Monday, March 29, 2010

On "Being Normal," and Temple Grandin

One of the more difficult things about having Asperger's is the struggle to "look normal."

It can be hard when you try to do everything you can to "be normal," to act normal, to look normal, and you know that you can't. That you're going to come across as different no matter how much attention you try to pay to slowing down the way you speak, speaking more clearly, keeping your body more still and not fidgeting as much. You'll still have "that look" to you.

I wasn't really clear on how I must look from the outside until I watched the Temple Grandin HBO movie from February 2010. It is the story of an autistic woman who grew up to revolutionalize the way cattle are handled and slaughtered, finding more humane ways to do so. The movie perfectly captured her wide-eyed expression, her anxiety and over-reaction to sounds and sensory stimulus around her; the way she carried her body, the way she couldn't modulate her voice, the rapid pace at which she spoke, the enthusiasm that she had at topics that interested her, far more than it was socially "normal" to express.

She knew what she wanted in life, and she was frustrated at the barriers to access; both as a woman in a male dominated field and as an autistic person. But she could think outside the box; she kept trying until she got what she wanted. Temple Grandin is an inspiration to everyone, autistic or not.

The part that is relevant here, though, is that there is a definite way that an autistic or Asperger's person comes across. The body language and facial expressions, of course, are completely off. The body is usually stiffer and not relaxed. The eyes show anxiety or terror no matter how much the person tries to smile. The timing of the sentences comes out wrong if the person tries to make conversation. It seems that you can fake normal all you want but it never quite works. In the end, you have to find people who accept you for who you are, quirks and all, not people who will simply tolerate you or hang around you as long as you keep trying to be "normal."

No quality of life can be had by pretending. In the Temple Grandin movie, Temple was lucky enough to have mentors and other people who accepted who as she was and worked to expand her mind and mental abilities, even if she was a little socially off. Every autistic person needs support like that.

Temple's character says something like, "I know that I have problems understanding some things, but I still want my life to have some kind of meaning." To me, that was the crux of the film, and of Temple's life. She had the drive to work around her struggles, to learn how to overcome her issues enough to be able to do the work she was good at. She changed the way the cattle industry handles cows. She gave hope to millions of autistic people and their parents. I think she succeeded in her goals.

I have always said the same thing. Problems or no problems, my life has to have some kind of meaning. I can't live an empty life. I'm not the kind who can slack off watching TV all day and be content to live on a government allowance. Everything I do has to have meaning and purpose, and if it doesn't, it has to be geared towards something that will have meaning in the future. One of my biggest frustrations in life is not being able to do more, not being able to participate in the world in the ways that I would like. Not being able to make a difference in the lives of others. The only tool I have is my writing, and I try with everything I have in me to make that count for something. I will, like Temple, work to find the day when I will be able to give more to the world.

Until then, though, I find interacting with people my own age very difficult. Older people, in their 40s, 50s and beyond, seem to have a way of interacting with those who are different that makes you feel, well, less different - puts you on the same level as them, almost. Not all, certainly, but a large percentage of them.

They have a way of putting a person at ease, and making the conversation about whatever topic is at hand - current events, skiing, the dinner menu, the weather, a book you just read - rather than a judgement on the way you express who you are. They are, in a word, often more mature, more accepting and have seen more of the world; they have come to terms about certain things about themselves; and they have a different view of an awkward young person trying to get along in the world. I hate to make generalizations, but it is entirely possible that most young people have so many insecurities about themselves and their place in the world, which they are trying to hide, that they cannot bear to be with someone who expresses these fears and insecurities so openly.

Not all young people are like this, of course, and occasionally, I have had people express their vulnerable side to me. Their emotional, "I've had experiences like that, too" side. They talked about difficulties they had had with people or getting along with the status quo, trying to figure out who they were; they talked about what they wanted to do with their lives. I could relate to these people then, and felt more of a sense of connection. But in everyday life, it seems, most people put up a shield to hide their vulnerabilities. They hide a part of themselves, and almost create a persona that they present to the outside world.

This is something that is very foreign to someone with Asperger's. With AS, what you see is what you get. We have a hard time hiding any part of ourselves. Deception is a concept we can't grasp. We can't be anybody but ourselves. We say what we think, we say what we feel, and we do things we are interested in or enjoy even if it goes against social norms. We are honest and literal and see the world in black and white, and we have a hell of a time trying to understand why everyone else is not that way, too.

Others see us as intense. For many of us, it is not that we don't want social interaction or that we're not social; instead, the problem is that we want to connect on such deep levels that others are scared off. This isn't to say that people without AS don't desire deep connections, too, but they know how to "play the game" to get it. They know how to go through the small talk, the "sussing out" that comes when two people are starting to get to know each other. They have a feel for the general behavior expected, and how to "play the game" to eventually build the kind of relationship or friendship they want.

People with AS, on the other hand, often throw themselves on someone like a bull in a china shop. They are not aware of all the social nuances that exist when one person interacts with another; and if they are aware, they have no idea whatsoever how to mimic them.

It's like an unwritten language; to decipher it feels about as likely as going to the moon. So people with AS use what they have instead; sometimes, they are hurt by the outcome, and other times, they get lucky and find another kindred soul. I have found that social interaction is all about trying, though, and realizing your boundaries; what you will and won't be able to do; what you are and aren't willing to do. Not expecting yourself to be able to create miracles at a party or feel included right off the bat anywhere.

As far as I can tell, it is about being patient, taking what you can get, and keep trying in different venues until you find someone you can connect with, without too much effort; because life is too short to feel like you are scraping your fingernails against a figurative chalkboard every time you want to have a conversation with someone. Of course, it's also about having enough social intelligence to realize what the other person's boundaries are, too, but that takes time and experience, and is something that most people with AS find quite difficult. You learn; I'm not saying having AS is an excuse not to; but it just takes time.


  1. In some ways I think it is a blessing to not be able to seem normal. I think most "normal" people spend alot of time working to keep what they fear others will see and reject them for inside. If you can't hide it you have to accept it and others get the chance to accept it right away or not and you know before you invest too much in that relationship.

    The things about me that people can not tell from talking to me are harder for me than the things they can tell right away.

  2. What a thoughtful essay. Thanks for writing it. You've given me new insight into the lives of people I know at various places on the autistic spectrum.