Asperger's parents resist name change

Marianne Kaplan and her son Adam, who has Asperger's syndrome. 'There's a huge difference between people with Asperger's syndrome and people with autism.'

Marianne Kaplan doesn't want to see Asperger's syndrome disappear – not in name, at least. But if a proposal from those revising psychiatry's diagnostic manual succeeds, it will be cut from the new edition and folded into the broader diagnosis of “autism spectrum disorder."

“That's ridiculous," says Ms. Kaplan, director of The Boy Inside , a documentary about her son growing up with Asperger's. “There's a huge difference between people with Asperger's syndrome and people with autism."

Asperger's syndrome, often described as “high-functioning autism," entered the Diagnostic and Statistical Manual of Mental Disorders in 1994. Like those with autism, people with Asperger's often find it difficult to express their feelings and need to follow schedules rigidly.

But unlike classic autism, children with Asperger's usually do not show signs of major cognitive impairment. While much has been done to increase understanding of Asperger's syndrome as a unique condition, those who are revising the fifth edition of the DSM, due out in 2012, say it should be eliminated for the sake of clarity.

But Asperger's advocates say dropping the diagnosis will only create confusion.

“I don't think that it's a good idea," says Gene Semchych, president of Asperger Manitoba Inc., a non-profit organization dedicated to raising awareness of the syndrome. “My fear is that if … the label of Asperger's is not recognized under the DSM, then it would be very easy for the people with Asperger's syndrome to fall between the cracks as they did before."

While those with Asperger's syndrome and autism often share a bundle of similar traits, such as an impaired ability to socialize, allowing Asperger's to disappear, at least as a diagnosis, might hurt the treatment of those with the syndrome.

“They have unique needs and unique characteristics that many others that are on the spectrum don't have," Mr. Semchych says.

If anything, psychiatrists and other mental-health experts should be creating more, not fewer, gradations in order to better understand the autism spectrum, says Jeff Cohen, author of The Asperger Parent .

“The idea that we're saying it's all one thing could be a problem," he says.

Not everyone is unhappy with the proposed change. The broader diagnosis of ASD may encourage a better understanding of the condition, says Leon Sloman, who runs a long-established clinic for children with autism spectrum disorders at the Centre for Addiction and Mental Health in Toronto.

“Some people with Asperger's may like to make a distinction between themselves and people with autism, but I think that the new system is realistic," Dr. Sloman says. “I think there's a bit of a prejudice in the psychiatric community against the condition because some people say it's not a real illness."

People with Asperger's syndrome may be socially awkward. But they can also be intellectually gifted, and often develop a detailed knowledge in narrow fields of interest.

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