Asperger’s, Overdiagnosed, Ill Defined, May Not Be a Syndrome Much Longer
What are we talking about when we talk about Asperger’s syndrome?
It’s a reasonable question to ask in the midst of the furor over the American Psychiatric Association’s proposed changes to the way autism spectrum disorders are diagnosed. According to the plan, when the DSM V—the fifth edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders, the profession’s standard diagnostic reference for mental disorders—is published next year, it will not contain Asperger’s syndrome at all. Instead, all diagnoses of autism—of which Asperger’s is currently considered a subset—will be collapsed together onto one spectrum, and rated in gradations from mild to severe.
For all its clinical and cultural resonance, Asperger’s syndrome is still only a recent addition to the American diagnostic vocabulary. It took an unusually circuitous route to get here—the result of historical circumstance—and in the 18 years since it arrived, no one has been able to agree on what it is.
Asperger’s syndrome is named for Hans Asperger, an Austrian physician who lived in Vienna in the '40s. In a single paper, which he published in German in 1944, Asperger described certain behaviors he’d seen in a few young boys—his “little professors”—and suggested them as prototypes for a psychiatric category.
By coincidence, one year earlier, another physician, Leo Kanner, a German refugee then living in Baltimore, had published a paper describing what is now known as Kanner’s autism, or classical autistic disorder.
Because Asperger’s timing so closely shadowed Kanner’s, and because Asperger wrote in German, and wrote from Austria during World War II, his work did not initially permeate American thinking.
It wasn’t until the 1980s, when British psychiatrist Lorna Wing translated Asperger’s original paper into English, that the idea of this syndrome took hold in the United States.
Wing’s phrase for describing the essence of the syndrome has become famous: Asperger's kids, she wrote, are “active but odd.”
They don’t have the language or cognitive impairments seen in autistic disorder, but they do have the social handicap—the inability to relate normally to others—that also characterizes autistic disorder. Many doctors feel that the introduction of Asperger’s syndrome enriched clinical thinking, adding something that had not been available before.
Rachel Klein, a child psychiatrist at New York University’s child-study center, describes a patient she saw for two years before realizing that what she was looking at was Asperger’s syndrome.
The child, who was 9 when Klein started treating him, appeared to have attention issues, she says, yet “there was something very strange about him. He would walk into my office, shake my hand, say, 'Hello, Dr. Klein, how are you?' Pseudo-adult. Mechanical. Stilted.”
His only friend lived nearby in New Jersey. One day, he went outside to borrow a bicycle. There’d been a car accident, and his friend had been run over and was lying in the street. “He walked over to where his friend was lying and asked him, ‘Can I borrow your bicycle?’”
“He was completely matter-of-fact about it—he wasn’t being cruel or vicious, just totally self-absorbed,” Klein says. “This was when I realized this was Asperger’s.”
Yet in those days, in the early 1990s, as American psychiatry debated over whether to make Asperger’s an official diagnosis, Klein says, “we couldn’t agree on what was the essence of the condition. We could have done better, but we didn’t, so here we are.”
Klein was a member of the DSM IV committee on childhood disorders (DSM IV was published in 1994). The group carried out field trials, looking to see, before the diagnosis became official, if it did in fact capture something reliably distinct from autistic disorder.
Because the field trials came back with results indicating that Asperger’s syndrome was indeed a separate phenomenon from autistic disorder, the DSM wound up printing it as a diagnosis.
But there was resistance.
There were the usual reasons for conservatism—the potential for disruption that changing any diagnosis raises. But there were other, more hidden reasons for the resistance as well. Fred Volkmar, the director of the Yale Child Study Center, who was the head of the DSM IV working group, says he sensed there were additional obstacles, but he couldn’t immediately identify them.
It turned out, Volkmar says, that there was the question: “What was Asperger doing during the war? Asperger published in German in Austria during World War II. Do you follow what they’re saying?”
Volkmar had stumbled on a tacit belief—held, he says, by some members of the American Psychiatric Association—that Asperger had been a Nazi. (This bit of history is not well known. No other psychiatrist who spoke to The Daily Beast could confirm that he or she was familiar with it.) Volkmar says he investigated the possibility of Asperger’s association with Nazism and was ultimately convinced there was no truth to it.
Whatever the sources of conflict within the American Psychiatric Association, they were resolved, and Asperger’s syndrome was included for the first time in the DSM IV.
But even after publication, the nature of the disorder remained far from clear.
Many doctors believe Asperger’s is significantly overdiagnosed—so much so that it might singlehandedly account for why there has been such a dramatic uptick in the total number of autism-spectrum diagnoses handed out each year.
Bryna Siegel, a child psychiatrist at the University of California, San Francisco, was a member of the DSM IV working group. She says she “undiagnoses” Asperger’s far more frequently than she diagnoses it. For every 10 children who come to see her with a diagnosis of Asperger’s, she “undiagnoses” nine.
Siegel believes that one reason why Asperger’s has become so widely applied is the appealing meaninglessness of its name.
“I think part of the proliferation of the Asperger’s diagnosis is that if you say that a kid has oppositional defiant disorder, and especially if you say that about a normally intelligent upper-middle-class kid, parents don’t like to use the word 'oppositional' and they don’t like to use the word 'defiant' and they don’t like to use the word 'disorder.' And ‘Asperger’s’ just sounds so much more neutral. It doesn’t have any connotations … It’s a name, it’s not a descriptive term.”
Peter Szatmari, another child psychiatrist who was part of the DSM IV effort, also believes Asperger’s has been stretched too far. “I remove the diagnosis about 50 percent of the time,” he says.
Szatmari does not bemoan the removal of the Asperger’s diagnosis from the DSM. He considers the lack of consensus among clinicians clear evidence for its failure.
In fact, he even struggles to clarify to his patients and their family members exactly what it is they’re dealing with.
“People ask me if Asperger’s is the same or different as high-functioning autism,” he reports. “And I say, ‘Yes.’”
The confusion extends outside of patient-doctor conversations. At the height of the Silicon Valley tech bubble, Wired magazine published a questionnaire developed by autism expert Simon Baron-Cohen, a self-report test for Asperger’s syndrome.
Siegel, whose office is in San Francisco, recalls that the questionnaire caused such a stir among the techie set that she was flooded with responses.
"I ended up telling my intake coordinator, 'If they leave you the number of their secretary to call back, do not call them back,'” she says. “If they have a secretary, they do not have Asperger’s syndrome.”