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RFK Jr

Michael John Carley

Dear all:

Twenty years ago we dealt with RFK Jr.

A fringe sideshow, he and Andrew Wakefield, and the horror-movie Geier brothers, Defeat Autism Now, Talk About Curing Autism (TACA), Cure Autism Now (CAN), and (at the time) the Autism Society of America (ASA), and a host of other orgs; all once and then denied credible study after study (in contrast with BS study after study) in wanting to establish the belief that vaccines cause autism. The 3 motives were clear.

1. Money. Legal counsels funded the work of prominent anti-vaxxers, including Wakefield, whose now-vastly discredited 1998 study (L) published in the Lancet (why are they allowed to still exist?) started this whole nonsense.

But a 2006 London Times article by Brian Deer reported that of the 10,000 suits filed thus far by parents against pharmaceutical companies, that not one had resulted in a penny for those parents. But do you think the lawyers didn’t get paid??? This was a gold mine for them! And they could sell the dream of vast payments from wealthy “Big Pharm” to parents. ASA’s Founder, Bernard Rimland, publicly drooled about “billion dollar payouts.” It might take a while given how overwhelmed the court systems would become, but everyone saw dollar signs that really castigated their capacity for critical thinking.

Pharmaceutical companies were also an easy target, given their ethically-void marketing tactics and price-gouging. Pharmaceutical folks aren’t ethical either, but…I do recall them recently saving…well, maybe humanity itself?…Remember? COVID?…

2. Since autism is primarily genetic, this counter-theory absolved many parents from having to admit the diagnosis came from them. They were incensed, not just scared, at the notion that they could have a disability. And unfortunately, and this may surprise you, more people undiagnosed and sometimes diagnosed with autism, are also actually…bigots!…against people with disabilities, even if the bigotry is aimed at themselves! And since their parents (likely the source of their self-hatred) came from the Bruno Bettelheim, “refrigerator mother” era, if not also the days of “put him in a home, and forget you ever had him,” such bigotry was rampant (my mother too, though I love her, was also a product of this era). Maybe the threat of a genetic origin would mean they weren’t allowed to refer to themselves as just “quirky” anymore. Maybe their differences came from a documentable disability? Maybe the “Why do you want to put a label on him?” generation was going to have to admit that labels can really help? When I ran GRASP from 2003-2013, I can’t tell you how many adults I saw get diagnosed, and refuse help and/or community with the words, “I’ll just deal with it.”

Trust me. They did anything but “deal with it.” They ran.

3. The failures of Motives 1 and 2 listed above only created a collective panic amongst this crowd. But rather than accept science and their debate loss, and move on with any grace, they mentally sent themselves into a cerebral place of defiance as a default, where as a rule they’d believe anything from the fringe, and nothing from established, trusted sources.

But herein in Motive #3? They succeeded. Because despite the mountains of evidence, funding, and attention to proving what every emotionally-regulated person knew, the issue never went away. During the US Congress’s first-ever hearings on autism in 2012, they convinced the dumbest of dumb politicians to go along with the money-making, scapegoating gag, and berate the CDC for three hours because the CDC wouldn’t say that vaccines cause autism. After that s-show that started the hearing, there was next a panel of six people to discuss the issue. I was one of two people with autism on the panel to testify. (And when most of us took our seats we felt ambushed—We thought the hearing was on autism, but it was not,. It was on vaccines causing autism). And unprepared that day, anti-vaxxers got their supporters on line outside the building for the seats behind the speakers, starting at 4 am. Our supporters did not, and after the bad guys had taken all the seats, our supporters were escorted into a separate chamber where they could only watch from a monitor.

This is important because when you testify before congress, you’re on camera in front of the audience. So if the folks behind you like what the speaker is saying, they can nod and make a face suggesting that they agree and that they admire the speaker. If they don’t like what the speaker is saying, they can shake their head and frown with gusto. Believe me, this shit plays well to those watching at home on TV. (Note: C-SPAN has taken down the 3 hour berating of CDC folks, but my ticked off testimony (L) is still there 🙂

Katie Wright, the daughter of Autism Speaks’ Founders, Bob and Suzanne Wright, was there too (but was not one of the six testifying), and had been a very visible face of the vaccines cause autism movement. Personally, she and I could hang despite the obvious disagreement. I’d been in their home…So on my way out, in a huff (that was a rough day in my career), I whispered in her ear “You kicked our asses.”

Finally, this movement’s vocal and highlighted leader was celebrity, Jenny McCarthy (helped by husband, actor Jim Carrey). I wrote the autism world’s most notable sex book, so I mean no disrespect to ex-Playboy bunnies; but when your movement that is supposedly based in science is led by an ex-Playboy bunny, with no science in her background whatsoever? Show me a more definitive, visible sign that you can’t think straight. Textbook farce. (L)

Fast forward to 2025, and that sideshow, piss-drinking, heroin addict, whose historical personal life is the epitome of “train wreck”…is given real power???

I’ve herein refrained from sharing the articles depicting all the horrible things he’s said about people with autism, about his lack of knowledge over even what the diagnostic criteria looks like, or how he encourages the Profound Autism crowd to spew hate at those “high-functioning” people (L) (people, no matter what, who have legitimate disabilities, diagnoses, and challenges of their own), if not also spur them on to flagrantly deny the humanity of their own children (I wonder how Autism Science Foundation’s, Allison Tepper “‘Science?’ Don’t make laugh” Singer, is feeling about her “cautious optimism” (L) toward Trump and RFK Jr. now…).

I think the disturbing stuff has been well-circulated. Instead? I’ve listed the great articles that show that we’re hitting back…rather magnificently. Maybe the autism community needed an RFK Jr? Because over the last couple of weeks, I’d argue that we’ve banded together better than we have in 13 years. I’m honestly feeling joy. Well done, peeps. Read with collective pride. And keep figuratively punching the bad guys/moral opposites in the face. This isn’t about “conversations” or “disagreements,” because that phase was over and won those 15-20 years ago. This is about truly crappy, ethically-void human beings, proudly owning the fact that they are ethically-void and crappy, and who, in a surprising result even to them, now find themselves in power.

• (BREAKING from April 24) From ABC News, “U.S. Health department denies plans for autism registry despite NIH director’s comments” (L)
• From the Guardian, “RFK’s statements prove autistic people and their families everywhere should fear Trump and his allies” (L)
• From ASAN, “Leading Autism Organizations Release Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community” (L)
• From MSNBC, “RFK Jr.’s autism registry idea raises all kinds of red flags” (L)
• From former GRASP honoree, Karen Krejcha, “A Time for Truth and Tenderness: A Response to Secretary Kennedy’s Comments on Autism” (L)
• From the NYTimes, “Kennedy Claimed Autism ‘Destroys’ Lives. Autistic People Disagree” (L)