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Autism Re-Defined

Dianna Graveman |18, April 2012


The official definition of autism is slated to change next year in 2013, and parents are worried.

Experts with the American Psychiatric Association (APA) have proposed changes to the definition of autism, and parents are concerned that might make it more difficult for their children to receive a diagnosis or get treatment. The new definition, if approved, will be included in the Diagnostic and Statistical Manual of Mental Disorders (DSM), which health professionals and insurance companies use to determine treatment and levels of insurance coverage for mental illnesses.

Autism spectrum disorder currently is considered an umbrella for Autism, Asperger's Syndrome, and Pervasive Development Disorder Not Otherwise Specified (usually referring to those who do not fit exactly within the autism category). Previously, people must have exhibited at least six of twelve possible behaviors to be diagnosed within this spectrum. A New York Times article published in January states that the proposed changes to the new DSM edition, which will be published in 2013, will eliminate Asperger's Syndrome and Pervasive Development Disorder Not Otherwise Specified (PDDNOS) from the definition. In addition, a patient will have to show a deficit in three areas of social interaction and communication, along with two repetitive behaviors.

Many parents and some experts agree these stricter guidelines may make it more difficult to diagnose autism.

In an ABC News report published in January, Wendy Stone, director of the University of Washington Autism Center said, "The line between PDDNOS and autism is often blurry, as is the line between Asperger's disorder and 'high functioning' autism."

The changes will also probably slow the rapidly rising rate of autism diagnoses, which has increased sharply over the past few years. According to the Center for Disease Control and Prevention (CDC), one in 110 children in the United States has been diagnosed with autism.

A team of researchers at the Child Study Center at Yale School of Medicine analyzed data to test the criteria used in the current definition of autism, as published in the most recent edition of the DSM. They found that half of the people diagnosed with autism would no longer merit a diagnosis under the proposed new definition, according to a statement from Yale.

Dr. Fred Volkmar, director of the center, led the research team and emphasized in his statement that findings suggest "only the most cognitively able" would not fit within the new guidelines for diagnosis.

However, some experts state that high-functioning people with autism still need treatment and support and may now "fall between the cracks." They maintain that those people who don't qualify for a diagnosis may be able to get by, but with a less fulfilling and functional lifestyle. These individuals and their families may not be able to get insurance coverage for treatment, education, or social services that they really need to sustain a good quality of life.

However, other experts like Dr. Catherine Lord, director of the Institute for Brain Development, seek to calm parents' fears. In her January interview with "CBS This Morning," she stated that the intention of revising the definition of autism is not to exclude patients, but to more clearly define the disorder. The Institute for Brain Development is a joint project of Weill Cornell Medical College, New York-Presbyterian Hospital, the New York Center for Autism, and Columbia University Medical Center.

"CBS This Morning" co-host Erica Hill said that the concern is that children who no longer fall within one of the categories on the spectrum might lose services they need. Dr. Lord said the benefits are not expected to change if a person has already been diagnosed.

"I think that the intention of the new criteria is to better describe children who have--and adults--who have autism, Asperger's syndrome, PDD-NOS or anything that falls within that criteria. ... We don't want criteria that diagnose everyone as having autism. So we want to do a better job of diagnosing the people who do, but we're not trying to exclude anyone," Lord said.

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