From the outside I look normal. Well, fat and normal. Well, fat and maybe a bit eccentric. I’ve got red lipstick on, my bangs are short and black, and I’m wearing a jumper. But maybe not out of the realm of your average New Yorker. And that, my dear friends, is my downfall.
I tell people who are almost strangers that I have autism. It might seem like quite a big revelation to unload on someone who’s known me for an hour, but as my mother would say, it’s a plan con maña. A plan with an ulterior motive.
I’ve got it down to a science. I’ve got everything down to a science because I am autistic and it is how I live my life. I wait until the person has sufficient evidence upon which to draw to determine that I am normal. So when I lay it on them, they invariably say, “No you’re not.”
Everybody says that. Except sociopaths who try to pretend as though they’ve known everything from the start and nothing you reveal to them is revelatory at all.
So then I say, “No, really, I’m autistic.”
To which they respond one of two things: “You must be high functioning then.” Or, and isn’t this one novel, “Isn’t everybody on the spectrum these days?”
To the latter group, I have one thing to say: fuck you. Much like my ample ass, my autism has been with me since days of old, long before it was popular, and it shall remain with me long after it has faded from the zeitgeist.
But to the second group, I want to tear my hair out. I cannot abide by the term “high functioning.” To the creators of this term, I’m sure it was meant well. It was a way to distinguish between the formerly monikered Aspergergians and the non-verbal, self -abusing autistics who were considered “low functioning.” But even that to me sounds gross.
Another way of looking at it is that the spectrum of function is multi-layered. One might function well in certain facets of life and less well on others. There is nuance to function. There is categorization (oh how autistics live for categorization). There is subtlety. But all of those things are lost on a mainstream society so eager to choke down sound bites on the evening news and then pretend as though they are experts.
I am on a crusade, which I find hilarious as my hair slowly morphs into a Joan of Arc do with every chop of the scissors. I want to rid the world of the term high-functioning. Not because it is offensive, but because it has become co-opted by people, to whom it does not pertain, to mean something completely contorted. It means, “You don’t look autistic.”
The struggle is real, my friends. I went 31 years not knowing why I had so many legitimate struggles that I sounded like I was constantly making excuses and looking for attention. I spent decades silently questioning my sanity because I was just so smart there was no reason why I couldn’t do the basic things that my mouth breathing contemporaries were doing.
And then, when I found my diagnosis, completely by accident after watching, of all things, a Bollywood movie about autism, I had to come to terms with what that meant in a virtual vacuum. Very few people were talking openly about autism in women back in 2011 and what was said was mostly based on comparing and contrasting the “1/4 autistics who were women” to the more societally acceptable “3/4” male autistics. The information disseminated was mostly anecdotal and mostly bullshit.
The only person I had to turn to as a public figure was Temple Grandin. I love her. I applaud her courage. I hold her up as an example of what “living your truth” means. But I am not Temple Grandin. So you’ll forgive me if I don’t act like her in public to prove I am, indeed, autistic.
Now, some nine years later, we have come a long way baby. But with every emerging concept or fluctuating terminology (Aspergers is out, high functioning is in), the truth about us, not the science, not the parents, but us–the actual autistics–gets lost in the may-lay.
High functioning describes how you see me. It does not describe how I interpret myself and the world around me. To call me high functioning without understanding what it means is to dismiss my struggle, to ignore my needs, and, in a subtle way, to invalidate who I am as a person.
There’s something to be learned from other groups’ struggles for identity. The words “bitch” and “cunt” reclaimed by feminists. The word “queer” imbued with pride. If other groups can pick what they want to be called, why not us?
Ostensibly, I want to be called Mrs. Mark Ronson, but perhaps that is not useful in this context. Honestly, I’m at a loss for a label, and words are kinda my jam. But I think there needs to be a campaign from the inside to teach non-autistics who we are instead of letting well-meaning others to do if for us. And if you say that we aren’t able to do so on account of our issues, well, there’s a middle finger of mine that’s just waiting for you to sit and spin on.
My life can be fucking rough. From the outside it looks like I’ve got most things handled. But that is only because my brain is so extraordinary that it has found workarounds for all the things it couldn’t do naturally. I learned empathy. I learned intuition. I learned how to read and write despite having real, actual, serious dyslexia that I didn’t even know I had until I figured it out earlier this year.
That doesn’t make me normal. It doesn’t make life easier. For every two step you do in boots, I’m quick stepping in Alexander McQueen Armadillo heels.
And that is exactly why I tell strangers I have autism. And why I say it again when an issue arises, either it be something super nerdy like naming every movie two actors have been in off the top of my head in a compulsive way or something mundane as a lack of common sense. I do it ad nauseum in the hopes of training everyone’s brain to just say, “Oh yeah, she does that because she’s autistic.”
And then, they will say, “Oh, really, that’s an autistic thing?”
And I will say, “Yes.” And they will have learned something or have had something clarified for them and my particular brand of autism will be elucidated, detailed and drawn in vibrant color instead of reduced to some meaningless term.
And then, hopefully, one day, they will apply it to the next person they meet with autism and so on and so forth. And maybe those people won’t be as verbal as I am, but they will have benefited from the crusade I am privileged enough to embark upon.
My high function, my verbal and written abilities and proclivities, might just one day make a difference. Even if not for people with autism, then for the vast majority of regular functioning humans who never thought about what might be like to have a brain that is wired a little bit differently. I deign to dream of compassion for autistics on a grand scale. It may be that’s not dreaming big enough. Maybe compassion for the person sitting next to you on the subway or the janitor who cleans your office or the wife of the senator who was just caught doing something senators shouldn’t be doing. Maybe that’s the long game.
Just please, don’t let my dreams get in the way of you seeing that I too need help.