What Will Redefining Autism Mean for Kids on the Spectrum?

Will a new definition of autism affect your child?
Will a new definition of autism affect your child?

I was introduced to the world of autism in 2003 when my stepson, then 5 years old, was diagnosed. What a generation ago would have been considered "quirky" now had a name -- Aspergers Syndrome -- and a bewildering array of treatments and interventions, none of which guaranteed anything, all of which offered him the possibility of a better chance at school and at life.

No one knows what causes autism. The autism-MMR vaccine link has been thoroughly debunked, but there are genetic components to consider and environmental issues to look at. As many as one in 110 kids in the United States are diagnosed with autism each year, and some people have speculated that the rapidly increasing rate can be blamed on the fact that the definition of the autism was broadened in the 1990s.

"It was an artificial inflation," Jennifer Pinto-Martin, director of the Center for Autism and Developmental Disabilities at the University of Pennsylvania, told Time magazine. "If you have a larger umbrella, more kids will fit under that umbrella." A new study published in the journal "Pediatrics" today seems to underscore the idea; it explores the link between "co-occurring conditions" like anxiety, depression, developmental delay, speech problems, and seizures and children who seem to "outgrow" their autism diagnoses, indicating that some children who are on the spectrum may be there because a separate condition seemed like autism, not because they're actually autistic.

Last week, the American Psychiatric Association announced that a team is working on a proposal that would narrow the definition of autism -- and parents are concerned that their kids may no longer qualify for the assistance they desperately need.

"Our fear is that we are going to take a big step backward," Lori Shery, president of the Asperger Syndrome Education Network, told the New York Times. "If clinicians say, 'These kids don't fit the criteria for an autism spectrum diagnosis,' they are not going to get the supports and services they need, and they're going to experience failure."

The changes are being proposed as part of the upcoming fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM). They would mostly affect those who are on the "high-functioning" side of the spectrum -- people with Aspergers Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), which is a catch-all for people who exhibit some of the less-severe symptoms of autism. The proposed change would eliminate Aspergers and PDD-NOS from the manual, consolidating them under a single "Autism Spectrum Disorder" category. The criteria for qualification in that category would also change: Now, a person qualifies if they show at least any six out of 12 behaviors; in the proposed definition, a person would have to show three specific problems with social interaction and communication and at least two repetitive behaviors.

The proposed changes could sharply reduce the number of children with autism -- not because their symptoms have changed, but that they didn't fit the new criteria. "We would nip it in the bud," Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine who has been analyzing the proposal, told the New York Times. (Volkmar had been on the APA panel crafting the new definition, but resigned because he disagreed about the reason for the redefinition and the effect it might have on children).

Dr. Catherine Lord, the director of the Institute for Brain Development and a member of the APA panel, disagrees. "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," she told "CBS This Morning". "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."

The proposal, which is still being developed, would go into effect at the end of 2012. In the meantime, "Almost all the autism insurance laws that have been enacted in 29 states define autism spectrum disorders according to the most current definition of autism in the DSM," Geraldine Dawson, the chief science officer for Autism Speaks, told the Washington Post. "Thus, all categories of autism, as long as they meet the criteria of autism spectrum disorder, will continue to be covered."

Do you have a child on the spectrum? What would happen if he or she no longer qualified for services?

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