When I was 17, I made a website I did it because, at the time, a lot of information about my diagnosis was in jargon-filled textbooks for neuropsychologists. Parsing it all really sucks–especially when you’re, like, 14 years old–and I wanted to explain some of this information in clearer language. I also wanted to explain exactly what my skillset is. (For some reason, people in my real life are totally stymied by it, and I don’t know why. It’s always made perfect sense to me). But more than that, I wanted a space where other people with this diagnosis and their families could find each other. I wanted to meet people like me.
A lot of people stopped by. I learned how silly it was to expect people with my diagnosis to be “like me” and I made a ton of friends. I enjoyed meeting other NLDers and their parents. But slowly, very slowly, some of the comments I got started to weird me out:
“Learning about NLD when you have NLD is like finding your way out of a closet willed with oatmeal.”
“I always wondered why [my son does such-and-such], now I know why“
“You are an Angel sent by God.“
“….insight….”
“You’re an inspiration to all.”
At the time, I couldn’t explain my squick at all. It’s hard enough to do now. In part, it’s like that maxim from Spiderman (“With great power comes great responsibility”). Except that I have to take responsibility for the power that other people attribute to me, rather than the power I actually have. I was accosted once by a woman at a conference who said to me: “I have a son with Asperger’s who doesn’t look people in the eye. I noticed you don’t look people in the eye, either. Why not?” And while I’m thinking, “I don’t look people in the eye? What?” my mouth goes on the defense and spews a bunch of words . (For the record, I have a hard time looking at things–anything at all–for a lot of reasons: I have an eye muscle weakness that makes it hard to focus both eyes straight ahead for very long, I have trouble looking at things while organizing speech, and I just can’t find a lot of things all that well–including camera lenses when I’m getting my picture taken. )
This power that some people ascribed to me was partly my fault. I did write that I hoped to explain: “how people with NLD think and perceive things (well, at least, how I think and perceive things).” And since I was translating neuropsychiatric research and theory, I also said “we tend to __” or “People with NLD usually __.” But when I tried to explain how I thought, it was not to give anybody answers. It was to show them options.
In junior high, someone showed me an option that totally blew my mind. I was reading Nobody Nowhere by Donna Williams. In that book, I learned that you could actually think about how you thought about things. When I explained some of my thinking to people, they started to teach me more efficiently. I could advocate much better for myself. I would never have learned that skill if no one had modeled it for me. And I wanted to show other people that it was possible to analyze your way of thinking and maybe describe it to others, in case it would help them.
The very rare times that I tell anybody why I do anything anymore–usually with lots of “I’s” and “for me’s”–aren’t to give them a definitive answer. They’re to alert them to the possibilities of all the answers they could get. And I hope to dear God that other people respond.
Further reading:
Exploiting our stories. Destroying our sense of privacy at Ballastexistenz
Shedding that striped skin (maybe) at Random Reminiscing Ramblings
