In the autism world, people with Asperger's syndrome are sometimes seen as the elites, the ones who are socially awkward, yet academically gifted and who embrace their quirkiness.
Now, many so-called "Aspies" are upset over a proposal they see as an attack on their identity. Under proposed changes to the most widely used diagnostic manual of mental illness, Asperger's syndrome would no longer be a separate diagnosis.
Instead, Asperger's and other forms of autism would be lumped together in a single "autism spectrum disorders" category. Some parents say they'd welcome the change, thinking it would eliminate confusion over autism's variations and perhaps lead to better educational services for affected kids.
But opponents — mostly older teens and adults with Asperger's — disagree.
Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger's, fears Asperger's kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.
Grouping Aspies with people "who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?" Willey said.
Rebecca Rubinstein, 23, a graduate student from Massapequa, New York, says she "vehemently" opposes the proposal and will think of herself as someone with Asperger's no matter what.
Autism and Asperger's "mean such different things," she said.
Yes and no.
Both are classified as neurodevelopmental disorders. Autism has long been considered a disorder that can range from mild to severe. Asperger's symptoms can vary, but the condition is generally thought of as a mild form and since 1994 has had a separate category in psychiatrists' diagnostic manual. Both autism and Asperger's involve poor social skills, repetitive behavior or interests, and problems communicating. But unlike classic autism, Asperger's does not typically involve delays in mental development or speech.
The American Psychiatric Association's proposed revisions, announced Wednesday, involve autism and several other conditions. The suggested autism changes are based on research advances since 1994 showing little difference between mild autism and Asperger's. Evidence also suggests that doctors use the term loosely and disagree on what it means, according to psychiatrists urging the revisions.
A new autism spectrum category recognizes that "the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders," said Dr. Edwin Cook, a University of Illinois at Chicago autism researcher and member of the APA work group proposing the changes.
The proposed revisions are posted online at http://www.DSM5.org for public comment, which will influence whether they are adopted. Publication of the updated manual is planned for May 2013.
Dr. Mina Dulcan, child and adolescent psychiatry chief at Chicago's Children's Memorial Hospital, said Aspies' opposition "is not really a medical question, it's an identity question."
"One of the characteristics of people with Asperger's is that they're very resistant to change," Dulcan said. The change "makes scientific sense. I'm sorry if it hurts people's feelings," she said.
