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“Person with Autism” or “Autistic”?

This is part of an article I found:

Is it Autism or autistic?

In the mid 1980’s, our society began to make a conscience effort to become more politically correct.  From this, the idea of People First Language emerged.  People First Language aims to eliminate generalizations and stereotypes by focusing on the person first and the disability second. -

Children’s Care Blog Talk.

I have had a few people disagree that I should call myself “autistic”. Yes, I am a person first. But my autism doesn’t come second. It prefers to be with me at all times.

Hmm, another way I could put it is that I am a person with asthma. This would be right and if someone said I was an asthmatic, I would be ok with it. But if I suddenly didn’t have asthma anymore, I would still be me (with a little more money that I didn’t spend on asthma medication - and I would be able to SCUBA dive as well with no restrictions). My asthma doesn’t define me, it isn’t part of my personality.

So if a person with asthma, a person with epilepsy, a person with diabetes, etc. were cured of their conditions, they would probably be a lot happier and essentially be the same person with the same personality and the same friends and all that.

If I didn’t have autism anymore….I don’t know who I would be. That is a scary thought, really. I don’t know if I would like the same things, read the same books, even be married to my husband, have the same relationships with my family. What would I be doing without autism? I could be leading a completely different life.

I know some anti-cure views are that we should be proud of who we are, we don’t need a cure, etc. But if I was offered a cure (less sensory issues would be a relief), I would be scared. Because if I took the cure there would be no turning back and who knows how I would turn out on the other end? It is more of a personal issue for me and I believe that it should be for all autistic people - they should decide for themselves rather than tell others what they should do.

If someone calls me a “person with autism”. I am fine with that. But I will call myself “autistic”. I will explain why (if I can) when asked about it.

Autism is with me, it is a part of me, it is me.

Nuisance that it is sometimes.

Filed by renaeden at September 30th, 2008 under Autism and me..., The Asocial Group

Yes, I am a person first. But my autism doesn’t come second. It prefers to be with me at all times.

Great line!!

Comment by abfh — September 30, 2008 @ 6:06 am

I agree with you. I understand that using person-first language may be more politically correct; and I know that some people are offended when I don’t; so for most conditions I will use it. But… with autism… Well, I have autism and I know how much it changes your life. It changes me more than being female, more than being German, more than being a brunette or an engineering major. All those things aren’t person-first; so why should autism be? It seems to me that when you use person-first language, you are trivializing something that can be a very large part of someone’s life. While I understand doing this with physical illnesses and some disabilities that don’t greatly change cognition and one’s experience of the world, I don’t understand it with autism. I’m not called “a person with femaleness”, am I?

Comment by chaoticidealism — September 30, 2008 @ 7:18 am

If I didn’t have autism anymore….I don’t know who I would be.

I know it is a work of fiction, and comes from a very specific point of view, but Elizabeth Moon’s book “The Speed of Dark” addresses that exact concern when the protagonist of the story - an autistic adult in the not too distant future - considers whether or not to be cured of his autism (which, in this future, is curable). I’m not autistic (my son is), so I can’t begin to understand how it will read to someone who is autistic, but it helped me frame and understand the question (and potential answers) just a bit better.

Comment by Brett — September 30, 2008 @ 7:57 am

[...] Per tutti quelli che vorrebbero curare l'autismo: So if a person with asthma, a person with epilepsy, a person with diabetes, etc. were cured of their conditions, they would probably be a lot happier and essentially be the same person with the same personality and the same friends and all that. If I didn’t have autism anymore….I don’t know who I would be. That is a scary thought, really. I don’t know if I would like the same things, read the same books, even be married to my husband, have the same relationships with my family. What would I be doing without autism? I could be leading a completely different life. (da Infinite Diversities) [...]

Pingback by The Rat Race » Infinite Diversities - "Person with Autism" or "Autistic"? — September 30, 2008 @ 9:35 am

“Autism is with me” I like that big time, as the Jedi say, may the autism be with you :)

Well I have said before, after the unfortunate Louis seize, l’autisme c’est moi

Comment by laurentius-rex — September 30, 2008 @ 1:26 pm

Quatorze, pas seize, Larry — zut alors!
Dit numéro quinze: “Après moi, la déluge”.
Alors numéro seize, etait-il le tsunami monarchiste (comme le tsunami autistique d’aujourd’hui)?

===

The overriding prime directive, as far as I’m concerned, when it comes to “autistic person” vs. “person with autism” is: Address each individual who has *stated* a preference the way they have asked to be addressed.

One of the panel organizers at the upcoming Autism National Committee conference has a strong preference for “person with autism”, because his behavioral tics so single him out that he routinely gets treated as a non-person, and he feels that the person-with language creates the necessary counter-emphasis on personhood. I don’t think his reasoning is sound in that regard, myself, but it is not for me to decide based on that opinion of mine that his request to be addressed as a person with autism is invalid and fair game for disrespecting. So I told him that I will always refer to him as a person with autism, even though I use “autistic person” by default in other cases and by overt choice of most of the other folks on the spectrum I know who have stated a preference.

– Phil

Comment by Phil Schwarz — September 30, 2008 @ 9:13 pm

I always thought the person first terminology was an ok idea, but with autism the possessive use of “with” isn’t accurate. It seems to me that the person first phrasing would be ‘person who is autistic’ or, less cumbersomely, ’someone autistic.’ In general, yeah, ask the person. Though, personally, I don’t really care what you call me in that regard.

Comment by Alias Psuedonym — September 30, 2008 @ 9:32 pm

Thank you all for commenting. :) I like the Jedi saying, will remember that.

Brett - I read “The Speed of Dark” a long time ago, when I had just been diagnosed. I think I will read it again, it is a good story.

Comment by renaeden — October 3, 2008 @ 7:24 pm

Thank you for commenting on our blog post. It has been so interesting being able to hear the perspective from someone who has personal experience with autism. At Children’s Care, we often work with children with autism who do not have a voice for themselves and so obviously we are put in a situation to represent them in the best possible way. It is great for us to have the opportunity to hear your thoughts on the issue. I look forward to hearing other individual’s thoughts as well.

Comment by Amber Bruns — October 6, 2008 @ 1:21 pm

Great post Renaeden! I also love that quote that your autism prefers to be with you at all times :)

I often wonder if I would take “the magic pill” if it were offered to me. I really don’t know. There was a time where the answer would have been a fast and definite “Yes!”. Now that I have learned more about what it means to be autistic and that it doesn’t only explain the “bad” things about me, but also the best things about me, I have no idea if I would swallow that pill. In some ways, it would make my life so much easier and even make some of my dreams come true, like being able to interact with people in a “normal” way. On my worst days, I get crazy jealous of non-autistic people and how they can do so many things without thinking. Things that spin my brain into a frenzy and wear me out for the rest of the week. Other times, I am so glad that I am different because even though I don’t think like other people, thinking is one of my favorite things because of the way I see things and learn to understand them. Often, things that are “flat” to other people are rich 3 dimensional pictures and grids to me. Might just be a blade of grass, but I wouldn’t want to see it any other way. On the other hand, if I were still a child and being treated horribly by other children and some adults, I would not have a second thought about taking that pill on the spot. Wouldn’t even need a glass of water.

Comment by Lori — October 11, 2008 @ 3:29 pm

Amber - thank you for your comment, I am glad you read my post.:)

Lori - I have often thought if there was a pill we could take so we could try “Be non-autistic for a day!”, yes I might try that!

Comment by renaeden — October 11, 2008 @ 11:29 pm

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