The following is a repost of a Twitter thread from Sept. 5/6 about how important it is when diagnosing mental illnesses to look for and rule out neurodivergence as a factor.
My observation is that most of us go through a lot of inaccurate diagnoses of mental illnesses before we're Dxed with autism. Honestly, that's the misdiagnosis scenario we need to guard against, not accidental neurodivergence.
I’m seeing among my friends past Dx’s of Major Depression, Generalized Anxiety Disorder, and Borderline Personality Disorder when it turned out they were #actuallyautistic or had #ADHD.
For some, that's not damaging: some treatments for these conditions also help for managing neurodivergence. BUT… failure to note the role that a neurodivergent condition plays in behavior and outcomes can leave the patient with an incomplete recovery.
SSRIs may help with depression that comes from not fitting in, or depression may be comorbid with ADHD or ASD. But it also may not.
SSRIs and other anxiety meds may help with anxiety due to autistic or ADHD traits or brain patterns, but they may not.
Behavioral therapy like DBT and other evidence based approaches may be effective with emotional dysregulation or low activation due to neurodivergence, but the simple behavior changes might not stick or might not be enough for someone with ADHD or ASD.
When I look back on the years I spent in talk therapy, taking SSRIs and benzos, and going through DBT training, I don’t regret that effort but I _know_ that time would have been better spent directly learning to understand and manage my ADHD and autism.
For me, I got a boost from taking SSRIs but the effect was limited because I couldn't use the extra emotional power drugs gave me to understand _why_ I felt like a failure with few friends and no safety.
The WHY of mental health was concealed from me without an accurate Dx.
Same with Xanax/Klonopin. They could keep me calmer but they could not stop an autistic meltdown.
And DBT was a full of life-saving skills for regulation, but many of the lessons didn’t work for me until I adjusted them to my specific presentation of autism.
It's easy to think that it's safe enough to treat a neurodivergent person with neurotypical methods, because some of these methods do work for neurodivergent people.
So, doctors ask, what’s the urgency to seek a new Dx if the treatment plan is similar?
My answer: The problem is lost time.
If I’d known what my real root challenge was (autism/ADHD) I could have been working all along on understanding how my brain and body work. Instead, I was stuck in 30 years of imprecise treatments and poor self-understanding.
Taking DBT as just one example…
I learned mindfulness, communication, and emotional regulation techniques. Yay. But they would have been more effective faster if I’d known that preventing emotional dysregulation is easier if I attend to sensory irritants and volume of input (due to autism) and learn how to more gracefully exit hyperfocus (ADHD).
It's like learning to drive in a simulator, but really I'm only going to be driving on freeways crowded w/drunks. No driving class will help if it doesn't teach the real conditions of the road.
Because I grew up not knowing that my mind was atypical, I learned to brain without dealing with my brain’s real world.
Or like learning to cook in a perfect professional kitchen, then coming home to realize that my real cooking world is all cheap tools, bad stove burners, cats underfoot, and only packaged food from the 7-11 next door to work with.
Real conditions matter.
And so I am encouraging people around me to pursue at least self-Dx of neurodivergence _before_ they put years into SSRIs and traditional treatment. They may still want the traditional mental health menu, but if they understand the root conditions of their brain…
…and their real needs, they will waste less time and see better outcomes.
We as a culture are so scared of neurodiveregence that we don't include it as a core part of what we diagnose and treat.
Think how many terrible outcomes could have been prevented with an accurate Dx.
Continuing this 🧵
I hope it's clear above: I'm not a clinician or any kind of medical professional. I'm an autist with a special interest in diagnosis as a process.
Knowing that, I hope you'll indulge me as I roll the above ideas around a little. 😁
I want to look at the thought process around diagnosing and treating emotional dysregulation, from my perspective as a patient.
It's a symptom of major depression, gen anxiety disorder, BPD, trauma, and a lot of other mental illnesses. It's also a symptom of ASD and of ADHD.
Emotional dysregulation can look largely the same to an observer, but the internal experience of dysregulation can be really different, with (broadly stereotyping here) autistic meltdowns feeling very different from panic attacks, which differ from ADHD temper explosions.
Triggers are different. Physical sensations are different. Contributing factors are different. To the extent that emotional dysregulation can have a "desired outcome", those are different too.
Knowing this can have an impact on how you diagnose /and/ treat the dysregulation.
Another difference behind emotional dysregulation that is cause-dependent? The underlying anatomy.
I’M NOT A NEUROSCIENTIST, so I’ll just say in my layperson’s understanding of many articles full of big words I’ll struggle to spell, that the brains are different depending on whether the cause is ADHD (known structural differences), autism (AFAIK unknown if it shows up structurally), or trauma (emerging evidence of trauma effects on brain structure).
If the structures are different, it suggests that treatment should be Dx-specific.
And yet my success in getting the best treatment for the emotional dysregulation that my specific brain experiences depends entirely on whether:
my therapist specializes in neurodivergence
I have the time, privilege, access, and assertiveness to educate my therapist
And I have to say, in my experience mental health professionals who understand or have studied neurodivergence are super, super rare – especially those who treat a broad range of mental health issues.
And that's how I spent 30 years in therapy with excellent therapists and in excellent programs that, to a person, absolutely missed my now-that-I-know kind-of-obvious autism and ADHD.
They didn't know to look and they didn't know it mattered.
The other day I wrote this, a post about how a communication and planning failure plus rigid thinking derailed my first attempt to try stimulant medication for my ADHD.
I started Adderall the following day and that’s all going well, but I wanted to come back to that day when I’d planned to start Adderall and didn’t because of, essentially, an autistic meltdown. Looking back, what I see is that in broad terms my autism defeated an attempt to care for ADHD.
I had thought I’d maybe start this journey of unpacking my recent dual ADHD/Autism diagnosis by doing the easier (sort of) part: treating ADHD with meds. In abstract, I thought I’d use the ADHD meds to get a little more on top of my life, enjoy a little more motivation and energy and organized thinking. Then I’d use that extra room in my head to explore and understand my autism (and probably also a focus some effort few physical health things while I’m at it), and then I’d let those improvements fuel some healing in relationships like my marriage (which is still pretty solid but a bit banged-up from the past three or so years of me thrashing and unhappy).
Turns out it’s not that clean, of course. I can’t really separate out the conditions like that.
But more importantly, in practical terms, I realized that if I pit my autism against my ADHD (like, try to focus on ADHD without considering the autism), autism is really likely to put up a fight.
(also, THC really is a great tool for calming fight or flight)
“Autism will always win.” Yeah, that feels right and true. For me, ADHD has less pain associated with it, less trauma. (This isn’t true for everyone with this combo.) Autism is the part of me I really don’t understand and can’t communicate with yet, so she (yes, she) is the one who will throw a fit if she’s being ignored.
And that makes sense.
If ADHD and Autism were two children in my charge, ADHD would be the independent preteen and Autism would be the cranky toddler demanding that her needs be met… and mostly unable to communicate them. And she is absolute shit at waiting patiently while her sister gets attention.
It means I am going to have to be prepared that Autism will disrupt my plans if I fail to give it what it needs. That just has to be OK.
I need to develop a stronger relationship with my autism – understand her better, listen to her more, learn to give her the comforts and attention she requires.
Because she isn’t going away, and she won’t be ignored anymore, and also because autism is me. I can’t credibly pretend autism is a thing that happened to me that I can stop. It’s me. It’s the large part of me I spent most of my life pushing out, and that strategy failed pretty decisively. It’s the part of me that I need to get OK with, to enjoy and celebrate.
I’m not there yet.
But I am moving in that direction.
I’ve learned that I need to approach any situation where my autism could buck with a bit of planning and self-awareness.
(and possibly a sense of humor)
Hannah Gadsby said about learning to cope with autism, “I am always working to remove myself from all the cycles and patterns of hostile environments. I no longer search my behaviours exclusively for revelations about my character; I use my occasions of distress as ways to map the circumstances and environments I move through, and look for ways I can reduce my exposure to distressing situations. I have learned how to advocate for my own experiences instead of being ashamed of my pain and confusion. I stopped worrying about what I was expected to do, and worked on building an understanding of what I could do to make myself feel safe and calm.” (excerpt from Ten Steps to Nanette)
It’s good advice, advice I should take.
Because, like Hannah, I like my autism. It’s a giant pain in my ass and the world’s reactions to it have been a lifelong source of trauma since even before I knew it was a thing in my life, but it’s also the source of how I think. And I really really like how I think.
So OK. Autism wins. I have to put it first or it will force me to stop and pay attention to it. I get that.
This is a half-assed live-blog of my first full day on Adderall 10m 2x/day. Does the world need that? Jury’s out on the need for a live-blog but I believe the world will be a better place with a medicated Jane.
7:55a Here we go.
9:06a Well. An hour on Adderall and what I’ve discovered is that I have no idea what to expect from Adderall.
It’s hard to tell if the mild nausea and touch of GERD is from the drugs or from my fear of the drugs.
(My fear of the drugs is so far the biggest surprise. I’ve been so focused on how much I want this tool to examine how I feelabout this tool.)
9:08a Oh wait. I’m nauseous because I haven’t eaten. I brought in food from the kitchen but so far all I’ve done is arrange it on a tray. Welcome to ADHD.
Apparently when I attack ADHD with drugs, it’s gonna buck a little.
9:12a It’s definitely kicked in because my bowels are SUDDENLY AWAKE. Not in a good way.
(No, I haven’t eaten yet. Still fiddling away happily at formatting.)
But I can confirm that the first feature of my emerging new personality is gastrointestinal distress.
9:29a I still haven’t eaten.
9:30a I feel… yellow.
A friend (who isn’t reading this) just reminded me not to forget to eat. I laughed, so my new personality includes appreciation of irony. That’s comforting.
9:37a Making myself eat.
My goal today, loosely, was to do some real work for my job. So far that motivation is not emerging.
Considering opening my laptop now only because typing here will be easier. (Narrator: She never opened her laptop.)
I’ve heard about this: stimulants don’t automatically make you productive in the way you need them to. That’s fine. All joking aside, I know that all of this is really complex and the drugs are kind of an imprecise and capricious magic. Might become a more effective person; might summon Yog-Sothoth. (Or the middle ground: become a person who bothers to learn how to spell Yog-Sothoth.)
10:05a I ate something.
This (below) is me all morning but with everything, not just coffee. Clearly a single 10m dose of Adderall is not gonna fix everything.
It is interesting to note that so far the feeling of simulants in my body is a massive distraction. That’s funny and surprising. I don’t feel “speedy” (yay!) but I am hyper-aware of a whole constellation of sensations, from stomach acid to a mild burning feeling in my muscles and joints to, frankly, the simple existence of my hair. (This could simply be me being in my body, though, unrelated to the drug.)
10:14a Now Adderall wants me to get bangs.
10:15a I do feel really calm. My breathing feels deeper. Everything is about 5% more pleasant than usual.
10:21a Time is different. I’m not sure I can explain how, but I think this new experience of time is going to be an adventure.
10:33a Observing that so far the pattern is about 2 hours of what I’ll call “burn” (acid stomach, weird but not useful change of focus, feeling of mild inflammation in muscles and joints, generalized discomfort) and now a really solid calm.
This is encouraging. One of the things I’m hoping for is better emotional regulation. I’m prepared for that effect to be indirect (drugs provide more motivation and general fortitude, I fail less in general, so I’m on more solid ground emotionally), but it’s possible the effect could be very direct: on stimulants I’ll just be calmer.
10:43a My intestines do seem to be full of industrious rodents.
11:04a Honest to Pete, I think I need a nap.
11:55a I didn’t nap. I could have but I didn’t want to miss my noon dose.
So I’m rounding the corner on the end of my first dose (4 hours) and I’m really not feeling much of it anymore. I think the 4 hour prediction is true. The first one wears off as it becomes time for the next.
I also suspect this dose may be too low. It’s true that 10mg had a dramatic effect on my gut, but I gather from others’ experiences that this gets better or you get used to it. Meanwhile I felt the calming effect on my frenetic brain, but only a little. And I really REALLY didn’t feel any urge to work, even though a deadline does in fact loom. (I’ll have to do this work tomorrow no matter what.)
Note to self: urge to work may need to be self-generated.
I’ll stick with this dose today and take the second 10mg pill in a few minutes, but I think tomorrow I’ll take the liberty my doctor offered and raise the dose to 15mg twice.
I do want to expand on how time feels. It’s pretty simple: in four hours, I never lost track of time once. Is this how time feels for neurotypical people?
Like, minutes just progress?
12:36p Took the second dose. With actual food this time. 10mg Adderall, 5 units insulin, granola bar. This may be the routine for a while.
(My autism requests please that I have a samefood routine for my meds. I get it. This is a lot, twice a day. My autism also wants please for that samefood to be scrambled eggs, but that’s a lot of steps. Granola is a compromise between ease and sensory comfort. Sorry, autism. You can’t win every cage match in a rout. Just most of them.)
12:52p New dose requires costume change. Hair up, blanket tossed aside, still pretty fucking autistic in the face (what is that expression?).
1:05 WAITAMINNIT. Is that libido I feel?
Yeah that was libido. Huh. Interesting. Also kinda boring. Y’know?
3:34p Got distracted by stuff here. House stuff. Partner stuff.
One note though: part of my conversation with my partner was about recent bad communication between us, and while it was distressing, I found I could easily back away from that momentary pain and turn my attention elsewhere. I didn’t melt down. I felt sad but not upset. Calm.
So, if that’s a feature of the drug, it’s a big win.
Rounding the corner on the end of the second dose, I definitely want to bump it up to 15mgx2 tomorrow. The drug feels safe enough and it’s really mild.
PS: Dry mouth is definitely a thing. So is forgetting to eat. And forgetting to smoke!
7:00a 15mg with breakfast
I’m starting the day with a mild headache that feels like dehydration so I’m pounding liquids and nasal saline to take care of that. (This is pretty common for me.)
7:57a There it is. The burn. It’s not unpleasant, but I can’t imagine doing this recreationally. And oh, so much dry mouth.
I suppose I should start work.
11:27a … And honestly I kinda didn’t feel the meds at all. Huh.
I mean I felt it wake me up a bit, and I was calm all morning. But I felt less gastric distribution and very little … Well, anything else.
I suppose if I try to bump it to 20mgx2 (upper limit my doctor recommended this round) the worst that can happen is that I don’t sleep well, and I dial it back the next day.
I’ll stop the live blog tho. Nothing interesting is going to happen here. As ultimately predicted by some friends, there’s no new personality waiting to be revealed. Just me, a little stronger.
Tuesday Quick Update
Today was my first work day on Adderall, at 20mg twice a day, or twice the initial dose (but within her guardrails for safe experimentation) and I gotta say, this felt great. Easily among the top 20 work days I’ve had in the last year. Productive, optimistic, enjoyed meetings more, took on less stress. Mostly, more confident.
Oh, and I found masking easier, and less draining. I minimize masking when I can anyway because I’ve been living on the boundary of full autistic burnout for several months, so I managed not to have to mask much today. But where it added value – like in a conversation with a colleague who has been stress-inducing for me in the past – I was able to hide sudden feelings and process them better in the moment and I was able to project the particular kind of normal he needs to feel comfortable even though it’s far from my actual personality. And I didn’t fall apart or need a nap afterwards.
So THAT is a really unexpected and significant effect of this drug, if it continues. Genuinely life-changing, even if it’s only an intermittent benefit.
I got my first prescription yesterday for ADHD meds. It’s immediate release, low dose amphetamines that I take twice a day. Now I get the adventure of learning how they fit in my life.
I took one late morning yesterday when I was already emotionally exhausted and frankly I hated how the drug felt on top of mild emotional dysregulation. I was/am aware that I will get used to the effects of the drug over time, but still, I hated that feeling right out of the gate. So… Fine. Try again in the early morning like I’m supposed to do it, and give the drug a blank slate and a chance to work.
I should have anticipated that my autism could defeat me. I should have seen the danger that I could easily set up if I failed to make a plan.
When I woke up at around 8:30, I thought, “What I want is a nice breakfast with my husband while the drugs kick in.” But in the course of bringing that idea to the husband what I actually did was massively misunderstand something he said, because I’m autistic and he’s not, and now I’m in full meltdown at 9 am on a Saturday, afraid to take the meds because I don’t want to start an emotional inferno when I DON’T KNOW WHAT THE DRUGS WILL DO.
And of course I’m probably fine, the drugs will be fine, but I’m not comfortable with getting this wrong. I’ve ruined the day and stolen from myself the opportunity to ease into this drug in a way that feels good and controlled and safe on an easy Saturday.
What I need is a guide to starting ADHD meds when autistic. A workbook for getting this right with all the extra autism complexity. Someone experienced and self-aware to walk me through it.
Because I’m realizing that my particular flavor of autism makes this complicated.
I know that I process emotional and physical sensations slowly. Stimulants will have physical and emotional effects, and they’ll happen quickly over the course of minutes, not weeks like the SSRIs I’m used to. So overall I want to keep things physically and emotionally simple. Pick an easy day for my first full dose schedule. Avoid unusual physical or emotional stress. Keep inputs gentle. I want this so I can focus on what I’m feeling and understand it. (I only just articulated this just now. If I’d understood this last night, I could have prepared my husband. He woke up this morning thinking it would just be an ordinary day.)
I also know that I’ll be calmer if I have good food and coffee, something comforting and nourishing. For that, because I’m mobility-limited, I need my husband’s help. But because I didn’t plan for this and I let shit go south, I’ve now gotten into a situation where I can’t communicate with him. I can’t speak at all right now because that’s what autism does to me under stress: I lose speech.
And honestly, it’s shitty to give my mostly wonderful husband a role in a morning plan with high stakes without involving him in making that plan. But I didn’t have a plan, so I set him up to fail.
Tomorrow’s plan should not involve him at all, I think. Not because he can’t be trusted to help, but because I can’t be trusted to treat him well when I’m…scared?
(Jesus, that realization hurts.)
It would be better to do this first morning routine with a partner, a buddy, but I have zero confidence I’ll be able to manage that.
I guess I mean I’ve blown it for today, which isn’t a tragedy because I have more days coming, right? We get a new one every 24 hours. But the larger sadness is that this keeps happening, these flares of what feels like extreme autism, defeating me over and over again with painful misunderstandings that do lasting damage to my confidence and relationships and my ability to get better.
I had thought that I’d treat the ADHD first, because the initial steps of that are clear (get drugs, take drugs), and let my freshly-clearer brain start to unravel the Gordian knot of my autism. And then I’ll be able to heal my marriage. But I’m realizing I don’t get to separate the conditions out like that. I may not be able to address them individually. Nothing is that simple. Brains are not that simple. Love is not that simple.
Humiliated by my failure, I’ve put the stimulants and my expectations for today away. It’s a cloudy Saturday so I’ve downed an edible and turned on cartoons like a college dropout. I’m just going to ride out today as quietly as I can and start again tomorrow, with a better plan.
Content Warning: suicidal ideation, childhood neglect, complex trauma. Please nope out if you’re in a place where reading about these things will trigger you. Come back later if you are curious and feeling stronger. Skip it altogether if you need to. You are the expert on the care and feeding of you.
I wrote here, recently, about the things I’m doing to overcome burnout, and here about some of the things that are still failing for me. Both of these posts are very practical: here are the things I’m trying, here are the problems I still have to solve. It’s almost transactional; work through the to-do list, solve the problems one by one, and we’re golden.
But brains don’t work that way. Emotions don’t work that way. Beneath the surface work, the practical steps, is a darkness borne of decades of pain and confusion that at this point I cannot manage with a transactional approach. I can only try to describe it, as a first step to stopping the damage that darkness does.
First some background. I’m 56 years old. I grew up in a town of about 1500 people in rural south Alabama – a small, poor farming community. It was my mother’s home town. My parents were academic-adjacent professionals. Mom had an MS in Education and taught in public schools, doing research and graduate work on the side. Papa was former military (Air Force intelligence) with an MS in Criminology who worked as a homicide investigator for the state of Alabama. (He was CSI before CSI was cool.) My parents had traveled the world (all over the US, the Philippines, Turkey, etc.) before settling in Mom’s home town after Papa transitioned out of the military.
I’ll note that this is the town where most of my bullying occurred, and where my mother had been bullied a generation before.
More background. My brother, 3 years older than me, is autistic. We didn’t have a definition for that when we were younger. It would never have occurred to my parents to have an evaluation performed for him. He was academically very capable and an extremely talented musician, so for them his struggles were “mostly social” and were just the sort of thing that my family thought one should just “live with” and “work harder on”. It wasn’t until he and I were in our 20s that I began to realize what I saw in him (the awkwardness, the toe-walking and “strange” gestures and frequent misunderstanding of social cues, the deep longterm special interests in philately, numismatics, and music) as indicators of autism. It wasn’t until his late 40s that he came to that realization, too. (He’s doing well now – a successful gig and session musician with a fantastic partner and many very floppy dogs.)
I tell you all this because now that I’ve also been diagnosed with autism and my own history is becoming clearer, I realize how profoundly our family was impacted by neurodivergence. Though my parents are dead now, I am nearly certain that my father had ADHD (that he managed fairly well with a kind of military discipline) and my mother was probably autistic (judging from how many of her struggles and how much of her life history matches mine). Additionally, judging from the amount of un-addressed conflict and addiction that I observed in my mother’s family, every single member of her immediate family were neurodivergent in some way, fully unsupported and undiagnosed.
No one in my family has ever been supported in our neurodivergence or in mental health. I am the first of us to go to therapy, to be hospitalized for mental illness, to get a formal diagnosis (ADHD/Autism), or to seek ADHD medication support (which I hope to have in a few weeks).
The problem for us, I think, is that none of us were so obviously symptomatic that we were forced to seek help – especially in the 70s and 80s when neurodivergence was only understood as a crippling developmental disability that deeply disrupted families and mostly happened in boys. We were all wildly unhappy and serially fucked up in a number of ways, but in our collective self-concept, we were “normal”. All of what I now see as expressions of neurodivergence felt to us like things we could just manage with more discipline or better scheduling – as if we should just be able to will our way to mental health and social wellbeing.
So it never would have occurred to any of us to seek help or look for explanations for our unhappiness. We were just like previous generations in our family: fine enough, functional, and we did our best not to whine.
(I know. The ableism in my family just wafts off this history in nearly visible waves like stink off a skunk. I struggle with my own internalized ableism every fucking day.)
I tell you all this history to explain this: I had a very specific role in my family: make things better. Of my mother’s two children, I was the one who was highly intuitive about the emotional state and social needs of people around me (something that, interestingly, until recently was understood by the neuropsychological establishment as disqualifying for a diagnosis of autism). I was “the good one” and “the capable” one and “the loving one”, and I was given the role of making sure our home was peaceful and my mother was calm and hopeful.
(Spoiler: I failed miserably at this every single fucking day.)
My mother saw in my brother a kind of intractable weirdness that she eventually gave up trying to change, replacing that initiative with mostly shame, the occasional admonishment, and money spent on things to keep him occupied. But because she kind of gave up on my brother, she had plenty of focus for me, making sure that I didn’t turn out “weird” like him.
In my more mature moments now, by the way, I don’t really blame my mother for this anymore, though I did for much of the time she was alive. I thought that she tortured me into being what my brother couldn’t be. What I recognize now was that she was also autistic, with all the same kinds of blind spots and spiky skillsets that I’ve struggled with, and she was utterly unsupported. By the time she was a mother in her 30s (with Papa traveling constantly for work – he attended to every suspected homicide crime scene in the whole state), she was already damaged by her own life in a small conservative town and dysfunctional family, unsupported in what must have felt to her like mysterious emotional storms. Just surviving day to day was a herculean struggle.
Given that her sister suffered with lifelong addiction, I should at least congratulate my mother for having avoided that. And I have enormous compassion for the effects of her being unsupported emotionally and neuropsychologically her entire life. I know what that feels like.
So it’s true that she did try her hardest to make me what my brother wasn’t – social, accomplished, happy – she didn’t do it to torture me. She did it because it was the only option she had.
That doesn’t mean it didn’t break me. Hence the darkness.
Don’t. Be. Weird.
My mother’s consistent message to me was simple: Don’t be weird.
Don’t be awkward like your brother. Don’t miss social cues. Pay attention. Make the comfort of other people a priority. Don’t embarrass me. Don’t make people ask questions.
DON’T. BE. WEIRD.
It’s an understandable message. She didn’t know why my brother was weird. She just knew she was embarrassed and she struggled to change his behavior. She could change mine, so she focused there.
The problem is, of course, that her belief that my “not being weird” was a matter of simple will blinded her to the fact that I struggled every single day to … you know … not be weird. I struggled because I didn’t know what to do – only what not to do – and I struggled because despite my 100% willingness to conform to social norms, I was bullied because, I guess, I was weird. No amount of will or willingness was going to change the fact that I was autistic, too, and on some level, the people around me could see that even if they didn’t have a name for it.
And my mother wasn’t the only one who told me to stop being so weird. My teachers stepped up to that plate, too, and Sunday School teachers, dance teachers, coaches, band directors, therapists, and friends.
I don’t think anyone in my life, including the behavioral scientists I saw in grade school (that’s a whole other story I’ll tell eventually), really saw how hard it was for me every day to balance my naturally expressive personality against the admonition not to be so goddamn weird. They didn’t see me crying. They didn’t see most of the fights (verbal and otherwise) that I got into at least weekly. They didn’t see me failing to understand. They didn’t see my confidence flag and then crumble. When they did see me breaking, mostly they treated these as isolated incidents. Nobody saw a pattern.
And they told me I could fix it all myself if I just tried harder. Nobody thought to go deeper, to look at it from the struggling child’s perspective, to see the patterns and the frequency of distressing incidents I endured.
They didn’t see the struggle because they were focused on changing me, not the circumstances around me. And they didn’t see me struggle because – surprise surprise – I masked it. Masking was the only strategy I had that made any part of my life tolerable.
How Could You?
So here’s the thing. I get it. I hid my struggle so no one saw it. They weren’t incented to and didn’t have the more evolved frames to understand that this wasn’t a matter of will. I understand that this was inevitable given that nobody in my life had any idea in the 70s what neurodivergence is. I get that.
Still, no matter how unfair it is of me, there’s a little girl in here who has trouble forgiving the world for the times we lived in. Trouble forgiving the flawed humans who didn’t do anything, some of whom still don’t do anything.
Hence the darkness.
It burns in in around the edges of my consciousness when I’m in that fucked up place where I am not certain I want to keep living: the thoughts I don’t like to think because they are unkind and unfair and very, very dangerous to my ability to stay alive.
When I melt down, when I am burned out, when I can’t find my calm and it’s late at night and the tears take over.
I will never find a place where I fit.
I don’t deserve help.
But most importantly, most clearly, ringing like a crystal bell past the actual sobs and the silent screams:
How could you watch a human child struggle and not do everything you could think of to help?
Fair or not, understandable or not, in the loneliest corners of the early morning, it’s difficult for me to understand a world full of people who can watch someone vulnerable struggle and cry for help, and not find a way to answer.
I’ll be fighting that darkness for the rest of my life. If I end my own life ever, it will be this particular darkness that made that happen.
It’s possibly the most authentic mask I have. In writing I can give myself the freedom to be weird or to say the things I censor in conversation. I worry less about making mistakes (e.g., showing my still-persistent internalized ableism, which I’m hoping to talk about in a future post).
But still this is a mask. I find it difficult not to add a breezy veneer of competence and optimism, a women’s-magazine-style reassurance that all this is doable and even possibly easy. That breeziness is sometimes true but mostly it’s a lie that allows me to write at all when in fact I’m not OK, this is not easy overall, and the things that are easy are so easy they’re almost facile.
(It’s like those articles in Seventeen or Cosmo that give you “Six Ways to Lose the Weight Fast!” or whatever, and that just have really easy and obvious advice that certainly everyone reading has already tried, or which fall apart with the most basic scrutiny or effort.)
Breeziness is my fake confidence. As if the consequence of revealing my very real and persistent doubts is that you won’t read this at all… which is a perfectly dumb construct created by the part of me who believed my bullies when they said I’d never be good enough or accomplish anything.
It’s like I’m saying, “See? Breezy! No big deal. I’m fine. You can depend on me.”
When, in fact, you can’t really depend on me if I’m pretending to have my shit together.
I sent a recent post of mine to an acquaintance who was struggling, hoping that there’d be some ideas there to help him. Then I went back and read the post from the perspective of someone who is dealing with burnout and I was deeply embarrassed. I failed to acknowledge that he has been doing this longer than I have, and that whatever seems easy to me is undoubtedly freshman-level stuff. It’s not inappropriate for me to crow about having mastered the self-management equivalent of Freshman Comp and Intro to Calculus, but I need to work on understanding the vast distances I have yet to travel…
…and my gut says that one early step to understanding those distances is to stop masking in my blog. To stop pretending that I’m OK and everything is working out. Or to at least be self-aware and transparent about the struggle.
Because, as I said above, I’m really not OK. Yet. Shit is dark, and that darkness is real. If I’m going to help myself (or anyone else) with this blogging exercise, I need to be real about all that dark shit, too.
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)
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.
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.
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.
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!
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.