Monday, March 29, 2010

Accepting Asperger's

This is an essay on Asperger's I wrote shortly after I was diagnosed, about five years ago.
I think I may have gotten it published in a magazine in 2007 but at this point I don't even remember for sure, lol.

101 Uses for Body Lotion

Bleeping horns. The sound of someone eating an apple. A ticking clock. Hurried conversations. All around us, in every day, we are subjected to a barrage of sensory messages that most of us ignore without even thinking about them. Every day, most of us interact with the world around us without giving much thought to how we are doing it; it just comes naturally. This is not, however, the case for the person on the autistic spectrum. Specifically, for the person with Asperger’s Syndrome. Asperger’s Syndrome is a very high functioning form of autism that was not officially recognized and put into the DSM-V until 1994. There has been a huge lack of public awareness and knowledge of this disorder, although it has gotten more attention in recent years. As a result of this knowledge gap, many kids, teenagers and adults are walking around every day carrying feelings of extreme isolation and difference from those that surround them but never quite knowing why.

I have been one of these people. I am twenty one; a college senior at Goucher College in Baltimore. I have a 3.7 GPA in my college and always did well in school, but all my life I have lived with the knowledge that something was “different” about me, something I couldn’t quite figure out. I kept to myself as a kid. I entertained myself and lived in worlds I created for myself. I was happy enough until about the seventh grade, when an unsettling realization hit me. I realized for the first time that I had no friends. I had never had any desire for them before, but I wanted them now.

I observed other people pairing up and doing things together. I noticed them talking and laughing and walking to class together. I suddenly felt lonely. For the first time in my life, I wanted friends. But I had no idea how to get them. I had always regarded people as targets to avoid, inscrutable objects that could be potentially dangerous to me. Now I felt a desire to relate to them. It seemed, though, that I did not speak the same native language as them. I had no idea what to do with them.

I was the target of quite a bit of bullying and harassment my eighth grade year. I shrank away from people much more after this. Still, I wanted friends. In high school I got my first taste of this. My junior year and senior year, I was befriended by a few girls from my classes. For the first time in my life, I experienced what it was like to Â“hang outÂ” with people, to go to their houses or just have conversations with them. Despite these burgeoning friendships, though, I still felt troubled. I wanted to know why it was so hard to make friends with my peers. I wanted to know why I still felt so isolated, like there was a thick wall between me and other people. I had a pretty good life: I had things I was interested in, people to talk to when I wanted, a family that loved me, all the things I could really want. But I became more and more desperate to find out the answers to the question of my differences that had always plagued me.

I wanted to know why I didn’t dress the same as others my age, always placing comfort high above fashion. I wanted to know why I didn’t have any of the same interests as my peers and why “friends” seemed to be like the seventh class in my senior year schedule. All very intangible things, and I was reassured over the years by therapists, guidance counselors and family that there was nothing different about me, that I was just like everyone else. That I was maybe a little anxious around my peers but that IÂ’d find friends. All I had to do was meet people with similar interests. I knew this wasn’t true. I knew that I was different in some essential way, some way that I had absolutely no words for but that I felt in the deepest recesses of my heart. I knew it in the way that I felt so cut off from people – the feeling that no matter how many interests I shared with a person, we somehow had two completely different ways of communicating and would never be able to connect on the level that I needed. People tried their hardest but nobody had any answers for me, so I learned to cope. I shut out the outside world as much as possible and learned to take pleasure in my own world, in things that I found enjoyable.

The schism between the way I experienced and related to the world and the way that all of my peers experienced and related to the world kept growing and growing, and I felt more and more torn. I wanted desperately to be a part of the world around me, but found it so difficult, so cumbersome. It took so much energy. It was so much easier to retreat into my world. Yet, I knew this would lead nowhere I wanted to go; the isolation was becoming unbearable.

And then, at age 21, I learned of Asperger’s Syndrome, and for the first time in my life could fit my behaviors and way of experiencing the world into an already established pattern. I fit somewhere. There was a perfectly logical explanation for my difficulties. Now, instead of spending all my energies trying to shut out a world that did not understand me, I could find a segment of the world that did. I could start to forgive myself for all the transgressions I had so painfully made over the years without knowing why. I could find other people who "spoke Aspie.”

Thinking back over my life up until now, I am amazed by the sheer amount of effort those with AS must make just to get through each day, by the amount of coping techniques we must intuitively come up with and practice. We are bombarded every day with so much overwhelming sensory information. Our clothes are too tight, making eye contact can literally hurt, the sounds of everyday conversation, of a clock ticking or someone tapping a pencil against the desk can drive us out of our minds. Certain smells can overwhelm us, the lights are too dim or too bright, we just don’t feel comfortable in our bodies. It’s very hard for us to actually relax, because there always seems to be a threat lurking somewhere.

Every interaction we have is like solving a five hundred piece puzzle before the time is up. When we see a person we would like to interact with, first we must decide if we have enough energy to go through with the interaction. Whereas a large segment of the population gets energy from interaction with others, for us it can be sometimes dangerously overwhelming and depleting. It is like a forbidden fruit that we would like to enjoy but must weigh the consequences. Then we have to figure out, often in just a few seconds, what we’re going to say and how we’re going to say it and try to double check it before we say it to make sure, to the best of our knowledge, that it might be something that could flow reasonably into the conversation. We have to call up old scripts and decide which is most appropriate for the situation. And on top of all that, we have to make it sound as natural as we can.

If you were a native English speaker with some background in the French language, and you spent a month in France, you would find yourself trying to translate your thoughts in English to French before you spoke them. This is very similar to what happens when an AS person must talk: they have to translate their Aspie way of thinking to a more neurotypical format. This can be a difficult task if you don’t know the language well; slip-ups are bound to happen. It ends up being a very time consuming and exhausting process to continuously go through.

When I was growing up, I constantly felt like I was speaking a different language from everyone around me. I would have such a hard time conveying what seemed to be the simplest of things, and felt like I was constantly being misunderstood. What a relief it is later, then, to find in so much of the literature on Asperger’s those same very words: “People with Asperger’s speak a different kind of language than their peers.” This is, of course, due to the fact that we do not understand nonverbal language. We do not pick up on those small signals, those nuances in the way you say words that are supposedly meant to carry so much meaning. We wonÂ’t see the reassuring look in your face because we can’t read your face. We only hear the words. When we talk, we might over-explain something due to the fact that so much of what people take for granted as being understood, we have no way of knowing is understood; we are awkward and clumsy because we are trying to put words to emotions and feelings that most people are able to communicate nonverbally.

We are creatures of habit and have a great need for structure and routine; disruptions in our routine can wreak havoc on us. There are so many things that can make us feel off balance and it can be very difficult to recover from this. I think the hardest thing for me as a person with AS is the feeling of always being on the edge. The feeling that yes, I’m coping now, but at any minute I could loose my hold and become completely overwhelmed by the world around me. This is terrifying in so many ways and something I deal with so much every day. I try to structure my days and my routines in such a way that I feel as calm and stable as possible, and I am always making sure I am engaged in some activity or another so that I give myself as little chance as possible to succumb to the terror of the unknown – but it creeps up on you during every down time that you have, and you fight it as best as you can, promising rosier visions of the future, promising that there will come a time when you aren’t so scared. You learn to focus on the one or two things that made you happy in any given day and fixate on them, hold on to them for as long as possible, using them as your reason to keep fighting.

There are many little things we do to cope with all of the pressures we feel. I personally carry lavender lotion around with me everywhere; I find the scent and feel of it calms me down when I’m approaching an overload quicker than just about anything. The feeling of water against my skin is also a stimulus that is very calming to me. Recently I’ve figured out that water fountains tend to have much colder water than some public sinks, so I’ve taken paper towels and put them under the spray of the water fountain to make them as cold and reviving as possible. There are so many little things like that that we notice that no one else would, so many things that we must intuit to do to help ourselves function in this world.

So many people are apt to pass off people with AS or any of a number of other disorders as somehow less intelligent or someone not worth getting to know. If they’re clumsy socially, they must be clumsy mentally, right? But the fact of the matter is we have to be quite intelligent to figure out a way to deal with the foreign world in which we live. At any given moment, we are planning out everything that will happen the rest of the day so that we are not taken by surprise by anything. We are thinking ahead to try to figure out if a proposed activity will be safe for us and not contain too much sensory overload; we are figuring out how much downtime we need to program in to anything we schedule ourselves to do.

I explain all of this just to give the average person an idea of what it is like to live on the autistic spectrum, and especially an idea of what it is like to live there without knowing about AS. While it is a struggle, it is not an impossible one. There are benefits that go along with it, too: the ability to remember large amounts of information related to your interests which could be helpful for those who manage to get a job in a field of interest to them; the ability to focus single-mindedly on a task to get it done; and a great deal of honesty, loyalty, and perseverance. AS employees are much more likely to stick to the rules and do exactly what you have told them to. People with AS won’t tell you one thing one day and change their mind the next; they are unfailingly honest. They’ll tell you what they mean; you wonÂ’t have to play guessing games with them.

It is only by learning about each other’s struggles and challenges and really trying to understand them that we can build a world that is safe for everyone to live in. A world where its inhabitants don’t have to live in fear of being different, but can instead embrace it. A world where we can truly grow and improve because we are taking advantage of everyone’s strengths, not just the strengths of a selective few. That is the kind of world that I want to live in. It’s the kind of world that we all want to live in.

1 comment:

  1. From the blog, "I think the hardest thing for me as a person with AS is the feeling of always being on the edge."

    Perfect. I feel like I'm always one small step away from being homeless, crazy, whatever.

    I don't have a medical diagnosis of Aperger's, just an online test that I've done that spoke to me. Described so much of my life.

    Interestingly enough, it was a link I got from a Yahoo Group for prosopagnosia, Face Blindness, something else I have.

    Peter Haynes
    L'Amable, ON