RFK’s Autism Registry: What Could Go Wrong?

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Transcript:
Well, it’s a day that ends in “Y” so I guess it’s time to talk about RFK, Jr. again! We’ve already gone over his history of being an anti-vaccine psycho, and if you know anything about the current state of the anti-vaccine movement, you know that it’s inexorably tied up with autism nonsense. For years now, people have claimed without evidence that vaccines cause autism. Every major study done over the past several decades has shown conclusively that that’s not true. In the early days, conspiracy theorists blamed the common vaccine ingredient thimeresol, and even though there was, again, no evidence that it caused autism, vaccine manufacturers removed it from vaccines and there was no change in the rate of autism. Now the conspiracy theorists have other ideas for why vaccines are bad, but many of them still blame autism, with an unknown mechanism.
So of course, because RFK literally has a dead parasitic worm rotting in his brain, he announced in March that he was going to waste a bunch of tax dollars studying the nonexistent “link” between vaccines and autism. And then he one-upped himself by holding a press conference last week where he announced that “autism destroys families” and is an “individual tragedy as well.” He said that many autistic children many autistic children were “fully functional” until they “regressed … into autism when they were 2 years old.” And then the piece de resistance, he said, “And these are kids who will 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.”
Serious question: can RFK use the toilet unassisted? I’m honestly not sure, but regardless, I don’t think his inability to do so would be an “individual tragedy” for him or that he “destroyed his family.” I’d say that all the stupid shit he’s done in the past several years is a tragedy that destroyed his family, and several of his family members have agreed with me, but it’s got fuck all to do with poetry, I assure you.
Anyway, he also said “Most cases (of autism) now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features.”
As PBS fact-checked, there ARE many autistic people who are profoundly affected by it, but the largest number they could find was a 2023 report that cited 26.7% of 8-year olds whose autism was considered “profound,” meaning they were nonverbal, minimally verbal, OR had an I.Q. below 50. RFK made it sound like they have all of those things but that is not correct.
For instance, the number of autistic kids who need help bathing and dressing was found in another study to only be about 7%, and another study found that about 10% of autistic kids had incontinence.
Some of the numbers, like nearly 27% of kids being considered “profoundly autistic,” may still sound high, but that’s the highest figure out there and it’s a tough figure to pinpoint, because we don’t know how many people out there are undiagnosed, “profound” as a category is new and the definition is still in flux and not universally accepted, and that figure involved children, who could potentially grow up to improve their verbal skills.
We absolutely should mock RFK for his fearmongering, because his words definitely implied that severe, life-altering autism is way more common than it is. Autism is a spectrum, and there are millions of Americans living full, rich lives despite–or often because–they’re on that spectrum.
At the same time, I don’t want to dismiss the experience of those people who do have profoundly autistic children, who will likely need a lifetime of 24/7 care. Instead of talking about these families as being destroyed by tragedy, though, we should be giving them unlimited support: healthcare, housing, assistance, whatever they need so that everyone can live a rich and rewarding life EVEN IF they never pay taxes. Because paying taxes isn’t how we assign worth to a human life, which, honestly, it quite lucky for RFK and his billionaire pals.
But wait, there’s more! Because as I was putting together this video, RFK upped the ante by announcing that as part of his bullshit, pointless effort to study the nonexistent link between vaccines and autism, he will be compiling a massive database of medical information for millions of Americans, which will include “Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers.”
And what will they do with that data? Well, create an “autism registry,” of course, in which they can track and monitor autistic Americans in “real time!”
Well that sounds fine, and definitely not like something literal Nazis did during the Holocaust, when about 250,000 people deemed to have mental or physical disabilities were singled out and executed because their perceived disabilities were considered a tragedy that was destroying good German families and society as a whole.
It’s not a dog whistle so much as it is a train whistle, and so it’s no surprise that, as Rolling Stone reported, the parents of autistic children flooded the phone lines of their medical offices asking to have records destroyed while others canceled diagnostic exams, leaving those kids without access to the care they need to thrive.
That article is quite good and I recommend it, because it does include the important addition that registries ARE rather common and can be very important for research purposes and for improving therapies for people, and in a perfect world the data would be divorced from actual identities and treated very carefully. But we do not live in a perfect world. We don’t even live in a kind of shitty world. We live in a world where our government officials are planning and implementing the mass murder of civilians in a foreign country using a group chat on the Signal app, and they accidentally added a journalist to the group chat. These are not serious people who care about your privacy. These are grifters and Nazis who care about money and white supremacy. And they aren’t even planning to use this registry to conduct useful research on autism: they already told us that they’re planning to use it to study a stupid conspiracy theory that has been debunked over and over and over again. Might they use it for actual beneficial research? Sure, maybe! But they also might hand it over to Elon Musk so he can fine tune Neuralink’s “AI-powered chip” that will “solve” autism.
It’s been awhile since I read it but I’m pretty sure that’s how 1984 ends, right? With Winston getting a chip implanted into his brain to cure his autism so he realizes he actually loves the Party? That was a happy ending, right?
Anyway, I’m not saying that you should panic, if you are an autistic person or you have an autistic child. But it might be a good idea to talk to your doctor about what data they have on you and what you might be able to lock down. Also delete any apps on your phone that might be sharing data you don’t want shared. Normally that’s advice we give about menstruation to protect people who get pregnant but I don’t know, it might be worth thinking about for other conditions that are under the microscope.
Okay, that’s it for this month’s RFK update. Oh, and by the way: happy Autistic Acceptance Month, everyone.