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New Autism Definition Could Exclude Many From Diagnosis

UPDATED

A proposed new definition of autism could exclude many people now classified as having the disorder.

News reports from around the country say that the definition of the disability is being reassessed by a panel appointed by the American Psychiatric Association. The group is wrapping up work on the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, which The New York Times reports is the manual's first major revision in 17 years.

The Times talked to Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of a new analysis designed to weigh the potential effect of the proposal.

He said the changes would narrow the diagnosis so much that it could effectively end the autism surge.

"We would nip it in the bud," he told The Times.

The proposed change would consolidate the autism spectrum, which now includes people with Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS). They and those now diagnosed with autism would all be under one label—autism spectrum disorder. The Times said under the manual's current criteria, a person may qualify for the diagnosis by exhibiting six or more of 12 behaviors. The proposed definition would require people to exhibit three deficits in social interaction and communication and at least two repetitive behaviors—a narrower interpretation.

In the new analysis, Dr. Volkmar and others used data from a large 1993 study that were used to develop the current criteria. They focused on 372 children and adults who were among the highest functioning and found that overall, only 45 percent of them would qualify for the proposed autism spectrum diagnosis by the definition now under review, The Times said.

Some advocates told The Times they fear the effects of the new definition, should it become final later this year.

"If clinicians say, 'These kids don't fit the criteria for an autism spectrum diagnosis,' they are not going to get the supports and services they need, and they're going to experience failure," Lori Shery, president of the Asperger Syndrome Education Network, told The Times.

I asked whether the change, if it takes effect, means that all the students who receive special education services now based on a diagnosis of Asperger syndrome or PDD-NOS would suddenly lose those services.

Not exactly, Sonja Trainor, a senior staff attorney at the National School Boards Association, told me.

She said to keep in mind that medical or other diagnoses are different from a determination about whether a student needs special education services at school.

Federal special education law—the Individuals with Disabilities Education Act—doesn't rely solely on the Diagnostic and Statistical Manual of Mental Disorders, Ms. Trainor said.

"That diagnosis may have some bearing, but it's not the sole determining factor," she said.

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