Autistic Exhaustion
February 14, 2020 9:40 AM   Subscribe

I'm now a weird mix of wired and tired. Being Autistic comes with a huge helping of fatigue for many. From masking and being social to sensory overload, everything takes more out of you when you're autistic. No one really has a solution, but here are a couple autistic people with tips for things that have helped alleviate some of their exhaustion.

Big h/t to this post for many of the excellent links above: So Apparently Autism Comes With Fatigue?
posted by stoneweaver (19 comments total) 72 users marked this as a favorite
Thank you for reminding me to ask my shrink to call in a refill of my meds.
posted by RandlePatrickMcMurphy at 10:46 AM on February 14 [1 favorite]

This has me wondering if I should look into a possible diagnosis. I identified with so much in that first article, it shocked me. And I'd never heard of stimming before but I've always been an "excessively fidgety" person -- so much so that my arms almost always have bruises from where I've ben unintentionally pinching myself, my thumbs are calloused from pressing my fingernails into them, and my legs never stop bouncing. I tend to think of myself as doing ok in social situations and I think I read people pretty well -- but oh boy, does it ever exhaust me. I've attributed all of this to being an introvert, anxiety disorders, and some kind of ADHD but maybe there's something underlying all of those symptoms. Food for thought and thanks for posting.
posted by treepour at 11:20 AM on February 14 [14 favorites]

Remote work would help immensely in my case and I wager for many people on the spectrum, as it has a friend of mine that is autistic. We need spaces where we can feel safe to zone out and perhaps stim if we need to without the fear of being observed or judged which, by this point, has become so frequent that we've become neurotic and anxious anyway. I think the main issue that exhausts me most is that I cannot switch gears mentally with fluidity and return to focusing, so constantly having to think about being social at the drop of a hat at the office (people stopping by my desks often to chit chat, unscheduled meetings popping up, etc.) causes me to become way more anxious than it probably should because I don't have time to boot up my social scripts (and, god forbid I be "rude" by turning people away and telling them that I am busy or ignoring them completely). That and for some reason people seem to make a point of interrupting me when I am extremely focused which, to me, feels like intentional harassment whereas it might not to others.

Most things are only exhausting for me when people are involved beyond bare minimum interaction, and this is mostly because I can't interact with them in the ways I want to, which is to say, ignore them 90% of the time.
posted by Young Kullervo at 11:24 AM on February 14 [16 favorites]

I have a formal autism diagnosis and this hits home for me. I think of myself as having a very light form of autism because I pass for neurotypical with relative ease but I know I do a lot of masking for sure.

On days where I have to perform lots of small, different tasks (which is most days), meet new people or spend time at large gatherings, I will lose steam sometime late afternoon and a brain fog will settle over me that makes it impossible for me to do anything other than sit on the couch and dick around on my phone or binge something on Netflix. I’ve tried to find ways to reset my brain, like meditate or go for a walk, but nothing works. It takes 8 hours of sleep to get back to normal.

The frustrating thing, for me, is that this has gotten exponentially worse since I became a mom. Having a kid means a thousand more little tasks a day, and it also means keeping track of more information - how much did she drink today, does she have clean clothes, when did I last change her diaper, what is the deadline for registering for preschool, etc etc etc. I used to be able to be productive until after dinner at least, but no more.

Unfortunately this frequently causes friction in my household because my partner has a hard time understanding why I can no longer follow a recipe or clear the counter in the evenings. I guess from the outside it looks like I just don’t care about pulling my weight, which makes me sad because nothing could be further from the truth. I’ll ask him to read this, so thanks for sharing.
posted by piranna at 11:43 AM on February 14 [19 favorites]

Hmm. I have no formal diagnosis, though my spouse and I have discussed it and think I might be at the edge of the spectrum, and things sound familiar here.

I've long labeled myself an introvert by the energy definition: interacting with people drains me, and I need alone time to recharge--but I've just as long noted that that isn't *exactly* it. Interacting with people in precisely-defined relationships does not drain me anywhere near as much--I can teach a class or run a D&D game without getting completely drained and interacting with my wife doesn't drain me at all. Looking through all the articles here...yep, though not as bad for me as for most of these authors.
posted by Four Ds at 12:56 PM on February 14 [10 favorites]

I also have a formal diagnosis (Aspergers). I’m a lawyer employed at a district court in a non common law European country. I’m not a formal judge but sometimes act as one, mostly in small claims, preliminary hearings in commercial disputes and simple criminal cases. Perhaps I would be called a magistrate in other legal systems.

My autistic traits include a lack of instinctual empathy. I have a hard time reading people and understanding nonverbal signals. My coping skills are however very good and I usually manage to analyse the situation enough that I can pick up the things that I don’t get instinctually, though slower than someone who is neurotypical. People tend to read me as very calm and thoughtful these days, after a few decades as an adult.

Still the fatigue is very much there. Just today I chaired two preliminary hearings in civil case; in both I could get the parties to reach an equitable settlement. While my colleagues usually seem kind of elated after having settled a case, I feel totally drained afterwards.
posted by delegeferenda at 1:36 PM on February 14 [3 favorites]

Remote work would help immensely in my case and I wager for many people on the spectrum, as it has a friend of mine that is autistic.

My productivity has gone way, way up since I started working from home two days a week. Some of it is not having to travel, but a lot of it is just... I get to wear comfortable sweat pants. I don't have to dress "nicely". I can eat food without commentary. I can hyperfocus. I can sit in a chair that actually fits my height and legs and in which I can sit cross-legged. I can pause to get up and move. It's nice.

I think the main issue that exhausts me most is that I cannot switch gears mentally with fluidity and return to focusing, so constantly having to think about being social at the drop of a hat at the office (people stopping by my desks often to chit chat, unscheduled meetings popping up, etc.) causes me to become way more anxious than it probably should because I don't have time to boot up my social scripts (and, god forbid I be "rude" by turning people away and telling them that I am busy or ignoring them completely).

Oh my god yes. Yes yes yes, if I am working and in the zone, leave me alone because task switching is the actual worst thing. People want to talk to me when I focusing and I hate it so much.
posted by sciatrix at 2:55 PM on February 14 [8 favorites]

So relatable.

Currently staying at Mom's tiny crowded apartment and it's too cold to go for a long walk.
posted by The Underpants Monster at 5:31 PM on February 14 [1 favorite]


I mean I know I'm on the spectrum and of course I know about the massive, life-altering fatigue, but I hadn't really put the two together? I mean there are other reasons for the fatigue too, like the sleep apnea and the C-PTSD and the extreme anemia, but yeah, it makes sense that the fatigue also just... comes with the neuroatypicality because everyone expects me to act like a 'normal person' all the frickin' time.

When I went to a doctor to wrangle my extreme anemia, she expressed shock that I had driven myself there, as most people with my numbers cannot walk across a room. I was more tired than usual, sure, but not that much more tired, and I don't stop having to do stuff no matter how tired I am, so I just. Keep going, until I don't, and wind up in bed for an unspecified period of time. And that's how it's always been.

Would it be different if it didn't take me so much effort to interact with people and suppress my natural set of behaviors? What would that even look like? Suppression is such an instinct by this point that I have no idea what that would look like. But it's possible that I would continue to be so worried about the responses from everyone else around me that it wouldn't be any less tiring. Because, even if one is alone in public, people won't just fuck off and ignore you if you're doing something weird. Not if you present as female, anyway.

The thing where everyone expects multi-tasking to be manageable is real and tortuous, too. I do not understand how to multi-task. The best I can do is to try to switch back and forth between tasks more quickly than I usually would, and the result is sub-optimal. Need to get some kind of handle on this one, because we want to have a second child, and having multiple children involves a certain amount of unavoidable multi-tasking, and I just don't know how I am going to manage to split focus between multiple children, even though I want to.

In conclusion, being autistic has some innate difficulties and also the general public make everything about it way, way harder and I wish they would stop.
posted by Rush-That-Speaks at 5:52 PM on February 14 [7 favorites]

I... yeah. I mean, I knew this about myself, but never concretely, I guess? I know that if I have to be out of the house for more than a few hours (sometimes, even only a few hours) I'm not getting anything done when I get back. I aggressively forced my schedule to have Fridays off, even though that means working until 8pm some nights. It's the only way I get anything done outside of school/work. I just can't, after all the sensory and social and task switching and and and... fuck.

I'm so tired. I'm so tired.
posted by brook horse at 9:03 PM on February 14 [9 favorites]

Oh my god yes. Yes yes yes, if I am working and in the zone, leave me alone because task switching is the actual worst thing. People want to talk to me when I focusing and I hate it so much.

It's physically as jarring as being punched in the face, right?

I thought working in tech would mean less social interaction and more people who can empathize with my need to just focus intensely on whatever I am working on but somehow that doesn't seem to the case at all no matter where I go. People's desire to make chit chat and be my friend and managers that shift project priorities randomly or whatever else while we're working on applications and systems that are CRUCIAL to operations baffles the hell out of me, and I wager this is also the reason my grandfather and uncle, both engineers in their time, went absolutely bonkers, quit their jobs, and decided to work for themselves rather than deal with people in their industries. I've been there myself twice in my life thus far, like, maybe I can go live in the woods and never have to listen to another person talk about their divorce or their weekend forever. I don't think less of them for their lives, I just...for some reason my brain doesn't want to hear it and nothing makes me more uncomfortable than having to pretend I'm interested.

So far having a diagnosis has made me realize that I am not a garbage human being that everyone hates for no reason just because I am deplorable by default but that neurotypical people just can't comprehend why I am asocial (except perhaps with a limited few people, usually others on the spectrum, and even then sometimes that is not a guarantee) and are simply reacting to it as they've evolved to: with disgust. But I also still haven't been able to leverage my diagnosis to ask for accommodations.

I often hate my autism in this regard, because it feels like I am constantly being unfairly pushed out of the modern working world despite being extremely reliable and competent. I get that neurotypical people cope with the drudgery of technical work by attempting to make it more socially comfortable, enjoy the presence of others, touch, etc. maybe because they can't stand to NOT be based on their biological wiring IDK, but I have found it hard to explain that I should be treated like a robot and left alone without people taking it as a slight.

So yeah most work days just feel like one big wasted, exhausting mess that I am retreating from.
posted by Young Kullervo at 7:38 AM on February 15 [13 favorites]

Passing is exhausting. Passing that involves navigating environments that are innately hostile because they were built for differently-operating nervous systems is massive, impossible to explain types of exhausting.

Working remotely is life-saving.

Young Kullervo, I totally get it. I have found that working as a developer can be better than working as a sysadmin? Developers are usually expected to spend lots of time working alone, but sysadmins seem to get mentally filed in the same category as administrative staff or repair people and are therefore OK to interrupt.

I also mentally consign all lunch hours and meetings to 'working with people' instead 'actually working', and therefore measure productivity during those times in things like 'looking at people's faces', 'following what's being said', 'not agreeing to ridiculous requests' and 'taking accurate notes'. It's much less stressful than expecting time spent with other people to produce actual work product.

Small organizations can be more understanding of individual quirks, but they can also change much more abruptly and be wildly quirky themselves. I landed in one that really wanted me for non-work reasons. It's been rough at times, but they're willing to work through the rough spots because otherwise they'd have to hire someone else and it's hard to find someone who fits. YMMV, though.
posted by Ahniya at 11:53 AM on February 15 [6 favorites]

I don't have any real contribution to this thread because I feel like I'm going through exactly what it describes, and even though I'm totally alone this weekend and that should result in some kind of improved processing ability, I'm just so tired and my head isn't working, and everything is just scattered and confusing, but still, I wanted to say how glad I am the post is here and how glad I am to hear people responding to say that this is accurate.
posted by mittens at 8:00 AM on February 16 [7 favorites]

One thing that's helped me is to realize that merely seeing things is exhausting, so investing in blackout curtains is well worth it. Even in the midday sun I can draw the curtains and it's dark inside my room/apartment. The reduced sensory input really helps recenter me, or what I call dewhelming, or giving me back spoons. (spoon theory really helps frame my energy levels) When I was a kid I'd close my eyes while walking for as long as I could, before fear of hitting something/someone set in and I had to open my eyes. As juvenile as it sounds, even just hiding under a heavy blanket helps.
posted by fragmede at 3:21 PM on February 16 [3 favorites]

I know the studies are inconclusive but ever since I’ve been sleeping under a weighted blanket this has gotten much better for me. Not gone away- but just better.
posted by Homo neanderthalensis at 7:02 PM on February 16 [2 favorites]

Ooh talking about inconclusive studies, that reminds me. So yesterday I was doing research for a biopsychology class project and rediscovered that beta-blockers are sometimes prescribed for autism. I have been thinking lately about how my sensory tolerance is... still pretty terrible, but I can get through longer than I used to--a few hours at a convention doesn't leave me sobbing, though I'm exhausted afterwards. I've... been on beta-blockers for tachycardia for a few years now. I never made that connection. Could be coincidence. But also could be something? It fits with the hyperarousal theory, at least.
posted by brook horse at 8:09 PM on February 16 [1 favorite]

I used to take a beta blocker for performance anxiety maybe it was helping me in more ways than one.
posted by The Underpants Monster at 9:04 PM on February 16 [1 favorite]

I think beta-blockers have helped me with some of this! I take a very very tiny tiny dose because otherwise it turns around and makes me tired all by itself. I've also realized that often my exhaustion is actually my brain signaling that I'm in pain, and ibuprofen or naproxen helps. I also have black out curtains because sometimes I just need to not see things. I walk around without my glasses on and without my hearing aids in a lot to reduce the sensory load. Not great for when there are other people around, but I just need peace and quiet to recover and ground.
posted by stoneweaver at 9:20 AM on February 17

i have long hair. if i need a fidget toy, i can braid/unbraid it. if i need a safe space, i can unbraid it and pull it forward to cover my face. it's dark, it's warm, it smells good, i can hear it rustling over my ears as i shift my head and i can stroke the ends lying in my lap... and when i'm starting to be ready to face the world again, i have the task of rebraiding it to focus on, which has a defined end.
posted by Clowder of bats at 12:50 PM on February 17 [2 favorites]

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