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What’s in a name?
“Being autistic” vs “having autism” and why it even matters to me
You ever get lost in thought, pondering the complexities of language and its intersection with identity while sipping your morning coffee? No? Just me?
Well, pull up a chair—or a bean bag or yoga ball or whatever—and I’ll let you in on my too-deep-before-coffee thoughts on why I prefer to say “I’m autistic” over “I have autism,” and why that matters.
Let’s start with some definitions.
When I say “I’m autistic,” I’m using identity-first language, where being autistic is inseparable from my identity. The vast majority of autistic adults (87%) prefer to use identity-first language.
If I were to describe myself as “a person with autism,” I’d be using what’s called person-first language,which separates the “person” from the “autism.” Only 13% of adults with autism prefer this type of person-first language.
Now, I’m not here to tell you which language is “right” or “wrong” for talking to or about the neurodivergent people in your life. Much like pronouns, this is one of those situations where you should ask, and then subsequently respect, the preference of the person you’re talking about.
But me? I’m autistic.1 And there are a couple of reasons why that’s how I say it.
First, I really do believe that it’s impossible to separate my autistic brain from my “self.” While I may not have been aware of it until recently, my autistic brain influences everything about me, my life, and how I live it.
It impacts what and how I hear, see, smell, feel, notice, and experience. (And what I don’t.)
It impacts what and how I think, remember, contextualize, predict, connect, and understand.
It impacts my understanding of and experience of things like conversation, belonging, humor, vulnerability, intimacy, friendship, reciprocity, trust… the whole nine.
I have absolutely zero doubt that my autistic brain influenced my choice of friends, career, hobbies, interests, style, and everything else that makes me, me.
Everything I do, I do autistically.
Always have. Always will.
So from a pure accuracy standpoint, I feel weird portraying it as separate from me.
But the other reason is a little more semantic.
When we point out someone’s positive attributes, we tend to use adjectives:
Melanie is creative and helpful.
Devon is athletic and friendly.
Rover is playful and obedient.
Even seemingly neutral attributes tend to show up as adjectives: Ann is left-handed and Jay is Italian.
We don’t say “Melanie has creativity” or “Ann has left-handedness.” Why separate the person from a complimentary or neutral observation about them?
But you know what we do say? “I have a headache.” “She has a broken leg.” “Alex has cancer.”
You could argue that it’s not about the attribute being positive or negative. Maybe we only say that we have these things because they’re temporary, while the other attributes—like creative, athletic, playful, left-handed, Italian—are fairly consistent across a person’s lifetime. Maybe we’re just saying “Alex has cancer” in the same way we say “Alex has a girlfriend that nobody wants to invite to game night because she always cheats.” If we’re lucky, both will be out of the picture soon, right?
But it’s worth noting that person-first language is still what’s used in most medical, academic, government, and other official settings, as a matter of policy, despite the identity-first preference of the autistic community itself.
When professionals pathologize like this, talking about “having autism,” it leaves far too many people under the impression that autism is a fleeting thing can be treated like a headache, healed like a broken bone, or put into remission like cancer.
But I can’t take autism off like a backpack when I get home at the end of a long day.
When we talk about being autistic as part of a person—as an intrinsic element of how a person exists in the world, just like being creative or flexible or patient—it stops being something we need to hide, treat, fight, or cure, and becomes something we accept as fact instead.
Words matter. Language shapes not only how society views autistics, but also how we view ourselves.
The word “autistic” means “relating to or affected by autism.”
And that’s exactly what I am.2
Note: I’m not offended if you don’t always use identity-first language for me, unless you’re actively doing it to be a jerk, in which case the language is less of a problem than your general jerkery. Stop that.
You will still me use person-first language sometimes. It’s not a “gotcha.” The magical thing about language is that we adapt it to our needs, like when:
I’m talking about someone who prefers person-first language, and want to respect their choice
I’m quoting someone else’s words, excerpting from a study, or mentioning the formal name of an organization or event that contains person-first language
I’m making a joke that requires noun-ifying autism, like when I say “that was the ‘tism talking”
It’s just grammatically more appropriate for a given situation because language is complicated like that.