eye contact

Eye contact is the go-to example often used in autism discourse when talking about masking. Growing up, I was often told how important it is. As a kid, as a teenager, it didn't come naturally to me, and so easy it is to chalk it up to being nervous. There is a presumption that we all have to learn social skills and some learn faster than others. I learned to make eye contact, but to this day I'm always worrying about whether I'm making enough or too much, or where I'm supposed to be looking exactly.

If we don't even try, we look autistic. What if that's because we are autistic? It takes us much greater effort to do, but we do it anyhow, it to mask what we are.

As I've written about in myriad ways, I reject any solid notion of who or what we are. We are always changing, growing, dying, learning and forgetting. It's a mistake to think a label makes it any more immutable. We shouldn't be judging ourselves, and we should always strive to do better, regardless.

Eye contact isn't just this trivial thing people do. We are animals, our lives full of systems evolved to help us adapt and flourish. We use our superior cognitive abilities to blind ourselves to all that, reducing everything to arbitrary choices we make. Eye contact stimulates oxytocin, which produces feelings of trust and affinity. For autistics, that system may not work as it should, so eye contact doesn't do anything for us. We don't feel trust, we don't relate, whether we make eye contact or not.

What does this mean for those we interact with? Do we want their trust? Do we want them to relate to us? Do we want to try to overcome this obstacle to human connection, or do let our current circumstances define our entire lives?

Jenny was big on this idea of being who we are. We are all different kinds of flowers and that's ok. No pressure, no judgment. I believed in that, too. I stopped masking so much. I played Civilization V all day every day for over a year. I stopped making eye contact. Towards the end, she commented that she only ever sees my profile. I barely thought about it at the time.

I've grown a lot. I don't like calling it masking. I thought I was superior to everyone, but I had so much to learn. I still do. We can call autism a disability or a superpower, but no matter what we are or what we call it, weaknesses will be overcome and strengths will atrophy, depending on what we do with what we are.

Existential OCD

 "Existential OCD" is defined as obsessive thoughts about philosophical questions like, what's the point of all this, and why does everything have to die. I'm on the fence about calling this autism, but whatever it is, I do seem to have it.

Looking at my life, the severity of dysfunction.. I've always struggled to explain it. Images taken from Instagram.

As for ADHD, it turns out to have so much overlap, they're throwing it all on the same spectrum. It's all just labels for clusterings of symptoms. What are we talking about neurologically? What causes it? Without these pieces, I don't understand what words mean.

Is anyone "really" autistic? Some people think self-identification is the bottom line. Others put too much stock in professional diagnoses. Even a diagnosis is just an arbitrary label. Words only mean as much as they represent to the people hearing them. When language is too vague, interpretations will be all over the place.

theory of mind

I've seen a lot of social media commentary on the frustration of telling others they're autistic, only to be met with disbelief and being told, you don't look autistic! I wish I had that problem. If I tell people, I'm not sure many would be surprised. I'm more likely to get responses like, ah that explains.. a lot. 

I think about all the times I'd be out and around people for one reason or another, not sure what to do with myself, just looking at the floor, pacing in circles until I can go home. I'm not doing anything autistic! I'm bored, nervous, I'm just thinking!

Driving my aunt's car last weekend, I was very cautious. I haven't done any driving in decades. I focused on control, making turns at clean tight angles, accelerating and decelerating smoothly. I didn't go much over 10mph because we were in a parking lot, and I wanted to be confident the car would do exactly what I intended it to do, before going out where there are all sorts of things to run into if I'm a little off.

I thought I did well. Did I drive like a neurotypical would? Maybe not. I was worrying too much about making my aunt nervous. Creeping along at 10 mph, just going in circles, maybe I seemed to be driving like Rain Man. It's too easy to make assumptions about why people do things differently. Assumptions get it wrong all the time.

So would this mean I'm not really autistic, or that autistics aren't what neurotypicals understand them to be? Regardless, it bothers me a lot how others seem to perceive me and my neurodivergent behavior. It is not flattering. Where is theory of mind, when we're just making it up with an incurious preference for our assumptions over reality?

embracing autism

I hate the autism diagnosis and that in itself may be symptomatic of autism. It is too vague, too open ended, what good is it? They say it's common for people on the spectrum to have no interest in fiction, but also common not to have that issue at all. Every symptom is like this. Common to have it, common not to have it, and common to have completely opposite symptoms. What kind of diagnosis is this? Is it common for people with autism to hate the ambiguity of it?

I hate the wide gamut of severity, too. Low vs high functioning doesn't even begin to cover it. I'm low functioning in that I don't work or have friends to do much of anything, but high functioning in my ability act like an otherwise neurotypical person when I'm in public. Nobody with any familiarity with severe autism would confuse me for one of them, and yet it doesn't make much sense to call me high functioning.

My therapist pointed me towards a website with a range of diagnostic tests. While there are some areas where I don't seem to be at all autistic, overall, I score in the low to moderate range for autism. There's even a test specifically for masking, for those who might score deceptively low, due to having the self-consciousness to camouflage, and that's where I score very high. Well above the average for both neurotypicals and autistics. I'm trying like hell to be normal, why isn't it working?

What do I do with all this? I don't know. I don't want to come to terms with it. I don't want to lean into making excuses. I desperately want to feel less alone, less like a failure. I doubt the utility of saying it's not my fault, it's just autism. That just makes me feel hopeless. Whatever we call it, I already know that I'm like this and I'm so tired of it.

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My entries have been longer lately. I've always tried to keep them to a reasonable length aside from that time I was shrooming, but I've been worrying about that less lately. Why do I write? Because I feel like it, and hardly ever feel like doing much of anything. I need to find someone with motivation to spare, but short of that, I write because it's the only thing I feel like doing, so why not. Given that I'm not really trying to do anything else, such as write something interesting other people might want to read, I might as well relax some of these rules I've been going by.

I could pretty much just write all day. I don't know why. I don't do it, because it would serve no purpose. I don't write with enough intention to point my writing in any particular direction. I only know how to ramble about whatever I feel like going on about. I did ok with community college level papers. I have some hope that I could learn to do more than this, but so far, I just keep doing this.

This is something an autistic person would do, isn't it. Which I hold back, because I don't approve. Better to camouflage it.

What IS autism, I tried asking Google, but could only find vague studies and theories. That's a broader problem with almost everything in the DSM, but it's especially true of autism. They don't know. Even when they do study it, I don't know if they're studying severe autism or high functioning autism and that's especially important given my concerns that they might be two separate unrelated disorders. It's all so poorly defined.

I always thought lacking "theory of mind" was one of the most fundamental elements of autism. They're in their own world, in large part because they don't think about anyone else's world and thus, the world in between connecting us. I think about this a lot, in every conceivable way. I can't interact with people, without concerning myself with what they're experiencing, thinking, and feeling.

Then it occurs to me to question conventional interpretation. Is it possible they're actually getting the phenomena completely wrong? People often read too much into superficial aspects, failing to even consider the ways in which that can be misleading. Could this be such a case?

What I don't do is presume to understand other people. I never know what anyone else is thinking, feeling, or experiencing. I do my best to ascertain that, precisely because it is impossible to know. It is neurotypical to assume others are like us, until given evidence to the contrary. I've read that people are predisposed to assume that we feel, think, and experience things pretty much the same way. Our "theory of mind" may be based on these presumptions of others, whereas I diverge not in lacking empathy, but in thinking so much about it.

Lacking this presumed theory of mind, a person might diverge in a number of different directions, with whole chain reactions of developmental consequences. It may be atypical that I leaned so far into trying to compensate, but lacking an instinct to presume shared normalcy may be the common denominator.

My father's favorite thing in the world seemed to be reading fiction. He also liked movies and television shows. He didn't like much of anything else. He didn't have friends or much interest in other people. He didn't care about his own appearance, and barely noticed anyone else's. He was always complaining about how everything made him uncomfortable. He had a hell of a time finding clothes he could stand to wear. All pretty textbook autism.

I read that some autistics don't like fiction because they don't relate to the social dynamics involved. If that has any basis in reality beyond the guesswork of neurotypicals, it isn't the issue at all in my case. I don't like that it isn't real and that it's passive. If I'm just passively absorbing information, I want to be learning about things that actually exist. 

If I'm instead trying to to enjoy myself, I want it to be more interactive. I get so irritated when video games have too much story, but I don't even play games anymore, lately. I just want to train. On the days when I can't, I just sit here obsessing about it, doing nothing. I'm highly sensitive but trying to get used to being punched in the face. I've made a concerted effort to take more interest in people and appreciate the massive benefits over doing everything alone, but it certainly isn't what comes naturally to me. 

I desperately depend on my routines to function at all. I handle uncertainty very badly. I crave novelty while avoiding it like the plague. I struggle with loud noises and bright lights, but I also care more about how my clothes look than how they feel. I care what other people are thinking, but I'm never really sure.

My whole life I've been hoping they're not thinking I'm autistic.

executive dysfunction

Executive function is a technical way of talking about the part of the brain that makes decisions. We decide what to do, we decide how much attention to pay our feelings, we decide what to think about. Any time we're talking about mental health, it's important to remember that we all have the same system of basic functions, which never work perfectly. In discussing mental health problems, we are not taking about a different system, but degrees of severity in a system that we're all familiar with.

We all know what it's like to consider doing something we really don't feel like doing. We know it can be worse if we're sick or exhausted. A person with serious problems of executive dysfunction might say they're having a very difficult time doing things they don't feel like doing. Knowing what that's like, we're told it sucks, but you have to just do it. Failing that is then seen as failing a trial the rest of us have succeeded.

This is where people often jump to character judgments. Such a person is lazy, misguided, not really trying. Usually, the executively dysfunctional person themselves will feel the same way. We're failures and it's obviously our own fault.

Then maybe we learn about a condition like ADHD and how it causes this. We find ourselves wading through ADHD memes and realizing lots of other people have surprisingly similar problems and they're calling it ADHD. What a relief to understand that it's not a character flaw, but a neurological condition, and we're far from alone in trying to navigate life in spite of it.

Here's the problem though. Everything about us is a neurological condition. We can label and categorize variations in neurology, we can define some of it as neurotypical or neurodivergent, but we are all the way we are for a vast array of reasons coalescing around how our brains work. Nobody should feel bad about who they are, because who we are isn't something we have any real control over. We don't exist without everything that goes into our existence. There is no self perched above it all, beyond the reach of cause and effect.

So why should having a diagnosis put us at ease? I tell myself all this, but it still feels like an excuse, when we talk about how difficult ADHD makes doing the dishes. Everyone hates doing the dishes. Over the decades, I've gotten a lot better at overcoming the problem, so I know it's not impossible. We are under the control of all these factors that go into who we are, but one big factor is what we're doing. If you're lifting heavy weights, you will get stronger.

If we rest on notions of this simply being the way we are, we will not get stronger. In order to grow, we need to do what we find difficult, but if we try to lift too much, we fail and injure ourselves. When we have a diagnosis, it can help us calibrate our expectations. We might not be able to handle what neurotypicals do, but we need to figure out what challenges we can handle. Aim low enough that we won't fail, which means facing our limitations, but don't aim so low that you don't need to try.

While I've just about conquered the dishes problem, I don't understand how people can spend ten hours a day, five days a week, doing things they don't feel like doing. I don't understand how people hold jobs. This is possibly the most fundamental way to explain why I don't work. The nature of my disability is such that I cannot even approach that level of executive functionality. My mind rebels far before reaching such an insane threshold.

ADHD alone typically doesn't stop people from working. They might be terrible workers, they might lose their jobs a lot, bouncing from job to job, with difficult stretches in between - but I've never worked. My case is different. I suspect that my endocrine problems are the other half of that equation. In addition to acute executive dysfunction, I had abysmal energy levels due to the deficiency. I could barely stay awake doing much of anything. Think about what a brutal combination that is.

A lot of what hormones do is gradual, developmental, it takes time. It's not like the time a drug might take to peak in the system, but rather time to alter the course of our ongoing physiological development. There is no peak to reach, but a whole process that's now moving in a different direction, upon supplementing a deficiency. There will be differences months out, more differences years out, and even more differences decades out.

So, having been on somatropin for seven years or so now, I've gradually been doing better in a lot of ways, but it only addresses half the problem. My excuses are good, but that doesn't make my life any less of a wreck in consequence. Excuses do not walk the dog. This is not to shame anyone, but it's a reality we have to be honest with ourselves about.

dis/connections

Before I started this blog, I had a Livejournal. I stopped using it shortly after moving to Chicago with Jenny. Finally I had a relationship, screw everyone else. When I started blogging again, I wasn't interested in the social media side. I wanted it to be public, but I wasn't looking for conversation or likes. I didn't tell anyone about the switch because I didn't want to be social.

One of my old friends did find it, made a few comments, and disappeared. I regret not even noticing the new comments until he'd gone away. That was typical of the relationships I'd had most of my life. Noticing too late, not sure what to do, not really caring. Handfuls of random people I didn't pay much attention to, and then I'd disappear and forget about them.

Sometimes they'd get mad at me over some misunderstanding and I'd never hear from them again. I never even tried to explain it was a misunderstanding. Not that I didn't care, but I didn't care enough. It felt exhausting and futile. It felt safer to just drop it, to focus on my daily routines of escaping everything. Sorry, Mike.

I'm disgusted with myself and how I engaged with people, but at the same time, I know that I was a mess. I'm pretty confident that ADHD is my core mental health issue, causing a lot of my anxiety and depression, but for most of my life, it was masked by my growth hormone deficiency. I was so tired, so fragile and weak, it changed the way the ADHD presented. It also made it worse. I couldn't handle trying to be social when I was so tired, just wanting to be alone with my coping strategies.

I haven't looked back at my old Livejournal in many years, but they emailed me some promotional thing, and there I was. Reading my old entries, then reading the comments. All these people I haven't thought about, some I knew better than others. Some tried to be friends with me, but I'd always just drift away. That was my nature, always adrift. Disconnected.

I've felt like writing more lately, so I posted something there too. A brief entry at first, why not. A week later, after failing to make it to the gym on account of feeling lousy for no good reason again today, I found myself writing a new entry there. A summer of these last few years in Vermont. As if anyone from my past might read it. Never know. Maybe they get the same promotional spam.

non verbal

It was difficult to distinguish the autistic children I grew up with from the severely retarded - another example of a term that's been ruined. We're not supposed to use it at all anymore, but "developmentally disabled" or "cognitively impaired" is too vague to communicate what I want to communicate. I'm talking about severe retardation, and I don't know of another term that would suit my purposes here. 

It was impossible to have any kind of conversation with any of them. If they were verbal at all, they only used words as tools to express needing something and the like. Any effort to socialize would either be ignored entirely or met with some sort of shrieking tantrum, because you've invaded their boundaries. 

One of them I got to know a little better than the others, as his mother would babysit me sometimes. He was more laid back than most, hardly ever did any shrieking or throwing of food. He could talk, but he would only talk to himself, pacing back and forth muttering incomprehensibly. He had no interest in playing with me or really playing at all.

What's remarkable about autism is that it's not mental retardation in any sense, despite any similar outward manifestation. It can resemble it behaviorally, but the underlying reasons for the behavior are entirely different. It is more mysterious than a straight forward impairment of ability or capacity, but rather seems to be an impediment to their experience of the external world, including their own bodies.

They see, hear, feel, but how their mind interprets the data seems to be different. Muted, confusing, unreliable, it is difficult to say, given only the information they give us, but that is my interpretation of what was going on with these kids. 

To say they had difficulty socializing is misleading. They were trapped in their own minds, such that they didn't understand socializing. They'd ignore someone, not due to an attention deficit, but because they were barely aware of a person's existence, never mind why it matters. They don't experience other people, until people force their way into their awareness, which must be jarring. Lacking basic social experience, because of how they're cut off from it, they express their distress in more infantile or animalistic ways.

As they get older, they do gain that experience eventually. It may take a lot longer, simply because the information comes in at an erratic and confusing trickle. They learn to adapt, they learn to communicate, they learn why it matters. As adults they can seem more normal, but still distinctively autistic.

When I talk about them being non-verbal, it occurs to me how even this could be misunderstood. When I am depressed or anxious, I have trouble talking. I can't think of anything to say. I might refer to that as non-verbal. There is no comparison though. It's not a lesser degree of the same impairment. I might look at that symptom on a list of diagnostic criteria and think it resonates, if not for having known autistic people and what non-verbal means in that context.

I would say they clearly have a distinct disorder with no correlation to most people who are diagnosed as being somewhere else on the spectrum, but I'm neither authority nor consensus. Words and their meanings change whether I like it or not, but I can say that I think the concept of autism has been stretched to cover a range of different and unrelated disorders, such that it's become useless as a descriptor.

Autism is just a word. We can believe words mean one thing or another, but it's what they mean that matters. I've spent my whole life trying to figure out why I'm like this, but there are lots of reasons, lots of explanations and ways of diagnosing the problem. In the end, what matters are consequences. Whether we're too hard on ourselves or too forgiving, we have to face a world that doesn't give a shit one way or the other. We have to make the most of the reality of our lives, regardless. What we think only matters in so much as it effects what we do.