Tuesday, August 17, 2010

'Autistic' or 'Person With Autism'?

Jean Winegardner

When I write my column Autism Unexpected for Washington Times Communities, I use the words "person with autism" and "autistic person" pretty interchangeably. Every once in a while, I get a comment telling me I should use "person first" language, meaning I shouldn't use the word "autistic" to describe a person.

Because I've heard this criticism more than once, I feel it necessary to tell you that I not only use the word "autistic" intentionally, but thoughtfully and with purpose.

The theory behind person-first language ("person with autism") is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my Twitter followers which they preferred, and the majority, mostly parents of children with autism, reported that they prefer the person-first terminology.

Person-first language is an easy philosophy to accept. It makes complete sense, and I find it to be a perfectly reasonable way of thought. However, I tend not to prefer it. The reasons for rejecting person-first are more complicated, but, I believe, equally valid.

I use the adjective "autistic" for several reasons. I have taken my cues from many autistic adults who self-identify as autistic. For these individuals, autism is simply a part of them that cannot be separated from who they are. Autism is, in a way, a description of how their brains work, not something that has been added to their being. Without autism, they would not be the same person; therefore it is not something they have, but rather something they are.

Autistic adult and autism activist Jim Sinclair wrote a very clear, articulate essay about why he dislikes person-first language. This essay lays out why he identifies as an autistic person, and his reasons are very similar to mine.

I use "autistic" because I don't see autism as an affliction but rather as a character or physical trait (such as blond, nice, intelligent or short) or as a major life characteristic (such as religion or race). Often, person-first language refers to a disease: "living with cancer," "a person with lupus," or "has AIDS." I think this type of language, while not necessarily wrong, doesn't work with autism in that it tends to pathologize the condition, which I do not see as a disease but rather a way of being.

My entire goal with my son is to raise him as a proud autistic person. He is what he is, and that is wonderful. I want to teach him that his autism is a part of him that gives him the gift of being able to think differently. It also gives him challenges, and he needs to learn how to compensate for those shortcomings. But, I don't want him to think he has this extra thing that makes him less.

I do understand many people don't care to hear their children referred to as autistic. I respect that. When referring to other people's children -- or other adults for whom I don't know their preference -- I almost always use the phrase "person with autism." For my own son, or when referring to people in a group, as I've mentioned, I use them interchangeably. Once my son is old enough to have a preference, I will follow his lead and refer to him as he sees fit.

I personally subscribe to a live-and-let-live philosophy. While my beliefs lie with "autistic," I tend to use whichever phrasing works better in my sentence. I also see many people feel passionately about person-first terminology. I would like to let these people know that, when I use the term "autistic," I am not doing so with derision, nor am I making a comment on you, your child or the people you know with autism.

I have a tremendous amount of respect for people with autism and their caregivers, and, no matter what terminology I use, that will never change.


This essay originally appeared in Washington Times Communities' Autism Unexpected.