The novelist and screenwriter William Goldman famously wrote that until a movie opens, "nobody knows anything" about how well it will do at the box office.
This quotation came to mind as I read two recent stories about possible causes of autism in the New York Times. The first, published on the front page Aug. 23, reported on a study that suggested the older a man is when he becomes a father, the more likely his child is to have autism.
Three days later, on the front page of its Sunday Review section, the Times published an article by Moises Velasquez-Manoff that declared autism is an inflammatory disease caused by a faulty immune system. Theorizing that the lack of parasites in the developed world has thrown the human immune system out of whack, Velasquez-Manoff suggests that autism has become more common because the parasites that used to limit inflammation no longer regulate our immune systems. He approvingly mentions a new trial in which autistic adults are being treated with trichuris suis, a type of worm meant to help put the immune system back in balance.
My point in bringing up Goldman's "nobody knows anything" quote is not necessarily to criticize the science in these stories (although, since I've mentioned it, you can find a useful summary of the many problems with the immune system theory here). Rather, I'm struck by the fact that the paper of record gave front page coverage to one possible cause of autism and then days later featured a completely different possible cause in perhaps its most-read Sunday section. Yes, both articles offer caveats that their theories can't account for all autism cases, but that caution disappears under the approving quotations from scientists in the paternal age article and Velasquez-Manoff's confident explanation of his theory.
A casual reader could be forgiven for wondering if science completely changed its mind in the three days between articles. Or, more likely, that reader might conclude that in fact, we don't know anything definitive about the real cause or causes of autism. That is, "nobody knows anything."
A scientist might respond, "So what?" After all, scientific progress might be viewed as a slow journey from "nobody knows anything" to greater and greater knowledge. Along the way, it's necessary to test and debate all sorts of different theories, and it's to be expected that some of those theories won't pan out. Eventually some of them do, and science inches forward.
All of which is true, as far as it goes. But scientific research does not occur in a vacuum. Research priorities are driven by cultural priorities. And within both Times articles are disturbing clues about what our culture's priorities are.
The paternal age story, for example, quotes Alexey S. Kondrashov of the University of Michigan, who wrote that if the study results are confirmed, "then collecting the sperm of young adult men and cold-storing it for later use could be a wise individual decision."
Meanwhile, over in the immune system article, Velasquez-Manoff writes, "Fix the maternal dysregulation [of the immune system], and you've most likely prevented autism."
And there you have it: Despite the many differences between these two theories, the research behind both of them is motivated by a goal of preventing autism. We shouldn't be surprised. Autism is still largely thought of as a tragedy in our culture. There are all sorts of scientifically-untested treatments for autism, and some parents eagerly try each new one (no matter how appalling) as they search desperately for a cure.
Meanwhile, parents are often wracked by guilt, wondering what they did (or didn't) do that caused their child's autism. Indeed, one blogger responded to the paternal age story with a post that celebrated the fact that fathers of autistic children finally have something to feel guilty about.
In such an environment, it's no wonder that our research into autism is designed to prevent it.
I stand with a group of autistic adults and their allies who believe that the best way to support autistic people is to accept them, encourage their strengths, and work with them to find ways to mitigate their disabilities. And I don't see how I can support acceptance and also support research that seeks prevention.
I'm not naïve enough to believe that science would ever call off its search for the causes of autism. And I don't even want that search to be called off. There is value in increasing our scientific knowledge for its own sake, and discovering the causes of autism could offer some benefits to autistic people who are already here.
But good science can be used for bad ends. Prevention of autism can't be our only motive. The message that both Times articles send to readers is that autism should be feared, fought against, and eradicated. That message can do nothing to improve the lives of the hundreds of thousands of autistic people who are with us now.
Science will keep moving forward, slowly increasing our knowledge of autism. But whatever we ultimately discover about the causes of autism, the one thing everyone should know for sure is this: The goal of science should be to help autistic people, not prevent them.
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