Clipboard: Proposed narrowing of autism definition in dispute

By Chelsea Conaboy, Globe Staff

The American Psychiatric Association is considering narrowing the definition of autism as it updates the Diagnostic and Statistical Manual of Mental Disorders, the widely-used reference manual for mental disorders. The proposed change has some families and health care providers concerned that it will block some people from getting necessary care.

Benedict Carey of the New York Times looks at the challenges of defining autism and what’s at stake:

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.”

Some experts say the vagueness of the autism definition and related conditoins has led to skyrocketing numbers of people being diagnoses with the disorders.

Bonnie Rochman writes on the Time Healthland blog that the change might actually increase access to care for some children, particularly those in states where having Asperger syndrome or the broad diagnosis of a pervasive development disorder doesn’t qualify them for services. The change would consolidate those diagnoses with autism.

James McPartland, an assistant professor at Yale’s Child Study Center and co-author of an analysis of the change that found that the new definition would exclude many higher functioning individuals, is taking questions on the New York Times Consults blog today.