Doctors Want to Redefine Autism; Parents Worried
One child doesn’t talk, rocks rhythmically back and forth and stares at clothes spinning in the dryer. Another has no trouble talking but is obsessed with trains, methodically naming every station in his state.
Autistic kids like these hate change, but a big one is looming.
For the first time in nearly two decades, experts want to rewrite the definition of autism. Some parents fear that if the definition is narrowed, their children may lose out on special therapies.
For years, different autism-related labels have been used, the best known being Asperger’s disorder. The doctors working on the new definition want to eliminate separate terms like that one and lump them all into an “autism spectrum disorder” category.
Some specialists contend the proposal will exclude as many as 40 percent of kids now considered autistic. Parents of mildly affected children worry their kids will be left out and lose access to academic and behavioral services — and any chance of a normal life.
But doctors on the American Psychiatric Association panel that has proposed the changes say none of that would happen.
They maintain the revision is needed to dump confusing labels and clarify that autism can involve a range of symptoms from mild to severe. They say it will be easier to diagnose kids and ensure that those with true autism receive the same diagnosis.
With new government data last week suggesting more kids than ever in the U.S. — 1 in 88 — have autism, the new definition may help clarify whether the rising numbers reflect a true increase in autism or overdiagnosis by doctors.
There is no definitive test for autism. The diagnosis that has been used for at least 18 years covers children who once were called mentally retarded, as well as some who might have merely been considered quirky or odd. Today, some children diagnosed with autism may no longer fit the definition when they mature.
“We’re wanting to use this opportunity to get this diagnosis right,” said Dr. Bryan King, a member of the revision panel and director of the autism center at Seattle Children’s Hospital.
The revision is among dozens of changes proposed for an update of the psychiatric association’s reference manual, widely used for diagnosing mental illnesses. The more than 10,000 comments the group has received for the update mostly involve the autism proposal, with concerns voiced by doctors, researchers, families and advocacy groups. A spokeswoman declined to say whether most support or oppose the autism revision.