On the last day of the Science Blogs Book Club discussion about Dr. Paul A. Offit’s recently published Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, I’ll start by quoting the last paragraph of the book:
The science is largely complete. Ten epidemiological studies have shown MMR vaccine doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001, the number of children with autism continues to rise. Now it’s up to certain parent advocacy groups, through their public relations firms, lawyers, and celebrity spokespersons, to convince the public that all of these studies are wrong—and to convince them that the doctors who proffer their vast array of alternative medicines are the only ones who really care. (p. 247)
Now that’s a laying down of the gauntlet. Those “certain parent advocacy groups” and their accompanying band of PR firms, lawyers, celebrity spokespersons, and the doctors who “proffer their vast array of alternative medicines” have their work cut out for them, if they mean to thoughtfully contest the claims of the numerous studies Dr. Offit cites.
But the problem is—-based on how the antivaccinationists have responded to the evidence so far—-they’re not going to respond to the science with science. Instead, expect full-page ads (like this one) in which there’s talk of not being “anti-vaccine” but “pro-vaccine-safety.” Expect a lot more moving of the goalposts as autism gets rebranded: So the link between thimerosal in vaccines and autism does not seem “so strong”—then it must be something else, like aluminum. In other words, don’t expect an actual discussion of the studies Dr. Offit cites but succinct slogans with just enough punch (“autism is treatable,” “green our vaccines”), criticisms of “conflicts of interest,” cries of the limitations of the data.
Science is not, perhaps, of any real concern to the antivaccinationists. More and more, it seems that antivaccination belief is something akin to a religious conviction or at least to some kind of faith that is not looking to science or scientific studies for validation. The evidence will mount, children will continue to be diagnosed with autism spectrum disorders at a rate much much higher than in the past, but someone will still be pointing to a shot or something in the environment as a “possible cause” of autism—-because what’s driving those “certain parent advocacy groups” is something more like……faith? belief? a sense that taking a stand on vaccines and autism is the rallying point for (as a commenter wrote) a sense of “community and identity.” Because, knowing (or thinking that you know) that some particular thing was behind your child becoming autistic, is often seen as the first step in knowing how to help a child.
Or that’s what is thought—-and that’s why parents have tried a dizzying array of treatments, and especially alternative treatments, to “treat” their child’s autism.
Pages 119-124 of Autism’s False Prophets provide a quite comprehensive list of the numerous biomedical and alternative treatments used to “cure” autism:
steroids, cod liver oil, cranial manipulation, chelation therapy, sonar depuration, hyperbaric oxygen therapy, the “body ecology diet,” camel’s milk, “‘foor-soaking machines,’” laser therapy, bacteria-containing nasal sprays, pig whipworm eggs, magnetic clay baths, stem-cell transplantation, the gluten-free casein-free diet, secretin, nystatin, amino acids, fatty acids, di- and trimethylglycine, taurine, melatonin, creatine, digestive enzymes, glutathione, carnitine, activated charcoal, colostrum, Lupron, megavitamins, infrared saunas
That’s not a complete list and it will, no doubt, grow. One reason why parents keep trying to find that elusive “magic pill” is because of something Dr. Offit mentions in the very last sentence of his book: Those who offer that “vast array” of treatments, supplements, potential “solutions” seems to be the “only ones who really care.” Next to the gentle comfort of a mauve-hued waiting room with couches that look like something you’d like in your living room (vs. standard issue office furniture) and photos of nature and smiling children glowing with health in shiny frames—and all in a finely painted Victorian house located not off a major highway, but on a pleasant street in an artsy town—a neurologist who talks about psychiatric medication for a 7-year-old in a generic issue HMO exam room can seems the epitome of someone who really doesn’t and can’t care, who just sees one’s child as a diagnosis, a label, and some really difficult behaviors. And parents who have long days and longer nights with a child who struggles to go to sleep, struggles to talk, struggles to stop sniffing the food at the grocery store, struggles to take his turn in a board game: A little comfort can go a long way.
As a parent who’s had those struggles and who’s sat in plenty of waiting rooms, and who also found herself sitting on (yes, it really was) a mauve couch at a “Center” with a very pretty and quite large crystal sort of thing on the table and a closet full of kits to send samples of various body fluids to the likes of the Great Plains Laboratory—and as a parent who, while sitting on the mauve couch, felt irked that the practitioner (a DAN!) seemed to think there was no need to actually see Charlie, and was glad to rely on my descriptions—Autism’s False Prophets has become an essential reference book in understanding how I ended up sitting on that couch, and why after a few times back, I said good-bye. The couch and the caring can seem enough and I think, in order to successfully counter antivaccination and its false prophets, we need to understand that those are what we’re up against. Orac wrote about the “empathy gambit“: There’s a need, a crying need, among parents to feel and know that they are being listened to, that they’re not crazy, and that they can do something to help a child who seems to be beyond help.
A generation ago it was commonly thought that bad parenting—”refrigerator mothers”—caused their children to become autistic. Mention this theory today and people will shake their heads over how anyone could have believed such a notion. Will the vaccine-autism issue be one day seen as yet another theory about autism for the history books; will we look back and wonder about how misguided we were?
It makes me wonder: What might be a fitting sequel to Autism’s False Prophets?
It’s a story that’s not yet over. The false prophets have spoken and now it’s time to listen to the truth.