Not that there has ever been a good time to be autistic, considering how society has pathologized us for decades now because of our differences, though to be autistic and living today in the USA has been particularly punishing in light of the current administration’s toxic rhetoric about us and what their Make America Healthy Again Commission says it has in store for us. I do what I can as an advocate, trying to counter the onslaught while contending with more emotional unease than I am accustomed to. It’s quite a lot to shoulder all at once, though I refuse to stay silent because silence is complicity, and that’s not who I am when my community is under fire.
Stigma is at the heart of their motivations. It is not difficult for those in power to succeed at bullying and dehumanizing a stigmatized, vulnerable group of people if they choose to do so. The best way to respond is to stand tall, set the record straight, and speak from lived experience.
Robert F. Kennedy Jr., the Secretary of the Department of Health and Human Services, has said that autistic people will never pay taxes. That would certainly be a welcome development, considering all that I have paid in federal income taxes and how my government is unjustly going after me and those in my community. That’s not what I would call taxation with representation, so sure, bring it on!
He said that we will never hold a job. If that were truly the case, my 29 productive years with my current employer never existed, not to mention my prior work experience. 29 years with one company. Not only is that holding a job, that’s unwavering devotion.
He said that we will never go on a date. If so, then how did I become a husband and a father? It’s not as if my marriage was pre-arranged. The woman who would become my wife and I got there in the usual way by getting to know each other while dating. Plenty of dates, I can assure you of that, RFK Jr.
These blanket statements are not only hurtful and damaging; they feed off the decades-long and prevailing autism narrative of deficit and pathology. To generalize in this fashion across a community that is as diversified as ours is reckless and dangerous. All autistic individuals bring value to the table in our own ways, regardless of the nature of the challenges we face, the types of support on which we depend, or whether we pay taxes, work, or go on dates. We are human beings who deserve to be treated as all human beings would like to be treated, with dignity and respect.
I fight back by reminding myself that nobody is allowed to define who I am but me. Heaven knows, not the government, nobody, but me.
I am a believer in the neurodiversity paradigm, which acknowledges that the human population embodies a variety of naturally occurring neurotypes (how the brain and nervous system are wired), of which autism is an example, alongside ADHD, learning disabilities, and a multitude of other neurological identities/diagnoses. RFK Jr.’s continued promotion of the long-since debunked falsehood that vaccines cause autism invalidates the reality of neurodiversity by minimizing autism down to a side effect of a vaccine. It’s a dangerous conspiracy theory that portrays autism as a legitimate reason to invite suffering and possibly death by encouraging the rejection of protection from potentially life-threatening diseases.
The Measles/Mumps/Rubella (MMR) vaccine is a case in point. At what cost, in human terms, not only with respect to the public health risks but also the stigma autistic people are up against?
The HHS Department’s research project that aims to identify the “root causes” of what they call a “rampant autism epidemic” scares me the most. RFK Jr.’s justification for referring to autism in this morally reprehensible fashion lies in the recent shift from 1 in 36 to 1 in 31 children who are known to be autistic. This shift refers not to an increase in autism itself but to an increase in the rate of diagnosis, which is a good thing. My own identification as autistic proved to be transformative for the better, as was the case for many autistic individuals I know.
Growing epidemics, diseases, and causes don’t apply to naturally occurring neurotypes which have existed within the human population since its beginning. The reason why society, and consequently this administration, describes us in these kinds of terms is because we tend to behave, communicate, socialize, think, and learn, in essence, function, in ways that are at odds with normative societal expectations. These expectations were not established with us in mind. As such, they disable us and render us susceptible to these kinds of descriptors.
The research project is predicated on the lie that autism is “preventable.” My autism profile is inseparable from who I am, so where does this leave me? RFK Jr. is arguably suggesting that I deserve to be erased.
How will the researchers go about determining a root cause? By building an autism patient database of Medicare, Medicaid, and wearables-based medical records. HHS claims that privacy will be a priority, though I can’t believe that granted everything that has already been said and done. The National Institutes of Health’s news release about the database makes no mention of prior consent.
I have read from trusted sources in the advocate community that families are pulling their neurodivergent children from services on which they have come to depend. Individuals are discontinuing medications and other treatments they need to remain healthy. They are justifiably scared that continuing these interventions will expose their medical records, which would then be used to target them.
There is more than one way to view autism. Lived experience is directly relevant. Some in our community contend with challenges that are disabling enough to lead to the outlook that autism is a disorder for which a cure is warranted. It wouldn’t surprise me if some who hold this view of autism are ok with it being described as a rampant epidemic.
I understand and acknowledge this sentiment, though I personally disagree with it. To me, autism is not merely my neurotype but my way of being. It governs how I sense and interact with the world around me. True, it brings hardship and disability, but unique and valuable personality attributes, abilities, and talents as well. The government is twisting what, to me and to many autistic individuals, is core to our self-identity into an affliction worthy of eradication.
This is an agenda of eugenics enabled largely by stigma. The epidemic, in this case, is one of ableism.
I am good with research initiatives that are neurodiversity-affirming and which incorporate the perspectives and lived experiences of a variety of autistic voices that properly represent our community’s diversity (with respect to the types of challenges we face, the supports on which we depend, race, gender identity, age, culture, etc.). There is no evidence of these approaches with the HHS Department’s research project. I am suspicious of how the project’s outcomes will be used. I fear they will be weaponized against us. I don’t trust the project because I don’t trust RFK Jr.
His vision of the “wellness farm” is troubling. America already tried that, and it didn’t work out. Some have compared wellness farms to Nazi concentration camps. Those who originally supported the concept believed that clean air, sunshine, a restricted diet, physical labor, and time could heal patients of the medical conditions that isolated them from society. It never happened. Not to mention that institutions for the disabled have historically been hotbeds of abuse.
None of this is about making America healthier. It’s about control and further marginalization of a group of people whom the current administration deems undesirable.
I have been bullied many times over the course of my life, both physically and verbally, simply for being different. I’ve been forced to the ground and knocked unconscious, only to regain awareness while lying on my back, surrounded by my schoolmates, including the bully, standing over me. At an athletic academy, I had several tennis balls thrown hard at me from only a few feet away. I’ve been played for a fool and set up to be publicly humiliated. I have heard others mock me behind my back, or so they thought. And yet, none of these incidents even remotely compare to what I am dealing with from my own government, one to which I do, in fact, pay taxes.
They are waging war on autistic individuals in ways I have never seen before. The difference this time around lies in the extent of the power that they wield and how intensely toxic their rhetoric has been. To hear the President of the United States talking about us on CNN as if we are a problem which he and his HHS secretary are committed to “solving” sent chills up and down my spine. I confessed to more than one friend that I feel as though I am walking around with a target on my back. These feelings are very real and highly unsettling.
To RFK Jr., the Department of Health and Human Services, and the current administration, I say the following:
- Do not access autistic individuals’ medical records without prior consent. Your plans to build a database of such records have raised serious privacy concerns. Please take these concerns to heart.
- If the goal of the Make America Healthy Again Commission truly is to make America healthier, stop spreading lies and saying hurtful things about autistic US citizens. Stop referring to us as an out-of-control epidemic. Stop looking for a cause where one does not exist. These actions have already had a significant adverse impact on our health and well-being. You could help make us healthier and happier by encouraging greater acceptance of autistic persons, implementing programs that educate society about the realities of autism, directing the HHS Dept. to invest more in the support services on which our community depends, and showing us some empathy.
- Any HHS-sponsored research that affects autistic individuals should be conducted, at least in part, by autistic researchers and must take into consideration the diversity of our lived experiences. Our involvement would lend legitimacy to such research projects because we live and breathe autism every day.
- We have been through more than our share of hardship. Please stop adding insult to injury. Neuronormative societal expectations have disabled us to the extent that too many of us feel as though we’re living in a world in which we don’t belong. Too many of us are forced into masking our true selves simply to fit in, often to the point of burnout. Too many of us have been traumatized as a result of being told that we must become more like those in the non-autistic majority. Too many of us have been punished, including with electric shock interventions, for not behaving as others expect us to. Enough is enough!
My wish for all autistic individuals across the US during these challenging times: no matter what comes of this war being waged against us, no matter what the government dishes out, we can fight back by reminding ourselves that nobody is allowed to define who we are. Nobody but us.
Sam Farmer is a neurodiversity advocate, writer, author, and public speaker. Identified later in life as autistic, he shares stories of lived experiences as well as ideas and insights as to how one can achieve greater happiness and success in the face of challenge and adversity. A Long Walk Down a Winding Road – Small Steps, Challenges, & Triumphs Through an Autistic Lens is his first book. Visit samfarmerauthor.com to learn more.
