Musings on Autism

by Sami Bennett

Autism is weird, and it’s a weird thing for me to think about. I don’t want to consider it as completely tragic, where my brother is the victim and we mourn for him. It’s not like he’s dead or anything like that. On the other hand, I don’t want to consider it as completely beneficial, because it’s not. Autism is a great burden on my whole family, largely because so many people in this world are unable to connect to our struggle. Everyone in my family has believed at one point or another (including myself) that our struggles of dealing with autism are insignificant, because no one else is pointing out just how hard it is.

Not only do we struggle with the autism in my brother, but we struggle with the autism inside of each of us. Socializing is a great challenge. Understanding the mainstream sometimes feels impossible. We are an intellectual bunch and yet have a hard time connecting with the typical “nerdy” community.

It is hard to explain how difficult autism is to deal with. Sometimes my brother acts like a very spoiled child, yelling for things that he wants. If I get angry at him for it, sometimes he will get extremely upset and start hitting himself, and suddenly I realized for the millionth time that he is not a spoiled child. He has autism and whatever that autism is doing to him, it is making him act in a way that he does not want to act. I know he wants to be kind to all of us—and a lot of the time, he is kind to us. I remember precious moments when he would walk into my room and kiss me on the cheek, just like that, just out of the blue. Sometimes, though, something sets of an alarm inside his head, and he gets upset. Sometimes he can be calmed down with talking, writing things out, or if we help him say what he wants to say to us, but it is hard, and doesn’t always work. Sometimes he just has to be angry. There are lots of times when he gets angry at night. My parents get about as much sleep as they would if they had a perpetual two-year-old running around.

I don’t have many early memories of my brother or his autism, to be honest. Autism was never something new or different, never something to be remembered as distinct from other things. He was just my brother. He always has been.

My brother cannot take a shower by himself. If we told him to go get a shower, got him in the bathroom and heard the water running, he probably would not be able to turn the shower off himself. Even if you left him there overnight, in the morning you would wake up to find him still in the shower, unable to initiate turning off the shower, getting out, and putting clothes on.

Traveling can be a nightmare. My brother is extremely picky about what he eats, and he cannot change that. If he was not given the food that he liked, he wouldn’t eat anything. He would simply starve. If he gets angry during a car ride, then he screams in the car, and there isn’t much we can do about it. If we yell at him to stop, he hits himself, probably hating himself because he knows he cannot stop, even though he wants to.

Autism is a very hard thing to understand without living with it.

Autism can be funny, too. My family laughs a lot.

My sister took my brother to the bookstore once, even though she was nervous about it, and he yelled really loudly, “Funny!” in the store, drawing everyone’s attention and making my sister feel embarrassed. Then she realized that he wanted her to relax, to laugh, to not feel so nervous.
My brother says some really funny things sometimes. When my mom watched a documentary with him about autistic people learning to communicate through typing on the computer, she told him he was going to do that someday. He said back to her, “You got it, baby.”

Everyone wants to be normal, despite the fact that normal doesn’t exist and it is a terrible thing to want. If we did not have autism in our family, we would probably have a different, also very challenging problem. I have learned from my experience with autism that everyone has their own battle they are fighting, even when appearances seem to say otherwise. For this reason, it is important to be patient and understanding of others. Sometimes on the outside people can lash out and seem really mean when inside all they are is scared and hurt and frustrated.

I have a really, really hard time writing about autism, because no one really knows why or how autism happens, and also dealing with it is an experience that very few people I know are able to relate to. I think if I read more books about autism, like Strange Son or The Reason I Jump, I’ll get some more ideas of how to write about it.

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