It’s been suggested that I use my ability to articulate to explain or describe Asperger’s. And that’s really not possible because of course everyone with Asperger’s is an individual; we’re all different and we do things differently and feel things differently, even if we do have things in common. One might just as easily ask a single human being to speak to the experience of being a human being—how could they? One can only speak for oneself. Anything else is generalization.
But I’ll do my best to guide you through my life as someone with Asperger’s. And perhaps some of what I say will resonate for others who have it.
Of course, I didn’t know I had Asperger’s when I was a kid. Back then, it wasn’t something people looked out for, parents or medical professionals. So then people always ask me, “But you knew you were different, right?” Well . . . Not really. I mean, it wasn’t something I thought about. I was so absorbed in the things that interested me—the books, the TV shows I liked, the movies I watched over and over—that I sort of had blinders on in terms of the wider world. I believe it’s not uncommon for people on “The Spectrum” to develop these kinds of obsessive interests. We just need things we can focus on. That’s how we’re built.
As to being different, there were definite moments when the fact I was different was tossed in front of me so that I had to face it. Often this was because someone literally said things like, “You’re weird.” (Even my mother was known to say this; she was honestly worried about me, why I wasn’t more social, etc.) These comments were like darts in me; they hurt and I would want to cry. But later, in private, I would often pull that dart from whence it pierced me and examine it. Why was I weird? In what way(s)? And did it matter enough to me to change?
The truth is, I liked the things I liked, and I didn’t want to stop liking them, nor did I know how to hide my enthusiasm for them. And here I became very lucky, or blessed—however you like to think of these things. Because I had two good friends who were willing to go along with the weird stuff I liked. And I had a father who was willing to listen and discuss these things, too. (And later I would use my power of words to get others to like things like Watership Down.)
Still, the amount of energy and intensity I devoted to my interests . . . I think it exhausted my friends a bit. And that intensity sometimes spilled over to include them, making them part of my obsession, and that was almost certainly a bit frightening for them, too. But somewhere, somehow I learned how to pull back. Compose myself. I think this is because I found approval so important. Not from my friends or peers, but from the adults around me: my parents, my teachers, my best friend’s mom. I don’t know why this was (or is), but the desire for approval motivated me to, well, behave.
I knew what was expected of me. Adults made it pretty clear: sit, be quiet, do your work. Maybe that’s why I liked them more than my unpredictable peers who never would say exactly what they wanted or required of me in order for me to be “liked.” Adults had rules, and those I could learn and follow. My classmates had rules, too, I think, but they were not clear cut. They made no sense to me, and I could not be bothered to expend the energy to try and learn and understand them.
In this way I became a model student and the pet of various teachers. Which probably didn’t help me much in the eyes of my fellow students, but I had my blinders on and didn’t care. Except on the occasions someone was outright mean to me, I was oblivious. And when other kids were nice to me, I was bewildered. I did not know how to respond to kindness from a peer, and I think that probably made me seem even more strange and cold and aloof and maybe even just plain bitchy.
This is the bottom line for someone like me: we need things to be concrete, logical. We want very much to win your love and approval, but if there are no definite ways to do that, we are at a loss. And then, when people do profess to like or love us, we can’t figure out why or how we did it. The whole world for us is a strange social experiment.
And yet we aren’t without feeling. We just don’t know how to show it appropriately. My mother used to say I was “tenderhearted.” And I am. I can cry for days about something on the news if I let myself think about it too much. If I put myself in someone else’s shoes, someone hurting, a victim, I am devastated. I had to teach myself to not think about these things. Like a psychic teaching himself to turn off his ability to read others’ minds.
When I was in school, part of the pilot program I was in was designed to determine our strengths. Mine were words/communication and “perception.” A sort of ability to see into people. So many articles say people with Asperger’s can’t read people, so either I’m different or we can but we do it differently than is typical. Or we learn, like with the empathy, to turn it off. Or maybe we’re just so damn focused on those other interests that we don’t bother with the people around us. My guess is that happens a lot.
But really, it’s the rules again. It’s Sherlock Holmes-ing your way through. I predicted Amy Poehler and Will Arnett’s breakup months before it happened. How? By watching the way they stood next to one another. Their body language was very clear. There are rules that apply almost universally, and people with Asperger’s are very good with things like that. If they can be bothered.
It’s why the teachers had me pegged to be either a district attorney or a criminal profiler. It’s what made me a great peer counselor in high school. Funny, isn’t it? That the girl who used to teasingly be referred to as “Data” (from ST:TNG) was the one the kids would come see early in the morning, creeping to her table, their heads ducked. They would sit and tell me all about the troubles at home, problems with teachers, etc. And I would nod and listen and only if/when I perceived they wanted a response or advice would I give it. And then they’d go buy me a cinnamon sugar doughnut as compensation for my time.
I began taking psychology classes my freshman year at university. Part of the curriculum was for students to go be tested themselves in various studies. I was used to having my IQ checked every couple years, so that bit was a breeze. But then one day a professor called me in and said, “We think you have Asperger’s.”
I didn’t know what that was. He said it was on the autism spectrum. At that time, the general view of autism was that people who had it sat in the corner and drooled, so of course I said, “No I don’t!” But then they explained it to me . . . And I said, “Well, then my dad must have it too.” And they said that was possible, maybe even likely.
And then I said, “So?”
Because having a name for it doesn’t change anything. I am who I am. I could hold up Asperger’s as some kind of excuse for acting the way I do, but I don’t want to. Maybe it’s nice to be able to say, “Oh, there’s a reason for all this.” But even if there wasn’t . . . The end result is the same. Me. Being me. Different and weird and focused and intense. Supremely logical but also terribly sensitive. Withdrawn because pain is unbearable and even a slight criticism cuts deeply. With a need for personal space and regular time alone. And with a sense of humor few others understand.
This is only a slice of what it means to have Asperger’s. And this, again, is only my personal experience. Sometimes, after having known a person a while, I’ll mention that I have it. They always say, “Really?! I never would have known.” And that’s because a person is a person is a person. We’re all quirky. No matter what name you give those quirks.