The Illusion of Inconsistency

In general I would say that I have a "good" life, meaning that I enjoy being alive and have been very fortunate in some respects. I can easily find things to delight in, and I am constantly seeking information about the incredible and endlessly complex world I live in.

However, this does not mean everything is easy for me all the time. In fact, a lot of things have tended to be extremely difficult. I've tried to deny difficulty at various points in the past, but invariably this has led to my experiencing a dramatic and unignorable "crash" or other crisis which has necessitated a major rearrangement of how I'm doing things.

My guess is that very, very few people (maybe three or four at most) have an accurate perception of what my life is actually like, and what was like for me growing up. These individuals seem, for some reason, capable of seeing me as a complete person, and hence don't see my "min-maxed" skill set as particularly bizarre or somehow suspect.

But among people who don't know me very well (which is to say, most people), there's a pretty consistent reaction of surprise if I do something to break whatever image it is they've formed of me. And...while some amount of confusion is understandable, given the human tendency toward applying heuristics to categorize people quickly, there's a point at which I think people are responsible for checking their misconceptions.

This means that if someone who seems a decent engineer discloses that they're autistic (or otherwise disabled) to you, you don't say something like, "Oh, come on, do you really want to think of yourself as disabled?" While this kind of reaction may be an attempt at complimenting the person, in essence the message it actually sends is, "I don't feel like updating my picture of who you are, no matter how you might be affected by that".

It also means that, if you find out that an autistic person has been in "gifted" programs, or accelerated classes in some areas, or something along those lines, you don't presume that this person can't possibly have any significant difficulties. Being autistic doesn't categorically preclude being in gifted programs any more than being blind or gay or female does, despite historically small numbers of all these groups being included in such programs.

Here's a picture of me in sixth grade, on a trip to New York City.



That year -- sixth grade -- was probably the worst of my entire elementary education. School had become sufficiently abstract such that I could no longer rely on my memory and pattern-matching skills so much; my grades were dropping, and I couldn't explain why, and I was terrified that I was "getting stupid". Meanwhile, the demands of being twelve were much greater than the demands of being ten and eleven had been, due to the usual physical stuff that happens around that age, and I was finding I simply couldn't keep up.

One consequence of this was that I went around pretty unkempt a lot of the time. My hair usually wasn't washed or brushed (because I was expected to be doing these things myself by that age, only I hadn't picked up those skills nor the capacity to plan to do them regularly or frequently enough). Other kids thought I was "gross". I didn't know what they were talking about. Eventually, though, the teacher pulled me out into the hall and demanded that I "grow up and learn to change my clothes and wash". I was shocked by this. I hadn't even realized there was anything untoward about my appearance until that point.

I'd liked the above picture up until that day, the day my teacher yelled and my parents got called and I got lectured for academic and "behavior issue" stuff in addition to for my abysmal self-care skills. After that day, though, I hated it. I suddenly, having been jerked and jolted into raw self-awareness via humiliation, saw that picture and saw not a kid actually having fun looking at stuff on an interesting field trip, but a kid with giant ugly glasses and hair hanging down in dirty, matted sections. It was preposterous that that could be me. And yet it was. And I had no way to explain why or how I was "like that", or why I hadn't noticed so much wrong, or why I couldn't seem to keep up with most of what people my age were "supposed" to be keeping up with.

I was in the gifted class that year, yes. I also went to the Resource Room (where kids with LDs and other issues went for "extra help"), colloquially known to my classmates as the "retard room". I wrote seventeen-page science fiction stories when the assignment only called for a minimum of two pages. My parents started helping me wash my hair in the sink, and there was talk about soap and how many times I could wear an outfit in a given week.

Below is a picture I took in New York City, while on the same trip as in the previous photo.



My favorite part of that whole trip was looking at all the neat lines and angles of the buildings, especially the shiny ones. This scene struck me as particularly interesting because it showed a more ornate, older-style building reflected in the surface of a shiny modern skyscraper. I took the above picture with my mother's camera, which I'd borrowed briefly.

It's a decent picture, as far as such things go. I know this now, as an adult, because I've seen a lot more photography and critiques thereof. I've chosen to display it publicly because I like it, but I've also chosen to display it here, alongside a photo I used to want to burn, because I've realize how strong the drive can be to only present or even acknowledge one side of a person.

When I was growing up it often felt like I was being told that half of me was "the real person", but the other half wasn't. That it made logical sense for me to be either a "smart kid" or a kid who had some trouble learning self-care skills, but not both. Or sometimes even that it made sense for me to be a "retard" but not someone who might be able to win the spelling bee or draw well.

It was as if people were enraged more by what they saw as "inconsistency" than by the actual thing, whatever it was, that happened to be bothering them about me. I was supposed to be one thing, but failed to be wholly that thing, or wholly any other thing, and this wasn't allowed. Either I was "ruining" the worthwhile person I "could" be, or I was, in my non-worthwhileness, encroaching on the territory reserved only for beautiful popular tidy kids. Kids who looked and acted like me weren't supposed to win anything or be good at anything, and kids who ever won or achieved something clever didn't have the problems I had.

But regardless of what was "supposed" to be, I was what I was, and that was a kid whose existence did not in any way, shape, or form contradict itself. Nor does the existence of any other person, autistic or not, whose skills happen to fall along atypical patterns, contradict itself. Ability and disability and commonality and difference are all equally real, and can coexist in the same person as they coexist in humanity at large. And the sooner more people realize and internalize this, the more inclusive and civil our society can become.