The contextual language of autism
by Kat
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.
Ask an Aspergirl 
I can understand you very well. As a person with Klinefelter’s syndrome (KS), I stand between the worlds, experiencing quite similar stories like many autists as far as I read from diverse blogs and autobiographies. Specialists tend to address autistic-like traits in KS mainly to the lack of testosterone and therefore weird brain architecture. However, I can’t identify with the majority of KS I met so far as they appear rather neurotypically to me (although allistic would be a better term for it). Keeping in mind that autism is a broad spectrum of phenotypes, I rather would include myself into the mild range of the spectrum but still there, too strong impairments in social communication and interaction but rather on the mild side concerning stereotypic behaviour and routines. However, we tend to categorize people too early. Even those who do not meet all criteria of ASD but quite impairing ones like communication and interaction are worth to get respective support and respectfulness. To my knowledge, support in USA and understanding of autistic-like traits in KS is much better than in Europe. So my self-recognition as autistic just follows the criteria and not the probably different underlying mechanisms compared with “idiopathic autism” since the cause plays a less prominent role in everyday life.
In-between spaces are hard. For autistic-like traits, I suspect that interventions designed for Autistic people would be useful (e.g., executive functioning supports). I’ve noticed that strategies I taught parents of autistic kids and teens to use were also helpful for me. I use lots of visual supports — visual schedules and external reminders.
It’s fascinating to me how the internet has been a sounding board for Autistic adults to get feedback and strategies for managing their lives.
Yes, I think so, too. I’ve already read Rudy Simone’s Asperger’s on the job and I found much more coincidence with my everyday life experience than in official ASD criteria descriptions. So it’s much more the practical advice and strategies to handle it which help me than just to stick to medical terms.
I’ve read Aspergers on the Job. It’s a practical read. Simone also wrote two books on relationship among autistic and allistic people that I liked.
I recently ordered Valerie Gaus’s Living Well on the Spectrum. It looks like a promising book by a psychologist who does CBT with autistic adults who have co-occurring anxiety or depression.
Thanks for the pingback.
I’m diagnosed as Aspergian and I have no problem with self-identified people calling themselves aspie or Aspergian, because Asperger’s is an identity as well as a diagnosis. And I think it would be classist to exclude self-identified people from using these words or from Autistic spaces because not everyone can afford an assessment (and where I live it can be difficult or impossible to get one on the NHS).
Although officially I’m Aspergian, I prefer to call myself Autistic. I wrote a post about this (http://autismthroughcats.wordpress.com/2014/08/03/autistic-as-well-as-aspie/), but the short version is I’m autistic because Asperger’s is a form of autism, and I prefer to be called Autistic because I like writing it with a capital A to emphasise that it’s an identify and community, and because I see Asperger’s as an arbitrary category of autism rather than a distinct neurology.
At the moment I always use identity-first language to refer to Autism, because Autism is a part of me and an identity, not a disease or something I carry around with me. It frustrates me when professionals refuse to use identity-first language despite so many Autistic people expressing a preference for it. I find person-first language very distasteful when it’s used to talk about Autism.
But I think context does matter. I think if I disclosed my disability to an employer I’d say, ‘I have Asperger’s’ because that’s what my paperwork says and because I think I’d get fewer incorrect assumptions and less prejudice. I’d have to use person-fist language for that because the adjectival forms of Asperger’s (eg Aspergian) aren’t recognised outside the Autistic community. So I’d refer to myself with language I don’t like to get something important.
There are definitely pragmatic aspects to the use of identity-first vs. person-first language. When talking with clinicians, I mention to autistic traits that I’ve noticed and discuss my experiences in Autistic spaces. Without a clinical label, I tentatively call myself Autistic: “Text-based,” http://ask-an-aspergirl.tumblr.com/post/93166944675/text-based-on-building-autistic-community.
Being Autistic is a sense-making narrative for me, although perhaps my referral to the autism clinician (on waiting list) will provide further clarity. It’s the most parsimonious explanation I have at this point.
I didn’t have the confidence to self-identify, but after my diagnosis a lot of things about me and my life began to make more sense. I’ve found the first place where I really fit in.
That’s wonderful.
I’m proud of you, sister. 🙂
Reblogged this on Autism Candles.