Off (With) The Top Of My Head: autism and eye gaze

top of head 005I’m not much of a photographer. I remember a friend’s response to a picture I’d taken in Zacatecas in the 80s: he’d never seen such a badly composed shot, he said. I had only a simple Olympus Trip I explained. It wasn’t a question of kit my friend observed: the picture had no focus or sense of perspective. What exactly was I photographing?  I can see now what he meant. The only decent photos I took in Mexico were of my friend Sylvie. But the face is such an obvious focus anyone can manage a portrait shot can’t they?


WP_20150526_15_40_43_ProIt turned out to be just as well I could line up people in my lens: photography was to play an important role later in my life. In the early 90s, when Dylan was diagnosed autistic, I was encouraged by a speech therapist to use photographs with Dylan. Initially the pictures I took were of people: family, friends, teachers and health professionals. Once I realised how helpful these were to Dylan I added places and activities: hospitals and schools; soft play centres and swimming pools; walks and cafés. Soon, I was habitually photographing every aspect of our lives.

At first I used photographs primarily for educational purposes – to support vocabulary development or teach colours for example. Later, Dylan’s photo albums had a more therapeutic function, offering comfort and reassurance. Although digital images have almost entirely replaced the albums I once made for Dylan, I still use printed photographs to explain things or to offer choice. Perhaps the photos I most enjoy using with Dylan are those which support social interaction – the storyboard of a trip we have enjoyed, for example, through which we can share memories and build personal narratives. As well as developing a sense of belonging and security, then, photographs empower Dylan in that they help him to shape and make meaning of his life.

In these various ways photographs are a central part of our lives. Over the years I have found myself becoming increasingly interested in the visual world. Nowadays I rarely leave home without my camera and I spend as much time taking photographs to please myself as to share with Dylan. I would like to think that I would never take as terrible a snap today as the one I took in Zacatecas.


top of head 004Soon after my daughter left home in 2010 I realised I no longer appeared in the photographs documenting Dylan’s life. Always behind the camera, I had become invisible – a shadowy, implied presence out of frame. It was as if I had become non-participant observer in my own narrative. Would I look back at these photographs in my old age, I wondered, and ask who and where I was? I became fascinated by the concept of witness. If my life was unwitnessed, had it really happened? How could I be sure I had been there? And – the ultimate question – did I exist?

Simultaneously, a Selfie revolution was happening. Although mobile phones are credited with the rise of the self portrait, the technology did not create it; the long and rich history of the Selfie is on display in the National Portrait Gallery. What has changed, perhaps, are the reasons why we self-document. Some of our motivations now may be similar to those of 19th century men and women: to claim status within a group, perhaps, or to demonstrate a social role (mother, let’s say). The modern Selfie, however, seems more preoccupied with the process of self-witness; we are driven, it seems, to record our every footprint in the sand. There is also, perhaps, a sense in which Selfies enable a process of self-surveillance. Such self-witness and self-scrutiny can, I imagine, be helpful where there is ‘fragmented identity’; indeed some autistic children (including Dylan) seem to benefit from regular mirror checks which may not be unlike a series of Selfies.

While the mobile Selfie may offer support to some autistic children and adults, however, it couldn’t help when my daughter left home. For a start I am hopeless with technology and tend not to use a mobile phone – only recently have I upgraded to one which can even take photographs. And, more importantly, that sort of self-witness was not what I was interested in primarily. While individual witness has its place, what I wanted to document was Dylan’s life in community; I needed a way for Dylan and I to record ourselves with the camera, as my daughter and I had once done.


WP_20150526_15_39_56_ProIn the last few years I’ve supervised several undergraduate projects in special schools. Quite often my students want to focus on the pupil voice and one method which always proves popular is collecting data by camera. Visual research methods can be more appropriate than trying to interview pupils and the photographic data produced by young people in special schools is always fascinating. When I’ve supervised such projects I’ve often reflected that it would be so useful if i could do something similar with Dylan. His learning disability is, however, more significant than the young people with whom my students typically conduct their research; besides, I told myself, even if I could teach Dylan how to use my camera he wouldn’t have any interest.

Even so, in a curious moment one day I gave my camera to Dylan. It’s an easy camera to use; a point-and-shoot model not dissimilar to the Olympus Trip I used in the 80s. As I showed Dylan the aperture I tried to remember not to give him my bad habits; I still have a tendency to hold the camera to my face for the view finder. I’ve learned to live without the whirr of film rewinding once it has been exposed but what I have never been able to get used to is the fact there is no audible click when I take a picture. So on this particular day I was posing for Dylan and urging: Press it Dylan. That’s right just press it. That little button see. Can you press it? – not realising all the time I was saying this that, without my hearing, he had. Several times.

When I took the camera from Dylan, assuming the experiment a failure, I was shocked to find six or seven photographs. I might have been wrong about Dylan not being able to use a camera but I was right about his lack of interest in it; he had taken these shots so nonchalantly I hadn’t even realised. It wasn’t just an apparent lack of interest though; far from there being any danger he would draw the camera to his face like his old-fashioned mama, Dylan had barely lifted the camera waist-high. If he had looked through the camera lens at all, I reflected, it had been fleeting and sidelong. Although I was surprised and delighted, there was a slight issue; every one of the photographs Dylan had taken of me lacked a head. I encouraged Dylan to try again giving instructions such as ‘arms up’, ‘look through the window’ and ‘see mummy’s head’. Eventually, after numerous attempts, Dylan took his first photograph of me. This could be the start of a new way of seeing, I told myself.

I was right but (as is often the case) not in the way I’d expected. I deleted the headless photographs which Dylan took that day, assuming they were no more than beginner errors. Since then, however, there have been dozens of headless photographs. Chopping off my head with a camera is, I have come to realise, one of Dylan’s default positions. Usually I delete these photos but some have survived; the examples above date from October 2012 with the most recent taken a couple of weeks ago. The other thing Dylan quite often does is top slice my head as in the following pictures.

I had assumed Dylan’s photos resulted from a combination of lack of interest and the tendency not to look directly through the camera lens (in the same way that he looks peripherally at the world). But recently, while watching Saskia Baron’s film The Autism Puzzle, my attention was caught by Professor Fred R. Volkmar describing his work on eye tracking (49-53 minutes).

Volkmar’s research shows that, across the autistic spectrum, children and adults tend to focus on the bottom half of the face – specifically the mouth – and to ‘cut themselves off’ from information in the top half of the face. If it is the case that for Dylan the mouth is the focal point of the face, it would be perfectly natural for him to focus on it when he photographs me. Might an equally plausible reading of Dylan’s photographs, then, be not that the heads are missing but that the mouths are centrally placed? Certainly this would seem to be the case in the second set of photos where my mouths line up pretty well.

In last week’s post I reflected that perhaps Dylan averts his gaze because eyes are too painful to look at directly. Although initially I assumed that Dylan’s headless photographs also arose from his tendency to look away, it may be that it is not so much that he is avoiding my eyes as focusing on my mouth. Could Dylan have ‘learned’ the shapes the mouth makes when it talks – a form of lip reading perhaps? These speculations are off the top of my head (so to speak) but if there is any basis in them it would, of course, be another argument for not demanding eye contact from an autistic adult or child. Maybe what I should be saying to Dylan is: Look at my mouth, Dylan. Look at my mouth.


Saskia Baron [Director] (2002-2003) The Autism Puzzle. BBC film

11 thoughts on “Off (With) The Top Of My Head: autism and eye gaze

      • I would love to hear what happens 😉 Looking at his pictures, and knowing what the world looks like from the lens piece of a camera, he’s looking at your center mass, not seeing features that give communications, just as if looking at a stone obelisk. The edges are not important, his pictures show an object, not a person which we normally identify with the face or body language. I suspect that you were talking to him when he caught your lower face, the sound was the focal point. I have no idea what I’m talking about but that is what I saw in his pictures.


      • Ah that is so interesting – I love your observations. You’re quite possibly spot on when you say that in the photos which did catch my lower face I was talking to D – and if this is indeed the case it would give more support to the idea that it is mouth gaze, not eye gaze, which supports communication if you are autistic. I have never used the phrase ‘mouth gaze’ before but I like it and will from now on. Again – thank you. I love fresh eyes on a conundrum 🙂

        Liked by 1 person

      • I have a huge interest in consciousness and AI. I think that where humans are on the edge is where we learn the most about ourselves. When we learn to communicate with them, we learn what it means to communicate. When we learn how they think we learn what it means to think. If his focus of attention is dimmer than normal, perhaps there are ways to assist his focus? I do not know. I know that learning about such things teaches us all about ourselves.

        Liked by 1 person

  1. I really enjoyed this post Liz on so many different levels. What a perfect way to share memories and build personal narratives with Dylan. It is an interesting point about the concept of witness and by enouraging Dylan to in turn take photographs you became again visible, no longer “a shadowy, implied presence out of frame.” Perhaps the headless shots which Dylan has taken caputre something else too, the different ever changinging scarves, earrings, beads, in some small part caputuring some of the essence of you.


    • Hello Kathy! Thank you for reading and for your lovely comment. Of course you’re right – it is not necessarily in our faces that our spirits live 🙂 Now I’m liking the idea that Dylan notices my accessories and can maybe even tell what mood I’m in by them!

      Liked by 1 person

  2. I so enjoyed reading this, all of it, really, but especially the end, where you begin to wonder — a lovely aha! moment — whether Dylan’s unusual framing of his subject, with the lens focused on the mouth instead of the eyes, is a declaration of interest rather than an act of avoidance.

    A small part of my fascination must have to do with the memories it triggered of my own photographically undocumented parent and the home movies he took of me and my brothers growing up. He, too, had a habit of slicing off the top of our heads, as you put it. It had become a tired family joke, usually told by my mother. She put it down to carelessness, but I always wondered whether there was a logic to my father’s framing, as if he were deliberately undermining the truth claim of the images captured on screen. His movies were like those selfies with the one arm extended upwards and the camera almost visible. An early selfie, that is, before we got so comfortable documenting and curating our online selves 🙂

    So much here, thanks.


    • Hi S – thanks for reading and for your comment. Your observation about your dad’s movies (which I love!) reminds me that some of my observations about Dylan may be nothing to do with autism necessarily, just an individual thing. Of course I have no idea whether any other autistic person would do with a camera what Dylan does. Might make a nice small study though for anyone working in the field. I love it when you write about your parents on your blog. It is usually your mother who you mention so it’s quite nice for me to hear this little snippet about your father 🙂


  3. Pingback: Learning Through Dialogue: reflections on blogging (ii) | Living with Autism

  4. Pingback: Day 72: ‘Master Narratives’ | Living with(out) Autism

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.