Family Matters

Ending the Autism Epidemic: If the Definition Changes, Will Some Kids Lose Services?

With an official redefinition of autism in the offing, many parents are worried.

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Theresa Stuart

Bryson Stuart, 4, has made great strides in therapy since being diagnosed with autism two years ago.

What’s in a name? If that name is autism or Asperger syndrome or P.D.D.-N.O.S. (pervasive developmental disorder, not otherwise specified), the answer is: a lot.

Parents and experts are wondering how a proposed change to the official definition of autism — as contained in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the standard mental-health reference guide maintained by the American Psychiatric Association — would affect the services their children receive and the research dollars allocated to study the mysteries of an increasingly common condition that is believed to affect 1 in 110 people.

Laurisa Stuart credits intensive therapy with the turnaround her 4-year-old son, Bryson, has made since being diagnosed with autism two years ago. He wasn’t speaking at all then, but after countless hours of speech and occupational therapy, he’s gearing up for kindergarten, where he’ll be mainstreamed along with other children — albeit with an aide. Potentially losing those services in the event that Bryson would no longer meet the criteria for autism is “a very scary prospect.”

“It almost seems like they’re trying to lower the number of children with autism so it won’t look like such a huge surge,” says Stuart, a mother of four from Folsom, Calif. “But just because they haven’t classified those children doesn’t mean they are not going to exist anymore.”

On Thursday, the New York Times reported that revamping the definition of autism, by making it more stringent and emphasizing “classical autistic,” or more severe, symptoms, could exclude many people and sharply curtail the trend of rising diagnoses. The symptoms would still remain, obviously, but the categories could shift significantly:

The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria a person can qualify for the diagnosis by exhibiting six or more of 12 behaviors; under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors — a much narrower menu.

…“The proposed changes would put an end to the autism epidemic,” Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of a new analysis that predicts a decrease in diagnoses should the definition be altered. “We would nip it in the bud — think of it that way.”

MORE: MyAutismTeam: A New Site for Families With Autism

Some parents — especially those who have children with Asperger’s — are nervous about losing their diagnosis. “Parents are worried that autism spectrum disorder is very different from Asperger’s and they’re concerned what that autism label will mean for their child,” says Eric Peacock, who recently launched MyAutismTeam,  a social network for parents whose children have autism. “There is a segment of parents who feel that having a diagnosis of Asperger’s is better for their child than having an autism diagnosis because Asperger’s is typically seen as less of a cognitive impairment. Often it’s associated with quirkiness more than anything else.”

Sally Ozonoff, a University of California, Davis, psychiatry professor who authored a study published in August that found that autism runs in families to a much greater degree than previously thought, thinks parents are worrying unnecessarily. She wasn’t involved in refining the definition, but she wrote in an email that: “…I can state that the intentions of that group, and of most professionals in the field, would not be to exclude anyone from services or to tighten criteria to reduce the number of diagnoses. Far from it.”

Ideally, she said, some children would see improved access to therapy — particularly in states where children with Asperger’s and P.D.D.-N.O.S. diagnoses don’t qualify for state services, leaving their parents to rely on insurance or pay out of pocket.

MORE: For Siblings of Autistic Kids, Risk Is Far Higher Than Thought

Jennifer Pinto-Martin, director of the Center for Autism and Developmental Disabilities at the University of Pennsylvania, notes that the current version of the DSM — the fourth edition — broadened the criteria for autism, in effect contributing to more children receiving diagnoses. The current negotiations are simply an effort to temper the upswing. “It was an artificial inflation,” she says. “If you have a larger umbrella, more kids will fit under that umbrella.”

Revising the definition again may streamline some categories that don’t really belong under that umbrella, but it will also complicate things for researchers like her who rely on tracking trends over time. “I am sure this was not done without a lot of forethought, but I’m not so sure they thought about the fallout,” says Pinto-Martin.

The revisions, now under review by a cluster of experts, are due to be finalized by the end of the year. Until then, parents will undoubtedly continue to wonder about the potential impact.

On MyAutismTeam’s Facebook page, parents are already commiserating about what may lie ahead. “This is a tragedy in the making,” wrote Wendy White. Troy Semple posted: “Our 12 year old would not be where he is now without early intervention he received as a result of his ASD [autism spectrum disorder] diagnosis…excluding these kids will result in more cases of full-blown autism. Sorry, you can’t make autism go away by re-defining it.”

Says Peacock: “In the short term, this could actually cause some stress and trauma, and that’s the last thing these people need.”

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