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State’s autism registry facing difficulties in reporting

By Candace Nelson

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.

It does.

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."

Though disorders can sometimes be difficult to diagnose, signs and symptoms are always apparent before the age of 3, according to Becker-Cottrill.

"If a child is developing normally up until 3, then something switches, we're not talking an autism spectrum disorder," she said. Doctors are doing an 18-month checkup, where they check for autism spectrum disorders. They are working toward diagnosing earlier, O'Malley said.

Hallmarks include difficulties in social areas of life, communication and restricted and repetitive repertoires. Another is joint attention; if a child is not engaging or trying to get parents' attention for something they might find interesting, that's a sign, O'Malley said.

Slow development of speech or a lack of development of speech is an indicator, as well as children who are not actively engaging in side-by-side or interactive play. There's no clear indicator of a cause, Becker-Cottrill said. While it seems as though there is a genetic component involved, research is currently looking into possible environmental influences, as well, she said.

"What's interesting is that autism is such a wide spectrum," O'Malley said. "What holds it together are deficits and problems in social skills and communication. You may have someone who has no verbal communication - maybe communicates through pictures or sign language or augmentative devices - and is perhaps somewhat social.

"On the other end, you may have someone who is highly verbal and very socially awkward - those kids may fall in the higher end of the spectrum. But the commonality is that problem in the area of social development."

O'Malley uses 2010 Census figures to determine how many children in West Virginia may be on the autism spectrum.

"If you look at the 2010 Census, there are 383,570 individuals under 18 in the state. If you do 1 in 88, which the CDC says, then we have about 4,359 children with autism. That's the only Census data available to us right now," she said.

The National Survey of Children's Health released data last month showing that 1 in 50 school-aged children (ages 6-17) had an autism spectrum disorder. The findings are based on parent reports through telephone surveys. While this figure is significantly higher than the CDC's numbers, Becker-Cottrill said that could be due to different methods. Regardless, autism spectrum disorders are increasing over time, she said.

The National Survey of Children's Health increased from 1.2 percent in the 2007 survey to 2 percent in the 2011-12 survey.

The CDC showed that 1 in 150 8-year-olds born in 1992 and 1994 had an autism spectrum disorder. West Virginia's data was factored into those statistics. One in 110 children born in 1998 had an autism spectrum disorder. And 1 in 88 children born in 2000 had an autism spectrum disorder. Data collected by the Department of Education in each state shows similar increasing trends, Becker-Cottrill said.

As numbers increase, Becker-Cottrill said it could be due to groups that had gone previously undiagnosed now that diagnosticians are becoming more aware of autism spectrum disorder symptoms.

To accommodate the growing number of children diagnosed with a disorder, appropriate services are necessary to adequately serve children and their families.

The West Virginia Autism Training Center offers positive behavior support trainers across the state that provide direct services to families.

Their model aims to get to know families and plan activities and a support plan around that. The center looks at academics, social skills and other factors to comprise the program. Funding for this program comes through the West Virginia Legislature.

Contact writer Candace Nelson at or 304-348-5148. Follow her at


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