Thursday, August 11, 2005

VOODOO WORKS! (PART I)

A large chunk of my family's day -- every day -- is devoted to administering a lot of supplements to my son. It is all a part of the biomedical approach to treating autism spectrum disorders. There are permutations and adjuncts, but generally biomedical treatment consists of three elements: a gluten-free/casein-free ("GFCF") diet, use of dietary supplements and minerals, and chelation therapy.

My wife and I jokingly refer to what we do for our son as "voodoo," because some people seem to consider biomedical treatments to be the scientific equivalent of black magic. To be sure, biomedical treatment for ASD is a controversial topic; raise the subject with most "mainstream" doctors, and they start muttering something about the lack of double-blinded control studies. And, of course, those doctors are right. There are no studies proving biomedical’s efficacy, but neither are there studies showing it to be ineffective. Embarking on this road requires a parental leap of faith and the willingness to have your child be an anecdote. The only thing I know for sure is that it seems to help my little boy.

Several months ago, I attended a professional seminar and ran into a friend; let’s call him "George." I knew that one of his kids was diagnosed with ADHD, and he knew vaguely that my son had developmental issues. Over lunch, George asked about my son, and I brought him up to date. In the year or more since I last saw my friend, my son’s diagnosis had changed from being a "late talker" to now being on the spectrum, and we believed that thimerosal exposure had something to do with it. But it was okay, I explained, because we were making great progress using a biomedical approach. George’s customary smile rapidly turned downward and he began to shake his head.

George told me how he and his wife attempted biomedical treatment for their son, he thought too much money was being spent without any results in return. When I questioned him, George admitted that they just tried supplements for only a couple of weeks, and they had not strictly adhered to a GFCF diet, because his son didn’t like it. George’s real objections to the biomedical approach as well as the thimerosal-causation hypothesis, however, was based on what his son’s pediatrician told him. George had not read any of the scientific literature himself, and he did not know if the pediatrician personally examined any of the source literature or if he was simply relying on the stated position of the American Academy of Pediatrics.

My friend pleaded with me to stay away from chelation and turn to "proven" medications instead. Knowing that George’s son had been on Ritalin, I decided to avoid confrontation. I knew better than to argue about my belief that the currently available drugs may do a good job of attacking symptoms, but do little to address the underlying cause of the problem. Nor did I want to discuss how any medication’s impact on symptoms will eventually wane as receptors adapt, requiring the shift to yet another drug as a short-term fix. Instead of jumping into that debate, I tried to change the subject by asking George how his son was doing. He responded that things were indeed going well after they changed his son’s medication because Ritalin just wasn’t working anymore. That signaled the time for another change of subject and we spent the rest of lunch discussing LSU football (which can actually lead to more passionate debates than the thimerosal issue).

One of my favorite bloggers, Ginger Taylor, recently posted a terrific commentary, she calls "Duffy’s Dilemma," on decision making and biomedical treatments. I recommend it to anyone who is interested in the subject. In my next post, I plan to address this issue a little more.

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