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What It’s Like To Grow Up With An Autistic Sibling

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From the moment a new sibling is born into your family, you know that it’s not about you anymore. For some kids—the ones who held onto their mom’s legs, crying, on the first day of preschool—this is harder. I was one of those kids. I stole all my older sister’s toys because I didn’t want them to get more of her attention than I did. I told my mom she was the prettiest lady alive and I meant it. A sniff of my dad’s cologne, Drakkar, possibly the most unfortunately ubiquitous scent in this world, still makes me tear up a little at the thought of how happy I was to run up to him at the end of every day when he got home from work and bury my face in that Drakkar-scented collar. I was a shy kid obsessed with my family, so when I got a new baby brother when I was seven, I was obsessed with him too. He would never be obsessed with me, and for years, I wouldn’t understand why.

Autism wasn’t always a household word in the way it is as of late. We’re desensitized to it now and we hear it all the time; it’s as modern as gluten or Netflix or the latest iPhone. When I was about nine, I found out that the reason my little two-year-old brother could read better than he could speak was because he was hyperlexic, which sounded like the opposite of dyslexia to me. Good, right? Well, no. It was a part of his autism, a term that I couldn’t understand to mean anything other than “special education.” The special education kids in my grade were in a world alone. They were pulled out of classes and walked next to aides in the hallway. They didn’t have friends they ate with at lunch. When one of my guy friends did something stupid, another boy would call him a ‘sped,’ which I knew was synonymous with stupidity. How was my brother going to be one of those kids? I don’t remember being told my brother was autistic. It was like finding out my hair was brown or that pushing a door to get through it was called ‘opening’ it. It was just a term to describe something that I already knew.

The screaming was a coping mechanism for him. It didn’t matter where we were—restaurants, delis, gas stations, car dealerships—he had inner ear problems that made regular noise practically painful for him, but we wouldn’t find that out until much later. He screamed at my swim meets and ran around until my mom was sweating from chasing him. The worst were the airports. In one airport, as my brother cried from anxiety and exhaustion during a two hour delay, two older women loudly expressed their desire that more families “learn to control their children” and their belief that “some people are just uncivilized.” My dad put his hand on my shoulder and guided me away as my cheeks flushed with anger. He said nothing until five minutes later, when he glanced over at them and said: “Some people are really fucking uncivilized, Cris.” At thirteen, I appreciated the curse word and the sentiment.

When you grow up with an autistic sibling, you learn patience, with strangers, your parents, and the world at large. You hold your sibling when they cry, or you try to. You learn not to cry when they pull your hair on a long car ride. You stop comparing yourself to them. “But William screamed the whole way here and all I want is to watch TV!” I’d protest when my brother took over the only TV on vacation. Video games were the only babysitter my parents could trust, though, and I was never going to be right. When you grow up with an autistic sibling, you learn that your friends don’t get it, or you just assume they won’t. You get embarrassed when your sibling runs out of the house naked or rides their bike two miles away without telling anyone. You tear up in the bathroom after you see your best friend and her older sister play soccer together. You don’t bring friends over. It’s just easier that way.

My Dad was right. Some kids were as uncivilized as their ignorant parents. When cases of autism started coming in larger groups every year, my parents worked with others in the area to advocate for an autism awareness week at our school. On the first awareness week ever, a kid named Eric on my bus complained about how he shouldn’t have to hear about retards every day. Kill them, he said. Fucking retards. The spartans used to leave them on hilltops, you know? His friends shook their heads. To die, he said. Because they’re useless. My wrists hurt, my blood felt hot, the anger was like a weight in my stomach attached to a hook in my throat. It dragged and burned. The tears welled.

Some kids really are civilized, though. When you grow up with an autistic sibling, you learn what it is to be an advocate without ever learning what advocacy is, maybe not even ‘til you’re sixteen. At thirteen, though, you might stand up on your bus and tell a kid that he’s disgusting. You might tell him that he’s wrong and that he’s the weaker member of society, and that maybe he’s the challenged one because he can’t use his small brain to learn one new thing about people with disabilities every day for one week. You might use the curse words that your dad unwittingly taught you. You might tell him to get the fuck off the bus before you slap him. And all the kids around you, they might clap. They might cheer for you. They might escort him off the bus and they might spit out the windows at him as you pull away.

When you have an autistic sibling, you might take years to learn that other people will learn if you help them. Kids will ask how old your brother is. Is he like rain man? Well, he knows exactly what day of the week my birthday will be on in twenty-six years, you’ll say. They’ll think that’s cool, but then you’ll explain that your dad was mad when your grandpa called your little brother ‘rain man’ on Thanksgiving and they’ll nod, maybe they’ll understand a little. Your first boyfriend might see you hold your little brother as he cries for your mom. He might tell you “I love you” for the first time after that, and you might realize that someone else thinks it’s beautiful that you care about someone else so much more than you care about yourself.

When I came home to visit during my last semester in college, I asked my brother what I should do after I graduated. “You should come home, I think,” he said, “because I miss you and I like it when you’re here.” Maybe my brother was never obsessed with me in the way I wanted. I never got to teach him much, or play soccer with him. When you grow up with an autistic sibling, you learn that love can’t be measured with verbal confirmations or gestures. I knew my brother loved me when he let me hold him when he cried. I knew he liked me enough to tell me about his favorite video games. I knew he knew about my life when he asked my current boyfriend where my ex-boyfriend was. When you grow up with an autistic sibling, you learn that it’s not about you anymore. And just like with any sibling, you learn to appreciate that as one of the most precious things you could ever learn. TC mark

image – Autism Society / DSM-5
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  • http://mylittleblueelephant.wordpress.com Fluffy

    You could have easily been writing about me here too! So many moments that ring true. Especially airports!! I remember when my brother got so distressed he had bruises all over his arms where he bit himself because iur flight was delayed for 5 hours. They wouldn’t let us though to tbe soft play area until 2 hours before our flight… because that’s the rules! Excellent. Luckily though, I did have an excellent few friends that treated him like their own brother :) that helped.
    The naked in the street (and weeing in public… well anywhere too?) made me smile in reminiscence!!
    Nice entry. Honest.

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