Over the years, the language people have used to talk about disability has changed – a lot. There have been many changes and ongoing discussions about these changes. However, if you talk to those of us in the neurodivergent community, it’ll become increasingly clear, that until fairly recently, our voices around these changes haven’t been heard by many professionals or researchers.
Making the right choices with your language is incredibly important – you can be the person that empowers and supports the autistic people around you, and help broaden and improve attitudes of the wider community, just through the language you use (Monk, Whitehouse, and Waddington, 2022).
So, let’s talk about terminology, and why it’s so important to get it right.
Autism? Autism Spectrum? Person With Autism? Autistic? Condition? Disorder? Aspergers’ Syndrome?
There are so many different terms used by different people for autism, but is there a right choice?
Identity first language
Generally, each person you speak to will have a preference, and the best way to make sure that you are not using terms that might upset them is to ask them. A simple question and discussion about an individual’s preferences is the quickest, easiest way to make sure you get your terminology right.
Research from the University of Birmingham, that was published in 2022, showed a clear preference towards identity first language, rather than person first language. “Terms such as “Autistic person”, “Is autistic”, “Neurological/Brain Difference”, “Differences”, “Challenges”, “Difficulties”, “Neurotypical people”, and “Neurotypicals” were among those most favoured by the survey group” (Keating, et al., 2022).
Research from the United States and Australia also confirms a clear community preference for identity first language. There are of course individuals who prefer other language options, and those choices should also be respected.
Identity first language rather than person first language might be a big change for some people to get their head around. This is a big topic and an ongoing debate in the whole disability community, not just the autistic community.
'A person with autism'
For a long time, there was a push from professionals and researchers towards person first language, “a person with autism” for example, as an attempt to move away from pathologising individuals and to avoid people being defined by their disability. They are a person first, and their disability is only part of their identity, it isn’t their whole identity. Person-first language has been the most common and widely used terminology for years, and when reading anything about disabled people, it is what you are most likely to see.
With that said, for a lot of the neurodivergent community, their preference is identity first language, in this case “autistic person”.
“Person-First Language is about putting as much distance as possible between the person and “the autism.” It is the opposite of acceptance” (Sequenzia, 2016).
Identity first language is important to start to de-stigmatise a lot of diagnosis. Generally in the English language, adjectives are used before the noun they are describing rather than after. We typically don’t say a “a person who is smart” because it doesn’t feel right grammatically, we say “a smart person”. If you heard the former in conversation, it would feel strange, you would notice it automatically.
The change to person first language might have had unintended consequences. “By drawing attention to a disability through unconventional language, stigma may be perpetuated rather than mitigated” (Taboas, Doepke and Zimmerman, 2022). Moving back to identity first language helps others around us start to recognise that our neurodiversity cannot be separated from us and is inherently not something to be ashamed of.
Personally, my neurodivergence isn’t just one part of my identity, it makes me who I am. I cannot be separated from it; I don’t carry it around with me in a bag and decide when it’s there and when it’s not. It is always there; it has always been there, and it always will be. It doesn’t need fixing, it doesn’t need changing, it’s just me. When you use identity first language to talk to me and about me, it shows me that you recognise there is nothing wrong with me just because I experience the world differently than you do.
I am not the only neurodivergent adult in the world, and while my preference is for identity first language like most of our community, there are plenty of other people who prefer person first language, and that’s okay too.
If you don’t know the preference of the person and don’t have a chance to ask them, go with the majority opinion of the community, because that’s a safe bet. If you do have a chance to ask, ask and use that. And if you’re referring to a group of people who have different preferences, use the language of the majority of the group. (Brown in Callahan, 2018).
An accessible summary of terminology from the University of Birmingham’s research team can be found here (Keating, et al., 2022).: https://issuu.com/u21autismresearchnetwork/docs/how_to_talk_about_autism
Table 1 of this paper has some useful strategies for replacing terminology from “potentially offensive terms to autistic-preferred terminology” (Monk, Whitehouse, and Waddington, 2022): https://www.sciencedirect.com/science/article/pii/S0166223622001667
Callahan, M. (2018). Unpacking the debate over person-first vs. identity-first language in the autism community. [online] news.northeastern.edu. Available at: https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/.
Keating, C.T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H. and Sowden, S. (2022). Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation. Autism Research, [online] 16(2). Available at: https://onlinelibrary.wiley.com/doi/10.1002/aur.2864 [Accessed 20 Mar. 2023].
Lynch, C.L. (2019). Person-First Language: What It Is, and When Not To Use It. [online] NeuroClastic. Available at: https://neuroclastic.com/person-first/ [Accessed 21 Mar. 2023].
Monk, R., Whitehouse, A.J.O. and Waddington, H. (2022). The use of language in autism research. Trends in Neurosciences, [online] 45(11). Available at: https://www.sciencedirect.com/science/article/pii/S0166223622001667 [Accessed 20 Mar. 2023].
Sequenzia, A. (2016). The Gymnastics of Person First Language • Ollibean. [online] Ollibean. Available at: https://ollibean.com/the-gymnastics-of-person-first-language/ [Accessed 21 Mar. 2023].
Taboas, A., Doepke, K. and Zimmerman, C. (2022). Short report: Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, [online] 27(2), p.136236132211308. Available at: https://journals.sagepub.com/doi/10.1177/13623613221130845 [Accessed 23 Mar. 2023].