I have had person first language drilled into my head since Evie started Early Intervention at the age of 6 months or so. For those of you that don’t know, person first language means that you would say, “Evie has autism” and not, “Evie is Autistic.” The thought is that you need to separate the Autism from the person.
I didn’t even realize there was a debate about it within the Autism community. And honestly, I would cringe when I read or heard someone refer to a person as Autistic because I have been so heavily indoctrinated. But I’m learning.
You wouldn’t say that a person who has cancer is cancer. So you shouldn’t say a person who has Autism is Autistic.
But, Autism is not a disease. And there is a lot of fear mongering involved in linguistically comparing it to a disease–something to be diminished, cured, reduced, fixed. There is also, not so subtle, shaming in telling someone that Autism doesn’t–shouldn’t define him/her as a person. That the Autistic person should separate from the very nature of his/her being.
Who is deciding that Autistic people can not identify as Autistic? Many Autistic adults vehemently insist on being referred to as Autistic. The Author of Yes, That Too has devoted several blog posts to her insistence on being called Autistic. I don’t suggest referring to her as a person with Autism after she has asked to be referred to as Autistic as she is a force to be reckoned with. She writes thoughtfully and intelligently on a wide variety of topics, has a bachelor’s degree in math and is working on a master’s in math. And oh yeah, still working on her bachelor’s in Chinese. And Engineering. Yet some would have the gall to say she is not what? Smart enough…capable enough to identify herself as an Autistic person???
I say I am happy. I say I am human. I say that I am female. These are all words that I use to identify myself as a person and to identify with other people. None of these words singularly define me. Would you ask me to say that I am “a person with femaleness“? Nobody criticizes the use of these words because these words have positive associations associations in our culture.
Autism does not have positive associations with the population at large. When I was questioning the use of a social therapy that I was not familiar with at our IEP meeting last week, I was told that it was used to work on “the deficits of Autism.”
We look at Autistic people as people with deficits. That is truly offensive language and discriminatory thinking. As long as we think of Autistic people as deficient or lacking in…humanity, we make it painstaking for an Autistic person to identify with and embrace a large part of his/her nature. Stripping Evie of her ability to proudly identify as Autistic would be akin to stripping me of my ability to identify as a woman.
Does being female conjure up images of deficiencies as a person?
The only difficulties that I have as a woman are the ones that our society has dumped on me. And I say the same is true of Evie as an Autistic person.
Evie is in no way shape or form deficient. If you think that the facts that she does not have speech or make eye contact often mean she is deficient as a human, then YOU are deficient in acceptance, tolerance, and humanity.
I’ve mentioned that before Evie was born, Autism was pretty much my worst fear for her. I was taught to fear it in everything I read about this terrible affliction, this Autism, that snatches our kids away and silences them at an alarming and ever increasing rate.
Autism has not snatched my Evie. It has given me my Evie. The Evie that I love the heck out of every single ding dong day is wholly and fully and completely and lovably Autistic. Always Autistic in every single thing that she does as I am always female. And I have never wished any part of who she is away. And she is Autistic. Did I mention that Evie is Autistic?
You can’t take Evie’s Autism away with your language. And I am as thankful for that as I am outraged that any person would, knowingly, use language to shame, oppress, dismiss and marginalize Evie and her Autistic people.
***Editing to add that while I don’t want to use language in a way that I believe separates Evie from Autism…especially in a way that has a shaming effect, I respect every person’s right to choose how he/she self-identifies. I should have made this more clear in my original post***
love explosions 
Wow, beautiful! Thank you. I wish I had something more eloquent to say, but you just said it all, so just thank you!
Thank you, Sparrow 🙂
This is an amazing post. I love your point of view. I’m in an Intro to Exceptionalities class in school, do you mind if I share this with them?
Thanks Jen…you can share and that is very flattering but there are other essays that say it far better than I did. Sparrow just shared this with me on my facebook page: http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
Also, the link in my post goes to several excellent posts about this very topic which are also from an Autistic person and should, thus, carry more weight for that reason alone. 🙂
I would love to have a list of great blogs, thanks for the offer.
I can’t speak for any of the other people who have written about it, but mine are all also fair game, and the policies on Autistic Hoya suggest that hers are fine to use too.
(I’m Yes, That Too.)
Thanks! I’m working to become a special ed teacher, and I don’t want to turn the lovely children ‘normal’. Normal does not exsist! The more personal experience I read about the better educator I can become, and I’m assuming it will also help the other people in the class.
Jen, honestly, you should really check out some of these amazing blogs. I bet you could do a really amazing term paper utilizing a lot of the information you find. It would also be really good for you to arm yourself with some information from the experiences of these remarkable people so that you can push, push, push back when you are taking your courses. You’re my friend and I want you to read my blog, but even more, I want you to read these other blogs–especially if you’re going into special ed. as you have a fabulous opportunity to do some really good things in that role. If you want I can email you a list of some really incredible ones–including yesthattoo.blogspot.com which I linked to. 🙂
I loved this so hard!
Thank you, ox
Thank you Hannah 🙂
This is wonderful. I recently had a conversation in which I tried to explain exactly what you’re saying here and it didn’t so so well. I too am undeniably Autistic all day every day and I don’t get why someone would be bothered by me saying so. Especially not when I expressed it in the context of being quite comfortable with my “label”. Next time I’ll just link to this beautifully written explanation.
Thank you. But I can see that you have a beautiful way of explaining things from reading your blog. You’re blog is also very informative and has a been a great learning tool for me over the past couple of weeks.
I (the writer of Tiny Grace Notes and any articles by Elizabeth J. Grace) am also Autistic and also a Mama to my sons instead of a person with motherhood… my favorite part was where you don’t suggest gainsaying Alyssa as she is a force to be reckoned with. She is! Beth Ryan I want you to meet us all IRL because then you will see the happy flapping of kinetic applause… but with bigger hands than you must so often see it happening in your life now 🙂
I love your blog, Ibby. And I happen to think you’re a pretty awesome Autistic Mama with personhood…I mean person 😉 I hope that I will have the honor of meeting you all one day. And after reading her blog, I also hope that Alyssa never gets mad at me 😉
im autustic i dont get what the big deal is if i choise to say i am that or have autism .im sick of other deciding what we should be called .typplical people dont go through this .im sure this crap is comming from the super high funtinging aspgers group /self dx people .it takren me along time to be ok with who i am you can say whatever u want .but dont tell me what word i should use to tell someone what i have or who i am
Hi Stefanie,
Thank you for your thoughts. We all have the right to identify in any way that we choose…maybe I didn’t make that clear in my post. I will edit it. I believe that language is powerful and the way we use language can play a big role in how we see things.