Real quick because I have super fun things to do with my brain tonight (researching how something software-related works), I had a surprising day today. Two things happened at work that normally would have completely sunk my mood and my confidence (and also killed my ability to do super fun research tonight)… and I was fine.
Still am, in fact.
Yeah, it was weird.
The first thing was a confluence of corrupted file and impending meeting. Instead of freaking out and making 45 rapid-fire bad decisions ending in tears and poorly-concealed damage to my confidence, I postponed the meeting, moved some shit around, and found 2 hours tomorrow to recreate the file. Without guilt, without self-recrimination, without apology.
Like a boss.
Weird, right? Like, there’s a picture of me falling apart weirdly and overcorrecting poorly under pressure embossed on the cover of The Burned-Out AuDHD Playbook. Wasting my own time by getting upset is my path.
The second thing was an encounter not worth describing except to say it was a meeting with an agenda comprised entirely of toxic dude being toxic. And it didn’t tank me. I wasn’t furious. I kept my hope and my confidence. I wasn’t derailed by my attachment to futile causes. I took action where I could to protect my team and raise a flag, and then I walked away. No tears, no existential dread, no deep dive into my powerlessness. Just do what you can and move on.
During all this (maybe this is a third surprise?) I recognized something I normally fail to see: I was surrounded in both situations by people who could help me carry the weight, who were willing to take a turn holding the banner.
That was an unfamiliar feeling. I suspect that in the past I’ve taken on too much responsibility when I didn’t need to because I couldn’t see how much help was available. I mean, sure there were also plenty of times when I had no potential support in difficult times and I was right to feel alone. But maybe I’ve been overlooking support I could have leaned on more often, too.
Today, knowing I wasn’t alone allowed me to have a measured response to things that have fucked me up for a day or two in the past.
So what’s driving this sudden, calm wave of situational awareness and executive function badassery?
I think it’s because for about 3 weeks I’ve been taking my full prescribed dose of stimulant meds. Instead of scrimping and hoarding to protect myself against more Adderall-shortage bullshit, I’ve been taking the full amount (still small by some standards) and feeling a little bit like unadulterated me.
Yeah, so there’s a lot to unpack, a lot more to observe (2 anecdotes aren’t data), I’m not a neuroscientist, and stimulants can be dangerous. But I think this is a solid, safe hypothesis for me… so watch this space for more as things develop.
A wise friend (Mykola Bilokonsky of the Public Neurodiversity Support Center) taught me that during times when I can’t be the nurturing, compassionate, decisive, emotionally intelligent parent-Jane that my inner children need (usually because I’m too distressed), I can summon her.
I do that a lot now. When I’m unable to find my way out of a terrible emotional place, I talk to her and tell her what I need, or I tell her that I don’t know what I need but I know she will. Usually after I’ve slept or deeply focused on something else, she shows up with some perceptive, compassionate whatever.
This is one way I can get the compassion I need to give myself when I’m overcome with anger or grief, and at risk of (or unable to pull out of) a rolling meltdown.
My inner children have more snot.
But it takes a bit of time to work.
And by “bit” I mean, like, overnight or half a day later, far far longer than is useful to calm a meltdown in a meeting, say, or at the doctor’s office, or (Spaghetti Monster forbid) talking to cops. Those times when things could go very, very wrong.
And though usually help arrives from my parent self in a few hours, it often takes too long to fix a ruined day.
In all those distress situations, for me, the most reliable medicine I know for snowballing rage or grief or panic is experiencing compassion from a trusted source. Yet when I’m really distressed… that’s when it’s been historically harder for me to inspire compassion from other people.
(I mean… Those of us who mask autism consciously or instinctively, we mask meltdowns in public for, like, existential survival reasons, right?)
So I need to be able to help myself. And to do that I need more tools for delivering self-compassion.
I need more ways to show up for myself, more reliably. I need self-compassion capabilities that I can’t disable with eroded executive function.
In pursuit of that, I’m trying to teach myself to respond to sudden strong emotions by calling up the feeling I get when I’ve experienced compassion in the past.
Because it has happened, and there’s a particular brain chemical mix that comes with the experience.
I’m not a neuroscientist but let’s just say it’s a tonic of boxytocin, flairotonin, and a dash of schmopamine. In proper proportion, these ingredients feel like safety. Received love. Welcome.
That would be a useful thing to be able to feel more often.
Neurotypical advice for getting more of that sweet sweet self-compassion brain chemical cocktail goes something like… Give yourself some compassion in these moments.
That never made sense to me, but then most neurotypical people don’t have to strip the walls of the rooms in their brains down to the studs so they can continually tinker with the wiring. They just plug shit in.
To solve a feeling/response problem I need a mechanism, a set of inputs and the machinery to transform them into brain chemical outputs. (Imagine H. G. Wells’s time machine except instead of traveling to Morlock-land it spits out little gift boxes filled with feelings.)
To use a different metaphor, I need a spell to cast. A call to prayer. An invocation.
I can trigger a brain chemical mix with a picture or a word or a color or a sound. I can let myself experience the sense memory associated with it, and then the emotion package arrives.
(I’m pretty sure neurotypical people do this too, but I think having a conscious process for doingthis is one of those steampunk workarounds people with alexithymia build because feelings are arcane and shimmering and decidedly blurry magical beasts to us. At least I think so.)
In any case, I know from experience that I can call up a vivid and realistic emotional experience reliably if I know the right mental switch to pull.
Right now I’m focused on two things: finding the right switch to turn on the feeling-of-received-compassion machine, and building the habit of pulling it.
Interestingly, the first requires me to ask my autism to page through catalogs of detailed sense memories to fight the most reliable evocative one, and the second requires me to engage with my ADHD in the tango of routine-creation.
(Because oh yeah the source of most of my lifelong struggles and capabilities is the spicy #auDhd stew soaking my brain. I mean… ofcourse.)
Adventures in brain tinkering continue.
I guess the point is this: I’m starting to break the problem of self-compassion down into smaller chunks, into problems I can solve and machines I can build, and that feels like the right path to be on.
PS: Myk, mentioned above, is taking clients and worth the money. He is neurodivergent, he’s living this struggle every day, and he’s good at real and trustworthy compassion. He’s made a difference for me.
This afternoon, while trying to rather-aggressively decompress after an overstimulating day, this song (“We Have a Dream” by Norwegian R&B songwriter and supremely listenable polymath Jarle Bernhoft) came around on the meltdown prevention playlist…
Worth a listen, even if simply to bask in Bernhoft’s neurodivergent commitment to justice with a chilllll, smooooth backbeat for 5:12.
… and a lyric snagged me out of my angry-chair-rocking stim trance.
I am who I choose to become.
Jarle Bernhoft in “We Have a Dream”
It was one of those lyrics I’d never really heard even though i’ve listened to (and sung) the song a million times, because the music and harmonies are layered and the song is dense with meaning and metaphor. Who has time to unpack all of that when the auDHD special interest deep dive to-do list is already too long?
One of those.
“I am who I choose to become.”
It stopped my meltdown so fast there were screeching noises, and I cocked my head like one of those gramophone terriers.
Let’s see if I can post and properly attribute a very specific image, on the mobile WordPress app, after the edible I took as soon as I felt a meltdown threaten, hits. Without my glasses. And the answer is nope. Can’t. Wikipedia link below, which links to the Wikimedia image attributions page for this picture, and the story of how a long-unsold painting became a logo and a brand icon.
(Jesus, WordPress. It took me DAYS to find the slightly-stoned-aging-autistic-to-neurotypical UX translation dictionary I needed, to figure out how to make a hyperlink in the Jetpack phone app.)
Anyway.
“I am who I choose to become.”
It felt like a weight clanked into place in my brain.
Of course. Because it isn’t just a reminder that justice is a choice.
It is that, but it is also…a thing a lot of ND people have come to understand in a different, more personal way. Often painfully.
Speaking for myself, choosing who I am going to become hunkers near the white hot core of my high-masking auDHD experience, for better or worse.
Choosing who I am going to become, masking my differences , is how I made my bones as a somewhat successful autistic in a neurotypical world. And I did it for sincere, earnest reasons, because I wanted to do well and do good. But I did it without full awareness of how exhausting and damaging it was for me.
And so, inevitably, choosing who I am going to become is what catastrophically burned me out and left me low-key traumatized over and over and over.
But, see, also, on top of all of that, I’m starting to think that…
Choosing who I’m going to become is what will, dog willing and the creek don’t rise, save me*.
*assuming a wide range of definitions for “save”
Let me take a minute and say this again, for the Janes in the back row, because this is new.
This thing is what nearly killed me, several times.
And this thing is what may save me.
“I am who I choose to become.”
There’s a lot to unpack here, and I’m not capable of doing that with any grace right now, even if I were clear and fully focused – which I very much am not tonight.
Choosing who I am going to become left me low-key traumatized.
But…
The basic thought I’m having is that knowing “who I am” has never been easy for me. But choosing? I can do that.
The thought of choosing who I’m to become now, now that I know so much new stuff* about my brain, just isn’t that strange to me.
*Late diagnosed auDHD. Nice to meet you.
I can see in my mind how it works, how the cogs and wheels relate within a complex system of decisions. That’s satisfying.
Then I hear the little ping that tells me to pay attention, to listen closely now to the part of me that’s slow to share.
This is important. I think.
I’ve been choosing who I’m going to become all my life, since long before I had words for the feeling. I do this more often and more explicitly than most people do. I’m really good at it.
And it seems like making those choices intentionally and authentically* might be a part of creating a sustainable Jane… or at least one that has another 20 or more years of battery life.
*whatever “authentic” means
Choosing who I’m going to become is what will, dog willing and the creek don’t rise, save me.
As a reassurance for those of you who have a dog in the Masking-is-Heathy/Masking-is-Destructive fight, let me please say this clearly: I am and will likely remain strongly Team Fuck-Masking-It-Can-Die-in-a-Fire.
But I also recognize that in my practical reality, masking is a thing I sometimes need to choose, at least until I have better solutions.
I am and will likely remain strongly Team Fuck-Masking-It-Can-Die-in-a-Fire.
Meanwhile, in the gritty friction around one thing being both an existential threat and a path forward…
Over on the roiling hellscape that is Twitter, in the calm bay of the neurodivergent community, Heather Cook (a neurodivergent therapist) is talking about “high masking” as a partial replacement for the problematic term “high functioning” in descriptive autism lingo. I think that’s brilliant and I hope to write more about that idea soon.
But here I want to noodle on an adjacent topic spurred by her posts: that autism and the traumatic effects of living as an undiagnosed neurodivergent make me bad at recognizing when I need to ask for help. Some of that is because of the particular things autism does to my emotional processing and some of it is the ND experience of being taught to doubt my interpretation of reality.
I remind myself of this as often as I can. This is at least half of my strategy to get better at asking for help, esp @ work.
Sometimes the thing that needs fixing isn't me. We can't fix it if I don't speak up. https://t.co/pXvig6l5Tf
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) November 9, 2022
In a post on #HighMasking, Heather says, “[High masking] is what I’m calling it when you are so used to masking/pretending/camouflaging your struggles in order to pass as “normal” or avoid attention, often to feel safe, that your real struggles and needs are not noticed and [are] discounted when you bring them up.”
I remind myself of this idea as often as I can.
In fact, reminding myself of this is at least half of my strategy to get better at asking for help, especially at work.
Sometimes the thing that needs fixing isn’t me. We can’t fix it if I don’t speak up.
Imposter syndrome kills, kids.
One feature of my autism presentation is a heightened ability to sense when something “isn’t right” about a situation. Human systems especially: double binds, gaslighting, bad communication pipelines, likely failures of fit/skill/motivation. I’m the canary in your human system coalmine: my distress predicts your crisis.
That’s a really useful talent. Hypersensitivity is as close as I can get to identifying an autistic superpower, as problematic as the idea of superpowers can be.
(…and acknowledging of course that hypersensitivity extracts a massive toll on us, so it’s at best a superpower with a genuinely awful price in the absence of some accommodation*.)
*Here, I’m thinking chiefly of building-in support for executive function under stress, because (as I elaborate on later in this post) sensing the problem and acting on that sense quickly (usually under a deadline) can be tricky for some of us.
So yeah, the ability to sense hidden problems early is super useful to organizations and families and other groups of humans. And that’s a talent I’ll claim: I’m pretty good at what my team at work calls “looking around corners”.
I can taste risk. I can smell conflict. My feet trip on barriers. My central nervous system is a failure prediction engine.
However, and this is a big however, I’m pretty dang bad at knowing if the problem is mine to fix, or if I need to raise a flag and ask for help.
I tend to think “I saw the problem. I need to fix it.” But usually I don’t have the influence or reach to fix it alone; nor do I have the gravitas or hierarchical power to order people around.
Or I think “I caused this. I have to fix it myself or I’ll be exposed as incompetent.” I often think I caused things just cuz I’m near them.
Imposter syndrome kills, kids. Proximity isn’t causality. And autistic masking (this is the connection to Heather’s words above) doesn’t have to include taking on the burden of genuine systemic problems alone.
Also, often my genuine mistakes are made possible by crappy conditions upstream that need to be fixed even if ultimately the responsibility is mine to sort the part of the problem that I caused*.
*I prefer to frame this not as blame-shifting but as responsibility-sharing, which is a thing I wish we all did more of.
An autism paradox
The failure to recognize that some problems aren’t mine to fix alone – and my failure to ask for help – I attribute to alexithymia.
Alexithymia is a common autistic trait (though it is not exclusive to or universal among autistics). It is a difference in emotional processing speed, causing those affected, like me, to take longer to recognize, name, and act on emotional signals.
Essentially, I get the headline really fast (something is wrong) but the details of what is wrong and how it happened travel by snail mail. I usually have to act to fix a problem before I’ve fully understood how I feel about it.
It’s a paradox: my autism makes me really good at a thing but it also prevents me from doing anything useful with that thing most of the time.
To sort this paradox, I need to do one of 3 things: reduce my ability to sense problems, reduce the pressure to solve problems before I understand what I’m feeling, or figure out what I’m feeling faster.
That last one is where I think I can make a difference for myself. I can’t stop being sensitive to problems in my environment and I’ve only had spotty results in lowering the pressure to act fast. But I am confident that I can get better at:
understanding context more quickly
figuring out when to ask for help (problems I shouldn’t hide)
surfacing what I know to people around me who can help organize a fix
And I can pitch in to help.
That’s what I’m working on now at work*: quickly seeing the what/why of problems so I can ask for help early, before there’s a crisis in the system.
*Context: I am a program/project manager at a medium-sized tech company. I do learning strategy and planning. The problems I usually encounter are in the area of UI/UX or scalability but sometimes it’s about interpersonal stuff or my marriage or friendships or housework or the state of the world.
A database/library/toolkit of memory lego blocks (and mixed metaphors)
So how do I speed up my emotional processing so I see solutions faster & ask for help sooner?
My gut says to lean into two autistic talents: pattern recognition and rehearsal. (It seems those are the most powerful and underused levers in most areas of my life, but especially at work.)
I need a better internal vocabulary of the patterns around the problems I see, and I need to build a set of rehearsed, reliable responses to those problems based on pattern observation.
So I’m consciously starting a mental library of moments and memories of problems I encounter, and essentially rehearsing my best response to each one. Like legos or kit house modules or database records, these memories can be snapped together and rearranged until they start to resemble a map to the solution.
I need to notice and capture memories like:
THIS is what THAT problem feels like in my body. This is what I learned the last time I felt that way.
THIS emotion goes with THAT type of problem. This is what that feeling prompts me to do.
When I see THIS clue, I should look for causes/fixes in THAT area and get help from this list of people or functions.
Again, a more neurotypical person might look at all this cataloguing and remembering and think it’s dumb or painful overthinking, but that’s because some of this is more intuitive for them than it is for me, someone whose brain is not the socially-supported standard model.
I need to notice those moments of clarity and capture them, which for me means expressing them visually or verbally. I need to talk through or write or draw:
what I saw
how I knew it was significant
how I felt physically and emotionally (the “flavor” of the stress, the sense memory)
what ultimately was the cause or solution for the problem
That memory library becomes a bunch of little snap-together maps from which I can construct an action plan quickly: who to ask for help, who to work with on a solution, how to avoid knock-on effects, etc.
With a little stack of memory blocks, I can get help faster than waiting for my sluggish emotional processing to catch up.
I can compare now stuff to past stuff, find matches, and improve my solution-guessing average. Another way to look at it is I’m freeing up some much-needed executive function.
(I think this is how neurotypical brains get the benefits of experience, possibly effortlessly if they’re lucky. For me, though, slow emotional processing has impaired development of the wisdom of age. I’m not unwise but I have learned the wrong lessons often, usually out of shame or self-doubt*.)
*The shame and self-doubt come from bad narratives. I have that common undiagnosed ND habit of blaming myself for everything bad that happens near me.
At work I’ve had success twice recently in asking for help. In both cases I asked for help because I saw the clues and interpreted them early, largely because the situations resembled recent situations that ended poorly but were very instructive in post-analysis.
The stuff stressing me out was in one case an organizational gap (we needed a new process) and in the other a technical limitation due to early poor planning (about which I needed to alert leadership, then adjust my timeline to compensate).
1 The Black Box
First some backstory. The departure of my over-functioning unicorn boss created a number of gaps on our team. The gap that affected me most was not being able to see what work was coming my team’s way. Critical facts about product release roadmaps and longer-term priorities were suddenly invisible to me. The future was a black box. I couldn’t plan the work or ask for funding for additional help. My team was at risk of an unreasonable and varying workload. The internal audience I serve was in danger of not getting what they need from us in a way they can trust.
What we needed was a new process for planning and managing the greater team’s workload that is transparent to all of us and predicts the level of effort needed to get it all done.
In situations like this in the past I might have voluntarily borne the burden of creating and enforcing a new process alone, without the leverage or time to sustain that effort on top of all my other work. Disaster. Bound to fail. Super bad for me personally and professionally.
This time, though, I recognized an old feeling from a previous employer: gut-watering terror. That’s a longer story for another time, but the key thing here is that I learned (and later remembered) that you can’t fix a systemic problem from a single point in that system.
So I sketched out what I think the process should be on a literal napkin, took a picture of it, and sent it to one of our stakeholders, a nearby manager (not my manager, ‘cuz process isn’t his jam), and a couple of my peers. I got some feedback, then I drew up some simple slides and put it in front of the big boss. He loved it.
We are now collectively in the throes of spinning up a cross-functional planning “board” made of team leaders and stakeholders to manage the flow of projects for us. It’s scalable and has pretty solid initial support across everyone involved.
And I’m not crying at my desk or bracing for a job-ending oncoming train. I mean… I think that’s good, right?
2 The Clunky Stack
(Again with the backstory.) While making a change to our greater team’s technical infrastructure (the “stack”), we discovered a clunky connection between two pieces of the platform that makes for a potentially catastrophic usability problem for our audience. The folks in charge of these systems knew about the problem but it wasn’t a high enough priority for them to fix soon, given limited resources.
After a little asking around I learned that the problem started because in the initial plan to set up the new system they didn’t know to consider the very specific, apparently atypical way my team would use these systems.
It’s an understandable thing, not total incompetence, but failing to fix this oversight could be embarrassing for me, specifically, as the manager of the content that is served from this part of the stack.
I could imagine how to fix the problem (a little UX layer that provides a slightly better user experience) and I almost had the skills to build it. It was tempting to just say, “I got this,” and devote my free time and some sleepless nights to building something simple. But it would be shitty and badly coded… and I would then have to maintain it in perpetuity, alone.
What stopped me this time was actual nausea. I felt a churning in my gut and an extremely woozy stomach sensation that I recognized, again, from that same previous employer. The stress of that situation had led me to switch companies and jobs. My memories of the experience were a jumble of poorly-recalled executive function challenges, but I remembered one thing with absolute clarity: Stop trying to impress leadership by working outside your wheelhouse. (You’re not a handyman and this isn’t a one-room schoolhouse.)
That was all I needed to jumpstart the process of asking for help.
Now people with more power than I have are figuring out priorities and getting the skilled hands we need, while I focus on an interim low-effort way to soften the problem for our users. That’s my wheelhouse, the center of my skillset.
That shit’s a lot better than sobbing at my desk while searching job boards because I’m exhausted and feel like a failure.
And now the real work begins
Improving my asking-for-help skills is a slow process for me. I have a lot of lessons to catalog and turn into blocks, a lot of iterations of seeing problems and noting how I feel. I don’t know what I’m doing yet and I will fail a lot. It will take a while to build a good library of instructive experiences that cover enough of the problems I encounter to resemble actual seat-of-my-pants executive function.
I’m hoping doing this consciously helps me learn faster.
If I may spend a moment on a familiar soapbox, this is the power of knowing that I’m neurodivergent, finally. Most of my life I didn’t know my brain was different. I thought I was just born to fuck up. Because I have better models now for how my brain works and what it needs, I’m learning to how to build into my daily work and home life some of the supports I need to function more effectively, to thrive.
Fingers crossed my optimism lasts through the next year of problem-solving.
This is an expansion of a thread tweeted earlier by Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) on November 9, 2022.
While noodling on an existing special interest I may have acquired a new one: constrained writing.
Constrained writing, as conventionally defined, uses somewhat arbitrary chosen rules to restrict how language is used, usually in service of art and playful craftsmanship.
It’s a fun challenge, a game, to tell yourself, for instance, that all words in a written or spoken piece conveying real meaning must conform to the length of consecutive digits of Pi.
It can be a way to force some ideas to come to the foreground by boxing off others, like squeezing toothpaste from a tube or putting on a corset. I’ve done similar things with visual art (restricted palette, limited materials, boxed area on a canvas) but rarely with words.
And yet words are my medium of choice most of the time.
All language is constrained.
In a broad sense, almost all language is constrained: by social conventions, by personal preference, by what and how one wants to communicate. And yet we exist in this world of rules largely without examining those constraints.
For most people, the rules of communication are kind of intuitive. Again, broadly speaking, neurotypical folks are only forced to look at communication constraints when they use language in a sphere that is unfamiliar to them, like in an unfamiliar culture or outside their social cohort or when entering a very specialized domain of meaning. In their ordinary daily lives, most people (at least most of the people I’ve encountered) don’t need to know why they choose the words and phrases they do. It all just works.
And yet the cultural spasm we’re currently experiencing in the English-speaking world – a struggle over the ideas and “rules” of political correctness, inclusive terminology, and what the right calls “cancel culture” – could be eased (perhaps) with a more explicit acknowledgement that communication restraints already exist. We pronoun people (I’m she/they) and people of color and the rest of the bleeding left (of which I am a proud member) are not asking the world to constrain a heretofore unlimited world of expression. We’re asking everyone to consider adjusting the rules they already adhere to, to reduce the harm that unexamined language does.
Autistic language in a neurotypical world is doubly constrained.
Though I’m only recently coming to understand that I’m autistic, my lifelong relationship with words has been heavily colored by autism.
Most of my life in connection with other humans has been me grappling with mastering the rules of engagement, chafing against conventions that didn’t feel natural, wondering at advice I didn’t understand. It’s a lot.
Most of the words I write or say are in service of corporate communication. Lots of “rules” there. (Lots of masking.) Lots of “don’t be weird” and “don’t alienate” and “use this vocabulary” and “talk like they talk”.
I’m quite successful at it for someone like me. Yet I struggle every moment I’m doing it.
If all writing is constrained writing, then all my writing as an autistic human is doubly constrained:
layer 1: ordinary rules of engagement for communication and social interaction in my communities, which are often not intuitive for me
layer 2: my flawed interpretations of well-meaning but confounding feedback I have received when others believe I’ve failed to communicate properly… which I have typically internalized as rules, whether or not I’ve understood them
This is true whether or not I also choose to make all the words in a paragraph start with consecutive letters of the English alphabet.
(Before you waste all your time trying to figure out if this blog post is an acrostic or a lipogram or an elaborate series of interwoven haiku, I’m not that smart. And I have a headache. But do know that I DID consider it.)
I have carried the weight of constrained communication all my life, and I only recently am coming to understand how much of my cognitive effort is spent on a minute to minute shifting and management of that weight.
(I believe that my periodic struggles with situational mutism originate here: words themselves are easy, but communication is hard.)
Part of grappling with my autism is figuring out how to lessen that weight, or distribute it better, or however that metaphor plays out. I want to lessen the constant effort I put into communicating “correctly” and move into a more masterful space where I acknowledge and take control of the rules I choose to engage with.
I see you, rules. Let’s play.
In pursuit of mastery of the constraints.
An ordinary person’s response to constrained writing? “Cute game, but why?”
As an outsider to conventional rules of talk, I know that all our communication is constrained. It’s just that mostly people don’t know that because it’s all intuitive. Most people don’t question the rules, or even acknowledge their existence, and why would they?
This isn’t a dunk on neurotypical people; we don’t acknowledge the oxygen we breathe unless we have trouble getting enough.
Exploring the arch party trick of constrained writing as an autistic helps me explore the ways that sometimes-arbitrary but often necessary rules limit my own use of language, in service of being understood.
Mastery gives me more power.
Instead of being haplessly at the mercy of rules imposed on me without my consent by people who don’t understand me yet have considerable power over my success, I can decide which rules matter for my purposes.
That matters for my confidence and effectiveness, even if the shape of my communication doesn’t change much.
It’s about gaining control. Mastery. Flex.
I can choose when to foreground your comfort, and when to assert my own. What to emphasize. What to give you as a takeaway. What to weave in as gifts to myself (thank you, Hannah Gadsby, for that idea).
I can’t imagine what unconstrained communication would even sound like, but I can imagine how my own communication could bloom as I improve my facility with manipulating the constraints that surround me.
Shout out to one of my oldest friends @BeerSonnetteer, whose lifelong hobby of fucking with poetry forms like sonnets and double dactyls is a spectrum-y triumph of constrained writing. Big love.
And shoutout to the special interest that led me to find the concept of constrained writing: Hannah Gadsby (who is not just the object of my interest but also a genuine live human.)
The way she approaches storytelling structurally, with extraordinary mastery, is inspiring. One excerpt from her structure-perfect and process-transparent special Douglas is embedded below (but watch the whole thing on Netflix to see what I mean by “structure-perfect and process-transparent”).*
*Wow, that’s a lot of end-of-sentence punctuation. Let’s add an asterisk.
I’ve been taking a low dose of Adderall for about a month. How’s it going?
We weren’t sure what amphetamines would do to my brain. I have a real, bona fide ADHD diagnosis with real bona fide ADHD deficits, but most of the things I need immediate help with are more autism-related or in the grey area between ADHD and ASD.
Things like:
emotional regulation
tolerating interpersonal ambiguity
maintaining communication skills under stress
managing sensory input
managing inconsistent information processing speed
recovery from deep burnout-related fatigue
In other words, the autistic side of executive function stuff and emotional and sensory overload.
Could Adderall help me in those areas, or would it just help with ADHD stuff like time-blindness, motivation, and poorly managed focus?
Here’s a story that illustrates how things are changing in my life with meds.
My day job is with a medium-sized digital experience company. We make the software behind the websites and apps through which you encounter your favorite really big consumer brands, and my team trains our salespeople.
I manage a shifting team of freelance instructional designers and own a large catalog of tech-heavy courseware. I love my job (especially at this company) and I’m good at it, but…
Over the last 5 or more years I’ve observed that I am just too emotionally and politically vulnerable at work for my comfort, seemingly always perched on the flimsy border between rock star and towering failure. My strengths (gentle humor, technological vision, inspiring a team, problem solving) have been consistently undercut by two persistent and often debilitating bugbears: executive function failures and a hefty emotional regulation problem that can remove all access to the communication skills and critical thinking I depend on. I’m really awesome… until my deficits catch up with me and I fail at something.
[editing later: just to feel a little safer about this level of public disclosure about my brain and work, I want to clarify that when I say the phrase emotional regulation problem in this context we’re not talking about tantrums and public ugliness, ever. I’m talking more about needing to slow down as I process strong emotions under stress and a strong sensitivity to toxic work relationships and conflicting priorities]
Basically, my unmedicated brain is a badly-wired tesla coil – beautiful, sure, but also sparky, dangerous, unpredictable, and potentially very damaging to its environment.
My past work disasters have mostly happened at the end of really big, really visible projects (the ones where, if you fail, everyone sees it… oof). Launch dates and major go/no-go inflection points have lately been accompanied by terrible sleep and a lot of ominous foreboding; I’m haunted by memories of past failures and near-failures that destroy my confidence and color everything an ugly, cloudy yellow in my mind.
Typically the disaster pattern looks like this: a last minute change to requirements or scope forces me to make a decision while secretly melting down, I make and execute that decision without asking for help because I can’t think or talk, and I communicate about it in a way that erodes trust with the folks whose trust is critical to my success. The post-action analysis is brutal.
When I first asked my doctor to help me try Adderall, I was beginning a very large project very much like the ones that have beat me up in the past. I knew that even with great planning and perfect execution I’d still be exhausted and at risk for bad decisions and poor communication close to the end. Also, the “last mile” of the project was risky by design: my team’s output would be the first thing to go live in a shiny new piece of digital infrastructure that I knew nothing about and had no control over. I didn’t have enough time or brainspace to experiment with this new environment and still meet our production timeline. So I was going to launch a complex curriculum absolutely blind to how it would look and work when we were done.
I could see a train coming through the tunnel straight at me, even 3 months before our launch date.
While asking for Adderall had been a longterm strategy for my whole life, it was also frankly a hail-Mary pass to save this too-big project that seemed like it was just designed to break me.
I asked for Adderall the same week this project kicked off, but it took over 2 months of doctors hesitating and insurance balking before I could get the Adderall prescription made and filled. My launch date was only 2 weeks after I finally took the first pill, and the work was trending catastrophically behind schedule.
Fast forward to 48 hours before go-live.
90% of the new curriculum was built and tested outside the new system, and I had only two days to make it all work within the new system while my team finished the last 10%. Emails and newsletter articles were already prepared, ready to go out on Friday afternoon. This was Wednesday night.
I’d stayed up the night before finishing a difficult piece of production work that I couldn’t delegate. Sleep deprived, my plan was to host a project status meeting, take a 2 hour nap, then make an offering to the gods of learning management software and load everything into the new system. If we encountered no problems, we’d finish on time and we could sleep all weekend.
Of course, we encountered a problem. Of course it was a big problem. Of course it wasn’t something we could skip or fix or handwave away. It was launch-critical stuff. Shitty user experience stuff. Trust-busting stuff.
UGH.
That late-breaking problem should have triggered a call for help from me to leadership: “Sir, the new whatsit can’t do important things. Send help. Enjoy this perfectly acceptable stopgap in the meantime.”
And that’s where I landed eventually, but first I needed to fail at two kinds of communication, totally fumble the whole nap thing, and melt down spectacularly for about two hours (mercifully in private).
Adderall didn’t prevent the meltdown or the bad communication or the chronic lateness of everything we did, and it hadn’t been around long enough to fix the faulty planning I’d started the project with.
So… did Adderall help at all?
Yes. In fact, even though it didn’t do what I expected it to do (make me a golden god of productivity and leadership), it still made all the difference.
Let’s compare and contrast.
typical pattern without Adderall
new results with Adderall
– unforeseen problem emerges
– unforeseen problem emerges
– exhausting 24 hour meltdown – long tail of lingering personal and interpersonal damage
– 2 hour meltdown – refreshed and clear afterwards – only my cats as witnesses – immediately able to devise solid solutions
– lose ability to communicate or collaborate
– some communication impairment, not catastrophic, and collaboration OK
– can’t ask for help – can’t see the big picture – just hoping to god no one notices me fucking it up
– post-meltdown problem analysis – burst of creativity – clear vision of solution
then…
I. Asked. My. Boss. For. Help.
– zero resilience or sense of humor
– sharing a laugh with boss while discussing my proposed solution – high quality sleep for the rest of the week
– technically meet the deadline – spend weeks fixing problems we caused and calming angry stakeholders
– move the goalpost and claim the win – new plan to fix the infrastructure problem (immediately greenlit by management)
then…
– collected kudos from VPs for identifying a fix for an infrastructure problem that would have impacted our team for years
How did Adderall help? Did it reduce the spicier features of my autism? Did it make me less offputting to my managers? Did it make me more “normal”? Did it prevent me from melting down?
Nope. I’m definitely not less autistic on Adderall. I’m still a functional weirdo. I’m still pretty damn fucked when measured by neurotypical yardsticks. My project was absolutely headed for disaster.
But.
To me, it felt like the drug cleared some extra space in my brain, so that even as I endured a series of trauma responses and melted down, I could see what was happening and change my path. I could see that I was entering the old shitty pattern. I could identify my emotions and understand what they were trying to tell me, even if I couldn’t stop them from happening. And I could actually consciously decide to step off the path of the oncoming train and do something new.*
*If you’ve seen Hannah Gadsby’s Douglas on Netflix, take her bit about the “funny zip” that expands a suitcase without opening it and apply that metaphor to my brain. I found my executive function funny zip and my brain went spsss whoomp and I had all the extra room I needed.)
Holy shit. I could freak out and find solutions simultaneously.
I must not forget what a shock it was to realize I could have access to the capabilities I needed most during a time when I was profoundly distressed and exhausted and under tremendous pressure.
Honestly, this is so new to me. 30 years of talk and group therapy have made me pretty good at analyzing emotional malfunctions after the fact, but this Adderall-fueled sorcery may have been the first time in my whole I’ve prevented a disaster I created as it was unfolding, while keeping an overwhelm meltdown contained.
*Dialectical Behavior Therapy – emotional regulation techniques for people who suck at emotional regulation due to trauma or mental health conditions
I hadn’t even realized I could dare to hope for that.
It’s kind of amazing, actually.
I can’t wait to find out what all else I can do with my new and improved brain.
Like, maybe I’ll try planning my next project well from the beginning.
Maybe I recognize earlier in the next project that some risks shouldn’t be resolved with creative workarounds (a lateral thinking flex but not the best skill to lean into). Raise a flag. Ask for help. Listen to my gut, not my self-doubt.
Ooh – maybe I’ll invent a time machine and slip early-90s young adult me some amphetamine salts and a whitepaper on neurodivergence.
If I can’t manage to bend physics with a low dose of speed, maybe I’ll just enjoy the remaining 30 or so years of my life as a more sane, more functional, more connected human.
It’s tempting to just end this post and let you think that a stimulant solved every brain problem I have. If you need that hope, hey, you do you, ya cock-eyed optimist.
But the truth is, I mean, I’m just months into this journey and medication is just one tool I was lucky enough to have access to. I still have a lot more work to do to understand my brain and give it the things it needs to thrive. And even more work to be the human I want to be in the world.
Still, with medication I have that little bit of extra room I’ve always needed, so that I can do that work and have some hope of lasting cumulative progress.
Right now, that’s everything.
NOTE: Adderall is not crystal meth or street speed or gack. ADHD brains on Adderall are not “high.” Addiction is a vanishingly small problem among neurodivergent people who take stimulants under medical supervision at the correct dosage for their brains. Don’t @ me and don’t shame people for choosing medication. Also The Salton Sea is the shocking and beautiful crown jewel in Val Kilmer’s impressive (and very weird) body of work. See it. Thank me later.
I have five chapsticks, one for each room where I spend focused time, and one in my bag. Minimalism tempered by practicality, aimed at improving how well I function day to day.
It’s part of the bargain I’m negotiating between my autism and my ADHD.
MY ADHD: More in case we lose them! MY AUTISM: OK but only five. Seriously. And there are rules.
This post comes in response to @mightbeautistic on Twitter. They’ve got me thinking about the eternal battle between minimalism and maximalism (let’s pretend that’s a word) at our house.
Any Autists find minimalism helps with executive functioning issues?
I’m the type of #Autistic (also AuDHD) that has five chapsticks because I figure if I have more than one then I’ll be able to find it when I need it, but often can’t. #AskingAutistics
My husband and I have been organizing our house room by room lately and it’s an exercise in accommodation for 2 ADHDers, one of whom is autistic.
We are trying to balance several principals… or what I’m gonna pompously call principles because I can’t think of something less pompous to call them.
1) things with like things
All lightbulbs together… Jars Candles and holders Cat supplies Glassware Cookware Medicine Tools Art supplies Beauty supplies Etc.
2) keep things near where they’re used
Candles where we can find them in the dark Cat supplies near the cat feeding station Chapsticks, scissors, pens, hair ties, power cords, etc. at every desk Floss and a back scratcher in every room*
*because I’m autistic and these are frequently among my last defenses against a meltdown
Backstock/less frequently used stuff lives nearby but out of sight.
3) point of performance stations (thanks @HowtoADHD!)
All supplies for frequent tasks where we perform the task
Pet Care Station: Cat brush, nail clippers, and treats in a box next to the couch in my office
Morning Station: Toaster, butter dish, Kind bars, and coffee supplies next to the espresso machine near the sink (this idea came directly from Jessica McCabe at @HowtoADHD)
Food Prep Station: Knives and cutting boards and paper towels
Repair Station: Table I can clear with good lighting and a nearby box of common tools
The Nerdery: Miniature-painting and kit-bashing supplies in a desk cabinet near where finished miniatures are displayed in glass-front cabinets (Because the desk closes to become an attractive wooden furniture-of-unknown-purpose, we can paint minis in the living room and the fiddly bits associated with the hobby are easily protected from cats that collect small objects (we have 2) and from the focus of guests.)
Etc.
(I’m kind of weirdly proud of how 1 and 2 above come together in our way to deal with small appliances, which we divided into 3 groups in 3 locations: the three we use every day live on the kitchen counter, the four or so we use more than once a year live in the well-lit front row of the cabinet below, and the ones we almost never use but can’t part with cowering in the cavernous darkness of the back of that cabinet. I look forward to never having to move the juicer to get to the deep fryer or the ice cream maker ever again. Because priorities.)
4) corral things in vessels
Spatulas in a canister
Cat toys in a small bin
Each desk has a basket for little things
Bowl for keys and glasses by the door
Coffee supplies in a basket
Soap and sponges in a bowl
Shelves, drawers of stuff in boxes of like things
Etc.
5) if you can’t see it, you’ll forget it exists
More reason to store things in small boxes without lids in drawers and on shelves
6) minimize “thing blindness” by reducing clutter via empty surfaces
Both of us ignore visual distraction in order to be able to function. This leads to drifts of objects on surfaces that we eventually stop seeing. We do better if we don’t ALLOW things to accumulate on surfaces, at least not without something to corral them.
Hence “task stations” on countertops and objects corralled in vessels.
7) “We don’t need two roasting pans!”
Sometimes the carrying cost of objects is more than the value of the object. Keep the best one and maybe a backup, donate or recycle extras. (This is as close as we get to the Kondo method at our house.)
Electric pianos, copies of Gray’s Anatomy (the book), realistic dildos, punch bowls. You get the picture.
8) if it’s out, it should be useful or beautiful
Hence my vast collection of plain or beautiful boxes for storing ugly things that need to be at hand.
9) And finally, to please the autistic (me) with a materials fetish… fuck plastic.
Privilege helps here, because wood, metal, glass, stone, and rattan are expensive. For us, with a small amount of disposable income available to solve persistent problems, me not melting down from overwhelm over too many unwanted objects with irritating textures/colors is worth expense. We do our best to save money via a lot of thrifting and we happily take advantage of the availability of awesome objects our friends want to get rid of when those objects fit my autistic specifications.
(Also, my autism is pleased that this list ends on 9, one of my top three favorite numbers.)
All of this comes together as part of our larger Grail quest of meltdown-reduction, healthy stimming encouragement, and executive function support.
And it can happen for us now thanks to appropriate medication support for #adhd. #Adderall
Of course, in addition to the executive function boost from meds, all of this is happening now because of our ADHD dependence on the urgency of deadlines. In our case it’s not because we’re about to have guests, but something larger: age and advancing disability. We are getting to the age when we don’t have excess energy or tolerance for pain, and the drains on energy and the pains we experience are more profound. At our age (both of us are 56), we just can’t afford to miss too many doses of a medication, break something tripping on a rug, spend preventable time in the hospital, or lose time and energy trying to locate something important.
We will fail, and that’s important to acknowledge. We will fail to maintain a system. We will still lose shit. We will suddenly notice drifts of visual chaos that we’ve allowed to accumulate. We will fail to balance all those competing principles above all the time.
And so we move forward knowing that failure will happen… or perhaps we can manage to reframe it as a perpetual work in progress, an agile build, an adaptive phased approach. I do that kind of shit all the time at work.
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.
And before anyone says a self-diagnosis of ADHD or Autism might mean disregarding a more accurate diagnosis of something else…
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.
For instance…
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.
Similarly…
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.
An example. What I used to call panic attacks were more accurately autistic meltdowns. When I thought it was panic I thought it was my body/brain telling me I was afraid. Yet I failed again and again to think or breathe or exercise my way to not being afraid. Now that I know those were meltdowns, I see that of course fear-calming techniques wouldn’t help.y brain’s desired outcome wasn’t reassurance or help; it was space I needed. What I felt wasn’t fear; it was overwhelm. The better approach would have been to stim and remove as much input as I can. That’s what I do now, and my meltdowns are shorter, do less damage in my relationships, and leave me feeling pretty okay.
Knowing that someone has different neurology can have a strong impact on how you diagnose /and/ treat 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 (from many articles full of big words I’ll struggle to spell) that brains are different depending on whether the cause is ADHD (known structural differences), autism (AFAIK less clear 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
OR
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 among 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 my 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.
Plus, note to self, THC rules for stopping autonomic nervous system crap.
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) September 3, 2022
(It’s true. 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.
Sunday
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.
I took the Adderall. Now waiting for my new personality to emerge.
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) September 4, 2022
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.
An hour into Adderall therapy and I still can’t be arsed to comb anything. I did, however, erase the chin hairs. I’m not a slob. (LATER: Oops. Some of the chin hairs.)
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.
Oh! Oh! I know from women's magazines and diet culture that "forgetting to eat" IS in fact a personality!
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) September 4, 2022
Someday I need to write about how my teenage autistic brain created this whole weird narrative around ideal femininity based entirely on mixed messages from women’s magazines.
9:37a Making myself eat.
37 minutes since you reminded me to eat and nope, I haven't eaten.
Resisting the very present idea that food isn't really necessary.
Okay, breakfast cheese. Jump into my mouth.
— Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) September 4, 2022
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.
Inside every woman is two wolves. One wolf want long gorgeous mermaid hair. The second wolf wants to just chop it all off. There is also a crow pulling the tails of both wolves saying to get bangs. The crow is the most dangerous.
No, Adderall. You’re wrong about getting bangs. My papa specifically warned me about the dangers of amphetamines and DIY hair projects.
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?
BRB.
[Jeopardy music]
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.
So. Onward!
PS: Dry mouth is definitely a thing. So is forgetting to eat. And forgetting to smoke!
And gas.
Monday
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.
CRACKMEATJUICE 