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When I Realized I'd Been Hiding My Autism for 32 Years

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It’s immensely hard to wake up one day and realize you’ve been playing a part — wearing a mask your whole life.

I don’t mean a literal waking up, as in waking up in the afternoon as I do, and then noticing, again, that I can’t sleep a full night and haven’t since I was a kid. That I can’t go to bed before the wee hours of the morning. I mean the “Aha!” moment-that-rocks-your-world waking up. The kind of moment I felt when I realized I was transgender. And that was very much solidified after I had top surgery — a double mastectomy — in July of 2020. I couldn’t stop smiling and I felt complete.

Something else felt wrong. Even though I’d finally accepted my gender identity back in 2015 and transitioned as fully as I needed to, there was still something under the surface. Things relating to stuff I joked about for years — even with friends. Things that felt so far out of reach because I kept them that way. I was ashamed of a lot of things I did in private, sometimes because of the fact that they were common poking points when I was bullied. Some things were habits I had to learn to not do, especially in public, because they were embarrassing to the person I was with or people would stare at me.

Having an anxiety disorder from birth did not make it any easier to be myself. But as a child, I remember being bossed around easily. Even if my friends “hurt,” so to speak, I did what they told me. I let bullies beat me up, kick my head in while buried in the snow, and I would often end up playing by myself or with kids who were incredibly cruel to me at times. Sometimes, I’d have one person who I didn’t speak to often, or even after the particular day, who I’d spend alone time with.

I remember a few peaceful moments as a kid on the playground, though. One, in particular, involved a girl I don’t remember. We were at peace wandering along the fenced-off barrier of the school grounds, and we sat to pick flowers and dig up clay far from others. While the other kids played pretend and chased each other, or went down slides and chatted in groups, I was happy picking at grass and being convinced that the little white flowers bees fed from were also nutritious to humans.

I remember one constant friend who was developmentally disabled. I got along with that friend best, and we never played in a group but among ourselves.

During this time, I would sometimes have to wear pull-ups to school, or big kid diapers. I had to wear them to bed as well because I couldn’t stop wetting the bed. I got in trouble whenever I did, but I can imagine how frustrating it would be to have a kid, making their way through elementary school, who still soiled their own bed every night. My doctor at the time finally explained that I just hadn’t developed the antidiuretic hormone yet, which is a hormone usually developed by the age of 5 that causes the body to produce less urine at night.

I was quiet and shy and often kept to myself. I memorized my favorite horror stories from “Scary Stories to Tell in the Dark” until I could recite them word for word. And I was so proud of that. I often wrote stories from the age of 7, and writing is still a passion of mine to this day. Books and notebooks, pencils, and other office supplies fill me with happiness, even if I never could learn to properly grip a pencil in a way that doesn’t make my fingers feel as if they’ll break (or the pencil, in that case).

Besides the social ineptness, like not being able to start conversations with other kids well or even maintain healthy friendships, if any friendships at all sometimes, I never had imaginary friends. But I did treat my stuffed animals as if they were creatures with feelings and souls. I still do to this day, and would not have admitted it before now. I would often cry if a stuffed animal was the last of its kind on the store shelf as a kid, begging for it to be taken home with me because I didn’t want it to be alone. I still have the lion I took home after one of those moments.

I’m clumsy. I trip over myself, drag my feet, walk flat-footed, and I run into tables and doors. I can’t judge distance to save my life, literally. While driving a car, my depth perception just doesn’t exist. It took me weeks of driving school and I still failed the maneuvering lessons. I magically passed with one stroke of luck on the actual driving portion of the test, but haven’t driven since.

When I get excited, I get the urge to flap my hands or wiggle my fingers, which I’ve been allowing myself to do freely now. I realized it’s been an unconscious thing for a long time, and probably much longer than I’m conscious of. It comes on strong when I get happy and experience joy so intensely I start trembling, and I grow hot and anxiety-like from being overstimulated. Sometimes this will devolve into a shaking panic attack if I don’t reign it in. This was something I got very good at hiding, but at the cost of complete exhaustion after I returned to a private space.

I’ve asked at least two close friends about the hand flapping, worried that it was a side effect of my medications, but it couldn’t have been because I could control it. I could make it stop. But yet, it happened autonomously, most commonly while I am on the phone because I pace quickly and continuously while talking. I cannot sit and have a conversation. I’m usually out of breath by the end of one from the laps around my apartment.

I have always had trouble taking a joke, and I have asked friends how to start or continue conversations with new people. I cannot clearly read sarcasm, teasing, or joking. Often, I’ll get defensive and upset and over-explain, only to feel embarrassed when I’m told it was only a joke or a tease. My mom confirmed this as well when I last talked to her.

Now, I know why all of these things have been so troubling, from communication issues — and losing friends over completely failing at expressing myself or reading their social cues — to my constant downplaying of my experiences, as well as my clumsiness and severe social ineptitude. My formal way of talking, even in text, that I often try to break because when people have read some of my stories in the past, they’ve expressed annoyance at the purple prose that is naturally how I think. It’s an explanation for why I become so intensely obsessed with things and it overwhelms me and I cannot focus on anything else, and I annoy friends with the same subject over and over until they’ve told me to stop at times. This is another thing I taught myself to reign in, or to mask as best as I could.

My “aha!” moment was when speaking with autistic friends. I realized I have a lot of autistic friends. I noticed that I’ve always related to them and find conversations easier with them than most other people. (Obviously, there are a few exceptions, and I don’t want to invalidate my few closest friends who are not on the spectrum. They’re dear to me and we have a lot of years behind us.)

I am incredibly certain, if not as certain as I was when I realized I was trans, that I’m autistic. And the reality hit me like a ton of bricks. It was hard to see that I had been unknowingly taught to mask my autistic characteristics out of fear of social rejection. The end goal for me was always to find “normal” or some semblance of a normal life like everyone else. As an adult, I thought I had no business keeping stuffed animals everywhere. I had no business messing with fidget toys or enjoying things I enjoyed in the past as a teen or a kid. I had to grow up quickly, learn to pay my bills and manage my finances despite my dyscalculia, and grow a backbone.

And now I see it was all a well-rehearsed performance in a part that society and others expected me to play. An ableist society that looks upon autistic adults with unease as we flap our hands or do harmless things like stim in public — especially with objects that appear to be made for children. Or in my case, like when I’d bite my hand in the middle of a store.

We’re considered annoying when we obsess over things, and often people lose patience with our needs, like a need to be in quiet places when necessary due to sensory processing issues. As well as that last one, I’ve had issues with doctors even making jokes that they’re surprised when a medication sits well with me. I’m so sensitive that I feel every side effect, even if it’s not serious, intensely. I have tried and gone off so many medications. I’ve joked that my body just doesn’t like medication, but it’s true.

Nothing I’ve grown up joking about is a joke anymore. I really don’t understand when someone is flirting with me. I truly am clumsy and half the bruises I get are from bumping into things or injuring myself. I really don’t understand sarcasm or jokes that well, especially if they aren’t clear or given some kind of inflection to clearly note the mood of the speech or text. I really do need to flap my hands and wiggle my fingers, and move in rhythmic ways sometimes to stim, and it feels nice and helps me cope. And I’m allowed to do it. I shouldn’t have to hide it as I have been.

Among a plethora of other things, realizing I’m autistic has explained so many things in my life I felt were faults. That I thought were weird things that made me a messed up person. And it’s a devastating thing to realize you really don’t know how to be you after all, and you don’t even really know who you are.

But I am starting to realize who I am by reflection. I am looking back at my younger years and recent ones, and I am finding patterns that have caused me to swallow down the need to start sobbing. How do I live without that mask? How do I take it off and be comfortable with who I really am?

It seems impossible, but I am finding that coping mechanisms I forbade myself from using due to my age are helping. Despite the distress I’ve felt over the realizations I’ve had, my moods have been good. I’ve started going on walks again and I have felt happiness, at least so far, for a small stretch of time. I’ve learned that it’s OK to be me. It’s OK to embrace those things I forced myself to hide or unlearn. There is nothing wrong with me after all, and that’s a feeling that settles in my chest in a way that makes me both anxious and nauseated. It’s a hard thing to accept, but if I can finally start using the right coping mechanisms in therapy, I feel my outcome will be much better.

Many autistic adults go their whole lives not knowing. I’ve lived 32 years without realizing these important things about my brain and the way it needs to work to be healthy. And that is the key to all of this. Society often feels we are different or we need to be fixed, or that we need to conform to their ideas of what is normal. This results in the masking I and so many autistic adults have done, and it can wear us down and damage us in ways we often don’t know how to express.

The reality is that there is no universal normal, and autistic people belong in society as we are. It’s not us who need to change, it’s society.

Originally published: May 24, 2021
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