A Few Things | April 24
Three theories on why RFK Jr. wants a Registry of People with Autism.
Since every single person in America is either autistic or closely related to someone who is autistic, we need to make sure everyone is caught up on the latest autism-in-the-news. This affects everybody.
Finding the Cause of Autism by September
This bizarro and scary conversation started a week ago when RFK Jr. wrongly claimed that the recent rise in autism diagnoses was evidence of an “epidemic” caused by an “environmental toxin”. He also claimed he was going to find the the cause of autism (as if there is one sole cause) by September. Reporting from the Washington Post, shows both claims contradict the existing expertise and research on autism.
RFK Jr’s announcement is problematic in several ways. The biggest part being: autism is not an epidemic, because autism is not an infection or a disease, and it does not need to be cured. Calling it an epidemic others people who have autism and puts them in an "unclean/diseased” group. This is alarming, because every genocide has been preceded by putting people into an “unclean/diseased” group.
The particularly disturbing quote from RFK Jr. is this:
“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children.”
“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.”
It is sincerely difficult to fathom what he was trying to accomplish by saying such a horrible thing. Why is he trying to be so aggressively wrong? No, autism doesn’t destroy families. But you know what does? Gun violence. How about pay some attention to that? And yes, the vast majority of people with autism have hobbies, jobs, and pay taxes. But so what if they didn’t? Plenty of not-autistic people also don’t pay taxes. The value of a person is not based on whether or not they pay taxes.
There are literally millions of families raising happy, healthy autistic children. Did RFK Jr. really not consider they might have something to say about this?
Another problem: no, we won’t know what causes autism by September. Autism research has been prioritized by medical and scientific communities for the last several decades — guaranteeing we’ll suddenly have all the answers in just 4 short months is such a weird thing to claim. It’s even more of a nonsense claim because as Time reports, the current regime is actively cutting funds for autism research.
The only reason to name such a date would be because RFK Jr. already has some announcement he’s planning to make on that date, as if this is all just for a dramatic show.
And let’s remember, if you think it’s strange that more and more people are diagnosed with autism, it’s not actually strange at all, because we’re simply getting better and better at defining it and diagnosing it.
“There’s more Autism cases now for the same reason that we’ve discovered more planets since telescopes have gotten better.” — from @skyepolk on Threads.
The Autism Registry List
The next stage in this horrible conversation happened a couple of days ago when RFK Jr. announced he wants to create an Autism Registry List. That is exactly what it sounds like: a list of everyone in America who has been diagnosed with autism.
This is obviously alarming. The primary theory behind why this list is being created is that there is a plan to use the list to label, segregate, exclude, isolate, and eventually eliminate (read: kill) all autistic people. This theory comes with a reminder that that Nazis came for the disabled first.
Another theory is that knowing there’s a list will make the rates of autism go down. How? Because it will scare people into not pursuing a diagnosis for their child, because they don’t want their child’s name on that registry. More people intentionally avoiding a diagnosis will look like autism rates are falling.
Yet another theory suggests the list will be used to do some sort of eugenics that justifies the Conservative obsession with making certain demographics of white people have more babies. (I’ll talk more about this obsession in another newsletter.)
There are also valid questions being raised about why this list and not other lists? Why register people with autism, which doesn’t kill people, but not register people with guns, which do kill people?
Collecting Private Medical Records
The newest related headline is that this is not some sort of an opt-in list. The Guardian reports that the National Institutes of Health (NIH) is collecting private medical records from different federal and commercial databases. And they are using this information to create a new registry to track those with autism.
NPR reports the private medical records being used to create the list include medication records from pharmacies, 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.
If this sounds illegal to you, you’re not alone. Many people are wondering aloud how this would even be possible under well-established medical privacy laws. Some people point to the fact that the Trump regime has ignored many existing laws, so we can’t expect laws to stop them. But regardless, I’m sure we’ll see many legal challenges to any attempt to create this list.
Now, unless RFK Jr has opened his mouth again since I started writing this newsletter, consider yourself caught up on the autism news.
A Few Things
Here are a few things I’ve been wanting to share with you.
- From the NYTimes — Three users on Twitter who feuded with Elon Musk in December saw their reach on the social platform practically vanish overnight. This shows that Musk or others at the company have the power to punish critics and are willing to use it.
- Related, if you’ve read Careless People by Sarah Wynn-Williams (on Amazon and Bookshop.org), you’ll know Musk and his team also do the same thing on Meta platforms — manipulating the backend to make sure Mark’s own posts do unusually well, and silencing posts with messaging he doesn’t approve of. I continue to experience this myself, and I’m not the only one. The book is excellent and I highly recommend it. I listened to the audio version, read by the author.
- From Futurism — A Tesla engineering team found potentially lethal flaws in a Tesla brake design. In response, Elon Musk immediately threatened to deport foreign-born engineers on the team. Even people who suspect that Elon might be evil will be shocked by just how Nazi-level evil the man seems to be.
- In Wired — DOGE cuts pull AmeriCorps volunteers off of disaster relief jobs. The volunteer cuts, which included young people who were tasked with making forests more resilient to wildfires and helping out FEMA staff at the agency’s headquarters, come just weeks before the official start of hurricane season.
- From Slate — A brutal ruling in an anti-trust case, finds that Google gamed the system to squeeze publishers and kill the competition.
- In Mother Jones — The Real Reason El Salvador’s President Nayib Bukele Cozied Up to Trump. There's more to the deportation deal that we need to know about.
I think that’s it for now. Feel free to comment on anything I mentioned above, or whatever is on your mind.
kisses,
Gabrielle
Urgh. When you function as your own editor, it's not unusual to have typos slip through sometimes. But today, my mistakes were too much! I just made 10 different typo fixes (and maybe I missed some). Sorry about that to anyone who read the sloppy writing.
One of my children is on the autism spectrum. I took him to see our GP in the 1990s because someone suggested he might have ADHD (he doesn’t). The GP told me that my son would “grow out of it” (“it” being my son’s behaviours of concern). My son did not ‘grow out of’ any of his difficulties, but he did learn to manage his frustrations in more socially-acceptable ways. As for being able to care for himself, my son was toilet-trained at an earlier age than his siblings; spoke fluently when he was only a toddler; was adept at looking after himself before he started pre-school; kept his room tidier than his siblings kept their rooms and was more conscientious about maintaining good hygiene than his siblings. Yes, he was different to most of his peers, but he was also hard-working, responsible, reliable, conscientious, intelligent, curious about the world, well-read, honest and a good person, with what I termed as ‘idiosyncratic’ behaviours. He was not diagnosed as being on the autism spectrum until he was aged 20, and that was because autism was not widely understood or recognised when he was a little boy. While my son was definitely difficult to raise when he was young, he has grown into a very capable, highly intelligent, well-educated man who is very well-respected by his peers. He absolutely lives independently and definitely works and ‘pays taxes’. He contributes to society in many ways because he is a born-leader and has many areas of interest that he devotes his time to. I value his opinions and insights. He sees the world differently to me and I appreciate his viewpoints because they help me to see things in a different light to what I otherwise would. He helps me to be a better, more well-rounded person.
While my son is ‘different’ in the way he thinks, ‘different’ does not mean ‘bad’. For society to function well and to progress, we need people who can think ‘outside the box’. And autism is a spectrum, meaning people diagnosed with ‘autism’ range from highly intelligent, capable individuals through to individuals who need assistance with all activities of daily living. Anyone who paints all individuals with autism as having the same characteristics is ignorant.
Ignorant people should not be in leadership positions, lest they spread their ignorance. Leaders need to educate themselves before they spout nonsense and spread lies about matters of which they have an incomplete and inaccurate understanding.
We are not American and do not live in America, but from the information I have heard and read, America lacks sensible, well-educated leaders at present, and ignorance is not preventing America’s leaders from spreading inaccurate nonsense and lies. It would be embarrassing if it was not so damaging to individuals and society as a whole. The idea of establishing an autism register is abhorrent. For what purpose? How is this in the slightest bit helpful? I cannot see this as anything other than a means to ostracise and discriminate against a particular group of people. A person’s medical diagnoses are no one else’s business unless such diagnoses may affect others.