Ari Ne'eman (Photo: Henry Leutwyler)
|
On December 1, the NYU Child Study Center came out with advertisements in the form of ransom notes. One said, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning.” It was signed “Autism.” Another said, “We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now,” and was signed “Asperger Syndrome.” Harold Koplewicz, director of the center, hoped the ads would propel undiagnosed children toward competent professionals. But they repelled and upset a subset of the very population they were meant to assist: people with autism-spectrum disorders.
Autism activists spearheaded a huge protest. The chief organizer was 20-year-old Ari Ne’eman, who has an Asperger’s (autism without speech delay) diagnosis. In a memo to his Autistic Self Advocacy Network, he denounced the campaign as relying on “the oldest and most offensive disability stereotypes to frighten parents.” While people with diagnoses of autism and Asperger’s have difficulty with social interaction, he added, “we are not incapable of it and can succeed and thrive on our own terms when supported, accepted, and included for who we are.” Stereotypes of autism were self-fulfilling, he argued. As he told me later, autistic adults were abandoned to “rot in institutions because of the perception that there is no way they can live in the community.”
Ne’eman started a letter-writing campaign and recruited support from the major American disability groups. The campaign rapidly escalated and was soon reported in the New York Times, The Wall Street Journal, and the Washington Post. This was startling for several reasons. Autistic people are held to be bad at social functioning—and therefore incapable of the organization such protests entail. Autism advocates are an entirely new category: The whole idea didn’t really exist five years ago. Moreover, rather than advocating for a cure, or seeking research into the cause of the much-publicized “autism epidemic,” these activists argued that society needed to change, not autistic people. Koplewicz was stunned. “People kept misinterpreting the ads, and there was a contagion to that. And there was no way we could seem to explain ourselves,” he said. Less than three weeks after they appeared, the ads were pulled. It was a signal triumph for the neurodiversity movement, the self-chosen name for the autism-rights brigade.
The first person to articulate the autism-rights position, Jim Sinclair, has produced only a few page-long essays. In his seminal invective, “Don’t Mourn for Us,” from 1993, he wrote, “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’ Read that again. 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.”
The term neurodiversity was put forward by Judy Singer, an Australian whose mother and daughter have Asperger’s and who is on the spectrum herself, and was first published by the American writer Harvey Blume. “I was interested in the liberatory, activist aspects of it—to do for neurologically different people what feminism and gay rights had done for their constituencies,” Singer said. Singer, Blume, and Sinclair, voices in the wilderness in the nineties, are now part of a thriving culture: There are Websites and T-shirts, and slang like NT, or “neurotypical” (a playful slur for the non-autistic), Aspies, and auties. The neurodiverse present regularly at autism conferences. Some of the first wave of activists are parents of autistic children, but more recently, autistic adults have been advocating on their own behalf. The Internet has made the climate even more hospitable to an autism-rights position, allowing activists to locate one another and communicate at their own pace. The Web, Singer said, “is a prosthetic device for people who can’t socialize without it.”
These activists argue that autism is not an illness but an alternative way of being. The preferred terminology among disability activists is to speak of a “person with deafness” rather than a “deaf person,” or a “person with dwarfism” rather than a dwarf. But Sinclair has said that “person-first” terminology denies the centrality of autism and has compared “person with autism” to describing a man as a “person with maleness.”