A task force of autism experts, legislators and parents last month recommended mandatory insurance coverage for the types of therapies that could benefit kids with autism.
“Arthur,” therapist CJ Stout said quietly.
“Arthur,” he said again. And again, and again.
Eight-year-old Arthur sat inches away. He alternately stared into the distance and squished his nose with his fingers. Six years ago, he was diagnosed with autism. He still hasn’t quite perfected the skill of responding to his own name. Stout was beginning a behavioral-therapy session with Arthur at the boy’s home in Seattle’s Madrona neighborhood. It’s an intensive treatment involving repetition and rewards. And national experts say it should be done about 25 hours a week with kids like Arthur.
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When Arthur was diagnosed, the neurologist told his parents, Ned Conroy and Katrina Davis, to start him on such therapies quickly if they wanted to see his condition improve.
The problem is that this particular therapy costs as much as $30,000 a year. And the family’s insurance plans don’t cover it. It’s a dilemma that affects thousands of Washington families because only two insurance companies in the state offer plans that cover the intensive care many kids with autism need, according to a recent report by a state task force.
Recently, state officials have begun to notice. The task force of autism experts, legislators and parents last month recommended mandatory insurance coverage for the types of therapies that could benefit Arthur. And the state Legislature this month is considering a bill that would improve early screening and diagnoses.
In the meantime, though, families are left either going without, going into debt, or going in on creative solutions. In Arthur’s case, that involved everything from a church to a rock star’s guitar.
One in 150 babies
Autism is a complex disorder, affecting social interaction and communication, and often exemplified by repetitive or restricted interests. The most recent national estimates say about one in 150 babies will develop autism, and about a quarter of those will never become capable of speech.
Whereas a typical child will intuitively imitate his parents, children with autism often have to be taught — on a one-on-one basis, over and over again, said Ilene Schwartz, a University of Washington professor of special education.
While there are a number of popular therapies, the one Arthur is receiving, applied behavioral analysis (ABA), is the most promising, Schwartz said.
For Arthur and his therapist, it means intensive work. Stout repeatedly directed him to the task at hand: learning the difference between before and after, first and last.
Stout arranged numbers in order: 10, 11, 12. “What comes before 11, Arthur?”
“Eleven, 10, 20!” Arthur replied.
Stout repeats the exercise over and over, until Arthur gets it right. “High-five!” Then he gets a short break. This goes on for two hours.
When Davis and Conroy first heard about ABA, they were told “the earlier the better.”
“And at that moment we were frantic,” recalled Conroy, who at the time worked for the Puget Sound Regional Council and had good insurance. His wife was working as a juvenile-detention counselor at the time.
But they soon found out insurance wouldn’t help.
Part of the problem is that some insurance providers consider autism a mental impairment, not a physical one, and that limits coverage. Some also exclude coverage because they classify ABA therapy as educational instead of medically necessary.
In addition, autism research is relatively new compared with studies of other conditions, such as Down syndrome, that have more established treatments.
“It puts you in despair,” Davis recalled.
But rich families aren’t necessarily better off. A shortage of experts means six-month waiting lists for qualified doctors. Then there are waiting lists for services.
The autism task force, created by the Legislature in 2005 to research ways to improve services, issued a draft report last month. Its No. 1 recommendation is requiring insurance companies to cover proven treatments. It also called for early screening — resulting in the bill this session — and the creation of regional autism centers.
“There’s a lot to do, and it’s not a simple fix,” said Maria Nardella, manager of the state Children with Special Health Care Needs Program.
Arthur’s family found itself in the middle of that conundrum.
Friends raise money
Davis said she and Conroy tried nearly everything to get Arthur treatment.
“I remember the moments, one by one, giving up on each of these doors,” Davis said.
Friends came to the rescue with what might be called a lemonade-stand approach. A friend suggested a rummage sale — a giant rummage sale.
“It started off small and just grew,” Conroy recalled. “Friends initiated it, and we were pulled along with it.”
They ended up holding it in a church gym. Scores of families hauled in stuff to sell. They raised about $12,000.
“It was beautiful and exhausting,” Davis said of the event. “It still makes me emotional.”
Then the family organized raffles. And silent auctions. A local marketing company donated time to design advertising posters and T-shirts to sell. Friends of friends of friends donated more items to auction off, including abstract art, and a guitar signed by Angus Young of the rock group AC/DC.
Eventually they raised $40,000, enough to pay for about half of Arthur’s treatment.
And they consider themselves lucky in other ways. Arthur has gotten intensive therapy at the UW, and in 2006 he started elementary school in a special program for autistic kids.
There’s still a long way to go. Arthur has less in-home therapy now: about 6 hours a week with Stout, plus whatever time Davis and Conroy can devote. But his parents say they are pleased with his progress.
“You do what your family can do,” Davis said. “You never feel like you do enough.”
Maureen O’Hagan: 206-464-2562 or firstname.lastname@example.org