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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When I Tell You “My Son Has Autism”

If my son is behaving in a way that you don’t like or which you think is dangerous for himself or others, and I say to you, “My son is autistic,” that does not mean:

  1. That I am excusing or justifying or even defending his behavior.
  2. That you should just keep doing what you’re doing like I said nothing.
  3. That you know more about what to do in that situation than I do, even if you’re an expert (you may be an expert in whatever activity we’re doing, but you’re not an expect in doing it with an autistic child).

Rather, what it means is:

  1. You should shut up and listen, because
  2. You are almost certainly doing something that is completely ineffective, or
  3. You are doing something that will make things worse, which could mean
  4. You are creating an even more dangerous situation.

When a parent of an autistic child is telling you that their child is autistic, it’s usually because there is a situation occurring in which what is being said and done will make things worse, not better. While threats (of not doing the activity, for example) may work with neurotypical children, they don’t work with autistic children. They either won’t care or, worse, they will care a great deal and be pushed toward having a meltdown over it.

If you are actually concerned about safety, and a parent tells you that their child is autistic, it’s time for you to shut up and listen, because it’s clear to the parent that whatever you’re doing or saying is making things more dangerous. You don’t dismiss us, and you certainly don’t double down.

We parents of autistic children know what works. It’s your job to seriously shut up and listen. I cannot emphasize this enough: S.T.F.U. and LISTEN!

Now, once you are listening, once you are paying attention, you will be told how to solve the problem. More likely, the parent will have a better solution once you explain to the parent what you need from their child. And if you want to actually have a positive interaction with an autistic child, don’t threaten, don’t raise your voice–literally don’t do anything you think would work, because you’re wrong.

Rather, calmly address the child and use reason to explain to them why they shouldn’t do what they’re doing. They will listen. And they will give you the behavior you want. Because while the autistic child may often appear like they’re not behaving rationally, the fact is that they respond to reason better than a neurotypical child does.

So, please, the next time someone tells you, “My child is autistic,” just shut up and listen. The person isn’t looking to make excuses. They’re trying to help you understand. And they’re trying to help you solve the problems occurring with their child.

Time to Write

While I was doing pretty good keeping up with this blog since I started it, the fact of the matter is that I have been writing less and less and less recently. The reason isn’t that I don’t want to write nearly as much. Quite the contrary. The reason is that I’ve been very busy teaching of late.

I have been working as a substitute teacher this past school year. Through most of the year, I was subbing at high schools, about half in regular classes and half in special education classes. This was very low-demand overall for me. I could mostly sit and read, sit and write, and if I wrote anything that I could use for this blog, I’d transcribe it later.

However, since February, I have been working exclusively at a school in their BSC as an emergency sub. Becoming essentially a full time faculty member really changed the dynamics such that it became more difficult to work on things like my book or my blog. I have gotten some reading done, and I have written a few poems, but those were about the only things I could really work on given the time demands during the day.

Of course, when I get home, I have my wife and three children, with whom I get to spend some time between making dinner and doing freelance writing work. I have tried to do more and more freelance writing work precisely because of the difficulties I have had getting a full time job. At the same time, I am hoping my success will result in something full time there.

In any case, the summer is almost upon us, meaning summer break. For a sub, bad for the checkbook, but more time at least. I’ll be spending as much of my time as possible doing freelance writing work, of course, but I am also hopeful that I will be able to return to my novel and, of course, this blog on a more regular basis.

Daniel’s Nomination Speech

The entire 2nd grade class at Arapaho Classical Magnet is going to elect a president for the entire 2nd grade class. Each class has nominated a person, and next a second round of speeches will result in all the 2nd graders voting for a class president. Any student who wanted to participate could do so.

Daniel came home very excited. He said that he had an opportunity to give a speech to his class and he wanted to give a speech on sharks. It was a few days before we found out that the speech was to get his classmates to vote to nominate him for their class. When we told him what the speech was really about, and that he couldn’t just give a speech about anything he wanted, he lost all interest in giving it.

Fortunately, Anna pushed him to write and give his speech anyway. He had been so excited to give it, and we were excited that he wanted to do it, but Daniel didn’t want anything to do with the speech afterwards. So Anna proposed that Daniel could make his platform about getting his teachers to teach more about sharks during 2nd grade.

Naturally, this would seem to be the perfect solution. But equally naturally, nothing is going to be quite as clear-cut with Daniel. “What if the teachers show a video about a shark eating a dolphin? Then they’ll just hate sharks more!” I managed to persuade Daniel that it wasn’t likely they would show a video like that if they taught more about sharks. Satisfied, he agreed to write a speech encouraging people to vote for him on the platform that he would get the teachers to teach more about sharks.

Anna sat with him and helped him with the speech. It was a negotiation between informing people about sharks and trying to get people to vote for him.

The teacher recorded Daniel giving his speech.

It will probably not surprise anyone that he didn’t win on an all-shark platform. However, we are very proud that he actually wrote his speech–the longest thing he ever wrote–and gave his speech in front of the class. It was no small thing for him to do.

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.

Habitat

Sunday after church there was a meal in honor of a member who was leaving. Apparently, Daniel (who actually likes church) had had enough, and declared, “I want to go back to my habitat.”

Imposing On Me All the Time!

A common “personality trait” of people on the spectrum is the feeling that many things are a terrible imposition on them. I certainly feel that all the time.

I feel like having to deal with other people driving on the road at the same time as me is a terrible imposition on me. They are all in my way, they are all driving too slow or taking off from the red light too slow, or driving like an idiot because they are on their cell phones (you’re not that important, people!), etc. I hate everyone in a vehicle on the road at the same time as me. Every road trip of even the shortest length makes me full of anxiety.

Having to do anything at all that is not exactly what I want to do at that given time always feels like a terrible imposition on me. I feel like I ought to be able to work on what I want to work on and that I ought to be able to make a living at it. I feel like there should be no barriers to entry for anything I want to try to do. I feel like I should not be made to work at jobs that are not completely interesting to me. I feel like when I am working that everyone ought to leave me alone to let me do my work. I feel like all bureaucrats ought to be fired because their only job is to annoy and harass people who have actual work to do. All of these things feel like a terrible imposition on me.

I suppose much of this comes about from a combination of things, such as my need to work/focus on my obsessions as well as a need for order and things to change more slowly than they typically do.

Also, I suppose this is related to my need for any and all expectations to be met. If I am told that something is going to happen (or not going to happen), and my expectations are not fulfilled, I feel as though I’m being imposed upon. And it’s not just big things.

Here’s a small example that I know logically doesn’t amount to a hill of beans, but which mattered a great deal to me anyway. My wife declared early one morning that we were all going to spend all day Saturday watching movies, TV, or otherwise just relaxing at home. Come 6 p.m. or so, my wife says she’s going to Walmart. First, she’s only taking Daniel. Then she suggests we all go. Naturally, the kids are all for it. But I didn’t want to go. I didn’t want to go because and only because she had said earlier in the day that we wouldn’t be going anywhere all day long. Had she said nothing of the sort, I would have almost certainly agreed for us all to go. I knew that, but knowing that could not overcome the way I felt. Going felt like an imposition on me. And so Melina and I stayed home and Anna took Daniel and Dylan.

A bigger thing involved my attempting to get alternative certification one Summer in order to get a job in a public school that Fall. The idea of teaching itself doesn’t feel like an imposition. But being forced to get teacher certification when I have a Ph.D. does, and having to deal with all of the administrators when I am hired somewhere most certainly does. If I knew that everyone would just leave me alone to do my job, I’d be extremely happy, and I’d do my job, and do it well. But the very existence of administrators in the world causes me anxiety and they all feel like an imposition on me and my doing my job well.

So what wouldn’t feel like an imposition?

Having expectations met. Having people always follow through on everything they say. Now, when I say “always,” that doesn’t mean things cannot come up that people can’t help. That happens. I’m talking about the casual way most people don’t actually mean to follow through on their small commitments they make throughout the day. When I tell you I’ll do something, you can guarantee I’ll do it. Unless, of course, I just plain forget. Which is, as anyone who knows someone with autism knows, a distinct possibility.

Another thing would be to be allowed to work on my obsessions. In my ideal world, at least, that would mean being allowed to work on my poems, plays, short stories, novels, and scholarly work. And having someone who would send all of those things out for me. In my less-than-ideal-but-still-pretty-good world, that would mean a job doing creative work of some sort, being constantly mentally challenged in a job where creativity and innovation are what matter more than anything else in the world. Or proofreading. I love proofreading. I can just sit and do that for hours.

I can’t speak for anyone else in the specifics, but I would be willing to bet that the first sentence of each of the two paragraphs above are true for everyone on the spectrum.

It’s probably impossible for someone on the spectrum to go through the day without feeling that something is an imposition. So long as there are people disappointing our expectations, we’ll feel it. So long as I have to drive on roads with other drivers, I’ll feel it. I can think about it, stand outside myself and write about it, as I am now, but it seems impossible for me to not feel it. So when I’m annoyed and sighing and rolling my eyes, it’s because I’m feeling imposed upon. Trust me, if I could help it, I would do away with it in a heartbeat.