Changing Names of Autism

Proposed changes to definitions of autism have Madison parents and doctors concerned

My nephew Mason is not exactly what I expected from autism. Yes, he likes to count the Tupperware containers every time the refrigerator door opens. Sure, his speech came slowly and unusually. At first he only recited scenes from cartoons and he parroted back what he heard. I would say, “Bye, Mason.” He would reply, “Bye, Mason.” But he makes eye contact most of the time. He loves hugs. He desperately tries to play with other kids, although his inability to register social cues often creates a barrier. Yet he never self-soothes through rocking, flapping his arms or other repetitive gestures.

So when he was diagnosed with Pervasive Developmental Disorder—Not Otherwise Specified, or PDD-NOS (one of the current subtypes on the autism spectrum), I was both surprised and not. Something was different, yet it didn’t seem to correlate with what I understood as autism.

It turns out there are a lot of people like me with differing ideas about what constitutes autism. Some of them are even doctors. This is despite official criteria that are supposed to help produce some uniformity or consistency in diagnosis.

“In practice, people don’t really hold up [the current] set of criteria. The result of this is when people say ‘Asperger’s,’ it means different things,” says Nan Huai, a licensed psychologist with the Wisconsin Early Autism Project. “Instead of clarifying things, it actually creates artificial divides and it confuses things.”

That, she believes, is part of what prompted the American Psychiatric Association to review its definitions of and diagnostic criteria for autism as it updates the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5. This review resulted in proposed changes that effectively eliminate sub-group differentiations, including PDD-NOS and Asperger’s syndrome. If the changes are adopted, all future diagnoses will be of autism spectrum disorder, or ASD. 

When the media reported the proposed changes earlier this year, some parents panicked. They worried that a lost diagnosis would lead to lost services, many of which are funded through insurance mandates, Medicaid waivers and other programs that kick in when insurance coverage runs out. In Wisconsin, parents of autistic children generally need an official medical diagnosis to invoke the protections or services, says Christina Iyama-Kurtycz, a UW School of Public Health and Medicine and Waisman Center developmental pediatrician who diagnoses and treats children with autism.

It has been commonly reported that the new criteria could lead to fewer autism diagnoses overall. “That just means that there’s a number of kids who won’t have the services they need,” says Iyama-Kurtycz.

My sister-in-law also worries that the single diagnosis won’t communicate enough information about Mason’s needs. She likes having words that distinguish him from the other kids on the spectrum, and she thinks they are valuable to his teachers and therapists. Huai sees a great deal of variance in the application of sub-category criteria, but she says placement on the spectrum is fairly reliable. That is, even if providers disagree about the sub-categorization of a particular child, most would agree that the child belongs somewhere on the spectrum.

But Iyama-Kurtycz says she has seen different providers evaluate the same children and reach different conclusions. 

Lingering inconsistencies stem in large part from the fact that a definitive cause of and cure for autism still elude us, says Matthew Maenner, a post-doctoral fellow at the Waisman Center.

What the proposed changes will do, Iyama-Kurtycz says, is unclear. She wonders whether insurance companies will require reevaluations using the new standards for currently diagnosed children. She hopes children currently diagnosed will be grandfathered into any programs rather than forcing them all to go through evaluations again.

Maenner does not expect a sea change. “Looking at it historically, these changes in practice and changes in policy don’t happen overnight,” says Maenner, who has worked with autistic children since long before he earned his Ph.D. in epidemiology and population health. “There’s some evidence that we’re still adjusting to the last changes that came out fifteen years ago.”

Even so, the wait until 2013 when DSM-5 is issued might feel interminable. “A lot of our parents are already stressed out. Kids’ behavior is challenging. The last thing parents need to worry about is something else they can’t control,” Huai says. She encourages parents to be patient and to wait for findings of field trials due out this summer; those likely will determine whether the proposed changes will be adopted.

“Focus on your kids’ current treatment and current schooling,” Huai advises. “The revision is a long process, and I have trust in the process … [and] as we get more data, things will be clear.” 

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