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As autism definition changes, parents worry

– 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 changes would eliminate the high-functioning variations on autism: Asperger’s disorder and PDD-NOS, or “pervasive developmental disorder not otherwise specified.”

However, a small percentage of children considered mildly autistic and previously given the notoriously ill-defined PDD-NOS diagnosis would fit more accurately under a non-autism label, autism panel members say.

So another new category, “social communication disorder,” would be created to include such children, who merely relate poorly to others and have trouble reading facial expressions and body language.

Fear on both sides

Opponents include older kids and adults with Asperger’s who don’t want to be lumped in with more severe autism, and parents like Kelly Andrus of Lewisville, Texas. Her son, Bradley, was diagnosed with mild autism a year ago, at age 2.

“I’m really afraid we’d be pushed out of the services we get,” she said. That includes a free preschool program for autistic kids and speech and occupational therapy, which cost her $50 a week. The family has no medical insurance.

Dr. James Harris, a panel member and the founding director of the developmental neuropsychiatry program at Johns Hopkins University, said the proposal will provide a better label for children who really only have communication problems.

“I don’t want a child labeled as autistic, which suggests a chronic, lifelong problem, when he has a social communication problem that may get better if he has proper services and his brain matures,” Harris said.

Harris said these kids don’t need intensive autism therapy but should be eligible for other types of special education.

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