Putting Education Reform To The Test

Feedback Loop: Autistic Student, Or Student With Autism?

BLW Photography / Flickr

Our story about Henry Frost’s efforts to enroll in his neighborhood school also sparked a discussion about language.

Dean McIntosh criticized our describing Frost as a “student with autism.”

The debate is over what’s known as “people first” language — that is emphasizing the person over the diagnosis. But McIntosh says you can’t separate autism from the person:

The entire adult autistic community has been saying in one loud voice that “…with autism” is not acceptable. Myself and Lydia Brown are just two examples of autistic adults who write about why. But one of the reasons is that talking about an essential component of a person as if it is a separate thing is not acceptable. You do not say “person with blackness” or “person with Asianness”. Yet it is okay to use such racist or neuro-ist language against the autistic in your eyes. It is not in ours. Please stop.

Lydia Brown wrote about the debate for the Autistic Self Advocacy Network. She prefers identity-first language — calling her blog Autistic Hoya. Brown gathered a host of opinions on the topic.

One common thought we saw was that people-first language makes those using it feel enlightened or better about themselves, and has nothing to do with to whom the language refers.

Lost and Tired blogger Rob Gorski favors using Autistic to describe his three sons. Gorski feels people-first language makes a false implication:

Doesn’t the “child first” language kinda make it seem like their is something wrong with being Autistic? If you focus so much on putting the child before the disorder, when in fact, the disorder is part of who they are. Doesn’t that send the wrong message. Shouldn’t we be embracing our children for who they are (Autism and all) and not try to separate out the parts we are uncomfortable with? Just a thought…..

The Arc of Anchorage sees things differently and offers this advice to reporters:

“People first language” promotes the idea that people who experience disabilities are people first, and their disability, to the extent it is relevant, should come second. For example, a “person who experiences autism” or a “person with autism,” instead of an “autistic.”

Words affect the way people think. They can reinforce outdated stereotypes or encourage respect through accurate, non-judgmental descriptions. As members of the fourth estate, you can make a difference.

Now, don’t get me wrong, I’m all for being politically correct so long as it’s serving a proper purpose. These include proper formalities, curbing racism and so on.

However, for the sake of knit picking your own interpretation of what you think someone else may or may not be inadvertently implying on some other level of perception… is this really what we need to spend our time and energy on?

Again, don’t get me wrong, I am not dismissing the idea of putting the person first, never have, never will.. but only in a very real, active, sense.

We’ve been asking what StateImpact Florida readers think since we published our story Wednesday. Keep sending us your thoughts.

UPDATE — Temple Grandin: “I get concerned when young kids come up to me and all they want to talk about is ‘their autism.’ I would rather talk about their interest in animals, science, or history. They are becoming their label.”

Reader reaction is an important part of building StateImpact Florida’s education coverage. Feedback Loop will be a regular feature highlighting your questions, criticisms and comments.


  • TMKristen

    I prefer “Autistic person.”

  • Alyssa
  • Amy Sequenzia

    I use identity first language because I don’t think being disabled and autistic makes me less worthy. Besides, we want to be respected, no matter how we are referred to. Person first is usually used for things considered undesirable, like “with a disease” . Identity first is also used to praise, like “awesome kid” or “smart person”.
    But I refer to people the way they want to be referred to and I ask people to refer to me as autistic.

  • Shain

    The way I see it, if someone can’t recognize I’m a person while also being Autistic unless they separate the autism out from me in any way they can, then that’s something they should be working on in themselves rather than making it my problem, through language or any other means. Also, these discussions wouldn’t take up so much time that could be spent discussing other issues if those who consider themselves allies would just accept the self-identification of individuals and communities as a matter of courtesy if nothing else and move on rather than insisting that members of the group they’re claiming to support should adopt or at least accept the terminology that the allies themselves like better.

  • I personally prefer to be called an autistic person and find it grating when professionals insist on calling me a person with autism. I see person-first language as implying that I have a disease or something wrong with me. I “have” diabetes. I’m okay with saying that I have diabetes. Diabetes is not my identity. But I “am” autistic. Autism is my identity.

  • Me

    I think by saying “with” x, you make x into something icky. So whenever I feel hateful now I say you are person with x-ness, neurotypicalness, teacherliness, blondeness, curly-hairness, agedness. Really if someone wasn’t going “ew” we wouldn’t care one way or the other whether someone said “with autism” or “autistic.” We never would have even thought about it. Its because some of ya’ll go “ew, you have a disease, go get a treatment” that you then need to say “oh, but you are a person first and I’m so enlightened that I will say it that way” but the reality is that every time you say “with autism” you are really saying “go get fixed.”

  • Wendy

    Wow…you just can’t win. I’m personally annoyed when people say my son is autistic. He is so much more than his diagnosis. However I’m so happy whenever the issues affecting autistic or people with autism is covered that it doesn’t matter how you word it. Just keep covering disability issues.

  • Some awesome viewpoint from this article. I can’t agree more that autism is a part of a person’s individual makeup and does not define who there. Whether it is person-first, or disorder first is frankly, splitting hairs. It really doesn’t matter that much in the self-esteem of an autistic person. Having boys on the spectrum we infuse an incredible amount of self-esteem, and character building language and treatments. What it is called I believe is irrelevant to their personal development!

  • I use different language depending on the audience. I’m autistic when I’m with my immediate family (which includes one “neurotypical” adult and my autistic child). I’m autistic when I talk to others in the autism community- either autistic adults of parents with an autistic child. If they are new to our community, I tread lightly as most people have a period of adjustment where it all feels so raw and new and they are more concerned about the immediate future than the politics of self-identification, especially if they are parenting a very young child. When I am with other people, who are not in the autism community by virtue of their own diagnosis or the diagnostic label applied to their spouse, parent, or child, I use person first language. I understand that “autistic” may seem more appropriate to other autistic adults, and we need to reconfirm our preference and our identity at every interaction, but as I also have type 1 diabetes, and have experienced the dehumanizing comments and treatment from people calling me “a diabetic”. There are too many people who see us as a label and not as individual human beings, and I think that happens far more often outside of the autistic community. Because of my experience as a person with diabetes, where my “personhood” has been discounted, I choose to use person-first language with people who might not have any grasp on what it is to be autistic in this world and they may only have the antiquated concept of “rain man” as their autism “standard”. It’s important to me that they see my child and me as individuals, as human beings, before they can really process what that means to them, to society, and to our families, and how it impacts our lives.

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