Yesterday I wrote about what’s working for me as I recover from a case of autistic burnout.
Today offered an opportunity to reflect on what’s not working.
A quick list of things that still trip me up:
Setting boundaries with neurotypical people
Boundaries where it’s not safe to say I’m autistic (work, doctors)
Back to back meetings
Switching from many small fast tasks to one big focused task
Weighing my needs against the needs of the team I manage (I fear I’ll struggle with this forever)
When work makes it hard to pay attention to my body’s signals (like having to pee or being hungry or cold)
Disturbed sleep
Being able to avert a meltdown early in work situations, sometimes. (That failed today. I tried to bug out of a situation but the person I was working with failed to recognize my urgency.)
The good news here is that I’m getting more confident about being able to reduce the number of meltdown triggers I have. I just have to give myself permission to tackle them one at a time.
And I need to more consistently remind myself that failing in any given moment isn’t a failure everywhere all the time.
So yeah I melted down today. Only one person saw it happen and I trust her to be kind.
Now I’m stimming and trying to cool off my brain so I can try again.
I’ll be okay. Every meltdown erodes progress, sure, but there are also opportunities to analyze and learn and prevent the next one.
Meltdowns are not brushfires. They don’t destroy anything permanently. Not are they kilns that harden and strengthen. They are crucibles. They burn away shit I don’t need, leaving behind the truth about where to focus next on my path to feeling better (and mixing metaphors).
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.
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!
I was writing the last post and saw my current Twitter name (Agitated Spiders for Human Rights), which reminded me that I wrote a song once about my autism. I didn’t know it at the time, but it was absolutely about the surprising and often confounding ways I show up in relationships with my social quirks and finicky approach to tenderness and wild emotional rollercoaster.
So I’m posting it here. It’s called Spiders.
(Pretend I said something charming about how bad my production values are. It is what it is. It’s a cheap ukulele and amateur Garage Band stylings. Enjoy only if your own sensory sensitivities don’t ring you like a bell when you hear it.)
I wrote it in the early months of a tumultuous relationship that ultimately ended badly – mostly because neither of us had any clue about our individual neurodivergence, so we just kept failing at the neurotypical things we thought we were supposed to do, like planning dates and managing logistics and communicating about our feelings. He was a good guy, still is. We just hurt each other a lot.
I find it applies to my current relationships as well, and everything in my past – friends and partners and lovers as well as coworkers and doctors and fucking everyone else.
The central metaphor – “I’m a bag of agitated spiders” – comes from a conversation with a friend I miss with a deep and painful longing. The friendship was a casualty of my undiagnosed-autism-trauma. One day I just couldn’t talk to her. I may never be able to explain it to her in a way that makes sense, but I’m hoping for the strength to try some day.
Yeah, so that’s one of my old songs. I’m writing more now, and I have a song I hope to finish this calendar year about what being in love is like with ADHD, about the endless now of hyperfocused desire. Wish me luck on that one – finding the right words has been difficult but it’s getting easier.
Have you made music about neurodivergence? Made art? Built a thing? Links in the comments, please!
/autistout
SPIDERS
This is not what I expected, your warm eyes taking in what looks like beauty to you, still, your hand cups my chin like a bird, like a simple little word you whisper softly, like it doesn’t hurt at all
But don’t you see the storm? But don’t you see the storm?
I’m a raging nightmare of a person A gallery of curtains hiding unforgiving knives I’m a churning ocean full of wreckage I know I can’t protect you from my cyclone of my life
I am not what you expected, Someone sweet taking time to learn the language of your body Someone easy, somene cool to the touch, like the back side of the pillow On your wrist, like a glass of lemonade
Can’t you feel the fire? Can’t you feel the fire?
You’re a man of consequence and honor, You pride yourself on kindness but I think that you’re naive. I’m a bag of agitated spiders. I’m kerosene and lighters and signs that you should leave.
I don’t know what to do with patience. When you lie there tracing fingers on the landscape of my fear Waiting quietly until I catch my breath, kissing soft behind my ears Until my skin reveals a roll of old barbed wire
Unfolding in your arms Unfolding in your arms
I’m a raging nightmare of a person A gallery of curtains hiding murderers and thieves I’m a bag of agitated spiders. I’m kerosene and lighters and I think that you should leave.
If you’re following me on Twitter, you’ve probably seen me post about stimming.
The late-diagnosed autistic experience of figuring out I had stims that I didn't know were stims, and learning to let them OUT so they can BREATHE…
Yeah, that's a thing I'm feeling a lot right now.
(She says, while rocking impressively side to side.)
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) July 27, 2022
This is how you can tell I’m a baby autistic: I’m 56 years old and I just discovered stimming. Like, stimming as a source of pleasure, as an emotional regulation tool, as a place to put the overwhelming weirdness of me that flows from me in gouts.
I’m learning that I don’t have to suppress my physical weirdness. I can use it, feel it, enjoy it, live in it, savor it, nurture it, and let it fly. (And I can choose to let it be visible or not, depending on who I’m with and how much ambient weirdness tolerance there is in a room.)
I have, and will have, loads and loads of ideas about stimming as I explore it, but to start I just need to let it happen.
Primarily right now, stimming wants to happen when I’m alone at home. And it wants to happen to music.
I’ve consulted with my bones and they tell me they want deep bass, twangy guitar strums, deep or passionate voices, and lots and lots of drums. Is it a handjive or a Prima-style bass-drum drive? Even better. If a drummer or a bassist is working up a sweat somewhere, I want to stim to it.
What kind of stimming? Big, deep, full torso rocking. Back and forth or diagonal if I’m distressed. Side to side or up and down if I’m happy. Shoulders/arms optional. If I’m super happy and the music is the B-52s, it’s the Peanuts dance. (Huh – maybe I should add Linus and Lucy to my stimming routine?)
I’ve learned that if I’m melting down, or about to melt down, this kind of stimming (rocking and bouncing) makes a huge difference in how quickly I recover and how much damage I do. Heavy stimming can break my focus on the distress and it definitely acts as a valve to release the pressure of intense emotion. I get so into it I forget to be angry.
If I think to turn on music, the effectiveness of stimming as distress-reduction gets even better.
And if I stim/rock/bounce when I’m happy… man that’s just fucking delicious.
Because I know that distress makes my memory fail (which is why I can’t think of distress-reduction techniques when I’m upset) and my tolerance for complex steps evaporates, I made myself a stimming playlist. With a playlist I can pull it up from my phone, laptop, or TV with just a few steps.
(If you’re an Amazon Music customer I’m told you will be able to see and play this playlist*. My apologies if that doesn’t work. I’ve included the songs below.)
There’s some refining to do. I had a shit morning today and I used the playlist to great effect, but I skipped a few songs (not sure if Ballroom Blitz will have the longevity I thought it would). I also found that I needed to start big (heavy drums and base, driving beat) and end small (slower beats, more emotional resonance, more personal), so I rearranged the songs into the current configuration (below) to get something like a workout arc that grabs my energy and helps it settle after a while.
So yeah, that’s a thing. A stimming playlist. I’m especially happy that I thought of this because these kinds of repeatable, accessible-anywhere, modular tools are what I need so that the natural chaos of my ADHD doesn’t defeat my efforts to care for my more sensitive and brittle autism.
Do you have stims you use? Do you use music or other media to enhance/inspire stims? Or emotional regulation? Do you use a playlist for this? Am I even using the terms right? I dunno. I am just starting to figure all this out.
/autistout
Jane’s Stim Playlist (Wind Me Up)
Song
Artist
notes
Wind You Up
Jarles Bernhoft
Norwegian R&B – honest to god technomage
I Like to Move It
Los Colorados
Ukranian – accordion, marching bass drum, and other embarrassing instrumentation
Danny’s All-Star Joint
Rickie Lee Jones
Rats & Raccoons
Jarles Bernhoft
Calamity Song
The Decemberists
WHAT APOCALYPSE NERD DOESN’T LOVE THIS SONG?
16 Shells from a 30.6
Tom Waits
I cannot have a playlist without Tom Waits in it. It is ordained.
Peaches (1996 Remaster)
The Stranglers
That bass line is pure sex.
Sing Hello
Jarles Bernhoft
This Year
The Mountain Goats
Since 2020, this is America’s theme song.
Lift Me Up ‘Till the Morning Comes
Bernhoft
Oh My God Yeah Fuck It
Mike Doughty [feat Moon Hooch and Miss Eaves]
Mike knows.
Are You Gonna Be My Girl
Jet
Come On Eileen
Dexys Midnight Runners
Cmon Talk
Jarles Bernhoft
Arrow Through Me
Paul McCartney and Wings
The Lovecats
The Cure
The perfectly crafted pop song.
Us
Regina Spektor
We Have a Dream
Bernhoft
O Children
Nick Cave and the Bad Seeds
She’s a Genius
Jet
I’m not.
She’s Thunderstorms
Arctic Monkeys
I am.
I Wanna Be Sedated (2002 Remaster)
Ramones
Valerie (Version Revisited)
Mark Ronson [feat Amy Winehouse]
Funk #48
The James Gang
Joe Walsh is an oldschool guitar mage.
Ballroom Blitz
The Sweet
Pardon Me
The Blow
If you don’t know The Blow, change that now.
Swing Baby!
Big Rude Jake
My best friend and I used this as the theme song for our stage and cable access shows. Jake was a Toronto punk-influenced jazz dude who sold us the rights for $1 American. He died this year of cancer. RIP, my friend.
Powa
Tune-Yards
This song lives in my root chakra, if root chakras exist. (Yeah, they really don’t. But it feels like they do. You know?)
Private Idaho
The B-52s
Cold Steel Hammer
Big Rude Jake
Sister Needs a Settle
Say Hi
This song marks a transition from (mostly) more driving beats to softer, more emotional, more focused songs. This is my cool-down, if I need it.
Torn
Natalie Imbruglia
Singing harmony with Natalie is a stim.
Seven Day Mile
The Frames
This song’s lyrics kind of don’t make sense and also kind of exactly make sense. It’s an encouragement to keep going. It taps a vein for me.
Riot Van
Arctic Monkeys
OLD PUNK BOYFRIEND MEMORIES. And that descending chord progression in the chorus is so smart and sly.
Far from any Road
The Handsome Family
Have you seen the first season of True Detective?
Sofisticated
Stereo MC’s
Cool in a bottle.
Somebody That I Used to Know
Elliott Smith
I like songs that play with measure or phrase lengths, and this one does it masterfully. Good strum, too. I feel it in my chest.
Sometimes
Walk Off the Earth
The acoustic mix on this cover, combined with ethereal and fluffy guitar strumming
Fragile
Paperboys
Best cover of this song, even better than Sting’s original.
Jane
Ben Folds Five
A SONG ABOUT ME BEING ME. This one will get featured in a blog post soon I’m sure.
Go Into the Night
Gabrielle Papillon
More play with measure and phrase lengths.
Paper Mache World
Matilda Mann
If you’ve watched Heartstopper, you recognize this one.
Why Am I Like This?
Orla Garland
Same as above. Also… I swear to god it’s about neurodivergence.
If the World Should End in Fire
The Handsome Family
It’s weirdly reassuring.
*I’m not a fan of Amazon Music – or of Amazon – but it isn’t Spotify so it has that going for it. I used to work for Amazon, so most of my stuff is just up there in Amazon’s cloud and it will take me more executive function than I currently have to collect and migrate everything… which is how companies like this make their money. It is what it is.
It would be easy to tell you, from within my current existential crisis, that every day of my life has been a trash fire. But that would be a lie.
It’s true that there are a lot of painful memories and a lot of bad outcomes that I didn’t know how to avoid. I’ve lost a lot of friends. I’ve lost a lot of money. I’ve walked away from a lot of really good jobs. My credit score is so small if you turn it sideways it disappears. I’ve had a lot of failures.
And it’s true that in spite of spending every day of my life in my own presence, experiencing my own brain daily, I haven’t really understood who I was or how I work, which is a very painful realization. Most of my life I had no idea that I wasn’t dealing with the standard brain kit. I thought I was pretty much like everyone else, just… more chaotic. Maybe, maybe, more special. Normal, but with fairy dust… and a lot of failure.
I thought I was failing at normal, and that some day I’d get it right. I thought that the way I struggled was temporary when in fact my struggles were built into my anatomy, into my structurally atypical brain. It’s a big deal to have figured that out, and in the scale of geological time, if you zoom all the way out, because I know things now about how my brain works, I’m going to be okay. I’m going to figure myself out.
But I used to be, without any effort, a thing that I may never be again: cool.
Like… for enough moments that it felt like it could be my normal state, I was brave, bold, funny, warm, ambitious, curious, surprising, caring, and scary smart. I was the person who said the insightful thing. The really funny thing. The beautiful thing. The thing everyone needed to hear. I went on delightful, unexpected adventures. I was a leader. I had friends.
I felt welcome.
I was somebody.
I was cool.
In and around my trash fire of financial and career and relationship failures, I had an accomplished life. I was a successful and valuable employee, a standup comic, a songwriter, a visual artist, a writer, a carpenter. I did solo canoe trips. I led protests. I swam in big rivers. I loved and was loved by impressive people, great humans who Accomplished Interesting Things. I influenced. I challenged. I played. I took risks. I made a lot of money for a small town kid from a fucked up family. I could be vulnerable in public with grace. I helped other people feel comfortable and safe. And I told really good stories.
I have been, in spite of struggling nearly every day for 56 years, a pretty interesting person. Someone people liked knowing.
I had, in spite of my failures, confidence and charisma. I was someone I liked.
Lately I’ve struggled to like myself.
For a couple of years – and if I’m honest it’s probably been longer than that, off and on – I haven’t been warm or funny or caring or adventurous or even smart. I have been angry, afraid, reclusive, brittle, confrontational, jagged, jangly, lonely, and very, very sad.
Of course, the last three years have been a trash fire for more than just me. A global pandemic, a national crisis of identity, an attempted coup in my formerly stable country, a human rights collapse, and the elevation of an American political culture of feckless, ignorant bullies… all these things have been happening to just about everyone. In what we’ve unimaginatively learned to call “these unprecedented times”, most people – at least most Americans, about whom I can speak with some authority because I am one – have struggled.
But what I’ve been through in the last three years was going to happen anyway. A global pandemic didn’t cause me to lose track of who I am. An American president who sounds and acts like the bullies I endured as a kid wasn’t necessary to dismantle my confidence.
The things that broke me were ordinary things. Work. Love. Family. Friends.
Me.
What broke me was a perpetual conflict between who I was and who I thought I was.
I thought I was a normal person with a few talents who inexplicably and erratically failed at life, temporarily. I thought I was just a little hamstrung by my emotionally weird family and my backwater childhood in the rural south, and that with enough time I’d learn the ropes and slay a few personal dragons and come out somewhere on the other side of OK.
I didn’t know that my erratic cycles of success and failure were because my autistic ADHD brain doesn’t actually work well when I try to force it into neurotypical structures. My strengths (empathy, pattern recognition, observation, bravery, humor) were also my weaknesses (emotional dysregulation, hypersensitivity to threat, hypervigilance, self-deception, inability to read the room). I thought I was a normal person with a bit of a failure problem when actually I have always been a really weird person with a talent for hiding (even from myself) how much I struggle in a world that isn’t built for me.
That is a big thing for me to take on board.
I mean, it’s a tremendous boon that is going to change everything mostly for the better. It’s the breakthrough I needed in order to survive. It’s kind of everything. It feels like I’ve been wandering in the woods forever and I finally found the path.
But it’s taking me a bit to get used to it.
I can see that further on along this path I’m going to find and rebuild myself. I can see that because I’ve seen it happening to other people in the late-diagnosed neurodivergent community. I can see that my life is going to improve. I’m going to be OK.
But I don’t know how.
I don’t know how I go from rolling burnout and perpetual meltdown to some new, more comfortable version of me. I mean, right now I’m basically faking functional and trying not to freak out every single minute of every day. I don’t know how I find my sense of humor or my sense of self again. I don’t know how I will rebuild my confidence – and my personality – into something sustainable and reliable and real.
All I know is that what I shouldn’t do is push it. I can’t keep faking normal. I can’t pretend to be what I used to be and hope it will all turn out OK. I can’t keep functioning as if I’m normal.
I’m not.
What I am is autistic with a sprinkling of ADHD. Somewhere in my faltering self-concept is a foundational belief that this is something I can be proud of. I have, I think, an extraordinary brain. Not extraordinary as in “better than”. My brain is spicy: different, wild, rich, unexpected, useful, tricky, and complicated. I think the talents I used to have (minus the one where I hide my struggle from myself) can come back in new ways. I will find ways to be funny/smart/brave/warm/curious again, plus maybe some new talents or skills borne of actual self-knowledge and the lessons of my community.
I choose to be confident that I can become confident again, once I better understand the things I need to feel OK and learn how to make those things happen.
And so I move forward. Slowly. Carefully. Not pushing. Giving myself the grace to fail again – because I will – and recognizing the small successes on which I hope to rebuild myself.
I may not ever be cool again. Maybe that’s OK, if instead what I become is me.
Jarles Bernhoft’s intermittently strangled guitar strum is a sensory pleasure for me. Listening is a stim.
I had a camping vacation planned last week. Following my typical yearly pattern, I took off the week after my team’s biggest event of the year (a global sales conference that we plan, execute, and build training for) to go camping in my favorite spot.
It’s a state park on the Washington/Oregon border on the bank of the historic, cold, wild, epic, gorgeous Columbia River. The park is surrounded by orchards spilling over with ripe stone fruit (peaches! nectarines! apricots! cherries!) and it snuggles up to an old, old railroad that makes perfect west coast railroad sounds.
It is one of my top ten favorite locations on this planet.
We stayed one night…
…because I could not stop crying, could not get out of the (hot hot 105 degree) tent, could not eat, could not speak, could not even drink water.
We came home with a whole week left on our reservation. While my husband used the time to catch up on some home repairs (which is usually my happy place), I sat. I sat, defeated, and I watched the same 10 movies over and over and I smoked a lot and I slept and that’s kind of… it.
Turns out, I am burned out. Autistically burned out. Like, that thing that autistic people go through. I’m going through it. Right the fuck now.
And I’d love to write something moving and relatable and full of gorgeous imagery about that – what it feels like to me – but… I can’t. I’m burned out.
And it turns out, looking back on my adult life, I think I’ve been in a kind of rolling burnout since something like 2006. I’ll talk more about the history of burnout in my life in another essay, but here I just want to chronicle some features of my current burnout and a few things I’m learning about it given that I now actually understand that this is related to a condition (autism) that I only just realized I had about 3 months ago.
I’m giving myself permission not to write this with any skill at all, because I’m burned out.
Here’s a list of things I’m seeing in myself now that I have the autism lens to view it through.
Extreme emotional responses – rage, terror, and a nearly irresistible urge to throw, rip, crush, or pound things.
Meltdowns 3-5 times a week about a wide variety of small and large things.
Deep existential anxiety about what’s required of me and how little confidence I have that I can do it.
Confidence crash. No confidence. Not even a little. I can lie and tell you I feel confident but I don’t.
Selective mutism, loss of vocabulary, loss of the will to speak, losing language in the middle of sentences, sometimes straight-up aphasia.
Deep fatigue.
Etc.
I want to be able to write with more skill about this experience, but… I’m burned out. Like, all those things that I listed above? Most of them are happening right now. As I write this. Right the fuck now.
(Take a minute to let that sink in. I’m a writer. I write and speak for a living. I’ve run out of words. I am unable to write or speak except with the most rudimentary skill. I mean… who am I?)
What am I going to do about this? I really don’t have any room to rest right now. This time of year is a full court press at my job. That’s the rhythm of our sales year: the “slow” period for our sales team equals the busy period for my team (who builds their training and performance programs). So that week I got off last week, where I didn’t camp but just sat and smoked to much and watched the same movies over and over? That’s the vacation I get, at least until late fall.
And yet… this feels really big. Like, it feels like if I can’t stop this burnout feeling I will be at risk for all the bad things. Bad health outcomes. Bad relationship problems. Bad job stuff. Bad money shit. Bad craziness.
To be honest, I don’t know what I’m going to do. But I have figured out one thing: no matter what I choose to do, it has to be less.
Like, I need to find all the ways to do less. I’m not just talking about working smarter instead of harder. Yeah, that’s gotta happen too. But like… I need less…
talking
noise
light
decisions
pain
variation
surprise
people
meetings
details
arguments
listening
distraction
input
I need less of everything. Except air. I need a lot of air.
And I’m pretty OK with the 3 cases of peaches (Rich Lady variety) we bought on our way up the bank of the Columbia. Imma eat a lot of those.
The crappy speakers in the crappy smart TV in my office at home, where if I’m honest I sleep more than in my own bedroom with my husband, are blaring O Children by Nick Cave and the Bad Seeds on endless loop at full volume, which is honestly mostly distortion and fuzzy backing chorus.
Concealed by the distorted music, I am screaming.
“I’m happy Ma I’m having fun. The train ain’t even left the station…” growls above my agonized wails of all-the-emotions.
I am a bag of ants. Agitated spiders. The angriest of demons. The most terrifying of angels. To be completely on the nose, a runaway train.
Stress and tears and age have blurred my vision so much that I can barely see what I’m writing. My reading glasses slide to the top of my head – there that’s slightly better but not good enough – it will never be good enough if I can’t stop screaming.
Even in those moments where I’m silent, in my mind, my heart, whatever that thing is that is me, is this wail – this ragged scream of extreme distress.
I am autistic. I am having a meltdown.
I am rocking back and forth on the fulcrum of my hips, with increasing violence that only the effort of writing this can limit.
I feel a knot of pain I cannot describe or control. It is just a scream. A continuous scream that my breath and my vocal cords cannot sustain, and so it happens in my head.
I am having a meltdown.
I struggle to remind myself: This is not my fault. This is a common experience. I will learn to manage it.
Being alive at 56 having failed so much at things ordinary people can do without thought has produced this intractable mass of grief and anger and pain that will not ever leave. At this point in my life every trauma is about all the trauma. Every distress encapsulates all the distress of living this many years failing to live up to the potential I was told I had, all these years of the same failures – money, communication, love, comfort – over and over and over.
I am autistic.
Most of the people in my life don’t know this. They don’t know that I go through this. Only my husband knows. Only he sees this monumental distress, this near-fatal inability to find my center. He knows the screams that I allow out – maybe 10% of the screams I feel internally, but all I can sustain out loud. He knows the slams of doors and the objects thrown against the wall and the deep frustration of living with someone who cannot articulate her pain.
But he doesn’t really understand because how could he? He’s not autistic.
(He’s also not the point of this.)
(The ten seconds between repeat on this song is excruciating. I need the drums to come back. I need the repetition of the guitar strum. I need the solid mass of the chorus in the background. I need Cave’s gravelly painful lyrics, the voice that sounds like it hurts, because it’s like my voice after I’ve screamed into the pillow until I’m exhausted – into a pillow because it’s a beautiful summer day and my neighbors are having a party and I cannot have them hear this.)
The point of this is to record what this feels like. This nearly-weekly meltdown. This thing that happens when the thing I care most about – using words to connect with people I love – fails. As it does. Repeatedly. Consistently.
And the pain of that repeated failure is killing me. Every time it’s bigger, more painful, more like someone is dragging my soul out of my body with a dry thick ragged rope that cuts my flesh and tears at the remaining fragments of my self. I am shreds. Shards. I am bloody. Every time, this tears me down more. Every time communication fails, I am left more lost, more hopeless, more terrified.
And yet, by what you’d see of me in public, what little you’d see of me in public, at my job, on the street, you’d think I’m just an old woman. Nothing special. Nothing dramatic. Pretty good hair. Worry lines on my forehead. A bit of a limp. Did I mention pretty good hair?
I don’t want to tell you what caused this meltdown because it isn’t important. And also, maybe more importantly, I don’t think I could explain it. I got frustrated, my husband misunderstood me, there was a conversation… and now I cannot breathe, still, even while writing this. I cannot sit without rocking back and forth. I cannot open my mouth without today’s mantra – “I can’t I can’t I can’t I can’t I can’t” – exploding out of my face like the pressured and foul and bloody contents of a pustule.
(This song. I don’t even understand what it’s about. It has the shape of my long-abandoned childhood religion – we were fundamentalist-adjacent – but it is darker, more hopeful, more painful, more ragged.)
“I’m hanging in there don’t you see, this process of elimination…”
It’s been about fifteen repeats of the song since I put it on. I am starting to be able to breathe. I still feel like my chest is ripped wide open. I still feel so much pain – but it’s quieter now.
And I am calm enough to reassure you – I am not a victim of some unimaginable Hulu documentary-style trauma. I am simply autistic…
…and because the realization that I’m autistic came so late (at 56, less than a year ago) I never had a chance to understand how I work, who I am, to put the continual trauma of just being fucking weird and wrong all my life to bed. I haven’t healed anything yet. I am only just at the point where I understand where my failures have come from – my unsupported and misunderstood difference from the rest of the world – and not at the point where I can do anything to make it better.
And in the middle of a meltdown I cannot even imagine how to make it better, but I understand that it’s possible. I have seen in other people the transformative effects of self-awareness and community, of self-forgiveness and grace, of rest and understanding and research and reframing. But I’m not there yet.
Where I am is that I have words for this pain – it is an autistic meltdown – but nothing that will make it better.
Except the endless repetition of Nick Cave.
“We’re all weeping now, weeping because there ain’t nothing we can do to protect you…”
I don’t know what the fuck he’s talking about. But I feel myself, recognize myself, my ragged self, my beaten and disappointed and broken and lost self, in his damaged voice.
“They’re mopping up the butcher’s floor of your broken little hearts…”
I am starting to be able to breathe more deeply now.
I do understand it. I understand that the small differences between how I process the world – take in information, use patterns, deal with collaborative and collective experiences, manage emotions – and how it works for most people… those differences are small but over time have become profound.
Profound because of how much unrecognized trauma I’ve taken on cumulatively.
Profound because every incident where I didn’t understand or manage what was happening around me has metastasized into an uncombable mass of ugly rot.
I do understand that it will get better. I mean… I have a word for this experience now. Meltdown. And I have a whole community of other late-diagnosed autistic women who can validate me and add data points and share what they’ve learned. And hold space for me while I catch up. And raise their voices in a comforting chorus behind me while I wail out this …these … all of this …
Words fail me. I don’t have all the nouns yet.
My marriage may not survive this. My confidence and sense of who I am are already casualties. I have friendships that won’t ever be resurrected.
But I know now why. I know that I’m genuinely different from the person I thought I was. And I know from watching people I’ve learned to trust that it gets better. That there are skills and lessons I can master. That there is hope.
“I was held in chains but now I’m free. I’m hanging in there, don’t you see…”
And so I sit here rocking, feeling the music wrap around me resolving and unresolving and re-resolving over and over just like me, tears slowing a little, breath deepening.
My voice, damaged from decades of screaming in crushing pain, joins the chorus.
CRACKMEATJUICE 