1. Journal of the Society for
Psychological Anthropology
CURE TO COMMUNITY 33
From Cure to Community: Transforming
Notions of Autism
Nancy Bagatell
Abstract For many decades, autism has been viewed as a biomedical condition, highlighting deficits in social
interaction and communication. Based on ethnographic data from a study of adults with High Functioning Autism,
this article explores the emergence of the autistic community, a group composed of people with autism, who are
challenging these notions. First, I suggest that three historical trends can be linked to the emergence of this com-
munity: the widening of the autism spectrum, the strengthening of the self-advocacy movement, and the explosion
of technology. Drawing from ethnographic data, I describe the community, including its discourse, occupations or
activities, and lexicon. Although the autistic community has grown over the past decade, it has also faced resis-
tance from both inside and outside the group. I investigate this tension, arising in a debate regarding whether
autism is a condition in need of a cure or a way of life and suggest that the autistic community has the power to
transform notions of autism. Implications of this research for psychological anthropology’s notions of sociality are
introduced. [autism, community, social model of disability, occupation]
Over the past 60 years the phenomenon of autism has undergone numerous transforma-
tions: from a curious but obscure psychiatric condition to a widely known public health
concern receiving much attention in the popular media; from a condition caused by
‘‘refrigerator mothers’’ (Bettleheim 1967) to a neurobiological disorder (e.g., Akshoomoff
et al. 2002; Bauman and Kemper 2005; Rimland 1964). These notions of autism have been
shaped largely by the biomedical community that views disability as a deficit and people
with disabilities as individuals who need to be ‘‘fixed’’ (Rioux 1994). Alternative notions of
disability, however, suggest that disability does not reside in the individual but, rather,
disability is socially constructed (McDermott and Varenne 1995; Oliver 1996). It is in the
sociocultural environment that fails to support difference and generates intolerance for
diversity that disability is constructed. Although most interpretations of autism remain
firmly grounded in the biomedical paradigm, individuals with autism, through narrative
self-representations and organized activities, are themselves attempting to transform how
autism is considered.
The purpose of this article is to explore how individuals with autism are challenging the
widely accepted biomedical views of autism and forging an autistic community. Here, I
purposefully use the terms autistic and autistic community instead of person-first language
(i.e., person with autism). This is the preferred language of the members. Data are drawn
from an ethnographic study that focused on five adults with High Functioning Autism
(HFA) and their constructions of identity (Bagatell 2003).1
ETHOS, Vol. 38, Issue 1, pp. 33–55, ISSN 0091-2131 online ISSN 1548-1352. & 2010 by the American Anthropological
Association. All rights reserved. DOI: 10.1111/j.1548-1352.2009.01080.x.

2. 34 ETHOS
As part of the study I spent many hours as a participant-observer at a group run for and by
adults with autism, which I have given the pseudonym Autistic Adults Coming Together
(AACT).2 AACTwas founded in the early 1990s by a small group of adults with autism who
felt the need for a communityFa place where people with autism could gather, socialize,
and find support. For well over a decade, meetings have taken place on a monthly basis in
various locations around a large, West-Coast metropolitan city, often at members’ homes.
Approximately 15 to 30 people attend these meetings. AACT is run by and for adults with
autism. It is loosely associated with a large parent-run autism organization that provides fi-
nancial support for mailings and space for meetings. Most of the people who attend AACT
have a diagnosis of Autistic Disorder or Asperger’s Disorder (AD). There are people who
attend who have never received a diagnosis but, nevertheless, feel a sense of kinship. Occa-
sionally, spouses, significant others, family members, and outside supportersFfor example,
group home staffFaccompany people to the meetings. AACT members vary in age, gender,
race, ethnicity, social experience, education level, and functioning level. However, during the
time I attended AACT, a large percentage of the members were from white, middle- and
upper-class, and well-educated families, and were considered to have either HFA or AD.
I spoke informally with many members of AACT during meetings over a period of six
months. I also engaged in extensive narrative interviews and participant-observation
exploring various aspects of their lives with five AACT members, some who were key
members of the group and others whose participation was limited. The five ranged in age
from 21 to 58. All were considered high functioning in that they were able to communicate
verbally relatively easily and lived independently. As advised by members of AACT, I also
spent countless hours on the Internet reading blogs and visiting virtual Internet communi-
ties, which have proliferated over the past decade. These readily available materials became
a rich and important source of data.
In this article I use the information gathered from AACT meetings and members and
Internet sources to inform my description of the autistic community.
I first explore historical trends linked to the emergence of the autistic community. Next, I
discuss the practices, or everyday occupations,3 discourses, and artifacts unique to this
community. Finally, I delve into the tensions and challenges that this community faces as it
attempts to redefine autism. I suggest that as the rates of autism soar,4 autistic people
themselves have the potential to have a powerful voice in how society conceives of what
autism is and what it means to live with autism.
Historical Trends Influencing the Emergence of an Autism Community
How is it possible that an autistic community has emerged? Given that, from a biomedical
perspective, autism is characterized by significant social and communication deficits and
repetitive and stereotyped behaviors, restricted interests and activities (American Psychiatric
Association [APA] 1994), people with autism would seem to lack the skills essential for the
establishment and maintenance of a community. The emergence of the autistic community

3. CURE TO COMMUNITY 35
can be linked to three historical trends: (1) the broadening of the autism spectrum to include
HFA and AD; (2) the emergence of the disability rights movement and, specifically, the self-
advocacy movement; and (3) the explosion of computer technology, specifically the Internet.
The Broadening Spectrum
Autism spectrum disorders (ASD), also known as Pervasive Developmental Disorders,
include Autistic Disorder, AD, and Pervasive Developmental Disorder Not Otherwise
Specified (PDDNOS).5 As the name suggests, individuals who receive a diagnosis of ASD
have a range of symptoms from mild to severe. Even within the diagnosis of autism indi-
viduals may be described as high functioning or low functioning, although as Grinker points
out, ‘‘the autism spectrum offers no obvious borders between different kinds of people
with autism’’ (2007:61). The notion of HFA and the diagnosis of AD are relatively recent
phenomenon in the United States. HFA is used to describe individuals with average to above
average intelligence, highly developed language skills, but significant social and
behavioral concerns. Thus, individuals with HFA and AD are able, to some extent, to give
voice to their experience. HFA was not expressly referred to in the literature until DeMeyer
used the term in 1981 (Gillberg 1998). During the same period, Wing (1981)
rediscovered the writings of Hans Asperger, an Austrian physician, whose work had been
virtually ignored. Asperger had described a group of young boys who had normal intelli-
gence and language development, but who had marked deficiencies in social and
communication skills. AD was used as a diagnostic category in Europe throughout the
1980s but was not adopted in the United States until the early 1990s, when it was included in
the Diagnostic and Statistical Manual for the first time (APA 1994). Prior to the 1980s,
people now labeled high functioning often went undiagnosed, were given other labels,6 or
were merely considered ‘‘odd.’’ It is still quite common for AD to go undiagnosed until
adolescence or adulthood when social deficits often become more pronounced and when
social success becomes paramount (Tantum 1991).
Many of the adults who attended AACT were, in fact, diagnosed with other disorders or
went undiagnosed for much of their youth. Harold, the facilitator for AACT and a key
informant in my study, was born in 1942, the year before Leo Kanner (1943) coined the term
autism. Early on, Harold’s mother identified something ‘‘different’’ about her middle son
and it became her quest to find out what was wrong. She took him to various specialists
around the country. Over the years Harold received many different diagnoses, including
minimal brain dysfunction and mental retardation. Most of the specialists counseled his
mother to place him in an institution, advice his mother ignored. Harold’s family had the
resources to send him to private schools and continued to seek advice from professionals.
However, Harold resisted intervention. It was not until Harold was in his 40s, had earned
multiple college degrees, but struggled to maintain employment and relationships, that he
sought out and received a diagnosis of autism. Having the diagnosis in hand was actually a
relief. The label enabled Harold to better understand himself, gain insight into his strengths
and challenges, and perhaps most importantly, locate others like himself.

4. 36 ETHOS
The Advent of the Self-Advocacy Movement
The widening of the spectrum meant that autistic people, fueled by the self-advocacy
movement, were able to communicate and give voice to their experience. The self-advocacy
movement is reported to have its beginnings in Sweden in the 1960s (Ward and Meyer
1999). Individuals labeled with mental retardation began making their own decisions,
speaking for themselves, and taking control over their lives. The idea of self-advocacy
eventually spread to the United States in the 1970s. Fueled by the success of the civil rights
movement and the disability rights movement, the self-advocacy movement became a
significant force. According to Shapiro (1993), the self-advocacy movement ‘‘is the parallel
cry for 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’’ (1993:185). People First, the first self-advocacy group in the United States, began in
1974. It was comprised of individuals with a variety of developmental disabilities, including
autism. Since then, the self-advocacy movement has grown rapidly. In 1974, there were 14
self-advocacy groups in the United States. By 1994, 505 self-advocacy groups were identi-
fied (Ward and Meyer 1999) and over the past decade, there has been a proliferation of these
organizations. Currently, these groups address individual and group advocacy and provide a
forum for social and recreational activities.
Self-advocacy for individuals with autism began slowly. In the early 1990s, adults with
autism turned to autism organizations headed by parents of children with autism and began
attending conferences for parents and professionals (Sinclair 2005; Ward and Meyer 1999).
However, finding their needs unmet at these meetings, a small group of autistic adults
decided to start their own organization, Autism Network International (ANI), reportedly
the first organization run for and by individuals with autism (Sinclair 2005). Since that time,
many similar organizations have formed around the world, including AACT. One of the
more active and visible groups in the United States that focuses specifically on advocacy
is the Autistic Self Advocacy Network (ASAN) that describes itself as ‘‘committed to ad-
vancing self-advocacy, self-determination, self-awareness and independent living
throughout all aspects of society’’ (ASAN 2007). Members of ASAN have testified in state
legislatures advocating for and against legislation involving provision of services for people
with autism and are frequently quoted in the public media on issues related to autism.
Technology and the Internet Explosion
The emergence of organizations such as ANI coincided with the widespread adoption of
personal computers and the availability of the Internet. Like many other disability groups,
the use of computers has opened up lines of communication for people with autism. As
Singer (1999:67) suggests, the Internet has done ‘‘what was thought impossibleFto bind
autistics together into groups, and it is this which will finally enable them to claim a voice in
society.’’ The Internet has, in many ways, become an important tool of identity. Freed from
the constraints of typical ways of perceiving and interacting, individuals with autism meet
each other, share stories, and provide support. As Blume (1997a:6) so eloquently noted, ‘‘In

5. CURE TO COMMUNITY 37
cyberspace, many of the nation’s autistics are doing the very thing the syndrome supposedly
deters them from doingFcommunicating.’’
Many individuals with autism with whom I spoke were more comfortable communicating in
writing than orally. The asynchronous, non face-to-face nature of online communication pro-
vides time to process and develop responses. As Ben, an AACT member with AD noted, ‘‘I just
feel more free writing. It’s like I can look at the keyboard and the words just come together. I
don’t get the same word freeze that I do when I’m talking. And if I do, well, timing doesn’t
matter so much.’’ This alternative mode of communication was liberating for many of the
people with whom I spoke. As Ben, who almost always had his laptop handy, noted, ‘‘The
computer is kind of like what sign language is for the Deaf. It’s the autistic way of communi-
cating.’’ Indeed the computer, like American Sign Language, offers a language that is visually
received. Blume (1997b), in his essay ‘‘Autism and The Internet or It’s The Wiring, Stupid,’’
likens the Internet to another nonauditory form of communication, Braille.
Interestingly, for Ben, his laptop also served as a mediator in everyday conversation. During
interviews, Ben felt more comfortable conversing about important matters when facing the
computer screen instead of me. In fact, our most meaningful interviews occurred while Ben
was surfing the Web. For example, during our first interview Ben, who suffered from
depression,7 was quite withdrawn. After an uncomfortable 30 minutes stumbling through
the interview, I suggested that we end for the day. However, Ben said that he wanted to
continue and recommended that we go to another room so that he could show me some of
the autism websites that he enjoyed. Once Ben was on the computer and moving from
website to website, he shared with me the rather dramatic story of a recent suicide attempt
and his subsequent hospitalization. The computer served as a buffer between us allowing
Ben to communicate about meaningful life events without, as Kenway (2009:100) suggests,
‘‘the physical burden of sharing emotion.’’ Without the laptop as a mediator, Ben may not
have shared this powerful narrative.
The Internet has also enabled individuals with autism to locate others with autism, often
for the very first time. Many of the AACT members, particularly those who did not
receive special education services, told me stories of growing up thinking they were the
only ones who did not ‘‘fit in.’’ As Ben told me, ‘‘On the Internet I found people like me.
I learned that I wasn’t weird and that I didn’t have to pretend to be normal. Um, like I could
be myself. And it was cool to hear other people’s stories and just say what I wanted to.’’
Clearly, the Internet has given autistic people a voice. As one AACT member declared,
‘‘We now have a way to say what we want. It’s not possible for others to speak for us all of
the time.’’
The Autistic Community: Occupations, Discourses, and Artifacts
With more people able to give voice to their experience and able to locate others like
themselves, an autistic community has, over the past two decades, emerged. A community,

6. 38 ETHOS
in this sense, is not a place but, rather, more like the notion of a ‘‘figured-world’’ introduced
by Holland and colleagues (1998). Skinner et al. (2001:para 11) define figured worlds as
‘‘historical and social phenomenon into which individuals enter or are recruited and which
are reproduced and developed by and through the practices of their participants.’’ In a fig-
ured world, discourses, activities, and artifacts, which are coproduced, come to have unique
meanings.
The discourse of the autistic community provides an interpretation of what autism is that is in
most ways a direct contrast to the biomedical interpretation. Autism is seen as a neurological
‘‘difference,’’ not a disease or illness. Key are the concepts of ‘‘tolerance’’ and ‘‘neurodiversity,’’
a term used to suggest that differences in neurological development should be accepted and
respected. Behaviors, such as repetitive movements and lack of eye contact, which are con-
sidered problematic in the biomedical paradigm, need to be understood as a difference, and
not considered a behavior that needs to be changed. In this discourse, people with autism are
considered worthy individuals in and of themselves, not people who need to be cured, altered,
or isolated from the world. Autism is seen as a fundamental part of who they are, not just
something that they have; that is, if their autism were eliminated, they would not be the same
person. The symptoms of autism as described by professionals, for example, unusual and re-
stricted interests, are not seen as problematic, but, rather, as something to be valued. Instead of
a cure, the autistic community advocates identifying coping strategies for symptoms members
find problematic and locating particular niches for their unique perceptions and skills. Ac-
cording to ANI, ‘‘autistic people have characteristic styles of relating to others, which should
be respected and appreciated rather than modified to make them ‘fit in’’’ (2000). In essence,
the discourse suggests that autism, like other disabilities, is socially constructed. The ‘‘prob-
lem’’ is not the person with autism, but societal attitudes.
Being exposed to the discourse of the autism community is often a very powerful experience
for individuals who have felt oppressed by the biomedical discourse of autism. For
Ben, who, although intellectually gifted, was struggling in college and experienced serious
depression, hearing and embodying the autistic community’s discourse enabled him to
reframe who he was and to construct a positive identity as a person with autism. As Ben stated:
It’s like coming home . . . I’ve finally found a place where people don’t care what you do.
As far as nobody thinking you’re weird or anything like that. . . . It’s just ‘be yourself’ . . .
It’s like finding a world where you fit, where I’m not like an alien or something . . . I can
get off the cure mentality. It’s okay to be me. [interview, July 8, 2002]
Ben did, however, wish to learn how to cope more effectively with what he experienced as
his more problematic symptomsFhis sensory processing differences.8 As Ben noted
one day, ‘‘You know, I don’t want to change what I think are fundamental parts of me . . . But
I sure would like to figure out ways to get my sensory stuff under control so that I’m not so
anxious.’’
Another critical aspect of the autistic community is a coproduction of specific activities and
ways of doing things. As Dewey (1916:24) asserted, people must be interested ‘‘in entering

7. CURE TO COMMUNITY 39
into the activities of others and taking part in conjoint and cooperative doings.’’ In the autistic
community, activities are not constrained by the conventions of the discourse of normalcy.
Community activities and conversations often take place around common interests, such as
politics and sports, but also frequently around interests considered ‘‘unusual.’’ At one AACT
meeting, two young men engaged in a lengthy discussion about cars and more specifically,
windshield wipers. In addition, actions viewed as ‘‘self-stimulatory’’ by the biomedical com-
munity, such as rocking and hand flapping, are reframed as a valued activity not a meaningless
action that should be ‘‘extinguished.’’ Many members told me that they enjoyed these activi-
ties tremendously and felt a sense of relief being in a place where they could, in fact, be
themselves. 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 talked about or their actions.
One of the biggest surprises for me was discovering the highly social nature of AACT.
However, socializing at AACT meetings involved practices that I did not originally perceive
as social, practices described by Sinclair (2005) as ‘‘autistic socializing.’’ This socializing did
not usually occur in the conventional way, with eye contact, small talk, and back and forth
dialogue. 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 ‘I’m fine?’’’ one member asked me
one day as I inadvertently began a conversation with conventional small talk. As in any
group, conversations at AACT sometimes appeared to be monologues while at other times
conversations were dialogic and animated, sometimes even heated. Individuals at AACT
often used humor and seemed to enjoy the verbal exchanges of jokes, riddles and puns,
many of which I did not understand. Humor was often shared through media. For example,
during a meeting a group of people gathered together and watched an episode of ‘‘The
Three Stooges,’’ clearly enjoying the slapstick humor.
Online chat groups and other Internet forums offer additional means of socializing,
again free from the constraints of social conventions. Ana, a young woman who was a
part of many Internet groups, found a striking difference between autistic-run groups and
more mainstream groups. She stated, ‘‘On autistic sites, I can ramble on about my interests
and no one thinks it’s weird. On other sites with people who aren’t autistic, people get
impatient with me. Once someone asked me to stop posting my thoughts, that they’d
had enough of me.’’ The freedom to communicate naturally was tremendously liberating
for Ana.
Autistic socializing did not necessarily require conversation. I observed what Sinclair
(2005:4) describes as ‘‘interactive stimming,’’ ‘‘a kind of spontaneous sharing of pleasure in
fixations and stimming.’’ ‘‘Stimming,’’ short for self-stimulation, is a form of stereotypy.
This includes hand flapping and body spinning or rocking. From the biomedical
perspective, ‘‘stimming’’ is undesirable (Harris and Wolchik 1979; Smith et al. 2005).
At one meeting, I observed two men sitting near each other. One man was tapping his fin-
gers in a rhythmic pattern while the other man rocked back and forth in time. At first

8. 40 ETHOS
glance, these motions appeared disconnected but after a few minutes, I noticed how syn-
chronized and almost balletic their motions were. I also observed that socializing involved
merely being in proximity to others. At one meeting, I watched Ellen, an AACT regular, 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 in her characteristic
matter-of-fact way, ‘‘socializing with others.’’ I must have looked confused because she im-
mediately offered an explanation: ‘‘We don’t have to talk. We can just share energy to be
social.’’
As Hannerz noted the autistic community has also developed ‘‘tools of identity’’ (Holland
et al. 1998). Perhaps most immediately evident to me was the lexicon of types, the words
used to not only identify themselves but others. Thus, people identified themselves as
‘‘Aspies,’’ ‘‘auties,’’ and autistic cousins, those with a related diagnosis or ‘‘autistic-like’’
(Sinclair 2005). Many members identified themselves as ‘‘autistic’’ and preferred not to use
person-first language. As Sinclair writes:
Saying ‘‘person with autism’’ suggests that autism is something badFso bad that it isn’t
even consistent with being a person. Nobody objects to using adjectives to refer to
characteristics of a person that are considered positive or neutral. We talk about left-
handed people, not ‘‘people with left-handedness,’’ and about athletic or musical people,
not about ‘‘people with athleticism’’ or ‘‘people with musicality.’’ We might call some-
one a ‘‘blue-eyed person’’ or a ‘‘person with blue eyes,’’ and nobody objects to either
descriptor. It is only when someone has decided that the characteristic being referred to
is negative that suddenly people want to separate it from the person. [1999]
Others in the community, however, did not particularly care about the distinction. In a
conversation with Harold, he stated, ‘‘You know, I have too many other things to worry
about than to care what other people call me.’’
Community members have also created a word for people without autism, or perhaps more
precisely, people whose neurological systems are not impaired: neurotypical. This term is
sometimes used sarcastically as on a web site featuring a spoof of a Diagnostic and Statistical
Manual of Mental Disorders (APA 1994) entry, ‘‘Neurotypical Syndrome,’’ ‘‘a neurobiological
disorder characterized by preoccupation with social concerns, delusions of superiority, and
obsession with conformity’’ (ISNT.autistics.org). I quickly learned the term was generally
not used affectionately. In some respects, neurotypicals (NTs) were viewed as oppressors
and promoters of the biomedical interpretation of autism. During discussions, AACT
members often shared stories about the insensitive ways NTs treated them. For many
members of AACT, the behavior of NTs was often puzzling. At one meeting, Penny, a
regular at AACT meetings, shared a story with the group. Penny had attended a national
autism conference in San Diego and there she met many people, both autistics and NTs,
with whom she took a trip across the border to Mexico to do some shopping. In a field note
I describe what happened next:
Penny explained that this ‘‘frat guy’’ (she said, you know the typeFloafers and Izod
shirt), who apparently was the father of a child with autism, went on the outing. He

9. CURE TO COMMUNITY 41
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 offended by the comment. She kept saying, ‘‘why would he say that? I
can never understand neurotypicals!’’ [field note, June 18, 2002]
In addition to this lexicon, the autistic community also coproduces artifacts that are inti-
mately tied to practices or occupations. Many of the AACT members wore T-shirts with
slogans such as ‘‘Respect Autistics Now,’’ and ‘‘Eye Contact is Overrated.’’ Additionally,
many AACT members spent considerable time engaged in ‘‘autistic art,’’ drawing, painting,
writing music and stories to express and convey experiences of autism. Ana, for example,
spent many hours each day writing and drawing pictures to convey and make sense of her
personal experiences as a child with autism. One drawing represented her recollection of her
speech therapistFa cup of coffee with a cartoon bubble containing the words, ‘‘blah, blah.’’
As a child overwhelmed by sensation, Ana could only focus on the coffee smell on the ther-
apist’s breath, making it impossible for her to attend to the reiterated requests to repeat
words. Ana’s other paintings had titles such as ‘‘Confusion,’’ and ‘‘Out of Touch,’’ expressing
how she felt trying to navigate through everyday life. As Ana began to see others in the
autistic community publish and display their art, she began to see her art in a new light and
began entering her paintings in art shows and posting her writings on websites. Inspired by
others, Anna also hoped to one day publish her autobiography.
Like most communities, the autistic community has attempted to establish rituals and
events. In 2005, the group ‘‘Aspies for Freedom,’’ began celebrating Autistic Pride Day.
Intended to highlight neurodiversity, this event has included internationally organized
activities but has yet to attract much media attention. Another important event that has
developed is Autreat, a retreat-style conference run for and by people with autism, which
takes pace annually in the United States. This conference focuses on ‘‘positive living with
autism, NOT on causes, cures or ways to make us more normal’’ (www.ani.autistics.org).
Many of the unique practices of people with autism, particularly sensory practices, are
considered in the organizing of the conference. For example, noisy environments with
bright lights are avoided and opportunities for sensory breaks are provided. As Mike, an
AACT member who attended Autreat stated, ‘‘For the first timeFat a conferenceFI wasn’t
bombarded with florescent lights and noisy rooms and so much information. And if I needed
to do my stimming or didn’t want to talk to anyone, you know, it was okay. You know, I could
hang out. And, and I liked it.’’ Autreat has been so successful that there are now other similar
conferences as well as online conference forums being piloted.
Resistance and Conflict
Although the autistic community has grown over the past decade, it has also faced numerous
challenges. As many other self-advocacy and disability communities have experienced,9 the
autistic community faces resistance and dissent internally and from outside, that is, from

10. 42 ETHOS
parents of children with autism, clinicians, and scientists. The friction has centered largely
on how autism is thought ofFis it a biomedical condition or a way of life?
One of the challenges from within the autistic community centers on the role of nonautistic
people, or neurotypicals (NT), and with the rapidly growing number of autism organiza-
tions run by NTs that support the biomedical perspective. The autistic community has
fully embraced the notion of ‘‘Nothing about us without us.’’ This popular slogan of the
Disability Rights Movement suggests that people with disabilities should determine policies
that affect their lives and that ‘‘when others speak for you, you lose’’ (Dreidger 1989:28).
Over the years, many in the community have grown to distrust NTs who, as one AACT
member stated, ‘‘claim to represent our needs but don’t really listen.’’ A few AACT members
told stories about being excluded from autism organizations run by NTs because of their
desire to advocate for themselves. Members express wariness regarding autistics placed on
these organization’s boards as ‘‘tokens’’ or being used as ‘‘poster children, like Jerry Lewis
and the March of Dimes.’’ In an online posting, members of the autistic community wrote,
‘‘Being submissive to the wishes of mainstream non-autistic parents gets us praised for our
insight. When we stray from these wishes, and stand up for our own worth, that is when
the very same people get told that we lack insight, compassion, empathy, and the ability to
recognize suffering’’ (Autism Information Library 2004).
As early as 1994, as the ANI emerged online, there have been conflicts between NTs and
members of the autistic community. Strong opinions have been voiced regarding whether
NT parents and professionals should be allowed to join online chat groups. Some members
felt that the presence of NTs stifled their communication. Others voiced the need for a space
to engage in uncensored, spontaneous conversation, what Sinclair (2005) describes as
‘‘sometimes meandering, sometimes perseverative, sometimes just plain weird autistic con-
versations.’’ Early on, the community experienced what they perceived as online attacks.
Sinclair writes:
A series of flame wars occurred . . . Any time autistic people became particularly active
on the forum, or affirmed the sentiment that autism is something other than a devas-
tating tragedy, there would be accusations and attacks from parents. This left most of
the autistic members feeling that the forum was now a hostile place for us. [2005]
More recently, ANI, like other online groups has established policies to eliminate
unnecessary conflict. Rather than banning NTs from participating, most groups ask
that all members avoid inflammatory postings. Many groups have separate forums
set up so that varying needs can be met, including a ‘‘sanctuary’’ where no criticism is
allowed.
Certainly, the community has not found all interactions with NTs to be adversarial.
Many members of AACT identified NTs who were supporters of the autistic commu-
nity. Some organizations founded by NTs are considered ‘‘autistic-friendly.’’ The
Autism National Committee, for example, is dedicated to ‘‘Social Justice for All

11. CURE TO COMMUNITY 43
Citizens with Autism’’ through a shared vision and a commitment to positive ap-
proaches (Autism National Committee 2007). Other supporters have been parents
of children with autism. One parent, Morton Ann Gernsbacher, expressed her views in an
online essay:
I’m a middle-aged psychology professor who holds an endowed chair at a major
research university. But my son has taught me far more than I ever learned in my
lab. Every time he walks by a poster avowing that autism must be eradicated, he
teaches me grace. Every time he ignores one of the countless scholarly articles that
tower above my desk, asserting he is disordered, he teaches me tolerance. Every time he
embraces a world that so frequently rebuffs him, he teaches me unconditional love.
[2004]
At AACT, there were a variety of opinions about if and how NTs should interface with the
autism community, as I witnessed as I attended monthly meetings. The issue came to a head
at one meeting when Harold, the group’s facilitator, suggested that a psychologist be invited
to the group to serve as a mentor and to provide educational and training opportunities
in areas such as relationships and securing and maintaining employment, both common
concerns expressed by members. This proposal took many people by surprise. After a
moment of silence, Shelly, a middle-aged woman who participated actively at meetings said,
‘‘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 neurotypical to help run it? They’ll probably just come in a mess it
up.’’ Murmuring could be heard from the back of the room, and one member spoke up, ‘‘We
like AACT the way it is. We don’t want a group run by neurotypicals. There are already
enough of them. If someone wants job skills or social skills, they can get that elsewhere.’’
Dejectedly, Harold explained that he felt that the group was not ‘‘organized or efficient.’’ He
said, ‘‘I just can’t do everything. No one helps me. I am just trying to help everyone.’’ There
was a lot of rustling in the room and more muttering. The discussion ended when one
member stated emphatically, ‘‘Well, when the group was started it was for support and
advocacy, not to try to teach us or change us. We don’t need anyone’s help.’’ The tension in
the room was palpable. The meeting ended without any resolution.
This discussion highlighted my own discomfort attending AACT. What was my role as a
nondisabled, neurotypical researcher? My misgivings are echoed by Oliver:
As disabled people have increasingly analyzed their segregation, inequality and poverty
in terms of discrimination and oppression, research has been seen as part of the problem
rather than part of the solution . . . Disabled people have come to see research as a vio-
lation of their experience, as irrelevant to their needs and as a failing to improve their
material circumstances and quality of life. [1992:105]
One of my concerns was whether members would feel self-conscious or judged or if they
would censor what they said or did in my presence. I was aware that some members might
see me as an authority, raising issues of the powerful ‘‘expert’’ and the powerless ‘‘subject’’
(Oliver 1992; Rioux and Bach 1994; Stone and Priestley 1996) and that they might feel like

12. 44 ETHOS
‘‘passive research subjects’’ (Abberley 1987:141). I had summarized my research to the
group’s facilitator prior to the first meeting, explaining my desire to better understand
disabling barriers. Although I was somewhat apprehensive approaching the group, at the
first meeting, most of the members were welcoming and interested in what I was proposing.
They seemed particularly interested in my desire to hear their narratives. Many of the
participants mentioned to me that no one, including professionals and researchers, had ever
asked to hear their stories but were more concerned with uncovering deficits. I left that
meeting feeling more comfortable with my role. However, the next day, Harold told me that
one member, Laura, who I was told was an ‘‘autistic cousin’’ (her husband identified himself
as being autistic), did not feel comfortable having me taking notes at the meetings. I
continued to attend meetings, taking notes during breaks and after the meeting, and with
permission, audio taped on occasion.
After the meeting where the suggestion to invite a psychologist caused such dissent, I asked
Harold if he felt I should continue to attend. Harold, who had by then become a main
informant in my study, assured me that it was fine. With some misgivings, I went to the
meeting the following month. I chatted with a few members. However, when Laura arrived,
she did not smile or greet me in any way, and I sensed that she was upset. She left the room
quickly. Minutes later, Harold came in and said, ‘‘Someone wants to talk to you.’’ I found
Laura in the waiting area and I sat down next to her. Laura quickly expressed that she was
not comfortable with me being there and that she not only represented herself but other
members. She verbalized that members felt ill at ease and judged, and that because I did not
have autism and was not related to anyone attending the group, that I had no reason or
right to attend meetings. Although stunned by her vehemence, I was not surprised by her
message. Although some other AACT members tried to convince me to stay, I left the
meeting shaken but with a new understanding of the depth of feelings some members of the
community have toward NTs. As a result, I decided to discontinue attending AACT but
maintained contact with a few members.
A second major area of tension revolves around representations of autism and the corre-
sponding issue of a cure. The autistic community’s discourse, as I discussed earlier, is
fundamentally ‘‘anti-cure.’’ Autism is viewed as a difference, a neurological variation, a
fundamental part of the person, not a disease in need of a cure. An autistic life, although it
may entail struggles, can be a fulfilling and meaningful one.
From a biomedical perspective, autism is seen as a disability or a disease. Autistic people are
seen as having impairments that prevent them from participating ‘‘normally’’ in society,
from leading happy and productive lives. Thus, biomedical goals include early detection,
prevention, and improved treatmentsFand ultimately a cure for autism. From this
perspective, autism is seen as a tragedy, a mystery, or a puzzle needing to be solved. In fact,
one of the most common representations used by autism organizations that embrace the
biomedical perspective is a jigsaw puzzleFwith a piece missing. More disturbing to
the autistic community are the somewhat violent representations of autism as a condition to
be ‘‘battled,’’ one that has taken children ‘‘hostage.’’

13. CURE TO COMMUNITY 45
A public awareness campaign launched by the New York University Child Study Center in
2007 illustrates this issue of representation. The campaign was aimed at bringing attention
to the growing rates of psychiatric conditions in children, including ASD. It involved a plan
to post ‘‘ransom notes’’ on billboards, in magazine ads, and online. The following is an
example: We have your son. We will make sure that he is not able to care for himself or
interact socially as long as he lives. This is only the beginning. . . . Autism (Kaufman 2007).
The campaign caused outrage in the autistic community. As Ne’eman, the president of the
ASAN wrote in a memo to its members, ‘‘This highly offensive ad campaign . . . relies on
some of the oldest and most offensive disability stereotypes to frighten parents’’ (2007).
Joining forces with disability rights organizations and others concerned about the stigma-
tizing nature of the campaign, a letter-writing drive was organized, petitions were cir-
culated, and the media reported on this activity. Eventually the campaign was discontinued
and NYU apologized (Kaufman 2007).
Although many NT parents of children with autism were upset by these and other negative
representations, they maintain a desire for a cure for autism. These parents see autism as a
condition that prevents their child from living a happy and productive life, and causes their
child to suffer physically and emotionally. Autism is seen to mask the ‘‘real child,’’ rather
than constituting an essential part of who the child is. In addition, parents voice that autism
places great burdens on familiesFfinancial strains, disruptions of daily routines, and stress
on siblings (e.g., DeGrace 2004; Schall 2000). Although many acknowledge their love and
the joy that their child brings, parents have also described feeling ‘‘robbed’’ and that autism
is a ‘‘nightmare’’ (DeGrace 2004). As a result, organizations comprised of parents, clinicians,
scientists, and governmental agencies, such as the National Institute for Child Health and
Human Development (NICHD), have prioritized the funding of research aimed at early
detection, prevention, and treatment and cure of autism.10 Organizations such as Cure
Autism Now and Defeat Autism Now, as their names suggest, underscore this ‘‘cure per-
spective.’’ Autism Speaks, which merged with Cure Autism Now and other organizations
to become the largest nonprofit autism-related organization, states that it aims to make
‘‘autism a word for the history books’’ and to create a world where ‘‘no family has to live with
autism’’ (Autism Speaks 2007).
On online forums and in other venues, the autistic community, NT parents, and scientists
have engaged in heated and, at times, hostile discussions around the issue of a cure. The
arguments seem to pivot on two questions: what is best for people with autism and who
‘‘speaks’’ for autism. Many parents feel that the voices of the autistic community represent
only a small portion of the autism spectrum, people with HFA and AD. The experiences and
needs of these individuals are very different from those who are considered low functioning.
As one parent expressed:
The ‘‘differing abilities’’ of persons with Asperger Syndrome are nothing like my
daughter’s autism. When we at Autism Speaks use the word cure, we are most often
focused on the people at the lower end of the spectrum. I have not met a person with
Asperger Syndrome who seemed anything like my daughter . . . It is hard to consider her
‘‘differently abled’’ because she is not ‘‘abled.’’ She is sweet and loving and works harder

14. 46 ETHOS
than anyone I know, but she does not have any areas of strengths that I fear squashing
through medication, intervention or cure. Without her medication, she cried almost
constantly during the day and can’t sleep at night. She has frequent seizures. She cannot
tell me when she is in pain, or where it hurts . . . Her pain is heartbreaking and I pray
every day for a cure. I do not use the word cure to insult other people on the spectrum. I
use it because it accurately conveys my hope that one day, her constant struggles will end
and she will know a different, pain-free life. [Singer n.d.]
The editor of the Shafer Autism Report, an online autism publication aimed at ‘‘healing
autism,’’ has also voiced concern about opponents of a cure. In an editorial responding to
a New York Times article on autism advocacy (Harmon 2004), he suggested that autistic ad-
vocates could not be autistic: ‘‘If one can typically speak, write, sign etc., even if they have a
number of other shared characteristics of autism, they are not autistic’’ (Shafer 2005).
The accusations that vocal members of the autistic community are, in fact, ‘‘autism
imposters,’’ or ‘‘self-proclaimed high-functioning autistics’’ (www.autistics.org) are denied
by many community members. One AACT member, told me, ‘‘Just because I’m intelligent
and can express myself doesn’t mean I’m not autistic. It’s absurd that people think that I’m
not on the spectrum. It’s like I have to rock in the corner or hit people or something. What
do I have to do, show my diagnostic report?’’ Another member, who has had people suggest
that she is not autistic said, ‘‘You know, I had classic autism as a child. And now because I talk
and express myself and they don’t want to hear it, I’m suddenly not autistic anymore.’’
In addition, not all adults with autism dismiss the concept of a cure. Some autistic adults,
particularly among those who are more impacted or lower functioning find the anti-cure
position problematic. One young man, who uses facilitated communication (FC),11 an
alternate mode of communication, expressed his experiences of living with autism: ‘‘By a
quirk of nature I was born with a cruel disability called autism . . . My life is very unfulfilling.
I am quite intelligent I think but I can’t do the slightest, simplest thing to take care of my
own body. My life is constantly controlled by those who care for me. When they can un-
derstand my needs or my wishes, I am OK. When they miss my cues or don’t FC with me, I
am sunk in frustration (Daniel Treacy n.d.). Sue Rubin, another adult with autism who uses
FC, has mixed feelings about a cure:
The rift in the autism community basically is between what we label high-functioning
and low-functioning people. High-functioning people talk and low-functioning people
don’t . . . I believe the idea that they (high-functioning people) should be cured is wrong.
They are different, but basically are just a variation on the norm and should be accepted
as such . . . As a low-functioning person who is still really awash in autism, I actually am
aligned with the cure group, although I will not personally benefit if a cure is found.
Low-functioning people are just trying to get through the day without hurting, tapping,
flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really
would be wonderful. [Rubin 2005]
Even so, the functioning level of an autistic person does not always influence their feelings
about a cure. For example, some adults considered low functioning, align themselves with

15. CURE TO COMMUNITY 47
the anticure perspective while some with HFA align themselves with the cure perspective.
One AACT member who used FC stated, ‘‘My life is hard and I’d love not to have some of
the problems that I do, but cure is the wrong word. I don’t want to be normal. I don’t hate
my life.’’ At one of the first AACT meetings I attended, four men, all considered high
functioning, engaged in a dialogue about whether or not they would take a pill to cure
autism if it was available. Three of the men, Tim, Doug, and Jason, all in their 20s, were
vehemently opposed to this notion. Aaron, a man in his early 40s, expressed a very different
sentiment. Below is an excerpt from their discussion:
Doug: I would never take a pill. You know, autism isn’t like cancer or anything.
Tim: Yeah, I’m tired of hearing about how bad autism is. Autism isn’t a disease.
Aaron: But autism sucks! It is like a disease. My life sucks!
Tim: Because of autism?
Aaron: Yeah. Everything is hardFfinding a job, finding people to do things with, even someone to have
sex with! This isn’t much of a life.
Doug: ((chuckles)) I don’t think it’s because of autism, Aaron. I’d never take a pill. So, you agree with all
of those professionals who want to cure autism?
Aaron: You bet! I mean not the ones that torture people. I mean I had my share of torture. But a pill . . .
Jason: Well, I mean if there was a pill to take away some thingsFlike my tics or something, I’d think
about it; I think you’re crazy, man. I mean, I’m PRoud to be autistic.
Aaron: ((voice getting louder)) Proud? What is there to be proud of? What have you done with your life?
You sit around and talk about how great it is to be autistic. Why don’t you DO something?
((bangs the table))
Doug: Calm down! Geez. Why would I want to be cured? What’s to cure? Autism is part of who I am.
You want to cure me of me?
Aaron: ((looking away and rocking slightly)) Autism is, well, kind of an add on, something I got because of
bad genes, I think. It’s not part of me. ((under his breath)) God, I get so sick of this talk . . .
Tim: Don’t you see anything good about autism?
Aaron: NO! I’m not goin’ waste my time talking to you guys. ((gets up and walks angrily away))
Jason: And I’m not goin’ waste my time talking to a curabie! ((The others laugh and the conversation shifts to
another topic.))12
Tim, Doug, and Jason, part of a younger generation diagnosed with ASD, had clearly
adopted the discourse of the autism community. They saw autism as a part of their identity,
not something in need of a cure. However, Aaron, a middle-aged man with a history of what
he called ‘‘behavioral problems,’’ clearly viewed autism as a genetic disease, not a part of
him. As he put it, autism was an ‘‘add on.’’ He attributed his discontent to the symptoms of
autism that prevented him from living a fulfilling life, and he yearned for a cure.
If the notion of a cure divides the parents, professionals, and the autistic community, it is not
surprising that intervention for autism is also controversial. Here the disagreement focuses

16. 48 ETHOS
on two main issues: the purpose of intervention, and the ethics of intervention. For most
members of the autistic community, the purpose of intervention is to alleviate problematic
and disruptive symptoms, as Jason noted above. Allergies, unwanted movements, gastroin-
testinal problems, and sensory sensitivities and ways of alleviating these issues are sought by
most members of the autistic community. Many members expressed desire for help coping
with these impairments and assistance with problem solving everyday life challenges. Ben,
for example, often asked me, as an occupational therapist, for suggestions to help him cope
with his intense sensory sensitivities.
Parents are interested in these types of interventions, but they also advocate for interven-
tions with an additional purposeFto help their child fit in socially. These interventions
include behavioral and social skill interventions that work toward normalizing behavior. Yet
many autistics find the purpose of these interventions is to deny the validity of the autistic
experience and to turn them into ‘‘neurotypicals.’’ Jim Sinclair in his essay ‘‘Is Cure a Goal?’’
writes:
The question of ‘‘fitting in’’ is often brought up by non-autistic people who think au-
tistic people must suffer as a result of being different, merely because they would be
unhappy if they could not fit in. One of the core features of autism could be described as
an absence of fitting-in instincts. Asking autistic people to fit in just for the sake of fitting
in is imposing an alien and incomprehensible structure on our lives.
I take the view instead that autistic people, like all people, need to be taught to behave in
such a way that they do not intrude on other people’s boundaries. If a student is dis-
playing behavior that actively interferes with other people (such as unwelcome
touching, taking things that belong to others, making noises when people are trying to
concentrate, flipping lights on and off when other people in the room find it distressing),
then it is appropriate to intervene, regardless of whether the student is autistic or not.
But if a student is engaging in behavior that is merely weird but doesn’t affect anyone
else (such as rocking, flapping, or spending free time sorting and lining up his/her own
belongings instead of playing with other children), and if the behavior is not distressing
to the student (as it would be in OCD, in which the person wants to stop the behavior
but isn’t able to control it), then this is the student’s own business and not a matter for
professionals to interfere with. [Sinclair 1998]
Many members of the autistic community also express concerns with interventions that
they perceive as unethical or, as Aaron suggested, ‘‘torture.’’ Under this rubric are prac-
tices such as the use of restraints and aversive interventions, such as electric shock and
amonia sprays to extinguish challenging behavior, including aggressive and self-injurious
behavior. One AACT member described having ‘‘something like a cattle prod’’ used when
he was a child to prevent his aggressive outbursts. He stated, ‘‘It never really helped
because I couldn’t control it, but they still used it.’’13 More recently, members of the
community have expressed concerns about the ethics of a widely used one-on-one inter-
vention known as Applied Behavior Analysis (ABA), a method developed by Ivar Lovaas,
aimed at reducing unwanted behavior and building socially useful patterns of behavior

17. CURE TO COMMUNITY 49
(Cooper et al. 1989; Eikeseth et al. 2007). Many autistic children receive intensive ABA
intervention, with therapy provided up to 40 hours per week. Not only does ABA render
‘‘autistic persons indistinguishable from non-autistic persons,’’ according to Dawson
(2005), a member of the autistic community, and thus denies the validity of the autistic
experience, but also ABA is applied without client consent. As Dawson notes:
Since scientists and societies have historically made significant errors in deciding which
behaviors (left-handedness, homosexuality) should be treated, and in which kinds of
people they deem acceptable and valuable, behavior therapies involving non-consenting
clients should require an ethical review process in order to decide which behaviors
should be treated. [2005]
For many years parents in the United States and Canada have sought to have ABA, a costly
intervention, publically funded by the government. In British Columbia, parents of a child
with autism requested that the government pay for ABA intervention as a medically
necessary intervention for all children with autism between the ages of three and six. The
basic premise of their argument was that ABA is the most effective, evidence-based inter-
vention available and that ‘‘unless their condition is successfully treated, almost all autistic
children are doomed to a life of physical, emotional, social, and intellectual isolation and
eventual institutionalizationFa tragic outcome for the children, their families, and society.’’
(The Auton Case: The Intervener’s Factum n.d.).Two lower courts upheld the parent’s
arguments. But in 2004, the Supreme Court overturned the ruling and sided with
those opposing the routine use of ABA for children with autism. Among those who
submitted affidavits objecting to the parents’ claim was Michelle Dawson. Her concerns,
which she posted on the Internet, infuriated many parents, leading to many harsh responses.
One parent wrote:
As with any other condition that would threaten their [her children’s] future and their
happiness, I do as much as I can to help them be as functional and as normal as possible.
And no, ‘‘normal’’ to me does not mean ‘‘a cookie-cutter robot-child, trained to do
my will.’’ It means: ‘‘able, like most people without autism, to lead an independent,
purpose-filled life.’’ Able to speak, able to communicate, able to form and keep
relationships . . . I find Dawson’s assertions damaging and dangerous to children. Any-
one who mounts a public campaign to deny medically necessary and clinically
appropriate treatment to children with autism is harming those children. [Weintraub
2002]
As the autistic community grows, significant internal strife continues with arguments,
hurt feelings, threats, and splintering factions. A few months after I stopped attending
AACT meetings, Harold informed me that a group of people, whom Harold called ‘‘the
more radical Aspies’’ split off from AACTand began their own organization. The schism has
left the AACT without some of its more vocal members, and the group has floundered in its
efforts to reestablish a clear mission. After the split, the proposal to have a neurotypical
facilitator was dropped because no one but Harold was willing to put forth the effort to
make this happen. Although Harold maintains his role in AACT, his passion for the group
has clearly waned.

18. 50 ETHOS
The autistic community recognizes that its survival will require members to develop new
skills, including the management of conflict and dissent. One member of AACT, trying to
add humor during a contentious discussion, stated, ‘‘I think we just need to learn how to
communicate. I mean, think about it, we haven’t had much experience being social, have
we?’’ One FC-using blogger, expressing ‘‘a few thoughts on dissent and communities’’ wrote:
Communities that can’t handle dissenters aren’t real communities, but can certainly
grow into them if they learn to handle dissent by doing something other than a Chicken
Little routine . . . Don’t see dissent as a threat, see it as a source of strength. Don’t
issue with-us or against-us ultimatums and lash out and bicker yourselves to death about
who said what. Otherwise you’re doomed even if you never do get open dissent of this
nature again: If this community is that fragile, it’ll be ineffective in ever getting things
done. [Baggs 2007]
How the autistic community will handle these challenges remains to be seen. It is unlikely,
however, that this community will disappear. As rates of autism soar and the numbers of
adults with autism increase, it is a certainty that more autistic people will be asking to be
valued and accepted as themselves.
Conclusion
The emergence of the autistic community reinforces the notion that conceptualizations of
disability are social constructions that are constantly shifting. Following in the tradition of
other social movements, the actions of this community are moving autism away from a
biomedical diagnosis into the realm of political consciousness. Community members ask
not just to be included in the social world but demand that human diversity be valued. Al-
though this community does not represent the views of all people with autism, it does have
the potential to challenge health practitioners, parents, and society as a whole to confront
attitudes toward difference, to consider who has the right to make decisions for others, and
to rethink what it means to live a meaningful life.
Clearly for health care practitioners who are, most often, rooted in the biomedical world,
this autistic authored reconceptualization poses challenges and to some, threats. However,
as the larger disability movement gains momentum, practitioners are forced to ask them-
selves questions about their beliefs about the nature and cause of disability, and, perhaps
more importantly, their beliefs about what should be done about disability (Kielhofner
2005). With the trend in health care toward client-centered practice, that is, allowing
the client to actively direct their own care and acknowledging that clients know their own
needs and experiences best (Law et al. 1995), research offering ethnographic insight com-
bined with the voices of people with autism has the potential to reshape how services are
delivered. Although the autism community has, by and large, rejected research from a bio-
medical perspective, partnering with social scientists in participatory action research
projects offers another opportunity to transform societal notions of autism and appropriate
services.

19. CURE TO COMMUNITY 51
Autism is remarkable for its significance to many issues at the core of psychological an-
thropology. Research with this community offers particularly interesting insights into the
nature of human sociality forcing a broader consideration of what it means to be social and
how sociality is expressed (see Ochs and Solomon this issue). Viewing the practices of the
autistic community through an ethnographic lens provides new perspectives on social oc-
cupations. Although some practices are unique to the autistic community, it is evident that
as society is transformed by technology, the nature of human sociality may be scaffolded and
transformed in ways that come to mirror an autistic sociality and thus reframe the disabling
properties of autism itself in more positive terms. In turn, further interdisciplinary research
blending psychological anthropology, occupational science, and disability studies promises
to continue to highlight the nature of autistic socialities in ways that should broaden and
transform anthropological notions of human sociality to include neurologically diverse
groups.
NANCY BAGATELL is Assistant Professor of Occupational Therapy, Quinnipiac University.
Notes
Acknowledgments. I thank Melissa Park and Olga Solomon for commentary on this article, Donald Holmes for
editorial suggestions, and a heartfelt thanks to the participants in this study.
1. Institutional Review Board approval for this research was obtained from the University of Southern California
and written consent was obtained from all participants.
2. Pseudonyms are used throughout this article for the group and members of the group to maintain confidentiality.
3. The word occupation, from the Latin root ‘‘occupacio,’’ meaning to seize or take possession, implies doing or
action (Englehardt 1997; Yerxa et al. 1990). It refers to ‘‘chunks of culturally and personally meaningful activity in
which humans engage that are named in the lexicon of the culture’’ (Clark et al. 1991:4). Occupations include 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). The study
of occupation is the focus of the academic discipline of occupational science.
4. Although autism is often referred to as an epidemic with rates reported to be as high as one in 150 (Center for
Disease Control 2007), not everyone concurs that the rates of autism have increased. For a more extended discus-
sion of this issue, see Grinker (2007).
5. Also included in the category of Pervasive Developmental Disorder are the rather rare disorders of Rett
Syndrome and Child Disintegrative Disorder (APA 1994).
6. See Grinker (2007) for an extended discussion of the issue of autism and diagnostic labels.
7. Depression is often reported in the literature on AD and High Functioning Autism. Klin et al. (2000)
reported that children with AS and HFA are at greater risk for depression and anxiety than the general
population.
8. Sensory processing differences are frequently identified in the literature. Baranek et al. (2005) reported that
approximately 70 percent of people with autism experience sensory-perceptual differences. These types of differ-
ences include over sensitivities and well as underresponsiveness. Common sensory processing differences include
heightened hearing, sensitivity to touch, and underresponsiveness to pain. Sensory integration therapy, an occupa-

20. 52 ETHOS
tional therapy intervention developed by Ayres (2005) is frequently provided to help reduce some of the sensory
concerns of autistic people.
9. Perhaps the community that warrants the greatest comparison is the Deaf community. See Padden and Humph-
ries (2005) for an extended discussion of the development of Deaf Culture and the resistance it has faced regarding
the use of American Sign Language and cochlear implants.
10. Parent-led autism organizations have been instrumental in lobbying for increased federal funding to address
autism. They have lobbied for research that focuses on intervention and cure in addition to the more traditional
basic research that focuses on genetics (Silverman and Brosco 2007). Currently, the federal government invests
approximately $100 million on autism research, an over 500 percent increase in the past decade. Interestingly, there
are various factions of parent organizations; those that support the vaccination claim (see Kaufman this issue) and
those that support the genetic viewpoint.
11. Facilitated communication is a method that received a significant amount of attention, both positive and neg-
ative. Introduced to autistic people in the late 1980s and early 1990s, it is designed to enable people who have
limited verbal communication skills an alternative means of communication. With a facilitator, who provides
support at the hand or wrist using backward resistance to downward movement or merely a touch at the elbow or
shoulder, unexpected literacy abilities were reported (e.g., Biklen 1990; Biklen and Cardinal 1997). Although some
educators, therapists, and parents embraced the method, others were skeptical, and controlled studies failed to
validate the method (Mostert 2001).
12. The transcription style used is adapted from the system developed by Gail Jefferson (cf. Sacks et al. 1974:
731–733).
word Italics indicate emphasis, signaled by changes in pitch or amplitude.
WOrd Capitals indicate increased volume.
... Ellipses indicate a trailing off of a sentence.
(( )) Double parentheses of italicized information enclose descriptions of conduct and other com-
mentary on the transcribed talk.
13. Aversive interventions, although not used frequently, are still in the news periodically. For example, the Boston
Globe published an article highlighting the use of aversive therapy at a school for children with challenging behavior,
including children with autism (see Joyce 2006).
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