Monday, June 11, 2012

I Didn't Have Aspergers

When I was young, my parents knew I had social problems.  The school counselors and my teachers were worried about it at one point--how worried, I don't know.  I don't remember being one of the kids that had to leave class to see the counselor on a regular basis--I was only pulled out once or twice.  My parents have let it slip over the years that they were approached about "some kind of social issue" but that since the school never had a real name for it, they just decided to wait and see.  Eventually, when I started to participate in Cub Scouts and Little League, they decided that I was just a late bloomer.

Since my diagnosis, my mother has admitted that she knew I had some kind of sensory processing disorder when I was very young, but that she thought I had phased out of it when I stopped throwing temper tantrums.  Apparently, I used to begin screaming and become completely unapproachable when there were too many people talking, or when it was too loud, or when I was asked to do more than one thing at a time.  Of course, once I learned how to stop myself from screaming uncontrollably, these issues were not worth pursuing.

In both of these cases, no one checked to see whether or not I was actually understanding and adapting, or whether I was just suppressing the anxiety until I was alone, and then letting it loose.  The scars on my arms and knuckles and the holes my father had to patch in my bedroom walls when I moved out tell the rest of the story.

But I didn't have Aspergers.  I do now, but I didn't then.  Let me be clear, I had:
  • Sensory confusion
  • Anxiety
  • Problems understanding the meaning of others' actions/expressions
  • Self-injurious behavior
  • Accelerated intellectual development with no accompanying understanding of the motivations of others
But I did not have Aspergers.  In fact, at the time that my parents and my teachers were trying to figure out whether I was in need of special education or in need of an advanced education, no one even considered autism to be an option.  It's not that these were stupid people.  It's just that I couldn't be autistic.

Because I could talk.  Because my intellect was normal.  Because I was not "infantile".

Because it was 1987.  Aspergers would not be considered a "real" disorder for six more years, and six-year-old Mike was just an odd kid who would need to grow into his body.  In fact, at this point, you had to be seriously uncommunicative before you were considered autistic.

Because of course it was the fact that my parents were so young that made me develop oddly.  It would smooth out as I was exposed to other kids from more "traditional" backgrounds.

Because if a child can read before he starts first grade, it's ridiculous to think that he might need special education.

I was treated as if everything that was "off" about my behavior could be corrected out of me.  They trained me very well to the institutions that they put me into.  I made it through school with good grades, and I participated in accelerated coursework to graduate early.  I managed to stay active in Scouting until I was 15, and I even served as the Senior Patrol Leader (highest youth leadership rank in a troop) for a year.  I tried out sports.  All of these things gave me the appearance of socialization, and I learned that that appearance was necessary to avoid "harassment" (i.e. behavioral correction) by my parents/teachers/community leaders.

I also dropped each of these things as soon as I aged out of them.  Scouts when by the wayside the minute I could use getting a job as an excuse.  I concentrated my schoolwork so that I could graduate early, because I found the presence of all of the other kids unbearable.  I dropped sports.  I dropped band because I did not understand the way that it would work at the high school level, and I was too embarrassed to ask.  I got to college, and I found I was free to sit alone in a room and read for fourteen hours a day, and once I started that, I also dropped all of the "friends" that I had made.  After all, they wanted time I could have spent reading.

But don't be confused--I didn't have Aspergers.  At least, not until I was 28.  At least, not if my medical records are what we use to define "having Aspergers".

Instead, I had a behavioral problem.  That was what my father and my mother decided.  They became happier as I learned to put on a better appearance of normalcy.  Once I was out of their house, my nature was the same as it ever was, and I was free to be myself.

And I backslid.  Because I could.  Because I was drawn, inexorably, to act according to my nature.

I've been reading a lot about autism as a behavioral issue lately.  I don't necessarily think it's wrong to treat some of the symptoms that way, because I would not be employable today if I had not received the behavioral corrections that I have.

I do know, though, from experience, from every experience I have every had, that changing the outward behavior does nothing to change instinct, inner phenomenology, or natural inclination.  You can't behaviorally modify me out of autism any more than you can behaviorally modify someone out of being gay.

I have the scars on my knuckles and the holes in my walls to prove it.

For a narrative experience of "not-autism" before Aspergers was recognized, check out the short stories here and here.  If you want more, the novel version of Nothing is Right will be out September 1.  It's fictional, in that not all the names and events really happened, but it's also true, because it really felt that way.