Curing Autism Would Erase Me: Discouraging Ableism, Encouraging Advocacy

As a child, the world seemed so alien to me. For some reason, everyone else appeared to have an internal rulebook of norms that I didn’t. Eye contact felt extremely uncomfortable, but it was so important to everyone else. No one liked to play like I did. I could read words by the age of 2, but I struggled to dress myself. I walked on my toes and made repetitive motions. I couldn’t make friends and received strange looks from both kids and adults.

At the age of 6, I received a diagnosis—Asperger’s syndrome—which is now classified as autism spectrum disorder (ASD).

Enduring Bullies

From the outside looking in, people may think, “Wow, your life must have been so hard as a kid.” To be honest, in “being myself” I felt perfectly content and happy . . . but the world didn’t feel the same way.

I didn’t feel like there was something “wrong with me” until I got a bit older and began to face relentless bullying in school. The bullying made me realize that no one else was like me—not that I could see. I remember reading so many inspirational quotes that encouraged people to be different—but those words seemed to apply only to neurotypicals. If you were autistic, being different was “bad.” I was bullied for being “weird”; I was often called “retarded” and referred to as a “freak.” Although I was very smart, I believed these negative words—and, as a result, I lost all confidence in myself. It felt like my bright future wasn’t possible because my fate had already been decided—by the world, not by me.

Overcoming Barriers

I started to hate the part of myself that I was once happy with, and I worked hard to erase it. I was very observant of my neurotypical sister (and other girls my age) and began to mimic different things they’d do so I’d appear more “normal.” After being ridiculed for stimming, I remember telling myself I’d never do it in front of anyone again, but I still stimmed in secret.

People say individuals with ASD hate socializing and don’t want friends, but that’s not true. What I hated was not being able to be myself in order to socialize. I developed anxiety and depression.

I grew up in a low-income household and attended a Title I school in rural southeastern Alabama. Ambition in a small town is easy to lose. My parents were divorced—my dad was living in Ohio and was a hardcore Ohio State fan. My lifelong dream was to leave Alabama and attend The Ohio State University, but it seemed almost impossible. I couldn’t get through a math test without shutting down, we didn’t have money, and I didn’t have the confidence to even dream about it.

That is, until I discovered band in seventh grade. Clarinet easily became my new special interest. I practiced and played every day until my mouth hurt. And in eighth grade, my band teacher asked if I wanted to audition for the Alabama All-State Band. I suddenly felt like I was good at something. Although I “only” made the District 8 Honor Band (instead of All-State), my newfound love for playing the clarinet in a band of my peers ultimately restored my confidence!

Bit by Bit: Perfecting the “Pieces”

I always had the tendency to rush through pieces of music without working on my mistakes first. In many ways, I likened playing the clarinet to talking. When a piece of music was new and difficult, I needed to slow down and break it up into smaller pieces. The same goes for speech—and all other aspects of trying to reach your goals.

I used this approach throughout high school—and not just in band. By practicing one music piece at a time, I met my goal of making All-State every 4 years. And by working on one small part of an academic subject at a time—mastering it and only it before moving on to the next part or the next subject or the next class—I met my goal of making straight As in all of my classes.

But that perfection became a slippery slope—I became obsessed with perfection as a way to prove to the ever-critical world that I was capable. My mental health was slipping again, and I didn’t apply to my dream school because the fear of rejection plagued me.

From Data Entry to Dream Come True

Instead, I started my college journey at my local community college, where I received a music scholarship. In Summer 2016, I completed my associate degree magna cum laude and bought a plane ticket to move to Ohio—against my mom’s wishes. She wanted me to stay close to home where she could continue to protect me from the world. It’s common for parents of autistic children to fear major life steps, such as their child going off to college or leaving the home in any way. That fear comes from a place of love, but it can hold autistic people back from fulfilling their dreams.

I had to leave—my mental health was in shambles. I worked hard on my professionalism and pragmatic skills in order to leave and get a decent job. I thought that if I left home and began living my dream of attending The Ohio State University, my mental health would get better. It didn’t. I was diagnosed with severe depression and generalized anxiety disorder. The things I’d previously loved no longer sparked joy. I masked my autism to the point where I didn’t even know who I was anymore.

In 2017, I got a government job in data entry at the courthouse. I entered traffic and criminal tickets into the system. It was a safe job—one with healthcare. But it wasn’t my dream job. I didn’t know how I was going to be able to fulfill my dream while also working a full-time day job. I called the Department of Speech and Hearing Science at The Ohio State University a few times, trying to see if I could find a loophole that would allow me to keep my job and go to school. “Classes are only available from around 8 a.m. to 5 p.m.” My job was from 7:30 a.m. to 4:30 p.m., Monday through Friday. My heart sank, and my depression worsened. I began to have panic attacks frequently. I felt so unhappy.

One day, I decided that something absolutely had to change. I felt terrified but remembered my old method of doing things bit by bit, one small “piece” at a time. I made some changes to improve my physical and mental health. I started to make a routine of exercising and eating healthy meals. This restored my self-confidence. I began to tell myself that I would do whatever it takes to go to school.

In Summer 2019, I submitted my application to The Ohio State University. I submitted it before I even knew how I was going to work and do school simultaneously. When I got my acceptance letter in September 2019, I pleaded with my HR director to let me work a job on a different shift so I could attend school. It was difficult. “I recommend you find a school where you can go at night” was the response from my director. I decided to take matters into my own hands and ask the management of different departments if I could work the late shifts in their departments. Another department agreed that I could work their (very much un-coveted) graveyard shift—midnight to 8:00 a.m.

New Reality, Plus Some Familiar Fears

I started my first semester at Ohio State with only 7 credit hours because I didn’t think working and going to school full time would be possible, even after having rearranged my entire schedule and routine. I couldn’t get enough sleep during the day; I was falling asleep in random places around campus. Occasionally, I felt overloaded. Everything was so new and terrifying. I had no real plan of how I was going to establish myself. I was no longer in an Alabama school around familiar people.

My goal has always been to serve as an advocate for autistic people, but I was worried: What if autism would be the very thing that held me back? Often, it doesn’t feel safe to be openly autistic. Prior to being a student at Ohio State, whenever I would reveal my diagnosis to employers or to random people in my past, they’d respond by treating me differently. They would shift their thinking and their attitudes toward me, and all of a sudden, they’d see me as not capable of doing hard things. Some even doubted my diagnosis! The ableism shown by people in my past made me fear the same thing from people in my present.

Overcoming Ableism

Ableism is a real thing, and it’s important to know that I didn’t “overcome” autism; I overcame ableism to get to this point. The world forced me to lose myself just to make other people satisfied and comfortable. I worked so hard to appear “happy” and “normal” on the outside while feeling like an empty shell on the inside. I forced myself to make eye contact with other people, even though doing so sometimes made me severely uncomfortable. I achieved 10th place clarinet in the state, graduated second in my high school class, and earned Deputy Clerk of the Year during the first year of my courthouse job—yet the stigma of autism is enough to still attempt to hold me back.

I reached out to, and joined, the Language Assistive Technology and Autism (LATA) lab at Ohio State’s campus because the topic of autism is so important to me. Autism isn’t only part of me—it is me. “Curing” autism would erase me. Advocacy is so important, and I’m making it my mission to be anti-ableist and pro-disability rights; so in the future, autistic children can have the same access, rights, and respect as typical people do.

This is the true pro-neurodiversity movement. I’m not here to warm the heartstrings of people and become only an inspiration. I’m in the CSD field to make a change and accomplish my dream so others can accomplish theirs without the barriers of ableism. I was lost, and now I’m rediscovering myself. The world doesn’t seem as alien to me as it used to be, and I know I’m capable of making positive changes in the world around the topic of autism because of my own experiences. I’m very grateful for the paths that have opened for me—paths that have made this new life, this new and better way of being myself, possible.

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