“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.
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.