Ethos

From Cure to Community: Transforming Notions of Autism

Authors


Abstract

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 community: 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 resistance 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 transformations: 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

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 AACT was founded in the early 1990s 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. 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 financial 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. Occasionally, spouses, significant others, family members, and outside supporters—for example, group home staff—accompany 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 communities, 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 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 individuals 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 intelligence 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.

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 identified (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 advancing 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 impossible—to 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 cyberspace, many of the nation's autistics are doing the very thing the syndrome supposedly deters them from doing—communicating.”

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 provides 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 communicating.” 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, 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 figured 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 considered 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 restricted 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. According 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 “problem” 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 symptoms—his 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 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 community, 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 activities 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 fingers in a rhythmic pattern while the other man rocked back and forth in time. At first glance, these motions appeared disconnected but after a few minutes, I noticed how synchronized 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 immediately 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 bad—so 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 someone 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” (http://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 type—loafers and Izod shirt), who apparently was the father of a child with autism, went on the outing. He 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 intimately 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 therapist—a 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 therapist'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” (http://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 time—at a conference—I 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 parents of children with autism, clinicians, and scientists. The friction has centered largely on how autism is thought of—is 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 organizations 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 conversations.” 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 devastating 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 community. Some organizations founded by NTs are considered “autistic-friendly.” The Autism National Committee, for example, is dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches (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 violation 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 “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 corresponding 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 treatments—and 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 puzzle—with 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.”

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 stigmatizing nature of the campaign, a letter-writing drive was organized, petitions were circulated, 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 families—financial 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 perspective.” 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 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 advocates 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” (http://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 understand 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 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 hard—finding 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 things—like 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 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, gastrointestinal 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 interventions with an additional purpose—to 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 autistic 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 displaying 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 practices 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 intervention known as Applied Behavior Analysis (ABA), a method developed by Ivar Lovaas, aimed at reducing unwanted behavior and building socially useful patterns of behavior (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 intervention 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 institutionalization—a 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. Anyone 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 AACT and 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.

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. Although 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 themselves 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 combined 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 biomedical perspective, partnering with social scientists in participatory action research projects offers another opportunity to transform societal notions of autism and appropriate services.

Autism is remarkable for its significance to many issues at the core of psychological anthropology. 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 occupations. 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.

Notes

Acknowledgments

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 discussion 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 differences 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 occupational 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 Humphries (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 negative. 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).
wordItalics indicate emphasis, signaled by changes in pitch or amplitude.
WOrdCapitals indicate increased volume.
… Ellipses indicate a trailing off of a sentence.
(( ))Double parentheses of italicized information enclose descriptions of conduct and other commentary 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).

NANCY BAGATELL is Assistant Professor of Occupational Therapy, Quinnipiac University.

Ancillary