I have always felt strangely drawn to children and people with autism. Somehow I just enjoyed being around them, talking to them. Through the years, I read everything I could get my hands on about this peculiar and often devastating condition. In 1991, I taught my first special education music class, and I was hooked Almost every year I seemed to have at least one or more special ed students in choir. At my last school for seven years I had singers in all my choirs from our school’s special ed class. It was thrilling to see how each of them grew as people and musicians during their years in choir, and how the mainstream students would respond to them.
Don’t get me wrong: I was by no means an expert. I was simply very interested and really wanted to help them grow as singers and people. This led me to try different strategies with my students, with varying degrees of success. There was no guaranteed fix, because they were, and still are, all very, very unique human beings.
I quickly figured out, largely by trial and error, that emotional subtlety just didn’t seem to work with students on the autism spectrum. That certainly suited me: my natural method of communication many people would criticize as “too direct.” I maintain that being “direct” always is more efficient and more effective than passive aggressive. Maybe my constant smiling is not only a reflection of my positivity, it is also a way of issuing a preemptive apology. Of apologizing in advance for anything upsetting that I might say in the very near future…
As the years passed, working with these students and incorporating them into the life of the choir became more and more rewarding for absolutely everyone involved. Especially me. It wasn’t anything extraordinary, it was just how the world should be.
And then, as all the stories in this blog say…a truck hit me. I awoke to a world of total fear. Faces didn’t make any sense, voices and words didn’t mean anything, I couldn’t sort out any kind of sensory input. Total confusion.
Over the days and weeks that followed, I began to find patterns. Little by little, I began to recognize my family members again, then to recognize my therapists. I began to relearn words, and then language. I learned to swallow and eat again.
After I came home I continued to have problems interpreting people’s facial expressions, especially those I hadn’t known well before the accident. I had difficulty “getting” jokes, reading social cues, and just handling everyday social interactions. I relied on my husband to tell me if someone was being funny, was angry at me, or just what the heck was going on.
In retrospect I suspect that my brain was doing the best it could with incomplete and confusing input. Interacting with people I had known well before, my brain was already familiar with how they would react to certain situations, so it could fill in the blanks much more successfully. In totally new “after accident” scenarios, my broken brain had no baseline of data to operate from. The information coming in often was skewed and incomplete or I was simply misinterpreting some things. This sometimes led to very, very painful misunderstandings of something that I had said, or done. These situations rarely came up with people I had known before. Something must be different now.
Almost 3 years after the accident, there is still a lot of that left. I make stupid mistakes occasionally now that I would never have made before. I was pretty emotionally sensitive before, but I misread situations often.
Another thing: when I first came home, because of my overwhelming all-the-time fear, I was faking every “normal” emotion at a desperate pace. I didn’t want to let down my family, who I felt had already been through so much all because of me. I faked happy, nostalgic, hungry, expectant, cheerful, excited. All I was feeling, underneath my drugged-up calm, was the constant low-grade buzz of anxiety. Sometimes breaking out into fits of outright panic and tears.
Until that summer we went to Shell Lake. Out on the kayak, I looked around me, and realized I was happy. Truly happy. I hadn’t felt anything but fear for so long. I didn’t recognize it at first….it lasted for quite a while. That is still a truly beautiful memory.
I’m not autistic. Autistic people are born that way. I had an accident that involved brain damage, and because of my years working with autistic students, I am thankfully able to recognize many of these traits in myself. I regularly check several wonderful autism blogs and websites, and am able to recognize symptoms in myself such as perseveration which I now wrestle with quite a bit. These sites fortunately lead me to lots of positive, proactive solutions for my newfound struggles. I don’t think I would have been able to so quickly recognize these problems in myself, and known where to go to find solutions, if not for the years of struggles that these kids and their parents went through. Because of that pain, so many of them chose to reach out to help others with autism. And, I guess, me.
I am really confused how to feel about this. I guess, in the end, it doesn’t really matter how I feel. It just is the way it is. I just have to accept what is and start looking for ways to move forward from here. Those are brave words to say, but sometimes difficult words to act upon.