You don’t know how freeing it is to write that. Every single time I do, I feel like a little more of that burden I’ve been carrying for decades is being lifted off my shoulders. I’m one of those cases (as happens to many autistic cisgender women) where I only discovered this last year at age 49. Yup, I went my whole life knowing that my brain operated in its own way; not much at all like my friends or teachers at school, nor my work colleagues as an adult. I had a unique way of perceiving my surroundings and often wondered why people didn’t get where I was coming from.
I was on the fringes in school—the misunderstood musician. I was loud and passionate (yay for being extroverted and neurodiverse), but I didn’t understand many social constructs. If social rules made no sense to me, I dismissed them. And I’m talking about ridiculous made-up things that cause the exclusion of others. I also rebelled on a religious level at age 15. (I am not really into the adulation of “human heroes”—I don’t care how famous they are. So, I never went to see the Pope in Montreal in the mid-80s. My Catholic parents were shocked, but they didn’t stop me.)
Sensory overload and the need to withdraw into quiet spaces has probably always been there with me. With the invention of the Sony Walkman™ back in the day, I found solace in listening to music, so I could focus on a singular, comforting sound. Even today, I rarely go outside without my headphones on. However, I’ve not worn them at crowded events. The onslaught of noise from cons, for example, can make me feel like someone is beating up my brain from the inside. Last year, I had to flee, in what felt like desperation, to a place of solitude in a less populated part of a hotel at a writers’ convention. I was shaking from The Overwhelm. It never occurred to me that I needed to upgrade to noise-cancelling headphones as an aid in sensory crises.
This type of overload, accompanied by the brain fog associated with fibromyalgia, takes over my ability to concentrate and hear. I cannot pick out human voices very well. One time on a writers’ panel, my friend had stated their pronoun was they, and when I immediately forgot (I’m like Dory the fish), they tried whispering it to me, and I couldn’t hear it until my other friend to the right cried: “They!” How embarrassing. I have now learned the ASL for the word, by the way. And at home, the Closed Captions are always on. Human voices have been a challenge for me, again, for decades.
Most of my life I’ve pretended to hear words when I could not. Most of my life I’ve tried to blend in to the constructs around me when I figured it might be easier that way, but I could not mask that long, and my true self always came back. Sometimes I’d completely burn out from just “trying all the time.” I also cannot often accept the status quo and/or injustices. A Québecois expression roughly translated is: I don’t keep my tongue in my pocket. (Thanks to my friend Nate for that one.) It’s really difficult for me to say nothing while myself or others are being excluded, and these days my passions are focused on accessibility and the inclusion of all the humans who identify with the Disabled/Deaf/Neurodiverse/Spoonie/Mad culture.
If you meet me in person, there might be a good chance my words might seem disjointed, or I have a difficult time collecting them. My brain is constantly processing the load of chronic pain stimuli, as well as trying to navigate speech through whatever is going on with my neurodiversity on that particular day. I’m just saying this as a fact—not to incur sympathy. I do not feel sorry for myself in the least. I know I’m intelligent and that my voice matters, regardless of whether my brain is fully braining or out of spoons.
There are people who might not want our voices heard, or they want them curtailed to fit into neurotypical boxes or even into ableist perceptions of how we should be. Don’t subscribe to that. My internalized ableism has held me back for so long. It was responsible for me waiting years to get a mobility device, and it kept me masking my neurodiversity.
You can’t really fake things. Faking puts such a strain on a person and you’re basically living a lie. I totally get sometimes we mask for survival, so I won’t judge anyone who still feels they need to mask. I’ve been in that place, too. Be safe, by all means.
But if you feel you can, do connect with other autistic and neurodiverse people. There are so many on Twitter, for example. And for the most part, they are extremely supportive.
It feels good to remove the mask.
And these days, instead of faking it, I’ll say a phrase my BFF uses a lot: “My brain isn’t braining today.” That expression really works for me. Perhaps you have one that suits you even better.
Cait Gordon is a disability advocate and the author of Life in the ’Cosm and The Stealth Lovers (September 2019). When she’s not writing, Cait’s editing manuscripts and running The Spoonie Authors Network, a blog whose contributors manage disabilities and/or chronic conditions. She’s also teamed up with co-editor Talia C. Johnson on the Nothing Without Us anthology (September 2019.)