Language is a key method of communication, and whether it’s spoken, typed, written down or conveyed by other means, the same message is still getting across. When it comes to disability, and more specifically autism, language gets a bit complicated. There are two main types of language used in relation to autistic people: person-first and identity-first, and not many people are sure which one they should use.
Person-first language is basically putting the person before the other language, and in this case is to say a ‘person-with-autism’. A lot of people believe this is what autistic people prefer, with the theory behind this, even if applied subconsciously, being that the person is ‘more than their autism’. This language is usually applied to be polite, or at least attempt it, because you’re showing that a person is more than the label. However, there are a few reasons why it might not be the best choice.
To begin to explain this, I’m going to use a simple linguistic comparison. When we’re talking about illnesses, we use person- first language. We say ‘a person with a migraine’ or ‘a person who has a migraine’, instead of that person is the migraine, because they’re not. They’re more than the migraine. However, this doesn’t work for autism. As I covered in my last post, it’s a neurological variation not an illness that should be cured. (I am hoping to cover the idea of cure culture in association with autism soon so this is all I’m going to say about this for now).
The second key argument is we, the general population of autistic people, don’t prefer it. It was one of the first things I noticed when becoming part of online autistic communities and quickly agreed with. The use of the opposite of person-first language, which is called identity-first language, seems to be the generally preference of autistic people. I can’t speak on behalf of every other autistic person, which brings us to around 1% of the total population worldwide, so I’m going to turn to a few sources to show this.
There have been two recent surveys run by autistic people that I have taken part in. The first was completed this year in January and was run by Cas, (who can be found here,). This survey had questions on language preference, self identification and diagnosis, among other things, and was answered by around 1000 people. There were two particularly interesting results from this in relation to language preference. The first was about describing in relation to the autistic spectrum
More than one option was allowed here, which is why the figures don’t quite fit for the 1000 people who answered, but you can see that “I’m autistic” features at number one, “I’m on the spectrum” at number two and “I’m Autistic” (as some people prefer to capitalise) at number three. As more than one option was allowed, those who don’t mind capitalising or not capitalising, like myself, probably chose both (and this was confirmed by Cas in the post releasing the survey results). Looking at the exact figures, that around 66.3% who preferred “I’m autistic”, or at least feel comfortable using it and do so regularly.
The second data from this survey, was a question directly link to this post – what language do you prefer? As you can see on the graph below, the top answer was identity-first, with two results before person-first appears. This survey does seem to show a general preference towards identity first language.
One source, however, isn’t enough to get an idea of the general community. Another autistic blogger, Sabrina (who can be found at here), also recently conducted a survey which looked into physical disability, neurodivergence and autism but included a question about language preference. I was one of the around 1000 participants and was interested to see the results, which showed 71% of those who took it preferred identity-first language, 19% had no preference and just 6% preferred person-first language (with the other percentage of those taking the survey, presumable based off of the other questions in the survey, being family members of autistic people etc.)
(I would like to thank both of the above bloggers who both responded to my requests quickly and kindly allowed me to use their surveys and graphs in this post. I have provided links to their blogs, and the exact posts about the surveys, above).
The National Autistic Society also published findings that autistic adults like identity-first language and have since shifted the terms used in their campaigns accordingly. So that’s two surveys run by autistic individuals and one by a major UK autism organisation.
Another thing I would like to cover quickly is language in relation to the current diagnosis. The DSM-V, a common diagnostic criteria (and one that other criteria have been based off of), uses the term ‘Autistic Spectrum Disorder’ or ASD for what would previously have been different ‘types’ of autism (again, something I plan to cover in the future!). What this means for language is that some people, as you can see in the first survey, use the terms “I have ASD” or “I am on the (autistic) spectrum”. I’d personally use the latter, if I were to use this language, because it’s the case of ‘have’ vs ‘am’. I just feel it’s necessary to remember that these are terms that some people use, but they still have ties to identity-first and person-first language.
Obviously some people disagree and prefer ‘with autism’ or ‘has autism’. I’m never going to force my language preferences on them and I respect their views completely. If they were to correct me on language regarding themselves, I would use the terms they prefer when referring to them.
Despite this, I feel it’s best to use the generally preferred term of ‘autistic’, until you get the opportunity to verify it with the autistic person. Trust me when I say this: we – the identity-first language users- will be impressed if you use ‘autistic’ straight away. The simple reason for this is that this preference – which has been proved by autistic individuals and organisations alike – is often ignored within the generally neurotypical community and even groups supposedly there to support autistic people.
I’d like to think I’ve successfully identified that the majority of the autistic community prefer identity-first language, but I think it’s important to look at why identity-first is used by the majority of the autistic community to help understand its use.
It’s really about implication, which to me is highly amusing and ironic as some autistic people, including myself, struggle with understanding implications. In a way it’s linked to the ideas from earlier as to why the general community is against person-first language, but reversed. It comes to the idea that autism is not a disease or illness, one that a person has and can easily go ‘My autism ends here, and I start here’. Back to the migraine analogy, someone can say “My migraine causes pain but it doesn’t influence what my likes and dislikes are”, which is sometime you can’t do with autism.
Chances are you’re part of the 99% of the population that isn’t autistic, that just probability. You’re allistic, meaning non-autistic, or neurotypical (as opposed to neurodivergent, which encompasses autism, along with other things like ADHD, Tourette Syndrome and OCD). And my sister is just like you, so let’s use her as an example here.
If I were to take away her sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.
The ‘detaching’ from autism, for me, seems ridiculous. You can’t detach my neurotypical sister from her neurotypical brain because the fact that she’s neurotypical influences how she experiences the world around her, in the same way that you can’t detach me from my autistic brain.
I do understand that the wide use of person-first language seems to come from a place of kindness and just not realising that there’s a preference to identity-first. I simply feel that understanding that a preference exists, and shifting your language according, is an important step to autism acceptance.