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Diagnosis changes, but Asperger identity endures

Published: Monday, June 24 2013 10:40 a.m. MDT

A screenshot of dad-blogger Tom Hibben's blog, Adventures in Asperger's.


Jared Stewart’s standard tongue-in-cheek explanation for his many eccentricities, even today, is that he was born on an island in Alaska. That is not an actual diagnosis, he admits, "but it should be."

For years, he had no idea what made him different. He just learned to live with it. It was only after graduating from college and launching his teaching career that he realized he was an Alaskan with Asperger’s.

Stewart had the American Psychiatric Association to thank for his epiphany. The APA had inserted Asperger’s into its diagnostic manual in 1994, in the version known as DSM-IV. Before that, his condition didn’t even “exist.”

But when DSM-V was launched last month after years of controversy, Asperger’s was conspicuously missing. Therapists using the new manual will have to plug their patient somewhere along the “autism spectrum.”

Some in the Asperger's community resent the change and resist being grouped with Autism generally. People with Asperger’s share many symptoms with classic autism, but they do not have language or other developmental challenges and are often of high intelligence.

Simply put, by the time the APA decided to nix the diagnosis, Asperger’s had cachet, while autism had stigma. The APA was hammered with opposition to the move. But others, including many in the Asperger’s community, see the change as appropriate, necessary, even liberating.

A crowded spectrum

That spectrum is getting comparatively crowded. The Centers for Disease Control reports that 2 percent of children by 2012 were reported by parents as having some form of autism, up from 1.16 percent in 2007. The CDC report postulates that most of the leap results from more aggressive diagnoses, and notes that much of the shift reflects milder cases — including Asperger’s. Those numbers should begin to diminish under the new, more restrictive regime.

When the psychiatric profession first recognized Asperger's syndrome in 1994, it placed it under a heading of Pervasive Developmental Disorders, generally known as "the autism spectrum." The other two disorders under the same grouping are classic Autism and "Pervasive Developmental Disorders Not Otherwise Specified.”

In the new manual, the label PDD-NOS no longer exists: all subcategories are now replaced by the “autism spectrum,” and somewhere along that spectrum are a wide range of challenges that have much in common but differ widely in details and degree of impairment.

That is, if impairment is even the appropriate term at the high-functioning end. Some prefer to talk about differences rather than defects.

A quirky kid

As a child, Stewart, 38, from Orem, Utah, would pace around the house and talk at length on subjects that interested him. "I could not have cared less if anyone was listening to me or cared what I was saying," he said. Mostly, he talked about dinosaurs. The family would nod indulgently.

He also generally didn't play with others. He would set up his toys and play by himself, because, he said, "everyone else played wrong.”

Stewart’s senses were a keen edge. He was highly distractible and used white noise from the radio to sleep or study. Still does. Taking a shower to him felt "ticklish and pokey," and he avoided it when he could as a youth. Those diminished with time, but he is still sensitive to temperature change.

"I knew that there was something going on, that I wasn't responding to the world the way to their people did, and that other people didn't see the world the way I did," Stewart said. But it wasn't until he’d been married and working for some time that he realized he had Asperger's syndrome.

System building

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