For clinicians in the trenches, the more exuberant efforts to link autism with genius can be exasperating. “Do blind people hear music more exquisitely than people with sight?” asks Siegel. “We don’t have any neurophysiological evidence that they do.” Similarly, most people with Asperger’s have average intelligence, with high IQs the exception. And many with ASD, and the families who care for them, suffer terribly. “There clearly are people with ASD who marry,” says Catherine Lord, director of the Center for Autism and the Developing Brain at Weill Cornell Medical College, “but they are not many. More and more people with ASD have jobs, but the majority are underemployed, or have jobs that don’t use their capabilities as much as possible. So these references to Einstein and Jefferson are not helpful.”
At 6 p.m. on a recent Wednesday, in a carpeted rent-by-the-hour room in a sixteenth-floor conference center near Penn Station, some 25 people have gathered for the monthly meeting of a Manhattan Asperger’s support group.
It’s a largely male, mostly white group, ranging from a teenager to people in their sixties. They seem afflicted, or visibly off, to different degrees. Some appear to be straight-up NTs. Some, shorts hiked high, look like central-casting nerds. A handful have strange affects: A young Orthodox Jewish man in his late twenties smiles to himself, and another young man holds his hands near his chest, silent and fidgeting. Many, though, are smiling and socializing. “I like your forest shirt,” one man says to a taciturn man named Gabe, who wears a green polo shirt patterned with trees.
Karl, a former engineer who runs the group for the Global Regional Asperger Syndrome Partnership (grasp), begins the meeting by having everyone in the room introduce himself: first name, diagnosis, employment and relationship status. As they speak, Karl chimes in occasionally, speaking in a distinctly enunciated, arrhythmic way. For a lot of the people here, Asperger’s isn’t their only problem. “Autism, borderline-personality disorder, depression, diabetes,” one person says. Another person says: “1997, self-diagnosed; 1998, clinically diagnosed.” A graphic designer named David got an online diagnosis after his six-and-a-half-year marriage crumbled: “My husband always said I had something.” Nearly everyone is single, and a good number live with their parents.
A British woman, talking about a popular Asperger’s memoir, John Elder Robison’s Look Me in the Eye, starts crying, saying what a relief it had been to read, flooding her with memories of her own experiences; she’d always thought she was “daft.” The room fills with a chorus of sympathetic voices (“It’s okay to cry,” another woman reassures her). These don’t look like people seeking an excuse, or imagining a set of problems, or lacking in feeling, or just being eccentric. They seem to see the world through a particular lens, to have significant if narrow competencies, to be really struggling.
And their world is about to get shaken up. Next May, the fifth edition of the DSM is to be published, and the APA has proposed to eliminate the Asperger’s diagnosis, folding it, as well as PDD-NOS, into the broader new all-purpose bucket of autism spectrum disorder. The thinking is that Asperger’s isn’t scientifically distinguishable from autism, and that a single diagnosis may help to combat the epidemic that is more diagnostic than real. But the debate has been fractious. Fred Volkmar, who’d headed the committee for DSM-IV, quit the DSM-5 committee, and has been vocal about the likelihood that the redrawn map of who’s on the spectrum will cause a lot of people who currently have diagnoses to lose them. A report previewed in January suggested that as few as 45 percent of people who currently have Asperger’s or PDD-NOS diagnoses will retain them, though a study in The American Journal of Psychiatry, published earlier this month, put the number closer to 90 percent.
For the people in this room, Asperger’s is an identity as much as a diagnosis, and as much as this is a specialists’ debate with real-world implications (insurance, school services), it’s also an existential koan: If you lose your Asperger’s diagnosis, do you not have Asperger’s? Did you ever? grasp will continue to exist, but Karl tells the room that the AS may change to standing for Autism Spectrum, and Michael Carley, the head of grasp, has written a book titled The Last Memoir of Asperger’s Syndrome. “I think I would say, if the term Asperger’s helps you describe yourself and gives you community, use it,” Catherine Lord, who is on the DSM-5 committee, tells me. “The fact that we’re changing the medical diagnosis … Most people who use Asperger’s would not have met the DSM-IV criteria, so they’re using the term already as a colloquial term. And that’s fine. I don’t think anyone wants to take that away, it just isn’t a medical diagnosis. If someone needs someone to cut them slack, whether they have Asperger’s or not, that’s something they need to negotiate with their spouse.”
Among the members of tonight’s support group, people fall on both sides of the debate. “My belief,” says an older man named Allen, “is it’s impossible to distinguish Asperger’s from high-functioning autism. It has more to do with where you get a diagnosis than the scientific criteria.”
“What will it do for people who already have a diagnosis?” Gabe, in the green forest shirt, asks. “Where will we be? Anybody who agrees with me that Asperger’s shouldn’t be clumped under ASD, say ‘No.’ ”
There are lots of “No”s. Someone mentions that the New York State Assembly is considering passing a law to exempt the state from the DSM-5.
“Yes!” Gabe says, doing a closed-fist power salute. “We can’t just throw up our hands. What about Aspies and generations to come?”
“Woody Allen still makes movies about neurotics,” Allen points out.
“Let’s keep calling ourselves Aspies,” Gabe says.
“Oh, hellz yes,” says a guy in back.