9 June 2004: Autism

I'm Autistic.

I don't talk about this very much; there are many people who have known me for years and are unaware of it. Part of the reason for this is that I haven't always known what it was; it got misdiagnosed as all sorts of different things over the years, everything from ADD to Tourette's, and I just got tired of trying on different labels that never quite fit. It wasn't until just a few years ago that new research made the correct diagnosis possible - before that, it wasn't generally recognized that it was possible for an autistic to be as high-functioning as I am.

I also confess that I've skirted the issue on occasion - for instance, in making reference to the Autistic quirks in my body language, even in this journal, I've disingenuously described them as "Tourette's-like," or implied that their origins are complex or mysterious. I've talked about my childhood autism as if it's something that just went away.

Highly suspicious behavior. Am I "in the closet" about my Autism?

Not anymore, apparently.

Niyabinghi, a delightful person whose journal I follow on LiveJournal, posted an entry yesterday about her own Autism, which touched off an extensive and fascinating conversation about it. I got involved in the conversation and ended up writing a bunch about Autism. And this morning I looked it over and thought, "This belongs in my journal." So here it is.

My involvement started when Old Cutter John, who was participating in the conversation, commented:

The first time I read the technical definition of Asperger's Syndrome, I said to my wife, who works as a shrink, "Hey! This could be me!"

 

But he said it in the course of explaining that he didn't think he had it, because what he had was so much less severe and pervasive than the extreme version of Asperger's described in the DSM-IV. But the info on Asperger's in the DSM-IV is outdated now, due to the extensive research done in the past few years as a result of the Bay Area's childhood Autism "epidemic."

Ever since I found out that Autism is what I've got, I've known that Old Cutter John has it as well (it's genetic, and he's my dad). But it hadn't crossed my mind to bring the matter up with him - I figured he either knew already or didn't care, because I knew he was familiar with diagnostic tools like the DSM-IV... but of course I hadn't been taking into account how recent much of the relevant research was, and that I only knew what I knew because I'd just spent three years doing assessment work with the affected population.

So I joined the conversation, to tell him what I knew:

You're Autistic, as am I. It's genetic. I recently spent three years working with and around children with various neurological peculiarities, including many Autistics. I read up on the recent research, and talked to colleagues who were well-versed in the subject, but even without such confirmations, just interacting with the kids themselves was enough to make it obvious that my brain worked the same way theirs did. My promotion to a position managing intake assessments and training others to do them was largely a result of my ability to establish rapport with supposedly "unreachable" Autistic kids.

I'd been trying all my life to figure out what was up with my brain. It's been diagnosed as so many different things, from emotional disturbance to ADD, but Autism is the only diagnosis that's really seemed to fit properly (recent Autism research has caused many alleged cases of ADD to be re-diagnosed as Autism).

There's currently an epidemic of Asperger's in the Bay Area. People with Autism often have an exceptionally high aptitude for computer programming. During the dot-com boom several years ago, a huge number of them moved to the South Bay and ended up starting families. Adults with Autism tend to have kids with Autism. The adults who are functional enough to build careers and start families are, of course, the ones whose Autism is fairly mild, like ours. However, an adult with mild Autism may also produce a child with much more severe Autism.

So right now there are a whole lot of well-to-do computer programmers, all living in the same part of the world, who for the past decade have been having kids with mild-to-severe Autism. Which means that there's a whole lot of Autism research going on out here lately, and a lot of information more current than what's in the DSM-IV.

It's now recognized that Autism occurs in a full spectrum of gradations, from "eccentric genius who comes across as slightly obssessive-compulsive or something" to "completely incapable of functioning in the everyday world." It wasn't until the current local epidemic, and the resultant wave of (post DSM-IV) research, that these two groups were recognized as having different levels of the same syndrome.

Good article at: www.wired.com/wired/archive/9.12/aspergers_pr.html

Niyabinghi asked if I was still working in that position. Many of my friends and regular readers already know the answer to that one:

No, I'm a full-time college student pursuing a Psychology degree. I couldn't abide being told how to do my job by people who didn't understand the needs of the kids as well as I did. Part of why I'm in school is that I decided that the next time I worked with kids, I wanted to have credentials that were impressive enough to buy me more autonomy.

In response to my mention of the rapport that my Autism gave me with children who also had it, Niyabinghi also shared this charming story:

Back before I discovered any of this in '99, was taking some education courses that required fieldwork in special ed. On the first day of a week at a particular school, this one autistic boy in this class came up, threw his arms around me and hugged me; the teachers pulled me to the side after and asked me how I "got him" to do that. I was baffled, I hadn't 'done anything'; they said that his parents had been trying to get him to hug them ever since he was a toddler, and never had. At the time, I just chalked it up to being that the kid intuited I was a just a goofy kid trapped in a so-called adult body and that's what he related to.

Which led me to share one of my own (it was realizing how odd and sad it was that I’d never shared this deeply touching incident with anyone else, that made me decide to write this entry today):

One of the symptoms of my Autism is that clothing that is uncomfortable or restrictive in any way seems to annoy me a lot more than it annoys normals. Whenever I purchase a new article of clothing, I cut off all the tags, because I'm so annoyed by the sensation of tags touching my skin - something normals don't seem to notice at all.

One day I was working with a 12-year-old boy who was functional from a neurological perspective, but who was so emotionally scarred that he was chronically hostile and suspicious toward everyone. I was wearing a button-down shirt over a t-shirt, and I'd taken the button-down shirt off. I got up to get something, and when I came back to my seat he was staring at the inside of the collar of the button-down shirt.

"You cut the tags off," he said.

"Yes," I said.

He reached out and touched my hand. "You're one of us," he said.

Niyabinghi then asked:

Aside from the label tags, do you have any other sensory processing problems that have interfered in your life?

To which I answered:

Yes, plenty of them... although the interference tends to be minor, especially these days.

The tendency to get into repetitive motion patterns can be a problem.

It doesn't seem to disturb people much that when I put down an object I'm holding, I'll sometimes pick it back up and put it down again a few times in rapid succession (the difference between Obsessive-Compulsive Disorder and Autism is that the Obsessive-Compulsive person believes that something terrible will happen unless the object is in exactly the right place or unless he picks it up and puts it down some magical number of times, whereas I do it on a reflexive impulse that involves no superstitious beliefs and no sense of fear). I'm fortunate in that I have enough natural charm that people tend to find my quirky movements more interesting than offputting.

Where the repetive patterns have been a problem is where they have the potential to damage my body. The worst one for me is the tendency, when I scratch an itch, to scratch more than I need to, to the point of tearing my flesh. To minimize this problem, I've developed the trick of scratching my face using friction, by rubbing the tip of my finger or the back of my nail over the itch as if I were striking a match on my skin, which has the same effect as scratching but doesn't bring the sharp part of the nail in contact with skin. I can do this fast enough to produce a sound like snapping fingers, which is a well-known quirk of mine (I've deliberately cultivated the trick of scratching my nose with this method in such a way that it looks and sounds like what I'm doing is "cracking" my nose the way people crack their knuckles - it disturbs many adults, but pleases children).

The eye contact difficulties have posed problems socially, but the fact that I'm more prone to register people's bodies as moving forms in space than as life-support systems for faces has proven to be a great asset to me as a martial artist. I have to meet a person several times before I can reliably recognize his or her face on the street, but I can walk through a barroom brawl without looking at anyone and know where every person's center of balance is.

It's difficult for me to process long speeches, even when I could easily process the same information if it were in writing.

And I intensely dislike passive-aggressive modes of communication, and never use them myself, even though I have learned by now how to interpret them. People who prefer non-literal communication tend to think me rude, and I tend to think them cowardly, dishonest, and untrustworthy.

For instance, it took me until about the age of 14 to figure out that when someone says, "Why don't you try it this way?" they mean, "Try it this way" (which is what I'd say), rather than "Tell me the reason that you don't try it this way" (which is the literal meaning of their wording).

I still find the "Why don't you try it this way?" style of communication so irritating that I often interpret it literally even when I know it's not meant that way, just to force people to think about their wording and to speak to me in a way that I feel is clear and honest.

How pleasing to have all that finally set down in writing! Perhaps it will provide some of the people in my life with some useful contextual information. It will certainly make it easier for me to mention my Autism in the future, because I’ll no longer be faced with the daunting task of explaining all of this.