Autism Talk: Coming to Terms
by Gary Evans
August 21, 2012—There’s a heated debate going on in the autism community about something so fundamental that navigating even the simplest conversation has become akin to dancing in a crowded elevator—you’re going to step on some toes no matter how careful and well-meaning you may be. The point of contention is this: when referring to a person on the autism spectrum, should you use person-first language or identity-first language?
Just so we’re clear, the nominees are:
- Person-first: My son is a person with autism—important to note that he is not “suffering from” or “afflicted with” or any other such negative terminology, nor does he “have” autism. He is, first and foremost, a person, but it is important to note he is a person with autism.
- Identity-first: My son is Autistic or an Autistic person. He can also be an Autistic. The underlying point here is that you cannot separate the autism from the person; it is an integral part of who they are.
At first glance, there wouldn’t seem to be all that much of a difference and, hey, couldn’t we just use them interchangeably as circumstance might dictate? However, for advocates and self-advocates, there are emotional issues lurking here that are real and powerful. Discussions on the matter get heated and each side thinks they’ve got it right.
They problem as I see it is that both sides do have it right. The arguments for each are compelling and convincing. We do need to be careful to avoid defining people by their autism and remain aware of the person inside the behaviors. The whole Neurodiversity movement is based on the idea that the autism spectrum isn’t isolated, but, rather, a span or area on the continuum of all human behaviors; as Temple Grandin so eloquently put it, “When does a nerd turn into Asperger’s?” The definition of “person” needs to widen to include people whose behaviors fall outside what is deemed typical and “normal” needs to include the neurological variations that compel those behaviors.
On the other hand, those who prefer identity-first language are quite right in asserting that you cannot rightly separate something so fundamental to a person’s identity and still remain true to the person. We would balk at the idea of referring to someone as a person with Jewishness, or a person with gayness, or a person with Asianess. Why would we talk about “a person with autism”? Autism is not a suit or a shell or something they keep in the closet. It is woven into the fabric of their being. They are Autistic.
And there you have it. Everyone’s right.
So where does that leave those of us who aspire to sensitivity and graciousness in our interactions with people? I’m afraid, at this point, the situation is bleak. No matter which way you go, you’re going to tick someone off. As for me, I’ve resigned myself to that fact and chosen to use the terms interchangeably, as my whim dictates. Therefore, in someone’s eyes, I am destined to be a person with wrongness.
I am an Incorrectic.
August 21, 2012
To read more about the different viewpoints, try this blog post by Lydia Brown, who writes Autistic Hoya, a wonderfully intelligent and often pointed blog. At the end of the article is a list of links to various articles on both sides of the argument.
