Guideline Changes Have Asperger's Community on Edge

Psychiatric manual will fold it into autism spectrum disorders, leaving many unsure about getting needed services

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By Lisa Esposito
HealthDay Reporter

THURSDAY, April 18 (HealthDay News) -- People with Asperger's syndrome -- mild autism with normal or sometimes superior verbal ability and intelligence -- are at a crossroads: Their diagnosis is about to disappear.

In 1994, Asperger's was recognized as its own disorder in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-4). For some people, realizing that they fit into the Asperger's diagnosis was a "eureka" moment of sorts.

In mid-May, however, the American Psychiatric Association (APA) will unveil the latest edition of the diagnostic manual. In the DSM-5, the Asperger's term will not exist -- and many people with Asperger's are upset.

Hallmark symptoms -- significant impairment in work and social functioning, inability to understand nonverbal communication, repetitive behaviors and restricted routines -- will be folded into the term "autism spectrum disorders," ranging from the mildest to most severe autism.

The APA says that with the change, diagnosis will become more accurate and consistent.

"The intent was that it would make diagnosis more straightforward," said Catherine Lord, a member of the APA group that updated the diagnoses. "They're not necessarily different disorders because, at least biologically, nobody can differentiate Asperger's from autism."

"One of the good things that the idea of Asperger's syndrome did was make people aware that somebody can have quite significant social deficits but be a very intelligent person," said Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. "The goal of our committee is not to lose those people but to say they can be recognized within this broader concept of autism spectrum disorders."

But many with Asperger's believe they will fall off the spectrum and lose access to needed services. And they fear that their very identity is at stake.

Some people with Asperger's syndrome "formed their first identity of normality within the group," said Liane Holliday Willey, senior editor of the Autism Spectrum Quarterly and an autism consultant in Grand Rapids, Mich. She has Asperger's.

So does Brian King, an Illinois-based relationship coach and licensed clinical social worker. With the change, he said, "people who have embraced the Asperger's label are now thinking, 'I have an Asperger's support group. I call myself an Aspie. If you take that from me, who am I?'"

It's not clear how many people have Asperger's. Estimates vary anywhere from three in every 1,000 to one in every 200 people. But experts say the impact of the change will be widespread.

In the United States, DSM diagnoses are closely aligned with health insurance billing. Internationally, governments and social agencies use the manual to approve funding for services and research.

"[The DSM] has repercussions throughout the world, especially the English-speaking world," said Tony Attwood, an adjunct professor at the Minds & Hearts clinic in Brisbane, Australia.

"I think the banning of the term Asperger's syndrome is too premature," Attwood said. "They're very upset [in Australia]. So they have to explain to, for example, employers, that they are now to be called autistic and have mild autism."

In October, APA member Lord published a study that found only about 10 percent of children would lose their autism diagnosis under the new criteria. Attwood, however, said estimates of people who will lose funding eligibility range anywhere from 10 percent to 75 percent.

King said people who are not obviously struggling may lose out.

"If there is some kid in college who's an intellectual juggernaut -- they can pass socially, who can think his or her way through social situations -- but is so in need of services on campus, in need of accommodations, that's the person I'm worried about," King said. "The one who, underneath it all, is suffering, but is so good at passing that they're off the radar of a lot of diagnosticians."

For children with Asperger's, early intervention, which includes parent training, is considered ideal. One question is whether early intervention will be easier or harder to obtain under the new criteria.