I’ve put a lot of thought into this post.
Yeah yeah, I don’t post much anymore. I really do have a lot going on.
Anyway, this post…
I’ve put a lot of thought into if I should even write it or not. If you know me in person it might actually come to surprise you. (unless you know) If you don’t know me, you might not care. It might be eye opening. You might think I’m crazy, or you might just walk away shaking your head.
I have autism. There, I said it. How long have I known? I was actually diagnosed when I was pretty young. I hear a lot “I can’t tell” or “You don’t seem like you have anything wrong with you” and you would be right, kind of. If you work with me it doesn’t take you long to see my tics. What are tics? Well, they are different for everyone. I count my digits by section, I clear my throat (a lot), bite my jaw, rock while sitting, my left hand thinks for itself, and the list goes on. Let’s go back a little…
I was an odd kid. Anyone will tell you the same who has known me long enough. (Not that I’m not odd now, just more manageable) I didn’t keep friends, I had friends in school and many of those people are still my friends. I don’t think they want to spend more than a few hours with me, but we keep in touch. Like any kid on the spectrum I would find an interest and then talk about it until I drove everyone bonkers. I really use to drive my family nuts. I still do. I seen Star Wars at a drive in (yes, I remember every detail. Which isle we were in, what we had to eat, blah blah.) After I seen the movie I spent years talking about it. My grandfather on my mothers side was especially irritated with me. I remember he would get cross when I talked about it. “He’s talking about those damned aliens and space ships again!” I never thought he cared much for me, I found out later that I was wrong. He just wasn’t sure what to do with me.
It’s still amazing to me that I wasn’t beaten to death by someone growing up. I was, in many ways, unpopular. Imagine that. I had all of those normal high functioning spectrum things like bad hygiene, I was loud, overly curious, only cared about my feelings, etc etc. Yet somehow I still had some friends, or at least people who didn’t hate me. I didn’t care either way. I think in many ways it’s built into us, not caring. It helps when so many people make fun of you. I was bullied, a lot. I obviously didn’t mind. I kept going back. I was told I deserved it. By teachers, by the principal. by other students, and by my family. Yeah, my family. Not all of them. My brother knew I was odd, and he didn’t care. He still doesn’t. He doesn’t know but in many ways I looked up to him, my younger brother. He was a lot more out going, and best of all he wasn’t strange.
I’m going to skip my Jr. High to High School years. They were especially painful for me. I’d honestly love to forget, but unfortunately I don’t forget too many things. High School did give me photography. I’ll get to that soon.
I do get confused sometimes. When people talk too much, or too fast (or if I’m not interested). I babble too much. When someone asks me a question I often ask: Do you want to answer or the short answer. To me there is a big difference and usually involves at least an hour of your time. I go off on tangents, and will bring up subjects where no one has an idea of what I’m talking about, except the said the word “Gems” and I associate it with something in the back of my head then start spouting every last detail about.. Oh look, a penny…
That’s just a small example…
Photography was the one thing I found as a kid that always captured my interest. I would spend hours just studying my camera. Sitting with slides, negatives, and prints trying to improve on my style and technique. It was really, other than being a preacher, the only thing my mother encouraged me to do. She bought me my first “real” camera. It was a Minolta X700. It was the most amazing thing I’d ever held in my hand. I still own it. (it’s really hard for me to let things go) Between my mother and Mr. Mike Pace I don’t think I would have even had any success. My attention to detail is very helpful too.
I get asked a lot why I’m so different from many autistic people and I tell them this: When I was a kid no one really knew a lot about higher functioning autistic people. My mother refused to put me in special education. She forced me to stay in general ed. This might seem cruel (it was), but in fact it helped me. She forced me to deal with people. To engage people. She spent a great deal of time helping me fit in as much as possible. She taught me the art of mimicry. I was able to fit in because she taught me to act like the other kids. Hell, we were poor and couldn’t afford the therapy they told her I needed. There were a few kids that I hung out with that really helped. My best friend Eddie, who loved the fact that I was strange and then there was Becky. Becky P was in many ways my savior in high school. She accepted me, and helped me in many more ways than she’ll ever know. Like almost everyone else in my life I hurt her, and drove her away. I don’t regret much, but I regret hurting her. I loved her as if she was closer than any sister or friend I could know. I wish she knew that.
I seem to leave a trail of hurt people. I wonder if I can help it sometimes. I often speak without thinking, and just say whatever comes to mind. It’s the only part of autism I really hate.
Being an adult with autism is interesting. I’m aware that I’m different, but to be honest I don’t care. I’m often like some Mad Hatter leading someone down the rabbit hole. Well, I guess that would make me… I think you understand. I work a normal job, two actually. I’m a photographer by day, and work in an exciting factory at night. Did I mention that I don’t sleep much. I never really have. An hour or two a day or for a few days. That could be why I’m so cranky sometimes. I am able to function as a normal (relatively normal) person. I have a wife and two kids. Both of my boys have autism as well. I think it helps me understand them. Even better, when his teachers start to tell me that I can’t possibly understand I like to tell them my story and then smile as it sinks in. We’re all different. It drives my wife crazy.
I function just as normal at both jobs as almost anyone. I might get overwhelmed more, nervous a little more, or even just scared but I do it.
If you’ve read this far, and have questions please ask. I know I jumped around a lot. I do that. Like I said, I babble.
If you have a child who has any spectrum disorder just be brave. If they are on the high side of the scale then they’ll be fine. If I can make it then anyone can. If they are on the lower end of the scale then you just have to be a little more patient. They’re in there and believe it or not they really want you to know them. Don’t give up. Keep reaching. Never give up. No matter how long it takes. I mentor a lot of parents with spectrum kids. Hope is the one thing you have that keeps you getting up every day and facing them. They have the strength and so should you.
We all dance to our own music. That’s our thing. Your thing is to try and hear that music.
It isn’t easy. If anything in life is easy you should question it.
All right. You know a little more (or a little too much) about me. If you have questions please ask. Keep in mind that I hold nothing back. If you are looking for resources for a child I’ll try to help. I make no promises. If you need a mentor, or just a shoulder. Ask, yell, or write it. I’ve been there. I live there.
I am or I have? I have autism. It is not who I am. I look normal because I am, for me.
Smile for someone who can’t smile for themselves…
One thought on “I am or I have? But you look so normal…”
Tanis, thank you for opening your heart and sharing what it is like for someone with autism. As an autism advocate, I can only do so much to point people with autism and their families to the resources that may be helpful, and help the community understand autism better. You are golden to us advocates. Nobody can advocate better than somebody experiencing it themselves. I hope you will right more about life with autism. It is so helpful for others to understand “where your coming from” so maybe your boys and others won’t have to be bullied. People just need to know that autism is awesome and you were born with superpowers. 🙂