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Editorial: Better reporting could help boost autism services

Apr. 29, 2013 @ 09:45 PM

More than 1,000 people turned out Saturday for the 12th Annual Rally for Autism in Huntington, an event that featured a 5K walk, a 5K run and a 25-mile bicycle tour.

Those activities were the means to raise money for three organizations dedicated to providing services to people who have been diagnosed with autism or autism spectrum disorder: the Autism Services Center, the West Virginia Autism Training Center at Marshall University and the Autism Society River Cities.

Autism spectrum disorder and autism generally refer to a group of complex disorders of brain development characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. The cause for such disorders has not been determined yet, nor has a cure.

So much of the focus is placed on helping sufferers cope with their everyday lives and bridge the issues they face. "I think most people these days understand what autism is, but now it's more about finding ways and the money to provide lifetime services to individuals with autism," said Mike Grady, chief executive officer of Autism Services Center.

That has been an ongoing struggle. An example in West Virginia in recent years was the effort to have certain behavioral treatments recognized as appropriate for insurance coverage, an effort that eventually was successful.

However, a suspected shortfall in reporting the number of children who have been diagnosed as having an autism spectrum disorder may be limiting the amount of money available to provide those services, according to Julie O'Malley, the Autism Spectrum Disorder Registry coordinator in West Virginia.

She explained in a report by the Charleston Daily Mail that psychologists, pediatric neurologists and pediatricians are charged with reporting any child they diagnose on the autism spectrum. But she and others suspect that, for a variety of reasons, many cases are not reported. "Compliance has been an issue," she said. "The big centers -- the ones that diagnose on a daily basis -- are reporting. But we're missing tons of tiny reporting centers all over the state. They just aren't reporting."

That could be because the medical provider is busy. Other factors may be that parents aren't recognizing the symptoms or are reluctant to have their children checked out by a physician.

Whatever the reasons, the reporting gap is a shame, for multiple reasons.

The registry doesn't include names, but it does list a reported case and in what county. That gives officials a better handle on the number of people with autism and autism spectrum disorders.

A more accurate reading of how widespread the disorder is can help ensure that West Virginia and its families are receiving the full financial help that is warranted, whether from the federal government or other sources.

Those same numbers also can help researchers more accurately track the incidence rate, pinpointing where the incidence may be increasing and declining -- and tip them off to possible trends to explore.

For parents who are reluctant to have their children diagnosed, they may be depriving their children of much-needed help.

We encourage registry officials to continue working to raise awareness about the issue, and we hope that medical providers and parents will hear the message and act.

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