Bill Long 10/24/08
I have only been learning about autism in a "part-time" manner for about 2 1/2 years, but I have increasingly become intrigued by those who study autism, as well as those who are studied. Battle lines are deeply drawn in the field, though I am still trying to understand better the nature of the venom that is directed by many on both sides towards each other. Though the issue doesn't simply boil down to vaccines or mercury, a lot of the animosity, I believe, comes from the impatience felt by some parents at the slow pace of research as well as their suspicion that important data has been "covered up" or "hidden" by mainstream (i.e., US Government) sources. I want to understand the emotions of autism, to be sure, but in this essay I would like to lay out some persistent questions that have been on my mind for many months, and for which I would like some answers. Since I am at an autism conference in San Diego this week, I will try to find the answers before I go home.
1. Let's begin with a question from biochemistry. How does the "methylation cycle" work in a human, beginning from the ingestion of a bite of food to the ultimate production of glutathione (if that is the "end" of this cycle)? That is, I have heard presentations and read articles arguing that one problem that many (how many?) autistic kids experience is a failure to methylate properly. Thus, take me from that first CH3 molecule, tell me how it 'breaks off,' if that is what it does, how it does or doesn't attach in what parts of the body, and then tell me further what happens after that. From what everyone says, comprehending this process is absolutely essential to understanding the biochemistry of autism. Will someone please go slowly and 'splain it?
2. The second question concerns chelation, a therapy long-known for removing heavy metal from a person's system but only performed on autistic patients in the last decade. Does the validity of chelation in autism rest on a theory of thimerosal toxicity? If not, does chelation, in order to be defended as a practice, require that the autistic kids have a higher body burden of mercury and other heavy metals than neurotypical kids? Where does the autism "world" stand now on the issue of whether autistic kids bear higher body burdens of mercury? I think the studies aren't conclusive...
3. It seems pretty clear to me that hundreds of doctors and thousands of parents believe that "biomedical treatments," ranging from dietary intervention to therapies such as chelation and even hyperbaric oxygen treatment, help to diminish their kids' autistic symptoms. But more "mainstream" physicians and others, as exemplified in the recent book by Dr. Paul Offit, claim that these "alternative" diets and treatments do no good--because there are few if any conclusive studies demonstrating efficacy. Should one side continue to rely on parental self-reporting or is there a research consensus that is starting to emerge on diets and therapies for autism?
4. Is it still useful to try to speak of a cause or causes of autism, given that most efforts to isolate a single or even a group of causes in the past have foundered?
5. I am confused about the issue of the genes and the brain. One side in the "Autism Wars" claims that the principal problem posed by autism is a genetic one; the other claims that there have been considerable environmental insults or triggers that may have activiated a genetic propensity or pre-disposition. When we speak of genetic causation, what do we really mean? Is it "in the brain," as I have heard? I thought that the genes were distributed throughout the body. So, what does a "genetic causation" theory consist of?
6. It is too soon to say that a consensus is developing on the question, but in my judgment the following consensus should be developing--that autism results primarily from genetic pre-disposition to autism being triggered by various environmental assaults/insults. But how to we identify and calibrate these environmental insults? Some of them are from the mother, to be sure, and others of them are from factors "out there," such as in the air we breathe, the water we drink, etc. How does one diagram or measure the comparative "badness" of the insults from each source? And, maybe even before we calibrate, we should identify what these are...
7. The allegations are made by the "anti-biomedical treatment" folk that the biomedical proponents are basically preying upon vulnerable people by prescribing countless and costly regimens of tests, medications, diets, supplements, treatments that in most cases won't improve a person's situation and, in many cases, will make it worse. How is one to respond intelligently to this kind of allegation? Does one just dismiss it as hogwash? Or should there be an attempt to identify "evidence-based" or "well-grounded" therapies/diets and then separate these from more controversial or problematic approaches? It seems that one should have a "gold standard" and then other, lesser, standards in mind...
Well, these are my questions after having "read around" and listened to many people for more than two years. I have many other questions, to be sure, but these are enough for one day...