Stimming – Week 2 of #TakeTheMaskOff

I wrote an early exploration of stimming, Stereotyped and Repetitive?, in my series of 2016 posts stepping through the Autism Spectrum Disorder DSM-5 diagnostic criteria, what they meant, and the ways they applied to my life. Every human being “stims” to some extent, of course. It appears to be something the human brain needs to generate sensory input, express “energy”, and possibly for other reasons as well. Everyone taps their foot, drums their fingers, hums to themselves, chews pen caps, bites their nails, or some other variation at times. However, the extent, frequency, and nature of autistic stims stand out from neurotypical stims. Most of us naturally stim more often, with greater intensity, or in unusual ways.

And yes, even late in adulthood, I can rock, ask my self a question over and over (often some variation of “what did I do?), hit my head against a desk or a wall, and more. But I never do such things where anyone can see. Moreover, in my experience those are not “normal” stims, even for an autistic person. Those are always a sign of distress for me.

However, I suppress and redirect even normal stims. It’s almost automatic when one is noticed by anyone. I interpret the fact that they found it odd as an internal red flag emergency. Whatever my expression and body language might communicate, if someone comments on something my body or voice is doing, I’m immediately on high alert. Yes, camouflaging involves active steps like managing expressions, body language, and prosody. Social rules have to be understood, interpreted correctly, and acceptable responses offered. Those are some of the active aspects of successful camouflaging. But there are also behaviors and actions that have to be suppressed and hidden. And natural stimming behaviors form the biggest category of things that must always be hidden from view.

Some things can be redirected to less visible actions. I do that a lot. I can also hold things together until I’m alone, even if I have to go to the bathroom or for a walk. But there’s a part of my brain that is always monitoring what my body is doing. And the list of things that part suppresses has only ever grown my whole life. It’s a very long list by now.

Rhi captures it perfectly in her Autscriptic, Mild Autism.

But I’m lucky I’m so mild. I’m lucky I affect you so mildly.

That’s the heart and soul of masking, at least for me. I’m desperately trying to avoid impinging on you in ways you will find … distressing. I’m trying to be human, or present in a way you will accept at least as human enough. I do that every waking minute every single day of my life.

Eventually that became overwhelming for me, especially since I had no name for it, no explanation, and no way to direct and focus my energy and resources. I’m still working to claw my way back. But I haven’t really dropped my mask. I don’t see myself doing that. I know to the core of my being that when I fail to affect others “mildly” things never go well for me.

At the 25:00 minute mark in the video below, Monique Botha expresses it poignantly and so very well. “Yeah, sometimes I might look human.” That’s the motivation behind camouflaging. We can only feel human when other people treat us like human beings.

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.