THEY WOULD NOT HOLD VIGIL: A RESPONSE TO RFK JR.’S COMMENTS ON AUTISM
Public domain.
As I write this, it is Holy Saturday. It is a time for holding the tension of the arrest, mock trial, and public execution of Jesus of Nazareth with the anticipation of resurrection and the harrowing of Hell. It is a time for people to reflect on their Lenten journeys, to wait, to listen, to mourn quietly together for the ways we have continued our practices of crucifixion still today.
This Holy Saturday, however, my social media feed was alight with comments on the recent Center for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring report that indicates an increase in autism prevalence rates (1). More specifically, the posts my algorithm allowed me to see are indignant and outraged at Robert F. Kennedy Jr., the current Health Secretary, for his characterization of autism (2).
For those who managed to escape this conversation, perhaps because you were learning that a wrongly-deported man was finally proven to be alive, or because you were reeling from yet another mass shooting on a college campus, here’s the gist: Robert F. Kennedy Jr. received a report from the CDC which noted that 1 in 31 of current 8-year-olds were diagnosed with Autism Spectrum Disorder. He labelled this information “shocking,” and proceeded to make highly inaccurate and incendiary remarks about the nature of life with autism, and scientifically unsound speculations about why diagnoses have continued to rise.
I understand the desire to respond and to decry; after all, I, too, am writing a response. I even understand those who broke their Lenten social media fasts to post about this. For reasons explained below, his press conference was singularly disastrous and his statements were a perfect blend of inflammatory and quotable. On the other hand, is anything truly surprising about all this? Having watched it, and having followed his comments on vaccination hesitancy (despite having vaccinated his own children), I am hard-pressed to find anything novel in his statements. His mischaracterization of autism, which spurred so many comments from friends and family on every platform I checked, is well-noted in his past statements, as is his continued promise to follow evidenced-based science while promoting the scientifically-debunked belief that autism prevalence rates can be attributed to vaccination.
Perhaps I am too jaded by the constant stream of shocking events that permeate the news. By the time this article is published, I’m sure there will be several new talking points that have shifted our cultural conversation well away from RFK Jr., autism, and vaccinations. It feels so taxing, trying to keep watch with any one of the myriad issues de jour, when our culture is designed with constant - but not deep - engagement in mind. And yet, this tension between a passing moment, so soon to be forgotten under tomorrow’s footage of inflated grocery prices and more news of Ukrainian heartbreak, and a continuation of a long-held prejudice against autism compels me to write about just what it is that we keep debating with every post about ‘vaccination uncertainty’ and ‘environmental factors.’
RFK Jr. calls for us to set aside the belief that autism prevalence rates are increasing thanks to increased screening, improved awareness, and a widening of diagnostic criteria. Instead, he insists on finding environmental factors - including vaccinations - to explain this increase. But why? Why is it so necessary to determine the why for autism? Would it help us provide better care? More educational support? Increased funding for occupational and speech therapy?
We are given the reason; in his view, and potentially now the view of the U.S. Department of Health and Human Services, autism is a fearsome foe, a danger that seeks to disrupt the American way of life. “Autism destroys families,” Kennedy said. “More importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this.” Perhaps if he had said this not about autism, but instead the shooting at Florida State, which left 2 dead, another 6 wounded, and added another horrific notch to an acquaintance of mine who has now been on campus for both this FSU shooting and 2018’s Parkland shooting, these words would ring true.
One of the major problems with this view of autism as a “preventable disease” is that it links autism with a specific tragedy, like developing encephalitis from a measles infection or being shot on your way to class. Certainly, these are specific tragedies that anyone would obviously prevent, if only there was some way. If autism is viewed like that, it becomes a suffering which must be prevented, eradicated, and remedied.
But this is to fundamentally misunderstand the nature of suffering, the nature of autism, and the nature of this very conversation around autism.
If what RFK Jr. says is correct, that autism has a source from outside of the body, that autism is added to an otherwise allistic (non-autistic) child, and that ‘having’ autism is to suffer by definition, then of course it makes sense to find that source, stamp it out, and save our children from the ignominy of being non-verbal, non-toilet trained, and unable to pay taxes. But what our Health Secretary said is simply not correct.
I will let Dean Marc Kahn of UNLV’s Kerkorian School of Medicine sum the data: “To date, we have not identified any environmental toxin that has been statistically linked in a well-designed, clinical trial… there’s a huge genetic component” (3). But just as important as the facts of the scientific matter (4), Kennedy fails to acknowledge the lived realities of the many, incredibly diverse experiences of autism. We might call this, ‘epistemic injustice,’ or the refusal to allow those who have experience of the topic at hand to be the experts. Ironically, this overt injustice has led to the unification of diverse autism advocacy groups who are otherwise often divided.
Further, the capacity to perform certain functions in no way indicates a lack of suffering, nor does the inability to do certain tasks. The ability to pay taxes has never brought me joy, shockingly. Even more importantly, a person does not lose value or worth simply because they cannot use a toilet independently; were that so, elders and babies alike could be cast aside as unfit for society. And eventually, barring an accident which takes your life early, all people, even the ones taking RFK Jr.’s expensive and untested supplements, will lose function in old age. Perhaps autism, like other forms of neurodiversity and/or disability, reminds us too much of the inevitable death that seeks each of us out. In the Eastertide of Christ’s resurrection, death has lost its sting, but not its inevitability.
Autism carries with it a disruption of expectations; some autistic people will gently violate unspoken social norms, while others may require a level of care that challenges the common expectation that individuals will develop in certain ways, learn to read, find a job, get married, have kids, and then slowly arc toward death, losing functions only at the end. "Disability brings the end-of-life function losses to life all across the timeline. There is no standard for how our bodies behave, but we still carry assumptions. Disability breaks those assumptions, shattering the illusion that we can know, or even control, what our lives will look like.” For people who cannot bear the weight of mortality, any reminder of their eventual and inevitable demise will appear as a hostile threat and an embodied threat of existential suffering. Holy Saturday is too existential a threat, and must be placated, ignored, or removed.
Autism, to those who cannot bear diversity and mortality, must be a curse, placed upon people by a cruel twist of fate and vanquished by their valiant heroism. But for those who acknowledge disability as a simple expression of innate human diversity, we can see our own mortality as benign. Losing functions, or never developing certain functions to begin with, missing milestones, these things only take on the label of 'suffering' if we refuse to accept that their lives can and do have ultimate meaning. The God of the universe, who triumphs over death itself, is more than capable of receiving the lives of all people as praise, whether verbal or not, whether toilet-trained or not, whether tax paying or not. That radically equalizes us, autistic or not, and allows us the freedom to see everyone as a gift rather than some as sufferers, no matter what our lives practically look like.
Finally, RFK Jr. fails to see that autism is not monolithic. There is not one single story of autism. ‘When you meet one person with autism, you have met one person with autism,’ as the saying goes. To claim no one suffers is disingenuous, just as it is wildly offensive and wrong to claim that autism is itself a form of suffering. No one gets to control what it means to be autistic and how that does or does not impact one’s life.
And yet, there is a single story of autism. Like the 24-hour news cycle that is designed to sweep us away from any lingering focus on any given issue, the liturgical seasons change and beckon us into a new focus. Easter comes - Christ is risen! Hallelujah! And once again autistic, neurodiverse, disabled people are expected to become an Easter people, joyous and celebratory, yet are refused access to the true joy of belonging safely in this society.
On this Maundy Thursday, Good Friday, Holy Saturday, they could not, would not wait for the resurrection. In their defence, they have been waiting far longer than 3 days. And so they did not rest, they did not hold vigil, they did not keep their words hushed and their tone respectful, although they did mourn. They responded and tore clothes and gnashed teeth and righteously condemned and refused to bow down yet again to the spectre of death, ever-present to the disability community in our eugenic-happy world. Autism experiences become united in a world that seeks to eradicate and condemn them, as has been done since time immemorial. Perhaps, it is time for the rest of us to sit and dwell with them in the darkness of Hell, refusing to celebrate our Easter hopes until we have truly seen a resurrection welcome to all.
https://www.cdc.gov/autism/addm-network/index.html
https://www.pbs.org/newshour/politics/watch-live-rfk-jr-holds-news-briefing-for-cdc-findings-on-the-increase-of-autism-prevalence
https://news3lv.com/news/arc/unlv-medical-school-dean-makes-sense-of-rfk-jr-autism-claims
Hodges H, Fealko C, Soares N. Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics. 2020 Feb;9(Suppl 1):S55-S65. doi: 10.21037/tp.2019.09.09. PMID: 32206584; PMCID: PMC7082249.
