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

The Eyes

WP_20150518_19_49_08_ProPlanting sweet peas in my backyard recently I tried to remember how the occurrence of flower shades had led Mendel to explain the genetics of eye colour. Although I couldn’t recall the details, I had retained the basics from school biology. What I couldn’t remember, I realised, was the colour of Dylan’s father’s eyes – that detail I had airbrushed from my memory. But not brown, I assume, like mine: I must carry a recessive gene for sea-coloured eyes as Dylan’s are gooseberry-gray.

London Lions 005I love Dylan’s eyes: in some lights they are green and in others gray. There is no agreement about them. When Dylan was at school he would sometimes bring home worksheets describing pupils in his class: names, hair and eye colour. Each of Dylan’s teachers, it seemed, had a different view of Dylan’s eyes: one year his worksheet said blue; another teacher wrote ‘green’; yet another thought them gray. Sometimes it isn’t easy to tell what colour Dylan’s eyes are not because of the light but because, like many autistic people, he won’t let you look.


eyes 001I watched Madonna being interviewed on The Jonathan Ross Show recently – or rather I listened as background to whatever else I was doing at the time. Ross is a skilful interviewer; he establishes connections with guests which make them feel safe and inclined to be open. As a result his interviews can drift like private conversations with neither party entirely in control of where they might end. When he interviewed Madonna, however, I found myself looking up at the screen increasingly often, puzzled by the flow of the conversation.

The interaction was not as fluid as usual. Ross seemed to be struggling to find a way in or make a connection; he couldn’t lure, tempt or tease his guest. And then it struck me; Madonna was refusing eye contact. Keeping her eyelids lowered while she listened and spoke – raising them only briefly to acknowledge a question or to signal she had no more to say – Madonna sidestepped or declined Ross’ attempts to connect. Her behaviour didn’t strike me as overtly sexual; she wasn’t avoiding eye contact to project herself as demure or to smoulder (à la Bacall). Rather it seemed self-protective; Madonna didn’t want to be vulnerable through the eyes.


eyes 002For ten years I watched one of my university tutors keep his eyes lowered. A brilliant historian and Bentham scholar, as well as teaching the political ideas strand of my undergraduate course J was my academic tutor. In that capacity we had regular contact and when I became a PhD student at the same college we maintained the relationship although he wasn’t my supervisor. This man was good to me; it is him I have to thank for a scholarship to the USA and other awards. As well as a mentor he was a father-figure and friend to me; he hired me as a babysitter, invited me to lunches at his lovely home and gave me the dressing downs I needed when I went off the rails.

In all these years I saw his eyes only a handful of times. He kept them firmly to the ground; usually fixed at a point just beyond my left shoulder. Sometimes, in the early days, I would glance behind me to see what it was he was looking at. Later I realised that this was simply how he lived. Before I understood, I would delight in trying to get him to look at me. With all the wild confidence of twenty I tried every trick I knew to make him lift his eyes to mine. I managed this only a handful of times. As I remember them his eyes were pale blue (and, I now realise, anxious).

A man I loved, a history man (let’s say a surrogate dad)
put his long noble legs, scholarly elsewhere-head,
into the ordinary mechanism of his undistinctive car
and drove to where no one would know. The car park
of The Runnymede Hotel is unremarkable but for this:
a meadow border with the Thames, the weir
and grit. The 200 yards of sting and cut it took
to walk, barefoot, to the water’s edge.


eyes 003The memory of that kind and clever man has stayed with me. That he averted his gaze is not the only thing I remember about him, of course, but it is one of the things I have thought about while parenting a child who also avoids eye contact. I don’t mean to suggest more than a fragile link between Dylan and this man; at first glance they have little in common. I find it helpful, however, to think about what connects people rather than to think about difference; if I consider the reasons why other people habitually avoid eye contact, perhaps this will help me to understand Dylan.

We all avert our eyes sometimes of course. Often it is to conform to social rules – not making eye contact on the underground or in public toilets for example. Children and adults with an Autistic Spectrum Condition are usually not aware of such protocol; Dylan sometimes stares in ways considered socially inappropriate just as he ‘inappropriately’ withholds eye contact. As his gaze is never (or rarely) a result of social convention, rule-governed eye contact cannot tell me much about Dylan’s experience; it is voluntary gaze-avoidance which interests me.

Some of us avoid eye contact when we aren’t telling the truth or are bored or disagree. Students sometimes look away from me so that I won’t ask them a question. I avert my eyes in impatience. My tutor, I told myself as a student, was probably shy. Recently, as Dylan’s behaviour has become more ‘challenging’, I have paid attention to the things which provoke anxiety. Even if I cannot identify a trigger, quite often I can gauge how anxious Dylan is through his eyes. It was when I realised this that I remembered J; on the handful of times he looked me in the eye, this is what I would have seen had I understood what I was looking at.


eyes 004Though he does sometimes look at me when I speak to him, more often Dylan looks over my shoulder at a place not dissimilar to the point at which J would fix his eyes.  When he was very young Dylan rarely if ever made eye contact. It took me a while to realise that this did not mean Dylan didn’t notice things. On the contrary, he commits every detail of a situation to memory within minutes of entering a space; with a fleeting glance Dylan mentally ‘photographs’ an environment, noting each object and the relationship of objects to each other.

The speed and accuracy of Dylan’s observations is impressive; that he makes them while appearing not to look is extraordinary. As this seems to be a fairly common skill among autistic children and adults it is fair to assume that levels of eye contact are not linked to levels of observation. An artist friend once reminded me that we see with our brains, not with our eyes; Dylan’s brain is working so well in this respect he doesn’t need to look at something for long to understand it.

eyes 005As Dylan’s observational powers are so good I dismissed the possibility that they might be linked to his lack of eye contact. If something is working smoothly it is easy not to consider that it might also be part of a conundrum. Recently, however, there have been suggestions that autistic people may avoid eye contact precisely because of their observational powers. There is speculation (based on accounts from autistic people) that sustained eye contact is avoided because of the ability to see in so much detail. It is possible, perhaps, that autistic brains ‘over-see’; the sheer quantity of visual information bombarding the person is physically painful.

I don’t think it is about quantity of information alone; I suspect that for Dylan it is also about what he sees. I sometimes watch Dylan flinch or look away from my eyes after holding their gaze momentarily and I find myself wondering what it is he has seen. Is it my sadness? Did I give away, in my eyes, that I worry about his future? Or that sometimes I am scared? I think Dylan sees these things. Sometimes I think of this as his heightened empathy – a connection with me he has forged in the absence of language.

I find this surprising but plausible. Dylan appears to have a photographic gaze; if you combine this recording of visual information with an ability to ‘feel’, the potential for emotional overload is enormous. While we readily acknowledge that to be exposed is to be made vulnerable, we rarely consider the vulnerabilities of the person to whom information is revealed. Looking away can, perhaps, be a form of protection from seeing too much as well as from too much being seen (as in the case of Madonna). If eyes are the windows of the soul, imagine how it might feel to look through them.

The owls

eyes 006Dylan has always loved owls and my mum used to look out for any that might catch his eye. When he was around nine she bought him a set like Matryoshka dollies – one inside another and another and another, becoming smaller and smaller. This particular gift would get its eyes caught by Dylan however; within an hour he had systematically scratched them out. We could think of no reason why. Since then I’ve watched Dylan adopt other strategies with eyes that trouble him: a photograph of a friend he insists must be turned from view (‘eyes’ he says to me, pointing at them); a book of piano music with Beethoven on the cover which I continually find turned to face the stand. Some eyes, it seems, are too painful to contemplate.

The poet

Sometimes we encounter something which transforms the way we think. After years of being told to demand eye contact when interacting with Dylan I read something about a year ago which suggested the opposite; you don’t need to make eye contact, the article argued, in order to listen. Why then would you insist somebody looks at you when you speak to them? As I monitored my own behaviour I realised it is indeed the case that my ‘deep listening’ is never accompanied by eye-gaze. In meetings, when teaching or during private conversations I tend to look away if I need to think very hard about something. Maintaining eye contact actually distracts me from processing complex information; if I lock-on eye contact with someone I invariably stop listening to what they are saying.

Since reading that article I have radically changed my practice not just with Dylan but when teaching too. I no longer assume people are not listening if they are not looking at me and the only time I ask Dylan for eye contact is if I want to show him something (demonstrating an emotion with my face for example). Recently I have developed the habit of touching Dylan’s cheek with my finger if I would like him to look at me. The gesture reminds me of an encounter on a train years ago.

It was 1984 and I was travelling from Belfast to London via the overnight service between Stranraer and Euston, I found myself seated with a poet and a novelist. After a while I was seated with just the novelist as the poet spent his time wandering the train, drunk and a bit disruptive. Several times he was told by the guard to remain in his seat or he would be asked to leave the train; by Carlisle the situation had deteriorated and he was ordered off. I remember how troubled and vulnerable the poet seemed that night. I also remember his eyes averted, fixed to the carriage floor.

“Give me your hand”, his friend said to him softly: “give me your hand.”  This seemed to calm him and the two men sat holding hands. As the transport police arrived to escort the poet off the train he became distressed again: “Give me your foot”, his friend said to him, “give me your foot”. I looked on in astonishment at the man holding a hand and a foot; I had never seen communication like this before. What I witnessed that night, as well as a tender friendship between two men, was the intuitive action of someone who understood that eyes can sometimes see and feel too much.


Extract from ‘Ways of Drowning’ in Elizabeth Barrett (2005) The Bat Detector. Wrecking Ball Press