The Autism Wars are flaring, so that means I've been in the media quite a bit lately
But will some good come out of the media frenzy?
The latest flare-up in the autism culture wars has been quite dramatic. It started with the CDC’s announcement of the latest autism prevalence figures of 1 in 31 8-year-old children. Then on April 16 health secretary Robert F. Kennedy, Jr. held a press conference to discuss the new report, the overall pattern of rising rates, and the need for answers.
The media and some advocacy groups went bonkers. Because RFK Jr. spoke about autism in not-very-endearing terms, daring to point out things like the fact that kids with autism won’t play baseball or write a poem and will need help toileting, he was accused of “hate speech” and “eugenics.” Of course I did not agree with everything he said — his comments about research directions were particularly dubious. — but his characterization of severe/profound autism was pretty benign, as Amy Lutz aptly explained.
I was also invited to enter the fray. For example I was asked to pen an FAQ in Tablet Magazine about some of RFK Jr.’s statements. I was interviewed on National Public Radio’s All Things Considered about my reactions to his remarks (an 8-minute listen). Today I’m in Disability Scoop about his lack of outreach to autism advocacy organizations regarding his plans for a new autism research initiative. And Politico included me in a piece about the search for autism’s root causes. I was also on local news, KTVU (can’t find a link).
Further, the organization I lead, National Council on Severe Autism (NCSA) as board president, had lots of attention, including this masterwork in Newsweek by our California chair, Mark Kendall.
But I fear the public is more confused than ever. Most news stories ham-handedly dismiss the new autism prevalence numbers as nothing more than an artifact of better screening, without (of course) ever grappling with the mountains of data collected over 30 years regarding all levels of autism. The public is also led, ad nauseam, to believe that autism is “genetic” and therefore cannot be “prevented,” as RFK, Jr. has suggested it might.
These tropes are utterly simplistic and divorced from the actual science of autism (e.g., autism’s strong heritability has never been proven to be genetic in origin, far from it), but that does not prevent echo-chamber journalists from regurgitating them with the warm comfort of conventional-wisdom security.
I’m in Seattle at the annual International Society for Autism Research meeting. Will report on it soon-ish. Probably starting with more than a few tweets on X. Find me here.
Interesting interviews and observations. I also live in the Bay Area and have long had an interest in the causes of autism. In my case it's more a scientific interest, as I do research in how to apply causal inference tools to problems like climate change, obesity and yes, autism.
I agree with you that people need to remain more open-minded about the cause, or causes, of autism. Saying autism is heritable does not say how it is inherited. But I tend to disagree with you about genetics. I think they are likely the causal mechanism of severe autism, at least.
But we don't know yet. Here’s hoping we will learn, and soon.
Thank you, Jill. Thank you, thank you, thank you!