Is Asperger's Syndrome Becoming a Vanishing Diagnosis?

ASPIES ARE UPSET AT BEING LUMPED IN WITH AUTISM...

Recently proposed changes to the upcoming DSM-V (Diagnostic and Statistical Manual of Mental Disorders) have angered many individuals and families of individuals with Asperger's Syndrome. Many 'Aspies' see this change as an attack on their identity. They feel it is not really a medical question, it's an identity question.

The problem involves the proposed merging of Asperger's Syndrome, a disorder at the milder end of the autism spectrum and often thought of as a different group entirely, with the more severe, broader autism spectrum diagnosis. Many experts and interested individuals believe this inclusion could result in fewer individuals with Asperger's being diagnosed and receiving help as their symptoms are milder and more covert.

The diagnosis of Asperger's Syndrome became an official part of the DSM in 1994, only 16 years ago. Now it has been proposed to eliminated it from the next DSM edition due to be released in 2012. In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

The growing epidemic of Autism in American children, which is now affecting approximately 1%, can be attributed to the rise of Asperger's and another milder form of Autism known as pervasive developmental disorder not otherwise specified (PDD-NOS).

The general public has a fairly positive view of the term Asperger's syndrome. Asperger's has recently been highlighted in popular culture through films and books portraying these individuals as geeks, brilliant nerds or savant-like geniuses; but just as it was awakening the consciousness of America, the disorder is headed for obsolescence.

"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder," said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the DSM-V manual.

"Asperger's means a lot of different things to different people," Dr. Lord said. "It's confusing and not terribly useful."

This statement is upsetting to the Asperger population. The opponents, mostly older teens and adults with Asperger's, strongly disagree. Liane Holliday Willey, a Michigan author and self-described Aspie who has a daughter with Asperger's Syndrome, fears Asperger's kids will be stigmatized by the autism label--or will go undiagnosed and get no services at all. Other experts agree that the loss of the Asperger's label will inhibit the mildly-affected individuals from even being assessed.

Whether or not Asperger's Syndrome will disappear from the DSM-V, the medical lexicon, in favor of the broader, inclusive term, Autism Spectrum Disorder remains to be seen.