Autism isn't a dirty word. It's a part of who I am, and I'm proud of it.
BY ALAINA LEARY
I’m sitting at my computer desk when the email appears in my inbox.
“We’re honored to invite you...” It’s my undergraduate university, asking me to appear as an alumni speaker at the annual Spring Gathering.
I already know what my friends will say when I tell them about it. “Wow, but you’re only a year out of school!” “I told you, you’re the most successful person in our class!”
I stare at the email, blinking several times just to see if it will disappear.
***
I was 8 years old when my second grade teacher told me that I would never graduate from high school. Scratch that. She didn’t just tell me—she told my mom, the principal, and the entire administration and management of my K-8 elementary school.
I had difficultly—writing, reading, walking up the stairs, holding a pencil, sitting still in class. I was told I would have to either repeat second grade, or join a special education class for third grade at a different school (because our school didn’t offer an immersive special education class).
I took the deal. What did it matter, anyway? I only had a few more years left in the education system before I’d inevitably fail out, if I didn’t drop out first.
***
Autism isn’t a dirty word, but it took me almost twenty-one years to believe that. What autism is, depending on the autistic person you ask: a form of neurodiversity, a developmental disability, a different way of looking at the world. What autism is: not a strict line between high functioning and low functioning. What autism is: frustrating, because nobody seems to want to learn what it’s actually like from people who have lived it.
Even after I decided autism wasn’t a dirty word, at twenty-one, I only told the Internet that I’m an autistic person. It was like shouting into a void. I practiced disabled pride online, but not beyond the safety of the internet. For four months, I blogged among a community of #ActuallyAutistic individuals about sensory overload, stimming, and special interests.
What autism is, depending on the autistic person you ask: a form of neurodiversity, a developmental disability, a different way of looking at the world. What autism is: not a strict line between high functioning and low functioning. What autism is: frustrating, because nobody seems to want to learn what it’s actually like from people who have lived it.
After four months, I published a post on my blog where I ‘came out’ as autistic, and I let my girlfriend and my best friend see it. They had known me for 8 and 4 years respectively, but this was the first time I said the word ‘autistic’ to them. And it was more like a whisper than a scream.
I check ‘no’ on the box for ‘Do you have a disability?’ on job applications. I didn’t sign up for my alma mater’s disability services while I was a student because I was too ashamed. I stumbled through a presentation to the Autism Community Club on campus to speak about my experiences during my senior year. I'm a member of We Need Diverse Books, and it wasn't until four months into working with them that I dared tell anyone I'm autistic and that I wanted to share #ActuallyAutistic voices for April's Autism Acceptance Month (re-titled by the autistic community from Autism Awareness Month). Even in situations where I'm likely to be accepted, I'm terrified to be truthful. That's how strong the stigma is.
Autism isn’t a dirty word, but I have many reasons to feel like it is. For most of my life, the education system and the health care system let me down. Growing up, I was taught in school to hide the things that make me autistic. I wasn’t allowed to stim (flap my hands, kick my feet, twirl my hair, dance) in classes, even when I was experiencing painful sensory overload or deprivation. I was forced on the balance beam over and over again, even though my comorbid dyspraxia made walking across it near impossible. Behavioral therapists made me sit on my hands while I talked to them about my creative ideas, so I would learn not to ‘distract’ anyone from what I was saying.
I was extremely lucky. I grew up with two disabled parents who allowed me to be my proud autistic self, even if the rest of the world didn’t. When my grandmother requested I sit on my hands and tuck my feet in while telling a story, my mom stuck up for me, and said I told stories better if I was allowed to move around. When my second grade teacher stopped allowing me to use the restroom more than once in a six-hour school day, my mom accidentally called her ‘the b-word.’ And then apologized to me. ‘Because,’ she said, ‘you shouldn’t use that word, even if she is one.’
***
By the time I got to college, I was all but terrified to be my true self around others. I had internalized years of “Quiet Hands” and people shutting me up when I talked about my special interests, like storytelling, publishing, and DIY crafts.
I often delegated time specifically to ‘being autistic,’ alone in my dorm room, where I felt I could be safe. This was when I would jump around the room, stim to music at my desk, eagerly write creative stories, and engage with my special interests for hours.
Autism isn’t a dirty word, but it feels like it is. That’s why I end up sitting in the shower, stimming and thinking about my ideas, after letting the water soak me for forty-five minutes, on a day when I haven’t had any alone time. I’ve been told it’s not okay to express myself the way that feels most natural. Stimming is not tertiary to what I’m saying; it doesn’t distract from my thoughts or my words. It’s a part of what I’m saying. When I flap my hands and kick my feet while talking, it’s the only way I can truly fuel the creative engine in my brain. Without it, I’m always somewhat limited; working on reserve energy from the last time I had a stimming and brainstorming session in private.
People throw around the phrases “high functioning” and “low functioning” a lot, trying to separate The Bad, Pitiful Autistics from the Autistics Who Are Basically Normal But Just Socially Awkward. What they don’t understand is that a majority of the autistic community has rejected functioning labels.
Autistic people tend to see symptoms more as a sundae bar than a spectrum of high to low: the toppings at the sundae bar are different aspects that may affect an autistic person, such as sensory overload or difficulty with motor skills. Not every autistic person has all the toppings on their sundae.
My autism doesn’t stop me from being a productive member of society, and yet, the number of unemployed autistic adults is higher than it should be. What stops us from doing our part and kicking ass? It’s not our disability. It’s living in a world structured on ableism. We teach our children at an early age that it’s not okay to stim, so they know they definitely can’t stim in the workplace. We teach our children to control their autism and fight what’s natural, and not to ask for accommodations when necessary. Cultures aren’t set up to deal with the autistic lived experience, so we, the autistic people, are left with a system that can’t accommodate us.
The social model of disability says that a flaw in society, not a flaw in the individual, causes disability. There are some things I can’t do because of autism or a comorbid disorder—like ride a bike or hold a pencil exactly right. But there are so many more things that I can not only do, but do well, if only I were in a setting where autistic people were supported; where I could take a fifteen minute break during a hectic project to stim while I brainstorm, or where I’d be allowed to stim and move around as I shared my ideas with my colleagues.
***
When I first started referring to myself as an autistic person, I was almost 21 years old, and still only used the term in my head or online, where no one could see it. It was a dirty word to me. I had suppressed most of my natural tendencies while around others, leaving me to experience painful sensory overload and eventually shutdown, which sometimes includes severe executive functioning loss and even selective mutism.
I’m a year out of college—a year into my graduate program and full-time professional working life—and I was asked to speak at my undergraduate as an alumni. I didn’t know, at the time, what I could say to an auditorium filled with young college students.
What I’m going to say, and I’ll say it over and over again until autistic people are respected, is that disabled and autistic aren’t dirty words. They don’t need to be censored out of the sentence. Autism is a part of who I am, and like many others, I want to be called an ‘autistic person,’ not a ‘person with autism.’ Because autism and I can’t be separated. We're part of the package deal. If you think autism and disabled are dirty words—well, then, you think I’m a dirty word, too.
Alaina Leary is a native Boston studying for her MA in Publishing and Writing at Emerson College. She's also working as an editor and a social media designer for several magazines and small businesses. Her work has been published in Cosmopolitan, Marie Claire, Seventeen, BUST, After Ellen, Ravishly, BlogHer, The Mighty, and more. When she's not busy playing around with words, she spends her time surrounded by her two cats, Blue and Gansey, or at the beach. She can often be found re-reading her favorite books and covering everything in glitter. You can find her on Twitter and Instagram @alainaskeys.