You are an urgent public health crisis
RFK's Autism attacks and Autism Acceptance Month
It’s Autism Acceptance Month, and last Thursday I met with five other parents and a teacher in our school library to do our annual Autism Read-In. As usual, the effort was completely last-minute and a bit miraculous, but also as usual, people showed the eff up. Parents (of neurodivergent kids and non) signed up to read, the Teacher on Special Assignment created a schedule and sent it to everyone, a Special Education teacher envisioned a bulletin board of collected school-wide strengths to show our neurodiversity, the librarian gathered books from the neurodiversity section we built with a grant (including Tiffany Hammond’s great A Day With No Words), and I brought snacks and gave the quickest introduction to anti-ableist teaching I’ve ever done
I was assigned to the fifth-graders, whom I showed the Pixar short Loop, about a non-speaking Autistic tween and her neurotypical peer on a canoe trip, which is free online this month (and which was informed by Autistic adults!). I thought they might laugh or goof around (fifth graders in April are essentially middle schoolers, lord help us), but they didn’t. They asked about the word disability, about why people stim. They talked about what they do to calm down and feel safe, and how they identify as ADHD or feel disabled by certain school environments. It was my personal heaven.
Meanwhile, in Autism hell, because the daily toll of living in a neurotpyically-designed world is not enough, our government is piling on extra bullshit! Earlier last week (after declaring this month Autism Awareness Month, a well-informed, nuanced dig at Autistic advocates’ preference for the word “Acceptance”), the Trump administration and its golem, RFK Jr, spread lies, hate, and uber-ableist thinking that some have likened the eugenics movement (also here).
In a cabinet meeting and later in an interview with Fox News, Kennedy said a bunch of incorrect and morally reprehensible things, and made great plans to erase Autistic people from society.
"This is part of an unrelenting upward trend," Kennedy squeezed out in human-ish-fashion out of his leathery neck-topper.
When I gave my son the download from Kennedy’s talk, still in a rage, I said “I bet he doesn’t know actually anything about Autism!”
“Maybe he did,” my wise 9-yo replied, “but it was in the part of his brain that got eaten by the worm.” My work, as a parent, is done.
Many Autistic adults have expressed tremendous pain at having been made to feel like a burden by their parents, and are upset by discussions of the difficulties of raising Autistic kids (March 1st is the designated International Disability Day of Mourning for the disabled children who are murdered, usually by caregivers - if you visit the day’s record keeping site, you will note at least a half dozen already this year).
This is a real concern. I have learned so much from these voices (Quincy Hansen, the folks at the Autistic Self Advocacy Network, and more), as have many parents. Many of this is wrapped up in disability, but some of it is also just about the universal dynamics of the parent-child relationship. We all have our own egos, our own needs. Parenting is hard — and our society works tirelessly to make parenting a disabled child harder, something that often has little to do with the actual child.
Most of the time, when a parent of an Autistic child is saying “I am so fucking done,” what they mean is “I cannot fill out another insurance form” or “why can’t I find a school that will serve my kid?” or “I would just love to go on a plane without getting weird looks from other passengers.” Of course, these complaints are mostly, as Autistic advocates point out, not about Autism itself but about acceptance, and our difficulty meeting the access needs of Autistic individuals and their families.
This is not an Autism problem. This is a health care system problem, an education system problem, hell, even an aviation industry problem (they don’t need to make those lights so bright, or those announcements so annoying, or those waits so long—more airports could have a Sensory Room like SFO). But, also, the day-to-day experience of parenting a super-regulated kid who gets their needs met easily (again, not cause they are better than disabled kids, but because the narrow set of needs we’ve decided are worth meeting work well for them), is often different.
But I’m splitting hairs. The thing that the majority of Autistic individuals and parents of Autistic children agree on is, Autism is not a fucking disease.
Not so RFK, Jr., who promises not just to find a cause of and cure for Autism, something researchers have been attempting and failing at for decades, to the annoyance of many Autistic folks who don’t want to be eradicated but would love funding instead for making their lives better. Who needs a cure for a kind of person?? Bear with me for a minute (and if you are Autistic, be warned of the intensity of this exercise), and receive RFK’s word’s in a slightly different form, as if he is talking about real people who are listening, which of course, he is:
ROBERT F KENNEDY JR: This is part of an unrelenting upward trend. Overall, people like you are increasing in prevalence at an alarming rate. The epidemic is real.
You will never pay taxes. You’ll never hold a job. You’ll never play baseball. You’ll never write a poem. You’ll never go out on a date. Many of you will never use a toilet unassisted.
You destroy families, and more importantly, you destroy our greatest resource, which is our children.
Autistic people are people. They totally pay taxes (something many neurotypical people, including our president, do not!). They totally have jobs, all kinds of jobs! Also, what’s so bad about not having a job? Lots of neurotypical people don’t have jobs, many many more since the new administration took over!
I am sure lots of Autistic people play baseball! Though I’ve never played baseball, and my life turned out pretty good. They write poetry (just ask
and the amazing Sid Gosh, Hannah Emerson, or Imane Boukaila) and go on dates, though again, dating fails to make a lot of people happy. I’m not really interested in other people’s toileting, unlike the perverts who want to check kids’ genitalia before they go on the soccer field and whatnot, but I’m willing to bet many don’t need help and others who do (like the millions of Americans who need toileting help) would be doing better if the government paid for in-home care for them rather than spending funds turning up long-debunked theories about how they got to be who they are.
Please, do not try to convince me that you know what makes a good life, sir.
The interventions Kennedy proposes, like different diets, have long been fought by Autistic people as forms of abuse, erasure, and distraction from actual support (this brief “The Dirty Truth About Clean Eating” by the Autistic People of Color Fund is very eye-opening). I will never forget the Autistic child I supported in summer camp two decades ago who was made to drink a castor oil milkshake each day at lunch. I am sure he is still Autistic, and I hope he is better respected for it than he was then.
There have been some great responses to Kennedy’s words. If I were to pinpoint one “upward trend” in Autism, it would be that more Autistic voices are being heard. Bravo to that. Keep being unrelenting.
If you’re a parent of an autistic child looking for recognition but also trying to avoid pathologizing your kid, this guide, created by the Autistic Self-Advocacy Network, is free and amazing.
If you want to talk about Autism this month with the non-Autistic children in your lives — in classrooms, at the dinner table, in the car (where the best convos really do happen), here are some places to start:
“There are all kinds of minds and bodies and no one mind or body is better or worse, just different.”
“Just like a rainforest needs all kinds of plants and animals to help it grow, our world needs all kinds of people in it.”
“There are kids whose minds and bodies really work well in certain classrooms and with certain kinds of teaching, and others who do better with another teacher or classroom set-up. Like some kids find it too distracting to have 25 kids in their class, so a smaller class helps. Or some kids have a lot to communicate but need a helper to help them share their ideas.”
“If a person with a wheelchair tries to enter a building with steps, that’s a problem. But the problem is not the person in the wheelchair, it’s the building! The world disables people when it doesn’t make room for all kinds of minds and bodies.”
“Autism isn’t a bad thing, but it can be bad when the people around an Autistic person don’t understand them and support them. What is it like for you when you don’t get supported?”
Also, this:
If you want to explore ableism and the ways it hurts us all, I highly recommend Jessica Slice’s brilliant, readable, life-changing new book Unfit Parent: A Disabled Mother Challenges an Inaccessible World.
I had the privilege of publishing two interviews with Jessica this month, one in print at The Cut and one in audio format (different minds!) on my podcast, . Every conversation with Jessica is eye-opening, I hope you enjoy these.
I just watched Loop, the short film linked in this post — incredible! There are quite a few people in my life who identify as being on the autism spectrum. Learning more about how different people have different sensory experiences and needs has been so eye-opening, and it's helped me be a better friend, etc.
I love the idea of an Autism Read-In! Could you share more? As a parent of one (or possibly 2 -TBD) autistic kids, I would love for there to be more acceptance of neurodiversity at school. I want to write a library grant too!