of how he imagined his actions might be
interpreted (by me), an act that suggests a ToM. Finally, as his descriptions of reenacting
scenes with Anthony suggest, Victor revealed an appreciation for a sense of humor,
naming the "flat-out hilarious" qualities of his friend and of a favorite movie (Talladega
Nights).
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Each of the themes discussed in this section represent issues that Victor
considered to bear importance to his life in school. They thus are tied to his identity, a
topic that I discuss in the following section.
Victor's Adolescent Identity: A Summative Discussion Engaging Three Lenses
Using three primary lenses— peer/friend, student, and AS/disability—I now turn to
discussing how a variety of facets of experience including past experiences, current goals,
and enduring challenges comingled to inform Victor's sense of identity during his first
year as a high school student, a pivotal point in time. I share data from all three sources,
some previously presented and some presented for the first time, in order to provide a
summary of how in cultivating a sense of identity, Victor highlighted both his capacities
and his methods for negotiating struggle.
Peer/Friend
While he conceptualized his friendships overwhelmingly as sources of enjoyment,
Victor's discussions of friendships from his earlier years (i.e. before attending his
middle/high school) were limited to a few instances where he talked about Charlie,
wherein he reinforced the idea that he was still indeed his best friend. He mentioned that
he rarely spent time with his friends outside of school, although he talked about having
attended Devon's Bar Mitzvah and vacationing at Charlie's summer home. He also
named his brother as a person with whom he shared considerable time (at home).
Interestingly, Victor often considered peers that he only occasionally interacted with, at
lunch for instance, as friends. At one point he mentioned a peer named Jake, noting how
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although they only saw one another at lunch time, they "have a perfectly good
friendship."
Though it seemed to be an exception, there were instances where Victor did not
regard a peer as a friend. In particular, in a conversation about friendships, I asked him
about a student, Leo, that he had referred to as a friend early in the study. Although he
noted how Leo was "a pretty nice guy," he iterated, "I'd rather not discuss my personal
life with him." More often than not, Victor represented himself as a person who had the
good fortune of enjoying several friendships. He recursively identified Anthony as a
close friend, and of his friendship with Devon he noted:
Well, he's a pretty sweet kid. He invited me to his Bar Mitzvah and I had a great time.
It was amazing actually. Man, there is one dance move I just made up and I did with
the other guys: it's called the Pogo Stick and we all jumped up and down, and in a
group hug, I guess. Putting our arms around each other's shoulders. Well, my
friendship with him is pretty much good.
Toward the end of the study, his "list" of friends expanded to include a new name: Nate.
This development was striking to me in light of what I had conjectured, as indicated in
the following interview excerpt, to have been a history of tension between Victor and
Nate. During a discussion about ways in which he felt he had grown over the course of
the school year, Victor shared the following:
Victor: . . .And uh, the last thing I want to say about how I've matured is the way I've
been with friends. Well, the old friends I've met kind of had a bumpy slope, but after
getting to know each other better, they've become the best of friends forever.
Carrie: Like who?
Victor: Like Anthony, uh, Devon, we didn't have a bumpy road actually. Nate,
Charlie, is on top of my list, the very top. And that's basically it.
Carrie: Is Nate someone you had a bumpy past with?
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Victor: I think so once.
Carrie: What happened?
Victor: I can't really remember. But we're this close, eye to eye (puts up two fingers
and motions to his eyes).
Carrie: . . .in the beginning of the year, back in October, you didn't mention Nate. He's
a new name.
Victor: Well I guess I forgot to say that. . .1 just felt like bringing him up, because
we've been like the best of friends ever since. I wanted you to know him better.
Victor later framed his friendship with Nate as analogous to "coffee" and "cream," where
Nate (the coffee) was "the life of the party" and "full of intensity" and Victor (the cream)
was "smooth as cream." Explaining how Nate's "intensity" was tied to being "the life of
the party," Victor may have also been alluding to the fact that the color of Nate's skin—
black—contrasted Victor's, which was white. This observation bears significance in
light of Victor's history of having altercations with a black student (i.e. the choking
incident) as well as his apparent participation, along with classmate(s) in using "racial
slurs" earlier in the year. Nate and Victor had apparently reconciled any differences that
may have existed between them, as suggested in Victor's comment that Nate told him
"Victor, you and me are like this (motioning with two fingers between his eyes and my
eyes to demonstrate)."
Victor's ability to readily identify several individuals with whom he shared
trusting friendships ran parallel to his frequent references to a struggle he engaged around
making "new friends" and honing his social abilities (becoming a "social guy"). His
identity as a peer and friend seems to have reflected how attending to his struggle gave
way to the cultivation of new friendships, and at times, he credited his teachers and
mother for prompting him to make strides to engage socially. While he avoided sharing
details around past events that he articulated as "bumpy," Victor instead appeared
dedicated to maintaining a focus on the present moment and on future goals. In doing so,
he seemed to iterate a value of what is and what might be over what was.
Student
Victor was reluctant to provide information on his early years as a student, from
kindergarten through early elementary school, although he did mention he attended
several schools, some public and others private. To my inquiry about those early years,
he responded "my mind's a little blurry." As our conversation progressed, he shared, "I
don't really want to talk about it 'cause it stank." He thus approached the topic of his
earliest school years similarly to the way he engaged other forms of struggle: with a
marked desire to avoid rehashing details that he seemed to wish to forget. While he
avoided discussing in detail many past struggles, however, Victor did not shy away from
sharing how he had improved upon areas that he identified as difficult. When he
discussed current experiences as a student, Victor tended to focus on what he perceived
to be indicative of his growth in a number of areas, such as social, academic, and artistic.
His perception of self as a student thus appeared to center on goals that he had recently
achieved as well as those that he continued to strive to meet.
During an interview wherein we discussed various facets of Victor's perceptions
of himself as a student, he shared the following:
Victor: Well, I think I see myself like a natural guy as a student. Just a natural guy—
who I am really. And that's basically how I see it.
Carrie: A natural guy. Can you talk about some of the characteristics that make this
natural guy...?
Victor: Well, he has like this suit, and he does these problems on the computer, he
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tries to multitask, then when he's tired, he goes home. That's just the same with me,
only we stay in for most of the day.
Carrie: . . .So, if I could interpret what you are saying, would it be that you take your
job as a student as seriously as a person who gets dressed up to go to their job
everyday?
Victor: Um-hm.
Later, using similarly vivid descriptors, Victor specifically addressed his identity as a
math student, an area where he apparently felt he excelled. He noted:
Well, again I think of myself as that average man, but he has glasses and crunches
numbers, he uh, divides the amount of salary that's due, he transports some of the
money of the company he works for to Swiss bank accounts. . .
When I inquired about the meaning of seeing himself as an "average man" with
"glasses," Victor interpreted this image to be "Like a genius. A math genius. That's how I
see it." While he thought of himself as a "math genius," Victor also identified written
language and literature as areas of strength. Although he remarked that written language
was the academic area that he had to work the hardest at, he did highlight that class as
one in which he did his best work. Victor shared several instances (many of which have
been described earlier in this chapter) wherein he experienced success with the subject
area. While he shared many examples of creative writing to indicate growth in that
particular area and in an effort to express a sense of pride in his work (e.g. as in The Jack
Chronicles), Victor also contributed a piece of work (a quiz) that he completed on
idioms. In doing so, he again iterated how earning an "A" on this particular piece of
work bore significance to him in light of previous struggles. He noted how this particular
quiz was "the only one I got a hundred percent on. And I did my best on it," a reality that
thus rendered him "very proud."
Figure 10: Victor's Idioms Quiz
Date:
' . ; :.,
Idiom Quiz #3: Throw" Idioms
Directions: Underline the idiom in each sentence, then write the
meaning of that idiom on the line below.
1 . Although she had never been awny from home alon© before, SaNy threw
caution to the wind and chose to go to ©allege a thousand miles away,
,,Meanirg:
- --·
i- s..-> Kl·-*
^'?
r(LAc ^i
k C-1
A *-^ ,?^ 4.?.í...J...w—xj¿±:
? 'if h%c
2, When i was cleaning out my binder, I was about to throw away my study guide
for midterms when my teacher totd me not to throw the baby put with the
bathwater.
Meaning: ,ÍiKmL·^ \ti¿.pLjL¿ÍÍ£ fK ;-g^L¿l3iL)\'U
3, When the fudge heard Siat the accused had already served time for robbery
twice before;^ho decided to tìirow the took atjriim and send him to fail for life-
Moaning: . -r¿ fd ? i S h _. HJ.-ù*v£5p.$ i£/i G?
_. ·*·-' V ?,-l· V , ? ? ^l .f ^ i/. ; ,? ¡ fr ,- „ ¦· - .
?
4, Fred has always dreamed of the romantic life of a farmer, but spending a
summer experiereing. what farming is really like had the effect oí îhrowng cold
water on,his -yismo-
•Meantng: . T & W' ? - Il ¿W^l >C{<\? '->J¿'*
jLkmíj -t.-Moti—.' t ' ^?£i r1^ T-'i^i.'-:.-:·1
5, Even though the hockey team was exhausted and down two goals with onfy 10
minutes left in the game, they refused ?? throw injhe towel.
Meaning; __s-I
^ ,
.
s-' ' ùUzlà
î1¿_L-'r1/ ? -.¡i-^-t-v" H »' -I' .~*-i¿^-
?.-' H -¦ \ \ ; I ^>/
—
'
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Victor further revealed how particular habits engendered his ability to do well on
the idioms quiz. Discussing how he learned several common idioms, Victor shared, "I
like drawing pictures that show their meaning. For [the idiom] 'keep your head above
water' I drew a guy with his head above a body of water." He also described how part of
his ability to successfully earn a "hundred percent" on the idioms quiz was attributable to
having studied idioms out of a book, an endeavor he engaged outside of class. In
conclusion, Victor noted how this particular piece of work signified "that I'm still
improving and getting those hundred percents, but I gotta focus most of the time."
It was common for Victor to discuss the role of "focus" in his ability to meet
school-based goals, and he even articulated, "That's my major thing: focus." As
discussed earlier, he often characterized the quality of his school days as requiring intense
focus with little room for "free" time. In response, he drew illustrations after completing
his work, a habit that seemed concomitant with a sense of revitalization. Victor discussed
other strategies for sustaining a sense of focus throughout the day too, particularly when
his classmates were inclined to "act like a bunch of monkeys":
Victor: I don't know, it's just like natural for me to ignore most ofthat because I'm
doing my own thing.
Carrie: I mean you ignore it and say it's natural, but there have got to be ways that
you. . .
Victor: act?
Carrie: Yeah, act, and also there's got to be ways that you work to stay focused, right?
Victor: Well, I just uh, concentrate real hard on the work and just try to focus no
matter what. All distractions are blocked from my mind once I work.
Carrie: ...So, you can work with a lot of noise. You can get your work done even
when there's a lot of noise.
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Victor: Yep.
Carrie: Do you think that some students have a hard time with that?
Victor: Maybe. Or some of the students just want to play instead of work... Most of
the time, I just say "just be quiet," but other times, I feel like they're yearning for
freedom. I guess that's what happens.
Along with Victor's ability to "ignore" potential classroom distractions, he also credited a
quality of teachers that helped him to maintain a sense of concentration in class, noting,
"I like teachers that tell us to stay focused."
Weaving an understanding of himself as a "genius" with one who engaged
struggle, Victor negotiated a variety of features in the cultivation of a student identity that
reflected his strengths and vulnerabilities. While teachers' encouragement to remain
focused served to bolster Victor's ability to find ways to mitigate potential distractions,
he also engaged particular habits such studying from a book (as well as engaging specific
skills and strategies, as discussed previously in terms of writing) and drawing illustrations
which supported his ability to meet goals in areas that presented him with challenge.
Although he did not discuss his past schooling experiences, Victor did comment
that they "stank." Rather than focus on what he apparently deemed distressful, Victor
instead set his sights on current realities (e.g. having received an "A" on an idioms quiz, a
content area that he struggled with) and future goals (to continue focusing on efforts to
improve his academic and social-based skills beyond his current capacities). His
employment of particular strategies such as ignoring potentially disruptive behavior of
his peers and concentrating on the task at hand appears to have enabled his ability to
understand himself as one who, akin to an adult who dresses up to go to work each day,
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was capable of meeting the requirements of a typical day on the job (albeit, minus the
part that entailed embezzling funds).
AS/Disabilitv
Victor did not directly refer to his label of AS. However, while he identified and
represented several areas of struggle, one area stands out in terms of the way it evokes
majoritarian narratives on AS and schooling. Specifically, Victor frequently represented
himself as at odds with the way that others perceived him socially. This can be seen in
his recursive references to goals he made for himself (prompted by others) in the name of
learning to be "more social." Since the ability to socialize (or perceived lack thereof) is
often at the center of AS discourse, it seems that Victor's response to others' ideas about
how and where he ought to be "more social" can also be understood as a response to
larger, overarching narratives around what it means to be social and accordingly, what it
means to "have" AS.
Victor's conception of himself as a social being dually enveloped others' ideas
about his (social) ineptitudes and his own contention that he was a "god of laughter" who
loved to entertain others, had a "best" friend, and an ever-expanding list of other friends,
one of which he described as like a "brother." His social connectedness was thus
palpable throughout his school day, though not always at times commonly employed for
socialization, such as after school and during lunch period. His preference to be alone at
those specific times was interpreted by others as evidence of deficiency, an area of
weakness.
Victor's integration of the wishes of others (his teachers, his mother) into new
ways of behaving (being "more social" at lunch time, and "a social guy" in general) in
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light of his stated preference to be left alone led to his assertion that he had learned to
enjoy lunchtime and had immediately ("boom") garnered more friendships as a result.
The gratitude and sense of accomplishment that Victor expressed over embracing and
meeting goals suggested by others seems to some degree representative of "minority
majoritarian storytelling" (Solórzano & Yosso, 2002, p. 28) in that he seems to have
aligned himself with values that reflected expectations of the majority culture, or nórmate
standards (Garland Thomson, 1997). However, it is important to highlight that while
Victor expressed a sense of accomplishment over learning to behave in ways that
indicated the ability to socialize appropriately, he also did not fail to assert his
perceptions, namely that the idea to behave differently in particular situations (i.e. lunch
period) was not his idea. Instead he articulated that it was an idea shared by his mother
and his teachers, and his compliance at least initially appeared to be out of respect for
their values and wishes.
Victor's contention to carry on in efforts to do his "best" in school thus seemed to
connote his ongoing commitment to straddling his own propensities with goals asserted
by others. Interestingly, he did at times convey that meeting goals envisioned by others
led to a sense of enrichment and satisfaction, a reality that seemed in part to reflect his
trust in others' ideas about what was right for him. Equating his endeavors to do his
"best" with "being myself," Victor acknowledged the importance of accepting who he
was in the process of pushing himself to do well in school. Indeed, his articulation of the
meaning of "being myself not surprisingly conjured images of the proverbial balance:
"Just uh, the person that I am right now. And not overworked, underpaid, and stressed
out."
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VII-- MULTIPLE CASE ANALYSIS, DISCUSSION, AND IMPLICATIONS
In the previous three chapters I conceptualized the myriad ways in which Susan,
Alex, and Victor engaged various schooling experiences as novel, creative, and indicative
of their capacities. In those analyses, I attended to the contexts and multiple facets of
experience that informed the particular instances wherein participants' words, actions,
and material representations often constituted interruptions to common, majoritarian
narratives about AS. In doing so, I argued how several of participants' representations
served as counter stories to deficit-based narratives deriving from the DSM that position
individuals so labeled as (in no particular order): 1) deficient in their ability to connect
socially with others; 2) lacking in the ability to imagine and create; 3) lacking the
capacity to appreciate humor; 4) inflexible, rigid, and dependent on routines and
predictability; 5) deficient in the ability to engage relevantly; 6) lacking the ability to take
the perspective of others (attribute a ToM); 7) emotionally blunted and stiff; and 8)
deficient in the ability to engage in areas that veer from their particular interests, and as
such, driven toward "obsession."
While I argued that many of the participants' narratives constituted counter
stories, I also paid heed to the value of attending to local, context-specific narratives
when they did not appear to do so. Aligning with Solórzano and Yosso (2002), I placed
value in highlighting epistemologies that have historically been marginalized, and
regarded instances wherein participants' insights seemed to constitute "minority
majoritarian storytelling" (p. 28) as contributive to holistic portraits. These contributions
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are regarded as meaningfully as are those that counter common conceptions, and inform
an understanding of the ways that students integrated the powerful, prevailing narratives
about AS in which they were culturally submerged.
Multiple Case Analysis
In this chapter I consider the three data chapters in conjunction, providing a
multiple case analysis through a discussion of the diverse ways in which the participants
represented themselves in light of the eight aforementioned majoritarian narratives. I then
move to a discussion focusing on ways that participants' representations inform an
understanding of what it means to be a high school student labeled with AS. I conclude
with implications for this research in terms of the scholarly literature and for educational
practice.
1 . Social Engagement
The participants illuminated a variety of manners of social engagement. Susan
iterated throughout the study the significant role that her trusted friends, peers, and
teachers played in her ability to find meaning in school. Further, she cited the fear she
felt of losing ties to people that she had become close to over the four years of her career
as a high school student. Her ability to connect with others was evident in several
contexts, including during her walks down the hallway in between classes and after
school; during lunch hour when hanging out with friends and discussing a variety of
subjects, and in classes that integrated informal participation structures. Additionally, she
discussed at length relationships between herself and several of her teachers, such as the
one with whom she shared an ongoing conversation about Toxic Audio, and in doing so
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instated the significant value she placed on connecting with others, and especially
locating a sense of personhood.
Alex's social engagement was most evident in the context of playing videogames,
wherein he emerged as a leader of sorts, one who attracted several students who were
interested in learning videogame-playing strategies. As a student who held status as the
"best" at videogame-playing, Alex discussed the significant byproducts ofthat status,
particularly alluding to the roles of power and respect in his ability to illuminate his
competencies, in his own mind as well as in the minds of his peers. His attitude on
socialization wavered between appreciating having garnered a "little" power and respect
and downplaying its importance, particularly evident in his assertion "I'm willing to
admit, I'm not a team player, at all. But that's just how I am." In his acceptance of the
reality that he was not a "team player," Alex iterated the relatively low priority he placed
on striving to become more collaborative in that way.
Victor struggled to integrate his own preferences and propensities with those of
his mother's and his teachers' in the context of "being social." He engaged
wholeheartedly in classes, volunteered more than any other student, and initiated
conversations amongst his classmates and teachers readily and consistently. Likewise, he
introduced me to a variety of his teachers in the beginning of our work, and collaborated
regularly with Anthony in class projects and activities. His reference to a number of
friends, including Charlie, Anthony, Devon, and Nate indicated his history of having
close friendships as well as what appeared to be recently-resolved contentious relations
with peers. Victor asserted that he preferred to be left alone and "condemned" in certain
situations commonly understood as prime opportunities for socializing, such as during
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after school hours. Further, he began eating lunch with his peers only after heeding
others' encouragement to do so. In school, he energetically engaged with others in
singing songs, reenacting scenes from movies and television, and reveled in his selfdescribed role as "a god of laughter" who enjoyed entertaining others.
The three participants thus constructed diverse portraits of social engagement, and
although their styles did not always conform to traditional conceptions of "appropriate"
social engagement, all evidenced competency in their ability to connect with others in
ways that were meaningful and relevant to their lives. Their social abilities were
supported and curtailed by contextual features, as is the case with any human being.
2. Imagination and Creativity
The participants' ability to engage creatively and with imagination can be gleaned
across all data sources. Victor's story The Jack Chronicles, Susan's piece on HPLC, a
sequel to an original piece written two years prior, and Alex's "Twins" project all
illuminate instances of original thinking. Likewise, Alex's discussions of "Sky City," the
many things he thought about in tandem with participating in "boring" classes (e.g. how a
rotary engine might work), and his musings on war and weaponry evidence a strong
ability to imagine. Victor's frequent reenactment of scenes with vivacity and attention to
detail (evident in features such as accents he used to convey different characters), and
Susan's adept ability to take on the persona of characters in her acting classes as well as
architecting a costume based on the concept "god must have spent a little less time on
you" also highlight imaginative abilities.
The participants' written work showcases their endeavors to be in Susan's words,
"as creative as possible." Alex's creative writing piece on methamphetamines, Victor's
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Transformers illustration and essay from the standpoint of himself as a 99-year-old man,
and Susan's Great Depression and Temple Grandin pieces are further examples of work
that engaged their creative capacities. Creativity can also be understood in the many
ways that the participants cultivated positive and healthy identities for themselves
through the employment of their strengths, and often in spite of encountering adversarial
messages about their ways of being. Alex's ability to construct an understanding of
himself as competent centered his videogame-playing prowess, and was cast against a
backdrop of past (and ongoing), repeated contentious experiences with his peers.
Victor's ability to understand himself as a good writer evolved across at a minimum, the
school year, wherein he traversed frustration and doubt, noting that he had "no idea what
an essay is" before arriving at strategic ways to approach the subject. Acquiring the skills
to work through what initially seemed a daunting, ambiguous undertaking seemed to
mitigate his frustration, an important step in route to success. Susan's persistent and
dedicated approach to memorizing lines and staying "on top of her college applications
and preparations informed her eventual successes in gaining admittance to both schoolbased productions and her first-choice college.
Imagination and creativity were inextricably linked to participants' interests,
goals, and propensities, and were qualities that each regarded as having enriched their
schooling experiences in multiple ways.
3. Humor
Each participant engaged humor during the course of the study, although their
expression of this quality differed vastly. Alex was inherently funny in his approach to
conversing, wherein his adept ability to catch his mishaps amused both of us. His humor
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thus simultaneously elucidated a quick mind and an ability to laugh in spite of himself.
Likewise, he found outrageous situations humorous, sometimes darkly so, and evidenced
this side of his personality when sharing about the time he vomited in class and "finally"
got the privacy he craved. Also, although he noted the unfortunate "side effects" of
teasing his friends (such as the "sheer terror" he imagined they must have felt) by flailing
a knife at them in an act of retribution for money they had taken from him, he also found
the incident "funny." Teasing was a form of humorous entertainment that Alex seemed
to engage fairly regularly, as seen also in the incident wherein he took Annika's jacket
and for awhile, and refused to give it back to her, despite her pleading that he do so.
For Susan, humor reflected her propensity to connect with others. She referenced
humorous qualities of particular teachers that she found to be especially evident of their
personhood. One such teacher was her math teacher, who joked, for one, how writers of
the standardized high school exams went into a big room to "smoke a lot of crack."
Likewise, she identified comedy-based shows hosted by Stephen Colbert and Jon Stewart
as appealing in their ability to "entertain" as they engaged political issues. Susan also put
herself in the center of humorous situations, such as when she wrote herself into the
HPLC book, wherein she presented herself as swooning over a very indifferent Paul of
Toxic Audio. Likewise, her design and construction of a Halloween costume around
song lyrics enabled her to dress up as someone whom "god must have spent a little less
time on," an ensemble that prompted her classmates to "crack up."
Victor described himself as one who had the capacity to make others laugh, as he
noted that he wanted to sing for his class "... because I wanted to make them laugh I
think. I have a talent for that, it's a gift. . .Fm like a god of laughter." His scene
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reenactments and visual (re) productions of scenes (such as those completed on the
computer using dialogue bubbles) were laced with humor and revealed in the dramatic
accents he used to convey different characters and the hearty laughter that accompanied
his buoyant reproductions of scenes from The Honeymooners and Talladega Nights. He
described several of his friends and movies as "hilarious" and sometimes even "flat out
hilarious." Victor's humor was equally evident in his creative writing work, such as in
the instance where he wrote about spreading mayonnaise on a cake in lieu of
conventional frosting. He expressed an appreciation for audacities, and for humor that
might be described as "slapstick."
The diverse ways in which participants represented their appreciation for and
engagement with humor highlight the unreliable and misleading nature of assuming that
all students labeled with AS experience humor in the same or even similar ways.
4. Participatory Preferences
Students' thoughts on participatory structures included an appreciation for routine
at times (e.g. Victor liked certain routines associated with going home), but
overwhelmingly they represented how they preferred participating in ways that entailed
spontaneity and included elements of freedom from rigid expectations and a sense of
openness to collaborating with others. Victor spoke about his appreciation for
collaborating with Anthony and identified three particular classes—Gym, Science, and
Study Hall— as his favorites, each which diverged from the predictable nature of the
majority of his classes by virtue of engaging him kinesthetically and/or socially.
Alex's favorite class was Art because it represented a period where he could work
on projects that had relatively loose parameters. The boredom that he felt in most of his
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classes led to his honed ability to "multitask" and likewise set the stage for his propensity
to "faze out" in contexts wherein participation structures were strictly defined (such as
those that required students to sit, listen, and take notes on teachers' lectures). He reveled
in time spent playing videogames, such as lunchtime, and liked how both lunch hour and
Study Hall afforded him the opportunity to "reduce" the amount of homework he would
need to take home. Alex's participatory preferences thus centered both his interests in
getting homework done and in practicing videogame-playing. His preferences
additionally centered on his ability to infuse his interests (e.g. in building construction)
with required work, as revealed in Art-based projects. While some of Alex's daily habits,
such as practicing videogames during lunch hour (and getting in a very bad mood if he
was not able to do so) might be interpreted as evidence of a need for routines and
predictability in the course of his day, attending to these "needs" did not appear to cause
him harm or detract from his ability to meet an array of school-based goals. His apparent
reliance upon a few stable features within the course of his school day is thus effectively
no different than the need other students (labeled disabled or not) have for stable
components in their days.
Susan stated a preference for classes that felt more "casual" than the structured
nature of most of her academic classes. Most of the classes that engendered a feeling of
informality were within the realm of her drama courses wherein spontaneity was a
common feature. Thus, many of Susan's classes seemed to require that students develop
a tolerance for ambiguity, as lessons, plans, and agendas changed on-the-spot. Susan
noted how she found challenge to be a meaningful component in her ability to stretch
herself as "an actor" and as "a person." Thus, she regarded being pushed out of her
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"comfort" zone to be an integral feature of personal and professional growth. Her
descriptions of particular pieces of academic work highlighted how fusing her interests
with new material catalyzed meaningful engagement with assigned work, as she noted: "I
like the creativity. . .1 like that I could take something that I was learning and compare it
to modern things that are a part of my life."
While the three participants seemed to uniformly reject, in their actions, words,
and representations, the notion of being tied to rigid routines and predictable expectations
for participation, there are instances where they appear to appreciate stable components
of their day. Nonetheless, each of the three revealed how they were able to flexibly
navigate the multiple demands and changing contexts of a given school day. Thus,
adherence to particular habits and routines seems negligible in light of the competencies
each revealed. In fact, adhering to particular habits and routines often seemed to reinstate
students' ability to engage in school overall with revitalized or heightened awareness.
Such appears to be the case with Alex who mentioned how getting to play videogames at
lunchtime allowed him to alleviate feelings of anxiety. Likewise, Victor noted how
drawing provided him a way to experience a "yearned for" sense of "freedom" from the
monotony of daily academic tasks and how listening to music on his way home offered a
moment of escape from a long (and sometimes difficult) day at school.
5. Relevancy
Susan, Alex, and Victor illuminated the ability to engage with relevancy on
several occasions throughout the research. The articulate verbal contributions that Susan
offered during her Government and Drama classes, as well as the many topics she
traversed during her lunch hour with friends are examples of such instances. Further
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instances were revealed in Victor's frequent voluntary responses to teachers' questions,
contributions to class discussions, and questions he posed in light of uncertainties.
Alex's skills at multitasking did not deter his ability to make relevant remarks when
called upon despite the reality that he also entertained other trains of thought. Further,
his musings on vintage versus modern cars provided yet another example of the manner
in which he engaged relevantly, though I did not immediately understand the situation as
such. Upon rereading the data, I realized that his seemingly tangential discussion about
cars was reflective of our conversation around reality-based math problems. Thus, I did
not initially recognize his contribution as relevant because Alex was not discussing an
instance directly relating to his math class. As iterated earlier, his musings were
infinitely more meaningful from a qualitative standpoint, as they provided an opportunity
for me to understand his capacities as a mathematical thinker.
Beyond these concrete instances wherein participants contributed relevantly to
what was being asked of them (by teachers, by me), each portrayed themselves,
holistically speaking, as progressing toward goals and cultivating identities for
themselves in ways that reflected and integrated issues and features relevant to their lives
at a particular point in time. Victor heeding his teachers' advice to eat lunch with his
peers for instance was a response to an apparently strong force he felt that beckoned him
to modify his current manner of engagement. Though it was not his original idea to
change his lunchtime engagement habits, he did integrate this change into a conception of
himself as a "social guy." The issue of "being social" was important to Victor and
significant in his life as a new high school student. As such his responses to teachers'
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suggestions and the integration of being a "social guy" into his identity were reflective of
an issue relevant to his life at that moment in time.
Likewise, Susan's long-standing goals, such as getting into a school show, were
relevant to her future goals as a professional actor and performer. The many preparations
she engaged as part of the process of gaining admittance to college further evidenced the
manner in which her goals and actions were relevant to her life as a soon-to-be high
school graduate. Susan also described an important feature to her meaningful
engagement in school: that classes and assignments bear relevancy to and currency in her
life. Her attitude toward learning about politics in light of current (presidential) elections
was directly tied to the very real circumstance of her upcoming eighteenth birthday and
thus getting to vote for the first time ever.
Alex's appreciation for his newfound power and respect was a relevant response
to years of having his interests and strengths belittled by his peers. The capacity to be
understood as competent was realized through his expertise as a videogame player, a
reality that might not have been given different historical circumstances (i.e. had
videogame playing not been a contemporary cultural phenomenon).
6. Taking the Perspective of Others
The ability to attribute a ToM, or take the perspective of others, was revealed by
each participant in creative and interesting ways. Susan's keen ability to identify teachers
with whom she could relate, such as the drama teacher she shared tissues with, elucidated
how she was able to understand their perspectives and to empathize with their
vulnerabilities. Likewise, she underscored how she could perceive others' intentions
during particular interactions. For instance, her observation that a peer's apology in light
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of teasing her about a hat she wore was disingenuous was highlighted in her comment
that "...it was kind of clear that he was only doing it because he was kind of pressured
into it." Susan's references to others' states of mind throughout the study were
numerous, and were traceable back to her earlier years as an elementary student, wherein
she wrote from the perspective of Temple Grandin. Illuminating more recent work, she
demonstrated Paul's state of mind via a drawing in her HPLC assignment. In doing so,
she cast Paul as indifferent to her character's overwhelmingly conspicuous affection.
Victor shared how in considering whether or not he should sing a song in front of
me during his Study Hall class, he perceived that there were a number of ways I could
have interpreted and responded to the song's "inappropriate words." Further, Victor
portrayed the main character of his short story, Jack, as a person with a state of mind
separate from his own. He used writing devices such as italicizing to indicate Jack's
inner thought processes. Another piece of written work that indicated Victor's ability to
attribute a ToM was his essay from the perspective of his 99-year-old self. Although he
was writing from the perspective of himself, Victor had to create events in his imagined
future life in order to portray a person that he had not yet become. Further, even details
of the story that supposedly reflected his past were based of fiction, according to Victor.
Thus, his 99-year-old self was a completely different person than he.
Alex's astute articulation of his school's social hierarchy, and his place within it,
revealed one way that he took the perspective of others. He noted how others saw him as
someone they did not easily remember, as he imagined them saying, "Who is that again,
over there?" He also illuminated the ability to perceive others' thinking in his claim that
flailing knives at his friends "was sheer terror and it was scary but from my point of view
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it was funny." His discussion about how "not everyone likes apple pie" in the context of
his class' engagement with the novel The Color Purple is an additional instance where
Alex displayed the ability to attribute a ToM to others. Specifically, his metaphor was
used to illustrate the reality that although he did not care for the novel, others in fact did.
Alex also shared how people often confused him and discussed this at one point in
terms of his lack of understanding of Annika, a young woman with whom he shared a
relationship based on mutual teasing. Thus, it may not always have been easy for him to
comprehend others' states of mind, but arguably it is difficult for any of us to do so given
particular circumstances. One such circumstance that many might relate to is
adolescence, a period of time when socialization and thus a heightened awareness of the
thoughts of others and of the way one imagines others perceive him/her becomes a
prominent feature.
7. Emotional Engagement
Participants' emotional engagement took the forms of humorous expression and
thoughtful declarations or expressions of affection and/or affinity. It also took the form
of exposing vulnerabilities, aggravations, and frustrations. Participants' insights and
actions around emotional engagement served to deepen understandings of issues they
seemingly held close to their hearts. Often rooted in their histories, these issues also
permeated into their current lives. While each participant shared many ways of
emotionally engaging in school, it would be remiss to judge their emotional responses as
somehow "deficient" or "inappropriate." Rather, it seems more constructive (and
frankly, respectful) to regard their manifestations of emotion as relevant to their lives as a
whole—that is, in light of the multiple demands that they contended with in earlier years,
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that they negotiated in the current time, and that they anticipated having to endure well
into the future.
Alex's disillusionment with his peers traced back to his years as a young child
starting school. Classmates taunted him and teachers seemed threatening. He felt unsafe
in his home as well as on the "street." His overwhelmingly negative experiences with
peers early on were punctuated by a relationship with his mentor and friend, Mario, who
represented a light in an otherwise dark space. As a high school student, Alex regarded
his peers with caution, and generally felt relief, such as in the world of videogames, when
he did not have to deal with human emotions. Indeed, he shared, "You know what's
awesome? In video games, when you beat someone you can say they suck and you don't
have to worry about how they feel." Detaching emotionally seemed to serve a purpose of
preserving a sense of safety, of psychological and physical wellbeing.
Victor's ongoing frustration with certain issues, such as struggles to get along
with particular others and integrating new skills into his evolving academic repertoire
were often met with grunts, head banging, and other physical manifestations of emotion.
With the help of dedicated teachers and lots of practice using new skills, he was able to
improve upon his abilities in many areas of frustration. Learning how to tackle a multipage essay through the employment of trustworthy strategies and how to get along with
peers who represented difference from himself through an exploration of topics around
racism and bigotry were two specific ways that Victor learned to mitigate the
emotionally-charged manner of responding to novelty and ambiguity.
Susan's early years in elementary and middle school taught her that although
important, friendships can be bittersweet, and she carried this lesson with her as she
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began to ponder the transition from high school to college. The emotional connection she
felt with her peers and teachers was borne of four years' worth of ongoing
communication, collaboration, and general trust-building. She was having difficulty
thinking about letting go of all of the well-earned rapport that had cultivated as a result.
Other forms of emotional engagement can be seen in pieces of work, ideas, and
interactions the participants represented as well. Upon finding out about a new Wii game
that was coming out, Alex's mood became noticeably spirited, and he found occasion to
engage with his peers in conversations around this exciting topic. Susan's illustrations of
herself swooning over Paul, her discussion of the admiration she felt for Temple Grandin,
and her identification of teachers who "clearly loved" or "cared" for their students
indicated other facets of her emotional engagement and expression. Likewise, Victor's
declaration of Anthony and of the movie Talladega Nights as "flat out hilarious"
illuminates how he used humor as a form of emotional expression, and his description of
Devon as a "sweet kid" reflects the affinity with which he regarded his friend.
8. Engagement of Interests
Students' engagement of interests ranged from Victor's inclusion of drawing
within the course of a typical school day and his enactment of favorite movie and
television scenes; Susan's dedicated stance toward honing her craft (acting and
performance) partially in preparation for future events and integrating her interest in
drawing into assigned projects; and Alex's dedication to spending 90 minutes per day
playing videogames and his development of "Sky City," a project that evoked his
interests in both computers and architecture.
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While these examples are but a few of the many ways the participants infused
their interests into their school-based lives, they represent how engaging each interest
worked to enrich, as oppose to detract from, the quality of each student's meaningful
engagement in school. Indeed, even in situations where it was deemed by school
authorities "off limits" to engage in particular activities that held inherent interest to
students (such as Alex playing videogames during lunch hour) students found ways to
navigate around the potential pitfalls that lurked. Alex was acutely aware of his
headmasters' attitude toward videogames, and thus he was discrete in the way he engaged
in that activity. Likewise, although drawing might be understood by some teachers as
distracting or indicative of a nonproductive use of time, Victor engaged heartily in
drawing during many class periods, and doing so did not appear to deter his ability to
complete assigned work.
Rendering the engagement of interests, even those that students engage
habitually, as "obsessive" takes on a tone of psychological impairment. The term
"obsessive" or "obsession" connotes a sort of imbalance, an /«ability to keep one's
priorities in check, an inability, even, to attend to the world outside of one's specific
interests. It is for this reason that I illuminate the productive, constructive, and overall
level-headed manner in which all three participants engaged their interests. While Alex
insisted on playing videogames, despite authorities' opposition to it, he used the time as a
productive way to blow off steam, to reset himself after having endured half a day's
worth of overwhelmingly boring classes. His playing did not get in the way of his ability
to excel as a student in many ways, namely academically. In terms of social engagement,
Alex's videogames helped him to carve a niche wherein he could be understood as an
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expert, and as such, he garnered "alliances'Vfriendships/social connections in the process
of "teaching" others strategies.
And indeed, Victor fervently illustrated action figures throughout the course of his
day, yet instead of derailing his attention from school-based work, the habit allowed him
"yearned" for moments of "freedom" from ongoing structured seatwork. His scene
reenactments served to reinforce several of his friendships, and enabled him to connect
with others via humor and dramatic play. Finally, Susan seemed to have the good fortune
of getting to live her interests in performance and acting, in creatively expressing herself
in general. Her high school was one that centered so many of her interests, and thus her
time spent engaging those interests was understood as productively progressing toward
her goals and dreams. Thus, her environment seems to have made it easier for her to
engage her interests in a way that appeared an effortless fusion of her own propensities
and the values represented by the school. Again, it is worth reiterating how attending to
her interests enabled Susan's successful acceptance to college and the opportunity to
collaborate in a school-based production.
Discussion: Engaging in High School with a Label of AS
In this dissertation, I have worked to disrupt the idea that characteristics
associated with AS are evidence of deficit. Working from the DSM-IV-TR (2000)
definition of AS as a series of impairing conditions and locating common, majoritarian
narratives that I conceptualize as a reification ofthat "official," "clinical" definition, I
have specifically focused on attending to the ways that three individuals labeled with AS
provide counter stories to said common narratives. This process has enabled my ability
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to portray students as complex individuals who demonstrate a vast array of competencies
despite what their label tells about them.
The analyses thus far have illuminated the myriad ways in which the participants'
ideas, representations, and actions at times counter and at other times conform to
common understandings of AS. In presenting students holistically, I have challenged the
assumption that by virtue of their characteristics they are in need of remediation. In the
process, I have asserted the issue of relevancy as a way to conceptualize how students'
engagement with majoritarian narratives (whether it countered or conformed to those
narratives) reflects their histories, values, interests, and propensities. Thus, I have argued
that instances of conformity are indicative of bearing relevancy to students' lives as
opposed to signifying constitutional deficit, an assertion that correlates with Protagoras' s
observation that "no one thinks falsely" (as cited in Goode, 1992, p. 197). This sentiment
serves as a reminder of the significant roles of context and perspective in interpreting the
ways individuals engage their worlds.
I now turn to a discussion on the ways that the findings contribute to knowledge-
production on AS and schooling, and outline ways that this knowledge, as distinct from a
predominant or sole reliance on common narratives rooted in the DSM and reified in
scholarly literature, can inform scholars' and educators' deeper understandings of what it
means to engage in high school with an AS classification. Several points emerged upon
inductively considering the data as a collective "story": a) integrating interests; b)
learning through trial and error; c) asserting competencies; d) offsetting boredom and
predictability; e) engaging struggle; and f) employing multiple participation structures,
strategies, and methods. Each point represents an issue the participants contended with
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as part of the process of dealing with the various demands of high school and especially
in their efforts to construct identities that reflected their competencies.
Integrating Interests
First, the data highlight how the students in this study integrated interests into
their school-based lives. Each of the participants iterated their commitment to fusing their
interests with school endeavors sometimes despite contextual features that worked
against their freedom to do so. Further, each iterated the ways in which engaging their
interests enriched their in-school experiences. Alex's conviction to play videogames
despite the school rule against doing so highlights how he found ways to creatively work
around this limitation, and in doing so progressed toward his goal of playing for 90
minutes per day. While they did not contend with contextual features that inhibited their
ability, Victor and Susan likewise attended to activities that engaged their interests,
namely drawing and acting/performing, and each reported the many forms of enrichment
that followed (for Victor, it meant recharging after enduring seatwork; for Susan, it meant
progressing toward and meeting goals associated with being a performer). WinterMessiers's (2007) contention that if we deny students labeled with AS the freedom to
engage their interests in school contexts, "we are forcing them to leave themselves at
home" (p. 149) rings true in light of students' representations around this issue.
Learning Through Trial and Error
Second, the data highlight how the students in this study learned through trial and
error about how to be in relationships with others. While each participant demonstrated
competencies in socializing given different contexts, each also stated their frustration
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with aspects of socialization. Susan referenced early experiences with students who
teased, misunderstood, or otherwise confused her. While she regarded those early
experiences with mixed emotions, they informed her ability to maintain and discern
important features of friendships, such as trust, shared history, and common interests.
Victor and Alex likewise relied upon early experiences to inform their current
understanding of what it meant to be in relationships with others. Victor's long history of
having a "best" friend likely colored his optimistic stance toward ongoing and budding
friendships. Alex's history taught him to be leery of his peers and thus he maintained his
distance from them. Newer experiences were also integrated into their social identities—
for Victor, this meant dancing the line between attending to his own wishes (for social
isolation in some instances) and attending to the goals that others encouraged him to
meet. For Alex, it meant taking on the role of "leader/teacher" to a subset of his peers that
were interested in learning his videogame-playing strategies.
Students all learned how to be in social relationships by engaging with people in
their communities: their peers, their teachers, and their families. Interestingly, none
reported the use of social stories or other prescribed or curricular-based social skills
lessons as integral to their ability to learn what it meant to be in the social world with
others. In fact, prescribed social lessons were not brought up by the students at any point
in the research. Their ability to make sense of the social aspects of school, to find ways
of being a member of a high school community was thus largely attributable to their own
creative means of navigating. The reality that each learned how to be a member of a
social community by engaging, sometimes to discouraging ends, with their peers and
others in their communities hearkens back to Gustein and Whitney (2002, as cited in
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Elder et al., 2006) who cite the importance of authentic experience-sharing in the
cultivation of social abilities.
Asserting Competencies
Third, the data highlight how the students in this study worked to be understood
as competent: Often times that meant having to abet others' ability to understand them as
such. For Susan, Alex, and Victor, this meant that at times they challenged assumptions
that others made of them, and at others, conformed to definitions of "success" as
acknowledged by their school culture. Alex's description of a reality-based math
problem informed my ability to understand him as a mathematical thinker. While at first
appearance, it seemed that Alex was veering tangentially off-topic, on closer look, it
became clear that he was indeed contributing to the topic of math, albeit in a way that
made more sense to him and reflected his interests. Goode's (1992) discussion on
Bobby, a man with Down syndrome, bears relevancy here. Goode notes how initially, he
regarded Bobby with a "clinical" lens, thus many of Bobby's interactions with others
appeared to affirm his inabilities. Upon further analysis and a frank discussion with
Bobby around particular interactions, Goode realized the relevance of Bobby's actions
given contextual features. While on first glance, Bobby appeared to be allowing the
facility cook to patronize and belittle him, on subsequent analyses Goode came to realize
that Bobby allowed for this to happen because he was gaining "special treats" (p. 206) for
complying. Thus, Bobby's actions indicated his competent ability to participate in a
relationship that served to benefit him and in many ways, enrich his life. Goode's
analysis serves as a reminder that in order to see individuals in terms of their
competencies, it is sometimes necessary to rethink original impressions.
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On another occasion, Alex challenged my assumption that energy output was
equivalent to enthusiasm or interest. In this instance, he asserted that his preference
irrefutably was in playing videogames over engaging in weight lifting, contrary to what I
had surmised based on his energy output and countenance in each of these activities. His
ability to successfully challenge a "common sense" assumption I made reminded me of
the unreliability of outward appearances in determining one's state of mind. In the
context of supporting students labeled on the "autism spectrum" in the classroom, Kluth
(2003) echoes the importance of remaining cognizant of this reality noting that
". . .teachers must always be acutely aware of behavior as an interpreted phenomenon.
Often, teachers misinterpret behaviors when students do not or cannot interpret their own
actions... and instead make assumptions" (p. 154). Biklen (2005) likewise referenced "a
misperception of appearance" when discussing how, upon interpreting his co-authors'
chapter contributions in the process of writing his book, he found that "as I read their
accounts, the notion of their being somehow disconnected from society made no sense at
all" (p. 256).
Victor's enthusiasm for taking teachers' advice to eat lunch with his peers
suggests that he recognized the value in changing his behavior in efforts to be readily
understood as socially competent. Similarly, Alex's conviction to maintain his status as a
videogame expert enabled his ability to be interpreted by his peers as one who was
worthy of "respect" and "power." Given the reality that Susan's successes could be
immediately recognizable as such, the ability to assert competencies may have been an
easier process for her, as she was engulfed in an environment wherein her deepest
interests were supported and shared by so many of her peers. Nonetheless, it could be
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argued that in choosing to apply for admission to and subsequently attend that particular
school in the first place, Susan identified an opportunity to engage in a community
wherein her competencies could be recognized as such, and where exceptional interest in
a particular area (drama, performance) was a quality embraced by the school as a culture.
Reaching further back into her educational history, it is also possible that by virtue of
Susan's consistent attendance in public schools wherein she was mainstreamed, she
began cultivating the skills necessary to reach successes expected of general education
students. That is, by virtue of being mainstreamed, it is possible that Susan aligned her
goals with those of her peers, with and without labels of disability. Each of these
instances highlights how the participants made choices that positioned them to realize
their competencies despite the deficit-based assumptions made about them by virtue of
their disability label.
Offsetting Boredom and Predictability
Fourth, the data highlight how the students in this study offset boredom or
predictability. Often citing disinterest or weariness at the monotony of seatwork as
responsible for "fazing out," fidgeting "multitasking," and drawing, Alex and Victor
shared some of the creative ways they managed to stay engaged. For Alex, entertaining
multiple trains of thought enabled his continued interest in school, as did his dedicated
practice of videogames, and for Victor, encountering an element of "freedom" via
alternating seatwork with drawing was pivotal in his ability to sustain ongoing interest
during idle time spent in his seat.
Cultivating strategies and habits that enabled their ability to maintain interest calls
forth Vygotsky's (1983) idea of zpd, or zone of proximal development. The zpd refers to
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students' ability to learn beyond his or her current capacities through the help or
scaffolding of more capable others. As Ash and Levitt (2003) point out, students'
engagement in their zpd must be cultivated through "supporting contexts" (p. 26).
Interestingly, it appears that Victor and Alex engaged multiple means of heightening the
complexity of their engagement in classes that did not challenge their ability to stretch
their current capacities in any significant way. That is, while they were capable of
sufficiently meeting the expectations of their classes given their current capacities, they
were not being challenged in a way that beckoned the evolution of their potential beyond
those current capacities.
The idea that they engaged alternate means of engaging during many of their
classes as a way to further develop areas of personal interest bears significance in regards
to Alex's frequent contention that "You can't make something more interesting. It has to
be interesting from the start. . .It can't become." Thus, efforts to engage multiple
activities were often likely a response to a lack of interest in a given class or topic of
discussion. Contextual features that supported their ability to challenge themselves
manifested as teachers' approval for engaging drawing (Victor) and intellectual freedom
to engage alternate trains of thought (Alex). If Alex's teachers were aware of his
"multitasking" they did not take steps to quell this habit, in my observations. Alex's
capacity to answer questions when called upon seemed to satisfy teachers' expectations
for his intellectual engagement. Thus, while Alex and Victor seemed to tap into
contextual supports in challenging themselves to reach new capacities in given areas,
their growth appears to be a result of their own internal devices (e.g. creativity, ability to
mitigate boredom, etc.) rather than as a result of the direct, scaffolded support of others.
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While she asserted that she was comfortable in all of her classes, Susan noted her
appreciation for the quality of "variety" in her drama classes and that she found it:
...easier...to socialize in my drama classes...academic classes are... generally just
more structured, like there are a bunch of desks, and they are in rows, and we sit in the
same place every day, and we get out our notebooks, and the whole routine.
While Susan did not frame her classes as "boring" (she did not frame anything as such),
she did juxtapose the predictable nature of her academic classes with the "variety" and
looser parameters of her drama classes, qualities that were concurrent with her ability to
socialize with relative ease. The element of variety might then be understood as a feature
that enabled Susan's ability to sustain such a seemingly high level of interest in school
overall.
Describing her coursework as a whole, Susan represented her positionality as at
times within her comfort zone and at other times outside of her comfort zone. It thus
appears that Susan benefited from "contextual supports" in the form of challenging
classes (which included a number of teachers that challenged her in specific ways, such
as the government teacher who encouraged students to share their opinions regardless of
their political stance), ongoing new opportunities to participate in novel ways (e.g. in
school productions), and plenty of chances to practice and apply skills that enabled her to
constantly expand her current horizons and capabilities. Her experiences thus appeared
to represent how in working within her zpd, she grew as "an actor" and as "a person."
Engaging Struggle
Fifth, and as an extension of the previous discussion around students offsetting
boredom and predictability, the data highlight how the students in this study engaged
struggle and challenge as a means of personal and academic or professional growth.
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Again, Vygotsky's construct of zpd can be evoked as a tool with which to understand
how Alex, Victor, and Susan's engagement in struggle informed their ability to stretch
the limits of their current capacities. Victor's discussion about the struggle he engaged
around writing eventuated in his expression of improved feelings about writing as well as
improved ability to express himself through this modality. Further, he expressed surprise
in realizing that he actually enjoyed writing. While frustration represented a roadblock to
his ability to grow as a writer, through scaffolded engagement he learned to appreciate
the process and experienced a sense of pride in sharing the product of his creative
endeavors, a sentiment that was called forth in his statement that he was "the number one
publisher" of The Jack Chronicles. The primary "contextual support" in this case was
the scaffolding that particular teachers (his One-on-one teacher as well as his Writing
teacher) provided.
Susan directly asserted how a particular drama teacher presented her with
opportunities to work through areas that would eventuate in her becoming a stronger
individual. Again, she asserted that:
. . .when we're on the spot, we kind of don't really like that, but in the end, I don't
know about anyone else but, I know that it's a good thing that he pushed us. Um,
because if you just stick to where you're comfortable you're not really going to
grow as an actor or as a person.
Thus, she too benefitted from a teacher who scaffolded her movement through struggle.
Though at times uncomfortable, these interactions spurred her ability to realize new
capacities.
Alex shared how in order to be worth his while, a videogame "has to be long and
it has to be challenging." If games are too short (can be beat "in one sit-down"), they did
not represent an adequate level of challenge for him to progress toward his goals of
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improving his game. Though Alex did not benefit from teachers' scaffolding his
improvement in this area, he did employ contextual supports in the form of time and
space to practice his skills. Further, his knowledge of the headmaster's stance and policy
on videogame-playing in school enabled him to make choices that ensured his ability to
practice without having his game confiscated. In this sense, his knowledge of the
headmaster's stance and policy can be understood as a contextual support that led to him
to devise ways to avoid being caught, a process that enabled his ability to improve upon
his game, albeit in the absence of direct, scaffolded support of others.
Thus, each participant shared how instances wherein they engaged struggle they
experienced a heightened sense of their abilities. Although they also spoke about times
that they wished to avoid struggle, their insights around the constructive engagement of
struggle highlight how cultivating a zpd and employing internal resources- wherein they
are pushed or push themselves to engage tasks beyond their abilities- can work to instate
students' competencies.
Employing Multiple Participation Structures, Strategies, and Methods
Finally, the data highlight how the students in this study employed a wide array of
strategies, participatory structures, and other pedagogical methods to meet academic
success. Students' stated use for a diverse number of curricular opportunities evidences
the idea that there is no "one" way they approached meaningful learning. Victor shared
his appreciation for knowing specific steps to take in crafting an essay or piece of
creative writing, and he also cited the importance of getting to engage in collaborative
activities, such as team sports during Gym and singing with his peers during Study Hall.
He also placed value in doing hands-on work such as investigative work typically
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encountered in Science class. Alex shared how engaging in projects that were open to his
interpretation (i.e. constructing a virtual city) enriched his experience in Art class. On the
other hand, he also illuminated the usefulness of a tried-and-true strategy of taking notes
in the margins of a book when doing assigned reading work. He further highlighted the
benefits of keeping an "agenda" to organize his exam-studying schedule. Susan stated an
appreciation for open-ended projects wherein she could infuse her interests and in turn
evoke relevancy to her own life. She also paid tribute to techniques that worked for her,
such as memorizing lines well in advance of her performance dates. In addition, she
demonstrated how taking copious notes during class lectures and discussions aided her
integration of knowledge and preparation for exams, etcetera.
The variety of learning modalities and structures that the participants identified
makes it difficult to provide any generalization in terms of instructional features
appropriate for all students labeled with AS. Instead, their responses support the notion
that the main feature worth attending to is flexibility, which Kluth and Straut (2001) point
out is a pivotal feature in the process of providing meaningful and inclusive learning
experiences for the diverse students in our nation's classrooms, which are becoming
increasingly pluralistic. Further, Kluth (2003) points out how "In most cases, for most
people, school environments are more restrictive and less flexible than any other place in
which they will function as adults" (p. 76). She thus elicits the value of remaining
flexible in terms of setting up classrooms that invite various forms of participation. To
illustrate the point that many people take a circuitous route when engaging intellectual
work, Kluth uses her own writing regimen, a complex process that includes making
coffee, lighting candles, relocating for distinct purposes (i.e. editing), and taking frequent
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breaks, as an example. In doing so, she posits that educators might also provide a quality
of openness to students' diverse ways of participating in academic work.
Kluth's insights complement the many sentiments that Alex, Victor, and Susan
shared in the course of the study. Their various references to elements that constricted
and fostered their meaningful participation in school can be similarly conceptualized as
indicative of the degree to which their interests and manners of engagement aligned with
values and expectations of their classes and schools. In efforts to provide an example of
the power inherent to an alignment of values (between student and features of his/her
environment), it is worthwhile here to reference the multiple portrayals of imagination
that the participants contributed in the course of the study. While instances of their
imaginative capacities serve to interrupt narratives that position students labeled with AS
as deficient in this quality, they can also shed light on the contextual features that enabled
their expression. Biklen's (2005) observation that his co-authors' imaginative capacities
"become visible only when the authors can write about them and speak about them" (p.
270) is a keen reminder of the value inherent to providing the space and openness of
mind to cultivate possibilities for students' expression of creativity and imagination.
Susan's, Victor's, and Alex's creative writing projects and the insights they offered in
light of these projects spring to mind in light of Biklen's remark. Likewise, a
presumption of competence stance can be understood as a contextual feature that enabled
my interpretation of Victor's scene reenactments, for instance, as evidence of his
imaginative capacities. IfI had met Victor's behaviors with corrective eyes, in response
to using a clinical lens, I may not have interpreted his actions as imaginative.
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Interestingly, the ideas discussed here are not new to educators in general. Many
teacher educators working outside of the realm of special education/AS research have
asserted the need for learning and content to be inherently of interest, to pose adequate
challenge to inspire students' growth, and to represent an array of participation strategies
and forms of engagement (e.g. Dewey, 1990; Fosnot, & DoIk, 2001; Freiré, 1970, 1998;
Nieto, 1999, 2005; Tomlinson, 2001; Vygotsky, 1983), for instance. Such scholars point
out that when work in classrooms bears relevancy to students' lives outside of school,
students are able to discern the value of school-based learning and thus consider school a
meaningful place to be. Thus, despite what scholarly research within the field of AS
often purports as important to the education of students labeled with AS, the participants
in this study suggest that they thrive in contexts that are indicative of sound teaching
practices in general: that is, in contexts that support their growth while attending to their
individual propensities, needs, prior knowledge, values, and so on.
The various points that emerged upon considering the data as a collective "story"
highlight the value of attending to students' voices and working toward educational
equitability and democracy. I discuss these values next, in the context of implications for
this study on research and practice.
Implications of the Research
As illustrated throughout this dissertation, the participants represented as
meaningful school experiences those that fostered their ability to tap into interests, stretch
their current capacities, and learn through authentic experiences with others. Their
insights have implications that bear significance on research and practice. Now, in
response to the participants' contributions as well as my own observations and
interpretations, I position this work within scholarly literature on AS and schooling and
that which aligns with an interpretivist paradigm and is guided by a DS stance. I further
suggest possibilities for future research that authentically reflects and includes the
perspectives of youth labeled with AS. I conclude the chapter with a discussion on the
relevance of cultivating specific points of educational practice that support students'
meaningful, equitable engagement in school.
Contribution to the Literature
Toward the end of chapter two, I revisited the scholarly literature on AS and
schooling that approached countering dominant AS narratives. I highlighted that a
common and significant feature of those studies was the inclusion of student perspective
in the research and positioned this dissertation study alongside those studies with regards
to topical commonalities (AS and schooling) and in regards to engaging an ernie or
"insider" (Goode, 1992, p. 198) perspective in the research.
While most of the scholars reviewed in that section did not explicitly claim a
presuming competence stance (Biklen & Burke, 2006) or to disrupting deficit-based
narratives on AS, including the perspectives of students so labeled coincided with the
emergence of counter narratives, contributing conceptualizations of AS that underscored
students' abilities. The seemingly happenstance emergence of counter narratives lent
support to the idea that including students' perspectives can lead to an expanded
understanding of what it means to be labeled with AS.
Like many of the studies reviewed in that section, this dissertation answers the
call of scholars (e.g. Carrington & Graham, 2001; Humphrey & Lewis, 2008; Osier &
Osler, 2000) who have asserted the need for perspectives of students labeled with AS in
scholarly research, particularly in aims to strengthen and enrich their experiences in
school. Winter-Messiers (2007) and Winter-Messiers et al. (2007) stood out in this
section of review in terms of their explicit endeavor to disrupt deficit-based conceptions
of AS as derived from the DSM (and for all intents and purposes exerted a stance akin to
presuming competence). For this reason, this study most closely aligns with the
commitments and goals of Winter-Messiers (2007) and Winter-Messiers et al. (2007).
While these scholars focused on one particular area (special interests), in this dissertation
I engaged an inductive analysis of data that revealed several points of interest and
significance to students' lives in school. The engagement of interests was something that
each participant regarded as important to their lives and cultivation of identities, and as
such supports Winter-Messiers (2007) and Winter-Messiers et al. (2007) contention that
interests are in fact important to attend to.
However, within this study, other points of significance were identified by the
students as well. The quality with which the students discussed and represented these
points, such as offsetting boredom and predictability and engaging struggle, offered a
degree of nuance not typically encountered in scholarly work on AS and schooling. For
instance, often scholarly literature reiterates the idea that students so labeled are victims
of bullying, but offer little more than stating this reality before moving on to suggest
interventions or strategies of support. Stating that bullying is a common and prominent
feature in the lives of students labeled with AS is important and has led to discussions
about school-wide anti-bullying campaigns, for example (see Hay & Winn, 2005).
However, most scholars do not provide counter points to discussions on bullying that
might illuminate some of the ways that students so labeled contend with, resist, or
otherwise respond to these situations in meaningful ways (such a counter point is evident,
for instance, when Hay and Winn share how a student labeled with AS retorted to a peer
who called him "mental" by putting that peer in a head lock until he apologized). As
such, these students seem to be helpless victims, or passive recipients of others' taunting
as opposed to the active, engaged participants that they are.
While the participants in this study likewise attest to the role that bullying,
teasing, or taunting have played in their lives, they also demonstrate how they have
integrated these points of struggle in a process of learning how to be in the world with
others. Thus, rather than simply stating that they have been bullied or taunted, the
participants discuss contextual features of the incidents, give historical information to
flesh out their insights, and communicate how they have at times resisted, fought back,
and otherwise constructed identities in light of these tensions, past and ongoing. Thus,
through stories about struggles, Victor, Alex, and Susan underscore how they responded
to and co-constructed difficult circumstances that revealed their ability to interact with
relevancy, meaning, purpose, and therefore agency.
So, while this study joins with others that endeavor to include the voices of
individuals who are labeled with AS in scholarly work, particularly with aims to disrupt
deficit-based narratives that threaten students' ability to engage equitably and
democratically in school (and thus likewise their ability to construct healthy identities), it
also adds to the realm of interpretivist research guided by a DS perspective that
problematizes traditional (e.g. simplistic, deficit-based ) ways of conceiving of disability
(e.g. Allan, 1999; Kliewer,1998). Like studies that share interpretivist paradigmatic
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orientation, qualitative methodology, and DS conceptual framework, this dissertation
contributes renderings of AS that are more holistic than are traditionally portrayed in
scholarly work. Indeed, the students in this study represent diverse, contrasting,
conflicting, and thus authentic messages about what it means to be a student so labeled.
The diversity and contrast that characterizes their contributions evidences competing
narratives that each engages in the process of traversing the world with an AS
classification. These narratives are highlighted extensively throughout the data chapters
and are exemplified, for instance, in Victor's willingness to meet others' standards for
what is right for him (e.g. in terms of socializing during lunch) and Alex's assertion that
although he's not a "team player," "that's just how" he is.
While I couch this study as contributing to two camps of work: scholarly work on
AS and schooling and scholarly work engaging a DS perspective and an intepretivist
orientation, I also locate possibilities for future research. I discuss these ideas next.
Possibilities for Future Research
In light of the findings of this study, possibilities for future research include
exploring the experiences of students labeled with AS in inclusive settings, of diverse
demographic backgrounds, and in out-of-school contexts. Further, an imperative to
engage in collaborative research with individuals labeled with AS poses an opportunity to
reach levels of nuance, depth, and inclusiveness not typically encountered in scholarly
work.
Investigating inclusive contexts, out-of-school contexts, and students with diverse
demographic backgrounds. Susan represented her experiences in school as challenging,
inherently interesting, and relevant to her academic and professional goals. I have
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referred to the interaction between her personal qualities and the expectations represented
by her school as evident of Susan's ability to engage a zpd that supported her growth in a
number of ways. While Alex and Victor shared many stories and represented themselves
in ways that were indicative of their growth and ability to feel constructively challenged,
they also invented ways of using their (idle) time to keep themselves intellectually
occupied. These invented ways serve as a reminder of the creative means with which
they seemed to have taken an active role in inciting their progression toward goals. It
seems clear that Susan thrived in her school environment in a way that Victor and Alex
did not. As the latter two pointed out, they often looked forward to getting out of school
to go home or to take breaks in order to engage in activities that were more to their liking.
Further, they often cited finishing homework during school as a predominant goal. Susan
on the other hand cited goals such getting into school shows, preparing herself for college
interviews, and memorizing her lines in preparation for upcoming performances. Her
participation in school thus appeared more authentically engaged, representing a match,
or what Humphrey and Lewis (2008) refer to as a "goodness of fit," (p. 32) between her
values and those represented within her school culture.
However, it is not only the good fit between her interests and those of her school
culture that Susan likely benefitted from. It is also conceivable that she benefitted from
consistently attending school with diverse others (i.e. students with and without labels of
disability; students of diverse socioeconomic backgrounds) and being held to
expectations that her NT peers were held to. Inclusion in general education classes may
have begat Susan's richer educational experiences. In the interest of promoting
educational equity and with Susan's experiences in mind, it would be interesting and
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informative to better understand how students so labeled qualitatively experience life in
schools that are committed to promoting inclusive practices.
In the interest of gaining a fuller sense of the ways that individuals labeled with
AS interrupt dominant narratives, another avenue for further research would be to explore
students' participation outside of school contexts. In her case study on Jay, a young boy
labeled with Learning Disabilities, Collins (2003) demonstrates the benefits of observing
Jay in a variety of in-school and out-of-school contexts. Observing the ways that Jay
interacted in out-of-school contexts such as church and family functions allowed Collins
to see him in a competent light, which was sometimes difficult to do when observing him
in school, by virtue of structural and attitudinal factors that instated his status as
"disabled." Likewise, it would be informative to further the dialogue on the creative
ways in which youth labeled with AS engage their lives by exploring their participation
in out-of-school contexts.
In acknowledgment of the reality that the study does not attend to participant
identity features such as race, class, and gender, these points signify important avenues in
which to pursue further research given the existing data. In addition, and importantly, as
Victor, Susan, and Alex do not represent diversity in terms of socioeconomic, cultural,
ethnic, and national background, it would be informative to conduct an interpretive
investigation of the experiences and perspectives of students representing diversity in
these areas. Engaging interpretive research that investigates the intersection of AS and
schooling with these points of identity and diversity in mind offers the promise of
pushing current conceptions of students so labeled even further, toward constructively
complicating the meanings entangled in the construct "AS."
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One last implication for future research likewise offers the promise of expanding
conceptualizations about what AS "means." I discuss the imperative for collaborative
research next.
Collaborative research. In chapter two, I discussed Biklen et al. 's (2005) ability
to fuse two distinct literature genres: scholarly and popular (specifically,
autobiographical). Biklen et al. (2005) contribute a counter narrative to common notions
of what it means to be labeled with autism, namely that individuals so labeled are socially
isolated and "alone." In the sense that I too have endeavored, through an analysis and
interpretation of students' stories and representations of life in school, to contribute
counter narratives to essentialist understandings of AS, this dissertation has taken
guidance from Biklen et al. (2005). However, the co-authorship of Biklen et al. 's (2005)
text stands to contrast this dissertation in its collaborative approach. Collaboration thus
represents an avenue to pursue in future research on AS and schooling. In such work,
scholars address the problems I have stated in this study (a dearth of counter narratives in
research; a paucity of student perspectives in the research) by engaging students'
perspectives, an act that as discussed throughout this dissertation, often leads to counter
conceptions of what AS "means." Further, collaborative research, namely between NT
researchers and individuals who are labeled with AS, represents the promise of reaching a
level of nuance and depth not typically found in scholarly literature. In light of the
acknowledgment that student perspectives are valuable attributes to scholarly work
focused on the quality of life in school for these students, it seems imperative that at a
minimum, research includes their insights, but optimally, that they are included in the
writing and representation of the text.
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Collaborative research represents a move toward equitable, democratic, and
inclusive practices in scholarly work. Likewise, this study highlights the need for these
features in practice. I move now to a discussion on these implications.
Implications for Practice
In light of the study's findings, I assert the relevance of cultivating points of
educational practice that support students' meaningful, equitable engagement in school:
a) promoting educational democracy; b) assuming the role of researcher/ongoing data
collector; and c) differentiating instruction. In asserting the relevancy of these points of
practice, I work from the knowledge that U.S. classrooms are becoming increasingly
pluralistic (Kluth & Straut, 2001) and as such, students labeled with AS are being
educated alongside their peers with and without labels of disability at a higher rate than
ever before. Further, these points of practice respond to the previous discussion about the
need (asserted by scholars working outside of special education/AS) for school-based
learning to be accessible to students demonstrating a variety of propensities, needs, and
interests. Cultivating these three points of practice can thus position educators to provide
all students ample opportunity to be authentically included in class-based activities and
discussions.
Educational democracy. As an extension of Kluth and Straut' s (2001) ideas
around the necessity of flexible learning parameters in the face of an increasingly
pluralistic society, I turn now to an exploration of how democratic education can
encourage respectful and equitable attendance to students' unique knowledge and ways
of being. Collectively, the points that I attended to in the discussion section instate the
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importance of supporting students' abilities to develop their talents, stretch beyond their
current capacities, and assert their competencies.
In reflecting on Freire's message around democratic pedagogy, Aronowitz (1998)
notes that ". . .the educator's task is to encourage human agency, not mold it in the
manner of Pygmalian" (p. 10). Freiré (1998) illuminates how educators can work to
inspire human agency, referring to educational aims that support diverse students' growth
and inclusion as exemplary of a "pedagogy of freedom." He notes how qualities such as
listening, "rejecting discrimination," (p. 41) and showing a "respect for what students
know" (p. 36) are essential components of democratic teaching and learning. In an
anecdote that drives home Freire's stance of assuming that students are worthy of respect,
he reflects on a pivotal instance in his early life where a teacher's outlook made an
indelible imprint on his self perception.
Sometimes a simple, almost insignificant gesture on the part of a teacher can have a
profound formative effect on the life of a student. I will always remember one such
gesture in my life when I was an adolescent...At that time I experienced myself as an
insecure adolescent, not at home with a body perceived as more bone than beauty,
feeling myself to be less capable than the other students, insecure about my own
creative possibilities, easily riled, and not very much at peace with the world. The
slightest gesture by any of the better-off students in the class was capable of
highlighting my insecurity and my fragility.
On this occasion our teacher had brought our homework to school after correcting it
and was calling us one by one to comment on it. When my turn came, I noticed he
was looking over my text with great attention, nodding his head in an attitude of
respect and consideration. His respectful and appreciative attitude had a much greater
effect on me than the high satisfaction that he gave me for my work. The gesture of
the teacher affirmed in me a self-confidence that obviously still had much room to
grow. But it inspired in me a belief that I too had value and could work and produce
results—results that clearly had their limits but that were a demonstration of my
capacity, which up until that moment I would have been inclined to hide or not fully
believe in. (p. 45)
A teacher's commitment to interpreting students in terms of their competencies thus
represents the potential to inform students' sense of identity in ways that persevere
352
throughout their lives. The potency of Freiré' s message—that teachers are capable of
making enormous and lasting impact on students' identities—is all the more salient when
understood in the context in which it was written, at the end of Freiré' s life.
As an important element of resisting the modern push to transfer knowledge as
opposed to dialogically co-construct understandings, Freiré positions the teacher as
learner. Thus, education resembles a conversation, an ongoing dialogue amongst
students and their teachers, a process that engenders the abilities to listen and learn from
the perspective of others, as a learning community. Participation structures that engender
democratic learning experiences are discussed by Shor (1992), who firmly believes in the
power of dialogic participation over passive note-taking on teachers' lectures. He notes:
I think some [students] prefer to be lectured at in a way that avoids adjusting to new
social relations in the classroom. Lecture classes require less student participation.
They are less challenging than problem-posing dialogue. . .Lecture classes are easier to
sleep through or to do homework in because the teacher is not looking at students as
closely or expecting as much participation as in a discussion, (p. 158-159)
Democratic learning thrives on the engaged participation of all students. It is therefore
significant to note that in order to promote learning that is democratic and inclusive,
participation structures that enable dialogic interaction must be cultivated and infused
into pedagogical planning.
Students who are reluctant to participate dialogically or collaboratively (Alex
shared how he preferred working alone, for instance) can benefit from teachers who take
the time to learn about their preferred ways of engaging. Teachers who strive to
understand their students in a variety of contexts can gain a sense of features that
constrict and spur students' participation. With this "data" teachers can then move
353
forward to "intervene" (Freiré, 1998, p. 90) with an informed perspective and with an eye
toward sensitively considering students' propensities and wishes.
Teacher as researcher, as data collector. Shor (1992) asserts that "In the
classroom, the dialogic teacher researches the students to learn their themes, cultural
conditions, speech, and ways of learning" (p. 171). It seems imperative that in order to
foster learning experiences that are rich, meaningful, and thus relevant, educators must
take the role of researchers who "collect data" about their students in an ongoing way.
Goodman's (1978) notion of "kidwatching" is an example of a method that can be used
in efforts to work to understand students in natural settings (Hubbard & Power, 1993),
thus leading the teacher to holistic understandings of students' competencies and
struggles. While it is misleading to believe that all students labeled with AS experience
the same things, educators cannot expect to understand these students' wishes and
concerns without engaging them in dialogue, observing them in various contexts, and
noting their evolution over time. In the process of researching and revisiting original
conceptions, teachers can reexamine assumptions made about students in light of new
observations. Indeed, Freiré affirms the complementary relationship between teaching
and researching:
There is no such thing as teaching without research and research without teaching.
One inhabits the body of the other. As I teach, I continue to search and re-search. I
teach because I search, because I question, and because I submit myself to
questioning. I research because I notice things, take cognizance of them. And in so
doing, I intervene. And intervening, I educate and educate myself. I do research so as
to know what I do not yet know and to communicate and proclaim what I discover, (p.
35)
Thus, making a commitment to updating understandings of students in an ongoing
manner works against static (and often stale) conceptions of students' capabilities, and
instead encourages a posture of openness to interpreting students in new ways. Kluth
(2003) contends that "Educators must constantly be scouting for student talents and
seeking situations that highlight the abilities and support the needs of diverse learners" (p.
48). The role of researcher/data collector is thus evoked. She further suggests ways of
"listening" as a way of investigating ways to better understand students:
Another way teachers listen is by tuning into students as they work and socialize.
Teachers who participate in casual conversations at lunchtime or who "hang out" in
hallways can learn about students in more holistic ways. What makes students
excited? Worried? What are they knowledgeable about? Interested in? Afraid of?
Teachers may find keys to teaching and learning and discover ways to better support
students by listening carefully and respectfully during informal but important
moments, (p. 52)
Perhaps the most important reason for educators to assume a stance of researcher is
inherent in Biklen's (2005) statement that ". . .the outsider may tend to impose available
diagnostic narratives, but it is impossible to know how the other person experiences an
event unless he or she explains it" (p. 268). Identifying opportunities to revisit
assumptions and to "re-search" through dialogue and observation is thus a critical
component to cultivating learning contexts that reflect students' interests and enacting
new ideas based on that knowledge.
Differentiating instruction. By researching students and gathering "data" on
various components of their participation, teachers can use their newly gleaned as well as
evolving understandings of their students to "intervene." One concept that allows for
constructive intervening and that fits within a democratic educational context is
differentiation.
In the interest of engaging students in learning that is challenging, inclusive, and
open to infusing their interests and strengths into curricular goals, it seems clear that
355
instruction must be differentiated—that is, flexible enough to signify relevance to a
variety of students' propensities. Kluth and Straut (2001) assert that "A student cannot
and should not be expected to know and do exactly the same things as his or her peers,"
(p. 43) and Tomlinson and McTighe (2006) cite that the "primary goal" of differentiated
instruction "is ensuring that teachers focus on processes and procedures that ensure
effective learning for varied individuals" (p. 3). Participation structures, models of
teaching, and materials are all pedagogical elements that can be differentiated to foster
rich learning opportunities for students. Tomlinson (1999) cites several concrete
examples of ways in which educators differentiate instruction, including: a) basing
spelling tests off of pretests as opposed to a single "list" aimed at a particular grade level;
b) working with small math groups based on levels of current understanding and
comprehension, and alternating these small groupings with whole-class activities and
discussions; and perhaps of particular significance to students labeled with AS, c)
enfolding students' interests into curricular planning (pp. 1-2). Tomlinson believes that
giving students options based on their interests allows them to "have the chance to link
what they've learned with something that matters to them as individuals" (1999, p. 2). In
light of the centrality of interests in Alex, Victor, and Susan's ability to find meaning in
school, and in scholars' assertions of the prominence of interests in the construction of
healthy identities (Winter-Messiers, 2007; Winter-Messiers et al., 2007), this facet of
differentiation presents an opportunity to engage students in a way that is rich, relevant,
and respectful of who students are as individuals.
While differentiation is a way of teaching that is broad-based and encompasses
many different methods and strategies to foster growth in all students, it might aptly be
characterized as a form of pedagogical discipline that hinges on flexibility and a firm
commitment to providing equitable learning opportunities for all students that populate
our nation's classrooms. This is a distinct departure from pedagogical practices that are
based on the assumption that standards-based instruction is a "one-size-fits-all"
proposition and/or entail a top-down or banking model (Freiré, 1 970) approach to
teaching and learning. As Kluth and Straut (2001) underscore, meeting standards and
providing rich and equitable learning experiences for all students need not be mutually
exclusive endeavors.
As the students in this study assert in many ways, the drive to engage
meaningfully in school is an undeniable force that engendered their ability to find school
worthwhile in the first place. If students labeled with AS (and arguably all students)
cannot identify relevance or meaning in the many hours they spend in classrooms and
within school walls, they might find ways to construct meaning in spite of their
circumstances (e.g. as Victor and Alex appeared to do), or they may come to expect less
of themselves, and perhaps, as many scholars have suggested, become emotionally
distraught (e.g. Carrington & Graham, 2001; Carrington et al., 2003; Elder et al., 2006).
It thus seems imperative, if as a nation we are to prepare students for a future that
depends on their ability to think critically and engage democratically, that educators find
ways of ensuring that school is considered a worthwhile place to be from the perspective
of its most valuable stakeholders, the students. Again referencing Kluth and Straut
(2001), remembering that schools are becoming increasingly pluralistic, the term
"students" thus represents a multifaceted array of values, interests, and ways of being.
357
Collectively, the points of practice that I have outlined in this concluding section
offer teachers necessary tools to ensure that in working in pluralistic classrooms, students
with labels of disability are not relegated to the margins of the classroom (Kluth, 2003)—
a reality and common problem at the heart of contemporary education. Continuing to
articulate ways of constructing relevance and meaning in classrooms for students with
AS, and broadly disability, will be all the more democratic and inclusive if the views of
students themselves are brought to the table.
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Appendix A: Diagram of Student Involvement in IEP (Shore, 2004)
m
m
Student as
appropriate
to his/her
ability
From A guide to the individuai education plan program. (2002). Washington, DC: Office of Special Education
Programs, Retrieved on March 20» 2003, from http://www.ed.gov/offices/OSERS/0SEP/ Products/tEPJMde/
370
Appendix B: Field Notes Template from Marshall and Rossman (1999)
Date:
Time:
Observation
Observer's Comments
371
Appendix C: Informed Consent
Your daughter/son,
is invited to participate in an
educational study that investigates the ways in which students labeled with an autism
classification engage in a variety of school-based experiences. In this study, s/he will be
asked to participate in twice monthly interviews which will be audio taped and take place
off of school premises, in a location to be determined by your daughter/son and the
researcher. In addition, s/he will be observed in her/his school setting for the equivalent
of one semester, for periods of approximately 2 hours twice per month. Interviews will
consist of questions that reflect observations made during school observations and will be
open-ended in quality. An example of an interview question might be, "How did you
interpret the interaction between you and Mrs. (teacher) during science class when she
called on you to answer the question about parasites?" Audiotapes from interviews only
(taken place off of school premises) will be transcribed and used only by the researcher,
Carrie Snow.
Additionally, as her/his parent, your signature is requested at the end of this document
During this research, your participation is anticipated to be limited to helping your
daughter/son and I find appropriate and reasonable times to meet for interviews, if
necessary.
The data collection comprised of observational field notes and interviews will also
include artifact collections of school work or other educational material that your
daughter/son deems relevant to and representative of her/his experience in school. Such
artifacts might take the form ofjournal entries, school work, or art work, and may be
submitted to the researcher at your daughter's/son's discretion.
All names (e.g. participants, schools, personnel, organizations) and proper nouns will be
substituted with pseudonyms in this study. All data collected will be kept by the
researcher in a secure, locked space.
The research has the same risk students encounter during the course of a typical school
day, in the classroom or in a park or eatery (examples of places where interviews might
take place). The benefits of this study include:
1) educating others about the intersection between autism classification(s) and
school engagement
2) educating others about meanings students so labeled attribute to their experiences
in school.
In exchange for her/his time and participation, your daughter/son will be paid $15 and a
light meal for each interview s/he engages in.
372
The timeline of this study spans from August 2007- December 2007. Interviews will
span periods of approximately one hour each. To reiterate, school observations will
approximate 2 hours per visit.
Principal investigator (researcher): Carrie Snow
Title of the study/research: One Label, Many Representations: School Experiences of
Adolescent Students Labeled with Asperger Syndrome (AS).
1 I have read and discussed the Research Description with the researcher. I have
had the opportunity to ask questions about the purposes and procedures regarding
this study.
2 My participation in research is voluntary. I may refuse to participate or withdraw
from participation at any time without jeopardy to future medical care,
employment, student status or other entitlements.
3 The researcher may withdraw me from the research at his/her professional
discretion.
4 If, during the course of the study, significant new information that has been
developed becomes available which may relate to my willingness to continue to
participate, the investigator will provide this information to me.
5 Any information derived from the research project that personally identifies me
will not be voluntarily released or disclosed without my separate consent, except
as specifically required by law.
6 If at any time I have any questions regarding the research or my participation, I
can contact the investigator, who will answer my questions. The investigator's
phone number is (718) 398-2324.
7 If video and/or audio taping is part of this research, I ( ) consent to be audio/video
taped. I () do NOT consent to being video/audio taped. The written, video and/or
audio taped materials will be viewed only by the principal investigator.
8 Written, video and/or audio taped materials ( ) may be viewed in an educational
setting outside the research
( ) may NOT be viewed in an educational setting outside the research.
My signature means that I agree to participate in this study.
Guardian's Signature/consent:
Date:
Name:
/
/
Assent Form for Minors (8-17 years-old)
I9 ^___
, agree to participate in the study outlined in this document.
The purpose and nature of the study has been fully explained to me by Carrie Snow. I
understand what is being asked of me, and should I have any questions, I know that I can
contact Carrie at any time. I also understand that I can to quit the study any time I want
to.
Name of Participant:
Signature of Participant:
.
Witness:
Date:
Investigator's Verification of Explanation
I certify that I have carefully explained the purpose and nature ofthis research to
_____________, in age-appropriate language. S/He has had the opportunity to discuss it
with me in detail. I have answered all her/his questions and s/he provided the affirmative
agreement (i.e. assent) to participate in this research.
Investigator's Signature:
.
Date:
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