When you work to become the mask – #TakeTheMaskOff Week 1

The #TakeTheMaskOff campaign has been designed as a way for autistic people to share our experience of life in a world that often makes little space for us. The stories, blog posts, and videos often expose a shared pain behind the smile on the face you see. Kieran Rose, “Do I look autistic yet?”, Agony Autie, and Neurodivergent Rebel did a livestream discussing the campaign.

I don’t know if someone who is not autistic is truly able to understand what it’s like to constantly monitor your voice, your face, and your body, checking that everything is as it should be while repressing or redirecting your urges to do things you’ve learned other people will see as odd or strange. And while you are doing that, you are constantly trying to match the words people utter to their expressions and body language, attempting to understand what they mean so you can work out the appropriate way to respond. Oh, and when you do, make sure to adjust your expression and maybe your body position to match what you are saying. It’s pervasive and when you developed it the way I did, that continuous cycle permeates your entire being.

The deeper truth is that for most of my life, I had no inkling that I was “masking”. I did not know that most people do not have to consciously do most of the things I do every single moment. Books did not change that perception. After all, they often describe thoughts of trying to interpret others, awareness of miscommunication, and there are non-fiction books discussing communication in depth. As a result, I believed my experience was similar in type to that of everyone around me. I just thought it came easier to them. Somehow they could always do it better. For some reason, I struggled. I was broken.

In a way that’s true, of course. That’s why it was a natural thing for me to believe. In all the years leading up to my diagnosis, though, it never once occurred to me that most of the time most people aren’t consciously thinking about their body language, expressions, and prosody. Most of the time, people aren’t semi-consciously interpreting every social interaction. Most of the time most people aren’t thinking about any of that at all. They are simply experiencing it. They believe it’s natural. I guess in some way it is, for them at least.

But it has never come naturally to me. It’s a skill I developed with a lot of effort and work as a child and one I am constantly trying to refine and improve. It requires effort and energy for me to maintain. Every second. Every minute. Every hour. Every day of my life.

And that means that the term “mask” doesn’t really fit me. A mask is something you can put on and take off. I don’t feel like that’s an option for me anywhere outside the online sphere. But my written words don’t require camouflage. They are more ‘me’, I think, than anything people see and hear in person. But even if it were an option, I have no idea how to remove my ‘mask’. It’s intertwined with my identity. It’s part of who I am. I’m aware of its presence since I have to work to maintain it, but nothing I do is exactly volitional. It’s responsive. I’ve trained myself so thoroughly, I rarely even think before reacting. I don’t ‘choose’ to mask. I’m simply trying to survive and live.

I think of it more in terms of the actions a chameleon takes to camouflage itself within its environment. My camouflage is often faulty and incomplete, but it has worked well enough that I’m still here and doing at least okay by many of the usual measures.

The reality is that I mostly pass as one of you, something that not every autistic person can do. I wrote about that experience in The Price of Passing. I guess I’m lucky? Mostly I put my head down, focus on the current demand or crisis, and try to find a way through it. It’s the way I’ve gotten through 53 years of life. I don’t really know how to do anything else, even when my efforts clearly aren’t working as well as they once did. Or perhaps they never really worked as well as I thought they did? I don’t have any answers. And despite the hashtag, I can’t say I’m taking the mask off. My words just try to expose a little of what lies underneath it.