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Constructing identities in social worlds: Stories of four adults with autism
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CONSTRUCTING IDENTITIES IN SOCIAL WORLDS:
STORIES OF FOUR ADULTS WITH AUTISM
by
Nancy Bagatell
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE)
August 2003
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UMI Number: 3116662
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UNIVERSITY OF SOUTHERN CALIFORNIA
THE GRADUATE SCHOOL
UNIVERSITY PARK
LOS ANGELES, CALIFORNIA 90089-1695
This dissertation, written by
______________Mancy B a g a t e l l __________________
under the direction o f h e r dissertation committee, and
approved by all its members, has been presented to and
accepted by the Director o f Graduate and Professional
Programs, in partial fulfillment o f the requirements fo r the
degree o f
DOCTOR OF PHILOSOPHY
Director
Date A u g u st 1 2 . 2003
Dissertation Committee
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ACKNOWLEDGMENTS
Writing a dissertation is, in some ways, like the process of constructing identities.
It is not a solitary pursuit, but rather it involves many relationships. Therefore, I have
many people to thank for helping me along the way. First, I am incredibly grateful to the
participants in the study who so graciously allowed me into their lives. Their willingness
to tell their stories and their patience with me throughout made doing this research a
remarkably meaningful experience for me. I have not only learned a tremendous amount,
but I have made new friends in the process.
I wish to thank my committee chairperson, Dr. Cheryl Mattingly whose
intellectual creativity has greatly inspired me. Through classes and many discussions
with Dr. Mattingly, I have learned a great deal about what it means to be a scholar. My
committee members, Dr. Mary Lawlor and Dr. Ann Neville-Jan have provided
invaluable moral support throughout this process and have been wonderful role models.
The scholarly work of Dr. Donald Polkinghome has greatly influenced the writing of this
dissertation. All of faculty members of the Department of Occupational Science have,
over many years, challenged me to “stretch” my ways of thinking about occupation. I am
particularly thankful to Dr. Diane Kellegrew for her friendship and wise words and to Dr.
Jeanne Jackson, with whom I periodically have had the opportunity to discuss our
mutual interest in occupation and identity.
Also providing guidance and emotional support has been a community of fellow
doctoral students, including Esther Huecker, Pollie Price Lackey, Susan Spitzer, and
Bonnie Freeman, who, over the past couple of years have read many drafts, provided
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words of thoughtful feedback, and have been willing to just listen. I am also indebted to
Melissa Park, who has been willing to "play" with ideas with me and has provided
helpful words of encouragement.
One person deserves more gratitude than I can ever express. My partner-in-life,
Donald Holmes, patiently listened, challenged me to think more deeply, provided careful
editing, and helped me stay on course when I was unsure of my path. He ungrudgingly
allowed me the time and space to do this research, but also provided gentle reminders of
the importance of engaging in a variety of occupations, helping me maintain my multiple
identities throughout this process.
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TABLE OF CONTENTS
Acknowledgments .............................................................................. ii
Abstract ................................... vii
Chapter 1. Introduction. ...................................................... 1
Background to the Study ....................................................1
Why Identity?..................................................................................................4
Situating the Study Within Occupational Science.......................................6
Organization of the Dissertation ............................................... 9
Chapter 2. Constructing Identities.......................................... 12
Introduction .............. 12
Identities as Constructed in Social W orlds....................... 13
Identities as Constructed through N arrative................................. 17
Identities as Constructed through Engagement in Occupation..................23
Conclusion ..................................................................... 28
Chapter 3. Autism and Identity ............ 29
Introduction ................................................................................ 29
An Introduction to A utism ...........................................................................30
A Historical Perspective of High Functioning Autism...............................31
Diagnostic C riteria................................................................................ .33
Autism and Identity ........................................................ 35
Autism and Social Interaction ................. 36
Autism and N arrative...................................................... 41
Autism and Occupation ..................... 45
Questions and Queries .................. 49
Chapter 4. “It Must Be Interesting Studying Me”:
Methods and Dilemmas in the Field ................ 51
Introduction .................. - 51
Locating Participants ..................... 52
The Participants .............. 53
Learning from the Participants ................................... 57
Establishing Trust and Rapport ............................. 58
Participant Observation ...................................................... 59
Interviews........................... 60
Documents and Artifacts.................................................... 63
AACT: A Social D ram a ...................................................... 64
Other Dilemmas in the Field ................................................................. 68
From Data to Text ................................................ 71
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Chapter 5. Ben's Story .......................................................................... 75
Introduction ............................... 75
Eight Stories U p .................... 75
Getting There ..................... 77
Finding the 'Aspie' World ..................................................................... .82
The Challenge of Orchestrating V o ices....................... 92
Chapter 6. Mina's S tory................................................ 99
Introduction ..................................................................................................99
The Story of the Gypsy Autistic G ir l...................................... 99
Constructing Identity through the Enactment of Narratives.................... 105
Becoming the Gypsy G irl................................................................ 106
Learning About the Gypsies............................................. 106
Locating a Community ............................................. 107
Learning Rom any.............................................. 109
Living Like a G ypsy.................................................. 109
An Unforeseen Event ..................................................... 112
Revising the Narrative ......................... ................................. .. 114
Claiming Autism ..................................... . . . 115
Coming Full Circle .................................................. 117
Future Identities .............................................................. 120
Conclusion .............................................................................. 121
Chapter 7. Stewart's S to ry .................................................................. 122
Introduction .......................................................................................... . . 122
"From the Bottom of the H eart"........................................................ 123
"He Always Loved to Be on Stage".......................................................... 127
"Feeling Invisible" ......................................................................................129
Creating An Experience............................................................................. 130
Making Sense of and Communicating Experience .................................133
Becoming a Man: The Bar Mitzvah and other Religious Rituals ..........134
The Super Bowl Party: Crafting Collective Experience...........................137
"There's More to Me": A Turning P oint....................................................138
"Doing Something for the Bigger World" ............................................ 139
September 11th, 2002 ........................................................................ 144
Conclusion ...................................................................... 144
Chapter 8. Harold's Story ............................................................. 146
Introduction ............................................................ 146
It's Not Just a Game ....................................................................................146
Is There Something Wrong with Me? ................................................149
Questions of (In)Competence.............................................................. 150
Identity, Competence, and Occupation ........................................... 153
Crafting an Identity of Competence through Occupation ...................... 155
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“A Very Depressing Time” ..................................................... 159
The Process of Becoming: Three "Turnings" ............................. 160
Becoming Catholic........................... 160
My Mother's D eath...................................................................... 162
I’ m an Aspie! ...................................................................... 163
“The Older You Get, the Better You Become” .......... 168
Chapter 9. Doing, Belonging and Becoming ............................................ 170
Autism: Shifting the Focus.................. 170
Identity: Entering the D iscussion.............................................................. 172
Constructing Identities in Communities: Belonging and Becoming . . . 176
Implications for Occupational Science...................................... 186
Concluding Remarks ...................................................................188
References .............. 190
Appendix A. Diagnostic Criteria for Autistic Disorder
from the DSM-IV (APA, 1994) ................................ 211
Appendix B. Informed Consent.......................................................................... 213
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ABSTRACT
How people use occupation to make meaning in their lives has been a question of
great interest to occupational scientists. This ethnographic study concerns how adults
with high functioning autism, through their efforts at constructing identities, create
meaningful lives. Utilizing data collected from extensive interviews and participant
observation, this dissertation is about the lives of four adults and their process of “doing,
belonging, and becoming.” Each participant’s story is presented as a separate chapter for,
though they share a diagnosis, each participant had a unique way of crafting their
identities that was influenced by the historical epoch, the socio-cultural environment in
which they lived and their personal characteristics.
Despite traditional views that focus on the social deficits of autism, the
participants in this study were remarkably resourceful in using social strategies to
construct their identities. They used social interaction, narrative and occupation, three
inter-related means of constructing identities, although they did not always do so in a
“typical” manner. Key to their efforts was locating and becoming part of a community,
for, as I argue, it is within these social worlds that identities are crafted. For adults with
high functioning autism, constructing identities is a process requiring creativity and
ingenuity. It is often hard work, in many ways a struggle. However, the participants
persisted in their attempts to craft their identities and create a meaningful life.
By focusing on the lived experience of individuals with high functioning autism,
the findings of this study challenge many of the traditional deficit-focused views of
autism. This research contributes to the ongoing debate regarding identity, providing
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strong support for the argument that rather than having a unified and stable identity,
individuals construct multiple identities that are socially situated and are revised as life
unfolds. The findings also illustrate that people strive to create cohesion and a sense of
continuity. While many scholars consider cohesion and fragmentation contradictory, I
conclude that these ideas may in fact complement each other. Lastly, the findings
provide support for and extend the ideas put forth by occupational scientists regarding
the relationship of occupation and identity.
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CHAPTER 1
INTRODUCTION
Background to the Study
In October 2002, the state Legislature of California received the rather sobering
results of a statewide comprehensive pilot study on the epidemiology of autism. The
report suggested that the staggering increase in the number of people in the state with
autism could not be attributed to artificial factors, such as widening diagnostic criteria or
misclassification (M.I.N.D. Institute, 2002).1 These findings, which made national news,
added to the growing concern that autism, a life-long developmental disability, can be
considered "an epidemic" (Maugh, 2002). As the rates of autism have soared over the
past decade, so has public awareness. In fact, it seems as if information about autism is
everywhere. In newspapers, magazines, and television news shows, stories about the
causes and latest interventions appear with regularity. In movies, characters with autism
now appear on the screen from time to time.2 Professional journals from many
disciplines routinely feature articles about the clinical symptoms of autism that lead to a
diagnosis, as well as the myriad of interventions designed to "treat" autism.
Certainly part of this interest in autism can be attributed to the often mysterious
and puzzling behavior, the seemingly asocial nature of individuals with autism. When I
1 A prior report from the California Department of Developmental Services (1999)
indicated that the number of people with autism receiving services surged by 273% from
1987 to 1998.
2 McDonagh (1999) presents an interesting essay on the use of characters with autism in
films. He suggests that autism is used as a metaphor for alienation, illustrating that we all
have, in varying degrees, autistic traits and perhaps, an "autism anxiety."
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began working with children with autism in 1988,1 too was intrigued and captivated.
Somehow I felt strangely comfortable with these children, yet I must admit, at times I
felt greatly frustrated. My frustration stemmed from the fact that my clients were not
interested in participating in typical occupations, or at least not interested in participating
in typical occupations in typical ways. I often could not understand what my clients were
doing or why they were doing what they were doing; yet I had the sense that their actions
had meaning.
I also had difficulty imagining a future story for my clients, or forming "an image
of future life possibilities" (Fleming, 1994, p. 234). I asked myself many questions: Who
would my clients become? In what types of occupations would they engage? What was
meaningful to them? I was particularly interested in meaning making, for it is, as many
scholars contend, something that all humans seem to require (Bruner, 1990; Carisen,
1988; Frankl, 1984; Munitz, 1993; Yalom, 1980). It is also a primary concern of
occupational therapists who are, in a sense, "custodians of meaning" (Englehardt, 1986),
as they assist people in finding meaning in their lives through their daily occupations.
When I turned to the literature on autism to answer these questions, I found
myself awash in descriptions of deficits. It seemed that there were endless articles
detailing the cognitive, social, sensory, emotional, and perceptual deficits characteristic
of people with autism. Reading the literature I found myself frustrated once again. The
emphasis on deficits did not help me understand who my clients were as individuals, nor
did it provide me with any insight into their lived experience. In addition, the literature
clearly focused on children, with relatively little research devoted to adults. Through the
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few studies that focused on adults with autism, I developed a vague picture of their
“adaptive functioning,” information about where they lived, worked, and their social
networks (see for example, Rumsey, Rapoport & Sceery, 1985; Szatmari, Bartolucci,
Bemner, Bond & Rich, 1989; Venter, Lord & Schopler, 1991). I also located a small but
growing body of autobiographies and first-hand accounts written by adults with high-
functioning autism (see for example, Grandin, 1995; Grandin & Scariano, 1986;
McKean, 1994; 1996; Williams, 1992; 1994). These accounts provided compelling
stories of the lives of people with autism, an insider's view; however, I was still left with
unanswered questions, particularly how individuals with autism created meaning.
To learn more, I conducted a number of "pilot" studies. In order to answer my
questions about meaning making, I decided I would listen directly to people with autism.
I began with an analysis of the autobiographies of adults with high functioning autism
and later, conducted a single case study involving a series of interviews with a man with
autism. Soon after, as part of my doctoral coursework, I conducted a pilot ethnographic
study, which involved "hanging out" and interviewing four adults with autism over a
three-month period. These research experiences, along with my studies in occupational
science, inspired me to commence this ethnographic study about the lives of adults with
high-functioning autism.
In designing this study, I considered the different epistemological paradigms of
research related to people with disabilities. Certainly the most pervasive paradigm is the
positivist paradigm that views disability as a deficit and people with a disability as
individuals who need to be "fixed." Rioux (1994) calls this the "measles approach to
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disabilities (p. 5). People with disabilities are compared to nondisabled peers or "norms."
Research from this perspective, often referred to as the medical model, focuses on
labeling or diagnostic issues, identifying what is "different" about people, and
formulating intervention strategies. In this model, disability is viewed as being located in
the person, and people with disabilities are viewed as leading a life that is limited in
experiences. It was clear that this approach would not be appropriate for learning more
about lived experience and meaning.
I decided instead to utilize a research approach in which disabilities are viewed
as a social/cultural construction (Felske, 1994; Hahn, 1985; McDermott & Varenne,
1995). From this perspective, disability is seen as situated in the environment, not the
individual. As McDermott and Varenne write, "a disability may be a better display board
for the weaknesses of a cultural system than it is an account of real persons" (p. 327).
While people may have an impairment, it is the attitudes and barriers in the environment
that create disabilities. Understanding the impact of the biological condition in
conjunction with the sociopolitical context is essential in this research paradigm. In this
paradigm, research focuses on the perspectives and experiences of people with disability
and their abilities rather than their impairments. Research ultimately aims at
understanding how people feel and create meaning in their lives.
Why Identity?
With this epistemological stance, I began my research with the broad question,
“How do adults with high-functioning autism create a meaningful life?” As my time in
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the field progressed, it became evident that for the participants in the study, as for most
people, creating a meaningful life involved crafting identities. Meaning making was tied
to becoming a particular type of person in the social world. Though Christiansen (1999)
asserts, “one of the most compelling needs that every human being has is to be able to
express his or her unique identity in a manner that gives meaning to life” (p. 548), I had
not foreseen the extent to which constructing identities would dominate what adults with
autism did and told stories about. I was aware that reconstructing and preserving a sense
of self is often an issue of great concern to people who have experienced disruptions in
their lives, such as the onset of illness or disability (see for example, Becker, 1997;
Clark, 1993; A. Frank, 1995; Garro, 1992; Hunt, 2000; Sacks, 1985), yet I was surprised
to find identity to be of such concern to the participants. Perhaps my surprise was the
result of all of the reading that I had done that emphasized deficits. Certainly, such
statements concluding that individuals with autism have “an appalling poverty of inner
life” (Bemporad, 1979, p. 191), “find it difficult to apprehend his or her own experience”
(McAdams, 1997, p. 59), and have “a glaring lack of empathic relatedness” (Bemporad,
p. 191) might lead one to conclude that individuals with autism lack a sense of self, as a
few authors have suggested (McAdams, 1993; Ryan, 2000; Sacks, 1995). However, I
soon realized that such a conclusion was erroneous. The participants in this study were
not only hard at work crafting identities, but were also remarkably creative and
resourceful in their attempts to do so.
This dissertation then is concerned with gaining a deeper understanding about the
lives of adults with autism as well as with how people construct their identities. Identity,
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defined here as, “the way a person understands and views himself, and is often viewed
by others” (Holland, Lachicotte, Skinner, & Cain, 1998, p. 68), is a subject that has led
scholars from many different disciplines including psychology, anthropology, sociology,
philosophy, and occupational science to enter into an ongoing debate. My ideas about
identity, which I discuss in more detail in Chapter Two, have been influenced by many
discourses and many scholars. To set the stage, however, I outline five main assumptions
that have guided this research:
1. Identities are constructed, not merely something that develops in a fixed
sequence or in definable stages. This implies that is an active process,
requiring a sense of personal agency.
2. People have multiple, situated identities rather than one unified identity.
3. Identities are constructed in social worlds, through interactions and
experiences with others.
4. Identities change as life unfolds and narratives are revised. Experiences and
events lead people to reconstruct their identities.
5. Individuals construct their identities by engaging in a variety of social
practices, including narrative and occupation.
Situating the Study Within Occupational Science
Many of the ideas that guided me through this study are grounded in the
relatively new discipline of occupational science, “the study of the human as an
occupational being including the need for and capacity to engage in and orchestrate daily
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occupations in the environment over the lifespan” (Yerxa, Clark, Frank, Jackson,
Parham, Pierce, Stein & Zemke, 1990, p. 6). Occupation is defined here as “culturally
and personally meaningful activities in which individuals partake on a daily basis or at
various times throughout their lives” (Jackson, 1996, p. 341). Because occupation is a
complex phenomenon involving individuals in interaction in socio-cultural worlds, it is
best understood by integrating knowledge from a variety of disciplines, such as
anthropology, psychology, sociology, and philosophy (Clark et al., 1990; Clark, Wood &
Larson, 1998; Yerxa, et al.).
Occupational scientists are interested in the form (what is observable), the
function (how occupation facilitates adaptation), and the meaning (“the significance of
occupation within the context of real lives and in the culture”) of occupation (Clark,
Wood & Larson, 1998, p. 17). Therefore, both observable and subjective aspects of
occupation are important. Occupational scientists assume that humans have a drive to be
occupied and that “individuals are most true to their humanity when engaged in
occupation” (Yerxa et al., 1990, p. 7). Occupational scientists also contend that
individuals “create themselves as occupational beings” (Jackson, 1996, p. 341) by
choosing the occupations in which they engage. These choices are influenced by
personal values and interests and by the historical and cultural context in which the
person lives.
Occupation is intimately connected to identity. As Clark, Wood and Larson
(1998) note, "within the context of occupations, one begins to build an identity" (p. 20).
Occupations are seen as an important part of "being” and “becoming" (Fidler & Fidler,
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1978; Wilcock, 1998). Christiansen (1999) provides perhaps the most comprehensive
discussion about occupation and identity. He proposes that, "identities are closely linked
to what we do and our interpretations of those actions in the context of our relationships
with others" (p. 549). Though there has been considerable theorizing about the
relationship between occupation and identity, only a few studies have placed this issue at
the forefront (see for example, Braveman & Helfrich, 2001; Jackson, 1995). Thus it is
my intention that this research will contribute to and extend current ideas about how
people construct their identities through occupation. Throughout this dissertation, I will
illustrate that occupation is particularly potent when viewed as a practice of identity
within social worlds.
In order to understand occupation fully, it needs to be studied in a variety of
individuals, cultures, and contexts. Studies within the field of occupational science have
included studies about the occupations of children (Knox, 1997), adults (Blanche, 1998),
older women (Jackson, 1996; Ludwig, 1998), families of children with a disability
(Segal, 1995), and Mexican-origin mothers (Larson, 1996). Relatively few studies (see
for example, Clark, 1993; G. Frank, 2000; Spitzer, 2001) have focused specifically on
occupation in the lives of people with disabilities. This is rather surprising for a number
of reasons. First, one aim of occupational science research is to inform occupational
therapy practice (Yerxa, 1993; Yerxa et al., 1990; Zemke & Clark, 1996). Since
occupational therapists work extensively with people with disabilities, gaining a deeper
understanding of occupation, its form, function, and meaning, will enable therapists to
provide what Yerxa (1967) calls "authentic" occupational therapy; that is intervention
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that is both relevant and meaningful. She states, "understanding patients' views of
themselves, their worlds and their sources of satisfaction is central to the therapeutic
process" (Yerxa, 1967, p. 152). Second, Yerxa (1993) suggests that occupational science
research seeks to contribute to mainstream thought in society. By studying the
occupations of people with disabilities, it "assures that people with chronic conditions or
disabilities are viewed within the mainstream of human knowledge rather than being
abandoned to an island of abnormality as is often required by an 'applied' science which
sets them apart as 'pathological' or 'different'" (p. 5). Therefore, I hope that this study will
provide a deeper understanding of the lives of adults with high functioning autism, not as
individuals with occupational deficits, but as individuals, who, like others, engage in
occupation and strive to create a meaningful life by constructing identities in social
worlds.
Organization of the Dissertation
This dissertation, as the title suggests, tells stories of how adults with high-
functioning autism craft their identities. In these stories I plan to show how, using a
variety of cultural resources and much creativity, people construct multiple, situated
identities that change over time as unexpected events occur. Before I present these
stories, however, I provide some background information to the study. Chapters Two and
Three present an overview of relevant discourses. In Chapter Two, I explore the concept
of identity and the conflicts between the various discourses. By drawing from the
literature from diverse fields of study, I focus on how identities are constructed through
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social interaction, narrative, and occupation. In Chapter Three, I introduce information
about high functioning autism and provide an overview of the prevailing, deficit-focused
discourse that suggests that individuals with autism lack the skills needed to construct
identities. Chapter Four details the ethnographic methods and narrative strategies I
employed in this study, the dilemmas I faced in the field, as well as the strategies I used
to analyze the data. In Chapters Five through Eight, I present the stories of the
participants, Ben, Mina, Stewart, and Harold. These are short stories I have constructed,
representing my interpretation of their lives and more specifically, their process of
constructing identities, though I hope the voices of the participants are well preserved.
For each participant, there were many stories I could have told, different aspects of their
lives I could have emphasized, and this is where, as a researcher, I needed to make some
difficult choices. What I present are stories that illustrate the unique and creative
strategies that each person used to construct their identities. Each story highlights a
particular aspect of constructing identity and thus has a different theoretical frame.
However, the stories are unified in that they each illustrate how, though not without a
struggle, these adults with high functioning autism construct multiple, shifting identities
in social worlds. The stories are arranged in a developmental sequence, with the
youngest participant's story first, to illustrate the ways that identities change as life
unfolds and as people mature. Finally, in Chapter Nine, I elaborate on how individuals
with autism, in spite of their differences, construct identities through the social practices
of occupation and narrative, practices that are embedded in communities. Ultimately, I
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argue, it is through the hard work of locating and becoming part of communities that
individuals with autism craft their identities and find meaning in their lives.
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CHAPTER 2
CONSTRUCTING IDENTITIES
Introduction
This dissertation concerns how adults with high functioning autism construct
their identities. What I have chosen to present in this chapter is a review of the
discourses of identity that influenced my thinking during this research process. More
specifically, I present an overview of the discourses that address how individuals
construct their identities, which suggests that identity is not some “underlying substance
to be discovered” (Polkinghome, 1988, p. 149). Scholars from many disciplines, for
example, psychology, anthropology, sociology, philosophy, and occupational science,
have been interested in understanding this somewhat slippery concept resulting in
numerous interdisciplinary theories and discussions. Drawing from these varied
disciplines and ongoing debates, I explore what I see as three inter-related means of
constructing identity: 1) identities constructed in social worlds; 2) identities constructed
through narrative; and 3) identities constructed through engagement in occupation.
Before beginning this discussion, it is important to clarify what I mean by
identity and self, terms I use interchangeably, for as Ashmore and Jussim (1997) suggest,
identity and self are “large, amorphous, and changing phenomena that defy hard and fast
definitions” (p. 5). In this dissertation, I have chosen to think about identity simply as
“the person we think we are” (Christiansen, 1999, p. 548) or “the way a person
understands and views himself, and is often viewed by others” (Holland, et al., 1998, p.
68).
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Identities as Constructed in Social Worlds
Recently, the idea of identity as constructed in social worlds has generated much
discussion in anthropology, sociology, and psychology resulting in a literature that, as
Kondo (1990) suggests, “is a literature alive with tension” (p. 34). The roots of these
current theories can be traced back to the American pragmatists, William James and
George Herbert Mead, who were concerned with the practices of everyday life (Holstein
& Gubrium, 2000). Challenging the well-accepted notion espoused by Descartes that the
self resides in one's thoughts, devoid of the body and experience, James (1961 [1892])
introduced the notion that knowledge of the self is constructed through experiences in
the social world. Drawing on James' work, Mead (1934) also emphasized the importance
of social interaction. He wrote, "Selves can only exist in definite relationships to other
selves" (p. 63). Constructing a sense of self was viewed as a process, something created
in relationships and activity, not something already present. Mead did not completely
reject the notion of a "thinking self," an intrapersonal aspect of identity; rather, he
viewed the thinking self and social self as dialogical and interconnected. Discussing
Mead's philosophy, Burkitt (1991) notes, "even when we are alone, our introspective
thinking takes place in the form of an internal conversation with our own self, mediated
by social language and meanings" (p. 37).
Though the word identity connotes "sameness," James and Mead challenged the
idea that a person has a unified, bounded, unchanging identity, suggesting instead that
one has multiple identities. James wrote, "Properly speaking, a man has as many social
selves as there are individuals who recognize him and carry an image of him in their
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mind" (emphasis in the original) (James, 1961 [1892], p. 46). Mead, like James,
emphasized that there is not one unified self, rather that "there are all sorts of different
selves answering to all sorts of different social reactions" (p. 142).
While James and Mead and the symbolic interactionists who followed focused
on the self in social interaction, the sociologist Erving Goffman focused more
specifically on the self situated in everyday life (Burkitt, 1991; Holstein & Gubrium,
2000), the self as part of “the whole scene of his action” (Goffman, 1959, p. 252).
Goffman highlights the “dramaturgic” self, using such theatrical terms as scenes, scripts,
stage and performance to describe social interaction. Goffman's primary concern is “the
way in which the individual in ordinary work situations presents himself and his activity
to others, the ways in which he guides and controls the impression they form of him, and
the kinds of things he may and may not do while sustaining his performance before
them” (p. xi). People use a variety of strategies, including narrating and showing, to
perform and manage the impressions others receive to create identities in specific social
settings. According to Goffman, while social scripts are available, people are not bound
by these; there is room for improvisation. As Holstein and Gubrium (2000) write, for
Goffman, “the self is not just a role player, a mere puppet of its staging, but works with
others at its dramatic realization” (p. 36).
More recently, scholars identified as social constructionists, who draw on the
work of James, Mead and others, have entered into the interdisciplinary discussion about
identity. In contrast to those who emphasize the idea of an “essential self,” a stable,
unified self that develops through socializing practices and persists through time
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(Holland et al., 1998), many social constructionists describe the self as both
“distributed” and “situated” (Bruner, 1990; Holland et al., 1998; Kondo, 1990; Mishler,
1999), suggesting that individuals have multiple, changing identities that are expressed
contextually in specific, though fluid social relationships. As Holland et al. note,
“people's representations of themselves in the stream of everyday life reveal a multitude
of selves that are neither bounded, stable, perduring, nor impermeable” (p. 29).
Scholars who take a more extreme constructivist position emphasize discourse
and power relationships in the construction of identity. Drawing on the work of Foucault
(1977,1980), from this perspective, "the construction of identities cannot be discussed in
the abstract, separately from power relations" (Kondo, 1990, p. 43). Dominant
discourses and categories become imposed or "inscribed" on people in social interaction
and through institutional culture (Holland, 1997; Holland et al.). For example, in his
study of prisons, Foucault (1977) dramatically illustrates how individuals are produced
and identities become imposed through discourse. Holland (1997; Holland et al.) also
notes that the artifacts of powerful discourses, such as tax forms, resumes, and census
forms are used as a means of socially constructing identities. Discourses of power also
lead to classification systems that divide people into groups, controlling the nature of
interaction, and therefore influencing the construction of identities. For example,
children are often labeled by powerful medical and education systems with such
diagnoses as "autistic," or "mentally retarded," identities that are difficult to resist. In this
discourse, identities are viewed as more of a political construction than a personal one.
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While scholars such as Holland et al. (1998) and Kondo (1990) emphasize the
importance of power relations and discourse on the construction of identity, they also
bring the issue of personal agency to the forefront of the identity debate. According to
Holland et al., humans are both “social producers” and “social products” (p. 42). Though
discourses are powerful, they do not necessarily determine one's identities. Personal
agency plays an important role in the construction of identities. As Elder (1998)
suggests, "individuals construct their own life course through the choices and actions
they take within the opportunities and constraints of history and social circumstances"
(p. 4). Kondo (1990) concludes from her study of the Japanese workplace that her
participants were not "constructed subjects" but rather "crafted selves." As she writes,
"the crafting of selves implies a concept of agency: that human beings create, construct,
work on and enact their identities, sometimes creatively challenging the limits of the
cultural constraints" (p. 48). Mishler (1999), in his study of craft artists, supports this
view. He writes, "individuals achieve 'realizations' of their identities through the varied
ways in which they appropriate, adapt, and resist culturally defined definitions of
selfhood" (p. 51).
In summary, the work of James through the social constructionists suggests that
identities are crafted in social context, through interactions with others. Identities are not
fixed nor do they develop in a predictable manner; instead, we have a multiplicity of
changing identities that are socially situated and distributed. While some scholars
maintain a more extreme view of identity as “inscribed” in social relations and through
discourse, other scholars seek to reconcile some of the tensions of the identity debate
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suggesting that though identities are influenced by society and powerful discourses,
humans have a sense of personal agency, enabling them, to some degree, to “craft”
themselves (Kondo, 1990). The process of constructing identities then is complex and
sometimes highly contested, yet always ongoing within social worlds.
Identities as Constructed through Narrative
Recently, there has been, some suggest, a “narrative turn” in the social sciences
(Garro & Mattingly, 2000; Hinchman & Hinchman, 2001; Mattingly, 1998; Mishler,
1999) and this “turn” has had a significant influence on theories of identity. As Garro &
Mattingly point out, many scholars (for example, Bruner, 1990,2002; Carr, 1986; Kerby,
1991; MacIntyre, 1981; Ochs & Capps, 1996; Polkinghome, 1988, 1991, 1996), view
identity as “essentially a narrative matter” (Garro & Mattingly, p. 9). Narratives, or
stories, terms used interchangeably, Mattingly (1998) writes, are “about someone trying
to do something, and what happens to her and to others as a result” (p. 7). They are
centered around events and experiences, feelings, and actions—mainly interactions
(Mattingly, 1998; Mattingly & Lawlor, 2000). More specifically, stories involve tension,
something unexpected, a “breach” from the canonical (Bruner, 1990). Narratives have a
temporal dimension, a recognizable plot with a beginning, middle and end (Bruner;
Mattingly; Polkinghome; Ricoeur, 1984).
Humans, it seems, have an innate narrative capacity that links perceptions,
actions, and experiences into a comprehensible form, a capacity that develops at an early
age (Bruner, 1990; Polkinghome, 1988). Narratives can be seen as both lived and told.
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As MacIntyre (1981) suggests, “We all live out narratives in our lives” and “we
understand our own lives in terms of the narratives that we live out” (p. 212). Mattingly
(1998) argues that experiences have a narrative quality, that humans shape their social
actions by giving them a narrative form. People also spend a good deal of time listening
to and telling stories, quite often about their own lives. According to Bruner (1990), the
function of a story is to find a way to make sense of a deviation from a canonical cultural
pattern. Through stories, people make sense of experience and communicate what is
meaningful to others. As Ricoeur (1984) observes, “human lives need and merit being
narrated” (p. 75).
Many scholars have noted that telling personal stories is an essential means of
constructing identities (see for example, Bruner, 1990; 2002; Carr, 1986; Kerby, 1991;
Holstein & Gubrium, 2000; Mattingly, 1998; Ochs & Capps, 1996; Polkinghome, 1988;
1991; Rosenwald & Ochberg, 1992). The stories people tell are actively constmcted,
thus individuals can be seen, to a large extent, as the author of their identities. Ricoeur
(1985) states, “it is in telling our own stories that we give ourselves an identity.. . . It
makes very little difference whether these stories are true or false; fiction as well as
verifiable history provides us with an identity” (p. 178). Hinchman and Hinchman
(2001) echo Ricoeur stating, “personal identity, the answer to the riddle of 'who' people
are, takes shape in the stories we tell about ourselves” (p. xvii). We tell stories not only
to ourselves but to others, for narratives are “relational” (Linde, 1993), highly social acts
(Ochs & Capps), crucial in many ways to our social interactions (Bruner, 2002).
Through stories, others get to know who we are. Emphasizing this point Arendt (1981)
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writes, “Who somebody is or was we can only know by knowing the story of which he is
himself the hero—his biography, in other words; everything else we know of him,
including the work he may have produced and left behind, tell us only what he was” (p.
192) (emphasis in the original).
In contrast to the social constructionists’ view of identity as distributed,
contextual and fragmented, the narrative perspective of identity emphasizes the human
need for cohesion, “the unconscious desire for unification” (Kerby, 1986, p. 219).
Though life is full of discontinuities and disruptions (Becker, 1997; Mishler, 1992;
1999), to construct 'who' one is, a sense of self, seems to require that we see our lives as
having a sense of continuity, a sense that diverse life events link together (Carr, 1986;
Gergen & Gergen, 1983; Kerby, 1991; Linde, 1993; Polkinghome, 1988, 1991, 1996;
Rosenwald & Ochberg, 1992). Narrative provides a structure, an organizing principle for
human action and a means of integrating fragmented events into a coherent whole.
Through the process of “emplotment” (Ricoeur, 1984), narratives help us connect
various aspects of our lives together. In telling stories, we are able to reinterpret and
make meaning of our experiences and link them to the present to craft a sense of self. For
example, Cain (1991), in her study of identity acquisition in Alcoholics Anonymous
(AA), illustrates how personal stories become vehicles for transforming past experience
into self-understandings, a way to fashion an identity as an alcoholic. The importance of
connecting past and present is so important that Gergen and Gergen (1983) claim, “one's
view of self in a given moment is fundamentally nonsensical unless it can be linked in
some fashion with his or her past” (p. 255). Losing the ability to remember and tell
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stories of the past, or dysnarrativity, as seen in patients with Korsakov's syndrome and
other forms of amnesia, essentially results in people who lack a sense of self (Bruner,
2002; Sacks, 1985).
Constructing identities not only involves telling stories of the past; it involves
constructing narratives of the future, stories that continue “the T of a person”
(Polkinghome, 1988, p. 107), as well as the creation of “possible selves” (Markus &
Nurius, 1986). These future narratives create a sense of hope and provide direction to our
actions (Garro & Mattingly, 2000). As Good (1994) writes, narratives “project our
activities and experiences into the future, organizing our desires and strategies
teleologically, directing them toward imagined ends or forms of experience which our
lives or particular activities are intended to fulfill” (p. 139).
Our lives, as many scholars argue have a narrative form (Carr, 1986; MacIntyre,
1981; Mattingly, 1998; Polkinghome, 1988), thus we are, at any time, in the middle of
our life story, a story that is continually changing as life unfolds (Polkinghome, 1998,
1991). Because life is an ongoing process, full of discontinuities and unexpected life
events (Becker, 1997; Mishler, 1992; 1999), or breaches (Bruner, 1990), life stories, and
hence identities, must be continually revised. Identity, as Mishler (1999) notes, “is
neither fixed nor progressively developing, but is continually reshaped and reconfigured
in response to changing circumstances” (p. 62).
The onset of illness and disability is one such unexpected life event that often
disrupts life plots and the continuity of identity (Becker, 1997; A. Frank, 1995; Garro,
1992; Good, 1994; Hunt, 2000; Mattingly, 1998; Mattingly & Garro, 2000). Narrative, it
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seems, is a particularly potent means for people who are ill or disabled to gain a voice, to
make sense of their experiences, and to construct (or reconstruct) identities. As Becker,
who has done extensive research about individuals who have experienced life
disruptions writes, “narrative ameliorates disruption; it enables the narrator to mend the
disruption by weaving it into the fabric of life, to put experience into perspective” (pp.
167-168). Hunt notes that it is in dialogue with others that people construct stories that
connect illness with an evolving life story. Illness narratives are not only about
establishing continuity, but rather may be a means of transforming one's identity. In her
study of cancer patients, Hunt found that illness narratives were a means of changing
contentious social relationships, a means of defining a “changed self.” For individuals
with chronic illness and disability, narratives may be a way to restructure ideas of
normalcy (Becker), a way to claim an identity as a person with a disability rather than
reject it as a “spoiled” identity, to use Goffman's (1963) phrase.
The narratives that we live and tell are embedded in and shaped by particular
cultural paradigms (Bruner, 1990, 2002; Cain, 1991; Holland et al., 1998; Mattingly &
Garro, 2000; Peacock & Holland, 1993; Polkinghome, 1988; 1991; Rosenwald &
Ochberg, 1992). Culture is the medium from which we draw the plots, symbols,
metaphors, and understandings that we use to narrate our own experiences. Cultural
stories—folk tales, myths, novels, and movies—are a means of socializing people, a way
of telling people how to act and think. As Polkinghome (1991) writes, “self-identity is
fashioned by adaptation of plots from one's cultural stock of stories and myths” (p. 135).
Bruner (2002) concurs stating, “narrative acts of self making are usually guided by
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unspoken, implicit cultural models of what selfhood should be, might be—and of course,
shouldn't be” (p. 65). People then do not just tell any story. They tell stories in culturally
particular ways, stories about particular experiences and events, thus identities are both
self-authored and constructed through culture. Returning to Cain's (1991) work, she
demonstrates how individuals learn the AA story model. By telling personal stories
according to the narrative convention outlined by AA, individuals, she suggests, develop
an identity as an alcoholic.
Culturally dominant narratives and standard plot lines that emphasize the
normative can, however, limit and constrain the construction and expression of identity
(Becker, 1997; Hinchman & Hinchman, 2001; Ochs & Capps, 1996). When an
individual's experience does not fit the dominant narrative, they are often silenced,
unable to tell their stories. When one's story is not considered legitimate or recognized,
feelings of isolation, depression, or anxiety can result (Becker, 1997; Ochs & Capps,
1996). Individuals whose life stories are not validated by the culture often attempt to
“pass” (Goffman, 1963) by living out a more culturally acceptable narrative, in essence
constructing what Jackson (1995) refers to as an inauthentic identity. However,
individuals or “outgroups” may create “counterstories” that resist and challenge the
dominant narrative, eventually leading to alternative narratives (Hinchman & Hinchman,
2001).
In summary, from a narrative perspective, narratives help us and others
understand our experiences and it is in the process of both living and telling stories that
we construct our identities. Our personal narratives are an active, self-shaped process
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that are also influenced by cultural narratives. By telling stories, we attempt to link past,
present and future together to construct an ongoing, cohesive sense of self. Interestingly,
many scholars contend that identities are not, however, stable constructions, rather they
are continually revised as life unfolds. We seek to find continuity in our lives in spite of
the inevitable disruptions that occur. As Bruner (2002) writes, “self-making through self-
narrating is restless and endless” (p. 84).
Identities as Constructed through Engagement in Occupation
The third and final discourse regarding identity construction that I will discuss
relates to occupation. Scholars from a variety of disciplines have linked activity or
occupation to the process of creating identities. Before discussing this relationship, a
brief discussion about the concept occupation is warranted since occupation can mean
many things. Occupation, from the Latin root “occupacio,” meaning to seize or take
possession, implies doing or action (Engelhardt, 1977; Yerxa et al., 1990). It refers to
activities in which one engages. This includes a wide range of activities, those often
taken-for-granted things that people do on a daily basis, such as eating or driving to
work, as well as things people do less often, such as going to a concert or celebrating a
birthday (Clark et al., 1991; Jackson, 1996).
Yerxa et al. (1990) assert that humans have a drive to be occupied and that
“individuals are most true to their humanity when engaged in occupation” (p. 7). By
choosing and orchestrating the occupations in which they engage (Clark, et al., 1991;
Clark, Wood & Larson, 1998; Jackson, 1996; Yerxa, et al.), individuals “create
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themselves as occupational beings” (Jackson, 1996, p. 341). While human agency is
considered important, the historical and social context in which the person lives also
influences occupational choices.
An important characteristic of occupation is that it is personally meaningful
(Clark et al., 1991; Clark & Carlson, 2000; Gray, 1997; Jackson, 1996; Yerxa et al.,
1990). Clark et al. (1991) claim that occupations are always pregnant with meaning. The
meaning of an occupation is highly individualized and embedded in lived experience
(Clark & Carlson; Yerxa et al., 1990). Occupations have both “realistic” and “symbolic”
dimensions (Fidler, 1999, p. 2; also see Persson et al., 2001; Yerxa, 1991). The realistic
dimension of occupation refers to the goal-directed nature of occupation, for example,
learning a skill or having a product. The symbolic dimension of occupation refers to
what the occupation connotes or represents.
Occupation and identity, it seems, are inextricably linked. As Christiansen (1999)
notes, “occupations are key not just to being a person, but to being a particular person,
and thus creating and maintaining identity” (p. 547). Hasselkus (2002) also expresses the
link between occupation and identity. She writes, “one way that I know myself is
through occupation and one way that my self expresses itself in the world is through
occupation” (p. 17). As many scholars from other disciplines have noted, identities are
revealed and constructed through action or activity (occupation) (see for example,
Heidegger, 1962; Holland, et al., 1998; Polkinghome, 1988, 1996). Mattingly (1998)
writes that actions “may not only speak louder than words, they may provide a more
readily accessible vehicle for communicating, negotiating and even reflecting upon one's
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self identity” (p. 119). Clark & Carlson (2000) suggest that occupations act as a mirror—
who we are is reflected in what we do. Certainly in Western culture, what we do and the
roles we take on become a primary way we think about and are seen by others.
Occupations then, to some extent, shape one's identity (Christiansen; Clark & Carlson,
2000; Hasselkus, 2002; Jackson, 1995; Kielhofner, 2002; Persson, 2001).
Identities are also “action-guiding” (Novitz, 2001). To construct an identity as a
particular type of person, one consciously chooses and engages in particular occupations
that are culturally sanctioned. For example, to craft an identity as a dancer, one engages
in a variety of occupations or practices. One not only dances, but dresses and adorns
oneself in particular ways. Often, as Jackson (1995) emphasizes, we find creative ways
of enacting an identity through choosing and engaging in a variety of symbolically
meaningful occupations. For example, her study of lesbian women illustrates that by
participating in specific leisure, spiritual, and political occupations, women construct
and enact their identities as lesbians in personally meaningful ways.
Occupation, it seems, is inherently a social phenomenon as has recently been
discussed in the occupational therapy and occupational science literature (see for
example, Christiansen, 1999; Hasselkus, 2002; Lawlor, in press; Peloquin, 1998; Spitzer,
2001). Occupations, Christiansen suggests, “come together within the contexts of our
relationships with others” (p. 547). It is not just doing that matters, Lawlor argues; rather,
what matters is doing something that matters with someone else. Through occupation,
there is a sharing of experience (Peloquin). It is in the process of engaging in occupation
with others that identities are constructed. Spitzer illustrates this in her study of children
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with autism. She writes, “through the shared activities, the children became explorers,
inventors, and artists” (p. 325). Anthropologists have also discussed the connection of
social practices and identity construction. As Holland et al. (1998) note, “identities are
lived in and through activity and so must be conceptualized as they develop in social
practice” (p. 5). By linking individuals to particular social groups or communities where
experiences can be shared, occupation becomes a means of fashioning identities
(Persson et al., 2001).
The importance of occupation in the construction of identity can also be tied to
the discussion of narrative. As Jackson (1995, 1996) emphasizes, an assumption
underlying occupational science is that occupation contributes to the storied nature of
one's life. Occupation is not only a part of the stories we live, but also the stories we tell,
what Kielhofner (2002) calls “occupational narratives.” In these stories we weave our
occupations together to create a coherent life story. We also create and enact our future
narratives through engagement in occupation (Christiansen, 1999; Clark, 1993; Jackson,
1995, 1996; Kielhofner, 2002). Occupations are, as scholars in occupational therapy
have asserted for some time, much more than the physical “doing” of an activity (Fidler
& Fidler, 1978; Hasselkuss, 2002; Wilcock, 1998). Rather as Wilcock (1998) writes,
occupation is “the synthesis of doing, being, and becoming” (p. 249). Occupation then is
part of our emerging life narrative, an integral part of our “becoming” the particular
person we hope to become.
The connection between occupational therapy practice, narrative, and the
construction of identities has received a fair amount of attention in the occupational
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therapy and occupational science literature, beginning with Mattingly's (1991) study of
the narrative nature of clinical reasoning. Polkinghome (1996) writes that occupation is
part of one's “life plot” as well as a means of transforming one's narrative and identities.
Through engagement in meaningful activities, he suggests, self-stories can be revised;
for example, engagement in occupation can become a means of transforming one's
identity from “victimic” to “agentic.” Clark (Clark, 1993; Clark, Ennevor & Richardson;
1996) describes a collaborative therapeutic process involving what she calls
“occupational storytelling” and “occupational story making.” This process enabled
Penny, a woman who had a stroke, to connect her past sense of self with her visions for a
future self. Through the imagining, telling and acting of stories, she was able to construct
new identities. Clark (1993) urges occupational therapists to use occupational
storytelling and story making to enable clients to reconstruct a sense of self as a primary
aspect of practice. Likewise, Auzmendia, et al. (2002) emphasize that therapy must
involve helping clients “recraft occupational narratives for themselves” and find ways
“to put these narratives into action” so that occupational identities can be reconstructed
(p. 359). Christiansen (1999) also sees the “work” of occupational therapy as identity
building. He writes, “therapy becomes identity building when therapists provide
environments that help persons explore possible selves and achieve success in tasks that
are instrumental to identities they strive to achieve, and when it enables them to validate
the identities that they have worked hard to achieve in the past” (p. 555).
In summary, engagement in occupation reflects identities and is a means of
creatively constructing identities. Because occupation is embedded in social
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relationships and intimately connected to narrative, engagement in occupation is
essential to the process of crafting identities.
Conclusion
Drawing from literature from a variety of disciplines, I have highlighted some of
the tensions in the ongoing debate about identity and shown how individuals construct
their identities through social interaction, narrative and engagement in occupation.
Issues of identity are particularly important to people who experience a disruption in
their lives or are, due to discourses of power, in some way marginalized. Though a
surprising number of scholars have directly or indirectly studied how individuals with
chronic illness or acquired disabilities reconstruct their identities, only a limited number
of studies have focused on issues of identity in individuals with developmental
disabilities (see for example, Edgerton, 1967; Finlay & Lyons, 1998; Rapley, Kiernan &
Antaki, 1998). Conspicuously missing from the literature are studies about individuals
with autism. In the next chapter, I provide an overview of high functioning autism and
speculate as to why there has been little attention given to understanding how individuals
with autism craft a sense of self.
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CHAPTER 3
AUTISM AND IDENTITY
Introduction
Because this dissertation concerns individuals with autism, this chapter is
devoted to reviewing the literature on autism, focusing specifically on high functioning
autism. The majority of literature about autism derives from the positivist paradigm that
views disability as a deficit and people with disabilities as individuals who need to be
"fixed" (Rioux, 1994). Research tends to focus on labeling or diagnostic issues,
identifying what is "different" about people and formulating intervention strategies.
Only recently has research acknowledged the perspectives and experiences of people
with autism, emphasizing abilities rather than impairments. In addition, it is only
recently that first-hand accounts written by people with autism been considered a way to
better understand lived experience. This dissertation focuses on the lives of people with
high functioning autism from their perspective, not from a deficit perspective. However,
in this chapter I present the "positivist" research on autism because as a researcher (and
reader) it is important to understand the prevailing discourse in autism studies. It is
especially important since this discourse had a profound effect on the experiences of the
participants in this study. Throughout this chapter, I also include the perspective of
individuals with high functioning autism using excerpts from first-hand accounts. This
chapter is divided into two main sections. The first section provides diagnostic and
historical information on autism. In the second section, I review the literature related to
autism and social interaction, narrative, and occupation to better understand why there
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has been so little attention paid to the topic of identity in individuals with high
functioning autism.
An Introduction to Autism
Autism, from the Greek "autos" meaning "self," is a lifelong developmental
disorder characterized by the presence of impairments in social interaction and
communication and a preference for repetitive activities (American Psychiatric
Association, 1994). It is a heterogeneous disorder, often referred to as a spectrum
disorder, with the severity of symptoms ranging from mild to severe. Those with more
mild symptoms are often referred to as high functioning. Reports of the prevalence of
autism vary widely, due in part to the broadness of the autism spectrum. Bristol et al.
(1996) report conservative prevalence rates of greater than 10 per 10,000, with a rate of
at least 22 per 10,000 estimated for the broad autism spectrum. The Center for Disease
Control and Prevention (2001) reports prevalence rates from 2 to 6 per 1,000. This
means that in the United States, over a million and a half people have autism or some
form of pervasive developmental delay. Incident rates of autism are increasing rapidly,
with the Autism Society of America (2003) reporting a 10-17% increase per year. Indeed
autism is now the most prevalent developmental disability in the United States. Most
studies report similar rates of autism across ethnic, racial, and socioeconomic groups.
The male-to-female ratio is reported to be 3 or 4:1 (Gillberg & Coleman, 1992).
While the cause of autism remains unknown, there are a number of hypotheses
that point to genetic and viral influences (Gillberg & Coleman, 1992; Rapin, 1991). It is
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now widely accepted that autism is a neurobiological disorder. Because of the wide
range of impairments that characterize autism, a number of neuroanatomical
abnormalities have been hypothesized. Over the past decade, consistent sites of
maldevelopment, specifically in limbic structures and the cerebellum, part of distributed
neural networks, have been identified through autopsy and magnetic resonance imaging
studies (Bauman & Kemper, 1985; Courchesne, 1997; Courchesne et al., 1988; Kemper
& Bauman, 1998). These networks are involved in cognitive processes, the processing of
emotion, and the regulation of movement. While symptoms of autism may not be
evident at birth, Courchesne (1997) suggests that maldevelopment may occur as early as
the fifth week of gestation.
A Historical Perspective of High Functioning Autism
The term autism was first used by Leo Kanner (1943), a child psychiatrist, to
describe a group of 11 previously undiagnosed children who presented with similar
symptoms. In his original description, Kanner included individuals presently described
as high functioning. Kanner, in fact, believed that all people with autism were in the
average range of intelligence and had the potential for near normal language
development. A year later, Hans Asperger, an Austrian physician, published a report
describing four boys with average intelligence, adequate but unusual language skills,
social interaction deficits, and mild autistic characteristics (Asperger, 1991).
Over the next decade, other clinicians reported similar cases, though there was
considerable controversy and confusion over the use of the term "autism." Some
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clinicians were reluctant to use the term because it had been used to describe individuals
with schizophrenia who, in adulthood, exhibited extreme withdrawal from the world into
the self (Frith, 1991; Tsai, 1992). Thus, during the 1950s and 1960s, a number of other
terms were used instead of autism, including childhood schizophrenia and infantile
psychosis (Tsai). Formal diagnostic criteria for autism were not developed until the
1970s, and autism was not included in the Diagnostic and Statistical Manual until 1980.
During the 1950's and 1960's, the majority of research on autism focused on
children who fell into the lower range of functioning (Mesibov & Schopler, 1992). It was
during this time that psychodynamic theories of etiology prevailed. Parents, specifically
mothers, who were called "refrigerator mothers" (Bettleheim, 1967), were thought to
cause the child's atypical development due to poor nurturing. In 1962, Rimland, himself
the parent of a child with autism, published a book suggesting a neurobiological basis for
autism. It was not until the 1970s that this theory was widely accepted.
Also in the 1970's, researchers began to focus on children with more mild
symptoms of autism. According to Gillberg (1998), high functioning autism was not
expressly referred to in the literature until DeMyer used the term in 1981. During the
same period of time, Wing rediscovered the writings of Asperger, whose work had been
virtually ignored. She translated it into English and coined the term Asperger's syndrome
(Wing, 1981). This term was used as a diagnostic category in Europe throughout the
1980s but was not adopted in the United States until the 1990s. Asperger's syndrome was
included in the Diagnostic and Statistical Manual for the first time in 1994 (American
Psychiatric Association, 1994).
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Since the early 1980s, research has been devoted specifically to high functioning
autism and Asperger's syndrome. By 1998, more than 160 papers had been published in
scientific journals (Gillberg, 1998). The vast majority of this research has focused on
children, with far less research devoted specifically to adults.
Diagnostic Criteria
Currently, the Diagnostic and Statistical Manual, 4th Edition (DSM-IV)
(American Psychiatric Association, 1994) is used in the United States to diagnose
autism. In the DSM-IV, autism is one of five diagnoses under the umbrella of pervasive
developmental delay. According to the DSM-IV, individuals with autism share key
symptoms, though the number and severity of symptoms may vary. The DSM-IV
identifies three deficit areas: 1) qualitative impairments in social interaction; 2)
qualitative impairments in communication; and, 3) restricted repetitive and stereotyped
patterns of behaviors, interests, and activities. The onset of these symptoms must be
before three years of age (see Appendix A).
Although specific diagnostic criteria for high functioning autism have not been
established, this term is often used to describe a group of individuals on the autism
spectrum who present with more mild symptoms. Tsai (1992) offers the following
definition of high functioning autism:
High-functioning autism is a subtype of pervasive developmental disorders. It is
defined by the presence of slightly abnormal and/or mildly impaired
development in the areas of social interaction and communication, as well as by
the presence of restricted, repetitive behavior.. . . There is some difficulty in
domestic, school, occupational, or social functioning, but there are some
meaningful interpersonal relationships (pp. 35-36).
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While the use of intelligence levels, as measured by standardized intelligence
tests, are highly criticized, they are often used to identify high functioning autism. In
1976, Bartak and Rutter reported that children with autism with Performance IQ scores
above 70 exhibited different behaviors and skills than those children with IQs below 70.
Since that time many researchers (for example, Rumsey, Rapoport & Sceery, 1985;
Szatmari et al., 1989) have used IQ scores ranging from 65 to 80 as the criterion for high
functioning autism. Siegel, Minshew, and Goldstein (1996) caution against using IQ
scores as the most important diagnostic tool to differentiate high functioning autism
from other types of pervasive developmental disorders. Tsai (1992) suggests that in
addition to IQ, expressive and receptive language abilities and social functioning, as
measured through standardized testing, should be used to determine whether an
individual has high functioning autism.
The Autism Society of America (2000) lists the following characteristics of high
functioning autism: average or above average intelligence; highly developed language
skills; lack of social interaction skills; inappropriate behavioral responses to social
situations; lack of understanding of humor or irony; and the potential to live
independently. Within this high functioning group, individuals are likely to show a wide
variety and range of symptoms (Fullerton, Stratton, Coyne & Gray, 1996).
High functioning autism accounts for only a small percentage (11-34%) of all
cases of autism (Gillberg, 1998), though prevalence rates vary considerably due to lack
of agreed upon criteria. The gender ratio is greatly skewed, with many more males
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identified as having high functioning autism than females. Gillberg (1998) reports ratios
ranging from 8-15:1.
Closely related to high functioning autism, and often included in discussions of
autism spectrum disorders, is Asperger's syndrome. Whether a distinction can be made
between high functioning autism and Asperger's syndrome is controversial. According
to the DSM-IV (American Psychological Association, 1994), individuals with
Asperger's syndrome have impairments in social interaction, restricted and repetitive
behaviors, but no history of language delay. In addition, there are no delays in cognitive
development, self-care, or adaptive behavior, other than social interaction.
Autism and Identity
The literature on autism and identity is, perhaps not unexpectedly, rather sparse.
Those researchers who do mention identity suggest that people with autism lack a sense
of self (McAdams, 1997), or view the process of constructing identities as a "struggle"
(Ryan, 2000). Sacks (1995) writes of an "identity hunger” in people with autism,
describing "a need to take off, take on, take in, other personas" (p. 223). Donna Williams
(1992, 1994), a woman with high functioning autism writes perhaps the most detailed
account of her "battles" to craft a self, to become, as the title of her second book
indicates, a “somebody somewhere.” She writes in her introduction to her first book,
Nobody Nowhere, "I have, throughout my private war, been a she, a you, a me, and
finally, an I" (author's note, no page number). Since there has been no formal research
focusing specifically on autism and identity, it is, I think, helpful to examine the
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literature related to the ways individuals construct identities that I identified in the
previous chapter. In the following sections I explore the literature on autism as it relates
to social interaction, narrative, and occupation and attempt to draw some conclusions.
While, as noted in the previous chapter, these topics are connected, I have presented each
separately for clarity.
Autism and Social Interaction
Social interaction deficits are perhaps the most salient feature of high functioning
autism, thus they have been studied extensively. Kanner (1943), in his original
description of individuals with autism, described a preference for aloneness, difficulty
forming relationships with others, and lack of eye contact. Other social deficits
frequently sited in the literature include relative lack of peers relationships, difficulty
understanding and responding to the emotions of others and difficulty sharing emotions
and experiences with others (Baron-Cohen, 1988; Capps & Sigman, 1996; Gillberg &
Coleman, 1992; Howlin, 1997). Closely connected to social interaction deficits are the
commonly noted communication difficulties of people with high functioning autism,
including problems in comprehension of verbal interaction, fluency, semantics, prosody,
and pragmatics (Baltaxe & Simmons, 1992; Tager-Flusberg, 1981). While social
interaction deficits have been more widely studied in children with high functioning
autism, recent research suggests that many of these deficits persist into adolescence and
adulthood, though they may not be as pronounced (Gutstein & Whitney; 2002; Sigman
& Ruskin, 1999; Tantum, 1991, 2000).
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Social interaction deficits may manifest themselves in different ways. In
relatively early research on autism, Wing and Gould (1979) described three subtypes of
autism based on social interaction: aloof, passive, and active but odd. According to Wing
(1992), people with autism may display different types of interactions depending on
context. The first subtype, the socially aloof group, is characterized by an apparent
indifference to others. This type occurs least commonly in individuals with high
functioning autism. Individuals in the second subtype, the passive group, rarely initiate
social interaction but respond amiably, though without much emotion, to interactions
initiated by others. These individuals may be able to participate in some social activities
if reciprocal interaction is not required. According to Wing (1992), adults in this group
are often naive and extremely gullible.
Individuals who display the third subtype of social impairment, called active but
odd, initiate contact with others but do so in unusual ways. While often highly verbal,
they tend to talk about their own idiosyncratic interests, engage in incessant questioning,
with little modification of behavior based on social feedback (Wing & Gould, 1979;
Nordin & Gillberg, 1998).
A fourth subtype, those with stilted social interaction, is described by Shah (cited
in Wing, 1992). These interaction deficits are subtle and may go unnoticed on first
meeting. People in this group are able to converse and have an awareness of social
conventions, but there is a mechanical quality to their interactions. Wing (1992) states,
"this subgroup shades into the eccentric end of the wide range of normal behavior" (p.
138).
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The ability to interact socially requires many underlying abilities, including those
that develop early in life. Capps and Sigman (1996) discuss how young children with
autism often fail to engage in the “common spaces” in which typically developing
children generally connect with others. While children with autism do form attachment
relationships, they are less likely to initiate interactions (Sigman & Mundy, 1989). In
studies examining joint attention—the ability to share attention with others—results
consistently demonstrate that children with autism show striking differences with
comparison children. For example, young children with autism often fail to monitor the
gaze of others (Sigman, Mundy, Sherman & Ungerer, 1986), are less likely to give or
show toys to caregivers (Sigman et al., 1986), and are less likely to smile when looking
at others during everyday social interaction (Kasari, Sigman, Mundy & Yirmiya, 1990).
Social referencing, the seeking of emotional reactions of significant others, is also
reported to be lacking in children with autism (Sigman, Kasari, Kwon & Yirmiya, 1992).
Taken together, the results from studies on joint attention and social referencing
suggest that individuals with autism have difficulty sharing experiences. As Hobson
(1993) notes, children with autism "do not fully understand what it means for people to
share and coordinate their experiences" (p. 5). Other researchers (Capps & Sigman,
1996; Tantum, 2000) suggest that individuals with autism lack intersubjectivity, which
Stem (1985) identifies as "a deliberately sought sharing of experiences or events and
things" (p. 128). When attempts are made to share experiences, people with autism often
do so by talking about their own esoteric interests, asking incessant questions and
abruptly switching subject (Frith, 1989; Wing, 1992). Tantum (2000) suggests that while
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joint attention difficulties often wane, deficits in intersubjectivity continue into
adulthood.
Many studies have found that individuals with high functioning autism have
difficulty perceiving emotional expressions, which, as Hobson (1992) suggests, forms
the basis of social interactions. Individuals with high functioning autism often have
difficulty naming emotions from speech samples and difficulty identifying affect from
photographs (Capps, Yirmiya & Sigman, 1992; Macdonald et al., 1989). They also have
difficulty matching words about affect with facial expressions (Hobson & Lee, 1987)
and interpreting the simultaneous presentation of facial expressions, posture, gestures,
and tone of voice in social settings (Koning & McGill-Evans, 2001).
Another aspect of social interaction involves "mind-reading," for example, being
able to infer the mental, non-observable states of others, including their knowledge,
intentions, beliefs, and desires. This ability is often referred to as a "theory of mind"
(Baron-Cohen, 1991; 1995; Baron-Cohen, Leslie & Frith, 1985). In one study examining
theory of mind, Baron-Cohen, Leslie, and Frith (1985) found that 80% of children with
autism were unable to correctly predict the beliefs of others. Individuals with autism
often have difficulty anticipating what others will do and say in various situations and
fail to understand that others may not have knowledge of or interest in what is of concern
to them. Because of the lack of appreciation of contextual information and difficulty
understanding the minds of others, individuals with autism may appear self-centered and
uncaring, or lacking in empathy (Baron-Cohen, Jolliffe, Mortimore, & Robertson, 1997;
Frith, Happe & Siddons, 1994; Howlin, 1997).
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Individuals with autism are also reported to lack an awareness and understanding
of social/cultural conventions and an understanding of the nuances of social interaction.
Referring to children with autism, Bruner and Feldman (1993) write, "there is ample
evidence that he or she cannot or will not, from early on, enter into the interactive
formats through which normal infants learn about canonical patterns of social behaviour
in his or her immediate cultural milieu" (p. 287). Social conventions often simply do not
make sense to the person with autism. Though conventions may be rotely learned,
individuals with autism have difficulty applying them in social contexts, which often
becomes problematic (Hobson, 1992; Landry & Loveland, 1988; Myles & Simpson,
2002; Tantum, 2000). Indeed many adults with autism acknowledge how confusing
social conventions can be. McKean (1994), a young man with autism writes, "Humanity
is basically nothing but one big enigma to me. What is it that drives people to do what
they do?... There are many ways that people communicate and many things that they do
while they are together that simply make no sense to me" (p. 58). Grandin (1995), a
woman with high functioning autism also notes the challenge the social world posed,
stating, "Figuring out how to interact socially was much more difficult than solving an
engineering problem" (p. 138). For individuals with autism then, this may result in
feeling like an outsider, "an alien" (Sinclair, 1992), or like "an anthropologist on Mars"
(Sacks, 1995). As Sinclair writes, "In some ways I am terribly ill-equipped to survive in
this world, like an extraterrestrial stranded without an orientation manual" (p. 302).
In spite of these deficits, many adults with high functioning autism express
interest in developing friendships and make attempts to seek out social interaction
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(Craig, 1998; Wing, 1992). Craig found that over 85% of the people in his study on
quality of life in individuals with autism had 1-8 friends, and 94% reported spending
between 1-15 hours per week with friends. Still, approximately 15% reported having no
friends. Finding friends is certainly a great source of frustration for many. As McKean
(1996) writes, "Most people I meet in my life are not all that interested in becoming
friends. Maybe I am just too strange for them. That is okay because if I am too strange
for them then chances are that I really don't want them for a friend anyway" (p. 9).
Based on this brief review, it is clear that difficulty connecting with others and
participating in social worlds is considered a primary deficit of individuals with high
functioning autism. Without being able to "read minds" and understand the social
conventions of everyday interactions, one might conclude that individuals with autism
are likely to have difficulty situating and presenting themselves in a variety of social
contexts where identities are typically constructed. One might suspect then that
constructing identities through social means would indeed be, as Ryan (2000) suggests, a
"struggle."
Autism and Narrative
Researchers studying autism have recently shown interest in the narrative
abilities of individuals with autism, and some see atypical narrative development as a
key to understanding autism (Bruner & Feldman, 1993), particularly in individuals with
high functioning autism (Ryan, 2000). Individuals with autism are reported not only to
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have difficulty telling stories but also difficulty giving life a narrative form (Bruner &
Feldman; Capps & Sigman, 1996; Ryan).
These narrative deficits are, many feel, related to the difficulty that individuals
with autism have participating in the social and cultural worlds where narration occurs
(Bruner & Feldman, 1993; Capps & Sigman, 1996; Loveland & Tunali, 1993; Ryan,
2000). As Capps and Sigman write:
Autistic people's limited inclination or ability to narrate is not surprising if the
capacity for narrative builds on the impulse to share affective experiences with
others, to seek out affective information from others in making sense of
ambiguous situations, and to communicate intentionally about topics of shared
interest (p. 289).
For most children, culture provides a "scaffold" for learning how to construct and
use narrative modes of thinking (Bruner, 1990). From an early age, people with autism
have difficulty entering into the narrative meaning-making systems of the culture
(Bruner & Feldman; Capps & Sigman). They are often seen as failing to participate in
the "culture game" (Vinden & Asington, 2000), or as "individuals without a culture"
(Baron-Cohen, 1993), thus absorbing, understanding, using and participating in cultural
narratives becomes a challenge. Without such cultural scaffolding, Ryan suggests,
narratives will be "impoverished."
Individuals with autism do use narratives but they often do so in unconventional
ways. Because of their difficulty mastering language skills, the narratives of children
with autism are reported to be shorter, less complex, and contain more errors in grammar
and word-choice (Loveland & Tunali, 1993). Individuals with autism have difficulty
managing changes in point of view (Loveland & Tunali) and lack “the causal, temporal,
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and intentional pragmatic markers needed for story-making” (Bruner & Feldman, 1993,
p. 280). The use of metaphors is also considered to be unconventional (Ryan, 2000).
Ryan (2000) reports that individuals with autism often use narratives in ways that
are not culturally canonical. She suggests that people with autism draw from a limited
number of narratives, for example, using scenes from television shows or Disney videos
almost exclusively to convey experiences. While these narratives may make sense to
those who know the person well, they are often told out of context, making it difficult for
others to understand the significance of the narrative.
In order to tell stories about personal experience, experience must be
apprehended and appropriated as one's own, which McAdams (1997) suggests
individuals with autism fail to do. According to Ryan (2000), the everyday encounters of
individuals with autism are often chaotic, and experiences may be "essentially
unmeaningful and uncomfortable" (p. 81). There is not, in essence, an "understandable
flow of experiences" (Polkinghorne, 1988, p. 13). Sacks (1995), in writing about a boy
with autism, an artistic prodigy, ponders how this child experienced the world:
I had the feeling that the whole visible world flowed through Stephen like a river,
without making sense, without being appropriated, without becoming part of him
in the least. That though he might, in a sense, retain everything he saw, it was
retained as something external, unintegrated, never built on, connected, revised,
never influencing or influenced by anything else (p. 56).
Indeed many of the first-hand accounts of individuals with autism illustrate the
chaos of everyday experience that results from irregular sensory processing and emotion
regulation. McKean (1994) writes about his sensory processing: "I have learned that my
five senses are dysfunctional, and they do not always tell me what is going on, and they
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are not always reliable" (p. 58). Williams (1996) describes how she struggles with
emotions: "I either feel too much, feel nothing, have no idea what I am feeling or know
what I'm feeling but find my brain telling my body to respond in a way that is totally out
of line with what I am feeling" (p. 122). Without the ability to apprehend and perceive
experience in an organized way, it becomes difficult to encode and convey experience as
a narrative (Bruner & Feldman, 1993; Ryan, 2000). Again, this is not to suggest that
people with autism do not use narrative, but, as Bruner (1994) notes, their accounts are
surprisingly "nonagentive." Happe (1991) also notes that the autobiographies of adults
with autism are more "externally" or action-oriented rather than focused on internal
feeling states.
In addition to difficulty telling stories, Ryan (2000) suggests that individuals with
autism may have difficulty using narrative for thinking about and giving life coherence.
A number of researchers have observed that individuals with autism have difficulty
understanding the past and anticipating the future (Bruner & Feldman, 1993; Loveland,
1993; Ryan, 2000). According to Ryan, people with autism often have difficulty
connecting life events together and tend to view themselves as "standing still and
remaining the same rather than existing in time" (p. 91). Therefore, individuals with
autism may not experience their life as an unfolding story.
Based on this discussion of autism and narrative, one may conclude that
individuals with autism will have difficulty utilizing narrative strategies to construct
their identities. Individuals with autism, the literature suggests, have difficulty
participating in social and cultural situations where narrative is used thus they have
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difficulty absorbing, using, understanding, and participating in narratives in
conventional ways. Ryan draws the most direct connections between autism, narrative
and identity. She states, "while persons without autism borrow from the collective stories
to formulate their personal narratives, the person with autism is in many ways left
struggling to form his or her narrative identity in a cultural void" (p. 72). In addition, the
literature suggests that individuals with autism have difficulty viewing their lives as an
ongoing life story, connecting past and present with an imagined future, which is, as I
proposed in the last chapter, an important aspect of constructing identities.
Autism and Occupation
Though occupation is rarely the focus of studies of individuals with autism, the
literature on autism is peppered with descriptions of occupation. Play in children with
autism is undoubtedly the most systematically studied occupation and is consistently
found to be qualitatively different from non-disabled peers (Wulff, 1985). Differences in
social play (Black, Freeman & Montgomery, 1975; Restall & Magill-Evans, 1994),
symbolic and imaginative play (Libby, Powell, Messer & Jordan, 1998; Wing, Gould,
Yeates & Brierley, 1977), and the variety and complexity of play have been identified
(Baron-Cohen, 1987; Wulff, 1985).
Spitzer (2001), in an ethnographic study, presents a different view of the play of
non-verbal children with autism. She describes in detail both the solitary and the socially
co-constructed play of the children in her study. She discovered an array of "co
occupations" in which the children and trusted adults engaged, including body,
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perceptual, object and scripted interactive activities. While some of the play could be
considered unconventional, Spitzer emphasizes that children and adults often negotiate
the construction of occupations, finding ways to connect and create meaningful play
experiences.
Few studies have focused on the occupations of adults with high functioning
autism. In studies of adaptive functioning, work is consistently found to be an
occupation that is challenging for individuals with autism. In spite of relatively high
levels of education, individuals with high functioning autism, like other people with
disabilities, have a low rate of employment (Rumsey et al., 1985; Szatmari et al., 1989;
Venter, Lord & Schopler, 1991). When employed, they commonly hold jobs that are
fairly routine in nature and have minimal social requirements.
A common characteristic of individuals with high functioning autism is a
restricted range of interests as well as highly specialized interests, often referred to as
'fixations' or ’ obsessions.' These differ from ordinary hobbies in their intensity and
circumscribed, non-social nature (Attwood, 1998; Lord et al., 1989; Tantum, 1991,
2000). Specialized interests often involve memorizing, classifying, and listing
information, for example, names and populations of cities or the price of gas. They may
involve a fascination with or collection of particular objects, for example, fans
(Newport, 2001) or shiny objects (Williams, 1992). The intensity and unusualness of
these interests may be difficult for others to understand and can interfere with social
interaction. However, these interests often have great personal and symbolic meaning.
They may be relaxing, a means of soothing oneself and an attempt to make sense of a
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confusing social world (Attwood; Williams). Tantum (2000) notes that special interests
are “attempts to find a powerful quantitative clue to society” for they put “a bound on
human endeavor and may represent some sense of mastery over the unpredictability of
other people” (p. 384). In a study of high functioning adults with pervasive
developmental disabilities, Mercier, Mottron and Belleville (2000), using semi
structured interviews, found that though specialized interests limited social interaction,
they were a source of validation and gave people “a sense of 'identity' and 'pride'” (p.
415). Specialized interests have also been noted to be a way of creating a niche in society
(Attwood; Grandin & Scariano, 1986; Grandin, 1995; Howlin, 1997). As Grandin
writes, “What started out as a fixation has turned into a life-long dedication of improving
the welfare of farm animals by designing humane equipment and facilities” (Grandin &
Scariano, p. 133).
The daily activities of individuals with high functioning autism are often
described as repetitive and dominated by routines (Attwood, 1998; Bemporad, 1979;
Tantum, 1991,2000). Routine, it is suggested, may be imposed to make life more
predictable, to create order, and to ensure that change will not occur (Attwood; Ryan,
2000; Williams, 1992; 1994). Insistence on routines often makes participation in social
activities difficult since they are by nature somewhat unpredictable.
Though the literature emphasizes the restricted range of occupations, in a pilot
study involving the analysis of autobiographical accounts of four individuals with autism
(Sean Barron [Barron & Barron, 1992], Temple Grandin [Grandin, 1995; Grandin &
Scariano, 1986), Tom McKean [1994,1996], and Donna Williams [1992,1994,1996]), I
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found a surprising array of occupations and their meanings richly described. These
meanings included self-expression, escape and transcendence, establishing equilibrium,
and dedication to a cause. Many of the individuals described engagement in writing,
music, and art as being important avenues for self-expression and a means of
communicating with others. McKean (1994) explains that poetry was initially “sanity
maintenance” (p. 93), a way to keep his mind occupied and an escape from the horrors of
institutional life. Later it became a “spiritual mirror” (p. 93), a way to express how he
saw himself and a way for others to enter into his private world.
Many of the authors' occupations provided an escape from an overwhelming and
sometimes meaningless world. For Barron (1992), his fascination with astronomy
provided an escape from loneliness and a retreat into a world of fantasy. He says:
Astronomy filled part of my void of loneliness. . . . I could deal with phenomena
that were “out there,” and it helped me get away from my present situation. I
loved studying the various planets because it made it much easier to imagine
being elsewhere. I basked in the soothing comfort of my own fantasies (p. 202).
The authors describe many sensory-based occupations as being meaningful
because of the sense of internal organization that they create. Grandin (1995) is well
known for her creation of a "squeeze machine" which provides pressure touch and helps
her to deal with her tactile cravings and anxiety. She reports that by using the machine
she feels "comfortable in my own skin" (Grandin, p. 63). Grandin's use of the "squeeze
machine" enables her to fulfill a basic human need, that of touch for comfort.
Lastly, some of the occupations described by the authors involved contributing to
society through engagement in a cause. Grandin (1995), for example, writes about her
work, which is dedicated to the cause of developing systems to improve the treatment of
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livestock animals. Another cause for many of the authors is autism. Grandin spends
much of her time conducting research related to autism and has in fact, published
numerous papers (for example, see Grandin, 1992). McKean (1996) also reports on the
importance of being involved helping others understand autism. He writes:
I love doing conferences. I feel that I am contributing something very important
to society in a way that few people can. The world is a better place now because
of that involvement and many less children are in pain. That makes me feel good.
Like I am doing something worthwhile (p. 1).
Taken as a whole, the literature related to occupation and autism suggests that
individuals with high functioning autism may engage in occupations in a manner
qualitatively different than others without disabilities, have difficulty participating in
highly social occupations, and may find their interests to be somewhat socially
unconventional. However, in spite of these differences, occupation often has great
personal meaning and may afford opportunities for individuals to build connections with
others, and thus may be a strategy for constructing identities.
Questions and Queries
The literature on autism and identity is indeed sparse. Examining the literature
related to social interaction, narrative, and occupation—-three strategies that I have
suggested people use to construct their identities—sheds some light on this issue but, as
I have suggested, research based on deficit models do little to help us understand the
lived experiences of individuals with autism. Therefore, there are many unanswered
questions. Do individuals with high functioning autism construct identities or do they
lack a sense of self? If they construct identities, how is this done, given the range of
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deficits reported in the literature? Do they construct multiple, changing identities in
response to life experiences? How do they situate themselves in social worlds? It is these
questions and others that I explore in the stories of four adults with high functioning
autism.
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CHAPTER 4
“IT MUST BE INTERESTING STUDYING ME”:
METHODS AND DILEMMAS IN THE FIELD
Introduction
This study is an ethnographic study in the sense that it focuses on experience and
activity of people from the point of view of those who live it (Prus, 1996)—in this case,
the experiences and occupations of adults with high functioning autism. Ethnographers
focus on the “doing” of everyday life, including both mundane and unique experiences
and practices. In ethnography, meaning and experience are viewed as located in the
ordinary, everyday practices and local, natural settings (Emerson, Fretz & Shaw, 1995;
Gubrium & Holstein, 1997; Prus).
In many ways, this is not a traditional ethnography but rather a study “at the
border of narrative and ethnography” (Gubrium & Holstein, 1999). This study is not
about “culture” per se, but about individuals who live in a particular culture and their
personal stories. This type of research is an intersubjective practice (Clifford, 1986;
Rosaldo, 1993), a highly collaborative endeavor in the way that sites are selected,
participants are located, trust is developed, and information is shared. In this chapter I
discuss these issues and the dilemmas I faced along the way. Lastly, I discuss the analytic
and interpretive strategies I employed.
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Locating Participants
To recruit participants for this study, I contacted an organization called Autistic
Adults Coming Together (AACT),1 a group for adults with autism and Asperger's
syndrome. I had recruited participants for my pilot study from AACT two and a half
years earlier. AACT was founded in 1993 by a small group of adults with autism who
felt the need for a community—a place where people with autism could gather, socialize,
and find support. Since its inception, the group has met one Saturday afternoon each
month for approximately three hours. Meetings take place in various locations around
Los Angeles so that people from different parts of the city are able to attend, at least on
occasion. At any given meeting an average of 25 to 30 people gather. Though the group
is run by and for adults with autism, it is associated with the Autism Foundation, a large
organization comprised mainly of parents of individuals with autism. Most of the people
who attend AACT have a diagnosis of autism or Asperger's syndrome, though there are
some people who, undiagnosed, feel kinship with people on the autism spectrum.
Occasionally, spouses, other family members, and outside supports (i.e., group home
staff) accompany people to the meetings. AACT members vary in age, gender, race,
ethnicity, social experience, education level, and functioning level. Based on my
experience with AACT, it appeared that a large percentage of the members are from
white, middle/upper class, and educated families.
When I contacted AACT, I was invited to attend an upcoming meeting to explain
my research. At the meeting I was introduced by Harold, the current facilitator of the
1 AACT is a pseudonym I have chosen for this group. Pseudonyms for groups, people, and
places will be used in order to maintain confidentiality.
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group. I gave a brief explanation of my research, handed out a flyer with my name and
contact information and encouraged people to talk to me at the break if they were
interested in participating. I planned to recruit four people, since one of the participants
from the pilot study, Stewart, had volunteered to continue with the study. By the end of
the meeting, five people had given me their names and phone numbers. The following
evening, I contacted each person by phone and discussed what the study would involve
in detail. During this phone conversation I wanted to get a sense of the person's
conversational skills to determine if they would be able to converse at a level that I felt
was needed. One person that I contacted had never been diagnosed with autism, a
criterion for participation, and another person decided that they did not want to
participate given the time commitment. The other three people were enthusiastic about
participating in the study. The next month I attended another AACT meeting and I was
able to recruit one more person. I then met with each participant, explained the research
in detail, and had each person review and sign an informed consent form (see Appendix
B). I was initially surprised by how willing people were to participate in the study, but as
most of the participants later told me, while some had been asked to participate in
clinical trials, no one had ever asked them to talk about their lives, to tell their stories.
The Participants
The participants were, as I had hoped, a fairly diverse group in terms of age and
life experiences, though they were all white and largely from middle/upper middle class
backgrounds. In this dissertation, I have chosen to present the stories of four of the five
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participants. After much deliberation, I decided that I could not adequately interpret and
tell the story of one of the participants. This participant was ill at ease having me
participate in his daily activities and preferred to meet for interviews. The stories he told
during these interviews were often rather 'unbelievable' to me and sometimes
contradictory, leaving me unsure how to make sense of what he was telling me. Because
of this, I was uncomfortable constructing a story about his experiences.
In Chapters Five through Eight, each participant's story is told in detail. What
follows here is a brief description of four of the participants, including information about
their backgrounds, occupations, and living situations so that their stories can be better
contextualized. In order to maintain confidentiality, the participants' have been given
pseudonyms and other potentially identifying information has been changed.
Ben: Ben, a 21 year-old college student, was living at home with his mother and
17 year-old sister at the time of the study. His parents had recently separated. Ben was
bom prematurely and received early intervention services. Though he was extremely
bright, Ben had great difficulty in school, socially and behaviorally. Professionals gave
him a variety of labels, including attention deficit disorder and emotional disturbance.
When he was 15 years old, he was finally diagnosed with Asperger's syndrome; later, he
was also diagnosed with autism. Ben's family was Jewish and upper-middle class.
During the study Ben was seeing a psychotherapist, a psychiatrist, briefly attended a
social skills group for young adults, and received life skills services funded by the
Department of Developmental Disabilities. Ben had been attending AACT for
approximately 4 months when I first met him.
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Ramina (Mina): Mina was 31 years old at the time of the study. Her background
is quite different from the other participants. She was raised by her mother in a poor
neighborhood (which Mina describes as "a white trash neighborhood") in a city about 60
miles from Los Angeles. Mina was diagnosed with autism at age 4 and received special
education services in preschool; she was later fully included in regular education classes.
At age 7, Mina was placed in foster care, and she spent many years being shuffled back
and forth to her mother. Mina struggled academically and dropped out of high school.
She later earned her GED. Over the years, Mina has held various jobs, including house
cleaning, cashier, and personal care attendant. She was married briefly and when I first
met Mina, she was living with her boyfriend and his family. Mina's lifestyle had always
been somewhat transient, but the months of the study were a particularly unstable time
with Mina moving five times. Mina's relationship with her family had always been
somewhat volatile and since her mother's death she has had minimal contact with family.
Mina attended only two AACT meetings due to transportation difficulties. Currently,
Mina is not working and she receives Social Security Disability Insurance benefits due
to depression and anxiety.
Stewart: Stewart had participated in my pilot research and two years later, at age
40, he volunteered to be in this study. Stewart was raised in an upper-middle class, non
practicing, Jewish family. Both of his parents had escaped Germany before the
Holocaust and were highly educated. Stewart was diagnosed with autism at age two and
he received intensive therapy and later attended private special education schools. He
earned his associate’s degree in music from a local community college. Stewart moved
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into his own apartment at age 25. Over the years he had a number of jobs, including
library page and courier, which his parents helped him to secure. Currently Stewart
works as a file clerk at a textbook distributor, a job that he has held for more than 13
years. Stewart's involvement in AACT was brief, since he did not feel that it met his
needs. Stewart's father passed away in 1998 and during the study Stewart's mother
moved to an assisted living facility near where his brother lives, approximately 2 hours
from Los Angeles. Stewart has had a long-term relationship with Jackie, a woman with
Tourette’s syndrome and mild developmental disability. Stewart sees a psychotherapist
and receives independent living services intermittently through the Department of
Developmental Disabilities.
Harold: At 58 years old, Harold was the senior participant in the study. Harold
was diagnosed with autism 10 years earlier and more recently received a diagnosis of
Asperger's syndrome. According to Harold, his mother had spent much of her life trying
to discover what was “wrong” with him. At age two, she was told that he had brain
damage and was encouraged to put him in an institution. She refused and because the
family was able to afford it, Harold was sent briefly to a special school for children with
disabilities. Harold's father was a diplomat; therefore as a child, he spent several years
living abroad. Harold earned a bachelor's degree in American History and a master's
degree in Library Science. He completed the course work for a Ph.D. in Library Science
did not complete his dissertation. Over the years Harold had difficulty finding and
maintaining employment, generally holding jobs for no more than a year. Thus he later
returned to college and earned two additional college degrees. Eventually, Harold began
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substitute teaching. During the study, Harold was considering returning to school to earn
his teaching credential is special education. He lives in his own apartment in a lower-
middle class neighborhood. His parents have both passed away and his siblings, with
whom he does not have a close relationship, live on the east coast. Harold is the
coordinator for AACT and is on the board of directors of the Autism Foundation, local
agency. While Harold does not currently receive any services, he participated in
psychotherapy for many years.
Learning from the Participants
Like most ethnographic researchers, I used a variety of methods to leam about
the lives of the participants. As the research progressed and I got to know the
participants, together we were able to collaborate and come up with strategies with
which we were both comfortable. My time "in the field" lasted eight months. By
participating over an extended period of time, I was able to develop an understanding of
not only what the participants did, but the meaning of their experiences and their
occupations (Emerson, et al., 1995; Spradley, 1980; Taylor & Bogdan, 1998). In
addition, extended time in the field allowed me to become familiar with the participants'
characteristics, use of language, and mannerisms (Biklen & Moseley, 1988). Though I
saw each participant approximately twice per month, my visits varied in frequency
depending on what was happening in the participants' lives. There were times when the
participants had events or issues going on that required more intensive involvement and
other times where they seemed to need some space from the study and from me.
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Establishing Trust and Rapport
My first step was to develop rapport and trust for as Lawlor & Mattingly (2001)
suggest, "relationships are central to the practice of ethnography" (p. 148). Developing
trust and rapport is essential as participants are asked to reveal highly personal, often
sensitive information about themselves and their experiences (Lawlor & Mattingly;
Taylor & Bogdan, 1998). Trust and rapport also is vital to the credibility of the study for
"rapport with informants determines both the quality of the data and the ability of the
researcher to represent the life experiences of informants" (Lawlor & Mattingly, p. 148).
As Taylor & Bogdan (1998) discuss, rapport develops over time and is likely to
be "tentative and fragile" (p. 48). I used a variety of strategies to optimize the researcher/
participant relationship, including spending extended time, giving participants ample
opportunity to ask questions, assuring confidentiality and anonymity, and sharing
personal information about myself (Bogdan & Taylor, 1982; Llewellyn, 1995). As in
most relationships, finding common ground is important in developing research
relationships. Surprisingly, this happened relatively easily with Stewart and Harold.
Stewart and I connected instantly around our love of music and we quickly found out
that our family background and political leanings were remarkably similar. Harold and I
found a strong connection in our love of exercise in general and tennis in particular, as
well as our overall concern regarding health. Mina and I were able to establish a
connection through our mutual interest in art, writing, and foreign languages. "Helping
out," as Taylor & Bogdan recommend, was an important means of developing a
relationship with Mina. I drove her places, helped her move, and, on occasion, lent her
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money to help her get through the month as her funds dwindled. For other participants,
returning phone calls promptly and arriving on time for appointments seemed to be a key
to building trust.
Establishing trust and rapport with Ben took more time. I feared that our age and
gender difference might pose a problem. Would a 21 year-old male feel comfortable
"hanging out" with a 40 year-old female? Though he was interested in being involved in
research studies, Ben made it clear to me that he was suspicious of professionals, "who
think they know everything about autism." With time, Ben came to see me not as
someone who knew, but as someone who wanted to learn, and I felt that he made great
efforts to help me understand his experiences.
Participant Observation
One method that I used to gather information was the traditional ethnographic
method of participant observation, which involved observing and participating in daily
activities and important events in the participants' lives over an extended period of time.
My level of participation varied from active participant to peripheral observer,
depending on the event and the participant. Over the course of the study I was a
participant observer in a wide range of activities, both ordinary and extraordinary,
including parties, religious activities, work, psychotherapy sessions, and social groups.
In social situations, I let each participant introduce me as they saw fit. In some instances
I was introduced as a friend, but more often I was proudly introduced as a researcher.
Harold always introduced me as a "Trojan" and, displaying his sense of humor, liked to
tell people that he was a "guinea pig" in my study.
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All of the participants suggested that we do things or go places together, just the
two of us. Going to a museum, playing tennis, and trips to used bookstores became an
important part of the research process. Each participant also wanted to show me places
that were significant in their lives. For example, Ben took me to the airport where he
learned to fly and Mina took me to the apartment where she had grown up, her first time
there in over 25 years. Engaging in occupations together and sharing experiences
provided a natural way of building a relationship. It was also a potent means of learning
about the participants' lives. While "doing together," the participants readily told stories
of past and present meaningful events and shared their hopes for the future.
Following each visit, I recorded fieldnotes, detailed, written records of what I
observed, experienced, and understood (Bogdan & Biklen, 1992; Emerson et al., 1995).
In my fieldnotes I included descriptions of the environment, the participant, practices,
routines, and interactions in order to obtain a "thick description" (Geertz, 1973).
Fieldnotes included reflexive comments, revealing my experiences, dilemmas, and
theoretical musings.
Interviews
In addition to participant observation and engaging in occupations together, I
conducted in-depth, open-ended interviews with the purpose of better understanding
participants' perspectives of experiences and meanings as expressed in their own words
(Taylor & Bogdan, 1998). The interviews took place at locations chosen by the
participants, usually at their home or a restaurant. Most of the interviews were
unstructured, more like "unfolding dialogues" (Beer, 1997), as I encouraged the
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participants to take the lead in the conversation. As the research progressed and my
research questions became more focused, I conducted semi-structured interviews, using
loosely developed interview guides.
■ My aim was to utilize narrative interviewing techniques, asking participants to
share stories of particular events. Narrative interviews are often utilized in qualitative
research since telling stories is a potent means of communicating experience, providing
rich description of meaningful experience (Mattingly, 1998; Mattingly & Lawlor, 2000).
Given discussion in the literature about the limited narrative capabilities of people with
autism as discussed in Chapter 3 ,1 was not sure narrative interviews would be
successful. However, I discovered that, like all people, some participants were better
storytellers than others. Each participant told stories in their own, often highly
idiosyncratic way. Stewart's stories were initially the most difficult for me to follow.
Loveland & Tunali (1993) note that anecdotal narratives may be difficult because they
require the speaker to "determine what information is important to present, organize the
information in a coherent way, select verbal means to convey the information so that it
will be understood and accommodate to the needs of the listener" (p. 254). Stewart's
organization of information and his choice of words often made it difficult for me to
follow along. But as I got to know Stewart, I became accustomed to his narrative
strategies and I believe he learned to accommodate to my needs as well. When I left the
field and began reading over the interview transcripts, I was amazed to see how Stewart's
narrative ability seemed to change over the time that I knew him. Perhaps the
opportunity to tell stories of his life helped him to develop this narrative skill.
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One strategy that I found particularly successful in eliciting narratives was using
personal artifacts, such as photos, objects, and creative projects. As Llewellyn (1995),
who studied adults with developmental disabilities, recommends, “a 'stroll' through the
family photograph album” (p. 117) provided a natural context for sharing stories.
Through these “strolls,” I was able to conduct more intensive life history interviews.
With Mina, who often talked very generally about her past, making a time line of her life
with me, or what G. Frank (1996) refers to as a life chart, helped her to identify the
events that mattered most to her. With some gentle probing, Mina was able to tell
detailed stories about her experiences and during this process she initiated showing me
family photos, which in turn led to more stories.
Though I had not planned to interview family members or friends of the
participants since my focus was on learning first-hand from the participants,
opportunities arose for informal interviews with significant others to take place. Stewart
encouraged me to talk to his mother so that I could learn more about his early history, of
which he knew only sketchy details. When Mina took me to meet her long time friend,
Robert, he immediately and with great enthusiasm launched into telling stories about his
experiences with Mina, stories I had not yet heard. It seemed he too had a need to share
stories.
I audiotaped all of the interviews and many of the events I attended. Audiotaping
provided me with an accurate, verbatim record. This was extremely important given, as I
mentioned, that each participant had a unique style of communication and it took me a
couple of meetings to be able to follow their conversation. Harold, for example, often
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talked very quickly and had a slight speech impediment, while Ben often talked softly
and slowly. Stewart used a great deal of metaphoric language, explaining his emotions
by using song lyrics, the significance of which I did not always understand immediately.
Having the opportunity to go back and listen to the tape and by transcribing the tapes
myself, I was able to listen carefully and become familiar with each person's
communication style. Subsequently I was better able to follow the interviews in the
moment.
Interestingly, the tape recorder became, in some instances, a third party. Harold,
for example, would repeat what he felt were his most important stories or comments,
talking directly into the tape recorder to be sure that his story was "heard." Though Mina
always made sure that the tape recorder was on when we began interviews or were
driving in the car together, there were times when she became self conscious and asked
me to turn the tape recorder off. On one occasion Mina became rather upset when my
tape recorder was not working properly and we were unable to record our conversation.
Documents and Artifacts
Another means of gathering information was through viewing written texts,
documents and other artifacts. This proved to be a rich source of information. The
participants willingly shared letters, medical reports, memorabilia, and other personal
artifacts with me. Harold was particularly interested in sharing aspects of his life this
way. Nearly each time we met, Harold had a folder full of information for me including
everything from psychological reports to income tax returns to social group calendars.
Mina, too, made sure that I not only saw important artifacts, but she frequently sent me
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home with recordings of music, things she had made, and, most importantly, her writings
and artwork.
E-mails proved to be a potent source of information. All of the participants used
the computer on a regular basis in their daily lives so it was a natural means of
communication. Harold and Mina, for example, e-mailed me on occasion to clarify
something that we had talked about in an interview or to tell me about an event that had
occurred. Other times they would forward on information and web sites that they
thought would be of interest to me.
AACT: A Social Drama
I had hoped to attend the monthly AACT meetings throughout the study for two
reasons. First, it was an important social setting for Harold and Ben, and I wanted to
observe their interactions with other people with autism. Second, I wanted to learn more
about the group itself. As an ethnographer, I was interested in learning more about the
culture of AACT. I had felt some trepidation about attending AACT meetings from the
start. Would members feel self-conscious or judged? Would the group censor what they
said? I was acutely aware that some members might see me as an authority, raising
issues of the powerful 'expert' and the powerless 'subject' (Oliver, 1992; Rioux & Bach,
1994; Ward & Flynn, 1994). I was a bit nervous at the first meeting, unsure of whether to
be primarily an observer or more of a participant. Should I initiate conversations or
should I just try to listen? Would I understand the conventions of the group? In spite of
my nervousness, I found my way, moving between observer and participant, though I
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found the experience exhausting. Generally people were friendly and asked me
questions about what I was learning. I left the meeting feeling more comfortable with my
role. However, the next day, Harold, who was the facilitator of the group told me, in the
most thoughtful way, that Laura, who attended meetings with her husband who has
autism and who, it seemed to me, took on something of the role of counselor/mother in
the group, did not feel comfortable with me taking notes. I continued to attend meetings,
leaving my notebook behind.
At the fourth meeting that I attended, an incident took place that made me aware
of the tension in the group. Harold, and some of the other members of the group, wanted
the group to be more structured, to include more educational and training opportunities
rather than just a social forum. To this end, Harold announced that he had invited a
psychologist, Dr. Goldman, to come to the next meeting and to act as a sort of "mentor."
This took some people by surprise. This excerpt from my fieldnote describes what
happened next.
No one said anything at first but then Shelly spoke up and said (paraphrased),
"Wait a minute. The whole idea of this group is that it is run by and for people
with autism. Why would we want a neurotypical2 to help run it? They'll probably
just come in and mess it up." A couple of others from the back of the room,
sitting next to Shelly joined in and someone said, "We like AACT the way it is.
We don't want a group run by neurotypicals." Harold tried to explain that he
needs help running the group and I think it was Bill who said, "why do you need
help? It's fine the way it is." Harold was a little bit exasperated and I think
surprised by this reaction. He explained that he does all of the work and that no
one else ever helps with anything. He also said that Dr. Goldman would help
them "with job skills and social skills." I could hear a few muttered comments
from the group in the back that that's not what the group is for and someone said,
2 Neurotypical (NT) is a term used by people with autism to refer to people who do not
have autism or other neurological disorders. I learned that this term was preferred over
“non-disabled,” since some people with autism do not see themselves as disabled.
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"Well when John and the others started the group it was for support and
advocacy, not to try to change us." There was definitely tension in the room.
Later, Shelly and I happened to be talking and she said that she hoped that she
had not offended me. I assured her that I wasn't offended and I asked if my presence
bothered her. She said no, I wasn't trying to impose my ways so that it was okay. While I
felt somewhat relieved, I couldn't help but feel that my presence might become
problematic.
Prior to the next meeting, I asked Harold whether or not he thought I should
come since I was aware that this might be a tense meeting with Dr. Goldman scheduled
to attend. He assured me that it was fine for me to come. Not many people were there
when I arrived. Some were talking quietly about the horrific events of September 11th;
while others were sitting alone. Laura arrived but she did not smile or greet me in any
way and I sensed that she was upset about something. She left the room quickly. My
stomach churned as I felt that my presence had something to do with her mood. I struck
up a conversation with Helen, a woman I had seen at one other meeting, but had never
talked to. She asked me if I was there with someone, perhaps wondering if I was a
caregiver or a personal attendant. I briefly explained who I was and she seemed a little
taken aback. Just then Harold came in and said, “Someone wants to talk to you.” Laura
was sitting in the waiting room area and I sat down next to her. She told me that she was
not comfortable with me being there and that a few others had told her the same thing.
My presence, she felt, was making people feel like they couldn't really be themselves
and that they were censoring what they did and said. Laura continued on, raising the fact
that I had taken notes, which she felt, was insensitive since AACT is the one place that
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many people felt that they could go without feeling judged. She questioned whether I
was taking advantage of Harold, who she said, clearly liked spending time with me.
Laura felt that since I did not have autism and was not related to anyone with autism that
I had no reason to continue to attend the meetings. Though I was not altogether
surprised, I was stunned by her vehemence. I could barely respond, in part because
Laura did not let me. I felt my eyes sting with tears and my stomach tense up. My worst
nightmare—I was the ugly researcher in her eyes. I was able to apologize for making her
uncomfortable and I began to provide her with an explanation of my intentions when Dr.
Goldman arrived. Distracted, our conversation was clearly over. I quietly gathered up
my things and left. Driving home, my tears began to flow and the rest of the day I
replayed the scene over and over. Part of me was relieved and recognized the validity of
what Laura was saying. But part of me felt wounded. Insensitive and disrespectful were
not qualities that I had ever been accused of.
Later that evening, Harold called, concerned that I had left the meeting. He
wanted to know what had happened. I gave him a simplified version, saying that some
people were not comfortable with my presence and that I felt it would be best if I didn't
attend. Harold insisted that Laura was not speaking for everyone and that Ben and a few
others who had seen me at the meeting, were wondering where I was. Indeed during my
next visit with Ben he wanted to know what had happened and he expressed his
disappointment that I was not coming back to AACT. I explained to Harold that even if
one person was uncomfortable with my presence then I should not be there. Relieved
that I was not angry, Harold said, "Thank you for responding in such a mature way."
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Harold filled me in on the rest of the meeting, which was contentious. A couple of
members were upset that Dr. Goldman was there, reiterating that there was no need for
help from neurotypicals. As a result, Dr. Goldman decided that she had no place at
AACT either.
My experiences at AACT, as painful as they were, were an incredible source of
information. I learned a tremendous amount about the group, the perils of being an
ethnographer, and ultimately, about myself.
Other Dilemmas in the Field
In qualitative research, the researcher is an essential part of the research process,
(Bogdan & Biklen, 1992; Streubert & Carpenter, 1995), a collaborator of sorts.
Observations were filtered through my eyes, and interviews were clearly co-created
experiences (Beer, 1997; Fontana & Frey, 2000), reflecting aspects of the participants'
experiences as well as my own. The stories that appear in this dissertation are based on
my interpretation. Therefore, it is important for the reader to know a bit about who I am.
It is likely evident that I am female, a doctoral student, and "neurotypical." I am
also culturally Jewish, middle-aged, married, and an occupational therapist. As an
occupational therapist I have worked with individuals with developmental disabilities,
including people with autism, for more than 12 years. Though a large of part of my work
has focused on children with autism, I have worked with people of all ages and at all
ends of the autism spectrum.
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My experiences as an occupational therapist made doing this research easier in
some ways and more difficult in others. Because I had worked with people with autism,
I was familiar with the clinical aspects of the disability and therefore was not surprised
or uncomfortable with the 'symptoms' of autism—lack of eye contact, 'self-stimulatory'
behaviors, or unusual language, to name a few. At the beginning I found myself jotting
descriptions of these behaviors in my fieldnotes as I found it hard to abandon the
therapist in me. As I got to know the participants, I found that I hardly noticed their
symptoms of autism. In fact, one day after my husband spoke with Stewart on the phone,
he commented on Stewart's unusual intonation and inflection. I was surprised by his
comment and asked him what he found 'odd' since I had become so accustomed to
Stewart's voice and how he expressed himself.
Switching hats from researcher to clinician became a challenge for me. Both
required such an intense emotional investment that I found myself weary. I was learning
so much in the field that I knew would impact how I practiced, but I wasn't clear how
quite yet. Eventually I made the choice to leave practice so that I could wear one hat—at
least for a while.
Because of my background in occupational therapy, I often felt the desire to
share strategies that I felt might be helpful, and the participants, from time to time,
sought advice from me. Ben, for example, experienced a lot of sensory processing
differences that caused him tremendous discomfort at times. During a phone
conversation, Ben asked me if I had any suggestions for coping with his need for
pressure touch. I told him about some of the strategies that other people with autism
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discussed in their autobiographies and brought him some materials to read. The therapist
part of me wanted to talk to Ben more about this and to help him develop his own
strategies. Struggling with boundaries, I decided not to and resolved that if he brought
this issue up again, that I would provide him with the names of other therapists who
might be able to help him.
Professional boundaries were not the only ones I faced. While at first I shared
only limited amounts about my personal life, I became aware that the participants
wanted to know more about me, and they began asking many questions. They wanted to
know where I lived, what I did in my spare time, and perhaps most importantly, they
wanted to know more about my relationships, especially about my husband. As I got to
know the participants and grew fond of them, I became more comfortable sharing
personal information and this helped to build a more genuine sense of collaboration.
As the time to leave the field approached, some of the participants (as I did too)
became concerned about what would happen next. Early on, Mina had asked me if we
would still be friends when the research was over. In making a decision about where to
move, Mina asked me if I would still come to see her if she moved away from Los
Angeles. Harold, too, wondered what our relationship would be after the study ended.
Nervously one day he brought this up and told me that he worried that I "might just
disappear." I assured each participant that I would like to continue our relationship, but
left the door open for him or her to initiate contact. Since leaving the field I have seen
Ben once and maintain contact with Harold, Stewart and Mina on a regular basis through
phone call, e-mails, and occasional visits or outings.
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From Data to Text
Ethnographic research involves an iterative process, a moving back and forth
between gathering information and analysis. Therefore, while I was in the field, I began
the analysis process. After transcribing the audiotapes and writing fieldnotes, I read them
carefully and began to write "in-process memos," in which I explored analytic
interpretations (Emerson et al., 1995). I also discussed portions of the texts and possible
interpretations with members of my dissertation group, a group of doctoral students, and
my committee chairperson.
Like all qualitative researchers, I left the field with what felt like mountains of
text to analyze, which was rather overwhelming. I questioned not only where to start but
what to focus on. I was concerned about what would be left out, recognizing that not
everything I had learned (or would learn) could be included in this dissertation. As I
immersed myself in the texts, reading and re-reading fieldnotes and transcripts, I became
more comfortable with the process. I read, jotted notes in the margins and began the
coding process, identifying salient themes, patterns, and contradictory information both
within cases and between cases. As Weiss (1994) suggests, I asked myself questions
such as what am I seeing instances of; what am I learning about; what questions does this
material raise? Themes related to occupation and meaning captivated me and I began the
recursive process of moving back and forth from the text to literature. Later, as I
immersed further, themes related to identity, specifically the construction of identity
emerged and I began to read the literature on this subject.
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While doing the initial coding, scenes from my fieldnotes and stories that the
participants told captured my attention. Often these were stories that the participants
initiated telling or ones that were told with great emotion. Other stories emerged as I
searched my transcripts. I began to see that these stories were part of larger narratives
and I realized that narrative analysis rather than thematic coding made more sense to me.
Narrative analysis, Polkinghome (1995) suggests, results in "an explanation that is
retrospective, having linked past events together to account for how a final outcome
might have come about" (p. 16).
I then began a systematic process of constructing a narrative of each participant’s
life. As I read the data, "plots" of identity construction began to emerge (Polkinghome,
1995). I sorted the data, attempting to develop a coherent, chronological account, a
procedure Polkinghome refers to as narrative shaping. I also looked for "turnings"
(Mandelbaum, 1973), where a person "takes on a new set of roles, enters fresh relations
with people and acquires a new self-conception" (p. 181).
During this analysis process, I came across “holes” in the stories or aspects of the
stories that did not make sense to me. To fill in and clarify, I set up visits with each
participant. At this time I shared my initial interpretations with the participants, who
were all interested, if not a bit anxious, to know what I was doing with all of this
information.J Their insights were a extremely valuable, enabling me to better make
3 Harold, the participant with the highest level of education, was at times skeptical about
the type of analysis I was doing, questioning the rigor of qualitative methods and offering
suggestions of how I might incorporate quantitative methods into this study. Our
discussions about this matter proved to be most interesting and over time, Harold began
to understand and trust that I would “make good” on the highly personal information he
had shared with me.
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sense of their experiences. My interpretation process continued as I began to write, for as
Richardson (1994) notes, “writing is also a way of 'knowing'—a method of discovery
and analysis” (p. 516).
My decision to write the dissertation as a series of stories was greatly influenced
by the work of Lawrence-Lightfoot, who uses a method she calls portraiture. She
describes this method as one “designed to capture the richness, complexity, and
dimensionality of human experience in social and cultural context, conveying the
perspectives of the people who are negotiating those experiences” (Lawrence-Lightfoot,
1997, p. 3). In portraiture, the emphasis is on “health and resilience” rather than on
“pathology and disease” (p. 8). In addition, portraiture emphasizes subtle details, the
particulars of a person, in hopes of revealing his or her “essence.” As Lawrence-
Lightfoot suggests, “the portraitist is very interested in the single case because she
believes that embedded in it the reader will discover resonant universal themes” (p. 14).
Writing these stories, however, was not a simple matter. I felt a great deal of
responsibility telling other peoples' stories. I wondered whether my representations
would adequately portray the participants in all of their complexity. Did I really know
enough about what their lives were like to write these stories? Could I, as a person
without autism, ever really understand their experiences? I wondered which stories I
should tell, for I quickly realized that each person's life was surprisingly complex, thus I
could construct numerous stories. As I pondered these questions I was reminded of an
incident with Mina that took place halfway through the study. We were at a hospital
trying to find out where Mina's medical appointment was supposed to take place and
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getting little help. Admittedly, I was getting frustrated but Mina seemed caught up in her
own thoughts. Suddenly she turned to me and said, “It must be interesting studying
me.... You can get an idea of what my life is like, but you can't really know until you've
been in my shoes.. . .Wouldn't it be neat if we changed places—you became me and I
became you—just for one day?” Unable to change places, the stories I present in the next
four chapters are my interpretation based on our co-constructed experiences described in
this chapter.
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CHAPTER 5
BEN'S STORY
Introduction
Constructing identities, as the literature suggests, is an ongoing, complex
process. For all of the participants in the study this process involved some sort of
struggle. This was particularly true for Ben, the youngest participant. At just 21 years
old, Ben was dealing with many of the same questions of identity with which others his
age grapple—who am I; where do I belong; how can I find a place in this world?
However, the challenges and stakes Ben faced, and continues to face, are very high.
Drawing largely from the work of the anthropologists Holland, Lachicotte, Skinner and
Cain (1998) and the literary scholar Bahktin (1981), this story shows that Ben’s greatest
challenge was learning to orchestrate the conflicting discourses of multiple communities
in order to “author” himself.
Eight Stories Up
My first meeting with Ben took place on a warm June day. We had arranged to
meet at his house, a lovely though a bit neglected house on the outskirts of a beach town.
Two old border collies and Ben's father, who I later learned had recently moved out of
the house, met me at the door. Ben came down the stairs, dressed in jeans and a tee-shirt.
He looked as if he had just woken up though it was noon and I knew that he had just
gone out to breakfast with his father. His face had an almost child-like sleepy expression;
his hair was tousled and his scanty beard unshaven. I soon got to know that this was
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Ben's usual look. Ben's 17 year-old, very punky-looking sister followed him down the
stairs. Ben did not introduce me to anyone and I felt a bit awkward standing in the
entryway.
After saying good-bye to his father, Ben led me into the living room. The
interview started off rather stiffly, with Ben providing only the briefest answers to my
questions and I quickly began to feel the heat of day. I considered ending the interview
early but there was something that made me think that Ben did not want me to leave; it
seemed that he had a story that he wanted to tell me. After about 20 minutes, Ben asked
if I wanted to look at some web sites about autism. Relieved, I followed him to an
upstairs office. As Ben was adeptly maneuvering on the computer, he began to talk. He
suddenly seemed more comfortable, as if the computer provided him a certain comfort
zone. Ben told me about his history of depression and panic attacks and his recent
attempts to find services to help him. Suddenly Ben said, "I don't know if I told you what
happened to me a month ago." He began to describe how he had become very frustrated
and angry and that he had begun to do more self-injurious things. I was a little confused
about exactly what had happened so I asked for clarification:
N: So this happened in April? Or something else?
B: No, what happened in April was worse. I got drained of all emotions and I
started to have philosophical thoughts. Dangerous.
N: Meaning what?
B: Meaning I was thinking about death.
N: Uh huh.
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B: And I went up to the top of the building where I was and I walked out. There
was a crenellation, and I walked out, sat on the crenellation with my legs over the
edge. Eight stories up. And I sat there for a while. And, I thought about jumping
off. And, I was really, like teetering, literally teetering on the edge. And uh,
eventually I called my therapist and luckily she was there and I talked to her and
I decided to come down and see her. And that's what I d id .. . . And I was
hospitalized two days, three days actually. And uh, that was that.
While Ben ends this short, yet dramatic story of his suicide attempt with “that
was that,” I learned over our next few meetings that this was not, in fact the entire story.
This event began to make more sense as I pieced together the story behind this story—
the story of what led Ben to the top of the building that April day.
Getting There
Ben remembers feeling “different” for most of his life. His earliest memory of
being different was as a young child having to wear a patch to strengthen a weak eye.
Wearing the patch made it difficult for Ben to see, interfering with his ability to play
more active games. As an elementary school student, Ben found school to be frustrating
since he was academically well ahead of his peers. He had little interest in other children
and was teased mercilessly. He preferred to entertain himself with science fiction books
and movies and physics problems rather than the typical games of his peers. Though
Ben's behaviors were puzzling to his parents and teachers, he was not diagnosed with
Asperger's syndrome until he was 15 years old.1 Instead, he was given various labels by
educators and psychologists, including attention deficit disorder and emotional
1 As Tantum (1991) writes, Asperger's syndrome may go undiagnosed in childhood.
However, the social deficits may become more pronounced in adolescence and young
adulthood “when successful social relationships are the key to almost every achievement”
(p. 148).
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disturbance. Ben remembers his parents and teachers encouraging him to “fit in,” to try
to make friends, to “act normal.” However, Ben saw no reason to fit in and thus he
resisted. He said, “people used to give me advice and tell me what to do but I was never
good at it. I didn't like people telling me to do certain things. I didn't want to do certain
things.”
As he got older, Ben began to want to have friends, especially a girl friend, but he
found it difficult to interact with others, often not knowing what to do or say in social
situations. Ben began to feel isolated, lonely, and depressed, and increasingly felt that
there was something "wrong" with him. He attempted to "act normal" as his parents and
teachers encouraged him to do, but he felt more depressed as a result. Eventually, Ben
was seen by a psychologist who diagnosed him with Asperger's syndrome.3 He then
started attending a social skills training group and other therapies. Ben remembers going
to these therapies, but not really feeling like he was getting much out of it, especially
since he had not achieved his goal of having a girlfriend.
When Ben was 18, he met Grace through an on-line chat group. He described
Grace as “probably being on the spectrum too.” Her father, an engineer, had high
functioning autism, and Ben told me, “reminded me of me in a lot of ways.” This was
Ben's first experience meeting others who he felt were like him. He described feeling at
Depression is often reported in the literature on Asperger's syndrome and high
functioning autism. Klin et al. (2000) reported that children with Asperger's and high
functioning autism are at greater risk for depression and anxiety than the general
population In a study of adults with Asperger's syndrome, Tantum (1991) reports that
35% of the subjects met the criteria for a psychiatric diagnosis other than developmental
disorder.
3 Later, Ben would be diagnosed with autism. Like many people, Ben sees the labels as
interchangeable and he uses both terms to describe himself.
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ease with Grace since he didn't need to vigilantly monitor his behavior. Grace became
Ben's first love. Ben wistfully described the relationship to me: “She was real responsive
to me and I was responsive to her. We were always really affectionate to each other. And
we used to spend hours in bed talking to each other. It was like a lot of fun.” Like many
first loves, the relationship had its ups and downs and eventually ended. Ben was
devastated.
By this time Ben was attending a prestigious college majoring in physics. Being
on campus became almost painful since everyday he faced situations that reminded him
that he did not fit in. Ben's depression and anxiety worsened. With encouragement from
his parents, he began seeing a psychiatrist, who prescribed medication for his depression
and anxiety, and referred him again to a social skills group and to psychotherapy to help
him cope and learn ways to 'fit in.'
In addition to therapies, Ben began experimenting with new ways of fitting in.
He tried self-medicating with marijuana, alcohol, and prescribed medication to "take the
edge off' in social situations. Another way was "pretending to be normal" by
consciously attempting to control his behavior in public.4
I used to ... yell out loud or spin around or do a lot of things like that. Um, don't
know why. But it was like a release of energy. I had this bad habit of grinding my
jaw which I sort of picked up uh because it was something that I could do that
people wouldn't really notice and that was what I was-—I wanted to I think—I
wanted to do things that people wouldn't notice. ‘Cuz I wanted to fit in; I didn't
want to stand out.
Ben started using the phrase "pretending to be normal" after reading Willey's (1999) book
by that title and hearing her speak at a conference. Willey is herself a person with
Asperger's syndrome.
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Unconvinced that the medication and therapies would really help him, Ben
adopted, as he says, “a cure mentality,” hoping that scientists might find a way to
eliminate autism. He began to imagine ways that, in the future, technology might be used
to change his brain. He wished for “brain scanners that could see chemicals so we could
inject drugs directly, like diabetes” and the ability to replace neurons “until eventually
your whole brain is replaced.” Ben related his interest in nanotechnology to his desire for
a cure: “Why I'm interested in it [nanotechnology] is for, I guess, call it personal reasons.
’Cuz I um want to learn about the technologies that I'll be able to use to improve
myself.”
Ben found that he could "pretend to be normal" for a short time but it became
very stressful. As Ben explained:
That [trying to fit in] was a big cause of depression. I mean I realize—I didn't
know it. I didn't really know. I mean I knew that I was lonely.. . . A lot of it was
due to just stress building up in the day.. . . All that just got held in and everyday
I would come home depressed, every single day. After around, you know, when I
got home—sort of like it all comes out after I get home.
Ben became increasingly depressed and prone to panic attacks. He began to feel
that his attempts to fit in would always be failures and he was more convinced that he
would never be able to “be normal”—that he wouldn't be able to make friends or have
another intimate relationship. Ben described how he turned his feelings inward and
began to hurt himself: “When I get frustrated, so I don't know, I get this feeling when I
get frustrated, I hit my head. Sometimes banging it on the wall makes it [the frustration]
calm down. Um, I know it's not a good thing.” It was in this state of mind that Ben made
his way to the top of the building that April day.
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This story of how Ben came to consider suicide is really a story about struggle.
Specifically it is a story about the struggle to construct an identity. Identities, or self-
understandings, are actively constructed in shifting networks of social relationships
(Holland, et al, 1998; Kondo, 1990; Mishler, 1999; Polkinghome, 1988). People
represent themselves through the voices or the words of others, the discourses both of
specific individuals and communities (Bahktin, 1981; Holland et al.). Discourses can be
imposed on people through hierarchies of power. Holland et al. refer to "positionality,"
the way that individuals are positioned with respect to rank, status and power. Inevitably,
they conclude, "persons look at the world from the positions into which they are
persistently cast" (p. 44).
As Ben listened to the voices around him, he found himself persistently cast in a
marginalized position. Within the discourse of “normalcy,” Ben was a failure. A person
with a disability is considered successful when they listen to the voices and conform, or
at least make an effort to conform, to act “normal” (Swain & Cameron, 1999).
Authoritative voices label and marginalize individuals who look or act in “undesirable”
ways. As a young child Ben was relatively unconcerned with fitting in, remaining fairly
content engaging in the activities of his choice. However, as he got older, Ben became
aware of the authoritative voices around him, those of teachers, doctors, and his parents,
that told him that in order to have a meaningful life, he would have to “act normal.” He
would need to act in certain ways and engage in certain practices in order to be accepted.
Though Ben had a brief respite from this world during his relationship with Grace,
eventually he found the voices of others becoming his own, his “inner speech” (Bahkin,
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1981). Ben's sense of self was constructed within a world that clearly let him know that
he was a marginal member. As Swain and Cameron (1999) eloquently state:
From the viewpoint of disabled people, then, their personal and social identities
have traditionally been formed within a framework from which they have been
excluded. In defining the parameters that state emphatically what disabled people
are not (i.e. 'normal'), the dominant cultural discourses determine that disabled
people's self-reference is measured against this (p. 75).
Like many others with disabilities, Ben became “tangled up in various forms of
self-oppression” (Swain & Cameron, 1999, p. 75). Ben's attempts at self-punishment
climaxed on that April day as he literally teetered on the edge.
Finding the ’Aspic' World
Following his journey to the top of the building Ben spent a few days in the
hospital. He recalled that this time gave him a sort of respite from his everyday life and a
chance to have his medications regulated, but he was unsure how he would resume
living. However, the day after he was discharged from the hospital, Ben attended a local
autism conference, which was, Ben says, "really was a big change for me. A new way to
look at the world. It sort of gave me, uh, a whole different worldview. It was nice. It
made me feel a lot better."
At the conference, Ben attended a session on Asperger's syndrome and came
away with a new way of understanding himself:
And, uh, it was nice to um, to hear this guy talking about different features. ’Cuz
I'm like real intellectual. I was always interested to learn like the technical things.
I was learning a lot of technical things. A lot of things I didn't know about
myself.. . . It just helped me to get a better understanding of myself.
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Hearing this doctor talk about the neurological aspects of autism helped Ben to
construct a new life narrative, to reframe his experiences and behaviors. He was
particularly interested in learning more about sensory processing issues and self
stimulation. Ben became aware that his actions, given his neurological make-up, were "a
normal part of my experience" instead of shameful or deviant.
Not only did Ben gain a deeper understanding about his symptoms and the
neurological reasons for them, but he also met other people with autism, people who
were no longer "pretending to be normal," people living what Ben saw as an “authentic
life”:
I went and saw a lot of speakers. And they were really interesting. And it sort of
gave me, you know, people were talking about their experiences And it made
me feel that I didn't have to, you know, go through life uh, you know, pretending.
That really wasn't healthy.
He continued:
Basically, I sort of got off the, the whole cure mentality ’cuz before that's what I
was—always wanted a cure. But after the conference I wasn't so much focused
on a cure. Or I was thinking of Asperger's as like this horrible thing that was like,
you know, causing me to have deficiencies and really couldn't—to function
normally, but rather I came to see everything in a different light where it was
more like, you know, the Asperger's is like really more integrated into my,
myself, my personality is not really something you can separate out. And you
know, it was like, you know, I am who I am and, you know, that it really should
be okay for me to be who and what I am. Because I sort of saw by example sort
of ’cuz there were other people talking about the same thing.. . . There really is
basically no way to teach yourself to be more normal. Uh, you can teach yourself
to appear normal but you can never really be more normal. And trying to do it is
just stressful. I think that's everybody's experience.
By coming in contact with other people with Asperger's syndrome and high
functioning autism and hearing them talk about their experiences, Ben saw that his
experiences were, in a sense, “normal” for people with autism. His comment, “that's
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everybody's experience,” shows how important it was for Ben to feel a part of a group
that shares experiences. At this conference, Ben was exposed to a new of thinking and
being, a new way of understanding himself, and a new community—what Holland et al.
(1998) call a “figured world.” Skinner et al. (2001) define figured worlds as “historical
and social phenomena into which individuals enter or are recruited and which are
reproduced and developed by and through the practices of their participants” (para. 11).
Figured worlds are “recognized fields or frames of social life” (Holland et al., p. 7). In a
figured world, discourses, activities, and artifacts come to have unique meanings.
Figured worlds are social worlds, with certain actors (people) and actions valued over
others. Identities, according to Holland et al., are constructed in these figured worlds,
worlds mediated by relationships of power. Identities are crafted through participation in
activities, and by voices of actors (discourses) becoming part of one's consciousness or
inner speech.
People are a part of multiple figured worlds and thus have multiple identities.
Figured worlds include such diverse worlds as academia, 'the world of romance,' and
Alcoholics Anonymous (AA). To illustrate this concept, Holland et al. (1998) present a
detailed description of the figured world of AA (also see Cain, 1991). In AA, there is a
shared understanding of what it means to be an alcoholic. People construct an 'alcoholic'
identity through participation in specific practices, such as the hearing and telling of
personal stories. Artifacts, such as poker chips have unique meaning, symbolizing
sobriety, not gambling.
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The figured world that Ben discovered was the “Aspie” world, as Ben and others
often referred to it. The Aspie world is made up of people with Asperger's syndrome and
high functioning autism. As Holland et al. (1998) emphasize, figured worlds are
historically situated. The emergence of the Aspie world can be linked to three historical
trends: 1) the emergence of the labels of high functioning autism and Asperger's
syndrome; 2) the emergence of the disability rights/self advocacy movement; and 3) the
explosion of computer technology, specifically the Internet.
As discussed in Chapter 3, the diagnoses of high functioning autism and
Asperger's syndrome are relatively recent phenomenon. Prior to the 1980s, individuals
considered high functioning often went undiagnosed (though they were considered
“odd”) or were given other labels, such as Pervasive Developmental Disorder Not
Otherwise Specified (PDD-NOS). The second historical trend that gave rise to the Aspie
world was the self-advocacy movement. The self-advocacy movement for people with
developmental disabilities started as part of the civil rights movement in the 1970s.
According to Shapiro (1993), the self-advocacy movement “is the parallel cry of self-
determination by another group of disabled people rebelling against being long
underestimated, deprived of choices, treated as eternal children, and thought to lead
lesser lives” (p. 185). People First, the first self-advocacy group in the United States,
began in 1974. It included individuals with a variety of developmental disabilities,
including autism. Since the 1970s, the self-advocacy movement has grown rapidly. In
1974, there were fourteen self-advocacy groups in the United States. By 1994, 505 self-
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advocacy groups were identified (Ward & Myer, 1999). These groups address individual
and group advocacy and also provide a forum for social and recreational activities.
Self-advocacy, specifically for individuals with autism, began informally in the
1980s, often with small meetings at conferences and newsletters. In the early 1990s,
formal self-advocacy groups began as adults with autism recognized that their needs
were not being adequately addressed by organizations headed by parents of children
with autism (Ward & Myer, 1999).
It is here that the self-advocacy movement and the emergence of computers and
the Internet coincide in the formation of the Aspie world. The use of computers has
opened up lines of communication for people with high functioning autism and
Asperger’s syndrome, allowing them to form networks for advocacy and support (Ward
& Myer, 1999). As Singer (1999) suggests, “the internet has begun to do what was
thought impossible-—to bind autistics together into groups, and it is this which will
finally enable them to claim a voice in society” (p. 67). Freed from the constraints of
typical ways of perceiving and interacting, individuals with Asperger’s syndrome and
high functioning autism make contact with others, share stories, provide support. Blume
(1997) sees the Internet as an important “tool of identity” (Hannerz as cited in Holland et
al., 1998) for the Aspie world. In an article in the New York Times, Blume writes: “In a
sense, autistics are constituting themselves as a new immigrant group online, sailing to
strange neurological shores on the Internet” (para. 6). While people with Asperger’s
syndrome and autism have developed many web sites, Autism Network International
(ANI), founded in 1992, is perhaps the most widely recognized on-line group. While
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some self-advocacy groups are facilitated by a non-disabled person (Shapiro, 1993),
ANI is run solely by people with autism. Some of the other on-line groups run by people
with autism include chat rooms only open to people with autism, Asperger's syndrome,
and “autistic cousins.”
The Aspie world, like other figured worlds, is not a specific place but rather a
network of people who co-produce discourses, activities, and artifacts (Holland et al.,
1998). Their discourse provides an interpretation of what autism is and what it means to
have autism. Autism is seen as a neurological 'difference,' not an illness or disability.5
People with autism are considered worthy individuals, not people who need to be cured,
changed, or isolated from the world. Autism is seen as a fundamental part of who they
are, not just something that they have; if their autism was eliminated, they would not be
the same person. The symptoms of autism as described by professionals, for example,
unusual, restricted interests, are not seen as problematic, but rather something to be
valued. According to ANI (2000) "autistic people have characteristic styles of relating to
others, which should be respected and appreciated rather than modified to make them 'fit
in.'" In essence the discourse suggests that autism is, like other disabilities, socially
constructed (Hahn, 1985; McDermott & Varenne, 1995). The 'problem' is not the person
with autism, but the constraints of the social world.
For Ben, hearing these voices, the discourse of the Aspie world at the conference,
gave him a way to reinterpret his life, to reframe who he was, to construct a positive
5 Mixing neurological metaphors with computer metaphors, I often heard people with
autism describe their “wiring” or “circuitry” as different from others.
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identity as a person with autism. Instead of looking for a cure and trying to fit in, Ben
began to conceive of a meaningful life as a person with autism.
After the conference, Ben found ways to join the figured world of Aspies through
Autistic Adults Coming Together (AACT) meetings and through the Internet. AACT,
which Ben had attended in the past, took on new meaning, becoming a place, a sort of
haven, where he could be himself. He explained that AACT is “a place where people
didn't care what you [do]. As far as nobody thinking you're weird or anything like
th at.. . . it's no pressure, no pressure to conform or anything like that. It’ s just—be
yourself.”
In a figured world, activities are co-produced so that there are specific activities
and ways of doing things. In the Aspie world, activities were not constrained by the
conventions of the discourse of normalcy. For example, socializing at AACT meetings, I
came to learn, involved practices that I did not originally perceive as social. Socializing
was not always done in the conventional ways to which I was accustomed—with small
talk, eye contact, back and forth conversation. Indeed small talk was rarely heard. “What
is the point of asking 'how are you?' if you don't really care and the person is just going
to say Tm fine,”’ Ben asked me one day. Conversations at AACT were sometimes one
sided, with one person talking at length; at other times conversations were dialogic and
animated, sometimes even heated. During one meeting, a group of young men, including
Ben, engaged in an animated discussion about space propulsion, a conversation that was
far too complex for me to follow. Socializing did not necessarily require conversation,
rather just being in proximity to others. At one meeting, I watched Ellen, one of the
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AACT regulars, as she sat alone in a room adjacent to the meeting room looking
contentedly at books. When I asked her later what she liked about the meeting, she
answered me matter-of-factly, “socializing with others.” I must have looked confused
because she immediately offered an explanation: “We don't have to talk. We can just
share energy to be social.” Socializing as such made sense in the Aspie world.
For Ben, this was a relief. At the first meeting that I attended, Ben had his laptop
with him and he skillfully maneuvered to various websites related to nanotechnology. If
others came by to look, Ben was happy to show them what he was looking at, but he was
content just being with others and not having to, as Goffman (1963) calls it, manage his
stigma. Socializing in the Aspie world gave Ben the freedom to be himself.
The Aspie world also developed "tools of identity" (Hannerz, as cited in Holland
et al., 1998), which AACT members, including Ben, often used. Perhaps most
immediately evident to me was a lexicon of types, the words used to not only identify
themselves, but also others. Thus people identified themselves as "Aspies," "autistic
cousins" (those with a related diagnosis or "autistic-like"), or "autistic" (not, as is
considered politically correct, a person with autism). While everyone on the spectrum
was acknowledged, I did sense something of a hierarchy of power, with those considered
high functioning awarded positions of power. In fact, there were some AACT members
who wanted to limit the group to those considered to be high functioning. This did not go
over particularly well. Harold, the facilitator of AACT was particular incensed by this
suggestion. Harold quipped, "What are we going to do? Ask people to show their
diagnosis at the door?"
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In addition to a lexicon to describe people on the spectrum, I soon found out that
there was a word for people without autism: “neurotypical.” At AACT, while
neurotypical was sometimes used in jest, I quickly learned that the term was more often
not an affectionate term. In some ways, neurotypicals were viewed as oppressors—in
essence, the enemy. During discussions, AACT members often shared stories about the
insensitive way neurotypicals treated them. They also commiserated about the puzzling
behaviors of neurotypicals. At one meeting Penny, a regular at AACT meetings, shared a
story with the group. Penny had attended a national autism conference and there she met
people, both Aspies and neurotypicals, who took a trip across the border to Mexico to do
some shopping. In a fieldnote I describe what happened next:
Penny explained that this 'fiat guy' (she said, “you know the type—loafers and
Izod shirt), who apparently was the father of a child with autism went. He
apparently spoke fluent Spanish but didn't let on to the merchants, so Penny did a
lot of the talking in Spanish. On the way back to the conference, the man made a
comment about how she talked in a monotone. He said to her (and Penny did a
great imitation), “That doesn't surprise me because you people have a tendency
to talk in a monotone.” Penny told the group that she was very offended by the
comment. She kept saying, “why would he say that? I can never understand
neurotypicals!”
In addition to AACT, Ben accessed the Aspie world through the Internet—web
sites, list-servs, and chat rooms developed for and by people with high functioning
autism and Asperger's syndrome. In cyberspace, Ben was able to “talk” to others from all
over the world, including others who were relative newcomers to this figured world.
Hearing others share stories about how “showing the more autistic side of them,” or
being authentic, “made them feel better,” gave Ben confidence to try out this new way of
being, to test out this new identity.
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Well, I decided that I'm not going to try and really pretend to be somebody I'm
not. I'm not going to pretend to be perfectly normal. You know, if I feel like
acting a certain way, makes people uncomfortable, whatever, well you know, it's
my prerogative. You know, they're bothered by it and I don't know, it's just I feel
like I kind of have to do what I have to do. And you know, and so with that in
mind I—my life has gotten a lot easier.
Through continued participation in the Aspie world, the voices of others were
becoming part of Ben's consciousness (Skinner et al., 2000) or as Bahktin (1981) calls it,
his “inner speech.” Now with a new sense of self, instead of feeling powerless, Ben felt
that he had choices in how to live his life. No longer ashamed of who he was, Ben chose
to "come out" as a person with autism. Coming out, a phrase borrowed from the gay and
lesbian literature, for Ben meant the process of reconstructing his personal identity and
embracing autism as a valid, positive social identity (Swain & Cameron, 1999). As part
of coming out, Ben found ways to express his Aspie identity through simple symbolic
acts. For example, on his car Ben placed a bumper sticker that asked "Why Be Normal?"
Ben also added an AACT tee-shirt to his collection and often wore it in public venues.
It seemed that Ben wanted to share this new world with me, so on a number of
occasions he offered to show me autism web sites. One site in particular that Ben was
fond of was called "Institute for the Study of the Neurologically Typical," a site
developed by an individual with autism. He showed me the page that described
"Neurotypical Syndrome" as "a neurobiological disorder characterized by preoccupation
with social concerns, delusions of superiority, and obsession with conformity." We both
laughed as Ben read this aloud. Ben then showed me a page displaying the "The
Diagnostic and Statistical Manual of 'Normal' Disorders," a clever parody of the DSM-
IV definition of autism. Lastly, Ben showed me a "Neurotypical Screening Test," which
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he had previously completed. He was pleased to show me that his scores did not fall in
the neurotypical range. He was an Aspie.
The Challenge of Orchestrating Voices
Ben's story, unfortunately, doesn't end here—happily ever after—for identities
are constantly revised and negotiated (Holland et al., 1998; Kondo, 1990; Mishler,
1999). During the time I got to know Ben he began to experience tension between the
discourses of the communities in which he lived and constructed his identities—his new
found Aspie world and the neurotypical world. For Ben, the neurotypical world where he
lived with his family, went to college, and received therapy services was an inescapable
space of identity making. He continued to hear the authoritative voices reminding him
on a daily basis of the importance of fitting in and of his marginalized position. He also
heard the voices of the Aspie community that reminded him that he could live a
meaningful life as a person with autism. For Ben, the hard and complicated work of
orchestrating voices and self-authoring (Bahktin, 1981; Holland, et al., 1998) was just
beginning.
Orchestrating voices involves sorting out, juxtaposing, mixing, and hybridizing,
in Bahktin’s (1981) terms, the voices or discourses that are part of one's inner speech. As
Holland et al. (1998) point out, the process of authoring the self, of "sorting out and
orchestrating voices is much more than sorting out neutral perspectives in some
rationalist's argument; the voices, after all are associated with socially marked and
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ranked groups and even with particularly potent individuals" (p. 183). Bakhtin (1981)
describes the process of authoring the self:
The importance of struggling with another's discourse, its influence in the history
of an individual's coming to ideological consciousness, is enormous. One's own
discourse and one's own voice, although bom of another or dynamically
stimulated by another, will sooner or later begin to liberate themselves from the
authority of the other's discourse. This process is made more complex by the fact
that a variety of alien voices enter into the struggle for influence with an
individual's consciousness (just as they stmggle with one another in surrounding
social reality) (p. 348).
Thus, for Ben, it was not merely a matter of choosing one voice over another, but
rather discovering how to orchestrate these voices, and, in the process, author himself.
Instead of seeing his choices as black or white—choosing one world over another—Ben
would need to discover a way to see himself in both worlds, and perhaps, enter other
worlds as well.
Ben began to realize that while he could be himself and not have to monitor his
actions in the Aspie world, being in this world was not enough. What Ben was realizing
is that while autism was one identity, he needed to construct multiple identities through
experiences in multiple communities or figured worlds. Though his feelings of
depression were returning, he began, with the encouragement of his family and therapist,
to 'try out' other figured worlds, worlds with practices and discourses that were not
focused on autism. Though non-religious, Ben decided to explore his "Jewish side" and
attended activities run by a Jewish organization on campus. He also joined Mensa, an
international group for people whose IQ is in the top 2% of the population (Mensa,
2002), and nervously began attending events involving playing board games, one of
Ben’ s favorite activities.
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On one of my visits, Ben invited me to come with him to a Mensa game-playing
event. Though initially somewhat intimidated by this prospect of being in a room of
highly intelligent people, Ben convinced me to go, assuring me that it was "bloodless
gaming." Right away, it was evident to me that Ben had located another figured world, a
world with unique practices, discourses, and artifacts. We were the first people to arrive
at the funky home of Rachel, the host for the afternoon. She quickly acquainted us with
the practices of bloodless gaming: people come and go; play is non-competitive; people
can say and do what they want; eating is essential; and everyone is expected to make a
contribution for refreshments. Though initially Ben seemed shy and awkward, as soon as
he caught sight of a full-sized videogame machine in Rachel's kitchen, his demeanor
changed. He and Rachel discussed the wonders of videogames, which was completely
lost on me, and soon they got into a discussion about the Harry Potter and Hobbitt books.
Other people started to arrive and we began a game of Scrabble, which Ben kindly
suggested, since I had mentioned that it was my favorite game. Four of us played, and
everyone, including Ben, seemed to be enjoying themselves. In my fieldnote I noted:
Once or twice Ben got up from the table and walked quickly over to the
videogame machine to play a quick round of Centipede. He played with great
intensity, focus and enthusiasm, reminding me somehow of a young child. It was
as if he needed the release of energy to maintain his focus on the Scrabble game.
I noticed as we played that Ben occasionally rocked gently, but I didn't sense that
he was particularly stressed. I was glad to see that he didn't feel that he had to
monitor his behavior. No one seemed to notice his rocking or other 'self-stims'
that Ben was often self-conscious about. It seemed that many of the Mensa
members had their own quirks.
A month after the Mensa experience, Ben seemed less optimistic, less sure how
to orchestrate the discourses around him. The tension between the neurotypical world
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and the Aspie world seemed heightened. As a result, Ben was experiencing a lot of
discomfort—depression, anxiety, and sensory overload, and he desperately wanted
relief. Ben explained the feelings to me:
They're feelings that just get too powerful. It's not so much feelings like
emotional feelings but it's like physical, physiological.. . . Like a real common
feeling for me is sort of feeling pressure; it's like outward pressure.. . . It makes
me crazy sometimes. I just don't know what to do.
These feelings became so intense that Ben found it hard to concentrate on
anything else. While he continued to attend AACT meetings and participate in on-line
chat groups, he was finding it increasingly difficult to see the positive aspects of having
autism. On a day he was feeling particularly uncomfortable Ben said to me, "If this is
what it means to be autistic, then it sucks." Ben was also disillusioned with the medical
world, feeling that professionals "don't have a clue what it's like." The constant
"experimenting" with medication Ben found particularly problematic as his moods and
energy level fluctuated significantly.
These feelings did not diminish and within another month, Ben was even more
depressed. I met Ben at a restaurant for lunch and I could immediately see that he was
not in good shape:
When I arrived at Cody's, Ben was already there, sitting at the bar. He had a dark
beer, half finished, sitting in front of him. I greeted him and immediately noticed
that Ben looked agitated—his leg was shaking rapidly and his face looked almost
pained. I noticed a raw spot on his forearm and body odor, as if he hadn't been
bathing. I asked him how he was and he said, “my mind is fragmenting.”
Over what proved to be a very difficult lunch, Ben haltingly told me, “I'm in so
much pain ’cuz I know I'm going to be alone forever. What kind of a life is that?” Ben
talked about how, if he identified with the Aspie world, he could envision a world where
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he could be himself, but this seemed like a very lonely place. Ben desperately wanted a
girlfriend, something that he did not see happening in the Aspie world. Exasperated Ben
told me, “I read a study. Like 70% [of people with autism] expressed interest in sex and
stuff, but only about 10 or 15% are expected to have like any kind of relationship. And
even a smaller number are expected to like get married and stuff.” Sarcastically he
added, “So, it kind of suggests a little problem.”6 Ben did not see much hope of finding a
girlfriend in the neurotypical world either: “Even if I was capable of having a
relationship, it's just too hard to meet somebody. You know it's like I might have a heart
of gold but there's no way for people to know that. All they see is the autism.” We
discussed ways that Ben could be in the neurotypical world without having to “act
normal ” I reminded Ben of his experience at Mensa, which he admitted, had worked out
well. But on this particular day, Ben was unable to imagine himself living in multiple
worlds with multiple identities.
During lunch I grew increasingly concerned about whether Ben might attempt
suicide. Ben acknowledged that he was thinking about it, but assured me that they were
only thoughts, that he would not act on them. I made sure Ben got home safely,
following him in my car as he drove home. A week later, Ben's mother called me to tell
me that Ben had been hospitalized after over-dosing on some old medication.
6 Though Ben's statistics were a bit exaggerated, his point was well taken. In Ousley and
Mesibov's (1991) study involving 21 adults with high functioning autism, approximately
20% of males expressed interest in sex, with only 8% having any sexual experience.
Romantic relationships are relatively uncommon in adults with high functioning autism.
Craig’ s (1998) study was one of the most optimistic. He reported that 63% of the people
in his study were single and not dating, while 22% were married, divorced, or widowed,
and 15% were dating or in a steady relationship.
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Ben's struggle with self-authoring continued over the last few months of the
research. There were times that Ben seemed more content, involved in his physics
classes and excited about talking about the latest advances in space propulsion. It was as
if Ben had glimpses of possible identities, ways of being in the world, but these identities
were often fleeting.
During my last visit with Ben we took a walk by the beach. Ben was even more
quiet than usual. He was on winter break from school and feeling rather lonely and
bored. I did not talk much either as I wanted to give Ben the space he seemed to need.
Ben's occasional comments suggested that he was spending a great deal time creating
fantasy worlds. Ben told me about a recent dream he had where he had shape-shifting
powers:
I was a shifter and I had multiple consciousness and I was flying around and it
was sort of like being in a big altered world. There were lots of like holograms
and those were the different streams of consciousness and I sort of could take
them all in at once.... So I had these huge, expanded senses. So it's—that's one
of the things I really want to do.... One of the cool things about being a shifter is
you can break pieces of yourself off, change them, and do lots of things.
I left Ben that day with a heavy heart. I had come to like and appreciate Ben as a
remarkably insightful and sensitive person, and it was hard for me to see him in such a
depressed and lonely state. Though my story ends here, I take some comfort in knowing
that Ben's story of constructing identities will continue, the ending unknown because
identities are constantly being revised as life unfolds. As Holland et al. (1998) state, "We
are reminded how unlikely it is that one's identities are ever settled, once and for all.
Dialogism makes clear that what we call identities remain dependent upon social
relations and material conditions" (p. 189). Constructing identities takes time and
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experience in social worlds. "Conceiving oneself as an agent whose acts count in, and
account for, the world cannot happen overnight" (Holland et al., p. 285).
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CHAPTER 6
MINA’S STORY
Introduction
As Ben's story illustrated, constructing identities is not a simple process, but
rather ongoing and complex, in many ways, hard work. To construct identities, people
use a variety of strategies, including narratives. Telling stories, particularly stories about
one's life, is a “means by which identities may be fashioned” (Rosenwald & Ochberg,
1992, p. 1). But there are other kinds of stories that are important in this identity work.
People draw upon a variety of stories to construct their identities, including cultural
narratives (Bruner, 1990; 2002; Mattingly, 1998; Novitz, 2001; Polkinghome, 1988),
myths (McAdams, 1993), and fantasies (Person, 1995). Though individuals with autism
are often reported to have limited imagination and narrative abilities (Bruner &
Feldman, 1993; Capps & Sigman, 1996; Loveland & Tunali, 1993; see Chapter 3), in
this chapter we will see how, one woman, Mina, has very imaginatively used narratives,
both fictional stories and life stories to craft, enact and revise her identities. Mina's story
also highlights the importance of belonging and illustrates that participating in the
valued occupations of communities is an essential aspect of constructing identities.
The Story of the Gypsy Autistic Girl
As I got to know Mina, one of the first things that I learned about her was that she
loved stories. In fact, part of Mina's reason for volunteering to be in the study was
because she was intrigued that I wanted to hear the stories of her life. Ever since she was
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a little girl, Mina has made up and written many stories. However, there is one story to
which Mina has continually returned—the story of the Gypsy autistic girl. It is this story
that has inspired her identity work. Over the years, Mina has written variations of this
story; however, all involve similar characters and a similar plot line: the Gypsy autistic
girl is helped by a kind, older Gypsy man. Early on in the study Mina introduced me to
one of her stories saying, “It's actually about me when I was little. Or what I wanted my
life to be like.” Though the excerpt below (which I have minimally edited) is from a
story Mina wrote as an adult, it is much like the ones she began writing when she was 14
years old.
The Telephone
By Mina Reed
Leon, Salina's uncle and a full Gypsy, bought Salina a talking telephone. It was
one of the latest items to promote speech in babies and toddlers, and he hoped
that it would inspire six -and-a-half year old Salina to finally talk. It had many
features—a gentle operator's voice that asked questions, and it even had little
cheerful tunes to sing along to! Salina, however, was listless, rocking to and fro
in her chair.
"Look what I got for you, love," Leon gently whispered to her.
Leon lifted her off of her little chair and walked over to the armchair, sitting with
her in his lap. She twisted, groping onto his scarf. Leon patted her back, letting
her settle in. He lifted the phone out of the box and placed it on Salina's lap. The
tiny girl looked dumbfounded as Leon, smiling, eyes twinkling, gave a
demonstration, showing her how to hold the receiver and talk. Salina gazed up at
him.
"Telephone, dear, it's like a real telephone we use." He searched her eyes, smile
deepening. He hoped that some of what he said registered. "That's my girl," Leon
urged, guiding her fingers to the keys. "Here," he said handing her the receiver,
guiding it to her ear.
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There was little reaction. She just coyly and silently held the receiver to her ear.
She did one thing, however; she reached down and pushed another button just as
she had seen Leon do. He beamed, as she saw when she met his continual gaze.
"What is the nice lady asking you, honey? Can you answer her? Go on, talk to
her." He urged her on, hopeful. Yet he knew it would come in its own time.
She looked forlorn now. Leon pushed another button. This time, Salina heard
music. "Aaaah," she vocalized, grinning in her unusual way. Leon knew she
wasn't retarded, but severely autistic.
"You like the music, don't you, honey?" Salina bopped up and down, grabbing on
to his scarf, after smacking another button, still chortling and gurgling. Leon just
smiled. He could see the joy and that was all that mattered for now. He could see
she was starting to get the gist of it as well. She held the receiver to her ear with
no guidance now. Now she searched his eyes. Still smiling, eyes a-twinkle, he
said, "Yes, yes, there's my girl. You are a good girl. I love you."
When I read this story, I was puzzled. What was the significance of this story?
Why Leon, the Gypsy hero character? Why this plot line? Why didn't she borrow a
cultural narrative and imagine herself, for example, as a popular girl at school, or better
yet, a princess? As I came to know more about Mina's life, her "Gypsy autistic story," as
she referred to it, began to make sense, and I discovered how her story was an essential
part of the crafting of her identities.
In some ways, Mina was the girl in the story. At age four, exhibiting many classic
signs, Mina was diagnosed with autism. She was also, by blood, part Gypsy. Mina's
father, who abandoned Mina and her mother when Mina was only 6 months old, was an
English Gypsy. But the similarities between Mina's life and her written narrative end
here. Mina's childhood was, in fact, nothing like the warm scenes depicted above.
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Instead of growing up part of a community, well loved and nurtured, Mina grew up
"abused, neglected, and lonely."
Mina's mother, who was young, attractive, and a binge drinker, was not in any
way prepared to raise a child like Mina. As an infant, Mina was sent to live with her
aunt. When she returned to her mother at age two, Mina was physically and emotionally
abused and often left on her own for long periods of time. By age seven, she was placed
in foster care. Her foster mother was also abusive, so much so that Mina nicknamed her
"Nazi Martha." Over the years, Mina moved back and forth between the foster home and
her mother's home. She felt that she had no support "except for the occasional soft
hearted female teacher." Mina tried her best to fit in, capitalizing on her imitation skills,
what she called her "acting skills." However, teased at school and abused at home, she
felt terribly alone. Her only comfort was to retreat to fantasy, to create make-believe
worlds where life was better.1
Mina began by finding photos and drawing pictures of people, mostly men, who
she thought looked kind and caring. These pictures became a great source of comfort.
She carried the pictures with her, even slept with them. However, when her mother found
the pictures, she tore them up. Mina later wrote about this incident:
When my own mother learned I slept with pictures of faces, she destroyed them.
'This is why you do so poorly in school, isn't it?'... She ripped them up in front
of me, laying in bed, still half awake. She wanted to rob me of all comfort. I went
into shock.... The next day, Gloria the janitor, very sweet hefty Mexican-
American lady helped me tape back the remainders I snuck out of the trash. I was
only able to salvage some.
1 Turning to fantasy as a coping mechanism is reported by other individuals with autism
(see for example, McKean 1994; Williams, 1992).
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Mina's other means of creating fantasy worlds was through writing stories. Her
first stories, fashioned after conventional cultural narratives, were about having friends
and involved scenes of playing happily with other little girls. Later Mina began to write
her Gypsy autistic stories. For Mina, writing stories about Gypsies became crucially
important to her sense of hope. Though her mother often told Mina that her father was a
"low-life" who "could steal the eyeballs out of your head," he, and by extension, the
Gypsies, became, as Mina told me, "the imaginary somebody of my dreams who would
find me acceptable and love me."
The culture of the Gypsies resonated with Mina in many other ways. Her life had,
in fact, been Gypsy-like. The Gypsies have always lived a nomadic lifestyle. Indeed,
throughout their history, the Gypsies have been travelers. Scholars believe that this
group likely originated in northern India in the 11th century and later moved to the
Middle East. They worked in various trades, as metal smiths, horse traders, and
entertainers. In the 14th century, in fragmented clans, they moved north to Europe.
Misnamed "Egyptians" by the Europeans, their English name was later shortened to
"Gypsy." In the 15th and 16th centuries, Gypsy clans spread to all areas of Europe,
including England, Spain, and Scandinavia. By the 19th century, Gypsies were migrating
to North America (Clebert, 1963; Fraser, 1992; Godwin, 2001; Stewart, 1997).
The Gypsies have always been considered outsiders. Though they live within a
dominant culture, they remain independent and are highly mistrusted. The history of the
Gypsies is marked by misunderstandings and animosity between themselves and non-
Gypsies, the "gadje." Wherever they emigrated, they lived on the margins, both
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economically and socially. At various times in their history, the dominant culture has
persecuted the Gypsies; their customs have been outlawed, and they have been forced
into slavery, tried for heresy, and sterilized against their will. Considered an alien race by
the Nazis, approximately half a million Gypsies perished in the Holocaust. Even today,
feelings about the Gypsies run deep. In 1998, Vladamir Meciar, the prime minister of
Slovakia stated, "Gypsies are asocial, mentally underdeveloped and incapable of social
adjustment" (Patrin Web Journal, 2002). Unlike the Jews, the Gypsies have never sought
to form their own country. They remain scattered across the world, the majority
remaining in Europe, where they make up the largest minority group on the continent.
Though they are a fragmented group, they retain a common language and many common
customs. In spite of their tumultuous history, the Gypsies have survived, even flourished
(Clebert, 1963; Fraser, 1992; Godwin, 2001; Stewart, 1997).
Part of the mistrust of the Gypsies is due to their seemingly exotic and
"antisocial" lifestyle (Godwin, 2001). Gypsy life is lived in the present; the past and the
future are not of great importance. Gypsies value enjoyment of life. Flexibility in
employment is preferred to wage laboring and formal education is not emphasized.
Music, dance, and storytelling, however, are highly valued in the Gypsy culture. Strong
family ties and group loyalty contribute to the view of the Gypsies as insular and
unfriendly. Families often share small living quarters and thus spend a lot of time
outside. Money and food are shared with members of the community rather than saved
(Clebert, 1963; Fraser, 1992; Godwin, 2001; Stewart, 1997).
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For Mina, aspects of the Gypsy culture—freedom, family, community—things
she had never experienced—were appealing, even romantic. But other aspects of the
Gypsy way of life reflected her own experiences. Like the Gypsies, Mina had lived a
nomadic life, moving in and out of various homes. In fact, Mina never felt like she had a
real home. In addition, Mina felt unwanted and undesired, an outcast. Her rituals and
obsessions, and different way communicating and interacting often led to
misunderstandings and ridicule. As Mina told me, her family saw her as “asocial and
defective.” Mina clearly had never fit in to the mainstream culture. Having autism and
being “poor white trash” positioned her firmly on the margins. Her life, like the Gypsy
life, was a hard one.
Mina's Gypsy autistic story then was both about her lived life and her hoped for
life. In her story, instead of being the lonely, abused autistic girl, Mina dreamed about
becoming the loved and nurtured Gypsy autistic girl.
Constructing Identity through the Enactment of Narratives
While many people use narrative to create fantasies and hoped for futures, Mina’ s
Gypsy autistic story did more. Her story became something she enacted—her way of
crafting herself as a Gypsy. As Mattingly (2002) notes, identity-making is a narrative
practice that includes acting out stories, especially stories that engender hope. Just as
cultural scripts, those that tell one how to dress, act, and speak to become a certain
person, may be enacted, so too can fictional narratives. Stories then provide not only
motivating images for “possible selves” (Markus & Nurius, 1986) but they can also
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shape lives and be a “guide for future action” (Garro & Mattingly, 2000, p. 17). As
Person (1995) notes, plot lines of fantasies can be incorporated into life plans and can
become a template for behavior. Just as experiences guide what stories are told, stories
can guide the making of experiences. Garro and Mattingly write that, “powerful stories
can shape future actions in decisive ways” (p. 18). Enacting stories and constructing
identities involves action, doing something in particular, or engaging in occupations. As
we will see in the next section, Mina carefully chose and orchestrated particular
occupations to enact her narrative and to become a part of the Gypsy community.
Becoming the Gypsy Girl
When she was 14 years-old, Mina first acted out her Gypsy autistic stories as she
played alone in her room. However, as she got older, Mina embraced this narrative and
consciously and creatively worked at living it out. Over the years, Mina engaged in
various occupations and practices, including learning about the Gypsy culture through
books and music, locating a Gypsy community, learning the Romany language, living
the Gypsy lifestyle, and practicing Gypsy customs.
Learning A bout the Gypsies
Mina first began learning about the Gypsies as a teenager. Everything about the
Gypsies fascinated her—the history, the language, the rituals, the lifestyle. As an adult
Mina developed a small collection of books and articles about the Gypsies, as well as
CDs of their music. She became very knowledgeable and over time, taught me many
facts about the Gypsies. During the study, many of my visits with Mina focused on
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finding books about Gypsies. We searched on-line and made a number of trips to used
bookstores and to public libraries in pursuit of old, out of print books. Once we located
books on Gypsies, Mina would sit and read for long periods of time, mesmerized. Her
interest, however, was not just intellectual. As she came across pictures, she examined
them closely, looking for signs of herself in the faces of the people. “Do I look like
them? Is my skin the same color?” she asked. She also looked at the faces, searching for
signs of kindness. “Doesn't he have kind eyes? Don't you think he'd be a nice person?”
Mina queried, hoping to find the caring people she wrote about in her stories.
Locating a Community
Part of Mina's enactment of her narrative involved locating a community. Mina
dropped out of high school and at age 18, ran away from her foster home. While living
with an acquaintance, she became involved in activities at a Gaelic Center, where she
met people who lived what Mina called "an alternative lifestyle," many of them
"camping out" in a loft at the Center. Mina eventually joined them. For the first time in
her life she felt like she was part of a community that cared about her. "These were my
first real friends. I was carefree and happy," Mina told me. One of the people who
became her friend was Ian, a man quite a bit older than Mina. Ian, who had "English
Gypsy roots," took Mina under his wing. He told her stories about living with the
Gypsies, and encouraged her to read more about the Gypsy life. Ian gave her a book
about a Gypsy boy, which she read over and over again, a book she still cherishes. A
couple of years later, Ian invited Mina to go with him to England. Mina told me, "he was
going to build a caravan and we were going to travel in it."
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Excited about the idea of going to England, Mina earned money for the trip by
selling subscriptions to a newspaper and selling things at swap meets. This activity
brought her into contact with members of the Green family, a large, local Gypsy family,
well known in the area. She explained:
Some of their family were fortune telling down there [at the swap meet] and I got
their number and I called them up and did some free babysitting. Then I met the
family through that. I got to know the kids first and then I, then I met Thomas
and Eva when they came over to cook dinner one night and I attached myself to
them and then I moved in with them.
Being part of a Gypsy community was what Mina had longed for. Though the
Greens lived the "rough life," (they often had run-ins with the "gadje" and the law), she
was happy to be accepted by them. She made herself useful, helping to take care of the
children and assisting with cooking and other chores. Mina felt especially pleased when
one night, Thomas, the patriarch of the family, told her, "You have a home for life.
You've found your people."
Within months after meeting the Greens, Mina had enough money saved for her
trip to England. She and Ian lived outside of London and she worked in a small store.
There she met Victor, a young man who was a “Tinker,” an Irish traveler and “part
Gypsy.” Just as Mina had longed to be part of a Gypsy family, she had longed to meet
and fall in love with a Gypsy. For the first time in her life, Mina thought that she loved
someone. Within a few months, Mina and Victor married. Though the marriage was not
a happy one—Mina described it as “a real abusive relationship”—Mina loved living in
England. She felt peaceful there, far away from her childhood memories. Like she had
with the Greens, in England, Mina felt connected to a Gypsy community. Victor,
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however, wanted to live in the United States so Mina moved again.2 After traveling
around America for a while, the Greens invited the couple to live with them and Mina
resumed her life as part of the Gypsy community.
Learning Rom any
Another important occupation in the crafting of the Gypsy identity was learning
Romany, the Gypsy language. As Stewart (1997) notes, learning Romany is an important
way of being accepted as part of the culture. He writes, “Knowing Romany shaped
identity because of the relationships this involved one in .. . . It was by relating as an
equal with other Rom [Gypsies] that one established one's shared identity” (p. 59). For
Mina, learning the language was an enjoyable project for she had always loved words
and had an affinity for languages. She learned Romany from the Greens, from Victor,
and from others. When Mina and I found the Romany dictionary at the library, Mina
excitedly photocopied much of it so that she could study at home. She bought audiotapes
of people speaking English Romany so that she could develop an authentic accent and
practiced often. As she became more fluent, Mina began to write portions of her stories
in Romany. She translated children's books into Romany and proudly told me that she
wanted to become the author of the first children's books in Romany.
Living Like a Gypsy
Living like a Gypsy was also an important part of enacting her story and creating
a Gypsy identity. Familiar with the nomadic lifestyle from her childhood, Mina
continued to lead a transient life. With her friends from the Gaelic Center, Mina lived in
2 Upon reflection, Mina believes that Victor married her for a green card.
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a loft and later traveled in a van to Canada. Her many moves included a stint in
Washington state, England, New York City, and various places in Southern California.
During the study, which was a particularly unstable time in her life, Mina moved five
times, each time discarding possessions so that she would be more mobile. I assisted
with these moves, often carting boxes of dishes and clothes to Goodwill. Unhappy with
the city life (Mina often described Los Angeles as “a hell hole”), Mina ended up living in
fairly remote places, much like the Gypsies who often lived in low-rent housing on the
outskirts of town, apart from the "gadje" (Godwin, 2001; McLaughlin, 1980; Stewart,
1997). It was not uncommon for Mina's living quarters to lack basic comforts. One
place, for example, had no heat; another apartment had no bed so Mina slept on the floor,
"camping like a Gypsy." One of Mina's moves was to a secluded area where old friends
from the Gaelic Center lived. There, a couple of miles down a dirt road, Mina lived in a
small trailer that, as Mina was quick to point out, resembled a Gypsy wagon. Though
run-down, Mina worked hard to turn this into a clean and comfortable home, just as the
Gypsies do. She spent many days painting and scrubbing. She artfully hung lace
curtains, put up pictures, and carefully displayed her most meaningful possessions,
among them photos of her Gypsy friends and her books about Gypsies. I was amazed at
how completely Mina was able to turn the trailer into a home, much like the Gypsy
homes Clebert (1963) describes: "Interiors are often so neat and clean that one could 'eat
off the floor.' The radio sets, the curtains on the windows and the bright furniture make
them respectable homes" (p. 182). Wherever Mina lived, she managed to transform it
into neat, clean quarters. The cleanliness of her environment was so important that Mina
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would often ask me, "Does it look clean," "Is it somewhere you would live if you had
to?" While Mina cherished her private space, she preferred to live with others. Wherever
she moved, Mina sought to create a sense of community with others who lived on the
margins as well. Sharing food, resources, eating meals together, and just co-existing
were an important part of living the Gypsy life.
Economically, Mina lived like a Gypsy as well. Over the years, Mina held a
variety of jobs, including house cleaning, child-care, sales, and personal care attendant.
Her employment was usually short lived; sometimes she was fired for not working
quickly enough, though more frequently Mina left because she was moving and had
enough money “to get by.” During the study, Mina was living on Social Security
Disability Insurance (SSDI), a mere $800 a month. Because money was often tight,
Mina became skilled at shopping for bargains and bartering. Though I was happy to treat
her to an occasional meal, Mina always felt the need to give me something in return—
clothes that no longer fit, dolls she had made, or a picture she had drawn.
Another aspect of living like a Gypsy involved carrying out the customs.
Dressing like a Gypsy was very important to Mina and I soon came to recognize her
“Gypsy look”—skirts below the knee, peasant type blouses, dressy sandals, gold hoop
earrings, bracelets, and make-up that accentuated her large brown eyes and thick lips.
Mina was very particular about how she looked and she frequently commented on my
dress. “You dress like a student. The way I used to,” she would tell me. Often she would
give me suggestions as to how I might change my appearance to “look more
sophisticated, like a Gypsy.”
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Mina carried out aspects of the Gypsy purity code, a complicated set of unwritten
taboos related to cleanliness that extends to relationships, food, and hygiene (Godwin,
2001; McLaughlin, 1980; Stewart, 1997). For example, Mina was careful about the use
of her towels. She explained that using the same towel for the upper and lower body was
forbidden since the lower body, specifically the genital area was considered unclean.
Wearing skirts that covered her legs, clothing washing rituals, and keeping her body
clean as well as "pure" for marriage were all important. Failure to do so would mean that
Mina was "polluted," "defiled," or as the Gypsies call it, "mahrime" (Godwin;
McLaughlin).
For many years, Mina felt that her enactment of her narrative was successful for
she had, in many ways, crafted herself as a Gypsy. She felt that she had become the
loved and cared for Gypsy girl of her story. Reflecting back on the time when she was
living with Victor and the Green family, Mina said, " I thought I had it all. I thought I
found happiness. I was part of a family and I felt loved. I thought I had no more
problems and everything was going to be okay."
An Unforeseen Event
Enacting narratives, especially fictional narratives, however, can not be so easily
accomplished. As Mattingly (1998) points out, "In the world of fictional narratives,
narrators often not only know the future (how things turned out after all) but also what is
in the minds of various characters" (p. 39). But life as a narrative, unlike fictional
narratives, is unfolding. We do not know what others are thinking or how stories will
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end. Plots then must be continually revised (Polkinghome, 1988, 1991). As MacIntyre
(1981) argues, it is impossible to be the sole author of one's narrative, rather at most we
can become "co-authors." Other people and unforeseen events inevitably get in the way
and, in essence, alter the plot. As in all narratives, life inevitably involves some sort of
struggle or breach (Bruner, 1986, 1990), an unexpected turn of events. These breaches
then disrupt the continuity of identity construction. "Detours" inevitably take place
(Mishler, 1992, 1999). These detours can be planned, but are more often accidental, the
result of unexpected events.
Indeed Mina's enactment of her narrative and the crafting of a Gypsy identity was
interrupted by an unforeseen event. Within months of moving in with the Greens, Mina's
relationship with her husband, Victor, deteriorated. Though separated, they both
continued to live with the Green family. Mina began spending more time with Thomas,
the patriarch of the family. She was teaching Thomas to read (like many Gypsies,
Thomas was not formally educated), and he was teaching her American Romany. They
often stayed up late studying. Thomas began making sexual advances and being
somewhat naive, Mina did not, at first, recognize what was happening. But as Thomas'
remarks and gestures became more overt, Mina became frightened. Unsure what to do,
Mina turned to Thomas' wife, Eva, for help. Eva, however, claimed that Mina was trying
to seduce her husband. Mina explained, "they [the family] thought I was flirting and I
didn't even know how to flirt, you know, I didn't know anything about social cues."
3 Failure to pick up on social cues is well reported in the clinical literature. Indeed much of
the discussion around the theory of mind hypothesis in autism centers around this issue
(see for example Baron-Cohen, Tager-Flusberg & Cohen, 1993).
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Accused of violating the Gypsy code of behavior, Mina was forced to leave the house.
Essentially she was expelled from the Gypsy community.
This event devastated Mina. As Polkinghome (1991) notes, when the operating
plot of a narrative breaks down, one's identity is inevitably is shaken. For Mina, as her
narrative fell apart, she began to feel depressed, unsure of who she was. How could she
still be a Gypsy if there was no community to acknowledge her as such. For a brief time
she found some solace taking care of a man with Multiple Sclerosis, for she found that
she was remarkably skilled at carrying out various medical procedures. However, when
he died, Mina became despondent. As Foote (quoted in Markus & Nurius, 1986) notes,
"when doubt of identity creeps in, action is paralyzed" (p. 956). Her depression
worsened, and like Ben, Mina contemplated suicide and was hospitalized on and off over
the next couple of years. During this time, Mina filed for divorce and she lost all outside
ties to her Gypsy identity.
Revising the Narrative
Despite her depression, Mina soon realized that she still wanted to “be someone.”
In order to reconstruct her self, Mina had to revise her narrative. Maintaining the basic
plot, Mina revised her character. First, she changed her name to Ramina (Mina) (her real
name was Stacey) in order to distance herself from her past.4 Next, still feeling desperate
to be a part of a community, to feel loved and accepted, instead of crafting herself as a
Gypsy woman, Mina crafted herself as a Jewish woman. The Jews, Mina explained,
4 Interestingly, changing names is a common Gypsy practice (McLaughlin, 1980).
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were in many ways like the Gypsies—a historically nomadic group, with strong sense of
community, rituals and traditions. Mina used many of the same strategies that she had
used to construct and enact her Gypsy identity—she located a community by attending
synagogue, learned about the culture, collected artifacts, studied Hebrew and Yiddish,
and even briefly kept kosher. Feeling better, Mina began to participate in activities at the
Gaelic Center again. There she met Josh, a young Jewish man. They began to date and
this relationship strengthened Mina's connection to the Jewish community. In many
ways, Josh (and his family) became the kind, romanticized, heroic character in her
narrative.
Claiming Autism
During the time that Mina was constructing her “Jewish self,” she became very
aware of how “different” she was—-how her thinking and actions were affecting her life.
She realized that she had been disconnected with her past and her “autistic” self. She
said, “I had been in denial about my autism.. . . I knew that I had autism but I didn't
think about it much. I thought, 'Well, I can talk. I'm fine.' I started to find quirks—all this
stuff I tried to bury.”
Some of Mina's “quirks” began to make sense to her as she learned more about
the diagnosis of autism. It came as something of a relief to Mina when she realized, for
example, that her hypersensitivity to sound and touch, and her tendency to interpret
things literally were common characteristics in people with high functioning autism (see
Gillberg & Coleman, 1993; Omitz, 1974; Grandin, 1995; McKean, 1994, 1996;
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Williams, 1994, 1996).5 She discovered autobiographies written by people with autism,
such as Temple Grandin (1986; 1995) and Donna Williams (1992; 1994).6 Reading their
stories, Mina realized that, in many ways, she was like them. “It was nice,” Mina told
me, “to know that there are other people like me. I haven't known any autistic people.”
Inspired by their autobiographies and determined to “put the pieces” together, Mina
returned to writing. This time, instead of writing about a wished-for life, Mina began to
write about her past, her experiences as an abused child with autism—her autobiography.
Gullestad (1996) notes that, “writing one's autobiography is a way to step back
and take stock of one's life.... A significant aspect of this writing process is usually to
address questions such as “who am I?” and “how did I become the way I am?” (p. 4).
Autobiographical writing can be healing, “where healing involves making sense of past
events” (Mattingly, 1998, p. 12). Telling or writing stories of one's life may be an
especially meaningful way for people who are ill or disabled to “give voice” to their
experiences (A. Frank, 1995). While autobiographical writing concerns the past, it is
5 Though it was somewhat reassuring for Mina to learn about autism, it also raised a lot of
fears. She was concerned that her "thinking problems" were a sign of mental retardati on.
She feared that she was "autistic plus low intelligence." This dreaded identity became a
major preoccupation throughout the time I knew Mina and we spent a great deal of time
talking about this. While it is not a part of this story, it is a significant part of Mina's life
story.
6 Temple Grandin's autobiography (Grandin & Scariano, 1986), the first published
autobiographical book by a person with autism, provided the first in-depth insider
narrative o f the autism experience. This account challenged many notions about autism
and as Sacks (1995) writes, Grandin's book had “a sharp and salutary effect on medical
and scientific thinking, allowing (indeed requiring) a broader more generous concept of
what it might mean to be 'autistic' (p. 12). Mina found Williams' life stoiy, which involved
physical and emotional abuse, to be more similar to her own and thus she felt more of a
sense of kinship with Williams than with Grandin who grew up in a wealthy and rather
privileged family.
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also about the present and the future. As Carr (1986) suggests, autobiographies are
“concerned with the past in order to render it coherent with or comprehensible in terms
of a present and a future” (p. 75). Autobiographical writing then, the telling of life
stories, plays a significant part in the crafting of identities, crafting who we are and who
we will become.
In her autobiography, Mina writes about her early memories—her intense fears,
her fascination with words, her inability to verbalize her thoughts, her desire to connect
with others. In many ways, it is about claiming her “autistic self.” It is also a story about
survival, affirmation, and hope as Mina's title page for her autobiography poignantly
illustrates.
Mina's Story
My personal account of a battle with of [sic] both autism and dyslexia
The touching, haunting, but extraordinarily remarkable autobiography of an
autistic. She has beat the odds. .. A must read!
Coming Full Circle
As Mina worked on her autobiography, she began to think more about her life—
her past, present, and future. Once her relationship with Josh ended, Mina realized that,
though she liked thinking of herself as Jewish, this identity was not one that she could
enact. She told me, “I knew I wasn't really Jewish, but I needed something. It was sort of
an escape. In my heart I knew I was a Gypsy. It's in my blood.” Thus once again, Mina
revised her narrative in order to be a Gypsy girl. This time, however, Mina's story was
not just about being a Gypsy. Her revision was, in fact, a return to her original
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narrative—the story of the Gypsy autistic girl. Seeing herself as marginalized, but a
survivor, Mina was determined to be both Gypsy and autistic. With both humor and
pride Mina told me one day, “I have the double whammy of being Gypsy and autistic.
Hitler wanted to kill both of them.”
It was during this time of revising her narrative that I got to know Mina. Her
identity work involved engaging in many of the occupations that she had used in the past
to construct her identities. She read about Gypsies, spent time relearning Romany, and
represented herself as a Gypsy, now not only dressing the part, but sporting a tattoo on
her ankle that said simply "Gypsy." Mina also read about autism, finding herself in the
descriptions. She let herself "be autistic," especially in private, finding pleasure for the
first time in some of what she had always thought of as her "odd behavior."
Locating a community, however, was a bit more difficult this time. Living in
remote locations and relying on others for transportation, Mina did not have direct
access to the Gypsy (or autistic) community. To create a family, she therefore relied on
her imagination and created fantasy worlds, much as she had as a child. Mina found
pictures of Gypsy men and often carried them with her, looking at their faces for signs of
kindness and encouragement. The people in the pictures became her companions and the
characters in her new Gypsy autistic stories.
Leon, the character in "The Telephone," was one of Mina's main sources of
comfort during the study. With some embarrassment she told me,
I talk to him [Leon] all the time. You know how I like have a relationship with
pictures and stuff. Very few people know that. It's one of my autistic things... I
pretend that he can hear me and he fills a gap when I talk to him .. . . I tell him
everything. He's like a companion.. . . He keeps me company all the time.
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Sometimes we play together. I pretend that I'm the baby and he protects m e.. . .
He represents my dream too.
In addition to writing stories and "playing" with her companions, Mina drew
pictures of these Gypsy friends. I was amazed at how remarkably detailed her drawings
were and how they artistically captured the warmth and caring that she found in these
people’s faces.
During the last month of the study, Mina moved once more, this time to a house
that she shared with two friends. Here, for the first time, she had access to the Internet.
As it was for Ben, the Internet allowed Mina to become part of a "virtual" community.
On the Internet she found information on autism; she joined Gypsy organizations and
participated in chat groups. Mina soon began actively corresponding with Gypsies,
creating what she called "my cyber-family."
In many ways, though not intentionally, I played a part in Mina's construction of
her identity, becoming something of a "co-constructor" as I helped facilitate Mina's
participation in her identity-making occupations. For example, we made excursions to
bookstores, libraries, and discount stories. I answered endless questions about autism
and provided her with articles to read. In fact, much of what we did together was
reminiscent of Clark's (1993) description of occupational storytelling and story making.
Perhaps more importantly I became an audience for Mina's enactment of her narrative.
Not only did she delight in telling me stories of her past, often remarking, "This is
getting fun now," but she took pleasure in having me witness her Gypsy and autistic
identities. For example, one day as we were doing errands, Mina gave me an impromptu
lesson in Romany.
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Mina: There are certain words in Romany that I like. Don't a lot of people with
autism like to say words over and over? I like the Romany word 'lav,' the word
for word. Lavo lil means word book.
Nancy: Yeah? It's pretty.
Mina: Yeah. It sort of trips off your tongue. You say it.
Nancy: Lavo lil.
Mina: Pretty good.
Nancy: You say it much better.
Mina: Not bad, huh? (laughs) Especially for being autistic!
Future Identities
Currently, Mina spends most of her time enacting her narratives and engaging in
the occupations of particular communities, occupations that contribute to the crafting of
her identities. While mainly concerned with the present (which, she reminds me, is the
Gypsy way), she does contemplate the future. Certainly her Gypsy autistic narrative
provides inspiration and hope. She plans to finish and hopefully publish her
autobiography. This project is not only for herself but also for others like her. She told
me, "I want to help others with autism. Those of us who didn't get all the breaks." Her
other goal is to save money and return to England. There, Mina hopes to reconnect with
her real Gypsy roots, but she also hopes to meet a Gypsy man to marry. She does not
want to marry "any old joe." When I asked her what she hopes for in a husband, she
hesitated a minute and said, "He's Gypsy, educated. And he knows I'm autistic and
supports me. Not money, emotionally. And he cherishes my writing and stuff. It's
important to me."
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Conclusion
This chapter illustrates how the concepts of narrative, occupation, community
and identity are intertwined. Mina not only created her identities through narrative, but
she enacted them by engaging with others and in specific occupations within particular
communities. Since fictional stories are difficult to enact, Mina was forced to revise her
narrative when her fantasy collided with real events. Like Ben, it is unlikely that Mina's
identities are settled once and for all, for identities are always changing. It is, however,
likely that her identity work will continue to be largely a narrative practice involving
writing, telling, enacting and revising stories.
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CHAPTER 7
STEWART'S STORY
Introduction
As the previous stories have illustrated, the construction of identities involves
locating and becoming part of a community. Communities, groups of people who share
experiences and practices, not only offer narratives that contribute to one's life story (and
hence identity) (MacIntyre, 1981), but they also afford people the opportunity to engage
in acts of self-recognition and the opportunity to be seen by others (Myerhoff, 1986).
Identities as such are not given, but rather are bestowed in acts of social recognition
(Berger, 1963).
Belonging to and being recognized by a community is not always a simple task.
Individuals with disabilities, who are often marginalized, are likely to be identified
primarily by their diagnostic label or perhaps more dangerously, treated as invisible
(Myerhoff, 1986). Rarely are they afforded opportunities to “show” themselves or be
noticed. As we saw earlier, both Ben and Mina worked hard to locate communities and
to find ways to participate in the practices of those communities in order to construct
their identities. Stewart's story is similar in many respects. However, as we will see,
Stewart's strategies for constructing identities are not just about fitting in; rather, they
involve the need to be seen, to show oneself to others. Drawing heavily from the
anthropology literature, in Stewart’s story I illustrate how identities are crafted by
creating “significant experiences” and by participating in rituals and performances
within communities.
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"From the Bottom of the Heart"
In June, 2001, in his crowded one-bedroom apartment, Stewart held his third
memorial service in honor of his father. Stewart had been very close to his father and he
was greatly affected when his father died unexpectedly in 1998. He had been planning
this event for a few months and had called me on a number of occasions to make sure
that I would attend. When I arrived, Stewart greeted me warmly with a hug and a kiss, as
he did all of his guests. At 40 years old, he looked suddenly more middle-aged to me
with his thinning hair combed back and a slight "spare tire" becoming evident over the
belt on his dark dress slacks. Stewart had assembled a diverse group of people for this
event: his ailing mother and older brother from out of town, old family friends, a former
co-worker of his father, a rabbi Stewart knew through a Jewish group for adults with
developmental disabilities, one of Stewart's junior high school teachers, a handful of
Stewart's friends (all with developmental disabilities), and Jackie, his girlfriend of many
years (also developmentally disabled).1 The apartment was uncharacteristically neat,
with Stewart's abundant collection of books, records, CDs and videos on the shelves and
newspapers stacked neatly in the comer. Additional folding chairs were scattered around
the room so that everyone could sit in the small living room, lending a feeling of
intimacy to the occasion.
1 Stewart, unlike many people with autism, had sustained, though not without it's ups and
downs, a long-term romantic relationship with Jackie for close to a decade. Stewart and
Jackie decided to remain “boyfriend and girlfriend” rather than get married mainly due to
economic reasons. If they were to marry, Jackie would lose her SSI benefits and Stewart
did not feel that he could support her on his salary. In addition, Stewart valued his time
alone to pursue his interests, which he describes as “higher, more cultured” than Jackie’ s
interests. Neither has the desire to have children. For that reason, as a young man,
Stewart, at the urging of his father, had a vasectomy.
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After we socialized a bit, Stewart began the service by handing out a thick
program entitled "I'll Be Loving You Forever...and Ever...and Ever." He gave a short
talk about how his father's memory had been very much alive for him this past year. He
explained that his mother had moved to an assisted care facility and out of the house in
which he had grown up. He told us how he had sorted through and brought many of his
father's belongings to his apartment, in order "to restore my father's legacy here at my
place." It had been an intense emotional experience for him. Stewart told the group:
It was for me very difficult for me to accept and detach myself from the house
that I myself grew up in .. . . Not only as a place where my brother and I grew up
as children or where mom lived, or even where my father lived. But it was what
he himself had placed and put into the house which was, for me, why it had
become quite emotional, for me.
Stewart then invited his guests to “reminisce” about his father. People
volunteered and shared stories—some highly emotional, some humorous. Stewart's
mother told a story about how she and her husband met on a train in Europe after World
War II, both having escaped from Germany before the war; his brother told a story about
the metaphysical connection he and his father had always shared. Carefully orchestrated
by Stewart, the service progressed with the reading of psalms and poems by Walt
Whitman, the presentation of a plaque honoring his father, the playing of some of his
father's favorite humorous songs, the viewing of slides of his father's work as an
architect, as well as the recitation of the Jewish Yizkor (Memorial) Service in both
Hebrew and English.
After about an hour, Stewart told the group, “What I want to do now is move over
to the song 'Loving You Forever,' which I composed. This is really written from the heart
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and debuted two years ago.” Stewart went over to the piano, took a deep breath, and
began to play. He sang with great emotion and lack of self-consciousness, closing his
eyes and rocking gently to the music. His composition was a narrative—the story of his
relationship with his father:
You were a wonderful father
Who helped me in every way,
Who cared for me
And loved me very deeply.
You went out of your way to help me,
To move into my new home,
And organized the furnishings
To make it livable for me.
As the chorus of the song approached for the second time, Stewart invited
everyone to join in. Soon everyone in the room was singing together:
We'll be loving you forever,
And we miss you very much,
We'll think of you
And picture you in spirit.
And the words, written on the plaque,
Will live in our hearts and souls,
And those memories of you
Shall never die.
After the last chords of the song faded, he stood and his eyes welled up with
tears. Everyone clapped appreciatively and Jackie came over to give him a hug. Stewart
began to cry with deep, emotion-filled sobs. After a couple of minutes, he regained his
composure and said, "Now the song has really become a central part of me. Which is
why it's become quite a very important, very moving moment, for a song like this,
because it came right from the bottom of my heart itself."
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I was particularly moved by Stewart's song and his performance, for it illustrated
the depth of his emotions, something he had never been able to express in our
interviews.2 I was also impressed with his ability to orchestrate this event, his ability to
use cultural resources, his appreciation of the past, and the significance Stewart ascribed
to this ritual. Sharon, his former teacher, mentioned to me that even in junior high,
Stewart loved to participate in ceremonies and school events. As I drove home, I realized
that, though the most obvious purpose was to honor his father, the event was also very
much about Stewart. This dramatic display was, in fact, much like what Myerhoff (1986)
describes as a “definitional ceremony,” a strategy that provides “opportunities for being
seen and in one's own terms, garnering witnesses to one's worth, vitality, and being” (p.
267). The memorial service provided Stewart with an audience as he narrated his life,
crafted and celebrated his multiple identities—as a loving son, a friend, a member of the
Jewish community, and a musician. Though I had observed and heard stories of many of
the other rituals and performances in which Stewart partook, for the first time I realized
the significance of these experiences. In fact, it became evident to me that throughout
much of his life, participating in rituals and performing within a social context were
strategies that Stewart used to construct his identities.
The lack o f and difficulty expressing emotions appropriately to the context is often cited
in the literature on autism and Asperger's syndrome (see for example, Attwood, 1994;
Baltaxe & Simmons, 1992).
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"He Always Loved to Be on Stage"
Ritual and performance have always been part of Stewart's life. Growing up in
what he describes as a very loving, upper-middle class family, Stewart was always
included in family activities, and he particularly remembers enjoying events such as
birthday and holiday celebrations. Stewart loved the ritual nature of such events—the
formality, the preciseness, and predictability (Myerhoff, 1978; 1986). As for many
people with autism, routines and rituals were important to Stewart for they were a way of
creating order, of reducing uncertainty in an often confusing world (Attwood, 1994;
Williams, 1992; 1994). Later, as we will see, rituals came to mean much more.
As a young child, Stewart was afforded many opportunities. He received early
intervention services and his parents participated in counseling and training to help them
learn how to best raise a child with autism. He was exposed to the arts: music, theater,
literature, and films. Stewart showed interest in learning to play his family's piano and
soon he began taking lessons. Though he was never able to learn to read music, given his
gift of perfect pitch, Stewart developed the remarkable ability to play by ear. Soon he
was imitating many different styles of music, from classical to jazz to pop. Not only did
he listen and play music, but he also learned about the lives of musicians and the history
of musical traditions. One of the first books Stewart read was about J.S. Bach and his
children, which he proudly showed me on one of my visits. Soon Stewart had
memorized the birth and death dates of a great many composers. As he grew to be a
teenager, Stewart began to compose his own music, including songs, which were an
important outlet for expression. These songs were often about significant events, events
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he wanted to make sense of. One of Stewart's earliest songs was about his first “crush”
on a girl and his resulting confused feelings. Though he often had difficulty expressing
himself verbally, Stewart was able to begin to narrate his life through music.
Throughout most of his school days, Stewart attended special education
programs at private schools. Although as a child Stewart had little interest in other
children and was content to entertain himself, as he got older, he grew to enjoy social
activities, especially being part of a group. He was particularly fond of activities that
involved performing. Stewart performed in plays and concerts throughout junior high
and high school. He always loved to be on stage," his mother told me, "to be the center
of attention."
Bauman (1986) describes performance as a display of expressive competence or
virtuosity addressed to an audience. It is an experience marked off from the ordinary, the
humdrum of daily life (Schieffelin, 1996; 1998). According to Peacock (1990), “a
performance is, among other things, a deliberate effort to represent, to say something
about something” (p. 208). To perform, Turner (1982) suggests, is to “bring something
about,” (p. 79) to make something happen. Performing is an opportunity to be seen, a
chance to reveal something about oneself to others (Schieffelin). As Small (1998) notes,
“those taking part in a musical performance are in effect saying—to themselves, to one
another, and to anyone who may be watching or listening—This is who we are” (p. 134).
3 An interest in memorizing lists of facts is often reported in the autism literature (see for
example, Attwood, 1998; Tantum, 1991; 2000). As an adult, Stewart found great personal
satisfaction in memorizing facts, but he also used his knowledge to connect with others.
When I met Stewart, he asked me when my birthday was and then exclaimed, “Why,
that’s Irving Berlin’s birthday!”
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Stewart's high school performances were, in many ways, a means of constructing
identities. Through performing in these concerts and plays, Stewart became part of a
group, the community of his school. For the first time in his life, Stewart felt that he
belonged. As Stewart later told me, “I was hooked on that school.” But performing was
also about being seen, having his feelings, his emotions—in essence, himself—
acknowledged by others. It was in the highly social practice of performance within a
community that Stewart began to fashion his identities.
"Feeling Invisible"
The transition from high school to junior college was a difficult one for Stewart.
Not only was he challenged academically in ways that he had never been before, but he
felt tremendously isolated, or as he told me, “I was sort of feeling invisible.” The
community that had become so instrumental in his life was no longer available to him.
Stewart began to feel depressed, lonely and desperate for a way to socialize with others.
Unable to connect with the other students at the community college—’’ people had their
own ways and their own lives”— Stewart attempted to maintain contact with his high
school community. One strategy was to organize reunions. Stewart told me:
I got the idea from old-timers' baseball games. You know, getting people together
to celebrate the past. So I called everyone, uh, teachers and students alike. I guess
I'm what you call a reunionist. The past is important to me. There's a piece of
everyone in me.
However, his desire to maintain connection with the past, to hold on to his
identity constructed in his high school community, was problematic. Stewart wanted to
participate in performances and other events at his high school. One day when he arrived
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at the school, hoping to take part in a rehearsal, Stewart was told that there was a rule
that prohibited graduates from participating. He became upset and returned to his
parents' house in a very agitated state. When he saw his parents, he could not contain his
emotions.4
I was so upset about that rule. It lead to the incident with my parents.. . . I
grabbed a letter opener. Nobody was hurt because it was grabbed out of my hand.
Although there were a lot of tears and all of that. It was hard for me to say
goodbye.. . . I really missed it [high school] a lot. I wanted to perform with the
music class. That was my mistake but I couldn't live in the past. This was a hard
time for me.
Creating An Experience
Recognizing Stewart's need to interact with others and to be a part of a
community, his parents suggested he join "Gaining Independence," a group for adults
with developmental disabilities. Here Stewart found a community where he felt
comfortable. In fact, many of the people Stewart met through this group became lifelong
friends. The group taught independent living skills and provided many social
experiences and importantly, opportunities for Stewart to perform. Enthusiastically,
Stewart participated in plays, concerts, and talent shows put on by members of the group.
With venues for presenting himself, ways to be noticed, he found new opportunities to
author himself (Myerhoff, 1986), and to expand his social world. After completing his
associate's degree in music, Stewart began attending classes at another community
college that provided specialized services to students with disabilities. There, he learned
4 Behavioral outbursts, including aggression against others and destruction of property, is
reported to occur fairly frequently in children with high functioning autism, especially in
response to changes in routines. Behavioral outbursts are reported less frequently in
adults, and generally occur in highly frustrating situations (Rumsey et. al., 1985).
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about another social group, a group for Jewish adults with developmental disabilities
called "Shalom," which was to become another significant community in Stewart's life.
As Stewart developed his social network, he worked in a variety of part time jobs
including library clerk and a courier. By the time he was in his late 20s, Stewart began
working full time as a file clerk in an office, a job he still holds.5 He liked the routine,
predictable nature of his job and appreciated the income and benefits. However, he did
not find the job stimulating intellectually. Stewart felt somewhat isolated, tucked away in
the comer of the large warehouse-like office, with minimal contact with co-workers. In
spite of his attempts to develop friendships, Stewart realized he had little in common
with his co-workers. For Stewart, everyday life was rather humdrum, with few
challenges or opportunities for self-expression. As Stewart lamented, "At work, I'm not
really out there for people to see." While many young adults find in work a context for
constmcting identities (Kroger, 2000), this was not Stewart's experience. Work was
another place where he was largely invisible. His "identity work" therefore, was
relegated to his leisure time with his social groups.
These social groups to which Stewart belonged were particularly important
because they offered a variety of experiences that enhanced a feeling of community and
thus were central to the process of constructing identities. These experiences, which
Stewart longed for, were separate from everyday life, experiences demarcated from the
5 Holding a job is often very difficult for individuals with high functioning autism. In spite
of relatively high levels of education, individuals with high functioning autism, like other
people with disabilities, have a low rate of employment (less than 50%) (Craig, 1998;
Rumsey, et. al., (1985); Venter, Lord & Schopler, 1991). When employed, most
individuals with high functioning autism hold jobs that are fairly routine in nature and
have minimal social requirements.
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general stream of experience (Turner, 1986), what Dewey (1934) calls an experience. An
experience, it seems, has a narrative structure; it has its own plot and a beginning, middle
and end (Abrahams, 1986; Mattingly, 1998). It can be of such importance that it is
formative or transformative (Turner, 1986). As Mattingly (1998) suggests, an experience
"is not merely passively received but actively created" (p. 82).
Stewart was not content to merely participate in the events of these communities.
Rather, he was often instrumental in orchestrating experiences to build a sense of
community. In many ways, Stewart became a leader of the group as he helped to
organize events, such as outings to museums, holiday parties, retreats, and talent shows.
Stewart was especially anxious to have me attend his talent show. He called me often to
remind me of the date and updated me about how the rehearsals were going. In order to
get other group members to participate, Stewart shuttled his friends to and from
rehearsals.6
The talent show took place at a Jewish Community Center in a banquet room
with a stage. As I glanced at the program, I noticed that Stewart was involved in quite a
few numbers, performing with others as well as alone. In the following excerpt, I
describe one number:
With his partner, Marla, Stewart danced a jazzy number. Dressed in a dark suit
and top hat, he danced enthusiastically. Stewart moved remarkably well, showing
a good sense of rhythm. His facial expression was serious, though occasionally I
noticed a slight smile. At one point Stewart did a sort of a “break dance,” getting
down on the floor and kicking his legs. As he did this his friends in the audience
clapped and cheered. When the number ended, Stewart and his partner bowed
appreciatively. I noticed Stewart was drenched in sweat! . . . At the intermission,
6 He did this, however, not without some resentment. Always concerned about his finances,
Stewart felt that his friends should contribute to the cost o f gas.
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still flushed with excitement, Stewart hugged his friends. They talked about the
various performances and everyone seemed to be enjoying themselves
thoroughly. It was obvious that this was a very meaningful experience for
Stewart and the other numbers of this group.
Making Sense of and Communicating Experience
Though experiences are often inchoate, ungraspable, or difficult to understand
(Bruner, 1986; Dewey, 1934; Mattingly, 1998), humans, it seems, have a drive to make
experiences meaningful, to relate past and present experiences. Turner (1986),
paraphrasing Dilthey suggests, “experience urges toward expression” (p. 37). Dewey
sees an intrinsic connection between experience and aesthetic expression. He describes
this as an “impulsion,” a movement of ideas outward. Because humans are social beings,
they want to communicate their experiences to others. This communication of
experience involves symbolically transforming experience from one mode of experience
to another (Langer, 1957). Often this is through formal modes of expression, such as the
arts—writing, painting, acting, dancing, or as in Stewart's case, through composing and
performing songs.
For Stewart, events such as a retreat to the mountains with "Shalom" became an
experience, something worth memorializing, something to tell a story about (Mattingly,
1998). Stewart's songs are almost always narratives, a telling of actions and feelings
(Bruner, 1986; Mattingly). Songs gave Stewart a way to make experience coherent and
meaningful. In the song "Blume from the Heart," excerpted below, we get a glimpse of
the significance of a retreat he attended:
Somewhere in there
Away from the hustle of the city,
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There's a place
Where there's serenity
And your worries escape you from this world.
We celebrate the Sabbath
With prayer and with games,
With singing, dancing, food and drink,
In nature's wonderland.
Somewhere in there,
There's warmth and joy
Among the many friends.
Sharing and caring
And getting closer together,
It's Blume from the heart.
This song, like many of his others, is not only written; it is performed. At the
yearly retreats, Stewart performs this song. Through performing this song and others, he
is telling others, affirming, and celebrating that he is a part of a community, a friend, a
Jew, and a caring individual.
Becoming a Man: The Bar Mitzvah and other Religious Rituals
While Stewart's initial interest in "Shalom" was primarily for social interaction,
he soon found himself attracted to both the cultural and religious aspects of Judaism.
This interest was initially a bit puzzling to his parents, who were non-religious, though
Jewish by heritage. While aspects of spirituality appealed to Stewart, it was the rituals,
the rites, and celebrations that were of particular interest.
Ritual, Myerhoff (1977) writes, "is an act or actions intentionally conducted by a
group of people employing one or more symbols in a repetitive, formal, precise, highly
stylized fashion" (p. 199). Ritual, like performance, is an experience deliberately marked
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off from ordinary experience (Mattingly, 1998; Myerhoff, 1977, 1986; Ortner, 1978).
Many anthropologists (see for example, Baumann, 1992; Moore & Myerhoff, 1977;
Turner, 1982) consider ritual to be a symbolic performance. It is not merely the carrying
out of rules or customs, for in ritual, something happens (Turner, 1982).
In many ways, ritual has much to do with identity. Small (1998) contends that
rituals are "an act of affirmation of community," (p. 95). They are "an act of celebration
(to rejoice in the knowledge of an identity not only possessed but also shared with
others)" (Small, p. 95). In their dramatization, rituals often come to symbolize the very
nature of a community (Myerhoff, 1977, 1978; Small, 1998). They become a way for the
community to indicate, to themselves and others, who they are. As Myerhoff (1986)
notes, "In ritual, doing is believing and we become what we display" (p. 268). Rituals, in
their precision, predictability, and formality provide a sense of social cohesion and
continuity, a sense of connecting the community's past with the future (Myerhoff, 1977;
1978). Importantly, "we engage in rituals in order to transmit collective messages to
ourselves" (Leach quoted in Baumann, 1992, p. 98).
The narrative quality of ritual also links it to identity. Rituals can be viewed as
the enactment of a community's values and beliefs, or a "grand narrative" (Mattingly,
1998). However, as Mattingly suggests, rituals do more. She writes, "ritual performances
may create events worth telling stories about" (p. 162). As discussed in Chapter 2, it is in
the telling of stories that identities are fashioned.
Certainly one of the most distinctive features of Judaism is the great variety of
rituals "that cover every aspect of life from the cradle to the grave" (Kertzer, 1960, p.
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79). Rituals play a major role in maintaining Jewish identity. These Jewish rituals, with
their roots in ancient stories, are highly symbolic enactments. The performative aspect of
Judaism, rituals such as the Passover Sedar and the lighting of the Hannukah candles,
had great appeal to Stewart. As he began reading about Judaism and learning about the
symbolic significance of the rituals in which he participated, Stewart said he began "to
feel like a Jew."
An important ritual, particularly in American Judaism, is the Bar Mitzvah, a rite
of passage in which a boy, usually at age 13, assumes a man's role and becomes
responsible for fulfilling the commandments (Kertzer, 1960). Within a year of joining
"Shalom," at age 24, Stewart decided to study for his Bar Mitzvah. During one of our
first interviews, Stewart told me, "I decided to do this because I wanted to really be a
Jew. To become a man under Jewish law." Stewart's Bar Mitzvah, which took place well
over a decade before, was still very meaningful. He excitedly showed me a videotape of
the ceremony, something he told me he watches from time to time. In the video, a much
younger looking Stewart participates in the rituals of the Bar Mitzvah. He recites the
prayers, sings the songs, carries the Torah, and gives a short speech. As we watched,
Stewart said, "It was probably my proudest moment." Showing me the video tape,
Stewart was retelling the "story" of this event and this retelling allowed him to continue
to craft his identity not only as not only as a Jew, but as a man.
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The Super Bowl Party: Crafting Collective Experience
Stewart was not only drawn to participate in the events of the community of
adults with developmental disabilities and the religious rituals of Judaism, he was also
attracted to events in the broader community, the collective culture. An avid follower of
cultural happenings, Stewart sought out ways to participate in these events. When
finances permitted, he enjoyed going to plays, concerts, and museum exhibits. Other
events, such the Rose Bowl parade, the Oscars, and the Super Bowl became important
occasions for him. Determined not to miss out in participating in what he considered
important cultural rituals, Stewart hosted gatherings at his apartment so that he could
experience and celebrate these events.
Stewart invited me to several of his parties. My first experience was his Super
Bowl party—his 11th annual. In my fieldnote, I described the scene:
When I arrived, about 10 minutes into the game, approximately 18 people,
including friends from Stewart's social groups and his high school, were crowded
into the living room. It was rather noisy with the TV blaring and people talking
loudly, cheering. Jackie (Stewart's girlfriend) was circulating around the room,
filling people's cups with soda and replenishing the snacks on the tables. Stewart
greeted me, helped me find a place to sit, and quickly introduced me to some of
his friends. Everyone was very friendly and cordial. He seemed very excited and
was obviously enjoying performing in his role of host. Stewart sat down near the
TV and joined in an animated conversation with others who seemed to be quite
knowledgeable about the game. The group provided a running commentary after
each play, sometimes cheering loudly or booing a referee for a bad call. Stewart
was the only person routing for the Falcons, the underdogs, and as his team fell
farther behind, Mike, a rather large man with a booming voice (and the only
other person there who seemed to have autism) said teasingly, “Ha! Stewart, your
team doesn't have a chance! They're bums!” To this Stewart good-naturedly
replied, “Just wait! It's only the first quarter. I'll never give up on my team!”
Later, when Stewart's team seemed to be closing in to score, Tom, one of
Stewart’s long time friends, said, “I'm changing sides!” To this Mike replied,
“You're a traitor! Is your name Benedict Arnold?” Everyone laughed and the
ribbing continued. Some guests, mainly the women it seemed, were less
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interested in the game. Two of the women sitting near me were talking about a
recent birthday party they had attended, while I overheard Jackie and others
discussing their dieting attempts.. . . As always, I was surprised by how social
everyone was and how “typical” the party seemed.
At half time, Stewart came over to chat with me about the game, for he and I
were routing for the same team. I asked him if he was having a good time. His affect
changed suddenly and he replied somewhat dejectedly, “I am, but I'm disappointed that
people from work didn’ t come. They must have been busy, had their own parties to go
to.” Being “disappointed,” a term Stewart used with some frequency meant that the
event had not gone quite as he had planned. In spite of this disappointment, Stewart was
generally pleased with the party. His friends enjoyed themselves, and Stewart had once
again created an experience, a performance of sort where he could be seen. But perhaps
most important was the symbolic meaning of the Super Bowl party—connecting Stewart
to the broader community. He had shared an experience not only with his friends, but
also with millions of other Americans. This experience was, in many ways, part of
Stewart's attempt to craft an identity as part of the collective culture.
"There's More to Me": A Turning Point
As the previous stories have shown, events, particularly unforeseen events, can
lead to a disruption, and often become a turning point in the process of identity
construction. Such a turning point came in Stewart's life when his father died. He told
me, “My father's death made me look at my life and what I wanted to do with it. . . . I
wanted to fulfill my father's wishes, which were for me to succeed and maybe learn new
things, to do good things in the world.” This prompted me to ask him if he had thought
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about his purpose in life. After pausing to consider his answer, Stewart said, “It's to carry
on, or maybe even develop, I guess, things to try to improve the world.” In order to do
this Stewart realized that he had to “leave some of the past behind,” to “go out of my
world.” He added, “I had the urge to move on. I wanted to break out of routines. There's
more to me.”
His father's death brought Stewart to the realization that constructing his
identities was not just about remembering the past and creating experiences. It was also
about crafting a future. According to Erikson (1963), it is often in mid-life, with changes
in family cycles, that people become concerned with expressions of generativity, leaving
a legacy for future generations. As we will see, Stewart expressed this by dedicating
himself to causes that contribute to the ongoing good of society.
"Doing Something for the Bigger World"
Stewart realized that this commitment to “reaching out to more people” and
“doing something for the bigger world” would require that he craft a new identity. He
would have to restructure his daily activities and locate new communities in which to
have experiences. Stewart began to limit his involvement in his social groups, groups
where he felt safe, in order to dedicate time to searching for a new community—people
involved in the disability self-advocacy movement. Stewart had learned about self-
advocacy through a friend and found the mission of the movement compelling. Stewart
began attending “Autistic Adults Coming Together” (AACT), a group he hoped would
connect him to the self-advocacy movement. His participation in this group turned out to
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be short lived because he found the group to be “more of a social or support type of
thing, and I wasn’ t looking for social.”7 Undeterred, Stewart continued to search for
other organizations, both statewide and local, that focused specifically on self-advocacy.
He began attending self-advocacy training sessions, including weekend-long courses.
With great enthusiasm, Stewart described his first experience to me:
I learned about mediation. Well, of course, that is cheaper and would save a lot of
court costs on disputes. Also, about the ADA and other laws that protect people
with disabilities, some of which are state laws that go further than the ADA, and
some of these other bills, such as the Architectural Barriers Act. And the
Rehabilitation Bill. Also about networking, how to get together to form networks
of people interested in advocacy. I was very lucky to take the training!
Stewart's involvement in a statewide self-advocacy organization grew, and soon
he volunteered to be a reporter for their newsletter. This enabled him meet others who
shared his passion and to learn more about current issues affecting the movement. All of
these efforts helped Stewart locate himself as part of a new community and to craft his
identity as a self-advocate. To do this, Stewart utilized strategies with which he was
familiar, namely creating and marking experiences, performing, and participating in
rituals.
An important occupation in the self-advocacy community is public speaking and
as someone who loved to perform, this had great appeal to Stewart. To improve his
speaking skills, Stewart enrolled in a class at a local community college. There he
7 Interestingly, in addition to not having his interest in self-advocacy met, Stewart also
expressed difficulty communicating with others with autism and Asperger's syndrome at
AACT: “The harsh or shrill tone of speech.. . . I mean that was something that made it
also sometimes harder for me to relate.” Stewart felt more of a sense o f kinship with the
community of adults with developmental disabilities than he did with the autism
community.
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developed a speech entitled "From Autism to Advocacy," a personal narrative. He gave
this speech as a presentation in many places, modifying it to his varied audiences,
including special education classes, self-advocacy conferences, and support groups.
One evening, I heard Stewart give this speech to a support group for parents who
have children with Asperger's syndrome. In a small room, over-flowing with parents,
Stewart told the story of his transformation from a child with autism to an adult with
multiple identities, perhaps most importantly, a self-advocate. Though he was somewhat
nervous at first, it was evident that he was becoming increasingly comfortable in the role
of public speaker. More of a performance than a speech, Stewart narrated his life by
telling stories and singing his songs that expressed emotions that spoken words alone
could not express. Using his electronic keyboard to accompany his singing, Stewart gave
an impassioned, sometimes humorous account of his life, providing parents with
suggestions on how to help their children become more independent, to become their
own self-advocates. It was evident to me that the audience found the performance
compelling. When Stewart sang the song “Loving You Forever,” many people searched
for tissues to wipe the tears from their eyes. The audience had become a part of Stewart's
performance, as listeners and witnesses. They stayed well past the allotted time, asking
Stewart question after question. It was evident that Stewart had established what
Scheiffelin (1996) calls “interactional credibility,” which he claims is fundamental to
performance “because it ratifies the bond between performer and other participants
which is crucial if the performance is to be brought off’ (p. 62).
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After the meeting ended, I waited for Stewart. When he said his final good-byes,
he turned to me and gave me a big hug and I congratulated him on a fine presentation.
Still somewhat flushed from the excitement of a successful performance, Stewart said,
“Well, I like to kind of share and really go out much more in the community.. .. to really
get myself known and to broaden others' horizons, to make them much more—more
o
open to these things. To see people with disabilities as “people first.” I was struck by
how the meaning of Stewart's performances had changed as he crafted this new identity
as a self-advocate. These performances now were not only about locating communities
and narrating his life, but they were also about “doing something for the bigger world.”
Stewart's involvement in the self-advocacy movement has become a focal part of
his life, an important venue for crafting an identity. He regularly attends a state-wide
conference on the subject, which connects him to a community of like-minded people.
After attending an annual conference with over a thousand participants, Stewart
commented, “It was just so wonderful to be surrounded by people, people with
disabilities who are out there doing something.” Stewart enjoys the “event-ness” of the
conferences and the associated rituals—the speakers, the social events, and meetings. To
celebrate the experience of attending his first conference—to make it an experience,
Stewart composed a song, “Self-Advocacy,” and at a conference the following year, he
performed the song in front of a group of about 50 people. Pleased with his performance,
Stewart later told me:
8 Stewart used this well-known expression o f the disability rights movement— ’’people
first”— often in his self-advocacy work. He was the only participant in the study who
preferred to say that he “has autism” rather than referring to himself as “autistic.”
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The song was sort of based upon—do you know that Laura Nero song, made
famous by the “Fifth Dimension” called “Save the Country?” It has the verses
that begin with the words, “Come on people. Come on people.” Uh, that gave the
idea to kind of write an uplifting kind of song. It has many verses and it is sort of
in that kind of up pop-rock beat, sort of soul-type beat of the 6 0 s .... And there
was a good response, a standing ovation, uh, for it. Even, it was videotaped too. I
did say afterwards that the purpose of the song, “Self Advocacy,” was to
paraphrase Dr. Martin Luther King, his “I Have a Dream” speech by saying that I
do have a dream that one day, that people like you and me will be judged not by
their disabilities but by the content of their own characters.”
Sitting in his living room, Stewart offered to play the song for me. As he played,
I was struck by how Stewart's songs reflect his expanding world, his changing identities,
and his rich, though sometimes hidden, emotional life. With great earnestness, Stewart
sang:
Come on people with self-determination,
Take control of your own lives.
Set up your goals
And your own intentions,
Personal empowerment
Will be your guide.
Come on people,
Who have a purpose
Come on out
From under your shells,
To live and work,
And make new friends,
And go out into the world
With a new chance on life.
Self-advocacy,
All over this nation,
Self-advocacy,
Lay it on the line with
Self-advocacy, self-advocacy, self-advocacy
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September llth , 2002
On September 12, 2002, as I was beginning to write this chapter, Stewart called
me, as he often does from time to time, to "update" me about significant experiences in
his life. As always, he had an agenda for the call, specific stories that he wanted to tell
me. On this evening, Stewart recounted how he had spent September 11th, the first
anniversary of the tragic event:
In the morning, early, I went downtown and participated in the morning vigil. It
was quite nice though there were some protesters for Bush, which was distracting
and not really appropriate for the day. In the evening I went to the
interdenominational service to honor the victims of 9-11. It was quite beautiful
with the candles and all of the people coming together. People of all religions. It
was very moving.
When I asked him why he went, in a most solemn voice Stewart said:
Well, it's important to remember people. Like Pearl Harbor or like my father.
Even though I didn't know anyone there, I was with other people like me. Other
Americans. It's important to feel part of things... . I'll probably do this every
year.
Once again, Stewart was hard at work crafting his identities by seeking out
rituals, significant experiences to connect him to communities. No longer content with
constructing his identities within the secure community of adults with developmental
disabilities, Stewart had ventured out of “his world” and into the “bigger world,”
participating in cultural events alongside others “like him”— other Americans.
Conclusion
Stewart's story illustrates the importance of community in crafting identities.
Like Ben and Mina, Stewart worked hard to locate communities in which he could be
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accepted as well as “seen.” Drawing on his personal skills, within these communities,
Stewart participated in and created experiences through performance and ritual. To make
sense of and express the meaning of these experiences and to communicate his deeply
felt emotions, Stewart composed songs—narratives that also contributed to the
construction of his identities. As he got older and unexpected events occurred, Stewart's
imagined future changed. To craft this new identity, Stewart shifted his community
involvement. Moving from a safe, somewhat contained community of adults with
developmental disabilities where Stewart was, in many ways, a “star,” he ventured out
and was working hard to construct identities in the larger, collective community.
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CHAPTER 8
HAROLD’S STORY
Introduction
In the previous chapters we have seen the importance of locating and becoming
part of a community and the power of social discourse in the construction of identities.
We have also seen how identities change as life unfolds and personal narratives are
revised. In this chapter, these themes recur. However, Harold's story highlights how
occupation, engaging in highly symbolic and meaningful activities within particular
social worlds, becomes a key to crafting identities. Drawing mainly from the
occupational science and occupational therapy literature, this story illustrates how
engagement in occupation is essential in the process of constructing an identity as a
competent individual.
It's Not Just a Game
On a warm July afternoon, about a month after the study began, I met Harold at a
high-school tennis court. He was neatly dressed in dark blue tennis shorts and a white
tee-shirt, inscribed with “Walk for Autism” on the back, a shirt I recognized from an
Autism Foundation (AF) fund-raising event in which Harold and I had both participated
earlier that summer. A neon green cap and sturdy tennis shoes completed his outfit. I
noticed how tanned Harold was, perhaps an indicator of the hours spent on the tennis
court. He carried a large, red Wilson tennis bag, filled with all sorts of paraphernalia—
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water bottles, balls, towels, various sprays, two rackets, and a knee brace, which Harold
put on before playing as a “preventive measure.”
I already suspected that tennis was an important part of Harold's life. In each of
our prior conversations, Harold had mentioned tennis and how he had been playing the
game for over 25 years. The signed photos of famous tennis players on the walls of his
apartment, which he had proudly pointed out to me, and the tennis magazines and other
equipment strewn around his apartment had given me clues. Being an avid and fairly
good tennis player myself, I was rather curious to find out more about Harold's
involvement in tennis and to play with him for he did not strike me as a particularly
athletic fellow.1 At 6'2", Harold was rail thin and gangly, his movements somewhat
awkward. His physique, along with his thick-lens glasses, made it hard for me to
imagine Harold on the tennis court.
Our game was part of my effort to get to know Harold better, and it, in fact,
revealed a great deal about who he was. Once out on the court, we warmed up, hitting
the ball gently back and forth. As I had suspected, Harold did look a bit uncoordinated,
his timing a shade off at times. However, he made contact fairly consistently and I
noticed that his strokes looked "classic" in many ways, suggesting many years of
instruction.
It was soon evident to me that tennis was serious business for Harold as he was
often very critical of himself—and of me. As we played, Harold often chided himself
1 Motor clumsiness is often reported as a characteristic of Asperger's syndrome (Frith,
1991; Gillberg, 1991; Tantum, 1991, 2000). Tantum (1991) specifically mentions “a lack
o f aptitude for ball games” (p. 162).
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saying, “Bend those knees” or “Watch the ball.” Occasionally, Harold made comments
or gestured 'thumbs down' when I miss-hit the ball. As we began to practice serves,
Harold's demeanor became even more somber. Before each serve, he muttered reminders
to himself. Though awkward looking, his serve came over with surprising force and
accuracy. When he missed, Harold shook his head and berated himself. Laughing I said,
“Well, even Pete Sampras double faults sometimes!” But for Harold, who generally
displayed a good sense of humor, this was not something to joke about. As he
approached the service line again, he said in a loud voice, indicating his frustration, “You
shouldn't double fault, especially not into the net.”
After nearly 90 minutes, we ended playing. As we packed up our equipment, I
complimented Harold on his game. For the first time that afternoon he smiled, thanked
me graciously, and explained that his tennis skills had improved a lot recently. He said,
"People with Asperger's are uncoordinated. So I've had to work hard. I didn't have any
encouragement to play sports as a child. I've had to do this myself. Of course I've had
help from coaches."
As I drove home, I was struck by how tennis meant something different to each
of us. For me, at this time in my life, tennis was respite from the rigors of work and from
the painstaking work of transcribing my interviews. I was happy to be getting some
exercise, to have a chance to "play." For Harold tennis clearly was not "just a game." It
was not until much later as I began to piece his life story together that I understood the
significance of the occupation of tennis for Harold. I began to see that tennis was not just
about "doing," but about "being" and "becoming" a particular type of person
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(Christiansen, 1999; Fidler & Fidler, 1978; Kielhofner, 2002; Wilcock, 1998), part of his
quest to feel like and be seen as a competent person.
Is There Something Wrong with Me?
Harold was bom in 1942, one year before the diagnosis of autism was introduced
(Kanner, 1943). According to his reports, as a young child he displayed many classic
symptoms of autism—repetitive behaviors, excessive temper tantrums, sensory
sensitivities, and a delay in language development. However, like many other people of
his generation with more mild symptoms of autism, Harold was not diagnosed with
autism until he was well into adulthood.
Without the benefits of today's knowledge of autism, Harold's parents had
difficulty understanding and dealing with their middle child's unusual behaviors. His
father, who Harold suspected may have had some autistic characteristics, "never
acknowledged there was anything wrong with me at all," while his mother "knew
something was wrong with me but she couldn't figure what it was." Determined to find
out what was "wrong" with her son, she took him to many doctors. Harold explained
what happened:
My mother took me to Children's Hospital in [a large north eastern city] when I
was three. And somebody, some therapist—some so-called therapist—suggested
I should be put in an institution for the rest of my life. Be put in a cage or
something like that. And fortunately my mother did not follow that suggestion.
So, I'm not in an institution right now. In those days everyone was put in an
institution about anything.
When Harold was five, his parents sent him to a residential school for "brain
damaged children," which he describes as "maybe the best thing that ever happened to
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me in my life. It was at this school that they got me to talk." He stayed there for two
years and then returned to live with his family, who, because his father was in the
Foreign Service, traveled a lot. Harold was educated in private, regular education
schools, including prep schools and boarding schools. While he generally did well
academically, navigating the social world was much more challenging. Like the other
participants, Harold remembered being isolated and teased. He lamented, "I guess I was
odd and very naive. I was the butt of many jokes."
Throughout his childhood and teenage years, Harold's mother continued to seek
help, looking for professionals to explain his behavior, and perhaps, to offer a way to
"fix" him.2 Harold came to resent not only his mother's emphasis on what he could not
do, but also the professionals who attempted to "help." Over time, the focus on Harold's
deficits and the message that there was something "wrong" became so prevalent that
Harold began to doubt his abilities:
My mother kept seeing something was wrong with me. She kept sending me to
psychiatrists, psychologists. For much of my life I've been doing that. Now the
most of them didn't do me hardly any good at all. Certainly some might have
done some harm At first I didn't know there was anything different about me,
but because everyone was telling there was, I started to feel like there was
something wrong with me, like if I just tried harder, things would be better.
Questions of (In)Competence
Following high school, Harold went to college near his family and earned a
bachelor's degree in American History. Desperate to be away from his parents,
2 Whether or not he was ever diagnosed with anything other than "brain damaged" is
unclear to Harold. He has a suspicion that he may have been given a diagnosis of autism
at some point. However, Harold was never told of any diagnosis.
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particularly his mother, who continued to try to “run my life,” and “saw me as disabled,”
Harold chose to attend graduate school far from the southeast where his parents now
lived and where he had gone to college. Though he found the coursework challenging,
he eventually earned two master's degrees—one in history and one in library science.
Harold then decided to enter a Ph.D. program in library science.3 He reflected on this
experience:
I was supposed to write a dissertation. Anyway, they said I wasn't creative
enough, I think. So I'm ABD [all but dissertation]. And I just don't think I was
really fit for the job. And I don't think I wanted it anyway. I could not come up
with an original subject.
With hopes of a Ph.D. dashed, Harold decided to move further from his family,
against his mother's protestations, this time to California. Finding a job proved to be
difficult so Harold once again returned to school, earning a master's in Business
Administration. However, Harold soon found out that more college degrees did not help
him secure employment:4
I don't know why I couldn't get a job. . . . I never knew what was wrong with me
and I had a very frustrating life because I kept—I couldn't get jobs. So it was
pretty horrible.. . . I tried to do everything, even those ridiculous types of jobs. I
tried selling encyclopedias, mutual funds and life insurance, reference work in
the library, teaching, and other odd jobs. I guess I didn't fit in anywhere.
3 The number of college degrees Harold earned is a bit unusual for individuals with high
functioning autism. As might be expected, level o f education appears to be related to
socioeconomic status. For example, in a study involving individuals from middle and
upper middle class families, Craig (1998) reported that 14% had completed community
college, nearly 22% had a bachelor's degree, and nearly 10% had a master's degree. In
contrast, Venter et al. (1991) report that only 1 of 22 people in their study had completed
college.
4 Harold's difficulty securing employment is not particularly unusual for individuals with
autism. Their low rate of employment, in spite o f relatively high levels of education, is
generally attributed to difficulty with the social aspects of work (Craig, 1998; Rumsey et
al., 1985; Szatmari et al., 1989).
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When I questioned Harold about why he thought he had so much difficulty
finding a job, he sort of chuckled and said, "Well, it's kind of hard to get a job when you
don't even look at the person you are talking to, isn't it? I didn't know that then."
Having been raised in a family with strong values, "beliefs and commitments that
signify what is good, right, and important to do" (Kielhofner, 2002, p. 50), Harold had
internalized messages of being goal-directed, successful, and a contributing member of
society. He was determined to find employment and make a life for himself. Upon the
recommendation of a psychologist he was seeing (at the insistence of his mother),
Harold worked to improve his interpersonal skills and self-confidence by taking a Dale
Carnegie course, a marketing course emphasizing being a "team player," and attending
Toastmasters. He even returned to school and earned a bachelor's degree in math, a
subject that had always been challenging for him.
In spite of all of his efforts, Harold continued to "drift" and his inability to secure
steady employment and support himself became a great source of frustration and
continued family conflict. Now that he was in his mid-thirties, his mother was more
convinced that Harold's disability would prevent him from living successfully on his
own, and she put pressure on him to return "home" by limiting her financial support.
I don't know what my mother wanted me to do. I don't even think she cared if I
worked at McDonald's! She just wanted me to come home and be her disabled
son. That's how she thought of m e.. . . My mother always insisted I not try
anything. She discouraged me from doing a lot of things. I might fail! You can't
have that! . . . I think she just saw me as incompetent. And I didn't have much
self-confidence in those days.
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Identity, Competence, and Occupation
Identities, as I have discussed, are, in part, socially constructed through
discourse, the voices of others (Bahktin, 1981; Holland et al., 1998). For Harold, his
identity was shaped, in large part, by the messages of his mother—messages that he was
not only disabled, but incompetent, unacceptable as he was. Jenkins (1998) defines
competence as “the capacity or potential for adequate functioning-in-context as a
socialized human” (p. 1). According to White (1971) to be competent means to be
sufficient or adequate to meet the demands of a situation or task. Kielhofner & Miyake
(1983) note that competence involves four elements: “a) the abilities (and by implication
the limitations of abilities) of the individual; b) individual self-assessment; c) the
objective or collective expectations of others for task performance in the person's
environment; and d) the range of opportunities and resources available to the individual
in the environment” (p. 261-262). Like identity then, competence is socially constructed
and defined (Christiansen, 1999; Goode, 1983; Jenkins; Kielhofner & Miyake), and
intimately associated with “doing” or the performance of occupation (Christiansen;
Fidler & Fidler, 1978; Kielhofner, 1983; 2002; Mocellin, 1988; White). Local cultures,
somewhat arbitrarily, develop classificatory hierarchies of occupations, determining
which are important and which are not (Jenkins) as well as how an occupation should be
performed. Competence it follows, is socially determined based on the appraisal, one's
own and others', of the performance of socially relevant occupations. As Christiansen
writes, “If our identities are crafted by what we do and how we do it, then it follows that
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any threat to our ability to engage in occupations and present ourselves as competent
people becomes a threat to our identity” (p. 553).
This view of identity and competence has significant implications for people
viewed as “disabled.” In fact, disability is often equated with incompetence. As Ingstad
and White (1995) note, “a preliminary common-sense definition of disability might be
that it is a lack or limitation of competence” (p. 1). The occupations often associated
with competence in Western culture, for example, work and independently caring for
oneself, immediately relegate many people with disabilities to the status of incompetent.
However, competence is not just about having the skills to carry out an occupation. It is
highly performative, involving the careful presentation of oneself (Goffman, 1959).
Christiansen (1999) notes, “to the extent that disabilities interfere with the competent
execution of tasks and roles, they threaten the establishment of an identity based on
competence” (p. 554). Whereas one's competence in everyday occupations is usually
assumed, individuals with disabilities must strive to be seen as competent (Jenkins,
1998) and consequently they develop a variety of strategies so that others view them as
competent (Angrosino, 1998; Edgerton, 1967; Goffman, 1959, 1963). An identity of
incompetence can, for some, be so devastating that Jenkins poses the question, “Does
being categorized as incompetent prevent or disrupt the achievement of full person—or
selfhood in the local context?” (p. 7).
Returning now to Harold's story, we have seen how Harold resisted the
categorization of disabled—and it is no wonder why. We will now see how he utilized
participation in occupation to resist the associated identity of incompetence.
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Crafting an Identity of Competence through Occupation
Though the message of incompetence was hard to ignore and had, in fact,
become part of Harold's perception of himself, or as Bahkin (1981) calls it, his "inner
speech," Harold managed to maintained a belief in his personal capacity and used
various strategies to craft an identity as a competent individual. People construct
identities, Gullestad (1996) notes, by "creatively refashioning] and adapting] the
knowledge, values, and ideas they receive" (p. 31). One strategy that Harold employed
was engaging in carefully chosen activities or occupations. As Holland et al. (1998)
suggest, "identities are lived in and through activity" (p. 5) and "signal to ourselves as
well as others where we are headed and with whom we travel. They are the means we
use to reproduce the desire for particular identities" (p. 210).
As the occupational therapy literature emphasizes, successful engagement in
occupation may enable a person to experience a sense of efficacy, control, and self-
determination and bolster self-confidence (Christiansen, 1999; Fidler & Fidler, 1978;
Kielhofner, 2002; Kielhofner & Miyake, 1983; Mocellin, 1988; Yerxa, et al., 1990).
Through the mastery of the skills and practices associated with an occupation, it is also a
means of being recognized by others as a valuable, worthy, contributing member of
society (Fidler & Fidler; Kielhofner). Engagement in occupation can thus become a
means of seeing oneself and being seen by others as a socially acceptable, competent
individual.
Throughout his adulthood Harold found great satisfaction in exploring a wide
range of occupations by joining a variety of clubs including chess, skiing, scuba diving,
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politics, computers, even spelunking. Being a "joiner" not only allowed Harold to
interact with others, but it gave him the opportunity to discover and develop new skills
and learn about himself. One of the activities that Harold discovered when he was in his
thirties was tennis, an occupation that would have special significance throughout his
adulthood.
Tennis may seem like an unlikely choice of occupation for Harold, who, by his
own admission, was uncoordinated. However, upon further analysis, this choice makes
sense in his quest for competence. While work is a highly valued occupation in the
United States, and a setting where appraisals of competence are made, sports is another
occupation intimately associated with competence. Because Harold had "failed" to
establish competence in the work arena, in spite of his academic achievements, he chose
another occupation highly valued in this culture in which to craft an identity as a
competent person. Though he was aware that he would have a lot to overcome, Harold
did not shy away from the challenge. He enjoyed working hard and being goal-directed.
Harold especially liked the idea of developing his body. As Velde (1999) notes,
developing body control or getting in touch with one's body, gives one a sense of
mastery and being in control of oneself. As his physical skills developed, Harold felt a
new sense of efficacy and a sense of satisfaction in having accomplished something from
his own resources (Fidler & Fidler, 1978). As he told me, "It felt good to feel like I could
improve in something. I was amazed at how I could learn how to play even though I was
uncoordinated!" Harold enjoyed watching his body develop, and he came to care deeply
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about his appearance. "Looking good," Harold knew, was part of feeling and being
perceived as competent.
But why did Harold choose tennis in particular? Why not baseball or basketball?
While tennis is an activity, it can also be viewed as a figured world, a recognized “field
or frame of social life where identities are crafted” (Holland et al., 1998, p. 7) and
“particular characters and actors are recognized, significance assigned to certain acts,
and particular outcomes are valued over others” (Holland et al., p. 52). With its origins
as a “gentleman's game” for the nobility in England, tennis is associated with the upper
class and gentility. Not just anyone, it seems, can be part of the figured world of tennis.
While the specialized physical skills of tennis are important, sportsmanship and mental
toughness are also highly valued. There are also specific styles of presentation that are
an essential part of the game, particular ways of interacting and behaving are an integral
part of being a tennis player. Unlike in baseball and basketball where players “talk trash”
and often show their emotions, tennis players are supposed to be proper and maintain an
even disposition Artifacts, a way figured worlds are evoked (Holland et al.), are an
essential part of the performative aspect of tennis. Particular brands of rackets and dress
have special significance. For Harold, being part of this figured world gave him a
“positional identity” (Holland et al.), a position he associated with competence. This was
especially significant to him given his upbringing in an upper middle class family.
According to Kielhofner and Miyake (1983), “most individuals who experience
themselves as competent in some feature or aspect of their lives have access to
environments, persons and materials that allow them to perform adequately, well or
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superbly” (p. 261). Though Harold struggled to support himself, he did receive financial
support from his family that enabled him to have access to tennis courts and equipment.
More importantly, however, what enabled him to construct an identity of competence
was his access to someone to guide him. As Strauss (1959) notes, the construction of
identities often involves “coaching” or having a mentor.
Not long after Harold became involved in tennis he met Monty, the tennis coach
at the university where he was taking classes. He described this meeting as an important
event in his life:
I was playing—somebody else was giving me a tennis lesson. And I got mad on
an old racket and I put it in the trash can. And Monty saw me do that and he
talked to me. See, he thought he could help me. Isn't that amazing! He showed
me the broken racket. That's how I met Monty.
Though Monty had passed away two years before I met Harold, he was still an
important figure in Harold's life. A photo of Monty was hung on the wall of his living
room and Harold took great care of his rackets and other equipment that were gifts from
Monty. In our conversations, Harold often referred to Monty, describing him variously as
"like a father image," "the best friend I ever had," and "someone who helped me improve
with respect to my capacity." As White (1971) points out, having another person who
respects one's capacities is essential in developing a sense of competence. With great
patience, Monty taught Harold the fundamentals of tennis, instructing him not only how
to execute the classic strokes, but also much about the social and psychological aspects
of the game. Monty was, in large part, the person who recognized Harold's potential and
verified and valued Harold's accomplishments not just in tennis, but in other aspects of
his life, something Harold never felt that he had gotten from his family. Through Monty,
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Harold began to see the connection between tennis and "becoming" the person he hoped
to become. As Monty wisely advised Harold, "being a good tennis player makes you into
a super person."
“A Very Depressing Time”
In spite of his great efforts to construct a life for himself where he felt and was
viewed as competent, as the years passed, Harold found himself increasingly depressed.
He steadfastly refused to acknowledge himself as "disabled," to accept the status of
incompetent. The tension with his mother increased as she began to withhold financial
support. As Harold told me, "I refused to say I was disabled. So, my mother gave me less
money because I wasn't conforming." Because of his dwindling funds, Harold was
forced to move to a less than desirable neighborhood, sharing a house with a man who
Harold described as "a shady character, an alcoholic who I later found out probably ran a
prostitution business." His limited income forced him to curtail his participation in many
of his activities, though due in part to Monty's generosity, he found a way to maintain his
participation in the tennis world. To save money, Harold limited his food intake and his
weight plummeted, sapping his energy. Eventually, Harold's financial situation became
untenable and with his debt mounting, he was forced to declare bankruptcy.
During this period, Harold's mother became acquainted with a well-respected
doctor, an expert on autism and developmental disabilities, and she insisted that Harold
see him. This doctor diagnosed Harold with autism. However, because of his continued
anger at his mother, Harold paid little attention to the diagnosis, feeling that this was
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another one of her attempts to place him in the disabled role, a way to heighten his sense
of incompetence. All in all, Harold described his 40s as "a very depressing time."
The Process of Becoming: Three "Turnings"
After reaching what he called a “low point” in his life, Harold experienced three
significant transitions, or what Mandelbaum (1973), in his work on life history, calls
“turnings.” Turnings in this sense are “the major transitions that occur when the person
takes on a new set of roles, enters into fresh relations with a new set of people, and
acquires a new self-conception.” (p. 181). For Harold these three turnings were
significant in his quest to construct an identity as a competent individual.
Becoming Catholic
In 1992, Harold decided to take instruction in Roman Catholicism, which
culminated in a conversion ceremony on Easter, 1993. When I asked him why he
decided to convert, Harold had difficulty articulating the reasons for this decision. In an
early interview, he told me, “It was kind of an emotional thing.. . . I guess I've always
been kind of close to Catholicism all my life so it wasn't that difficult for me to do.”
Harold explained that having been raised Episcopalian (though his mother converted to
being a Quaker), he had some familiarity with the Catholic religion in addition to an
intellectual interest, which began when he visited Rome as a child. Later, Harold told me
that he thought converting to Catholicism would help him to become “more in control.”
Harold's religious involvement also was important in his construction of a "moral
identity," which Gergen (2002) defines as "one's definition as a worthy and acceptable
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individual by the standards inhering in one's relationships" (p. 12). According to
MacIntyre (1981), it is through membership in communities that one constructs a moral
identity. For Gergen, one's moral identity is part of a creating a narrative of the self. As
he writes, "to intelligibly narrate oneself as a stable and coherent individual (stability
narrative), who is attempting to achieve a standard of excellence (progressive narrative),
and is fighting against earlier setbacks or injuries (regressive narrative), is to approach a
state of moral identity." (p. 12). For Harold, religion was a way to add stability to his life,
which had been full of ups and downs. By attending mass regularly and participating in
other structured, prescribed rituals, Harold found structure he had been looking for. As
he said, "my religion helps me become more stable, something I didn't have before."
Through the church, Harold found outlets for becoming a "good Christian," which he
defined as "doing good deeds, helping others less fortunate than me." For Harold, doing
what was "right," carrying out his duties as a Christian became part of his daily life. He
reminded me on more than one occasion, proudly quoting Robert E. Lee, "Duty is the
noblest word in the English language."
The church also provided new social outlets and a sense of community.
Continuing his pattern of being a “joiner,” Harold became a member of a Catholic social
group, which gave him the opportunity to participate in typical social events, such as
dinners and dances, with other adults who shared his values. Excitedly one day, Harold
told me that he was going Christmas caroling that evening with this group and he
explained why he looked forward to it: “It's something I do every year. It's a nice thing to
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do. I guess the old folks appreciate it. Makes them feel good.. . . It's important to do
things like that.”
The importance of Catholicism in Harold's life and its relationship to becoming a
competent individual became very clear to me one Sunday. After I expressed interest in
learning more about his religious involvement, he invited me to attend his church where
he served as an usher each week. I did not spot Harold in the large, ornate and cavernous
church when I first arrived, and it was not until 10 minutes into the mass that I saw him.
As I noted in a fieldnote:
Harold was standing in the back near the door, his hands carefully folded in front.
He was dressed neatly in a black three-piece suit, white shirt, dark tie, and well-
shined black shoes. His expression was serious as he indicated to a latecomer
where to go. When it was time for the collection, on cue, along with the other
ushers, Harold came to the front of the church and, in a most unobtrusive way,
moved from aisle to aisle with the collection basket. He looked very earnest,
nodding to people as they put their money in the basket. For communion, Harold
again moved to the front of the church to help organize, signaling when it was
time for each row to go forward. When the line shortened, Harold went up and
took communion, his expression remaining solemn, his attention undivided. At
the end of the mass, Harold nodded to and occasionally shook hands with people
as they filed out. He then began to straighten up the pews.
It was evident to me that being a part of the Catholic community and engaging in
the occupations of the church had great symbolic meaning to Harold. Being an usher
gave Harold a particular role, a positional identity. In this world, Harold felt like and was
seen as an upstanding and devout member of the church—a responsible, moral, and
competent individual.
M y M other's Death
A second turning came in 1994 when Harold's mother died. For Harold, there
was little sadness when he learned about the death of his mother, a woman well into her
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80s. Throughout his adult years, his relationship with his mother was contentious at best.
Instead of abandonment, her death symbolized autonomy and control, a newfound
freedom to live his life, to become who he hoped to be. As Rogers (1982) suggests, to
become a competent agent in the world requires the expression of choice and control.
In addition to the emotional freedom that Harold experienced, a certain degree of
financial freedom also resulted after his mother's death. Instead of his mother deciding
when and for what she would send him money, now he received a monthly stipend from
a trust fund.5 This monthly allowance allowed him to move into his own apartment and
to create a living space that helped him to feel more respectable.
I'm an Aspie!
The third and final turning came in 1998. Harold had been substitute teaching for
many years when one day in conversation with a teacher he mentioned that he had been
diagnosed with autism. The teacher asked if he had ever heard of Asperger's syndrome,
Harold had not but when he returned home at the end of the day, he searched the Internet
for information. The descriptions of Asperger's syndrome and autism he read resonated
with him. Now that his mother had passed away, Harold was, for the first time in his life,
willing to consider a diagnosis, and he contacted the doctor who had diagnosed him with
autism to confirm his suspicions. While the negative consequences of labeling are often
emphasized (see for example, McDermott & Varenne, 1995; Olney & Kim, 2001),
receiving a diagnosis can often be a relief (Garro, 1992; Webster, 1989). For Harold
5 Receiving money from this trust fund, which was overseen by a bank, though initially
liberating, became a source of much frustration. Harold often raised this as an issue for he
was unable to obtain the funds he required to have some much needed dental work or to
buy a computer, things he felt he should not have to justify.
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putting a name to what was “different” about him, was, in fact, something of a
revelation. Now he had a reason for his behaviors that had always been so puzzling to
him and others. His diagnosis was, in many ways, an opportunity to reconstruct his sense
of self.
Well, it was kind of a relief to find out what was wrong with me. Now I
understood why I behaved the way I did.. . . I didn't know anything about what
to do about it. Now this is a funny story. So I found out there was a conference. I
kept checking the Internet. For some reason I couldn't find out that AF (a local
organization) existed. And so I found out there was a conference in
Indianapolis—it's the damnedest place—so I go all the way to Indianapolis to go
to a conference on autism!
As it had been for Ben, attending a conference on autism was liberating for
Harold. There he learned more about autism by attending presentations and meeting
other adults with autism and Asperger's syndrome. In fact, it was at this conference that
Harold met others from Los Angeles, beginning his involvement with AACT.
Receiving a diagnosis of Asperger's syndrome and embracing such an identity
was life changing for Harold. Much like the alcoholic in Alcoholics Anonymous who
learns to re-narrative their lives (Cain, 1991), Harold began to see his life in a new way.
With the diagnosis, he had a new way to interpret his past, his present, and imagine his
future. Harold told me many stories of his childhood, something he had never been able
to make sense of before. Categorizing his behaviors as “autistic,” Harold was able to
look back on his childhood in a whole new way:
When I was young I would go through the door swinging routine. I'd do that for
hours.. . . And then I used to daydream and frap my pencil. So autistic! . . . I had
my routines and then I got into Astronomy—just typical Asperger's stuff.
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With this reinterpretation of the past, Harold could better understand why his life
had unfolded as it had. His difficulties as an adult now made more sense to him. Instead
of seeing himself as so different from others, Harold now saw that his behaviors and his
occupational choices were similar to others with high functioning autism. During our
conversations, Harold frequently made references to how he was like others with the
same diagnosis. For example, in explaining his interest in computers Harold said, "Like
others with Asperger's, I relate to computers well." In addition, Harold was able to see
his "people problems," especially his employment difficulties, in a new light. Putting
clinical terms to his behaviors such as "limited eye contact," "sensory overload," and
"poor non-verbal communication," helped Harold understand why he had always
struggled in the social world. For example, Harold saw that his sensory problems often
interfered in social situations. As he explained, "Our brains don't know how to react to
stimuli for some reason. So sometimes I over-react or under-react."
As a result of his newly acknowledged disability, Harold changed the way he
orchestrated his occupations. He no longer forced himself to participate in certain social
occupations that made him feel ill at ease:
My life has changed quite a bit after I found out I had Asperger's. I don't try to
socialize quite as much as I did. And I figured I'm basing it on someone with
Asperger's.. . . I didn't go to the dance last week because it gets so loud and I
don't really enjoy myself anyway.
Harold also had a new way of viewing his occupational performance and hence
his sense of competence. He no longer compared his performance to a "neurotypical"
person, but rather he evaluated his skills using a new reference point. Instead of feeling
like a failure for his employment woes, Harold now felt that given his diagnosis of
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autism, holding a job as a substitute teacher for over a decade was something of an
accomplishment. He also viewed his tennis skills in a new light. Harold frequently
mentioned that he played tennis "pretty well, especially for someone with autism."
This new identity as an individual with autism opened up new worlds for Harold.
Like Ben, Harold entered into the figured world (Holland et. al, 1998; Skinner et.al.,
2001) of “Aspies,” a world that enabled him to continue to construct his identity as a
competent person. He began attending AACT meetings and began dedicating his time to
this group. Quickly, he found himself in a leadership position as facilitator of the group,
a new experience for Harold. Within this community, he was seen as organized, reliable,
and hard working, and for these qualities, he was highly valued. With this new positional
identity, “a person's apprehension of her social position in a lived world” (Holland et al.,
1998, p. 127-128), Harold had the opportunity to engage in new occupations. Soon he
was invited to speak on panels about his experiences as a person with autism and to join
the Board of Directors of the Autism Foundation (AF), the organization that sponsored
AACT. As the only representative of people with autism on the board, Harold viewed
this invitation as an indication that others, “neurotypicals,” viewed him as competent.
In all figured worlds, hierarchies exist. In the Aspie world, it became evident to
me that functioning level mattered—and it especially mattered to Harold. His sensitivity
to competence made him look at the Aspie world in a hierarchical manner, making a
clear distinction between people who are “high functioning” and those who are “low
functioning.” Harold saw himself as “high functioning” and more successful than many
of the people at AACT. His positional identity allowed him to feel a sense of competence
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in relation to others with a similar diagnosis. As he explained, “I care about the way I
look, I have many degrees, I have a job and outside interests. And I'm emotionally
involved in what I do.... Not everyone with autism is like that.”
Though feeling and being seen in the Aspie world as valuable and competent was
important to Harold, he still wanted to maintain other identities, to be acknowledged as
worthwhile and competent in other communities in the neurotypical world. Thus Harold
was always very conscious of how he acted and looked in public, and always tried to
“compensate” for his behavior. Harold was acutely aware of the need to present himself
to others, to manage their impressions of him (Goffinan, 1959). One day, while talking
over coffee, Harold surprised me by saying:
I constantly think that life is a big show. . . . I got that idea from a book The
Italians. Written in 1957. That kind of influenced my life a little bit though... .
The idea is you're constantly like on stage. Life is a stage and you have to act on
the stage.
Being on “the stage” required a tremendous amount of work as Harold explained
later in the interview:
I try to be careful because I'm always afraid I'm going to do something dumb or
stupid because I have autism... .You have to be cautious because you don't know
the effect is of what you're doing—or lack of effect. So it makes it harder in
social situations.. . . I always have to be careful.
Having come to be diagnosed so late in life, Harold's perspective on the
diagnosis was quite different from many of the other AACT members who saw no need
to pretend to be normal. His view of autism was that it is neither something to celebrate
nor something to mourn. As a speaker on a panel to a group of parents with children with
autism, Harold said:
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[My] high functioning autism often results in inconvenience, pain, and suffering.
However, it's not the end of the world. Obviously it's not nearly as bad as having
some disease with a diagnosis with an eventual prognosis of death. Mainly it
wouldn't be as bad—maybe not even as bad as chain smoking!
In addition, Harold saw autism as just one of his identities, an identity he felt no
compunction to hide from others. As he explained, "It's [autism] a part of who I am. I'm
also Catholic, a substitute teacher, a tennis player. There's nothing to be ashamed about.
But it's not the only thing about me. It's like one facet of a diamond."
“The Older You Get, the Better You Become”
For Harold, the new millennium brought better times. He saw himself “getting
better all the time,” “more functional and more mature.” He no longer saw a bleak future
for himself, but rather had visions of “possible selves” (Markus & Nurius, 1986), new
ideas of who he might become.
No longer satisfied with substitute teaching, which provided few rewards
(though a steady pay check and benefits), Harold wanted to do something more
“worthwhile,” something that contributed to society and allowed him to be financially
independent. With a new sense of his past, present, and possible futures, Harold decided
to return to school to earn a teaching credential in special education, with the hopes of
completing a master's degree. His goal was to teach adolescents with high functioning
autism, “kids like myself.” Harold gave this decision a lot of thought, since he knew that
obtaining additional college degrees had not helped him obtain employment in the past.
This time, Harold felt that he had something unique to offer—his life experience. For
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Harold, obtaining a “respectable” job was another part of his process of constructing an
identity as a competent individual. Discussing his decision with me one day, Harold said,
“I think it's about my own self-esteem; it's not just about making a living.”
Engagement in occupation continued to be important in Harold's process of
"becoming." Tennis still served as an important marker of competence in Harold's life.
As I wrote this dissertation, Harold and I spoke and visited from time to time and he
always, with great enthusiasm, updated me on his tennis game. In spite of his strained
budget, the result of enrolling once again in classes, Harold was attending a weekly
tennis clinic and had joined a tennis league. In a recent conversation, Harold spoke with
a lightheartedness I had not ever heard before:
My tennis was amazing! My serve was wonderful! I've got a better change of
spin—a lot better change of the spin. So I can slice it or put topspin on it. And
Andy [a coach] said it's good. Later, I was playing singles with somebody and the
other person said that she couldn't—that she didn't know how she was going to
return my serve (laughs). Boy! That gives you confidence, doesn't it?
Harold knows that he will continue to face a variety of challenges in his everyday
life, but he has a sense of who he is and who he is becoming. He has found, through
successful engagement in carefully chosen occupations in particular figured worlds,
ways of feeling and being seen as a competent, worthwhile, and happier individual. As
we discussed getting older one day Harold said:
It's taken me a while, but I feel happier now than I ever have. I think for people
with Asperger's, the older you get the better you become. I guess it makes me
happy when I feel I've accomplished something.. . . Success at something makes
me happy. It doesn't have to be living in Beverly Hills (chuckles) or Brentwood,
but being successful in what you're trying to do.
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CHAPTER 9
DOING, BELONGING AND BECOMING
In this dissertation I have shown how adults with high functioning autism create
meaning in their lives by constructing identities within social worlds. The stories, both
individually and collectively, reveal a great deal about both the nature of autism and
identity. In this chapter, I discuss how this research contributes to the discussion about
autism and, more specifically, how it challenges many of the prevailing ideas. Next, I
show how my research supports the claim that identities are not stable, unified, nor
progressively developed. Instead, I argue that people have multiple identities constructed
within specific contexts that change over time. I then expand on this notion and discuss
how the participants constructed their identities within communities, a process of
“doing, belonging and becoming.” Lastly, I discuss the implications of this research for
occupational science.
Autism: Shifting the Focus
The literature on autism suggests that individuals with high functioning autism
have significant deficits interacting with others, creating and enacting narratives, and
engaging in occupation. Thus they lead marginalized and relatively isolated lives. It
seems logical then, as McAdams (1997) suggests, that people with high functioning
autism would have great difficulty constructing identities and hence, creating a
meaningful life. However, this ethnographic study, focusing on what individuals with
autism actually do (rather than on deficits), revealed that the four participants with high
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functioning autism not only crafted identities, but did so creatively. They were
remarkably skilled in finding ways to interact with others and surprisingly resourceful in
using narratives and occupations to construct their identities, though they did not always
do so in an expected or "typical" manner.
In many respects, the participants’ stories challenge traditional ideas of autism.
All of the participants desired meaningful relationships and were successful, to some
extent, in developing social networks. Mina, for example, established many enduring
friendships, particularly with older men and other people who also lived on the margins
of society. Over the course of the study, I met many of these friends, and I was quite
amazed to see how Mina was able to rally support when she needed it. Stewart also had a
surprisingly rich social life. Inevitably when I was visiting him, a friend would phone to
chat or to make plans for an outing. As I often told him, Stewart's social life was, in fact,
far busier than mine.
The participants' ability to tell stories and to see their lives as an unfolding
narrative was also surprising. The stories I heard were generally told in a nontraditional
manner, which at first was somewhat disconcerting. However, as I became familiar with
each person’s narrative style, I discovered that these narratives were unexpectedly rich
and full of emotion, hardly the "impoverished" narratives described in the literature.
Constructing stories to give life coherence, to connect past, present and future together,
was a strategy the participants often used. Harold, for example, told stories of his
childhood, reinterpreting events that occurred in light of his relatively recent diagnosis
of autism. Stewart made sense of many of his life experiences through the narrative
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lyrics of his songs, and throughout her life, Mina wrote stories, culminating in the
writing of her autobiography. Sadly, the participants had very little experience sharing
their stories with others. As I was often told, "no one ever asked me about that before."
The occupations in which the participants engaged were diverse and in many
ways, remarkably typical. Their everyday lives involved taking classes, going to work,
exercising, participating in various groups, and engaging in favorite hobbies. The
participants had many interests, some rather idiosyncratic, others more mainstream,
which they enthusiastically shared with me. Unexpectedly, I learned a lot about
nanotechnology, Romani, and the history of jazz. Though some of the participants'
occupations in were initially puzzling to me—why, for example, did Mina write stories
about Gypsy girls, and why did Harold persist at tennis in spite of his marginal skill
level—it was only after I began to piece their life stories together that I understood the
significance of these occupations and how important they were in the process of
constructing identities.
Identity: Entering the Discussion
The stories I have presented also tell us a great deal about identity. Each of the
participants in this study had a unique way of crafting their identities that was influenced
by the historical epoch, the socio-cultural environment in which they lived, and their
personal characteristics.
Ben’s story concerns the struggle to resist the powerful discourse of “normalcy,”
in which individuals with disabilities are marginalized. It is also about the challenge of
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orchestrating voices and self-authoring (Bahktin, 1981; Holland, et al., 1998), as Ben
worked hard to negotiate between the conflicting discourses of his newly discovered
“Aspie world” and the “neurotypical world” in which he would inevitably find himself a
part. Eventually Ben learned what was to be a painful lesson: constructing identities is
not an “either/or” proposition; rather it is an “and” proposition. He could not just be an
“Aspie” living in the “Aspie world,” for as he discovered, the social world and his sense
of self were far more complex. Ultimately then, this story is about Ben’s discovery of the
need to construct multiple identities in multiple figured worlds.
Mina’s story leads us to consider the importance of narrative in the construction
of identity. Throughout her life, Mina wrote, told and enacted stories that allowed her to
become, to some extent, the author of her identities. Narrative was a strategy Mina used
to help her create a sense of continuity in her life, allowing her to maintain an identity as
a Gypsy, in spite of the many disruptions and detours she encountered. Mina’s story
highlights the relational and “doing” aspects of narrative and identity, as the telling and
enactment of narratives requires interaction with other people and participation in
particular activities. Mina eventually came to realize that, in spite of her efforts to create
a unified identity as a Gypsy, she found the need to construct other identities. Turning
once again to narrative, Mina began writing her autobiography to better understand how
her past and present was comprehensible in light of her newly constructed autistic
identity.
In Stewart’s story we see how identities are crafted by creating significant
experiences and engaging in activities within social worlds. His story shows us how
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identities are performed and celebrated through participation in rituals and other
meaningful events that take place within communities. In addition, his story illustrates
how identities shift as life unfolds. Though individuals with autism are often portrayed
as resisting change and leading rather monotonous lives (see for example, Bemporad,
1979), Stewart’s life, and those of the other participants, were surprisingly complex or
“in motion,” to borrow Elder's (1998) phrase. An unexpected life event, the death of
Stewart’s father, led to a turning point in his life. Following this disruption, Stewart
began to imagine new identities for himself and began the process of constructing his
identities, situating himself in ever widening social worlds.
Harold’s story focuses on the symbolic meaning of occupation in crafting
identities, how tennis became an important way of constructing an identity as a
competent individual. His story, like Ben’s, points to the power of discourse and the
struggle to resist imposed identities, such as an identity of incompetence that his mother
and others attempted to inscribe on him. In Harold’s story we also see how people strive
to actively craft multiple identities in various social contexts. Harold was not only a
tennis player, but he was a substitute teacher, a devout Catholic, and an “Aspie.” He
learned to perform these identities, to act in very different ways in different contexts,
even though it required a tremendous amount of energy. As in the other stories, Harold’s
story also shows us how experiences and unforeseen events lead to the crafting of new
identities. For Harold, receiving and accepting a diagnosis of Asperger’s syndrome was
a significant turning point in his life that gave him new ways of thinking about his past,
present and future.
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These stories provide strong support for the ideas put forth by the social
constructionists who suggest that people do not have a unified, stable identity, but rather
at any given time individuals have multiple, socially situated identities (see for example,
Holland et al., 1998; Kondo, 1990; Mishler, 1992,1999). Rather than living in one social
context, people find themselves—and perhaps need to be simultaneously—a part of
multiple worlds where identities are actively constructed within “fields of power and
meaning” (Kondo, p. 47). These multiple identities are sometimes intersecting and
compatible, while at other times they are highly disparate and incompatible. This
research supports the idea that the process of constructing identities is not simple.
Crafting identities requires hard work and creativity because, as Goffman (1959) argues,
identities must be enacted or performed convincingly to others. The fact that identities
can be contested, negotiated and resisted further complicates the process.
The stories in this dissertation point to the “centrality of discontinuities”
(Mishler, 1999, p. 8) in the construction of identities, lending support to Mishler’s (1992,
1999) claim that identities do not develop in a fixed, predictable way but are continually
recrafted and reconfigured over time. The process of identity construction involves
“detours, recursions, embedded cycles, that are responsive to culturally framed and
socially situated alternatives” (Mishler, 1999, p. 36-37). My research also clearly points
out that identities are not “achieved,” as stage theories of identities posit (see Erikson,
1963), but rather that the process of constructing identities is “ongoing—indeed a
lifelong—occupation” (Kondo, 1990, p. 48).
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Do these findings negate ideas of cohesion and continuity put forth by many
scholars who may advocate for a traditional narrative perspective of identity? Can
identities be both cohesive and fragmented? This research in many ways highlights this
tension and raises questions to consider. People, it seems, strive for stability and search
for ways to see their lives and identities as having continuity. Yet at the same time, they
experience disruptions and discontinuities. Perhaps it is best to think of continuity, as
Becker (1997) does, as a deeply held cultural value which, in fact, is an illusion. She
does not, however, see this as problematic. She writes, “Although continuity in life is an
illusion, it is an effective one: it organizes people’s plans for and expectations about life,
as well as the ways in which they understand who they are and what they do” (p. 191).
While it is unlikely that an individual will ever craft a single, unified identity, my
research suggests that people use narrative to create a sense that each of their multiple
identities is cohesive. This leads me to suggest that while ideas of cohesion and
fragmentation of identity may appear contradictory, the two views may in fact
complement each other. This a fertile area for further research.
Constructing Identities in Communities: Belonging and Becoming
Perhaps one of the most striking similarities in the stories of the four participants
is the intensely social nature of identity construction and the importance of locating and
becoming part of communities or figured worlds (Holland et al., 1998). Only recently
has the importance of community been highlighted in discussions of identity, thus I
discuss this in some depth. A community, as I use the term here,1 is not necessarily a
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specific place but rather a group of people who share experiences and particular
practices, including occupations, narratives, artifacts, and vocabulary (Holland et al.,
1998). Identities are constructed by participating in these practices that have special
meaning to the members of the community, practices I call practices of identity.
Narrative is an important practice of identity intimately connected with
community. Communities, as many scholars have noted, have certain narratives that
provide members with symbols, plots and characters through which events can be
interpreted and experiences made understandable (Bruner, 1986, 1990, 2002;
Polkinghome, 1988). Narratives, according to Hinchman and Hinchman (2001),
“explain a group to itself, legitimate its deeds and aspirations” (p. 235). Narratives, “with
the values they prescribe.. .. form the basis of communities large and small, and thereby
define who we are” (Hinchman & Hinchman, p. 235).
Occupation is another important practice of identity. As Christiansen says,
"occupations constitute the mechanism that enables persons to develop and express
identity" (p. 556). In essence, we craft ourselves through doing. Though much of the
literature on occupation emphasizes the personal meaning of occupation, Christiansen
underscores the importance of viewing occupation as a social phenomenon. He states
that occupations are "performed in a social context that gives them symbolic meaning"
(p. 555). Extending Christiansen's work, I propose that it is the performance of
occupation in the social context of communities that is crucial to constructing identities.
1 I have chosen to use the term community throughout the remainder of the chapter for
simplicity. However, I use this term in a way that is very similar to the concept of figured
world as discussed by Holland et al. (1998).
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Engaging in the occupations of a particular community is a powerful means of
communicating, to ourselves and to others, who we are.
Since constructing identities is a primary means of making meaning in life, it
follows that belonging to a community is a fundamental longing of most humans
(O'Donohue, 1999). Indeed, this was the case for all of the participants. However,
becoming part of a community was not always a simple process and for the adults with
high functioning autism in this study, it was often rather painful. Being teased, shunned,
and ultimately rejected, particularly in adolescence, was a commonly told story.
Understanding the practices of identity of the community was often problematic, leading
to frustration and confusion. For example, when I met Ben, he was struggling with how
to join the “college world.” He tried to engage in the identity practices of the community,
but often felt more isolated as a result. On more than one occasion, Ben said that he did
not know how to participate in everyday conversations with other students. He also
found many of the campus activities to lack meaning. Work communities were
particularly challenging for many of the participants. Stewart, though employed by the
same company for over a decade and in spite of his many attempts to belong, found the
social aspects of the work world confusing. Thus he remained a peripheral member of
this community.
Despite these obstacles, the participants were unwilling to accept a life devoid of
social interaction. Illustrating the agentic work of identity construction, they drew on a
variety of personal and cultural resources to locate communities. Locating communities
was a creative endeavor requiring imagination, ingenuity, persistence, as well as some
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risk. All of the participants spent a great deal of time “trying out” communities in order
to find the right fit. Stewart was particularly adept at this. After discovering AACT and
attending a few meetings, he realized that his belonging needs could not be met within
this community. Eventually he found another community, a self-advocacy group, where
he could express himself and interact more comfortably. Ben struggled much more with
the process. Throughout the research, he attempted to participate in various groups,
campus clubs, Mensa, and social skills groups, hoping to find a place where he fit in.
Though frustrated to the point of attempting suicide, Ben persisted in his attempts to
belong.
What were the communities that the adults with high functioning autism located?
Where did they find that they belonged? Most often these communities were ones that
were sought out, not imposed, prescribed, or encouraged by others. Communities with
the best fit were ones in which the practices of identity made sense to the participants,
where narratives and occupations were shared. As is reported in the literature, adults
with high-functioning autism, much like all people in our busy post-modern world, often
become linked to communities by virtue of common interests (Attwood, 1998). Shared
occupations often open doors to worlds that may otherwise be closed to individuals with
autism. Harold, for example, readily joined specific interest clubs, such as chess, skiing,
and computer clubs. This allowed him to participate in desired occupations with others.
However, to sustain membership in a community, to truly belong, not only must
individuals have common interests, but there must be a shared understanding of how
occupations are to be carried out and how these occupations fit into the narrative of the
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community. Harold was able to belong to the tennis world, not by virtue of his actual
athletic skills, which were somewhat marginal, but because he shared an understanding
of the symbolic aspects of the occupation of tennis. Harold understood that tennis
involved dressing, using tools, and behaving in certain ways—not just hitting a ball over
a net.
Belonging to religious communities was also quite common and figured
powerfully in the participants' identity work, a finding also reported by Hurlbutt and
Chalmers (2002). Religious communities are often highly structured, rule-bound and
seeped in ritual, which one might expect would appeal to individuals with autism, who
are frequently reported to need predictability and routine and often obsessively adhere to
rules (Attwood, 1998; Tantum, 2000). By definition, rituals are highly symbolic,
repetitive, precise, and highly stylized acts (Myerhoff, 1977), thus the narratives,
occupations and other social practices involved in ritual performances are clearly
articulated and accessible. Rituals are also highly embodied, sensory practices, which
may also be attractive to individuals with autism. For Stewart, the storied, performative,
interactive nature of rituals was particularly important to him for they were a way for
him to be seen by others and a way for him to express deeply felt emotions, which he
often had difficulty articulating. Rituals are also by nature about continuity, the sense of
both personal and collective/historical continuity (Myerhoff, 1978). While it was clear
that the importance of engaging in the same practices year after year, for example the
annual Passover Sedar, was an important marker of continuity in Stewart's life, the
connection he felt with a historical past and with other Jews all over the world was
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especially meaningful. Harold also found religious practices such as prayers, novenas,
and the rosary comforting. From a moral perspective, becoming a member of a religious
community made sense for Harold as it offered rules to live by, strategies for becoming
the “good” person he hoped to become, and occupations, such as ushering, which
enabled him to feel and be seen as a moral individual.
Not all of the communities in which individuals with autism construct their
identities are situated in the mainstream of society. Perhaps the most obvious example is
the Gypsy community to which Mina was anxious to belong. This community had
particular symbolic significance to Mina, representing a connection to her past, to her
imagined Gypsy father. Because this community has historically been marginalized, the
narratives and the occupations of the community resonated with Mina. Like the gypsies,
she had lived a nomadic life and had always been considered an outsider. However, to be
accepted and to feel that she truly belonged meant that Mina had to adopt and participate
in practices of identity unique to this community. Here again we see how engaging in
particular occupations in particular ways was essential to belonging and becoming. In
fact, much of Mina's daily life was devoted to engaging in these occupations. Dressing in
particular ways, learning the language and history, carrying out various rituals and
customs, and decorating her living space were all part of her work of becoming a
member of the community and crafting a Gypsy identity.
Other somewhat marginalized communities that the participants located and
belonged to were the “disability” communities. Like other people with disabilities,
individuals with autism often need to understand their diagnosis—the symptoms and the
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associated discourse—and transform it from an assigned and often dreaded identity into
a personally meaningful one. This is frequently done in the context of formal and
informal disability communities, which are comprised of people who not only share the
diagnosis, but more importantly, life experiences (Campbell & Oliver, 1996; Olney &
Kim, 2001; Rebeiro, 2001). The participants in the study utilized a variety of strategies
to locate others with autism. For Mina, reading the autobiographies of individuals with
autism was her first step in connecting to the autism community. Since she had never
met another adult with autism, discovering others “like herself,” people who shared
similar life stories, characteristics, and interests, was, in many ways a great relief. Not
only did she develop a better understanding of the symptoms of autism that affected her
present life, but also, with this new understanding, she was able to use this information
to reconstruct a new life narrative and hence a new sense of self. It was after her
discovery of autism that Mina embarked on writing her autobiography. For Harold and
Ben, meeting people with autism at a conference, sharing life stories, and just being with
others “like themselves” was a similarly powerful experience, a crucial step in
constructing an identity that incorporated autism in a positive way.
Each participant felt the need, at some point in their lives, to locate and become
part of a more formal, localized disability community, even if, as in Mina's case, it was
brief. Stewart felt most comfortable in communities for people with developmental
disabilities, while for others, communities specifically for people with autism were
particularly important. Finding AACT, a group run by and for adults with autism, was
for Ben, a new and transforming experience. As Ben stated, AACT was “a place where
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people didn't care what you do. As far as nobody thinking you're weird or anything like
that... It's just—be yourself.” AACT provided a place to be with “the own,” a phrase
coined by Goffman (1963). He describes “the own” as:
Sympathetic others.. .. who share his stigma. Knowing from their own
experience what it is like to have this particular stigma, some of them can
provide the individual with instructions in the tricks of the trade and with a circle
of lament to which he can withdraw for moral support and the comfort of feeling
at home, at ease, accepted as a person who really is like any other normal person
(pp. 20-21).
AACT provided a community where people were welcomed, where practices
made sense, and where life experiences were shared. It was an environment in which it
was safe to be oneself, because, as Harold told me, “others understood.” Much like a
group that Rebiero (2001) describes for adults with mental illness, AACT provided an
affirming environment. Free from having to expend energy on “acting normal” or
“managing stigma” (Goffman, 1963), AACT members felt relaxed and very much at
home. They could interact with others as they wanted, engage in the occupations of their
choice, and tell stories in their own ways without having to censure what they did or
said. The importance of having a community where “belonging needs”—“a place to go,
a place to gather, and a place to belong” (Rebeiro, 2001, p. 86)—could be met, became
evident to me as I spent time as a participant observer at AACT. I was quickly aware
that, for some members, as both a “neurotypical” and a researcher, I was an intruder and
my very presence changed the essential nature of the community.
Autism communities, like other disability communities, provide their members
with an alternative to the predominant, deficit-focused narrative of autism, where
individuals with autism are expected to try to correct their behavior in order to fit into the
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culture of normalcy. The “counterstory” (Hinchman & Hinchman, 2001) developed in
the autism community encourages people with autism to see themselves as worthy
individuals just as they are. Normalcy, or “neurotypicality” as it is called in this
community, is not something one needs to aspire to. Rather than seeing these so-called
“deficits” as problems, the narrative of the autism community suggests that these
“differences” should be valued and integrated into a positive sense of self.
“Counterstories,” as Hinchman and Hinchman suggest, often have an ironic or satiric
flavor. Thus within the autism community, various parodies have proliferated, including
those highlighting the deficits of “neurotypicals.” These were web-sites that Ben in
particular enjoyed and found comfort in. Though Harold sometimes found this narrative
“a little militant,” it allowed him to see himself in a new light and to see autism as
something other than a dreaded identity. In fact, Harold was quick to remind others that
having autism wasn't as bad as being “overweight or a chain smoker.” Autism was not an
identity Harold felt compelled to hide and he often wanted people to know that he had
autism. To do this, on many occasions, Harold proudly wore his AACT or AF tee-shirt in
public places. For Harold, being autistic was part of who he was, though as he often
reminded me, it was just one of his many identities.
Within communities, members have positional identities, what Holland et al.,
(1998) define as “a person's apprehension of her social position in a lived world.”
Interestingly, even within the autism community something of a hierarchy exits, with the
social category of “functioning level” an indicator of status. Because of his higher
functioning level, Harold was afforded a position of some power within the AACT
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community. Like Stewart had found in the developmental disability community, this
gave Harold the opportunity to construct a previously inconceivable identity not only as
a competent person, but as a leader.
The participants also had access to a new phenomenon—virtual communities. As
Blume (1997), Singer (1999), and Ward & Myer (1999) have noted, individuals with
autism have utilized the Internet effectively to both form and join communities. Indeed
all of the participants used the Internet extensively to connect to a variety of on-line
communities. For Mina, who had limited access to transportation, “virtual communities”
became her main means of connecting with others in both the Gypsy and autism
communities. For Ben, participating in autism communities via the Internet, as well as
those devoted to his interest in nanotechnology, allowed him a sense of freedom he often
did not feel when interacting face-to-face. In Internet communities, non-verbal
communication and “mind reading,” which are so important in most social situations, are
essentially eliminated. Freed from these social requirements, the range of communities
available to Ben and the other participants was greatly expanded.
Identities, as I have previously claimed, shift as life unfolds and thus
communities also change. It is particularly interesting to consider these shifts in light of
developmental changes. As McAdams (1993) notes, narratives of identity at one
developmental stage are generally revised as people move into new stages of their lives.
Indeed this appears to be true for adults with high functioning autism. As the participants
got older, their ideas about who they wanted to become changed significantly, hence
their narratives reflected a shift to a more "agentic plot," one in which "the protagonist is
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persistent and shows purpose and commitment" (Polkinghome, 1996, p. 301). In many
ways, the shift in purpose and commitment was as Stewart suggested, to "doing
something for the bigger world." Both Harold and Stewart, the older participants in the
study, became more concerned with generativity, leaving a legacy, and with helping
others, especially others with disabilities. Stewart's new identity included being a self
advocate and speaking out on disability issues, while Harold hoped to become a special
education teacher for adolescents with autism. Even Mina's autobiography, which began
as a project largely to help her make sense of her own life experiences, became a project
to help others with autism. No longer content with having their belonging needs met in
localized and somewhat safe communities, the participants ventured out into
communities that were, in some ways, a bit more risky, but essential for constructing
these new, hoped-for identities. As their lives unfolded and their narratives evolved, the
participants became more adept at being part of multiple communities and ultimately at
constructing and negotiating between their sometimes intersecting and sometimes highly
contrasting identities.
Implications for Occupational Science
Throughout this dissertation I have mainly been concerned with how adults with
high functioning autism construct identities, and I have discussed how the findings of the
study challenge some of the traditional notions of autism. My hope is, however, that
these findings have implications beyond this particular group of people and contribute to
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and extend the discussion about occupation and identity within the field of occupational
science.
First, the findings of this study support the notion that identity and occupation are
intimately connected. As many scholars have suggested, our occupations reflect, to
ourselves and to others, who we are (Christiansen, 1999; Clark & Carlson, 2000; Clark,
Wood, & Larson, 1998; Jackson, 1995, 1996). I have suggested that occupation be
considered a powerful practice of identity. It is by choosing and engaging in particular
occupations in particular ways that we begin to construct identities. Simply stated, to
become a certain person, we do certain things. As Wilcock (1998) suggests, occupation
is about both doing and becoming.
A second point I wish to highlight is that occupation, as a practice of identity,
must be regarded as a social practice. Occupations are embedded in social contexts and
are, most often, about doing something with someone else (Lawlor, in press). I have
suggested that occupation must be conceived of not only as having meaning on an
individual or dyadic level, but as importantly, in the context of communities. As social
beings, humans have an innate desire to belong, to be a part of a community. Very often
it is shared experiences and shared occupations that link people to communities. By
participating in occupations that are valued by a community, we develop a sense of
belonging and hence create our identities. Though rarely discussed in the literature,
occupation is an essential aspect of what Rebeiro (2001; Rebeiro, et al., 2001) refers to
as one's “belonging needs.”
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Third, to better understand the relationship of occupation and identity, it is
important to consider occupation as a part of one's personal narrative. As many scholars
have suggested (Carr, 1986; MacIntyre, 1981; Mattingly, 1998; Polkinghome, 1988), life
itself has a narrative form, with plots emerging and changing as life unfolds. This
research lends support to the idea that occupations are embedded in our ongoing life
story. The personal meaning of occupation becomes more apparent when viewed as part
of a life narrative that is shaped by social interactions and social discourses. In addition,
occupation is not just part of the stories we tell about our past and present, but it is
through occupation that we enact future stories, our hoped-for identities (Mattingly,
2002). Throughout our lives then, our occupations shift and change, contributing to
revised narratives and identities.
Concluding Remarks
During our time together, the participants often discussed what they hoped
others would learn from this research. Early on Ben told me that he had volunteered to
be a part of this and other studies because he felt that adults with autism are
“misunderstood.” He said:
You know, you [people] sort of assume that because people [with autism] tend to
be maybe not as responsive to, to nonverbal cues or they have a flat affect or
something, you know, talk logically, that you sort of assume that the whole
internal experience is that same way— sort of flat.... But it's not really like that,
you know? People need to know that. I may be different but I've got feelings too.
They need to stop focusing on what's objectively wrong and spend time looking
at who I am and what I can do.
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I hope that I have, to some degree, met Ben's expectations and have clearly
illustrated that the lives of adults with high functioning autism are complex and full of
emotion. If this ethnography serves no other purpose, I hope it will show that individuals
with autism, like other people, can create rich, meaningful lives.
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APPENDIX A
DIAGNOSTIC CRITERIA FOR AUTISTIC DISORDER
FROM THE DSM-IV (APA, 1994)
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and
one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of
the following:
(a) 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
(b) failure to develop peer relationships appropriate to developmental
level
(c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people (e.g., by a lack of showing, bringing, or
pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the
following:
(a) delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability
to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests and
activities, as manifested by at least one of the following:
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(a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in intensity or focus.
(b) apparently inflexible adherence to specific, nonfunctional routines or
rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger
flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays of abnormal functioning in at least one of the following areas, with onset prior
to age 3 years: (1) social interaction, (2) language as used in social communication, or
(3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood
Disintegrative Disorder.
212
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APPENDIX B
INFORMED CONSENT
TITLE OF PROJECT: Meaning, Experience, and Occupation: An Ethnographic Study
of the Lives of Adults with High-Functioning Autism
PRINCIPAL INVESTIGATOR: Nancy Bagatell
INVESTIGATOR/FACULTY SPONSOR: Cheryl Mattingly
DEPARTMENT: Occupational Science and Occupational Therapy
24-HOUR TELEPHONE NUMBER: (310) 446-4430
FACULTY SPONSOR TELEPHONE NUMBER: (323)442-2850
PURPOSE OF THE STUDY
You are invited to take part in a study about the lives of adults with autism. This form is
provided to help you decide if you want to participate. The purpose of the study is to
learn how people with high-functioning autism use their everyday activities to give their
lives meaning. I am recruiting about five adults with autism to take part in the study.
PROCEDURE
If you decide to be a part of the study you will:
1. Spend time with me as you go about your everyday life. This might be at your home
or your work place or at a friend's house. We will get together about 10-12 times over the
course of six months. I will spend from one to two hours with you each time, or more if
you are willing. At times, I may take notes or I may audio tape the session, if you are
comfortable with that. If you agree to be videotaped, I will sometimes have a video
camera to record our time together. I will later use these notes and recordings in my
research, but the tapes and notes will stay confidential.
2. Be interviewed by me about once a month for six months. The interviews will be
informal. They will be about your past and your present life. You may choose where you
would like be interviewed, and each interview will last about one hour. If you agree, I
will tape record the interview so that I can review what we've said. I will type out the
recording word for word. This will also be confidential.
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RISKS
For some people, being interviewed and watched can feel uncomfortable. Other people
are not bothered by it. If you are ever uncomfortable, I will stop the session or the
interview. I will also try to make our time together as pleasant as possible so that you can
feel easy and open.
BENEFITS
You may receive no direct benefit while in the study. However, your participation may
benefit others with autism.
ALTERNATIVES TO PARTICIPATION
If you do not want to be in this study, you can simply say no.
CONFIDENTIALITY STATEMENT
All the information I will gather about you will be private. I will not use your real name
in the study. I will also not use any other information that could help anyone identify
you, like your friends' names or your job. All the recordings and notes I make will kept
in a locked file cabinet. The only people who will see this information will be me and my
study advisor. You can see any recordings we make, provided you ask me first. The
study may be printed in a scientific journal and may be presented at a scientific meeting.
Under all circumstances, your identity will be kept private.
OFFER TO ANSWER QUESTIONS
If you have any questions or concerns about the study, you can call me (Nancy Bagatell)
at (310) 446-4430 or (323) 442-2520. If you have any questions about your rights while
you take part in this study, you may get in touch with the Institutional Review Board
Office at (323) 223-2340, which reviews all research at the University of Southern
California. You can keep a copy of this form.
VOLUNTARY PARTICIPATION AND WITHDRAWAL STATEMENT
You do not have to be in this study if you do not want to. If you decide not to, it will not
affect your right to health care or other services to which you are entitled. The final
decision to enter this study is yours. If you do decide to participate, you can withdraw
your consent and leave the study at any time.
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INJURY STATEMENT
It is not likely that taking part in this study will injure you. However, if you are injured as
a direct result of taking part in the study, you will be responsible for the financial portion
of such care.
CALIFORNIA LAW REQUIRES THAT YOU MUST BE INFORMED ABOUT:
1. The nature and purpose of the study.
2. The procedures in the study and any drug or device to be used.
3. Discomforts and risks to be expected from the study.
4. Benefits to be expected from the study.
5. Alternative procedures, drugs of devices that might be helpful and their risks and
benefits.
6. Availability of medical treatment should complications occur.
7. The opportunity to ask questions about the study or procedure.
8. The opportunity to withdraw at any time without affecting your future care at this
institution.
9. A copy of the written consent form for the study.
10. The opportunity to consent freely to the study without the use of coercion.
11. Statement regarding liability for research-related injury, if applicable.
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AGREEMENT:
I have read (or someone has read to me) the information provided above. I have been
given the chance to ask questions, and all of my questions have been answered to my
satisfaction. I am signing below to show that I have decided to take part in the study and
have read the information provided above.
Name of Subject Signature Date Signed
I have personally explained the research to the subject and answered all questions. I
believe that he/she understands the information described in this informed consent and
freely consents to participate.
Name of Subject Signature Date Signed
Person Obtaining Informed Consent
216
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Asset Metadata
Creator
Bagatell, Nancy
(author)
Core Title
Constructing identities in social worlds: Stories of four adults with autism
School
Graduate School
Degree
Doctor of Philosophy
Degree Program
Occupational Science
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
health sciences, rehabilitation and therapy,OAI-PMH Harvest,psychology, behavioral,psychology, cognitive
Language
English
Contributor
Digitized by ProQuest
(provenance)
Advisor
Mattingly, Cheryl (
committee chair
), Lawlor, Mary (
committee member
), Neville-Jan, Ann (
committee member
), Polkinghorne, Donald (
committee member
)
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-c16-627897
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3116662.pdf
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627897
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Bagatell, Nancy
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texts
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(contributing entity),
University of Southern California Dissertations and Theses
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Tags
health sciences, rehabilitation and therapy
psychology, behavioral
psychology, cognitive