In a Different Key: The Story of Autism (75 page)

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 that 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.

Then those “Ransom Notes” billboards began to appear.

—

W
E 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.

—

I
T 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.