I is for Identity-first Language

The Letter IThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

I is for Identity-first Language

I know of several groups of people out there who want to be referred to by what’s called person-first language. For example, “people with narcolepsy” is so common that it has a well-known abbreviation: PWN. I have watched discussions in diabetes forums in which people either don’t care what they are called or insist very strongly that they should be called “people with diabetes'”  and never “diabetics.”

People who feel strongly about person-first language tend to explain their stance by saying that they don’t want to be identified with their disease. The disease is difficult and challenging and they don’t feel like it is a part of who they are, but rather a tacked-on difficulty they cope with. It doesn’t describe them, it doesn’t define them, and they would be the same person with or without the condition — it is a surface-level layer that could be peeled away without removing anything significant about the person underneath.

And not only do I respect those groups’ choice of person-first language, but I agree with them. I don’t have narcolepsy but I have another serious sleep-related disability (hypernychthemeral syndrome a.k.a. Non-24) and while it doesn’t bother me at all if someone refers to me as “an N24” rather than “a person with N24” it is not a deep-rooted part of who I am. If a miracle cure could remove my N24, I would be the same person I was before, just with a much healthier sleep pattern. It’s not a part of who I am.

But autism is different. Autism is a pervasive developmental disability — it is pervasive, it pervades every part of my being. Autism is not a layer over top of a non-autistic person. Autism is a word to describe a different type of brain, with different wiring. Autism is a brain that is different in both structure and function. And as an amateur neurobiologist, I believe that my brain is who I am. Someone else might have religious views and say that their soul is who they are, but even they will likely admit that the material vehicle of that soul is seated in the brain. The brain is where thoughts come from. It is where the control panel is for the excretion of the biological chemicals that cause emotions to be experienced. When we see, hear, smell, feel, taste, it is our brain that tells us what we are sensing. Every part of the body comes back to the brain.

So I cannot be separated from my autism. I’ve met people in the diabetes community who hate the phrase “my diabetes” and refuse to use it because they don’t want to claim the disease as theirs but rather view it as an unwanted invader in their body. If I tried to say that about MY autism, I would be calling my own brain a foreign body that I want to eject. That sounds like the basis for a horror movie to me. It is MY brain! It has MY thoughts and MY feelings in it. It is filled with MY memories. I need MY brain. And MY brain is an autistic brain. It is MY autism. Mine.

So to call me a “person with autism” is, at best, disturbing to me. I strive to temper my reaction because I know that people have good intentions. But the good intentions do not make an offensive statement innocuous. It is still offensive to me when people say things like “fight autism” (you want to fight my brain? Why do you hate me?) or call me a “person with autism” (why not call me a “person with a brain”?  To me it is the same thing.)

One of the hallmarks of person-first language, as you may have noticed from the examples I used, is that it is a way to separate a person from something that is considered unworthy, unwanted, ugly, or undesirable. Narcolepsy is a difficult and challenging condition and the only positive I’ve noticed about it is the way it brings people together in a loving community that cares for one another. (I really do love the narcolepsy community! PWN are among my very best friends!) Diabetes is a similar case – there is nothing good about having a malfunctioning pancreas or metabolism and it makes sense to want to use language that separates that dysfunction from one’s core identity.

But autism is not the same. It brings both challenges and rewards. My sensory challenges make the world a very painful place to live in, but they also bring an exquisite sensitivity that causes music to bring me to tears of ecstasy. I process spoken words more slowly than people around me but I process numbers and symbolic logic much more quickly. I have a hard time figuring out what emotions people are speaking with their face, tone of voice, body positioning but I develop strong and deep and loyal bonds to other people. I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.

Note that those are my personal pattern of weaknesses and strengths. Each Autistic person has their own balance sheet of challenges and joys — they don’t all look just like mine. But this is the thing: we each have challenges and strengths. Autism isn’t all negative. It isn’t all challenge. And because autism is about the entire brain and how it is wired (as well as genetic factors and co-morbid conditions that we have a greater chance of manifesting — my sleep disorder being one of those conditions) it is not a thing that can be peeled away from us. If it were possible to re-wire our brains and re-code our genetics, the challenges might be removed but the delights would go along with them. We would lose the disabling parts of autism but we would lose the joy of autism along with them. It’s all tangled together into one big crazy quilt of identity — it is all a significant and rooted part of who we are. Without autism, we would not be who we are.

And this is why so many of us (although not everyone) ask that identity-first language be used to refer to us. That is why you meet so many Autistic adults and teens and children who ask to be called “Autistic,” not “people with autism.” Because it really is a part of our identity, every bit as much as (or more than!) our gender, our nationality, our hair and eye color, our career if we have one, our major at school if we attend. It is as deeply rooted a part of our identity as being a human being. It is simply who we are.

And some of us also choose to capitalize the A in Autistic as a statement of identity as well. Lydia Brown sums it up well when zie says, “I capitalize the word “Autistic” as if it were a proper adjective, for the same reason the Deaf and Blind communities capitalize the respective adjectives “Deaf” and “Blind.” We do it for the same reason Black people often capitalize that word. We capitalize it as a proper adjective or noun to represent our community and our identity.”

Please think about what I have written here the next time you are tempted to say that you love your child but hate autism. Will your child hear the difference? So many of us are hurt by those kinds of statements. Don’t set your child up to hate who she is at her very core. Think about the language you use.

I will leave you with an essay by Jim Sinclair that is currently over 15 years old and is a vital piece of our community’s treasured and living history: Why I Dislike Person-First Language.




7 responses to this post.

  1. This is such a consistently excellent series of posts that I’m upset there’s only 26 letters in the alphabet.

  2. I have read and listened to some remarkable people describe their autism, and they have spoken of it in the same positive/negative balancing manner. But this is the best depiction I’ve come across yet. No wonder the previous commenters have been blown away. I, too, shall be reading more of your blog.

  3. I attended an autism awareness panel today on the college campus where I work. The panel was organized by an autistic student and included his mother, a faculty member, a student with an autistic sibling, a school psychologist and the director of disability services. The first thing that happened after introductions was to set the language. The student said he prefers person-first language. There wasn’t any discussion the perspective you present here. As a parent, I knew it was not my place to argue with someone who is actually autistic about how he feels about the word autistic.Still, I wish I could email this post (and several others that I have read in the past) to every neurotypical student that was in that room today to make sure they know and understand the alternative.

    • Thank you! Rule number one is *always* use the language a person asks to be used for themselves, so in that case, person-first was exactly right. But I, too, do wish there had been more than one perspective there. I try to always remember to say (sometimes I forget) that some of us do prefer person-first and I always wish that they would remember to mention that some of us prefer identity-first.

      When in doubt about what someone prefers and unable to ask, “is on the autism spectrum” is usually safe neutral language.

      • Even though one of the panelist trotted out the “if you’ve met one person with autism” saying, I worry that only one perspective was shared. I didn’t agree with many of the statements the student’s mother was making, but I didn’t feel it was my place to speak up.

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