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Autism: Kids put at risk

Desperate parents try alternative therapies that aren't based in science and may hurt kids, an investigation finds.

December 07, 2009|By Trine Tsouderos and Patricia Callahan >>>
(Chris Sweda / Chicago Tribune )

James Coman's son has an unusual skill. The 7-year-old, his father says, can swallow six pills at once.

Diagnosed with autism as a toddler, he had been placed on an intense regimen of supplements and medications aimed at treating the disorder. He was injected with vitamin B12 and received intravenous infusions of a drug used to leach mercury and other metals from the body. He took megadoses of vitamin C, a hormone and a drug that suppresses testosterone.

This complex regimen -- documented in court records as part of a bitter custody battle over the Chicago boy between Coman, who opposes the therapies, and his wife -- may sound unusual, but it isn't.

Thousands of U.S. children undergo these therapies and more at the urging of physicians who say they can successfully treat, or "recover," children with autism, a disorder most doctors and scientists say they cannot yet explain or cure.

After reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on flawed, preliminary or misconstrued scientific research.

Lab tests used to justify therapies are often misleading and misinterpreted. And though some parents fervently believe their children have benefited, the investigation found a trail of disappointing results from the few clinical trials conducted to evaluate the treatments objectively.

Studies show that up to three-quarters of families with children with autism try alternative treatments. Doctors, many linked to the influential group Defeat Autism Now, promote the therapies online, in books and at conferences.

The investigation found children undergoing day-long infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful.

Last year, the National Institutes of Health halted a controversial government-funded study of chelation before a single child with autism was treated. Researchers at Cornell University and UC Santa Cruz had found that rats without lead poisoning showed signs of cognitive damage after being treated with a chelator.

Doctors associated with the autism recovery movement often say they know that more research is needed but that children need help now.

"We can't wait for 10 or 20 years," pediatrician Dr. Elizabeth Mumper, medical coordinator for the Autism Research Institute (the nonprofit parent organization of Defeat Autism Now), testified in a special federal court.

Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement: It's as if their child has jumped off a pier. Science hasn't proved that throwing a life preserver will save the child, but they have a duty to try, right?

Critics say that's the wrong way to think about it.

"How do they know the life preserver is made of cork and not lead?" said Richard Mailman, a neuropharmacologist at Penn State University. "However desperate you are, you don't want to throw your child a lead life preserver."

"Dangerous experimentation" is how pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics, describes use of these unproven therapies.

One in 100 U.S. children is diagnosed with autism spectrum disorder by age 8, according to the U.S. Centers for Disease Control and Prevention. Though behavioral therapies can help, there are no cures for the disorder, which is characterized by communication problems, difficulties interacting socially and rigid, repetitive behavior.

But clinicians and others in the recovery movement readily offer treatments and hope.

More than 1,000 parents have contacted the Autism Research Institute to say their children have recovered or nearly recovered from autism, Jane Johnson, executive director of Defeat Autism Now, wrote in an e-mail.

"It is growing by word of mouth," Johnson said of the movement. Johnson and Teri Arranga, director of Autism One, another group in the recovery movement, said solid science supports their approach; Arranga sent a list of hundreds of studies.

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