My Brother Has Autism, But Please Don't Tell Me I'm Good With Him
My first memory is from some time when I was very small. I was sitting in a stroller, looking up at my much older cousins above me. They were playing peak-a-boo, trying to make me laugh. I remember there were trees and it was a sunny day. I also remember having one overwhelming feeling: I wanted a sibling of my own.
I don't remember much about being an only child. My brother was born a few months before I turned 6, and those years tend to be blurry for anybody. One of the only resounding feelings that I remember having is that I wanted a sibling, badly. I come from a large extended family. The list of cousins and pseudo-cousins on my dad's side is so long that I still can't tell you with certainty which of them I am actually related to and which are just very close family friends. The bulk of these cousins are boys, mostly older than me. I wanted one of my own. I wanted a brother.
A sister was never in the question, for some reason. When my parents suggested, at one point when I was young, that I could potentially have a sister I told them, 100% certain- "No."
I wanted a brother so badly that I made myself two imaginary ones. Their names were Scott and Steve. In reality these were characters from an obscure dog sledding movie I had become fixated on at a young age, and I was convinced that they were somewhere out there, just waiting to be reunited with me- their younger and really fun little sister. I wanted to go on adventures. I wanted to tumble in the dirt and pee outside and to stay up late laughing. I wanted so badly not to be an only child.
For Christmas I would ask for the same thing- a brother. I would ask my parents where my real brothers were because I was so certain that I needed one I assumed that he, this imaginary sibling, had been stolen from us. I figured he was somewhere trying very, very hard to get to us. On one rainy day we went for a walk on the trails by our house. I looked up at my parents and I said: "It's OK. You can just tell me where he is. I know that I have one." They rolled their eyes and told me with a lot of force that I needed to stop. There was no other sibling. I was the only one.
When I was young my mom got in a car accident. It was the winter, it was icy, and my dad and I were a few cars behind her. The day after she was on the phone with her doctor talking in hushed tones. I was hiding behind a partial wall that divided our kitchen and living room. I heard her say, barely a whisper: "I just think that I should come in and make sure everything is OK... because I'm pregnant." I don't really remember this very well, but I guess I came out from my hiding space after she hung up the phone with a look of pure evil and excitement on my face. "I knew it!" I yelled. "I'm getting a brother!"
My parents, as I mentioned, were convinced that I would get a sister. They both had sisters, and I guess that's what they assumed they would have. I knew, with fierce certainty, it was my brother in there. Jokingly, they let me pick out a boys name. Scott and Steve were still very much my best friends at this time, so I suggested the name Scott. I already had a cousin with that name and we all agreed it would be confusing, so we decided that the name Steve might be nice. Steve is now a very real person, 21 very sassy years old, and I like to remind him when he is being especially annoying that I chose his name. He rolls his eyes at me.
When I found out my mom was pregnant it was as if I became complete. I remember feeling so alive, so excited. I remember not being able to sleep. I remember watching Angels on the Outfield with my cousins when my dad called to tell me Steve was real, he was here. I remember wondering when he would be able to play with me. Probably like, a few weeks, right? My most prized possession was my I'm a Big Sister! shirt, a piece of memorabilia I often kick myself for losing track of. I remember walking into the hospital room and being scared of how tiny he was. I didn't know what to do, so I kissed him on the forehead because everything else looked too fragile. "Oh!" one of the nurses said, beaming at my parents. "Look at that! She is just so good with him."
I didn't know it at the time, but this would become a compliment that I would get often, obnoxiously so, forever. For the next 21 years.
You see, Steve has Autism. My mom would say that she knew there was something different (notice how she never said wrong or disabled) about him early on. We never talked about Steve because it was never anything worth talking about. He was just our Steve. We were going to love him, he was going to love us, we were all going to put up with each other, and our weirdness because that's what a family does. It was just how we lived, how families are. Steve had different needs from me and that was OK. It wasn't a big deal. It was just who Steve was.
From time to time well-meaning people ask me what it's like to have a sibling like Steve. I get where they're coming from, but I've never liked this question. It makes me uncomfortable. I have one sibling. I only know what it is like to have this one, my favorite one, the best one, the silliest one. Our normal is just that to us- normal. What's it like to have a sister that's older than you? What's it like to have a twin? I don't know what it's like to have a sibling who is not on the Autism spectrum and Steve doesn't know what it's like to have a sister who knows when to stop talking. But he's always been just...Steve. He's always been hilarious and musical and thoughtful and silly and handsome and tall and somebody who will gladly eat cheeseburgers for every meal.
Because here is the thing- you need to stop complimenting me for being nice to my brother. I don't take care of him, we take care of each other. Steve buys me groceries sometimes. He walks the dog. He helps me do the dishes when I've had a long day. He tells me to go to bed when I fall asleep on the couch and makes sure all the doors are locked before we go to sleep. I struggle with depression. Sometimes it is so overwhelming that I need to lay in my bed and cry. Steve comes and lays on the bed with me, rubbing my back, and reminds me of all the good things that are happening in the world. They are always sweet, simple, and obvious things. "Liz! You've got a great dog that loves you!" He gives me this information as fact. Why would I be sad if I have a dog? The week of my college graduation Steven called me on the phone. Talking is not one of his favorite things, so this was big stuff. Without prompting he said "Liz, I am SO proud of you" and I knew he meant it.
When our mom passed away in 2010, Steve would call me to complain about our dad. He would tell me that he missed our mom but that we needed to stay positive, that she would hate to see us sad. He was right. When we were too sad and exhausted to put up holiday decorations that first year he remembered where every single one of them went. Steve was the one who made us get out of bed and get on with our lives. Steve was the one who forced us to keep doing the same things we used to do even though it sucked. He would look at us, full of wisdom and sass, and remind us that she wanted us to be happy when she was gone. People often wonder how Steve handled her dying, if it messed him up. Yes and no. He was sad, of course. But he is so wise, so literal, and so strong that he kept us all going. He is what held us together during the worst time.
You need to stop complimenting me (and all the other people who love somebody who isn't "normal") for having the common human decency to treat my brother like a human. I treat my brother like you probably treat yours. He drives me crazy. We fart on each other. He tells me to stop singing in the shower. I tell him to turn his music down because it's terrible (one can only listen to so much George Strait before it becomes too much), and we both keep the traditions of our childhood alive in our own ways. He still eats the food that I set aside for myself. I still snore so loudly that he sometimes walks from the other end of the apartment to tell me to shut up, as if I can just turn it off. We are not special. We are regular siblings. We fight. We love each other without question. We make fun of each other and we get sad together. He is somebody that I love dearly, so please stop complimenting me for treating him as such. Stop telling me how great it is. If you're going to compliment me for being a good sibling, you need to compliment him too.
I hate when people compliment me for being good to Steve. Anybody who knows Steve knows that he is impossible not to be good to. He is always upbeat. He likes everybody. He will remember your name, every tiny detail about you, the conversations you had, and every other tidbit that you will likely forget. He will wave to you on the street. He will give you a hug, even though he doesn't really like them, because he knows it will make you smile. He will write on your Facebook timeline at midnight on your birthday and beat everyone else you know to the punch.
It is hard for me to articulate how much it annoys me when people compliment me for being good to Steve. I expect people to be good to each other. I expect that, no matter what abilities you do or do not have, no matter the differences between you and the person next to you, that we will be good to each other. We take care of the people around us. We are kind to strangers. We try to find humor in shitty times. It's how we were raised. It infuriates me that people expect me to be anything but good to Steve, as if it's something deserving of praise. Please, please, stop complimenting me for being a decent human. Please stop complimenting me for living with my brother. Please stop complimenting me for being his friend. It's what I've always wanted. I've always wanted a sibling. I've always wanted to live with Steve when we grew up, even when we were small. Please stop complimenting me for doing what we all should do- for treating him like he's normal, because he is. Please, instead, expect others to do the same. Stop being surprised. Stop acting like it's a grand deed.
Last week Steve came to visit me at work. I could see him before he got to the front doors of the yoga studio I work at, he was slowly walking down the hill, talking softly to himself- he does that. He was moving without hurry. The way Steve walks is the physical equivalent of a Southern Drawl- he's in no hurry and doing just fine, thank you very much. Our friends like to call it the Steve Shuffle, which makes all of us (Steve included) laugh. He was in a job training and it was going well. He was excited to tell me some good news. I started crying out of happiness and pride, because he's just so fucking cool. He is absolutely crushing it at life. He is such a wonderful human. He is smart. He is funny. He is thoughtful. He is my best friend.
If you want to learn more about Autism, some of my favorite books are: Look Me in the Eye, Thinking In Pictures, and The Curious Incident of the Dog in the Night-Time.
PS- I never post anything about Steve without his permission. He read this post before I published it and gave me his permission to post it.