What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Julia.
Listen—most of what you think you know is wrong. Rhetoric about autism focuses on parents, siblings, caretakers—the “burden” of an autistic person’s existence on those who love us. Very few people are willing to listen to our voices, read our words, or allow some of us access to technology that can assist communication. We are not silent so much as we are silenced, and non-verbal does not mean non-human. Autism is not an epidemic. There have been autistic people as long as there have been people. Many well-known historical figures are speculated to have been on the spectrum by historians and psychological professionals—some of the most notable include Thomas Jefferson and Albert Einstein. Far greater in number, though, are the autistic people of past generations who didn’t make it into the history books—the eccentric elderly uncle who collected baseball cards and never got the hang of using the telephone; the 18th century farmer’s daughter who never spoke, sitting day by day at the spinning wheel, the repetitive motions of her hands helping to provide for the family who provided for her. We’ve always been here, but before labels we could more easily disappear into the background. The rate of autism diagnosis is what has increased, not the rate of autism. Autism is not a missing puzzle piece. Imagine that you received a puzzle as a birthday present, and when you had matched the colors and shapes you realized that the image was not the seascape depicted on the box, but instead a cartoon castle. An entirely different picture, but still, in its basic nature, a puzzle. There is nothing missing from our minds, and our minds are still human minds; their neurological pathways and their thought processes simply fall together in different ways. Autism is not a thief that steals children in the night. We are not changelings, we are ourselves. You can’t turn back the clock and recover a phantom person who never existed in the first place. You can train a person not to act autistic, but they are still autistic; they are just constricted, suffering, made to feel that they are broken for being themselves, wholly. Autism is not a curse. Sometimes, it can be a blessing. When I flap my hands in excitement, the self-stimulatory motion sparks my feelings further, allowing me to express and exacerbate my feelings. Quieting my hands to conform to the norm is like not being allowed to laugh when I am amused, because laughing is wrong; it’s like forcing fireworks to un-explode. When I’m upset, rocking my body back and forth slowly lulls me back to calm. Keeping myself rigid is like not being allowed to cry, because crying is wrong; it’s like trying to still the tides. When I listen to music, the chords vibrate through my bones and inside my brain; I love Tchaikovsky because he makes me feel like I am flying, or falling, or floating. Being autistic helped me love words and shape them to my own ends. Echolalia is a beautiful word: it comes from Greek, the name of a nymph and the word for speech. It means catching hold of a word that you have heard or read and repeating it. Autistic people sometimes echo the end of other people’s sentences. I get words and phrases stuck in my head and on my lips; I mumble them under my breath over and over until I can find a way to write; I write poetry. Sometimes when I am upset I can’t find words to speak at all, so then I write. Autism does sometimes mean that I suffer. I am told that I need to understand other, “normal” people, to learn the way their minds work so I can walk and talk and look like one of them. Other people do not try to understand me. The most common forms of expression are the standard, and there is no room for difference; there is no room for me. No one thinks about why I express things as I do. I have to work constantly to understand, to change; anything else invites criticism or abuse. No one works to see things my way, to accept the way I am, to let me live on my own terms instead of pushing me down. Sometimes people say labels do more harm than good. As a child, before I was diagnosed, I was called a freak more times than I can count. I would rather be labeled autistic than a monster, than a problem to be solved, than a statistical anomaly, a burden, a tragedy. I have been told, casually, in passing, by people who didn’t know I was autistic, that they would rather be dead than have my disorder. I have been told, casually, in passing, that I would never be asked out on a date; that nobody would ever love me. I have been told, by my brother, to walk a few paces away from him in public so people wouldn’t know we were together. I have heard my brother tell another boy that he wasn’t my brother; we just had the same last name. I have never understood why it is us who are made to feel guilty, who are told we lack empathy and compassion, when it is non-autistic people who behave like this. Listen—you can change this. Never assume that because someone is not a walking stereotype they cannot be autistic. Never believe that because someone, or something, is different it is wrong. Always try to understand. And above all, listen. Listen to our voices; read our words. Don’t believe everything you hear; most of what you think you know is wrong. And to my fellow autistic people reading this; to anyone for whom my words stirred something inside them that they don’t have a name for yet—you are wonderful, you are whole, you are not alone. Resources: Autistic Self-Advocacy Network (http://autisticadvocacy.org/) Autism Women’s Network (http://autismwomensnetwork.org/) Parenting Autistic Children with Love and Acceptance (https://autloveaccept.wordpress.com/) About the author: I am an autistic college student. I was diagnosed at age seventeen after years of research and wondering. I also have ADHD and anxiety. I’m a Christian, a feminist, a choral singer, and a history major.