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Young Writers Project: 'Life With Autism'

YWP Photo Library, photo by Regan Day, Essex Junction
Rae Earley, 17, of Burlington writes about what it’s like to live with autism.";

The autistic mind is a very complex mechanism. Take it from me. I am on the autism spectrum. People with Autism Spectrum Disorder (ASD) see, hear, sense, and process the world in completely different ways than neurotypical people. While I am not an expert on ASD, I am an expert at living with it. I am aware of it every day. People with ASD sense more things than people who don’t have ASD. Smells are heightened to another level, and certain noises irritate our sensitive hearing. For example, I can’t tolerate the sound of a squeaking windshield wiper or someone slowly dragging their finger over wet glass to make a rubbing noise.

Little escapes the eye of someone with ASD, literally and metaphorically. Because those with ASD have a difficult time understanding figurative language, you’ll notice that this essay will be straightforward. People with autism like routines. I am surprised when something new and unexpected pops up in my schedule. It catches me off guard and I suddenly feel stripped of confidence, not completely sure of what to do. When I am organizing a schedule, I’m open to altering it. But once it is finalized, I like to go over it a few times to make sure I understand what is expected and then hope it doesn’t change.

I was diagnosed with ASD when I was nine years old. Usually a diagnosis can be made before a child is 18 months old but I am so low on the spectrum that neither my family nor my teachers knew I had it. I excelled in reading and had good verbal skills but struggled in math. My fourth-grade teacher (who specialized in math) decided to investigate more deeply. I was formally diagnosed that year. However, I didn’t find out that I was on the autism spectrum until six years later when I was a freshman in high school. I was very confused. I had rarely heard about ASD and didn’t quite know how to take the information. So I told myself that ASD hadn’t stopped me before; why should it stop me now? In retrospect, I think knowing your diagnosis is better than not knowing, even if you don’t quite understand it. It’s like when you get sick and you don’t know what’s wrong. Is it better to know or not know? I think it’s better to know, so you understand how to take care of yourself. The same is true for ASD.

ASD, for me, has proven to be an invisible obstacle. I am good at making friends, but keeping them is another story. Growing up, people would look at me strangely when I acted like myself. My classmates wouldn’t know what to say or would try to worm their way out of the conversation. I didn’t understand why they were looking at me funny, so I would brush it off and carry on. I registered their stares, but they didn’t make sense to me. Looking back, I understand that the cause for their confusing behavior was probably due to my strange behavior. Most people see me as a “normal” person without any special needs. They just think I am odd – and that hurts.

Another obstacle that is part of ASD is my sensitivity to sound and light. Flashing lights and booming noises combined can be too much for me. When I was younger, I hated going to the movie theater because my ears couldn’t handle the loud noises. I didn’t like concerts because of the flashing lights and loud music. Now that I am older concerts are still a little rocky, but I love going to the movies and have learned how to cope in highly stimulating situations.  I proved this to myself when I was recently visiting my cousins in Los Angeles. I was away from home without my mother for the first time and my aunt and uncle arranged a visit to the Universal Studios Theme Park. Because the words universal and university sound so alike, I did not know there was a difference. I honestly thought that we were going to a college campus. When I realized that we were at an amusement park with loud, dark, crazy rides and simulations, I was terrified and knew that overstimulation was inevitable. But I didn’t want to hold everyone back because of me, because of my autism. My top priority was to make sure that my cousins enjoyed themselves and had a great memory of spending time with me. So I struggled through the whole, hot day and never let on how much I was suffering. At the end of the day, I was relieved that it was over and that I would never have to go to Universal Studios again. But most importantly, I had faced one of the obstacles of ASD and I was able to overcome it.

Despite the obstacles that ASD has put in my way, ASD has also provided me with what I consider to be my greatest natural gift: the ability to memorize and recite books and movies with very little effort. Books are important in my house and my mother always read aloud to me before bed. When I got to preschool, my teachers thought I was “reading” books and were very impressed with my abilities. I wasn’t really reading, I was reciting my favorite books from memory. Reciting movies is how I would put myself to sleep. I would begin a movie and play it in my head until I grew too sleepy to continue, then I would pause and imagine a bright red bookmarker marking the scene where I would stop. The following night, I would pick up in the exact same spot and continue watching the movie in my head until I reinserted the bright red bookmarker and stopped for the night. My ability to memorize made me feel special. I felt like I had a superpower. I now know that I am not the only one who can memorize movies, but to me, this is my strongest natural talent and I would not trade it for the world.

Memory is not my only gift; I can also be very focused. When I am interested in a topic, I spend hours researching it by reading and watching documentaries. If I am interested in a topic, it is very hard to wrench me away from it. This has been very useful in school, especially when I discovered how much I love film and filmmaking. I am lucky that I recognized this interest at the end of my sophomore year, and was able to enroll in Burlington Technical Center in my junior year. I now am studying Digital Media and spend 2+ hours every day doing what I love. I could sit at the computer in the Digital Media Lab for hours on end, editing clips and putting them together to make a film. I tested this recently by entering a team in the Vermont 50 Hour Film Festival. We were given a prompt on a Friday afternoon and had 50 hours to write, shoot, edit and submit a short film. I led a team of six as the director and never got tired and never slowed down. I was too focused to think about anything else and that focus helped me complete the project on time. You can see that my ability to laser-focus is very useful. I thank my autism for that.

I used to blame a lot of challenges on my autism; my inability to keep friends, my weakness in math, being that average kid walking around high school hallways with nothing special except my special needs. I was even scared that I wouldn’t understand how to truly love someone who wasn’t part of my family. But now I feel differently. Maybe there is no one or thing to blame. Maybe it’s just my inexperience. Maybe I’m just like other kids discovering who they are and where they belong in the world. Maybe I’ll find the answer later in life, maybe I won’t. But I’m not focused on that anymore. If I focused on my autism all the time, I would wear myself down until I became depressed and forlorn. I don’t want to live like that. Instead, I realize that I don’t provoke my autism; the environment around me provokes it. If I’m startled and react harshly, that’s my autism. That’s not me.

Autism is like an ingredient. It’s something I can’t change. It’s like trying to make a cake or an apple pie. You can’t make a cake without batter and you can’t make apple pie without apples. You can’t make me without autism. As uncomfortable as that can be, it is the truth.
And I’m learning to say, “I’m okay with that.”

The Young Writers Project provides VPR's audience another avenue to hear and read selections and see visual art and photography from Vermont's young writers and artists. The project is a collaboration organized by Susan Reid at the Young Writers Project. The thoughts and ideas expressed here are the writers' own and do not necessarily reflect those of Vermont Public Radio.

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