Society still has a long way to go to fully understand and accept autism.
BY: MARY WILSON
Opinions Editor
I’ve often struggled to make and keep friends. Social interaction seems like a foreign language that I only have half of a dictionary for.
Though I can sometimes fake it, eye contact overwhelms me. When there’s a sudden change in plans, I feel a sense of anxiety that is hard to put into words.
I’ve only recently found a half-decent way of explaining it: it feels like all the air has left my body, like I’m deflated. I have trouble with imagining what other people would feel or do in certain situations.
I express grief in different ways: when my grandpa died, I didn’t cry until hours after I found out, when a character died in a book I was reading. I have several specific interests that I have an encyclopedia’s worth of knowledge in. I’m prone to depression and anxiety. When I experience strong emotions, I have to move: flapping my hands, rocking back and forth, bouncing my legs, waving my fingers in front of my eyes or tapping my hands on a desk. I have sensory integration issues; I’m a “sensory seeker”—essentially my nervous system is rarely regulated. I’m calmest when I’m cocooned in the sensory swing I built in my basement. I can’t sleep unless I have my weighted blanket or there’s a mountain of blankets on me. Flickering fluorescent lights, loud noises and some textures feel like my body is set on fire. When I get overstimulated, I’m prone to meltdowns and shutdowns.
This is what autism looks like for me.
Although society’s perception of autism is slowly changing, too many people still view autism as a bad thing, as something that needs to be changed, or fixed. Ole Ivar Lovaas, psychologist and the founder of Applied Behavioral Analysis said this about autistic children in an interview:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
ABA is still the primary method of treatment for autistic children. Its goal is to make the child “indistinguishable from his peers.”’
Autistic adults and their allies have long spoken out against ABA—some call it abuse. Some autistic adults report that they have developed Post-Traumatic Stress Disorder from the therapy. Some treatment programs involve the young autistic child in as many as 40 hours of therapy a week.
I feel lucky that I wasn’t identified with a diagnosis of autism until I was 12 years old, past the point that many autistic individuals are in ABA. Even though I escaped ABA, its ideals are so ingrained in everyday society that I can’t fully avoid it.
As a kid, I was constantly reminded to make eye contact. It didn’t matter that looking someone in the eyes sent my anxiety skyrocketing and made it hard to comprehend what was being discussed. I was admonished for talking about my special interests—those narrow topics I have a wealth of information on. I couldn’t express it until recently, but talking about my special interests—as a kid, my primary ones were NASCAR and the Harry Potter series—allowed me to understand the neurotypical, or non-autistic world. I could take a situation from one of the books and use that to help me get through a similar situation. In social skills classes, I learned the “right” ways to talk to my peers, and would practice them in stilted scenes with the other kids in my group. When people would talk about autism needing to be cured, I agreed, fully believing that I was fundamentally less than.
It’s been a long journey to heal from my internalized ableism—the view that disabled people are less than—and I’m still not all the way there. When I disclose that I’m autistic, the most common reactions I get by far is “I’m sorry!” and “but you can do (insert activity here)!”
You do not need to be sorry for my existence.
And it’s true—autistic people often struggle with tasks that neurotypical people can do easily. I can’t tie my shoes, for example. I can’t read an analog clock. I can’t make consistent eye contact. I struggle in social situations.
But that doesn’t make me any less of a person. It doesn’t mean my inherent worth as a human is lower. It doesn’t mean that I’m broken, or damaged, or that I need to be fixed.
I often hear from parents of autistic kids that “I love my child, but I hate his autism!”
My autism is a part of me. I cannot try to untangle myself from my autism. It affects everything I do, and that’s okay.
The friends I do have accept me for who I am, full stop. Although I struggle with neurotypical social interaction, when I’m talking with my autistic friends, I have an innate understanding of autistic interaction. I thrive on routine: with a few exceptions, I eat mainly the same foods, listen to the same songs, and stick to the same schedule every day. I’ve had opportunities to talk about my “restricted” interests—in recent years, I have presented alongside professionals as their peer. I’m prone to depression and anxiety. That sucks. But it also means that I have a wide array of skills I can use to help myself. Flapping my hands or jumping up and down when I’m happy is the best feeling in the world. It compounds my joy so that I feel like I might burst. Sensory issues are rough, but it’s because of my different expressions in sensory integration that I know what calms me down. I occasionally experience meltdowns and shutdowns, however, I’ve come to realize that these are not a ‘symptom’ of autism, rather, they are avoidable byproducts of our current system.
Autism can seem scary, and I’m not going to deny that autism can make life difficult. There are some autistic adults who don’t communicate verbally. Some learn sign language; others use a communication device or type what they want to say.
Some autistic people never learn to live independently. Some will need support their whole lives.
But that doesn’t mean that they’re less than, or that autism is bad, or that they need to be fixed, or that they need to “change” who they are. As a kid, I had teachers who doubted I would go to college. While it’s taking me a bit longer than most; I’ve been accepted to a four-year university on an academic scholarship.
We as a society still have a long way to go to fully understanding and accepting autism. But I have faith that we’ll get there. And it starts with small actions: maybe that means not admonishing a child for talking about her special interests. Maybe it means not judging when someone can’t make eye contact. Maybe it means not staring when a classmate flaps their hands or jumps up and down.
I’m autistic, and that’s okay.
