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.

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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.

Autistics Helping Autistics

Medical Express has a piece on an autistic man, Kyle Barton, who lives in the Plano area and who attended UTD who has had a hard time finding a job. The title of the piece is Man with Autism Helps Design Virtual World to Make Life Better for Adults like Him. The entire thing is well worth reading, and I don’t want to summarize it. The article not only discusses his project, but goes into the struggles he’s had finding a job.

I certainly understand that struggle. Barton certainly should not be unemployed. He is a graduate of UT-Dallas and, very obviously, very intelligent. And yet, he’s struggled to find work. I have a Ph.D. from UT-Dallas, and yet the only work I’ve managed to get have been adjunct professor jobs, and temporary and part time work. I’m incredibly thankful I now have a full time job, but it’s as a paraprofessional (don’t get me wrong, I love the work I’ll be doing, but I should be making far more given my education and abilities).

While I do hope that Barton’s work will help many autistics navigate the world better and, hopefully, find and keep work, there’s a certain absurdity to someone like him or me having trouble finding employment. We seem to mostly be guilty of being socially awkward, spending too much time working at work, being too creative, and treating too many people as equals. The fact is that most people are completely intolerant of any real differences in thinking and behavior and only tolerate superficial differences.

 

More on the Positive Side of Autism

I really do not think that enough attention can be given to the positive side of autism. There are jobs and situations out there where “I am autistic” ought to make people light up. Attention to detail and obsession with a topic to such a degree that one rapidly becomes an expert in a field ought to be popular traits. Of course, our different world view is often a deal-breaker, when it ought to be considered one of our strongest traits. But let’s be honest, nobody really wants to deal with anyone who truly sees the world in a new or different way. Until and unless people actually learn to appreciate creativity and different ways of thinking rather than merely giving them lip service while actually demonstrating their overwhelming preference for the same old thinking that they’re used to, we on the spectrum are going to continue to have a hard time of it.

A Pathological Look at Neurotypical Behavior

When you read about autism, you typically read about it as a pathology. Autistic people are viewed as being normal people with pathological deviations from the norm. Every so often you will come across an article that delineates a few of the special abilities of people on the spectrum, but even in doing so, it comes across as “well, at least there are a few positive things that come out of this tragedy.”

Autism is a structural variation in the brain’s architecture that gives rise to differences in processing and in different abilities. One may even argue that it gives rise to a different kind of mind. The vast majority of those people are in the “mild” end of the spectrum, though a great deal of focus is on the “extreme” end, with those who often cannot speak and seem to be particularly mentally disabled. This focus further pathologizes the spectrum precisely because it does not fully or even properly represent the reality for most people with autism.

To fully understand my point, I want to treat those not on the spectrum as though autism were the norm and what we now call neurotypical behavior were the minority. That is, I want to treat neurotypical people the way they treat people on the autism spectrum, from the perspective of someone on the spectrum. Because, from our point of view, you are full of deficits.

The Pathology

Irrational behaviors are one of the primary aspects of neurotypical people. Very often decisions are made without a great deal of thought or, certainly, research. This is especially true when it comes to their opinions. Whereas a sensible autistic person will do a great deal of research before developing an opinion or coming up with a proposed solution, neurotypicals have been observed to have an immediate opinion on things without, apparently, knowing the first thing about the topic. This is different from the kinds of errors autistics make from managing to miss something in their extensive research; rather, the neurotypicals carelessly won’t do any research at all before making a decision. And if they do any research, it will be at best a truncated version, as if they are impatient to come up with any answer at all rather than to make sure they have the right one.

It seems that a strong reliance on emotions is a typical reason for this immediate, almost knee-jerk, way of making a decision. As a result, it is not uncommon for them to agree with a solution that sounds good, sometimes regardless of the overwhelming evidence against the proposal, rather than something that has a track record of actually working. This seems to especially be the case in the areas of economics, the social sciences, and government. While this same tendency does allow them to respond more quickly to others, sometimes that is done at the expense of properly assessing the social situation. Fortunately, they do seem to have a particularly strong ability to make that proper assessment, so we must admit that in this particular case their pathological tendency toward immediate conclusions is often beneficial.

Having said that, there are some very strong negatives of that ability that seem to be combined with a kind of empathy that makes them more likely to identify more with people like themselves than with different people. While we autistics have a tendency to not be judgmental or biased, neurotypicals are terribly judgmental and biased. They judge people on things like race, sex, gender, deviations from the way they themselves think, culture, religion, and pretty much any difference one could possibly imagine, often to the point of hating members of other groups. Some autistics who have been raised with these people have learned these behaviors themselves, even though they are not typical to us. This makes associating with neurotypicals potentially dangerous, unless we remain on our guard against their biases.

This note on this particular moral deficit brings me to the topic of the large number of moral deficits commonly associated with neurotypicals. They have an under-developed sense of loyalty, and many do not seem to show any degree of loyalty at all. Further, they seem willing to lie about just about everything. The primary use of language for them seems to be to lie to each other. They will tell each other they look nice when they don’t; they will say one thing to one person, and another to another; they will backstab; they will tell their friends they are right when they know their friends are wrong. I could go on and on with the ways they lie to everyone.

They will also exaggerate and say things they don’t really mean. They will sometimes use words to mean completely different things. For example, I recently heard one of them say, “Give me a smack.” Which seems an odd request. But then I saw their neurotypical partner give them a kiss in response. How strange to ask for the opposite of a kiss and then to get a kiss! As a result, it can be very frustrating to deal with neurotypicals. You never know if they really mean what they are saying, you do not know if you can ever really trust them, and if you make the mistake of thinking they think the way you think, you will too often find yourself screwed over without your understanding what just happened.

Another odd behavior neurotypicals exhibit is their habit of “small talk.” From what we can tell, small talk appears to be talking just for the sake of talking. A “how are you doing” results in the same non-answer of “fine.” It seems unlikely everyone everywhere at all times is truly “fine,” so it seems that that is a non-answer to what is in fact a non-question. It has been observed that if you give an actual answer to the question, the questioner gets frustrated and impatient, as though they are annoyed that you would actually answer them. A whole conversation can actually go on like that, with general questions giving rise to pat answers so that you could actually change out any pair of people and you would end up with the same conversations each time. The vast majority of their conversations are not about anything of any substance, and, again, they seem positively annoyed if you try to engage them in such a conversation. As a group neurotypicals seem positively frivolous most of the time.

This frivolity extends to their work. They treat work as a social experience rather than as work. They don’t seem to treat work seriously or to engage in it with the kind of attention we autistics do. How any of them can keep a job is a mystery. Perhaps their ability to lie to their bosses and to pretend deference to them is what keeps them employed despite their inherent laziness. They also do have a tendency to do things exactly as they are told to do them rather than to find new ways of doing things. While one could view this as a lack of creativity on their part, in many cases it is useful to have a group of people who will unquestioningly do what they are told. If you can keep them from wasting their time socializing, businesses could make good use of this tendency to conform and engage in groupthink.

How It Feels to Be Made a Problem

I’m guessing you didn’t like the above description of yourself. You no doubt agree with many of the things listed, that they are all-too-often traits of the typical person. And no doubt many of you have made positive efforts to overcome those things—especially such things as racism and sexism. Indeed, we on the autism spectrum also make an effort to overcome what are perceived to be deficits. And yet, there are no doubt things I discussed above that you would argue are unusual, to say the least, interpretations of your behaviors. Well, guess what? That’s how we feel about many of the things we read about people with autism.

For example, we read that we do not have empathy or a theory of mind. That’s utterly ridiculous to us. We fully understand you have a mind—we just treat you like you have a mind like our minds, which results in a number of errors on our part. But guess what? You do exactly the same thing. You treat us as though we ought to have your mind, and when we obviously do not, you actually go so far as to declare that we don’t have a theory of mind! In the past people used to dehumanize others from other races and cultures using exactly this same logic. Since the person from the other culture does not act like us, they must not be human like us. We now know this to be untrue—and to be outright racist—but this way of thinking still manages to creep into studies of people with autism.

Yes, there are studies of young children involving hiding a toy, removing the child who saw where the toy was hidden, then moving the toy elsewhere and bringing the child back in where the young autistic children do not properly recognize who knows what, but where are the studies of older children and even adults? Why is it that we autistic adults don’t make this mistake? Could it be that the development of this ability is simply delayed rather than absent? Indeed, I see a great deal of evidence that people with autism have a tendency to have to learn through direct instruction many more things than do neurotypical people, who seem to have a large number of instincts that allow them to learn certain things more quickly. This is a difference in learning, not necessarily a disability or pathology. It is slower, but more accurate. As with anything, there are tradeoffs.

Finally, I want you to consider something else we autistic are always hearing. Given the negative aspects of neurotypicals listed above, what would you think of calls to fix you? From an autistic’s perspective, you would be much better people if you were more autistic. You would lie less, be less biased and judgmental, and be less frivolous. You would waste less time at work and get more work done. You would say what you mean and mean what you say. From our perspective, life would be much better for you if you were more like us. Now how does that make you feel? I can describe you as a pathology, as a problem that needs to be fixed. I am certain you didn’t like it one bit. Well guess what? Neither do we. If people would spend more time talking to us rather than studying us as some sort of black box that can only be understood by external observation of our behaviors, you may have known that by now.

Different Isn’t Worse

People with autism aren’t broken normal people. We are different. Our brains have different architectures, different biochemistry. It is driven by differences in our genes. All of which give rise to a different way of thinking and thus to different minds. Some of our minds are closer to neurotypical minds than others. It is a spectrum, after all. And some people with autism are definitely disabled when it comes to living in the neurotypical world. But then, there are extreme examples of the neurotypical mind as well—people who are pathological liars, people without morals, people who cannot seem to tell the difference between themselves and the external world. The difference is that they are closer to you, and thus seem more normal to you. To me, a man whose autism would be considered “mild,” those with severe autism seem more normal. I get how they are thinking. It is different, not wrong. And if people were more accepting of those differences, I would predict that many of our extreme negative traits would lessen considerably. We are frustrated, and that frustration comes out in a variety of negative ways. But then, consider what would happen if everyone treated you as a disease needing to be cured and not as someone who needed to be truly understood in the least?

Coming to this understanding between autistics and neurotypicals matters. Given the negative social consequences felt by pretty much everyone on the autism spectrum, we can only conclude that autism is one of the last ways of being human for which it is still completely acceptable by everyone to discriminate against. We are punished in the schools, discriminated against there, with the result that only around half graduate high school. Those who go to college don’t do much better. And even if, like me, one not only graduates from college but gets graduate degrees, one finds upon graduation that the work world is almost completely hostile to you. Not because we can’t do the work—because not only can we do the work, we will likely do it better than the average neurotypical person—but because we don’t interview well, we don’t acknowledge hierarchies, we are blunt, we come across as arrogant, and we aren’t social in typical ways.

I wrote this piece in order to help the average person understand what it’s like to be treated as a pathology. It can just as easily be done to you as it has been done to us. Does that mean you are a problem that needs to be fixed? Or does that mean we ought to be considered fellow human beings whose minds are part of the natural variation among human beings, whose contributions to society are vital for social health? We correctly recognize that acceptance of cultural, ethnic, racial, and sexual diversity results in a healthy society. Perhaps we can one day soon include different ways of thinking, different kinds of mind as well.

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.

The Struggle With the Daemon

I recently finished reading The Struggle with the Daemon: Holderlin, Kleist, Nietzsche by Stefan Zweig. For someone on the spectrum who is himself a literary writer (or, at least, I try to be), this book very much felt like it ought to have been titled The Struggle with Autism, especially as each of the three artists’ sections felt like an aspect of my personality was being emphasized–albeit, much more intense versions of me (I’ve managed to avoid descending into a final state of insanity, and I’ve never felt suicidal–though it’s my understanding that the last is an all-too common feeling among autistics).

Holderlin would seem the hardest case to make among the three, except many of his feelings as described by Zweig seem my feelings as well. Getting caught up in an obsession, and feeling like the rest of the world is a terrible imposition on your work is a very autistic way of being in the world–at least, from my experience.

Kleist, on the other hand, just screamed “autism” from Kleist’s description. For one, Kleist wandered all over Europe, and autistics are known to be avid wanderers (which can be a major problem when the wanderer is a child). “He was reserved to excess, and kept everything locked up within himself. He did not express his passions either in looks or in spoken words” (158). Zweig says

he remained mute, not from dumbness or sloth, but from overpowering chastity of feeling; and this silence, this dull, brutalising, oppressive silence, which he would maintain for hours when in company, was his most salient characteristic–that and absence of mind, a confusion which obscured his clarity of intellect. When talking, he would suddenly break off and stare into vacancy (158)

He could not converse unconstrainedly in an exchange of the small talk of ordinary life. Convention and customary obligations were repugnant to him, so that many assumed there must be something “dour and sinister” in this unusual companion; while others were wounded by his harshness and cynicism and bluntness when, as happened now and then, pricked by his own silence, he threw of all constraints. (159)

“Those who did not know him intimately believed him cold and indifferent. His intimates, on the other hand, were afraid of the fires that consumed him” (160).

If you’re autistic, perhaps especially if you have Asperger’s, this may sound quite familiar to you. If you know someone with Asperger’s, this also may sound familiar to you. Zweig’s description of Kleist throughout the book only reinforce my original conclusion (based on the above quotes) that Kleist had Asperger’s.

I have already written about my belief that Nietzsche had autism, and Zweig’s description only confirmed my beliefs. However, there is something quite interesting that Zweig pointed out that sounded quite personally familiar–and I would be interested if my autistic readers have had the same experience.

What makes Nietzsche’s transformations so peculiar is that they seem retrogressive. If we take Goethe as the prototype of an organic nature in harmony with the forward march of the universe, we perceive that his development is symbolical of the various stages of life. in youth he was fiery and enthusiastic; as a man in his prime he was actively reflective; age brought him the utmost lucidity of mind. His mental rhythm corresponded in every point with the temperature of his blood. As with most young men, he began in chaos and ended his career in orderly fashion, as is seemly with the old. After going through a revolutionary period he turned conservative, after a phase of lyricism he became a man of science, after being prodigal of himself he learnt how to be reserved.

Nietzsche took an opposite course. Instead of aspiring to an ever more complete integration of his ego, he desired complete disintegration. As he advanced in years he became increasingly impatient, vehement, revolutionary, and chaotic. His outward aspect was in strident opposition of the customary evolution of a man. While his university companions were still delighting in the usual horseplay of undergraduates, Nietzsche, though but twenty-four years old, was already a professor, aspirant to the chair of philology at Basel, that famous seat of learning. At twenty-four, Nietzsche’s intimates were men of fifty and sixty years of age, sages such as Jakob Burckhardt and Ritschl, while his closest friend was the most celebrated artist of the day–Richard Wagner. (288-289)

Zweig goes on and on about the staid, scholarly Nietzsche, then notes that when he was thirty, he resigned from his position with a pension, went to live alone in Switzerland and northern Italy, and transformed himself into the writer of Zarathustra–a transformation that ended with Nietzsche’s loss of sanity. His life is the reverse of Goethe’s.

Now let me give a brief of my own life. In grade school, I wore dress slacks and button-down shirts. In high school, I started wearing jeans, but they were dress jeans. I went to college to major in recombinant gene technology, then attended graduate school in molecular biology. During grad school, I started wearing t-shirts and listening to contemporary rock (alternative music–I started in with the grunge scene with Nirvana’s In Utero, when I was around 22). It was around this time that I started reading Nietzsche, and I also started writing more fiction and poetry, and myself growing more and more chaotic.

I dropped out of grad school, had two massive anxiety attacks, started writing Hear the Screams of the Butterfly to deal with all of my emotional issues, and also took a year of undergrad English classes to get into a graduate program in Creative Writing. While there I was quite bohemian in my lifestyle. If there was a reversal, it was when I started my Ph.D. program in the humanities, where I started off doing creative writing, but ended up with a scholarly dissertation. After graduating, I met my future wife, got married, had three children, and have lived the past decade wasting my scholarly and writing talents in looking for gainful employment. I’ve also grown more radical in my politics, and I think more daring in my art.

Now, do not get me wrong. I would trade nothing for my wife and children. In that I’m a happy Goethe, so to speak. However, an inability to go “full Goethe” in the sense of his life development, has meant considerable employment difficulties. At the same time, I have been fortunate in also not going “full Holderlin/Kleist/Nietzsche” either. I’m instead in an uncomfortable truce, neither giving in to my obsessions nor being able to live a “normal” life.

The scientist I was in college became the artist became the artist and interdisciplinary scholar–became more and more interdisciplinary, unspecialized, going in the opposite direction of most people. I’ve grown less conservative over time, less satisfied with life, more radical. That is, from order to chaos. Nietzsche is a model for my own changes, though I certainly had no intention to follow that model–it just seems a natural development. Yet, I struggle against that development, and thus (mostly) keep it under control. The forces of order and the forces of chaos are always in a constant struggle within me. I continue to alternate between art and scholarship. If anything, my family is what keeps the struggle just barely on the side of order.