If you can write a script, you can write a post

On making a spectacle and mockery of high-support-needs autism for content

Welcome to Fidgets and Fries!

Somewhat free. Mostly not.

If you’d like to honor my writings with a monetary contribution, thank you. If you already have, thank you. Your support allows me to invest in my writing in a way I hadn’t thought possible as well as pay for my son’s communication lessons. And if you are still an unpaid subscriber, thank you. Cause in a world where everyone wants their eyes on their work, you still chose to put your gaze on mine.

This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice, pie, and bad dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.

What will today’s newsletter be? Hmm…

The Video That Sparked This Essay

I honestly thought about letting this one go. I wanted to speak my piece and keep it moving, but something in the way that I gave life to those words that felt stuck on my tongue did something to me. And the responses to those uncaged words did something else.

So, here I am, with an essay on the faint line between representation and performance. Awareness and reenactment.

I don’t know that I wanted to be here, writing this one, but it’s necessary because we live in this age of easily digestible content, this breaking off pieces of our humanity and turning the complexity of the human experience into bite sized chunks for consumption.

And if my small fry self ain’t gonna find someone to speak up about this in the way that I feel more should, then I guess it’s on me to make a little wave.

So, splish splash sploosh, let’s get to it, shall we?

The Video That Sparked My Own

I ain’t really in the business of calling out by name if I don’t have to, and this is one of those instances that I don’t think I have to. For one, this behavior isn’t isolated to this specific creator. Makes no sense to me to lay it all at their feet, no matter how large their audience is. And sometimes, because of who people perceive me to be and what they feel I represent, I have to be discerning with my callouts. I have to move with care, because the ones that will come for me, will not.

I am a Black woman with a platform and a strong voice. I know what comes when people feel threatened by my presence.

It wasn’t advantageous for me to call this person out by name, however, when I shared a reel of what I observed, many people were able to know who it was just based on a description of the video itself and didn’t even need to see it.

I guess they had been bothered by this person’s content for quite some time.

Let me explain what went on in this video without sharing who this person is.

I was scrolling on Instagram the other day and came across a video from a creator I had seen before, and I because I actually liked some of their content before, I decided to watch this reel in full. Given the number of views and likes on it, I would say that it went viral. 199K likes, thousands of comments. Yeah, that’s viral.

This creator is a pretty big deal within the autism community from what I can gather. Big in a way that many know who they are, but not enough that I am incredibly familiar with their work. She’s a therapist, an RBT, works with autistic children, and is autistic herself.

She made this video to “educate” the masses on how connection within individuals with high support needs can look different. And in many ways, I can agree with the topic of discussion, as the parent of a high support needs autistic son who has great difficulty controlling his own body, and whose behaviors can be misinterpreted as all kinds of things he doesn’t actually intend, I can appreciate conversations here.

But she had a whole script laid out. Different scenarios. The assistance of another person (I could assume this is their parent, but I don’t want to go there). She was reenacting a high-support needs autistic’s behaviors. She was flapping and contorting her body and jumping and doing all the things I watch my son do on a daily basis. She wanted people to understand that while a behavior can look a certain way, it could actually mean something else.

I didn’t see something that could definitively lead to understanding. I felt deep, bone-deep discomfort.

This was supposed to be a video that brought forth “awareness.”

I couldn’t see it that way.

I felt shame. Not mine. Theirs.

Cause if you can write a whole script to a video, you can write a post.

You don’t need to contort your body to mimic your someone else’s stim. You don’t need to scream into your mic or flail your arms or reenact the way someone else naturally moves in order to make others see them. If you really wanted awareness, you would have told us the truth. With your words. With your heart. Without turning your clients into a performance.

I watched that video, and I haven’t been able to unsee it.
I saw a person pretending to be someone who isn’t in the position to defend themselves from an inaccurate portrayal (if they see it as such), whose reality was rewritten as content. I saw someone use their client’s most vulnerable and tender moments of what they called “connection” as a tool to manufacture empathy, understanding, education, and awareness.

This is not advocacy.
This is not education.
This is a spectacle.
And when your child needs high support, the cost of that spectacle is steep.

There was no way I could let what I was feeling about this video go even if I felt as though I couldn’t articulate why that was.

Would you call it irony that I wrote a script of what I wanted to say in that video and then tried to remember what I wrote for a video? Maybe? Well, that is what I did, and I am going to provide the text I shared from the reel I posted in response: