My alarm chimes, and in a drowsy state, I turn it off and attempt to get myself out of bed. I remember how long it took to find an alarm that would wake me, but wouldn’t hurt my ears. For as long as I can remember, a lot of sounds have caused me pain. I don’t quite know how to explain it, but I can’t deal with them. As soon as I hear one, I shut down and I can’t focus. Everything just spirals and spirals until I break.
I pick up my carefully chosen outfit and begin to get dressed. I have to pick out what I’m going to wear the day before because I can’t function without a plan. For example, the night before a presentation, I’ll pick out a specific dress (a long one, so I can wear leggings or tights to protect my legs) and a sweater to match (sweaters, like magical armor, protect me in a way I can’t describe).
I continue with my morning routine, one I’ve practiced for years. I can’t even begin to imagine deviating from it without triggering a spiral of stress. Occasionally I’ll go out for breakfast (I don’t normally eat until the afternoon because of the medications I take), but even then it’s planned in advance. Once I’m dressed, I greet my two cats and head downstairs to take my meds. I take a lot of medications, especially for someone my age, but I’m used to them. It is because of them that I cannot eat breakfast, or on most days, lunch. After I’ve finished taking them with water, I call for my mother to drive me to school.
It is a B day today, which means I need my instrument, so I grab it on my way out of the door. Once in the car, I plug in my headphones and press play on my favorite playlist. I’m not sure why, but I usually can’t listen to whole songs because I compulsively change them. As it drives my mother crazy, I am required to use headphones the majority of the time, which is all right by me. If sweaters are my armor, then headphones are my shield. They protect me from the noises that attack. Chewing. Bells. Rustling papers. So many common sounds I’m unable to deal with. Headphones protect me from it all.
Like a lamb to the slaughter (overused, but still true), my mom kicks me out of the car with only a few encouraging words, my instrument, and my school bag, and sends me to school. I brace myself, remembering my armor and shield, but also my sword — my instrument. As I step through the door, the battle begins.
I’m early as always, so I go to drop my instrument off. As I pass through the hallway, filled to the brim with people, I hear them. The words neither my shield nor armor can protect me from no matter how I try: “that’s autistic.” They’re said carelessly in front of me, and while they do not know I’m autistic, I still can’t help but wonder, why? Why is it an insult to be autistic? Why is a part of my identity so horrible? Do they even think about what they’re saying? Who they’re hurting? Do they even know what autism is?
Autism is a spectrum, and everyone who has it is different. As Kerry Magro said, “Autism can’t define me. I define autism.” There are common traits, yes, but autism affects everyone differently. Most everyone has their personal bias for what it is and what causes it, but in truth the cause is unknown. The Autism Society’s definition is “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others.”. I’m not sure how I’d define autism personally because I’m still deciding how I define myself. I have ASD, ADD, OCD, anxiety, and depression, which honestly songs like a bunch of alphabet soup, but each one is a piece of me whether I like it or not.
After my instrument has been put up, I walk to one of my “safe places” so I can either work on a bit of school work or draw. Today I choose to draw. It’s quiet, with the exception of the subtle music that my fifth block teacher plays before class starts. My headphones go in and I enter my own world. A world that a little bit later is interrupted by the flood students called to class by the bell.
Class begins and I follow along with instruction as though I were a “normal” student. I feel sickish and my head aches, but these are side-effects I’ve long grown used to. We’re doing a lab today in class, and immediately the spiral begins. Who will I partner with? I don’t have any friends in this class. Will I have to wear goggles (I hate the red lines they leave on my face)? How do I face my partner(s) and make conversation with them?
The teacher announces he’s choosing the partners, that this is more of an activity than a lab, and to turn to a specific page in our workbooks. A surge of relief comes, and calms the brewing storm of anxiety. The activity goes smoothly; luckily my partner is more focused on it than making conversation with me. Making and maintaining conversation with my peers is something akin to learning rocket science, extremely hard, but doable. I can’t comprehend subtle comments, sarcasm, and most jokes. I also can’t read people’s emotions, so I just unintentionally assume they’re annoyed with me. I often repeat things I’ve already said or obsess over one thing for the entire conversation.
The bell rings, and my next class is mostly a blur. I’m doodling on a worksheet, tuned out to the events until the inevitable once again happens. “God, can’t they just shut the hell up?” a student in my class calls out. I don’t even have to ask, I already know who they’re talking about. Across the hall are the special education classrooms and sometimes we can hear the students there. The teacher is quick to silence him, but they do not stop. All I can think is, “why?” I see when they’re passing in the hallways escorted by aids or teachers, and I see the looks and mocking they receive. That could be me, if I had been diagnosed earlier or not as careful to cover up all my differences. I’ve experienced mocking and such before, but not for those reasons. I don’t know what it’s like, but I’ve seen the effects. I can’t count the number of times I’ve seen my younger sister come home crying because of the cruel words of her peers. The peers who claim to celebrate diversity, yet take one look at my sister and her aide and throw words as if they were stones.
The rest of class is a blur, for I was simply lost in thought. The next thing I knew, I was in music class. With the eruption of the attempts to tune, I realized today was one of those days. Grabbing my things and trying my best not to attract any attention, I walked up to the teacher and told her I needed to leave. I was sent to a practice room. Out of all my sensory issues, hearing is the worst. I love music as it is what gets me through the day; however, when my ears and mind have decided they’ve had enough or that they can’t cope I exercise the ability to work in a quiet place. I have a pair of soundproof headphones (they’re one of my favorite things ever), but due to my fear of my peers I choose not to use them outside of the house. Carefully lifting my instrument up, I tune on my own as quietly as I can (while of course, stressing about whether my peers can hear me and if they’re making fun of me. A part of me knows that logically they can’t and they’re not, but my mind doesn’t care and will spiral anyways.). I practice a song I had worked on with my private music instructor and I let myself melt into the music. As I’ve said, my instrument is my sword. My sword and I are fighting away the demons of my mind, forcing them to leave me for a while.
The bell rings. My instrument gets put away and I head to one of my “safe places” for lunch. I don’t typically eat lunch, so it’s really just a half hour of sitting and playing my favorite game on my phone. Today however, I begin to ponder on why I feel so alone. I don’t tell most people, whether friends or not, my diagnoses. I’m too afraid they’ll just reject me. It’s not a fear without reason, for I’ve heard the common response “oh you don’t look like you have _____” or “You’re joking, right?” Deep down I know my true friends won’t actually reject me, yet I can’t bring myself to tell most of them (I’ve told a couple with mixed results). I have friends who know what I have and some of how it affects me, but I’ve never met another person with autism or with any of my other alphabet soup diagnoses. I don’t know how I’d react or what I’d say, but I kind of wish I had someone who got it (my sister is young and not very verbal).
The last block of the day is pretty easy-going and not much happens. My ADD meds start to wear off, so I eat some snacks from my lunch and drink the strawberry milk, my favorite lunchtime companion. I get a few weird looks. It’s understandable, I am eating lunch when it’s clearly not lunch time.
As for why I’m writing this, at first I wasn’t sure myself. I started it for a website I currently frequent, but it’s become something more personal than I originally imagined. I was complaining to a friend about how my school isn’t doing anything for Autism Awareness Month; I was overheard and asked to write this. If you search on the internet for articles written by teens with autism, you’ll likely find what I found (unless you are miraculously lucky), which is a bunch of stuff by and for everybody else. Most articles were for parents of teens with autism, parents of kids with autism, and a few written by actual people (adults) with autism. None of them were written for or by teens.
I know there are others besides me and I can’t speak for them as to why they’re not sharing their stories, but I can speak for me. I’m tired of having to hear a part of my identity being used as an insult or as a joke. It’s not. I’m tired of seeing people who are different because of their disabilities being mocked for it. My autism pretty much controls my life, for better or for worse. I’ve spent many therapy sessions having to learn how to be “normal,” when I should be learning to love who I am. I have to hide so people don’t treat me like I’m different. Is that truly funny? Is it worth a couple laughs to choose “autistic” or “retarded” to insult someone? Pick a new word. Educate yourself.
Stop staring or bystanding and start standing up. Actually embrace the diversity most of you claim to. Learn that those with a disability like me are people first and we deserve to be treated as such. They deserve your respect and they deserve to be accommodated so they can have equal opportunities. Throw your pity and taunts out with the garbage. And at the end of the day, autism is what I am, but not who I am.
Getty photo by image source.