NeuroTribes: The Untold History of Austim and the Potential of Neurodiversity

by Steve Silberman

The authors of a major study published in Nature admitted that even the most common genetic factors brought to light in their research were found in less than 1 percent of the children in their sample. “Most individuals with autism are probably genetically quite unique,” said Stephen Scherer of the Hospital for Sick Children in Toronto. UCLA neurogeneticist Stanley Nelson added, “If you had 100 kids with autism, you could have 100 different genetic causes.” A wry saying popular in the autistic community, “If you meet one person with autism, you’ve met one person with autism,” turns out to be true even for molecular biologists.

It was as if the children were constantly generating rules about how things should be based on how they were when they happened to come across them. A walk taken along a certain route one day had to be taken the same way every time after that.

The outstanding, “pathognomonic,” fundamental disorder is the children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life. Their parents referred to them as having always been “self-sufficient”; “like in a shell”; “happiest when left alone”; “acting as if people weren’t there”; “perfectly oblivious to everything about him”;

The second common characteristic was a fear of change and surprise, which Kanner memorably christened an anxiously obsessive desire for the maintenance of sameness.

they pointed out that such children “call to mind the syndrome described by Kanner under the designation of ‘Early Infantile Autism,’ ” with certain differences. Unlike the Tripletts and the Muncies, the parents of these children felt that they were “normal babies” for the first years of their lives; only as they grew older and failed to make friends their own age (preferring to hang around adults) did their eccentricities become clear. They were capable of “good emotional responsiveness” to other people, but tended to be consumed with their special interests to the exclusion of more social activities. Robinson and Vitale made the interesting observation that the pursuit of these interests did not seem to be motivated by a craving for approval and reinforcement from others, but were driven by a feeling of “satisfaction from within the child.” They enjoyed learning for its own sake, as Asperger had observed a decade earlier. Furthermore, unlike Kanner’s patients, they had no delays in acquiring language and did not speak in surreal aphorisms, opaque neologisms, or echolalic references to themselves in the third person. In fact, they tended to be precociously articulate—particularly when they were expounding on the subjects that fascinated them.

Susie had a toy panda that she clearly loved—she carried it everywhere and seemingly couldn’t be happy without it. She would smell it, rub her cheeks against it, and enjoy the sensation of feeling its fur with her fingers. But what she never did, Lorna noticed, was to play games in which she pretended that the panda was a real bear. She also had a little tea set that Lorna had given her, and she would occasionally stage imaginary tea parties, but she never invited other children. She always sipped her imaginary tea alone.

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. Even a chatty “more able” adult could temporarily lose speech, and 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.

Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “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’ . . . 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.”

This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. He was equally prescient in insisting that the traits of autism are “not at all rare.” In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world.

Imagine if society had put off the issue of civil rights until the genetics of race were sorted out, or denied wheelchair users access to public buildings while insisting that someday, with the help of science, everyone will be able to walk.