what happened

Photo of a woman looking at herself in the mirror, the reflection is blurred.

I swear I used to have more energy. I know I did. I never had as much as other people, but I definitely had more than I have had over the last decade or so (I’m in my late forties).

What happened?

I used to be able to work around 30 hours a week and still hang out with friends on the weekends. I used to be a performer, singing, doing community theater. I used to not need a lot of recharge time, maybe a day here and there by myself, easily accomplished with busy roommates with lives. I used to live with roommates, as in two or three, believe it or not, something that now seems completely out of reach.

What happened?

I used to be able to hang out with people for hours on end, to go to movies, to go out dancing, to have long conversations into the wee hours with peers about the nature of this or that.

What happened?

Because I can’t do any of that any more. I’m not even close. It seems like a whole other person, a whole other lifetime.

Starting in my mid-twenties, I started borrowing from my cognitive fuel tank to hide things about myself. I started using some of that energy it to decide what I was about to say, more and more of the time. Then I realized I had to change the way my face looked, so I siphoned off some more to invest in managing my facial expressions, too. The more I learned, the more complexity I added to these activities, to account for small differences in people, in situations, in location. Responses developed into full-fledged scripts. Facial expression management became more fine-tuned as I added more and more subtlety.

Once these efforts started to happen automatically, I became aware that my body language was also off, so I started paying attention to that, too, especially when I was listening to someone or interacting with a group. Head up. Don’t pick at your skin or chew the inside of your mouth. Don’t cross your arms if you don’t have to. Face your body towards the person speaking. Don’t slump in the chair or lean away from them.

A few years after that, I realized my natural eye contact inclinations were wrong, so I needed to pull more energy for that, too, making sure I looked at someone when they stopped talking instead of away from them, making sure that when I was looking at someone, I looked away every 3 to 5 seconds or so (and yes, I still do that, I still count seconds when someone is talking to make sure I don’t make them uncomfortable).

As my strategies grew more advanced, I started reaping noticeable social benefits. I stopped putting people off. At some point, I’m not sure when, I became someone people wanted to be around. I even became someone people genuinely liked. I became someone some people loved.

It felt like I had stepped into sunlight after a lifetime of being trapped in a cave. Finally, people didn’t cringe around me, or disappear after a few weeks or months. People wanted be with me, wanted to touch me, even. Asked about me if I wasn’t there. Cared about what I thought. Would go out of their way for me if I asked them to. Even better, sometimes, they would ask me to go out of my way for them. I loved the warmth. I finally felt human. Paradoxically, the more energy I invested in being someone else, the more people seemed to appreciate who I really was.

For neurotypical people to see the person I feel like on the inside, I have to translate it to make it apparent to them in ways they will understand. As I became more and more skilled at this, I reaped more and more social rewards for it, for being “authentic,” for being honest about certain imperfections and vulnerabilities, and even the fact that I was autistic and investing energy in hiding my autism. You’d think that this would have allowed me to use less energy, but those choices increased the cognitive load, deciding when to say what was in my head because it was OK in that particular situation, and when to fall back on a social script.

That’s where I am now. Being a person in our society, a likable, even lovable person, I have it down to a science. So much of this happens automatically that it actually feels kind of normal.

But that energy has to come from somewhere.

The spoon analogy, used a lot in psychology circles, contends that everyone starts the day with a certain number of spoons of energy. Those of us on the spectrum, or with other neurodivergencies, have to pull a few spoons from what would normally be expended on typical life things, like working, to manage their neurodivergence. When I started masking my autism, over twenty years ago, my strategies were pretty basic and didn’t require more than a single spoon or two.

Now, however, a lot, if not most, of my spoons go to my neurotypical performance and managing the stress of being on a neurotypical environment. It’s no wonder that I can’t work for more than a few hours a day. In fact, seen in this light, it’s amazing that I can work at all. As I have become more and more employable, and more and more sought after, I have less and less left in me to enjoy these privileges.

Was this the right way to go?

I used to think so. I used to think that no investment was too large if it rendered me able to have friends and be around people. Now, realizing that the investment required results in being overdrawn a lot of the time, I’m not so sure.

I have traveled too far down this path to go back and do it another way. But the cost has been exceedingly high, and now, my productivity is nowhere near what it used to be. Even as I have become more adept, and thus a better spokesperson, I am so limited by what I have to do to be that person that I may not be able to invest enough energy in doing the work that comes with it, that I want to do, that I have spent this energy in making possible.

I created the term “Autism Paradox” to describe the catch-22 autistics face in the workplace, where they have to choose between not hiding their autism and being under- or unemployed, or hiding their autism for the sake of their co-workers and not being able to get accommodations because they look too normal.

But there is another Autism Paradox, that is even more harmful, and I am in it. The amount of energy I have to expend to hide my autism prevents me from having enough left over to enjoy the fruits thereof, like a regular job, or extracurricular activities, or going out with friends.

How many of us are like me, having perfected the mask, but at such a great cost? I’m often praised for my ability to look normal. It seems effortless.

It is anything but. And for that reason, I feel like–no, I know–people don’t appreciate what it costs me to do it. And I have no idea how to undo it, or even if that’s possible.

But at least now, I know what happened.

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African American History Museum Whiteness Chart discussing aspects of White Culture

The African American History Museum was forced to take this down due to complaints about it. I have thus recreated it from pieces on the internet and am preserving it here for posterity. The image is downloadable.

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Photograph of chain-locked wire fencing with radiation warning signs

When I was planning this trip, I thought I was psychologically prepared for the higher-than-usual amount of change and uncertainty that accompanies a vacation to a new locale and involves a group of family members, two of which are capable teenagers but remain under our supervisory capacity. I had been making these assumptions based on a line of thinking that included having gone to the beach almost every year of my life. Not this beach, but beach is beach, right? I’d managed solo beach trips to novel beaches (pre-pandemic, of course) before with no trouble at all. How different could it be?

While I’m making a list of unfounded assumptions, I will add that I had been laboring under the delusion that my meltdowns were now predictable, manageable, and in many cases, even avoidable. I had even gone so far as to assume (laughably so, in retrospect) that this phenomenon was pandemic- and location-resistant. That the pandemic might have been unusually taxing, or that such management was predicated on my ability to manage my surroundings and was buttressed by psychological and, when necessary, physical support from Captain Ape, never entered my mind.

And then, last night, the third night in a row where our dinner plans ended in a partial or complete cluster, well, that delusion went down like a sand castle at high tide. The presences of my sister, my niece, and my niece’s boyfriend were all irrelevant. I walked into the apartment with food that I’d had to drive thirty-plus miles and 45 minutes out of my way and back to get, dropped it on the counter, and promptly lost my s***.

Screaming, cussing, and door slamming were soon followed by being crumpled in a ball on the bedroom floor sobbing. After a several minutes of this, I sent my sister out to eat dinner with the kids. I did not, could not, leave the bedroom for almost two hours. It took over a half an hour before I could even stop sobbing, and a long bath and a phone call with an autism-sympathetic friend to get myself pulled back together enough to be able to finally leave the bedroom and eat some of the food I’d gone to such lengths to get.

Now having been thoroughly humiliated in front of my far too wise and accepting niece, who appeared to take the entire incident in stride, and her boyfriend, a wonderful young man who may or may not have ever witnessed an otherwise capable adult disintegrate so completely, I have decided not to go down to the beach with everyone else today. My relief when they left the unit was palpable, but I am still barely holding myself together.

The stress of the last four months, coupled with what should have been completely expected snafus that always accompany a hastily planned vacation to a new place, have shredded my self-possession seemingly beyond repair. It is now halfway through the following day I am not much better.

I can’t stop crying. I miss my apartment, my cats, and my significant other terribly. It is beautiful here and now I wish I were back home where I could crawl into Captain Ape and he would hold me tightly enough to keep me from flying into pieces, which is how I feel right now, as though all my pieces are scattered everywhere and I don’t have the energy to go and get them all, never mind try to put them back together.

All this time, during the pandemic, the trip here, being here, I’ve been expending more and more mental energy to hold myself together, not realizing that the cost of such efforts had been increasing exponentially. Last night, the tank abruptly ran dry. And my erroneous assumption that I possessed strong enough faculties to conduct myself like an NT even in the most stressful of situations disintegrated right along with me.

This failure now looks utterly predictable and I am bouncing back and forth between berating myself for having the meltdown in front of the teenagers and berating myself for not seeing it coming. I could have leaned on my sister more and I didn’t. I saw myself running low and pretended that running low was not inevitably followed by running out. I figured I just needed to hang on through whatever happened and I would be OK.

But hanging on takes energy, and I didn’t have it. I forgot that I have to spend it hiding my autistic tendencies (interpreted as rudeness by NTs) from my niece and her companion even though they know me well. I forgot that I have spend more of it interacting with NTs to get things done. I forgot that being someplace that wasn’t familiar, no matter how pleasant, would be an additional drain.

As such, I forgot to build in opportunities to refuel. I decided, as I have so many times before, and always to my detriment, that I could function just as well here as I did at home. That I could be just as resilient as my non-autistic sister.

Fail, fail, and epic fail.

And that’s what I feel like. I feel like an epic failure. I should have known better, I do know better, and yet I managed to fail myself at every possible level. As I sit here trying to weave back together something amounting to a functional level of self-esteem, I find myself too humiliated and too ill-equipped to do so. I need to be alone and I need to be held very very tightly, a logistically problematic situation, to say the least.

My sister, a licensed social worker, just walked back into the unit to get some lunch and found me in this state. She took one look at me and, ahem, strongly suggested I take some of my anti-anxiety medication, something I have refused to do in the past. I don’t like benzos. I don’t trust myself to know when I need them–or more accurately, when I don’t need them, so my solution up to this point has been to ignore them completely, a solution that, in retrospect, now appears, ahem, misguided.

She was expecting pushback and had already launched into her pitch when I said yes. In the first self-care prioritizing decision I have made in I don’t know how long, I agreed with her assessment that I needed some help digging out of this rut I had worn myself into in less than a day. She was right; I wasn’t going to be able to calm down without help. I took the pill with the dregs of coffee remaining in this morning’s mug.

About a half hour later I was able to eat, change out of my pajamas, and head out to a discount store to pick up some necessities we had forgotten to pack. On my way up front to pay, I passed a display offering low-priced weighted blankets. I pushed my cart back and forth around the display three or four times trying to decide if it was worth the expense.

Finally, I slid it off the shelf and into my cart. Self-care decision number two. Hopefully I can keep this going for the rest of the trip.

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we did the right thing

Unmasked COVID-19 lockdown protestor holding large cardboard sign that reads "SELFISH AND PROUD!"

We did the right thing. We washed our hands, didn’t touch our faces (we think), limited grocery trips to once a week, stopped seeing our families, our friends, our loved ones. We wore masks religiously. We practiced patience even as our anxiety was ratcheted up daily by new cases, new hospitalizations, new deaths that used to be front page, headline news and now have become depressingly routine and are sidelined in favor of political antics in an election year.

And it didn’t matter. Because a few people–vanishingly few, if you think about how many people there actually are in this country (~330 mil)–decided that their own pleasure, their own needs, their own discomfort, were more important than saving lives and stopping the spread of a fatal disease against which no-one has any immunity at all. They and their selfishness ruined it for the rest of us. And now we have to start over. At a time when all I want to do is wrap my arms around my parents, who had a father and brother pass away while all this was going on, I can’t, and not only that, I have no idea when I will be able to again.

I miss my parents, who are not young and live less than a half hour from here, and who I was used to visiting every few weeks or so. I have not seen them, other than by Zoom, since late February. I miss my friends–I am autistic, I don’t have that many close friends–they are my lifeline, my translators, my cheerleaders, my links to a neurotypical world that I only partially understand. With the unique clarity of emotionless observance bestowed by my autism, this whole mask-wearing sturm and drang is seen for the patent absurdism it is. Get over yourself, people. Wear the damn mask. Even Captain Ape, my significant other who leans more conservative than me, has been wearing a disposable mask without complaint since March and recently purchased a cloth one for himself for long-term use.

And it doesn’t matter. None of it does. We are right back where we started. I presciently cancelled a vacation to the Eastern shore in late May, calculating for a rush of self-centered vacation-goers that would descend on the area over Memorial Day weekend and cause a re-closure therein, and sure enough, the area has now enacted a strict quarantine. Instead, a few of us will be going to a little-known beach community in our own state, minus our parents, for a week. This is a somewhat inadequate substitute for the usual two-week mass-family get-together we enjoy at a popular beach town that is a home-away-from-home for us, but we are blessed to be able to do it and I am grateful, and, honestly, a little terrified, that even doing this constitutes an unacceptable risk.

But all my careful planning doesn’t matter. My parents, our loved ones, all the vulnerable people we know and care for and worry about, they are at an even higher risk than they were four months ago, now that the virus has reached in to every community, large and small, to manhandle its population with absolutely no regard for politics, with even freer rein in communities with fewer health resources. Nothing has changed since April.

No, that isn’t true. Now, things are immeasurably worse. We had a chance to fix this and it was squandered by a bunch of self-centered a**holes falsely claiming that their freedom to infect others and get a haircut and go to Applebee’s was more important than everyone else’s freedom from disease. These people like to claim that asking someone to wear a mask is “forcing” people to do something. They fail to understand that not wearing a mask is forcing every single vulnerable person, and every single person who lives with or cares for a vulnerable person, to stay away from whatever gathering these non-mask-wearing, self-absorbed pricks decided to spread their spit around.

And I am angry, and I am tired, and I am frustrated, and I want to scream and cry and hit something, a lot of somethings, (or someones, let’s be honest) as hard as I can. Even though I didn’t spend all that much time outside the home or hanging out with my friends before all this, it was far more than nothing, and now it looks like nothing is how it’s going to be basically until I get it and maybe recover or until there is a vaccine.

Now, we who did what we were told, who followed the advice of health experts, are being punished for other people’s self-absorption. We are paying the bill for their profligate activities. I can’t even visit my faith community right now because they refuse to force people to wear masks for meetings and fellowship. Because they claim that they are open to all and can’t tell anyone what to do, conveniently ignoring the fact that by not enforcing mask-wearing, they are excluding a significant number of people from receiving the comfort they, and I, incidentally, need.

That’s right, people. Not wearing a mask is a gesture of exclusivity, not inclusivity. And if everyone, including you, had done the next right thing from the beginning, we wouldn’t be in the mess we’re in right now. Because of you. You, you non-mask-wearing, self-centered m-f. This is all–yes, all–your fault. I can’t see my parents because of you. I can’t go to a church basement because of you. I can’t go back to grad school in person in the Fall because of you. My income is suffering, and will continue to suffer, because of you.

We all made sacrifices. You refused. We did the right thing. You didn’t. And because you didn’t, we have to start all over, at a time when most of us are ill-equipped to endure another four months of solitude.

Your insistence on personal freedom has taken away everyone’s else’s personal freedom. I hope it was worth it.

Posted in Book Two - Mind, loose leaves | Tagged , , , , | 2 Comments

the default myth

Photo by Markus Spiske

One of my opportunities as a professional editor for primary research articles and dissertations is they are often primers on subject matter on which I am not an expert. A dissertation I edited last year introduced me to the concept of White Culture.

I had never thought of myself as having a culture. I had often, in fact, bemoaned the fact that I did not have a culture of my own in which to ground myself. I leaned on my Italian heritage and sought out related influences, modeling myself after the great-great aunts and grandmothers I’d been told stories about growing up. I remained blind to the fact that I was already steeped in a narrow and inscribable culture that exerted considerable influence on my thoughts, feelings, and actions. I remained totally unaware of this influence not just on what I did, but who I imagined myself to be.

What is White Culture? Here are a few items:

  • The elevating of quantitative data and information in the form of observable proof and outcomes supported by hard evidence, and an accompanying distrust of information lacking these underpinnings.

  • The willful siloing (separation) of public institutions from one another, including faith, community, government, accountability (the law), and medicine.

  • The privileging of an individual’s needs and autonomy over the well-being of the population as a whole. This can be seen in middle to upper class white families spending money and using nepotism to place their own children in the best possible situations at the expense of children from poor white and non-white families.

  • The prioritizing of individual wealth over societal good, as evidenced by anti-government rhetoric and anti-tax propaganda.

  • Well-defined social strata and a mistaken belief that it is easy to move among them despite, paradoxically, hard evidence to the contrary. This results in the demonizing of the bottom rung as lazy or stupid, and for those born into privilege to assume their financial fortune is based on effort rather than luck.

  • Black and white, us-versus-them, zero sum attitudes towards conflict and the double standards that naturally arise out of this viewpoint.

When I learned about these things, courtesy of a dissertation I edited followed by a rhetorical theory course, I suddenly saw them in my concept of self-worth in stark relief. Worship of hard data? Check. Separation of institutions? Check. Individualism? Check. Black and white thinking? Check. Distaste for those less fortunate than I? Check. I have been working to dismantle that last one for years, but with only mixed results, and less accountability than I should have.

Since I became aware of these things about myself, I have struggled to extricate them. I have reassessed my distrust of non-empirical data, although I have not been able to shake it. I have exerted myself to learn the different environments and circumstances that conferred or withheld opportunity and to understand and respect the individuals in them and their belief systems, even if I disagreed with them, also with only limited success.

It is a work in progress and will be for some time. And the fact that it is such hard work has shed light on why it is so hard for neurotypicals to understand autism. Neurotypicals struggle to understand other neurotypicals with opposing belief systems. No wonder they cannot wrap their heads around not just a different belief system, but an entirely different way of perceiving and understanding reality. Neurotypicals assume that their conception of reality is a default against which others are measured, rather than a single option among a broad range of them. The idea that one’s mental processes are not a default but a specific type that not everyone has is a heavy lift, no doubt about it.

I don’t want to make this post about my autism, though. I want to speak to this moment in time regarding civil rights. I want to discuss how White Culture has perpetuated systemic racism. And for the record, systemic racism does NOT mean people in the system are racist. According to the eloquent Radley Balko*, it actually does not speak to the beliefs or actions of the people in the system at all. Instead, Balko affirms that systemic racism refers to the “systems and institutions that produce racially disparate outcomes regardless of the intentions of the people who work within them.”

There is a tendency among whites, myself included, to assume that our culture [sic] is a default, or an absence of culture. This, in turn, leads us to assume we are normal and that any aberrations from our normal are just that–aberrations. When we see these aberrations, the natural tendency is to assume that they arise due to a lack of experience or intelligence, and to subconsciously (or consciously, in some cases) think of people in the aberrational culture as less human, less important, less feeling, and less worthy of respect than those like oneself.

This has its roots in White colonialism. White colonialism entails a recognition that the lion’s share of colonial history we are taught was written by white colonists, and that the experiences of the colonized were only described from a white colonist’s viewpoint. It seeks to at least partially rectify this by seeking out and highlighting these experiences in the voices of the colonized themselves.

White colonialism produced what is called the “colonial gaze,” the vantage point from which colonizers looked down upon the purportedly less evolved and less intelligent natives of whatever land they took possession. This perception allowed colonials to treat the natives in one of two ways: to try to “fix” them by imposing White cultural ideals upon them, or to view them as animals and treat them as such. While there were a few notable individuals who pointed out the ethical problems with both these activities, these individuals remained on the fringes, unable to make a dent in the status quo.

We can draw a straight and uninterrupted line from the colonial gaze to the mistreatment of non-whites that is perpetuated throughout White cultural institutions, including:

  • Medicine Blacks were originally thought not to feel pain at all, and are still considered to feel less pain than whites by a plurality of doctors and nurses.

  • Government and public service Acts to limit imaginary “voter fraud” disproportionately disenfranchise non-white voters. Gerry-mandering persists in most states wherein minority votes are concentrated in a single district to limit their representation and influence on policy.

  • Immigration Incarceration and inhuman treatment of non-citizens crossing the border persists, with immigrant families and children in cages and denied food, water, bathrooms, and medical care.

  • Law enforcement Blacks are three times more likely than whites to be injured or killed by police.

  • The court system Blacks are five times more likely than whites to be incarcerated and for longer periods of time than whites guilty of the same offenses and with the same histories.

  • Education. See racialized tracking, a system wherein non-white students are penalized more harshly for misbehavior than the same behavior in white students and shunted away from accelerated courses and opportunities that whites are preferentially shuttled into.

  • The financial system Banks charge non-whites between 5 and 9 points more on their loans than equally-qualified white borrowers.

In fact, if you Google “Racial Disparity” you’ll get hits ranging from Cliff Notes to YouTube to the Science Direct primary research database.

If this isn’t evidence of systemic racism, I don’t know what is. And as much as this phenomenon bothered me, I never examined my own bias and prejudices. I never took action against systemic injustices. I told myself the problem was simply too big to solve to excuse this lack of action. But the closer I examined my natural responses to differently colored people, the more previously unrecognized bias I uncovered.

  • I realized that I assumed that black people were “stronger” than white people physically and mentally.

  • I realized that I assumed all blacks thought and felt the same way about all political issues.

  • I realized that I assumed political beliefs I disagreed with were the outcomes of lazy thinking, rather than natural, evidence-based conclusions borne out of one’s circumstances.

  • I realized that I assumed that loiterers were criminals and not individuals in bad circumstances trying to find work.

  • I realized that I assumed that blacks who wore their hair, dressed, and spoke “white” did so by personal choice, and not because they were forced to in order to succeed.

  • I realized that my efforts to learn more about other whites from different communities were not matched by efforts to learn more about non-whites from different communities.

  • I realized that I had never thought twice about the fact that all of my interactions with police were completely non-violent and never escalated beyond a citation.

In fact, when I was pulled over in college going 95 in a 65, something that would have surely resulted in a beating and arrest if I were a black man, all I got was a court summons; I was then allowed to drive home. No handcuffs were employed. In court, I got probation and a fine. No jail time. The extent to which this experience reflected the color of my skin did not occur to me until literally the last few days or so.

I’m so ashamed of my contributions to systemic racism, of my privilege in ignoring certain laws without fearing for my life, of taking for granted that I get preferential treatment from the system because I am white, and I look and sound white, and that even if I chose to dress and speak differently, I could make that choice without losing access to my privilege.

It’s upsetting, but it’s also motivating. I’m not stuck thinking this way; I can change it. I can change my behavior. I can check my privilege before responding. I can apply a White Culture and white privilege prism to my life to root out personal bias. It’s hard and it takes a lot of mental bandwidth, something I don’t always have a surplus of, but now that I have realized these uncomfortable truths about myself, it is my responsibility to address them.

It may be that my understanding of autism and how it differs from a supposed default neurology has made me more open to the idea that there really isn’t a default anything, be it thinking, perceiving, looking, sounding, acting, feeling, or knowing.

It thus follows that there is no such thing as a default culture, body, or mind. There are countless different versions of all of these, even among different individuals we lump into categories like black, conservative, disabled, autistic. Dispelling the seductive myth of the default is an important first step towards removing systemic entanglements with racism, with ableism, with cronyism, with chauvinism. We need to see with fresh eyes and think with fresh minds. Look around you and see your culture. Recognize its influence on you. Use this information to imagine how you could be better.

And I want to acknowledge that among my friends and peers, I do know a few people who already do perceive different cultures, including their own, as simply different, and don’t traffic in assumptions about cultural defaults. I want to honor them as examples of how I want to think about and interact with others that may look different from me. I want to become one of those people.

I know that being better people is something everyone does want, no matter what their apparent category is. This moment is an opportunity to move past default-based ideas and accept new possibilities. I plan to take it.

*This post originally misspelled Mr. Balko’s first name as Rodney instead of Radley. The latter is correct.
Posted in Book Two - Mind, Setting 3 | Tagged , , , , , | 1 Comment


A photo of a white neon sign against a dark brick wall that says "THIS IS THE SIGN YOU'VE BEEN LOOKING FOR"

Photo by Austin Chan

Yes, I am usually unqualified to write a post entitled “normal.” But occasionally, my inability to assimilate emotion and information, something that has been ascribed to my autism, is useful, maybe even necessary.

This is one of the those times.

So here goes:

The coronavirus is not going away. Vaccine or no vaccine, cure or no cure, it will be with us for many years–yes, years–to come. Based on what I’ve read, from various primary and non-primary sources, this is how things are now. We are not going to go back to what normal was before this virus exploded across the globe. That normal is gone.

What we are experiencing right now, social distancing, masks, limits on group events, and quarantine “bubbles,” is the new normal. This is no longer an aberration. This is life.

Admittedly, it’s incredibly depressing to realize that the lives we took for granted around four months ago are completely gone. We didn’t get a chance to do the things we would have done if we’d known, like hug our grandparents or nieces and nephews, or take our kids to the park, or go visit that friend who lives two or five or ten hours away that we’ve been meaning to take a weekend trip to see. Didn’t get to go to one more football game, or basketball game, or any kind of game. Didn’t go to a parade. Didn’t go to a party. Didn’t answer the door for trick-or-treaters (OK, that’s probably just me). Didn’t have a cookout with our neighbors.

And now we can’t. Not can’t for now, not can’t for the next however so many weeks or months. Just, can’t.

It’s painful. But it needs to be said. For us to move on, mentally and emotionally, we need to recognize that our lives have drastically changed, seemingly in an instant, and that change is permanent.

Conveying this information is useful because it provides certainty where there wasn’t any. I can’t speak for other autistics, and definitely not for non-autistics, but for me, uncertainty is the hardest thing to deal with, mentally and emotionally. And being able to admit to myself that I am not in suspended animation, that I have stepped off a bridge onto a new place and that the bridge that got me here only goes in one direction, has been surprisingly reassuring.

I found the realization that I can start making plans in this environment because this is how things will be for the foreseeable, to be a relief. I mean, I’m not jumping for joy or anything, but acceptance has allowed my anxiety to start edging downward.

This is another situation where autistic voices can be important. Our ability to face hard truths and eschew ambiguity, our mental flexibility in the face of new information, and our natural tendency to compartmentalize, to deal with emotions and information discretely, means that we are uniquely equipped to provide unpleasant but necessary information in no uncertain terms. No “might.” No “suggests.” No “supports the idea.” Just a basic, raw, unvarnished piece of data.

If we are to accept that autism is not a disease or a disorder, and that autistics are not robotic geniuses but just a different version of person, and that non-assimilation of cultural and social norms as natural is not just a real thing but an occasionally useful one, then stepping forward in times of crisis where we can be useful is an important function.

While this does wade into the dangerous territory of defining people by their usefulness, we can insist that isn’t necessary while still being useful. I am an autistic person with science-based post-secondary education who edits primary research for medical and life-sciences journals. As someone who does this, I feel a social responsibility to contribute to the well-being of those around me, if possible. This feels like an opportunity to do so. It might [sic] not come across that way, but hey, this is what I got.

Usually, it’s really hard to be myself. In this instant, at least, I feel like being myself is necessary. It’s a nice feeling.

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Black Lives Matter

Photo of a person wearing a red t-shirt with the slogan "Black Lives Matter." The slogan fills the entire frame.

I am autistic. I suffer a great deal because of it.

But. I can hide my autism from other people. I can disguise myself as a neurotypical.

Non-white people have no such privilege, no such security. In this country, their daily lives are marked by a casual racism they must always account for, daily lives that whites take for granted in a culture wherein even people like myself, who are not overtly racist and do not believe that color of skin defines character, are allowed the privilege of not engaging with the deep-set, disgustingly acceptable racism that pervades life in this country at every level.

I hereby want to acknowledge that my lack of active resistance to the racism of white culture was a privilege that amounted to tacit acceptance. I am ashamed, I am humbled, and I am horrified at my failure to comprehend and empathize with those whose lives are inscribed by an injustice so pervasive that those not thus inscribed assume it is a default, rather than a ignominious aberration from what it means to be a decent human being.

I will not stand on the sidelines any longer. Black Lives Matter.

Comments that say “All Lives Matter” or otherwise will be deleted. I defy anyone to watch the George Floyd video and attempt to perpetuate such a fiction. If all lives mattered, he, and countless others treated that way in the absence of video footage, would still be alive.

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is like

A picture of a table describing the close similarities between video conference communication and autism

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what doesn’t kill me (isn’t going to work)

Surprising no one, my first application for disability was denied. In researching next steps for an appeal, I discovered that one of the things the committee considers, although not in so many words, is whether my disability will kill me. The types of disability to which this doesn’t apply include blindness and deafness. So I guess that’s good. Of course, autism is not discussed.

Another issue is whether I was able to work “before” this happened. Unfortunately, there was no “before.” I have always been autistic. I have been trying to work despite it, and been unable to sustain part-time or full-time employment without debilitating mental and physical ramifications. While repeated attempts to do so have caused some permanent mental and physical damage, in and of itself, my autism doesn’t disable me the same way physical disabilities disable people. My “ability” to work, strictly speaking, is not impaired.

The problem isn’t that I can’t work. It’s that once I start working, it is only a matter of time before I burn out and have to quit. But instead of becoming progressively more disabled in such a way that would be visible and quantifiable, I slowly morph into a bad employee. As I become more and more rundown, my neurotypical employee presentation starts to show cracks.

First come the absences for “personal” or more dubious reasons, once just one day here and there, that progressively increase in length and frequency. Then come the complaints from fellow employees and supervisors about my attitude and rudeness. This is followed by a drop-off in my adherence to departmental policies I deem unnecessary. The last stop before I leave is a total meltdown in the workplace, at best resulting in me needing to be sent home and given a few days off, and more often resulting in a sabbatical from which I never return.

After the denial of my disability claim, which was upsetting enough, I had to get back on the horse and try to hunt down an attorney willing to help with my appeal. When I finally got one to call me back, I realized why no-one else had. As disabled as I now am, I am still not disabled “enough” to receive government aid.

There are two types of disability one can apply for in the U.S. One is a mental disability, the other is a physical disability. While a mental disability would seem the obvious choice, as I can no longer sustain anything like full- or even part-time employment of any type at home or otherwise, the fact that I still spend a handful of hours each week on school or other work means that I am not mentally incapacitated, and thus, do not qualify as mentally disabled.

The attorney I spoke to even admitted that there is a gaping hole in the law; someone too disabled to work enough to support herself but not disabled enough to be unable to work at all, like me, gets caught this gap. As such, if I wanted to qualify, I would have to quit working for at least two years, and drop out of graduate school forever. (What I would do for sustenance during this time remains unclear.)

As far as a physical disability, despite my claims that my previous bouts of full time work exacted a significant toll on my physical and mental health, such that I dare not risk running up that bill any further, the fact that no actual physical event can be traced to my current incapacity significantly undermines my case, especially because I am still “young,” or rather, under 50.

Certain physical aspects of the aforementioned costs are now permanent: I need a minimum of 9-10 hours of sleep every night, I have pain in my right shoulder that never goes away, and my insomnia and anxiety are so bad that I take four separate medications to manage them. These issues, however, do not a disability make. And, not wanting to make them any worse means absolutely nothing.

I am genuinely scared of what might happen if I were to try to work even part-time again. But what am I supposed to do? The law, the forms, the way it is all written, there’s no place for me in them. Considering how many adults are on the spectrum and compensate for it, my situation is probably shared by tens of thousands of other people, and they, too, are ignored, just like I am. The law, as it is written, creates a reality in which even the tiniest scrap of functionality means one isn’t really disabled. It creates a reality wherein a mental disability like autism, that can’t be quantified, is not really a disability.

It’s a second level of rejection I wasn’t prepared for. I wish I could just give up. I wish I could just lean on my chronic pain during this process, as I was advised to do early on, and not have it feel like a dishonest cop-out. I wish I didn’t feel like it was more than just me and my autism at stake here. But I know other autistics look up to me. They need assistance as much as I do. If I don’t push for this, I’m not just letting myself down; I feel like I will be letting down the whole community.

I feel like I’m stuck in this groove of going around and around trying to get my autism, and autism in general, recognized for what it is and how it affects people, and I keep hitting this same wall, over and over. I want the laws to change, and I’m trying to create a vernacular through which to do that, but my voice is tiny and my reach is minimal. Every time I think about it, it feels like my insides are being ripped apart. I keep thinking why bother? What difference will it make?

And with everything else going on, who has the bandwidth to spare for someone who looks and sounds perfectly capable despite claims of autism and the difficulties in appearing so?

No, autism won’t kill me. Just add it to the list of things that mean I’m not “really” disabled.

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


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

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

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


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

Posted in loose leaves | Tagged , , , , | 2 Comments