Wednesday, 22 June 2011

On Language

The public perception of autism has been transformed in the last decade or so. Even four years ago, when Euan was diagnosed, it received far less attention in the media than it does now. Representations of autism then were often restricted to Rain Man and a few exceptional individuals of the kind who used to be labelled ‘autistic savants’, such as the artist Stephen Wiltshire. Much as I admire Stephen and his work (see above), focusing on his talents doesn’t advance the cause of autistic people a great deal, because becoming a world-famous artist is only ever going to be an option for a very small number.

Lately there has been a wider focus in the media on the nature of the condition and the kind of help that autistic people need to cope in everyday life. Autism is a much more talked-about condition than it used to be, and in essence this has to be welcomed. Things have come a long way even since two years ago, when the Daily Mail published an appalling column by Carol Sarler in which she intimated that parents would be better off if they were able to abort autistic children. I’ll declare an interest here: as a freelance journalist, I work two days a week on the news website of Scottish Television. STV isn’t outstandingly good or bad in its coverage of autism, and in the media industry as a whole I genuinely feel the climate is improving.

Yet misperceptions endure, most noticeably in the language used to describe autism. It doesn’t help that this is often the subject of some debate within the ranks. For instance, the National Autistic Society advises journalists to say “a person with autism” rather than “an autistic person”. This reflects the trend for “people first” language in discussing disabilities, which is a noble sentiment, but in the context of autism I feel it is rooted in flawed logic. The phrase “autistic person” reflects a number of things, among them the quirk of English grammar that insists that adjectives precede nouns regardless of which word is deemed more significant. If you translate it into French, une personne autiste, the “people first” problem solves itself, and yet there’s no evidence that the French attitude to autism is more enlightened than ours as a consequence.

More seriously, I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity. It’s partly the reason why this blog is titled ‘Autistic Dad’. (As a working journalist, though, I recognise the need for consistent and agreed terminology, and will use it even if I privately disagree with it.)

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

And then there’s the question of whether to say “autism spectrum disorder” at all, since the word disorder is considered by some to be too negative. Here I’d come down decisively on one side of the fence. Autism might be an elusive term that covers a wide range of conditions, but “autism spectrum disorder” is a medical diagnosis. It’s not just about letting people make sense of themselves: it’s there to identify those who need therapy and intervention. Since the autism spectrum covers a wide range of both abilities and disabilities, the word disorder is essential to distinguish those children and adults who need medical assistance from those who have strong autistic traits but can cope unassisted. The urge to couch things in positive language is understandable, but we should be wary of the bleaching effect it can have on the more awkward and difficult aspects of autism.

These are not just technical points: language matters. It shapes perceptions and has a bearing on how the wider world interacts with the autistic community. In the case of autism, which can be hard to define and has been so entwined in myths and misunderstandings, it’s important to have an ongoing debate about language that reflects the changing perception of the condition. There are often good arguments on both sides and I’d welcome anyone who wants to put the opposing point of view.


Catherine Edmunds said...

Couldn't agree more. Saying an autistic person is a 'person with autism' is like saying I'm a person with an allergy to strawberries. I can avoid strawberries. My autistic daughter can't do anything to avoid being autistic. There is no correlation at all. A

Luna said...

I'm going to respectfully disagree with you on the use of "autistic". Mostly, because I think to some extent we can separate the autism from the person. For example, on gfcf diet, my daughter's symptoms decrease. She is able to be herself without the autism getting in the way as much.

It is a disorder. Or possibly a disease (one theory is that it's auto-immune, affecting the brain). We don't usually refer to people with the adjectives describing their disorders. There are exceptions (she's bulimic vs she has bulimia) But we don't call someone with OCD 'obsessive compulsive', someone with Tourette's, I dunno, Tourettic? We don't call lsomeone with cancer being called cancerous, or someone with CF cystic fibrotic.

Just seems to me that 'autistic' takes away from the humanity of the person. But I understand that everyone doesn't feel that way, and I try not to be offended, because I realize no offense is generally intended. :)

Astrid said...

I think that our perception of language is individually tuned, beyond a 'general understanding' or 'social recommendations'. At least mine often is. After reading your post, Gordon, I agreed with you. Then, interestingly, I agreed with Luna also (except we do use 'cancer patients' and 'patients with cancer' - a similar discussion?)

Autistic Dad said...

Hi Luna,

I don't oppose saying somebody "has autism", but I still think "autistic" is a better fit. It depends on the context, but in general I think it comes down to how you perceive autism. Is it a condition that attaches itself to an otherwise 'healthy' brain and needs to be removed, or is it a fundamental element of who that person is? I tend towards the latter (see previous blog posts).

I will respectfully take issue with the idea that labelling someone autistic takes away from their humanity. That implies to me that being autistic puts you in a lower class of human being. I realise that's not your point exactly, but it's not the direction I want to go in.

Of course, we also tend to say somebody 'has Asperger's' rather than that they're, um, Aspergic (?), but that's got more to do with the name of the condition. Down's and other syndromes named after an individual (you mention Tourette's) have the same issue.

Ultimately I like to be guided by what autistic people themselves say and feel, and I know there's a division of opinion there too. Which is why it's so important to have these discussions. So thanks for commenting.

Luna said...

"That implies to me that being autistic puts you in a lower class of human being. I realise that's not your point exactly, but it's not the direction I want to go in."

Eep, no. That isn't what I meant at all! I knew I was phrasing it badly. I think I mean that it takes away from humanity in the same way that I feel like a medical specimen when the med students come in and talk about me like I'm not in the room.

And since posting this, I have thought of "diabetic" and "dyslexic". So... maybe my point is stupid. :)

Aspergerian, I would think. In fact, I've heard our behaviour consultant refer to symptoms as aspergerian.

THAT'S IT! That's why it bugs me. "Autistic" seems like it should modify a symptom, not a person. Hand flapping is autistic. People aren't. Tumors are cancerous. People aren't (by and large... have you met my mother-in-law?). But if someone feels that autism is what makes them who they are, well then I totally grok why they'd use the word autistic.

WOO! Thank you! (Yeah, so I used you as a sounding board to figure out my own issue. You'll live. :D)

(the word verification is laughing at me. It's 'fookwo', which is almost the exact sound I made when I figured it out.)