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.