Jim Sinclair. In addition to being on the spectrum, he was born with the physical characteristics of both genders (hermaphrodite). At a very young age, he began identifying with other disabled people and had the concept that you don’t throw away people for being broken. He was clearly bright and articulate – too bright and articulate for an autism diagnosis. When he became tense or overwhelmed and began flapping his hands or rocking, he learned to suppress those behaviours, which only made him more anxious. When watching his peers interact, he preferred to be off somewhere else, doing his own thing.
What only Sinclair knew was that, until he was twelve, he was speaking primarily in echolalia. “I had to be given the words first, then I could pick which ones I needed in a particular context. I could take words that were in a textbook, or that a teacher had said, and parrot them back, so I got good grades. But what I couldn’t do was put new words together on my own.
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As Sinclair and his peers become teenagers, the increasingly complex rules of the social world seem incomprehensible to him. When other kids bullied him, which happened often, his mother would say, “Be nice to them and they’ll be friends with you.” But he couldn’t figure out why he was expected to be friends with people who treated him so cruelly.
By the time Sinclair was in graduate school, his efforts to pass as nonautistic began falling apart. Once he was stripped of the reassuringly familiar structures and routines of his life at home, he felt the behaviours he had worked so hard to keep under wraps returning. He was stimming a lot more in public. He couldn’t suppress the stims and go to school, hold down a part-time job, and do his own grocery shopping, laundry, and everything. He finally shut down and was unable to respond, lost his job at the university, and became homeless for a time.
Trying to make sense of why his life was imploding, he read an information packet on autism, but the description didn’t seem to apply to him. “I didn’t consider myself to be someone who didn’t have empathy, could not form emotional bonds, and wasn’t interested in relating to others.” After watching Joseph Sullivan’s Portrait of an Autistic Young Man, he had a profound sense of recognition. For the first time in his life, he could understand the body language of someone. He could see what experts could not – that Joseph was trying to communicate through his behaviour. He didn’t seem oblivious but he was listening and asking for clarification because he didn’t understand the terms.
In order to seek out other autistic adults, Sinclair subscribed to a quarterly publication called MAAP (more able autistic people), started in 1984 by a woman with a child they suspected had autism but because she was able to speak, had ruled it out. Through MAAP, Sinclair connected with several like-minded people and spoke at a conference: “Being autistic does not mean being inhuman. But it means that what is normal for other people is not normal for me, and what is normal for me is not normal for other people.” He compared himself to “an extraterrestrial stranded without an orientation manual.” He felt like a “self-narrating zoo exhibit.”
Donna Williams. A MAAP member, she wrote an autobiography called Nobody Nowhere about observing human interactions from a distance, straining to make meaning out of a confusing barrage of jumbled sensory impressions. She met Sinclair in a social situation, a new experience outside of conferences. They forgot to eat, do chores and shared playful common terms they’d developed to map their subjective experiences, finding a surprising amount of overlap, including stimming together. Some behaviours that had been viewed for so long as inherently antisocial could become social in a group of autistic adults. Together, they felt like a lost tribe. They all had a sense of belonging, of being understood – an autistic space.
Sinclair was one of the first openly autistic adults online by joining a digital mailing list out of St John’s University in New York founded by Ray Kopp. One of the most frequently asked questions was whether Kanner’s syndrome could persist into adulthood.
Sinclair also launched the first autistic-run organization, Autistic Network International (ANI) to stand up for the self-determination of people all across the spectrum, not just those considered high-functioning like the members of the MAAP list. All of ANI’s original founders had been branded low-functioning as children and had gone on to earn university degrees. They understood that functioning levels change not only in the course of the life span but also day-to-day. The term low-functioning often obscured talents and skills that could be brought out by providing a more suitable environment or an alternate means of communication.
Their subculture gave rise to its own group slang. Neurotypical is a label for nonautistic people was used for the first time in their newsletter – people on the spectrum were fully capable of irony and sarcasm at a time when it was widely assumed that they didn’t “get” humour – “Neurotypical syndrome is a neurobiological disorder characterized by a preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure”. They referred to themselves as “autistic”, not people with autism – a term suggesting that autism is bad – so bad that it isn’t even consistent with being a person and separating it from the person.
The emergence of e-mail, electronic bulletin boards, internet chat, America Online, and ultimately the World Wide Web provided a natural home for the growing community of autistics where they could interact at their own pace in a language that often felt more native to them than the spoken word. Autistic people have an affinity for computers as there is only one right way to tell it to do something – it doesn’t misinterpret what you tell it and do something else as people do. They felt accepted for the quality of their thoughts rather than the quality of their speech.
The ANI posse began appearing at conferences and set up booths that were little oases of autistic space where people could take a break from the probing stares, the swirl of perfumes, the press of flesh, the unpredictable outbreaks of applause, and the constant reminder that their existence was a tragic puzzle.
Sinclair delivered a manifesto at the first international conference on autism in 1993 that would change the course of history. He aimed to dispel several long-standing myths, starting with Lovaas’s notion that there was a normal child trapped within an “autistic shell,” waiting to be rescued. He described autism as “a way of being . . . that colours every experience, sensation, perception, thought, emotion and encounter, every aspect of existence.
He acknowledged that some amount of grief was natural but stressed the importance of parents separating their expectations of an idealized child from the child in front of them who desperately needs their love and support. If grief goes on for too long, it transmits a dangerous message to the child: that they are inadequate as they are.
Autism presents a particularly difficult challenge for parents because the child inhabits a different world of subjective experience from the one that they take for granted. Much of the suffering associated with autism is the result of they are habitually denied the services they need. He encouraged parents to use their collective power to change it. “Grieve if you must, for your own lost dreams, but don’t mourn for us. We are alive. We are real. And we’re here waiting for you.” ANI members were more compassionate, more accurate, and more understanding.
There was a wave of backlash from parents in the St. John’s list about autistics perseverating about the conference. They felt betrayed and launched their own online list, ANI-I in 1994. They developed a set of principles and policies: “We are here to affirm that autistic lives are meaningful and worthwhile. Discussions about ways to make autistic people ‘less autistic’, to ‘cure’ autism, to render autistic people indistinguishable from non-autistic people, or to prevent the births of future autistic people are not appropriate for this list.” ANI-I acted as an incubator for autistic culture, accelerating its evolution.
At conferences, they provided name-tag holders with two sides: red signified “Nobody should try to interact with me,” and yellow “Only people I already know should interact with me, not strangers. Green added later: “I want to interact but am having trouble initiating, so please initiate an interaction with me.” These turned out to be so useful that they have been widely adopted at autistic-run conferences all over the world.
It was time for autistics to hold a conference of their own. At Camp Bristol Hills in upstate New York, in July 1996, the camp offered an environment free of the sensory assaults unavoidable at most urban conference centers. The theme was “Celebrating Autistic Culture” and was attended by sixty people representing the complete diversity of the spectrum. The overriding principle was “opportunity but not pressure.” Autreat became an annual event and provided a template for similar conferences in other countries. The most commonly reported experience was that the participants didn’t feel disabled, though their neurology had not changed.
A new idea emerged: that people with Asperger’s have always been part of the human community, standing apart, quietly making the world that mocks and shuns them, a better place. That idea was given a name – neurodiversity. People with physical and cognitive differences were systemically disabled, excluded, and demonized by society. Handicapping the limitations of disability depends either on how well the environment is adapted to the range of people who use it or on the opportunities they have had to learn to cope with it, or both. Being autistic does not mean being devoid of empathy, and the spectrum spans a broad range of intellectual abilities.
NT is only one kind of brain wiring, and, when it comes to hi-tech, quite possibly an inferior one. Neurodiversity can be every bit as crucial for the human race as diversity is for life itself. Who can say what form of wiring will prove best at any given moment? It is not that more autistics were becoming visible in the world, but the world itself was becoming more autistic – and this was a good thing. The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time. Autism had come a long way since the days of Kanner when he had seen only 150 true cases. It was Asperger’s world now.
