I’ve been debating about making this post for the past few weeks. So that I don’t have to repeat a bunch of stuff, please read this rather short posts here and here before continuing.
What I’ve been debating about for the past couple of weeks is whether or not to write a post for “Autistics Speaking Day”.
I’m actually still debating right now, as I write this. I have a habit of writing blog posts and then deleting them, so if you’re reading this then I guess I decided to follow through (most likely after writing and rewriting a few dozen times) :P
I don’t actually know who, if anyone, reads this blog on a regular basis, or who might read it today or down the line. I do know that there’s a good chance that family members, old friends, people I met through my business, people from autism groups on twitter, and random strangers may all see this. And that is the main reason why I’m reluctant to write this post.
I pride myself on being honest. Completely honest. I don’t lie (ever), and I try my best not to act one way around one group and another around another group. Everyone that knows me at all knows that I’m a Christian, and you all have my permission to call me on things when you don’t think I’m living as a Christian should (though I may not agree with your assessment, I will take it seriously). Being honest is as much a part of my belief system as it is a part of my core personality. I’m not perfect, but it’s just not natural for me to be dishonest.
But there’s a place where “being perfectly honest” meets “sharing too much”. Omission is not the same as dishonesty, unless it’s done to purposefully mislead someone. For instance, you most likely wouldn’t run around telling everyone you have a bad rash on your bum, but if you say “there’s no reason, really, I just like to stand!” when someone asks you why you aren’t sitting down, you’re lying.
That line between being honest and sharing too much can be hard to find, though, sometimes. And for me, it’s hard to find right now. I want to share this information, for those participating in Autism Awareness Day on twitter, but I’m not sure I want to share this info for the people I’ve known all my life. Many of which, I’m sure, will think I’m crazy. I don’t want to open myself up to (more) ridicule, but I also don’t want to feel like I have to be two different people.
Several years ago I came to the conclusion that I probably have very high functioning Asperger’s syndrome (Asperger’s is on the autism spectrum, in case you didn’t know). I came to this conclusion after a lot of research, though I’ve known about, and identified with, autistic people for most of my life. Until a few years ago I never considered that I could be on the spectrum, because, well, I communicate too well.
I was weird in school. I’m still weird. Ask anyone that knows me (except Robin, who thinks I’m a saint for some insane reason), and they’ll agree.
I grew up feeling like crap. I hated myself. I wanted to die, sooner rather than later. I felt like I was stuck in a world where I didn’t belong, I was in pain all the time (from a neurological disorder, see this post) and I just wanted to go back home to God, where I belonged. (Okay, I still feel that way most of the time.)
But the only exposure I had to autism was classic autism (little kids, who I totally “got” and could play with for hours, but who were mostly nonverbal) and the “autisic savant” stories like the movie Rainman depicts. I remember wishing as a teenager that my math skills were just a little more advanced (I finished college level Calculus I at Purdue in 4 weeks the summer after my sophomore year of high school, but my skills weren’t good enough to qualify as ‘savant’), but I never really thought about it beyond that.
I was the smart kid. I helped teach classes when the teachers were negligent, I helped tutor other kids when they just couldn’t get something, or they were scared a parent would beat them for having grades too low. I asked questions in class every time a teacher was vague, not because I didn’t understand, but because I figured someone else might not understand — and besides, it’d make the teacher better at her job. I had exactly one friend in elementary/jr high, but I treated her like crap (I didn’t understand that’s what I was doing, I didn’t know any better). I got along with most everyone else, I just didn’t consider any of them friends (and I’m pretty sure the feeling was mutual).
I always felt like something was wrong with me. I never felt human. I still don’t, most of the time.
I thought I was crazy. Or everyone else was crazy. Or maybe both.
I never dated. I had a whole list of reasons why I never dated (I’d have listed them if you’d asked me), but it really came down to the fact that no one ever asked.
I simply could not comprehend why anyone would be upset about something sad happening in a movie. It’s a story. (see my previous post)
I never talked to anyone about how I felt inside until I was 16. It really just wasn’t done in our family. We would talk about things, just not the deeply personal kind of stuff. Maybe other family members talked about that kind of stuff and I just missed it, I don’t know, but I don’t think so.
When I did try to talk about these things I found I couldn’t. I met a guy named Ryan at church camp that summer, and he seemed really kind. He was a counselor that summer and had the reputation for being a good listener, and I was desperate for help. I tried to talk about what was going on in my head and all I could find was silence. It hurt to try to talk. I’m not sure what made him stay there, trying to coax it out of me, but he did, and I’m forever grateful to him.
At one point I gave up, and tried looking him in the eyes. I’d never done that before, really looked someone in the eyes. They say the eyes are the window to the soul, and I’d always felt an extreme need to protect that. I would look at people, I would give “eye contact” but I would never hold that contact long enough for anyone to see inside. I would look at a person’s eyebrows, or the whites of their eyes, or at something behind them. I looked him in the eye though, forced myself to, and held the gaze, hoping that by letting him see he could just know what I was feeling and I wouldn’t have to try to find the words. That hurt more than trying to talk, and I don’t think it worked.
I tried to contact him after camp, using letters, and found that it was much easier to write things than to try to say them. I tried to explain the eye contact thing to him. I think he misunderstood my intentions, I’m still not sure. But he wrote back, he kept in touch, he was even so sweet and helpful that he’d stand there on the phone for hours listening to me breath while I tried desperately to find the words for what I needed to talk about. He stuck around for a while, always there when I needed him. Then he broke off contact abruptly and completely. I still don’t understand why, but there are two years I would not have made it through without him. Ryan, if you ever read this, thank you.
I’m a pretty intelligent person. I’ve only ever done one official IQ test and they never told me the results, but it got me put into a “gifted ed” program. But the first time I took an “emotional IQ” test I think I scored somewhere in the bottom 30%. That’s what got me started looking at Asperger’s.
And suddenly, perhaps, everything made sense. Perhaps I make sense. Perhaps I’m not just crazy, perhaps my brain is just wired differently than everyone else’s.
The “4 going on 40” phrase my mother always used when introducing me to strangers as a child suddenly made sense. My inability to lie, and my tendency to take everything literally make sense. The compulsion to hide in a corner and rock (which I rarely did, but often felt like doing) made sense. My need to get lost in patterns, and my being completely mesmerized by geometric screen savers and spinning things made sense. My inability to talk when upset made sense. All those meltdowns as a child made sense.
Of course, just because it makes sense doesn’t mean it’s right. I’ve not been officially diagnosed. I don’t trust psychologists (for good reason, I could tell you some really interesting stories), and I’m over 30. A diagnosis at this point wouldn’t do me any good, and the people who don’t believe if now would still doubt it even if I had a diagnosis in hand.
Besides, I have the most awesome friend in the history of friendship, and he has dedicated significant portions of the past decade of his life to helping me grow as a person, learn how other people think, and overcome some of my more challenging issues. (Oddly enough, he doesn’t believe I have Asperger’s either, but he provides more help than I’d ever get from a therapist.)
So does it really matter if I have Aperger’s? Probably not. But would it have helped to know sooner? Absolutely!
Had I known that my brain was perhaps just wired differently than everyone else’s, I might not have breached untold numbers of social protocols in my teenage years and my 20s (because I would have known to spend the time learning, then). I might not have ended up in a situation that scarred me so deeply I had to spend 10 years recovering. I might have realized decades sooner that stress sets off all of my autistic tendencies, and calling a good friend when I see it starting can save me an entire day of banging my head (literally) against a wall. Ryan might not have disappeared on me. I might not have treated my best friend like crap when I was in school, without even realizing I was doing it (so sorry, Jenny).
My life might be different, better, now, in so many ways, had I only known. Just knowing it is a possibility, whether it’s definite or not, has helped me tremendously for the past few years.
So I guess I’m going to go ahead and post this, and I might regret it, but at least I was honest. If you know someone who shows autistic tendencies you may be afraid to say anything. If it’s a young child let it go, no need to freak out a parent. But if it’s an older child, and it seems obvious, say something to the parent. If it’s a teenager, say something! Even just a simple “have you ever heard of autism? Perhaps you should look into it.” Sure, it might be embarrassing, especially if you’re wrong, but you never know how much grief you could save someone.