Autistic Masking

A recent trend I have seen on Twitter among autistics there involved opposition to “autistic masking.” Not all autistics can mask, but many if not most can. And that creates a number of problems for us.

I’m honestly a little torn on this issue, because on the one hand, I realize that literally everyone “masks”–you are a spouse, a parent, a friend, a child, an employee or employer, and there may be remarkably little overlap among those personas you present–and on the other hand, autistics both have to mask a lot more (like stimming), and masking is much more exhausting for us than it is for neurotypicals.

Over time, though, a lot of masking just becomes second nature. Sometimes you mask without even realizing it. For example, recently Daniel started engaging in palilalia. It was only recently that I realized palilalia was something I also did–only, I did it silently, in my head. I don’t see any particular benefit to my “unmasking” my palilalia. I’m still doing it–silently, in my head–and all it would do would be to cause unnecessary stress on others for me to do it out loud.

There are a lot of things people keep to themselves. People self-censor all the time. It’s called being polite. It’s called having good manners. You learn good manners. It’s not something anyone is born with. It’s a form of masking, and it’s a form of masking that makes you a better person over time.

However, the last century has seen a rise in what I would call the “cult of authenticity.” Everyone seems to think–or at least say they think–that people ought to be more “authentic,” that they need to be their “authentic selves.” I say that’s nonsense. I don’t want people to be their authentic selves. I want them to be better, nicer, kinder, more generous than their authentic selves–even if their authentic selves are good, nice, kind, and generous. The cult of authenticity has ruined art, poetry, relationships, and general civility. Rather than expecting everyone to rise up to greater heights, we want everyone to wallow in the shallows of their “authentic” selves.

At the same time, I can understand why many autistics are truly tired of masking. Masking is, for us, a great effort and, even when well-performed, prone to breaking down. Masking for neurotypicals is easy and relatively effortless. Masks can change in less than a moment. This is hardly the case for autistics. We have to always think about what it is that the person in front of us wants to see from us. And heaven help us if the situation changes and the mask has to change. Worse, we have to mask things that others don’t have to mask. Neurotypicals are sincerely interested in other people and stories about others people, while very often we autistics aren’t. But we know it’s important to others to talk about those thing, so we feign interest. Also, if we are allowing a lot of back-and-forth in conversation, you may rest assured that it’s only because we are artificially cutting ourselves off despite having so much more to say. This, too, is a form of masking.

I suppose the real problem with masking is that while presumably neurotypicals do get times when they can be their “authentic selves” around certain people, we too often feel like we can never be ourselves–even around friends and family. When can I stim without feeling self-conscious about it? (Of course, I also rarely stim when I’m fully comfortable, so I suppose wanting both is contradictory in nature, at least for me.) When can I just talk and talk and talk about what interests me? I pretty much never get that opportunity, and I find myself less and less able to have conversations about my interests that go on for as long as I want them to go on (ah, the beauty of grad school in allowing such conversations!).

I often put up with people touching my wrists (which makes me want to crawl out of my skin), and I have to wear suits and long-sleeve shirts (remember my wrists?) in certain situations. I’ve had to get over being interrupted when I work so that I’m not biting people’s heads off. Even then, I really haven’t “gotten over” the intense irritation I get at being interrupted when I’m working on something, especially my writing. Rather, I mask it, taking a moment to calmly move out of the zone and into a space where I can converse. But let me ask you: should I have just kept biting people’s heads off, or should I have masked that reaction? I think we should probably all agree on the answer to that.

Living in the world means masking. This is true for all people. However, it’s harder for us autistics. And we’re rarely if ever given the opportunity to truly be ourselves. Which only makes it harder. Which is no doubt why there is this movement against masking. We have been pressured into always-masking (and always doing so poorly), and many have gotten sick and tired of it. The answer, for them, is to demand from everyone that we be allowed to never mask anymore. I think there are rhetorical benefits to that approach insofar as it draws attention to what we have to do to get along (and even then, not enough)–especially if it can draw attention to the fact that masking, because it’s so hard for us, actually harms us not only through mental exhaustion, but from people reacting so poorly to when the mask starts to crack. We need people to realize what we’re doing and how it can harm us. But, truth be told, we’ll never be able to stop masking. It’s simply part of being human.

New Social Environments Are Exhausting

This past week I have had trainings for my work. I have been hired as a paraprofessional in a middle school behavioral unit in Plano ISD, and that means I had to go through four days of training. I have been utterly exhausted for four days.

I have had to be in a room with about 30 strangers for four days. On day one, I’m not sure I could have stimmed more or faster. My legs shook and I was fiddling around with my pen. I stimmed less each day, but I didn’t seem to get any less exhausted. I fortunately didn’t have training today, so I was able to sleep in (not to mention going to be a little early)—I got 10 hours of sleep (I usually wake up naturally right before I get 8 unless I’m that exhausted).

My wife noted that I seem to get exhausted that way if I have a day full of meetings. I also get this way the first week or two of a new job. One can only imagine what impression that makes. After that first week or so, though, my brain adjusts to the new situation, and I am back to my old normal self and degree of energy.

Given that this is what a new situation does to me, one can also perhaps imagine why I may not want to participate in these kinds of meetings or trainings, why I may not want to start a new job or switch jobs, or why I may want to avoid situations in where there will be a large number of people I don’t know and with whom I have to interact. I can only imagine what I must look like to others.

Coincidentally, having this level of self-awareness only makes things worse in these situations, because it only makes me more anxious, which only makes me stim more and harder. It’s a positive feedback nightmare. And when your brain is running at full blast for hours on end, it’s exhausting.

Non-Verbal Communication and Autism — Some Personal Consequences

Autism is considered to be a communication disorder. It is of course much more than that, and the definition of dis-order depends on one’s standard of order, but in a world dominated by neurotypicals, our differences are considered to be disorders. And given the consequences, we might as well call them that.

When we think of a communication disorder, we are typically thinking of language as communication. However, much human communication is non-verbal, and here autistic people face a number of hurdles as well.

It was a few years ago when I came to understand the degree to which this is true in a recent situation in which I was being correctly redirected to do something other than what I was doing. When the person redirected me, I realized she was right and that I should be doing something else, so I immediately complied. A bit later, though, she asked me if it annoyed her that she had redirected me.

When I am concentrating on something–as I was in this case doing–I tend to get “in the zone.” If you do or say something to get me out of the zone, I feel immediately annoyed. I cannot help it, but I can often get over is as immediately as I feel it. What I didn’t realize is that I also showed that annoyance on my face. Which is just as immediate and something I can’t help.

Now imagine that I have been doing this all my life. Which I have. Without realizing it. Which I have. How do you think people will react to me? Or think of me?

For my regular readers, you may remember that this is not the first time this has happened to me where my attention was drawn to the look I was giving.

But I do have to wonder how many times something has gone awry because I was giving a look that I was unaware I was giving.

This just ends up on my growing list of things I seem to have to tell people about me so they won’t misunderstand my words, actions, and now facial expressions. Meaning I’m almost certainly going to have to always tell everyone I’m on the spectrum just to create the conditions under which I’ll be less likely to be misunderstood. Meaning I’ll get all the fun and pleasure of being directly discriminated against when people know I’m on the spectrum.

So those are the choices: open discrimination against me for being on the autism spectrum or have people decide they don’t like me because of my “attitude.” I’ve decided to take my chances with the former.

On (Not) Getting Disability When You Have the Hidden Disability

Over the past several months, I have been trying to get Disability from Social Security. Today I have been denied for the second time. Let me quote the most recent rejection letter:

You said you are disabled because of autism, aspergers, hip displasia, flat feet, anxiety, sensory integration disorder, and memory loss. However, your current symptoms are not severe enough to be considered disabling.

Apparently being unable to stand for long periods of time because of ever-increasing pain from flat feet, being unable to do physical labor because of constant and ever-increasing pain from hip displasia, being diagnosed with general anxiety disorder by the psychologist they sent me to, and all of the issues associated with autism/Asperger’s, including short term memory loss issues and sensory integration disorder, doesn’t make you disabled.

Those who have been following this blog know many of the problems I have had with getting and keeping jobs. If I even get a job after the interview, I cannot seem to hold on to it for long. Literally, the longest I ever had a job was a little over a year and a half. I had two such jobs. One of them I left because I was moving from Hattiesburg, MS to Dallas; the other was at UNT-Dallas, where my contract wasn’t renewed.

All of the problems I have had with remaining employed have stemmed from my autistic behaviors. The problem is that, if autism is a hidden disability, it seems to be so hidden with me that for the longest time very few people, except those who knew me very, very well, would even believe I as on the spectrum When you meet me, I’m often articulate, I can be charming under the right conditions, I’m highly educated (Ph.D.), and I’m highly intelligent. I can fake it for a fair amount of time. Enough for many to think I’m merely a little introverted.

The problem is what happens over the long term, or if I’m not in ideal conditions. If it’s too loud, too bright, too crowded, I start to feel overwhelmed. My anxiety–which I have learned really never goes away, but only waxes and wanes like the tides–increases, and as my anxiety increases, I become increasingly irritable. Over time, you will see me “goofing off,” which really means I’m writing something down to get it out of my head so I can continue to concentrate on work. But of course, you can’t do anything non-work-related on company time (except gossip, of course, which I don’t do and which takes up far more time than it did for me to write the one line of poetry I needed to get out), so I get in trouble. What they don’t realize is that I’m actually doing what I need to do to ensure I can dedicate the maximum amount of time and concentration to work. But how do you explain that to anyone?

The letter I received goes on to state that

Although you said you have various limitations caused by your symptoms, the evidence does not show that your ability to perform basic work activities is as limited as you indicated. We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in file, we have determined that you can adjust to other work.

I find all of this very curious. And it indicates there is something wrong with the way disability is determined, such that autism is almost always going to be discounted as disabiling. The fact of the matter is that my “ability to perform basic work activities” such as editing, proofreading, and writing is not limited at all. I can do that kind of work, and likely similar work, such as data entry.

But work isn’t just “show up, do your work, leave.” If work were like that, the unemployment rate among all but the most severely autistic would be 0%. Rather, depending on how it’s measured, the unemployment rate among autistics is 20%-80%–the latter for all autistics, and 20% for people who are “mildly” autistic. Why is that? It’s because work is primarily social, and when the requirements of employment are being able to be social and not be “socially awkward” that autistics face high unemployment.

My disability only becomes apparent over time, and few would even recognize it as “disability.” It gets interpreted as inattentive, goofing off, having a bad attitude, and sometimes even lazy (I was always working on projects growing up and was always told I was lazy). Each of these are neurotypicals misinterpreting the way I think and behave. In other words, my disability is only invisible to the degree that non-autistics misinterpret my expressions and actions. And even if I tell them what to expect, can we really expect them to always remember not to interpret my interactions with them through the same lenses they use for practically everyone else?

In other words, how can I get Disability if my disability is invisible? How can I get Disability if the people who are giving it out don’t really believe it’s a thing, but is just made up, is just problems with your “personality,” or whatever else they may believe when faced with someone who behaves as I do?

And I know it’s not just me. My guess is that most autistics face these issues on a daily basis, and not just when it comes to work. But where are the advocates for us? I know there are advocates out there, but I’m talking about public advocates, someone people know, out there talking about these things.

Here is where my articulateness, intelligence, and education may be able to come in handy. I’m actually a good public speaker. Perhaps, if I could find the right venues, I could use these very traits that make me an even more invisible member of the invisible disability bring greater visibility to these very issues.

Unless someone does this, how much of a chance do we have to thrive in this world?

 

Keeping Up Appearances

I’ve read that autistics tend to not care about their appearance. I did. In a certain sense. In elementary school, I always made sure my hair was perfect. I would wake up–on my own–at 5:30 to take a shower every morning. I had to wear dress shoes because only those were all-leather and fitted with a Thomas heel, which was necessary because of my feet and hip problems, but I did not have to wear the dress slacks and button-down shirts I wore literally every day everywhere, including to school. That’s why I said, “In a certain sense.” After all, as you can perhaps well imagine, my classmates all thought I dressed ridiculously, and they made fun of me over it. Even my closest friend encouraged me quite often to wear jeans.

When I started high school in the mid-80s, I started wearing jeans. Acid-washed jeans, but not regular jeans, and certainly not any with holes in them (as was the other trend of the time). I did not change that look until I started trying to dress in a sort of “grunge fashion,” which I got all kinds of wrong by wearing regular button-down shirts (as opposed to flannels) unbuttoned over t-shirts. Now I mostly just try to be comfortable, wearing shorts when I can and t-shirts. I avoid long-sleeve shirts because I cannot stand for anything to touch my wrists.

I wonder to what degree autistics “don’t care” about their appearance vs. caring but being unaware of how their appearance looks to others. Perhaps people mean autistics are less likely to brush their hair or perhaps even their teeth. But has it occurred to anyone that someone who is sensitive to touch may find brushing their hair to be an activity that actually causes pain? Has it occurred to anyone that mint might be such an overwhelming flavor and feeling to someone who is autistic that they would avoid brushing their teeth? Given there are few non-mint toothpaste flavors out there (almost all for children, especially after the lemon and orange flavors disappeared from the shelves), and given the “hot” flavor of cinnamon toothpaste likely being a turnoff for many autistics, is it surprising there are autistics who avoid brushing their teeth?

So this issue is a more complex one than neurotypicals realize. As with many things, “not caring” is perhaps a neurotypical projection of neurotypical motivations onto autistic behaviors. That is, they look at an autistic person who is dressed a certain way or doesn’t brush their hair or doesn’t brush their teeth or doesn’t wear deodorant, and thinks, “Well, if I did/didn’t do those things, it would be because I didn’t care.” But that’s simply not true. It’s no more true than if an autistic were to say, “That person has nothing they are completely and totally obsessed about? Why, they must not care about anything at all!” (But that is what we autistics secretly think about all you neurotypicals! 😉 )