When I (or rather, baby autistic me) wrote my TEDx talk I had been diagnosed for two years and only a handful of people knew. This speech was a turning point. I knew that I had less to lose than many other autistics by going public. I had the privilege of feeling secure in my relationships, my work, and my income. I wanted to share my story so I could be another open and optimistic voice in a world full of lies and negativity around autism. I pained over the content of my presentation, I researched and talked to people, I wrote and re-wrote, I edited, I practiced until I could do it without crying. I did my best to get it right.
But I also included content that I now know was not okay. I am sorry that inaccurate and hurtful content exists online because of me. I may know better now, but there are still people every day who are seeing my talk for the first time. So, welcome to older-autistic-me-knowing-better-and-doing-better.
First up, functioning labels. Here’s the video (transcript at the end of this post):
I’m a big-time overthinker, and it would be easy to let the fear of being wrong keep me scared and small. So I’ll keep creating, and when I’m wrong I’ll create that, too. Because what I know for sure is this: we need more voices, more stories, as many autistics, as many points of view as possible. Until there are more autistics sharing our truth, than allistics (non autistics) speaking for us, it matters. And when I get it wrong, I’ll do better. Because I’m on a mission to change the way the world sees autism. And that starts with me.
***Start of Transcript***
There are lots of things about my TEDx Talk that I’m proud of – not throwing up to start with 🙂 But there are also things about my talk that I am sorry for. A few things, but today, I want to focus on this one:
1. Functioning labels. Bottom line: Functioning labels are used to describe how well an autistic can pretend to be neurotypical. It describes your reality, not ours. What you see, not what we experience. We are all autistic, with different skills, strengths, needs, and challenges that depend very much on our environment, and our capacity at that time. Functioning labels are not okay.
I’m sorry. I didn’t know. I didn’t ask, I didn’t even think to ask.
What I know now, is that functioning labels are inaccurate and unhelpful at best, hurtful and offensive at worst. High-functioning is one of the ways people try to divide and define autistics. To determine our value. Eugenics. Which of us are worthy by neurotypical standards. We have different needs, but there are no levels of autism, there is no good autism or bad autism, autistics are all individual, there is not a continuum ‘more autistic’ to ‘less autistic,’ if anything it’s more like a fulcrum: high energy reserves can meet more demands, less energy reserves less demands. But we are all individuals. Our personal energy levels, strengths, supports and priorities plus the current environment and our capacity at that time, determines our ability to function at any time. Autistic + environment = ability to function.
Anyway, now that I understand more, and know better, I find it funny (and not ha-ha) when people call me ‘high functioning,’ because it definitely doesn’t feel like that when I can’t get out of bed, or when I’m freaking out over sensory everything. And boy, I can’t imagine how wild the autistics who are called ‘low functioning’ get, when they are just as capable as other people (and even more so, in many ways). ‘High functioning’ is how you see me, because you only see fully prepared, pulled together, holding it together me. ‘High functioning’ is your experience, not mine.
It’s important to share what you know, we need more autistics, more voices, but it’s also important to keep learning. When you know better you do better (thank you Maya Angelou) and I now speak out against functioning labels.
When I wrote the speech for my talk, I was still discovering my autistic identity, autistic history, autistic culture – I knew enough to know that I wanted to go public as a truthful and positive voice. But I didn’t know everything – I still don’t know everything (when does that kick in? Maybe never!) We’re learning so much about autistics (about the world!) all the time, but what I do know for sure, is that our value is in our existence, that there are layers to this world only revealed to the sensitive, and that in this world, at this time, we need every kind of person, and every kind of brain. The deficit-based system is crushing us. The old binary is rubbish, the binary, of gender, of culture, of brains, of lives? We don’t have to fit into boxes anymore. We are not high functioning and low functioning, we are human. It is my job, your job, our job to decide who we are and how we want the world to be. Because we get to rewrite normal.
***End of Transcript***
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