Category: late-diagnosed

The Black Box and the Clunky Stack (on asking for help at work)

November 9th, 2022
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.
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I see you, rules. Let’s play.

October 13th, 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.

If you choose it, then it’s more likely that you can choose to walk away from it.
~ bell hooks in conversation with Jill Soloway

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.

Originally tweeted by Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) on October 13, 2022.
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The Misdiagnosis Scenario I Worry About

September 8th, 2022
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…
— The Tweedy Mutant (@the_tweedy) September 5, 2022

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. 😁

#ActuallyAutistic #ADHD

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.

#ActuallyAutistic #ADHD

Originally tweeted by Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) on September 6, 2022.
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Autism wins.

September 4th, 2022
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.

Lesson. Learned.
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New and improved me

September 4th, 2022
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 feel about 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.

#ADHD pic.twitter.com/rqQQ6Z9HCB
— No Nonsense Neurodivergent (@NoNonsenseND) September 1, 2022

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.
— Ellie Devine (@LastGorgon) September 3, 2022

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.
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Well. I blew that.

September 3rd, 2022
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.

Fucking hell.

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.

Like.

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.
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The Darkness

August 16th, 2022

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.

I’m masking RIGHT NOW.

August 5th, 2022
Here’s a thing to know: this blog is a mask.

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.
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A kiln or a crucible?

August 4th, 2022
Yesterday I wrote about what’s working for me as I recover from a case of autistic burnout.

Today offered an opportunity to reflect on what’s not working.

A quick list of things that still trip me up:
- Setting boundaries with neurotypical people
- Boundaries where it’s not safe to say I’m autistic (work, doctors)
- Back to back meetings
- Switching from many small fast tasks to one big focused task
- Weighing my needs against the needs of the team I manage (I fear I’ll struggle with this forever)
- When work makes it hard to pay attention to my body’s signals (like having to pee or being hungry or cold)
- Disturbed sleep
- Being able to avert a meltdown early in work situations, sometimes. (That failed today. I tried to bug out of a situation but the person I was working with failed to recognize my urgency.)
The good news here is that I’m getting more confident about being able to reduce the number of meltdown triggers I have. I just have to give myself permission to tackle them one at a time.

And I need to more consistently remind myself that failing in any given moment isn’t a failure everywhere all the time.

So yeah I melted down today. Only one person saw it happen and I trust her to be kind.

Now I’m stimming and trying to cool off my brain so I can try again.

I’ll be okay. Every meltdown erodes progress, sure, but there are also opportunities to analyze and learn and prevent the next one.

Meltdowns are not brushfires. They don’t destroy anything permanently. Not are they kilns that harden and strengthen. They are crucibles. They burn away shit I don’t need, leaving behind the truth about where to focus next on my path to feeling better (and mixing metaphors).
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On Burnout: Fighting Fire with Nothing

August 3rd, 2022
CW: Brief mention of suicidal ideation, job-related stress, aging

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

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

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

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

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

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

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

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

If I didn’t I risked:
- Blowing the newly-boosted but still-limping confidence I’ve accumulated since recognizing that I’m neurodivergent and not just a weirdo who fails a lot
- Failing (or even just breaking down) at work during a very high traffic, high pressure time
- Losing my performance bonus (I count on that money – it’s not “extra”, it’s a sizeable chunk of my compensation)
- Losing my job and having to find a new one right away
- Losing my health insurance at 56 with a growing stack of major healthcare needs for myself and my partner
- Losing many of the things that form a barrier between me and suicide
- Worrying my already chronically worried cats
As an acquaintance in the online autism community said about their own currently-emerging burnout, “…[M]y life as I know it will end. Not suicidally or anything, just, I can’t rebuild from scratch again.” Yeah. Me, too. The stakes are high, our margins are thin, and taking a break to recover from burnout can be very, very disruptive to the stability many of us on the autism spectrum crave. Not to mention expensive as fuck, and I haven’t recovered financially yet from the last time I burned out 3 years ago.

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

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

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

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

Nothing is my friend. Things are my enemies.

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

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

What am I trying?

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

Turn Down Every Invitation

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

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

Pay Attention to As Little As Possible

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

Stop Trying to Optimize Everything

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

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

Perfection can wait.

Decline Decision-Making

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

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

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

Samefoods, Sameclothes, and Samecontent

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

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

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

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

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

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

Set a Very Low Bar

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

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

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

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

Soothe My Senses First

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

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

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

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

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

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

And I stim every time I get the urge.

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

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

It’s fast.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some Results!

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

And it’s showing results.

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

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

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

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

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

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

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