I invited a guest blogger to help explain person first vs identity first language when it comes to autism. My guest blogger’s name is Hannah, and she is a young autistic woman. It’s important to me that an autistic individual explain “autistic” vs “person with autism”. For those of us who have been teaching for many years, this terminology is in stark contrast to what we were taught in college. 20 years ago, we would have been scolded for saying “autistic”. This is why I think it is important to have an open conversation about this. Younger educators may not have this background, so “autistic” may feel more natural for them to use. For me, it’s been a learning process. I try to keep my heart and ears open and listen, listen, listen. I appreciate the kindness that Hannah shows when explaining identity first language.
What’s The Difference Between Autism And Autistic?
I am autistic, and I would rather be called an “autistic person” than a “person with autism.” Why? Well, it’s a hot debate in autistic and autistic-adjacent circles. The two are known as “identity first” and “person first” language, and disability advocates have been pushing for person-first language as the preferred option for decades, so confusion is absolutely understandable.
The rationale for person-first (vs identity first) language comes from a long history of disabled people being treated like they are their disability. A person was “retarded” or “crippled,” an “invalid,” or otherwise a victim of something. Even less overtly-offensive terms like “an epileptic” reduce a person to their medical condition, and over time this creates an othering and dehumanizing effect. “Epileptics” become their own category, not part of “us.” “Person” carries all the weight of relationships and history and jobs and hobbies and hopes and dreams and rights. “An epileptic” does not.
Hence, person-first language. People with disabilities want to be called “people with epilepsy,” “people with cerebral palsy,” “people with Down Syndrome,” and so on, or simply “people with disabilities.” Person-first language emphasizes the personhood of the, well, person. This works for people who have contracted diseases, sustained injuries, and so on, and has generally been accepted in the medical community and culture in general. You would always say a person “has cancer,” not call them “cancerous” or a “cancerous person.”
But person-first language doesn’t work with people who are naturally biologically different, especially if they consider themselves part of a community like the Deaf community. “Person with deafness” not only doesn’t make sense, the effect is to minimize or erase the importance of deafness and the Deaf community to that person. Ironically, it can also have a condescending and dehumanizing effect, constantly re-emphasing that abled people have to be reminded that people who can’t hear are still people. (Many disability advocates are now saying the same thing about other person-first language, although it’s still an improvement over archaic and offensive terminology.)
The same thing applies to autistic people and the growing autistic culture. We’ve suffered awful mistreatment in the past, and many of us continue to suffer, because people believe we can be “cured.” Most of us don’t believe that anymore, or that we should be “cured” even if we could, because we don’t believe that things like autism, ADHD, and dyslexia are diseases. Instead, based on a body of research that’s been growing since the late 1990s, we understand these things to be built-in neurological differences that aren’t inherently bad. They come with pros and cons, but many of the cons result from how society treats different or disabled people. For instance, many things that are stereotypically considered “symptoms” of autism are either indistinguishable from trauma responses or are directly caused by those trauma responses. Our lived understanding of our autism often bears no resemblance at all to a list of symptoms, but we’re only recognized as autistic when we’re in distress.
Identity First Language
From this perspective, I am a person, and autistic is the adjective describing a kind of person that I am. I’m not a person with autism, or a person with whiteness or a person with queerness, either. I’m a white queer autistic person. Those are some kinds of person that I am. They’re not diagnoses or problems, they just exist.
Hopefully it’s clear from the above explanation that language is culturally defined, and we get that. “Person with autism” might be no problem under other conditions, and it originated from a well-meaning place. We also understand that medical professionals are taught to use person-first and many people use it because that’s what they’ve been told is most respectful, so don’t feel bad if you’ve been using it without knowing any better or because you have to at your job.
Why Would Person First Language Be a Bad Sign?
But right now, in the autistic community, we generally register someone using person-first language as a bad sign. Many people, though particularly those in the “autism community” rather than the autistic one, insist on using “person with autism” specifically because to them it means “person with a disease.” They want to insist that an autistic person — usually their child — can and should be cured. So, when we see that, it tells us this person may want to hurt us. That they may be willing to put a child through unimaginable “treatments” trying to get the autism out of them. That they don’t value us for who we are. And that’s everything the neurodiversity movement is fighting against.
At best, person-first means someone is trying to engage in autism discourse without listening to what actual autistic people are saying. We want supports, jobs, and competent treatment for the medical problems we might actually be enduring. We want safety from people who are willing to hurt us. We want understanding of how we function and help living our best lives. We don’t want the assumption that we don’t or can’t function, and we don’t want to be treated like how well we function determines our value. We want to be valued as autistic people, because we bring diversity and difference that is intrinsically valuable. We want people to say “autistic person” without acting like being autistic takes away from or is some strange addition to our personhood. We don’t want cures for our personalities.
Autistic Person Vs Person With Autism
When you say “autistic person,” it signals that you’ve listened to us and care about us, and are willing to treat us as fully-formed humans. And that’s why I, an autistic person, would like to be called an autistic person and not a “person with autism.”
I appreciate Hannah’s open and honest, factual descriptions. Not only does she explain person first vs identity first language in an easy to understand way, she also leads with compassion. Thank you so much Hannah!
If you want to learn more directly from an autistic individual, check out the “Ask An Autistic” YouTube channel.
To read more about what autism is, click here. If your autistic child or student is echolalic, check out this blog post for more information.
In addition, a visual schedule can prepare children for what to expect during their day. A visual communication book can help pre-verbal or non-speaking autistic children. It allows them to learn to effectively communicate with others using a visual modality. Both of these are ways of teaching children with autism using best practice strategies.
Be sure to grab the free Visual Supports Starter Set too!
Is it ok to instead not assume what a specific person wants? I get the reasoning behind your preference. So for you, I would honor that and call you an “autistic woman.” But the fact of the matter is, not everyone with autism or other genetic disorders like down syndrome prefer identity first. I follow people on social media and know personally many people who prefer person first. And I know and follow people who prefer person first. I’d rather ask before and not assume what the person prefers, so as to not make them feel uncomfortable.
Oops I accidentally said person first twice in the third last and second last sentences. I mean “And I know and follow people who prefer identity first” for the second last sentence.
wait why did my first comment disappear?