Person First Language
Some years back Kathie Snow was instrumental in bringing us into a person first language. It was a way to show respect towards a person with a disability. This continues to be important to many today who want to be known as more than a wheelchair user, the blind gal or the seizure patient. All people like to be on par with the human race – to be counted one of the tribe of homosapiens in our world.
Identity First Language
The way many people with an autism spectrum diagnosis wish to be recognized is with the word autistic. For us, autism is not simply an add on to our personhood, but is in fact, foundational to our identity. Just as we would not refer to an African-American as a person with Blackness, to a person of the Jewish faith as a person with Jewishness or a boy as a person with maleness, many of us do not want to be referred to as a person with autism. For us the neurology of autism is part of our identity in the same way race, religion or gender is part of a person’s identity. Just as we refer to people as Black, Jewish or male many autistics want to be referred to as just that – autistic. It is who we are in this world.
Even so, not ALL people with an autism spectrum diagnosis want to be referred to as autistic. My friend Jacob, for example, explains that autism visits his body in such a way that when people see him coming they SEE the autism. Jacob feels very strongly that when others use person first language they are more likely to see him – Jacob, a fellow human being – rather than the hard of his autism in his body.
I want to respect all my friends and refer to them in the way they wish whether that be autistic or person with autism. This is easy to do when I am one on one with a friend. It is very difficult to do when in a larger group where honoring one means offending another.
The more I thought about this the more I began to see that even though friends may wish to be referred to in different ways this language is not really a dichotomously posed choice where we need to decide which is better and choose accordingly, being ready to defend our choice to whomever asks and especially to those who made the opposite choice.
Rather than seeing the polarized language of person with autism and autistic, I see a unifying construct. I now see that when Kathie Snow invited us to use person first language she was actually inviting us to come into a person first attitude. And it is this person first attitude that unites the word usages of person with autism and autistic. We all want to be included in the human race.
Today when I am do public speaking on autism related topics I on purpose use both person with autism and autistic, honoring all my friends preferred language while realizing that a person first attitude is the important construct. Thus, “I invite you, as the reader, to use whatever language supports you in a person first attitude toward fellow human beings who happen to have an autism spectrum diagnosis.” (Endow, 2013, pg. 14)
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
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Hi Rachel . Are you thinking of @JudyEndow ‘s post Person First Attitude Trumps Language
[…] With regard to my autistic identity, I am a person with a ‘more different than average’ way of thinking, I am a person with autism. It can be both ‘autistic’ and ‘with autism’ without being disrespectful. I love Judy Endows description of this. […]
Thank you for reporting. It makes perfect sense.
Well put, love the way you break it down here and make it very easy to understand why the words matter and why imbedding respect in words is so important.
I would like to know more how person firt works. For example, how do you get a conversation going? email@example.com
As a parent and educator/trainer I often use both myself. Person first primarily but I too sometimes slip and say autistic. My daughter is an 18 year old that I often hear use the term autistic from, when I have had discussions with her about it, she sees it very much as you do, and no big deal. But on the other hand she finds the “r” word highly offensive, even though it seems to be apart of the common core language of teenagers today. So I agree it all about the attitude. But on the safe side I would say if your not a parent or a person with autism, better safe than sorry :)
I prefer to use the term “autistic” but I am often challenged on that by parents. Many parents seem to have the attitude that the word “autistic” is an insult. Yet they refer to themselves as “autism parents” rather than “parents of children with autism.”
I am going to remove my thread below very soon, because people thought that I was saying *Judy* made fun of Autistic people. NO, it was Kathie Snow who did. I apologize MANY TIMES to Judy. So, my comment from my other thread is: NO, I do not mean Judy Endow! I mean Kathie Snow. I once heard her talk about person first language and one of her examples about “inclusion” was that if you had Autistic kids all in a class together (not “included”) they would all learn to imitate each other’s Autistic behaviors. Most of the people laughed. I did not. I raised my hand and said that I learned things from Autistics that I did not learn from other people and that implying that we should be separated because “Autistic behavior” was somehow “bad” was a problem. She said something about how she did not mean it that way. But did not say which way she meant. If she meant that inclusion was a good thing, she need not have singled out Autistics “copying each other” as the reason for inclusion. Sorry Judy! I did NOT mean you! Just now saw this. This talk about person-first language by KATHIE SNOW, Not Judy, was given at a Partners in Policymaking class. In 2009. YES, attitude is MUCH MORE IMPORTANT than word choice. I respect anyone’s choice to call themselves “person with autism” or “has autism.” If that is what that person wants. I once gave a talk to a large group of people had used the word “Autistic” and did not stop to EXPLAIN AD NAUSEAM why I used the word “Autistic” and the only question from the ENTIRE AUDIENCE was why I did not use person-first language. Actually, that has happened to more than one person. I also saw someone else give a talk and the same thing happened.
Kathie Snow does not have a person first attitude at all. She has a Kathie Snow Is Right attitude. I’ve had interactions with her & it was very clear that I was just a PROBLEM because I do not agree with her.
Our society in general tends to minimize everyone’s true personhood–there can even be well intentioned individuals who behave as bullies and violate people’s human rights in soft ways that in reality are not so soft.
I Love you, Judy Endow! I love, Person First Attitude. YES! Isn’t this what we need for all People – of all races, colors, denominations, diagnosis. I’m right there with you about each person can have a choice as to whether they wish to be called ‘autistic’ or someone with autism. But no matter what EVERYONE wishes to be seen and heard for being who they are – a Person First. One of
G-d’s creations – with a right to be heard and seen.
(I write about this in my book, Seven Keys to Unlock Autism….)
Thank you, Judy. As always for being a voice for the voiceless.
Yeah, but when I heard her speak, she made fun of Autistic people, so I am not so sure about that.