Excuse you, mind your language

Yes, I’m going to write about identity language, but please hear me out…

As an advocate, one of the most frustrating things I encounter is being corrected on whether I use “autistic person” or “person with autism” or “person with autism spectrum condition”, etc.

I hear it all the time. “You’re wrong for saying autistic. You must use person with autism.” And, “It’s not person with autism. It’s autistic person.

Personally I identify as an autistic person. If I weren’t autistic I would think, behave and act differently. Autism is a part of who I am, and while people still seem to think a person can grow out of autism, I’m never going to. I don’t actively go around saying “Hi, I’m autistic Joel”. But if – whether for university, work, medical, or social reasons I disclose my diagnosis –  I do tend to say “I’m autistic”. This usually results in me having to explain “I have autism”, which I don’t like, but it is what it is.

The medical world and the research world use language like “person with ASD” or “Joel has an autism spectrum condition” (my psych report, for example).

Parents and carers tend to use “person with autism” and “my daughter has autism”. I feel that this stems from when an individual is diagnosed, parents get told “your child has autism”.

Are any of these “wrong”? Simply, no. However the complicated answer is that people like to use labels, whether we do it subconsciously, or are aware of it. Medicare, Centrelink and the NDIS require the “autism spectrum disorder” label for funding purposes. Research journals too.

On my personal Facebook I made a post saying that the language argument upsets me. I had a mix of neurotypical (a label used for people who aren’t autistic), and autistic friends respond.

A lot of disability organisations bang on about the importance of using person-first language, without even acknowledging that some people with disability (particularly those who are deaf, blind, and/or autistic) prefer identity first language”, commented one of my autistic friends.

I just see a person and want to get on with life and engage with them. I shouldn’t have to stop and think before I refer to someone based on their individual characteristics, commented one of my neurotypical friends.

In my work I have to be flexible and use a mix of language depending on the situation. If I’m reviewing a research paper, I need to remember that “person with ASD” or “person with autism” is most likely to be used. If I’m reading a release by the Autistic Self Advocacy Network,  then I know the preferred language is “autistic people”.

I recently reviewed the work the Australian Autism Alliance are doing in the lead up to this year’s Federal Election. I was pleasantly surprised to see that, with eleven different organisations involved, all of whom  use different language, the  Alliance decided to use identity-first language such as “autistic people” – respecting the advice given by autistic people.

To summarise, I’m not going to tell you off for the language you decide to use. And I ask that you please do not tell me that the language I use is wrong, inappropriate, or outdated. Please don’t attack me, as I’m just using the language I feel most comfortable with, while also considering the intended audience.

Also, there’s more important things to focus on than identity language. Like supporting autistic people throughout their lifespan, individually, and together as a community.

hello by Kelbv (CC by 2.0)

I think the most important thing to remember is to ask the autistic individual how they prefer to be referred to.  Most will just say “identify me by my name”.