Further considerations on RFK2's Autism misinformation...
A step by step deconstruction of dangerous ignorance...
Recently — that’d be this morning — I had a quick interaction with someone here on Substack regarding an old reply I had made in good faith to a post that person made about RFK2’s (I will refrain from my usual snarky movie references in this piece. I’m treating it seriously) speech about individuals with Autism.
Having seen the fervor stirred over RFK’s statement, I wondered if perhaps people were reacting to only a snippet or just clipped quotes here and there. So, I had wanted to reserve any judgment until I knew whether that was the full extent of what the man said. This was the crux of my statement to this person’s post. Nothing challenging. In fact, it was a request for aide. You see, I couldn’t find anything other than articles detailing the rage. I couldn’t find videos of the whole speech. I couldn’t find transcripts of the whole speech. And, since this person was defending what he said, I wondered if maybe they had information I wasn’t able to find. I wanted the whole story.
Why? Well, because sometimes people do get into a big way of talking and get taken out of context. And, in today’s environment of rage-based algorithm monetization, that drives clicks. It also drives division. I’m trying to do better. So, I asked Mark Duncan Stewart if perhaps he had a more robust quote because, if the quote I was seeing was the full extent of what RFK2 had said, then it was dangerously misinformed.
Today, Mr. Stuart replied to me with this:
Yep. That’s the quote I was finding. Well, I didn’t handle it properly at first. I’ve been an advocate for teachable moments for as long as I can remember and I threw one down because I’ve had a crap week. It got the best of me and my angry side was in full “Screw it, what’s the point of anything” mode this morning. So, I didn’t act according to my values. I did apologize though.
And, I do mean that apology. I do wholeheartedly apologize to Mr. Stuart. He took the time to reply to me and I sniped at him. Not cool. So, Mr. Stuart, if you’re reading this: I apologize again. You didn’t deserve that and I acted immaturely.
That said, I still stand by my earlier statement that, if this is the full extent of what RFK put forth, it is full of dangerous misinformation. And, here’s why:
Autism destroys families. Does it? Maybe. But, to issue it as a proclamation the way he did makes it sound like a diagnosis of Autism automatically destroys the family unit. Nothing could be further from the truth. We have to remember, and so should Mr. Kennedy, that he is not only speaking to a room full of people who will be able to parse what he means and what he does not. His words will also go directly to people who have no idea what Autism is, the criteria for diagnosis, the statistics associated with its prevalence, and the functionality of people with the diagnosis. Aside from his declaration, there aren’t really any studies to back that up. Families experience stigma associated with the diagnosis. They experience isolation from friends and family and other social difficulties at rates of upwards of 40%, according to the Kennedy Krieger Institute, and children with Autism experience an ungodly amount of teasing and bullying. But, nothing suggests that autism destroys the family unit of people who are diagnosed with the condition.
It destroys our greatest resource. No it doesn’t. People with Autism may require more time, love, and understanding from us as a society, but it doesn’t mean they’re “destroyed.” This is a part of that stigma mentioned by the Kennedy Krieger Institute. But, for a moment, let’s steel man this part of his statement and suppose Mr. Kennedy is referring to individual in the more profound ends of the Autism spectrum. In these levels, individuals will need lifelong support because they struggle to perform activities of daily living and may not be able to perform them at all, unaided. However, the phrase he used belies a mindset: it is the same mindset we find present in the ages old worthy poor vs unworthy poor argument. Destroyed things have no inherent worth. They’re discarded. They’re useless, so we get rid of them and start over. They’ll never pay taxes. They’ll never hold a job. They’ll never write a poem. They’ll never… They’ll never… Notice the pattern? Mr. Kennedy has adopted a deterministic mindset here and, as such, has assumed that people who may be in the more severe ends of the ASD spectrum are automatically of no value to society. We’re within spitting distance of eugenics here.
These are children who should not be suffering like this. No one likes to watch children suffer. Well, some people probably do, but those people are evil. However, this is a dangerously fallacious statement. There is no cure for Autism. Why? Because we don’t know what causes it. Even adopting that frame of mind is dangerous because we begin to presuppose that there is something wrong with people who have Autism. There isn’t something wrong with those people. There is just something different about them. Again, let’s steel man the position and say he is referring to individuals in the more severe end of the spectrum. Should and shouldn’t are irrational. And, who gets to say they are suffering? Using this language automatically implies that people in the more severe ends of the spectrum are living a life of untold misery and suffering. How do we know? We don’t live inside their bodies or heads. Because it may not look like the idealized way of functioning and living we might have had for someone; does not mean they are “suffering.” This statement is dangerous because it forgets to do the one basic thing anyone who cares for someone with Autism does on a daily basis: meet them where they are. It would be like someone saying Mr. Kennedy is suffering because he can’t speak plainly and then writing him off.
These are kids who many of them were fully functional and regressed because of some environmental exposure into autism when they were two years old. This statement is a complete mischaracterization of what Regressive Autism is, factors associated with it, and how or when it might occur. Is it possible he’s mixing hyperbole with ignorance? Sure. Either way, it’s a dangerous statement to present to a layman. Yes, sometimes children with ASD do regress after having gained speech and other skills (some figures report upwards of 40%. But, with support and effective therapeutic intervention, many regain those skills). And, yes, “environmental factors” can impact regression. And, yes, it does tend to happen around two years of age. What’s dangerous here is the way it’s presented. The way Mr. Kennedy presents it is as if an average child will just one day, out of the blue, become autistic at 2 years old because of some kind of environmental autistic exposure. That’s not how that works AT ALL.
Children with regressive forms of Autism are already living with Autism. It’s not an acute onset, where one day they’re fine and the next they just don’t speak and become “autistic.” The environmental factors he mentions can be everything from events in utero to extreme stress, to toxin exposures after birth. And, we still don’t know any of that for certain to any predictable extent. It’s still a work in progress. We know it can happen. We know it does happen. We just don’t know how or for what reason(s) specifically — yet. And, that’s why this statement is so dangerous; it lacks all the medical nuance required to give it full context. It’s just a dehumanizing categorization based on one person’s judgment of the worth of individuals they see as suffering from a socially unacceptable disease.
So, a room full of experts would be able to parse this pretty easily. But, an internet full of laymen who have no desire to educate themselves any further than what he says will take it at face value and develop a very dangerous opinion of Autism Spectrum Disorder.
These are kids who will never…(all of that jazz).. Again, let’s steel man the argument and assume he means the most profound ends of the spectrum. First, this is deterministic as hell and treats those people as worthless or as having little or no value whatsoever. That aside: He never took the time to clarify what he was talking about. He never mentions which end of the spectrum he is actually talking about. To a room full of experts, clinicians, and people familiar with ASD we may know what he’s driving at — even if we disagree very vehemently with his complete mischaracterization of the the worth of those human beings — the more involved level of needs. However, to people who are just on the MAHA Train and have the mindset that he’s the expert and they need look no further, he just gave them the impression that this is ALL people with Autism. Mr. Kennedy just implied that anyone with Autism doesn’t think or feel or functioning the way a “normal” person does. Nothing could be further from the truth. People with ASD may have certain atypical behaviors and cognitive processing patterns, but they think and feel every single thing a neurotypical human does: anger, love, fear, lust, excitement, anxiety, interest … the whole nine yards. They date, marry, have sex, pay bills, drive cars, build empires, and tons of other things.
Even people in the more severe ends of the spectrum still feel and think. Just because Mr. Kennedy and others who share his observation may not see them up and dating, swimming, kissing, giving speeches to crowds, making money, mowing lawns, or cooking gourmet meals — that does not mean that they never will do anything or that they don’t have anything to offer society or their families. The danger here is that Mr. Kennedy is operating from the mindset of “What value are you to our society?”
To evaluate a human being based on what they have to offer society in your opinion and then, to offer that judgment of their worth to the world from a position of authority, having provided so little context, with so little understanding of the subject on which you are speaking is absolutely two things: dangerous and misinformed. And, at a time when a growing chunk of our population honestly — albeit mistakenly — believes vaccines cause Autism, this could represent a level of risk to society that could be catastrophic.
You see, Mr. Stuart, where you saw a simple statement and inferred harmless omission I saw a statement from a recognized health official, who is the head of a major National Agency. I saw a man who now has a great responsibility to use care in exercising the medical speech he uses, regarding diagnoses, treatments, and approaches to healthcare. Mr. Kennedy didn’t do that and DOESN’T do that. He speaks carelessly. He misuses the weight of his office and authority to push his own personal beliefs as though they were facts. What’s worse, they will be accepted as facts by many people in this country. His statement, while not 100% wrong, was also 100% dangerous because of its lack of clinical specificity, lack of fundamental knowledge, and omission of key facts. He just added to the stigma people with Autism have worked so hard to overcome.
And, that’s why his statement is dangerous misinformation.