#TakeTheMaskOff Week 5: Diagnosis and Masking: The Relationship Between “Weird” And “Autistic”

I became a lot better at “acting normal” once I knew how, exactly, I wasn’t.

I’ve been called “weird” for as long as I can remember. The thing about “weird”, though, is that it often offers little in the way of specificity (especially when being used by the young). “You talk weird.” “You dress weird.” “You like weird things.” “You’re so weird!”

Okay, I was weird. Cool. Good to know, I guess.

But when I found out I was autistic, I came to understand what was “weird” about me. Autism, being a medically defined condition, comes with a list of specific traits.

The fact that I didn’t sustain eye contact was “weird.” The fact that I didn’t always smile broadly or look at people when they approached me was “weird.” The way that I carried my body was “weird.”

The fact that I talked too much about things that I was interested in and too little about things that most of the people around me was interested in was “weird.” The fact that I used “big words” was “weird.”

The fact that I wore clothing with different patterns and colors and that I didn’t prescribe to a predetermined “style” was “weird.”

The fact that I cried too easily and flapped my hands when I got frazzled was “weird” (okay, I knew that before the diagnosis).

There’s also that “autistic” carries a much larger stigma to it than does “weird.” A lot of people take pride in being “weird.” In fact, a lot of celebrities design their brand on being “weird.” In some circles, “weird” was even something to strive for — it meant being “creative”, “different”, “rejecting conformity.”

But “autistic” is seen as “disordered, deficit, objectively less-than-ideal.”

I never cared that people saw me as “weird.” But, especially when I was a teenager and was not as fully into the neurodiversity movement as I am now (but even still, as an adult who regularly interacts with non-autistic adults and needs to be seen as competent and “okay” in their eyes), I did care if people that I didn’t know very well saw me as “autistic.”

So I learned to make eye contact consistently. Here, it’s important to note that I don’t suffer the same discomfort that many other autistic people report when making contact (unless the other person is visibly angry, but I’m told that this is common in general). It doesn’t hurt me to make eye contact. But I don’t, I think, gain as much information about one’s emotional state than do most non-autistic people, so it’s not as natural for me to look at the eyes, specifically, as opposed to the many, many things in the environment that might catch one’s visual attention. But I learned.

I learned to ramble less about Yu-Gi-Oh! or psychology or things I might be interested in. I became a lot quieter. But I also learned scripts like “Did you do anything interesting for [recent holiday]?” or “Did you see [recent news story]?”

I still dress “weird” because, well, I don’t understand fashion, I just don’t. But I’ve been told that I have settled upon a “recognizable style” (generally either leggings or shorts with a shirt). I think, though, that I’ve gotten better at making sure that colors “go together” (when I care to). I know to dress “up” for formal events. My stepmother also helps me out in that department.

And I never did get around to figuring out how to be less emotionally volatile, though I do make a conscious effort not to express obvious discomfort around others (I don’t always succeed, though).

Still, I get called “weird” less often these days than I did when I was younger. Some people are very surprised when they find out that I’m autistic because “You seem so normal!” I’m still not at all sure what this “normal” is that everyone keeps talking about — I couldn’t tell you what a “normal” person is like — but I know a lot of traits that causes one to be perceived as “not normal”, and, thus, I know the opposite of those specific traits.

All this said, though, knowing that I’m autistic makes it easier for me to give myself permission to “be weird” in my own company because I know why I’m weird and that this “weirdness” is permanent.

As a child, one comes under the expectation that one would grow out of one’s “weirdness.” “You’ll ‘grow up’ eventually.” “I can’t wait until you ‘grow out of it.'” “You kids and your phases.” Children are allowed to be “weird,” to an extent. The older children get, though, the more they are encouraged to “grow up” and “stop acting so childish.”

When I was younger, I thought that I would, eventually, grow up, that the same force that would make my body taller and more shapely would also make my mind and my behavior more in line with…whatever that “normal” is. When this didn’t happen, I started to wonder what was up. It almost brought on a sense of dysphoria; I was that teenager that thought I was a werewolf. But knowing that I’m autistic means that I know that my “weirdness” is a permanent and natural fixture of who and how I am.

So I stim. I pace. I enjoy what I enjoy without shame. I stop telling myself that I’ll grow out of it, that my “weirdness” is immaturity or a lack of “being there yet.”

I still do feel immature a lot, of course. Okay, almost constantly. But I’m learning.

Just as I’m learning how to be a better “neurotypical” in public, I’m learning how to be a better autistic to myself. I’m learning how to recognize when I need to take a moment and rest, recharge, disconnect. I’m learning how to accept my lapses in executive function or issues with emotional dysregulation as part of my neurology, as something that I’ll have to work around but as something that can be worked around. I’m learning to step out of the lava and to recognize both the lava and my non-lava-proof-feet for what they are.

In some ways, it is burdensome to know that one is autistic, to know that one has what is, due to the fact that society is not set up in a way that best deals with the autistic neurology, a disability, to know that one’s weaknesses and struggles are not necessarily ever going to go away, to know that some people will always see you as “broken” and “deficit” no matter what you achieve or how content you become with yourself, to know that you have something that doesn’t “get better”, necessarily.

But in a lot of ways, it is also freeing, too, to know that one isn’t “failing to be normal” because you’re “normal” for what you are — an autistic person. It’s freeing to know that there are others like you, some who have achieved things that you hope to achieve, some who have achieved more than you ever had the audacity to think possible for someone like you, many who are happy and healthy and living great lives in spite of, if not because of, that very difference. It’s burdensome to wear the mask, but it’s freeing to know that what lies beneath that mask is natural, is acceptable, is something that can lead to community instead of isolation, understanding instead of more confusion, hope instead of hopelessness.

And that’s why so many autistic advocates are pushing for greater access to diagnosis, or at least self-discovery.

There are some people who cannot afford to pursue the medical avenues that would lead to an official diagnosis (insurance isn’t always kind). There are people who are overlooked by “the system” due to being an adult, a non-male, and/or a person of color. And there are some people who simply don’t want a “paper-trail” behind them, who don’t want their autism charted on any government database lest it be used against them.

An official diagnosis can open a lot of doors to resources and supports, but even knowing what autism is, what all it can look like in different people, knowing that there are people with different types of brains and different types of behaviors and different ways of being, can make things a lot easier to deal with. It can alert one that, yes, they are walking on lava with bare feet, they’re not just making that up. But it can also make the lava that much easier to walk on, since once then obtains the knowledge that others walk on lava differently and how they do it.

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