When you are little, you do not know you are different until you start school; at least that was the case for me. Before Kindergarten I thought my non-verbal way of walking through this world was normal. I also thought it was okay. And it is. But it took me nearly my whole life so far to realize that, and I still struggle to feel it deep down in my bones. School is like a microcosm of society. Every belief that is generally held in the real world is taught to us at a very young age, and it’s not until we reach University, when our beliefs are already mostly formed, are we encouraged to challenge those beliefs. My bones still feel like being Autistic is wrong.
“No Rose, you cannot use sign language. You have to talk. As your teachers we demand you are subjected to controversial therapy to make you talk or else we will bring in social workers to examine your parents.” And they did, and of course they found no abuse or neglect. They also did not try and help. I was not diagnosed until I was twenty-two. To sum it up, what I learned most in school was not math or science or languages, it was that I am not okay, that my being is not appropriate. Now, I’m twenty-six, I’ve been to University and I left it fundamentally because of this belief. I was scared to be myself on campus. If I took the mask off, I would be judged and excluded like I had my whole life, that is what I feared (I hope if you all saw me as myself, you would not judge).
Masking is a term in the Autism community that basically means acting “normal”. It is utterly exhausting. It is also something that I am very good at; that is what “therapy” taught me. It means smiling when it hurts to smile because I need my face to be neutral, more than neutral, an autistic look that makes people often ask me if I am okay. Yes, I am. I am just resting. It means holding myself extraordinarily tight like my soul is a sun and my emotions are the planets, and I must muster all the gravity I can so I do not fling off into space. That is what masking feels like when I am walking through campus with hundreds or thousands of other people. It means keeping my head down when my ears are bursting with the cacophony, and the visual stimulation makes me want to cry and not open my eyes ever again. Some people in the Autism community would be upset with me for telling you that my/our disability can feel painful. We are so desperate to belong, we often only tell you the good parts (and there are many), like how it makes us extremely compassionate to other’s feelings and often gifts us with a spark of genius. I don’t speak for other Autistics, I only speak for myself. So I want you to know that with this invisible disability, sometimes the world really, really hurts, and having to hide that pain is often too much to bear. I wish with this article to perhaps be a bridge between two worlds and to say to the ones who live in mine that you are not alone.
In our society, and the mini society of school and university, with disability there comes ableism (a term like racism, a hatred and fear of the “other”). My daily life includes aggressions from the micro to the macro. The most common microaggression I experience is this question tied to a look of disgust “Why are you not in school? Why do you not work?” And then when I explain I am Autistic it is the subtle head nod and silence that confirms they do not approve, that once again I am not okay. I know that the majority of these instances happen by well-intentioned people. I understand that most people mean to do good in the world and are not bigots. I have no desire to cancel anyone. What good would that do? Just turn more people against the Autism community. Instead, I wish to educate any and all who are interested in listening to my story. So, I offer you my story and I thank you for listening.
I feel very lucky to be talking to you because you are in a unique situation. You have left school with some beliefs, and you get to choose now, before you enter the real world, if you will carry those with you, or if you will change them. At the end of the day I just ask, when you see someone with any disability, please treat them like you would treat anyone else. Show kindness and compassion to your fellow humans. And please never be afraid to learn. You may say or do the wrong thing but that is okay. You do not have to be perfect. You will not be shut down. We are all trying our best, including me regarding other marginalized groups. As long as we can see the good intention in each other’s hearts, please keep talking and questioning. I would much rather you asked me something offensive than stay silent and never learn. Thank you again for hearing my story. I hope to hear yours too.