Fighting Autism Frustration|ABC 13

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Fighting Autism Frustration

posted 10:41 pm Mon November 12, 2007 - Across the ABC 13 Viewing Area

Autism is a condition we know relatively little about. But it's becoming all too common for parents, as more children are diagnosed with the disorder. Because we don't know what causes autism, and it affects each person so differently, treating autism can be as frustrating as the disorder itself.

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Since early intervention is so crucial to overcoming the condition, the challenge for many parents is finding a way to cover the cost of treatment. More on autism's other battle.

Dylan Trail is only in second grade, but he's already a success story. That's because Dylan had to work hard to get his seat in class. When Dylan was two and a half years old he was diagnosed with autism.

Wendy Trail, Dylan's Mom - "He was a head banger and nonverbal and we could not control him."

But the same boy, who once couldn't talk, doesn't even need an aide to get him through the school day.

Trail - "Actually in first grade, we got a letter from one of his doctors, a letter of remittance, so he's--we have a normal life."

But not all children with autism are as lucky as Dylan. Because not all autistic children get the benefit of early intervention. Most autism experts agree that recognizing the symptoms early and treating the disorder when the child is young, increases his or her likelihood of someday leading a normal life. But it's not that simple.

Chris Robin Dawes - "We thought that if we had the diagnosis of autism it would be easier to get there and actually we found out that when they have a diagnosis of autism it's automatically denied."

Chris Robin Dawes's son, Eli was diagnosed autistic last December. And while insurance paid for the diagnosis, it denied the doctor prescribed physical and occupational therapies.

Dawes - "The physical and occupational therapist both wanted to see him 3 or 5 times a week, a thousand dollars a week."

Because autism is considered a disorder, not a disease, most insurance companies in Virginia will not cover treatment, it's considered educational, not medical.

Dawes - "I don't know where the missing link is--doctors say we need it--why can't we get it?"

It's a familiar story for John Toscano who has worked in the autism community for 20 years.

John Toscano, Commonwealth Autism Services- "The insurance hurdle is still a significant one in Virginia--for therapies that are specific to autism, in particular the use of intensive applied behavior analysis."

It sounds technical, because it is. But research based applied behavior analysis--or ABA has been a life-changer for Dylan. Dylan attended the Blue Ridge Autism Center, a private day school for autistic children that uses ABA to teach kids as young as two years old.

Angie Leonard, Blue Ridge Autism Center - "ABA uses discrete teaching which is we break things down into discrete trials and teach it over and over again using positive reinforcement strategies."

The teachers are highly trained and work one on one with the children. Because of this the cost of the school is considerable. Blue Ridge is considered a bargain at $20,000 a year. Other centers like it cost upwards of $60,000. Still Rod Swearingen drives his son Trey an hour and 25 minutes from West Virginia to Blue Ridge.

Rod Swearingen, Trey's Dad - "He's just now starting to talk--he's been talking for about three or four months now. Actually two or more words at a time for certain things."

But the Swearingens are the lucky ones. Trey's school district in West Virginia is actually paying half the cost of tuition. Most families, like Dylan's, foot the bill themselves. Wendy and her husband worked two to three jobs a piece to make ends meet.

Trail - "What we finally ended up doing, once our bodies basically gave out was we took a second mortgage out on our house."

And it doesn't stop there.

Leonard - "We've had parents who've put on fundraisers, blue grass festivals, yard sales."

But for these parents, it's not the money they care about. How can you put a price tag on a child's future?

Swearingen - "The first time he said I love you daddy, was just -- made it all worth while."

For parents in similar situations as these families who may be watching this, you may ask what can be done to change our system? Autism advocates say Virginia lags behind other states in the union who are doing more to cover the cost of autism treatment.

Tuesday we will look into what lawmakers are considering that could make this situation different for Virginia families.

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