Hope for autism seen
Autism expert Patricia Wright wants people to understand autism no longer is a hopeless condition.
The message has shifted over 20 years, said the Easter Seals' national director of autism. "It used to be a hopeless diagnosis. You would get this sentence called 'autism.'"
Early identification has changed that, she said, explaining that until about 1985, autism wasn't diagnosed until children were 5 or 6 years old.
A neurological disorder, autism can now be detected at 14 months of age, yet the average age of diagnosis is about 4 1/2 years old, Wright said.
"Part of it is we're hesitant to give that diagnosis because people are so fearful of it," with parents either not getting information or having old perceptions, she said.
"With good treatment intervention, people with autism can be productive, meaningful contributors to society," she emphasized.
Wright, now living in Chicago, was in Hawaii from 2001 until last year earning a doctorate at the University of Hawaii and working as autism specialist for the state Health Department's Child and Adolescent Mental Health Division.
April is National Autism Month and she was here this week training Easter Seals Hawaii therapists, conducting workshops and giving lectures.
Specialists agree the prevalence of autism has increased, from three or four cases in 10,000 people to one in 150, Wright said in an interview.
But she said, "There is not agreement within the scientific community if there is more (autism) or it's just better identifying."
She said there are many effective treatments for autism and the best is early intensive treatment, "which equals significant expense."
At least 25 hours per week of intensive treatment on a one-to-one or one-to-two basis are recommended, and can cost as much as $50,000 a year, she said.
Kalma Wong said two of her four children, ages 8 and 6, have been diagnosed with autism and need high-cost therapies that aren't covered by insurance. "I just sort of pray," she said.
She initiated a bill known as Dylan's Law in this year's Legislature to try to address needs of children with autism.
Legislators have been considering bills and resolutions to mandate benefits for people under age 21 with autism disorders, ask the state auditor to study impacts of such coverage, or establish a task force to see what can be done to meet the needs of children with autism.
"When you figure it out over a lifetime, it's (insurance coverage) cost-effective," Wright said. "They learn independent skills so they don't need continued lifelong support."
Other states and insurance companies also are looking at coverage and trying to figure out how to pay for effective treatment for autism, she said.
Wright said everyone in the field is watching the first autism-prevention study by University of Washington researchers.
Siblings of children with autism have higher risk of autism because of genetic disposition, she said. So the researchers are studying siblings of 200 infants with autism to assess whether early intervention can prevent the disorder in the siblings.
Controversy has flared over vaccines as a possible cause of autism, particularly after a federal court decision in Atlanta that a child developed autism from vaccines.
However, Wright said, "a lot of research has demonstrated vaccines do not cause autism on a population level." The U.S. Centers for Disease Control and Prevention is continuing to look at this issue and is the best source of information, she said.
Autism is part of a group of disorders known as autism spectrum disorders. The cause isn't known, "so there is a lot of conjecture," Wright said.
Regardless of the cause, "we know people with autism need services and support and that's what Easter Seals does," she said, adding that a lot of attention is given to children but that they grow into adults who also need services.
"Entitlement services end at age 21, then they have 60 years of life. They need significant support. They are a severe burden on families."
For more information, call Easter Seals at 536-1015 or visit eastersealshawaii.org.
