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!
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.
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.
Jane’s Stim Playlist (Wind Me Up)
Wind You Up
Norwegian R&B – honest to god technomage
I Like to Move It
Ukranian – accordion, marching bass drum, and other embarrassing instrumentation
Danny’s All-Star Joint
Rickie Lee Jones
Rats & Raccoons
WHAT APOCALYPSE NERD DOESN’T LOVE THIS SONG?
16 Shells from a 30.6
I cannot have a playlist without Tom Waits in it. It is ordained.
Peaches (1996 Remaster)
That bass line is pure sex.
The Mountain Goats
Since 2020, this is America’s theme song.
Lift Me Up ‘Till the Morning Comes
Oh My God Yeah Fuck It
Mike Doughty [feat Moon Hooch and Miss Eaves]
Are You Gonna Be My Girl
Come On Eileen
Dexys Midnight Runners
Arrow Through Me
Paul McCartney and Wings
The perfectly crafted pop song.
We Have a Dream
Nick Cave and the Bad Seeds
She’s a Genius
I Wanna Be Sedated (2002 Remaster)
Valerie (Version Revisited)
Mark Ronson [feat Amy Winehouse]
The James Gang
Joe Walsh is an oldschool guitar mage.
If you don’t know The Blow, change that now.
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.
This song lives in my root chakra, if root chakras exist. (Yeah, they really don’t. But it feels like they do. You know?)
Cold Steel Hammer
Big Rude Jake
Sister Needs a Settle
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.
Singing harmony with Natalie is a stim.
Seven Day Mile
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.
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?
Cool in a bottle.
Somebody That I Used to Know
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.
Walk Off the Earth
The acoustic mix on this cover, combined with ethereal and fluffy guitar strumming
Best cover of this song, even better than Sting’s original.
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
More play with measure and phrase lengths.
Paper Mache World
If you’ve watched Heartstopper, you recognize this one.
Why Am I Like This?
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.
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.
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.