I am ok.
Because April is Autism Awareness Month, I decided to post accordingly. Last month, I promised to post more pieces pertaining to social justice issues and I would like to begin with my take on identifying as a person with a disability and how it impacts my experience at BSU. The views expressed in this piece are my own and are not representative of the BSU Honors Program community as a whole.
Today was difficult. I walked quickly back to my dorm room after class, head down, squinting from the brightness outside and avoiding eye contact with any passerby the whole way. The last thing I needed was an unexpected encounter with a friend or classmate; I didn’t think I had it in me to make friendly conversation.
A truck roars past me while I’m on the sidewalk, blowing my hair in my face. I cringe and tear up at the sound. I bite down hard on my lip and will myself to stay composed. A lot of things have gone wrong today.
In my room, I turn off the lights, close the blinds, and put on earplugs. I change into a t-shirt and try to reorient myself. I have 3 classes on Tuesday; the last one is three hours long. If I don’t rest in between them, I won’t have the stamina to meet people’s demands. Conversation is calculated, it takes effort. Looking people in the eye is uncomfortable and exhausting.
This is just one piece of one day in the life of just one person living with autism. When I was four years old, I was diagnosed with Asperger’s Syndrome, a neurological disorder characterized by difficulty with social skills and communication, repetitive, rigid thoughts and behaviors and issues with sensation and perception. Stories like these are pretty common in the blogosphere because they are completely accurate depictions of what life can look like on autism spectrum.
Unfortunately, the vast range of experiences and almost unfathomable internal diversity of people with autism is commonly diminished and essentialized. Public perception of autism is dominated by a narrative of tragedy where autistics are miserable and their existence damages families and burdens the public. Far too frequently, we are reduced to the stuff of somber commercials and billboards pleading you to help find a “cure.”
Every so often, I write and speak about my experiences because I reject this script; our humanity should not be simplified to fit everyone else’s expectations. Because I believe that myself and people like me are whole, I am sharing not only my struggles, but also the things that make me whole. To help neurotypicals* understand me and people like me, I try to draw back the curtain and invite them into my head.
At BSU, my disability is invisible most of the time. I could walk right by somebody and they wouldn’t know I have autism. Somebody with autism could walk right by me and I wouldn’t know it, either. At work and in class, I “pass” as neurotypical most of the time. That’s part of the challenge of high-functioning autism; the more successful I am at appearing “normal,” the less people anticipate me having difficulty with anything. But internally, I’m always working hard to compensate for the things I’m not wired to do.
I learned very early how and when to isolate myself to cope with overstimulation.
The autistic brain isn’t really optimized for processing sensory input, especially a lot at one time. As a result, people with autism have a lower threshold of tolerance for sensory input, making it easy to become overstimulated in the face of one too many stressors. I am no exception. In fact, I tend to schedule most of my day around avoiding being overwhelmed. I take the least crowded routes to class. If I don’t have a lot of time between classes, I get food at Bear’s Den and eat alone in my room. Tilly at max capacity is a sensory nightmare for me with all the ambient speaking, music, and smells, so I eat strategically when it’s at its least populated. I wear earplugs to study and to sleep. And when I sleep, I am nothing short of extremely particular about which blanket I use.
Though my sensory issues cause me a great deal of frustration, there is also some beauty in them. I am especially appreciative of the stimulation I find pleasant because I experience it vibrantly and intensely. When it’s bright outside, I think I see the sky a little bluer. When I sit in my dorm room and listen to the rain, I think that the sound might hit my ears more sharply. One of my favorite things to do is use the swing in my backyard because the sensation is extremely soothing. Still, even the good things are part of the game that is avoiding the bad.
My mother kept this chart on our fridge when I was a child to help me learn how facial expressions show what people are thinking and feeling.
When I’m not trying to process my environment, I’m usually trying to figure out people. Autistics by and large lack the innate social finesse of neurotypicals and the means to understand social cues. That’s why, in explaining the social challenges of Aspies**, we’re often compared to aliens visiting from another planet. For me, looking someone in the eye and going with the flow of a conversation are intensely conscious processes. The nuances of language like nonverbal cues, figures of speech and sarcasm are often lost on me. Though I have a theoretical understanding of all of these things, recognizing and reacting appropriately to them in the moment is another story. That disconnect can be very aggravating. Sometimes I don’t pick up on what another person is thinking or feeling, and I say the wrong thing. Naturally, I spend way too much time mentally critiquing my interactions with others long after the fact.
The actual speech patterns of people with Asperger’s are different too. We tend to use unusually formal, pedantic language. When I was younger, my vocabulary was sometimes isolating because my peers would mock me for using “big words” in casual conversation. More recently, it’s become something I love about myself because I can be articulate with ease and my friends [affectionately] joke about me being a robot. I can write impressive essays and fiercely debate with my classmates. When people don’t understand what I say, they usually just nod and agree. Things can really work out in your favor when you speak like a living SAT prep book.
At the end of the day, I’m neither thrilled about being autistic nor desperately wishing to be neurotypical. Like many other autistics, I prefer to think of myself as wired differently rather than neurologically inferior or other. While having Asperger’s presents many challenges, especially in college, I have an appreciation for the ways my brain is unique.
If your understanding of autism was ever limited to anecdotal knowledge or portrayals in popular culture, it can be difficult to understand why someone might want to deviate from the popular narrative that prioritizes struggle despite their very real pain and challenges. While I validate those challenges and see the importance of talking about them, I also don’t want to be constrained by them. I wrote this post to demonstrate that autistics are complex, whole, and valuable. Life with autism is, in fact, so varied and complicated that I couldn’t possibly encapsulate the breadth of experiences in one post. We are so complex that there is only one thing that I can say is true of all of us, and I will leave you with that sentiment:
I am absolutely certain that we have too much to give to the world to be mistakes.
For more information, visit Wrong Planet for articles written by high-functioning autistics about their experiences. You can also read up on neurodiversity or check out the Autistic Self-Advocacy Network.
*”Neurotypical” is a word often used in the autistic community to describe a person without autism in lieu of terms with negative implications of the autistic brain, ie “normal.”
**”Aspie” is a colloquialism for a person with Asperger’s often used in online communities for autistics.