I am Working to be More Autistic, Not Less

I always pushed my most autistic (and least socially acceptable) parts to the edges of my consciousness, to those shadowy corners of “self” where we humans abandon ourselves. Like a little child playing peekaboo, I believed that if I did not look at those parts, they would disappear. It turns out that they didn’t. They sat, lonely, shamed, and in pain, popping up when I least expected it.

I would be smoothly managing a social interaction, only to get a question I wasn’t expecting, hadn’t practiced for, couldn’t manage. And I would be unable to speak, totally stuck. Crumbling with shame and embarrassment, I would force out words that didn’t make sense. I would laugh over these social foibles with my husband later, both of us wondering why I did these things, why it seemed so hard for me. Or sometimes I could not even do that and would abandon the conversation mid stride. I would turn on my heel and flee to the bathroom, where hot tears would slide down my face. As my cheeks flamed and my heart raced, I would commit to learning my lines even better next time. Never again, never again, I would promise myself.

At home, my tendencies to drop speech became a strange blockage in my marriage. My husband would ask me a simple question and I would never respond. “We’ve got some things we need from the store, are you making a grocery order?” He would wait for my answer patiently, until he eventually asked again, which led to my melting down, or gave up and walked away. Inside my head, the words would swirl, so many words. But the ability to talk was gone. There was no way to push it out. Not knowing what to say or how to bring them forward, I would shut down too. I was lost in the silence, caught inside myself. 

ECHOLALIA

Echolalia is a pattern of repeated speech, where the autistic person repeats phrases they’ve just heard in conversation or heard elsewhere. My echolalia takes the form of repeating my own words over and over inside my head, an eternal echo bouncing around, until it finally quiets. Once texting and email took over as my dominant form of social communication, I began reading my own words, over and over. I have a feeling that everyone does it to some degree. It is the uncontrollable drive, the length and the intensity that sets it apart for the autist. I would read and re-read hundreds of times, unable to move forward with my day, returning to them like a dog licking a wound that renders it unable to heal. This pattern took on an obsessive quality too, a fixation on these words, as though I could not stop picking apart my own speech, all of it coated with a thick layer of shame. I shouldn’t be doing this. There is something wrong with me.

STIMMING

Stims are those repetitive body motions that autists need for regulation. Flapping, jumping, and rocking are common ones. As I suppressed my need to stim, these needs took on crueler forms, eventually leading me to bite my lips and cheeks until they bleed, the taste of blood filling my mouth and the momentary shame that this habit was out of my control, that it filled a need I didn’t understand. Why do I do this? I would demand, without genuine, gentle curiosity to discover the answers. Those answers sat in the shadows, shrouded in shame.

OBSESSIONS

I hid my passions too, those things that grabbed hold of my brain and filled me with total and complete joy. The special interests that are a hallmark of autistic existence. Most of my passions were socially acceptable for an adult woman, but some were not. I became obsessed with a children’s tv show about gymnastics, relieving my own childhood passion for the sport in this made-for-tv drama. I watched for hours a day, telling no one about this source of intense joy. I hid it like a dirty secret, convinced that no one would understand just how much I loved it, how much I needed it, how it filled a piece of me that would be empty otherwise. I do not talk about how much I love the movie Frozen II, how it inspires me on a level that no symphony or self-help book ever has. How listening to the music brings me to tears and how I watch and re-watch scenes from the movie almost daily, an anchor to connection with a cast of characters who have become the best of friends.

AUTISTIC DREAMS

A few days ago I met with a fellow autistic homeschooling mother at a park, both of us remarking that this was our first time to meet with our neurotype and role in life in the flesh. No one would have noticed from our interactions that we were different, that our neurotype represents a tiny percentage in the wider world of humanity. But our eyes sparkled and our stories flowed with an undercurrent of “me too,” as we explored this new terrain, this autistic sense of self. I told her that I dream that in ten years I will look much more autistic than I do now. 

I now gently probe these stories of my autistic traits and these needs they represent. I gather them close and surround them with acceptance and love—and apologies too for the years I shrouded them in darkness and shame. I didn’t know better, but in my ignorance, I did real harm. I have amends to make with myself. 

I look at the society that shaped these interactions with myself, at the intolerance for difference and shame-based scrutiny that I absorbed, that I swam in like fish in water. 

MY NEIGHBORS ARE MY TEACHERS

I wonder about what a fully whole, fully integrated, shame-proof autistic me might look like. I look to my neighbors for examples of what they can teach me about how to live well in this world. 

I feel so grateful to live in a community that centers difference and radically accepts all the ways that humans can exist in our world. I am surrounded by wise teachers, and I am a stumbling babe by comparison. I am a toddler learning to walk. My autistic neighbors show up and stim without contorting themselves to hide their body’s needs. My autistic friends repeat phrases over and over, or use no words, their grunts and sounds and waving speaking volumes for them. At our neighborhood picnics, I see friends who sit alone and rock, simply glad to be near and to be included, not needing to chit-chat and swirl the party, talking for the right amount of time to each person. And I see others who move through the party asking the same question to each person, comforted in the familiarity of the discussion of birthdays or holidays to ease the complexity of social interactions. 

I am inspired everywhere I look.

For now, I am working inside myself, to bring these shamed parts into the center of my own being because I now believe they exist to treasure and love. I thoroughly celebrate when I have the courage to bring them out. Now I share in a conversation that sometimes I have trouble answering questions, or I consciously steer the conversation toward my special interests. I practice not worrying if I’ve talked too long or been too enthusiastic, instead trusting that my real self is sacred and to be treasured. All of these supports lessen the anxiety surrounding my echolalia, and now as I re-read my words, I am proud that I am speaking with an authentic voice.