April is Autism Awareness Month, so I thought it was about time I had a coming out of the closet (no – not that closet!) party for myself. Simply put, I have Asperger Syndrome, a pervasive developmental disorder closely associated with autism. To some of my peers and colleagues, this may come as a surprise. Others may have seen it from a mile away (as one told me when we were talking about this a couple of weeks ago). For most of my adult life, I have tried to hide behind a facade of being neurotypical, but I have finally come to terms with this enough to openly talk about it.
My History As An Aspie
The term Asperger Syndrome was not coined until 1981 (despite initial research being conducted nearly 40 years prior), and the diagnosis was added to the DSM IV in 1994. As a result, I was a freshman in high school before there was a category for my behaviors and social difficulties. During elementary school (in the 80s), you really fell into one of three categories: hyperactive, retarded, or “get over it.” Autism at the time was considered a form of mental retardation, and you had to be pretty low-functioning to be labeled as autistic.
Since then, more study has been conducted on the broad spectrum of autism and related conditions – referred to as pervasive developmental disorders (PDDs). Unfortunately, this work was of no benefit to me as I struggled emotionally with the difficulties of my condition; I was the weird kid, a target for bullies, and a loner. I found more solace in my collections than in other humans. Mind you, this is not meant to create a heart-wrenching drama. I’m just putting things in perspective.
I became what seemed to be a very self-absorbed adolescent, which is a common perception of many individuals with AS. Friendships were rocky and short-lived. I absolutely could not handle rejection of any form, and I was slumping into deeper and deeper depression as I entered high school. I was a complete and total mess. I would even make up elaborate lies about my health or some other aspect of my life in order to create some kind of connection (even if it was a fraudulent one) with my peers.
Then something happened. My sophomore year in high school, I began emulating behaviors of individuals I felt were socially successful. Over time, individuals like Ben L. & Kevin S. at church became social role models (though they were unaware of their status), and I learned my facade – a facade I still implement to this day when I am in social situations. Internally, I was still a wreck, but I could talk a good talk, and that made school easier. My last three years at high school were great, and I even met my wife during this time period!
Interestingly enough, it was Crystal who, while majoring in psychology in college, first brought up autism as a possible explanation for my bizarre private behaviors – rocking ceaselessly, finger biting, repeating phrases, seemingly unpredictable outbursts, aversion to spontaneity. However, I had not experienced a language delay (one of autism’s defining characteristics), nor did I seem to experience the physical seizures that sometimes accompany the condition. In contrast, my linguistic abilities as a child were quite pronounced, and I often read books far above my grade level.
I had been teaching for a year when I met a child who could have been my clone. Physically, emotionally, and socially, this child was me all over. He was a fifth grader, and his teacher (the talented and lovely Ms. Hill) was convinced he was autistic. His fourth grade teacher (the equally talented but not-quite-as-lovely Mr. Hall) shared the same suspicions. However, his parents were extremely reluctant to concede to testing. Ms. Hill did not want this child to enter middle school without the proper services in place, so she was persistent.
At the time, I was mentoring this child, and I was making as many discoveries about myself as I was helping this child. If he was autistic, surely I had to be. We had a very good bond, and his parents were quite fond of my involvement with their son. Consequently, in mid-Spring, I sat down with his mom and dad and spelled out the fact that there was a good chance that I’m autistic. Their son was a carbon clone of my former self, and they would be doing him a disservice by not having him tested. They agreed.
When the test results came back, autism was not the label. Asperger Syndrome was, and, at last, I had my diagnosis. AS fit me like a glove, but I remained very private about it, confiding only in a handful of associates. I even kept my direct supervisor out of the loop until March of this year (and I’ve been employed in the same place for five years now). You see, I was grateful to finally have a clear picture of myself, but I’ve been terrified of how others would react.
Behaviors & Workarounds
Many behaviors associated with Asperger Syndrome permeate my life, and, at home, these behaviors can be very pronounced. However, in public, I can usually temper them enough to avoid looking too strange.
- Talking to Myself. Let me set the record straight: I’m not actually talking to myself. I’m holding a hypothetical conversation with someone who’s not there. For example, if I’m thinking through a problem regarding helping a child read, I may pretend I’m talking to one of our literacy coaches, and I try to verbalize how I think she would answer my questions or constructively criticize my ideas. Most of the time, I can avoid doing this when people are around.
- Self Stimulation. “Stimming,” Stereotyped behaviors, what ever you want to call them – I can avoid most in public except for the rocking. I usually just pretend I’m cold – which I often am anyway, but it has nothing to do with the rocking.
- Echolalia. This has always been sporadic. I’m much more likely to repeat myself than I am to repeat you. If I do repeat you, I’ve learned to turn the voice inflection to sound inquisitive. It’s like the old joke about psychiatry: turn the last word of your patient’s last sentence into a question, and you sound interested.
- Eye Contact. I’m looking at the bridge of your nose or your eyebrows. Most people can’t tell the difference.
- Literalness. I still have struggles with this. I answer rhetorical questions. I take sarcasm seriously (though I understand how to use it thanks to Peanuts). I’m pretty good at noticing idioms and figures of speech when they are used, but that doesn’t mean I necessarily know what they mean. My wife finds endless amusement in this fact, and my reaction to the first time I heard the phrase “Quit Cold Turkey” is a running joke around our house.
- Emotional Vacancy. I can emulate the proper voice inflections and facial expressions for most emotions. Empathy is still a major challenge to demonstrate. It does get on my nerves when the term “emotionless” (or something similar) is used to describe AS. We experience the very same emotions you do. We just express them differently, and we have as hard of a time reading your emotions as you do ours. It’s not a lack of emotion; it’s a lack of nonverbal communication interpretation.
- Meltdowns. I prefer the term “social seizure” because that is exactly what these feel like. I can usually defer these when others are around. In other words, I can put it off until later. Usually, I become very quiet when a social seizure is about to hit, and I may seem completely non-responsive for a moment. Then, I’ll pop back to being engaged. I haven’t avoided the meltdown. It’s merely waiting in the sidelines until I’m alone. Noise is a huge trigger for me, and I’ve been accused by colleagues of going too easy on my classes when they become rowdy. The truth is that I am trying so hard not to inappropriately overreact that my behavior swings to the polar opposite. This is actually a huge area of challenge for me working in an elementary school, and it is the sole reason I seldom accomplish much during my prep periods.
I could really go on ad nauseam here. Really, an individual with Asperger Syndrome may have deficient coping skills, but his self-help skills are in tact. Once I figure out that a certain behavior of mine may seem odd to peers, I can usually find a way to mask it. Please understand, though, that this does not mean I have eliminated the behavior – I can only keep my act up for so long. Sometimes I do social seizure in public. Sometimes I do stare at the floor while talking to others. Sometimes I do pick at my face or chew my fingers in public. My seemingly outgoing and personable facade is just that: a cover. It is an act that takes concentration and energy to maintain. Some days are easier than others.
The Trade Off
Do I view my condition as a disability? Yes and no. Socially, Asperger Syndrome has leveled a heavy price in my life. I have few close friends. Many of my peers view me as eccentric or strange, and I do not fit in well during social events. I have a hard time engaging others in conversation, and I am much more likely to eat at a table by myself than I am to approach others or be invited by others. I come of as a trifle self-centered because I will try to steer conversation to topics I am interested in – topics many others find dull or tedious. No matter how many people I am around, I am still very much alone.
On the other hand, I am very smart. However, I do have a hard time broadly applying acquired skills and knowledge. I was reading Beverly Cleary & Judy Blume at six and Tom Clancy & J.R.R. Tolkien by the time I was twelve. In middle school, high school, and college, I would test very high in math, even when being tested on material for which I had never received formal instruction. I just “get” computers. One could say I like computers more than most people (by which I mean, I like most computers more than I like most people). I hold my own when watching Jeopardy, and I’m better at Double Jeopardy than the first round; Old Testament names give me very few problems; I am a Scrabble freak.
In other words, Asperger Syndrome is really a trade off. My IQ hovers around 130-140. On the other hand, my unaltered EQ is probably <80. (I say “unaltered” because I am quite capable of acting like an individual with a much higher EQ for a few hours at a time.) What I’ve lost in one area of my development I’ve made up for in the other.
So there you have it. I’m outed, as the saying goes. Hopefully this entry helps you understand me a little better, and I will continually try to find ways to improve my methods of handling my condition. I have no desire for a cure (if such a thing is even possible – a discussion for another post), and medication of any kind is very aversive to me. AS is part of who I am and part of my individuality – something I do not want stolen from me. Asperger is my buddy, and, now that we’re all acquainted, I hope we can get along.