The HHS secretary, RFK Jr., doesn't know what he's talking about when it comes to, well, probably anything, which is par for the course for Trump's cabinet. But he's really talking out of his ass when it comes to autism spectrum disorder (ASD). That's personal, for obvious reasons. Simon was diagnosed at 3, I was diagnosed in midlife. It has not "destroyed families" or any other such nonsense. Has it made life more challenging? In some respects, yes, but this is less about the condition than it is the world at large.
So here are some truths to share.
- Vaccines don't cause autism. Same with "toxins," which is a meaningless word used by people who don't understand middle school science. They are willingly ignorant. This has been researched at scale for years.
- Autism is not the character in Rain Man. It can be, but that's a caricature and stereotype. Because...
- The DSM refers to autism as a "spectrum disorder," which is a way of saying that the scope and effects vary wildly from one person to the next. It says that "impairment" is a requirement of diagnosis, but it's more of a "neuro-type."
- If you know someone with autism, you know one person with autism. While there are some commonalities between any two people, the next two may be completely different.
- Autism diagnoses are increasing because we're looking for it. No one was looking for it when I was a kid, thus the midlife diagnosis. It's particularly encouraging that minorities and the poor are getting more access to expertise.
- And because it's so broadly defined and underdiagnosed, the statistics around it are borderline useless. For example, government data just a few years ago suggests that only 5% of autistic adults lived independently. This is of course not true... most are just not diagnosed.
- Autism rarely is a thing by itself. It is often found along side of ADHD, dyslexia, dysgraphia, etc.
- While difficulty with social interaction is common, I would argue that often the problem isn't autistic wiring, it's the arbitrary social contracts we have to navigate.
- ASD is described as a developmental disorder, and this is why some people struggle to communicate or reach certain milestones. This does not mean that they are unintelligent, it means that their functional wiring is different.
- I believe that while a "disorder" can impair a person's ability to function in society, again, like the social contracts, sometimes it's just that the world's default mode doesn't accommodate the differences. Nowhere is this more true than in school.
- To expand on that, I don't like to consider it a disorder for me, because despite the challenges, it stands to reason that it has been an asset in other ways.
- Online communities of autistic people appear to me to be incredibly dysfunctional, which kinda makes sense given the differences. There are a varying opinions about whether or not this is something we should consider a part of our identity. And don't even get started on the nomenclature itself.
- Environmental conditions can be difficult for some, but not everyone. Sound, light, smells, food, surface textures... these can all cause discomfort.
- People will talk a lot about coping mechanisms, which are skills that make it possible to exist in a world not optimized for us. It doesn't mean that the person is any more comfortable in the situation.
- Do not ever use the terms "high functioning." That is not a diagnosis. It is not in the DSM. It's a term invented mostly by affluent white people who want to trivialize the diagnoses of their children, or worse, throw shade at the kids who really struggle. I equate this to saying something racist. Close second is using the term "normal."
I'm sure there are other things, and I don't want to pretend that I'm a spokesperson for ASD. Yes, there are people like those you see in these (borderline exploitive) reality TV shows that can't be very independent. That's why it's weird to lump everyone together in one category. I suspect that if you screened the entire population, the diagnosis rate would be two or three times higher.
With that said, I've kind of had a mental list of things that, in retrospect, make it more obvious to me that I would have been diagnosed as a child if anyone was looking for it.
- I apparently would not walk in sand as a very young child, something my mother seemed to hold against me well into adulthood. That's a texture thing. Simon struggled with it at first, too. Now we both enjoy getting beat up by the ocean waves.
- I am to this day a very picky eater. It's part of the reason that I don't force the issue with Simon, who frankly is more willing to eat certain vegetables than I am. In adulthood, I have been able to lean into some kinds of Asian fusion and Indian food, fortunately. I love curry.
- I still remember the most epic meltdown ever that I had in fifth grade. The details are unimportant, and I remember a lot of things when I was young, but the feelings around that were so strong that they stuck with me.
- I always struggled socially in school, and it only got a little better in college. I also tended to gravitate toward adults, and I'm grateful for those who indulged my social efforts. I'm convinced that they changed the outcome of my life. It's why I'm hostile toward adults who won't give Simon the time of day.
- The cost of conforming to social norms is total exhaustion. Any time I've had to interview in person, the eye contact just kills me. And I think about the time that I went to every radio station in Cleveland, dropping off audition tapes looking for a job. On one hand, my lack of filter let me do that, but the actual interactions with receptionists and a few actual program directors was hard. I vividly remember sleeping for 12 hours that night.
- Indeed, I've talked about the speed of my mind, the thought spirals, and how it goes everywhere, all of the time. How do you escape your own mind?
- I need tactile feedback more than I realized. I used to do more harmful things like pick my toenails until they bled, made worse with #floridalife and no shoes or socks, but these days I find solace in the texture on my laptop, or pushing off the corner of my phone case with my thumb.
- My aversion to clubs and bars in my 20's is clearly my aversion to crowds. It's why I'm hesitant to go to shows and why I don't want to be at theme parks when they're extra crowded.
- I am very sensory averse in very specific ways. I remember feeling nauseous as a kid at the smell of bacon (another thing often dismissed by parents), and that's still a thing. Sometimes noisy environments for me feel like the audio equivalent of being in a room with strobe lights that never stop. In January I had to leave a restaurant.
- I'm insanely impatient with anything illogical. And let's face it, that's much of the world right now. It affects my relationship with my child, who does not optimize things the way that I do. It frustrates me at work with meetings and ceremony that have no demonstrable value. And of course, politics.
- I do find safety in routine, but struggle to find routine in things that would be beneficial, like exercise.
- At the same time, I also crave new experiences. Admittedly, this wasn't previously a thing. Moving to Seattle forced that function, now it's a constant. I need new music all of the time. I want to see more of the world. I got a couple of tattoos, and I'm open to more. I imagine this is the most anti-autistic thing about me, but point it out because it reinforces how difficult it is to stereotype.
- People have often said that I'm "direct" or "not afraid to offer an opinion," and I fully recognize that this is the lack of filter, or inability to catch certain social cues. It has certainly gotten me into trouble, but I'm OK with that.
- I have a lot of, uh, let's call them "quirks," when it comes to domestic habits. I'm lucky that Diana just kind of rolls with them, or perhaps contains rage over them.
There are a bunch of other things, but I'm not sure if I can attribute them to ASD or ADHD, or neither. My point is mostly that I'm reasonably self-aware, and that these are things that I'm sure some people, but not all, can relate to. It is materially who I am.
So when RFK says stupid shit like autism ruins families, and that autistic people will never pay taxes, have a job or go on a date, fuck RFK. Fuck him and his ignorant MAGA cult followers.