Families, Aspies don't want Asperger's diagnosis to go away

From CNN:

For Mary Calhoun Brown, the term "Asperger's" is crucial to conveying to schools that although her 15-year-old son has had social difficulties, he has a near-genius IQ and great speaking ability.

"If I call it 'autism,' that's going to raise a lot of red flags for people who don't know him," said Brown, author of the novel about autism "There Are No Words."

Both Brown and her son William are opposed to new guidelines being put forth by the American Psychiatric Association that would make Asperger's syndrome part of the autism spectrum disorders rather than a separate diagnosis. In the current edition of the Diagnostic and Statistical Manual, which helps mental health professionals identify specific conditions, it is not listed under autism. (Both are pictured.)

The revisions are being considered for the DSM's fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20.

The clustering of Asperger's and other developmental conditions with autism has generated a flurry of comments and concerns among people with the conditions, as well as parents.

The Asperger's Association of New England, a nonprofit organization with more than 3,000 members, has written a letter to the APA committee in charge of revising autism diagnoses explaining that Asperger's should remain separate, said Dania Jekel, the association's executive director. The group is currently trying to mobilize other organizations to speak out and do what they can to see that the diagnosis remains in the DSM V.

"This is their identity, which is really being taken away," Jekel said. "If everybody's sort of lumped together, we're going to lose that."

Brown cited rumors that such intellectual icons as Thomas Jefferson and Albert Einstein may have had Asperger's, which fuel the positive image that has been cultivated in reference to the condition.

"Autism tends to be defined as a deficit, and people with Asperger's see themselves as having an advantage in life," said Eileen Parker, 46, of Minneapolis, Minnesota, who has Asperger's. That is why the community is split over the DSM issue, she said. She personally agrees that Asperger's belongs under autism for scientific reasons.

Dr. Charles Raison, psychiatrist at Emory University, acknowledged that "autism" is a "frightening word," and that moving Asperger's under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.

"It may be there that there's some political fallout, but from a scientific point of view I think the use of these spectrum ideas is much closer to the underlying biology," he said.

Asperger's syndrome, which affects about two out of every 10,000 children, is characterized by poor social skills, physical clumsiness, and narrowly focused interests, according to the National Institutes of Health.

William's main problems still lie in relating to other people -- he has trouble picking up on nonverbal communication, with gauging the strength of a relationship and with asking people to do things.

"I still don't know how people work, and that's one of the things I'm interested in," he said. "I don't think I'll ever get over that."

Part of the rationale is that the term Asperger's has become too vague, and may currently prevent some children from receiving the assistance they need at schools that offer "autism" services and don't necessarily include them, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.

But William, who received his diagnosis at age 5, is worried about the opposite.

"I believe that if we take away 'Asperger's syndrome,' people will not know as easily what this child needs to excel in school and in life," he said. "For instance, someone who has high-functioning autism may have a learning disability, but someone with Asperger's may not."

Jekel is also concerned that people with Asperger's would be perceived as having "mild autism" and not qualify for appropriate support.

Parker, who runs the blog Inside the Autism Experience, only found out her condition had the name Asperger's four years ago, and the diagnosis opened her up to a world of helpful therapies she didn't know existed. But she said the symptoms resemble autism characteristics, and that the conditions are part of the same continuum.

William said he would feel comfortable calling himself a "high-functioning autistic" because technically Asperger's is so similar, and he himself feels so far along -- he is an accomplished student debater and will attend Harvard Summer School -- that his parents sometimes tell him he may not receive the same diagnosis today. His concern about the Asperger's designation in the DSM is mostly in relation to those who need additional help, and for parents, he said.

"I don't think it would be in the best interest of the parents with children who are just being diagnosed, and also for kids who really do need what people with Asperger's need instead of what people with autism need," he said.