I Have Asperger’s and I Read Your Comments Too
[Image] A woman with short brown hair, looking upward and placing her finger on her temple.
[Caption] I have a host of mental differences, including Asperger’s Syndrome, a form of autism.
[Image] A series of images with accompanying text. First, two hands, with open palms – “Gestures.” Next, a pair of lips – “Facial expression”. Next, a series of exclamation points and question marks – “Tone of Voice”. And finally, a man with a finger on his mouth, looking thoughtful – “Social Rules”.
Man [thought bubble]: To hug or not to hug
[Caption] I think of Asperger’s as being without social language: I don’t always get the cues.
[Image] The back of the woman’s head. She is facing a crowd of silhouettes.
[Caption] Because of this, it’s hard to make friends.
[Image] The woman, off to the side of a crowd, of silhouettes at which she is looking. The silhouettes are all facing each other. None are facing her.
[Caption] I used to daydream about what I would give up for friendship. I felt like I would trade everything just to be accepted, liked, loved and valued. Anything to not feel so alone. But what I want most is to be worthy of friendship, just for being who I am.
[Image] The woman facing another woman with long hair and bangs. The long-haired woman looks upset, and her hands are raised expressively.
[Caption] I have my strengths. I can empathize well if people open up to me.
[Image] The short-haired woman sitting in front of a crowd of silhouettes, holding an open book. She is smiling. Bookshelves in the background indicate she is in a library.
[Caption] I’m great at telling and understanding stories. Books will always be on my side.
[Image] The short-haired woman sitting in front of a computer, with her hand on the mouse. One the screen is the headline “Autism.”
[Caption] It’s a struggle, but I’ve found a way to function. Life hurts, but I want to live, and live well. I try to get as much information as I can, and research autism to learn more.
[Image] The computer screen. The sub-headline reads “Topic” and six sections show six different forum posts.
[Caption] But what I read hurts.
[Image] The computer screen, now zoomed in so the text on the screen is clearly visible. The 6 posts read as follows:
? How do you know if your child with autism loves you?
Autism horror stories
? Why isn’t anything working? I want my son back.
! I can’t go anywhere with my children, and I can’t get a babysitter who understands. I feel like I’m in prison.
How do you get out of the house?
My daughter will never be independent. I worry about what will happen when I die. Who’s going to take care of her?
[Caption] I find stories of family members of people who have autism, and how they are affected.
[Image] The short-haired woman holding her head and looking distressed. She is looking down on a faded reproduction of the forum posts, which are larger than her.
[Caption] It’s rarely the person who has autism that tells the stories. People like me are treated as objects of inspiration and burden. We don’t mean to inflict pain on those who love us, but we are the center of their pain. And caretakers should be allowed to express their struggle too…
[Image] Closeup of the short haired-woman, in profile, looking distressed and sad.
[Caption] But it hurts reading these stories.
[Image] The short-haired woman, in her chair in front of the computer. She has her knees pulled up to her chest, and her arms are wrapped around her legs. Her eyes are closed.
[Caption] I might not be “normal” but I’m human. I read. I feel.
[Image] Closeup of the short-haired woman. Tears are streaming down her face.
[Caption] How could they think that none of us would read this? Pages and pages about how my very existence is a burden? I listen to your stories and all I want to do is make it better, be better. But I don’t know how to make you happy.
Woman: I’m sorry. I’m sorry for being me.
I have a host of mental differences. I suffer from depression and anxiety. I experience emotions more intensely than my peers. But the diagnosis that I most identify with is Asperger’s Syndrome, a form of autism.
I think of Asperger’s as being born without Social Language. By social language, I mean mostly non-verbal communication (facial expression, gesture, tone of voice), but also social niceties, like small talk. Social language gives context to spoken words, and reveals others’ emotions. Because my knowledge of this language is so uncertain, I’m constantly second guessing myself, trying to pick signals I barely recognize and follow rules that I don’t know.
I think I cling to the diagnosis so much because it speaks to the loneliness and isolation I’ve felt so often. There were plenty of years when I had no friends. I used to play this game in my head: What would I trade to have friends? The natural beauty my mom said I had? My singing voice? My math skills? My ability to walk? My ability to read? Use of the left side of my body? The right? Sight? Hearing? Anything to not feel so alone. It was a stupid game. I felt like I would trade everything just to be accepted, liked, loved, and valued. But you don’t get to trade, and what I wanted most was to be able to have all those things…without having to change a single thing about myself.
I’ve been in therapy since I was thirteen. In therapy I learned a way around social language. I can talk about deep things fairly easily. I can listen to people talk about emotions and ask for clarification gently. I can understand emotions once people are really talking about them, once we’re past the superficial. I am training to be a psychologist because, when we’re all speaking close enough languages, I can empathize well. I also learned that I can tell and understand stories. Books will always be on my side.
I am currently pretty much friendless, but I have hope for the future. I am not normal, but I’ve found a way to function. Life hurts, but I want to live and I feel like I can actually live and live well.
I go online because it’s easier online, and I research autism because I want to learn more.
But what I read hurts.
I find stories of mothers and fathers and sisters and brothers of people who have autism. The person who has autism rarely tells the stories. The stories focus on impairments, and how the surrounding family is affected. Even the awareness campaigns feel like allies and caregivers reaching out to more allies and caregivers. It does not feel like people with autism coming out to the world and trying to find more people like us, people who speak our language.
The stories I read often describe people who cannot speak for themselves. These voiceless humans are treated as objects of inspiration and burden – objects, not people. The families have suffered, and though we don’t mean to inflict pain on them, we are the center of their sufferings. It is understandable that we would seem – even to those who love us – as pitiful, as selfish, as lesser, or weak. It’s true that caretakers can feel this way, and they should be allowed to express their struggles too.
But it hurts, reading your stories. I’m human. I read. I feel. I function. How could you think that no one like me would ever read your stories? How could you think that we would never know? How could you think we wouldn’t get angry, reading about how we’re burdens on your otherwise normal life? How could you think that we wouldn’t feel ashamed?
I listen to your stories and all I want to do is make it better, be better. But I don’t know how to make you happy.