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Autism Awareness Month | Life, Before and After

By Shade Ardent

Lately, my life is divided into two categories: Before Autism, After Autism. While that’s not precisely accurate, because I’ve always been autistic, I can think of no other way to describe it. The Before is a welter of confusion and missed opportunities, intertwined with bewildering successes in social interactions. The After, when I was labeled autistic, has become a journey of self-discovery, of finding permission to be myself. It’s been a journey of learning all the ways in which I’m autistic.

Even though the medical community would like us to think so, autism is not made up of a list of deficits and problems. It’s a neurological difference in how the brain is wired. At first, when I found out I was autistic, I thought that meant something was wrong with me, that I needed to work harder to overcome the autism. Then I started reading things by other autistic adults, and found that there is nothing wrong with me at all. I need no curing; I’m just different.

Before I knew I was autistic, I stumbled through the world, through social interactions with the knowledge that I was missing something, but unable to quantify what it was. I just knew it hurt. It hurt to try to connect with people, to meet their eyes. It hurt when I failed to pick up on the subtleties of body language, metaphor, and facial emotions. Their laughter hurt; the realization that they were being mean to me hurt. Often, I would stop trying because it was so painful.

I had my successes, times when I connected and made a friend, but those were just as confusing to me as the failures. Sometimes it was worse, because I would be constantly waiting for things to fail. It was hard to enjoy and trust a friendship while waiting for it to fail.

When I was labeled autistic, suddenly everyone knew it.


“I started reading things by other autistic adults, and found that there is nothing wrong with me at all. I need no curing; I’m just different.”


“I always knew you were autistic.” “You’ve always been different.” Everyone had their opinion as to my difference. But I was still left outside, wondering why no one had told me. Or, even more importantly, with them knowing, why they didn’t make allowances for my being autistic, and learn to bend with the differences in me.

I’m left feeling shy and ashamed of my differences. That I have no right to ask for an accommodation, because I can “pass” just enough on the surface to not seem autistic. I’m left feeling like it’s selfish of me to ask anyone to bend, because I should just try harder to acclimate to this world filled with allistics.

From the time I was a child, I found myself reading books, and later watching movies, to try to understand what the interactions between people were like. I’d make note of what was said in certain situations, and then try to apply it to my own life. It had varying degrees of success. I was a foreigner in my own culture, grasping for a language I often barely understood.

I used to think everyone struggled to talk, to communicate. That they all had to rehearse their words, and hope they weren’t missing some sacred social custom that could drastically change the meaning of the words being spoken. Then I found out that I was autistic, and that this struggle was common to autistics. Suddenly I belonged somewhere. Suddenly I made sense.

Talking is like approaching a thick glass wall. Everything is blurred beyond it. Past that wall is where all the word-communication happens. Outside the wall, that’s where all the people are. And I am trapped with my words on the wrong side of the wall. They flit and hover, dance and crawl. They are colors. They are sounds. They are myriad sensation.

A good day means that there is a small crack, a hole where I can line these wayward bits of meaning up. I can then shove really hard, and hope it works. Some pieces of them make their way to the outside. Some pieces of them lay littered on the ground, remnants that didn’t fit. When I’m excited, the hole can be even smaller, or even disappear. When I’m overwhelmed or tired, the wall is so thick, that there is no way to make those words happen. At that point, they pile up behind my teeth, behind the wall. I drown in a sea of things I’d like to say.

When I first discovered the internet and its text medium of communicating, I felt like I’d found an entirely new world. Suddenly, all the words I’d struggled to say came flowing from my fingers. I felt less alone, less outside, less alien.

While others embraced the abbreviated form of speaking through text, I unfurled. My cramped language when speaking became expansive, and more coherent. I stopped stuttering, I stopped tangling up my words and syntax. I stopped all of that. Text became my language of preference. The internet grew, new means of interacting sprung up, and they have been largely text-based.

It has leveled the playing field for me. For me, speaking aloud is the shortened method, and the text medium is where I can relax. Time slows down, and the words expand. I can see ideas more clearly, find my way through the characters lined up on the screen, making words into thoughts. Emotion is muted in this medium, making it even easier for me to figure out what someone is saying.

I can take them at face value, because if they were yelling, it’d be in all caps. If someone were feeling aggressive, their text would communicate it. The flatness of the medium means that it’s hard to gauge someone’s tone. But since this is taken for granted, it’s not considered rude when I ask someone what they are conveying. Given that text is also a slower form of communication, there is time to ask more questions, and formulate one’s answers carefully.


 

“I drown in a sea of things I’d like to say.”

 


I have for years relied on this medium to connect with people and form deep friendships. And while I’ve known in some distant way that I would not have been able to form these friendships in three-dimensional space with verbal and non-verbal communications, I couldn’t admit to myself just how much I needed this form of speech. I had internalized the belief that the internet was for “fake” friendships, that only 3-D friends were considered real. I had come to believe that even though these friends I had made online were the ones I felt closest to, that these were not real enough to count. It made me feel isolated, fake, lonely.

I didn’t realize that for me, even though I am a speaking autist, I rely on a form of AAC (augmentative and alternative communication). For some reason, I couldn’t see it. I had this idea that AAC was only for non-speaking persons; that, since I was capable of using my voice to communicate, I was just being lazy by using text to form relationships, to communicate my thoughts. Until this week, when I suddenly grasped the idea that I am using text as an AAC.

AAC is a form of communication that allows a non-speaking person to convey their thoughts to other people. It gives them freedom to express themselves, so that others do not continue to speak for them. With the advent of the internet, tablets, and smart phones, AAC is becoming more and more accessible to people. No longer do they have to rely on clunky expensive equipment that sounds robotic. They can choose an app from the app-store that adequately suits their needs. My AAC is text, texting, writing, messaging.

I am able to relay my thoughts in this manner more effectively. There is less noise from all the non-verbal cues. I don’t have to try to get around the ambient noises in the room, in order to listen to the person speaking, and then try to line up a reasonable reply that makes sense. I don’t have to work to understand each facial expression, and match that against tone of voice, words, and phrasing to see whether the person speaking means what they are saying, or whether they mean something else.

And it follows that if it’s valid for me to use this medium to communicate, that the friends I’ve made are real too. So today I’m going to use text to communicate. Because it’s okay to need help talking, and it’s okay to use a form of AAC if it helps me. I will talk to my real friends via text, and I will enjoy the closeness that is there. I’m going to acknowledge that I need text as an AAC, and that my friends are real.

Bio:

Shade loves photography, Legos, and cooking. They have a fierce need to express truth and kindness to the world through written and spoken word.

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