Parents concerned children will lose services if autism’s definition changesHARTFORD, Conn. – When Caleb Geary was diagnosed with autism at age 3, he had never spoken or eaten solid food.
By: By Vanessa De La Torre and William Weir, INFORUM
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.
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.
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-analyzed 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?”
After news about Volkmar’s study came out, Darrel Regier said his email inbox was “flooded.” He’s received 10,000 emails and counting.
“These are legitimately concerned parents who are worried that their kids are going to be dumped from these services,” said Regier, who serves as research director for the American Psychiatry Association.
The data in the Yale study is old, Regier said, and the diagnoses of the subjects were made at a time when the criteria for autism were still very much in flux. “And (the data) had a high number of very high-functioning people who are not necessarily representative of the general population” of people with autism, Regier said.
Regier cites two field studies that were recently completed that used new data and got very different results. One concludes that the new criteria would decrease diagnoses by only 5 percent and the other concludes that it would actually increase diagnoses by 1 percent. He said the data is still being prepared for publication, so he couldn’t release details of the results.
He said the DSM task force committee agreed on the new criteria 11 to 1, with Volkmar the only member to object. Regier also noted that for much of his career Volkmar has focused on Asperger’s, so he likely would be interested in keeping it as a separate diagnosis.
The task force committee has until December before anything is finalized, and the new criteria will be subject to three independent reviews in the meantime.
“We just don’t think at this point in time that the study that Fred (Volkmar) is about to release is one with a good database to make these dramatic projections,” Regier said.
“I don’t mind using old data and doing what Fred did, but you need to call that a hypothesis-generating study,” he said. “To come out and say definitely that you’re going to lose 40 (percent) is just not a justifiable claim, based on that dataset.”
Dr. Deborah Fein, a neuropsychologist and psychology professor at the University of Connecticut, has mixed feelings about the proposed new criteria.
“The point about collapsing everything into the autism spectrum disorder, I do think that makes sense because I don’t think there’s adequate evidence that there’s a significant difference between them.”
Fein said she has her doubts that the effect would be as dramatic as Volkmar’s study suggests. “I think he was looking at a particular slice of the pie,” she said.
“The population I’m most concerned about is toddlers.”
A study that she recently worked on found that 20 to 25 percent of the toddlers currently diagnosed as having Autism Spectrum Disorder would not qualify under the new criteria. Many of these children would likely develop additional autism-related symptoms a few years later, as is common, and then meet the criteria.
But by that time, she said, they would have missed out on a few years of services, and early intervention is crucial in treating autism.