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The Identity-first vs. Person-first debate

Photo credit Brett Jordon for Unsplash

Professionals and educators are taught to use person-first language to describe "people with Autism," while Autism self-advocates describe themselves as Autistic. Parents often prefer euphemisms like "special needs" or "on the spectrum." Why is there such intensity around this issue, and what are the right terms to use?

The short answer: you should always use the language that people prefer for themselves. This applies to pronouns, names, and how to refer to the categories and cultures they are a part of. Autistics prefer identity-first language because Autism is not a disease. It's not an accessory. It is imbued in every part of our lives, thoughts, and experiences. Not all Autistics consider themselves to be disabled and parents of Autistic children and children with other disabilities find the term disabled to be stigmatizing and prefer euphemisms that may feel protective of their child.

The long answer:

Identity first: The idea behind identity-first is to combat ableism by embracing disabled people wholly without trying to ignore or sideline a key part of their identity or experience. This is to prevent marginalization and dehumanization. Changes are being made at the organizational levels as well. The Associated Press's Styleguide--the writing rules for most journalists changed in 2021 to encourage reporters to ask subjects if they prefer person-first or identity-first and if their preference is not known to use both alternately. Autistics are not uniform in their use of identity-first. Some use person first and others don't have a preference, but these are decidedly in the minority. Most Autistics prefer identity-first because Autism is a different kind of brain--everything is run through the filter of Autism. The often cited wisdom of person-first for Autistics comes from Autistic attorney Lydia X. Z. Brown's 2011 article "The Significance of Semantics: Person-First Language: Why Language Matters." Brown advocates for identity-first because it's on par with other identities like being Jewish, Chinese, or Lesbian/Gay/Bisexual/Transgender/Queer. They emphasize what is often the unsaid part of the person-first debate--that autism can be separated from the individual.

Person-first: The push for person-first language came before the current identity-first push. started in the 1960s when disability advocates asked to be treated as people first. They hoped that changing the way people talked about disability would change the way they saw people with disabilities too. There were some successes. The creation of the Individuals with Disabilities Education Act (IDEA) in 1973, the string of cases and victories leading to the Americans with Disabilities Act in 1990, and the widespread adoption of person-first language. As you can see, this process took decades.

Prior to person-first language, it was common for people to be called by their conditions such as "diabetic," "schizophrenic," or even the dreaded "r-word."

I would suggest that identifying people by their condition is not the same as identity-first. Identity-first is born of pride whereas condition-first is born of ableism. If this seems hard to nail down, look at the context.

There were few protections from discrimination or even forced hospitalization. Disabled people were seen as a liability and treated accordingly. Person-first came from disabled people and moved into professional and educational settings, journalism, and the mainstream lexicon. It's generally seen as the most respectful by professional organizations.

In training programs for medical and mental health providers, educators, and others working with disabled people, there is a strong push for person-first as a way of reducing stigma and humanizing disabled people. As a mental health professional and first working in state government for the agency responsible for programs for mental health and substance use disorders, using anything but person-first was seen as highly disrespectful of those we served. And for some conditions, it is.

In my doctoral dissertation, I focused on self-care for mothers of disabled children--not only Autistic children. In this case, I decided to use the mixed approach advocated for by the AP and other sources. I also use "Autistic" but alternated between "disabled" and "children with special health care needs" or "children with disabilities."

Many see disabilities as secondary to the individual and not a core part of their identity. Specific disability communities feel differently about this--some preferring person-first and some identity-first. The idea behind person-first is to avoid consciously or unconsciously marginalizing or dehumanizing disabled people. The idea behind Autistic advocacy for identity-first is that we are never separate from our Autism and Autistic isn't a bad word. Even if it has been for some in the past.

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