Want to Help Autistic People, RFK Jr.? Address Our Chronic Health Care Disparities.
Autistic people aren't just held back by social struggles, but by health and treatment challenges the medical system is unprepared to address.
Formed by researchers in opposition to RFK Jr.’s new interagency research committee on autism, the Independent Autism Coordinating Committee (I-ACC) had its first meeting and is now accepting public and written comments.
Meanwhile, RFK Jr.’s committee meeting, which was scheduled for the same day, was cancelled.
Take it from me, a young woman who is on the autism spectrum herself: The I-ACC is right to raise questions about RFK Jr.’s committee.
While his passion to serve our community is refreshing and heartwarming, if RFK is genuine in his desire to help, he should become more aware of what people in the autistic community need.
RFK Jr.’s committee, the Interagency Autism Coordinating Committee (IACC), seeks to combine the expertise of federal and public perspectives from professionals in psychiatry, family medicine, research, neuroscience, social sciences, activism, and more to create “a public forum for discussions related to ASD research, services, and policy.”
This mission is too broad. Yes, it comes after a long string of efforts by the Health Secretary to increase awareness of autism and its potential causes, but it ignores the real needs facing those of us living with the condition — namely the need for access to unique medical care.
Some symptoms of Autism Spectrum Disorder (ASD) are well-known, like communication and socialization issues, repetitive behaviors, and specialized interests. Secretary Kennedy has acknowledged these symptoms throughout his advocacy for investigation into the disability.
But while most of his focus has been on the existence of the diagnosis itself — the cause of autism, its treatments, and how to prevent its rapid rise — so far, it appears the focus remains solely on prevention and social integration.
But autism is more than social difficulties and strange habits. Often, it includes a variety of chronic illnesses with heightened severities that the medical community is not prepared to treat.
92% of women with ASD meet the diagnostic criteria for Premenstrual Dysphoric Disorder (PMDD), a condition characterized by extreme and disabling symptoms such as mood swings, depression, cognitive and memory failures, and intense pain, lightheadedness, and weakness that rises to the level of physical impairment.
I can speak to this personally as someone diagnosed with both ASD and PMDD. Before I found an effective treatment, I could go from completely stable to struggling with intense suicidal ideation and planning. The next moment, I would be too weak to hold up my own body, laying on the ground for up to five hours waiting for my body to process my shifting hormones. Once, when I didn’t rest, I lost consciousness and hit my head. The concussion was so severe I was barely able to move for two weeks.
The risks don’t end with PMDD. Those with ASD are also at high risk of seizure conditions, as well as more severe postpartum depression, menopause, and polycystic ovary syndrome (PCOS). Studies have shown that women with PCOS are almost twice as likely to have autism than the general population.
The answer to this seems simple at first glance: Give autistic people access to the treatments they need. But healthcare isn’t equal to everyone, especially not to those with ASD.
Those on the autism spectrum have increased adverse reactions to medications. Everything from acetaminophen to vitamin supplements can have severe side effects for those with ASD. Some can be deadly.
I have struggled my whole life to find medical treatments that work for me. As a child, I had to have medication injected into my leg because my body rejected it orally. I no longer respond to acetaminophen or ibuprofen, giving me few over-the-counter pain, allergy, or flu options.
During my worst adverse reaction, a medication made me have hallucinations — physical, auditory, and visual — every time I became tired. At one point, the vivid hallucinations made me think someone was smothering me to death. Hallucinations were not listed as a possible side effect.
Because of these unexpected reactions, autistic people are often excluded from medical research out of fear they will skew results for the general population. Some institutions also cite consent of the disabled as an issue despite the presence of autistic people like myself who, while not categorically high-functioning, are capable of understanding the risks of their participation in clinical trials. We are even left out of research into autism itself, especially if we have a coexisting condition or intellectual disability.
This problem won’t go away anytime soon. Current research shows that ASD is based much more on genetics than environmental factors. While the Secretary’s new research could unveil some new knowledge, it does not erase this fact.
Many autistic adults go on to have children, often with a partner who also has autism or a similar disability. Even if we eliminate environmental factors, the current population of autistic adults is likely to have children who will also have ASD. Their needs will still need to be met.
Secretary Kennedy has acknowledged some of the challenges those with ASD are facing. There is a reason 42% of autistic youth do not get jobs in early adulthood. Even I have struggled to maintain my career because of my disability and the health issues it causes. Decades of attempted treatments have shown that when treatments do work, they tend to only work for a short time. Because of this, I live every day knowing I may not live this way tomorrow.
Why hasn’t RFK Jr. acknowledged this massive issue despite his efforts toward true care for autistic people? Why hasn’t anyone addressed this? How are we supposed to work without treatments that allow us to hold a job? How are we supposed to participate in society to our full potential when the medical research that is being done refuses to address our full needs?
If Secretary Kennedy is serious about wanting to help those with ASD, he needs to focus less on prevention and more on medical advancements that actually advance our prosperity.
Olivia D’Angelo is a policy analyst, writer, and editor on the autism spectrum. She has been featured in The Washington Post, The Daily Wire, Newsmax, and The College Fix. She is currently a contributor at Young Voices. Follow her on X: @olivia_dangelo