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Intensive therapy can help 'rewire' child's brain
Monday, November 15, 1999
By CAROL SMITH
ABA is an intensive, one-on-one form of therapy that helps "rewire" the brains of children with autism through repetitive teaching and positive reinforcement.
Therapists with training in ABA are in such demand they've started guarding their phone numbers to avoid disappointing parents who stand no chance of getting their services.
Frustrations such as these are driving a grass-roots organization effort by parents, who are trying to improve services and options for children with autism.
They are also forcing parents to do battle with insurance companies, school districts and state agencies to try to get services to help their children.
"About 10 percent of parents in the (autism) clinic are engaged in some type of legal or adversarial interaction over their children's educational placement," said Dr. Alan Unis, psychiatrist and autism expert at the University of Washington.
"It's as bad as the civil rights movement in the 1960s. If these children don't get an appropriate education, the risk of them spending the rest of their lives in institutional placements is much higher."
ABA is widely recognized as the treatment with the most scientific credibility for helping children with autism, said Geraldine Dawson, professor of psychology and director of the autism project at the UW.
Twenty years ago, the prognosis for children with autism wasn't good, Dawson said.
Today, if a child is identified by age 2 or 3 and given high-quality, intensive early intervention -- at least 25 hours of one-on-one therapy a week for two to three years -- about 50 percent respond really well, she said. "They have an average IQ point increase of 28 points," she said.
That's enough to move a child from the mildly retarded to normal intelligence range.
But such interventions are costly and time-consuming.
"One of our concerns is the research seems to point to certain minimum number of hours (of treatment to be successful,)" said Nellie Allnutt, social services coordinator of the Developmental Disabilities Division, King County. "We're very concerned we won't be able to meet what's defined as best practice for these kids."
Current funding through state and federal developmental disability resources allows only for a few hours a week for those children who qualify, she said. Most insurance plans don't cover ABA.
Many parents want more, and they are afraid if they wait to get it, they will miss the window when their children's brains can still be reprogrammed.
Tracey Newsome is one who didn't want to wait. Newsome's younger son Elliot, 3, was diagnosed with "Pervasive Developmental Delay," one of the disorders on the autism spectrum, about eight months ago.
"At about 18 months, he wasn't doing the things we thought he should be, like pointing to stuff," Newsome said. "I'd say, 'Point to your eyes, point to your nose,' and he wouldn't do it."
At first Newsome tried not to compare his progress with his older brother's, figuring all siblings are different.
"But in your heart, you know it's not just a second-kid thing," she said.
Newsome was one of the lucky ones. She was able to find a therapist to begin doing behavioral therapy with Elliot.
"The ABA approach has been incredible," she said. "It's like a huge light bulb going on.
"Before, it was like he didn't even know what we were saying. He gets it now."
Children with autism lack the necessary neural connections to learn automatically, but those connections can be established through repetition and reinforcement, Dawson said.
Newsome, a former Microsoft manager, is working now to help other parents get access to behavioral therapy. Together with several other Microsoft parents (who also have children with autism) and professionals, she has helped form Northwest Behavioral Associates, a non-profit program to provide educational and behavioral support services to children with autism.
The group, which provides therapy and school-consultation services, is also putting together a tutor-training program to increase the pool of people qualified to work with children with autism.
The group joins other established parent organizations, such as FEAT (Families for Effective Autism Treatment), which are also working to increase training, awareness and funding for autism therapy.
Other institutions are responding to increased demand for services from parents as well. Children's Hospital, for example, is developing a new autism program in collaboration with the UW's Center on Human Development and Disability, to provide comprehensive services for children with autism.
The center, which will be directed by Dawson, will certify and train therapists. It also will provide ABA therapy, as well as other services, including school interventions, for children with autism.
Therapists themselves are organizing. The Northwest Association for Behavioral Analysis has formed a committee to try to bring a national certification test to Washington. So far, five states, including Florida and California, have certification standards for behavioral therapists.
"We need to discriminate between the qualified and the unqualified," said Michael Fabrizio, a trained behavioral therapist in Seattle.
Certification is critical for increasing insurance coverage. Currently, many parents can't get insurance to pay for therapy because behavioral intervention doesn't fit into conventional categories of treatment.
"It's not a medical model where you go in and get a shot," he said. "And it's not a typical therapy model, like speech therapy, where you get an hour a week."
Insurance companies blanch at the thought of paying for 20 to 40 hours a week of therapy, at an average cost of $30,000 a year, he said.
Advocates for people with autism are glad to see the increased focus on intervention in a population that can't speak for themselves.
"Because of their poor ability to communicate, (children with autism) tend to be misunderstood and pushed aside," said Audrey Horne, president of the Autism Society of America. "But they are treatable and educable."
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And special education preschool programs that offer even limited ABA services are having to put students on a waiting list for the first time.
Tracey Newsome hugs her younger son Elliot after he did well working on a counting exercise with her. Three-year-old Elliot was diagnosed with "Pervasive Development Delay," one of several autism disorders, about eight months ago.
Paul Joseph Brown/P-I
The technique takes advantage of the fact that the brain's circuitry is still under construction in the early years of life. Children born with a cloudy cataract in one eye, for example, will develop normal vision if the cataract is removed before age 3. If it's removed after age 3, they will remain blind in that eye because the neural pathways that process visual information in the brain were never stimulated. Like muscle cells that get stronger in response to exercise, brain cells respond and adapt to stimulation from the environment.
Elliot Newsome's "Applied Behavioral Analysis" treatment includes physically redirecting his attention to an exercise, as illustrated here with therapist Shari Mendez.
Paul Joseph Brown/P-I
P-I reporter Carol Smith can be reached at 206-448-8070 or carolsmith@seattle-pi.com
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