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How Autistic People Are Showing The Limitations Of Person-First Language

“We recognize that disability and personhood are not mutually exclusive. They are not oxymoronic.”

Posted on July 6, 2021, at 1:58 p.m. ET

A person at a Pride parade holds a sign that reads "My autism is awesome"
Christoph Soeder / Christoph Soeder/picture-alliance/dpa/AP Images

While speaking at an event, autistic advocate Lydia X. Z. Brown referred to themself as “an autistic person” — and someone interrupted to “correct” them: “You mean you’re a person with autism; you need to separate yourself from the condition.”

The interaction was emblematic of how person-first language has been so “indoctrinated” in people, Brown said, and it’s not the best way to describe themself at all.

Person-first language is a mainstay of many newsrooms’ style guides, the result of disability activists who objected to the stereotypical and dehumanizing way people with disabilities were historically written and spoken about. It’s grown to encompass a variety of phrases that place a person above their condition; “a person in jail” is more multidimensional than “an inmate,” and “a person experiencing homelessness” paints a fuller picture than simply “a homeless person,” since it acknowledges that housing insecurity is not a permanent characteristic.

And although copy editors may want to prescribe a one-size-fits-all template to describe someone's condition, the varying feelings among neurodivergent people — which includes those with autism spectrum disorder — complicate this approach.

Many style guides point out that when it comes to autism, the preference among autistic people is for identity-first (“an autistic person”) language over person-first language (like “a person with autism” or “person with autism spectrum disorder”). For this reason, BuzzFeed’s current style is to use the phrasing “autistic person” over “person with autism” unless it appears in a direct quote. We also advise writers to ask someone how they would like to be identified whenever possible and defer to their preference.

The National Center on Disability and Journalism’s guidance is to only bring up someone’s autism when relevant to the story and if they’ve been formally diagnosed, and to ask individuals for their preference between the identity- or person-first descriptors. AP style also recommends asking someone’s preference, but when that’s not possible (or if you’re describing a group of people), the Stylebook defaults to person-first language.

“We recognize that disability and personhood are not mutually exclusive. They are not oxymoronic.”

“Person-first language actually had revolutionary origins. Unfortunately, that has become lost in most modern discourse,” Brown said, “because the people who most loudly advocate for the use of person-first language are not disabled at all.”

It’s often co-opted by nondisabled, nonautistic (aka “allistic”) people, they said. Plus, social workers, teachers, and therapists are instructed in university programs to only use person-first language.

“We’ll often say that if you have to put the word ‘person’ first to remind yourself that we’re people, you really have a problem, not us,” Brown said. “Because if you have to go through linguistic gymnastics to remind yourself that we’re people, you already didn’t believe we were people.”

Both person- and identity-first language are rooted in disability advocacy, a resistance against the historic abuse and subjugation of people with disabilities. Labeled with diagnostic terms like “hysterical,” “idiot,” “moron,” and “imbecile,” these people insisted that they deserved the same respect, dignity, and autonomy as those without disabilities. Brown added that many communities (including autistic, Deaf, and blind people) now generally opt for identity-first language because they “recognize that disability and personhood are not mutually exclusive; they are not oxymoronic.” (Outside of these groups, though, plenty of people with disabilities do prefer person-first language.) When the word “autism” was coined in the early 20th century, it was used to describe a symptom of schizophrenia. Over time, “autistic” became a schoolyard insult, conflating it with someone who’s self-centered, withdrawn, or socially awkward. The community reclaiming the label is a relatively new phenomenon.

“One of the things that’s hard for everybody, including autistic people, is to recognize how recent a lot of these changes are,” said science writer Steve Silberman, author of the book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.

Person-first language can have the unintended implication that autism is an impediment rather than a natural variance in neurology. Many advocates say it’s insulting to frame autism, a fundamental element of who someone is, as a detachable faculty or something to disassociate from. Like almost any other characteristic, it can’t be separated from someone’s identity; you wouldn’t say “the person with gayness” or “the person with Blackness.”

Many people don’t regard their autism as a disability. However, some autistic people continue to identify as disabled to acknowledge that society lacks the accommodations or acceptance that would make their lives easier. For these people, they are disabled by an ableist world rather than by the condition itself. “In the context of a society that’s not built for us, most autistic people are disabled at least to some degree,” one science teacher wrote on Medium. “Even so, for all the barriers autistic people face, disability is not inherent to autism.”

The promotion of person-first language goes against the results of surveys from the Organization for Autism Research and Autistic Not Weird, where autistic respondents overwhelmingly said they prefer identity-first language, whereas those who were nonautistic said they generally opt for person-first. One study from the Association for Child and Adolescent Mental Health claimed that the styling that orients the “person” first is, paradoxically, othering.

Here we get into the limitations of person-first language: Some people prefer to be called “disabled” since it’s simpler than its alternatives and doesn’t connote shame or pity; likewise, some argue that person-first language, by avoiding the word “autistic,” indirectly turns the word into a pejorative when it should be a neutral label.

The one clear takeaway, then, is that autism affects a vast, heterogeneous array of people, not a monolith, which defies any attempts to treat them as a uniform bloc. The CDC’s most recent estimate says 1 in 54 children have ASD, a rate that has only increased over the years.

“You can never say that there is any kind of consensus in the autistic community, because autistic people are more different from each other than neurotypical people are,” Silberman told BuzzFeed News, paraphrasing Jim Sinclair, an autistic activist who cofounded the organization Autism Network International.

Sinclair’s writings, including “Why I Dislike Person-First Language” in 1999, are among the formative essays about identity within the autism rights movement. Sinclair has written about how, semantically, the only time you separate a person from their condition is when you believe it is incompatible with their human side, or the characteristic is a negative one.

“Autism isn't something a person has, or a ‘shell’ that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you'd have left would not be the same person you started with,” they wrote in “Don’t Mourn for Us,” which appeared in the Autism Network International newsletter in 1993. “This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.”

Of course, while many feel strongly in either camp, it’s clear that neither side will ultimately overtake the other; plenty of people use both.

“What becomes so difficult is there’s not necessarily a right answer of person-first versus identity-first. Individuals will feel very strongly one way or another, and I myself use both interchangeably,” said Lauren Appelbaum, vice president of communications at RespectAbility, adding that the divide might also be a generational one; an older person is more likely to use person-first language than a teenager or young adult is.

Several people told BuzzFeed News they simply prefer “autistic.”

“I am an Autistic person,” Emma Brown, cochair of the Neurodivergent Staff Network at the University of Bradford in the UK, told BuzzFeed News in an email. “Autistic is something I am. I have an Autistic brain, and everything I experience I do so through an Autistic (and ADHD) lens. I don’t see it as inherently negative. It is neurology, and nothing to be ashamed of, even if it has made my life more difficult as a result.”

“I describe myself as an autistic person because it shapes the entire way that I view the world,” said Sophia Lyons, a freelance editor and journalist in North Carolina. “All of my interactions through the world are affected by the way I perceive it. So I view it as really important. It makes more sense. It’s more accurate to call me 'an autistic person' than 'a person with autism.'”

“It’s not really something that I want people to really forget about me.”

For Arlo, a 20-year-old autistic person in Michigan, the terminology boils down to their relationship to their identity. “I really felt lost and ostracized from my peers, and then I found out that I’m autistic,” they said. “I got diagnosed as autistic, and I learned that it affects your entire brain. It affects every aspect of your life, pretty much — how I react to it, how I emotionally process something. So it’s not really something that I want people to really forget about me.”

“One of the main arguments for using person-first language is to remember that they’re a person first," they said, "but you shouldn’t need to remember that I’m a person first.”

A BuzzFeed News investigation, in partnership with the International Consortium of Investigative Journalists, based on thousands of documents the government didn't want you to see.

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