How to Visualise Autism?

I very recently presented a paper to a group of my colleagues (that is, a bunch of PhD students in social anthropology, such as myself) at a conference. I’m not going to go into too much detail about the topic of the presentation, as this isn’t what this post is about, but maybe I’ll just give you the main gist of my argument, in case anyone’s interested.

I basically said that to claim that ‘many autistic people find it difficult to recognize, manage, or express their emotions’ might well be true, but it’s also very inaccurate. I said that we need this statement to be our starting point, not our bottom line. I made the point that it’s never enough to say “this person can’t manage their emotions”. Instead, we – and by ‘we’ I mostly mean researchers, but potentially anyone – need to ask why this person can’t seem to recognize, manage or express their emotions. And I said that “because s/he’s autistic” is never a good enough answer. Emotions, I said, are very complex processes, that involve one’s brain, one’s body, one’s memory and experience, one’s social environment and upbringing, and one’s sensory input. So really, any discussion about emotions has to take all these different factors into consideration. It’s hard work, of course, but anything less would be pointless.

Anyway, that’s more or less what I had to say. I intend to pursue this line of thought over the next year or so, and I’ll try to keep you posted about where this is headed.

What I do want this post to be about is something a bit more mundane, but interesting nonetheless. Here’s the thing: while I was preparing my talk, I tried to think about what I should put in my PowerPoint presentation. Presentations – or so claim the experts – should be accompanied with some form of visualization. These are supposed to provide another focal point for the audience, making it easier to concentrate, and appeal to their sense of sight while the speaker tends to their sense of hearing, which supposedly has the effect of making the whole thing more interesting. Or something like that.

Anthropologists are lucky, in that they often get to accompany their presentations with beautiful pictures from far away countries; dramatic landscapes, interesting architecture, curious festivals, and exquisite costumes. Sometimes, interesting or unexpected contrasts do the trick, for example an elder from a tribe of hunters-gatherers using a smartphone, or devout Muslim women burning off calories on the treadmill at the gym. Or how about this highly recognizable photo? These are often tricks, of course. A Mongolian rural elder holding a smartphone might mean nothing more than that he was handed a smartphone a minute earlier. These types of pictures may well just be creative ways to appeal to the most basic human tendency to admire – or revere – that which is different, unexpected or new. But so what? Everyone likes looking at nice things. And if a beautiful image helps you tell a story, all the better.

But as I went through my mental image-bank to try and figure out what I might use as visual references in my own presentation – about autistic adults in the UK – I very quickly realized that in fact I don’t have any such images. I took zero pictures during my fieldwork. And even if I did take photos, I would never display them publically, because my interlocutors’ anonymity is a very important concern of mine. But even, say I could find a way to get around that, like, for example, showing a picture of a person whose face isn’t shown. Fine, ok, but still; what am I showing, exactly? A picture of a person whose autistic? As if her hair, clothes, or – what, exactly? – tell any story at all about this person as someone who is autistic. It would be meaningless. Just a picture of a person.

I’m reminded of the picture that’s displayed in the English Wikipedia article on autism. When I was just starting out in the field, I took endless trips to that Wikipedia article for background and general reference (the merits and many shortcomings of using Wikipedia as a source on autism is an issue for another post. At any rate as a novice in the field, I was unaware of the many issues this presented, and found it very useful). If you visited that article more than once or twice, you probably know what photo I’m talking about: a little red haired boy, with mostly his back to the camera, standing in front of an open cupboard and stacking cans in a high column, reaching as high as the boy’s head.

I’m actually quite amazed by how long this image has stood there, uninterrupted.

I do like it, though. It may just be me, but there is something very empathic about it. This boy is enjoying himself (I imagine) by doing something that might be slightly unorthodox, but so what? I love that the photographer just lets him have that fun, not interrupting him, not even to face the camera when the picture is taken. The scene sort of makes me want to sit beside this boy and make my own column of cans. Or maybe even, if he lets me, make one together.

The person who took this photo (I did some detective work… Couldn’t resist. And yeah ok, this information is just written there in the file page, so it’s very lazy detective work) is the boy’s mother, Nancy J. Price. Apparently she’s a writer, among many other things, and you can see her webpage here. She took this photo in 2003, which would mean the small boy should be 12 or 13 years old. And wait a minute while I look… Yes! What do you know? In her webpage there are some current photos of her now teenage son, whose name is Quinn by the way. They’re there under the heading ‘My Favorite Face of Autism’. How can it not be? These are priceless.

But returning to the topic at hand, can there really be a ‘face of autism’ from a broader point of view? (That is, not that of a mum). Honestly, what would it even look like? Would it be a child or an adult? A boy or a girl? Man or woman? White or black? Would it be a university professor or an artist? A sci-fi fan or a social activist? Would they speak, sign, type? Would they be happy or upset? Lonely or surrounded with friends?

Invariably, any choice as to how to visualize autism would be problematic. It would create a bias, perpetuate a stereotype, deflect attention, or just create controversy. The very feature of autism, as far as I can tell, is diversity.

I eventually gave my paper without a PowerPoint presentation, and instead I just let the text – heavy with quotes from an autistic interlocutor of mine – to speak for itself. It worked out well, I think, but I can’t help but feel that there’s something I’m still missing. That by avoiding the issue I’m not doing it any justice.

Any ideas?

Related Posts:

• The Logo
• About
• How to Write about Autism
• December Clouds