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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.
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.
This is not what I wanted.
High-functioning autistics like me who live alone and work from home fight a constant battle against expected levels of socialization. We have to self-limit because of how exhausting it is, and we are constantly apologizing and feeling less than because of it. Over the course of my adulthood, I’ve had to cut out rock concerts, wedding receptions, graduations, amusement parks, arcades, and plenty of other high-stimulus, high-density activities because they inevitably trigger meltdowns, a state of being so completely overwhelmed that it results in physical acting out (I’m a thrower), a temper tantrum, or sobbing, often all at once. (Unsurprisingly, I now avoid risking this humiliating experience when out in public at any cost.)
So you’d think this whole social distancing/no large gatherings thing would be a dream come true, and for the first couple of weeks, it absolutely was. The constant pressure I was under before, to do more than I was able to, was lifted. I no longer had to shut out the potential judgment I might receive for demanding special treatment for my autism, like having the music turned down at a restaurant, or being allowed to wait in a different place from the other patients in a doctor’s office, or not being able to go to a friend’s baby shower. I could putter around doing all my little weird self-care things that enable me to act “natural” in public for the brief periods of time for which it is required and for once not feel guilty about them.
After a month and a half of this, however, I have come to realize that the few and brief social encounters entailed in running my usual errands were a valuable component of my minimal social existence. Even though I resented the expected performance involved in doing them, they were still the lion’s share of my contact with the outside world. As it turns out, a little bit of socialization is vastly different from no socialization at all.
For an autistic, being home alone all the time makes it hard to remember that bathing regularly is still required, as is putting on actual clothing instead of the same sweatpants and t-shirt for days on end. Occasional visits to the grocery store are the only thing keeping me on the straight and narrow regarding personal hygiene. As an experienced work-from-homer, I’ve long since known that teleconferencing only requires a warm-bulb desk lamp, a not-black shirt, and lipstick, all of which can be easily achieved without a shower, deodorant or toothbrush.
Before this happened, every time I left the house I had to put on a fake face and constantly concentrate on not just what I was saying but how I was saying it. Pumping gas, going to the drugstore, ordering coffee, waiting for my dry-cleaning, everything. My whole life was built around making sure I was able to do that when demanded. But now that it isn’t demanded, under the new status quo involves maintaining a six-foot distance and wearing a mask that hides most of my face, the routine has broken down.
Why bother spending time meditating in the morning if I don’t have to steel myself to interact with neurotypical people? Why eat a meal at a certain time if I’m home all day and I can eat whenever I want? Why wear nice but uncomfortable clothes if no-one will see them? (So much for the dry-cleaning.) Why do anything I consider socially prescribed nonsense at all?
Conformation to neurotypical expectations dictated every waking minute of my day, even though very little of it was spent outside my home. Now that the pressure of those expectations has been lifted, I’m bouncing around this apartment like a super ball in an empty racquetball court, moving too quickly and erratically to grab on to anything, to prepare for anything, to settle in any given place. My neurotypical performance was my gravity. I would never have realized it otherwise, but I am adrift without it. It now seems that my trips to the pharmacy, the nail salon, the coffee shop, despite the outsized amount of energy expended in doing them, were incredibly important. I actually miss them, performance and all.
I have yet to find my bearings in a world where compensating for my autism is no longer required. Much as I longed for it before, now that it is here, I am at a loss. As I wait for things to go back to “normal,” at a time that has yet to be defined, I am reminded I have never been good with uncertainty. Now it clings to me like wet air on a humid day. I can’t escape it; I can’t even leave the apartment and leave it here more than the couple of hours every week or two when I venture out, masked and gloved, to re-up on groceries and necessary supplies.
My anxiety over hiding my autism has been replaced by an experience I now share with just about everyone, autistic or otherwise. I can’t shake this feeling of impending disaster that could occur at any time and for which an endpoint can’t even be remotely visualized, never mind assured. For once, I really am just like everyone else.
But this is not what I wanted. Not like this.
Click the above to read Christine’s interview on the Learn From Autistics website about accommodations , autism coping strategies, and self-care.
It is extremely rare that I come across an article that I think explains a point of view with more clarity and poignancy than I ever could. The article indicated below, however, more than clears that bar.
I have long assumed that the oblivious march toward an alternative reality, wherein experts are disparaged in favor of “hold my beer” jackasses who lie freely about the state of our country and no-one cares because it’s what they want to hear, was unstoppable. I figured by the time America got the other side of this particular phase of ass-hattery I would be long gone.
But the dumpster fire that is the POTUS handling of the coronavirus pandemic may yet finally be the demise of this unfettered obtusity. Despite what certain “news” sources have been insisting for years, it turns out that, actually, you can’t make your own facts. Really.
-Stuart Stevens The Washington Post, March 3, 2020.
For those running up against a paywall, here is an associated article that liberally quotes the above that you can read for free:
-Nancy LeTourneau Washington Monthly, March 23, 2020
Humans naturally relate each other. It is how we connect. We empathize by relating one of our experiences to that of the person we are engaging with. Shared experiences, such as being on hold with customer service or not finding jeans that fit properly, allow us to bond with our fellows and recognize one another as members of the same tribe. Unfortunately, in the context of autism, efforts by a neurotypical to relate to the experience of someone on the spectrum are not only misguided, but belittling and minimizing. For instance, while a neurotypical person may dislike, even hate, large crowds, an autistic in the same situation would be in fight-or-flight panic mode, unable to hold him or herself together and at risk for a humiliating public breakdown if they can’t escape.
Not the same. Not even close.
Some neurotypicals try to empathize with their autistic peers by mistakenly assuming that autism is just an extreme form of introversion. While I appreciate the attempt to hang the experience on a recognizable scaffold, that is just not how autism works. In fact, some autistics are actually extroverted and don’t like being alone. Strictly speaking, an introverted person needs to be alone to recharge, while an extroverted one is energized by being around people. Neither of these have anything to do with the experience of autism.
Being autistic is so different from the neurotypical experience that it defies our natural inclinations to relate to another person. We autistics cannot imagine what it is like to be neurotypical, although many of us have learned to mimic it, a technique referred to as masking that entails a significant cognitive investment–and comes with a significant psychological downside.
Similarly, the neurotypical cannot imagine what it is like to be autistic. Many autistics themselves are unaware of the depth of difference between their experience of reality and that of those around them. For a neurotypical person, the very idea that an experience of reality fundamentally different from their own exists is virtually impossible to imagine. The social milieu in which we operate is designed by and for a very specific way of thinking, feeling, and reacting. As this is the way the vast majority of people experience this milieu, it is rendered invisible. It is not a manner of being in the world. It is the manner of being in the world, a perception that necessarily precludes the existence of any other.
Before autistics can advocate for what we need, we have to carve out not just how we experience the world differently, but the very fact that such a thing is even possible. In a society designed around relating in, this entails explaining to everyone who asks that a different experience exists before we can describe what this difference is.
This is rendered more challenging by a current lack of terminology therein. (I can only speak for the English language in this respect; feedback from native speakers of other languages would be most appreciated here.) How do we explain the difference between a filtered and unfiltered visual and aural environment? How do we describe the physically painful responses we have to certain stimuli? How do we effectively convey how we shut down when depleted? How do we talk about how painful it is to feel like aliens in our own cultures, unable to engage with our fellow beings the way they engage with each other?
How do we talk about a completely unrelatable experience to our well-meaning peers trying so hard to imagine what it must be like?
I used the word “scaffold” earlier, purposefully. In terms of learning, a scaffold is a structure we build in our minds not to understand something, but to use to understand something. This difference is critical.
No such scaffold exists for autism. A bridge between the neurotypical and autistic internal and external experiences of the world we live in has yet to be built. Before we can establish what the autistic experience is, we have to build a scaffold for it, the core piece of which is an acceptance by neurotypicals that a vastly different experience of reality exists. From there, we can start to lay out what it entails.
Only then will we be able to start creating a place for ourselves in this milieu. Only then will we be able to describe the indescribable. Only then will we have a platform from which to ask for and design experiences built around our unique needs.
Critically, we need neurotypicals to resist the temptation to relate in when we talk about our autism. Instead, we need them to express a willingness to open their minds to a different way of perceiving and feeling the world.
Let the scaffolding begin.
Recently, a friend tried to convince me of the validity of a new treatment for autism that, as many of these purported treatments do, lacks a plausible explanation for how it works. Nonetheless, I respect the friend and thus did my due diligence with a search of PubMed. Keywords from my friend’s description, together and independently, yielded one, and only one, result, a study of dubious validity from 2018 that was tangentially related. (And before you suggest that PubMed curates the studies that show up in its database, please allow me to point you to the 31,842 studies that show up for the keyword “acupuncture.”)
The point I want to underscore in this case, though, is not the lack of evidence, which was expected, but that the premise underlying this type of research is itself flawed.
Autism is not a disease. As such, you can’t treat it, any more than you can “treat” a person’s sexual orientation or left-handedness. You can treat, or at least teach coping mechanisms for, issues associated with autism, like anxiety, agoraphobia, and sensory sensitivity. However, there is no magic pill or other device that will make autistic people less or non-autistic. While research on the functional underpinnings of the brain is ongoing, researchers are coalescing around the idea that autistic brains function in unique ways, and that such functioning constitutes a difference, not an impairment.
In short, being autistic does not mean something is wrong with you that needs to be fixed. You do not lack functioning. You just function differently.
One of the obstacles to acceptance of this idea is that certain autism “experts” (who are not autistic themselves) still describe features of autism as deficits, such as “lacking” central coherence or “unable” to perceive unspoken information cues.
Such assumptions are entirely a matter of perspective. It is just as accurate to say that non-autistic people tend to overlook small details and that they are impaired in their ability to set aside social custom when necessary. Yes, an autistic person has to exert herself to hide her autism, but a non-autistic person would have to exert themselves at least as much to function autistically.
Considering that scientifically-backed means to help autistics manage their autism-related challenges already exist, such as chewelery (chew toys that grown-ups can wear), sound conditioners, and weighted blankets, I’m not even sure why anyone is still barking up this proverbial tree. Other than the hate-speech group A_____ S_____, the current consensus is that neurodivergence is just that–a divergence. Not a defect.
The lack of connection to medical reality in the procedure touted by my friend was troubling to me from a scientific perspective, and should at least be mentioned, if not harped on in my usual fashion. To whit: there are thousands of peer-reviewed studies by credentialed scientists exploring genes, electrical activity, and receptors related to the autistic brain. It seems unlikely that lay people messing around in this space would unearth something that the legion of scientists studying autism over the last fifty years did not, and I find it upsetting that such activity persists, not just for autism, but for many other conditions, as well.
Setting this soap box aside for time being, though, even couching autism as a disability is problematic. Some disability advocates argue that the term “disabled” has outlived its usefulness, in that it implies that certain traits suggest a lack of ability rather than a non-traditional mechanism for one. Until we can de-center “normal” as the standard against which everyone else is measured, though, disabled is all we’ve got, implications and all.
Whether or not we think of ourselves as disabled, it remains challenging for us to function in an environment designed by and for non-autistic people. But that doesn’t mean there is something wrong with us.
We just see the world differently. If anything, that is an asset, not a flaw. And rather than “treating” it, we should celebrate it.
If you’re autistic, you know exactly the look I’m talking about. It’s the one you get from a neurotypical person when you step outside the prescribed boundaries for casual interaction. You’ll be going along hiding your autism well enough and then suddenly something you say is a miss and you lose them. There are more ways for this to happen than I’m sure I know, but common missteps include introducing what you think is a related topic but isn’t, or failing realize that someone is making a joke, or thinking someone is kidding when they aren’t.
It only takes one small error and there is that look. It is a mixture of what appears to be (of course, I never know for sure) a mix of befuddlement and distaste, and maybe even tinged with a little fear. The game is over; they see my mask for what it is. They have realized that what they thought was a nice normal dog is in fact a barely socialized hyena liable to bite them at any moment. They are often at a loss for words. The way they look at me is painful. For both of us.
It’s painful for them because I have cut them adrift from socially inscribed rules of shared context and understanding. The loss of common ground renders them as uncertain in that moment as we autistics are all the time. It’s painful for me because I am usually exerting myself as much as possible to keep it from happening, and when it happens anyway, I feel like a failure.
For the record, most people, autistics included, do not like to make others uncomfortable. Those of us on the spectrum already feel so isolated, so imprisoned by our autism, that we will do almost anything to make a connection with those around us, even if it means hiding our true selves and pretending we’re someone we’re not. Most of us have spent most of our lives trying to figure out, through a laborious process of elimination, how not to upset or alienate our non-autistic peers.
When even these well-practiced and highly refined strategies are nonetheless found wanting, it is incredibly demoralizing. Just once, I wish I could run an errand and not have to present a fake facial expression and fake tone of voice, professing a fake interest in things I could not care less about if I tried. But the me that doesn’t do that has long since been beaten into submission and locked away where it can’t do any more damage, to other people or to myself.
And I keep running up against how I feel about it and how to get past it. In the one sense, it seems cruelly unfair that I have to play let’s pretend every time I answer the phone or leave the apartment or get out of my car. On the other, I am deeply sad that my real inner self will rarely been seen and even more rarely validated, and I desperately wish things were different, and that I either wasn’t autistic, or didn’t have to hide it any more.
And I know–I know–that not having to hide my autism is a goal that is unlikely to be realized in my lifetime, and that those and others like me have to plow this road in hopes that the next generation of autistics can be more authentic than we will ever be able to be.
But I’m so tired. I’m tired of having to play this stupid game and I’m tired of having to deal with the consequences of an adult life wherein the only way I can work and socialize and make friends, with vanishingly few exceptions, is by presenting a made-up, inauthentic personality that must be consciously maintained, because if I slip up even in a tiny way, I get that look. The look that reminds me, in no uncertain terms, that I am not like other people, and that I never will be.
Despite the fact that the subtleties of unspoken communication are not visible to autistics, that look is unmistakable. It is vastly different from the normal set of facial expressions I’ve learned to imitate. It is equal parts self-doubt and distaste. For a long time, I didn’t realize what the look meant. It didn’t start to dawn on me until I was well into the coping mechanism-development stage of my life, probably around my early thirties. Now, though, I recognize it immediately, and have belatedly come to realize that I have seen it, time and again, for years and years, and that it will be something that never stops happening, no matter how good I get at this neurotypical disguise I have so painstakingly cultivated.
I can’t stop now. But there’s still a little voice in my head that wishes I didn’t have to, and that I am not only incapable of doing anything to change the way things are, I am delusional in thinking that such change is even possible. And I wish I could just crawl under my weighted blanket and not have to do any of it, ever.
It’s hard, sometimes, for those of us on the spectrum to decide whether or not we ought to or want to do something. We’re not especially familiar with how either of those things feel. So for me, I think about how I might feel ten or twenty years from now if I hadn’t done it. If I’m OK with it, then that answers my question.
If I’m not OK with it…well, that does, too. And that’s where I am. I wish it were different, but the only way to make it so is to pick up the ball and carry it a few more yards downfield. So that’s what I do.
To my esteemed readers: In this challenging time, I would like to encourage you to seek out and donate to your local food banks if you are able. You can go to this website to locate one in your area. Thanks! -TGA