Sharing my story on Autism Awareness Day

What this student with autism wants you to understand.

Autism is a word that evokes many different emotions in people. Some feel uncomfortable, some remember a cruel joke. For me, it’s a describing word for myself.

I didn’t know I was autistic until my freshman year. Before that, I always felt I didn’t fit in. all throughout elementary and junior high, I thought I wasn’t meant to be human. I would cry to my parents all the time about how I wished I was an animal, because I felt I’d fit in more. Even with all the friends I had back then, I still felt out of place.

My parents had always known I was autistic, but didn’t get me diagnosed because it’s harder for women to get a proper diagnosis. My parents hinted to me throughout the years that I was autistic in subtle ways. One time they gave me a book about autistic teens and I just didn’t get the hint whatsoever. I finally realized when I was around 15, but didn’t care too much at the time. It wasn’t until junior year that I really started doing research. The more I learned about autism, the more everything started making sense. It was like reading a book about your life that a stranger wrote. For the first time I felt like I wasn’t broken or wrong, I felt like I belonged somewhere.

I started talking to other autistic people online, and it was one of the most positive experiences I’ve had on the internet. Everyone was so kind and I was able to talk openly about things I’d been taught to hide. By then I decided I wanted to get diagnosed, as I had a lot of self doubt despite the overwhelming evidence. I talked to people about it and they mentioned it was hard for them to get diagnosed because they were women. I was so scared that they would tell me I’m not autistic, and that I’ve just been lying to myself. I had my first screening in October 2020, and was officially diagnosed with level 1 autism in November. I was one of the lucky ones. I had a good doctor who specialized in autism diagnoses and listened to me. Some aren’t so fortunate and have to go to multiple doctors until they find one who will actually listen.

There are many different traits that go with autism, and everyone’s are different. Some of the ones that I have/experience are intense interests (special interests), sensitivity to visual and auditory stimuli, struggles with communication and understanding sarcasm, sensory overloads, extreme emotions, and many more.

Sensory sensitivity and communication are my biggest struggles. I am exceedingly sensitive when it comes to all senses, but the one that bothers me the most is sound. Loud and sudden noises give me anxiety, and some noises physically hurt, for example the fire alarm that sometimes rings accidentally in school is horrible. The initial blaring gives me a huge spike in anxiety, making me jump. Then the pitch and volume feels like needles in my ears. Just thinking about it makes me uncomfortable. I usually try and plug my ears, but it barely makes a difference. Even when I’m pushing on my ears so hard it hurts. If it takes a long time to get outside I have to hold back tears and try not to break down in front of everyone.

One thing that helps me when I’m overwhelmed, whether by emotion or senses, is stimming. Stimming is when a person does a verbal, physical, or other action to calm themselves. Everyone stims, not just autistic people. Bouncing your leg when you were anxious or jumped up and down when you were excited is a form of stimming. It’s a normal reaction most people have. I have a ton of actions and phrases I use to stim, and they change over time. I also have different stims for different situations. When I’m anxious I sometimes hit my head or chest, it doesn’t hurt, i just do it for the sound. When i’m in school or in public i usually tap my fingers on my leg or hand so people don’t see me doing it.

Part of the reason I don’t like being in public much is because I can’t properly calm myself or express myself. I rarely ever stim openly around people as it bothers people and I get judged. Returning home feels like when you take your shoes off after a long day. A huge wave of relief washes over me as I can finally be me and take care of myself. When I’m at home, I stim even when I’m feeling normal. I do it unconsciously and sometimes just because it’s soothing. It sometimes feels like i’m living a double life. Neurotypical by day and autistic by night. In reality it’s not that fun at all, it’s extremely draining and i’m usually exhausted by the time I get home.

While I do struggle because of my autism sometimes, I don’t mind being autistic. I’m not ashamed of who I am. Although I do get anxious explaining it to others, as most people don’t understand autism. I’ve had a few people not believe me in the past, as I pass as neurotypical sometimes because i’m good at masking. I also worry about the persons existing biases on autism. There are a ton of people who use autistic or the r-word as an insult, because to them autism means a person with lower intelligence. Which couldn’t be farther from the truth.

I’ve had many positive and negative experiences when it comes to explaining my autism. While people tend to be kind about it most of the time, most people are uninformed about the disorder, which can lead to them saying hurtful or insensitive things without realizing it. I’ve had people tell me they’re impressed that I can act ‘normal’, or that I’m so brave for just existing. The truth is I don’t feel brave at all. I’m just living my life like everyone else. It hurts to hear people go on about my bravery for just doing the exact thing they are. It makes me feel like I’m viewed as a lesser being when all I’ve wanted my whole life was to feel equal.

If there’s one thing I want you to take away from this article, it’s not to judge others. When you see someone acting in a way that you deem out of the ordinary, remember that they may be going through something. Everyone has their reasons for doing what they do, and if it’s not hurting anyone there’s no need to criticize them.