December 2018

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?”


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.