Episode 151: Autistic is a powerful word (solo episode for World Autism Day)

For World Autism Day, I’ve recorded a solo episode where I explain how my thinking has evolved about the word “autistic” – how I was once scared of it, how I overcame my outdated views and biases associated with it, and why now I consider “autistic” to be a powerful word that I’m proud to claim as part of my identity. I share why I prefer identity-first language over person-first language when describing my autistic self, and why we should let individuals choose how they want to describe themselves.

What other topics should I discuss on a solo episode? If you have questions, comments or suggestions, please let me know! Get in touch through my website www.beyond6seconds.net/contact/ or on social media.

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*Disclaimer: The views, guidance, opinions, and thoughts expressed in Beyond 6 Seconds episodes are solely mine and/or those of my guests, and do not necessarily represent those of my employer or other organizations.*

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for joining me for this solo episode of Beyond 6 Seconds.

Today is April 2, which is World Autism Awareness Day – in case you’re wondering why I’m dropping a new episode on a Saturday morning.

This April is also my first Autism Acceptance Month that I’m participating in as someone who knows they’re autistic

It’s hard for me to think back to last April, when I didn’t know I was autistic, and I was just starting to learn about what autism really is, what the autistic experience is really like, and unlearning all of the outdated impressions of autism that I grew up with.

I can tell you, I really didn’t know anything about autism, at all. Honestly it was shocking to me how little I really knew.

And I’ll admit here that around this time last year, I was afraid of the word “autistic”. Yes, I know! To me, it felt scary. It felt negative. It felt like a term to avoid. Growing up in the 1980s-1990s, there weren’t really any positive portrayals of autism that I encountered.

By the way, my next episode coming out on April 4^th really gets into why the social narrative about autism didn’t include many positive things about autism until pretty recently. That episode is with Eric Garcia, who wrote the book “We’re Not Broken: Changing the Autism Conversation.” It’s a fascinating discussion – definitely stay tuned for that episode!

So, where was I? Oh yes, I was scared of the word “autistic.” Interestingly, though, I wasn’t as scared of the word “autism.” So for some reason, saying that someone “has autism” or “is living with autism” or even saying someone is “on the spectrum” just sounded to me to be more polite, more respectful. It took this poorly understood condition and separated it from a person’s identity, from their being. And for a long time, I, along with a lot of people, thought this was good.

Over the past year, though, I’ve been learning a lot about what’s called person first language, and how it compares to what’s called identity first language. I’ve always had this fascination with language, so that’s why I found this particularly interesting. What I was using in those examples earlier is person first language. Put the person before their condition, because they are not defined by their condition! It sounded like the right way to approach it, right?

Well, after listening to a lot of autistic people’s voices and learning about their experiences over the past year, I’ve changed my opinion on this. Most (but not all) autistic people prefer what’s called identity first language – so we refer to ourselves as “autistic people” , not “people with autism.” We say “I’m autistic” instead of “I have autism.”

So you may be wondering, what’s the big deal if I say someone is “autistic” versus someone “has autism”? Well, the thing is, many many autistic people consider autism as a core part of our identity – similar to our gender, our race, sexual orientation, things like that. It’s not something we have – it’s something we are. I’m must more comfortable describing myself as a woman, instead of a person with womanness or femaleness. I was considered a gifted student in school, but I never had the urge to describe myself as “a student with giftedness.” There are even some types of disabilities where we’re comfortable using identity-first language – like blindness for example – someone would likely introduce themselves as a blind person versus a person living with blindness.

What do these things have in common? Well, one thing is that people tend to consider them part of their identities. Changing one of these characteristics would very likely change your sense of self, and who you are.  And that’s the point of identity first language. It recognizes these things as part of our identities. For the most part, autistic people recognize autism as core to our identity. Removing our autism would significantly change who we are. Autistic people who use the word autistic to describe themselves have claimed it as part of their identity.

Another thing – what I think makes person first language seem so polite and respectful on the surface is that it takes something that’s considered negative and distances it away from the person. I’m reminded of the common refrains of “you’re more than your autism” or “ it’s not your whole identity” and things like that. While technically that’s true, it’s also pretty dismissive — it’s not my whole identity, but it is a big part of how I think, how I feel, how I experience and interact with the world. Plus, how often would you say that about other parts of your identity that you consider neutral or positive? Like, you’re more than your giftedness? You’re more than your gender? (The only reason you might say this is if there’s something negative about them.) You might say, you’re more than your job or you’re more than your age (see also: age is just a number) – age and job are neutral concepts, but the context of these statements imply that there’s something negative about them, or they’re creating an obstacle or causing a problem somehow. These statements create distance between these characteristics and the person’s identity.

And that’s the thing –  I don’t feel the need to distance myself from my autism, because being autistic isn’t inherently bad. It’s challenging, for sure, because the world wasn’t built to appreciate and accommodate the ways we experience and interact with it, or because some of us have other medical or other conditions at the same time. But it’s not a tragedy. We’re not broken, we’re not less than, we’re just different. And by using the word autistic, it helps us accept & embrace it as part of our identities.

For me, the word “autistic” is a power word.

I feel powerful naming and claiming something that’s been part of me all my life, that I’m only recently starting to understand and be aware of.

When I started using it to describe myself, I felt proud to be part of such a vibrant community. I felt a kind of power in finally starting to understand who I am, and that I’m not alone. I appreciate the framing that it gives me for my life experiences, including my challenges. I started to accept my autistic traits and have more compassion for myself. I have a long way to go with fully processing and accepting myself – and I may never get to the point where I disclose that I’m autistic in every situation – but that’s ok. It’s validating. It’s significant to me. I’m proud to be autistic.

So my point is, there’s nothing wrong with the word “autistic” – in fact, it can be a pretty awesome and empowering word, as long as it’s not misused as a slur or stereotype. And by the way, I’m not offended or outraged by anyone who’s been using person first language like “person with autism” – last year around this time, before I learned about all this, I was using it too! But I’ve learned that usually, the word autistic is a better descriptor. Of course, people are different, so if you have autistic loved ones in your life, you can always ask them what descriptors they prefer to use for themselves. If they prefer “autistic person” or “person with autism” or even “on the spectrum”, then respect their preference and use that term – ultimately it should be up to the person about how they want to identify. I’ve actually added this question of identity first vs person first language to my interview prep for my episodes with autistic guests!  So if you hear me using person first language, that’s because it’s what my guest prefers. It’s something I’m trying to be more mindful of too.

Speaking of my podcast episodes with autistic guests, I have four new interview episodes coming out each week in April, which feature autistic guests from a variety of different backgrounds, sharing their experiences. If you enjoy these types of stories, be sure to tune into those episodes! Subscribe to this podcast in your favorite podcast app, or find all my latest episodes on my website at beyond6seconds.net. And also, let me know what you thought of this solo episode! If you have questions, comments, or other topics you want me to talk about on another solo episode – I want to hear from you! I’ll put links to my website and social media in the show notes of this episode, so you can let me know.

Autistic used to be a scary word – for me, and for a lot of other people too. But now many autistic people have reclaimed it and embrace it as part of our identities. For me, that in itself is empowering. It’s really important to listen to autistic people, to respect what we have to say about our own experiences, including how we want to define our own personal identities. So, thank you for listening today.

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