A while back, Historiann recommended Paul Offit‘s book, Autism False Prophets – Bad Science, Risky Medicine and The Search for A Cure. I agree with her assessment: this is a phenomenal book. He should be the one invited on Oprah or Larry King or any other peddler of unfounded woo instead of the usual crackpots they have when it comes to science or medicine.
Paul Offit is a great writer and storyteller, in addition to his medical credentials. His book recount the story of the different, and all clearly debunked, theories and cures offered by less than ethical characters for autism. Offit’s book covers all the way back to Bettelheim’s "refrigerator mothers" up to Jenny McCarthy’s special yeast-free, dairy-free diet that supposedly cured her son of autism. Of course, the book is largely devoted to the appalling claims, also completely debunked, that MMR vaccines, then mercury / Thimerosal caused autism and the social movement that promoted this falsehood.
It is indeed a fascinating story for a social scientist:
- a mysterious conditions whose origin and cause are initially quite mysterious (and may still be, as the book explains: autism is probably genetic but in complex ways, so that a clear and complete genetic mapping and treatment will not be available anytime soon);
- desperate parents who have to deal with this condition that is emotionally and financially taxing with limited hope and prospects;
- a medical community that does not appear responsive enough;
- charismatic doctors who appear as courageous and caring Davids against the ugly and corrupt "medical establishment" (and the even bigger evil of the pharmaceutical companies and vaccine manufacturers) and offer explanation and hope;
- mass hysteria against vaccination promoted by the media and irresponsible politicians (special mention goes to Dan Burton and Robert Kennedy Jr, but they are not the only culprit) that care little about the science of autism and peddle nonsense;
- the creation of a tight-knit community that sees itself as besieged by the medical establishment, function as a closed in-group, endorses conspiracy theories and treats the "courageous" as its heroes and reserves special vile and nasty threats to anyone challenging the groupthink present in the community; the scientists and other parents who challenge such nonsense are seen as shill and sellout: of course, they have to be in the pocket of the pharmaceutical industry (actually, the book shows that the only corrupt individuals on the take are the "heroic" doctors and scientists on the anti-vaccination side);
- a few greedy individuals and groups who stand to benefit financially from all these ridiculous "alternative" treatments for autism (and they often happen to be the "courageous" doctors… what a coincidence);
- a cultural climate where nonsensical beliefs are treated as equivalent to solid scientific knowledge (after all, we are still debating evolution) and where claims to expertise are both widespread (Jenny McCarthy can claim expertise on autism) and dismissed when they come to the reviled medical establishment;
- a second layer of cultural beliefs that promote "alternative" medicine and "natural" remedies… newsflash: there is only one type of medicine. Evidence-based medicine, peer-reviewed, replicated, through specific research protocols… every thing else is not "alternative" and not "medicine".
When you put all that together, it is not surprising that so many people still believe that vaccines cause autism (or other conditions for that matter) and refuse to vaccinate their children. It is why it is still largely impossible to have sensible scientific discussions without religion, politics, and new age stuff to get mixed up it it.
In many ways, the nastiness of the anti-vaxers and their tactics are reminiscent of the anti-choice movement (except they have not killed anyone). Paul Offit receives threats in various forms. He had to have bodyguard protection for a while. And he is not the only one to be have been on the receiving end of terrorist tactics. It is not surprising either to find fundamentalist religious elements and zealots in the anti-vaccination movement. This fits with the rejection of science and the scientific method with their lack of final certainty.
This fundamentalist religious element is actually very visible in the way these parents or so-called experts describe autism: the descent into autism is seen as a loss of soul. The autistic child has the characteristics of a possessed child (some parents have tried exorcism) whose body needs to be purified of the poison (be it the MMR vaccine or mercury or Thimerosal or yeast or dairy or whatever) and therefore the treatments or cures involved such purification process through the expulsion of the poisonous substance which is supposed to restore the child as it was intended before its contamination.
This level of bile coming from the anti-vaccination side is not just scary, it is dangerous. It is dangerous not only because people in the US and other countries have swallowed the anti-vaccination rhetoric in spite of the evidence (and there, probably, not enough PR work has been done by the CDC and other institutions in charge of public policy), but also because a lot of money has gone to fund these ridiculous theories and treatments at the expense of searching for an actual cause, all with the cheering of the media and some politicians). Ultimately, the anti-vaccination crowd is hurting the children it claims it wants to save (saving the children is, of course, the rallying cry of the anti-choice movement as well, with much hypocrisy in both cases).
Personally, I’m with Elizabeth Pisani. I’m Stalinian when it comes to public health: vaccinate everybody. No choice, no opt-out option. These people put the entire population at risk by undermining herd immunity. Mass immunization is the one public health policy we know has been an immense success that has made infant mortality minimal in our countries. Uninformed parents and greedy zealots should not be allowed to threaten this major public health success.
An absolute must-read (and a pleasant one too, I read it over a couple of days, it was so gripping).