by John Donvan
Months in its design, the ransom notes campaign was intended, according to one of the ad men, to act as “a wake-up call to families, educators and healthcare professionals, and spark dialogue so children can get the help they need.” The mock notes were being rolled out first in New York City, on eleven billboards and two hundred kiosks. After that, the campaign would be expanding to hit newspapers in a total of five major markets, over a period lasting at least sixteen weeks. The initial launch, according to an NYU press release, was “expected to net over 700 million impressions,” which sounded like a huge number.
Eighteen days after it was announced, however, the campaign was dead.
It had run afoul of the neurodiversity movement. And the movement had won.
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THE BEGINNINGS OF the neurodiversity movement are usually traced to the day in July 1993, when a thirty-one-year-old man named Jim Sinclair stood in front of an audience of parents at an autism conference in Toronto and identified himself as a person with autism. Then he delivered a manifesto. He proclaimed that for people like him, autism parents were part of the problem. For too long, he argued, fathers and mothers had made the mistake of believing that their children—by having autism—had been dealt some terrible blow by fate. But this was not true, Sinclair insisted. “Don’t mourn for us,” he said, because grief was not called for and never had been.
Later, Sinclair published an online essay based on the talk, in which he fleshed out his critique of the parent advocacy movement. The thrust of his argument was this: rather than always making life better for their children, they had insulted their children’s humanity and undermined their dignity.
“When parents say, ‘I wish my child did not have autism,’ ” Sinclair wrote, “what they’re really saying is, ‘I wish the autistic child I have did not exist.’ ”
It was jarringly reminiscent of Bruno Bettelheim’s discredited claim from the 1960s that mothers harbored a secret wish “that it would be much better if the child wouldn’t live,” thus causing autism in their children. In 1993, in a distant echo of mother blaming, Sinclair was attributing a parallel impulse to parents coping with autism in their kids.
“Read that again,” Sinclair continued. “This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.”
Sinclair was not a father. He had been driving himself to autism conferences for several years, speaking at many. But he had never delivered a message like this one, to parents whose children were, in many cases, disabled in the extreme. To Sinclair, that was beside the point.
“You try to relate to your autistic child,” he said, “and the child doesn’t respond…there’s no getting through. That’s the hardest thing to deal with, isn’t it?
“The only thing is, it isn’t true.”
He chided the parents for not trying hard enough to relate to their autistic children. “It takes more work to communicate with someone whose native language isn’t the same as yours,” he said.
As for the parents’ feelings of loss over the future their children would never have, Sinclair suggested that “the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups.”
“Go do whatever grieving you have to do,” he urged, but don’t do it in front of the autistic child. Then, he counseled, “start learning to let go.”
In the history of the neurodiversity movement, Sinclair’s essay became known as the “Don’t Mourn for Us” statement.
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FOR FORTY YEARS, from the 1960s onward, the work of autism advocacy had been a mission carried out almost entirely by mothers and fathers dedicated to making the world better for their kids. Theirs were the voices heard, speaking for people who could not speak for themselves. On behalf of their children, they had changed the world.
But Sinclair, speaking in 1993, was largely correct that the image of autism projected by the parents’ movement was often layered with sorrow, and rested on the premise that autism represented something gone wrong in the life of a child. This did not mean parents were lacking love for their children. Their irrefutable dedication to making their kids’ lives better proved the opposite. Mothers and fathers celebrated their children’s triumphs and laughed along with their quirks.
But in the three decades of activism before 1993, and certainly through the years following it, the predominant opinion was, very simply, that autism was a bad thing. The activist rhetoric so often portrayed the condition as an alien invader, a parasite, an epidemic, an enemy. This sentiment was captured precisely in the description of autism given to Newsweek by Portia Iversen, one of the parent-founders of Cure Autism Now. “It’s like ‘The Village of the Damned,’ ” Iversen said. “It’s as if someone has stolen into your house during the night and left your child’s bewildered body behind.”
Organizations had been picking names like Defeat Autism Now!, and books had titles like Targeting Autism. The greatest legislative triumph ever achieved by parent advocacy was called the Combating Autism Act, and the vaccine activists had seen autism as a criminally inflicted injury. They wanted the damage reversed and heads to roll. The largest and most prominent advocacy organization in autism in the early 2000s, Autism Speaks, had launched with a website that declared: “This disease has taken our children away. It’s time to take them back.”
It was exactly such thinking that Jim Sinclair and others attempted to refute by expounding on a philosophy they called neurodiversity. Its central tenet was that having autism—or “being autistic,” the phrase preferred by its adherents—was but one more way of being human. Framed in such a way, the idea sounded wholesome and wholly uncontentious. But its logical next step was a far more controversial assertion: Since being human required no cure, autism didn’t need a cure either. People with autism didn’t need to be rescued from their autism. And no effort should be put forth to make autism disappear.
The coinage “neurodiversity” is credited to an Australian sociologist, Judy Singer, who was on the spectrum herself, and who used the term in an honors thesis sometime in the 1990s. It took many years before the word was heard by a broader audience. Jim Sinclair, who was still talking about it, had set up an online organization for discussion of the idea about a year after his Toronto speech. The site, called Autism Network International (ANI), did not do much to popularize the neurodiversity point of view, perhaps because its small group of regulars tended to come across as hostile to site visitors who did not identify as autistic. There was not much love at ANI for “neurotypicals”—the term the neurodiversity camp used for anybody who did not have autism.
In 1998, an autistic woman known as Muskie had some fun with this when she set up a mock website for a fake organization she called the Institute for the Study of the Neurologically Typical. Muskie had her ISNT “experts” present the facts behind the disorder she referred to as “Neurotypical Syndrome.”
WHAT IS NT? Neurotypical Syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.
HOW COMMON IS IT? Tragically, as many as 9625 out of every 10,000 individuals may be neurotypical.
ARE THERE ANY TREATMENTS FOR NT? There is no known cure for neurotypical syndrome.
Neurodiversity made a fleeting appearance in the mainstream media in 1998, when The Atlantic’s Harvey Blume made the provocative suggestion that, for the coming Information Age, “neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.”
Neurodiversity’s central arguments made a small imprint on a legal matter in Canada a few years later, in 2004, when a former postal worker named Michelle Dawson, who was diagnosed with autism as an adult, filed a public comment on a case before the nation’s Supreme Court. Dawson presented a paper opposing parents who were suing for government funding for ABA therapy for their children. The parents lost. Daws
on’s testimony was not the decisive factor, but it was clear the justices had heard her, because they cited her views in their ruling. Dawson had argued that ABA was an abomination, akin to torture, whose goal, as the judges wrote, was “changing the child’s mind and personality.”
But those were pinprick impressions. By 2006, with fear spreading, autism had become a public concern, and Autism Speaks was in its second year of promoting awareness of the condition as a national emergency. Even so, almost no one in the general public, or even in most autism circles, had ever heard of neurodiversity. This was frustrating, and even alarming, to those who saw autism not as an emergency, but as central to their identities—and at the core of who they were as humans.
Then one of them, a teenager at the University of Maryland in Baltimore, decided to change the story line.
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ARI NE’EMAN WAS five years old when “Don’t Mourn for Us” was composed. Fourteen years later, as a college sophomore from New Jersey, he founded the Autistic Self-Advocacy Network (ASAN). Its motto, borrowed from disability-rights campaigns of the 1990s, was “Nothing About Us, Without Us.” ASAN’s mission—ensuring that the voices of autistic people were heard in policy debates and the halls of power—was another iteration of the neurodiversity movement. It was a large ambition for a campaign with no paid staff that was run out of a dorm room.
Ne’eman, who, even in college, was usually seen wearing a necktie and lugging around a briefcase, was diagnosed with Asperger’s at the age of twelve. He was sent for a while to a special school, which he disliked. He was reticent with reporters who asked about his past beyond that. In Troy, New York, in 2013, he gave a sympathetic newspaper reporter a typically vague answer to the question: “My experience growing up was similar to most autistic people,” he said. “We struggle socially. I had very strong interests in particular topics.” The reporter seemed to take the cue. That was all Ne’eman wanted to say about the subject.
Ne’eman was not at all bashful, however, in his choice of words when he began speaking out against those he believed were attacking him. As a man who prized his autistic identity, he despised the messaging of Autism Speaks, whose influence was unrivaled and whose puzzle-piece logo was everywhere he looked. After founding ASAN in 2006, Ne’eman began writing and speaking against the group’s “continued dehumanizing advertising,” accusing it of “encouraging a lesser value for autistic life.” In 2007, after the attempted murder of an autistic girl by her own mother, Ne’eman went so far as to charge that Autism Speaks was “morally complicit” in the crime. He linked the murder attempt to a recently released Autism Speaks video in which Alison Singer confessed to having days when she considered driving herself and her daughter off a bridge. Ne’eman made the “morally complicit” comment in a prepared statement before the federal Interagency Autism Coordinating Committee, on which Singer sat. The IACC censored those words from its online transcript of the session.
Ne’eman also opposed many of the avenues of scientific investigation Autism Speaks endorsed and funded. On one hand, he was not opposed to research “on issues related to the quality of life of autistic people.” He had nothing against epidemiological studies or the development of diagnostic tools that helped identify populations who should be counted as belonging on the spectrum. He also favored research on more innovative assistive technology for people whose autistic traits caused them difficulty functioning, such as tools to help the non-speaking to communicate. But Ne’eman adamantly opposed further development of any methodologies that, in his view, forced people to stifle their autistic personalities in order to seem more “normal.” This included some drug development, and it definitely included Lovaas-style ABA. “To pursue normalization” by use of such methods, Ne’eman wrote, “forces us into a struggle against ourselves.” Above all, Ne’eman, and the neurodiversity movement as a whole, rejected any scientific endeavor whose ultimate target was finding a “cure” for autism.
But by 2007, a search for a cure was already the well-established thrust of much of the research already under way. In labs from New York’s Mount Sinai Hospital and Columbia University to the National Institutes of Health outside Washington and the Mind Institute in Davis, California, autism research was now so hot that it seemed virtually any study in any field improved its chances for funding by having the word “autism” appear in the grant proposal. The word “cure” was not mentioned, but then, it did not have to be.
Some fascinating discoveries and some amazing developments had been made in the decade or so since parent pressure had kick-started the process. Scientists had uncovered all kinds of ways in which people with autism were organically distinctive. They had found that actual brain size in kids with autism is 20 percent larger than in other children; that dopamine, the brain chemical that spikes in response to pleasure, does not flow as usual in autistic brains in response to hearing a human voice; and that when an autistic person is asked to perform a visual task with an emotional component, such as remembering a face, blood flow to the front and rear parts of the brain appears to be out of sync. Eye-tracking technology was developed that could identify babies as young as two months old who were at risk of developing autism. And a discovery was made about the sleep of autistic children: rapid eye movement—which tends to coincide with dreaming—occurs one-third less often than in other kids. It was also established that children with autism get an hour less sleep per night than other children. It was found that older fathers have an increased chance of having a child with autism, and that mothers who take folic acid before becoming pregnant show a 40 percent reduced risk of having a child with autism. Prenatal studies were also launched based on the finding that the risk of autism was higher when mothers fell ill during the first trimester of pregnancy.
Leads came from some unexpected areas, one of which involved fevers. Parents had been reporting a “fever effect” since at least the 1980s, where their kids’ autistic symptoms improved dramatically when they were experiencing high fevers. This became the starting point for several fever studies. Meanwhile, certain substances were found to mitigate symptoms. Melatonin helped some children sleep better. Risperidone and other antipsychotics helped reduce repetitive and hyperactive behaviors in some children.
As with behaviorism, the biomedical researchers were also learning by studying nonhumans. At the National Institutes of Health, the DNA of mice was being modified by researcher Jacqueline Crawley to produce new rodents exhibiting a theoretical “mouse version” of autism. The result was mice who were excessively antisocial, or obsessively given to repetitive self-grooming. Far from perfect analogies for the human organism, these “transgenic” mice did, however, allow for experiments involving injections of chemicals. The neural wiring of the fruit fly also yielded new insights when researchers found that these insects, when faced with overwhelmingly intense odors, have the ability to dial back their sensitivity—almost tuning the odor out—something some people with autism seem unable to do in the face of loud noises, bright lights, or tactile experiences that they find unpleasant.
As ingenious and wide-ranging as these findings and investigations were, nearly all of them were motivated by the same end goal—and the one that troubled the neurodiversity movement: preventing autism before it happened, or making it go away if it did.
That was why, in Ne’eman’s opinion, nothing was more terrifying than the search under way to unravel autism’s complex genetic underpinnings. Enormous effort was being made to identify “risk” genes, which would become targets for future treatment if, as expected, the gene research ultimately pointed to multiple paths to autism, or to many different autisms. But Ne’eman dreaded the day any of those became so clearly marked that a genetic test for autism would result from it. Then, wrote Ne’eman, “the most likely form of prevention would be that of eugenic abortion.” He pointed out that this was already happening with Down syndrome, where a prenatal test had been available since the 1980s, after which 92 percent of pregnancies tha
t tested positive for the chromosomal abnormality responsible for Down’s were being terminated across a range of countries, including the United States, the UK, New Zealand, France, and Singapore. “Most of us on the autism spectrum do not wake up in the morning,” he wrote, “and wish that we had never been born.”
That was not much different from what Temple Grandin had said to Oliver Sacks in The New Yorker years earlier. “If I could snap my fingers and be nonautistic, I would not,” she said in that 1993 interview. “Autism is part of what I am.” But Grandin had always charmed the audience of autism parents, while Ne’eman, like Sinclair before him, turned a large part of that audience off. For many mothers and fathers, it was galling to be lectured to by perfectly verbal, automobile-driving, college-attending grown-ups whose supposed autism-produced disability appeared minuscule in comparison to what their own kids were facing.
Of course, no parent took issue with the part of Ne’eman’s argument that said that people on the spectrum were owed respect, dignity, safety, and as much say over their own lives as possible—values that society had embraced, at least in theory, when it shut down the mental institutions a quarter of a century earlier. But it was neurodiversity’s more radical proposition—that a child with severe autism was not, in some fashion, sick—that was not getting much of a hearing as of 2007. Many parents who were alienated by Ne’eman questioned whether he even had autism—of any kind. Some, however, thought they recognized such a dramatic failure of empathy in his pronouncements about them as parents, or at least a failure of tact, that they took it as evidence that he did, after all, match the stereotype of Asperger’s. Either way, he was a just a college kid—easy to ignore.