RFK Jr.’s recent speech about autism has sparked a lot of deserved anger. But like many things in life, it’s even more complicated than you think it is, and this is a good opportunity to explore some of the issues surrounding this diagnosis.

While the definition has shifted over the years (like most medical diagnoses) autism is currently considered a fairly broad spectrum sharing some underlying neurological features. At the most “severe” end of the spectrum (and to show you how fraught this issue is, even the use of the term “severe” is controversial) people with autism (or autism spectrum disorder, ASD) can be non-verbal or minimally verbal, have an IQ <50, and require full support to meet their basic daily needs. At the other end of the spectrum are extremely high-functioning individuals who are simply considered to be not “neurotypical” because they have a different set of strengths and challenges than more neurotypical people. One of the primary challenges is to talk about the full spectrum of ASD under one label. The one thing it is safe to say is that RFK Jr. completely failed this challenge.

What our Health and Human Services Secretary said was that normal children:

“regressed … into autism when they were 2 years old. 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.”

This is classic RFK Jr. – he uses scientific data like the proverbial drunk uses a lamppost, for support rather than illumination. Others have correctly pointed out that he begins with his narrative and works backward (like a lawyer, because that is what he is).  That narrative is solidly in the sweet-spot of the anti-vaccine narrative on autism, which David Gorski spells out in great detail here. RFK said:

“So I would urge everyone to consider the likelihood that autism, whether you call it an epidemic, a tsunami, or a surge of autism, is a real thing that we don’t understand, and it must be triggered or caused by environmental or risk factors. “

In RFK’s world, autism is a horrible disease that destroys children and families and is surging in such a way that there must be an “environmental” cause (wink, wink – we know he means vaccines). But of course RFK gets the facts predictable wrong, or at least exaggerated and distorted precisely to suit his narrative. It’s a great example of how to support a desired narrative by cherry picking and then misrepresenting facts. To use another metaphor, it’s like making one of those mosaic pictures out of other pictures. He may be choosing published facts but he arranges them into a false and illusory picture. RFK cited a recent study that showed that about 25% of children with autism were in the “profound” category. (That is another term recently suggested to refer to autistic children who are minimally verbal or have an IQ < 50. This is similar to “level 3” autism or “severe” autism, but with slightly different operational cutoffs.)

First, there are a range of estimates as to what percentage of autistic people would fit into the profound category, and he is choosing the high end. Also most of the people in that category don’t have the limitations that RFK listed. A 2024 study, for example, which relied upon surveys of parents of children with autism found that only 10% fell into the “severe” category. Even within this category, only 67% had difficulty with dressing and bathing, or about 7% of children with autism. I am not trying to minimize the impact of the challenges and limitations of those at the severe end of the spectrum, just putting the data into context. What RFK was doing, which is what antivaxxers have been doing for decades, is trying to scare parents with a very specific narrative – perfect young children will get vaccinated and then regress into horrible autism that will destroy their lives and your families.

What is regression? It is a loss of previous milestones or abilities. The exact rate in severe autism is unclear, ranging from 20-40%, but the 20% figure is considered more reliable. In any case, RFK misrepresents this as well. Regression does not mean that a 2 year old child without autism develops severe autism – it means that a child with autism loses some function. Much of the time regression refers to social skills, with autistic children finding it more difficult to engage socially as they age (which can simply be adaptive and not require neurological regression). Language regression occurs but is less common.  Again we see that he uses a piece of the picture, exaggerates it, and then uses it to imply a reality that does not exist.

He then does it again with the “surge” of autism. Yes, autism diagnoses have been increasing for decades. At first (during the 1990s) you could make a correlation between increasing vaccines in the childhood schedule and increasing autism diagnostic rates. This was always just a spurious correlation (my favorite example is that organic food sales track better with autism diagnoses than does vaccination). But after about 2000, when thimerosal was removed from the childhood vaccine schedule in the US, autism rates continued to increase. The correlation completely broke down. Antivaxxers desperately tried to explain away this breakdown in the correlation, with increasingly ridiculous special pleading, and now it seems they just ignore this fact.

RFK is just ignoring this fact, and just making the more general observation that autism rates are increasing, which they are. But this increase does not fit his scary narrative for at least two reasons. First, as I and others have pointed out, there is copious evidence in the literature that much of this apparent increase is due to changing diagnostic patterns. At the severe end of the spectrum there is some diagnostic substitution – in past decades children who are now diagnosed with autism would have been diagnosed with mental retardation or something else less specific or just different. At the high functioning end of the spectrum children with autism likely would not have been diagnosed with anything at all. I have explored this issue at length before – the more carefully you look (applying the same diagnostic criteria across different age cohorts), the less autism is increasing. It is also true that autism is dominantly a genetic disorder, and that there are very early signs of autism, even in  six month olds, and perhaps even at the fetal stage.

But also the dramatic increase in autism diagnoses is mostly at the mild end of the spectrum. There is only a small increase of profound autism. So again, RFK’s narrative breaks down when you look at the actual scientific facts. He says normal children regress into profound autism and this is surging. But that is wrong. He is exploiting the fact that we use the same term, autism, to refer to profound autism and what was previously called “aspergers syndrome” but is now just considered part of ASD.

All of this is sufficient evidence to conclude that RFK is incompetent to serve as HHS secretary, he does not understand medical science and rather makes a lawyer’s case for extreme conspiracy theories designed to scare the public into making bad medical choices.

But there is another side to this story (that has nothing to do with RFK). In our effort not to pathologize people who are simply atypical, are we overlooking people who actually have a severe disability, or at least making them and their parents feel that way? I’ll explore this side of the question in my next post.