I wrote yesterday about an evolving fantasy of my ideal introduction to autism and what that might look like. Later I was asked privately about ‘person first’ language. An example of ‘person first’ language is: “My child has autism” or “She is a person with autism” as opposed to: “My daughter is Autistic.” This topic comes up repeatedly so I thought I’d tackle it with a post of its own. The current language used to describe autism and Autistic people, starting with the insistence among many parents, educational institutions and the medical establishment to use person-first language (read Jim Sinclair’s Why I Dislike ‘Person First’ Language), is all about deficits, comparing Autistic neurology (inferior) to non Autistic neurology (superior) which is self-serving, biased and continues to further the general public’s misperceptions about autism and Autistic people.
Shame based language, the things we say because we don’t know better, because we’ve heard or been told it’s how, whatever the topic is, should be spoken of, is still shame based language. For a long time I didn’t understand why person-first language was objectionable. It seemed “respectful” to speak of the person first before adding their neurology. Except that autism brings with it discrimination, prejudice, misunderstanding, assumptions about intelligence or a lack of, and so suddenly all those people who are being so careful to describe this person, whose neurology is “Autistic”, are actually implying that they think autism is something to be avoided, it’s something we pity, it’s something we’d like to be sure the person knows, we “understand” and are being careful to give them “respect” except we are doing exactly the opposite. When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race.
I will always respect anyone’s personal preference, but in general, I will continue to use “Autistic” because I am not ashamed of my daughter’s neurology and I refuse to convey that underlying message of ‘less than’ inherent in ‘person first’ language.
Autistic perspective on ‘person first’ language:
ASAN – Identity First Language
Shaping Clay – Person-First Language Doesn’t Put People First, It Makes Them Invisibly
Autistic Hoya – A Second Argument Against Person-First Language
Radical Neurodivergence Speaking: I don’t have autism. I am autistic.
Amy Sequenzia – I am Autistic
Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us. If you haven’t, do. In the Loud Hands: Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword. By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because.. well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist? Here’s the “link” (again) to buy it. Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!
I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand. There is not a single essay that has not been streaked with neon green highlighter. The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.) It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.
Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover. Jim wrote, “The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.” “… you’ll find a world you could never have imagined.” This has been my experience, exactly. I think I’ve even said something close to this before. I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about. So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!
One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair. Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real. To me, autism is like those images, beyond anything I could have imagined.
Images taken from Hubble Space Craft