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 accommodat
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