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The Autism Rights Movement

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Cattle-handling-equipment designer Temple Grandin, author of the autism classic Thinking in Pictures, has long been the public voice of autism. Neurodiversity has dawned since she began grappling with autistic pride, and though she has enabled it, she is too late to be its beneficiary. Grandin argues that both the autistic person and society have to make accommodations. “I won’t do all the neurotypicals want, but you have to go halfway,” she says. “We had manners pounded into us. We had fancy dinners at my grandmother’s, and I was expected to sit at Granny’s table for twenty minutes and I couldn’t monopolize the conversation. You can’t degeekify the geeks, but you can be a polite geek. Autism is a continuum from genius to extremely handicapped. If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians. Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire. The problem is, you talk to parents with a low-functioning kid, who’ve got a teenager who still goes to the bathroom in his pants and who’s biting himself all the time. This guy destroys the house, and he’s not typing, no matter what keyboards you make available. His life is miserable. It would be nice if you could prevent the most severe forms of nonverbal autism.”

Grandin’s desire to find a middle ground resonated with me. If there is one thing that everyone in the autism world seems to recognize, it is the pervasive confusion about what qualifies as “sick,” and what qualifies as “odd.” Some of the geeks, in Grandin’s parlance, are autistic; some are just geeky. Some people with no language make social connections; others are highly verbal but unable to understand social rules; others are paralyzed by anxiety, or have hyperacute sensory responses that cause them to withdraw. Some kids have full use of language, and others have echolalia (meaningless repetition of overheard phrases), and yet others have language for basic communication but no more; Alison Singer, an executive vice-president of Autism Speaks, told me that her daughter had language at last—“which means that she says, ‘I want juice,’ not that she says, ‘I feel that you’re not understanding how my mind works.’ ”

“Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by those social ones yakking around the campfire.”

It’s also possible that what have been understood as emotional deficits are in fact something slightly different: communication deficits or sensory overload. “The perception of people like us as lacking emotion is wholly inaccurate,” Ne’eman says. “It’s the failure of society to understand the communication styles of autistics.” For many Asperger’s-syndrome and autistic people, Autism Diva Clark points out, “just being in the presence of others is as much work as it is for a normally social person to host a big party.” She told me that parents needed to learn not to take it personally if their child didn’t show affection in typical ways: While deaf children may never say ‘I love you,’ she argued, that doesn’t mean they don’t feel love. Seidel agreed with this, in terms of her own relationship with her kid, who Seidel said did indeed have an affectionate side, and when it began to blossom, her child would make tea for her—that was a form of love. “Why should I force eye contact or hugs on someone for whom that’s just noise?” she asks.

The irony, of course, is that empathy—the very quality at issue in defining autism—can be hard to come by among these warring factions. There is intolerance of neurodiversity activists, but there is also intolerance from them, and doing these interviews sometimes felt to me like watching Wimbledon; it made my neck hurt. In the film Autism Every Day, Alison Singer describes going to New York to look at schools for autistic children, being overwhelmed by the hopeless dreariness of the classrooms, and fantasizing, as she drove back over the George Washington Bridge, about driving off it with her daughter.

The neurodiversity people have had a picnic with this; Ne’eman drew a connection between these comments and the killing of autistic children, saying that Autism Speaks was “morally complicit in these murders.” It’s disrespectful toward Singer and Jenny Nash and other mothers like them to suggest that their struggles are anything less than passionately loving. Autistic children seem frequently, by virtue of the extra care they require, to inspire a desperate, enormous welter of adoration, fantastically powerful even when it is striated with frustration and sorrow. The love predicated on hope is as profound as that predicated on acceptance. The balance is infinitely difficult. “When your child is 12 years old and not toilet-trained, or is head-banging at age 15, how much of your acceptance is wise and how much is preventing recovery?” NIMH director Insel asks.


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