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Autism Diagnosis Change: What Does It Mean?

By Daniel J. DeNoon

A story in today’s New York Times sounds an alarm for parents of children with autism — particularly kids at the high-functioning end of the autism spectrum.

The article points to a study suggesting that proposed changes to the way autism is diagnosed will threaten “health, educational, and social services” many autistic children now receive.

What’s happening? Here’s a brief FAQ:

What did the New York Times report?

The NYT reported on a presentation made yesterday by a prominent autism researcher at the meeting of the Icelandic Medical Association.

The researcher, Fred R. Volkmar, MD, director of the Child Study Center at the Yale School of Medicine, re-analyzed data from a 1993 autism study using a new definition of autism proposed for 2013.

As currently proposed — the new definition won’t be final until later this year — the diagnosis of Asperger’s disorder will go away. So will pervasive developmental disorder not otherwise specified (PDD-NOS) and childhood disintegrative disorder.

Instead, those diagnoses will be “subsumed” into the single diagnosis of autism spectrum disorder or ASD.

Volkmar told the NYT that this means fewer than half of the higher-functioning kids now diagnosed with autism would meet the new diagnosis. Some 75% of kids with Asperger’s would be excluded, he says, as would some 85% of those with PDD-NOS.

A member of the committee writing the new diagnostic criteria, Catherine Lord, PhD, director of New York’s Institute for Brain Development, told the NYT she strongly disagrees with Volkmar’s estimates of the impact of the new criteria for autism diagnosis.

Why is diagnosis of autism changing?

The bible of psychiatry is the Diagnostic and Statistical Manual or DSM. The DSM lists every allowable psychiatric diagnosis and spells out the criteria for each diagnosis.

Every once in a while, the DSM gets updated by the American Psychiatric Association (APA, not to be confused with the other APA—that is, the American Psychological Association). The current version, the fourth edition or DSM-IV, became official in 1994.

A committee of experts appointed by the APA is writing the new edition, DSM-V. DSM-V will become official in 2013. A preliminary draft was revealed to the public in 2010. A final draft will be completed by the end of 2012.

The preliminary draft of DSM-V is a major, radical revision of the previous version. Among the new directions is a rethinking of the autism diagnosis.

Every autism expert would agree that autism has many faces. But there’s no definitive dividing line between the several current diagnoses that are part of the autism spectrum. DSM-V seeks to remedy the situation by putting all these eggs into one basket: a basket to be called “autism spectrum disorder.”

“Previously, the criteria were equivalent to trying to cleave meatloaf at the joints,” is how the DSM-V rationale for the new catch-all diagnosis goes.

Why might my child’s diagnosis change?

Those most affected by the new diagnosis will be some of the highest-functioning people with the least severe forms of autism: Asperger’s syndrome and PDD-NOS.

It’s not clear exactly how many patients who currently have one of the autism diagnoses would no longer be diagnosed as having autism if the preliminary draft of the DSM-V becomes final.

Volkmar’s study uses data from the 1993 study on which the current autism diagnosis is based. The findings behind the NYT report are based on the highest-functioning 372 children and adults in that study. Volkmar told the NYT that an analysis of 1,000 cases will be published later this year.

What would happen if my child’s diagnosis changes?

It’s not entirely clear whether children receiving special educational or social services would lose them if their diagnosis changes.

Eligibility for many of these programs is indeed based on a psychiatric diagnosis. But programs may also consider a child’s actual impairment.

Will the new definition of autism end the autism epidemic?

There has been an explosion of autism cases since the early 1990s. Why?

It could be that something in the environment has changed, affecting children with some genetic susceptibility to developmental disorders.

Or it could be that families and doctors are more aware of autism, and are looking more closely for signs of developmental issues.

One major factor is a huge increase in funding for special education and treatment programs. These programs give parents an incentive to seek a diagnosis for children with signs of developmental delay.

But others feel that the current broad definition of autism is catching many children whose developmental issues might otherwise not have been addressed. That’s why Volkmar told the NYT that the DSM-V’s more restricted autism definition would end the so-called autism epidemic.

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