Guideline Changes Set Asperger's Community on Edge
Psychiatric manual will fold it into autism spectrum disorders, leaving many unsure about getting needed services
"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 accommodations, that's the person I'm worried about," King said. "The one who, underneath it all, is suffering, but is so good at passing that they're off the radar of a lot of diagnosticians."
For children with Asperger's, early intervention, which includes parent training, is considered ideal. One question is whether early intervention will be easier or harder to obtain under the new criteria.
"In California, for example, if you have an Asperger's diagnosis, you are not eligible for the autism services as a young child," Lord said. But Attwood said he's concerned that with the change, "parents may not be eligible for early intervention services before the child goes to school."
Lord said a family "must be ready if they meet someone who doesn't understand the new criteria to be able to say, 'Look, one principle is a lack of social reciprocity. And even though my son is 12 years old and very bright and does go to school and does love his teacher and does take turns well, he still really struggles with ... understanding what a friend is even though he has play dates and does do things.'"
Eric Lipshaw, 21, a student at Oakland University in Rochester, Mich., is "110 percent" against the diagnosis change.
"I get disability support services, assistance on campus," Lipshaw said. "They give me a scribe for my handwriting -- that's illegible. They have note-takers and anything else we need."
Some job seekers with Asperger's turn to agencies that specialize in people with disabilities. Other adults need social security benefits or residential services. Some will lose these services along with the Asperger's diagnosis, Attwood said.
Karen Rodman, president and founder of Families of Adults Affected with Asperger's Syndrome, said although the Asperger's listing in DSM-4 was inadequate it was better than not using the term at all.
Rodman, whose husband has Asperger's and Tourette syndrome, said people with the diagnosis and their family caregivers already have unmet needs for assistance that will only get worse with the change.