Autism, RFK Jr. and Vaccines.
Oh my!
Recently RFK Jr., the current Secretary of Health and Human Services Secretary spoke of individuals with autism saying, among other things, "They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted." As one might imagine, these comments landed about as well with many individuals within the autism community as could be predicted. This ire is fueled even more by RFK Jr.’s claims that his department will release a report by September which will definitively declare the root causes of autism. Many suspect the intent will be to blame autism on vaccines and other environmental “toxins”, a belief long since discredited, at least as relates to vaccines1.
The issue of rising autism rates has been debated for at least 30 years. A recent CDC report put increases mainly to increased awareness and evaluation, a conclusion that vaccine skeptics seem disappointed with.
Trying to figure out exactly what’s going on with autism has been a decades-long mess. This, of course, invites tons of conspiracy theories about vaccines, chem trails, etc. I’ve seen posts claiming that the prevalence of intellectual disability is also increasing but, given that’s defined statistically as, roughly, the lowest 2.2% of the population or so, I’m not quite sure how that works out. So, before wading into any of this debate, I’d be prepared to take anything one reads, from any side, with significant salt.
The CDC report is almost certainly correct, as far as it goes. Better awareness, more rigorous evaluation and (frankly) loosened standards for diagnosis are all probably part of the picture. There are almost certainly some signal-detection theory issues at play as well…is it better to have a false positive (identify someone with ASD who doesn’t have it) or false negative (miss some individuals with high functioning ASD who might have benefited from intervention but now won’t get it). I suspect we’ve moved from favoring more false negatives to false positives over time, which is going to influence diagnosis rates, because psychiatric diagnoses are messy and prone to error. That much (but not all) of the increase in diagnosis is coming at the less profound levels of autism is suggestive of a loosened standard for diagnosis.
The American Psychiatric Association, in my opinion, made a grave error in collapsing a number of conditions, particularly Asperger’s Disorder into the ASD framework. RFK Jr’s description is consistent with the classical diagnosis of autism or what we might now call profound autism. But many people today embrace the autism diagnosis who are, basically, able to live fully functional, independent lives, but who might be socially awkward, blunt, shy, etc. I think both the collapsed nature of the autism diagnosis and the loosening of diagnostic standards has created much confusion.
If RFK Jr. and his Trumpian allies are inclined to go down woo tunnels regarding vaccines or power lines, or 5G or whatever, I think it’s fair to note that the disability community isn’t immune either. Freddy DeBoer has discussed this several times on his substack. His argument, as I understand it, is that autism, like other trendy mental health disorders such as bipolar disorder and multiple personality disorder and ADHD, or more recently gender dysphoria, has become a kind of social commodity. People don’t put stigmatized conditions in their twitter bio.
A mental health diagnosis can become an identity for those who feel lost, or a shield to win arguments, or a means of getting attention, or a way to develop shared community. Not all of these are necessarily bad things, but it can mean a watering down of the diagnosis such that it no longer represents only those who “truly” have the diagnosis, but a wider range of garden-variety neurotics who are anxious or shy or depressed or socially awkward and who may always be, simply as part of their personality. An official diagnosis can turn a weakness into a strength, such that we get “autism is a superpower” memes, and a lot of pseudoscientific therapy culture conversations about “masking” (which everyone does, it’s not an autism thing2), “neurodiversity”, the belief autistic individuals have telepathy, and the needs to pretend that actual autism, whether profound or Aspergers, is merely a diverse way of being rather than a real, unfortunate condition.
None of this is to say we shouldn’t offer our respect to those with autism, far from it. But we’ve always struggled with finding the line between stigmatizing a mental disorder, which is bad, and glorifying it, which also probably is bad. Encouraging overdiagnosis may have real benefits as many individuals today are likely benefiting from treatment they wouldn’t have gotten 40 years ago3, but we should at least be honest about this, lest we invite people to leap at fringe theories about electromagnetic frequencies or baby monitors causing autism.
As with many confusions about mental illness, at root is the APA’s decision to categorize mental illnesses in such a way as to appear similar to medical illnesses such as the flu or cancer. I’ve written about what a mess this has caused in my book How Madness Shaped History. The result has been an unreliable and unrealistic labeling system that has caused much confusion. Mental illnesses tend to be much more miasmic than most medical diseases4, and there probably is a significant cluster of individuals who are simply vaguely neurotic who don’t have any simple categorical disease. These individuals still deserve care and our sympathy, but encouraging the tendency to glom onto the current fad diagnosis has probably not been helpful.
Vaccine skeptics likely overestimate the influence of vaccines on autism for several reasons. These may include anecdotal overestimation…the tendency to assume that rare anecdotes (and these do appear to exist for vaccines) represent more general dangers5. Testimonials of parents who believe (but may be wrong) their kids to have been influenced by vaccines may also be powerful. People of all stripes tend to be highly persuaded by testimonials, despite that the error rate of testimonials are very high (and one can’t have it both ways, assuming testimonials of vaccine-skeptic parents are rubbish but, say, those of marginalized people with “lived experience” are beyond debate). Skepticism of science has grown, not undeserved, and the scientific community hasn’t always covered itself with glory, whether regarding covid9, Bovine Spongiform Encephalopathy, or other conditions. And the idea of environmental changes over the past half-century affecting the brain isn’t inherently kooky. After, all, one can’t simultaneously release alarming findings regarding, say, microplastics in the brain, without people worrying about what’s happening with their kids.
So, like many things, the rise in autism is probably complicated. This may include, as the CDC suggests, improvements in awareness and testing, but also social influences that tend to make certain diagnoses trendy even for those who don’t really have them. Perhaps future science will discover other chemical contaminants in our environment that influence autism. But, as far as science tells us thus far, vaccines and powerlines are unlikely culprits.
Increasingly, I view most such “consensus reports” with suspicion, as they tend to be slanted toward a priori conclusions, no matter who is making them, scholars included.
That so many conversations about mental illness inevitably land on how society is somehow at fault for not fully accomodating every human variation should be considered a tell.
The stereotypical “weird” kid of yesterday.
An idea I hope to return to at some point.
Of course, the risk of the diseases vaccines prevent are much higher than those of vaccines themselves, but that can be a tricky message to convey.