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Monday, April 29, 2013

Autism Registry: Implementation Problems

The Charleston Daily Mail reports that although West Virginia has an autism registry, its numbers may not be comprehensive.
But achieving compliance with those reporting the diagnosis has proven difficult, said Julie O'Malley, the Autism Spectrum Disorder Registry coordinator. It's not just West Virginia, though - she says it's a national and international problem.

"Compliance has been an issue. 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," O'Malley said.
In 2004, West Virginia became the first state to establish an autism registry, according to Barbara Becker-Cottrill, executive director of the West Virginia Autism Training Center. Doctors are required to fill out a form and report it to the registry upon diagnosing an individual on the autism spectrum.

Although the registry does not contain names, it states that a case has been reported and from which county.

That information allows the state to apply for grants and resources necessary to help those on the autism spectrum.
In addition to compliance issues with diagnosticians, other situations complicate matters.
In some cases, families don't want to disclose that their child is having problems, and some families don't go for a diagnosis, Becker-Cottrill said.