HARTFORD, Conn. — When Caleb Geary was diagnosed with autism at age 3, he had never spoken or eaten solid food.

Now 6, the boy speaks and tests at his first-grade level — progress that his parents attribute to insurance-based services at home and intensive behavioral intervention at the boy's school in Hamden, Conn.

But they worry what will happen to Caleb's diagnosis — and the services that have come with it — if the American Psychiatry Association's proposal to change the definition of autism is adopted.

Lori Geary said she has already fought to get her son the help he needs. Tom Zwicker, Caleb's father and the director of an autism center for the Easter Seals of Coastal Fairfield County, Conn., said he believes insurance companies will start requesting annual diagnostic evaluations if the definition is revised. As a result, his son — and many other children — will lose out on services to treat their conditions.

"You have an entire group receiving services that would be left out in the cold," said Zwicker, who lives in Branford, Conn. "We're going to lose a whole generation of children."

The autism community has been embroiled in a heated debate for the past few weeks over the proposal to dramatically change the criteria for autism diagnosis in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The DSM-5, scheduled to be published in 2013, is the first revision since 1994.

The revision would create an umbrella category known as "autism spectrum disorder" that would include traditional autism, as well as Asperger's Syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) — which currently are considered separate disorders. A new category, social communication disorder, would also be created.

"What became very apparent is that there aren't clear boundaries, and that they really are all on a spectrum," said Darrell Regier, director of research for the APA. The current criteria, he said, is "fuzzy" and as a result, some people have been mislabeled as autistic, while others who need treatment can't get it because their symptoms don't match the current criteria.

"The thing that we tried to do is be a little more clear about the different deficits that these people have," Regier said.

But some experts worry that the revision's main effect will be to drastically reduce the number of people who are diagnosed with autism and who now qualify for services to treat it.

Fred Volkmar, director of the Child Study Center at Yale School of Medicine, is the lead author of a study that found that 44 percent of people previously diagnosed with autism would not meet the proposed new criteria for the diagnosis. The study was based on data collected about individuals in the early 1990s.

"We went back and re-analzyed the data and recoded it," said Volkmar, who was a member of the DSM task force committee but since has resigned. The methodology was "not perfect," Volkmar said, "but I don't think it's horribly bad either."

Periodic revisions and refinements of diagnoses are necessary, he said. "Certainly, you could make (the definition of) Asperger's better. The problem is, how do you justify change and how do you justify major change? It's an interesting discussion."

According to Volkmar's study, to be published in April in the Journal of the American Academy of Child and Adolescent Psychiatry and online later this month, about one-fourth of those diagnosed with autism would not meet the new criteria and nearly three-fourths of those with Asperger's also would not be diagnosed. Also, 84 percent of those diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified also would no longer meet the criteria.

"More and more people are doing better and better, so we have more people who are out and self-sufficient and independent," Volkmar said. "And there's a bit of worry that if you take away services, that that's the group that will suffer, not just in terms of losing a label but in terms of losing services.

"Schools have to do a re-assessment every three years. So in three years' time they say, 'Oh, this kid no longer qualifies.' Is that going to be a rationale for no more services?"

In Caleb's case, Lori Geary said, she and Zwicker spent $600 a week for four hours of daily ABA therapy before insurance started paying for it last year. The outlook for her son before treatment, she believes, was grim: "I fear he'd be in a group home setting for the rest of his life."

The boy couldn't speak. Caleb would explode at changes to his routine. If Geary was driving and made a left turn when he expected a right, there would be "hair pulling, shoes flying, kicking the seat," she said. Caleb's work with a therapist involves positive reinforcement to target impulse control, stimming — repetitive movements — and other behaviors.

"It's how we got him to talk, how we got him to eat, how we got him to sit on a stool at school," said Geary, a senior project manager at Yale's Center for Outcomes Research and Evaluation, which studies the effects of health care. Caleb now gets at-home therapy for two hours nearly every day for his social skills.

With the proposed change to the autism criteria, Geary said, "I'm nervous."

Here is the original post:
Possible change in autism definition worries some