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You. Yes, you. I am talking about you. You can’t be surprised I am talking about you, since it’s always all about you, anyway. As long as you feel good, as long as you get what you want when you want it, as long as no one is threatening your assurance of entitlement and superiority, that you. The you who just told me to fuck off and hung up on me because the overburdened veterinary emergency room whose services you claimed to be so grateful for took “too long” to discharge your pet to you. You who when asked to participate in research that would benefit autistics told me to fuck off because it involved admitting that someone other than you might be the smartest person in the room.
You who slammed on your horn because I didn’t respond to the green light soon enough. You who threw things at the door of the hospital because you didn’t pay attention to what we explained about COVID procedures and that you would have to wait outside. You who let your pet eat your drugs and then complained about the three hour wait and $1000 it would cost to treat said pet and insisted that there were no drugs around your pet.
You who screamed and cussed out the bank teller. The fast food clerk. The airline scheduler. The insurance company. At the people whose lives suck just as much as yours, if not more. Who are getting paid a sub-living wage for more work on top of having to deal with tons and tons and I mean TONS of people just like you. You think you are special. You think that we are inconveniencing you because we can, not because we have to. You think that people think you are a stupid and a sucker and you are going to TEACH THEM A LESSON.
As if you were the person to teach it. As if you knew who it was that thought that about you, because it wasn’t us, the overworked underpaid service people you feel like you are entitled, no OBLIGATED to inform that you are not going to take our crap. It was people who have something to gain by keeping you as outraged as possible. But that couldn’t possibly true because you would notice, you think. Your eyes are open. You can’t be manipulated. Shame on me for thinking so. You wouldn’t let people take advantage of you. Not anyone. You are sure that you know everything there is to know about everything, and that whatever you think about something is what it really is.
That’s what they are telling you, the very people who are, in fact, taking advantage of you, just to weaponize you against people who have no choice but to smile while being shit on by people like you and have to apologize for the shit that isn’t even their shit, because you can dump your shit wherever you want. Who live in the same world as you but don’t have the dubious luxury of being an asshole about it because assholes like you will make our lives a living hell because you, YOU, are the only important person in the room. In the building. On the planet.
You. Why do you get to be rude? Who decided that you, just you, were special enough to not have to play by the rules? Who told you that the world would be a better place if you acted like a child in enough ways for enough days? What makes you think that you are the only one in pain? How did you come to the conclusion that anyone who isn’t like you must be plotting against you, you, of all people, you, who DESERVE better, as though everyone didn’t deserve better, not just you?
You know exactly what I mean. You know when it happened. You decided that you had had enough and anyone who wasn’t helping you clearly had some ulterior motive, was part of the massive plot to keep you from getting everything you are entitled to. You had HAD ENOUGH.
Listen, you. We’ve ALL had enough. Life sucks for EVERYONE, not just you. You can be angry. I’m angry. We’re all angry. But don’t confuse anger with being rude. With being mean. With being selfish. Because you can be angry and still be nice to people. You just choose not to because you think you shouldn’t have to. Because you are special. Because you are sure that someone else is getting something you’re not getting and you want to make sure that the only person who gets special treatment is you and if you even think, not even know, even only barely suspect, with no evidence, that someone might be getting more than you, you will spew loud and self-important waste on all of the people who arranged for that person getting whatever it is that you are sure they are getting and you are not getting and remind everyone that you, and only you, are the person who should get things.
Because it is always, always and only, always about you.
I now work at an animal hospital again. Only part-time, because autism, and at the front desk, because after multiple surgeries my dog-slinging days are officially behind me, but a place to be around pets and animal lovers and use my veterinary/animal sciences knowledge.
There is a white board in the back that lists pets that are on the way and have just arrived, with the pet’s name and the reason for the visit. Like, “Fluffy ingrown claw” or “Chloe V+ D+” (vomiting and diarrhea). The other day, it had “Crash HL lameness” and my anti-central-cohering autistic brain did not immediately register “Crash” as the name of the pet.
Crash Thomassen (not his real last name) was a black lab (not his real breed) who had apparently, appropriately enough, torqued his knee at the dog park for reasons not unrelated to his moniker. Once I met the gregarious pooch and it clicked that Crash was the name and not the injury, I thought that Crash was probably the perfect name for him.
Pet owners tend to be rather uncreative when it comes to names. At any given time, we have multiple Peppers, Lolas, Sadies, Luckys, and Buddys in and out of the facility. (Oh, side note here, please do not name your pet Lucky for any reason.) The only exception is pug and bulldog owners, who lean towards hipster names that are much cuter on dogs than on people’s kids, such as Martha, Gertrude, Chauncey, or Walter. So when someone comes up with an excellent dog name, it gets noticed. Crash was a hospital fave.
And a personal fave. The name Crash speaks to me. Because that’s me, right now. I have crashed, and burned.
Three semesters of grad school via Zoom have wrecked me. Class discussions and impromptu tangents are the fun part of grad school. They balance out the herculean and thankless labor one must otherwise expend reading gross amounts of peer-reviewed literature and pulling together a research project that will culminate in a thesis or dissertation, otherwise known as the longest and most harrowing paper you will ever write in your entire life. Zoom took the fun part away and made the herculean gross part exponentially more thankless. Grad school work requires a level of sustained intellectual concentration that I simply cannot muster right now. And I am not just tired of schoolwork. I am tired of thinking. I have completely lost the motivation to apply mental effort to, well, anything.
I got an email today through my professional website from someone who listened to an interview I had given in April of 2020, before Zoom wrung every last drop of passion out of me for the work I had been doing. The email referenced my desire to create a new language around autism, to amend the ADA to more specifically address accommodations for those with neurological and other invisible disabilities, and even the problematic use of the word “disability” to describe autism, a condition many, including myself, regard more as a gift than a burden (or at least, equal parts therein). The email writer’s interest and excitement were palpable even in the brief note, perhaps all the more so in the context of my thorough lack thereof.
I used to think someone needed to do this work, and that I was as well-equipped as any to do it. It used to be my excitement that was infectious, my dedication that was so enviable. But it’s just gone. Now the only intellectual work I do is counseling first-time pet owners that most of the time, a vomiting puppy is not an emergency and that sometimes, cats stop eating for inscrutable reasons and will start again when they are hungry enough. (Er, this is not intended as medical advice. If your puppy is throwing up or your cat has stopped eating, please call the vet.)
I used to have a five year plan on the wall in my home office space, with a timeline specifying numbers of articles in the lay press and in peer-reviewed journals, conference attendances and presentations, what I expected my career to look like as I leaned in to advocacy following completion of my master’s which was, at the time, a given. I tossed it when I packed up and moved into a new house last month, perhaps assuming I’d print out a new one and hang that up instead. But I didn’t, and I haven’t.
I know Zoom courses were hard on everyone, instructors and students alike. But I relied on my peers for more than stimulating conversation and alternative insights. They reflected and amplified my passion for the work, commiserated with me on the challenges, and made me feel like what I was doing, as crazy and unlikely as it seemed for someone like me, was worth doing, and even more, that I was the right person to be doing it.
Even as we joked about the difference between reading an article and “going over” it, bickered good-naturedly over whether you could include something for which you only read the abstract as a reference, and self-consciously modeled academic wherewithal for undergraduate students in courses where we were TAs, we were reifying ourselves and our reasons for being there. As difficult as it was for me to sit in a room for three hours and stay “on” and mentally engaged, it was exponentially more so when my peers were tiny, disembodied faces on a computer screen, if I could see their faces at all, as a plurality of us would turn off our cameras at various points during the online lecture to shop or put laundry in the dryer or cook dinner or whatever other mundanities we could now engage in whilst attending class at home.
At some point, I was always going to have to learn to look inside myself for the necessary passion and work ethic. But I feel as though the collegial part of the process was truncated unnecessarily in the most abrupt and painful way possible, like being in a relationship wherein the other party has suddenly become incapacitated. When we switched to online coursework after Spring Break in 2020, it was like a fun, weird, interesting new thing that I engaged in with people I had forged relationships with in the preceding eight weeks. By the Fall, though, I and a collection of mostly strangers slogged through the material as individuals on separate islands, only communicating through online, inaptly named discussion boards that only facilitated discussion in the presence of a real world counterpart and were woefully inadequate to the alternative.
I could no longer spontaneously bounce ideas off a classmate or professor walking to or from my car. The friendly arguments about reading material that I cultivated–I loved engaging with people who disagreed with me because I got so much out of being forced to justify or change my point of view–were completely gone. Even the online Zoom discussions were nothing of the sort. One person would talk and stop. Another would talk and stop. And another. Half of the students wouldn’t bother talking at all. There was no back-and-forth. And we were all so starved for casual interaction that when the professor would shunt us off in smaller Zoom rooms of two or three, we wound up talking about just about anything other than whatever it was we were supposed to be discussing because in that dark fall and winter of 2020, those little groups made up the lion’s share of our social interaction.
I think part of the reason I’m recalcitrant is because I’m pissed. I feel like I was cheated out of something I was owed. I harbor no small amount of resentment at being forced to pay full price (through loans, of course, so it’s not even like it was my money) for a lousy facsimile of a graduate school experience, as useless as paper doll clothes on a Bratz, and about as fungible. I barely even remember what my Zoom courses were about. Instead, my strongest memories are of being lost and frustrated, of finding so much of the material opaque, and of feeling like I was completely out of my depth. I would rather re-take an in-person class I hated three times over than have to take courses I would have thrived in in an in-person setting online again.
So, like any self-respecting adult, I’ve decided to invest in my inner two-year-old and turn away from the whole business and answer phones at an animal emergency room. To say this is a waste of my experience and talents would be an understatement, but I don’t care. It’s my way of thumbing my nose at the whole sad dumpster fire that this pandemic made of my plans. Fuck that, I keep thinking. What’s the point. I threw all that time and energy into it and now I’d rather watch football and pick out curtains for the window in the downstairs bathroom than pad up and dive back into the indignant moral superiority I felt when advocating for neurodivergents, a fire that kept me going even when it seemed like nothing I did would ever have that much of an impact.
Maybe this post is the first step in finding my way back to that passion and energy, in rediscovering what it was inside of me that made me think I had any business doing it in the first place. It didn’t used to be hard. It was easy. Graduate school was so easy for me compared to some of my fellow students. I bloom under the right kind of pressure, especially with a little friendly competition, with really smart people around me that force me to stay sharp and keep up with them. Nothing hones my writing skills like a deadline. Now that I’m out of the coursework and into the thesis portion, though, with an ultimate deadline still a year and a half away and no other striving, quick-witted grad students around me, it’s just easier to slip into obscurity, especially wearing the same scrubs as everyone else and a mask to hide my face. If no-one reminds me that I’m special, then I don’t have to be special. Fuck that. What’s the point.
I don’t know what it will take to reignite my pilot light. I keep hoping it will be something outside of me. Like the email I got today, although all that has done is brought my current dilemma into sharp relief, illuminating just how far off the path I have wandered since the pandemic forced my graduate education into a state of suspended animation. I had assumed I was just burned out and needed a break, and that’s probably true. But am I supposed to wait for my body to tell me I can go back, or will I need to pull myself up at least part of the way out of this hole by sheer will power even though I’d rather stay here in this nice, dark, quiet little space uncluttered by my or anyone else’s expectations?
I don’t know. But at least I’ve started writing again.
The Ape is on hiatus to recover from a surfeit of anxiety and stress, and will return in Fall 2021.
Or, Why I’m Not Happy that Elon Musk is Autistic.
I am always grateful when someone famous announces that they are autistic. Or so I thought. Now I have to say that I am almost always grateful, because in the case of Elon Musk, gratitude was not the first, or second, emotion that I felt. Instead, I felt apprehensive and weary, because I knew I was going to have to write this post, re-inform people as to what autism isn’t, and explain why I’m not happy about his announcement, over and over, because people love asking the one autistic person in their lives about every little thing that has anything to do with autism. And not only am I the only autistic person they know, I’m the only autistic person I know, so this blog is the only place I get to vent about it.
Basically, the last thing the autism community needs another example of a white male autistic who fits the vanishingly rare stereotype of the super-genius misanthrope. At the risk of stating the obvious, most people with Autism Level 1, as Asperger’s is clinically termed, do not have 99th percentile IQs and aren’t billionaire entrepreneurs. A considerable number are not even white men. People with “high-functioning” autism are a diverse group of individuals with a range of functionalities of which those like Musk’s (and, full disclosure, mine) are the ceiling, not the average. Such outliers are exceptions to the rule, their success unattainable for the rest of the autism community.
Most people on the spectrum, including me, struggle in our day-to-day interactions because we don’t intuit social norms. We pay a price for unintentionally upsetting neurotypicals (non-autistics) around us, who often accuse us of having a “bad attitude” and “negative tone.” But these traits are just fine if you are a white male of outrageous wealth, autistic or otherwise.
Musk is a self-centered blowhard whose only goal in announcing he had Asperger’s was the promotion and benefit of Elon Musk. When someone like him comes along and says they are autistic, it reaffirms stereotypes about autistics being unfeeling savants and reifies a social structure where the norms that apply to an overwhelming majority of the population are lifted for the elite few.
This is a problem for several reasons, of which being allowed to be a jerk if you’re privileged is the least of them. Lack of knowledge about autism makes a celebrity of Musk’s stature a template against which all other autistics, including the non-white, non-male, non-rich and non-genius, are measured, thereby setting an impossible standard none of the rest of us can reach. People already carry around a lot of negative implicit bias against autistic people, even though most would claim otherwise, and Musk just reaffirms what they already feel.
For autistics who aren’t named Elon Musk, there are severe penalties for not adhering to social guidelines. We have to work for bosses, at the local fast food joint, retail store, or office, and we do so at their pleasure and according to their rules. Musk may be a genius, but he wouldn’t last a single shift at the local Starbucks, and he’d undoubtedly blame everyone else for getting himself fired, because that’s the kind of guy he is. Most autistics are not like that, but those like him make it that much harder for us to convince people of that fact.
Do we need people to make autism more visible to non-autistics? Yes, absolutely, and that’s why Musk’s reveal isn’t all bad. At least we’re talking about autism, right? There are as many different types of autism presentations as there are people with autism, and I have no doubt as to his diagnosis. But autistics struggle to hold down jobs, make and keep friends, and meet the expectations of the neurotypical (non-autistic) people around them, challenges that, if Musk ever faced, he certainly doesn’t have to worry about now. If only his admission had come with caveats, with a “Yes, I’m successful, but I’m the exception, not the rule,” I would have cheered him on. Instead, he’s become the latest front in our ongoing battle against tired autism tropes.
Most people will never be billionaires. Most autistics will never be Elon Musk. This is an opportunity to recognize that autism is more common than we realize. So long as we realize that Musk is not a common autistic, that is good thing, and I [wearily] welcome it.
Online newspapers are strange animals. Unlike the paper versions that have a different set of articles every day, online outlets show certain pieces with lots of hits for weeks on end, while the less popular/clickable ones can slip out of view in a matter of hours. So you’ll keep seeing the same headline over and over in some cases, and be unable to locate one you saw that morning in others. In this context, there’s one headline that seems to have been up for months, although it’s probably more like weeks, on one of the online newspapers I frequent. It’s about a [presumed, and presumed female] travel writer whose advice for those of us unfortunate enough to have more prosaic lives is that we just need to “get past fear.”
That’s it. That’s the headline. “[Travel writer name] to [us poor schleps]: Get past fear”
I’ve gotten some pretty useless advice in my time (chronic pain sufferers are constantly–constantly–fielding unsolicited medical advice), but “get past fear” takes the prize. First, fear, in and of itself, is a hard-wired evolutionary response that has served us well at the species level for tens of thousands of years. I’m really glad my ancestors never “got past” fear or I might not be around. Second, advice to just “get” past whatever “fear” means to the travel writer is nothing more than a particularly annoying manifestation of an already swollen category of misguided, inadequate life “hacks.” It’s like telling someone to “get past sleep.” Wouldn’t life be amazing if we didn’t have sleep? Think of all the things we could do! All the leisure time we’d have! It would be so freeing!
And it’s about as likely. Get past fear? What does that even mean? Fear of what? In the context of solo travel by a woman, that seems like really, really bad advice. Fear is what makes you careful. Fear is what keeps you from being alone with strange men, from going on a hike out of cell range without telling anyone, from buying LSD from a bartender you just met. What kind of fear is this woman talking about? Fear of not being able to pay your rent? Fear of being kidnapped? Fear of having an emergency in a strange country where you don’t speak the language?
Or is it the “fear” (if I could put more scare quotes around it without looking stupid I would) of “discovering” “who you really are”? And who is even afraid of that anyway? How is it possible to be afraid of something that, let’s be frank here, is all but impossible in any real sense? How much about yourself that’s available as self-knowledge could you not know already, and how much more is likely to be revealed, EatPrayLove-style, by a change of scenery?
It’s not like you will suddenly discover that you are a completely different person. And despite what most marketing executives would like you to believe, it’s not even a real thing, this “new you” that could be brought about by traveling, drinking organic hard seltzer, getting a Peloton, or buying designer clothes at 70% off. (It’s still the same you, just in a different place, buzzed, in more debt, and in a different outfit.) And even if some unexpected self-discovery was out there to be made, how is that a terrifying prospect? Gee, I always thought I was the kind of person who liked sushi but I’ve just realized I’m not. How horrifying! Well, I better make sure not to have any more epiphanies like that one. I barely survived!
Assuming there is some other type of “fear” to get past in this context that has escaped my literalist autistic brain, I sincerely doubt that a simple admonition to “get past” it is all that was missing from the experience. OMG! I just need to get past fear! I wish someone had told me sooner! This is the answer to all my problems!
As an example, here’s a little personal disclosure: I hate large flying bugs. I can handle flies and small moths, but anything over an inch long with wings is scary to me. Maybe not a phobia in the truest sense, but definitely anxiety-inducing discomfort that increases exponentially with the number of said creatures around. The area where I live is a few weeks away from being beset by a once-every-seventeen-years, biblical surfeit of harmless but extremely large and clumsy flying bugs. I’ve got real fear, unfounded as it may be, about this upcoming event. In fact, my heart rate goes up just thinking about it.
According to this travel writer, I just need to “get past” this fear. (Specific instructions not included, of course.) But you know what? No, actually, I don’t need to do that. I need to go somewhere where there aren’t masses and masses of large flying bugs, which is what I did last time this happened and it turned out great. Unlike visiting old friends, getting past my fear of large flying bugs will not improve my life in any quantifiable fashion, and, worse, would require a significant investment of psychological resources better spent on improving my fair-to middling self-esteem and not losing my s**t about my upcoming thesis project. I do not need to get past my fear of giant insects–or anything else, for that matter–in order to live a fully-realized and happy life. (What I do need to get past is how annoying I find life hacks to be in general. Life is supposed to be lived, not hacked.)
And that’s it? That’s all she’s got? That’s her sage advice after soldiering through all the trials and tribulations life has thrown at her? After all of the experiences, tragic and sublime, that she’s had to confront, move through, and learn from, this is the fresh, novel insight she’s offering to the masses laboring through drab existences of unfulfilled potential? I’ve read fortune cookie fortunes with more depth and purpose. Get past fear? Get past my middle finger. The least she could have written was “I conquered my fear of [X] by doing [Y].” [Y] might not work for me but it least it would have carried some weight in terms of context, in terms of the person doing it, in terms of her unique existence and fear of [X].
There are lots of difficult things in life that we have and do need to get past, the pandemic and resulting fallout being the most present and significant therein. “Fear” of some intangible personal discovery, however, is not among them. On the other hand, fear of something genuinely dangerous, like mountain cats, is a healthy and well-respected survival strategy. My advice? Don’t get past fear. Pay attention to it. Assess and analyze it. Decide if it’s helping you or holding you back and deal with it as such. And don’t go someplace with lots of hungry mountain cats.
Eventually, people will stop clicking on that stupid headline and I will be able to get past it and start writing blog posts of substance again. Now, that is something to be feared.
I can’t get this episode out of my head. Normally, I find Law & Order SVU to be tepidly provocative, if clumsily, a show that at least tries not to traffic in stereotypes, with mixed results. But I watched Episode 4 from Season 16 last night and it made me so angry that I went on a lengthy, apartment-stomping tirade after the episode was over that my significant other was the innocent and unfortunate recipient of.
The show is entitled “Holden’s Manifesto.” It features a socially estranged teenager passionlessly documenting his hatred of women for their stupidity in passing him over, a clean, polite, intelligent young man, for attractive but manipulative brutes that use women and toss them out like garbage. The teenager’s name is Holden March, and the episode is entitled “Holden’s Manifesto,” after a 300 page work he composed outlining the details of his personal philosophy towards women.
When the episode begins, it becomes apparent that this misguided young man has just snapped. He films himself with his phone calmly discussing that he is finally about to exact revenge on all of the people who wronged him. The screen goes black and the next scene is of a young woman on a stretcher being wheeled into an ambulance, the victim of multiple stab wounds.
Holden manages a small but surprisingly effective killing spree before finally being killed himself in the final climactic scene. Typical crime show, right? Nothing new here, right?
Sure. Almost. Actually, no.
About a third of the way in, SVU detectives track down Holden’s parents to talk to them about their son. And the father mentions that he suspects Holden is “on the spectrum.”
Cue my annoyance.
I kept watching anyway, hoping that at some point during the remainder of the episode, some possible reason for the casual slandering of autism as producing murderous sociopaths would present itself. But it didn’t. It was never mentioned again. Not one other person in the episode who had ever come into contact with Holden ever reaffirmed the father’s suspicion. The word “autism” never came up, not once, not even at the very end.
Cue my fury.
You know, it’s almost worse that it was so casually inserted, instead of being explicitly addressed or at least woven into a plot point. It’s just more subliminal negative messaging about the neurologically divergent, in this case, that autistic boys are destined to become psychopath killers before they reach adulthood. His father blurts out “on the spectrum” in such a way to indicate that it causes him both disgust and shame. The result is that the entire episode associates this sadistic teenager with autism with the kind of insidious subtlety that colors people’s views about something without them consciously knowing why.
But I know. And even my significant other, Captain Ape, who you wouldn’t think would otherwise be attuned to subtle disability discrimination, looked at me right after the father said it, in anticipation that I would have a negative response, an intuition that proved correct.
TV takes a lot of liberties when it comes to people who are intellectually or psychologically disabled. The former, the intellectually disabled, are usually physically imposing, heavily overweight men who have been manipulated into committing violence either by circumstance or bad actors who are generally family members. Things tend not to work out well for them in the end (that is, they die a lot).
The latter, the psychologically disabled, are nearly always both schizophrenic and unhinged killers when off their meds, and the show typically broaches the conundrum of medication side effects vs. mental disease without ever offering an opinion about it beyond stopping the unhinged killing.
And then there’s autistics. There are two kinds of autistics on popular media. There are nonverbal male children who wail and howl in response to people coming within a few feet of them, coupled with physically distorted flapping and hitting themselves, who, if necessary for the plot, can only be suddenly calmed by some special cast member.
Then there are the adult male hyper-articulate but monotonic, emotionless, and nonreciprocal savants who also howl and hit themselves when upset.
Notice there aren’t any women. Notice that they are universally portrayed as physically acting out, sometimes in violent and dangerous ways. Throw that into the stew with the SVU episode I just mentioned and there’s nowhere for someone like me to go, to be, to be real or realized. And there’s no wonder society’s views about autism remain stuck in flawed research from the 70s and 80s and a targeted disinformation campaign by a well-known charity claiming that having an autistic zombie, I mean child, is the worst tragedy a family can suffer, even worse than death.
For every person who with an autistic loved one who gets it, there are countless others who associate autism with wailing and howling and barely-contained violence. Who see autistics as underdeveloped humans, a subspecies in the no man’s land between man and chimpanzee.
And I can’t, I just can’t, I can’t let it go, not even a little thing like this, which isn’t a little thing at all to those who live on the business end of autism falsehoods and myths, about being incapable of empathy or communication or reciprocal relationships. About being lassoed into a vaccine controversy that still claims far too many proponents who think disfiguring and fatal childhood diseases are preferable to being autistic. Where people look at me and assume that I am lying about being autistic for some nefarious purpose of my own. I can’t not be emotional about it, not scream and rant and rave while at the same time just wanting to throw up, give in, and curl up into a ball because the social construction of autism is too deeply embedded, too indelibly calcified into our culture for it to ever change.
So instead I just go on and on about a single episode in a series with literally hundreds of them because that single episode explains my entire life story and sometimes you just need someone or something to blame. For the years and years of abuse, the infantilizing, minimizing, belittlement and disbelief that have carved psychological scars in me that are so deep I might never be able to fully heal from them.
This is what I think about people who think of autism with disgust and shame. Stop spreading around your insecurities and calling them opinions, stop ignoring disabled people in hopes they will disappear for your convenience, and for the love of god please stop thinking that autistic people are zombie sociopaths. (Or alternatively, go f*** yourself.) Thx.
So after reading yet another article about how the “wellness” (cough, puke) industry uses unregulated and non-factual claims to sell products to unsuspecting women while managing to completely ignore the reason women are searching for such things, followed by me writing fuming paragraphs in my head despite watching kittens play quasi-football, I figured perhaps I should write a blog post.
Warning: This post will not end anywhere near where it began.
Now that that’s out of the way, I am going to write that the reason women are susceptible to all this “self-care” bulls*** has nothing at all to do with self care. It has to do with the frustration, anger, hopelessness and exhaustion that comes from struggling in a society that pays women about half of what it pays men for the same jobs. That simultaneously treats women like fragile saints or pariahs with no space in between. That thinks it’s perfectly okay for women in two-income households to shoulder the majority of house keeping and child care while at the same time suspecting them to be incapable of making a large purchase without their husbands in tow, that will punish them by charging them more for things like car repair and loans because there isn’t a Y chromosome around to speak up on their behalf.
It’s a society where sexism, racism, ableism, and cronyism in hiring are allowed to continue unabated under the laughable euphemisms of “good fit” and “right chemistry” that really mean “looks like me.” Women watch men (and BIPOC watch whites) half their age with a tenth of their qualifications get promoted over them by people who move goal posts for the express purpose of hiring some frat brother or son of some frat brother, club member, etc. whose sole qualification is the white appendage in their pants. Where the word nepotism must be expanded to include “any white dude who knows another white dude.”
For the record, I’m not talking about all white men here. I’m talking about the ones who engage in these practices while pretending to do otherwise, and the ones who see this happening, and while they don’t do it themselves, still think that it isn’t a big deal because things “have always been this way,” which might be the stupidest reason for doing anything, ever.
I am blessed to have white men in my life who wouldn’t dream of passing on the best and most qualified person for a position just because they didn’t have the aforementioned appendage or didn’t have it in the right color. In fact, these men have at times expressed frustrated to me about having to deal with incompetent co-workers that were hired for the wrong reasons. They find the whole nepotistic system to be pretty much useless. And because these guys actually see what’s going on, don’t think it’s good for business or anything else, and don’t care what other men think about their decisions (another privilege reserved for members only), these men can paradoxically find themselves excluded from these good ol’ [white] boys clubs just because they had the temerity to buck the party line by hiring someone who didn’t look like them.
Er, isn’t this supposed to be a blog about autism?
Yes, it is a blog about autism. But I am not just an autistic. I am an autistic woman. I still run up against walls built by Eurocentric conceptions of autism develped from studies in male children that continue to pervade the psychiatric and research communities. I’m not allowed to be autistic because I don’t look right or act right; that is, act like the male autistics on TV who are superhuman geniuses that speak in monotones and don’t make eye-contact and flap around in crude imitations of the self-soothing behaviors autistics use to cope in a world designed for non-autistic people.
(That depiction, by the way, is complete fiction. It has nothing to do with the lived experience of being autistic. It’s not even a caricature; it’s totally made up out of whole cloth by non-autistic, so-called experts in autism.)
We live in a society that punishes people who fail to adhere to white, male, Eurocentric culture, and who think of that not as culture, but a default against which everything else is an aberration. Women are punished for not being dependent on men, for acting like men, for engaging in tasks originally performed by men, for being independent of men.
BIPOC are punished for not “knowing their place” alongside centuries of junk science claiming they feel less pain than whites and are naturally more inclined to violence, views that pervade modern society even though they are completely erroneous.
LGBTQIA+ people are punished for not falling into a superimposed cis hetero binary that even animals don’t adhere to.
Disabled people are punished when they don’t hide or compensate for their disability to make other people feel better, for making non-disabled people feel uncomfortable despite the fact that the fault for that discomfort lies in the abled person, not the disabled person.
I live in a society that has a narrowly inscribed default for autism that I am punished for not fitting inside. Even in responses to the articles I write about autism, parents of severely autistic children claim that I’m not “really” autistic and that I have no idea what “real” autism is. And when I try to point out that it is they, and not me, that have no idea what it is like to be autistic, that really rubs their fur the wrong way and then come the personal attacks.
I’m not saying raising an autistic child is easy. Having an autistic child that is non-verbal and/or developmentally delayed is one of the steepest challenges parents can face and I’m not suggesting their kids are like me. (But by the way, not every screaming child pulled out of a restaurant or movie is autistic. Maybe it’s time to cut these parents some slack.)
What I am suggesting is that at least some of the behavior they struggle with, the screaming, the violence, the stimming, is because the child feels not just overwhelmed but not understood. Do we validate the misbehavior of three-year-olds? No. But neurotypical three-years-olds can talk to us and we can listen to them and reassure them. Autistic children who aren’t verbal can’t tell their parents what they’re feeling. Their options for communication are all but non-existent, a frustration in and of itself that I can’t imagine any three-year-old coping with well. I wish ABA therapy focused on finding ways for autistic children children to communicate, even rudimentally, instead of shaming and punishing them for their understandable frustrations.
But in every situation I’ve mentioned in this post, the problem isn’t with the woman, the non-white man, the disabled child, the lesbian. It’s with a society that refuses to validate their membership. We aren’t mad at white, non-disabled, heterosexual men. We are mad because not enough of them understand that there remain historic and indelible barriers to entry that are only visible to the people they exclude, barriers that include decades of both explicit and implicit policies that kept non-white, non-male people from owning homes, from attending college, from accumulating wealth, from having access to good schools, friendly law enforcement, or towns where people don’t lock their doors, barriers that only people who don’t face them can remove. The woman isn’t mad at the useless guy who got promoted over her. She’s mad that this kind of thing still happens in this day and age and no-one in a position to change it seems to care, and there aren’t any vitamin supplements or bath salts that can fix that.
The autistic parent who dismisses me isn’t angry at me. She’s angry at a society that refuses to acknowledge the humanity of her autistic child, that doesn’t want said child in their schools, on their playgrounds, in their quarantine pods, at their birthday parties.
And that’s what this post is about. It’s about shifting the focus and blame away from the people who are harmed by this structure and on to the people who can actually do something about it. Women don’t need scented oils or rose quartz vaginal eggs or supposedly rejuvenating supplements or little pieces of fancy chocolate in gold foil wrappers. They need to be paid what they’re worth, promoted when they deserve it, supported in the home, and not criticized for being insufficiently female.
I don’t need adjudicate what autism is or isn’t. What I need is to be accepted for who I am by a society that has yet to fully acknowledge my existence. That’s what this post, and indeed, this blog, are all about.
For many, this pandemic has been an exercise is making do with a truncated list of unpalatable choices when it comes to work, relationships, and a social life. But this situation has plagued me and autistics like me for most of our lives. Autism consigns one to a life defined by a lack of choices in some of the most essential elements of modern existence, like employment, social group, living arrangement, and even who we want to be. The pandemic has offered neurotypical people a glimpse of what our lives are like, where we nearly always find ourselves in situations with too few options, all of which are suboptimal. The difference is that while neurotypicals are able to make a lot of these choices consciously, autistics are frequently unaware of how autism has blinded them to other options. Similarly, we struggle to navigate the boundaries imposed by a non-autistic society, not seeing them, or if we see them, not understanding them.
I attempted to pursue a career as a singer/songwriter starting in my twenties. This was long before I thought I might be autistic. Nonetheless, my autism meant I wasn’t able to discern when I was being manipulated and made me easy pickings for bad actors. My pathological lack of success in finding people who genuinely wanted to help me, and instead landing with those who just wanted to take advantage of me, demonstrates how autism imposed a lack of agency that was completely invisible to me. Not knowing what I needed to do meant I accepted at face value whatever anyone told me to do, with the lion’s share of those anyones and whatevers being dead ends.
Some suggested I move to a locale with more opportunities, like New York City or Nashville. I remember being terrified at the prospect. I could not conceive of how to handle arriving at one of these places with nothing more than a guitar and the clothes on my back. And although I was completely unaware of it, I was also terrified at the idea of being that far from my parents and sister, who made up the majority of trustworthy people I knew. These realities meant the choice to move somewhere else just wasn’t available to me. (A silver lining here is that in retrospect, it seems unlikely that I would have been successful no matter where I went, because my autism, and its associated gullibility, would have still been with me.)
There was a period around the same time where I washed out of a series of entry-level jobs, like receptionist, salesperson, server, that sort of thing. I would start out well, and then a few months in I would lose focus and start making erroneous assumptions and mistakes. I was drawn to people who seemed to get away with bad behavior, making it seem like bad behavior was not a big deal. I would mimic them, with inevitable negative consequences that were always surprising and always seemed unfair. The problem was me, but I not only didn’t realize it, I wouldn’t have known how to fix it even if I had.
I had the same problems socially, bouncing from group to group, doing well at first, only to have people suddenly start withdrawing from me and shutting me out after a few months without me knowing why. I landed with a group of addicts and alcoholics for whom social ineptitude was far less important than keeping the river of mind-altering substances flowing. They glorified their horrific lifestyles and there I was again, trying to mimic them, not having any idea what the consequences of it might be since I never saw anyone suffer any. I narrowly escaped some dangerous situations, and was lucky that after a few years, I got tired of the whole business, and ducked out and dumped my phone before anything life-changingly bad happened to me.
This meant I had to start over with another new group of friends. I got better at choosing associates as time went on, but my instincts remained unreliable and I was still plagued by bad actors when it came to music. I exerted myself to model good behavior instead of bad, but I didn’t have a scaffold to hang it on. It was just rote memorization and guessing. And my anxiety, no longer smothered by substance [ab]use, became immobilizing. For a year, I suffered from horrible stage fright and was so nervous I could barely perform in front of an audience.
I also still didn’t understand how friendships worked. I didn’t know how to maintain them, and I was afraid to ask for help after so many instances of being burned by people who exacted a toll for “favors.” In my late thirties, having exhausted every possible avenue I could think of and having failed to figure out what I needed to do to be successful, I gave up on the music career altogether.
This led to another social group change, this time with a new boyfriend and his friends and a new line of work, training to be a veterinary nurse. I had more success with this friend group–I’m actually still friends with some of them, including the now ex-boyfriend–but I still had to deal with regular screw-ups that required a ton of apologizing for things, some quite serious, that hadn’t seemed wrong to me. And while I was a good animal nurse, I was still a crappy employee. Another several years were thus invested in another dead end; not only could I not keep a job for more than a year (and often less), I was beset with pain and injuries that made it impossible for me to do the animal wrangling. These were a surprise, too. Many autistics, like me, are generally unaware of their bodies’ internal states. I just pushed myself till I broke, an occurrence I repeated almost a half a dozen times over the last thirty years, and for which I’m still suffering the consequences.
While the first few years with the boyfriend were wonderful, I stayed with him too many years after that because by that time in my life, while I wasn’t sure if I was autistic (although I had started considering it), I had learned that my instincts could not be trusted, and if a kind and loving person thought our relationship should be a certain way I assumed that he was a better judge of the situation than me. Also, he was the first genuinely good man I’d ever been with; someone who didn’t want to take advantage of me, or alternatively, have some major psychological issues of his own, and I was afraid if I left I’d never find anyone else like him. Our first real argument came after nine years, when I was finally able to tell him that I wanted something other than his preferred relationship parameters. We broke up not long after.
I didn’t start privileging what I thought was best for me–and not what other people told me–until my early forties. And while this seems late, I’m not sure I would have been able to figure out what was best for me any sooner. It wasn’t until a few years later that I gave myself permission to treat myself as a person of value. And while I look back on my life and resent the choices I made, the sheer number of instances where my autism kept me from accessing alternatives makes me doubt whether it could have happened any differently. Peers did try to help me, but I couldn’t tell the difference between help and harm. Other people were always opaque jumbles of seemingly unrelated attributes, and well-meaning or no, I didn’t understand them and they didn’t understand me. I didn’t figure out how to start seeking out people who did understand me until relatively recently.
Now I’m in a position where people ask me to explain their autistic children or loved ones to them, and it they’re almost always disappointed. First, since autism affects everyone differently, I’m inherently limited when it comes to specifics. There are as many different forms of autism as there are people on the autism spectrum. Second, the labels people fall back on to try to understand us or contextualize us, like high or low-functioning, verbal or nonverbal, hyperlexic or hypervisual, fail to express what the experience of autism is actually like, including that those labels are the least important differences we have.
What actually makes autistics different is that we experience our internal and external environments in a way that is completely unlike that of non-autistics. But most people don’t know what to do with this information. They want something they can grab on to, a context they can place themselves in so they “get” it. As a result, people who want me to “explain” autism to them are rarely satisfied with what I tell them. I’d rather say “I can’t explain it to you in a way you would understand,” but I have learned that is not something you should say to people.
Sometimes I pivot to the real world implications of autism, that the most important challenges autistics face are the ones imposed by a neurotypical society that punishes us or tries to force us to change when we think or feel or act in ways that feel natural to us. I don’t usually get very far with this, either. The idea that human instincts are not universal and that autistic instincts are vastly different from neurotypical ones, let alone that autistics have to completely suppress their instincts to relate to neurotypicals and that I am suppressing my instincts just to have this conversation with you–it’s all but inconceivable. Neurotypical people rely on their instincts to function. They struggle to imagine something as completely foreign as having to navigate life without them.
But this is how it is. Autistics are trapped in an indelible structure of ableist boundaries that we don’t understand, and this combined with our neurodivergence robs us of the ability to make choices neurotypicals take for granted, like how take care of ourselves, not just the basic needs like personal care or employment, but higher needs, like what kind of life we want to have, where we want to have it, and who we want to be in it.
We just want to be able make these life choices for ourselves. We want someone to explain our choices to us in ways that we understand, not shrouded in suggestions and metaphors and surreptitious judgements that render these choices invisible to us. We want to throw off the narrow confines imposed by employers, peers, families and caregivers of what is “normal” or “appropriate,” of needing to act and speak and even think a certain way so that we don’t upset non-autistic people, so we can work with them, so we can have relationships with them.
I never had a choice about any of those things. From a young age, I received near constant external feedback that the things I did and said, and even felt and thought, were wrong. As an adult, I so craved validating experiences that I created a completely opaque neurotypical mask that covered every natural thing about me, and made sure I was useful in some way to everyone I had a relationship with so they couldn’t stop speaking to me, or shut me out, or disappear. I’m only just now figuring out how to disentangle all that from the person I actually am, with that person still ensconced in the working draft phase. I’m only just now learning to forgive myself for the huge pile of screw-ups I accumulated because autism made it so I didn’t know what else to do; to forgive myself because in far too many of those situations, I didn’t have a choice.
Now that I’m allowing my autism to be a part of who I am, some have referred to me as a role model, much to my dismay, because I strongly advise against signing on for the crippling self-doubt that propelled me to learn to hide my autism so completely. I sacrificed my true self on the altar of a neurotypical ideal for over two decades; I am a poster child for unhealthy, self-defeating coping mechanisms. I’m still trying to figure out how to be social creature in this milieu while maintaining my self-possession, how to break from the negative self-talk that was a precondition for maintaining my social facade. I’m still working on accepting that my real self is not bad or wrong or worthless, after a lifetime of feedback to the contrary.
I sympathize with both sides of the ongoing controversy in the autistic community about whether we should or shouldn’t mask (hide) our autism. Because, you know, of course we shouldn’t have to…but if we want to have any choice in our lives at all, well, hiding is the only option. Our society just isn’t ready to accept people like us yet. It still doesn’t have a lot of good choices for us. Someday it will, I hope, even though it will be far too late for me, and maybe even the generation after me. But, hopefully, someday, because of the choices I’m making now, it will.