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

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you break it, you buy it

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

 

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

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

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

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

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 , , , , | 2 Comments

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