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Redefining Autism

The scientific association that provides the diagnostic criteria for mental disorders will, for the first time in 17 years, alter the definition of autism this year in the standard handbook for clinical diagnosis, the Diagnostic and Statistical Manual of Mental Disorders.

The emerging details—the proposed definition is said to be about 90 percent complete—were released in a recent New York Times article. Using the current definition, a person would qualify for a diagnosis of autism spectrum disorder (ASD) by exhibiting 6 of 12 behaviors. These behaviors include difficulty in communicating, an inability to develop relationships with peers and trouble keeping the routines that are part of everyday life.

An American Psychiatric Association subcommittee, tasked with creating the new definition of ASD (which includes Asperger’s) show signs of disagreement even amongst themselves. But under the proposed changes, a person would need to fit a much narrower description, showing “three deficits in social interaction, and at least two repetitive behaviors,” according to the Times report.

One thing is abundantly clear, however. The proposed changes will alter the way the disorder is diagnosed and may alter the way people access social services. Insurance companies, doctors, parents and social service organizations are sure to be affected.

Proponents say the changes may make autism easier to diagnose and would likely slow the rate of autism diagnoses that have spiked in recent years due, in part, to increased awareness, research and advocacy. Critics—and parents—fear that some children with less obvious or less critical autism symptoms would no longer fit the new definition, excluding them from services and treatments.

According to Linda Bambara, a professor of special education and faculty investigator for the Center for Research to Practice, “Nobody yet knows how the changes will pan out.” “Yes, there is a strong rationale for changing the definition of autism spectrum disorders,” said Bambara.  ASD is a relatively new diagnosis and it’s not surprising that our definition will change as our understanding of the disorder evolves.

“This is a natural progression for science and for those that provide care for this community,” Bambara said. “But it is too early to tell how much the definition will change, or how federal, state and educational institutions will respond to the new definition.

Bambara realizes this news will concern some parents and advocates. “Families fight long and hard to ensure their loved ones are cared for appropriately, with limited availability to services particularly in a tough economy.” But she doesn’t believe the new definition is an effort to cut services for those who need it. Rather, it’s the logical progression for a newly defined disorder.

“Society has moved past the point where, before understanding these disorders at all, we simply told people who needed our help to ‘Suck it up!’” said Bambara.  So, the intent of the change is not to deny services to people who need it, but to clarify the diagnosis so that people who need help can get it.”
 
For now, Bambara says, “Stay informed and make contact with the advocacy groups that do a wonderful job informing the public.”

Bambara has 30 years of expertise in developmental disabilities, social and communication interventions and positive behavior supports for individuals with developmental disabilities and challenging behaviors. She is an author and researcher who has also worked with ASERT (Autism Service, Education, Research, and Training), a center funded through the Pennsylvania Bureau of Autism Services that provides training, education, and outreach for providers and families, and clinical services for individuals with autism spectrum disorders.

Story by Jordan Reese

Posted on Monday, February 06, 2012

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