Last week, when RFK Jr. made a speech in response to the new autism rates published by the CDC, there was a significant amount of backlash from autistic people and their families. There were also autistic families that felt relief that someone was finally highlighting the immense challenges faced by their own autistic loved ones who have high support needs, but often find available services to be inadequate. I truly empathize with this latter group. While I and my autistic child do not fall into the group of autistics with this level of support needs, I have worked over the years in mental health, home and community-based services, in my education projects, and in my advocacy work to support these families. While doing education and advocacy projects, I have also devoted much of my own time to studying the history of disability both in the United States and around the world. Because of this, Kennedy’s words chilled me to the core.

To hear autism depicted as something preventable that “destroys families,” to hear autistic people highlighted as not doing things like dating, playing baseball, writing poetry, using the toilet, holding jobs, paying taxes, etc. I did not hear someone discussing the most challenging aspects of the autistic neurotype. What I heard was someone characterizing the autistic community as “worthless” dregs on society who have nothing to contribute to the world. I heard echoes of eugenics.

Americans forget, or may not even know, that while Hitler took the theory of eugenics and used it to murder 10 million people, AMERICANS were the ones who came up with this theory. In the early 1900s, Americans fully bought into the fact that some human beings were more fit than others. They used this philosophy to begin sterilizing individuals who were seen as “feebleminded” and less-than, making it imperative that they not procreate and pass on their substandard genes to the next generation. It was standard care to forcibly sterilize individuals with neurodevelopmental disabilities, intellectual disabilities, and a variety of mental health struggles. This practice was even upheld by the United States Supreme Court in Buck v. Bell (1927). While this case was regularly challenged and this type of sterilization is no longer considered ethical, this case has never been fully overturned and I myself have met multiple Millennials with intellectual disabilities, some with co-occurring autism, who were sterilized as teenagers in order to prevent them from having children.

Image from Popular Science magazine, 1923. “Registering Human Pedigrees.” https://www.pbs.org/independentlens/blog/unwanted-sterilization-and-eugenics-programs-in-the-united-states/

Let’s also not forget that until the Deinstitutionalization Movement, for about 100 years, disabled Americans with high support needs were warehoused in horrific institutions and kept out of sight from the rest of the world. Their families were told to “forget about them” as this was what was best for everyone. Let’s not forget the Willowbrook State School in Staten Island where disabled children were purposefully given hepatitis from 1956 to 1971 so that scientists could study the effects of this disease on the human body. Shutting down these institutions began in the 1950’s and lasted through the 1970’s or 80’s. This means that Generation X is the first generation of disabled adults in a century who have been allowed to be full members of our society.

I have found through my education and advocacy work that because of this history, the support systems in our country are grossly inadequate. Our society didn’t and doesn’t know what disabled people need or what we are cable of because society chose to ignore the disabled and not to let them try. We thought that autistic people only included those who were most severely impacted. We thought that disabled people were asexual. We thought that people with Down syndrome were incapable of being potty trained. We thought a lot of things that weren’t true, but disabled people have been fighting back, almost since the United States became a country, to make sure that our voices are heard and we are not forgotten and devalued.

All of this history and more is why hearing RFK Jr. talk about autism last week chilled me to the core. Finding out today that he plans to use the National Institutes of Health to track and study the private health information of autistic people only adds to my fear. Autism and autistic people have always been here. We are valuable members of society. Yes, even those of us who may not date, play baseball, write poetry, use the toilet, hold jobs, or pay taxes. We are valuable because we are human beings. We are valuable because our brains are wired differently and we have different perspectives and see the world in unique ways. Do not devalue us. Do not forget us. Do not let us be eradicated and erased. Raise your voice with us and let the world know that we need better supports. Raise your voice with us and let the world know that the world and the United States is a better place BECAUSE of the fact that 1 in 31 (3%) of us are autistic.