The Word I Choose

How I chose the autism terminology that I prefer for myself and my family

Black notecard and hearts pegged to a rope

Autistic is the word that I choose to describe myself and my kids. It’s also the word preferred by many people in the autism community, so therefore it’s the word I choose to use throughout my website.

I love words.

I think about them all day long and can’t stop myself from reading every single one that comes into my field of vision. I manipulate them, bend them, roll them around in my mind like a piece of candy. They are my playthings. They matter to me. Some of them trigger vivid explosions of imagery, and when that competes with the way the word is being used it almost hurts. The words become separated from their meaning because I can’t stop focusing on those images.

So when it comes to talking about autism I use the words that make sense, for me.

Person-first language – ‘person with autism’ – doesn’t sit right with me because ‘with’ means accompanied by or having… and I don’t hang around with, possess or own a thing called autism.

Having is a discrete situation – you either do or you don’t. And if autism is a spectrum, then there’s no defined point at which you either do or do not ‘have’ it. You can have an ASD diagnosis, that’s a tangible thing. But if you can’t tell me which part of me is autism and which part isn’t, then it simply can’t be something discrete enough for me to ‘have’.

Autism is not a side dish. It can’t be separated from me, and I don’t need to be separated from it. It’s not disrespectful to me to be identified as autistic, and doing so isn’t focusing on a diagnosis. In fact the word autistic isn’t attached to a diagnosis.

As an adjective, autistic is simply a word that describes a way of thinking about, perceiving and responding to the world around us.

Adjectives are, by nature, spectrum words. Fat, tall, fast, bumpy – there are no defined points for these words, their meaning is unique to the thing they are describing. People can be different heights and still be called tall. Your dog is cuddly in a different way than mine, even though we use the same word to describe it. Adjectives embrace individuality, and I like that about the word autistic.

‘Autism’ on the other hand is a word which is defined by a set of behaviours, that in total describe no single person. By attaching the word to someone you are associating them with an entire spectrum, to all of those behaviours, and removing their individuality in the process.

So to me, ‘autistic’ describes and ‘autism’ defines.

As far as person-first language goes… if the order of the words is what someone needs to show that they see me as a complete person, then that makes me sad. And changing the order of the words isn’t going to make me feel any better. Want to put the person first? Then forget the order of the words, it’s the context in which you use them that matters.

If you introduce someone and say “This is Phil, he has autism” then that’s never putting him as a person first no matter which syntax you use, because in that context the autism isn’t relevant. If you’re talking to the school about how best to support your child’s needs, then the autism is the most relevant part of them at that point so it doesn’t matter which way you say it, you’re still putting them as a person first.

I also don’t use ‘person with an autism spectrum disorder’ because I don’t like to put the focus on the diagnostic label. It’s a name created by the APA and they don’t get to define who me or my kids are. It also excludes all those autistic people who may be undiagnosed. Do people suddenly become autistic only when they get a formal diagnosis? Why should the APA have a monopoly on defining autism? Also, see person-first stuff above.

Bottom line

Autistic is the word that I choose to use because it’s the one that sits best with my experience, and the one that I’m sharing with my kids.

I don’t use this word casually. I use it exclusively and with purpose, because I chose this word. I thought about it, I read what others had to say, and I decided. It’s how I identify myself and for this reason, like many in the autistic community, I intentionally don’t use person first language when talking about autism.

I know that some people alternate between using both autistic and person-first language to avoid offending anyone who feels strongly either way. I made a decision to use autistic and I would hope my reasons for doing so aren’t offensive to anyone. If I’m talking directly to or about someone who has a preference that I’m aware of, then of course I will use their chosen word to describe themselves.

Last updated 24 Aug, 2017 by Bec Oakley

Additional resources

If you want to understand more about the use of identity-first language, here are some smart people having that discussion:

Jean Winegardner

Lydia Brown

Jim Sinclair

Julia Bascom

Bec Oakley is an autistic writer and proud parent, with an intense passion for 80s text adventures, Twizzlers and making the world a better place for autistic people and their families.