“Autistic” or “Individual with Autism”?

Kiddo behind a snow-brick wall

When I tell people about my son’s neurological difference, I say he’s “autistic,” not that he “has autism.” I’ve never questioned my choice of language, and until recently I didn’t even realize it was controversial.

It was only when I read the book, Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, Ph.D. last year that I fully realized the implications of both terms. From Dr. Prizant’s “Author’s Note” at the beginning of his book:

I am also aware that others, in particular some adults with autism, prefer the label “autistic,” feeling that autism is indeed a defining characteristic and is essential to their identity and that person-first language implies that autism is inherently bad. (In the same way , you wouldn’t call someone “a person with maleness” but rather “male” or “a male.”) While I fully understand and respect that opinion, I have chosen otherwise for this book.

Until I read that passage, I hadn’t ever put serious thought into the words I used to describe Kiddo’s autism, and at first I wasn’t even consistent about it. I would say he “is autistic,” “has ASD,” “is on the spectrum,” or any number of other terms, but saying he “is autistic” always felt most comfortable to me.

I think there are a couple of reasons for that. One is that my first real introduction into autism — other than Rain Man — was Dr. Temple Grandin, and she describes herself as “autistic.” I love Temple Grandin and her attitude toward autism as being “different, not less.” Saying that kiddo “had autism” made me feel like he was somehow less. And “autism spectrum disorder” felt even worse.

I understand why the terms are controversial, but I say to each his own. I choose to say Kiddo “is autistic.” When he’s old enough to make the decision for himself, I will respect whichever language he prefers, just as I respect others’ right to choose the language with which they frame themselves.

4 thoughts on ““Autistic” or “Individual with Autism”?

  1. I say I am autistic, because autism is one of the core defining traits that makes up me. I feel like autism is at least as important as my gender, maybe more. I don’t ever call myself a ‘person with a female gender’ so why would I call myself a ‘person with autism’?

  2. Thanks for your comment, Ettina. I love hearing your perspective as an autistic person. I’m looking forward to hearing my son’s opinion on this issue someday, too, when he’s old enough to understand it. Until then, I can only express my opinions as a parent of an autistic child.

  3. Leila, Thought you might be interested in these comments and this exchange about my book so you can see how strong some feelings are about the person first issue. Shortly after it was published, my book received a 1 rating, by far the most negative rating I’ve received to date, and the writer never read the book!:

    1.0 out of 5 stars. Don’t bother – the guy won’t even use the terminology preferred by the vast vast bulk of ACTUALLY AUTISTIC people.
    Bykitty_alaskaon September 21, 2015

    I couldn’t get past the person first language in this, which Prizant admitted using despite what he called “the objections of some adults with autism”. Um….try the vast bulk of most autistic people, you disingenuous, erasive, ableist, patronising person lacking autism.

    I was so disturbed by all this that I couldn’t read the thing.

    Big waste of roughly $32 AUD including postage on Amazon, do NOT recommend that other AUTISTIC people throw their money away on this disrespectful s***.

    To which I replied:
    From the author: To set the record straight:
    1) I never referred to the “objections of some adults with autism”. I stated “Some adults prefer the label autistic”. Huge difference. That first quote was invented by Kitty_Alaska apparently as an attempt to substantiate her point.
    2) I respectfully disagree with kitty_alaska about the “vast bulk of most autistic people”. My advanced readers and reviewers included 6 autistic people, including MJC, founder of GRASP (see his comment below) and two members of the leadership of ASAN. These are arguably the most progressive autistic self-advocacy organizations. Not one raised an issue about my use of person-first language in the book.
    3) Of the three people I profiled in my chapter on the “real experts”, one refers to herself as a “person with autism” and the other two have no strong preference. I also have presented for years at ASA, GRASP and other gatherings with dozens of autistic participants with no concerns about my use of person-first language. I also have gotten dozens of overwhelmingly wonderful and encouraging comments about the book from autistic people – again, not a concern expressed. So, I don’t think this issue is of the same level of concern to others on the spectrum as to the commenter who has expressed her concern. Isn’t it most respectful to acknowledge that autistic people may have different points of view and opinions?
    4) Finally, Kitty_Alaska, I especially value feedback from autistic people, but being autistic (or neurotypical) does not give one the license to hurl disrespectful insults based only a disagreement about terminology. Especially so because you never read the book, and therefore have no legitimate right to post a review.

    That said, if it helps readers to see the real message of the book, rather than focusing only on one issue, I will make a concerted effort to use both person-first and identity-first language.

    Comment from Michael John Carley, Founder of GRASP and autistic professional:

    Kitty Alaska Deb,

    With all due respect, the vast population of folks like us kind of decided that the whole person-first thing was a personal choice issue, and not something to divide us (us, meaning people on the spectrum). Fifteen years ago the discussion started to gain in venom, but then the community wisely kind of said, “This is silly. We’ve got bigger things to worry about, like Autism Speaks.” :-). I ran the world’s largest membership org (GRASP) so I feel somewhat confident in saying this. Lastly, Barry’s one of the good guys. Reading his book might change your mind too. – Michael John Carley

  4. Thank you for your thoughtful comment, Barry. I remember running into that review from Kitty_Alaska somewhere else, along with your response to it. I think your response to it is excellent, as is Michael John Carley’s.

    This topic came up in one of the classes for my Behavior Intervention certificate program. In that course, we were encouraged to use person-first language, although it also made us aware of some individuals’ preference for identify-first language. (I didn’t know those terms “person-first” and “identity-first” when I wrote this blog post.) I still use identity-first language when referring to my son’s neurological difference, but otherwise I use person-first language since that seems to be the currently accepted general practice in the service provider community. However, if anybody ever tells me they prefer identity-first, I will absolutely respect that wish.

    I think it’s so important for us to respect individual choices on this subject, rather than imposing divisive rules on others. As for Kitty_Alaska, I think he/she missed out on a great read, and I agree with Michael John Carley that you’re “one of the good guys.”

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