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.

“If you didn’t know you were autistic,” I was asked today, “and were (as you are) strung out with the herd move issues, worried about money, and dealing with sleep and muscle pain issues, would this situation have affected you the same awful way? Would you have been able to deal with it better?”

The thing is, that experiment has been run, in more than just thought. It’s called the four decades prior to me being diagnosed in midlife.

In those prior decades, I had stomach aches that kept me out of school sometimes. I remember getting so frustrated with something that I kicked and broke my bedroom door. I freaked out after just one semester of college and never quite recovered a sense of direction. I slept with people I shouldn’t have, because I didn’t know who I was and deference is something I did.

If you go back and read the things I’ve posted elsewhere about autistic burnout, you’ll find me talking about the idea of masking—be it intentional by a diagnosed autistic or just the hidden force of social conformity pushing down on an undiagnosed one—generating a sort of psychic plaque.

Introversion and autism aren’t interchangeable things. The levels on my autism soundboard are set differently than on yours, and there are autistic people who are far more extroverted, and those who are far more introverted, than I am. It’s just that the feature set of introversion happened to overlap enough with the feature set of my undiagnosed autism to make it, for a time, a passable if incomplete substitute for addressing some social components of my life. What I’m getting at here is the idea that living my life as a presumptively-neurotypical person who was just extraordinarily bad at so much of the life of neurotypical people, while all the while actually being unknowingly autistic, was a de facto form of masking. One in which, unawares, I was engaged for my entire life. All the while, then, that psychic residue was building up in the arteries of my undiagnosed autism.

At some point it causes the emotional equivalent of a stroke, and your psyche is ravaged by decades of scar tissue suddenly flaring up in pain.

Autistic burnout, let alone its concomittant increased sensitivities, is tough to explain to some people. Especially for the late-diagnosed, it can sound to other people like you’re simply taking advantage of your midlife diagnoses to do less, to shirk responsiblities. In my case, the problem literally ends up being the opposite. I took my diagnosis to Vocational Rehabilitation precisely to use it to attempt a return to gainful employment. Then the increase in stressors due to those changes in my circumstances — going from no paid work to twenty hours a week of paid work plus an hour commute both ways — landed atop the “psychic plaque” of those four decades not even knowing I was masking, and I broke. Now I can’t tell from one week to the next what thing is going to turn out to be a stressor that puts me on the edge.

Late diagnosed adults often talk about how things seemed to “get worse” after diagnosis, but that’s doesn’t mean the dams were not going to break someday even without that diagnosis. It’s just that diagnosis brings it all to the conscious fore.

What happened in that four-decade experiment of not being diagnosed was that rather than going through life as an autistic person who could seek ways to mitigate the downsides, I instead went through life as a failure and a fuck-up.

Things are so bad now not because I was diagnosed in the comparative today but because I was not diagnosed in any of its yesterdays.

Buried and mostly unaddressed in “An Expert Discussion on Autism and Empathy” from the forthcoming journal Autism in Adulthood, Dr. Christina Nicolaidis posed what for me is a crucial question.

We have been talking about double empathy and nature of empathy and the difference between cognitive empathy and affective empathy and limitations of those distinctions. One thing that has not come up is the notion of being overwhelmed by feelings of empathy. I am not an empathy researcher but in my research and discussions with autistic friends and colleagues, one thing I often hear is this notion of experiencing other people’s emotions at such a great level that it almost feels like you have to shut down or it feels like an overwhelming, overempathy type experience. Has that been studied?

In fact, I’ve raised this very possibility before, that perhaps social and performance distress causes us to seem unfeeling to neurotypical observers.

When she asks if this has been studied, I can’t speak to whether it’s been studied directly, but in my earlier thoughts on this, I suggested that proximity to the actual and lived emotional experience of another person triggers for many autistic people the fight or flight reaction, and that in fact the study “Empathy toward Strangers Triggers Oxytocin Release and Subsequent Generosity” might point to why.

Empathy and distress were highly related in our sample and they appear to work against each other at a physiologic level. Psychologists have also distinguished between empathy and distress as motivators to help others. Batson’s empathy–altruism hypothesis posits that these affective states lead to divergent moti- vations to help others. Those who experience distress are motivated to reduce their own aversive state, while those who experience empathy are focused on relieving the aversive state of another.

I did then and I still do now question the study’s positioning of “empathy” and “distress” as opposites, since the study itself makes it seem pretty evident that all the people in question were experiencing empathy, it’s just that for some the reaction is to help the other (“[relieve] the aversive state of another”, in the study’s words) and for some the reaction is to help oneself (“reduce their own aversive state”).

While this study doesn’t specifically address autistic brains, it does suggest there are ways to study how different brains react to empathetic stimuli, and therefore ways to look at autistic people in this context.

Weirdly, this takes us right back to something I only just wrote about the neurotypical narrative that autistic people tend to “overreact” (by which they really mean outwardly respond out of proprotion to the perceived severity of the stimulus), because what we generally see are neurotypical people claiming we undereact (by which, again, they really mean outwardly respond out of proportion to the stimulus) when it comes to the emotional states of others.

If we melt, or shut, down, we are overreacting, but if we can’t reach out to help when someone else is in distress (or, for that matter, delight), we are underreacting.

In reality, in all of these cases, we are reacting precisely as our brains would dictate, in exact proportion to how we feel the force of the stimulus in question. Sometimes our outward responses follow that inner reaction and sometimes they don’t, but neurotypicals don’t get to dictate the terms of behavior.

Leaving us to ask, again, always and again: just which side here is exhibiting the lack of empathy?

I was intrigued yesterday by someone elsewhere asking if younger autistics were more comfortable talking to older adults than to people their own age, as well as one person’s suggestion that discomfort interacting with people one’s own age when younger might be due to the “direct comparison” that can occur and prompt masking.

When I was young I spent a lot of time, summers primarily, hanging out at a theater company both my parents at different stages had been involved with, and as a theater that did a lot of work with schools and young people it was an environment that was perhaps generally less judgmental about having kids around than other sorts of places. In a sense, it was an environment more naturally accepting of atypicality.

So I wonder, now, if that environment, much like my later internet bulletin board circles and pop culture fandom circles, might not have been not quite so harsh a juxtaposition between myself and the neurotypical world as one would experience elsewhere, thereby shielding me from diagnosis.

Which is something of an irksome mixed bag.

On the one hand, environments that don’t balk at undiagnosed atypicality are good. On the other hand, that perhaps helped keep my autism unrecognized and thereby kept me from being able to access help in navigating other environments, and my future. That future being my present, and the long decades that led to it.

Someone on Twitter asked fellow autistics whether or not they feel they overreact. It got me thinking about that word, and who or what decides what kind of reactions allegedly are “too much”.

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 cannot control how my brain reacts to stimuli. I can, sometimes, control my responses to my environment. More, sometimes it’s true that reactions to certain stimuli happen at a comparatively slow enough pace that even there I can control how I respond. My inner reaction might be more severe than I let on with my outer response. Where that line is, I have no idea. I’m sure it varies.

The gist is I don’t believe that “overreaction” is a thing. Reactions are built into the structure of the system, in both physics and the psyche; the system reacts to stimuli in the only way it can. Responses are the decisions we get to make both to our general environment, and, sometimes, even to how we present our reactions to the world around us. Masking, for instance, is a response, hiding our innate reactions.

“Over” and “under” when it comes to reactions really is about social expectations as informed by how the typical brain behaves. You could argue how autistic people “should” respond to things (you shouldn’t, but you could), or investigate the degree to which that sort of control is even possible in different environments and with regard to different stimuli, but you simply can’t argue that we overreact.

My reactions to stimuli are proportional to the force with which they act upon my brain. If anything, autistic people are taught, both explicitly and implicitly, to underreact (which, here, really means underrespond), for the sake of polite, neurotypical expectations.

Let’s talk about that instead. Let’s talk about the overreaction of neurotypicals to how autistic people present themselves. Let’s talk about the dangers of actually-autistic people buying into that narrative.

I’d meant only to talk about one way in which I think we end up with late-diagnosed actually autistic adults, but while browsing the autism tag (which they seem finally to have purged of all the t-shirt and pirated ebook spam) ended up learning something new.

The only theory I’m aware of that seems to make a decent stab at explaining the many seemingly disparate features of autistic psychology — from inertia to communication problems to hyperfocus and spiky profiles — is monotropism. However, this theory (formulated by autistics who aren’t professional psychologists) has received relatively little attention from psychologists, and awaits direct empirical verification.

Naturally, I took a moment’s detour to Wikipedia for what it had to say about monotropism.

Monotropism is a cognitive strategy posited to be the central underlying feature of autism. A monotropic mind is one that focuses its attention on a small number of interests at any time, tending to miss things outside of this attention tunnel. The theory of monotropism was developed by Dr Dinah Murray, Wenn Lawson and Mike Lesser starting in the 1990s, and published about in the journal Autism in 2005.

All of which led me to that 2005 paper, the reading of which felt a great deal like it felt when I began to read other people talking about their autistic experiences in the year or two after my diagnosis. By which I mean there was lots of vigorous nodding.

To a person in an attention tunnel every unanticipated change is abrupt and is truly, if briefly, catastrophic: a complete disconnection from a previous safe state, a plunge into a meaningless blizzard of sensations, a frightening experience which may occur many times in a single day. Following such an episode it may take a long time for any other interest to emerge. The first basin of attraction to draw the interest is likely to be a familiar action which may replace any inclination to repeat the failed attempt.

Remarkably, just hours later while setting up a Quora account I discovered an article about a recent fMRI study that seems to show monotropism in autistic adults in action.

Thanks to the fMRI scans, the researchers were able to confirm that in the brains of people with autism, connections persist for more extended periods than they do in the brains of neurotypical individuals. In other words, in autism, the brain finds it harder to switch between processes.

There’s more, of course, in the findings themselves.

No significant correlations were found between measures of cognitive function and sustained connectivity in individuals with autism. However, a significant positive correlation was found between sustained connectivity and social impairment scores. Similarly, Rashid et al found a link between dynamic functional connectivity and autistic traits assessed using the SRS. These findings also dovetail with electrophysiological results showing delayed auditory evoked responses in autism suggesting temporal prolongation of steady-state responses to stimuli. Temporal smoothing of neural responses with prolonged brain states may also be consistent with another hypothesized physiological mechanism in autism, that of decreased ability for shifting of attention.

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.

Really, it’s just that I’m now rapidly becoming a fan of monotropism as a potential way to explain and explore what the fuck the autistic brain is doing, and how, and why, and so you get two posts from me in two days after three months of radio silence.

Recently, I had to go for a new psychodiagnostic evaluation by an Oregon Department of Human Services contractor as part of the state’s disability determination services for Social Security benefits purposes. I’d mostly been avoiding thinking too much about being autistic because there are too many other things that need to be done right now.

Afterward, though, I ran across a paper by Laura Hull et al about developing a questionnaire about autistic camouflaging, and one part in particular stood out for me.

The Masking factor demonstrated the smallest difference between autistic and non-autistic samples in this analysis, suggesting that there may be more overlap between these two groups than for the other factors. Masking may be less specific to autism than the other components of camouflaging, and may reflect more general self-presentation or impression-management strategies applied to autistic characteristics. However, further research is needed to directly compare masking strategies and other self-presentation strategies in autistic and non-autistic samples to determine similarities and differences. In the autistic sample, masking was not significantly correlated with autistic-like traits, suggesting that it may be a response to the identification of being autistic rather than to the presence of specific autistic characteristics; in contrast, a significant positive relationship between the two was observed for the non-autistic sample, suggesting that the two groups may have been using masking strategies in response to different motivations.

This right here effectively seems related to my previous argument about the background radiation of social conformity that affects everyone being part of why I was not diagnosed as autistic until I was 46. In it, I suggested that contrary to the assertions of a different paper on autism, camouflaging is not inherently or intrinsically conscious.

Simply put, those “more general self-presentation or impression-management strategies” the paper suggests everyone has exist because society both expects and reinforces conformity.

In my case, since I’ve discovered that I am deferential to a first-instance demand even if it puts me at risk for a second-instance harm (e.g. rushing to accept my vocational rehabilitation job coach’s suggestion of a job placement despite not yet having even finished our job development work, a suggestion made in his closet-sized office that I just wanted to get out of), on both a larger and yet in a sense more subtle scale that’s in essence what I did for forty years.

I deferred to society’s conformist background radiation without even thinking about it.

Anyway, the paper in question reminded me of my earlier argument about conformity, because in it I took quarrel with a different paper’s assertion that camouflaging necessarily was a conscious activity. I simply don’t believe that’s true. Instead, I think that camouflaging, including neurotypical “self-presentation or impression-management strategies”, often can be just unconscious deference to the background radiation of social conformity.

With NT society itself engaged in a kind of camouflaging, and in cases like mine with a deference to near-term harm despite the potential longer-term consequences (whether I know this is what I’m doing or not), I think this clearly is one factor in how we get late-diagnosed autistic adults.

The crisis facing me now, that impacts both my future financial survival and my mental health, is that deferring to the demands of conformity for decades meant I tried so hard and yet so unsuccessfully to work without accomodation — because I didn’t know I needed it —means I’m likely screwed out of Social Security disability benefits (SSDI, not SSI).

(Technically, the entire SSDI issue still is in limbo. SSI is under evaluation. But to get SSDI, once I’ve officially applied and officially been denied, it would take an administrative law judge agreeing that my work history is almost entirely “Unsuccessful Work Attempts”, something I don’t even know if an administrative law judge has the leeway to do.)

Both the general discussion around adult autism and the ways in which eligibility for disability benefits is considered needs to incorporate the ways in which deferring to society’s conformist gravity (not to switch physical metaphors here) impact someone who was autistic all their lives without knowing it.

Finally having labels and reasons to attach to a lifetime of struggle was supposed to bring both clarity and progress. While the clarity can be found within the autistic adult, the progress needs understanding and action from without, by the very society whose insistence on conformity yielded a late diagnosis in the first place.

I’m not suicidal (I have my days where if the world ended I might not do more than shrug, but I’ve no interest in hastening the event), but buried in the Discussion section of a new study on suicide among autistic adults is a look at camouflaging that concerns me.

Camouflaging significantly predicted suicidality in the ASC group, after controlling for age, sex, presence of at least one developmental condition, depression, anxiety, employment, and satisfaction with living arrangements. Camouflaging and age of ASC diagnosis, and suicidality and age of ASC diagnosis were not significantly correlated. This suggests that camouflaging is directly associated with suicidality rather than in combination with delay in ASC diagnosis. Camouflaging also explained significant additional variance in suicidality above depression or anxiety, suggesting that the association with suicidality is, at least in part, independent of mental health. This is the first evidence of camouflaging being a unique independent risk factor for suicidality in ASC.

In order to engage in camouflaging, one must have insight into one’s own difficulties, how these may be negatively perceived by others, and have a strong motivation to adapt one’s social behaviour to be accepted. Understanding associations between these factors with camouflaging, and the consequent impact on mental health would be valuable. For example, autistic people who have greater insight into their own difficulties are more likely to be depressed than those with less insight, and autistic people are able to accurately predict how family members perceive them, despite being different to their own view. It would be interesting to explore whether perspective taking ability and insight into one’s own difficulties increase likelihood of engaging in camouflaging behaviour with consequent negative impact on mental health and suicidality.

Emphasis added because I quarrel with that particular statement and the particular view of camouflaging that it espouses.

When you are not diagnosed until, say, midlife, you in fact likely spent decades without much in the way of “insight in one’s own difficulties”, yet you likely spent much, of not most (or, for some, all) of those decades camouflaging just due to society’s background radiation of conformity.

One thing I’ve been pondering lately is the idea that society has a sort of background radiation of conformity. So, even if you don’t know you’re autistic, you conform unconsciously because you’ve been “irradiated”, unless you have the sheer self-awareness and strength of will to resist. That’s how you go four decades camouflaging, masking, passing without knowing — and then hit midlife and wonder why the hell all of these routine things about the world suddenly hurt so much.

It’s problematic, then, if not potentially dangerous, for researchers or practitioners to think of camouflaging purely or solely as a conscious and deliberate act. We need research and practice to consider the implications and impact both of intentional masking on the part of autistic people with a diagnosis and unintentional conformity on the part of autistic people who didn’t yet know they in fact are autistic.

The latter, by its nature, mostly comes into play only once you receive a diagnosis. It’s then a matter of retroactively and retrospectively looking back at your pre-diagnosis life to try to see where you might have lucked out in being a part of environments where your differences happenstantially were accepted and where instead you might have been subject to that background radiation of conformity.

“It would be interesting,” say the study’s authors, “to explore whether perspective taking ability and insight into one’s own difficulties increase likelihood of engaging in camouflaging behaviour with consequent negative impact on mental health and suicidality.”

How many people does this leave out of the equation?

Everyone, autistic or not, is subject to that conformist background radiation to one extent or another, but it’s going to have a greater deleterious effect upon autistic people. Camouflaging comes with risks, and both short-term and long-term harms, regardless of whether you knew at the time that it was happening. Surely if camouflaging brings “negative impact on mental health”, it’s worth also specifically looking into what effects unknowingly camouflaging had on late-diagnosed autistics?

If researchers and practitioners define camouflaging as something that only results from “perspective taking ability and insight into one’s own difficulties”, they are leaving behind all of us who spent decades not knowing we were autistic.

It’s already tough enough, being diagnosed in midlife. Researchers and practitioners shouldn’t make it worse by leaving us out.

There are two ways to get Social Security Disability Insurance (SSDI) benefits, more or less.

  1. Accumulate enough of your own “work credits” before becoming too disabled to work, in essence having paid into the system enough to receive benefits.
  2. Become disabled before the age of 22 and have benefits calculated based upon the “work credits” accumulated by a parent, a scenario in which you are considered a “disabled adult child”.

On the other hand, if you happen to be a late-diagnosed autistic person who during the previous three decades did your best to be an employed and employable adult, not knowing that there were actual, diagnosable reasons for your difficulty in achieving this goal, you most likely are shit out of luck.

Social Security will deny you on both counts.

Literally, you will have not worked enough to receive benefits based upon your own work history, but also will have worked too much to be considered having been disabled prior to the age of 22.

If you, your family, and the world around you all agreed, for all those decades, that you were “normal” but for some reason were just some sort of failure or fuck-up that couldn’t seem to get, or hold onto, a job, you kept trying and failing, over and over and over, because the “normal” thing to do was to get, and keep, a job. In the process — because you didn’t know, for all those decades, that you could have lived a life in which you, your family, and the world around you instead knew there was a diagnosis out there which explained so many things, one the having of which might have meant being able to insist upon ways to both accomodate and mitigate those things — in reality you were subjecting yourself to stresses and pressures and environments that likely added to your long-term problems and mental health issues.

So while you were technically disabled from birth, you didn’t know that, and you kept trying to do the same things everyone else did effortlessly, and trying to do them in the same ways in which everyone else did. You effectively and essentially hurt yourself, over and over, for decades.

Decades later, you have a diagnosis. There are, and were, reasons for so many of the difficulties experienced along that border between you and the outside world. But as far as Social Security is concerned, none of that matters. The fact that you hurt yourself for decades trying and failing to be what you weren’t, that doesn’t matter. The fact that you in some ways made your disability worse because you didn’t know it was there, and so acted like it didn’t exist, that doesn’t matter.

All that matters is that you did not work enough to receive benefits based upon your own work history, and also worked too much to be considered disabled before the age of 22.

If I can step back and be a bit meta: I know this post is disjointed. I know it’s terribly-written. I know it’s not clean. Today turned into shit (and not even because of what this post is about), and I don’t really care.

I know, also, that there’s nothing to be done about any of this.

My process of applying for SSI (which is paid out of general approproations, rather than tied to work history as with SSDI) continues, but the prospect of SSDI, and it’s potentially higher level of benefits, is dead.

However, once the official, written denial of my SSDI claim to be considered as a “disabled adult child” arrives, I am going to appeal that decision. Not for reconsideration, but simply in order to get Social Security to sign off on the above description of my circumstances as being substantively correct.

I just want them to admit to it. I want their official admission that this ridiculous, harmful irony indeed is the inevitable result of their purely mathematical policy.

Well, no. That’s not all I want.

I also want them to approve my SSI claim.

If I had been born, say, with some sort of muscle disease but didn’t know it until I was 46, and prior to that eventual diagnosis I was employed now and then, which was making it worse because I was working without knowing I should be seeking various accommodations for a disability, and did this until it laid me out, would Social Security still have decided that I’d not worked enough for SSDI, but also worked too much to be considered disabled before age 22 and so also not eligible under a parent?

The answer to that might very well have been the same, but it seems to me mildly barbarous for the official Social Security policy position to be, “If you didn’t know you were disabled so you spent your adulthood trying to be ‘normal’ but ‘failing’, you screwed yourself out of financial support both ways.”

Worse, I keep feeling like I got screwed by being a totally useless amount of autistic.

Either I should have been more autistic so it would have been obvious and my life would have been able to address it, or I should have been less autistic, so it might have not unknowingly, beg your pardon, fucked me.

That’s me, feeling mediocre all over, even when it comes to being actually autistic.

When you are actually autistic but late-diagnosed, you think a lot about whether or not you’ve been stimming for all those decades, or were suppressing your stimming because it didn’t match (as I’ve discussed before) society’s background radiation of conformity.

It’s clear to me now, from thinking about things over the last year, and also just trying to step back from myself, the myself that I was for four decades as an undiagnosed and unaware autistic person, and see if any stims surfaced on their own. What’s becomes clear to me is that a lot of my stims are in my hands. I don’t flap. I fidget. I rub the skin on my middle finger with my thumb, sometimes to the point of callouses. I’ll rub the tps of my thumb and forefinger together, in circles. I’ll interlace the fingers of both my hands and slide them in and out of each other.

Overnight, I realized how much of my stimming for the two decades of 1998 to 2008 probably went into smoking.

Not just the smoking itself. All its associated fidgets.

The tapping and packing of a freshly pulled out cigarette. The switching up how you’re holding one when its lit. The flicking of the lighter. In essence for two decades I had a sort of masked stimming, for lack of a better term. Stimming that was in the form of a thing many people, autistic and allistic alike, did as a matter of addictive course, and so unnoticed as my being autistic.

What’s interesting to me in retrosepct is that when I quit (cold turkey, exactly three days after my dad died, without a second thought or a look back), unlike many ex-smokers I didn’t need something to satisfy any lingering oral fixation. No toothpicks. No pen-chewing. No gum.

I did, however, keep my Zippo on me for years. I lit other people’s cigarettes, and continued distractedly flicking the lid open and closed. Looking at it now, it was to maintain the hand stimming I needed beyond my days as a smoker.

Mostly I find this reassuring.

When you are late-diagnosed (for me it was at 46) you experience a kind of autistic imposter syndrome. “How can I possibly be autistic, you think to yourself (a lot), “when I didn’t exhibit any of these things autistic people often exhibit, for all those decades?”

It turns out I did, but they were hidden in plain sight.

It was a bad sign. Immediately upon leaving my apartment to go host visiting hours at The Belmont Goats, the brightness and heat of the afternoon sun of the ongoing heatwave was like suddenly being slapped across the face. I’d already announced we would be open. There was no turning back.

By the time I’d finished setting up for the two-hour shift, I felt like I was running on fumes. That sensation usually precedes a breakdown.

I took a beat, took a breath, and walked in the brightness and the heat the two blocks to the nearest market to get ice. They were out. I took a beat, took a breath, and walked in the brightness and the heat even further to the next-nearest market, and then walked in the brightness and the heat back to the goats. I opened ten minutes late. I was not in good shape.

Soaking a bandana in cold water and wrapping it around my head, I sat down in the shade on the deck at the front of the barn, with our shop fan aimed squarely at me. I was still pretty shaky.

I managed the two-hour shift. I managed to get through the closing procedure feeling mostly okay.

And then on the walk home in the brightness and the heat, I had a breakdown. It was brief (I won’t say “minor”), and I was able to keep going rather than stop in the brightness and the heat. Once home, things started the slow process of calming, the tension its slow movement of ratcheting down.

One thing I’ve been pondering lately is the idea that society has a sort of background radiation of conformity. So, even if you don’t know you’re autistic, you conform unconsciously because you’ve been “irradiated”, unless you have the sheer self-awareness and strength of will to resist. That’s how you go four decades camouflaging, masking, passing without knowing — and then hit midlife and wonder why the hell all of these routine things about the world suddenly hurt so much.

There is no question at this point. For the decades before my diagnosis, I had been ignoring or rationalizing or not even recognizing what the brightness and heat do to me, have probably always done to me. Although it’s probably true that the “psychic plaque” of a lifetime of unknowingly masking that increases the risk of a midlife autistic burnout comes into play here, as well. To wit: burnout made me more sensitive to some stressors that I might have managed or mitigated more easily in the past.

Autistic burnout, let alone its concomittant increased sensitivities, is tough to explain to some people. Especially for the late-diagnosed, it can sound to other people like you’re simply taking advantage of your midlife diagnoses to do less, to shirk responsiblities.

In my case, the problem literally ends up being the opposite. I took my diagnosis to Vocational Rehabilitation precisely to use it to attempt a return to gainful employment. Then the increase in stressors due to those changes in my circumstances — going from no paid work to twenty hours a week of paid work plus an hour commute both ways — landed atop the “psychic plaque” of those four decades not even knowing I was masking, and I broke.

Now I can’t tell from one week to the next what thing is going to turn out to be a stressor that puts me on the edge.

This heatwave has been murder on me. It’s finally breaking, a bit, but who knows for how long. Some days my brain is filled with foam and I can’t even move a thought around. Some days I want to get things done, but there’s nothing in the tank. I can’t sleep well. Dreams feel like threats.

I write this up because I’m going to need anyone who deals with me in any official capacity from here on out to understand these things, be they psychotherapist, vocational rehabilitation caseworker, primary care physician, job coach, or social service provider.

Autistic burnout is real. I’m being knocked around by it. Yes, you really can go decades, your entire life up until now, not knowing there was a real reason for problems you experienced. Not seeing the signs, or ignoring the signs, because the background radiation of conformity tends to win.

Conformity is like inertia. The typical way of being continues to be, in a straight line, until acted upon by an outside force.

In this case, the outside force is diagnosis, and if it gets the opporunity to exert itself, everything can come barreling down at you at once, even if “at once” is a slow-motion weight descending on you for months on end.

I am very tired. I am learning a lot, but I am very tired, and I don’t yet know what to do with what I’m learning, or what any of it means for the help I need, or what it says about what kind of help I need, or for the challenge of convincing people of the help I need.

I’m not lazy. I’m not taking advantage of my diagnosis. I’m not lying when I say that for four decades I had no idea.

This is who I am now, whatever I was, or thought I was, before.

I’m left with the same question I seem to be running into all the time these days.

Now what?