Thoughts on effectively countering RFK Jr.
We must be clear-eyed on our goals, not our doctrines
TW: Explicit discussion of male health issue
Last year, I volunteered to take part in a corporate event centred around an autistic individual with higher support needs than I. My goal was to avoid hijacking the focus away from this individual, but to put forth nuances that one might miss from this individual’s story alone: it is easier said than done, but it is one of those tight-ropes that a good autistic self-advocate must walk.
I think I handled the event with finesse. I shared what I was going to say with the other panelists beforehand. I made clear that I thought the organization hosting the event had a lot to gain by hiring more autistic employees.
This other autistic individual’s caregiver claimed to agree with me on a lot of things even though I do not think they did. This would normally be the diplomatic thing to do but it was hurtful in this case. The caregiver established a distinction between me and the other autistic individual; I had never expressed suicide ideation, I never self-harmed, and I had never banged my head against a wall.
This was a sharper distinction than was accurate. True, I never banged my head against a wall to the point where I needed a helmet or medical attention, but I had done so at several points in my youth. I do not think I ever self-harmed beyond that, but my parents had characterized some of my stims as such (such as when I would poke the skin of my arm with a fingernail). While people must talk about the crisis of autistic suicide, we must also be aware that defining suicide ideation can be quite blurry when autism is involved. When I told my mother that I wanted to be with my deceased grandfather when I was six, she certainly interpreted it as suicide ideation though I think the bigger issue was that I was six and did not understand death. I was placed on SSRIs shortly thereafter and remained on them at an abnormally high dosage through adolescence, with the most troubling after-effects only recently resolving. As people (including Secretary Kennedy himself) tend to talk about SSRIs vaguely in a way contributing to misinformation, I will be blunt: it was only this year, at the age of 31, that I learned how to masturbate. Sometimes putting a young person on a high dosage of SSRIs is necessary but there are potential consequences; and I do not think it was ultimately necessary in my case.
All in all, I was in a position where I was on a panel where a co-panelist was making up stories about my life in a way which was misleading to the audience. Because it was a corporate event, it was not socially acceptable for me to correct the record, so I did not. I share this anecdote not because I am still angry about this, but to demonstrate that, while plenty of autistic people have vastly greater support needs than I, we should not let a non-autistic person define what the distinctions are between those autistic people and myself. The people most eager to draw these distinctions do not usually have the background knowledge to define those distinctions accurately. This is a point I try to avoid discussing where possible, but it is necessary to point out considering recent events.
By now, you are probably aware of the US Department of Health and Human Services Secretary Robert F. Kennedy Jr.’s comments in relation to recent figures from the CDC indicating increased autism diagnoses. The Autistic Self Advocacy Network (ASAN) has put out a statement which I think puts forth the general neurodiversity line well. ASAN has also signed onto a joint statement with many other autism advocacy organizations, including the Autism Society of America and Autism Speaks. It is worth noting that it is hard to get these organizations to agree on much of anything. Secretary Kennedy, to his credit, is bringing people together, though I would point out that he seems to be bringing people together against him, which may be counterproductive considering he is a cabinet secretary for a major world power.
Excluding the occasional joke about my having written a paper about autistic people paying taxes, I have kept my mouth shut about Secretary Kennedy’s comments, largely because I do not see how my initial reactions would be different from anyone else’s. More interesting than Secretary Kennedy’s comments, however, are people’s responses to his comments. Despite Secretary Kennedy’s apparent best efforts, the conversation has moved beyond just vaccines several years ago. It is the anonymous and semi-anonymous rantings on the social media sphere which can tell us which messages connect and which do not.
I think the most interesting sentiment I have seen is the idea that the DSM-V merging autism into a singular diagnosis was a mistake. Emily Paige Ballou has provided a solid response to this idea in a thread on X. In essence, the distinction between Asperger Syndrome and other forms of autism was that individuals with Asperger’s were viewed as “slightly off” whereas other autistic people were viewed as profoundly disabled. Reestablishing the old categories of autism runs the risk of leading to low support needs autism being viewed as “social awkwardness” best handled through behavioural interventions in childhood and few other services.
In addition, language development was the main distinguishing point between Asperger’s and other types of autism; this distinction obfuscates more than helps because even autistic people who fit the stereotypical “Asperger’s” profile can have language delays in childhood (including yours truly).
In short, these distinctions were ham-handed and counter-productive. To understand autism, we need to properly examine the similarities between autistic individuals as well as the differences. The emphasis I place on sensory and emotional regulation in my presentations and writings have come through observing autistic individuals at all levels of support needs. Much of the early medical research supporting a sensory-centred view of autism would not have come from observing “aspies,” it would have come primarily from observing autistic people who might now be referred to as having “high support needs.”[1]
Understanding autism is necessary to optimize the provision of autism services. I have speculated that de-emphasizing (not eliminating) behavioural interventions and placing a little more emphasis on occupational therapy, sensory therapy and physiotherapy might result in better long-term outcomes for autistic individuals as they enter adulthood.
Beyond that, understanding autism is necessary for autistic people who seek self-improvement. By understanding how to regulate my sensory and emotional inputs I think I have made myself a better friend, family member, student and employee. Had I just operated on the “low theory of mind” idea and let the traditional narrative guide me, I would not have improved at all. To just accept that the main issue is social incompetence would be to wave the white flag on myself; this would be especially tragic considering that it is not even true.
I agree that certain parts of neurodiversity doctrine get silly; the concept of neurodivergence as culture which has become popular in DEI spaces has fundamental flaws, and also acts as a deterrent to self-improvement.[2] However, to the extent that people on the right and centre of the political spectrum see the entire neurodiversity movement as an example of how postmodernism ruins everything, I would urge them to resist assuming that the previous diagnostic categories of autism were fine or that a philosophy of treatment primarily centred around behavioural interventions should go unchallenged.[3] To completely torch everything that has come from the neurodiversity movement and go back to things the way they were before would impose extractive pressures on many autistic people. It could discourage self-reliance on the part of those autistic people who, despite garbage employment numbers across the spectrum, could become productive with time, hard work and independent self-reflection. The autism debate shows how conservative culture war politics can go against the supposedly conservative ideal of “rugged individualism.” Many “common good” conservatives are increasingly open about this ideological conflict, but I think those of the classically liberal persuasion who want to define the current battle between left and right as one of “makers versus takers” should re-examine the direction of the culture war with regard to disability. Right now, both ideological extremes discourage personal initiative among disabled individuals, and this is particularly true about autism.
Secretary Kennedy’s sentiments regarding autism and the policies he is implementing generally create a primordial soup of stupidity; some of the worst takes regarding autism usually arise in support of or in refutation of his ideas. You cannot engage in an intellectual conversation with someone who makes allegations without evidence and lacks the ability to understand the evidence even when it is available. It is a tragedy that Secretary Kennedy is now in charge of setting federal autism policy, it is even more tragic that he is leading the discussion. I suspect that, over the next four years, autistic self-advocates will not only have to address the claims made by the Secretary of Health and Human Services and fight most of his policies, but will also have to address all the stupid side conversations which develop in response to his claims like a game of “Whack-A-Mole.”
This is unfortunate from a Canadian perspective. We have historically been dependent on the US for insights on things like autism services and the discussion in the US was changing before the new administration brought that discussion to a sudden halt. In January, I attended a law and disability conference on Long Island in New York which placed increased emphasis on neurodivergence and autism specifically. Few people at this conference would fit the exaggerated stereotypes about neurodiversity activism; these were established names in the autism services sector with real world experience. Despite that, the conversation was changing, a leading practitioner of Applied Behavioural Analysis was talking about spotting sensory sensitivities in clients, for example. Letting Secretary Kennedy redirect the conversation to vaccines will prevent us from discussing the most pressing questions regarding autism. I personally think it is important to properly articulate what autism is before we can accurately determine what does or does not cause it. Secretary Kennedy has made clear he will do anything in his power to stop that conversation.
I think that if there is anything good to come out of Secretary Kennedy’s time in cabinet, it will be that it challenges autistic self-advocates to think about which arguments are essential and which ones are not. A common response to these reported increases in numbers is that they purely come from increased diagnoses rather than increased prevalence. I think this is the most likely cause, and if not a singular cause, it is certainly the leading cause. However, I want to point out that autism could be caused by purely genetic factors and you could still have an increase in the prevalence of autism. For example, changes to the economy and society could lead to changes in sexual selection resulting in more autistic children being born. We need to be prepared to counter the US federal government if it starts saying that the cause of autistic people are other autistic people, as that line of conversation is even more dangerous than the line on vaccines. Instead of throwing the word “eugenics” around, we need to start articulating what that actually means. I do not think the Trump Administration is actually functional enough to implement this sort of agenda (I also do not think even Secretary Kennedy’s supporters among the most extreme elements of the parents’ lobby are interested in having their own bodily autonomy violated), but it may serve as an inspiration to the reactionary politics of the future.
I think we need to know when to fight battles and when to not. People are going to be quick to argue that autism is caused by vaccines or metal exposure and sometimes the proposed solutions in that regard may cause more harm than they would prevent. The idea that a parent could consent to have their kid put into endless chelation sessions should be a cause of concern. In addition, many of Secretary Kennedy’s proposals such as creating an autism registry indicate a deep disrespect for individual bodily autonomy. A lot of autism advocacy can get very doctrinal and lost in the weeds, but we should focus on respecting the autonomy of autistic people above all else.
[1] See Ornitz EM. The functional neuroanatomy of infantile autism. Int J Neurosci. 1983 May;19(1-4):85-124. doi: 10.3109/00207458309148648. PMID: 6874265.
[2] I would argue that combatting the concept of “disability as culture” is perceived by many thinkers on the right as being a front in the broader culture war. A key example of this from the past six months is Christopher Rufo et al.’s objection to sign language interpreters during press conferences relating to the California wildfires. In combatting hearing loss as culture, I think the Rufos of the world had combatting autism as culture in mind as well.
[3] It is worth noting that there are people on the left who never bought into the neurodiversity movement as well; there are several reasons for this. One reason is that rethinking autism would affect the provision of services, some of which are publicly subsidized and provide good sources of middle-class employment. Another reason is that viewing autism as a multifaceted nervous system disability rather than a psychological or psychiatric disability challenges quasi-religious assumptions that many on the left have about the mental health sciences.