The Autism News | English


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?”

Shannon Knall, a mother in Simsbury, Conn., said her son was diagnosed with autism when he was 2 1/2.

“I was on the phone every single day with Birth to Three with the state of Connecticut to get 20 hours of early intervention services – and I can tell you, with that advocacy and that constant staying on it, I’ve never gotten 20 hours, and that was eight years ago,” Knall said.

Her son, now 10 and a fifth-grader, has Asperger’s syndrome and is considered high-functioning, at least intellectually.

“I cannot at all comprehend the level of difficulty that will follow without that (autism) diagnosis,” said Knall, the Connecticut advocacy chairwoman for Autism Speaks. “It’s very scary. For us as a community, we are constantly facing an uphill battle to get whatever we can get for our kids. There is always a block in the road, and this is another one. Or could be.”

Knall also worried that a change in criteria could exclude her family and others from the benefits of a state mandate that took effect in 2010. The law requires insurers to cover specialized treatment for children with autism, such as applied behavioral analysis, which can run into the tens of thousands of dollars in a matter of months.

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.

Kentucky

Please share your reaction! Give your opinion by filling out the form below.

Share this news with friends, family, or colleagues by clicking on the shortcuts below: