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Autism Spectrum: Are You On It?

“I was totally awkward,” Nugent says of his younger years, “but awkward in a totally normal way. I was an aspiring hipster in a bad vintage polo shirt and a Blur haircut talking about the understanding of literature I had in fifth grade. So, really annoying probably, but not on the autism spectrum.”

Other than several years’ resentment toward his mother, who was profusely apologetic, and free ammo for opponents (“A girlfriend who wanted to win an argument would say, ‘Maybe your mom was right’ ”), Nugent seems to have survived the episode unscathed, and he’s become something of a student of the modern conflation of social awkwardness with autism. In his nonfiction American Nerd: The Story of My People, he included a chart that matched up the diagnostic criteria for Asperger’s with a list of classic nerd traits (social phobias, rule-bound speech, etc.). “If you look at certain nerd characters, like Jerry Lewis in The Nutty Professor,” Nugent says, “he’s basically acting like someone with Asperger’s or mild autism. He’s spastic, doesn’t understand social cues, is a savant.” More recently, Nugent wrote an op-ed in the Times lamenting the overdiagnosis of Asperger’s.

Not that Nugent himself is always rigorous in applying the label to others. “When I get mad at someone I have a retail interaction with, like if I’m attempting to buy a shirt from someone who doesn’t understand what I’m saying, later I’ll say, ‘That guy was kind of Asperger’s-y. It means: not sensitive to my needs. I’m guilty of using the term in a sloppy vernacular way like everyone else.”

The vagueness of the border between able and disabled has made Asperger’s controversial from the time it was coined as a diagnosis, in 1981, by English psychiatrist Lorna Wing. Wing named it after Hans Asperger, a Viennese pediatrician who in a 1944 paper had described four boys as sharing “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.” He called them “little professors.” (Asperger himself seems to have been a bit spectrum-y as a child, endlessly reciting the verse of Austrian poet Franz Grill­parzer, to his classmates’ dismay.) By 1990, Asperger’s syndrome was in common usage among clinicians as a term to describe a distinct verbal subset of autistics. But exactly how Asperger’s made it into the DSM-IV, published in 1994, remains veiled in mystery.

The history of psychiatry is a long fade-in, a glacial zoom toward granularity. Autism emerged from a conceptual catchall called “childhood schizophrenia,” and Asperger’s, in turn, was carved out of autism. But the more fine-grained the distinctions, the more they threaten to overlap and blur into each other. The community of clinicians specializing in developmental neurology generally viewed DSM-IIIR, which had been published in 1987, as wildly overinclusive. It had only two categories of spectrum disorders—autism and the kitchen-sink PDD-NOS (pervasive developmental disorder-not otherwise specified)—and its imprecision was seen as having led to an alarming increase in the number of diagnoses.

The overarching agenda of DSM-IV, then, was to be more specific and to raise the bar for diagnosis. By the early nineties, the committee tasked with revising the taxonomy was focusing on whether Asperger’s was fundamentally different from high-­functioning autism. But their work was conscribed to hashing out the pros and cons of creating a separate diagnosis for Asperger’s and didn’t extend to making a decision or establishing what the diagnostic criteria would be. That work would fall to nonspecialist higher-ups at the APA. Even as the committee finished several years’ work, its members had no idea whether Asperger’s would make it into the big book. “It was like the election of the pope,” says Peter Szatmari, a leading Canadian researcher who sat on the working group. “The message went upstairs, and we waited around for smoke to come out of the Vatican. And there it was.”

The science writers hired to draft the DSM-IV text inexplicably dropped one of the criteria the committee had agreed distinguished Asperger’s: gross motor clumsiness. And, arbitrarily, they decided that the criteria for Asperger’s would be the same as for autism, with simply a different number of criteria needing to be met to qualify. “Asperger’s got put in at the last minute,” recalls working-group chairman Fred Volkmar, head of child psychiatry at the Yale–New Haven Children’s Hospital, “with a lot of tweaking of it by powers on high … There’s so much of a rush to get the finished book done and copyedited and out. Things happen.” Volkmar says that for the PDD-NOS diagnosis, a copy editor who happened not to like an “and” replaced it with “or,” a seemingly tiny change that significantly expanded the diagnosis.