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How science is being hijacked to sell parents questionable, and potentially dangerous, autism therapies for children

“People are abusing science for the treatment of autism.”

That’s one of the quotes from last weekend’s chilling two-part investigative series (here and here) in the Chicago Tribune that documented how thousands of desperate parents, often encouraged by physicians who should know better, are subjecting their children with autism to unproven and potentially harmful therapies.

Scientists don’t know what causes autism, a brain disorder that may affect as many as one in 100 children in the United States, and that is most commonly characterized by problems with communication, difficulties with social interactions, and obsessive, repetitive behaviors.

What scientists do know is that there is no known cure for autism — a reality that has, unfortunately, left the door wide open for medical charlatans pushing a wide variety of treatments that range, as Tribune reporters Trine Tsouderos and Patricia Callahan point out, “from sauna treatments to chelation to the ingestion of worm eggs.”

Children as guinea pigs
Here are some examples of the types of dubious and dangerous experimentations that are sold to parents as medical therapies:

The Tribune found children undergoing daylong 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, at a cost of thousands of dollars. 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.

Cherry-picking science
The people pushing these therapies usually cite scientific studies to back up their claims. The problem is, the studies they cite say nothing of the kind — as the authors of the studies themselves repeatedly try to point out.  

Here’s one example from the Tribune story:

A geneticist and his son who promoted treating children who have autism with a testosterone inhibitor had based their protocol, in part, on the work of Simon Baron-Cohen, a psychopathologist at England’s University of Cambridge who has explored the role of the hormone in autism.
Yet Baron-Cohen told the Tribune that the idea of using the drug this way “fills me with horror.”

Undisclosed conflicts of interest
One of the many disturbing (but, I have to admit, not unexpected) findings of the Tribune investigation was how some of the people promoting these unproven therapies have financial links to companies who profit from the therapies — links they fail to report when publishing their own studies.

The Tribune reports, for example, that two of the doctors who published a study “that found mild pressure and mild extra oxygen led to mild improvement of some symptoms of autism … are listed as medical advisers to the International Hyperbarics Association on its Web site, which promotes the ‘healing magic of hyperbaric oxygenation.’ Neither doctor disclosed that in the study, which the IHA helped fund.”

When the Tribune asked one of the doctors, New Jersey physician Dr. James Neubrander, about the omission, he said that it was “not a purposeful deception.”

It’s not just the parents of children with autism who need to read these two Tribune articles. So do the rest of us, who all too often, unfortunately, fall for unproven therapies for a wide variety of illnesses and disorders.

Caveat emptor.

Comments (6)

  1. Submitted by Lisa Randall on 11/25/2009 - 05:40 pm.

    It’s about time some light was shined on those who prey on autism parents. It’s particularly reprehensible that the authority of real scientists is borrowed to lend credibility to treatments that can actually be harmful.

  2. Submitted by Nancy Hokkanen on 11/27/2009 - 07:22 pm.

    Journalism’s investigative lights should be shined upon the backstory behind those Chicago Tribune articles.

    Start with cronyism — a reporter’s friendship with Alison Singer, who works for vaccine developer Paul Offit. Add deliberate omissions, some of which are chronicled at the Age of Autism blog by attorney Kent Heckenlively.

    Next, talk with just one of the “real scientists” such as researcher Dr. Martha Herbert of Harvard and find out how her words were manipulated. Not to mention the number of scientists whose words were omitted, or those who were referred but were never contacted.

    Finally, talk with many more of the parents who are using biomedical autism treatments that are standard practice for other related disorders. Ample evidence on the benefits of hyperbaric oxygen therapy abounds if one will only take time to look.

    I urge readers to do their own investigations into the science behind autism treatments. One certainly will not find unbiased reporting in the mainstream media.

  3. Submitted by William Wallace on 11/30/2009 - 09:32 am.

    ‘The Tribune reports, for example, that two of the doctors who published a study…’

    Was this in a peer reviewed journal?

    If you think this is bad, you should see what is going on with something called climategate. Google it, somebody at minnpost should write about it.

  4. Submitted by Dan Landherr on 11/30/2009 - 11:33 am.

    Lookup any quack cure throughout the ages and pretty much all of them have been touted to help autism. There is a pseudo-scientific explanation that makes each and every one of them seem plausible.

    Anyone who suggests parents perform “their own investigation into the science behind autism treatments” has an agenda. Unless the parent has a medical degree and a specialty this is nearly impossible. The information on the internet cannot be trusted as there are no citations, links to original studies, etc. There are hundreds of autism websites with claims, counterclaims and hidden agendas (buy my cure!) that only serve to obscure and cast doubt on all research. Most parents of autistic children barely have enough time to keep up with day to day issues, let alone take on a side hobby of medical research.

  5. Submitted by TD Mischke on 11/30/2009 - 11:33 am.

    I’m with you, Nancy. This piece fell far short of thorough reporting. There’s so much more to this story.

  6. Submitted by Nancy Hokkanen on 11/30/2009 - 02:27 pm.

    Dan, biomedical autism treatments ARE being reserched and investigated by prents with medical degrees and specialties.

    Many of these pioneers do so because their children are affected. Where’s the profit incentive driving pharma research for kids whose myriad disorders require so many lab tests and so much monitoring? Parents care, and share helpful medical data freely.

    For example, take Johns Hopkins neurologist Jon Poling and his wife Terry, an attorney and ICU nurse. Dr. Bernard Rimland. Dr. Bryan Jepson. Or the late Dr. Alan Clark and wife Lujene, a nurse and forensic accountant, who founded the website. (Remember FOIA?)

    It’s so easy, speedy and self-solving to write off subjects without delving into the reality. Please, for the sake of these sick children, look into the evolving science far beyond MSM sound bites.

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