Identity-First Language
Why do I call myself an autistic scholar? Why, for that matter, do I keep using the term in posts – talking about “autistic people,” “autistic children,” or simply “autistics”?
If you’ve heard of identity-first language, you already know what I’m talking about. But there are many well-meaning researchers, professionals, and parents in the autism world who still have never heard of the idea of autistic adults advocating for themselves, let alone heard of autistic adults’ criticisms of person-first language. Thus, I thought I should include a statement here to explain why I have chosen to use identity-first language in this blog.
The idea behind person-first language (e.g., “person with autism”) is that we put the person first, to remind everyone, including the autistic person, that autism is only part of who they are, not the defining part. They are, indeed, a person first. I’m sure advocates of person-first language are motivated by good intentions.
However, one of the best ways of telling whether a particular statement about autistic people is offensive is to take it and apply it to other groups of people. Let’s try that. Should we now start calling calm people “people with calmness,” to remind them that their calmness is only part of who they are, not a defining characteristic? That sounds kind of silly, doesn’t it?
Let’s keep going and try another example. Should we try calling Black Canadians “people with a Canadian nationality and black skin,” to remind them that their nationality and skin colour are only parts of who they are, not defining characteristics? Suddenly, the logic behind person-first language sounds downright offensive.
Let’s try one more case. Should we try calling angry people “people with anger management problems”? Wait – we already do that, don’t we?
Why do we treat these three groups differently? Well, calmness is something we value, but there’s no sense in which calm people form a distinct community, nor in which they’ve been oppressed. Most calm people probably don’t consider their calmness an important part of their identity. However, Black Canadians are a distinct community that has been oppressed, and I’m sure that both Canadian nationality and skin colour are important parts of many Black Canadians’ identities. Finally, anger is something we don’t like very much at all, and many people who have anger management problems probably have an idealized self-image of themselves sans anger management problems.
Autism comes closest to the case of the Black Canadians. Autistic people form a distinct community that has been marginalized and oppressed. Furthermore, for many of us, our autism is part of our identity, and something in which we take pride.
Autism is also a pervasive part of our personalities in a way that something like anger (or calmness, anxiety, etc.) is not. You can take an angry person and subtract their anger, or an anxious person and subtract their anxiety, and you still have someone with fundamentally the same personality. You can’t really do that with autism. Autism is a pervasive part of who we are.
Why, then, do some of us want to treat autistic people like the angry people? What unites these two cases? Well, the answer is simple. Most of us don’t have a positive image of autism, nor do we have a positive image of anger. We judge them negatively. We stigmatize them.
Person-first language is, quite openly, about dissociating the person from their autism. This fundamentally rests upon the assumption that our autism is something we should be ashamed of. It fundamentally rests upon a stigmatizing view of autism.
This is as offensive as it is unhelpful. Autistic people have enormous mental health challenges. Because autism is such a fundamental part of who we are, any view motivated by the idea that autism is a bad thing is effectively telling us that there is something wrong with us. That’s the last thing we need to hear.
I’m proud of my autism, and I know many others are as well. Thus, I’ve chosen to use identity-first language.
I strongly urge typically-developing readers to adopt identity-first language as well. While I respect the opinions and preferences of people on the autism spectrum who disagree with me and choose to use person-first language, the majority of autistic people do agree with me and use identity-first language (Kenny et al., 2016). Like any other community, we have the right to choose our own identity terms, and others have a duty to respect our preferences.
References and Further Reading
Gernsbacher, M. A. (2017). Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry and Allied Disciplines, 58(7), 859–861. https://doi.org/10.1111/jcpp.12706
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462. https://doi.org/10.1177/1362361315588200
Sinclair, J. (2013). Why I dislike “Person First” language. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2), 2–3. Retrieved from http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/OP1
Hello, I just found your website while doing some research on autism. We have a lot in common. We are both grad students with autism. However, I am much much older, and I am just now learning that I might be/probably am autistic. Your article on the topic of Identity-First language is very interesting to me. However I get confused with certain types of terminology and definitions that involve this or that, one or two, true or false. Therefore, I was not able to get a good grasp of which was which when it comes to the definition of Identity-First versus Person-First. And I don’t understand which one is offensive to come people, and which part is offensive. If you would be willing to clarify these points for me, I would really appreciate it! Thank you so much!
Congrats on your new autism identity, then!
Essentially, PFL is language that tries to separate the person & the autism (or other disability), putting the person before the disability label. So “person with autism” would be the classic example. It’s often viewed as offensive because it suggests there is something wrong with being autistic – it’s intentionally trying to avoid saying “autistic person” or “disabled person” because it views this as an explicitly bad thing to be. It’s like if somebody said “we shouldn’t say woman because we don’t want to let somebody’s gender define them; we always should recognize that they are a person with femaleness before their gender.” Sounds very condescending, you know? Jim Sinclair writes eloquently about this: http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/OP1/html_1.
That being said, there are supporters of PFL. A lot of them are bodies of professionals and researchers who really have no business trying to say what the right way of referring to somebody else’s identity is, but there are also self-advocates with intellectual disabilities who vocally support PFL, and it’s none of my business to say how they should refer to their identities, so probably I would say that PFL should be the default for intellectual disabilities, as well as for things that are more transitory and shouldn’t necessarily define somebody’s identity, like mental health conditions. So “person with intellectual disability,” “person with depression,” etc. are probably the right default usages.
IFL is the opposite – allowing oneself to put the identity first, like “an autistic person,” and to take pride in that as a positive aspect of identity, just like one’s gender, race, nationality, etc. There are different ways of doing that (e.g., one could also say “an autistic,” which is technically not exactly the same thing – https://escholarship.org/uc/item/92m9h735) and I’ve argued you can say “autistic person” without it being IFL if one is thinking of the autism as a pathology not an identity (see https://dx.doi.org/10.1097/DBP.0000000000001054), but those are technical nuances.
I will say, though, I think we tend to focus too much on PFL and IFL and that there are other terminology issues, like deficit and pathology language, that are more directly relevant to stigma.
…probably I would say that PFL should be the default for intellectual disabilities, as well as for things that are more transitory and shouldn’t necessarily define somebody’s identity, like mental health conditions.
Personally, I disagree. Currently it is proper to refer to people with intellectual disabilities as such, but those people may in the future come to prefer the term “intellectually disabled people.” Therefore, we should always be paying attention to group preferences and using those for groups rather than setting a static default that is seen as always preferred, such as the term “person with autism.”
Hi Patrick,
I would like to commend you on the stance you have taken in regards to ownership being autistic and referring to yourself as that. To me it shows strength and character of who you are, and the way you approach and treat Autism. I have been around the topic for over 10 years and hearing you and Dr, TC Waisman speak about doing more for those affected, and the community shows that, things are changing, even if it’s taking some time. I trust there will be more action taking place very soon.
Success on your studies, and as you continue to advocate for positive work in communities where Autism is affecting so many lives, and those who are not getting help, for one reason or the other.
Thank you for allowing me to comment on your blog and foundation.
Ricardo
Person-first language has always bothered me. I consume a lot of autism-focused media, and on the show “Atypical” (which I have more than a few problems with to begin with) they make such a point to have everyone AROUND the character with autism use person-first language without really taking into consideration what the autist himself would like to engage in. It also just has an air of “white saviorism,” kind of alleging to respect the person in question while really engaging in the most paternalistic opposite (where we start sounding like the wrong side of the 1988 Gallaudet University controversy).
(PS–I will complete that study! Thanks for the reminder email! 🙃)
Person-first language has always bothered me.
Cool. So you never use it, right?
…have everyone AROUND the character with autism use person-first language…
Jaw drops at the arrant hypocrisy.
This is a great blog and I’d love to reference it in a current post grad assignment. If possible can you let me know what date you wrote it?
Thanks for the kind words, Grace! July 29, 2018.
I also have a more “officially academic” commentary on the topic at https://doi.org/10.1097/dbp.0000000000001054, which was a response to a paper that made some shall we say peculiar methodological choices when trying to look at PFL and IFL, in case that’s useful/relevant
Hello Mr. Dwyer~
I’m the mom of an Autistic student who was just accepted to UC Davis and he/we are trying to connect with the Aggie Neurodiversity Community.
The “contact us” in the community’s webpage does not deem to work so we are reaching out here.
Would you be able to contact us to send us in the right direction?