"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.
One undercurrent in the debate has been the suspicion that the change was made to cut costs. Attwood and King both said that although that might or might not have been an intention, it will be an effect.
"The medical insurance companies and other agencies will save money," Attwood said. "I can't say that this has been the driving force of the change; all I know is that this is the highly probable outcome. With fewer people being diagnosed, it's going to be less expensive for the agencies that support such individuals -- either government or private."
Some people with Asperger's may fit under "social communication disorder" in the new DSM-5.
The manual also is adding "sensory sensitivity" to the autism spectrum criterion. This involves extreme sensitivity to a person's environment, including the touch of other people, the sensation of the clothing they wear, and sights, smells and sounds around them. Attwood praised this addition.
"The ultimate impact of the DSM is going to be wait-and-see," King said. "It's a guideline, not an absolute end-all and be-all of how to treat this. A clinician can use their own judgment based on their own experience."
The U.S. National Institute of Neurological Disorders and Stroke has more about Asperger's syndrome.
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