When I was 15, I sat down with my mother and told her that I was a lesbian. For the next couple of years my sexuality was referred to with a look, a nod, a hand gesture or, if she had to, a whispered “you know.” We’ve come a long way but it took a long time.
When I was 23, I sat down with my mother and told her that I was autistic. She was loving and supportive but, like a lot of people, she didn’t know much about autism. Also like a lot of people, she had a negative connotation and mentioned that she wouldn’t be telling anyone. She says the word autism to me now but she hesitates each time, like she’s wondering if she should really be saying it aloud.
The Sapir-Whorf hypothesis states that language determines or greatly influences thought. Linguistic relativity is debated but in this instance, at least, I think it’s relevant. What does it do to a person when who they are inherently is stuttered over or not said at all?
Very few people in my life say autistic. There’s my wife, my autistic friends…end of list. My neurotypical friends don’t say it, don’t refer to it, probably don’t think about it. My in-laws are open, accepting and accommodating and even they avoid the word autism when we talk about it. I feel its absence each and every time—a black hole that threatens to suck in my self-confidence and identity.
I’m as open about autism as I’ve always been about queerness. And as with my sexuality, I only ever keep it a secret when I worry about my safety—emotionally, professionally or physically. So, a lot of people know I’m autistic: my professors, classmates, coworkers, friends, family, acquaintances. And no one says autism or autistic or disabled. Why? Why don’t they say it? “You won’t catch it if you say it,” the words I repeated so often as a teenager to my mother, pop up each time it’s ghosted over.
Is it a reflection of their thoughts—that autism is a taboo subject, something that we dare not speak its name? Is it because they disagree with the cavalier way I discuss my disability, almost like it’s a normal part of life? Is it a worry that they don’t know the terminology well enough to not offend me? Do they think it’s too serious to discuss with levity? Whatever it is, it’s determining or strongly influencing my thoughts.
Sometimes I catch myself thinking that maybe it’s too personal and I should keep it to myself. Sometimes I hesitate talking about being autistic, even to people I’m close to, because it makes me feel self-conscious. I should not feel like I can’t talk about my disability just because other people are afraid to.
Autism is a big part of who I am. Sometimes I want to talk about a new special interest and how happy it makes me or I want to laugh at how terrible I am at picking out furniture because I have bad depth perception. Sometimes I need to talk about how drained I feel because I had a meltdown recently. I can talk about these things without naming autism but that erases a larger picture of who I am. By continuing to dance around it, I’m afraid I’ll continue to internalize a wrongness connected to my identity and I refuse. I fought those feelings when I came out 13 years ago and I’ll fight them now, too.
We can talk about autism. We can say autistic. It’s not taboo, it’s an everyday part of my life. It’s not too serious or sad or tragic. You won’t offend me if your heart is in the right place. After all, I still love and talk to my mom every day and she used to wave her hand back and forth to mean gay. So, you know, there’s hope for everyone. ♥