“Wait, so do you have autism?”

A few months back, I was catching up with an old friend who’d seen me post on Instagram about my recent autism diagnosis. While I answered “yes,” as it was technically true, describing myself this way still did not feel completely right to me. I don’t usually say I “have autism,” because that syntax conveys autism as being an illness. Instead, I tend to say, “I’m autistic,” which comes across as a personality trait.

The latter way of describing oneself—“I’m autistic”—uses identity-first language, whereas the former—“I have autism”—uses person-first language. There isn’t consensus about whether person-first or identity-first language is preferable for any given identity—particularly within disabled and neurodiverse communities. For instance, some members of the deaf community prefer to be described as “deaf people” (identity-first language) rather than “people with deafness” (person-first) because they consider deafness part of a culture and a trait to be proud of. Others feel, however, that using person-first language for certain descriptors—e.g. “people with disabilities”—helps to acknowledge someone’s humanity and show that a disability is just one part of them. 

Such discussions about terminology isn’t just the splitting of semantic hairs, though. Language is powerful in its ability to shape how we see one another, and being attentive to the weight of words is a way to show respect for a certain culture or community of people—as well as for individuals themselves. 

In the autism community—which encompasses about one in 45 American adults, as of a 2020 estimate—there has recently been a move among autistic people and their advocates to use identity-first language, as it feels less stigmatizing to many people, says Taylor Day, PhD, a licensed psychologist specializing in autism. “This shift has been largely driven by autistic adults stating their preference. We are seeing more acceptance of differences and people really starting to embrace neurodiversity.” This acceptance has led to more people considering autism a large part of their identity—a part of which they are proud. 

Autism has a long history of being something to cure or eliminate, with autistic people often functioning as objects of mockery and pity. Using language that allows us to embrace our autism can help us move past this history and gain control over how society sees us—and how we see ourselves. 

The case for identity-first language

In the 1980s, the disability community began pushing for person-first language because it was “seen to be less reductive terminology to focus more on the person than the disability,” says Abby Sesterka, a languages teacher at the Flinders University Centre for Innovation in Learning and Teaching in Australia who specializes in neurodiversity. “Language around autism followed suit, though it’s worth noting that autistic advocacy was less prominent at this time.”

While the intention of person-first language was to destigmatize, some believe it actually implies there’s something undesirable about being autistic. Sesterka says that the shift to prefer identity-first language was popularized by autistic activist Jim Sinclair in a 1999 essay. “Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not ‘people with left-handedness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality,’” he wrote at the time. To this day, many autistic people (myself included) see autism similarly: as a positive personality trait. 

“Looking at the English language when describing people, the descriptors we place ahead of the person tend to be more definite, unchanging, or uncontentious,” says Sesterka. “In contrast, we often use a person-first structure to describe more transient things that are likely to change—’that person wearing sunglasses’—or undesirable characteristics, such as illness.” 

Autistic people have long been fighting for autism not to be seen as a medical condition akin to diseases like cancer. For instance, discourse about vaccines causing autism (which has long been disproven) implies that being autistic is an inferior way of being, or a disease that requires treatment. Just this year, a study received media attention for potentially identifying a “drug that cures autism.” But autism doesn’t need to be cured. There is nothing wrong with being autistic; it is simply a way of thinking and being.

That’s why Alyssa Jean Salter, a neurodiversity and disability specialist at Bened Life who is autistic herself, prefers identity-first language. She says it affirms that there is no problem with being autistic; rather, the problem is with how the world sees autism. “It is sometimes offensive to use ‘person with autism’ because it implies an affliction,” she says.

In addition, some autistic people see autism as a large part of who they are. Saying “person with autism” separates the autism from the person, while “autistic” acknowledges how interwoven it is with someone’s identity. “Autism shapes who I am in my daily life,” says Eric Garcia, an autistic journalist and author of We’re Not Broken: Changing the Autism Conversation, who prefers identity-first language. “It shapes how I see the world and do my job. I wouldn’t be who I am without autism.”

Language preferences vary and change with time

Within the autistic community, preferred language varies from person to person. “Some autistic people simply see their autism as a neutral part of their identity, the same way they identify as being a tall person or a brown-eyed person. Some also feel proud of their autism and prefer to identify with it,” says Nicole Arzt, LMFT, a licensed marriage and family therapist who works with autistic people. 

Indeed, this variance of preference includes folks who opt for person-first language. “I see myself as human first and foremost,” says Brian R. King, a coach for neurodiverse people. The phrase “person with autism” makes it easier to “embrace all of me and not just the parts with diagnoses,” he adds. “I find calling myself ‘autistic’ [to be like] saying one part of me matters more than the others. I’m the result of all my parts working together.”

Rose Hughes, an autistic woman who serves as neurodiversity and disability specialist at Bened Life, is okay with both person-first and identity-first language. “I think my go-to is ‘autistic woman,’ but in some contexts, I end up saying ‘with autism,’” she says. Elizabeth Graham, an autistic person who serves on the National Council of Self-Advocates for the disability organization The Arc, feels similarly. “I personally use both interchangeably to describe myself,” she says. 

Still, it appears more common for people to lean toward identity-first terminology. “Previously, we focused on person-first language…and now, we largely focus on identity-first language,” says Dr. Day. Google Trends data—which provides some historical insight on language preferences based on what terms people search for on the internet—shows that uses of the phrase “autistic people” have grown eight-fold in the past two decades. (Uses of “people with autism” have grown as well, likely due to increased awareness, but less so; they have about tripled.) “Most of my clients prefer to identify themselves as autistic, although this isn’t the case for everyone,” agrees Arzt. 

While some autistic people have preferences regarding identity-first and person-first language, these aren’t the only two options. I often use the phrase “on the autism spectrum” because it acknowledges the wide variety of people who qualify as autistic. It’s a way for me to emphasize that even though I may not match everyone’s idea of an autistic person, I am still within that broad spectrum, and I belong in the autistic community.

Many autistic people, however, have mixed feelings about this phrasing, as well. Hughes dislikes “on the autism spectrum” because she’s had people use the concept of a spectrum to invalidate her identity by claiming that we’re all somewhere on the spectrum. And Dr. Day says that some autistic people feel as if “person on the autism spectrum” still separates the autism from the person and their identity.

Other autistic people dislike referring to the “autism spectrum” because it resembles autism’s clinical term, autism spectrum disorder (ASD). The terminology of ASD—particularly the word “disorder”—is debated among autistic people, as it may be taken to mean that something is wrong with being autistic. “Some people who genuinely appreciate their neurodivergence don’t necessarily identify having autism as a disorder,” says Arzt. “They may just simply say they’re autistic, the same way someone might just say they’re American or female.” 

Another term that has fallen out of favor is “high-functioning autistic.” Typically, “high-functioning” has been used to describe people who appear “less” autistic and more neurotypical, which again implies that autism is something that’s negative. Garcia explains that “concepts like high-functioning and low-functioning autism are not accurate descriptions of autism, since they are measured by what neurotypical people see.” Instead of using these terms, Garcia recommends specifying what you mean, e.g. “an autistic person who does not require around-the-clock care” or “a non-speaking autistic person.”

Hughes says she’s also not a fan of calling autistic people “autistics,” as this term has been used in derogatory ways and can feel “demeaning and belittling and ostracizing.”

All of these perspectives are crucial because autistic people have long been defined by others—diagnoses, societal stereotypes, etc.—and rarely have had the opportunity to define ourselves. Self-labeling, therefore, is a meaningful part of taking ownership of one’s identity in a society that still doesn’t understand or fully accept us.

The importance of honoring one’s personal language preferences

The best way for people who are not autistic to show up as allies of autistic people and our sense of identity is to ask how we each like to be addressed. This puts the power over how autistic people are perceived in their own hands. “You will see the community argue about what version is best, but ultimately, it boils down to one thing: preference,” says Salter, who advocates asking each individual what language they prefer. “I cannot judge how others choose to identify because their story and identity is their own.” 

In addition to asking someone what language they’d like you to use, you can observe what words they use to describe themselves, says Tamika Lecheé Morales, outreach representative for ABA Centers of America and president of the Autism Hero Project.

It’s also important to acknowledge that some autistic people have not even had the chance to consider the question of language, Salter adds. They are simply focused on surviving, whether that’s navigating a hostile job market, trying to obtain benefits and services, or enduring discrimination and even violence. 

Ultimately, what’s more important than always getting the language right is embracing autistic people’s individuality and working to improve their lives. “There are challenges over language, colors, symbols, and even whether autism is a superpower or a disability,” says Morales. “But collectively, I believe we all just want systematic changes that provide access and resources for a community that is often left in the shadows and made to feel invisible.” Many autistic people, for example, are fighting for accommodations in schools and the workplace, as well as equal pay. 

Still, “you should always ask how someone wants to be identified for more than just respect but to feel seen,” Morales adds. “Being intentional about our words and actions can have ripple effects.” For me, the act of asking itself also feels like an acknowledgement of my identity, of my agency to say what I am.

Citations

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1. Dietz, Patricia M et al. “National and State Estimates of Adults with Autism Spectrum Disorder.” Journal of autism and developmental disorders vol. 50,12 (2020): 4258-4266. doi:10.1007/s10803-020-04494-4

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