Lack of reporting hinders state autism efforts
CHARLESTON, W.Va. -- Many doctors aren't complying with a requirement to report diagnoses of children on the autism spectrum to West Virginia's autism directory, the directory's coordinator said.
Compliance has been an issue despite efforts to inform doctors about the importance of reporting autism diagnoses to the registry, Julie O'Malley told the Charleston Daily Mail.
"We're all busy, I know,'' O'Malley said. "But we struggle with this from year to year to year. We continue to make the fact that autism spectrum disorders are reportable conditions of childhood known.''
West Virginia created the autism registry in 2004. Psychologists, pediatric neurologists and pediatricians are required to report any child they diagnose on the autism spectrum.
The registry only states that a case has been reported and from which county, and does not contain names. But the information is valuable because it is used by the state to apply for grants and resources to help people affected by autism.
"The more accurate numbers we have about how many people in the state are affected, the more funding we can apply for. Those numbers tie directly into funding, and it's critical to know exactly what the scope is so we can accommodate it,'' said Barbara Becker-Cottrill, executive director of the West Virginia Autism Training Center.
The Centers for Disease Control and Prevention says 1 in 88 children nationwide has an autism spectrum disorder.
"I think the CDC's 1 in 88 gives us an excellent number, but if we could say definitively `this is how many people in our state have autism' it would help with funding. Plus, it would be a way to track incidence of autism. We could say if we were increasing or decreasing. It'd give us an accurate picture of what's going on,'' Becker-Cottrill told the newspaper.
Other factors complicate the effort to obtain accurate numbers. Some families don't get a diagnosis or don't want to disclose that their child has a problem.
"They probably feel things are going well, or they're not knowledgeable. In some cases that's an issue,'' Becker-Cottrill said. "In other cases, we're missing some of the children who leave the state for a diagnosis. Sometimes it's difficult to confirm someone has an autism spectrum disorder.''
O'Malley estimates that there are 4,359 children with autism in West Virginia, based on the CDC's figure and the 2010 Census, which shows there are 383,570 residents under 18.