New Definition of Autism Will Exclude Many, Study Suggests

Benedict Carey

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Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most drastic estimate of how tightening the criteria for autism could affect the rate of diagnosis. For years, many experts have privately contended that the vagueness of the current criteria for autism and related disorders like Asperger syndrome was contributing to the increase in the rate of diagnoses — which has ballooned to one child in 100, according to some estimates.

The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”

Full story from NY Times here