Let’s get this straight?

“Individuals with ASD/autism” is a phrase that I started paying attention to recently, and it’s frustratingly common in autism research. It’s superficially similar to person first language (eg. person with ASD), but without the point and benefit of person first language: affirming our personhood with language. There’s also the identity first variant “autistic individuals”, which I’ve been seeing more of recently.

I personally think that “autistic person” (identity first language) and “person with autism” both talk about how we’re people, and that’s what’s needed. I also think that a lot of the fuss over person first/identity first is a useless distraction, people should use whatever makes sense in a sentence, and not argue that autism needs to be held at arm’s length from the person. So, the “you can’t define yourself by your diagnosis” and “we need to remember that they’re people, so person first” needs to go, but honestly sometimes “with autism” is easier in a sentence, especially if you’re comparing us to non-autistic people. They’re both fine, just don’t be too insistent on person first when it doesn’t make sense, and don’t tell other people how they should identify. And don’t think of autism as a thing that’s separate from a person like a luggage or an illness, because that’s not accurate.

Having said that, I do actually have a problem with the “individuals with ASD” phrasing. It misses the point of person first, which is making people say that we’re people. Identity first language also makes people say that we’re people. Autistic people, Deaf people, Disabled people are all phrases which say that we’re people. It’s the separation that the self-advocates and autistic rights activists tend to hate, without the emphasis on personhood that the autism parents tend to want.

Individuals isn’t a term exclusively used for people. It’s a word that can be used when you’re talking about animals. You can talk about an individual mouse. Each mouse is an individual. You can talk about say “individuals with SHANK3” and that could apply to a mouse or a human. Saying “individuals with ASD” doesn’t affirm our status as humans, as people in the same way that “people with autism” does.

I think it’s also more prevalent as a way to refer to people with permanent conditions like intellectual disability or autism than people with things like depression. Obviously it’s pretty widely used for lots of conditions though, so I’m not sure about the stats on that. Google scholar search results for people vs. individuals are 3,000,000 vs 3,010,000 for depression and 623,000 vs 762,000 for autism though, which seems to support my intuitions about this. Google scholar results are not the best way to do this though. There’s a good analysis I saw recently where someone wrote an algorithm to go through and check whether person first language was used consistently (for both disabled and non-disabled groups), and something like that is probably what you’d need to get a clear answer on this.

I think the one request from both sides of the person first/identity first debate is to use language which affirms the humanity of autistic people. And that’s a pretty furious debate. Why, if that’s the case, and one of the few things that much of the community agrees on, are researchers ignoring it?

Individuals does sound a bit more formal than people, but many articles do use the word people, so it seems ok by academic writing standards. All the cases where “individual” is used would seem to fit “person” equally well. Of course, if you’re talking about people participating in a study, “participants with ASD” or “autistic participants” may be the most accurate phrasing.

Anyway, this seems like a place where academia has kind of missed the mark on language, and I really can’t figure out why it is. I can’t see any good reason not to affirm the status of autistic people as people in academic writing, especially when it’s such an issue for us. I might have missed something though, so if you can think of an actual reason to use this kind of language then please tell me. If it’s a thing of trying to sound more formal or more intelligent, then please don’t do that at the cost of dehumanisation, however minor.

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Categories: Autism research, Autistic rights | Permalink.

3 THOUGHTS ON ““INDIVIDUALS WITH AUTISM” – PERSON FIRST VS. IDENTITY FIRST LANGUAGE AND THE WORST OF BOTH WORLDS.”

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Actually Autistic Blogs List

November 15, 2017 at 2:01 am
Alex, your blog is currently included on our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description.

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Judy (An Autism Observer)
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Actually Autistic Blogs List

November 17, 2017 at 10:16 pm
If you want to customize your blog’s description, please click here. Thanks.
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Eve Hinson | BadassActivist

November 17, 2017 at 1:21 am
Reblogged this on American Badass Activists.
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