My story as an adult with autism

RFK Jr's conspiracy theories motivated me to stop hiding

There is a lot for me to say about being an adult on the autism spectrum. It is hard to know where to begin, especially after much recent commentary, some of it quite ludicrous, about what it is like to have autism and what causes autism. As a non-scientist, I won’t attempt to debate the current Secretary of Health and Human Services, whose name I am loathe to spell out. It’s hard for me, as an admirer of the late Robert F. Kennedy (1925-1968) to speak about the son and namesake who now walks lockstep with the fascist presidency of Donald J. Trump. Nevertheless, it’s true that I am not in a position to debate even an environmental attorney who, as the head of federally funded healthcare research in the United States, is speaking with authority about a neurodevelopmental disorder. It is clear from a cursory glance at the biography of this person that he is highly educated. However, I’m uncertain as to how his law degrees and his admittedly admirable fight for the wellbeing of the Hudson River qualifies him for the position he currently occupies. But ok. Let’s put that aside and assume that the environmental attorney (who used to be a Democrat and once described Donald Trump as a dangerous demagogue)¹ is a credible spokesperson for the medical field. The summary of his thesis about autism seems to be that it is caused by environmental factors (like, say, vaccines)² ³rather than the broader, more widely accepted, and peer-reviewed judgement that it is a case of genetic neurodivergence. Kennedy has given himself until September to find the definite cause of autism. It’s a formidable undertaking. It’s also an ambitious timeline, given the high number of employees at the CDC and the NIH who have been fired since Kennedy was confirmed in the role of Secretary of HHS.⁴ I never agreed with the argument that fewer employees make an organization more effective, but if Kennedy thinks he can find the cause of autism in five months with a greatly diminished workforce, who am I to be a naysayer? Look, Kennedy is not a medical professional. Neither am I. The thing about me, though, is that I read things by, and listen to people who are knowledgeable in their fields. It isn’t possible for any of us to know everything. In order to be a functional society, sometimes we have to ask questions and trust people who have studied and labored in areas we know nothing about. I realize sometimes it means taking a leap of faith, like when you sit in the dentist’s chair. It never occurred to me to have a debate with my dentist about the cause of cavities.

I digress.

What I really want to emphasize in this article are the ways in which my personal experiences do not match RFK Jr’s suppositions about autistic people. I heard him wondering why no one was ever diagnosed with autism prior the 1980s, and even then it was quite rare. Well, first of all, autism was not even on the DSM until 1980. Even in the 1980s, there was a lack of awareness and understanding about it. It took many years for professionals to learn to recognize the signs. It took even longer for healthcare providers to start being aware that autism is even harder to recognize in girls than boys. I like the way Lisa Jo Rudy puts it: “A girl who seems shy and withdrawn might be seen as feminine, while a boy with the same characteristics would receive intervention because he is not exhibiting more outward, typical ‘boy’ behavior.”⁵ RFK Jr. was born in 1954 so when he was growing up there was no one being diagnosed on the autism spectrum.

I was born in 1977; still, no one was talking about autism. I was an undiagnosed kid. Teachers and doctors assessed me as “dreamy”, “head in the clouds”, intensely shy, non-communicative, preferring to play by myself than with other kids. What they failed to see was that the other kids either bullied me or shunned me as “weird,” so I stayed quiet and tried to be invisible, not so much because I preferred it but because it was safer that way. I had a friend from the age of five who lived next door and her mom later told me that it was many weeks before I would speak to them. There was no awareness at the time that my “problem” (“problem” it certainly was called) was autism. As a New Adult, there were diagnoses like AD(H)D, Major Depressive Disorder, Anxiety, and even Cyclothymia. Asperger’s was considered as a possibility, but Asperger’s was retired from the DSM in 2013. It is now diagnosed on the autism spectrum. Before 2013, there was a clinical psychologist who tested me for Asperger’s. He concluded that Asperger’s was not the right diagnosis. I remember that he thought a broader autism diagnosis more appropriate. I’ve read a lot of accounts from adults with autism which echo my own experiences in multiple ways—the “masking” of traits, the repetitive/destructive behaviors, and awkwardness in social interactions stemming from misunderstandings and misreadings. Due to these difficulties, I still struggle with social confidence and do a lot of hiding. Often, I hide from social interactions out of a fear of doing something else inappropriate or making another mistake. However, in contrast to RFK Jr’s assessment of autistic people, I pay taxes every year. While I have struggled to find my way in terms of steady employment, I do excel in specific areas, like writing and reading. I’m good at jobs that are not too neurotypical, where some flexibility and creativity is allowed. I did well as a part-time employee in the research library at the archives because I was free to tailor the tasks to my specific skillsets. My supervisor was not a micromanager; he gave me a great deal of latitude. Also, I had a fellow neurodivergent for a coworker; frankly, in retrospect, I realize my supervisor was probably neurodivergent as well. I was less successful in the stricter environment of the public library. I have found the public library not to my tastes for several reasons, most of which are difficult to explain. Many people consider the librarian at the public library to be warriors, serving on the front lines, heroically battling book bans and misinformation. The truth is that the lower-level librarian really does not have much say in anything. The American Library Association and so on down to the library director call the shots, driving overworked, emotionally drained staff to set up programs no one attends. The reference librarian, the children’s librarian, the teen librarian, and the circulation librarian follow a rigid set of protocols. They are overworked public servants who work alternating seven-day weeks, with only a half-day and three-day weekend to break it up. The three-day weekends are great, but I found it very stressful to have to go back to work Monday after working seven days straight. I found that librarians in the public library system are valued only for their conformity. There was no place for my neurodivergence in that environment. In short, I will say that I agree with RFK Jr. insofar as to say that it has been challenging to find jobs where I can thrive. I thrive in places where I can do a lot of writing and express myself creatively, and let’s face it, there aren’t many jobs where that is encouraged. Or, put it this way, those jobs require some creativity to locate and nail down. I’ve been told all my life that I’m an “outside the box” thinker, a square peg that people have tried to fit into a round hole. I’ve done a lot of masking along the way. I’ve gone invisible. I’ve humbled myself. I’ve been quiet when I could’ve spoken up.

RFK’s statements about autism awakened something in me. On April 21, the Secretary of HHS proposed having an “autism registry”. Then, on April 24, after people like me with autism freaked out, because the notion of a government “autism registry” evoked scary Orwellian ideas, HHS walked it back.⁶ RFK had suggested that the registry would’ve been created for the purpose of collecting data for the autism studies that he wants concluded by September. Unfortunately, RFK belongs to the Trump Administration, which has acted in terrifyingly authoritarian ways toward immigrants, sovereign nations, federal workers, universities, and judges. Naturally, when a person in that administration spoke about an “autism registry” red flags went up for many people. Why would the HHS want access to private medical records to make a list of people diagnosed with autism? I saw some people on social media speculating about nefarious goals like eugenics.⁷ Parents of children with autism worried about their kids being hunted and labeled unfairly.⁸ ⁹ It is hard to not be worried when the Trump Administration makes a statement like that. After all, Donald Trump himself said he would like to bring mental institutions back, to get people struggling with mental health issues and drug addiction off the streets.¹⁰ So what are we supposed to think when the same administration that has, through its “DOGE”, collected social security data¹¹ proposes to violate HIPAA by publicly listing people’s medical information?

A further cause for alarm is the person RFK has chosen to conduct the ambitiously timed study for the “cause” of autism. His name is David Geier. He is not a medical doctor. He is not even a psychologist. His only credential is a bachelor’s degree in biology.¹² Yet he was for a time practicing as a physician in Maryland. The Maryland State Board of Physicians disciplined him in 2011 for practicing without a license. The Washington Post reports that he is listed as a “data analyst” in the HHS employee directory.¹³ David and his father, Mark, have a long history of quackery and promoting conspiracy theories.¹⁴

So I don’t know. RFK, an environmental attorney, is heading up the Department of Health and Human Services. He plucks a “data analyst” to find the “cure” for autism, a man who was found in the past to have used autistic children in highly controversial studies, with accusations of misrepresentation and financial conflict of interest.¹⁵ Find the “cure” by September? I doubt RFK’s study is going to achieve its goal and I fear that they won’t be honest about what they find anyway.

FOOTNOTES

1.

2.

3. https://autisticadvocacy.org/2025/04/trump-and-kennedy-spouting-dangerous-autism-misinformation/

4. https://www.npr.org/sections/shots-health-news/2025/04/05/g-s1-58312/hhs-layoffs-rif-cdc-fda-nih

5. “Autism in Girls,” by Lisa Jo Rudy, pp.46-48, Autism: A New Understanding, Verywell special edition © Meredith Operations Corporation 2023, 2024, 2025.

6. https://autisticadvocacy.org/2025/04/hhs-walks-back-autism-registry-plans/

7. “Dangerous Eugenics-Like Policies Are Shaping America's Healthcare.” The Majority Report with Sam Seder. April 17, 2025.

8. https://www.rawstory.com/rfk-autism-registry/

9. https://www.theguardian.com/commentisfree/2025/apr/25/rfk-jr-autism-registry

10. https://www.npr.org/sections/shots-health-news/2024/11/13/nx-s1-5188664/trump-mental-institution-tent-city-addiction-unhoused

11. https://www.cnbc.com/2025/04/21/court-blocks-doge-access-to-sensitive-personal-social-security-data.html

12. https://www.nationalreview.com/news/vaccine-skeptic-who-used-chemical-castration-drug-to-treat-autism-tapped-to-lead-federal-immunization-study/

13. https://www.washingtonpost.com/health/2025/03/25/vaccine-skeptic-hhs-rfk-immunization-autism/

Gift link: https://wapo.st/42ViOG9

14. https://autisticadvocacy.org/2025/03/asan-appalled-by-hiring-of-quack-david-geier-for-hhs-study/

15. https://pmc.ncbi.nlm.nih.gov/articles/PMC5705728/

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