Were I to title a post about Prime Video’s new autism-centric As We See It, I’d title it, “We need to talk about Mandy.” For someone who I guess wants to specialize in autism care, she seems sort of all over the map, in some fairly bad ways. Spoilers within for the entire season.

This is about occupational burnout but its premise had me thinking about ways in which autistic burnout is and isn’t similar.

Re: Greetings from The Fixin’ To

Below is the text of an email I sent to The Fixin’ To, a local venue just over a block away; they’d taped to the main house out front a letter of outreach to their neighbors.

I’m catching up on research about being autistic during the pandemic, and this one has something I’m sort of glad I hadn’t seen previously, as it would have been a profound source of anxiety.

This study made me think about the last time I tried eating out during the pandemic, just after my county had risen a level and allowed limited indoor dining. It was very uncomfortable, and I couldn’t settle in. Only later did I realize that, counter-intuitively, a mostly empty, somewhat cavernous restaurant with music playing and only three other tables somehow was more of a sensory distraction than that same restaurant when packed with customers. It’s as if a full house becomes something of a single background din, but a mostly empty house becomes all loud and distracting echoes.

My brain finally unlocked from it’s track of trying to find a general-purpose replacement for Evernote, where I’ve been cataloguing autism research papers, and started looking for purpose-build research organizing apps. I’ve landed on Papers.

In case anyone out there is wondering how things are going in the “problematic world to be in versus my reservoir of resources” department, here’s the email I just sent to my therapist.

I just wanted to pull out for notice one particular result in this study.

As near as I can recall, I’ve never had a dream about being autistic. Until early this morning.

L. M. Sacasas in January 2021:

I just took a SPARK survey about sound sensitivities and health and like most surveys it frustrated me with the phrasing of its questions. Let’s take just one example.

I am trying to understand whether it would be a medical or psychological determination to determine whether or not I’ve officially got dyspraxia/developmental coordination disorder. I don’t typically have issues with fine-motor (with the exception of my intermittent motor flubs; I can generally use tools and tie my shoe-laces), but gross-motor especially when it comes to tasks requiring real coordination/multi-tasking (e.g. sports, or driving a car/riding a bike) I’ve definitely got difficulty with. It keeps coming up because I certainly identify with much of dyspraxia/DCD, and given that not everyone understands that autism itself can come with multitasking and motor issues, I wonder if I’ve enough overlap with dyspraxia/DCD features to warrant looking at a separate diagnosis of that, in which case I need to know whether that’s a behavioral health diagnosis or a medical diagnosis.

A week and a half ago, a week into taking antibiotics for a UTI, I got a sudden and recurring nosebleed. Then there’s today, where several days into taking antibiotics for (another? the same?) UTI, some spotting on a Kleenex made me worry I was again having a mystery nosebleed so I spent half an hour pinching and icing my nose while my anxiety spiked, because I just can’t. And by can’t, I mean that I felt full well that if I had to go to the doctor again, I wasn’t going to be able to do it without help. And there’s no help to call upon.

The message i just sent to the Kaiser advice nurse line.

Halfway through the course of antibiotics for (yes) my second UTI in three weeks (or potentially the same one that maybe didn’t get knocked out by the first ten days on antibiotics). I am constantly tired, and feel like I don’t fit inside my body correctly, and no individual moment of enjoyment (reading, bingeing a show, whatever) collects with any others to become a general sense of enjoying life writ large, and my interoception deficits mean increased cognitive load trying to monitor what I feel in my body (e.g. is that back ache high up where I carry tension or low and to the side where they worry about kidney stuff), which just increases anxiety and makes me all the more tired, both physically and existentially.

So far my 2021 has been losing a filling, scheduling dental work, waking up to a UTI, postponing the dental work, waking up to a recurring nosebleed, rescheduling the dental work, getting the dental work, and then waking up to another UTI. Two of these happening on Fridays and interfering with my weekly therapy session. I am ever closer to my wits’ end.

I admit I believe in retail therapy. Does it count if getting something new is basically free? My phone lease is early-upgrade eligible so I am switching from iPhone 11 to iPhone 12 Mini. I’m wondering if on top of having quit social media a smaller device will seem less intrusive and even less of a thing to “camp out” on. I’ve some concerns about how editing a photo in Lightroom will feel on it. I’m looking forward to being able to use swipe-style typing, which I didn’t even know was a thing until last year, more often because the narrower width brings the entire keyboard within easy thumb reach.

No:

Here’s a question: not long after my diagnosis at 46 (well, the day before I turned 47), I remember coming across several instances of anecdata about late-diagnosed autistics becoming “more autistic” (for lack of a more artful term) after that diagnosis. I’d written about it myself, saying it was either like a dam opening up, or like there were electrical breakers that flipped.

No. It’s not at all a sign of progress for someone to misidentify their weirdness as autism.

This:

Today’s random realization, via my remembering that autistic sensory sensitivities can be to both external and internal stimuli, is that the dramatic fatigue I often experience between 3pm and 6pm likely is that afternoon slowdown many people experience but I seem to be more susceptible to needing to fall down; eating carbs doesn’t really help me. Like many autistic sensitivities, my reaction seems “out of proportion” (by typical standards) to the instigating stimulus. This realization came to mind because as I’m fighting off a urinary tract infection, I get not only fatigued between 3pm and 6pm but I get chills—my already-taxed system from dealing with infection is rearing a symptom when that system hits a natural sensitivity that already presents as fatigue.

That feel when either you’re becoming “more autistic” or the world is working overtime to make it harder to go about your daily living. To the point that your body itself starts to act like it’s not sitting right on your bones.

I’ve got so much to say about this that I don’t even have the capacity right now to do it, but you know I’ve got a thing for the question of the autistic brain’s perception of trauma, and this particular paper set me off down several paths I’m going to get into during Monday’s postponed therapy session.

In all of the things I’ve read about self-advocacy in the autism community, I’ve never once read that for all intents and purposes the I/DD self-advocacy movement started here in Oregon with People First. It took this episode of Oregon Experience to tell me that.

I have to say, I don’t appreciate the casual conflation in Divergent Mind of real disabilities with “temperaments”, at least in the context of the workplace. I’m all for a wider, more general social acceptance of human difference, but the last thing people who require disability accommodation need is opening the door to having their concerns dismissed as mere “temperament” and so not legally covered by disability law. There’s no such thing as “temperament rights”.

I’ve been mapping out my self-care plan for next year in advance: to read all of Kurt Vonnegut’s novels; I’ve read most of them before but there’s a handful of unread ones.

They answered my question on how the hell they are able to give an actual, specific spoons count.

It’s important to note that much of the advice in this piece is specific to the U.K. For example, in the U.S. there is no “exemption” from mask wearing in the sense that you can just run around without a mask doing all the things masked people are doing. Rather, in the U.S., stores, for example, are required to make some form of accommodation—such as offering curbside pickup or grocery delivery. You simply can’t not wear a mask and then insist everyone around you, businesses included, just let you do that “because autism”.

Hot on the heels of that Australian review of research on autism interventions comes this lay summary of a similar such review, by its own authors.

I don’t need to be celebrated. I just need not to be left behind in a ditch.

Am I the only one who read this and thought that it’s not that autistic people lack the ability to know what other people are thinking but simply that we first have to actively suppress what we know to be factually true in order to interrogate what someone else is thinking about a situation?

Literally I was just yesterday talking about this with my therapist, except it was in the context of autistic allies trying to shift the focus on autism as only about high-support-needs people to a focus on autistics as a nascent economic boon for business hiring. What about, I asked, those of us who simply appear not to be consistently employable at all? Are we then simply to be deemed worthless, and because of our very failure to be of economic use also deemed to be unworthy of financial supports?

This one paragraph renders the rest of this study completely meaningless and of no use whatsoever except if taken as guidance to question every early “intervention” for autism.

I know this is pinned already but I always want to reblog it when I see it.

It would be unreasonable to suggest that housing construction generate neither noise nor vibration, but it’d also be unreasonable to suggest I spend eight hours a day wearing ear defenders in my own home, especially during another pandemic lockdown when there’s nowhere else for me to go. The least I can ask for is advance notice of what days will bring the noise and vibration. I won’t take odds on even that least being denied me. What do other people do, exactly, when the only mitigation available to you—noise cancellation—itself creates other issues (e.g. the physical irritating of ear defenders when worn for long periods of time). It’s hard for me not to see this situation as a metaphor for what generally awaits me for the rest of my life.

This blog has a new subhed: Some of us are neither high support needs nor savant polymaths. As the pendulum swings between coverage of autism as the one to coverage of autism as the other, people like me just get clobbered in the head as the bob goes by.

I find it unsurprising and disappointing that Camilla Pang’s book Explaining Humans was retitled for the United States as An Outsider’s Guide to Humans.

Oh god. A manifesto for Aspie Supremacy and autism as a superpower. What about those of us thoroughly mediocre autistics who don’t have “the unique skills and talents of autistic individuals”? Just leave us to end up on the streets at some point, I guess.

Technology keeps showing people what it’s like to be actually-autistic. First it was Zoom Fatigue giving neurotypicals a dose of sensory processing and social communication difficulties, then it was being stuck working from home causing task-switching problems, and now comes so-called “affective computing” forcing upon you the right way to emote.

Colin Nagy describes yet another way in which people grappling with life under the pandemic are discovering what it’s like to be autistic. First, it was the sensory hell of so-called “Zoom fatigue”. Now, the need for “cognitive transition”.

I’ve been trying once again to nail down a fixed set of things to have for each meal, and I realized that I don’t think I ever had anyone specifically explain to me, really, what you should be eating for breakfast, what you should be eating for lunch, and what you should be eating for dinner. By which I mean, I gather that one’s body needs different sorts of things at different parts of the day, to an extent, and how would one go about making that map for oneself. So, I’ve just emailed my primary care physician at Kaiser to ask about nutritionists or dietitians or whatever. (No, this is not an open solicitation for advice; it’s a life update.) I’m pointing myself toward an authoritative discussion with someone who’s job is to know these things, and who can apply an autistic filter to the conversation.

Today’s psychoconsult in part involved me explaining that I don’t really know how to talk about the idea of “happiness” because the socially normative definitions tend to involve either a great degree or energetic excitation or things like friends, family, or significant others—or some combination of these two sets of things and ideas. I said I wasn’t sure, looking back at my two years using a mood-tracking app (discontinued months ago because it had become every bit the addiction-like encumbrance that checking into things on Foursquare used to be), whether I never had any use for the Great level (out of Great, Good, Meh, Bad, Awful) because nothing’s ever great or because that normative background radiation of what great looks like just doesn’t match what I or my brain want or enjoy. I’ve plenty of things, of course, which I enjoy, but many if not most of them are relatively solitary. Norms, were they to hear this, would look at me with some sort of pity in their eyes. I am trying to become more conscious of the idea that yeah fuck them anyway, then.

What I recognize most in this piece is the idea that not only have my autistic special interests changed over time, but when I’m finished with them I’m often finished with them, period.

It turns out that being autistic itself seems to come with autobiographical memory issues. The way they are described here nonetheless suggests to me that I’ve also independent such issues related to aphantasia (there’s discussion in this paper of the importance of imagery to memory storage).

This is a pretty good post by Erin Bulluss, Ph.D., and Abby Sesterka about autistic burnout and the idea of trying to find one’s way to “doing less” in order to conserve resources.

Maybe because we finally talked about aphantasia and autobiographical memory deficiencies in therapy the other day, today I found myself thinking about my thoughts on derailment and wondering to what degree my general lack of a sense of constancy of self in fact is due to those two things. I wish I knew how far back my sense of self extends, and where the cutoff is at which it ceases.

Today’s psychoconsult: why I visit the zoo (it’s a routine, familiar, physical and psychic space out of the day-to-day context), self-employment versus otherwise (it’s only in the last decade that I stopped bouncing checks, due in part to the rise of the smartphone as a tool to do what my brain wasn’t, and also I don’t need the additional financial responsibility, and also some degree of external structure can be helpful), and the potential impact of aphantasia and autobiographical memory deficiencies on traditional mental planning (I might need a custom toolbox).

So I don’t know if I’m becoming more sensorily sensitive in general or if I’m just in a period of low-level but ever-present cognitive roiling which thins my psychic skin, but lately I am having intense difficulty with neighborhood noises and sounds. It doesn’t matter if it’s sidewalk-breaking construction noise or the sounds of the neighbor who listens to his loud television through his open door while he sits outside and hacks up a lung over a cigarette. I can feel my body physically tensing against them as if readying for a bodily blow from a physical force.

I hadn’t realized that I’d quit Twitter and Instagram to protect my sanity (disclaimer: quitting comes with its own psychological challenges) in the middle of the week which wraps up with World Mental Health Day. For the record, so far I’m autism spectrum disorder, anxiety, obsessive-compulsive disorder, and adjustment disorder.

This one let me know early that I would get angry about it. By which I mean by the second sentence.

Mental health update from your Mediocre Autistic: I just completely deleted both Twitter and Instagram.

I’ve basically stopped blogging even autism stuff (at least for now), but if anyone’s interested I just made public my Evernote notebook of the autism papers I’ve been reading and making highlights in.

I’m struck by “looking around at all the items that have been background noise for four years and foregrounding them, assessing them, deciding whether to hold on or let go” mostly because this is how I’ve felt in the wake of a midlife autism diagnosis. That undiagnosed thing being a sort of “background noise” I didn’t even ever know was there. Midlife diagnosis of any lifelong condition, I suppose, feel like this: like a retcon of one’s own life. Everything, or mostly everything, gets reassessed.

Well, they got it partly right: yes, ditch the use of “Asperger’s”, but also ditch the use of “high-functioning”.

Until a couple years ago, I was a devout watcher of Big Brother. Until yesterday, I didn’t know there was an autistic houseguest right now, and outside of this nonsense I wonder what I’d have thought of him had I been watching. I know what I think of his fellow houseguests.

Unlike most of the autistic people in this piece, I generally “don’t want friends, have little social motivation and prefer a life of self-isolation”—but I also note that “incidental human contact” is the thing that the pandemic choked off for me, until businesses started being able to open for takeout or outdoor seating.

I’ve quibbles, but on the whole was impressed by this look at deliberately neurodiverse classrooms. As with most such things, I do find myself wondering if it’s an accurate depiction? And as with some such things, I found myself noticing that a teaching approach that seems to work well for quote-unquote edge cases sure seems like it a good model to replicate for, you know, teaching writ large. I got a little judgmental at the “helping the kids learn how to focus on the eyes”, but it’s not clear to me to what degree they simply are teaching autistic kids where the signals are in social communication with neurotypicals versus outright teaching them that they must make eye contact; the former is smart, the latter cruel.

Yesterday’s low partly yielded to the infusion of Apple Cash which paid for kung pao beef from the Chinese place up the street from me. Yesterday’s low also nonetheless took so much out of me that today I had to defer until tomorrow (hopefully?) the necessary grocery errand to replace all the food I had to throw out due to the 19-hour power outage. Today so far has been slightly sleeping in, sitting outside Sparrow Bakery to read with a latte and a cinnamon knot, and then sitting at home listening to the Jdu Dench episode of David Tennant Does a Podcast With, which until the other day I’d no idea existed and it becomes the first podcast since The Good Place: The Podcast whose old episodes I will go back and get.

Today I got low. I don’t even have the resources to go into it in any detail. Suffice to say that the perfect storm of nineteen hours without electricity, the pandemic meaning there was nowhere I could go and sit with power and maybe internet, and needing to throw out at least a week’s worth of SNAP-purchased groceries—I was having not just a psychological problem in the moment but also because the moment starkly reminded me of just how financially precarious and unstable I am and therehow how generally screwed is my entire future.

In the “Skyscraper: Vanity and Violence” chapter of Stephen Graham’s Vertical there’s a reference to Maria Kaika’s conception of what she termed “autistic architecture”—taken, I discovered, from this paper in Environment and Planning D: Society and Space from 2011.

Today’s achievement: convincing myself I could interrupt the Safeway staffer in the bakery department to ask if they’d slice one of the sourdough rounds for me. It did require running the conversation through in my head a few times first. Now I get to reward myself with a grilled cheese sandwich: provolone and aged white cheddar on sourdough.

My quibble with this Autism in Adulthood commentary on alternatives to ableist language technically isn’t with the commentary itself, per se, so much as with how “on the spectrum”—a term I dislike—is defined.

On the one hand, I find this study of the sensory features of being autistic interesting; on the other hand, I’m always skeptical of research in which “the results were derived using a single parent-report measure of sensory features” rather than (as the authors themselves note) “multiple measures that provide comprehensive sampling of all key sensory domains and drawing on different measurement formats (e.g. parent-report, self-report, observation)”.

It’s interesting to read the suggestion of a link between mitochondria and anxiety, given that I’ve previously found interesting suggestions of links between mitochondria and autism, and mitochondria and chronic fatigue syndrome. (I’m not diagnosed with the latter; for various reasons my doctor and I haven’t yet started to chase down my fatigue issues.)

The search function here finally got unlocked, making my autism blog far more functional. It’s not lost on me, although it’s entirely coincidental, that it happened on the day I had my first telehealth session with the new psychoconsultant—who, not so incidentally, did more to validate the self-awareness and subjective truth of how I think and talk about my brain than did the previous one (a year and a half ago) in the three sessions we had before I quit them. Probably more, even, than did my original psychodiagnostician. Bonus: this new one was very excited to learn about AASPIRE and Autism in Adulthood. Somehow I might be looking forward to the next session? When does that ever happen.

I’d had it all worked out. Last night I got some chores done so they wouldn’t need to be done today, then I took a shower (not a daily thing; I clean myself up every day but full showers take too many resources), so I would be as refreshed as possible for today’s telehealth psychoconsult, set for noon.

The new psychoconsultant emailed just to confirm all my intake paperwork is fine and they don’t need anything else in advance of Friday. I took the opportunity to send back a heads-up that, being my first-ever telehealth appointment and my already-churning anxiety over it, I’ll be standing for the session and did, in fact, do a test-run of where to set up my laptop to make that work. Their response provides some degree of reassurance that my sense of self-care during therapy will be respected.

That paper on autistic burnout in the journal Autism in Adulthood finally got mentioned in Spectrum’s daily newsletter.

The downside of the exertion it takes for me to go across town for a self-care trip to the Oregon Zoo (which now only happens every two or three weeks, not weekly like it did pre-pandemic) is that I always forget that it’s not the next day when I feel it, but the day after that. Today, in other words. I feel like I’m stuck in a gravity swell, and inopportune parts of me ache.

Here come the advance nerves over Friday’s telehealth therapy appointment, which is both my first-ever telehealth appointment and my first appointment with this new therapist.

This thread by Ann Memmott about Controversial Therapies for Autism and Intellectual Disabilities makes me want to buy borrow a copy of the book just so I can throw it across the room.

I’m confused about this study on whether “cognitive inflexibility, alexithymia and intolerance of uncertainty” (in its words) on the part of autistic people “contribute to outbursts and irritability” (in Spectrum’s words)—in that because I can’t access the full text, I don’t understand what otherwise is considered to “contribute to outbursts and irritability”. Other than, for example, sensory processing/sensitivities.

Today in User Friendly, I learned that B.F. Skinner was a failed novelist who basically didn’t have enough empathy to figure out how to write people, and I feel like this explains so much about behaviorism.

There are so many things wrong with the latest Whitney Fishburn newsletter that are beyond the scope of blogging about autism, and while the piece in fact doesn’t have anything to do with autism, it made me think of something I’ve posted before.

Mostly I just want to tell people with summer seasonal affective disorder that I feel you. I don’t think I have summer SAD but a subset of my autistic sensory sensitivities mimic the summer SAD wheelhouse. I haven’t thought about whether summer makes me depressed, but the hot air and the bright sun do rapidly fatigue me. What I need is to find a climate of perpetual autumn.

What I don’t understand about this story—an update to an incident from last year—is why the autistic man in question thinks (in the words of his mother) “he is befriending people” by using the N-word. I wish there were more about this aspect. For instance, were we to take that at face value, has his family never tried to explain to him that he’s not befriending people by using the N-word, but it just didn’t take? Or did they, I don’t know, just laugh it off before this incident? Did no reporters ever try to pursue this question? I assume not.

Sorry, not sorry: I’m obsessing over Eric Fombonne’s nonsense because he’s local to Oregon Health & Science University.

OSHU’s Eric Fombonne demonstrates in his July analysis of the efficacy of Applied Behavior Analysis the bizarre contortions required of behaviorists when it comes to autism. Start with this paragraph.

The truly peculiar thing about Eric Fombonne’s curt dismissal of autistic camouflaging is that as a behaviorist he should recognize that “treatments” like ABA simply teach kids to camouflage. But, then, I suppose as a behaviorist he has a vested interest in not publicly recognizing that fact, else parents inflicting extreme behaviorist” treatments upon their kids come to understand that they might simply be locking up their child in a camouflage cage.

C. M. Condo offers up something of an excruciating look at the costs of masking and camouflaging as an autistic person—demonstrating why I’m so mad at Eric Fombonne of OHSU.

Couldn’t get out of bed until around noon, but then went and sat outside Sparrow Bakery to read a book somewhere other than at home, with latte and cinnamon knot. Pushed myself to get a grocery run done afterward; this was almost a disaster, as it stressed my anxiety levels comparatively high. Then proceeded to hyperfocus myself past lunch time doing, of all things, autism blogging and trying (yet again) to put together an autism Twitter list that I might actually keep up with, somehow.

I’m digging around for a copy of this “Does a Person’s Autism Play a Role in Their Interactions with Police” paper (unsuccessfully), and: how do you do a study like this and only sample “a more representative group across age, gender, functional abilities and context”, leaving out race?

Today’s email from Portland’s own Autism in Adulthood journal calls their paper on autistic burnout a “top-downloaded” item. Clearly that’s because I’ve got remarks in it, right?

Karen Costa explains why educators should not require students to have their cameras on during synchronous distance learning—e.g. Zoom meetings. (I found this an extra click away from a related piece linked by Ryan Boren.)

It’s possible that the reason I don’t feel like I am part of any autistic community is that their apparent colloquial strikes me as more suited for anime characters. Which is fine, but I just can’t.

So, what the hell is this and why is it suddenly popping up on Tumblr? Having drawn down after the year-long experiment of returning to full-blown blogging, I did want to keep my autism posts online; I’ve ported them over to here. I’ll be porting over some other things that didn’t get tagged as autism posts but are relevant to my mental health, and my general health; selfies likely will make their way over, too, since I consider them inherently a sort of “proof of life” self-care thing.

Eric Weiner’s defense of uncertainty reminds me of a number of modern-day Stoic bloggers, in that I don’t recognize the brain about which he is talking.

It’s just going to be stuck in my craw all day. While wearing lifts because one feels too short isn’t analogous to actually-autistic people camouflaging their autisticness, it is somewhat analogous to an actually-autistic person with sensory sensitivities wearing ear defenders. It’s a self-directed and personal accommodation to real or perceived and potentially unbridgeable differences between one’s subjective reality and the nature of the objective (built or social) world around you.

For whatever it’s worth, Eric Fombonne contributed to this paper which glowingly describes the “evidence-based” success of Applied Behavior Analysis, which also is one of two “evidence-based” treatments (the other being Early Intensive Behavioral Intervention) backed by the Association for Science in Autism Treatment, on whose advisory board Fombonne sits.

So, there’s this really frustrating piece on Spectrum, in which Peter Hess interviews one Eric Fombonne, “director of autism research at the Institute on Development and Disability at Oregon Health and Science University” right here in Portland, about a recent editorial Fombonne wrote questioning that camouflaging by autistics is anything special or unique to autism, and questioning whether or not its even “novel in any conceptually substantive way”.

The authors of a new study in Pediatrics say “data reveal a 3-year time lag between parental recognition of developmental delay and autism diagnosis” for Black children, and Pediatrics editorial says its “a call to action for the field of ASD services”. There’s also a writeup at Spectrum.

Peter Godfrey-Smith, in Other Minds, relates one bee biologist’s description of colony collapse.

Lord help me, that aggravating, myopic piece about “millennial burnout” from last year got turned into a book.