(ARLINGTON, Va.) -- The American Psychiatric Association formalized the diagnosis of Asperger's -- a syndrome marked by impaired social interaction and sensory overload -- in 1994, 50 years after it was first described by Austrian pediatrician Hans Asperger.
But the association plans to remove the term "Asperger's" from its new diagnostic manual, set for release in 2013 -- a decision that has sparked criticism from advocacy groups.
"When the term 'Asperger's' started to get used, it was a tremendous relief for families of children and adults with the syndrome. They finally had a name for what was going on; they could finally understand what the struggle in their lives was about," said Dania Jekel, executive director of the Asperger's Association of New England. "My worry is that we'll go back 16 years to a time when folks with Asperger's syndrome will not be recognized."
But members of the American Psychiatric Association's Neurodevelopment Disorders Workgroup, the group spearheading the change, said removing the term "Asperger's" from its manual and instead refering to it as an autism spectrum disorder will help focus the diagnosis on an individual's special skills and needs at that moment in time.
"The Asperger's distinction is based on early language delay, but many people come in as adults and have difficulty reporting this reliably," said Francesca Happe, professor of cognitive neuroscience at the Institute of Psychiatry in London, and a member of the workgroup. "We have known for years that autism is a spectrum, which is enormously heterogeneous...There is no good basis to distinguish Asperger's from high-functioning autism. The distinction doesn't make scientific sense."
The term "high-functioning" refers to language and intellectual ability -- skills that set Asperger's apart from other disorders on the spectrum. But Jekel worries that removing the term "Asperger's" might open the door for misinterpreting it as just a mild form of autism.
"For many, Asperger's is not mild," she said. "If you have an IQ that's fairly high and you're verbal, people expect you to be like everyone else and get along in the world. But this is something that really can be very, very difficult for people to live with."
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