Tag: autism

CW: Brief mention of suicidal ideation, job-related stress, aging

About a week ago I wrote about recognizing that I’m burned out*, autism-style. Emotionally drained, physically weak, unable to manage simple things like task initiation or even activities of daily life like showering or eating, without significant risk of being overwhelmed, emotionally dysregulated (meltdowns galore!), or prevented from doing whatever the next thing is. I was a ball of snot and fear and sharp sharp knives and I felt like I was drowning in a sea of vindictive and untrustworthy spiders.

*Burnt out? I dunno – I’m sure there must be a rule about which one is correct. I just don’t know what it is. I tend to use burnt out and burned out interchangeably.

I don’t know what neurotypical burnout is like – I’ve never been neurotypical. But I can tell you that my experience of autistic burnout is on par with the most severe cases of burnout or chronic mental illness that I’ve seen among my neurotypical friends. Not just tired; exhausted. Not just discouraged; distraught. Beyond cynical, I lose hope and can’t stop crying. Not just unable to get out of bed; unable to move my eyes.

One major feature for me as an autistic: the tools I’ve learned from the rest of the world for recovering from burnout are either difficult to access, difficult to use consistently, or just plain ineffective for my neurodivergent brain. I’m required to remember how to take care of myself while I’m emotionally dysregulated, which is a non-starter even on a good day. My autism means that I can get so profoundly burned out and dysregulated that I get emotional tunnel vision. I just can’t see the remedies that are there around me begging to be chosen… even if I know they will help.

Additionally, I’ve learned burnout can happen quite a lot in an autistic person’s life with cumulative ill effects. For me, certainly, I can count five major times in my thirty year career when I’ve been so burned out that I needed a completely new job and months away from work to recover. There are loads of other times when I got burned out badly enough that, although I didn’t have to leave work, my work performance or relationships suffered and I had to do a catastrophic amount of reputation repair and damage control.

As I get older, burnout happens more quickly for me, with less warning, and it is harder and harder to recover from. It’s like the feeling is cumulative: every episode of burnout brings with it the burden of past burnouts. Given that my tools for actively recovering are pretty limited by a lifetime of poor training and poor examples (my autism is only recently diagnosed and as yet poorly explored) and I’m burning out faster and more profoundly than I used to when I was younger, burnout is becoming a significant threat to my life and lifestyle. Again. Still.

In other words, the older I get, the less I can afford to get burned out at all.

When I realized a couple of weeks ago that I was profoundly burned out – enough to take leave from work if I’d had the option – I knew I had to make my recovery count, quickly.

If I didn’t I risked:

• Blowing the newly-boosted but still-limping confidence I’ve accumulated since recognizing that I’m neurodivergent and not just a weirdo who fails a lot
• Failing (or even just breaking down) at work during a very high traffic, high pressure time
• Losing my performance bonus (I count on that money – it’s not “extra”, it’s a sizeable chunk of my compensation)
• Losing my job and having to find a new one right away
• Losing my health insurance at 56 with a growing stack of major healthcare needs for myself and my partner
• Losing many of the things that form a barrier between me and suicide
• Worrying my already chronically worried cats

As an acquaintance in the online autism community said about their own currently-emerging burnout, “…[M]y life as I know it will end. Not suicidally or anything, just, I can’t rebuild from scratch again.” Yeah. Me, too. The stakes are high, our margins are thin, and taking a break to recover from burnout can be very, very disruptive to the stability many of us on the autism spectrum crave. Not to mention expensive as fuck, and I haven’t recovered financially yet from the last time I burned out 3 years ago.

So. I’m burned out but not free to drop everything for repeated screenings of Heartstopper and the Harry Potter movies. I need to stay mostly sober and responsible, maintain a decent attendance record at work, and keep doing the health work I’m already doing* so doctors don’t yell at me.

* I have Type 2 diabetes and scoliosis, and I’m finally making real progress in keeping those two conditions out of crisis-mode. (My a1c is almost normal!) Losing ground on my health would be expensive and painful and also really fucking humiliating for me.

So. How do I recover from my current state – leaning out over the edge of a potentially bottomless burnout chasm and highly likely to fall in?

It’s clear, now that I know I’m neurodivergent, that for me the best remedy for burnout is to drop as many balls as I can and do as much nothing as I can possibly manage.

Nothing is my friend. Things are my enemies.

Every social event, conversation, decision, outing, phone call, meeting, project, clothing change, document read or written, or even walk around the block deepens that burned out feeling and weakens my ability to recover.

So what am I trying instead of taking time off work? And how is it working? I want to take some time to write down some of this, both for others who may be going through the same thing (YMMV of course) and also for myself, to keep a record of what seems to be working so far.

What am I trying?

Here’s a quick list of what’s been working for me over the last two weeks.

Turn Down Every Invitation

I’ve declined* all social invitations for the next several weeks (possibly months), even with the partner who shares my house, in favor of hanging about in my shorts with my hair uncombed, only vaguely paying attention to anything. (Yes, I’m bored. No, that isn’t a terrible problem to have.)

*Because sometimes I won’t say no if I don’t have a “good” excuse, I’ve pre-written one that I’m using everywhere I can: “I’m so glad you invited me. I miss you! I have to say no because I’m giving myself permission to prioritize quiet alone time this summer. Please keep asking, though, because I am excited to say yes when I’m in a social space again.” It’s not perfect but it’s a good starter that I can customize to the person/occasion.

Pay Attention to As Little As Possible

Since I lead a team at work and have to pay attention to their needs most of the time, I’ve cut way back on things I’m attending to outside of work. I am reading headlines, not articles (my partner will summarize anything I need). I avoid clicking in on social media trending topics. I’m watching things I’ve seen before many times. (Thank you Christopher Nolan for Interstellar and Alice Oseman for Heartstopper.) I’m letting some political stories and Twitter dramas proceed without my knowledge or input. This is a big change for me, as my general nature is to get up in the business of everything around me; it’s a part of my self-concept that I am aware, observant, and informed at all times about as many things as possible. Right now, I’m just not going to be that person and I’m going to let that be OK.

Stop Trying to Optimize Everything

This started before I was burned out, months ago, because I realized I was irritating my partner with increasingly detailed instructions on not only what to do but how to do it. Looking back I recognize that I tend to want to control things so that there are no surprises, no rework, and everything is smooth for everyone, believing it’s my role to prevent things from going wrong everywhere. So if I have learned the “best” method for grilling a zucchini or breading a chicken wing I’ll include that in my instructions. I end up writing and reciting a LOT of instructions – even for someone who does instructional design for a living.

While it’s admirable (if unsustainable) to try to optimize outcomes, when I’m burning out I lose my sense of proportion about that need for control. I want to control everything or nothing. And since trying to control my partner, an actual human who makes his own decisions with his own grownup brain, was stressful for both of us, I temporarily gave myself permission to give that up. If something is so important that it a) MUST BE DONE, and b) MUST BE DONE RIGHT, I do it myself. If I can let it be “good enough”, I let someone else do it. If I can’t tolerate having it done poorly and I can’t do it myself, I skip it. Period.

Perfection can wait.

Decline Decision-Making

My partner and I tend to make decisions about food, entertainment, money, etc., together. At work I have a reputation for wanting to weigh in on decisions that affect me and my team. But for the duration of burnout recovery, I’m walking away from any decision I can delegate. I’m saying “I’ll back your play if you make the call,” far more than I ever have before and I’m finding it’s not uncomfortable. I trust my teammates and partners, and if that trust fails I’m learning again to trust my own ability to adjust to imperfection.

So wherever I can I let them lead. Where I can’t delegate, I choose the simplest option. Not the option optimized to please the most people (my usual mode) but whatever option can be done in a click, handled with an email, brought in from the porch, or consumed with my hands in front of an open fridge.

(As I was writing this my partner, who is arranging a few things before he goes out with friends, came in with a tray of supper and asked me where I wanted it. That moment became an opportunity for me to decline the decision, and for him to make a once-and-forever decision about supper trays: they go on the coffee table next to the couch where Jane works. Done. QED. No more supper tray decisions, probably forever. Enormous relief! Plus yummy cheese and fruit and tuna salad for me to graze on while I watch… well, you’ll see in the next section what I’m watching.)

Samefoods, Sameclothes, and Samecontent

Even before I was autistic, I’ve always had the stereotypically autistic tendency to settle on one way of doing things and do it consistently.

Like “samefoods”, for instance. Though I have a wiiiiiide variety of things I enjoy eating, I really like always having a fried egg and sausage for breakfast, or the same latte order, or the same “cheese and cherries” snack tray next to me all day. I like knowing I’ll have a consistently acceptable experience of these things without much emotional or physical effort.

For burnout recovery I’ve extended that idea to just about everything I can think of: clothing (I’m writing this in the same sports-bra-and-boxer-briefs outfit I exercise and sleep in, and I only throw on a grownup shirt for virtual meetings, pants/shoes only for leaving the house), hairstyles (messy topknot all day and all night), television and books (re–watching and re-reading is soooo soothing), document templates and tasks at work, and anything else I can think to same-ize.

I’m finding that if I don’t put any effort into or add any risk related to these small same-things, I have more margin for dealing with other, bigger things and I can keep myself clear and emotionally organized.

(And at least one restaurant is getting used to making the same sandwich order for me 3 times a week; I’m thrilled to give the tuna melt from Vessel in Seattle my repeated patronage.)

When I’m recovered I’ll go back to adventure foods and new storylines and compelling news and documentaries and daring outfits. I’m still that same curious and driven brain. I just need to rest all of that for a while, and that’s OK. In fact, it feels pretty good.

Set a Very Low Bar

I’m ambitious, as a rule. I will choose overachieving in every situation when I’m allowed, even when I know that it’s destructive for me in the longterm.

But not right now. On purpose, I’m setting the bar for every hour, every day, super super low. Did I sleep at least a small amount in 24 hours? Win. Have I taken my meds? Win. Am I marginally hydrated? Win. Do I smell mostly OK? Win. Have I had a little bit of pleasure or quiet? Have I successfully navigated not hurting myself today? WIN.

That’s it – that’s about as much as I want to promise for any given moment, hour, or day.

When a day ends, am I at yes for basic human functions? Then that’s the whole ballgame. Because when I’m in burnout, basic human functions are hard enough. Period. End of story.

Soothe My Senses First

(Honestly, this one seemed small to me at first, but it’s not. Really really not small.)

Now that I know I’m autistic, I feel freer to acknowledge that there are some sensations that set my teeth on edge; I have sensory sensitivities*, not just shit I’m picky or snobby about. In burnout recovery, I’m finally acknowledging that my sensory needs are foundational to my ability to cope.

*At least one beloved partner would like to have known this earlier, having suffered my shocking and immediate response when, during an intimate encounter, he tried to put his fingers in my mouth.

Way more than I’ve let myself admit in the past, my failure to attend to sensory things has led to meltdowns even when sensory things are not the things I think I’m melting down about. Sure, I’m mad because someone parked in front of my driveway or won’t answer my simple question, but I melt down because that happens on top of hours of ignoring an annoying noise or hip pain or an itch, or because I’ve been a little too hot or cold for a while, or I put off peeing, or (like right now) I have the hiccups and they’re not going away*.

*No, I don’t know why I get the hiccups at least twice a week, and I don’t know how to reliably stop them… though sometimes a particularly perverse way of breathing deeply can interrupt the diaphragm spasm and give me relief.

So right now I’m giving myself permission to aggressively file the edges off my environment. I have the quiet fan running in my office. My partner and his noisy podcasts have been gently nudged towards his upstairs office. My office window is cracked for fresh air all the time. The air conditioning is made to work harder at night so I can sleep without hot flashes. (We’ll find a way to adjust to the added cost later. This is temporary.) My clothing is soft soft soft. The blankets on my sofa and my bed are the super plush deep red ones that please my skin and my eyes (and therefore my brain) more than their grey or brown cousins. I do not answer the phone.

And I stim every time I get the urge.

Treat Every Near-Meltdown as if it’s a Meltdown

True to the autistic stereotype, I melt down when I’m overwhelmed – with tasks, emotions, or sensory input. And also true to the stereotype, I’m quite bad at recognizing I’m melting down until it’s too late. Typically about halfway through forming the thought I need to stop or I’m going to melt down, I melt down.

It’s fast.

The speed of meltdown events is the biggest factor in my inability to prevent them. If I’m about to melt down, it’s almost always already too late to stop it.

And to be absolutely clear, stopping meltdowns when I can is critical to recovering from burnout for me. That’s because every meltdown takes me backwards, removing progress I’ve made and forcing me to start from way farther back along the path than I was.

Since I am bad at recognizing meltdowns as meltdowns when they’re about to happen, I’ve turned to identifying potential very early precursors and blasting them with self-care. I’m learning to recognize when I have the urge to be sarcastic, for instance, or when I start to fantasize about saying no to something. Or the urge to cry. Or thinking I need a break after this.

I’ve learned that these are the signals I have to take seriously or do real damage to myself.

I wouldn’t have taken them seriously in the past, even in the recent past. Most of my life I’ve thought of myself as neurotypical, beholden to neurotypical standards. Neurotypical people can get a little pissed off or impatient or itchy and it isn’t a catastrophe. I thought I should be able to do the same… which has led to me consistently underestimating how far I am down the path to a giant cataclysm of emotion and will.

I’m trying not to make that mistake anymore. I’m autistic. I’m alexithymic. An early warning system is critical to my survival in an autism-unfriendly world.

So now I give myself permission to treat even tiny, laughable warning signs as if I were actually melting down. I don’t mean that I scream and throw a shoe at the closet door (my partner’s customary first sign that I’m melting down). I mean that I treat it like I can see a tornado in the sky and I have five minutes or less to get somewhere safe… even if it’s just a funny-shaped cloud.

At the first sign of impatience, irritation, anger, or tears, I clear the room as quickly as possible and I stim. Depending on the situation, that might mean faking a small urgent matter to bug out of a meeting, going to the bathroom to be alone, giving my partner the code word (“goodnight”) that means I need him to gently clear out… whatever buys me a little space and time. Then I grab the nearest, most acceptable stim I can get: anything from a small soft piece of red chenille fabric I keep in my bag if I’m amongst people to a full bodied session of chaotically slamming my body back and forth to my stim playlist if I am alone.

Because I have discovered stimming and it is magic for me.

If it’s not really a nascent meltdown, I know pretty close to immediately: stimming is satisfying and happymaking but not physically necessary.

If I’m averting a real meltdown, stim activity focuses me and centers me in my body, and it gives me just enough relief and room in my head to think. And feel. And release.

Since I’ve been treating near-meltdowns as meltdowns (about two weeks), my meltdown frequency has drastically reduced. I went from a meltdown at least every other day that could last as long as 24 hours to something like one full meltdown a week that I can release and move forward from after only an hour or two.

That’s MASSIVE, and it’s helping me gain confidence that I am not always going to be a slave to my tendency to react poorly to overwhelm. I’m starting to feel in my bones that there is a whole universe of autistic-friendly cope that I can master and use to feel better, consistently and reliably.

I’m beginning to realize that I could possibly, maybe, in the far future, feel okay.

Some Results!

All of that – that whole list of things above that I’m doing to help myself recover from burnout – has one central thread: the more nothing I can fill my days with, the faster I will feel better.

And it’s showing results.

It’s been almost 2 weeks since I came back to work from vacation fully burned out, weeping and melting down near-daily, absolutely terrified that my biggest project of the year is starting now and I really can’t fail at it. In that two weeks I expected to just barely be able to do the minimum at work and in my relationships, hoping that no one notices I’m failing or deferring tasks until I feel better.

But in that two weeks I’ve clocked only two absolutely awful days (where I did end the day in tears without the ability to use language) and three or four days when I was practically happy – confident about my work, adequately connected with my partners and the world, and able to sleep well without drugs or nightmares.

I’m not okay, but given how awful I felt every minute the week before I realized I was burned out, just the simple progression of marginally good days is a bounty beyond my ability to fathom.

There’s a chewy metaphor for burnout that uses a tabletop roleplaying game mechanic, but it’s 7pm and time for me to stim for a bit and let go of the day. I’ll save that metaphor for another post.

Wish me luck for the next however-long, as I craft a real and sustainable burnout recovery.

What do you do to prevent or recover from burnout? Is it working? That’s what the comments section below is for. Go nuts – I want to hear about you!