Online Autism Fund: Godsend or Money Pit?

Autism Anecdotes Don't Get Insurance Coverage

Both donors and recipients on Lend4Health's blog swear by the "bio-medial" autism treatments the site advocates, often provided by the Defeat Autism Now!, or DAN!, group.

Jeanne, who asked that ABCNews.com not use her name to keep her as an anonymous donor on the site, has personal experience using the DAN! protocol with her 7-year-old son, who is autistic.

Jeanne said "he went from nonverbal, wearing diapers," at age 4, when he started the DAN! protocol, to speaking and attending school at his age-appropriate grade level.

"Obviously it's working or people wouldn't be doing it," Jeanne said.

But many health insurance companies aren't so enthusiastic. Elements of the DAN! protocol, such as blood allergy tests, endoscopies, diet counseling and a detoxification process called chelation, are covered by insurance companies for other conditions.

But without proof that the same treatments can help autism, the insurance companies won't pay.

"Insurance companies typically go by what is the accepted medical guideline," said Katherine Loveland, professor of psychiatry, behavioral sciences and pediatrics at the University of Texas Medical School in Houston. "[These treatments] may have some legitimate medical basis, but they haven't been shown to be effective and safe for this use."

She added, "Some of these treatments have potential risks, too," mentioning chelation as one such treatment.

But Loveland and her colleague Dr. Fernando Navarro, assistant professor of pediatric gastroenterology at the University of Texas in Houston, are attempting to do a clinical trial to test one of the most popular treatments on the DAN! protocol: restricting gluten, dairy or casein from a child's diet.

"We see at least one to three patients every week with autism," said Navarro, who will be studying gastrointestinal data gathered from the double-blind placebo trial of 40 children on different diets. Navarro has found that a disproportional number of children with autism show up with stomach issues.

"There are many families who tell you in great seriousness that when they have this child on this diet or that diet their child improves," Loveland said. "That's a very intriguing thing, and we don't know at this point to what [extent] it has to do with autism."

Loveland and Navarro hope to uncover whether diet changes have an effect on the so-called "leaky gut" problem attributed to many autistic children. Then, through behavioral interviews every two weeks, the researchers hope to see if the diet changes behavior.

Yet Loveland said she has seen even the most well-researched and gold standard care -- such as speech therapy or applied behavioral analysis -- go uncovered by insurance agencies.

"It's a confusing thing, partly because what the insurance companies will cover varies by state," she said, adding, "Now, we know that insurance companies can often be slow to change even when practice does change."

Keeping Hope Alive

In the meantime, mothers such as Heather Martin might turn to something like Tuncan's blog. So far, $650 has been donated toward Martin's $3,700 request for hyperbaric chamber treatments for her 6-year-old autistic son, Brock.

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