Families Concerned As APA Attempts To Redefine Autism
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Parents worry that services like art therapy might not be available in the future to kids and adults with milder forms of autism. (SCA/Flickr)
A recent Yale University study found that out of a group of patients diagnosed with autism participating in a 1994 field trial, roughly half wouldn’t be considered autistic anymore under new guidelines proposed by the American Psychiatric Association (APA).
Dr. Fred Volkmar at the Yale Child Study Center headed the impact analysis. “Given the potential implications of these findings for service eligibility,” he said in presenting his study, “our findings offer important information for consideration by the task force finalizing DSM-5 diagnostic criteria.”
DSM-5 is the fifth edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders, to be published in 2013. It would include new standards for diagnosing autism, a neural development disorder with symptoms of impaired social and behavioral functioning.
Current diagnoses come as three separate conditions: Asperger’s Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PPD-NOS), and autism. Under the proposed change, Autism Spectrum Disorder would become the general diagnosis with three levels of severity in patients: “requiring support,” “ requiring substantial support” and “requiring very substantial support.”
News of the change drew sweeping concerns from a community already beset with challenges in finding support for their autistic loved ones. Some adults and children with milder forms of autism would technically no longer meet the criteria to be diagnosed as such. Parents worried their children wouldn’t qualify to get the help they needed.
But when reached for comment, experts sought to soothe those fears. Dr. Jonathan Tarbox, director of research and development at the Center for Autism and Related Disorders, said the new definition was in an effort to streamline diagnoses, rather than exclude potential patients.
“The distinctions between Asperger’s disorder, PDD-NOS and Autistic Disorder were pretty arbitrary,” Tarbox said. “There was a lot of grey area. One individual could be diagnosed with one thing at one time and then a different one at another time.”
According to the Centers for Disease Control and Prevention (CDC), diagnosis rates have increased to about one in every 110 children. The vague distinctions on the autism spectrum may be partly to blame, though CDC researchers have typically attributed the rise to “better detection and methodologies.”
Tarbox also pointed out the results of Volkmar’s study weren’t infallible. “The important thing to note is, that’s just one particular study, with a small group of people, looking at really old data from the ‘90s, just done by one group. And it’s not a representative sample,” he said. “The authors of the study themselves said the participants were quite high-functioning. So we don’t need to get worried yet that it’s going to be representative of reality.”
That high-functioning distinction has also posed problems for people seeking help for their autistic family members. Melanie Weininger, a 29-year-old cultural exchange program coordinator in Los Angeles, said much of the programming available to her brother, who has severe autism, seems tailored to those with milder forms.
“I don’t think the program’s really designed for someone at his level,” Weininger said of her brother’s current care center. “From what my mom’s told me, they talk about current events. My brother doesn’t understand that.”
Jordan Weininger, 27, was diagnosed at 18 months when little was known about the condition. His family has been treading unfamiliar ground ever since to find him adequate help.
At 6, Jordan was placed in a group home for children and his parents enrolled him in school. He graduated when he was 21, and since then, has been living in a group home for adults while attending day care.
Though her family has been frustrated at times, Weininger said she couldn’t imagine what their lives would be like caring for Jordan without the services and funding they’ve found.
“It’s difficult enough as it is,” she said. “There’s no way that my mother and I could take care of him on our own. We would have to have him stay at home, but that would be near impossible. It would be a big burden financially as well. We wouldn’t be able to support him with the services that he needs.”
Jordan’s care is covered by state-provided financial aid. Because of the severity of his condition, he’s in no danger of losing that support. Further, the general consensus among experts is that the new guidelines would not be retroactive, meaning no one who has a formal diagnosis now would suddenly be dropped.
Tarbox seemed hesitant to say for sure what the impact of the new guidelines might be. “It is a concern that if individuals who have a real-life, clinical need for services are not able to get a diagnosis at all, they won’t get access to services,” he told Neon Tommy.
But, he added, “I’m not convinced that’s something we need to be concerned about right now for a large percentage of people.”
And though her brother’s diagnosis will stand regardless of the proposed changes, Weininger said she hoped the new standards wouldn’t affect support available to families of milder cases.
“I certainly wouldn’t wish people to lose services, no matter where they fall on the spectrum,” she said. “If there’s some impairment in functioning, it’s so important people get the help they need.”
Instead, she agreed the research could be considered a sign of progress. “I hope it’ll lead to better understanding of what the disorder is, and to more accurate diagnoses. And I would hope one day we’ll have a better idea of the cause,” she said. “It’s such a complicated disorder.”
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