My weekly roundup of responses I have posted to other people’s posts here on Medium, for those who don’t feel like scrolling through the Responses tab on my profile.
April 10, 2018
I think it’s helpful for my particular brain to have a device that encourages the consumption of ideas without demanding any output on my part.
For me this is my Kindle Paperwhite. While the smartphone more generally has had a wider impact, I regularly point to my Paperwhite as my favorite device. It completely changed both the way I read and the amount I read, both because now I could easily carry around more than one book at a time (I’m always reading one fiction and one non-fiction), and because now I could read while on the bus (the curved paper of a book, when jostling to the movement of a vehicle, was a kind of sensory stressor, although I didn’t know that; the flat display of the Kindle, which moves as a piece, isn’t). Being able to read more often in more places and never feel like the book I thought to bring with me isn’t the right thing for my brain after all, these things have been a godsend.
April 11, 2018
The psychological strain of entering adulthood with no explanation for what is wrong with you, without even being able to admit something is wrong, without access to any support, and with a mask forever fixed on your face cannot be underestimated.
My diagnosis came in my late 40s, and only after family agitation to go find out if there were, in fact diagnosable reasons for various aspects of my life. Agitation I resisted partly because one family member has a habit of engaging in what I like to call “projected hypochondria”, and partly because the potential for a diagnosable issue still sounded to me like being broken. (Which, in the end, is ridiculous, because even if you’re wedded to that misconception, it’s still better to know just what sort of broken you are.) When my psychotherapist first handed to me her “diagnostic impressions”, what I mostly felt was nervous relief. “So now,” I wrote online at the time, “I have boxes to put things in and be able to look at them.”
Autism Spectrum Disorder (ASD) is a developmental condition that’s thought to be primarily expressed through differences in socializing, communicating, and repetitive behavior. Lesser known are its effects on executive functioning(EF) — which can be defined as a transit map in our brains that tell us how to plan and organize, keep track of time, and remember information in the moment.
I am trying to remember whether or not the issue of Executive Function has come up in therapy; I’ll ask next time. But outside of potential impacts such as “maybe both cleaning and cooking are not possible in one day, as each depletre so much energy”, I feel like an inability to “remember information in the moment” must actually comingle with issues of socializing and communicating. I think for me it certainly is at issue with my intense dislike of phone conversastions. I think, too, it must have played a role in why, when I covered local Portland politics for three years, I never conducted interviews; not, perhaps, only an autistic issue with synchronous, face-to-face social interaction, but as well an issue with simply not being capable of rendering real-time judgements on what, say, an elected official might tell me as it would compare to some factual matter I’d have known but never would have been able to recall in the moment, rendering such an interview useless as journalism.
April 12, 2018
Autistic people infamously struggle with social rules, but a lot of that has to do with our unflinching literality and rationality. We don’t always understand why people would schedule an in-person meeting, when a series of short emails would do.
I just recently left a job I’d been at for six months, one found through my state’s Vocational Rehabilitation services. The story of the job is for another time, perhaps, but for the latter half of these six months, as I reported being under greater and greater stresses to my mental health, the refrain from both my VR caseworker and the job coach they’d assigned me was the same: Let’s have a meeting. The suggestion would stop me dead in my tracks. Did the two of them somehow manage to miss my diagnoses? The ones that led me to VR to begin with? That my autism manifests as “moderate impairment in social communication”? That maybe, just maybe “severe anxiety, cognitive and behavioral rigidity, and social impairments” is a recipe for disaster if I am under increasing stress and you want me to have a face-to-face meeting? These questions went unresolved, as the more immediate need was to extricate myself from the job and take time for (in the word of my therapist) “for restoration of [my] depleted psychological/emotional resources”. At some point, I likely will return to try working with VR again, if the goal remains attempting to return to the workforce, but I am leaving for some other day the issue of whether or not to try working with the same people.
Many times I have wondered if I was worsening my condition by keeping up this high-functioning facade at all costs. I scrape by, but what’s in it for me? Most of the time I tell myself it’s a good thing if I manage to do what’s expected of me (by others and myself). But is this me? No, I don’t have multiple selves that swap depending on how severe my depression is. What I mean is that I wonder for whom I’m doing it. It’s clearly not saving me from relapsing into severe depression and anxiety and it’s costing me all the energy I’ve got. Should I aim lower and not even attempt to ‘function well’?
We’re not, in my case, talking about depression, but I found this passage especially resonant. It’s almost exactly, I think, why I made myself suffer through six months of a job that was steadily degrading the state of my mental health. I’d felt a need to appear both responsible in and responsive to the Vocational Rehabilitation process that found me the job. This, of course, prompts the question, “Appear to whom?” I knew I was hurting, I knew it was getting worse. But after years of not being self-sufficient, it seemed to me like I had to accept my job coach pushing me toward a job opportunity that came up before we were finished doing our job development work. (In synchronous social communication, my fastest route out of the pain of engaging in it often is to assent and be deferential, even if what I am assenting to will hurt me more in the long run.) It seemed to me like I had to accept new and challenging responsibilities at work, even on a trial basis, because otherwise I might be judged not to be taking the attempt to become (more) self-sufficient seriously. (And, again, these asks typically would come as face-to-face requests.) I’ve gotten out of that job, and that VR process. The larger questions posed by the quoted passage above remain unresolved.
April 13, 2018
He hated surprises. He likes to know what the schedule is ahead of time so he can mentally prepare for it. I was foolishly thinking it would be a treat because that it is how I thought of it.
I’ve had to have a couple of conversations with a family member about this, in my case around buying and sending me things when I was entirely uninvolved in the decision. A lack of control when it comes to things coming into my life, and my home, for lack of a better term, drives me crazy. (Specifically, it causes an anxiety spike.) It’s difficult to convince people that their intent is irrelevant to the harm. But the simple matter is that unless, for example, I’ve put something on an online wishlist, sending me something out of nowhere might make the other person feel helpful but in reality has the opposite effect on me.
It turns out that allistic observers are at least as bad at reading autistic expressions as vice versa. Milton labels this the ‘double empathy problem’: any failure of autistic people to empathise effectively with the rest of the population is magnified by the routine failure of allistic people to understand what autistic people are actually feeling.
This is sort of a big one for me: the idea that all of the burden is on the autistic person to make adjustments and figure out how to navigate. As I’ve tried to figure out where in my own head to put the various things I’m dealing with since my diagnosis, I’ve become a big proponent of transparency when it comes to that diagnosis and the world around me. I know there’s some dispute between parties on whether to call this a “disorder” or a “condition”, but really I just feel it’s just that my mind is ordered differently. And I feel it’s not merely my responsibility to make adjustments, it’s everyone else’s, too.
There are many careers paths I could never successfully follow, and workplaces I could never inhabit. Frustratingly, this is not due to a lack of interest, motivation, or skill, but because I’m not good at existing in a milieu where small talk, meetings, ambient noise, and social politics are abundant.
At of the end of March, I once again am unemployed, after a six-month experiment being placed in employment by my state’s Vocational Rehabilitation program. It was clear to me within the first two months that the situation there was untenable. “I can do the work,” I explained to people, “but I can’t do the job.” It very much was a matter of “small talk, meetings, ambient noise, and social politics” (although, for me, ambient noise isn’t as much of a problem as it seems to be for others). I’ve contrasted it with what at this point I consider my Platonic ideal: the six-month temporary job I once had at the Powell’s warehouse, where I spent the first half of the day unpacking boxes sent in to the online book-buy program, and the second half of the day pulling Internet orders. It was the same thing every day, no one bothered you about you work or had any reason to think they should. No small talk, no meetings, no social politics. Just putting your head down, doing the work, and going home.
April 14, 2018
The guy at the café playing Duolingo on his phone is jabbing me in the stomach with his auditory rudeness.
This one is interesting to me because while I don’t, for whatever reason, seem to have the acute sensory issues others do, I find it very difficult to deal with being in a public environment where people are using electronic devices without headphones. It’s not clear to me if this is a sensory issue or a rigid sense of right and wrong issue or what. I’m most afflicted on public transit or at bars and cafes, where I tend to be trying to concentrate on reading. I’m pretty good at filtering out the general hubbub of such places, but not at filtering out this particular behavior. Generally it makes me want either to scream that headphones can be had for a buck at the Dollar Tree, or to play something on my own phone with the volume all the way up and see what happens.
Tell friends and family about what you are going through. Your story might be the push that encourages others to ask for help.
I made a conscious and deliberate decision early on that I was going to live my diagnoses publicly. Not, really, so much for the benefit of other people as for my own. As I’ve said elsewhere, I feel it’s not merely my responsibility to make adjustments, it’s everyone else’s, too, and that can’t happen without openness and transparency. Which is not to say that living one’s diagnoses publicly is for everyone. But I have had conversations about mental health issues even with people I otherwise dislike or have had trouble dealing with, and agreed that one of the most important things to realize is that there are more people around you than you think going through their own mental health struggles, and if even a sliver of that truth can be acknowledged, everyone is going to be better off.
Eye contact actually hurts me. If I meet the eyes of another and hold their gaze for more than a microsecond, I experience sharp discomfort throughout my entire body. When making eye contact, I also feel that my very soul has been laid bare — that my every inner thought is on display, and that my mind can be read and my secrets made public. The best I way can explain it is that it’s like being opened up totally from the inside out for all to see.
One of my biggest regrets right now is that the last place from which I ordered eyeglasses did not tint their lenses beyond 70%. My prior prescription sunglasses were at least 80% if not 90% and they were a godsend. In most lighting conditions, I was able to orient my head toward someone in the perfect semblance of eye contact without them being able to notice that I was not, in fact, making eye contact with them. The next time my prescription changes, I need to get this right, because eye contact is, indeed, horrible. I do agree with what it says elsewhere in this same piece: we should teach “that some people will look you in the eye when they talk to you, and some will not”.
Many of us find the companionship of animals helpful for distracting us when we’re having negative thought patterns. The use of emotional support animals is on the rise in our community because so many of us find they make a difference in the quality of our mental health.
I just recently got confirmation from my psychotherapist that my two cats would qualify as emotional support animals for housing purposes, something I was hoping to get squared away before my next move, just in case. But this also is where I explain the “urban goatherd” part of my biographical blurb here. For five years now I’ve been involved with The Belmont Goats (“Portland’s nonprofit resident herd, offering an oasis of rural community amidst the built, urban environment”). From the beginning, visitors to the herd have referred to it as their “goat therapy”, and that’s certainly been the case for me. In addition, while I have nearly zero interest in social interaction, I also understand that, for better or worse, complete isolation isn’t really how human beings are wired; being project manager for this nonprofit, and frequent host of our public visiting hours, requires me to interact with a fairly wide range of people. What makes this possible, in the end, is that I am interacting with people about something I care about, and something I know about. There’s not a lot of random chatter; it’s all about the goats. While that’s still frequently no small challenge, sharing a therapeutic, animal-focused environment with the public has some inherent advantages.