“Individuals with autism” – person first vs. identity first language and the worst of both worlds.

“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.

 

Why you need to stop using the puzzle piece to represent autistic people

I hate the puzzle piece. I hate it with every fiber of my being. Therefore, since in a lot of places it’s national autism awareness month, I’m going to write about why you shouldn’t use the puzzle piece.

 

First; a little history on the puzzle piece. It was originally a national autistic society symbol. It’s history is documented here , towards the end of the piece, but the important bits regarding the puzzle piece are quoted lower down here. (trigger warning for ableism on that piece).

That first logo was this.

[Image description] A disembodied weeping head on a puzzle piece.

“’The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover’. It first appeared on our stationary and then on our newsletter in April 1963. Our Society was the first autistic society in the world and our puzzle piece has, as far as I know, been adopted by all the autistic societies which have followed, many of which in their early days turned to us for information and advice.

The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.

If, in the future, we can invest in our Society even more thought, effort and commitment, our puzzle piece will, at least in this country, become no longer just a logo on a letterhead but a symbol of hope for autistic people and their families.”

Let’s take this apart. So, it was adopted because it didn’t look like any other logos, which is fine. But then this apparently tells us something about autism, which is not ok. Now, this piece is from 1997, and the logo was changed in 2002, so this does not likely reflect current views of the national autistic society, although it is still on their site. Apparently we don’t fit in, we suffer (hence the weeping child)because we are autistic, and we are puzzling/ disabled by a puzzling condition. Oh, and it’s supposed to be a symbol of hope. I’ll explain why all these things are bad later in this post, but this is mainly here to show that the puzzle piece never, ever had positive connotations.

It has now of course been co-opted by organisations far worse than the national autistic society ever was, like Autism Speaks, which if nothing else is a good enough reason it give it up on it’s own.

The first problem I have with the puzzle piece is that it’s a very childish symbol. Although many adults do love jigsaws, it is predominantly a child’s activity, and as such has connotations of childhood. This is bad for the autistic community as a whole, as more of us are adults than are children, but people really do forget we exist, and that phrases like “autistic children and their families” excludes a good chunk of the autistic population. We really don’t need more association with childhood. It’s hard to deny that images like this are undeniably childish.

[Image description] Image is of a ribbon with small puzzle pieces in bright, primary colours.

There is then the issue of the implications of using a puzzle piece. It implied that we are something to be solved or fixed, which simply isn’t true. We don’t need to be fixed, or solved  there’s nothing wrong with us, and most attempts to fix us, such as ABA are actively harmful. This implication of the puzzle piece is reflected is autism speaks “until all the pieces fit” rhetoric, and reinforces the idea that we are broken.

[Image description] A puzzle piece ribbon in a box, with text reading “The autism awareness ribbon: The puzzle pattern of this ribbon reflects the mystery and complexity of autism. The different colours and shapes represent the diversity of those living with this disorder. The brightness of the ribbon signals hope- hope through research and increasing awareness in people like you]

Another thing the puzzle piece is supposed to symbolise is the “mystery and complexity of autism”. Autism is no more mysterious or complex than any other neurological disorder really. And it doesn’t exist as a thing separable from autistic people, so they’re really trying to say that we’re mysterious because they don’t understand us. Clue: Just because you don’t understand something doesn’t mean it’s mysterious. The key part in that is you not understanding something, because autistic people tend to understand ourselves pretty well, and allistic less well, but we don’t get to go around calling you “mysterious”, because well, we’d look silly calling something mysterious because we personally couldn’t make sense of it. I don’t go around calling calculus mysterious just because I personally don’t understand it, because I understand that there are people who do.

I’ll touch on the colours issue since most puzzle piece art for “autism awareness” is in this colour scheme of bright red and yellow, light blue and dark blue. So, that’s supposed to represent the “diversity” of autistic people? With a really childish colour scheme? When most us are adults? Yes, we’re all different, that’s true with any group of people. I don’t really get how three colours represents diversity either. Maybe a rainbow would be better like, I don’t know, the neurodiversity symbol?

[Image description] A rainbow hued infinity symbol.

Hope for autistic people. What does that mean? “hope through research and awareness” doesn’t sound very good to me. Research seems like cure, because, well has the understanding of the neurotypical brain really improved neurotypical lives? Are most allistic people somehow better off than they were a hundred years ago because we now know which part of the brain is connected to emotions? Obviously not. People being vaguely aware of autism doesn’t actually help very much either. Acceptance would, but really, the puzzle piece is about fixing us, not helping or accepting  us.

We’re people, not puzzles, we’re whole, there’s nothing wrong with us. There are indeed communication barriers between autistic people and neurotypicals, but they go both ways, we are not the puzzle. You only see pieces missing from a person if you have this preconceived idea of what “person” looks like. If you don’t then you just see a person who’s not like you. This is the idea behind neurodiversity, that we may not be like you, but that this doesn’t mean that there’s something wrong with us.

[Image description]A white woman (aspierhetor) with blonde hair, holding a blue sign that reads: “People not puzzles!” (from aspierhetor)

Now, people do argue that since it’s an established sign for autism (regardless of whether a lot of that was done by autism speaks) people should continue to use it. But is is a harmful one, it doesn’t have any positive meanings and it never really did. It isn’t, therefore, something we should be trying to reclaim as autistic people, as it isn’t really a neutral symbol used against us by organisations like autism speaks, it’s always been a negative symbol.

We have positive symbols, like the National Autistic Society’s new logo

[Image description] A heavily stylised symbol of two figures reaching out to each other, with text reading “The National Autistic Society”

and the neurodiversity symbol

[Image description] A rainbow hued infinity symbol.

so we should use them.

If you can think of any other points do put them in the comments, I’m sure I’ve missed one or two.

 

Links to other people talking about the puzzle piece

http://suburpcomix.wordpress.com/2013/12/15/the-puzzle-piece-symbol-for-autism/

http://unpuzzled.net/2012/04/23/on-puzzles-privilege-and-missing-pronouns-from-journeys-with-autism/

http://diversityrules.typepad.com/my_weblog/2012/04/puzzling-people.html

http://unpuzzled.net/

Introducing me!

Hi, I’m Alex. As you have probably deduced, I’m autistic, I’m called Alex and this is my blog.  I have a lot of thoughts regarding various theories about autistic people, and this is intended to be a space for me to blog about them. I’m also a massive fandom geek, and a psychology student (First year, University of London), so this blog will likely branch off into those topic at times, including more personal stuff.

I was pretty late diagnosed, at 18, as I slipped through the cracks as a child, despite being sent to multiple psychologists.

I believe in identity first language, neurodiversity, and the social model of disability, so I will use “A/autistic person” and “disabled person” as my default for the autistic and disabled communities as a whole, and whatever is the preference of a specific group or person if referring specifically to them. I’m English and London based, but most of my contact with the autistic community has been with the american parts, so I tend to use disablism (the UK standard term for discrimination against disabled people) and ableism (the US standard) interchangeably online.

I aim towards intersectional feminism, and cross-disability rights activism, so do feel free to tell me if I fall short, I won’t take offense and will probably try to change things.

That’s about all I think, so welcome to my blog 🙂