‘Autistic and uncovered’

From the St. Louis Post-Dispatch:

Molly and Steve Schad say they have spent about $60,000 on various treatments for their son Harry (left) since he was diagnosed with autism five years ago. Bills under consideration in Missouri and Illinois would require insurance companies to provide some coverage for autism treatments.

Insurance companies are wary, and say mandating benefits could make premiums shoot up without necessarily providing better care. They say many autism treatments are unproven, and that much remains unknown about the disorder.

Meanwhile, parents like the Schads report that efforts to help their children are causing them financial hardships. In a recent study, parents described filing for bankruptcy, liquidating retirement funds, and stripping the equity out of their homes to pay for services not covered by insurance. Parents also reported losing income as they gave up their jobs to care for their children with autism.

Presently, about 30 states do not mandate insurance coverage for autism.

From ABC News:

Arizona Gov. Janet Napolitano has signed a breakthrough bill into law, forcing insurance providers to cover costly Applied Behavioral Analysis Therapy for children with autism with pricetags of up to $100,000 a year per child.

The measure had been opposed by business and the insurance industry, which argued that mandates cause higher insurance premiums for all. While roughly half of the states mandate insurance coverage for autism therapy, ABA therapy has rarely if ever been covered.

Earlier post: Arizona backs plan to insure kids with autism

Newsweek reexamines anxieties surrounding autism, a mystery with no known cause. The uncertainty is fueling an ongoing vaccine debate and harsh divisions within the autism community about how to view and treat the disorder. While some feel that autism is a disease in need of a cure, others are calling for neurodiversity, the idea that differences in human behavior should be celebrated.

“Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated,” says [Ari] Ne’eman, [president of the Autistic Self-Advocacy Network and a 20-year-old university student with Asperger's syndrome.]

And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne’eman’s fear? That autism will become like Down syndrome—essentially selected out of the population.

An accompanying chart of NIH research funding shows autism is expected to receive $128 million this year, or approximately $85.33 for each of the 1.5 million people diagnosed.

Of the conditions named, Down syndrome receives the smallest amount of research funds, both in the aggregate and on a per capita basis, with a total of $17 million or $48.57 per person diagnosed.

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Experts say it helps relieve boredom, encourages movement

From the Chicago Sun-Times

Experts are increasingly using the Wii video game in rehab therapy, helping people recovering from strokes, broken bones, surgery and even combat injury. They say it motivates people to work hard and reduces the tediousness of the task.

From the Wall Street Journal, U.S. News & World Report, and elsewhere:

Autism rates in California have continued to rise despite the removal of the mercury-containing preservative thimerosal from most childhood vaccines, according to a study in this month’s Archives of General Psychiatry.

“This study is very important for public health,” says Eric Fombonne, an autism researcher who heads the department of psychiatry at Montreal Children’s Hospital. He hopes the new evidence will encourage all parents to get their children vaccinated, and persuade parents of children with autism to shun chelation and other untested treatments.

… one recent bright spot in treatment is evidence that the earlier children get behavioral interventions designed to teach language skills, thinking, and social interaction, the better they seem to do through life. Scientists are now trying to push the limits of that theory, targeting even tiny babies, as young as 6 months, who are too young to be diagnosed with autism.

Earlier posts are numerous — here are just a couple:

• Autism study to treat infants without symptoms
•  Autism vaccine debate: A never-ending story

From the New York Times:

Nearly a year ago, New York made plans to ban the use of electric shocks as a punishment for bad behavior, a therapy used at a Massachusetts school where New York State had long sent some of its most challenging special education students.

But state officials trying to limit New York’s association with the school, the Judge Rotenberg Educational Center in Canton, southwest of Boston, and its “aversive therapy” practices have found a large obstacle in their paths: parents of students who are given shocks.

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From the Ottawa Citizen:

Deborah Fein, a clinician and professor at the University of Connecticut, is at the forefront of research that suggests 20 percent of children diagnosed with autism may recover. Her work is funded by the U.S. National Institute of Child Health and Development. She will be delivering the 2007 Pickering Lecture at Carleton University in Ottowa this week.

While some examples are more dramatic than others, [Fein's] work gives hope to the families who fear the devastating diagnosis means their child will be locked forever in their own world.

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