how things are

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 , , , , | Leave a comment

don’t touch my bar

Woman high jumping

How instructors accommodate disability in post-secondary classrooms is an impassioned interest of mine. At a recent conference, I attended a talk discussing incidence and coping strategies of neurodivergence in college students. This category included autism, mental illnesses such as bipolar disorder, ADHD, and anxiety.

Yes, I said anxiety. I’ll get to that in a moment.

However, the study sample was limited to students with anxiety and ADHD. No autism or mental disorders were represented. That means that the entire “neurodivergent” sample did not have a single participant with autism.

My anger all but eclipsed my composure, a composure that is already under duress even in the best of circumstances due to my autism. I wanted to interrupt the talk and tell the presenter in no uncertain terms how entirely inappropriate the study sample was, and that even clinical levels of anxiety are nothing compared to those of autism, which exerts significant and unrelenting pressure on a level few non-autistics can conceive of every moment we are in public.

Instead, I spent the rest of the talk trying to manage my anger and figure out how to communicate to the researcher that the study sample was flawed (“might need expansion”) without sounding like a complete asshole. I’m not sure if I succeeded, or if I was sufficiently ambiguous, but getting to the end of a public experience with my dignity more or less intact is a win if you have autism, and no-one ran away from me afterwards.

I understand that anxiety can be crippling. However, to suggest this in any way approaches the isolating experience of having autism is insulting to every single functional autistic struggling to hide their neurodivergence from their neurotypical–anxious or otherwise–peers.

I’m willing to allow that mental illness could be considered neurodivergence. But anxiety? Really? Does that mean depression, too? Because you do realize that would comprise nearly half of the U.S. population.

Anxiety (and mental illness, ADHD, and depression) can be managed, with medications, and/or with cognitive/applied behavioral therapy. These strategies are of significantly diminished utility for those with autism. No matter how adept we become at hiding our autism from others and compensating for our thoroughly atypical neurological experiences, we will always be autistic.

We will always have to work extremely hard to force our brains into a facsimile of central coherence and executive functioning. We will always be surrounded by people who communicate with one another in a manner that seems almost telepathic and that we can only ever to pretend to understand, at a high cognitive cost with varying degrees of success and for limited amounts of time. We will always have to fight to manage our responses to the sensory assault of the natural environment every time we leave our homes.

You can, even if only for brief periods, make anxiety go away. Autism, however, is a permanent state of being, and if we don’t look autistic, it’s because we are accomplished actors with a considerable volume of experience over a considerable amount of time (usually counted in decades) accompanied by advanced social communication workarounds. If someone says they are autistic, rather than minimizing it by comparing it to your narrow neurotypical experience and saying they don’t “look” autistic,  some appreciation as to the enormous amount of effort being expended not to creep you out or piss you off would be a bit more appropriate.

Those with anxiety are nonetheless able to relate to other [sic] neurotypicals socially, mentally, and emotionally. However different the environment may feel to them, the fundamentals of their brain physiology are the same as those of other non-autistics. As such, while anxiety may be a disability for which special accommodations are required, and I do not intend this post to suggest otherwise, lumping it in with autism represents a complete lack of perception as to what having autism entails. It also erroneously implies that the anxiety brought on by being autistic in a neurotypical world is akin to that felt by anxious neurotypicals, another gross underestimation of the lived realities of autistics.

I refuse to cede neurodivergent ground to those with emotional and biochemical alterations. Neurodivergent means that one’s neurophysiology is completely, bottom-up different from that of normal individuals. Anxiety, depression, and even ADHD, do not clear that bar.

Until you have experienced living an existence that feels thoroughly removed from that of everyone around you at the most basic level, you do not know what anxiety is. Until you frequently stare at cartoons, slogans, and headlines, unable to parse them out, you do not know what anxiety is. Until your brain has been hijacked by a flickering light or a rattling fan, you do not know what anxiety is. Until someone tells you that you insulted someone and disbelieves you when you say honestly that you didn’t know, and until this experience is repeated at regular intervals throughout your life, you do not know what anxiety is. Until you have had a meltdown in public, more than once, you do not know what anxiety is.

Anxiety is a real psychological disorder. But it is not neurodivergence. It is nothing like neurodivergence. It is an inappropriately managed (biochemically or otherwise), but natural, neurotypical state.

We’ll be keeping the bar right where it is, thanks.

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

see me

This past semester, my final project was a paper that explored the interface among autistic media portrayals, stereotypes, disability laws, and lived experiences. I discovered that I am not unique in the amount of effort I expend to appear neurotypical. I discovered other autistics exert themselves similarly, and most importantly, at a similar cost.

This knowledge, as unsurprising as it may seem, made an impact, and the after effects are still playing out. On the positive side, it presented an avenue through which to accept myself as I am. It explained why my repeated attempts at neurotypical employment had failed so completely, why I run down so easily in public settings, why it takes me so long to recover from overexertion. On the negative side, it was the final nail in the coffin of my attempts to have anything approaching a neurotypical life.

I am an autistic capable of “passing” as neurotypical in a way some would refer to as “high”-functioning. However, because of the cognitive load entailed in maintaining a neurotypical appearance, and the fact that there will always be situations for which I am ill-equipped despite my best efforts, I exist in an unrecognized gap between neurotypical and autistic that does not feel high-functioning in any way. I can appear high-functioning for short periods of time; longer periods result in attenuating efficacy.

Worse, once I become depleted, I have to remove myself from the situation and place myself in a low-stimulus environment to reload. If I continue to push myself, I will suffer a psychological, and eventually physical, breakdown from which I will need many days to recover. “High-functioning” suggests that being in a neurotypical environment is easier for me than for other autistics. This does not accurately reflect my experience. I consider myself a verbal autistic, not a high-functioning one. My supposed functionality varies widely from situation to situation and day to day, and sometimes even hour to hour.

“the autistic stereotype, of a gifted individual with no social skills whose peers gradually adapt to him, does not exist”

The outside environment is, and will always be, mentally and psychologically taxing for me, and expecting myself to function as a neurotypical (NT) for any length of time in that environment is an experiment doomed to failure (which I nonetheless conducted, always with the same ultimate result, time after time after time over the past several years). So it would seem long past time, then, to find a way to change the standard by which verbal autistics measure themselves. We can hide our autism from others, but this does not change the fundamental neurodivergence behind the mask. I now know this and have read primary research data that confirms it.

Accepting it for myself, however, remains a work in progress. Accepted or not, though, this is my reality. Or, I should say, this is our reality. Before I discovered how common compensation was among verbal autistics, I felt as though I were alone, isolated from both NTs and non-verbal autistics, too high-functioning to be considered disabled, but not high-functioning enough to compensate for the fundamental neurodivergence of my lived experience. The handful of NTs that are able to sympathize, if not empathize, with my condition comprises Momma Ape, Poppa Ape, my sister (TNC Ape), my significant other (Captain Ape), and a couple of my closest friends, one of whom has known me since college (and likes me anyway) and another with an adult daughter on the spectrum who “passes,” as I do.

None of them are autistic themselves. They understand that I perceive the world differently, but the breadth and magnitude of this difference is impossible to adequately express.

However, I am not alone in this functional limbo. There are a lot of us who, having ventured off of the isolating islands of our autism, are trying to reach the shore of neurotypical functioning, and we are battered by unpredictable waves of stimuli as we struggle to bring ourselves closer in. Some of us, like me, are able to plant our feet close enough to the shore to engage with our neurotypical peers and withstand the breakers, if only for brief spans of time. Others are unable, or perhaps unwilling, to expend the amount of energy required to maintain that position and remain farther away in calmer waters, a choice that is easier, but lonelier, as well.

Despite the fact that many online communities of us have sprung up, the invisibility of my autism and that of others like me renders each of us very much alone in our battles with the tides. NTs are unaware of the amount of water-treading and wave-jumping required to interact with them. This is most noticeable in the workplace, where we encounter what I have termed the “Autistic Paradox,” wherein we are too autistic to be able to function effectively in most work environments, but too high-functioning to appear to need accommodations. As a result, autistics nearly always burn out, unable to obtain reasonable accommodations and unable to meet neurotypical expectations over prolonged periods.

“the autistic stereotype as a set of special quirks and talents afflicting an otherwise normal person must be dismantled”

To normal people, we do not “look” autistic, or what society thinks of as autistic. The main reason for this is the pervasive autistic stereotype that originated from the 1990 film Rain Man. Thanks to Dustin Hoffman, in media and film, “functioning” autistics are men with savant-like abilities and social deficits. However, the autistic stereotype, of a gifted individual with no social skills whose peers gradually adapt to him, does not exist. A vanishingly small number of autistics are savants, and savants and non-savants alike are equally hampered by their autism in ways inconceivable to a neurotypical person. Because most autistics who participate in society are only able to do so by hiding their autism, the number of us out there, and the challenges we face, are invisible to all but a few non-autistic people.

This cannot continue. Something has to be done. What we go through must be made visible. The work we put in, and how much it costs us, must be made visible. Workplace accommodations must be expanded include accommodations for those with the sensory processing and social challenges autistics face. Our neurotypical peers must understand that the social language they take for granted is a foreign language to us, and the environment that is so comfortable to them is overwhelming to us.

In my paper, I called for autism sensitivity training as a part of employee onboarding, just as sensitivity training around other issues like bullying and sexual harassment is now a part of orientation at many workplaces. Stereotypes about autism are preventing NTs from understanding that to us, the world is jumbled assortment of sights, sounds, and smells wherein nothing is organized in ways we understand, and that in this environment, everyone, even transplants from other countries and cultures, communicates with one another on a level we have so little access to that it seems almost telepathic.

This challenge is compounded by having to navigate it through an extraordinarily high level of stimuli. Imagine every time you step outside, you enter an amusement park on a busy summer day. Imagine the noise level, the smell, the closeness and density of the surrounding people, how loud their conversations are, the children shrieking and yelling, the aggressive cacophony of heavy equipment like roller coasters and spinners. Now imagine being physiologically incapable of tuning any of it out.

That is what the outside environment is like to us. The energy expended to pass as neurotypical is in addition to that we have to invest to manage the distraction-riddled milieu in which we are forced to conduct such a performance. When we leave our homes, we don’t just have to make ourselves look normal to NTs; we also place ourselves in the direct path of an unfiltered fire hose of incoming information from which we must pick out the few randomly oriented drops necessary for us to go about our business while trying to shut out, or at least protect ourselves from, the rest.

NTs need to be made aware of how difficult their world is to be in for neurodivergent individuals in order to better understand what accommodations we need. Importantly, this means that the autistic stereotype as a set of special quirks and talents afflicting an otherwise normal person must be dismantled. Autism is not a set of traits or behaviors overlaid on a neurotypical human being. It is a mental, emotional, physical, and physiological experience of reality that is fundamentally different from that of others, necessitating a broad array of coping mechanisms that remain largely out of view of the public.

“The reality is that verbal autistics like myself appear normal on the outside and are functionally different on the inside.”

I have yet to see a single autistic on video or film whose portrayal is faithful to the mental strain and exhaustion of my public existence. The costs associated with being out in society are never accounted for. My lived experience of autism is, in fact, the direct inverse of these portrayals. The stereotype suggests someone functionally different on the outside but normal on the inside. The reality is, however, that verbal autistics like myself, savants or otherwise, appear normal on the outside and are functionally different on the inside.

That is what I want people to see. I, with my engaging manner and seeming social adeptness, I am what autism really looks like. I will smile when I meet you, look at your face, shake your hand warmly, commiserate with you about traffic or the weather or some sports team or another, and the constant and considerable cognitive investment required to maintain this performance and stay focused on what you are saying will not be apparent. I won’t be picking at my skin or chewing my tongue (my personal stims) or avoiding eye contact or speaking in a strange tone of voice.

Inside, I am expending an enormous amount of energy to look and sound like you even though I am different from you at nearly every imaginable level. Remember this. Remember how the world feels to a person like me while I’m doing it. This is what autism looks like. This is what it is.

See me.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , , , , | 1 Comment

lucky

antique-close-up-fruits-699779

First, my apologies for being off the grid for a while. Big Daddy Ape once told me never to spoil an apology with an excuse, so I won’t.

Earlier this year, maybe three or four months ago, I officially came off of all prescription pain medication with the exception of a single anti-inflammatory. My pain started to creep back up in July, but last year at this time, the same thing happened and an epidural cortisone injection shut it down, and I was due for another. I got one a few weeks before I went on vacation.

But it did nothing.

By my second day of vacation, two things had become clear. The first was that my pain was back. The second was that I was not the same person that greeted it the last time.

By sheer factor of being on vacation and not having any obligations, I more or less kept my discomfort at a dull roar without the requisite meds, which I no longer had; pain poked up and ran me down a couple of times, but other than that, it was manageable. When I got home, I begrudgingly made an appointment with the sainted health care practice that has overseen my pain management since its first appearance in 2013 to request the necessary anesthetics and was provided them without further ado. All at lower levels–the pain is not as severe as it once was–but it’s more or less the same regimen and I slipped right back into it.

I’m lucky.

Of course, there are a couple of caveats. One is that outside a spike here and there, the pain is much, much less severe than it was before. That’s the most important thing. Dealing with a daily pain level of a 6 or 7 as opposed to a 9 or 10 isn’t just a different animal, it’s from a different planet. And I know that, and there’s a lot of gratitude surrounding that. The other is that now that I work from home and am in grad school, only taking a couple of classes at a time, I can manage my activities to reflect my daily pain digit. Just being able to do that and knowing I don’t have to go anywhere or be anywhere if I don’t think I can handle it takes a lot of the edge off.

Unlike before, I have a full coping apparatus already in place. I went back to the same physical therapy practice I patronized before, appreciating the vetting I had conducted to find it six years ago. I added but a single provider to the existing phalanx to address the new purported culprit, a herniated disc in my neck. I still keep in touch with my pain mentor, too, and despite the mentor-mentee dynamic, which I insisted on cultivating and she agreed to continue to participate in, we are now close, sharing that set of specific denotations for words and things that close friends have with one another. Most important, she did not shower me with sympathy; I think her response to the return of my albatross was “well, hell.” For which I was immensely thankful. (And yes, the butterfly gauntlet is back, but I’ll save that rant for another post.)

And, I know how my body responds to these medications. The last time, the combination of medication, pain, and fear laid waste to my appetite and turned my GI system upside down; I dropped twenty pounds off of an already normally-weighted, five-foot-three-ish frame in a couple of months. (Oh, don’t worry, it’s all back and then some.) This time, I was on notice that this might happen and have been careful to keep my appetite, or at least my eating habits, more or less intact. Also, I was able to anticipate the effects on my GI system ahead of time and secure the proper medication to avert them right away, instead of playing catch-up, red-queen-style, running in place to keep an already deplorable situation from getting worse.

Most noticeably, the debilitating anxiety of having idiopathic pain is absent. Maybe I’ve just run out of worry for it, having expended so much already. Or I don’t feel like walking around in such an energy-sapping state of mind. Or I’m inured to it. Being in an extreme level of pain for an extended period of time changes the way you think about pain, both consciously and subconsciously. Pain evolved as an alert system that we are getting damaged and need to take steps to address it. But when pain is constant and can’t be allayed, the alarm has to be dismantled so that we can continue to function. Being in a constant state of alertness is exhausting and, after a certain period of time, pointless. This time around, the alarm pinged faintly for a day or two and gave up. Couldn’t be bothered. Other stuff to do. It’s like pain-lite. All of the same stuff, but less sugar, or baggage, if you will. Importantly, less flavor; my daily pain level is pretty manageable with medications, a significant departure from my last experience.

So when my pain spiked the second day of vacation and I insisted on helping Momma Ape unpack despite it, my family was a little unsure how to respond. Shouldn’t you be resting?

I recently started a kick-boxing workout program. Friends aware of my pain are concerned, cautiously offering sentiments like are you sure that’s a good idea?

Well you know what? I like being helpful and I like kick-boxing. I’m too uncoordinated, and my reflexes are too slow, to be any good at the latter, but I like hitting things. (Kind of always have, now that I think about it.) Critically, activity hasn’t been associated with an increase in pain. More critically, I don’t want to stop doing things. I don’t want to give pain the wheel it summarily yanked from me the first time around. This much pain would have done that before, but I have a different scale now and on the new scale, this level doesn’t qualify for a driver’s license.

I’m not saying that people in debilitating pain should take up kick-boxing. (Um, please don’t.) There are types of pain that are severely exacerbated by specific activities. People with those types of pain should avoid those activities at all costs. But just like last time, the only thing that increases my pain is sitting in a chair (or a car) for an extended period of time, and that’s not really something you can adapt around. (Especially me, currently a grad student and working on a laptop for a living.) Other than that, my pain arrives or doesn’t irrespective of what I do or don’t do. So f*** it. If I want to hang out with Momma Ape or hit some things for a little while, why not?

I’m not afraid of the pain, any more. But it’s more than that. A tiny little part of me missed it and welcomes its return. It’s hard to write that out here, after the copious amount of text I spilled railing against it. But save a couple of days of self-indulgent pissing and wallowing, I’m fine. I just slipped back into my old routine like I had never stopped. Pain meds. Ice. Special seat and back cushions. Insurance-mandated-but-otherwise-pointless physical therapy. Requests for assistance with heavy objects.

It almost feels like a skill I’ve honed, dealing with pain. Like I’m good at it. And, as so often happens with skills we’ve mastered, I actually, dare I say, kind of like it. It felt like putting on an old but perfectly-fitting leather jacket. It feels so natural I barely notice the weight. And, I think it looks good on me. I have chronic pain. Incredibly, I missed saying that. It validates me in a way I can’t explain and don’t care to probe, at least, not at the moment.

So there. I said it. Wrote it, whatever. I like being in a moderate amount pain. (Er, “moderate” being the key component in that statement.)

Since the five-alarm pain fire subsided, somewhere around 2016 or thereabouts, there have been a couple of instances where I actually wished I had it back. I longed for the clarity, the framework of priorities it hung, the fences it erected. As an autistic, I’m somewhat agoraphobic. I like confines. I like being able to see and touch the walls. I feel safe in that environment. I am the world’s worst improviser; the number of possibilities is too overwhelming. Pain cuts that number down to a manageable size. I’m not saying I cultivated the return of pain, although I did stop mitigating my activities to work around it once it got below a 2. But since it’s shown up of its own accord, as far as I can tell, I’m happy to bring it in and give it a cup of coffee, like a long lost relative.

The experience of all-encompassing pain made me tougher. Before that happened, this much pain would have been pretty upsetting. Now, it’s meh. Is that all ya got?
I like being tough. I think it suits me. I hated being fragile. It tasted like acid; it felt like being captured in a net. This time around, the pain is like someone who used to bully me in grade school, came back into my life a mere shadow of her former self, and is no longer worth my time.

Pain used to threaten my sense of self, my future. But now, it focuses and clarifies them both. It gives me permission to manage my expectations and not feel guilty about not doing as much as I should, or enough. (Whatever “enough” is, which I still haven’t managed to pin down despite a couple of decades of supposed adulthood.)

I am enough, and the pain reaffirms it. Lucky, that’s what I am. I’m in a situation I’m well-equipped to handle and secretly missed. If that’s not luck, I don’t know what is.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , | 1 Comment

closed

Filip Kominik

Don’t expect people to remember you have autism or realize what it entails. Most people, even those you might consider colleagues or professionals who received an advanced education in an area like psychology or social work, will have forgotten about it ten seconds after you’ve finished telling them. Unless you get the letters “ASD” tattooed on your forehead (and perhaps not even then), if you “look” like a neurotypical (whatever that is), people will assume that you know everything there is to know about being one, and will not take kindly to your mistakes, however innocent they may be.

I’m a GTA (graduate teaching assistant; I know I don’t have to say “graduate” but I am still surprised that I am in graduate school and actually handling it). The other GTA [sic] and I hold office hours in a common area outside one of the professor’s offices, where a table and chairs have been conveniently set out. These chairs are cushioned and lime green in color. I point this out because most chairs on campus are neither of those things.

Other professors sometimes meet with this professor in her office during these same office hours. About two months ago, give or take, they were carrying on and laughing so loudly that I had to close their door. This was greeted with an additional peal of laughter.

I have worked in certain types of organizations where I have closed doors of executive’s offices so they may continue with non-public phone conversations, as a courtesy, so they didn’t have to get up. I was under the [mistaken] impression that there was nothing wrong with this behavior.

Why am I carrying about office doors, you might be wondering?

Today, when I arrived at office hours, the professor was having a conference with a student. I assumed, and may have even been correct in this assumption, that the student would not want a TA sitting at the table outside and listening to their conversation. So, silly me, I went over to close the door.

“What are you doing?” the professor demanded.

“Uhhh…”

What does it look like I’m doing?

“…I, um, thought you might like some privacy.”

“Leave it. You shouldn’t go around closing other people’s office doors.”

Really? And how the f*** am I supposed to know that? I’ve accumulated a great deal of knowledge about social conventions, but I missed the subsection on leaving office doors open.

Thoroughly humiliated, I stammered an apology and set up my laptop on the table to start working, although of course, I wound up writing this instead.

When I applied for this job, I was very upfront about my autism. I explained how it affected my thought and learning processes. I explained the context-free environment that ASDs find themselves in most of the time.

This particular professor, who was at that interview, has a Ph.D. in social work. She knows, or should know, all about autism. But instead of thinking, “hmm, someone with autism might not get this thing,” she shut me down, in front of a student, no less. And of course, I’m sure she thought nothing of it and has probably already forgotten about it, while I am still smarting from being berated for something I had no idea was wrong. Full stop, end of story.

She left shortly after the conference was over, leaving me no chance to explain myself, even if it had occurred to me to do so, which it didn’t in the short window of opportunity that presented itself.

I know I don’t get to control what people think of me. But the main reason I am open about my ASD is to increase awareness in non-autistics of what it is like to interact with an autistic, even one as seemingly capable as myself. (“Seemingly” being the key word in that sentence.) I had thought, for some reason, that mental health professionals would welcome this exposure, and maybe not even need to be reminded about it. What can I say? I’m an optimist.

OK, fail, so much for that plan.

I do not want to have a little chat with whomever it is about what autism entails every time my speech or behavior fails to meet neurotypical standards. Most of the time I’m not going to know because our social conventions preclude calling people out for failing to meet those standards, anyway. So I guess I should be grateful that the professor was “kind” enough to set me straight?

Except now, I have no rule. Some people don’t mind if you close their door, but it appears some people really, really do. Now I will have to ask every single time, which will be unnecessarily fussy and weird probably 99% of those times, because apparently, certain individuals are extremely sensitive about it. Great. Like people don’t already think I ask too many types of these questions anyway.

Just another day.

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eating my lunch

It was a simple story, testing the global coherence abilities of those on the spectrum. The story talked about a character wanting to decorate a bare wall. She goes to look for a painting, but can’t find one she likes. So she goes looking for a big clock.

Why was she looking for a clock? the test asks.

My brain says, “because she wanted a big clock,” or “to make up for not being able to find a painting.”

These are not the correct answers. The correct answer is “to decorate a bare wall.”

So here I am, reading the peer-reviewed article about this study, which discusses this test in fine-grained detail, fully aware of the parameters of the test and what the correct answer should be, and two incorrect ones pop into my head of their own volition anyway. Apparently, not only do I fail at global coherence, I fail spectacularly, even when trying not to. It is as though my brain willfully forgets anything not immediately and precisely related to whatever is right in front of me in any given moment, even if it was only a couple of sentences removed.

This is not what I’m supposed to be doing, by the way, writing a blog post. I’m supposed to be working on a literature review for a research proposal. But I’m stuck on the fact that I’ve been turning this big clock thing over and over in my head and it still doesn’t make sense. I just don’t get it. What does looking for a big clock have to do with looking for a painting? How did she get from painting to clock? It feels like there is a phrase missing, a piece of information that would explain the jump.

I realize, intellectually, that the only information necessary is found in the first sentence containing “decorate a bare wall,” but my brain is insisting that can’t be right because that phrase doesn’t have painting or clock in it. So how does a neurotypical (NT) know that it’s related? What am I missing?

And paradoxically, the more I think about it, the less sense it makes. It’s just an example, you might be thinking. It’s not a real person.

But that doesn’t really help. I don’t understand why that’s relevant, or why it would even come into the conversation in the first place. Are hypothetical people held to different standards than real ones? Why? What are the differences? And, more important, how do you know which is which?

It makes me wonder how I’ve ever managed to learn anything at all.

It’s a little frustrating to run up against these global coherence and ToM (theory of mind) tests in research articles, pop open their hoods, see what’s inside them and what they’re supposed to do, and still not pass them. I suppose I have no-one to blame but myself for running towards what makes me different from other people rather than away from it. I have to remind myself that I’m doing this in an effort to help NTs and autistics understand one another. So here goes:

Take the following sentences:

(A) She finished the rest of her lunch.
(B) She ate her sandwich.
(C) She opened her lunch bag.
(D) She threw the bag away.

To non-autistic people, these items are out of order, the correct order is obvious, and they probably rearranged them properly without really thinking about it; C, B, A, D.

To someone like me (a high-functioning woman with Asperger’s who appears normal in virtually every capacity), none of that is obvious. The statements seem totally unrelated, and the fact that it is simply because they are out of order (and that I put them that way, no less) just slips under the water without so much as a ripple. Worse, instead of noticing the wrong order and fixing it, my brain gets stuck trying to make the wrong order work.

This is how information appears to those on the autism spectrum most of the time; lists of apparently unrelated items which, if not provided in precise, temporal fashion, without any skipped steps or thoughts, we cannot make head or tail of. It’s only by taking all four phrases as a whole that the scene is revealed, and for whatever reason, our brains just don’t do that. It’s been termed “global precedence.” It occurs naturally in NTs, and we ASDs must fumble along without it.

The idea that the items might have been presented in the wrong order is only stumbled upon after overturning several other possibilities–if it occurs to us at all. This impairment in processing global phenomena is so persistent that even though I arranged the previous sequence of phrases out of order on purpose, with full knowledge of what the intended order was supposed to be, my brain remains stubbornly unwilling to rearrange them because of the order in which they’re presented.

The fact that there is no “she” and I created this entire exercise out of whole cloth just minutes ago is, unfortunately, of no use whatsoever. There it is on the page, and therefore it exists, and so does “she.” In fact, this “she” is now a real woman who opened her lunch bag after eating her lunch and threw it away, and I can’t figure out why. I’m thinking maybe she didn’t like what she packed for lunch and bought something else. Or maybe she forgot she brought lunch until after she ate.

If this sounds utterly ridiculous, well, welcome to my world. Ridiculousness is a part of the daily autistic experience. I think one of the reasons my anxiety is so persistent is that much of the world appears this off-balance to me much of the time. Very little makes sense. I’m just used to it.

The more I think about it, the more maddening it becomes. I feel like I ought to be able to teach myself to think differently, especially after all this time, but for whatever reason, there’s a gap between understanding what I’m supposed to be doing and simply being able to do it. It’s like driving from New York to California by way of Alaska. I mean, I’ll get there. (Two weeks after you, maybe, but dangit, I’ll get there.) But for whatever reason, I can’t just go straight from one to the other. That route is not one of the options my brain has to offer. (Luckily, I’m patient and tenacious; other people might have given up once they cleared Manitoba.)

Many times I think to myself that I just don’t want this. Yes, it’s important to me that others like myself are given every opportunity to function and work in a neurotypical environment, and I realize that my ability to see so clearly what others don’t is precisely what makes me so useful to the autistic community. But there is also a petulant little part of me that wishes that people would just say what they fricking mean and be explicit about their assumptions because having to guess all the time is unsettling, not to mention tiring. Even though I’ve learned to be a good guesser, I still don’t really know anything. It’s like studying another language but never actually assimilating it. I can communicate with neurotypicals, but my brain has to translate in order to do so; into autistic on the way in, and back into neurotypical on the way out.

It would be nice, every once in a while, if someone else made an effort to learn my language. It might be why I’ve learned enough Vietnamese to thank the woman who does my nails in her native language, and why I try to exchange pleasantries in Spanish with the my downstairs neighbor and her husband and son. I feel like I understand, even if only tangentially, what it’s like to be surrounded by people speaking a language you had to learn to understand.

Don’t get me wrong. Being an immigrant or other minority in this country is much harder than being a white, college-educated, native-English-speaking autistic; I am still awed by how much better my downstairs neighbor is at English than I will ever be at Spanish, and by how capable she appears and how effortless she makes her life seem.

Then again, I feel that way about most people. Another part of the daily autistic existence is frequently wondering how NTs know what they know. How they always just know what to do, what to say, how to act. I’ll never really know what it’s like to just “know” things.

But I will definitely say how much I like your new big clock, and how it livens up the room. I’ve learned that much. And that’s much better than knowing nothing at all.

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sound and fury

animal-animal-photography-barbaric-561870

At some point, this will end. Nothing lasts forever. It will stop. It will.

Yesterday, I sat through an hour and a half of torture. And I knew I had to write about it, even though there seemed no way to describe it that didn’t make me sound hysterical or crazy. So this is my attempt, for those on the spectrum like me who have trouble explaining such things, and for neurotypicals who have trouble understanding them.

It doesn’t happen as frequently as it did when I was a child, but every so often, a stimulus will overwhelm every single coping mechanism I’ve so painstakingly taught myself over the last twenty-odd years. I was at a friend’s birthday party a couple weekends ago and could not concentrate on a conversation because the smell of Doritos was so overpowering. I lost all ability to focus and had to walk away.

Yesterday, I endured a wretched ordeal that transformed a chunk of my afternoon into a hell from which I couldn’t escape, yet another experience that underscored that I am more than just your garden variety introvert.

And what was this horrific torture?

A voice.

Certain sounds cause physical pain to persons on the spectrum. For me, vocal fry is one of those sounds. Whether it be my awareness of how it is produced or the frequency of the sound waves themselves (or both), I simply cannot listen to it for any length of time without wanting to crawl out of my body.

For the uninitiated, vocal fry is the term for a specific style of speaking. The vocal cords are stretched tightly at the lowest pitch the speaker can produce to yield a thin, rough, atonal timbre. Experts have theorized that women do this to sound more masculine and thus be taken more seriously by their male peers, despite the fact that both men and women have reported finding the sound rather unpleasant.

What I wouldn’t give for it to be merely unpleasant, rather than producing a sensation similar to sand paper being rubbed on the back of my throat.

I was accompanying a class to a nonprofit, and in fact, I’d been looking forward to the field trip. But once the presentation began, the flat, harsh tone of the woman speaking was so distracting I couldn’t concentrate on what she was saying. Which was upsetting, because I was very interested in what she was saying; one of the reasons I’d accepted the teaching assistant position for this course was to work with the very people whose organization we were visiting.

I wanted so desperately to be able to simply absorb the information. I tried to take notes, but they were choppy, with large gaps; I kept losing the thread of the discussion. I couldn’t ignore the sound; I might as well have been a sitting next to a jackhammer. Today, my jaw is sore from having been clenched for ninety-plus minutes. My neck and shoulders ache from the rigid posture I froze in as my body tried to protect itself. It felt as though my skin was being peeled off, my whole body a scab debrided, raw flesh exposed to the air.

Finally, it was another woman’s turn to speak–and she employed the exact same vocal effect. In fact, all five women in the department used it, perhaps subconsciously reinforcing the choice among themselves. Every one of their voices was like acid poured in my ears. One was so gravelly that my verbal decoding failed utterly; I have no idea what her position entailed or why she was even there.

About halfway through, I despaired of being of any assistance to the students. I couldn’t get away from the pain the noise was causing me. I felt trapped and powerless. I thought about excusing myself, but was worried it would set a bad example. Even though both the students and professors know I have Asperger’s, it seemed impossible to explain why I needed to leave.

Yesterday was a success, I suppose, since I stuck out the entire presentation, but it left me traumatized and exhausted, and reminded me that there is this part of me that will never be fully managed. Lest I forget, my autism can still incapacitate me without warning. What if I were a speaker on a roundtable sitting next to that voice? On a call with an important client? Discussing an illness with a physician? What would I have done?

For people with an ASD, it takes a certain amount of energy to focus on the right components of our surroundings, or rather, to not focus on the ones we’re not supposed to pay attention to. I was frequently accused of not paying attention as a child, though I was certainly paying attention to something, albeit heaven knows what. At least as an adult, I know what I’m supposed to lock onto, and can exert myself to maintain that focus where necessary. Usually.

From time to time, like yesterday afternoon, I fail spectacularly. I react disproportionately to a certain sound, sight, or smell, and the rest of the world is just gone. I’m stuck, my brain is screaming, every fiber of my being is begging me to run away, and anything else I might want to be doing slips maddeningly out of reach.

Sometimes, I like my Asperger’s. I like my peculiar way of looking at the world, the divergent paths my thoughts take, and the unique perspective I have on human interaction. But sometimes, like yesterday, I would trade every last scrap of it to escape the cruel highjacking visited on me by whichever wayward neurons were activated when that woman began to speak.

We’re hooking up with the organization again next month to tour another facility. I don’t know what to do. Maybe I won’t be as sensitive that day? Sometimes second exposures are less dramatic. Then again, sometimes they’re exponentially worse. And I can’t simply avoid all women who speak this way; I’m sure women in positions of power everywhere utilize the technique, else why would we have a word for it or a body of research surrounding it? How am I supposed to avoid an entire generation of women? Most probably don’t even know they’re doing it. I could record it and play it back to them and they would wonder what I was making such a fuss about.

I just wrote a post about how introverts don’t need special treatment; I still don’t believe they do. But people on the spectrum? My hard line softens a bit on this one. Most of time I favor a suck-it-up mentality, but every once in a while, my autism pins me to the wall and I fervently wish I could file down the world’s edges.

Ear plugs, maybe? It’s not like I haven’t had to explain such eccentricities before. You don’t eat fruit? Are all your shoes too big? Why is there a bag of bubble wrap by the front seat of your car?I’m sure I could come up with some excuse, at least for the tour. But it’s not exactly a long term solution; I can’t wear them everywhere. Not to mention that the feeling of ear plugs in my ears can only be withstood for so long.

This is my life. These are the kinds of things I have to deal with while other people are going about their daily business. I wish I could do what they take for granted, just show up wherever and do whatever needed to be done without worrying that one of the fluorescent bulbs might start flickering and send me into a tailspin. I wish the act of leaving my home wasn’t fraught with uncertainty about what I might be exposed to. I wish I didn’t always need to know where the emergency exits are.

Would I still be me without the autism? When I read articles about potential treatments I wonder if I wouldn’t undergo one even if I could, for fear it might change an essential part of me. But how essential is it? Doesn’t it do more harm than good, more often than not? Wouldn’t I be better off without it?

Some days I think I just might be.

Crossposted at THE ASPERGIAN

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introversial

Mark Oppenheimer, in “How to raise an extroverted child in a world that loves introverts,” (Washington Post) claims that we operate in a society that values introversion over extroversion. He has the audacity to say that “there is definitely something self-serving, brilliantly so, in the militant introverts’ argument that they are superior — calmer, more patient, more compassionate — yet always vulnerable,” suggesting that introverts are conspiring to take over an unsuspecting extroverted society and mold the world to suit themselves.

Made-up issues are not helpful as a rule, and this one, with its egregious lack of grounding in reality, is worse than most. Extroverts are the ones who thrive in the modern world, a world that values putting yourself out there, being open to new experiences, and always looking for new connections and new opportunities. (In case you were wondering, these are not things which introverts tend to enjoy.) Suggesting that introverts are “brilliantly” self-serving in their supposed superiority implies a level of self-centeredness that even a narcissist would blush to admit. I hate to break it to Mr. Oppenheimer, but introverts do not think about extroverts, the world, or their relation to either of them to anywhere near this degree of depth.

The introverted stereotype Oppenheimer describes as “both special and especially oppressed…they have unique wisdom but also need unique care” may make for good copy, but it is pure fiction, probably sprung from television’s recent obsession with antisocial lead characters (see “The Good Doctor” or “House”). The real world has little use for reserved, non-social people. Introverts certainly do not think of themselves as possessing some special wisdom that extroverts could never achieve. That is all the food of Oppenheimer’s apparently overactive imagination, and seasoned with no small amount of petulance, I might add.

For the record, being introverted is not a disability you can claim reasonable accommodations for, nor is it something you can put on your resume alongside a preference for being interviewed over the phone. Our culture values socialization over solitude, friendliness over reticence, and fearlessness over caution, and suggesting otherwise is dismissive and insulting to introverts who struggle against their natural inclinations every day to fit themselves into said culture. The world does not “love” introverts. It fetishizes them. That is not the same thing.

Sometimes, people are duped into thinking that art reflects life. If that were the case, however, everyone would flip houses, doctors would never shave, and “introverted” men would frequently find themselves in situations they had to shoot their way out of. Media is not reality. Introverts are not delicate, magical creatures bent on taking over society.

In fact, all we really want is to be left alone. Thanks.

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two and one

mirror touchPhoto by Jenna Hamra

Normally, the holiday season fills me with a sense of joy, peace, and hope. I love everything about Christmas; the decorations, the traditions, the music, and especially the Christmas story. I very much relate to the idea of love and hope being born in the depths of winter. I arrive at the end of the year relieved and grateful, and excited for a fresh start.

I felt none of those things this year. I came around to decorating my home, something I usually go a little crazy doing, only after I decorated the office where I work and thought maybe I should try to coax myself into the holiday spirit by doing the apartment. I did all of the holiday things I normally do, playing hooky, getting my nails done, cooking and baking. I had a lovely holiday with my family and friends, restful, relaxing, fun, and drama-free. I couldn’t have asked for more. But through it all, a sadness lingered, a feeling of disconnect with how people treated me and what I saw in myself. I still see myself as unworthy, a child in grown-up clothes play-acting at being an adult. I still feel like the scared, confused little girl I was growing up, who no-one liked, who didn’t understand why no-one liked her.

But of course, I’m not that little girl. Intellectually, I know that I am a fully-realized, functional, mature human being. I know how to be a good friend, a good sister, a good aunt, a good daughter. Unlike many on the spectrum, I can move among my peers and co-workers with relative opacity, with no-one having any idea that I have Asperger’s, that what they see is not natural but an elaborate and now virtually automatic construction.

I no longer even really mind that it is a construction; rather, I am proud of it. I worked hard to learn to understand people and develop relationships with them over the last two decades, and I’m still trying, and learning and improving. I have come so far! But the dissonance persists. Everyone sees me as a whole person. Everyone, that is, except myself.

My therapist said that I have done such a good job of being useful that I doubt whether I would be desired otherwise. That I feel that if my friends and family didn’t need me around they wouldn’t want me around, and that need to try to figure out why that might be.

It’s terribly upsetting. Because it’s true. I don’t know if it is a result of misunderstanding and being misunderstood for so long, or if I came out of the box this way (or both). But I have been unable to accept the idea – the truth – that I am not a failure, or an accident, or a mistake. That I’m not a bad or mean or incompetent person. In fact, my loved ones are proud of me. Friends and co-workers are proud of me. Even strangers are proud of me. The only person not proud of me is me.

I can no longer blame this on my circumstances. The only negative feedback is coming from the inside, and no event occurring in my external life affects it. It doesn’t matter what I do, how much money I make, or how many obstacles I overcome; I keep waiting for that one final achievement to prove that I’m worthy of being called an adult, even though I don’t know what it would be, or how I would know it if it happened. (Maybe it’s already happened?) I have been treating my outward persona like an act, and only partially because of the effort that goes into projecting it. I’m stuck on the idea that it’s just the person I want to be, not the person I actually am.

But what is the difference, really, between thinking, feeling, and acting like someone, and being that person? I’ve lived as two people for so long, one inside and one outside, that I’ve taken the duality for granted. There’s who other people see, and there’s who I really am, and they are totally different, and that’s just how it is. No-one ever liked the “real” me when I was growing up, so why would they like it now?

Except, the girl no-one ever liked never actually existed. It is not who I was, and especially not who I am now. It was a misunderstanding, an assumption borne out of a lack of knowledge, on both sides, of my neurodivergence. I see that clearly in retrospect and my heart goes out to the little girl that lived through that experience. But I am grateful, too, because it made me who I am, someone who doesn’t tolerate the mistreatment of others. And I am incredibly grateful for my friends and family who saw past my Aspergers to the person underneath. And I have been able to use my experience to inform my interactions with others. I have learned the social language that allows all of us apes to get along and develop attachments to one another.

I did that. Because I wanted to. I wanted to have friends and be a friend, to like and love and enjoy being with other people, and be liked and loved and enjoyed by them. And if I made that effort, and still make that effort, doesn’t that count for something? If it’s who I want to be, and who I strive to be, then why isn’t it who I really am, inside as well as out?

It’s hard to let go of the dichotomy. It is a crutch that allows me to explain away my worst impulses, my shortcomings and failures, which all align with the conviction that I’m not “really” a good person, I just look like one. Because if I were a good person, there would be no excuse for ever acting like a bad one, even unintentionally. Since I’m a bad one, however, bad behavior is expected and all of my f***ing up makes sense. I’m still punishing myself for all the times I screwed up because of my Aspergers (or not), and constantly striving to balance it out with unrealistically high standards of behavior that I never attain because – wait for it – I’m not really a good person. Makes perfect sense, right? Nothing wrong with that line of thinking,

The advantage of writing out your thoughts is that you get to see how ridiculous they are.

Until now, I never entertained the possibility that I think and act and feel the way I do because it’s who I am. I haven’t learned how to act like someone. I have learned how to be someone. I have learned how to make the person on the outside match the one on the inside, not cover for it. A work in progress, of course, but more than adequate. Road tested and passed, lots of roads, lots of tests. It’s time to take myself off probation.

There aren’t two different TGAs. The dissonance is not inherent; it’s a coping mechanism developed years ago to shield me from the pain of my spectrum-related social challenges. But I don’t need it any more. The bones have healed and I can bear weight on this self. And I have proven that, time and again, over these years of pain and challenges and renewals.

I just need to believe it, deep down, and remember it in times of self-doubt, and work on convincing not just my head, but my heart, of the truth of it. Speaking of works in progress, this will be a big one. But today is the first day of a new year, and this year, my resolution is to stop thinking of myself as an elaborate fake and start thinking of myself as being the person my loved ones see. It’s terrifying (what if I’m wrong?). But it feels important, like the next step in my journey as an individual on the spectrum learning how to function in a neurotypical environment. Now that I’ve learned to behave like a socially habituated human, I need to learn to believe that’s what I am. Because it is.

Starting right now, this minute. I write it here so I can hold myself accountable. I am a good person, a worthy person, a real person. It will be hard to remember all the time, but the only way to get better is practice. So I will start practicing. Today.

Happy New Year.

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directions

donotenter

I had a doctor’s appointment last week. When I approached the office front door, there was a handwritten sign indicating the lobby was closed for repairs, and that I was to use the second entrance on the right.

I stared at it for a moment. From where I stood in the hallway, facing the door, the elevators were to my right. There were no other doors in that direction. I didn’t know where to go.

Patrick Moore reveals in his article “When Politeness is Fatal: Technical Communication and the Challenger Accident” (1992) that “association clues require that the speaker and hearer share some specific knowledge based on past mutual experience or some common element in their background” (Moore 1992). Interpersonal communication, then, is informed by shared knowledge.

I mean, yes, of course it is, but until I read the article, I’d never heard it articulated, nor had I thought about it in the context of my own experience. Here was yet another gem relating to interpersonal communication that had escaped me. No wonder people still occasionally look at me askance when I change the subject. The jump may make sense to me, but I’ve left our common ground behind and struck out on my own, and the necessary shared context is lost.

“Association clues require that the speaker and hearer share some specific knowledge based on some mutual experience or common element in their background.” – Patrick Moore

The miscommunication upon which Moore focuses is that which occurred on the fateful morning of the Challenger disaster, when the engineers at Rockwell International (the company that helped design and build the space shuttle), upon facing an array of superiors at NASA bent and determined to launch the damn shuttle after weeks of false starts and delays, underplayed their misgivings about the launch (due to a factor unrelated to its failure, which must be mentioned). Their ambiguity enabled NASA to presume that they were approving the launch, even though what the engineers had meant was exactly the opposite (Moore 1992).

Moore makes the argument that the unwillingness of the Rockwell VPs to be “impolite” (blunt) ultimately doomed the Challenger. From my perspective this seems unfair, since the Challenger launch failed for reasons unrelated to their concerns. And it seems a bit facile for him to make assumptions from his six-years-removed viewpoint; in hindsight, people are always sure they’d do the right thing, despite the fact that doing the right thing in the face of uncertainty and pressure is much harder than it sounds, as anyone who has succumbed to the bystander effect knows.

In my case as an ASD, I usually have the opposite problem from the Rockwell scientists. I have to build in vagueness to what I say and soften and dilute negative opinions when expressing them so people don’t think I am an odd, uncouth, blunt, rude, or otherwise unpleasant person. Apparently, normal people don’t ever express truly negative thoughts about anything. It’s almost like a game for me now, to see how ambiguous I can be and still get my message across. (If anyone is wondering, I still haven’t found the fence.)

When Moore quotes Brown and Levinson’s (1987) affirmation that “people cooperate (and assume each other’s cooperation) in maintaining face in an interaction, such cooperation being based on the mutual vulnerability of face,” he puts his finger on an important distinction between neurotypicals and ASDs, in that two NT people from the same culture assume a set of information that is appropriate to discuss accompanied by a shared conviction that to stray from this set would be embarrassing to one or both parties.

People on the autism spectrum, however, don’t have access to this set of information and are hampered in our ability to divine appropriateness. We do not assimilate it as children the way NT individuals do. We don’t construct the natural barriers that prevent people from stepping outside the bounds of this set, the very barriers that prevented the Rockwell engineers from laying down a blunt “no-go” to NASA. It isn’t that they didn’t want to. They simply couldn’t; to do so would have been an extreme breach of cultural protocol so deeply ingrained in NTs that it is virtually impossible for them to break.

With regards to avoiding detrimental communications in the future, Moore discusses standardizing language and creating more robust protections for whistle blowers, both of which are important and workable solutions. But I couldn’t help but consider whether or not installing individuals on the spectrum into positions where blunt transmission of information is critical might not be useful, even lifesaving. A lack of the shared politeness barriers that can make people with autism difficult to be around also endows them with an important advantage over their neurotypical peers in certain situations.

“installing individuals on the spectrum into positions where blunt transmission of information is critical could be lifesaving”

It’s an interesting thought exercise to wonder, if one of those Rockwell engineers had had Asperger’s, would his doubts about the safety of the launch been transmitted more directly? (Possibly to his detriment, of course, but one of the perks of being on the spectrum is that such consequences are rarely anticipated.) It has been suggested by some that autism is the selection of a particular set of traits that are suited to particular environments; might this not be one of those environments?

Back to the sign in the hallway. Since there weren’t any doors to my right, I turned to my left, and there was a second door, which was open. It was at that point that I realized that the open door was, in fact, the second door on the right, as one was walking down the hallway. But as I have mentioned often, those of us on the spectrum navigate a context-free world. Where the door might have been in reference to my position as I was walking down the hallway vanished soon as I stopped to read the sign. It’s a small but important difference. When asked whether I have a sense of direction, I like to say that when I turn, the whole world turns with me. I can’t visually orient myself in a space; it’s just one of those things my brain doesn’t do.

If I had written the sign, I would have drawn an arrow pointing in the correct direction and written, “Please use the second door,” without right or left designators, because I would have imagined myself in that very spot and wouldn’t have wanted someone like me to be confused. Using the arrow stamps out any potential for misinterpretation as to the direction.

And when misinterpretation is a matter of life or death, perhaps someone unconstrained by cultural associations is exactly the person you want doing the communicating.

Moore, P. 1992. “When Politeness is Fatal: Technical Communication and the Challenger Accident.” Journal of Business and Technical Communication. 6(3) 269-292. http://journals.sagepub.com/doi/abs/10.1177/1050651992006003001 (access restricted)
Brown, C. & Levinson S.C. 1987. Politeness: Some Universals in Language Usage. Cambridge:Cambridge University Press. Google Books
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