Autism, Love, and Taxes: My Neurodivergent Response to RFK Jr.
Neurodivergent people aren't broken, but the culture's developmental delay is showing.
In my early 40s, a close friend suggested that I might be on the autism spectrum. I wasn’t so sure. I’m truly terrible at math and science, and I have no interest in model trains or airplanes. It’s true that I’ve often struggled with friendships, but I chalked that up to living in so many different places during my life.
Back then—2008—virtually nothing was known about autism in women, so it was assumed that fewer women were autistic. I read articles, did lots of research, took test after test after test and went down rabbit holes, all of which seemed to confirm autism—and in hindsight, the intense focus I had on autism as ‘special interest’ was a pretty major clue. ADHD had been easy for me to identify; seeing autism in myself took much more self-awareness and an ability to see beyond pathologizing language to the experience to which that language pointed.
Once I had been assessed, at age 55, I could see the clues more clearly: I had been a classic ‘horse girl’, obsessed not only with riding, but with memorizing everything about horses (and reciting those facts ad nauseum to anyone within earshot). I was hyperlexic, reading early and material far more advanced than my age. By the time I was 10, I had already read Erich Fromm’s Games People Play, and my favourite book was The Short Stories of Ernest Hemingway.
Once I knew I was on the spectrum, my childhood made much more sense. I hadn’t been bad or thoughtless; I’d just been completely different than the adults in my culture expected.
I could go on and on, but this post—believe it or not—isn’t about me.
The single best response to RFK, Jr.
I feel shame in confessing that my first response to RFK Jr’s utterly oblivious and uninformed talk yesterday was to think, “Wait, I experience love. God knows, I’ve paid taxes. I’ve written poems.” I mean, I’ve literally been a professional creative for nearly 40 years. While my response was understandable, it was not particularly skillful.
Chris Wenger (aka SpeechDude) is a speech-language therapist (SLP) for high-school students and a passionate neurodiversity advocate; he understands neurodiversity implicitly because he’s got an ADHD brain and a playful sense of humor—which helps him keep viewers’ attentions on social media. As “influencers” go, we could use more like him (and his wife, Jessie, also an SLP).
Yesterday, after RFK Jr’s talk, Wenger was all business. This video is one to watch and save and share (just please come back to this newsletter—there’s more below). His caption read: “You don’t calculate a human’s worth in bathroom skills or W-2s. You measure it in humanity. In joy, in presence, in love…❤️”
Mic drop.
My initial response had revealed my own internalized ableism, and I felt shame for that. Back in 2012, when I was in the peak of my ‘forest years,’ I was saying exactly the same thing and being a better advocate for people who communicate differently. Somewhere in the return, I began viewing the world through my own narrow lens again.
Thankfully, ‘functioning’ labels have largely been discarded—at least, in my world—in favour of ‘support needs’. For example, I’m self-employed as an accommodation; I can’t work in an office (I can either do the work or manage the sensory and energetic input). But people who don’t or can’t speak are every bit as worthy of love, kindness and a rich life. Productivity is not a moral imperative.
As I write often, language is a series of spoken grunts and written symbols. If there were any absolute truth to language, we wouldn’t need 7,000 unique ones on our one tiny planet.
Language also prevents a direct experience of the world we live in. Once we label something, we lose the ability to see it as it really is. We fill in details from our past experience with similar objects, beings or states, and we close ourselves off to the mystery of being an expression of nature on this planet.
RFK Jr. would say I have ‘developmental disorders.’ Yet one of the most famous spiritual teachers in history said, “You must become as little children to enter the kingdom of heaven.” And that was the whole point of my ‘forest years’—that experience (not a location) is available right here, right now, not some far-off time, because time doesn’t really exist. I’ll take direct experience of oneness over fitting in, any day.
In 2007, the late autism advocate Mel Baggs (then known as Amanda) shared a video that captured their experience as a non-speaking autistic person. This video blew open my mind to the rich lived experiences of those that the culture would consider multiply challenged. Even more than the video below, their blog captured their experience of the world, of their body, of how they were treated.
Even if someone doesn’t use language, has multiple medical issues, needs help with the tasks of daily living throughout their life, that doesn’t make them any less valuable or worthy of love.
Value is not defined by an individual’s ability to make money for billionaires, and verbal ability does not reflect intelligence. Value, worth and genetic status are flawed human constructs, not absolute reality.
In a 2016 essay, “Love Letter to an Island”, I wrote: “Oaks don’t judge arbutus [trees] for not producing acorns (at least, I don’t think they do). There are dozens, probably hundreds of types of moss that live here, too, and fungi of unimaginable beauty. It’s all part of the ecosystem and, as Eckhart Tolle points out, what the mind perceives as chaos is actually a perfect order.” How can we accept that’s true in non-human expressions of nature, yet not in human animals?
Natural variations in human expression and experience
In 2012, I read about an artist named Angelica Dass, who had begun an art project called “Humanae.” The project takes people of all shades and matches their skin tone to a Pantone colour code, to show the vast range of skin tones. Looking at her images, it’s clear that the distinction between ‘white’, ‘black’ and ‘brown’ is completely arbitrary.
(Pantone is a color-matching system used by designers to ensure consistency across different media.)
This project was, and remains, my favourite visual representation of the biodiversity of humans. Skin tones evolved in response to the amount of sunlight each person’s ancestors were exposed to—another sign of nature’s wisdom.
If we understand this incredible variation in skin tones among humans, why would we expect brains to be any less diverse? Or body size and shape? Or sex hormones? And whose business is it anyway, aside from ours?
We are a process, not a fixed object
Most of us look in the mirror and think “that’s me,” that our bodies are the entire encapsulation of our being. It’s ironic that people who call themselves Christians are attacking diversity, when Jesus’ teachings were about pointing people towards their eternal nature as expressions of one life force. That is the core of all major religions, but as I’ve written before, the messages have become monstrously distorted, like a two-millennia game of Telephone.
Many neurodivergent people know that we are not static beings, because many of us experience it. Many people on the spectrum identify with the part of ourselves that isn’t embodied—the consciousness that gives rise to and witnesses our incarnation, rather than the human constructs neurotypicals use to understand and organize life on this planet.
The dominant culture is designed for one neurotype, one that—like views of race and gender—is becoming outdated. No wonder so many of us seem “disabled.” Our needs are not met by the current culture.
Neurodivergence and gender
Up to 70% of people on the autism spectrum identify as neither heterosexual nor cisgender. Which makes sense—many of us know implicitly what Scientific American reported in 2018: There are virtually infinite combinations of XX and XY chromosomes throughout a human body. The idea of a body with “pure” XX or XY chromosomes is a ridiculously outdated myth, along the lines of offering “lunchtime lobotomies” to treat depression (which was done as recently as the 1960s).
We often fall into a cognitive distortion in which we believe that what we know now is what we will ever know…or what science will ever know, or that science won’t be outdone by some even greater form of knowing. We think we know so much, but we don’t know anything, really. That includes why people are born the way they’re born, or the experience of someone who doesn’t speak and doesn’t seem ‘intelligent’ by our contemporary standards. As Mel/Amanda shared in that video above, we might assume that someone has no quality of life when, in fact, theirs might be much more profound and intense than ours.
Please know I’m not trying to diminish the challenging experience that some parents and caretakers experience. Nor am I saying that everyone on the spectrum has similar views or experiences. As the saying goes, “if you’ve met one person with autism, you’ve met ONE person with autism.”
Preferred language varies, too. I prefer “autistic” because my ability to receive insights, as well as to what others are repressing or dissociated from—those are gifts that come at the expense of some executive functions and the willingness to perform social niceties. Others might prefer “with autism” (to me, that’s kind of like saying “with left-handedness”) or “on the spectrum.”
All distinctions (and social expectations) are arbitrary
Everything I’ve been talking about here—neurodiversity, race, gender and more—are human constructs, labels we use to organize and sort, and no label is absolutely true. Human beings, like all expressions of nature, aren’t meant to be sorted and categorized. Until this point in our evolution (and probably for quite a bit yet to come), humans use language to try to sort and categorize a variety of experiences of being human. When it comes to autism (and many other types of experiences that diverge from the dominant culture), these labels aren’t for the benefit of the individual, but for the NT person interacting with them.
In addition, no individual is one thing. Someone I might find deeply aversive may also be married to someone who thinks they’re the kindest person in the world. Someone might be an amazingly talented artist and, at the same time, not particularly friendly. Or they might be deeply insightful yet challenging to be around. As the famous Anaïs Nin quote says, “We don't see things as they are, we see them as we are.” Which is a topic for a whole other newsletter.
“You don’t calculate a human’s worth in bathroom skills or W-2s. You measure it in humanity. In joy, in presence, in love…❤️”
—Chris Wenger, SLP, aka SpeechDude
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You make so many elegant points in your beautiful essay. Thanks for posting this. I plan to share with many I know you could benefit from reading it.
RFKjr's comments are so infuriating and vile. Thank you for sharing Chris and Amanda/Mel with your readers.