CHARLESTON, W.Va. - While the Centers for Disease Control and Prevention reports that 1 in 88 children in the country has an autism spectrum disorder, the figures for West Virginia are a bit blurrier.
It's not that the state doesn't keep track of those identified as having a diagnosis on the autism spectrum.
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.
Autism Spectrum Disorders are a reportable condition, listed under administrative law.
Psychologists, pediatric neurologists and pediatricians are charged with reporting any child they diagnose on the autism spectrum, but a number of factors can prevent this.
"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.
"We try to get that word out to everybody who is diagnosing, follow up with phone calls, letters saying why it's important to get them on the registry," she 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.
"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," Becker-Cottrill said.
"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."
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.
"They probably feel things are going well, or they're not knowledgeable, in some cases that's an issue," she 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."