When I was diagnosed at age 13, the literature on AS was extremely bleak. Which, if you’ve read my entry on how being a geek saved my life, well you might think that was unwelcome news. Honestly, just the fact that I was related to autism killed me. Probably never cried as hard as I did that day. Today of course, we aren’t even given the fig leaf of being linked to it. We’re on that spectrum hard.
My point is this: the literature then was downright depressing. The focus was on what you couldn’t do. Sure they’d note that we had high IQs but that was almost a joke! It was a quirk. Like “oooh they’re autistic AND smart.” None of that mattered. We couldn’t look forward to normal human lives. We weren’t going to fit in. We’d need help. These were guaranteed.
I’m now 30 years old and I’m not sure how accurate I think the information was. Let me start off be stressing I think things are MUCH better. I think there is much better material out there. I definitely think the tone is still way too dark. But now it’s nuanced. It’s definitely better informed. And I think that’s for the better.
The earlier tone was incredibly dark and I think that came from the information we had. Honestly, the reason things were so dark was because there really wasn’t a lot of good news. If you don’t have a lot of stories about aspies getting up and getting their lives together, no point in lying. I’m not saying there weren’t members of our order out doing good. But the ones getting diagnosed, well I’m not sure things were so hot. Just how it goes.
But I think things are different now. And that all comes from the way diagnoses have changed. Let me pause to point something important out: autism rates increased not because of vaccines or anything like that. They jumped up because doctors got better at catching autism and especially something as tricky as AS. At least that’s how it seems to me. I’m not a doctor. It’s just my theory.
With increased diagnoses, suddenly you do have more information out there and I think that’s where things have improved. We’re just better about the disorder now. We’re also incredibly tech savvy so guess what? We’re not shutting up. I mean I’m here after all. We’re not content to be silent and look, my life is goodish. I wrecked my car the other day, don’t get me wrong. But this afternoon I recorded a podcast which I hope you all get to hear. My point is there’s evidence of hope.
However, I’m still not completely happy. And at day’s end I think that goes to the heart of my conflicted feelings about my disorder. Because the negative stuff? It’s out there. I’m as guilty as anybody of suffering that. I do still face my fits. I’m wildly obsessive compulsive at times. I’m prone to every social faux pas. I’ve really offended a great many people. Yet, I’m also married to a genuine partner who knows all of that. I work a good job. My interests are well fed. It’s complex this mental pattern we have.
Ultimately, that’s the tone I’m seeking in the literature. Brutal honesty. It’s going to hurt. It’s going to be painful. The challenges aren’t going to stop. But if you fight hard, life is unlimited. Anything we want to do, we can work for. Might not get it but ask the NTs in your life if they get everything they want. Life is a strange, weird beast. We’ve got every bit as much a chance at it as anybody else.