finally

Finally, a neurotypical experience that mimics autism: ‘Zoom fatigue’

This article discusses how taxing social interaction is over video platforms because of challenges in interpreting unspoken information, which may be obscured or absent due to teleconferencing platform issues. Critically, it discusses the amount of concentration required and how exhausting it is, something those of us on the spectrum are all too familiar with, as this is how hard communication is for us all the time.

If you think it’s tough to concentrate for an hour or two, try doing it all day while you’re at work, or in class, or trying to be productive, and you’ll get a taste of what it’s like to be autistic in a neurotypical world.

https://www.nationalgeographic.com/science/2020/04/coronavirus-zoom-fatigue-is-taxing-the-brain-here-is-why-that-happens/?utm_source=pocket-newtab

A screenshot of a dot-pattern photo of the upper half of a man's face. The man is wearing glasses, and a computer screen is reflected in them

Posted in Aspect IV | 2 Comments

not like this

Photograph of a four-pane window at the far end of a dark, heavily shadowed hallway

Photo by Laurent Perren on Unsplash

This is not what I wanted.

High-functioning autistics like me who live alone and work from home fight a constant battle against expected levels of socialization. We have to self-limit because of how exhausting it is, and we are constantly apologizing and feeling less than because of it. Over the course of my adulthood, I’ve had to cut out rock concerts, wedding receptions, graduations, amusement parks, arcades, and plenty of other high-stimulus, high-density activities because they inevitably trigger meltdowns, a state of being so completely overwhelmed that it results in physical acting out (I’m a thrower), a temper tantrum, or sobbing, often all at once. (Unsurprisingly, I now avoid risking this humiliating experience when out in public at any cost.)

So you’d think this whole social distancing/no large gatherings thing would be a dream come true, and for the first couple of weeks, it absolutely was. The constant pressure I was under before, to do more than I was able to, was lifted. I no longer had to shut out the potential judgment I might receive for demanding special treatment for my autism, like having the music turned down at a restaurant, or being allowed to wait in a different place from the other patients in a doctor’s office, or not being able to go to a friend’s baby shower. I could putter around doing all my little weird self-care things that enable me to act “natural” in public for the brief periods of time for which it is required and for once not feel guilty about them.

After a month and a half of this, however, I have come to realize that the few and brief social encounters entailed in running my usual errands were a valuable component of my minimal social existence. Even though I resented the expected performance involved in doing them, they were still the lion’s share of my contact with the outside world. As it turns out, a little bit of socialization is vastly different from no socialization at all.

For an autistic, being home alone all the time makes it hard to remember that bathing regularly is still required, as is putting on actual clothing instead of the same sweatpants and t-shirt for days on end. Occasional visits to the grocery store are the only thing keeping me on the straight and narrow regarding personal hygiene. As an experienced work-from-homer, I’ve long since known that teleconferencing only requires a warm-bulb desk lamp, a not-black shirt, and lipstick, all of which can be easily achieved without a shower, deodorant or toothbrush.

Before this happened, every time I left the house I had to put on a fake face and constantly concentrate on not just what I was saying but how I was saying it. Pumping gas, going to the drugstore, ordering coffee, waiting for my dry-cleaning, everything. My whole life was built around making sure I was able to do that when demanded. But now that it isn’t demanded, under the new status quo involves maintaining a six-foot distance and wearing a mask that hides most of my face, the routine has broken down.

Why bother spending time meditating in the morning if I don’t have to steel myself to interact with neurotypical people? Why eat a meal at a certain time if I’m home all day and I can eat whenever I want? Why wear nice but uncomfortable clothes if no-one will see them? (So much for the dry-cleaning.) Why do anything I consider socially prescribed nonsense at all?

Conformation to neurotypical expectations dictated every waking minute of my day, even though very little of it was spent outside my home. Now that the pressure of those expectations has been lifted, I’m bouncing around this apartment like a super ball in an empty racquetball court, moving too quickly and erratically to grab on to anything, to prepare for anything, to settle in any given place. My neurotypical performance was my gravity. I would never have realized it otherwise, but I am adrift without it. It now seems that my trips to the pharmacy, the nail salon, the coffee shop, despite the outsized amount of energy expended in doing them, were incredibly important. I actually miss them, performance and all.

I have yet to find my bearings in a world where compensating for my autism is no longer required. Much as I longed for it before, now that it is here, I am at a loss. As I wait for things to go back to “normal,” at a time that has yet to be defined, I am reminded I have never been good with uncertainty. Now it clings to me like wet air on a humid day. I can’t escape it; I can’t even leave the apartment and leave it here more than the couple of hours every week or two when I venture out, masked and gloved, to re-up on groceries and necessary supplies.

My anxiety over hiding my autism has been replaced by an experience I now share with just about everyone, autistic or otherwise. I can’t shake this feeling of impending disaster that could occur at any time and for which an endpoint can’t even be remotely visualized, never mind assured. For once, I really am just like everyone else.

But this is not what I wanted. Not like this.

 

Posted in Book Two - Mind, Setting 3 | Tagged , , , , , , | Leave a comment

Interview on LearnFromAutistics.com

A screenshot of the opening paragraph of Christine's interview on the Learn From Autistics website

Christine M. Condo’s Interview about Autism, Masking, and Self Care on the Learn From Autistics website

Click the above to read Christine’s interview on the Learn From Autistics website about accommodations , autism coping strategies, and self-care.

 

Posted in Book Two - Mind, Setting 3 | Tagged , , , , | Leave a comment

you break it, you buy it

A photograph of an elephant walking away from the viewer towards a pool of stones and water

This is my best side

Photo by Sergi Ferrete on Unsplash

It is extremely rare that I come across an article that I think explains a point of view with more clarity and poignancy than I ever could. The article indicated below, however, more than clears that bar.

I have long assumed that the oblivious march toward an alternative reality, wherein experts are disparaged in favor of “hold my beer” jackasses who lie freely about the state of our country and no-one cares because it’s what they want to hear, was unstoppable. I figured by the time America got the other side of this particular phase of ass-hattery I would be long gone.

But the dumpster fire that is the POTUS handling of the coronavirus pandemic may yet finally be the demise of this unfettered obtusity. Despite what certain “news” sources have been insisting for years, it turns out that, actually, you can’t make your own facts. Really.

“Republicans like me built this moment. Then we looked the other way.”

-Stuart Stevens The Washington Post, March 3, 2020.

For those running up against a paywall, here is an associated article that liberally quotes the above that you can read for free:

“The GOP Principles That Paved the Way For Massive Suffering”

-Nancy LeTourneau Washington Monthly, March 23, 2020

Posted in Book Two - Mind, Setting 2 | Tagged , , , | Leave a comment

unrelated

A photo of a dog on the outside of glass door looking a cat sitting on the inside of it

 

Humans naturally relate each other. It is how we connect. We empathize by relating one of our experiences to that of the person we are engaging with. Shared experiences, such as being on hold with customer service or not finding jeans that fit properly, allow us to bond with our fellows and recognize one another as members of the same tribe

Unfortunately, in the context of autism, efforts by a neurotypical to relate to the experience of someone on the spectrum are not only misguided, but belittling and minimizing. For instance, while a neurotypical person may dislike, even hate, large crowds, an autistic in the same situation would be in fight-or-flight panic mode, unable to hold him or herself together and at risk for a humiliating public breakdown if they can’t escape.

Not the same. Not even close.

Some neurotypicals try to empathize with their autistic peers by mistakenly assuming that autism is just an extreme form of introversion. While I appreciate the attempt to hang the experience on a recognizable scaffold, that is just not how autism works. In fact, some autistics are actually extroverted and don’t like being alone. Strictly speaking, an introverted person needs to be alone to recharge, while an extroverted one is energized by being around people. Neither of these have anything to do with the experience of autism.

Being autistic is so different from the neurotypical experience that it defies our natural inclinations to relate to another person. We autistics cannot imagine what it is like to be neurotypical, although many of us have learned to mimic it, a technique referred to as masking that entails a significant cognitive investment–and comes with a significant psychological downside.

Similarly, the neurotypical cannot imagine what it is like to be autistic. Many autistics themselves are unaware of the depth of difference between their experience of reality and that of those around them. For a neurotypical person, the very idea that an experience of reality fundamentally different from their own exists is virtually impossible to imagine. The social milieu in which we operate is designed by and for a very specific way of thinking, feeling, and reacting. As this is the way the vast majority of people experience this milieu, it is rendered invisible. It is not a manner of being in the world. It is the manner of being in the world, a perception that necessarily precludes the existence of any other.

Before autistics can advocate for what we need, we have to carve out not just how we experience the world differently, but the very fact that such a thing is even possible. In a society designed around relating in, this entails explaining to everyone who asks that a different experience exists before we can describe what this difference is.

This is rendered more challenging by a current lack of terminology therein. (I can only speak for the English language in this respect; feedback from native speakers of other languages would be most appreciated here.) How do we explain the difference between a filtered and unfiltered visual and aural environment? How do we describe the physically painful responses we have to certain stimuli? How do we effectively convey how we shut down when depleted? How do we talk about how painful it is to feel like aliens in our own cultures, unable to engage with our fellow beings the way they engage with each other?

How do we talk about a completely unrelatable experience to our well-meaning peers trying so hard to imagine what it must be like?

I used the word “scaffold” earlier, purposefully. In terms of learning, a scaffold is a structure we build in our minds not to understand something, but to use to understand something. This difference is critical.

No such scaffold exists for autism. A bridge between the neurotypical and autistic internal and external experiences of the world we live in has yet to be built. Before we can establish what the autistic experience is, we have to build a scaffold for it, the core piece of which is an acceptance by neurotypicals that a vastly different experience of reality exists. From there, we can start to lay out what it entails.

Only then will we be able to start creating a place for ourselves in this milieu. Only then will we be able to describe the indescribable. Only then will we have a platform from which to ask for and design experiences built around our unique needs.

Critically, we need neurotypicals to resist the temptation to relate in when we talk about our autism. Instead, we need them to express a willingness to open their minds to a different way of perceiving and feeling the world.

Let the scaffolding begin.

 

 

Posted in Book Two - Mind, Setting 3 | Tagged , , , , | 1 Comment

plant your flag elsewhere

Recently, a friend tried to convince me of the validity of a new treatment for autism that, as many of these purported treatments do, lacks a plausible explanation for how it works. Nonetheless, I respect the friend and thus did my due diligence with a search of PubMed. Keywords from my friend’s description, together and independently, yielded one, and only one, result, a study of dubious validity from 2018 that was tangentially related. (And before you suggest that PubMed curates the studies that show up in its database, please allow me to point you to the 31,842 studies that show up for the keyword “acupuncture.”)

The point I want to underscore in this case, though, is not the lack of evidence, which was expected, but that the premise underlying this type of research is itself flawed.

Autism is not a disease. As such, you can’t treat it, any more than you can “treat” a person’s sexual orientation or left-handedness. You can treat, or at least teach coping mechanisms for, issues associated with autism, like anxiety, agoraphobia, and sensory sensitivity. However, there is no magic pill or other device that will make autistic people less or non-autistic. While research on the functional underpinnings of the brain is ongoing, researchers are coalescing around the idea that autistic brains function in unique ways, and that such functioning constitutes a difference, not an impairment.

In short, being autistic does not mean something is wrong with you that needs to be fixed. You do not lack functioning. You just function differently.

One of the obstacles to acceptance of this idea is that certain autism “experts” (who are not autistic themselves) still describe features of autism as deficits, such as “lacking” central coherence or “unable” to perceive unspoken information cues.

Such assumptions are entirely a matter of perspective. It is just as accurate to say that non-autistic people tend to overlook small details and that they are impaired in their ability to set aside social custom when necessary. Yes, an autistic person has to exert herself to hide her autism, but a non-autistic person would have to exert themselves at least as much to function autistically.

Considering that scientifically-backed means to help autistics manage their autism-related challenges already exist, such as chewelery (chew toys that grown-ups can wear), sound conditioners, and weighted blankets, I’m not even sure why anyone is still barking up this proverbial tree. Other than the hate-speech group A_____ S_____, the current consensus is that neurodivergence is just that–a divergence. Not a defect.

The lack of connection to medical reality in the procedure touted by my friend was troubling to me from a scientific perspective, and should at least be mentioned, if not harped on in my usual fashion. To whit: there are thousands of peer-reviewed studies by credentialed scientists exploring genes, electrical activity, and receptors related to the autistic brain. It seems unlikely that lay people messing around in this space would unearth something that the legion of scientists studying autism over the last fifty years did not, and I find it upsetting that such activity persists, not just for autism, but for many other conditions, as well.

Setting this soap box aside for time being, though, even couching autism as a disability is problematic. Some disability advocates argue that the term “disabled” has outlived its usefulness, in that it implies that certain traits suggest a lack of ability rather than a non-traditional mechanism for one. Until we can de-center “normal” as the standard against which everyone else is measured, though, disabled is all we’ve got, implications and all.

Whether or not we think of ourselves as disabled, it remains challenging for us to function in an environment designed by and for non-autistic people. But that doesn’t mean there is something wrong with us.

We just see the world differently. If anything, that is an asset, not a flaw. And rather than “treating” it, we should celebrate it.

Posted in Book Two - Mind, Setting 3 | Tagged , , , , , | 1 Comment

that look

A photo of a Pomeranian dog looking skeptically over her left shoulder at the camera

You lost me

If you’re autistic, you know exactly the look I’m talking about. It’s the one you get from a neurotypical person when you step outside the prescribed boundaries for casual interaction. You’ll be going along hiding your autism well enough and then suddenly something you say is a miss and you lose them. There are more ways for this to happen than I’m sure I know, but common missteps include introducing what you think is a related topic but isn’t, or failing realize that someone is making a joke, or thinking someone is kidding when they aren’t.

It only takes one small error and there is that look. It is a mixture of what appears to be (of course, I never know for sure) a mix of befuddlement and distaste, and maybe even tinged with a little fear. The game is over; they see my mask for what it is. They have realized that what they thought was a nice normal dog is in fact a barely socialized hyena liable to bite them at any moment. They are often at a loss for words. The way they look at me is painful. For both of us.

It’s painful for them because I have cut them adrift from socially inscribed rules of shared context and understanding. The loss of common ground renders them as uncertain in that moment as we autistics are all the time. It’s painful for me because I am usually exerting myself as much as possible to keep it from happening, and when it happens anyway, I feel like a failure.

For the record, most people, autistics included, do not like to make others uncomfortable. Those of us on the spectrum already feel so isolated, so imprisoned by our autism, that we will do almost anything to make a connection with those around us, even if it means hiding our true selves and pretending we’re someone we’re not. Most of us have spent most of our lives trying to figure out, through a laborious process of elimination, how not to upset or alienate our non-autistic peers.

When even these well-practiced and highly refined strategies are nonetheless found wanting, it is incredibly demoralizing. Just once, I wish I could run an errand and not have to present a fake facial expression and fake tone of voice, professing a fake interest in things I could not care less about if I tried. But the me that doesn’t do that has long since been beaten into submission and locked away where it can’t do any more damage, to other people or to myself.

And I keep running up against how I feel about it and how to get past it. In the one sense, it seems cruelly unfair that I have to play let’s pretend every time I answer the phone or leave the apartment or get out of my car. On the other, I am deeply sad that my real inner self will rarely been seen and even more rarely validated, and I desperately wish things were different, and that I either wasn’t autistic, or didn’t have to hide it any more.

And I know–I know–that not having to hide my autism is a goal that is unlikely to be realized in my lifetime, and that those and others like me have to plow this road in hopes that the next generation of autistics can be more authentic than we will ever be able to be.

But I’m so tired. I’m tired of having to play this stupid game and I’m tired of having to deal with the consequences of an adult life wherein the only way I can work and socialize and make friends, with vanishingly few exceptions, is by presenting a made-up, inauthentic personality that must be consciously maintained, because if I slip up even in a tiny way, I get that look. The look that reminds me, in no uncertain terms, that I am not like other people, and that I never will be.

Despite the fact that the subtleties of unspoken communication are not visible to autistics, that look is unmistakable. It is vastly different from the normal set of facial expressions I’ve learned to imitate. It is equal parts self-doubt and distaste. For a long time, I didn’t realize what the look meant. It didn’t start to dawn on me until I was well into the coping mechanism-development stage of my life, probably around my early thirties. Now, though, I recognize it immediately, and have belatedly come to realize that I have seen it, time and again, for years and years, and that it will be something that never stops happening, no matter how good I get at this neurotypical disguise I have so painstakingly cultivated.

I can’t stop now. But there’s still a little voice in my head that wishes I didn’t have to, and that I am not only incapable of doing anything to change the way things are, I am delusional in thinking that such change is even possible. And I wish I could just crawl under my weighted blanket and not have to do any of it, ever.

It’s hard, sometimes, for those of us on the spectrum to decide whether or not we ought to or want to do something. We’re not especially familiar with how either of those things feel. So for me, I think about how I might feel ten or twenty years from now if I hadn’t done it. If I’m OK with it, then that answers my question.

If I’m not OK with it…well, that does, too. And that’s where I am. I wish it were different, but the only way to make it so is to pick up the ball and carry it a few more yards downfield. So that’s what I do.

Posted in Book Two - Mind, Setting 2 | Tagged , , , | 7 Comments

how you can help–covid update

To my esteemed readers:  In this challenging time, I would like to encourage you to seek out and donate to your local food banks if you are able. You can go to this website to locate one in your area. Thanks! -TGA

Click here to read TGA’s article in The Washington Post

Posted in Other | Tagged | 7 Comments

just for looks

I have been undergoing the arduous and humiliating process of applying for disability here in the U.S. for my autism. If you thought that in this day and age, there would be an established mechanism for this type of disability, well, surprise, not so much.

You can apply and submit online; however, that is where the technology stops. Thereafter, you receive what is undoubtedly a form letter with your case number on it telling you more information is needed. Also enclosed therein is a twenty-three page form (not an exaggeration) that you must fill out by hand and mail back to them in the envelope provided. You are required to do this within two weeks of receiving it.

As soon as I looked at the form, which appears not to have been changed since the Clinton administration, I realized this was not going to be something I could complete in an afternoon. Designed for people with physical and not psychological disabilities, the questions were nonetheless invasive and personal. They don’t just ask about your work history; they ask you about the most intimate details of your life, down to personal care and hygiene.

They even ask if you care for pets. My animals are a necessity for helping manage the anxiety and loneliness of being on the spectrum, but there wasn’t anywhere to explain this phenomenon (they are not, technically, service animals). I was forced to admit that I did care for pets, although I attested to needing help transporting them to and from the animal clinic, mainly because wrangling them into the carrier is a two-man job, and the two girls are, ahem, well-nourished and together weigh almost 30 pounds and have to be in the same carrier to keep them from freaking out and howling the whole way there and back.

I spent several days writing out answers to the questions in a separate notebook, trying to figure out how to effectively communicate my particular challenges on a form designed for something else entirely. I had to describe the routine I have established for self-care that must be performed in the exact same order each time lest I forget some part of it, like brushing my teeth, which I don’t mind, or showering, which I despise. Nowhere was there a place for me to explain how much harder even such basic things are for me than they are for other people.

The form was also ill-suited to an explanation of the mental exhaustion entailed in producing a neurotypical performance under constant sensory duress, which, for people on the spectrum, happens on any day that ends with a “y.” It did not have an option for being unable to concentrate under certain lighting, against certain background noise, or in the presence of strong smells. It didn’t have a section for me to account for the loneliness of being unable to be one’s true self at any time other than when alone, nor the significant personal cost associated with learning that my true self was not welcome in neurotypical society and that even my best efforts at hiding it occasionally failed and cost me friends, social groups, or jobs.

My life is pockmarked by incidents where I tried to hide my true self from everyone and still wound up unintentionally hurting someone in such a way that they “couldn’t believe” I didn’t realize it–even if they knew I was autistic. There’s nowhere on the form to put the devastation entailed in repeating this experience at regular intervals throughout one’s life, particularly when unaccompanied by any explanation as to what exactly I had said or done that was so hurtful to begin with, and despite increasingly advanced mental workarounds to try to prevent it.

I made copies of the form to practice with before finally filling out the final version, in ink, by hand, which is the only way they will accept it. I scanned the finished project onto my laptop for posterity and then dropped it off at the post office first thing the next morning, three days before the cutoff.

Yesterday, I received another form letter, mailed the day after the cutoff, telling me they still had not received my response and would decide my case on the initial information only if I did not call them “immediately.” And by immediately, they meant only on a weekday between 8:30 and 3:30 PM, which to a literalist like me was a rather glaring misuse of the word. (How about “as soon as possible”?) It came in the mail Friday, I opened it Friday evening, and Monday is a federal holiday, so immediately is not actually going to be all that immediate.

I understand that this may be a result of crossed wires and I will probably be able to clear it up once I do call them on the phone. But the irony of having to speak on the phone while hiding my autism in order to get disability assistance because of my autism loomed large. And of course, there wasn’t a place on the form for me to describe how difficult even something as simple as a phone call was for me.

The letter felt like a punch in the gut. I put the most personal details of my life on that form and you don’t even know what happened to it?

Being autistic and “high”-functioning means being invisible. You tell people you are autistic and they don’t believe you. You try to get work accommodations and have to lay bare your psychological history and even then, you’re still held to neurotypical standards of behavior and penalized when your autism prevents you from meeting them. People tell you that you don’t “look” autistic, or that they “never would have known” you were autistic, validating the fake self you have to put on to make them comfortable at the expense of the real one that you were bullied and ostracized for growing up.

Efforts to explain what it’s like to have autism are met by neurotypicals erroneously equating them with their own experiences of not “liking” crowded elevators or loud music in a store. Instead of exerting themselves to try to conceive of what it is like to be completely debilitated by things that are simply annoying to non-autistic people, they nullify them by assuming such experiences are just like their own.

For the record, being a high-functioning autistic adult is exhausting, demoralizing, and incredibly lonely. No matter how hard I tried, how forcefully I applied myself, I simply could not maintain it over the long term, and have had to quit every part- and full-time job I’ve ever had because I was completely depleted and couldn’t keep it up any more, and had started upsetting my co-workers because of my “tone” and “attitude” and was about to be fired anyway. These were followed by periods of complete mental and physical exhaustion, and sometimes even physical illness, that lasted anywhere from a couple of weeks to several months.

Nowhere on the form, even on the few pages set aside for my occupational history, was there a box to check or an option to respond to that even came close to allowing me explain this situation and why it has rendered me unable to support myself. I had to relegate it to the “supplemental information” section, which was supposed to be for expanding on answers to existing questions, not answering questions they hadn’t asked. (I used it for the latter purpose anyway.)

I was bracing myself for a denial that I was going to have to appeal. What I was not prepared for was a negation of the entire experience: “As you have not responded…”

I had responded, despite being forced to do so on a form that refused to concede that my type of disability existed, despite having to expose personal details about self care that I have never spoken about to anyone, despite having shave off parts of my disability square peg to fit into the exclusively round holes available.

I’ve been fighting and fighting for my autism to be acknowledged, if not understood. And getting that letter felt like deja vu; my autism isn’t that big a deal, someone who looks like me can’t really be autistic, and the challenges I describe aren’t all that insurmountable. I have to bend over backwards to learn and project how neurotypical people think, speak, and act, and my reward for the amount of effort this takes is to be dismissed?

I am so angry, and I am angry at everyone. I am angry at every kid that ever bullied me, at every co-worker that took something innocuous personally, at every friend I’ve lost because of a misunderstanding, at every single supervisor or supposed friend who told me I had to fix my tone or my attitude because “people” didn’t want to be around me any more.

I AM FIXING IT. You have no f—ing idea what I would look and sound like if I didn’t, and how vastly different that would be, and how it feels to have to hide who you really are ALL THE TIME. You have no f—ing idea how much it hurts to know I’ve hurt someone in such a way that I am deemed unforgivable without even knowing what I did. Because my intentions don’t matter. Only the results matter; believe me, I know. The fact that I keep this up because I want more than anything not to hurt people, and that it happens anyway and there’s nothing I can do about it, does not matter at all.

And I have to live with it. I have to live with being that person you think is so callous and selfish. I have to live in constant danger of being misunderstood and shut out, and I work ten times as hard as you to try to keep it from happening, and only manage to make it less frequent; it never completely goes away.

And it hurts, on a level so deep I can’t even describe it. I don’t want to be this way. But I’m stuck. I’m stuck overcompensating and failing. I’m stuck being the asshole, the bitch, the unfeeling, uncaring, self-centered sociopath who doesn’t deserve to belong anywhere, or to have a job or friends. And all of this turmoil is invisible because, you know, I don’t “look” autistic.

I just want to be seen. You don’t have to understand what it’s like to be me if you would just accept that it is a reality so different from your own that you may never fully appreciate it. I just want to be accepted for who I am, for what I do, for what I go through to protect your precious sensitivities.

And it feels like I never will.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , , | 3 Comments

how things are

A photo of a warning sign that reads "DANGER, HARD HAT PROTECTION REQUIRED"

Proceed at your own risk

I’m in the process of uncovering the emotional underpinnings of the mechanisms I’ve internalized to disguise my autistic self. Specifically, I’m examining those I use to keep from inadvertently upsetting, insulting, or otherwise hurting the people around me.

Although my social troubles began early, it wasn’t until I was around 9 years old that I became aware that my default mode of speaking and acting was somewhere between off-putting and repulsive. I applied myself to trying to figure it out, even once tentatively asking Momma Ape if everyone could read minds except me (she said no), but to no avail. I tried to act like people on TV and in movies, but the results were no better.

I hopped from grade school to grade school under the dubious honor of being “gifted,” but each new peer experience was a repeat of the previous one. I could make friends, but not keep them. I had a new “best” friend every few months. I’d find myself next to a girl standing in line or sitting on a school bus, we’d strike up a conversation, she would like my sense of humor, and we’d start hanging out.

And then, a few weeks later, we’d stop. She would start avoiding me wherever possible. And I would have absolutely no idea why.

This cycle repeated itself through the rest of grade school, and by junior high, the bullying and ostracism had begun in earnest. My situation was worsened by a complete lack of hand-eye coordination (frequent in high-functioning autistics) rendering me useless at anything that involved a ball; according to my peers, I had absolutely no redeeming qualities whatsoever. I remember I disliked these realities, but couldn’t seem to do anything about them and mostly accepted that this was just how things were. And I told no-one about my situation, counselors, parents, or otherwise, for fear someone would attempt to intervene and make things worse.

In high school, I found a small collection of girls to hang out with. They smoked, drank, and went to parties. I did none of these things, but they seemed to tolerate me. I say “seemed” because I found out, midway through my junior year, that they vilified me behind my back and complained endlessly about how awful it was to be friends with me.

In college, looking forward to a fresh start, I bounced around a few different fringe groups. I usually fit in at first, but sooner or later, I’d find myself abandoned again. Occasionally, some kind soul from the group would pull me aside and say one of the following things: either I had hurt someone so deeply that he or she couldn’t comprehend that I was unaware of it, or I had turned off an entire group of people such that no-one wanted to hang out with me any more.

And each time, I would be completely taken aback. Until it was brought to my attention, I’d had no idea that what I’d said or done was hurtful. Once I was made aware, the pain and self-loathing were indescribable, because I couldn’t figure out why I hadn’t anticipated such a consequence, and was horrified by all the other times I must have hurt someone similarly that had gone unreported.

By my early twenties, I had decided that I couldn’t keep going the way I had been. I resolved to start acting like a different person in public (since I couldn’t be myself) and do my best to mimic what I had begun to realize was “acceptable” speech and behavior.

I threw myself into the work, but it was a long time before it felt (or looked, probably) natural. I mastered the basics in the first few years, and as time wore on, grew more and more adept, developing a phalanx of complex and multi-layered strategies to apply depending on the situation. Now, my mental library of appropriateness is substantial and can be executed in near real-time. Such mechanisms require a significant cognitive and energetic investment, and I can’t improvise well and still guess wrong occasionally, but the lengths of time between the social crises described above grew from months to years. I finally started being able to have relationships with my peers.

I have only recently come to appreciate the sheer volume and relentlessness of negative feedback I endured as a young person when being my true self. I was not aware that I was internalizing it at the time, but I do know that by my thirties, I had convinced myself that I was a bad person, possibly a sociopath, for not being able to see the social and emotional milieu the rest of the world operated in. My instincts, such as they were, were invariably wrong. Experience had shown that I had to rely on my intellect to cultivate and maintain relationships with other people.

There was no talk of autism at this point; I did not even know that high-functioning autism existed for another few years. When I did learn about it, and start to suspect I might be on the spectrum, however, it seemed irrelevant. Autistic or not, what was inside me was significantly different from what was inside everyone else, and if I wanted to have any social life at all, I had to behave in direct opposition to it.

My thought process was, and still is, that deep down, there is something missing inside me, and that I insult, upset, and hurt people without knowing it, and thus have to maintain constant vigilance over every aspect of my speech and behavior to ensure that doesn’t happen, even in things like text messages.

I have to think of myself as inherently wrong to make sure I say and do right things. This extends to everything from small talk and facial expressions to physical mannerisms, all of which have been smoothed, modulated, made more ambiguous, or done away with (in public, at least) altogether. Every single component of my personality, large and small and from the ground up, is based off an internal certainty that my natural self is at best unappealing and at worst antisocial.

And from my perspective, this manner of thinking, as emotionally costly as it might be, has enabled the life I now enjoy. I have many friends and a significant other. My classmates are fond of me. People in public no longer stare at me like I come from another planet as soon as I start to speak. I have cultivated relationships with everyone from professors to pharmacy staff to groundskeepers, all of whom seem (I can never be sure) to find me friendly and engaging. I am able to completely hide my autism, or in my mind, my wrongness, from those around me. Although it’s taken upwards of twenty years, I have all but perfected it.

But it will never be truly perfect. At the last animal hospital I worked, a fellow nurse I had been close to for over a year suddenly started avoiding me. I tried to pull her aside to talk about it, but she was deeply angry and refused to speak to me; I could not convince her to tell me what was going on. I left the hospital to pursue a different career path a couple of months later. I never found out what I had done to upset her. This happened in 2016; I was 43 years old.

This is my reality. Left unguarded, I hurt people. The elaborate schematic of a normal person I construct and manage when I step out my front door is built around making sure I don’t hurt people, along with the knowledge that it is only an approximation of a good person and remains fallible. And for that reason, I don’t dare turn it off around anyone save those I’m closest to.

And when I say I don’t dare, that is exactly what I mean. The consequences of failure are enormously painful, and even though failures are now few and far between, the mere threat of them more than justifies the status quo. I tell myself this is the person I would have been if I weren’t autistic, and while it is probably unfair that I have to invest so much to portray it, this is how things are and I don’t have the energy to waste wishing it were otherwise.

I am terrified that if I try to alter these well-worn thought processes in any way, things will go back to the way they were before I learned them. That I will be disliked, misunderstood, and ostracized. And I will do anything–everything–in my power to keep that from happening, no matter the cost.

I’ve realized I’m still not convinced there’s a good person inside of me. There’s a person who wants to be good, and who does a pretty good job of acting that way, but I know that at the deepest level, it’s not who I really am. And I walk around knowing that who I really am will never be acceptable to most people, with a deep sadness inside of me because of it.

This sadness is compounded when I try to explain it to someone and they respond that I should stop “wasting” so much energy on it, demonstrating a patent unawareness not only of the depth and scope of what I am doing, but what I would look and sound like if I weren’t doing it. I’m scared, with good reason, of what would happen if I showed my true self to any but the three people I am close enough to for them to not mind my abrasiveness, my lack of emotionality, and my seeming disinterest in their day-to-day affairs.

For many friends, I lie and tell them I don’t have to hide who am around them to make them feel better–even though I do. Because they think they want me to be myself, but their lack of knowledge about autism leaves them ill-prepared for how radically different my autistic self is from the person they know.

My insides, good or bad, are not like everyone else’s. I’ve built an incredibly complex structure of mechanisms to hide it. I feel I’m not who I was supposed to be, and that it is my responsibility to make up for the lack. It is a lot of mental work and I often wish it wasn’t and wonder how much more I could have accomplished if I didn’t have to do it.

But I don’t know any other way to do it, I don’t dare not do it and I don’t see a way out. And that’s just how things are.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , | 2 Comments