Recently, at 48 years of age, I was diagnosed with Asperger’s syndrome. For most of my life, I knew that I was “other,” not quite like everyone else. I searched for years for answers and found none, until an assignment at work required me to research autism. During that research, I found in the lives of other people with Asperger’s threads of similarity that led to the diagnosis. Although having the diagnosis has been cathartic, it does not change the “otherness.” It only confirms it.
When I talk to people about this aspect of myself, they always want to know what it means to be an “Aspie,” as opposed to a “Neurotypical” (NT). Oh, dear, where to start . …
Neurotypical? Now there’s a new one. I suppose though, it’s better than “normal,” which has obvious implications.
Where to start, indeed.
I haven’t written much lately about my experience with adult ADD, which is not the same as autism. But reading this column made me think there are probably some shared experiences. Certainly the feeling of being somewhat “alien” — as though you’re operating on a completely different wavelength than everyone else — sounds familiar.
There was a moment today when a thought occured to me, a thought that—upon reflection—I’ve had many times over the years, particularly in the workplace. It seems, much of the time, that I tend to operate on a completely different wavelength from most of those around me. It’s like there’s something I don’t “get” that everyone else around me does. At times, when people talk to me (like a former boss I mentioned in a previous post, who wanted me to show more “ownership”) even though they’re speaking english, it’s like they’re speaking another language that I don’t begin to understand; like I’m on some other frequency and I can’t tune into the one everyone else is on.
I’ve seen it register, too, on the faces of the people I interact with, when they begin to wonder if they’re getting through to me. Then they figure they aren’t getting through to me, and they wonder why. I’ve often joked about being a “Type B” in a world of “Type As”, but there really does seem to be some disconnect, some non-meeting of the minds between me and a lot of people. I guess it’s a matter of just being very different in our basic approaches to the world. And trying to translate and interpret between those two approaches is sometimes like trying to reach through a two-foot thick wall of gauze. Frustrating and eventually exhausting. And most of the time it seems like I’m the one who has to stretch to understand and translate into the frequency or wavelength of those around me, because the truth is—at least in this culture— I am, and people like me are, out-numbered.
Probably one of the constant refrains people with Aspergers hear is “What’s the matter with you?” or “What’s wrong with you?” or some variation thereof. It’s the same with ADD. The diagnosis doesn’t change it so much as it gives it a name, and naming something is the first step to coping with it.
The one thing people seem to know about Asperger’s, if they know anything at all, is the geek factor. Bill Gates is rumored to be an Aspie. We tend to have specialized interests, and we will talk about them, ad infinitum, whether you are interested or not. Recognizing my tendency to soliloquize, I often choose silence, although perhaps not often enough. Due to our extensive vocabularies and uninflected manner of speaking, we are called “little professors,” or arrogant.
And if you had ADD you were labeled “lazy, stupid or crazy.” (And if you were also hyperactive, you got labeled a “bad kid.” But that hyperactivity could, if you were disruptive enough, also lead to treatment that those of us without the “H” didn’t get. People tend not to notice you as much if you’re just staring out of the window and daydreaming, rather than tearing all over the classroom.)
I don’t quite understand small talk, and early in my adult life, solecisms were frequent. At meetings, I launch into business without the expected social acknowledgments. It’s not that I don’t care about people, I am just very focused on task. Do you have to rehearse greeting people to reinforce that you should do it? I do.
No, but I do have to practice listening to people, which is still a challenge. It’s not because I don’t want to. Before diagnosis, I could sit through a meeting at work and walk out of the meeting not knowing what was talked about, or if I’d gotten an assignment (not to mention what it was.) I could also have a whole conversation with someone and walk away having no idea what we talked about. (Or what I might have agreed to do, because I was well practiced at making the right “listening noises” even though my attention was adrift.)
I’m less focused on task, but my ADD means I’m equally likely not to pick up on social cues. So, it has a similar effect. I remember one guy I went out with who never called me again. I thought he was cute, and nice enough, and wanted to go out with him again. But my contacts with him were met with a coolness I didn’t understand.
When we finally did get together again, I asked him about it, because I was curious about whether I’d done something to offend him. (By that time, I was used to discovering after the fact that I’d said or done something to offend someone without even knowing it. I never asked “What is something I said?”, because it usually was something I’d said. And I didn’t even know it.
So I asked him, and he said, “Well, when we went out the first time I though you were a bit of an asshole.” I asked why, again, and it turned out that at some point during our date I glanced over at the next table in the coffeshop where we were sitting, and noticed someone left a newspaper behind. He said I reached over, picked it up, and started reading it. In mid-conversation. I had no memory of doing it, but it sounded like something I’d have done. So I apologized profusely, and we went out a few more times.
But I really do have to practice listening to people. I usually practice on my family. When the hubby, or Parker, is talking to me I consciously remind myself to put down whatever I’m doing, turn around and look at them. I have to, otherwise I might not listen.
Like I said, there was a lot in her essay to identify with, but it was the end that really hit home.
I live with anxiety, because the world can be overwhelming and people have expectations that I always, sooner or later, fail to meet. I cannot begin to tell you how many times I have been told that I am rude, inaccessible or cold, yet I have never purposely tried to harm anyone, nor do I mean to be, well, mean.
I could tell you so much more, but instead let me share one last insight. Don’t pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for “normalcy.”
That’s the big one, knowing that sooner or later you will fail to meet those expectations. And knowing that they’re perfectly reasonable expectations, for someone with a “neurotypical” brain. Some of us are very good at compensating. We’ve had to be in order to survive. But you can’t keep “dancing as fast as you can” indefinitely. (Even the most hyper of us are not perpetual motion machines.) The part that hurts is that when you disappoint people, they tend not to have noticed that — up until the inevitable failure — you’ve been really trying. You may, in fact, have tried as hard as you could.
It’s just that sooner or later it won’t be enough. You’ll forget something important, miss some important detail, lose something important, forget to pay an important bill, etc. In fact, you’re guaranteed to do so, probably on an almost daily basis. And even if it turns out not to be all that important, the cumulative effect of having done so “umpteen” times can spell the end of a relationship, a job, a career. It’s all stuff that everyone does, from time to time. But most people don’t do it so often that it disrupts their lives completely.
I don’t know that I would trade either. Though sometimes I wonder what it would be like to be one of those people, and to have “neurotypical” brain for a day or two. What might it be like, in my case, to be significantly less forgetful, to catch important details at work that I would usually miss, to lose things less often (like the book I just started reading that got lost somewhere today, during the hour that I was running errands at lunch), etc.
I’m sure there would still be other problems, but part of me would still like to know what it would be like to fit in just a little better; and not just at work or socially, but in the world.
Part of me would like to know what it’s like to live without that sense of otherness that would cause even someone successful enough to be a manager at CNN to write such a revealing, personal account, and yet remain anonymous; to have to remain anonymous, that is.