Sobbing breakdowns, or the narrow averting of them, aren’t just something that happens on a bad day. This is one of the things I’m not sure people understand about the autistic brain.

Today at my nonprofit project, since the weather was nice and we had enough people on hand, we had our first visiting hours since relocating in late December. The first public visitors, in fact, that the goats have had for two months or so, since we’d closed up shop before the move in order to focus our weekends on doing the necessary work.

We spent the morning filling in what we think are old, sunken-in gopher holes to rid the field of trip hazards, and afterward, while some volunteers worked on finishing the smaller of the two shelters, I spent most of the day staffing the gate, greeting people, letting them know they could come in, and doing some version of my rules patter.

Over the course of four hours or so, we had a steady stream of visitors, but not too many at any one time, and there were no hassles to deal with or warnings to give out. Everyone behaved themselves, enjoyed themselves, and everything about the day went smoothly.

Nonetheless, on the way back home, just a few minutes into having stopped to run a grocery errand, I had something of an executive functioning crash and found myself toward the back of the store, unable to make a decision about which way to move, or what I needed to do next. It didn’t last long, but it happened, and when that happens in public it’s at least a tiny bit terrifying.

By the time I actually made it home, while the sobbing breakdown didn’t come, I could feel it, hovering around the edges. I guess considering its options?

An outside observer would look at the day, look at how it went, see the crisp, sunny winter day, the work getting done without struggle or strife, the people enjoying getting to visit inside with the goats, and probably not understand getting to the end and having one’s brain seize up, and one’s emotional state threaten to crumble.

But that’s what the autistic brain is like. Not all the time. Not every day. But, yes, even on some of the good days. Even with a routine script of sorts that you use when having to be socially performative with people, even if you’re talking to them about something that means something to you personally, all those moments, together with the finishing up the backfill around the yard hydrant and carting buckets of dirt around, they can be too much.

Even when no single part of it all, nor even the entire thing taken as a whole, is, per se, “bad”.

You can maybe start to see why I’m still in a year-long autistic burnout that flared up when I tried to go back to steady, daily paid employment last year. Why I’ve not yet tried again. Why I’m flailing impotently at Social Security to give me something to hold onto while I try to find out if I even can.

Yes, today was a good day. But the way my brain is wired doesn’t always care about good or bad. Sometimes it just cares about impact.

But imagine what the bad days are like.

Out this week is a new study published in Autism: The International Journal of Research & Practice, which, according to the press release, “demonstrates that there is an urgent need for tailored treatment pathways in mental health services for autistic people”. The group’s research, conducted in the United Kingdom, was “designed in partnership with autistic people, has strong implications for services, and [the] need for an autism specific mental health pathway”.

Reasons for this lack of treatment and support are complex. Mental health professionals and psychiatrists are generally not trained in recognising and understanding autism, meaning services are unprepared to adapt support and treatment to this group. There are also a lack of appropriate assessments to effectively identify mental health problems such as depression and suicidal feelings in autistic adults and a lack of appropriate adapted psychological therapies for autistic people.

Emphasis added because, well, I literally was talking about this just the other day after I dropped my new therapist.

There’s a difference, however, between, “Therapy can be hard.” and “The socially performative nature of therapy can be especially stressful for people whose condition can be in large degree about social communication and performance distress.” If a therapist doesn’t see this, I don’t know what they are doing.

While I’m not a fan of the use of “low” and “high” functioning labels (since these can change over the course of any given autistic person’s life, and can be different for any given person depending on the situation or task, and one can be “low” in some areas and “high” in others), among the things participants highlighted are that if you’re viewed as “high functioning”, or if you don’t have an intellectual disability in the mix, you’re less likely to be seen as needing any real kind of support.

Participants described how their need for support was dismissed due to non-autistic people’s (mis)perceptions of ‘high-functioning’ ASC (26 participants). Specifically, autistic people were viewed as ‘coping’ (474F), ‘functioning’ (56F) or ‘managing’ (28F) even when they were not because they were too ‘high-functioning’, independent, in employment or at University, which resulted in them being excluded from relevant treatment and support.

But back to the bit I emphasized because I’d just been talking about it here: “a lack of appropriate adapted psychological therapies for autistic people”.

Many participants felt a need for professionals to be better trained in autism to ‘realise it may not always be possible to accurately read a person with autism’ (120F). Participants felt that this up-skilling of autism knowledge was not their responsibility: ‘some of them have asked to borrow books from me about autism or asked me to teach them about it and I feel that shouldn’t be down to me’ (181F). These experiences suggest that professionals were often ‘well-meaning’ (176M) but lacked knowledge of the different way in which autistic people communicate and socially interact, and the implications for their treatment and support.

Emphasis added because this is what I was getting at. If the therapeutic process is structured from the same building blocks that create distress for my autistic brain in the outside non-autistic world in general, isn’t that a flaw in the therapeutic process? Can anyone truly argue that the best way to support autistic people is through engagement methods that cause them the selfsame distress they encounter everywhere else? There must be models of therapy built for autistic brains.

(A recent report out of Scotland found similar concerns, and specifically recommended developing treatments with autistic people in mind: “The majority of approaches to mental health care and treatment are developed through testing on non-autistic patients.”)

The gaslighting represented by telling me that “therapy can be hard” (which is what my now-former therapist said to me) is little more than thinking that therapeutic methods designed for neurotypicals are the only route for the atypical. It’s just more insistence that we bend in order to participate in the world around us.

In yesterday’s post, I took a brief tangent to criticize Dialectical Behavior Therapy and how its emphasis on “mindfulness” and “distress tolerance” seemed not to understand the autistic experience (or, at least, my autistic experience). DBT is an offshoot of Cognitive Behavioral Therapy, and in this study a full 22 participants took issue with using it for autism.

I had communication issues with each therapist because they expected me to be neurotypical, so I would take things too literally and they thought it was a defense mechanism, or I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception. (4F)

When reading about DBT, its emphasis upon “reframing your thoughts”, part of its “mindfulness” methods, was one of the things that was rankling me, and the above study participant nicely sums up the problem: “I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception”.

My concerns when it comes to finding a therapist ultimately come down to the fact that I can’t work with someone who whether by intent or “just” by the nature of the psychotherapeutic method, is telling me that things somehow are my fault. That all I have to do, e.g., is to learn the coping skill of “reframing my thoughts”.

No, what I need to do is escape the environment causing me distress, and perhaps never return to it. Therapy should not be one of the environments that I need to flee in order to protect my own brain from distress.

The study might be about mental health services in the U.K. but I do believe that many of the same dynamics are at play when it comes to provision of government benefits in the U.S. such as those administered by Social Security. I don’t have an intellectual disability, so my autism can’t be all that debilitating. I’ve worked in the past, and so (despite that work history being full of what, had I had a diagnosis when I was 16 or 26 instead of not until 46, easily would have been deemed at the time to be Unsuccessful Work Attempts by Social Security standards) that must mean I can work now.

For most of my life the issue appeared to be that I was a failure and fuck-up who just didn’t know how to apply myself. My diagnosis proved instead that I was an autistic person without any support.

If only psychotherapeutic methods and government benefits agencies would come to accept the latter instead of still seeing me as the former.

When I wrote about trying to standardize some terminology when discussing my autism with my therapist (or, now, ex-therapist), I left out one experience because I couldn’t remember the word, and if I’d sat around wracking my brain for it I never would have written anything at all.

Before, I discussed overwhelm, shutdown, breakdown, meltdown, and burnout. What I’d forgotten was the word “overload”.

Overload, for me, is a unique state in which I am conscious of the growing cognitive and/or emotional load bearing down on my brain. It’s a circumstance in which there is plenty of room for the potential “beat” between innate reaction to stimuli and my outward response to that reaction. The most common version of this occurs during visiting hours at my nonprofit project should there be too much going on, too many tasks that need doing, and too many people onsite.

In such a circumstance, the answer frequently is just to walk away. This of course is easier during visiting hour shifts where I am not the only volunteer present (somehow we always end up with half a dozen people working Sundays while oftentimes it’s just me on Saturdays), but even on solo shifts there’s usually an opportune moment to be found in which I can distance myself from everyone and everything, at least briefly.

(I was doing some reading about Dialectical Behavioral Therapy and was a bit baffled by the “mindfulness” aspect. There are many situations in my experience of autism where there isn’t any time to be mindful. If I’m running out of spoons, for example, mindfulness won’t help. In those limited circumstances where “mindfulness” can help, e.g. during overload, I’m already aware of the opportunity to mitigate, and it certainly isn’t about “distress tolerance”, another aspect of DBT, but about getting away from the source of distress. This notion that it’s a person’s job to “tolerate pain” instead of getting away from the pain is bizarre, and isn’t limited to therapeutic approaches. It seems ingrained in society as a whole.)

Overload in some sense is the smaller, day-to-day, or week-to-week, version of burnout. While burnout, to me, is the build up over time of a kind of psychic plaque due to the (di)stresses of camouflaging, overload mostly happens during short bursts of socially performative activity that pushes both the masking button and the spoons button. It’s both energy- and environment-based.

It’s not entirely clear to me what determines going into overload (where I can “walk away”) versus falling into overwhelm (where I’m simply going to “shutdown”). I suspect in part it’s the degree of distress as well as its velocity. In some sense, my use of stimming to keep my body present when an overwhelm descends upon me could be considered an attempt to suspend me in more of an overload state until I can get home, or somewhere similarly safe enough in which to shutdown.

I’m not entirely sure this glossary reflects the ways in which other actually autistic people experience these states. As I’ve said before, these framings accurately reflect the way my experiences feel from the inside of them, which is all I can really do to try to make sense of what happens to me.

I once wrote, “I don’t seem to have the same degree of sensory issues as do other people writing about their autism.” I wrote this early on in my writing about being autistic and while I understand why I said it, and believed it, at the time, and while it’s true that I think I have fewer sensory issues than do many other autistics, it’s also true that I’ve since learned that it understates things a bit.

It turns out that bright lighting does bother me. It turns out that noise does bother me. It turns out that the hot sun does bother me. What also bothers me is that for four decades apparently I just assumed that was what living in the world was like, period. The world, apparently, simply hurt. I guess I simply assumed it hurt that way for everyone, and that it was just that no one talked about it, or was supposed to talk about it?

Today, post-diagnosis, I wear my mirrorshades pretty much everywhere I go. I wear my ear defenders on public transit, and in cafes that are crowded or playing music. I bought a cooling vest for when I have to host visiting hours at the goats during the summer heat.

I moved recently, from an apartment on a relatively well-traveled road (all my previous apartments were similarly situated) that had noisy neighbors to an apartment on a quieter residential street, set back behind the main house. I don’t think I understood it was possible to live this quietly until I realized that I had stopped taking the two ibuprofin I’d been taking every morning for years. (Yes, I know, bad idea; I’ve pretty much wrecked my stomach.) It turns out I was medicating myself every morning because the headaches that inevitably would come were the result of some very definitive sensory issues regarding sounds.

When I first went to therapy to be evaluated for potential autism, all of my answers to questions about sensory issues were that I didn’t have any. It was only the post-diagnosis freedom to self-examine (or, re-examine, I suppose) without suppositions and preconditions that led me to realize.

Which is a lot of what late diagnosis is about, I guess. Finding out that much of what hurt about your life (if you even consciously were aware of it) wasn’t just life as everyone knows it, but your brain suffering for years, or decades, and you simply not knowing it.

(How is this even possible, you, or the fine folks at Social Security, might ask? Society’s background radiation of conformity is powerful. You learn to suppress difference without it ever even entering your conscious mind. This is how people like me happen.)

Being diagnosed in midlife is a a bit like a kind of trauma, because it upends the story of how you got to be where and who you are, and the real story turns out to have a bunch of hurt in it that went unaddressed, unacknowledged, or, more likely, completely unnoticed.

But it also provides new reasons for the hurt you already knew had been there. Suddenly, it wasn’t that you’ve been a failure and a fuck-up, incapable of “applying yourself”. It’s that there no one ever told you that your brain needed a different toolkit for navigating a world that wasn’t made for it.

That’s not a magic wand. I still don’t have the toolkits I need, be they internal or external. Whether you subscribe to the medical or the social model of disability when it comes to autism, I am still disabled and without the supports I need to survive properly. I can work on the internals (although, apparently not right now), but the externals require authorities like the Social Security Administration to believe I’m disabled at all.

In fiction, “retroactive continuity” isn’t a lie. It’s a newly-revealed explanation for existing history. Being a late-diagnosed autistic means that while you still lived your life as you lived it, it wasn’t what you thought it was.

That’s tricky, and traumatic.

There’s no going back, only forward, but whether that forward leads up or down depends on a depressing number of other people making decisions about whether they believe the retcon, or are sticking with their head canon that I am not disabled.

Psychotherapy hates autism.

What I mean here is that the process of psychotherapy as generally understood and undertaken often seems itself to be a collection of stressors that only make me feel worse. Certainly, that’s been my most recent experience.

(Notwithstanding the “consultive exam” the Oregon Department of Human Services sent me to as part of Social Security’s disability determination process, I’ve never felt that any particular therapist was campaigning against my autism.)

In trying to break up with my therapist this week, she said exactly the wrong thing: “Therapy can be hard.”

Yes. I know that. Of course I fucking know that.

There’s a difference, however, between, “Therapy can be hard.” and, “The socially performative nature of therapy can be especially stressful for people whose condition can be in large degree about social communication and performance distress.” If a therapist doesn’t see this, I don’t know what they are doing.

For me, that statement—“Therapy can be hard.”—is at least a distant cousin to something else I encountered again recently.

Am I the only one who when I express to someone how this or that is difficult for me or hard on my brain, and that someone goes, “That happens to me too.”, you get kind of pissed off? Like, no, what I’m describing doesn’t happen to you.

It always reads to me like, “Oh, we all have hard days.” or, “Oh, we all get tired.” Yes, everyone does. But the way my days are hard, and why they are hard, and the way I get tired, and the why I get tired, are different. Stop negating that.

Sometimes I think, you know, you wouldn’t say to a person with emphysema, “I cough sometimes, too.”, but apparently it’s okay to assume your every day troubles, legit as they are, equate to my brain’s wiring, and, no, sorry, they don’t.

Sitting on display in an enclosed space engaged in a socially performative exchange with someone whose job is to interrogate you all while they make determined eye contact, this is not a process you’d imagine people wanting to help the Actually Autistic would devise were they trying to design a therapy process specifically for that population.

Surely psychology has room for the idea that the very form therapy takes should take into account the issues and impairments of the patient?

(I’m currently participating in a study of autistic burnout, and guess what? The researchers specifically allow for different communications methods and channels. I’m participating via email, even though the researchers are local.)

There are, of course, other approaches, including the minor explosion of “online therapy” services that range from video chat to messaging to email. Some of those are even covered by private insurance, but so far as I know none of them are covered by the Oregon Health Plan.

Laws like the Americans with Disabilities Act require businesses and service providers to accommodate disabilities, impairments, and differences. It would be nice if services like psychotherapy acted as if precisely the sorts of people those services are meant to help might have vastly different needs in terms of how they can engage successfully in the processes. It would make sense to me for in-person sessions to be part of most approaches to therapy, but for it to be the regular, primary form of engagement often feels like too big a hurdle.

There’s a difference between therapy that’s difficult but in the end rewarding and therapy that just leaves itself sitting atop the pile of other existentially-exhausting baggage one already is carrying around. Or, at least, there’s got to be a difference, right?

Discomfort is one thing, distress is another. I’m simply not willing to subject myself by choice to more distress than I am already under.

Even outside the high-pressure situation that is a therapy session, face-to-face conversation in real-time frequently requires too high an expense for too little a payoff. Monotropism makes clear that the sort of multitasking required for such engagement is a virtual impossibility. Like many autistics, I simply cannot simultaneously listen to the person talking to me, have thoughts about what they are saying, remember what they are saying, and have thoughts of my own that I want to bring up at some point during the conversation.

I defy anyone to say that’s a dynamic conducive to a productive, informative therapy session, let alone an ongoing therapeutic relationship.

Guess what works better? Email, where there’s a clear record of what’s said that can be returned to and looked back at. Messaging works, too. It might still technically be “real-time”, but less so than meeting in person, with more room for the autistic patient to understand what’s being said to them, and what they themselves want to say. Like email, there’s also a record, beyond the therapist’s notes and your own attempted memory.

Asynchronous beats synchronous, almost every time.

I need a therapist whose practice permits them to meet me halfway. I need to be able to do much of my therapy online instead of in-person, with in-person check-in sessions every now and then. I need to be able to ask a therapist to replace an upcoming session with them taking the time to read what I’ve been writing online about being autistic in the time since our last session.

Alternatively, I believe that therapists need to accept the idea of having homework. It’s not enough to do a spot review of earlier notes right before a session. I need someone who is going to prepare, ahead of time. They expect me to prepare, and while the patient-therapist dynamic of necessity is a somewhat imbalanced one, I do not believe it’s somehow a one-way street. I have months of writing about being autistic. I would like to believe that part of therapy is your therapist making sure to learn what’s come before them, but the way in which that happens simply cannot be me trapped in a room methodically reading aloud.

Right now, I am probably out of luck. After three sessions with my latest therapist I still feel like there’s just a huge communications gap that I am not convinced can be closed, and I can’t spend the next run of sessions just trying to fix that problem. That seems like a waste of everyone’s time. I know it feels like a waste of mine.

Maybe I should just go back to sitting zipped up in a winter coat. At this point, I feel like that would be just as effective.

I’ve always got at least one rewatch going amongst all the current television I follow, and these days it’s Star Trek: Deep Space Nine —still the best Trek series, and Benjamin Sisko is still the best commander/captain. It’s more relaxed than my typical rewatches in that I’m comfortable skipping an episode here and there (somewhere in season two there’s inexplicably two Quark episodes in a row?) something I’m usually loathe to do.

What I wasn’t prepared for this time around was discovering that Odo somehow manages to be an analogue of the #ActuallyAutistic. Tumblr agrees, of course. (There’s fanfic out there about Bashir being autistic, but, let’s face it, Julian really is just an asshole.)

Odo was a Changeling who served as chief of security aboard the space station Terok Nor, later known as Deep Space 9. He was the only known Changeling to reject the Founders’ beliefs and instead gained an appreciation for humanoid species. Despite being affiliated with several groups in that capacity, the Bajoran Militia, Cardassian Union, United Federation of Planets, and Dominion, he gained a widespread and respected reputation from all these groups for being a fair enforcer of the rule of law.

It’s established early on that Odo can’t quite manage to take fully-human form, something that’s represented by his inability to complete a human-looking face. His is stiffer, his expressions a sort of self-conscious mimickry of human. This is something some autistic people discuss a lot, and while not universal it’s sometimes referred to as having a “flat affect”.

That “widespread and respected reputation … for being a fair enforcer of the rule of law”? Autistics have a reputation (of mixed valuation) for having a fairly firm conception of right and wrong. I suppose it’s likely linked to the “rigidity” many of us experience. Odo is deeply suspicious of attempts to subvert the rules, as are many autistics, and he seems equally reluctant to accept “ambiguity [or] behavior when he does not clearly see and agree with the method and purpose of the tasks and general direction of the activities” (to quote from my own psychodiagnostic evaluation).

There’s an episode in season three in which, in order to get rid a man who had been hitting on her the night before, Kira pretends Odo is her lover, a charade that he takes more literally than her ruse intended. While again not being true for all autistic people, a tendency to take statements a bit too literally in a common observation.

The big one for me is that Odo’s true form is a shapeless and gelatinous liquid. He can’t maintain human form (or, technically, any foreign form) for more than sixteen hours at a time, at which point he must resume his true shapelessness in order to regenerate.

Odo could not hold a form permanently, and had to regenerate on a regular basis, generally every sixteen hours. During this time, he returned to his natural state for a period of several hours. Nevertheless, in 2369, while trapped in a turbolift for several hours, Odo showed signs of distress when approaching the fifteenth hour mark since the time of his last regeneration; physical changes in his appearance were already beginning to show. (DS9: “The Forsaken”) Several years later, while bunk mates with Quark during a mission on the Defiant, Odo appeared fine physically, even if highly agitated, when – interrupting multiple attempts Quark made to engage in conversation – Odo explained he had been holding his shape for a full sixteen hours. (DS9: “The Search, Part I”) In one case, Garak tortured Odo by preventing him from regenerating, using an Obsidian Order device that prevented Changelings from changing form. The inability to regenerate appeared to cause Odo great distress and pain, as well as causing his physical appearance to begin to fall apart. (DS9: “The Die is Cast”)

This is really sort of remarkable. Odo in a very real sense is spending sixteen hours of every day camouflaging his true nature and self. As he approaches the tail end of that period, he shows signs of “distress”, and if prevented from regenerating he experiences not just distress but “pain”. Ask your favorite autistic Star Trek fan is this ever struck them. I can’t imagine I’m the first ever to notice.

After his encounter with the Founders, Odo stopped using the bucket and got himself assigned to personal quarters; he would instead revert to his gelatinous state and shapeshift freely throughout the room, allowing himself to spread across the floor when he needed to become gelatinous. Odo kept the bucket with him “as a reminder of how [he] used to be.”

After discovering that not only was he not the only one like himself but that there was an entire community of beings like him, Odo decides that his regeneration time should more truly reflect his real self. In effect, even regenerating in a bucket was a denial of who he truly was, a sort of socially-acceptable version of what he truly needed to recharge himself physically and psychologically.

In the end, Odo returns to his people to join The Great Link, which really is just all the various individual shapeless, gelatinous liquid people mixed together in an ocean of each other. It’s vaguely as if an autistic person up and joined an autistic commune because the world outside wouldn’t let up on the insistence that they camouflage all the time.

The parallels fall apart, of course. Nothing is exactly like something else all the time, despite Odo trying to do exactly that for most of his day.

When he first encounters his own people, he’s left alone at one point in what his people’s leader calls an arboretum, but Odo doesn’t understand that the point of the place is to change into each of the different forms on display in order to understand them better. In this conception of his people, it’s camouflaging as exploration, as discovery, as a kind of joy, even. Being something else for awhile is considered as much a kind of freeing experience as is returning to your true form.

That’s not the autistic experience, of course, where camouflaging instead is a kind of self-inflicted, if world-mandated, violence. In the real world, we need less of it, not more.

Still, be it intent or accident, the Odo-as-autistic metaphor is there. My rewatch just hit season three and I’m curious now to discover if any other parallels exist. Rest assured, I’ll be watching from the safety of my bucket.*

*Apartment.

I just rediscovered the study ”‘Putting on My Best Normal’: Social Camouflaging in Adults with Autism Spectrum Conditions” in an app that lets you highlight on the web. I do not appear to have highlighted the entire thing, but it seems a close call. Here are some of the passages that really are popping out at me right now.

Camouflaging is likely to exist on a spectrum (similar to autistic traits) in those who have an ASC diagnosis and those who are subclinical. However, self-reported evidence suggests possible categorical differences between autistic and non-autistic camouflaging. For instance, camouflaging by ASC individuals has been reported as extremely effortful and challenging to one’s identity (Bargiela et al. 2016), unlike ordinary reputation management in typically developing individuals.

This is an important bit, and it reminds me of how I rankle when someone responds to me mentioning that I’m autistic by saying something along the lines of, “Well, it’s a spectrum, we’re all a little bit autistic.”

No, you aren’t. (Well, maybe you are, but that’s not what you’re saying when you say that.) Autistic camouflaging is not the same as the various masks and performances that people wear and engage in just to get through the realities of living in a world with billions of other people, all with their own inner lives and outer commotions. I can’t speak to whether or not any of the same psychological processes are involved, but autistic camouflaging, as opposed to “ordinary reputation management” is a kind of self-harm. It’s a kind of psychic violence.

What neurotypicals do on a day to day basis is like holding your breath underwater. What autistics do can be more like drowning while gasping for air. I’d agree, were it suggested, that much of neurotypical “reputation management” is superfluous and unnecessary. I just wouldn’t say it’s the same.

Camouflaging in certain settings may lead to the perception that individuals function well and do not experience any problems, even though those individuals still experience difficulties as a result of the interaction of their ASC and the context.

This is a huge one. Huge. It’s definitely a problem for the late-diagnosed, since years, decades, or a lifetime spent camouflaging in varying degrees and ways in varying contexts looks a lot to some medical, mental health, and social services professionals as evidence against a diagnosis.

Individuals with ASC also display significant variation in their outcomes across the lifespan, especially concerning their social functioning.

So it’s not just about the late-diagnosed, because even the early-diagnosed can find that the severity of difficulties interfacing the world around them can ebb and flow. It’s very easy for some people to take this as proof that we exaggerate the bad times, or argue that since we can have comparatively good periods we must not be trying hard enough in those other times.

(For me, this is going to be an issue when it comes to employment and/or disability benefits. The fact that sometimes in my life I’ve managed to work, say, six months instead of one—or two years because the job involved friends of mine and so a lot of the social and performance pressures I felt but didn’t know were autism were circumstantially mitigated—doesn’t necessarily mean I will ever again be able to work for more than six months, or even one, at a time. The entire process of Social Security benefits for the late-diagnosed autistic does not take this into account in any way whatsoever.)

Camouflaging was partly performed through suppressing, hiding, or otherwise controlling behaviours associated with ASC that were seen as inappropriate in the situation. The extent to which this happened could vary depending on who the person was with; camouflaging tended to occur less often with close friends and family members, although some respondents described camouflaging at all times.

In some ways this goes back to what I’ve said before about having had some social circles in my past where atypical or “quirky” behaviors and attitudes were more generally accepted, or at least endured, than is the case in the general population. Much like I’ve had two jobs that lasted around two years because friends recruited me and unknowingly lessened the social and performance pressures I feel, these social circles provided similar accommodations.

Respondents described attempting to minimise their self-soothing or ‘stimming’ behaviours, and their responses to sensory overstimulation, in order to make their condition less obvious to others. These techniques included using objects as ‘props’ to meet sensory needs in a subtle way, and giving themselves regular excuses to leave overstimulating environments and calm down.

Which fits nicely with my hindsight supposition that my two decades of smoking in fact functioned to mask any stimming behaviors I might otherwise have been engaged in during those years. Zippo lighters as the original fidget spinners? Gesturing with one’s cigarette in lieu of hand-flapping? (I don’t actually flap, but I do have other hand- and finger-oriented stims.)

However, it is important to emphasise that not all respondents developed such structured rules for conversation; some simply had the goal of speaking as little as possible in order to get out of the interaction quickly.

This, too, echoes things I’ve touched on before: my one-time use of a toolkit for introverts to manage aspects of what in fact was autism, and my recent realization that, especially in close-quarters with any figure possessed of some fashion of authority over me, I frequently will acquiesce and defer to their opinion of what I should do, just in order to “get out of the interaction quickly”—even if it means I’ve agreed to something that I know will be worse off for me in the longer term.

By far the most consistent consequence of camouflaging described by respondents was exhaustion. Camouflaging was frequently described as being mentally, physically, and emotionally draining; requiring intensive concentration, self-control, and management of discomfort. The longer a camouflaging session continued, the harder it became to maintain the intended level of camouflaging. Many respondents reported needing time to recover after camouflaging, where they could be alone and release all of the behaviours they had been suppressing.

Here is where, technically, we get the the matter of burnout. Imagine an early-diagnosed autistic person who is never given any true opportunities to be out in the world uncamouflaged, or a late-diagnosed autistic person who, subject to the society’s general background radiation of conformity, never even knew there was a “secret self” being trapped inside. If “the most consistent consequence of camouflaging described by respondents [is] exhaustion”, what happens if you’ve had to camouflage for most of your life?

Autistic burnout. (The real stuff, not the millennial branding opportunity.)

The situations in which respondents camouflaged were so extensive for some, they felt that they were losing sense of who they truly were. Respondents often felt they were playing so many different roles, it was hard to keep track of their authentic sense of identity. This increased the anxiety and stress associated with camouflaging, as individuals lost a sense of grounding and security in who they were.

I can’t speak to this dynamic in an early-diagnosed autistic and what camouflaging is like for them. I can say, as a late-diagnosed autistic, that there’s an intense period of both a real identity crisis and a kind of imposter syndrome, as the diagnosis throws your entire past life into psychic disarray. What parts of my life back then were really me? What parts of my life right now are really me? This crisis is exacerbated during times of seeking benefits or services, since the lateness of diagnosis effectively masks your lifetime of unmet support needs, and thereby presents you as not suffering a sufficient degree of impairment.

In the short term, camouflaging results in extreme exhaustion and anxiety; although the aims of camouflaging are often achieved, in the long-term there are also severe negative consequences affecting individuals’ mental health, self-perception, and access to support.

This does sum up the problem, and it’s important to underscore that “the aims of camouflaging” typically (no pun) are to assuage or avoid the discomfort of neurotypical society. When neurotypical social performances are no longer demanded, whither the exhaustion and anxiety of the actually autistic?

If there is one new-to-me thing about autism that I want everyone to consider, it is monotropism. If there are six things that I want everyone to know about monotropism, they are these six things from Fergus Murray.

  1. Coping with multiple channels is hard
    This can be sensory channels or other information streams.
  2. Filtering is tricky and error-prone
    Sometimes I can’t tune things out, other times I filter them out completely.
  3. Changing tracks is destabilising
    Task-switching is hard, and new plans take work.
  4. I often experience things intensely
    Usually things that relate to my concerns and interests.
  5. I keep looping back to my interests and concerns
    It’s hard to let things drop.
  6. Other things that drop out of my awareness tend to stay dropped
    I may need reminders.

There should be a wallet-sized card of these six things for neurotypicals who interact with autistics to carry around with them.

These six things are not useful just when thinking about autism writ large. In some way, every single one of them likely factors into any conversation you’ll ever have with me, whether you can see them happening or not.

So, okay, great. Now when actually autistic people try to talk about autistic burnout, we will be dismissed as trying to hop onto a millennial brandwagon. All because BuzzFeed decided that millennials are “the burnout generation”.

But the more I tried to figure out my errand paralysis, the more the actual parameters of burnout began to reveal themselves. Burnout and the behaviors and weight that accompany it aren’t, in fact, something we can cure by going on vacation. It’s not limited to workers in acutely high-stress environments. And it’s not a temporary affliction: It’s the millennial condition. It’s our base temperature. It’s our background music. It’s the way things are. It’s our lives.

Emphasis added because what a truly galling sentence.

In fact, I wholeheartedly do believe that society is structured in a smothering way for most people (moreso if you aren’t straight, white, and male like I am), even if also structured to favor the neurotypical. This article, though, while critiquing a millennial orientation toward “branding” one’s life, literally tries to turn “burnout” into just another millennial brand.

But social media is also the means through which many “knowledge workers” — that is, workers who handle, process, or make meaning of information — market and brand themselves. Journalists use Twitter to learn about other stories, but they also use it to develop a personal brand and following that can be leveraged; people use LinkedIn not just for résumés and networking, but to post articles that attest to their personality (their brand!) as a manager or entrepreneur. Millennials aren’t the only ones who do this, but we’re the ones who perfected and thus set the standards for those who do.

“Branding” is a fitting word for this work, as it underlines what the millennial self becomes: a product.

This is a kind of life garbage the article itself generates while critiquing. There’s so much branding in here. “Errand paralysis”? “Decision fatigue”? For the actually autistic out here, this is called an executive function problem, and it’s a very real and excruciating thing, not a hashtag. It hurts.

Other tasks are, well, boring. I’ve done them too many times. The payoff from completing them is too small. Boredom with the monotony of labor is usually associated with physical and/or assembly line jobs, but it’s widespread among “knowledge workers.”

This is not burnout. Finding an every day task “boring” is not burnout. I mostly avoid the generational stereotyping, but this right here is why millennials have a (let’s presume inaccurate) reputation for being entitled. This is someone feeling entitled to brand themselves as suffering from burnout because they find mundane tasks “boring”.

No.

Pundits spend a lot of time saying “This is not normal,” but the only way for us to survive, day to day, is to normalize the events, the threats, the barrage of information, the costs, the expectations of us. Burnout isn’t a place to visit and come back from; it’s our permanent residence.

Emphasis added because that last sentence—and I mean this very, very seriously—is dangerous. Right now, at this very moment, there’s a study happening about autistic burnout (in which I am a participant), and potentially about its correlation to the rate of suicide or suicidal ideation among the autistic.

But don’t worry: BuzzFeed is here to let you know that burnout really is about millennials finding life “boring”.

According to the year-end wrap-up provided by Goodreads, in 2018 I read 12,290 pages across 37 books (I had a reading challenge goal of 35), from the 93 pages of The Only Harmless Great Thing by Brooke Bolander to the 598 pages of The Friendly Orange Glow by Brian Dear.

The former, about sentient elephants, led me to keep an eye out for new stuff from Bolander, while the latter, about a computer network you’ve likely never heard of, would make a pretty terrific television show in the vein of the great Halt and Catch Fire and even if you’ve never before heard of PLATO there are stories in there that will feel familiar to anyone who experienced any version of early computer internetworking.

I started the year with Autonomous by Annalee Newitz and ended the year with Rosewater by Tade Thompson, although technically I ended the year still in the middle of reading This Is the Way the World Ends by Jeff Nesbit and Treason of Hawks by Lila Bowen, which will be the first books I finish in 2019.

Goodreads tells me that the most popular book I read last year—actually a re-read after watching the terrible movie “adaptation”—was Annihilation by Jeff VanderMeer (131,858 readers) and the least popular book I read was Latchkey by Nicole Kornher-Stace (154 readers) which is too bad because the Archivist Wasp duology is pretty great and you should read them. You should read the Southern Reach trilogy, too, but looking at those numbers you probably have already.

So You Want to Talk About Race by Ijeoma Oluo was the highest-rated of all the books I read last year, and that’s deserved. She does a pretty good job, one she’s not really required to do, of not overtly shaming white people for being born into a society whose background radiation of white supremacy can’t help but, well, irradiate us. The shame only comes if we don’t admit it and address it, and listen to those impacted by it.

I did also later in the year read White Fragility by Robin DiAngelo as a sort of companion piece to the above. If you have to choose one, choose Oluo’s book even though she’s mentioned on Twitter that had DiAngelo’s book come out first she’d have referenced it in hers. The History of White People by Nell Irvin Painter is a useful backgrounder.

The Night Masquerade by Nnedi Okorafor was a given because at this point when she has a new book out, I’m going to read it. In some sense, although they are completely different, reading her version of Nigeria in her Akata Witch series is what led me to Tade Thompson’s, as when I find even the slightest angle into finding authors who are not, like me, straight, white, middle-aged, and male, I’m trying to take advantage of it.

I don’t want to go down the rabbit hole of what I read that you shouldn’t, but I will offer up a short list of some of the other books that you should.

Not that there’s nothing else on my 2018 read list that is worth reading. I just wanted to highlight some of the books out there that maybe you haven’t noticed. Everyone was reading White Tears by Hari Kunzru and Exit West by Mohsin Hamid and American War by Omar El Akkad so they don’t really need my attention here (although I will say that of the three, I lean toward Exit West).

In fiction, I’d say go for Autonomous, Amatka, Blackfish City, and An Unkindness of Ghosts, but The Only Harmless Great Thing is a good, quick read. I’d say you should read Latchkey but actually you have to go back and read Archivist Wasp first.

In non-fiction, try The Friendly Orange Glow and So You Want to Talk About Race, although both Built by Roma Agrawal and Pit Bull by Bronwen Dickey are diverting if uneven.

.   .   .

Want to help me make my 2019 reading challenge goal of another 35 books? Hit up my Amazon wishlist of Kindle editions. Can’t even afford to keep yourself in Kindle books? Find out if your library is part of Overdrive, like mine is. I couldn’t make my reading challenge goals without it.

After two weeks of not being entirely clear why I was seeing a psychoconsultant again beyond the idea that it’s what I’m “supposed” to be doing, today we did something of a pivot after my thoughts about being nitroglycerin and my attempt to define and distinguish reactions from responses.

For two weeks in a row now, I have left my psychoconsults feeling like it was being argued that how things affect me is my fault. While I don’t actually believe this is what my psychoconsultant was arguing, for whatever communications breakdown reason it’s how things have been coming across.

So we are going to have to come to terms, literally, in that we need to be using the same language to describe things. For me, it’s a matter of stimuli, reaction, and response.

One problem with today’s conversation is that monotropism and its restrictions on multitasking mean that even under normal and comparatively relaxed conditions, I cannot simultaneously listen to the person talking to me, think about what they are saying, have my own thoughts on the matter, and hold onto those thoughts for when it’s my turn to speak. That makes it difficult to guarantee that I and the other person actually are talking about the same things. (Toss in my tendency to be deferential to the other person if it’s a close-quarters, high-pressure, me-on-display, one-on-one conversation, and miscommunication practically is a sure thing.)

I’m thoroughly a layman, so it’s unclear to me how on the one hand the researchers state that no real links were found “between measures of cognitive function and sustained connectivity” and yet also suggest that their results might be consistent with “another hypothesized physiological mechanism in autism, that of decreased ability for shifting of attention” in autistics, since I would think that one aspect of cognitive functioning in fact is the ability to shift from the attentional tunnels discussed under monotropism, but mostly I am just sort of astonished that one the same day I learned about monotropism I also ran across an fMRI study that seems to support it, at least in part.

So, I am not entirely sure, even with what progress was made today, that terms necessarily were getting defined in a common way.

Last week here, I tried to nail down the difference between what I consider to be the innate reactions of my autistic brain to stimuli and the responses I might have to those reactions, and as well to nail down the idea that sometimes there is a “beat” between the two that might be taken advantage of to steer some responses (although, necessarily, this means there also sometimes either isn’t such a beat, or it’s impossible to notice it, because of the sheer numbers of stressors happening at once).

This week it’s got to be about defining some terms. A sort of autistic glossary, because I think some things have been getting confused and conflated. I should note that I don’t think there’s even any particular consensus among actual autistic people about what words mean what. All I can do here is use the terms that most suit and reflect my own experiences, and how they feel from the inside.

The terms “overwhelm” and “shutdown”, for me, are related to each other and related to Spoon Theory. When I’ve run out of spoons (and it’s important to point out that on any given day you don’t really have a known spoons count to keep track of) and am running on fumes, that puts me into a state of overwhelm, the most common response to which is an at least partial shutdown. It could last for moments, as I just have to stop walking, for example, and stay perfectly still for awhile, going mostly mentally blank, or it could be uncontrollably passing out on the bus.

The spoon theory is a disability metaphor (for a combination of ego depletion, fatigue, and other factors) and neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness. Spoons are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

There’s no real advance notice, per se, or ability to control an overwhelm. It’s going to happen when the spoons run out. (Although, I’m going to come back to this.) In a sense, running out of spoons is the stimulus, overwhelm is my brain’s innate reaction, and shutdown is my autonomic response.

“Breakdown” (or, sometimes, “meltdown”), however, are more circumstantial. Situational. These for me are linked to stimuli, and are environmentally caused. The crying fits I started having at my Vocational Rehabilitation job placement last year, and still have today, are examples of breakdowns. The shouting matches I get into when I catch someone feeding the goats and I respond not just to that individual person or instance but to every single time it’s ever happened are examples of meltdowns. They’re a bit different, but related in that they are the result of specific, although not always identifiable, stressors in the environment. Concrete triggers that conflict directly with the way my autistic brain is wired.

So there are energy-based states of overwhelm in which I will tend to shut down, and environment-based states of stress in which I will tend to break, or melt, down. There’s not much you can do about the former, but the open question for me, I guess, is to what degree there are things to do about the latter.

That’s with the proviso that if environmental stressors are sufficient in number and intensity, environment-based states quickly can become energy-based states, and I’ll go straight to an overwhelm.

“Burnout” is something else. It’s almost a life stage, in that most of my awareness of burnout relates to autistic adults, and in my case late-diagnosed autistic adults. Burnout is a kind of overwhelm but linked to long periods of camouflaging (masking), such as the lifetime of it that late-diagnosed autistics likely were engaged in for decades without knowing.

I’ve described burnout before as the result of the buildup of a sort of psychic plaque over a long period of time, caused by long-term camouflaging. Like arterial plaque can cause heart attack or stroke, this sort of psychic plaque can cause burnout.

So, burnout is not what happens when you run out of spoons for the day, or the week. It’s more disruptive than that because it isn’t about a discrete time but about one’s entire life (or a significantly long or intense period of it)—and so, in a sense, about one’s entire self. It’s existential.

With all of these different states in mind, it’s important to talk about “stimming”. Stimming is not a bad thing. Unless your stimming happens to be causing you or other people actual harm, stimming isn’t a thing that requires control.

Stimming primarily is a self-regulatory mechanism for calming, a coping and a survival mechanism in stressor-filled moments and environments. (This does raise the question: is stimming a potential means of avoiding, delaying, or mitigating an oncoming breakdown?) Arguably, if the outside world is going to have an opinion about the appropriateness of stimming at all, that opinion maybe should be that autistic people should do more of it, not less of it.

It also can sometimes (remember I said I was going to come back to this) keep you going through an overwhelm when your spoons have run out.

It’s a way, in those moments, to keep your body driving forward through the day, e.g. when I’m on fumes but am all the way across town and still need to get home. My rocking and swaying and hand fidgets don’t require any expenditure of mental or emotional energy but are a way to keep my body engaged in the outside world that I can’t escape until I actually get home. You aren’t, strictly speaking, controlling the overwhelm so much as putting it into a kind of suspended animation.

None of which necessarily give me any clarity on why I am seeing a psychoconsultant again, other than to say that living a life with overwhelm, shutdowns, breakdowns, meltdowns, and burnout is exhausting and too often hurts too much, and I need there to be a way for that part of it to stop.

What parts of this, strictly speaking, simply are the autistic wiring of my brain, period, and what parts might be elements of anxiety, OCD, or, perhaps, even depression over which there might be even some small element of control?

By the time today that I’d gotten up far too early for me, had what little breakfast I had time to make, stopped to get coffee only to find the coffeeshop wasn’t opening until ten minutes before the only bus I could take to my psychoconsult was due to arrive, waited half a block away from jackhammering for them to open, suffered through being on public transit, slow-walked from the bus to my appointment, got through my appointment, suffered through more public transit, got to my breakfast spot, ate, suffered through more public transit, and got to the zoo for what’s supposed to be my weekly mental health trip, I already was exhausted.

Someone online asked, “Are you able to compartmentalize until you get home and let it all out?”

No.

The most I can manage in situations like this is what you might term the No Sudden Movements strategy: walk around as slowly as you can, doing your best to avoid any sudden physical or mental jostles. The day becomes mostly a zombified daze, maybe punctuated occassionally by moments of engagement.

Which brought me back to something I wrote about reactions and responses after a different online conversation.

Without going too far down the rabbit hole, it seems to me that true reactions are not the sort of thing that can be “over” or “under” because they are what their name claims to be: reactive. There’s an action and there’s a reaction. There’s no debate, and no decision.

In physics, it’s usually described as being “equal and opposite” but of course the wrinkle when we move from physics to psyche is that the impact of what might be deemed the same stimulus is going to be different from one person to another, especially when we’re talking about brains that aren’t neurotypical. Any given stimulus could be a mild annoyance to a typical brain, yet the emotional equivalent of a sharp stick to the eye to an atypical brain.

Reactions, in other words, are the things we cannot control. Responses, however, are the things that we can.

I would add to my own words here the word “maybe”. Or perhaps just “sometimes”. It’s definitely not a given that responses can be controlled.

There is the stimulus (or set or series of stimuli), the built-in systemic reaction, and the way one responds to that built-in reaction. Sometimes—sometimes—there’s an opportunity to shape those responses consciously, even if it’s an impossibility to exert any control over the reactions.

In today’s case, the growing pile of stressors over the first five hours of my morning yielded the reaction of a mental and physical exhaustion, in fact skirting an outright shutdown (although there were moments of shutdown during public transit). The response to this stood somewhere on the line between unconscious and conscious: the No Sudden Movements strategy.

For two weeks in a row now, I have left my psychoconsults feeling like it was being argued that how things affect me is my fault. While I don’t actually believe this is what my psychoconsultant was arguing, for whatever communications breakdown reason it’s how things have been coming across.

So we are going to have to come to terms, literally, in that we need to be using the same language to describe things. For me, it’s a matter of stimuli, reaction, and response.

More than that, it’s about my needing to make clear that I do not believe even our responses always are within reach of any control. In a day with few stressors or triggers, I could outright slam my own thumb with a hammer while trying to nail something together but be conscious enough of my environment to not launch into a scream of, “Jesus fucking Christ!” in front of a bunch of children.

In a day with many, mounting stressors or triggers, I could “simply” be having trouble removing a nail from a board and there is no stopping me from almost autonomically falling into a long string of shouts and curses, no matter who is around.

Sometimes it will play out as stimulus, reaction, responses. Sometimes it will play out as stimulus, reaction, room to breathe, response.

The important thing for me is that people don’t misunderstand that I can control how my brain reacts to things, and that people do understand that circumstances determine the degree to which I can control my responses to those reactions.

Even with all these terms defined, and even if I convince others to agree with me on them, what I’m left with is the same question I’ve asked several times before.

Now what?

Something I am not sure anyone in my family ever understood is that I did not enjoy the performative aspects of Christmas or birthdays. I can’t imagine I ever mentioned it, because enjoying Christmas and birthdays is what people did.

The problem for me is that unexpected and unknown things have always caused me distress, whether or not I was aware of that fact at the time, and that’s been getting worse as the weight piles up on my life as I try to deal with an autism diagnosis that hit when I was forty-six. That’s a lot of life you suddenly need to re-examine and re-contextualize, because when you’re diagnosed that late it’s not just about the present (no pun) it’s about the past.

I hated the opening of presents. It didn’t matter whether it was me or someone else. It was all on public display, with attentions glued and expectations about the response waiting to be fulfilled. It was a nightmare.

Even later on, with relatives granting permission to just throw things out if they aren’t something I want, that’s all wrapped up in the expectations of typical society, topped off with guilt because you’re supposed to be graciously grateful that someone thought you might like this or that. No one is out there hoping you throw away what they have you. It’s taken me decades to shed some of the things people gave me.

I need control over things that are easily controlled, like what comes into my apartment, what literal, actual, physical things I own and are in my life and my space, because there’s too much else out there that I can’t have control over. I get the intent of presents but as with so much else impact often trumps intent.

Everyone loves presents! Everyone needs surprise stuff to open for Christmas! I don’t. I need predictability and awareness. I need to be aware of what’s coming into my life, and other people need to be aware that what I really need is for them not to decide or guess what I might want in that regard.

This is why the internet invented the Amazon wishlist. Gifts are great. But presents? The word itself says why I don’t want them: they are presentational. The stresses of that are too high.

“Oregon Zoo otter known for slam dunking and self-pleasuring,” headlined The Oregonian, ”dies at age 20.”

But, as visitors to the zoo might remember, Eddie had other interesting skills. He could sometimes be observed creatively pleasuring himself, proving the animal kingdom is full of unique learning experiences. While the zoo has other otters, an Oregon Zoo spokesperson confirmed Thursday, “yes, that was Eddie who displayed so much ‘confidence’ in front of zoo guests.”

This spring I complained about the Oregon Zoo (which I love, and visit weekly for my mental health) only ever acknowledging the deaths of its marquee animals, leaving people who love the other animals at the zoo in the lurch and out of luck. Coincidentally, my trip this week turned out mostly to be about discovering that both Eddie the sea otter and Bahari the goat were gone.

Eddie’s passing, of course, was all over social media, news reports, and the zoo’s own press release. Bahari’s passing (which I knew might be coming thanks to a conversation I had a couple weeks ago) I learned of only because I noticed that his photo had been removed from the wall inside the barn.

I don’t begrudge Eddie, or any other of the zoo’s marquee animals, the level of attention afforded their deaths. It’s just sad that other animals don’t even get a note on the zoo’s website, or a notice at their habitat.

Eddie’s death even made Limericking, which of course meant I had to respond in kind, for Bahari.

Bahari the goat is gone, too;
A lesser-known beast at our zoo.
A Nigerian dwarf goat,
with a short, shaggy goat coat,
remember him also, please do.

One thing about being a midlife-diagnosed autistic is that people get caught up in the occasional post-mortem of the pre-diagnosis decades, especially the childhood years.

Somewhere back there must be evidence that went unnoticed, unremarked upon. Or mistaken for something else. In my case we’re talking about the 1970s and, really, kids back then were not getting diagnosed as autistic unless they were constantly in corners rocking or flailing so much doctors put them in helmets.

As my new psychoconsultant said to me today, other types of autistic kids weren’t getting diagnosed to any serious degree until the 1990s.

If anything, I’d likely have been diagnosed with something else. We can debate whether I’d have been better off with a misdiagnosis rather than no diagnosis, but even that seems pretty pointless. The history lesson is productive not because it assigns blame but because it reinforces the diagnosis. There’s no need for guilt.

This is important not just for strategic reasons, like trying to convince Social Security that, yes, I really am disabled under their rules despite the lack of any medical or psychological record prior to 2016, but also because late-diagnosed autistics need to reevauate their past life. Late diagnosis comes with a sort of identity crisis, because it turns you spent all those years, or decades, impersonating some socially-informed idea of a normal person, just, you know, very, very poorly.

So when a family member tells me about going to see a therapist after my parents split up and how I simply snorkeled myself up in my snow jacket and stayed that way until it was time to leave, that’s not, to me, a story about how the people around me failed to notice I was autistic (because mostly no one, back then, would have recognized anything I was going through as autism) but instead a story that helps me peg down a narrative of my past that’s consistent with the narrative of my present.

The post-mortems aren’t about blame, they are about trying to find how the story of one’s then connects to the story of one’s now.

That kid hiding in the snorkel jacket is me today. That kid who went to a crowded scouting orientation, feaked out, and left is me today. The teen who blew through his twenty hours of community service in something like five is me today. There was no reason, given the time, that anyone would really see him then. It just matters that I can see him now.