Autism's False Prophets: Third Essay (Offit)

Though I think that Offit has landed a few punches against some of "non-mainstream" autism folk (principally on the issue of rushing to causation), and that it might be to their advantage to try to answer some of his criticisms, he really doesn't have much to say regarding hope for the future of autism research. Though this book is an attack piece, one would have expected something to be said about the "good news" from his perspective. After all, in a war one is fighting for territory and/or honor. What is the "terrain" he would like to possess, as he sees it?

Well, he spends exactly four pages on it (pages 218-221). He begins by telling us that autism has a genetic component; then, after rapidly going through a few other things, he talked about an interesting 2007 study that found that there were abnormal proteins in the area beween nerve cells (the synapse) of autistic children. This implicated two proteins, neurexin and neuroligin. Maybe here there is a "pathway" associated with autism. But everyone should be patient. Autism is a complex genetic disorder:

"It's not just that there might be hundreds of different changes on one gene; there might be hundreds of different changes on many genes. For these reasons, even after the genetics of autism has been clearly defined, treatments might not be just around the corner" (p. 221).

Sounds like we might have some help, possibly, for the grandchildren of the childhood autism sufferers today...

The Other Approach

Offit is no doubt a crack vaccinologist. But parents of autistic children might be excused for reading a statement like the one just bolded and say, "Well, Dr. Offit, what do you recommend that I do?" I am not sure how often Dr. Offit has to confront that question directly. It might have been helpful had he told us the answer to that question. In any case, it is the lingering power of this question that has driven countless parents to seek physicians and others who hold out hope that some of the more debilitating symptoms of autism might be ameliorated or even removed. When you are dealing with people's vulnerabilities, you open up wide vistas for exploitation and mistake, even among well-intentioned people. But, a case could also be made that dealing with people's desperation is also one of the strongest motivations known to humans to improve the lot of fellow humans. Rapid advances in developing an AIDS antibody would not have been possible had not there been the pressure of desperate people on the medical establishment to do something for AIDS-sufferers. There is no reason to think it will be different for those whose children are autistic. Pressure, money, and desperate acts can predictably be expected. After all, people fight for their children as for almost nothing else in the world.

Alternative Therapies

So here is where we are with respect to the "alternative" therapies. Some are educational or behavioral; some are nutritional or biomedical; some are therapeutic. Because the chemical "pathways" of autism haven't been mapped out, there is no assurance that any or all of these 'alternative' therapies will help. There doesn't seem to be any "licensing board" for such therapies, and so the number is as many as Wall Street's unregulated financial devices. But some therapies (such as Applied Behavior Analysis) have a much better track record than others. In addition, since we have a "spectrum" of children afflicted with autism, some might respond to one treatment better than others. So complex is the world of autism that people are increasingly talking about different types of autism or various autisms. One often has to experiment to figure out what might "fit" best for one's child. Indeed, one might just decide that the child's autistic condition is a sort of strange but true gift from the universe and not pursue any therapies to try to change the condition. This is especially becoming the popular approach with respect to Asperger Syndrome folk. Many feel that their "Aspie" identity is a part of who they are; tampering with it by medication or treatments, which may make them less socially awkward or outcast, may be interpreted by some to rob them of their quintessential self.

Conclusion

Well, whenever I start talking about quintessential selves, I know it is about time to stop. But I want to conclude by telling a story about another area of intellectual inquiry that has fascinated me over the years. About 50 years ago, the scientific "establishment" completely dominated the intellectual debate "out there" on evolution or origin of life issues. The Darwinian model was so strong that any other approach was seen to be akin to believing in a flat earth. There was one organization that challenged this model--the Creation Research Institute. Staffed by a few people with Ph. D.s from second-rate schools in fields other than biology (sounds like Dr. Offit's characterization of a few "alternative" providers), the CRI argued for a 'biblical' story of creation. Their "evidence"? Well, they couldn't just cite the Bible, because, after all, they wanted to be seen as "scientists." So, they clung to a few fossils which seemingly were difficult to explain on a Darwinian model. The CRI folk weren't taken seriously by anyone.

Thirty years later we had the birth of the "Intelligent Design" movement, the cultured descendant of the CRI folk. Now, staffed by people with Ph. D.s from really good schools, with expertise across the scientific disciplines, and with funding galore, the Intelligent Design institutes have really made substantial inroads in American thought, even taking over a state board of education a few years ago. "Mainstream" science has harrumphed, but has also had to re-evaluate itself and its easy assumptions about the Darwininan model. Though I don't ever see the "mainstream" becoming proponents of "Intelligent Design," I do see how the defeats of one generation steeled the resolve of the "outsiders" to "get better degrees," and "do better research" and "get more money" and, finally to "influence the debate."

The analogy with autism research is, of course, not exact, but I would argue that the earliest autism researchers like Bettleheim, who are the butt of Offit's attack, are like those "Creation Research" or "Intelligent Design" researchers in the sense that they suggested hypotheses that probably couldn't withstand rigorous examination. Yet, as time goes on, I predict that the "non-mainstream" autism researchers and scientists will gradually make less dramatic claims for their work, that the real "crazies" among them will be put out to pasture, and that serious and focused work on the "alternative" therapies will actually help to shape the "mainstream" debate on the future of autism research and treatment.

But, at this stage of the game, bodies still litter the fields all around us. There is need to bind up the groaning wounded, and clear the bodies, and raise up new people who aren't caught in the battles of the past--who can conceive the future agenda with what I would call "passionate dispassion." Cooperation and hand-holding between the two sides is still a considerable ways off, but it is a vision that can just be seen, especially if you stand on your tippy toes. Though Drs. Offit and Wakefield may never embrace, the day is coming when both sides will not only embrace Bernard Rimland (who started the Autism Research Institute and the DAN! concept), but will agree about the "whole body" problem of autism. I think those days are not too far off....

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