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.

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, 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. “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.

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Redefining Autism: Proposal Worries Many Parents

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