Since I have Asperger’s Syndrome, a high functioning form of autism, I am interested in research studies on autism. Now and them I have bought both popular-level and middlebrow magazines on autism at bookstores. Unfortunately what I find is a hodgepodge of research, some well-grounded, some of dubious scientific value. There is also the implicit assumption among some so-called advocates of the autistic that no one has a right to criticize anyone else’s theory about autism, its causes, or its treatment. How did the current situation come about.
Historically, parents of autistic children have been frustrated by dubious theories of big names in psychology. Bruno Bettelheim is the most infamous, having argued that children became autistic due to a lack of affection and attention from parents–the parents were supposedly “distant.” This clearly false and destructive theory of autism did real harm to the parents of autistic children and held back advances in treatment. Some of the most successful autistic people, such as the animal scientist Temple Grandin, were helped not by the medical and psychological establishment, but by a dedicated mother who encouraged Temple and did not give up on her even while doctors did. There is a long tradition of parental activism in autism, as parents, frustrated by the scientific establishment’s inability to help their children, have taken matters into their own hands.
This is fine up to a point. Autism is a multi-faceted, spectrum disorder, and is different in every individual. There is no evidence that the same parts of the brain are affected in different autistic people. Treatments that work on one autistic child may not work for another, and some autistic children cannot be helped with current therapies (hopefully they can be helped in the future). If a method a parent or parents use to help their autistic child works, more power to them.
The difficulty is when the well-meaning defenders of autistic individuals make claims based on faulty research. An example is the claim that thimerosal, a mercury-based preservative found in many vaccines, is at least one cause of autism. Intuitively this seems reasonable since mercury is a known neurotoxin, and vaccines have been admitted in some cases to cause brain damage. However, there is no sound scientific study supporting a causal link or even a correlation between thimerosal levels in vaccines and autism. One 1998 article in the prestigious UK medical journal The Lancet has since been retracted, and a recent study has shown that even babies exposed to much higher levels of thimerosal than children receiving vaccines are no more likely to have autism than other children. Many in the autism community are not convinced, or they appeal to a government conspiracy to hide the true data. But most conspiracy theories are irrational and are not based on sound evidence. I am far more willing to trust the many scientific studies showing no link between vaccines and autism. The greater number of cases of autism (and Asperger’s Syndrome) in the last thirty years is more likely due to broader diagnostic criteria and to a greater recognition of autistic symptoms among health care providers. And to claim that thimerosal causes autism does not make sense given that the vast majority of vaccinated children are not autistic. Causal claims, or even correlational claims, require more substantive evidence.
It is wonderful that so many well-meaning people are advocates for the autistic. However, they should realize that it only hurts their cause to oppose good science and spout conspiracy theories when there is no evidence of such. And in their own articles on successes with their children, parents should add the caveat that not all autistic children will benefit from the method they used. To their credit, many parents writing on autism do make this disclaimer. Let’s base advocacy on sound scientific research.