For years, the autism community has grappled with a linguistic controversy: Is it better to describe someone as “autistic” or as a “person with autism”?
The use of “autistic” is identity-first language, focusing on disability as identity, while “person with autism” is person-first language, focusing on the person irrespective of disability.
To understand the terminology, it’s useful to trace the evolution of this language usage in the disability space.
The pivotal disability rights movement of the 1960s and ’70s was led by people with disabilities who banded together to lobby for their rights. A big focus of the movement was inclusion, architectural accommodations, and deinstitutionalization.
Disability was traditionally seen as the sole identity of a person, so it was necessary for the movement to separate the disability from the person (“people with disabilities”) to create dignity and worth for personhood. There was a living, breathing, thinking person sitting in the wheelchair instead of a “disabled” or “crippled” entity.
Identity-first phrasing was seen as negative, so person-first language became the language of choice and was used in many disability laws, including the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and the United Nations Convention on Rights of Persons with Disabilities. In fact, the Rehabilitation Act of 1973 mandated the removal of discriminatory language like the word “imbecile” (used in the 1927 Buck v. Bell ruling) from federal laws and policies related to individuals with disabilities.
Autism advocacy groups also adopted person-first language to give dignity to personhood. However, as the next activist generation of autistic children grew up, they took the lead from the deaf and blind communities, which frequently use identity-first language because they see their disability as part of their identity. (Other groups like “individuals with intellectual disabilities” largely prefer to keep person-first-language).
Which leads us to the controversy of today, with many younger autistic people offended with person-first-language, even as some some parent groups, as well as service-provider organizations, are equally offended by identity-first language.
So is identity-first language or person-first language better usage for autism?
Perhaps the autism community could consider what the wheelchair-user community is doing: A growing number are embracing both identity-first language and person-first language. They are reclaiming, rebranding and de-stigmatizing identity-first phrases.
Consider the word “cripple.” Disability-activists like Leroy F. Moore Jr. and Keith Jones cofounded Krip-Hop Nation, which unites hip-hop and disabled musicians. Andrew Pulrang, Gregg Beratan, and Alice Wong coined #CripTheVote prior to the 2016 elections. Crip-Camp, with its depiction of the early disability rights movement, received an Oscar nomination. “Disabled” and “Crip” are now regarded by many as the mind-body experience and on par with the person-first language “person with disability.” These are powerful examples of how different perspectives can unite to create a stronger, more inclusive community.
The autism community can learn from these examples and embrace both identity-first language and person-first language. It is not an either-or — we can accept both identity and personhood.
But it’s important to look at the intent and context behind usage. Identity-first language can be negative if it’s not accompanied by empathy or respect. The bigger picture is not the language usage but the action that follows.
What is being done to help the autistic community on the ground? Is everyone getting access to spaces, funding, services, and opportunities, or are some being gate-keeped?
If not, all this talk about identity-first language or person-first language is just a pedantic exercise and a distraction.
Hari Srinivasan is a PhD student in neuroscience and a fellow at the Frist Center for Autism and Innovation at Vanderbilt University. He was a 2022 Paul and Daisy Soros fellow.