normal

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.

Posted in Book Two - Mind, Setting 3 | Tagged , , , , , | Leave a comment

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

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.

https://www.nationalgeographic.com/science/2020/04/coronavirus-zoom-fatigue-is-taxing-the-brain-here-is-why-that-happens/?utm_source=pocket-newtab

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

not like this

Photograph of a four-pane window at the far end of a dark, heavily shadowed hallway

Photo by Laurent Perren on Unsplash

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.

 

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Interview on LearnFromAutistics.com

A screenshot of the opening paragraph of Christine's interview on the Learn From Autistics website

Christine M. Condo’s Interview about Autism, Masking, and Self Care on the Learn From Autistics website

Click the above to read Christine’s interview on the Learn From Autistics website about accommodations , autism coping strategies, and self-care.

 

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you break it, you buy it

A photograph of an elephant walking away from the viewer towards a pool of stones and water

This is my best side

Photo by Sergi Ferrete on Unsplash

It is extremely rare that I come across an article that I think explains a point of view with more clarity and poignancy than I ever could. The article indicated below, however, more than clears that bar.

I have long assumed that the oblivious march toward an alternative reality, wherein experts are disparaged in favor of “hold my beer” jackasses who lie freely about the state of our country and no-one cares because it’s what they want to hear, was unstoppable. I figured by the time America got the other side of this particular phase of ass-hattery I would be long gone.

But the dumpster fire that is the POTUS handling of the coronavirus pandemic may yet finally be the demise of this unfettered obtusity. Despite what certain “news” sources have been insisting for years, it turns out that, actually, you can’t make your own facts. Really.

“Republicans like me built this moment. Then we looked the other way.”

-Stuart Stevens The Washington Post, March 3, 2020.

For those running up against a paywall, here is an associated article that liberally quotes the above that you can read for free:

“The GOP Principles That Paved the Way For Massive Suffering”

-Nancy LeTourneau Washington Monthly, March 23, 2020

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unrelated

A photo of a dog on the outside of glass door looking a cat sitting on the inside of it

Photo by Alexis Chloe on Unsplash

Humans naturally relate each other. It is how we connect. We empathize by relating one of our experiences to that of the person we are engaging with. Shared experiences, such as being on hold with customer service or not finding jeans that fit properly, allow us to bond with our fellows and recognize one another as members of the same tribe. Unfortunately, in the context of autism, efforts by a neurotypical to relate to the experience of someone on the spectrum are not only misguided, but belittling and minimizing. For instance, while a neurotypical person may dislike, even hate, large crowds, an autistic in the same situation would be in fight-or-flight panic mode, unable to hold him or herself together and at risk for a humiliating public breakdown if they can’t escape.

Not the same. Not even close.

Some neurotypicals try to empathize with their autistic peers by mistakenly assuming that autism is just an extreme form of introversion. While I appreciate the attempt to hang the experience on a recognizable scaffold, that is just not how autism works. In fact, some autistics are actually extroverted and don’t like being alone. Strictly speaking, an introverted person needs to be alone to recharge, while an extroverted one is energized by being around people. Neither of these have anything to do with the experience of autism.

Being autistic is so different from the neurotypical experience that it defies our natural inclinations to relate to another person. We autistics cannot imagine what it is like to be neurotypical, although many of us have learned to mimic it, a technique referred to as masking that entails a significant cognitive investment–and comes with a significant psychological downside.

Similarly, the neurotypical cannot imagine what it is like to be autistic. Many autistics themselves are unaware of the depth of difference between their experience of reality and that of those around them. For a neurotypical person, the very idea that an experience of reality fundamentally different from their own exists is virtually impossible to imagine. The social milieu in which we operate is designed by and for a very specific way of thinking, feeling, and reacting. As this is the way the vast majority of people experience this milieu, it is rendered invisible. It is not a manner of being in the world. It is the manner of being in the world, a perception that necessarily precludes the existence of any other.

Before autistics can advocate for what we need, we have to carve out not just how we experience the world differently, but the very fact that such a thing is even possible. In a society designed around relating in, this entails explaining to everyone who asks that a different experience exists before we can describe what this difference is.

This is rendered more challenging by a current lack of terminology therein. (I can only speak for the English language in this respect; feedback from native speakers of other languages would be most appreciated here.) How do we explain the difference between a filtered and unfiltered visual and aural environment? How do we describe the physically painful responses we have to certain stimuli? How do we effectively convey how we shut down when depleted? How do we talk about how painful it is to feel like aliens in our own cultures, unable to engage with our fellow beings the way they engage with each other?

How do we talk about a completely unrelatable experience to our well-meaning peers trying so hard to imagine what it must be like?

I used the word “scaffold” earlier, purposefully. In terms of learning, a scaffold is a structure we build in our minds not to understand something, but to use to understand something. This difference is critical.

No such scaffold exists for autism. A bridge between the neurotypical and autistic internal and external experiences of the world we live in has yet to be built. Before we can establish what the autistic experience is, we have to build a scaffold for it, the core piece of which is an acceptance by neurotypicals that a vastly different experience of reality exists. From there, we can start to lay out what it entails.

Only then will we be able to start creating a place for ourselves in this milieu. Only then will we be able to describe the indescribable. Only then will we have a platform from which to ask for and design experiences built around our unique needs.

Critically, we need neurotypicals to resist the temptation to relate in when we talk about our autism. Instead, we need them to express a willingness to open their minds to a different way of perceiving and feeling the world.

Let the scaffolding begin.

Posted in Book Two - Mind, Setting 3 | Tagged , , , , , , | 1 Comment

plant your flag elsewhere

Recently, a friend tried to convince me of the validity of a new treatment for autism that, as many of these purported treatments do, lacks a plausible explanation for how it works. Nonetheless, I respect the friend and thus did my due diligence with a search of PubMed. Keywords from my friend’s description, together and independently, yielded one, and only one, result, a study of dubious validity from 2018 that was tangentially related. (And before you suggest that PubMed curates the studies that show up in its database, please allow me to point you to the 31,842 studies that show up for the keyword “acupuncture.”)

The point I want to underscore in this case, though, is not the lack of evidence, which was expected, but that the premise underlying this type of research is itself flawed.

Autism is not a disease. As such, you can’t treat it, any more than you can “treat” a person’s sexual orientation or left-handedness. You can treat, or at least teach coping mechanisms for, issues associated with autism, like anxiety, agoraphobia, and sensory sensitivity. However, there is no magic pill or other device that will make autistic people less or non-autistic. While research on the functional underpinnings of the brain is ongoing, researchers are coalescing around the idea that autistic brains function in unique ways, and that such functioning constitutes a difference, not an impairment.

In short, being autistic does not mean something is wrong with you that needs to be fixed. You do not lack functioning. You just function differently.

One of the obstacles to acceptance of this idea is that certain autism “experts” (who are not autistic themselves) still describe features of autism as deficits, such as “lacking” central coherence or “unable” to perceive unspoken information cues.

Such assumptions are entirely a matter of perspective. It is just as accurate to say that non-autistic people tend to overlook small details and that they are impaired in their ability to set aside social custom when necessary. Yes, an autistic person has to exert herself to hide her autism, but a non-autistic person would have to exert themselves at least as much to function autistically.

Considering that scientifically-backed means to help autistics manage their autism-related challenges already exist, such as chewelery (chew toys that grown-ups can wear), sound conditioners, and weighted blankets, I’m not even sure why anyone is still barking up this proverbial tree. Other than the hate-speech group A_____ S_____, the current consensus is that neurodivergence is just that–a divergence. Not a defect.

The lack of connection to medical reality in the procedure touted by my friend was troubling to me from a scientific perspective, and should at least be mentioned, if not harped on in my usual fashion. To whit: there are thousands of peer-reviewed studies by credentialed scientists exploring genes, electrical activity, and receptors related to the autistic brain. It seems unlikely that lay people messing around in this space would unearth something that the legion of scientists studying autism over the last fifty years did not, and I find it upsetting that such activity persists, not just for autism, but for many other conditions, as well.

Setting this soap box aside for time being, though, even couching autism as a disability is problematic. Some disability advocates argue that the term “disabled” has outlived its usefulness, in that it implies that certain traits suggest a lack of ability rather than a non-traditional mechanism for one. Until we can de-center “normal” as the standard against which everyone else is measured, though, disabled is all we’ve got, implications and all.

Whether or not we think of ourselves as disabled, it remains challenging for us to function in an environment designed by and for non-autistic people. But that doesn’t mean there is something wrong with us.

We just see the world differently. If anything, that is an asset, not a flaw. And rather than “treating” it, we should celebrate it.

Posted in Book Two - Mind, Setting 3 | Tagged , , , , , | 1 Comment