What's in a name? Losing Asperger's label not such a big change

Fri Dec 21, 2012 2:19am EST
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By Julie Steenhuysen

CHICAGO (Reuters) - Struggling to describe her son, Suzanne Kolen of Long Island, New York, uses a friend's recent description: He's the 13-year-old boy bouncing down the road in the rain looking very much like Winnie the Pooh's friend, Tigger.

"He's a genuinely happy kid," Kolen says of her son, a bright boy who loves nature and paleontology and has never been defined by his diagnosis of Asperger's syndrome, a mild form of autism marked by social awkwardness and narrow interests that make personal relationships challenging.

Matthew's diagnosis will soon be dropped in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders or DSM-5, the American Psychiatric Association's diagnostic reference book, to be subsumed into the broader category of autism spectrum disorder.

Although autism can range from highly functioning individuals like Matthew to those with severe speech and intellectual disabilities, in general individuals struggle with difficulties in communication, behavior and social interaction.

Dropping the Asperger's diagnosis in the new DSM, due out this spring, has caused consternation for some families.

"One of the biggest concerns is that some who are higher functioning will no longer meet the more stringent criteria and will therefore have difficulty getting services," says Dr. Elizabeth Laugeson, an autism researcher at the University of California Los Angeles.

An analysis by Dr. Fred Volkmar of the Yale School of Medicine released earlier this year suggested as many as 45 percent of those currently diagnosed with autism or a related disorder would no longer qualify under the new definition.

Laugeson said Volkmar's analysis was based on a review of older medical records that might not have captured all of the symptoms that would qualify a person for an autism diagnosis under the new standard.   Continued...

Matthew Kolen, who was diagnosed at age eight with Asperger's syndrome, puts his hand over his head while doing his homework in Long Island, New York April 16, 2012. REUTERS/Shannon Stapleton