So, I thought I was quoting Leonard Cohen with the line Life is not a victory march, but no, I am paraphrasing him. He wrote Love is not a victory march. That is true, too, but not the same thing at all.
I am turning 60 tomorrow. And I had a vision of how that would go a couple months ago, before I injured my foot again, apocalyptic smoke shrouded NYC and some other things I am not at liberty to discuss…I thought I would be writing about how I am in the best shape of my life! My memoir is going really well! Two years after being diagnosed autistic I now know how to frame it and the book will really work and I know how! The writing sabbatical was the best idea ever!
Etc.
Instead, I find myself unable to even walk very much, doing whatever cardio I can on a chair while huddled next to an air purifier in my fifth-floor walk-up that I had not left in a week until yesterday.
So…
Not really Instagram worthy, is it?
On the other hand, I discovered some things about a radical French dude in the 1960s making space for autistic kids who could not speak. Instead of trying to change them, he let them be. The precise opposite of what was happening here as the behaviorists used Applied Behavioral Analysis on autistic kids to make them appear more ‘normal’ aka less troublesome to the neurotypical world, using fun tools like cattle prods and electric shock. Turns out he (French dude, Deligny) was himself most likely autistic. No big surprise there.
Instead of medical staff, he had people walk with the kids and make drawings of where they walked, many of their paths would be along no longer used goat paths or unseen underground waterways. Allowed to follow their own instincts, the autistic kids were tuned into the world around them, way happier apparently seeing light reflecting on water than another person.
My first word was wawa and my first sentence was I wanna go beach. Please note the lack of other people in these phrases. And an obsession, a lifelong one, with water. Which is where I feel most at home. Always.
In other words, I stumbled on some of me while googling to see if Deleuze and Guattari—philosophers whose writing I had read and influenced my PhD and theater work—had ever worked with or considered autistic people…turns out Guattari had hosted Deligny for a couple years via his Le Borde clinic (which was also radical for its time)…
So…in not being able to do my victory lap in the last waning day of my 50s, I instead discovered an understory that leads back to Canada and Montreal and another philosopher who has been writing about all this for the past 8 years or so, Erin Manning. I reached out to her on Facebook, and she responded with great kindness. She invited me to a Zoom meeting two nights ago on ‘relational pacing’—a concept of Adam Wolfond’s—wherein we all used the same kind of text to voice technology Adam uses to communicate, to create more of a commons to include those who are autistic and cannot speak.
This experience was incredibly moving. I found myself alternating between feeling knee-jerk frustration at the slowness of the mode of communication—and my own inability to use it at first—to really listening to Adam, whose life involves this type of communication, which lead to hearing words in a whole new way. And as the time went on, we all realized we were hearing and understanding language, what Adam refers to as ‘languaging’ in a whole new way. The time and space between the words, which creates a new kind of resonance…not so much the ‘chunky’ perception of hearing language in the grammatical groupings we are accustomed to but taking them out of these constrictions so they could dance.
I remembered being a little hyperlexic child who had learned to read very early being plunked late into kindergarten and staring incredulously at kids struggling to read. I had no patience with them. I had already internalized ableism. I was so sure that my abilities were normal, though they were not, that I could not comprehend the slowness of the other kids’ reading.
55 years later, I am listening to the words one at a time being typed out by a fellow autistic human and delighted. And remembering with some shame my 5-year old self. But then remembering that I was considered ‘off’ in so many other things, so even by then I clung to my ability to be seen as ‘smart’—the cliché of the little professor who adults were enamored of and other kids kind of hate. But still…this performance of ‘smart’ which was a mask of course is why it took so long to understand I was autistic in the first place (not to mention being feloniously female…so not in the autism stereotype box).
But now by being UN-able to do certain things—and unable to participate in the Neurotypical ‘Independence’ Dance, wherein we all pretend to each other we are self-sufficient and any assistive technology indicates weakness or disability in the medical sense (as a problem) rather than the social sense (wherein the disability is created by the social’s lack of accomodations)—I am connected instead to a much more vital thread of autistic perception…then overwhelmed by the grief for how many years I was encouraged to ignore this greatest gift.
A few days ago, when I felt like I was being sucked into quicksand, I wrote in my journal and discovered afresh how much being autistic, especially undiagnosed autistic, led me to distrust myself. Not because I couldn’t—because I, like all the autistic people I have so far met have incredibly honed intuition that is usually if not always right—but because the messages I received, from the moment I was born, consciously or unconsciously from the allistic world was: you are wrong. Your reactions are wrong, your sensitivities make no sense, your senses are too much, and the way you feel and react is wrong. There is Something Wrong With You.
Which, as soon as I was able, I reacted to by performing performing performing…writing and making art and doing well in school, reading and writing very young…The only place I remember feeling less stressed was sitting next to theater directors in rehearsals, beginning when I was 7. Just watching them and absorbing everything I could…not just about theater, but also about life and human behavior and what body language meant what and what intonations implied what…it was a primer for masking, which worked until the wheels finally, mercifully, came off the cart a couple years ago.
This radical distrust of my intuition caused me to end up in relationships of various kinds, all of which were contingent on my thinking that person had access to reality that I did not.
It’s only now, hurtling towards 60, that I have even a shred of a chance of owning all of my own perception, autistic perception as Erin Manning and many other actually autistic people have defined it.
That which I hid for years because was afraid it would mean ridicule or ostracism, turns out is my greatest strength.
But what followed this level of Aha was/is…grief.
Almost crushing levels of grief…like a weight on your chest, why get up, because it’s all futile and what’s the point of anything level of grief. Do not mistake this for self-pity, because it is not that, most emphatically not that. But it is grief for a lost self. A Self in the sense of that which is connected to Everything but is also in your own body sense of self…that had felt like it had to hide out for most of my life…and for good reason. I was Not wrong. This is why it’s tragic grief. For any and all autistic people in the world, not just me, to be clear.
Living in a world that cannot bring itself to accept us as we are, even though aspects of who we are exist in everyone and I am certain everyone would be better off accepting and embracing autistic perception in themselves, not just us.
What do I mean by autistic perception?
Some examples include whatever part of you has affective empathy (feeling others’ feelings directly), premonitions, extra sensitivity to light, smell, sound, taste, whatever, deep intuitions leading to inexplicable leaps of faith, connection with something larger than yourself, could be the ocean or a tree or a sense of the divine or sacred…the part that does not organize everything as soon as you perceive it, that is open to All that you see, hear, feel, touch, taste, smell, sense before you can organize it into something categorizable… that part that is not afraid to leap where there is not a net because you know in your bones: There Is No Net Ever….
That…
So, I am not marching victorious into 60, no. I am literally limping into it with an ankle brace, but I am also breathing inside my own skin comfortably for the first time ever, even when that means embracing grief and deep sorrow, sometimes rage and sometimes profound joy, seeing colors in the sky or water that make me cry with happiness, or maybe a simple ray of light that turns into a rainbow in the shower or the eagle that landed on my air conditioner one day after I had taken one of the leaps of faith, saying to someone I will not mask anymore for you. I am sorry you cannot handle who I am now, but this is me. And then I felt so exposed and lonely and like maybe I should back pedal, though I knew I would not and then the rainbow in the shower and then the bald eagle staring at me as if to say: Yes, you did the right thing and you are here now in your own power.
Time to take flight.
But also, as the years have gone on since that initial discovery, I recognize all the ways I am still affected, like yesterday walking on the street, realizing I am generally at a low-level panic at all times, especially if in public. I am looking at flowers but aware I can barely see them because some part of me is bracing for something. Perhaps a history of being seen as off somehow since infancy when I would not let anyone touch me, my mother having to nurse me using a pillow? I don’t know, but it makes simply ‘being’ quite challenging.
I am here for it now, though. All of it. Even in the discomfort, I am at ease. It’s a paradox, but I’ll take it. In accepting it all, I don’t have to run or fix or fight or freeze or fawn.
Instead, I just breathe, relax, feel, watch, allow.
That is the first tool I learned from Kripalu yoga over 20 years ago, which is why it’s no accident I began the journey to discovering I was autistic soon after an intensive teacher training at Kripalu in June 2019.
Life is not a victory march. It’s an unveiling. One breath at a time.