by Nora Ruth from A Heart Made Fullmetal
S is for Stigma
Autism is kind of like my own personal Instagram filter. I view the world through a different lens. I don’t see things like anyone else does. It changes the way I process information. It means the world sometimes looks fuzzy while under any other filter, it would be clear. It means to me, it’s black and white whereas to someone else, there’s colour and other variables. It means I sometimes flap my hands or cover my ears in public. People look at me like I’ve suddenly grown sparkly glitter wings (which, let’s be frank, that would be kinda epic, now wouldn’t it?) or like they’re going to catch The Autism from me. I sadly don’t have sparkly glitter wings and you won’t catch autism from me,
Being autistic has a stigma. It seems there are distinct stigmas. The first one is the “you are so high functioning/you are not like my child” stigma. The “but you are TALKING to me” stigma! This stigma diminishes the very real struggles we have. Because even though we’re typing on our laptops, even though we’re living on our own – we have very real struggles. Going from my own life, for example, I can’t use the stove without risk of starting a fire (true story: I once melted a burner) and I need help doing the dishes. I’m prone to just wander away and forget about a candle. I got straight A’s my freshman year of high school, and yet my IQ sucks. I’m a college drop out – I have over four years of college under my belt with nothing to show for it. At this point, gainful employment is a pipe dream.
With the “so high functioning” stigma, a lot of it screams “Nora, you’re too smart for this.” “You’re smart enough to figure out how to do this on your own.” Which are things I’ve been told. I’ve literally been told by my in-home aides, that is, the people who are paid by the state to assist me, that if I just believe in myself, I can do tasks that are cognitively impossible. It screams that I am not autistic enough to count as needing help sometimes. It says that if I just believe in myself, I can do the thing. Well, I can believe I can grow sparkly glitter wings all I want, but I’m not going to grow them. Likewise, I’m not going to be cognitively able to do certain things. And there is nothing wrong with that!
There’s the stigma that we don’t care. That we’re not compassionate. That we’re soulless creatures. Many of us are among the most compassionate people I’ve ever met. We fight for the rights of everyone. We believe in equality. We are loyal. We are friends. We join hands and fight for injustice. We are amazing people, if you just take the time to get to know us. We’re just as varied as people who are not autistic are. You just have to be willing to get to know us.
There’s the stigma that autistic children don’t turn into autistic adults and instead become adult children. Well, no. They’re still adults. They may need different supports, but we are not adult children. We are adults. We deserve legal rights. Your autistic child will turn into an autistic adult. We were like your child once, no matter what you claim. No matter what functioning label you slap on your child, no matter what you say in front of them claiming they can’t hear it or they don’t understand, they do. We know.
There’s the stigma that non-verbal/non-speaking (I dislike those terms. I prefer to specify “Doesn’t talk with their vocal cords” but you know, that’s a different post altogether!) don’t lead meaningful lives or that they don’t have voices. They do! Everyone has a voice. It’s just a matter of choosing to listen to it. It’s just a matter of accepting that maybe they are using their hands or their bodies or their iPad. It’s still a voice. It’s still valid.
There’s the stigma that we hate all neurotypicals and that we hate parents. We don’t. We don’t want parents to shut up. We don’t want them to go away. But we want them to listen. We want them to be a part of their child’s life with them, not for them. We want parents to think about what they say before they put it in a public forum forever. Their autistic children may see it some day.
There are all these stigmas. And as an autistic adult, what can I do?
I can shatter them. I can smash them. I can say no more.
I continue to speak out, against these stigmas. I continue to write about how autism is my Instagram filter, and there’s nothing wrong with that. I continue to rejoice in the person I am, rather than mourn the person I could be. Does it suck that my life didn’t turn out how I planned when I graduated high school ten years ago? Hell yeah! But you know what? It doesn’t mean my life isn’t beautiful now. I can accept that I’m an autistic adult and I’m neither high or low functioning – I am living. I am thriving. I am soaring in a world that wasn’t made for me and making the best of it.
I flap in public, because screw the stigma. I bring my stuffed animals and fidget toys, because they aren’t hurting you and they make me happy. I play on my phone or my laptop in the middle of convos, because I’m still paying full attention to you but it calms my anxiety. I script and I make little noises and I tap my foot. I do the things that make me happy and are such a big part of me. Because you know what? Your stigma doesn’t matter anymore. Your stigma doesn’t define me. The only thing that defines me is me.
Being Autistic is who I am.
This is part of a series of posts addressing themes from the neurodiversity movement and paradigm which will be published during the course of April 2016. To read the rest of the posts, please click here.