Wednesday, March 11, 2009

Let's Talk About Asperger's Syndrome

Asperger's Syndrome is the label given to people with certain social characteristics. People who have some or all of the following: inability to read "social cues", inability to maintain eye-contact, a tendency to hyper-focus on whatever interests them, a monotone way of speaking, "lecturing" instead of engaging in conversation, and so on.

I come from a long line of Aspies - not diagnosed, mind you, but it's glaringly obvious. When I remark to people that I'm pretty sure I fall somewhere on the "spectrum", I invariably hear, "No - that's impossible. You're totally normal."


No, not really. I've just been smart enough to figure out how to cope. I've always watched everyone else's behavior and copied it. I can mimick other people's tone of voice, their gestures and facial expressions, when they laugh and how they act. I try them out in new situations and see what kind of response I get and go from there. I've gotten pretty good at it.

Another trick I've learned is that when I enter a new situation or move to a new town it really helps to make friends with one person who is popular and outgoing. These people inevitably come with a whole raft of other friends and acquaintences - way more than I would ever gather in my own slow, bumbling way - who will put up with me for that popular person's sake. I have always had these helpful friends - Catie in grade school, Julie in high school, Jennifer and Donna in my later years. When I haven't found such a friend to help me out - like during college or in my early parenting years - my life has been utterly lonely and difficult.

It doesn't help that I struggle with "face-blindedness" - the inability to recognize people's faces - another Aspie trait. Some people have it way worse than I do and literally cannot recognize a familiar face no matter how many times they see it. I'm not quite that bad - but I'm bad enough.

The first week I went to college, my roommates and I decided to host a party in our dorm room. We made up flyers and posted them around the dorms and handed them out randomly to all the other freshman who were wandering around campus. A lot of people showed up for the free beer.

I was nervous that night and I wanted to make a good impression, but I had no idea what to do. My friend Julie, who had been my social coordinator all through high school, now went to college in another state. I was on my own.

I made my way around the room introducing myself and trying desperately to make small talk. I couldn't think of a thing to say after I'd given out my name and the fact that this was MY room they were all partying in. Everywhere I looked people were laughing and chatting. What was everyone talking about? How did they know what to say? (Inability to make small-talk is a classic Aspie trait.) I kept circulating, trying desperately to find someone with whom I might click. Then came the final humiliation. I introduced myself to a girl and two boys who were clustered together, each holding a beer. They were obviously art students, with wildly dyed hair, multiple piercings and gothic clothes. Likely candidates for interesting conversation, I thought.

"Hi," I said. "I'm Jennifer. I live here."

The girl shook her head at me. "Do you realize this is the third time you've introduced yourself to us? And each time you've said exactly the same thing."

Holy crap.

No, I hadn't realized that. I would have sworn on a bible that I'd never seen these people before in my life. It was my first conscious inkling that something was really wrong with the way I "see" people. I wanted to die. I wanted to hide. College was very, very hard.

While most people don't realize I fall somewhere on the Asperger Syndrome spectrum it affects my life in a daily way. I have to be hyper-vigilant in all my interpersonal interactions or I end up offending people or putting them off. I hate the expression they get on their faces when I screw up - that sort of mixture of surprise and disgust when I break some social cue rule. It can be exhausting to talk to people. When I begin to feel overloaded, I reach for a book. Something about following the lines of print with my eyes calms me down and orders my brain. Still, that can be another social mis-cue; people feel snubbed or worse if you pick up a book and read in their presence.

Why am I talking about Asperger's Syndrome? Someone has to. It's one of those things we need to talk about again and again until people get familiar with the concept. Because maybe if people know what to expect from Aspies, they won't be so offended or put off by them. We may act insensitively, but most people with Asperger's are actually incredibly sensitive. We don't mean to be rude. We just don't know any better.

If you or someone you know falls has Asperger Syndrome, check out Asperger's from the Inside Out, by Michael John Carley. Carley writes about the experience of being diagnosed at thirty-six, at the same time his son was diagnosed with Aspergers's, and how it radically changed the way he looked at his past and how he prepared for his future. I highly recommend it.

1 comment:

Cleo Qc said...

Well, we share one more thing! The face-blindedness is the worst one for me btw. I'm awful and my son is worse...