One of the best ways to show someone respect is to validate who they are. Often, we can do this with language, like when we ask (and then use) someone’s preferred gender pronouns or their preferred identity- or person-first language when describing their disability. For example, if an autistic person prefers “autistic person,” but you instead insist on calling them a “person with autism,” that can be disrespectful and invalidating.
A discussion around identity-first versus person-first language comes up often in the autism community. And while everyone may have a different opinion — and has a right to choose how they prefer to identify — many people in the autistic community prefer identity-first language. Often, this comes down to understanding that autism isn’t a “condition” to “cure,” but one of many diverse ways humans show up in the world. Autism is a type of neurodiversity, a concept that celebrates all of the normal and natural neurological variations that exist within the human genome.
It is important — whether you’re neurotypical or not — to respect people’s language preferences. To understand identity-first language better, we spoke to The Mighty’s autism community and autistic artist Margaux Wosk, an active member of the #ActuallyAutistic community on social media, about their personal experiences with language. Wosk uses identity-first language when describing themselves.
What is Identity-First Language?
When we use the term “identity-first” language, we are talking about people who view their diagnosis not as something they want to distance themselves from but as an important aspect of who they are — much like how you can’t change your ethnicity or eye color. You don’t typically say “people who are Brazilian” when talking about folks from Brazil, instead, you’d say “Brazilian people.”
This works similarly in relation to autism. People who prefer identity-first language will say they are autistic rather than a person with autism. It’s a reclaiming of what it means to be neurodiverse, shedding negative stereotypes about autism.
“By putting autism secondary to you, you are saying it is a detachable part of yourself and that it’s basically an ‘extra piece,'” Wosk said. “For me, being an autistic person encompasses all that I am. Autism is not an accessory. It is my neurotype. It is why I am the way I am.”
Autism is not a disease. So for a lot of people on the spectrum, using identity-first language helps break down stigma and moves away from the harmful idea autism should be “cured.”
I’m autistic. My autism changes how I see and interact with the world and it’s very integral to who I am. I’m quirky and serious just as much as I am autistic. I see it as more of a descriptor rather than a disorder. I have cancer, but I am autistic. — Ryan Reyes, member of The Mighty’s autism community
What is Person-First Language?
On the other hand, person-first language separates the person from their disability or condition. Most often, person-first language is preferred by people who live with chronic illness or mental illness to indicate they’re not defined by their condition. It might be less stigmatizing, for example, to say “person with bipolar disorder” versus “bipolar person.” In the case of autism, those who prefer person-first language will refer to themselves as a person with autism rather than an autistic person.
Many autistic adults, however, feel using person-first language implies there is something “inherently bad” about autism and that it can or should be separated from the person. The language matters, as Lydia Brown, a disability justice advocate and law scholar, explained in an Autistic Self Advocacy Network (ASAN) blog post:
When people say ‘person with autism,’ it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of [their] skin.
Why Autistic People Prefer Identity-First Language
For many autistic people, autism is an inherent part of their identity. It’s nothing to be ashamed of or try to hide or mask. Identity-first language helps break down that stigma as well as foster acceptance and neurodiversity.
I am an autistic person. I would not say “I have autism”; that makes it seem as if it is something separate from me, like developing cancer or something else that has been thrust upon me without my consent. — Minamii, a member of The Mighty’s autism community
Brown explained why in the case of autism, and many other diagnoses, disabilities and identities, identity-first language is critical:
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as ‘a person with autism,’ or ‘an individual with ASD’ demeans who I am because it denies who I am. … We are accepting that the individual is different from non-Autistic people — and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.
What to Do If You Don’t Know How Someone Identifies
You may be wondering, especially since everybody has a different preference, what is the correct way to refer to someone on the autism spectrum? The short answer is that there is no one correct way. It is all dependent upon the individual’s preference. When someone tells you the language they prefer, then that is the correct language to use. This is called using person-centered language.
Person-centered language involves bringing the person you are talking about or describing into the loop and letting them tell you who they are. Identity is incredibly important to most people — it’s how we help shape the world around us. Having others affirm and validate our identity is equally important. By doing so, we recognize a person’s worth and value.
I don’t prefer either [autistic or person with autism] for myself or for my children and spouse. Neurodivergent or Aspies is how we identify in our home. I prefer either one of these and have since my first time telling someone that our daughter and I are on the spectrum. The response from the person was that neither one of us looked Autistic to them. We noticed when we were advocating for ourselves or our girls. When we say Neurodivergent or Aspies we receive curiosity, confusion, and even further engagement into what either word means. Instead of the infuriating response that we don’t look Autistic. — Tasha Rinnus, a member of The Mighty’s autism community
One thing you should never do is correct someone on how they identify. This is something that has happened to Wosk many times.
“[Being corrected has] happened to me a lot. I get things like, ‘You’re not an autistic artist, sweetie! You’re just an artist,’ or things like, ‘You are more than your diagnosis!'” Wosk said. “It gets to the point where people are telling me that those words are compliments. I don’t ever see it as flattering.”
It’s something that’s common on social media sites but can happen in face-to-face conversations as well. It happens even within the autism community. Being told how to identify can diminish a person’s lived experience and is super exhausting, invaliding and often stems from negative or ableist attitudes about autism.
“They must think there’s something wrong with being Autistic and that they still believe there are negative connotations attached,” Wosk said. “I hope to help break down the stigma.”
How to Ask People How They Identify
It can feel weird to ask someone how they identify but it’s better to ask than to guess or assume. A perfect example of this is asking about gender pronouns. Unless someone has a pin identifying their preferred pronouns, it’s always best practice to ask their pronouns to avoid misgendering and invalidating someone. The same principle applies to describing folks on the autism spectrum.
While, as Brown explained, people who use either identity-first or person-first language want to place value on the person, using identity-first language validates autism as a neurodiverse identity for many autistic adults. If you’re really not sure or can’t ask someone what their language preference is — or you’re talking about the community in general — using “on the autism spectrum” is more neutral than guessing one way or the other.
If you are neurotypical, use the language the person you’re speaking with wants you to use — and ask if you’re not sure. If you’re neurodiverse, you should also use the language the person you’re speaking with wants you to use to identify them, even if it’s different from how you identify yourself.
“Some of us can feel quite defeated by the fact that there are people who believe they can tone police us or decide how we choose to identify, which is classic ableism,” Wosk said. “I do not allow this. I tell [the person] right back that they are not allowed to decide how I choose to identify.”
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For more on identity-first language, check out these other Mighty articles: