This Is Autism

November 18, 2013

On November 11, an extremist anti-Autistic hate group with the ironic name “Autism Speaks” – a well-funded organization with a history of promoting the stigmatization, silencing, disenfranchisement, abuse, murder, and eugenic extermination of people like myself – released a “call for action” authored by one of its founders. 

Like much of the previous anti-Autistic hate speech produced by Autism Speaks, this “call for action” characterized the very existence of Autistic children as a “monumental health crisis” and a “national emergency,” and as a terrible, life-destroying tragedy visited upon the families of these children. As is usual in the rhetoric of Autism Speaks, the existence of millions of Autistic adults was not mentioned at all; acknowledging our existence would make it hard for them to keep selling the lie that autism is a growing “epidemic” (rather than a manifestation of human biodiversity that serves an evolutionary purpose and that has most likely been present in the species since our hunter-gatherer origins).

Written in the tone of over-the-top alarmism that has been characteristic of Autism Speaks since the group’s inception, this hand-wringing “call for action” featured melodramatic descriptions of the daily horrors allegedly faced by parents of Autistic children. Three times, in the course of this list of horrors, the author repeats the sentence, “This is autism,” in bold lettering for extra dramatic effect.

In response, Autistic blogger Cynthia Kim created the This Is Autism Flash BlogA flash blog, for those unfamiliar with the concept, is when a whole bunch of people blog on a single topic, and all of their blog posts are published on the same day. This post is my contribution to the This Is Autism Flash Blog. I’m one of a great many contributors standing up to the lies, hatred, and fear-mongering rhetoric of Autism Speaks today. You can read everyone else’s contributions by visiting the This Is Autism Flash Blog site.

This piece has been reprinted in the book The Real Experts: Readings for Parents of Autistic Children, published in 2015 by Autonomous Press. For purposes of citing this piece in academic work, it’s generally best to cite the printed version.

A Russian translation of this piece is available at
https://neurodiversityinrussia.com/2016/12/02/ник-уолкер-это-аутизм/


THIS IS AUTISM

Old Cutter John comes to town, leaving Las Vegas before dawn and driving across desert and mountains to Berkeley nonstop, no sleep, fueled by coffee and chocolate and a whole lot of CDs full of music to play over and over again with the volume on the stereo of the rental car turned up to eleven.

The CDs are mix CDs he made, and mix CDs I made for him. For a few years we shared an obsession with making these mix CD and sharing them with one another and with friends. Each CD is a collection of songs we like, united by a particular theme, or a complex set of interrelated themes. They are musical stories or treatises; soundtracks to unmade movies about whatever aspects of life we were contemplating at the time. The themes are not simple, it’s not like, “This one is a collection of my favorite love songs, and this one is a dance mix for parties.” Titles of our various mix CDs include The Mark of Cain, 100 Years of Solitude, Where They Never Have Troubles, and The Logistic Difference Equation.

Like me, Old Cutter John is an Autistic activist. He’s also my father. I recently discovered that many people in the Autistic activism community – including people who have been friends with both Old Cutter John and I for years – were unaware that he was my father. We’ve never tried to conceal the fact from anyone. It just never occurs to us to mention it if no one asks.

Once Old Cutter John mentioned to someone that he’s known me for decades. The person asked where Old Cutter John and I had first met.

Old Cutter John replied, “In a hospital.”

This is autism.

It’s a bright cool Sunday in Berkeley, and when I step into my aikido dojo the sun is singing through the skylights, suffusing the big airy space and making shiny hot pools of white on the rich vibrant blue of the mat. That vibrant expanse of blue makes a low soft thrumming and gives me a feeling of warm wide open spaces behind me and in the lower part of my lungs. The sunlight sounds like a choir of angels, and together with the pleasantly humming mint-flavored whiteness of walls it makes my skin tingle and opens a luminous sky in my chest and all around my head. I inhale into that space and the cool air fills my head with exhilrating white-blue and brings new, higher harmonies into the choir.

There’s a moment of silence waiting for me at the top of the inhale, and just as I reach it I realize that another sound is happening, too, a grey-brown sound that rolls and tumbles like an otter in the blue-white river of sensation. This sound is incongruous and merits investigation, so as I begin to breathe out I do that trick that I learned to do when I was a real tiny kid, the trick that no one ever talked about and that I could never explain to anyone because, as I eventually learned long after I grew up, for most people it’s not a trick that they have to do, it’s just the way they are all the time. The trick where I filter and sort and separate the currents of the river until they resolve themselves into a world of discrete objects with names and meanings.

Dojo, walls, blue mat on blonde wood floor. Seven of my aikido students in white gi, early arrivals for class, on the mat, stretching. The choir is still singing blue-white, the walls still have that minty tingle. Interpreting some of the currents and eddies of the river as discrete objects with names doesn’t make the river stop. The flow is always happening. The world of discrete objects and names is a part of the river, too, and it’s the part where most other people live by default. Me, I’m just visiting.

Once I’ve made the necessary shift in consciousness, it becomes clear to me that the grey-brown tumbling otter sound that got my attention was someone talking to me. A greeting, I think, from one of the students on the mat. Yes, he’s looking at me.

Quick mental checklist, made quicker by the fact that I don’t think in words and thus don’t have to go through it in a linear fashion. If it were a literal checklist, though, written out in words, it would go something like this:

Does his greeting call for a response on my part? Yes, definitely.

Is he smiling? Yes.

Should I smile back? Yes.

Do I already happen to be smiling? Yes. How convenient!

Does this exchange of greetings also require speech on my part? Most likely.

Have I now taken so long to respond that there may be some potential social awkwardness to navigate? Probably not. In terms of clock time it’s only been a few seconds. A slightly longer pause than is usual for the ordinary rhythms of social conversation, but my students are quite accustomed to my pauses by now.

“Good Morning,” I say, smiling.

I bow, because I’m entering the dojo, and one bows when one enters the dojo.

It’s past noon by the clock, but I say Good Morning because I always say Good Morning. Yet another quirk to which my students are well accustomed.

I like to remember that it’s always morning somewhere.

This is autism.

Julia and Zoe come to town. We meet on the porch of a Thai restaurant near my apartment in North Berkeley. Julia is taller than I expected. It is my intention to have Thai food for lunch, but Julia has not experienced Thai food and is reluctant to do so at this time.

There was a long period in my adolescence and young adulthood when I would have regarded Julia’s reluctance to eat Thai food as something that I should help her to overcome, by badgering her in the manner that I learned as a child from Sam I Am in Dr. Seuss’ Green Eggs and Ham. “Would you eat them in a box? Would you eat them with a fox?”

Now, though, my years of immersion in the emergent Autistic culture have deeply inculcated in me a rule that I think of as the Golden Rule of Neurodiversity: Respect the bodily, sensory, and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs. 

So I suggest an establishment across the street, that serves good cuisine of a more Euro-American variety. A place where Julia and Zoe can have pancakes with whipped cream for lunch, while I can have a large salad with grilled chicken and some sort of spicy ginger dressing that satisfies my own sensory preferences. The noise and bad acoustics inside this establishment are unpleasant for all three of us, so we elect to sit at a table out on the sidewalk. Julia has found a small purplish flower somewhere, and she twirls, twirls, twirls it between her thumb and forefinger while we wait for our food. We all watch the flower, watch it spin, spin, spin.

This is autism.

Kassiane comes to town. We lunch on delicious Thai food, on the porch of a Thai restaurant near my apartment in North Berkeley.

I’ve been reading Kassiane’s activist writings online for more than a dozen years. Her writing is fiery and powerful, the writing of someone who has learned well and truly that the consequences of standing up and pushing back hard against the forces of oppression are never as bad as the consequences of not pushing back. I know a lot of people who are scared of her. I regard her as a hero.

In person, Kassiane is smaller that I expected, and she has a white cat named Purkinje who rides on her shoulder. She looks ten years younger than her age, and her voice is soft and light, easy on the ears. She loves the color purple. I’ve seen photos of her with purple hair, but today it’s brown. She might or might not be wearing purple. I can’t tell. It doesn’t matter. Because everything she does is a beautiful bright purple. My brain processes her voice as purple, her movements as purple. She’s warm and friendly, and when she hugs me, she means it, and I feel like I’ve been enveloped by a purple glow.

This is autism.

When my daughter was born, I suspected from very early on that she wasn’t Autistic. I didn’t mourn, not even for a moment, that my daughter’s neurocognitive orientation was different from my own.

When non-Autistic parents have Autistic kids, this is what I wish for them: I wish that they would accept their Autistic kids as Autistic, and instead of trying to raise them to be like non-Autistic kids, raise them as Autistics and help them to grow into the best Autistic human beings they can be.

So when I had a non-Autistic kid, I decided to practice the Golden Rule, accept her as non-Autistic, and raise her to be the best non-Autistic human being she could be.

Non-Autistics do all this fascinating complex social stuff – but how do they learn to do it? I immersed myself in the study of developmental psychology, and set about making myself an expert on non-Autistic childhood development. How much eye contact do non-Autistic kids need? What’s the best way to help them develop spoken language and non-verbal communication skills? What do they need in order to feel safe and socially confident?

When we’re immersed in projects that are meaningful to us, there’s no folks as thorough as us Autistic folks. I did such a thorough job of helping my daughter achieve her developmental potential as a non-Autistic kid that she ended up with social and communication skills that were advanced far beyond the usual norms for non-Autistic children her age – and with social confidence to match. Now I have to figure out how to deal with having a child who can charm most people into giving her anything she wants.

This is autism.

Lydia and Shain come to town. Lydia is speaking at UC Berkeley, and they’re staying in a hotel near campus. We make plans to meet for dinner in the evening, after they return from a day across the Bay in San Francisco.

They’re headed back into Berkeley on the BART train – the local commuter rail system – and I’m walking to meet them. All through the walk, I’m getting rapid-fire text messages from Lydia, with updates on their progress, questions, refinements in the evening’s plan. Can I meet them at the BART station instead of at the restaurant? Sure. Is there room in my car for them? I don’t have a car and I couldn’t drive one if I had it, but I can meet them on foot and walk with them to the restaurant via the shortcut through UC Berkeley campus that I’d been planning to take.

I am a great admirer of both Lydia and Shain. They are two of the most important Autistic activist voices of their generation. I’m in awe of Lydia’s writing – not just its quality and its importance to Autistic activism, but also how prolific she is.

This conversation via text, while I’m walking to meet them, is a reminder of Lydia’s prolific writing output: she is apparently capable of texting faster than I can usually talk.

When they arrive, I discover that in conversation, Lydia talks like she texts. Not just the sheer speed of it, but also the style. She uses abbreviations in speech that I’m used to only seeing in text messages or Facebook status updates: OMG, FML. I quickly discover that the only way I can process her speech is by picturing her statements typed out in my head as text messages.

Throughout the evening, interspersed with her conversation with me, Lydia initiates brief, spontaneous side conversations with Shain, in which she shares thoughts that have suddenly occurred to her, concerning characters in her unpublished novels or characters in roleplaying games – thoughts that Shain has the necessary background information to appreciate, while I don’t. It occurs to me that outside of Autistic culture, some people might find this rude. I don’t find it rude at all. I find them both to be charming company, and these side conversations strike me as delightful glimpses of the intimate connections these two share, sort of a verbal equivalent of the affectionate, aikido-infused physical play in which my wife and I so frequently engage in public.

First order of business, before we can head across campus to the restaurant, is to find a bathroom. It’s a busy warm night in Downtown Berkeley, and the sidewalks of the main streets are bustling with people.

Me, I love the sensory experience of navigating a busy nighttime sidewalk: all those different bodies moving in their own ways, with their own paces, rhythms, and trajectories. Finding the spaces between them is a dance much like the dance of aikido.

But just as I’m about to lead my guests into a particularly busy stretch of sidewalk, I remember the Golden Rule of Neurodiversity: Respect the bodily, sensory, and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs. And I remember that the pleasure I find in this particular form of sensory stimulation is a relative rarity among Autistics. So I quickly ask them whether they prefer crowded sidewalks or quiet ones, and Lydia tells me they’d prefer quiet, and I do a swift detour down the nearest quieter street.

We have delicious Ethiopian food for dinner. I walk them back to their hotel, which does involve crowded sidewalks: the boisterous stretch of Telegraph Avenue near campus, which on warm nights like this is teeming with drunken students, local youth, and homeless folks of all ages. A lot of the homeless folks who hang out on Telegraph Avenue have dogs, and Lydia and Shain stop to make friends with every single dog we pass.

This is autism.

Riki comes to town. She knows the species, traits, and potential uses of every plant in the neighborhood. She smells of patchouli and walks with a cane, and my daughter loves her.

Riki spends hours fixing my out-of-commission electric scooter, taking it apart and putting it back together. It seems to me that she’s doing me a great favor working on my scooter, but from Riki’s perspective, I’m doing her a favor because she’s never had the opportunity to take this sort of scooter apart before. The whole time she works on the scooter, she talks to it like she’s a friendly veterinarian talking to an animal. She refuses to take a break to eat.

Afterward, I take her out for Thai food.

This is autism.

The youngest and most enthusiastic student in my aikido dojo, the girl is five years old and so small that even the smallest size of gi is adorably large on her.

She loves aikido. Like me, when I started my own aikido training at the age of twelve, she has a hard time learning the moves, but she keeps on working at it because she gets what the art is about, she appreciates its sublime beauty in a way that most people, so far as I can tell, don’t arrive at until they’ve been training for ten or twenty or thirty years.

That’s my secret, really. The secret to how I got to be a sixth degree black belt in aikido, and the chief instructor of a thriving aikido dojo. Most people assume that I had some sort of natural physical talent for it, but nothing could be further from the truth. The secret was that the beauty of the art touched me, that I could see from the beginning that its dance contained all the sublime subtle grace that I saw and loved in the flight of birds and the movement of the ocean’s waves. And even though I had no talent for the art at all, I wanted so much to feel what it was like to embody that grace, that I was willing to put in as much work as I had to in order to get there.

More than three decades later, I’m still at it; I’ve gotten far enough now that I’ve had some first tastes of that grace, now and then in recent years, and it’s just served to whet my appetite.

This little girl can see the beauty, too. And today, before class starts, she can barely wait to talk to me. But she still remembers to stop and bow when she enters the dojo. The Autistic kids always remember.

After her bow, she comes bounding across the mat to me.

“Hello, Sensei,” she says.

“Good Morning,” I say.

“Today is a special class!” She informs me, looking somewhere past my left shoulder. “Today is my fifty-third aikido class!”

“Ah,” I say. I think for just a moment, then it comes to me. “That’s a prime, isn’t it?”

“Yes!” she laughs, and bounds away across the blue mat, hands flapping.

 

 

NeuroFly

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