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Autism Treatments Coming Along Slowly in State

As the country recognizes autism awareness month, the state is making progress, but researchers across West Virginia say there’s still a long way to go.

Programs

Alec Hildebeidel is a junior journalism student at Marshall University. He was attracted to Marshall by the radio program at the student-run station WMUL. But, perhaps more importantly for Alec, the Bel Air, Maryland, native was attracted to a program at the University to help students with autism.

When my parents were looking at schools they were looking in state at what was close, they looked at Marshall and said it's seven and a half hours away and is he going to be ok, not academically, but independently living. I went ahead and applied for the program and my parents said it was ok and my biggest transition was adapting to a new environment. – Alec Hildebeidel

The West Virginia Autism Training Center at Marshall University is one of a few facilities in the state that are helping those with autism spectrum disorders. Alec has Asperger’s and uses the training center to help him control anxiety and other social issues. He’s one of the many students at Marshall getting the help they need while taking college classes. Marc Ellison is the center’s Executive Director and says the program receives 75 applications a year, interviews 30 to 35 and selects only 10 to 12 people.

But the Autism Training center doesn’t just offer aid to college students. It also has staff that travels the state to work with 100 families for 9-10 months of the year. The staffers help not just family members, but also school personnel who work with their children to better understand autism.

Progress

Dr. Susannah Poe is the Autism Project Director for the Center for Excellence in Disabilities at West Virginia University. She says programs like Marshall’s go a long way toward helping families in West Virginia. She says treatment techniques used in the state have come a long way in the last ten years.

I think there has been more awareness for the need for evidenced-based treatment now, we are starting to see more treatment facilities develop across the state and more board certified behavior analysts are setting up practice in the state and we still aren’t where we need to be, but we’re gaining in those areas. – Dr. Susannah Poe

Treatment Access

While treatment techniques are improving, Poe says access to insurance coverage to help pay for those treatments is stunted. In 2011, lawmakers in West Virginia required insurance providers cover autism treatments, but the legislation allowed for some exemptions. Those exemptions mean only 23 percent of West Virginia families who have children dealing with autism spectrum disorders are covered.

The legislation excluded self-funded policies, which are all the larger-funded policies in the state, like coal mines and hospitals in the state and that kind of thing. Those members of those organizations were not required to offer that insurance and then probably the largest of all was that Medicaid was excluded. – Dr. Susannah Poe

Poe says the sooner those resources are obtained, the better the chances doctors have of helping the families. Both Poe and Marc Ellison, Executive Director of the West Virginia Autism Training Center at Marshall, agree adjustments are constant in the treatment of spectrum disorders.

Autism Brain-Study Underway at WVU

The Center for Disease Control reports that one in 68 children in the U.S. will have autism. That number jumps to 1 in 42 if we’re just talking about boys. And the risk increases if you already a have a child with autism. In West Virginia, new research is underway to try to get at how the autistic mind ticks.

Paula Webster at the Center for Neuroscience at WVU.

Paula Webster is a neuroscience graduate who works in the Department of Neurobiology and Anatomy at the Center for Neuroscience at West Virginia University.

While a psychology major at Wheeling Jesuit University, Webster discovered her three-year-old son was on the Autism Spectrum. She became a therapist who practiced applied behavioral analysis (ABA). But Webster wants to know more than how to intervene after diagnosis.

This is the first biomedical research into autism at the university. The study hopes to incorporate subjects in a wide range of ages—children through adults.

Webster works with Assistant Professor at WVU James Lewis, a neuroscientist. They taking and studying images of the brains of people with and without autism performing certain tasks.

The research isn’t just focused on what parts of the brain kids and adults with autism use, but also how they process information. It’s clear, said Webster, that there are many with autism who compensate to accomplish tasks. She hopes that by imaging high-functioning individuals with autism she may be able to start to characterize some of the methods of compensation they’re using.

Webster speculates it may be those mechanisms that allow them to be high-functioning.

“I think we can get at trying to characterize some of those compensatory mechanisms a little bit better,” Webster said, “and correlate those with sub-scores of autism scores to try to get some sub-types of autism.”

Webster hopes the research will go towards influencing the various therapies that exist as well as possibly providing a way to diagnose autism earlier, which in and of itself would be a powerful tool to help abate the condition.

Parents of Children with Special Needs Lean on Each Other

Often referred to as, ‘the greatest job in the world’, taking care of a child with special needs can be challenging for parent. Parents of children in Mercer County have formed their own support group.

Living in rural areas often means living significant distances from medical specialists, and sometimes treatment. For example the best form of treatment for Autism is applied behavioral analysis. While there are limited specialists across the state, there is not a single specialist south of Charleston in West Virginia.

Support groups are no different. There are very few in the region.

“Unfortunately where we are in a very rural area there’s not a lot of access to support groups like you would see in bigger cities,” Carla Poseno said.

Carla Poseno is the Vice President of the K.I.D.S Project.

“So what we decided to do is make an all-inclusive special needs support group to work in the community,” she said.

While the support group is meant to help parents and caregivers of children with special needs, the group is also to help remind the children that they are kind, important, determined, and strong … which is what the “KIDS” in “K.I.D.S Project” stands for.

“It’s really helped me because my daughter is kind of my full time job,” she said. “Best job on earth but at the same time it can be stressful.”

Poseno knows that raising a child with special needs isn’t always easy.

“Sometimes it can be hard it can be stressful,” Poseno said. “You have sleepless nights there are days that sometimes you are lucky to get a shower because your child needs so much from you.”

“It’s worth the fight to fight for your kids when they have special needs.”

Children with various diagnoses and disabilities are all welcome and so far parents of children with special needs that range from autism, to spina bifida, to bipolar have attended meetings.

Kristal Jones, coincidentally a McDowell native, is the president of the group.

“The very first meeting it struck me that this is something that we really need in our area,” Jones said.

The group is also a place for parents and caregivers to share resources and advice. Jones’s daughter has A.D.H.D.

“If you don’t request certain things they may not know that your child needs that additional help on testing per say,” she said.

The group meets every fourth Monday of the month at Princeton Public Library. The next meeting on December 30, however, will be at the Glenwood Green Valley Fire Department. The K.I.D.S project is hosting a holiday party for families with members with special needs.