RFK Was Right: Severe Autism Can Be Devastating
Which doesn’t make him right about vaccines.
Last Thursday, at a press conference announcing the CDC’s new autism prevalence rates—1 in 31 kids affected, up from 1 in 36 two years ago—HHS Secretary Robert F. Kennedy Jr. described “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.”
Pretty benign account of profound autism, I thought. If it had been me at the podium the reporters would have gotten an earful about traumatic brain injury and blindness from self-injury; seizures, insomnia, and constipation; emergency surgery from pica (the compulsion to eat inedible objects); drownings following elopement; parents who live in a near-constant state of crisis. Baseball? Poetry? Not even on the wish list.
So when I saw this exact excerpt from Kennedy’s press conference circulating on social media, I initially assumed it was out of empathy, to support profoundly autistic people and their families. But no. Parents of more mildly affected kids took to X to set Kennedy straight: their autistic children were Eagle Scouts, concert pianists, published authors, college students with perfect GPAs. Then came the posts from self-proclaimed allies, offended on behalf of these accomplished autistic children. Elizabeth Warren dismissed Kennedy’s descriptors as “lies” because “autistic people contribute every day to our nation’s greatness.” She called his version of autism “disgusting”—an invective that reverberated across the platform, echoed on big accounts—including those of Atlantic contributor Jemele Hill and Columbia School of Journalism faculty member Marlow Stern.
I have been advocating for my son Jonah, 26, and his profoundly autistic peers for two decades, and I’ve also been on the receiving end of countless insults and attacks. Every time I’ve described Jonah’s challenges—a history of aggression that necessitated an almost year-long hospitalization when he was only nine years old; minimal speech and no abstract concepts; a complete lack of safety awareness that means he can never be left alone—I’ve been attacked for my “dehumanizing” and “ableist” language.
Neurodiversity proponents, who consider severe autism an identity rather than a devastating neurological impairment, have accused me of hating my son and proclaimed that I should lose custody of all my kids. But nothing I’ve ever encountered hit harder than that one word, disgust. Because that was targeted not at me, but at Jonah. People like Warren, Hill, and Stern—whose experience with autism, if any, apparently does not include the most severely affected end of the spectrum—explicitly cited Kennedy’s list of nevers and found it “disgusting.” Not sad, not extraordinarily challenging, not deserving of support, but disgusting. If there’s a more dehumanizing and ableist word, I can’t think of it.
Obviously, Kennedy’s description doesn’t apply to all autistic people. Earlier in the press conference, he referred to the “25% of the kids who are diagnosed with autism [who] are non-verbal” and frequently exhibit dangerous behaviors, such as “head-banging.” This reflects a 2023 CDC prevalence study that reported that 27% of autistic children meet the criteria for profound autism, meaning they are minimally verbal or non-verbal and/or severely intellectually disabled (with an IQ below 50). It was obvious to me that this was the segment of the autism spectrum Kennedy was talking about—something he later clarified on Fox News. Even if it wasn’t obvious to everyone, the reflex to reject this narrative because it doesn’t comport with your own experience or understanding struck me as incontrovertibly myopic and illogical.
Also not generalizable to all cases is Kennedy’s claim that “autism destroys families”— something many critics were quick to challenge. Actress Holly Robinson Peete retorted in a recorded response that “autism didn’t break my family. It made us braver, it made us closer, it made us more compassionate.”
Autism didn’t break my family, either, because we had the time and skill-set necessary to navigate the fragmented educational, and now adult, disability service systems as well as—and this is what really matters—the resources to fill in the gaps. My husband and I both hold jobs we love; we have coverage for date nights, workouts, and other forms of self-care; our four other kids were never told that they couldn’t do something or go somewhere because of their brother. For Peete not to acknowledge this incredible privilege, or the hundreds of thousands of aging parents facing a lifetime of round-the-clock and intensive care provision because they lack it, is unconscionable.
Importantly, this is not a defense of Kennedy or his entire agenda. Most of his autism rhetoric is alarming: his obsession with vaccines, despite dozens of studies that proved they do not cause autism; his choice of an unqualified, noted vaccine skeptic to spearhead new research into autism; his fantastical promise to identify the cause of autism by September; his administration’s threats to Medicaid and NIH. We can and should fight for necessary research, as well as robust and evidence-based supports that reflect the diverse needs and preferences of a very heterogeneous community.
But we can do that without minimizing, or, as happened last week, flat-out denying the realities of profound autism. And it neither dilutes nor defangs our advocacy to thank Secretary Kennedy for shining a light on the segment of the autism spectrum that has been increasingly marginalized by a focus on the most capable, and to agree that this very vulnerable and impaired population must be foregrounded in our national conversations about autism research, policy, and practice.
Amy S.F. Lutz is a historian of medicine at the University of Pennsylvania in Philadelphia and Vice President of the National Council on Severe Autism.
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I subscribed to say thanks for your reasonable position. As someone with what I am told is likely a mild touch of autism, I found RFK's statement admirable.
I do not know what he will do, but I do think it would be really good to give the profoundly autistic individuals and their families+caretakers the help they need, and people playing language games around this are not offering help.
Thanks again, Alex
The rise of autism as an “identity” is in part a side effect of the “woke” project to rename or redefine anything associated with a scientist whose personal views or positions don’t comport with present-day standards—specifically, the decision to abolish “Asberger’s syndrome” and fold it into simply the “Autism spectrum.” In some circles it has become downright fashionable to identify as autistic, and while it is mostly young people who are formally diagnosed as autistic/ASD, there has been something of an explosion in the number of middle aged or older people, often highly accomplished, newly identified as autistic. There really should be a separate name/category for people who successfully navigate life with only minor issues (feelings of inadequacy, social anxiety, etc). I’ve never really seen a clear explanation of what these people have in common with the severely autistic. I do know there is an in-between of sorts, I have an autistic cousin who didn’t learn to speak until his teens, and for many years spoke in an odd, mechanical way and mostly about obsessions. I saw him again when he was in his 30s and working, he presented as basically “normal” by then—he clearly had the benefit of affluent parents and the best education available. Some of the most severely affected may not be able to make such progress, but it would probably be helpful to have better language to describe this rather than just “spectrum” which is so vague as to be almost meaningless in describing whatever autism is.