In a Different Key: The Story of Autism (74 page)

It was the birth of a new philosophy called “neurodiversity,” which was welcomed by many in the autism community. But at the same time, some autism parents in that community discovered a new adversary in the arena: people with autism themselves.

45

NEURODIVERSITY

D
uring the second week of december 2007, word spread through certain Internet sites of a new ad campaign, already hitting billboards and soon to appear in the pages of
Newsweek
and
New York
magazine. The content, in the view of many, was outrageous, although the ads comprised nothing but words on a page. But those who saw images of the ads, usually as an attachment forwarded by an upset friend or acquaintance, instantly grasped what they referred to. A ransom note. The kind kidnappers type out on beat-up, untraceable old typewriters. One read:

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.

Autism

It was the launch date of New York University Child Study Center’s long-planned “Ransom Notes” campaign. An ad agency had a whole series of other make-believe ransom letters ready to go, including one penned in block letters:
WE HAVE YOUR SON. WE ARE DESTROYING HIS ABILITY FOR SOCIAL INTERACTION.
This note was signed:
ASPERGER’S SYNDROME.

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.

—

T
HE 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.

—

F
OR 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. Dawson’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.

—

A
RI
N
E
’
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.