The Book of Woe: The DSM and the Unmaking of Psychiatry (21 page)

But, Wing said, this didn’t mean that Asperger’s syndrome should go unrecognized. A child who talks endlessly about the interstate highway system and nothing else, whose striving to attract people only drives them away, who is tone deaf to the music of human interaction and yet wishes to sing along: this is not someone who should be overlooked or simply dismissed as a little bit eccentric, especially not when there are a lot of such children. For them, Wing wrote, “
the term is helpful
⁹
.” It can be used with parents and teachers and bosses “who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal.” It can “help to convince the people concerned that there is a real problem . . . needing careful management and education.” Even if Asperger’s was only a high-functioning variant of autism, Wing suggested, and even if it was, strictly speaking,
not
a separate disorder, still it deserved its own label.

The argument that pragmatics should trump principle proved persuasive to the psychiatrists fashioning the International Classification of Diseases. When the ICD-10 came out in 1992, it included Asperger’s syndrome among the pervasive developmental disorders. This forced the APA’s hand: to achieve the goal of harmonization with the ICD, the DSM-IV task force had to at least consider Asperger’s for inclusion. “We knew the question was there,” said Volkmar, “so we were going to look.”

Seventeen years later Volkmar now heads the Child Study Center at Yale. He’s a friendly man with a gentle voice and a brushy moustache on a jolly rubber face that makes people of a certain age remember Captain Kangaroo. He’s wearing two pairs of glasses—one on his nose, one on his pate at the ready for reading. It’s not clear if he does this for efficiency’s sake, or just so he won’t lose track of their whereabouts.

Volkmar says he started out uncertain about Asperger’s. “I had seen a couple of cases that corresponded with the description, but I was not pro or con,” he told me. A literature review and a meta-analysis carried the diagnosis across the bar Frances and Pincus had erected, and the next step was to draft criteria and try them out in field trials. Volkmar recruited 125 clinicians at five sites. They started with patients who seemed likely to get an autism diagnosis and sorted them according to the proposed criteria.
Of the nearly one thousand subjects
¹⁰
tested, fifty-one turned out to qualify for the Asperger’s diagnosis.

“This was totally unanticipated on my part,” says Volkmar. But, especially because each diagnosis was confirmed by a second rater, the unexpectedly high number convinced him that it was possible to tell these kids apart reliably—or, in other words, that they were suffering from something distinct from Pervasive Developmental Disorder NOS and Infantile Autism, the labels that would most likely be applied. Even if it was possible that this was only another line in the sand, the statistics were there to prove that it could be drawn accurately and that these kids needed their own section of the beach. Volkmar pushed for Asperger’s to be anointed as an official disorder.

Volkmar had to fight for his proposal. He had to overcome the DSM-IV conservatism, which he describes, only half joking, as a “tendency [among work group members] to be on the autism spectrum and not like change.” As he put it, “the APA would like not to even have a child section, so they weren’t eager to make it bigger by even one diagnosis.” He had to flog his evidence—fifty-one cases may have been “the biggest sample that anyone since Asperger had ever pulled together,” but it was still a small number. He kept hearing that it would be consigned to the Appendix, or, as he calls it, the “elephant burial ground,” and he kept pushing for it to be spared that fate.

There was one last obstacle—one that had nothing to do with the evidence, and of which he was unaware until “someone took me aside and explained”: the name of the proposed disorder. The APA was opposed to eponyms, favoring instead plain descriptive language, and this particular name presented a thorny problem. “There were rumors that Asperger had been a Nazi,” Volkmar said. People were wary of a diagnosis named for (and first proposed by) a man who sorted children in Nazi Germany according to their pathologies.

Volkmar called Lorna Wing. “Oh my God, no,” she told him. “He was a religious man.” The reassurance was only secondhand, and it didn’t entirely make sense, but when he passed it along, the worries about the name were forgotten. Asperger’s syndrome was one of only two entirely new diagnoses—out of ninety-four that were proposed for DSM-IV—to make the cut.

•   •   •

Six years later, in June 2000,
The New York Times Magazine
ran “
The Little Professor Syndrome
¹¹
,” a long feature by Lawrence Osborne about Asperger’s syndrome. Experts described the symptoms. A school director told Osborne that “they simply don’t understand social games.” A parent called them “perfect counterfeit bills,” convincing facsimiles of normal children until they tried to engage others. Fred Volkmar weighed in, saying that “their social interactions are a disaster.”

But Osborne had some good news to report. Although, as the school director said, “everything has to be taught to them,” it was proving possible to do that. In classrooms, support groups, and doctors’ offices, Asperger’s patients were learning how to negotiate the neurotypical world. A teacher demonstrated how her students had memorized facial expressions so they could read other people’s signals. With techniques like this, according to Osborne, “Asperger’s children can at least learn to imitate social behavior that other kids learn intuitively.” Like Frankenstein’s monster observing human life through a window, they were forced to watch the rest of us from a distance. But unlike the monster, and as Hans Asperger had predicted, they could learn how to approximate what normal people do.

One of Osborne’s readers was Barbara Wiechmann, a Brooklyn office manager and playwright. She’d been worried about her son, who was then four, for at least two years. He’d been slow to talk and walk, and, even for his age, seemed terribly clumsy. He didn’t exactly play with his toys. He arranged them instead, sorting rather than manipulating them in imaginative scenarios. He lined up his blocks neatly on his windowsill, arranged by color, and stacked dog food cans into a neat, perfect pyramid. For bedtime reading, he rejected
Goodnight Moon
or any of the other standbys, insisting instead on the Smithsonian’s field guide to mushrooms, which he’d memorized by the time he was four.

Wiechmann showed Osborne’s article to her husband, Michael Carley, and told him she thought their son was one of the little professors. Carley wasn’t so sure. “
Some things made sense
¹²
, others didn’t,” he said. But he agreed to have their son tested and continued to read up on the subject. Before the appointment, he went to Cabo San Lucas for a quick surfing vacation from his job with an NGO that was implementing a United Nations drinking water development project in Iraq. “
I . . . have yet to stand successfully
¹³
on a surfboard,” Carley later wrote in a memoir, “but I’ve never cared. Water is the only arena where I have felt physically graceful.”

His ungainliness wasn’t the only limitation Carley was aware of on his trip. After a day of not surfing, he stopped in at a disco. He’s no more a dancer than a surfer, and in the crowd of tourists, he wrote later, he felt “like a ghost that no one saw.” That feeling was familiar enough, but, in the light of what he’d learned about Asperger’s since he read the
New York Times
Magazine
article, it took on a new meaning.

As I watched the dictionaries of nonverbal communication flowing back and forth, I was hit fully, finally, that what separated me from them wasn’t cultural. It never had been. It wasn’t intellectual. It never had been. It was bigger than that.

At that moment, one month before the confirmation of a formal diagnosis, I knew. Staring into that sea of abandon . . . I knew. I realized I had Asperger’s syndrome.

A month after his return, and a week after his son received his diagnosis, Carley’s psychiatrist confirmed his revelation. With the official diagnosis came relief. “It meant I’m not an asshole. I’m just wired differently,” he says. “This is just how I process thoughts and experiences and emotions.”

Carley is sitting with his legs crossed under him on the bare wood floor of his sparsely furnished living room, free-associating about his nineteen-year-old single mother, his father who was killed in Vietnam, his “crazy dumb” gallivanting youth, his misadventures with cops on different continents, and the people he’s met along the way, who, he says, have been evenly divided on whether he’s a “tell-it-like-it-is guy” or a jerk. He talks fast, snapping his fingers for emphasis, and it’s easy to believe he had once wanted to be a playwright. He sure has a flair for drama.

That’s a skill Carley has put to a different use since he got his diagnosis. Shortly after his visit with the psychiatrist, he took over a loose network of Asperger’s support groups in New York, and in 2003, he used his NGO savvy and his forceful personality to wangle money from the Fund for Social Change and turn the network into GRASP, the Global and Regional Asperger Syndrome Partnership, the largest organization for adolescents and adults with Asperger’s. Like AANE, Nomi Kaim’s group, GRASP works to provide patients and their families with information and resources. But Carley has a larger agenda, captured in GRASP’s mission statement.

At GRASP we envision a world
¹⁴
where all individuals on the autism spectrum are respected, valued, and fairly represented; where appropriate supports and services are readily available to those in need; and where people on the spectrum are empowered to participate in policy and personal decisions that affect their lives.

Asperger’s syndrome, according to Carley, isn’t just a diagnostic label or a psychiatric disorder. It is a fundamental part of identity, not unlike race or sexual orientation. His is a civil rights crusade, a quest for cognitive pluralism.

Carley often slips into the language of identity politics as he describes his odyssey from getting his diagnosis to attending his first support group to becoming leader of GRASP. “Knowing that I had the same genes running through my veins as they did,” he says, remembering the first groups, “gave me the guts to open up and share that experience. And what’s the response? A room full of people saying, ‘I’ve been there, too.’ That’s biblical.”

As important as that experience was to him, his mission now is to make it unnecessary for others to go through it. “This is about us creating a more diverse atmosphere,” he told me. “Eventually, Asperger’s and autism are going to be thought of as natural extensions of the human condition and not illnesses. We won’t even need to separate them.”

That’s what GRASP is for. “We want to get rid of the shame,” he says, “so we’ve made a very concerted effort to change the iconography of Asperger’s”—from an affliction to a gift. And, he thinks, the proposal to eliminate the Asperger’s diagnosis in favor of a spectrum disorder is an opportunity to extend what Asperger’s patients have secured for themselves to the rest of the autism spectrum—including those much more severely impaired than he. This is an adventure he is eager to undertake, which is why he, along with about half the members of GRASP, is in favor of the change.

“I’m going to butt in here,” says his son, who has been sitting quietly beside me on the couch. He’s wearing a Minnesota Twins baseball cap, although he swears he’s a Red Sox fan. He has his father’s squat nose and downturned eyes as well as his diagnosis, but right now he wants to tell me about a way in which they are really not the same kind of person at all. “I’m sorry, but the way we’ve taken Asperger’s has been very different.”

Like many fifteen-year-olds, the younger Carley finds his father’s passions embarrassing. When his friends ask what his father does, he says, “I don’t want to be, like, ‘He works with Asperger’s.’” He looks at his father across the room. “I want the answer to be something like your old UN job.” He tells his father how mortifying it was when Carley took his son’s school principal to task over her policy of not disclosing students’ diagnoses. “I don’t want to be affiliated with it,” he says. “I’m running around with my friends. I don’t want to bring up that subject.” He turns to me. “It’s something for home. It’s something for me and my dad.” That, he explains, is why he wants me to call him CC instead of his real name.

Not that the diagnosis hadn’t helped CC. “If I didn’t have a diagnosis, I’d be totally clueless,” he says. He went to special schools; hung out with fellow Aspies; even had a little counseling; and learned, as his father likes to put it, to play the cards he was dealt.

“In seventh grade, I got the worst grades possible, and I was off the charts in eighth grade”—because, he says, his diagnosis gave him a motive for trying harder. “I have this thing on my back—Asperger’s syndrome. It’s like getting a high score on a video game. Like, let’s see how high I can go.”

But that’s all behind him now, CC says. His problems have been “ironed out.” He is in a mainstream school, where his friends don’t know about his diagnosis. His Asperger’s is in the background—a “huge achievement,” he tells me—and he wants to keep it there.

CC turns back to his father. “I know you hate this, and I would love it if everyone would accept it. But you know there are idiots in this world. They don’t look at how other people think. They don’t acknowledge any evidence. They just put it down.”

And this, he thinks, is only going to get worse if the diagnosis disappears in the DSM-5, and kids like him are suddenly considered autistic. “When you hear the word
autism
, you think of institutionalization, speech delay, diapers. It’s a scary word,” he says. “It’s going to make me want to be even more concealed.” CC turns to me. “Would
you
rather say you have Asperger’s or autism?”

The difference between father and son may only reflect a difference in their temperaments, whatever their similarities when it comes to Asperger’s. On the other hand, Michael knows what it is like to live without an explanation and the acceptance that comes with it, while CC doesn’t remember a time when he didn’t have the diagnosis. The disorder is so thoroughly intertwined with his sense of who he is that it is invisible to him. He has the luxury to forget about it, to carry on as if it weren’t there. He can see that he and others could lose this freedom if the DSM-5 proposal goes through, but he also doesn’t want to take to the streets to fight about it.