The contextual language of autism
I’ve previously written about how my lived experiences have shaped my interest in social-emotional supports for autistic women. Because of this research background, I find myself in conversations with strangers in cafes about the etiology and outcomes of autism. We inevitably talk about the seemingly increasing rates of autism diagnosis (and review correlation vs. causation) or about their neighbor’s quirky child (playfully mocking stereotypes about autistic boys who love trains). At some point in the conversation, I mention my interest in developing useful programming for autistic women and attempt to steer the dialogue away from my background.
In these impromptu autism discussions, I consciously use identity-first language — referring to autistic adults, rather than adults with autism. This is an intentional decision that reflects my identity formation as an autistic woman — a way for me to distance myself from medicalized language of deficits and pathologization of difference. I frame autism as another way of being that is characterized by social, communicative, and behavioral traits. Sometimes I give a brief explanation of the social model of disability.
In my department, I’m expected to use person-first language when discussing disability in an academic setting, including autism. When I talk with our program coordinator, I use person-first language (e.g., young woman diagnosed with autism spectrum disorder – ASD). The identity politics of labels rarely becomes part of such discussions; person-first language is assumed to be the most respectful way to talk about disability issues.
When I began exploring the possibility that I was on the autism spectrum, I reviewed the DSM-IV criteria and realized I met criteria for Asperger syndrome (AS). Since I didn’t have a clinical label, I said I was an Aspergirl, using Rudy Simone’s invented term from her book of the same name. It felt disingenuous to say I was an Aspie or Aspergian since I was only self-identified (or as I prefer, self-recognized) as such. In online settings and among trusted friends, I started referring to myself as an Autistic woman when I studied the DSM-5 criteria for ASD and acknowledged these traits were consistent with my experiences.
I suppose my contextually-based use of identity-first language or person-first language is a form of code-switching. My word choice changes depending on the types of listeners involved. In professional settings, I use person-first language since this practice is embedded in Special Education culture. In personal settings, I use identity-first language because autistic traits deeply influence my experience of the world. I find the language of disability utterly fascinating, especially as I’ve begun researching the social worlds of autistic women like myself.
I remember writing my Twitter bio and wondering if I was allowed to call myself Autistic. Would I be appropriating the experience of people who’d received a clinical label after days of testing and sharing their story with a stranger? Was I expecting other autistic people to judge me as I made sense of my experiences? This summer I wrote a series of poems about exploring autistic identity. These pieces felt like a series of conversations in which I was giving myself permission to call myself Autistic, if those traits resonated with me. I remember reading these lines to the women in my writing circle:
These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.
Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.
I’m still trying to figure out how to be Autistic. I read journal articles about people like me, as I continue my graduate studies. I continue to have conversations about the autistic experience, realizing that my narrative is both shared and my own. Sometimes I feel like I’m pretending, but I’m reminded,
Pretending is something you do when you’re working through what is, imagining what could be. Acting as if — as you become the person you know you are.