by John Donvan
Then those “Ransom Notes” billboards began to appear.
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WE HAVE YOUR SON.
The stark fearmongering insensitivity stunned many in the autism community. But when Ari Ne’eman heard about it, he saw an opportunity. He was walking across the University of Maryland–Baltimore campus when his phone received a burst of emails from members of his organization who were alarmed about what was happening in New York. The campaign was only a few days old when several neurodiversity bloggers became aware of it and alerted several others. It had become a storm, but only inside their small circle.
Ne’eman moved rapidly. He immediately put out an action alert to ASAN’s members, urging them to email and call the NYU Child Study Center without delay. The alert provided names of actual people to ask for at NYU, as well as at the ad agency and the billboard company that had donated their time and space. A petition was started. The New York newspapers were called. And, most critically, Ne’eman solicited support from other, more recognized, disability organizations, whose credibility he hoped would elevate his own protest above the level implied by a mere college student rallying a bunch of bloggers.
Out of this came a letter signed by fourteen veteran organizations. News coverage followed. Within days, the ad campaign—and the campaign against the ad campaign—had attracted coverage from the New York Times and the New York Daily News. Reached by reporters, the director of the Study Center, Harold Koplewicz, appeared not to recognize the damage. He stated he was satisfied that the campaign was serving its purpose, which was to bring attention to autism. He had already decided, he told the Times, that despite the upset, for which he was sorry, “we should stick with it and ride out the storm.”
But the storm widened. Altogether, more than three thousand people contacted NYU, the vast majority of them unhappy with the campaign, including many parents. “Dear Autism,” one mother wrote in an email to NYU, in mockery of the campaign, “You don’t have my son. I do. I will make sure that he is never defined by his autism alone…I will make sure that we celebrate his gifts.” Soon NYU was also getting calls from the Washington Post and the Wall Street Journal.
Two weeks after sending the action alert, Ne’eman was in his dorm room when a reporter from the Post called. He was seeking a reaction to the announcement just made in New York City: NYU was killing the ad campaign. Ne’eman asked the reporter to hold a moment, placed his phone on mute, punched the air as hard he could, then returned to the call. “These ads reflect some very old and damaging stereotypes,” Ne’eman said, sounding like an activist who had been doing this work for years.
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IT WAS A turning point—for neurodiversity, for the Autistic Self-Advocacy Network, and for its founder, Ari Ne’eman. Emboldened, and—just as important—no longer a bit player in the autism conversation, Ne’eman became someone reporters turned to for quotes, and ASAN saw its membership swell. In the next few years, Ne’eman continued using action alerts to rally his followers against those he saw as enemies. Autism Speaks remained a preferred target. In Columbus, Ohio, an Autism Speaks awareness-raising “walk” was met by a counter-walk organized by local ASAN members. In 2009, ASAN helped organize a web-wide protest that led to the removal of an Autism Speaks video called I Am Autism—which again personified autism as an evil thief that steals children.
Meanwhile, in recognition of neurodiversity’s rising profile, Ne’eman, as its most visible representative, was chosen by the White House in 2009 to serve on the National Council on Disability. In 2010, he was named to the federal Interagency Autism Coordinating Committee, the board that sets priorities for the federal government on autism research and services, which autism parents Lyn Redwood and Alison Singer had both served on. His presence on the committee helped it fulfill its legal mandate to include at least one person who was on the spectrum.
Being on the spectrum offered Ne’eman a distinct political advantage over those he saw as adversaries. It was this: there were few people who wanted to take him on in public. Although Ne’eman himself did not shrink from engagement, there was little upside for anyone to be seen arguing with a man who wore his autism as a badge of honor, depicting himself and his cohorts as targets of bigotry. In that regard, Ne’eman had launched ASAN at the exact right moment. The organization’s assertion that being autistic should be seen not merely as a developmental disability, but as a neurological variation—one that makes “all Autistics as unique as any other human being”—resonated in a culture on the cusp of accepting wider variations in gender identity. Supporters of the neurodiversity viewpoint in fact often invoked the campaign for LGBT rights, pointing out parallels to their own campaign, and referring to Ne’eman and other outspoken advocates as being “openly autistic.” The implication was that anyone challenging Ne’eman’s arguments was narrow-minded and intolerant of difference. This was why Ne’eman often ended up in a one-sided debate. No respectable organization wanted to risk coming off as unenlightened by getting into an argument with him. True, he had plenty of detractors in chat rooms and on blogs, but Ne’eman’s biggest target, Autism Speaks, more or less gave him a pass to say what he wanted to say without retort.
And so, in 2012, Autism Speaks turned the other cheek when one of its own executives was named to a prestigious post by the White House, and Ari Ne’eman’s organization put out a statement condemning both the executive and the decision to appoint him. The post was a slot on the President’s Committee for People with Intellectual Disabilities, and the appointee was Peter Bell, Autism Speaks’s executive vice president. Bell had entered autism advocacy in the late 1990s as president of that group whose name—Cure Autism Now—was anathema to everything Ne’eman believed. Calling the appointment “disappointing and ill-advised,” the statement charged that “Peter Bell has a long history of supporting fringe, anti-vaccine positions widely discredited in the scientific community,” while Autism Speaks had its own “checkered and controversial history.” Like his employers, Bell was constrained by his position when this attack came. He left it unanswered.
It turned out, however, that Bell’s wife, Liz, had once given Ne’eman a piece of her mind. Three years earlier, in April 2009, she and Ne’eman happened to attend the same public forum, which had brought together a group of autism “stakeholders” for a conversation with New Jersey governor Jon Corzine. When Ne’eman was called on, he stood, faced the governor, and made his familiar two-prong argument—that people with autism did require supports, which should be provided, but that did not justify any attempts at treatment, or cure, or any other response that would make an autistic person any less autistic.
To Liz Bell, who had never heard Ne’eman speak before, the first part of his argument sounded completely reasonable. Acceptance by the community, work opportunities, self-determination to the maximum degree possible—these were values she and her husband and virtually every autism parent she knew believed in and had spent years fighting for. If this was neurodiversity, Liz Bell was all for it.
But the other part of his message—don’t cure—was one Bell hoped would make no strong impression on this audience, especially on an outsider with real power like the governor. She didn’t want him mistaking this impressive college student for the face of all autism. Indeed, the more activists like Ne’eman—talented, articulate, persuasive—proudly asserted their autistic identities, the more people seemed to forget about those with autism who had severe impairments. Bell had in mind those who would never speak, who had to be watched round-the-clock so that they didn’t wander out at night and drown in a river or a swimming pool, who needed their diapers changed at least twice a day, even as adults. Unable to give interviews, these members of the autism community rarely had their stories told on the evening news, leaving the public with a skewed understanding of just how debilitating it could be, and how much it undermined opportunities for a life well lived, to have what some families privately called, in defiance of the neurodiversity movement’s argument, �
��real autism.”
Bell’s son, Tyler, age sixteen, had the kind of autism the cameras rarely turned to. He had an IQ far lower than Ari’s, little ability to speak, and extreme difficulty with such basic skills as taking a shower, shaving, or dressing himself. Like about a quarter of individuals with “classic” autism, Tyler also suffered seizures. He was frequently in intense pain from digestive problems.
Listening to Ne’eman addressing the governor, Bell understood that he meant Tyler no harm. But he had never lived with anyone like Tyler. Or cared for anyone like him, day after day. And despite the insinuation in Jim Sinclair’s “Don’t Mourn for Us” manifesto that parents like her wished their kids did not exist and just weren’t trying hard enough to understand them, Bell believed that no one in Tyler’s life understood him better than she did—whether he was communicating with words or not. At times, she despaired for what might happen to him after she was gone, when there might be no one left who could make sense of his wants and needs. That too was a problem neither Ari Ne’eman—nor Ari Ne’eman’s mother—would have to address.
As the event broke up, Bell could not help herself. She wanted to say all of this to Ne’eman’s face. A friend escorted her over to the office of the director of the center hosting the forum and dropped her off in front of Ne’eman, introducing her as “Liz, Peter Bell’s wife.” Noting both Bells’ past association with Cure Autism Now and current position with Autism Speaks, Ne’eman could not help himself either. He launched into his talking points about what was wrong with any group fighting for a cure. Liz Bell pushed back, describing her own son and what his life was like. She talked about the constant diarrhea. About how Tyler had been talking at two and then started losing language. About how he also lost the ability to sleep through the night, which he had also been doing until the age of three. About the pain he was often in now. About his seizures. Put all that together, she said, and that was not “another way of being human.” That was being sick.
As for Ne’eman’s distaste for the word “cure,” Bell told him: “If someday, Ari, my son and I can argue like you and I are arguing now, and he can make the case you’re making against cures—then, yeah, I will be saying he was cured.”
Ne’eman listened respectfully, but he stood his ground. He also left Bell with an insight about him she had not anticipated. His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evident, Ne’eman was unyielding. He did not flinch, offer sympathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne’eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne’eman’s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait—one that Simon Baron-Cohen had referred to as “mindblindness.”
A corollary theory, also put forth by Baron-Cohen, held that this cognitive style interferes with the experience of feeling empathy. The idea was controversial and insulting to some people with Asperger’s syndrome, who pointed to studies suggesting the empathy “deficit” in Asperger’s was overstated. But others reluctantly accepted impairment in this area as something real, part of what made Asperger’s so challenging to live with in a world of “neurotypicals.”
Ari Ne’eman was definitely on the spectrum, Liz Bell told herself as she headed for her car that day. And yes, it was integral to who he was. But she didn’t want him speaking for her son, Tyler. His condition, and Ari’s, had nothing in common.
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THE NEURODIVERSITY ARGUMENT, which continued to gain adherents, owed its existence to the recognition of Asperger’s syndrome in the latter part of the twentieth century. When Lorna Wing had used Asperger’s to make her argument that autism was a big, wide, deep, and blurry spectrum, and the DSM recognized the diagnosis in its 1994 edition, the DSM-IV, the boundaries around the condition grew exponentially. Without both these developments, it seems unlikely that the notion of autism that Leo Kanner coined in 1943 could legitimately be stretched to include large numbers of people as intelligent, talented, and independent as Alex Plank, Michael John Carley, and Ari Ne’eman in 2010. Asperger’s was their ticket onto the spectrum—theirs and many others, and it gave the neurodiversity argument its most effective debaters and promoters.
Then, in 2013, Asperger’s as a diagnosis was killed off by the American Psychiatric Association—dropped from the DSM. The turnabout had nothing to do with the discoveries reported three years earlier by Austrian historian Herwig Czech, suggesting that Asperger may have cooperated with the Nazis’ program of killing disabled children. Because Czech had made his presentation in German, to a mostly local audience, his findings had made no impression in the English-speaking world, where awareness of Asperger’s predominated.
Rather, the move by the American Psychiatric Association, which had been a long time coming, was the result of continuing doubts about the usefulness of the concept of Asperger’s. This was evident in the medical literature as early as 2001. “Does DSM-IV Asperger’s Disorder Exist?” asked the title of an article that year in the Journal of Abnormal Child Psychiatry.
More such papers followed, asking similar questions, and most of them were answered in the negative. Twelve years later, a paper in Health was still noting that, “in scientific terms, [Asperger’s Disorder] has proved to be rather an elusive category.”
To tens of thousands of people with the diagnosis, this seemed an absurd discussion. Of course Asperger’s existed—because they existed. And so did Asperger’s organizations, support groups, and clinics specializing in it, operating all over the United States and elsewhere, especially in Britain and Australia. But professionals who studied Asperger’s knew what some wearers of the label did not: from a scientific perspective, Asperger’s syndrome constituted a diagnostic malfunction. From the start, it had failed to meet a basic requirement: to mean the same thing every time it was used.
It was the same problem that had plagued the understanding of autistic traits from the beginning—a lack of agreement on whether everyone was even talking about the same thing. Hans Asperger had described the first cases of the syndrome named for him, but he never drew up a strict list of criteria. Lorna Wing attempted to do so when she brought Asperger’s to the world’s attention, as did Sweden’s Christopher Gillberg, whose criteria were adopted for many, but by no means all, research studies elsewhere. The DSM-IV committee, back in 1994, tried to define the diagnosis as well, as did plenty of others. But none of these varied lists of criteria was quite the same as any other. For example, different theorists weighed language development and intelligence differently. There was also disagreement about how to label a person whose behavior changed over time—someone who might seem more “Aspergian” later in life than he or she had in early childhood.
As ever, clinicians giving out labels were making judgments based on their personal experience and understanding of what Asperger’s should look like. And as usual, objectivity suffered in the process. One much-publicized study discovered that among twelve different American research centers, the likelihood of a person being diagnosed with Asperger’s depended less on his or her actual traits than on which of the twelve centers he or she went to for evaluation. In another study, researchers found that, using the DSM-IV criteria, even Hans Asperger’s own original four cases would not qualify for an Asperger’s diagnosis. The authors who asked “Does DSM-IV Asperger’s Disorder Exist?” published data suggesting to them that clinicians were simply ignoring the DSM definition and instead were diagnosing with “definitions influenced by the literature and popular belief.”
“Asperger’s means a lot of different things to different people,” researcher Catherine Lord told the New York Times in 2009. “It’
s confusing and not terribly useful.”
As Lord spoke, yet another new version of the DSM was in the planning stages. She was in the working group assigned to figure out what to do about Asperger’s and the three other diagnoses based on autistic traits: Autistic Disorder (the “classic” autism), childhood disintegrative disorder, and the catchall PDD-NOS. In February 2010, the group published a draft version of its likely solution. Its plan was to collapse all four diagnoses into one, all-encompassing diagnosis, to be known as Autistic Spectrum Disorder. It would still include a way to distinguish among various presentations of autistic traits, by introducing a scale for specifying severity of the key symptoms. This would mean that a person previously diagnosed with Asperger’s would most likely be recognized, for future DSM purposes, as having autism, but without accompanying intellectual or language impairment. It would also be the end of the line for Asperger’s. The name, and the diagnosis, would be departing the pages of the DSM forever.
Opposition came from all over the autism community. Fred Volkmar of Yale resigned from the working group when he could not prevail upon his colleagues to keep Asperger’s alive. Temple Grandin weighed in, citing the size and vocal strength of the Asperger’s community as a reason to retain the category. “PDD-NOS, I’d throw in the garbage can,” she told the Times. “But I’d keep Asperger’s.”
A New York State lawmaker, an autism dad, tried to stop the clock with a bill that would officially establish the outgoing DSM language as the state’s “definition” of autism. It drew 44 cosponsors in the legislature’s two houses. Some 9,000 people signed an online petition, written by Michael John Carley, opposing the changes. Another 5,400 signed a petition sponsored by the Asperger’s Association of New England, demanding that the DSM retain Asperger’s “to help ensure clinical continuity and the established sense of community precious to already diagnosed individuals and families, and to maintain the hard won understanding of the label in the population at large.”