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. Without autism, 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 and research worlds, 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” or “my daughter has autism”. I feel that this stems from when an individual is diagnosed and parents get told “your child has autism”. Are any of these labels wrong? The simple answer – no.
The complicated answer is that people like to use labels, whether we do it subconsciously, or are well aware of it. Medicare, Centrelink and the NDIS require the “autism spectrum disorder” label for funding purposes. Research journals too.
I posted on my personal Facebook page that the language argument upsets me. I had a mix of neurotypical (a label used for those who have not been diagnosed with autism or other neurodiverse conditions, like Tourette’s), 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 the advice given to them 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 than identity language to focus on. Like supporting autistic people throughout their lifespan, individually, and as a wider community .
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”.
Joel Wilson is an autistic man, member of Amaze’s communications team and journalism student at Deakin University.
You can find more of Joel’s writing and podcasts at his website: https://iamnotgroot.com.au/