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?

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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.

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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.

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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.

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References:
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.

Madonna

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.

J

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.

Dylan

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.

Reference:

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

Dylan And The Dinosaur Of Anxiety

WP_20141228_18_22_41_ProSince last June I’ve been puzzling over some ‘challenging behaviours’ which Dylan developed out of the blue after twenty years of gentleness. The behaviours began with periods during which Dylan threw himself around violently and progressed to physical attacks on others, usually focused on ears. Prior to these episodes Dylan would often go into a trance-like state and during the incidents would appear not to recognise familiar people. At these times Dylan would be ‘unreachable’ and afterwards appear exhausted and seem not to have any recollection of events.

I have described my search for possible explanations for the behaviours, and the methods I used to document them, in previous posts (for example here and here). As my approach to working with Dylan (who doesn’t use speech to communicate and who has a significant learning disability) has always been that behaviour is communication I focused initially on environmental factors. There had been so much change in Dylan’s life that this seemed a likely explanation: in the previous few years he had experienced the death of his Gran and departure of his sister and had left education and care settings where he had been happy. Furthermore, Dylan’s provision on leaving school lacked the consistency he needed. These changes seemed a plausible explanation for Dylan’s distress.

The episodes declined following some adjustments to Dylan’s day care: full-time rather than part-time attendance, a change of support worker and an increase in Occupational Therapy all seemed to help. Other possibilities presented themselves. The ABC charts I used to analyse the behaviours suggested, for example, that they may be linked to food. Removing sugar from Dylan’s diet appeared to have an impact; the incidents which had been happening daily reduced to around once a week. I continued to puzzle, however, over behaviours which, while less frequent, became increasingly severe.

Neurological investigations

WP_20141228_18_22_49_ProDue to the symptoms which accompany the behaviours (the ‘absences’ and exhausted aftermath) Dylan’s GP referred him for neurological investigation. Epilepsy and schizophrenia can develop around the age Dylan is currently so I had specific concerns that Dylan’s behaviours may be due to the onset of one or both of these.

It took a while for Dylan to access an appropriate clinic. The first consultant we saw had no experience with ‘non-verbal’ patients with learning disability and autism and simply shook his head. The colleague he passed Dylan onto, however, was experienced and skilled. Dylan doesn’t tolerate medical interventions (I have written about this here and here) so I knew it would be challenging if recommended. Happily, the consultant whose clinic we had arrived at understood this.

WP_20141230_18_53_14_ProWithout medical investigations (MRI, EEG) he couldn’t say definitively but in his view, the neurologist said, Dylan probably wasn’t developing epilepsy or schizophrenia. The pattern of the episodes – their incidence and duration and Dylan’s response during and after – did not fit with the classic presentation. He couldn’t rule it out entirely – there were instances of epilepsy triggering the sorts of behaviours I had described – but these were rare.

It was much more likely that Dylan’s behaviour was a reaction to environmental factors or maturation. Puberty, the neurologist pointed out, can trigger emotional reactions which are difficult for any young person to make sense of; for Dylan, these feelings could be quite confusing. ‘He is a strong young man’, the consultant observed. ‘And you, if you will excuse me saying, are not a young woman or strong like this’. Keeping Dylan physically active would help, he told me.

I preferred to believe it was consultants who were getting younger rather than I who was getting older, I told him. But, I reassured the consultant, Dylan’s schedule was filled with OT and sports activities which, I agreed, were helpful. The consultant smiled. Then he told me how – years before, while practicing in WP_20141231_16_56_00_ProGermany – he had observed that the adults with learning disabilities in a institutional setting he visited exhibited challenging behaviour for 51 weeks a year. But once a year, he told me, the residents were taken on holiday where they had access to expansive grounds and were able to run free. During this week each year, he said, the behaviours disappeared.

The neurologist realised (I think) that Dylan has an active life and was not intending to draw a direct comparison between Dylan and the adults in his story. What he was reflecting, however, was that behaviour is usually communication. In a follow-up letter to me he wrote: “I thought that it was most likely that the behaviours you describe are dissociative coping behaviours. I suspect that they help Dylan to deal with some form of distress… Hopefully you and Dylan’s other carers will, in time, be able to learn even more about what is likely to trigger attacks so that his care can be modified and that attacks can either be avoided or contained more effectively.”

Environmental explanations

This makes sense to me. It is also the sense which Phoebe Caldwell, in her marvellous book Finding You Finding Me (Jessica Kingsley, 2006) makes of such behaviours. It isn’t a new book but I stumbled across it (via a circuitous route through poetry and Rowan Williams) only recently. How could I have missed it? I haven’t finished reading it yet but already it has changed my world. I’ll say more about the book in a later post. For the moment I want to share just a couple of things Caldwell has to say which seem particularly pertinent:

Families may be at their wits’ end – and sometimes feeling guilty at their despair… I meet staff who are being asked to cope with impossible levels of aggression and management who are unable to come up with solutions. In many cases, person-centred planning is interpreted as how we can fit individuals into our agendas. Quite a number of the people in the most deep distress are boys fighting their way through the hormonal jungle of puberty. (pp. 25-26)

As for those whose severe learning disabilities are compounded by autism and who cannot speak for themselves, all we can do is judge from their behavioural responses to people and their environment. From the evidence of the sometimes extreme behavioural distress, one has to presume that many of them do continue experiencing fragmentation [a process arising from overload in which sensory experience breaks down ] throughout adult life. They cannot help themselves through logic and communication: their only resort is to develop coping strategies, which can so often include severe aggression. (p. 35)

WP_20150106_16_15_42_ProAs well as Dylan’s referral to a consultant neurologist I had requested a referral to a consultant psychiatrist; while this dual track (medical and social) approach could have resulted in conflicting verdicts, happily on this occasion the professionals agreed with each other (and with Phoebe Caldwell). The psychiatrist’s preliminary assessment, like the consultant neurologist’s, is that Dylan’s behaviours are likely to be due to environmental triggers. In particular, it is suggested, Dylan’s distress is probably caused by anxiety.

I have found this triangulation of professional perspectives helpful in that it has allowed me to go forwards with more confidence; a convergence of views on cause helps clarify response. In his letter to me the neurologist described Dylan’s behaviours as functional in that episodes ‘move [Dylan] on from experiencing distress to a place in which he cannot recall the distress and perhaps feels physically exhausted’. The psychiatrist has suggested that it is possible to help Dylan to ‘unlearn’ a behaviour that he has come to associate with such release from stress. At the moment Dylan is so fixated on removing my ears that the possibility I can re-direct this behaviour feels out of reach. The fact that the psychiatrist believes this is a reasonable goal, however, keeps me optimistic.

The unlearning

WP_20150114_08_23_04_ProI have had some unlearning of my own to do. My work in education means I am used to a cycle of monitoring, assessing, recording and reporting. Going into my initial meetings with professionals I reflected that I was probably ahead of a system which would (I presumed) require me to produce data I had already collected. It was with a sense of resignation then (not, I hope, arrogance) that in advance of the meeting I asked myself what a psychiatrist might tell me that I didn’t already know. Happily, however, there turned out to be plenty. With building interest and admiration I watched the psychiatrist bring her professional knowledge and understanding to the data I had collected. While I might be able to observe and record my son, I realised, what I didn’t have was this particular lens through which to filter the material. What I also lacked was the wide experience of other young men like Dylan which the psychiatrist could draw upon (for while Dylan may be different he could also be similar). My data charts had lots of good notes in them but they were in search of a tune; what the psychiatrist did, I reflected afterwards, was orchestrate.

The Dinosaur

WP_20150114_08_22_33_ProWhile supporting Dylan to ‘unlearn’ (inappropriate) coping responses will be useful, it is obviously preferable to modify the environment so as to reduce Dylan’s distress. The psychiatrist’s ‘orchestration’ of my observations of Dylan therefore focused on the identification of possible explanations for his anxiety. I liked the way she wove observations together to make connections I hadn’t considered.

One issue raised, for example, was that the first occurrence of the behaviour happened while Dylan was in overnight respite the week after I had taken my first break without him (which I wrote about here). It might be the case, the psychiatrist suggested, that although Dylan appeared to cope while I was away perhaps the following week, when Dylan returned to respite care for his regular overnight stay, he was made anxious by uncertainty as to how long I would be gone.

Some of the most challenging incidents have happened while Dylan has been viewing DVDs and during the meeting we were able to link possible anxiety about separation with Dylan’s reaction to certain film sequences. One scene which seems to cause Dylan particular distress is a moment in Dinosaur when an egg becomes separated from the mother. Those involved in Dylan’s care had been aware that such scenes can trigger behaviours. We had also noted the impact of my short break on Dylan and tentatively used the word ‘separation’. What the consultant was able to do, however, was confirm that this might be relevant while at the same time signalling its necessary complexity.

Necessary Complexity

WP_20150120_15_01_11_Pro-1The complexity is that we might have two dinosaurs rather than one. Because if it is the case that a son or daughter is anxious about separation, a mother’s intuitive response (especially an anxious mother) can be to avoid separation. Instead of planning for Dylan to spend increasing time away from me as preparation for leaving home, my instinct now was to keep him close. The dinosaur of anxiety could be mine, then, aswell?

But the psychiatrist wasn’t going to allow this; her job was to get rid of the dinosaur not let another one into the room. Dylan she said (offering another version of what the neurologist said) is in his prime; he doesn’t want to go collecting leaves with his mum. I looked at her aghast. How did she know that’s what we’d been doing at the weekend? B-b-but he likes doing that, I retorted. He liked it, she pointed out, because it was what he knew. What I needed to do was support him to do other things too, confidently and without me. In order to deal with separation anxiety, it seems, we have to learn to be separate. That will be a dinosaur of a challenge for me as much as for Dylan, I know.

The metaphor

WP_20150120_15_02_10_Pro-1Shortly after the meeting my attention was caught by a ‘hatch your own dinosaur egg’ pocket money toy (for £2.99). I couldn’t resist buying it as a Christmas stocking filler for Dylan. You put the egg in a jug of cool water and increased the size of the container as the hatching progressed; perhaps looking after the egg could help re-shape Dylan’s response to the film sequence?

The egg showed no sign of life for a few days and Dylan paid no attention to it. One evening, however, a crack appeared, quickly followed by a green nose. Dylan seemed alarmed so I moved the egg from his bedroom to the kitchen where we could keep an eye on it together. The rest of our holiday was spent checking the egg. Dylan’s response shifted, slowly as a dinosaur, from anxiety about its presence to curiosity. By New Year’s Eve the birth seemed imminent and Dylan interested. If it hatches before midnight, I told him, we’ll call her Eve. If she appears tomorrow she will have to be New Year’s Day-sy.

And so it was that after twelve days Daisy was born. Since her arrival she has continued to grow as Dylan – who seems to really like her – bathes with her twice a day. Unfortunately Daisy’s skin seems to be ‘pruning’ badly (the warm water I suspect) and we may soon be faced with a tough decision about the future. Daisy may only be a metaphor, but she could be quite a useful one…

 Reference:

Caldwell, P. (2006) Finding You Finding Me. Jessica Kingsley

All photographs are of Daisy.

Dylan’s Life In Song: music and autism

music 024One of the things that is striking about Dylan’s school reports is their lack of agreement about whether or not he likes music: Dylan loves music; assembly causes Dylan distress; Dylan responds well to music; Dylan is not comfortable in music sessions; Dylan enjoys listening to CDs; Dylan covers his ears. 

In this post I speculate on the reasons for Dylan’s apparently contradictory response to music. Inspired by my participation in a project run by Christy at runningonsober, I include songs selected by Dylan. Christy invited fellow bloggers to tell the story of their lives in ‘six songs and a bonus’ and last week it was my turn (you can listen to my seven songs here). I am including Dylan’s songs in this post not in order to tell his life story but to illustrate his relationship with music.

Auditory hypersensitivity

In a previous post I have written about auditory sensitivity in autism and some of the therapeutic interventions which can be made. Dylan undoubtedly experiences auditory discomfort; he often clamps his right arm over his head, his upper arm held tightly against his right ear and a finger pushed into his left ear. This is canny: as Dylan is left handed it leaves his strong arm free to pull whoever is supporting him out of the situation causing him distress.

As well as being disturbed by a range of environmental sounds (children crying, dogs barking, motorbikes) it is possible that Dylan hears frequencies most of us cannot; the idea that Dylan hears in ultrasound underpins my poem sequence The Bat Detector, for example. I suspect that ‘deep’ background noise (such as heating systems, underground streams and sap through trees) is also audible to Dylan. Other autistic people have reported similar disturbance; some have posted clips on youtube which simulate this experience. Watching these videos is an uncomfortable experience and has helped me to comprehend just how powerful Dylan’s auditory disturbance may be. This hypersensitivity may, I suspect, explain both the pleasure and the pain which Dylan can find in music.

Music as discomfort: environmental noise

Brittany 13 175It is possible, I think, that this backdrop of environmental noise reduces the clarity of music in the same way that it interferes with Dylan’s processing of spoken language. Dylan may find music as uncomfortable as language in certain contexts (busy and open spaces, such as assembly halls, for example). Conversely, some environments may be particularly comfortable places for processing music. I’ve noticed, for example, that Dylan enjoys listening to music in the car. While some songs still cause him discomfort, the interior of a car seems to be good for listening. This also seems to be a useful space for Dylan to process language; he often extracts meaning from language more easily in the car. Perhaps the very features of private transport we complain about (sealed and isolated from others) are helpful to Dylan.

music 029The ultimate privacy in listening is via headphones. In a previous post I’ve written about the use of headphones to block or clear out background noise, for example via auditory integration therapy. Until he was a teenager the only music which Dylan would listen to (with one exception which I’ll return to) was nursery rhyme audio tapes. When I persuaded him to accept a nursery rhyme CD my daughter offered to put it on an i-pod shuffle for Dylan. This created challenge as well as possibility. Although we could now use music to lessen Dylan’s discomfort in the community, if we didn’t get the choice of music right it would have the opposite effect: delivering music which Dylan found painful directly into his ears was far worse than an uncomfortable environment.

music 014Don’t put anything on there your brother doesn’t like or know already, I instructed my daughter. I would discover her sneaky inclusions on the ipod from time to time as Dylan pulled the ear buds out and let me listen in (usually to a french pop song). One of the introductions my daughter made was crucial, however, in moving Dylan away from nursery rhymes; she had noticed his interest in one of my CDs and put this onto his shuffle. When Dylan first started to bring me the CD  (a collaboration between Elvis Costello and Anne Sofie Von Otter) I thought he was anticipating my behaviour rather than expressing a preference of his own. Later I would realise that it wasn’t that Dylan thought I wanted to listen to it but that he did. Dylan now has this album on CD, i-pod shuffle and i-pad. Is it possible, through this album, to identify the features of music which bring Dylan particular joy?

Music as joy: pitch and key

music 031Part of Dylan’s hypersensitive hearing involves a discriminating ear; I believe he has perfect pitch. Dylan cannot bear the sound of school and amateur choirs. He finds music played through poor equipment painful. He cannot endure piped music through public address systems. This may be partly due to the background noise of electronic equipment but I have seen Dylan react with equal discomfort to poorly pitched acoustic music and a capella singing. Many of Dylan’s musical choices may therefore be determined by the quality of sound; I’m sure the fact Von Otter is classically trained has a bearing on Dylan’s experience.

music 027It isn’t just about pitch though; Dylan may also have particular key preferences. When Dylan was very young  a musicologist, having observed Dylan’s engagement with music one evening declared: I think it’s Eb and Bb he likes – the language of the blues. Over the years I’ve seen this hunch borne out. Although at home Dylan only listened to nursery rhymes, at primary school he had a jazz blues tape which one of the teachers made for him and which Dylan listened to if he became anxious during the school day. Among Dylan’s favourite CDs today (though not making it into his final seven) are Bettye LaVette, Nina Simone, Etta James and Ella Fitzgerald.

Feeling the music

There have been a number of cases over the years of autistic children and adults with extraordinary musical talent. This sits quite comfortably in my mind with the gift for number which some autistic people demonstrate; music and mathematics share the same underlying structures. For these purposes, however, I want to focus on people such as Dylan who don’t show any obvious musical gift; while I’ve seen Dylan pick up a pair of drumsticks and keep effortless time, he doesn’t play an instrument. At home he lets me play piano and recorder but draws the line at harmonica; his arm clamps quickly across his head if I so much as pick it up.

music 012Perhaps for this reason it’s taken a while for Dylan to tolerate my Bob Dylan collection. It is only tolerate though: I bought Dylan a copy of the Essential Bob Dylan last Christmas but it’s never been out of its case. Could this be about pitch and key? Is Dylan less enamoured of Bob than Nina because of the way they sound? I don’t think I have encouraged one rather than the other; I play them both equally and with equal joy. I could draw this distinction though; I don’t dance to Bob Dylan.

Over the last year my Dylan has discovered that he loves to dance. Every evening he chooses some music then holds his arms out to me. When I say ‘dance’ I should qualify this: it is spinning rather than dancing. Dylan takes you by the arms and with his eyes closed he spins clockwise as fast as you are prepared to accompany him. I have never known him become dizzy; he would spin all night if I let him. Every trick I try I cannot last more than one song. It ends with me clutching the table: I’m sorry Dylan mummy’s dizzy. This, then, is music as sensory pleasure: choose a singer with perfect pitch; give her the Ebs and Bbs; lay down a rhythm; and spin, spin, spin.

music 011One of the distinctive features of jazz and blues is syncopation. Syncopation refers to the interruption of expected rhythmic patterns; instead of the beat our ear expects (based on the rhythm already established within a piece) we encounter variety. Miles Hoffman explains this as “a disturbance or interruption of the regular flow of rhythm” through a “placement of rhythmic stresses or accents where they wouldn’t normally occur.” (Hoffman, 1997). Given that autistic people are believed to favour the expected over the unexpected, an enjoyment of syncopation may appear a surprising feature of Dylan’s engagement with the language of music.

A research project exploring the neurological links between language and music has emphasised the parallel structures of conversation and jazz (LaFrance, 2014). Charles Limb, a musician and medic at John Hopkins, mapped the brains of jazz musicians and found that areas of the brain linked to meaning ‘shut down’ during improvisational jazz sessions. Jazz, Limb suggests, is based on structure and syntax rather than semantics: “It doesn’t have propositional elements or specificity of meaning in the same way a word does”. This, Limb argues, is more complicated than language:

If the brain evolved for the purpose of speech, it’s odd that it evolved to a capacity way beyond speech…I have reason to suspect that the auditory brain may have been designed to hear music and speech is a happy byproduct.

Music and feelings

music 015While Dylan’s interest in jazz rhythms may be underpinned by structure and syntax, his song choices also suggest a role for semantics.  As well as the technical issues of acoustics, rhythm, pitch and key, Dylan’s engagement with music appears to be emotional. Just as you and I might associate a particular song with happy or sad times, so Dylan seems to have mapped some of his strongest memories on to music. Only recently have I realised that his refusal to listen to this U2 CD is probably because my ex-husband and I were listening to it at a crucial time in the breakdown of our marriage. Sometimes I cannot work out what the associated memory might be but I’m sure it is there; a Tears for Fears cover we are not able to listen to on a Patti Smith album for example.

Dylan’s songs

music 009When Dylan started taking an interest in music I decided to help him build his own music collection. He only ever buys duplicate copies of my CDs, however. To try and extend Dylan I have bought him different CDs by artists he already knows but if he doesn’t recognise the covers he won’t play them. For Dylan, visual information is an important part of his engagement with music.

This means that Dylan’s seven songs are derived from my collection; his individual preferences are, nonetheless, apparent from the music he chooses. Some of the songs have particularly happy emotional associations for him I think; I’m not sure why he likes others but it could be the rhythm, key or quality of sound. I say a few words about what I think may inform Dylan’s selections. To support Dylan to make his choices I spread a long list of his favourite CDs on the floor (prompting Dylan to add to and subtract from these).

music 008

I then invited him to choose one CD at a time until we had seven. I made a visual group of the seven and gave Dylan an opportunity to make changes (he made one: Edie Brickell and New Bohemians lost out to a compilation blues CD). Here is the final result: Dylan’s seven songs. Enjoy 🙂

music 020

Song # 1: Someone Like You by Adele

I would have said Adele 21 was Dylan’s favourite CD so I think this is a secure top spot placing. I suspect that Dylan already knew the album before I acquired it; perhaps he had heard it on the school bus. Dylan particularly likes dancing to Adele. I think he likes all the tracks on the album; I’ve hazarded on this one.

Song # 2: Like an Angel by Anne Sofie Von Otter

Costello and Von Otter’s For The Stars was the first CD Dylan took an interest in. I think he likes the quality of Von Otter’s voice. Like an Angel is a trance-inducing song for Dylan; he can seem close to ecstasy when listening to it.

Song # 3 Shake it Out by Florence and the Machine

Mashee Dylan says to me, Mashee. That’s also what he calls treadmills and cross-trainers; I sometimes wonder what sense Dylan makes of a CD having the same name as the kit in the gym. Perhaps it amuses him. I am a bit surprised Dylan put Florence in 3rd place but I can see why he’d like her voice and the use of orchestral music.

Song # 4: Fields of Gold by Sting

My ex-husband was a fan of Sting and used to play this album a lot. I have a memory of him dancing to it with Dylan in his arms. I bought this CD for myself quite recently after a song on the radio jogged my memory. I was surprised by the way Dylan immediately claimed it and bought a duplicate copy plus a copy for his i-pad. I think he may have a deep memory of dancing with the man he knew for years as his dad.

Song # 5 Nobody’s Baby Now by Nick Cave

Dylan pulled Let Love In off my shelves recently and wanted me to play it. Since then he has been very attached to this album. I’m not sure why but, again, I wonder whether it is a deep memory of my ex-husband who used to play this album. Dylan was insistent that this was the youtube clip he wanted me to use.

Song #6 Night and Day by Billie Holiday

Dylan included a compilation CD of women blues singers in his top seven: lady sings the blues night & day. I’m not sure if he has a favourite song from the collection but I think he’s happy with this one; when I set the clip playing he came running to look. Dylan likes me to play this compilation CD. I think he associates it with good times and dancing.

Song # 7 Hide and Seek by Imogen Heap

I don’t know why Dylan is so attached to Imogen Heap’s album Speak for Yourself. I bought the CD in 2012 after this song was played at the funeral of a friend. It has no connection for Dylan yet this is the song he seems to particularly like. My ex-stepdaughter is called Imogen and I have sometimes wondered if this might explain Dylan’s attachment to the CD; he certainly likes me naming it. Imogen Heap, I say, it’s Imogen Heap. Leep he laughs, Leep.

References:

  • Adrienne LaFrance (2014) ‘How Brains See Music As Language’  in The Atlantic.
  • Miles Hoffman (1997) Syncopation.

Thanks to Christy at Running on Sober for sharing Dylan’s playlist on her blog: here’s a link.  I’m delighted that Dylan won a prize in a competition thanks to the lovely comments left by visitors to Christy’s site 🙂

‘Autisms’ And Magical Thinking: reflections on cause

hodsock 026The response to an autism diagnosis has changed significantly over the last couple of decades.  When my son was diagnosed 18 years ago the focus was on cause and cure (or ‘intervention’ as it was termed).  Nowadays, the concern tends to be with acceptance and advocacy. While this shift in emphasis can’t alter the emotional impact of diagnosis it can remove the feeling that your child is a problem to be fixed.

I don’t often think about the reasons for my son’s autism anymore and though I still try new things I no longer search for ‘cures’ in the way I once did. Instead, I focus my energy on trying to understand the world from Dylan’s perspective well enough to advocate for him when he needs me to. In this I am in general alignment with the social model of disability which argues that we are better engaged in championing social change than in looking for the cause of (and, by implication, the cure for) autism. From this perspective, a medical model of autism is unhelpful. Medical research, it is argued, is conducted within a deficit framework which problematises the autistic person and privileges ‘normalcy’.  This may (with exceptions) be the case, but  I continue to take an interest in it.  How could I not when I have such a stake in the data?

Ear Infection

I am not saying that this caused it.
It may have been the secret genes
of his tight-lipped father
(another skeleton son in an expensive cupboard school)
or the vaccine-loaded needle the GP pushed into his legs;
it may have been the 72 hours I laboured,
offering him the O-Ring world slow centimetre by centimetre.
I cannot be absolutely sure of cause.
But when I knew –  had a name for all that was not right –
it was those three days, three nights merging that I thought about.

Alone, brimming with a second child,
I was filling sticky syringes with banana medicine,
counting the headscan out (103, 104…),
fanning his hot red face, laying on lukewarm cloths.
This small child with the legs he had only just found,
swaying like a drunk, stumbling across hard tiles
to where I stood, holding desperately onto my life
(solid, dependable objects: teabag, tap, kettle). Turned at his cry,
scooped that small body up to live those days by me:
no fluid, no food, no sleep. Until, on the third day, it was over.

Neither of us thought much about it after
when he didn’t speak. Didn’t puzzle
when he stopped showing us the pictures in his books,
preferring to sort things out and line them up –
yellows, blues, reds.
Didn’t connect that by the time his sister was born
he could barely point or wave.
But later, swallowing the bitter pill of diagnosis,
I took the sickly forever lozenge
remembering those three jumbled days and nights.

I am not saying this caused it
but tonight I am gripped numb; unable to hold
my 15 month daughter  – her burning body familiar,
the high whine crazing my scalp – as she refuses,
the way her brother did, dose after dose.
It is the same pain I weep with, the same exhaustion
of the same three nights without sleep –
their lives same, fusing, and the difference me:
the fear re-wiring my mother love,
unwomanning my hands, arms, head. 

 

The poem was my first attempt at making sense of Dylan’s autism.  I must have written it within a year of his diagnosis as it was included, in all its rawness, in my first poetry collection. Reading it now I’m struck by what I left out of the poem.  I’ll return to that later – first though, some medical research.

Autism Clusters: seizures, infections and psychiatry

The link at the end of this post is to a research paper on comorbidity clusters in autism.  The study used health records of patients over 15 years of age with a diagnosis of autistic spectrum disorder to investigate the co-occurrence of other medical conditions with autism. Based on their study the authors claim to have identified three distinct clusters of autism within the population:  a group of patients  whose symptoms are associated with seizure disorders (such as epilepsy); a group who have increased rates of bowel, infectious ear and respiratory symptoms; and a third group of children who have higher levels of psychiatric disorders (including ADHD, depression and schizophrenia).

The conceptualisation of autism as a single ‘spectrum’ condition is sometimes considered unhelpful: ‘when you’ve met one autistic person, you’ve met one autistic person’ is frequently quoted as a proviso to the spectrum.  Isaac Kohane, one of the authors of the cluster study, claims that their research shows that rather than there being one autism ‘there are several autisms, each with its own specific course.’  (reported in Miller, 2013). Furthermore, the data suggest that distinct contributory factors may be involved in these ‘autisms’ with some linked to genetic and some to environmental factors.

Miller’s report on the study suggests that ‘simple patterns can emerge from even the most chaotic, complex data’. It is certainly true that there is elegance and simplicity in the three clusters described by the study. Such patterns are compelling and can be seductive, but to what extent can they impose some order on the chaos and confusion of a poem?

Making Simple:   Dylan and Cluster Two

Dylan hasn’t developed epilepsy or other seizure disorders (group one in the cluster study) and he doesn’t have a diagnosis of ADHD or present with any of the psychiatric disorders associated with group three.  He could, however, be placed in the second research sub-group which is characterised  by multisystem disorders such as gastrointestinal and auditory infections (Doshi-Valez, 2013).

hodsock 028My poem Ear Infection describes such a multisystem disorder and suggests it as a possible cause of Dylan’s autism. I’ve met other parents who have mentioned ear infection and/or abnormally high temperature as something which they particularly remember from their child’s pre-diagnosis days. While many babies suffer from such infections, these parents report particularly dramatic or acute incidents.  As well as the ear infection referred to in my poem there was another event on a day which my husband and I named ‘Black Monday’. It happened soon after the three day ear infection (Dylan was around 14 months old) and appeared to again involve Dylan’s ears/respiratory system. He had a temperature and was inconsolable with crying jags which lasted for 24 hours.  On both these occasions the extent of the infections, and their grip on Dylan, seemed to be out of the ordinary.

Although I was a new mother I was becoming used to such drama. When Dylan was just four months old I had lived through an even scarier ‘multisystem disorder’.  Up to that point, apart from being colicky, my baby had been well. At four months old I took Dylan to the GP for his vaccine shots for Polio and Hib (a strain of meningitis). The next day my baby wouldn’t feed; he was listless, floppy and running a temperature. Later that day he developed purple bruising on his legs. I delayed a couple of hours not realising the significance – by the end of the day, though, with Dylan clearly not well, I took him to the GP.   Dylan was admitted to hospital immediately where he was treated for meningococcal septicaemia.

I don’t understand why Dylan’s meningitis didn’t make it into the poem.  For whatever reason, when I wrote the poem, it was the ear infection which seemed more important. Now, if someone asks me what the cause of Dylan’s autism is I am far more likely to say ‘maybe childhood meningitis’.  It interests me how we have short and longer-term ways of making sense of our lives and experiences. I’m not sure our retrospective meaning-making is necessarily any more reliable than our immediate response to an event, except that it has had longer to be tested.

As Dylan has grown up it has become clear that he has a significant learning disability and a range of difficulties with communication which involve the production of speech as much as (perhaps more than) the desire to communicate.  The pattern of Dylan’s disability, particularly in relation to his language and learning disability, now seems to me to be characteristic of the damage which can occur to the brain during meningitis. My longer-term view that Dylan’s autism arises from the meningitis episode is largely based on my observations of the way in which his disability affects him (something which was not clear at four months or even four years old).

While I don’t mention meningitis in my poem I do include a ‘vaccine-loaded needle’. This doesn’t refer only to the Hib shot, however.  I can almost hear you (or perhaps myself) exclaim: You mean you let him have more?  I did assume, initially, that it was the Hib shot that caused Dylan’s meningitis. The investigations at the time, however,  concluded that the strain of meningitis which Dylan contracted was different to the strain which the Hib vaccine was used against. There was no possibility that the meningitis could have been triggered by the Hib vaccine I was informed; it was simply coincidence. I was told this repeatedly by medical professionals and, in the end, their  reassurance was enough for me to let Dylan have his MMR vaccine the following year.

The ear infection and ‘Black Monday’  both happened in the aftermath of the MMR shot.  I had a baby, it seemed, who did not cope well with vaccines. Even the GP, this time, advised caution; best not continue with the top-up shots, he said – at least Dylan will have got some protection. So the vaccine programme was discontinued. Later that year, after Dylan was diagnosed autistic, I claimed for vaccine damage but was unsuccessful on the grounds that the strains of meningitis had been different and there was no evidence that MMR was involved.

I was left with a lot of questions. Could the attack on Dylan’s system of the ear infection, ‘Black Monday’ or meningococcal septicaemia have caused Dylan’s learning disability, language disorder and autistic behaviour?  And if so were the effects cumulative or from just one of those infections? Were the infections triggered by childhood vaccines? And if so, was there something which made Dylan particularly vulnerable? Or were the infections entirely unrelated to Dylan’s autism –  just more crap cards from chance’s random hand?

Looking back at my poem I am struck by its uncertainty. The mother doesn’t know what the relationship between genetic and environmental factors might be and she acknowledges that either or both could be involved. What she does know, though, is how vulnerable a small child can be and how helpless a parent feels when things go wrong.

Making Difficulties: the Complexity of Cause

I am not anti-vaccine as a result of Dylan’s experience;  I recognise their importance to public health. However, I now believe there may be some babies whose immune systems are not sufficiently developed, or which are in some way compromised, and who may therefore be particularly vulnerable to early vaccination. For this reason, I didn’t have my daughter vaccinated until I judged the risk of disease outweighed the possible danger from an immature immune system.

hodsock 027Once Dylan’s vaccines stopped he developed an astounding physical robustness and since starting school has rarely been ill. His time in ‘cluster two’ was therefore only brief.  Other children, by contrast, may move between clusters or exhibit symptoms from multiple clusters over their lifetime;  someone with an autism diagnosis, for example, could begin in group two with a bowel disorder but move into group one at adolescence with the onset of epilepsy. Indeed, the data reported in the Doshe-Velez study found that a significant correlation existed between gastrointestinal and seizure disorders (though not between psychiatric and seizure disorders).

The authors of the cluster study suggest that different genetic and environmental causes may be involved in different ‘autisms’. Separating out the possible contributory factors for Dylan, however, seems fraught with difficulty. My poem Ear Infection weighed genetic as well as environmental factors in its reflections on cause and in the final stanza I refer to the impact of autism beyond Dylan  (once there is an autism diagnosis within the family it is natural, I think, to consider whether others may be affected, especially younger siblings).  Years after I wrote the poem I received some news which suggested that genetic factors may indeed have been at play in Dylan’s case, at least in part.

Dylan has two half-brothers; although I have never had contact with them what I knew about one of the boys from Dylan’s father made me wonder, in the aftermath of Dylan’s diagnosis, whether he might also be at least mildly affected by autism. In my poem I make passing reference to this.  The contact between Dylan’s father and myself was limited to financial arrangements while Dylan was growing up. However,  a few years ago an administrative error with Dylan’s maintenance payments led us to have a telephone conversation.  Dylan’s oldest half-brother, I discovered (now an adult),  had been diagnosed with Asperger’s Syndrome  and Dylan’s other half-brother was seriously ill with the bowel disorder Crohn’s disease.

More Chaos

We are a long way from the days when it was suggested that ‘refrigerator mothers’ were the cause of autism in children. However, in the absence of satisfactory scientific explanations I understand how these ‘magical’ explanations can arise.  For a while I had my own. In my poem I refer to the very long labour which preceded Dylan’s birth. I went into labour on cue on the evening of Friday 11th March at tea time. Later that evening I went into my local hospital but as my labour wasn’t progressing  was sent home again. I remained at home for the next two days while my contractions stopped and started. I didn’t want to go back into the hospital while things seemed to be progressing so slowly. In the end, though, I was persuaded to return on the Sunday evening.  At that point I had been in labour for two days and was exhausted. At around 8pm that evening, with no sign of me delivering, a midwife broke my waters. Although that sped things up, it would be another 4.5 hours before Dylan was born.

At one point, though, it had seemed that Dylan would be born earlier; just before midnight I managed to deliver the baby’s head.  ‘Here’s the head’ I heard the midwife announce. Then a lot of noise and exclamation and chaos as, apparently, the head disappeared again. In all her career, the midwife said, she had never seen a head be born and then withdraw back into the birth canal. I remember her checking Dylan’s heart and remarking that I had a very relaxed baby: ‘this little one ought to be distressed by now’. Afterwards, when Dylan was finally delivered, the disappearance of the head was passed around as an amusing story: ‘that baby took one look at the world and decided not to bother’ laughed my midwife.

Afterwards, back at home with my baby, I listened incredulous one afternoon to a radio programme telling a folk tale of how, in aboriginal culture, the grievances of the father are believed, sometimes, to obstruct the birth of the baby. After Dylan’s diagnosis, I would remember this and turn it to magical thinking as damning of a reluctant father as a refrigerator mother.

Making Sense

hodsock 007Of course I know, now, that is nonsense. I’m no nearer to making sense of Dylan’s autism though.  What difference would it make to know? a colleague asked me this week. Well, the research paper I’ve been discussing in this post suggests that conceptualising multiple autisms could help identify different potential interventions for people affected by autism (Miller, 2013). The three autisms that were identified as part of the study, for example, correlated with different levels of expressive language disorder and the timing of developmental delays. As I noted earlier, it is Dylan’s pattern of language and learning disability which I think has turned out to be most significant, not his autism, so this is of particular interest to me. If making sense of the reason for Dylan’s disability can help me to support him more effectively, that could make a difference. While I may no longer focus attention on cause or cure, medical research into autism still has a role to play in supporting Dylan and informing my advocacy on his behalf.

 

 

References:
Elizabeth Barrett (1998) ‘Ear Infection’  in Barrett, Elizabeth (1998) Walking on Tiptoe, Staple First Editions

Finale Doshi-Velez, Yaorong Ge and Isaac Kohane (2013) ‘Comorbidity Clusters in Autism Spectrum Disorders: An Electronic Health Record Time-Series Analysis’. Pediatrics
http://pediatrics.aappublications.org/content/early/2013/12/03/peds.2013-0819.abstract

Jake Miller, ‘Investigating clinical histories shows surprising evidence of multiple, distinct ‘autisms’. December 19th 2013.
http://hms.harvard.edu/news/autism-clusters-12-19-13?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=12.24.daily%20(1)

Memory And Autism: emotion and the senses

Retrieving Memories

What’s your earliest memory? Someone I know claims she can remember being in a pram pushed by her mother, but in the earliest memory I have I am three.

I’m at the wedding of a distant relative in an unfamiliar town. I’m not used to social gatherings and I am under the table, trying to make myself invisible. My younger brother is in a Moses basket on the floor next to me and I’m playing with the fringes of his pastel-check blanket. It smells of milk.  I’m winding the woollen tassels round and round my fingers. It is dark under the table and the sounds from the hall are muffled. There are lots of uncles and aunts and cousins I don’t know and whose voices I can’t understand.

I sometimes wonder why this is my earliest memory.  Why did this unfamiliar event stay in my head rather than the ordinary days I was living? Is it because it was different that I remembered it?  There is no photograph of me under the table nor any photographic record of the occasion in my immediate family, so I can’t have based my memory on a visual prompt. This view I have from under the tablecloth of a bride sitting at a trestle table at the head of the room puzzles me.

*

I’ve no idea what Dylan’s earliest memory is.  I sometimes ponder Dylan’s dream life too, imagining that while he sleeps a jumble of real life and Disney fantasy might play in his head. I use the words ‘dream’ and ‘memory’ with Dylan sometimes, although I doubt they’re meaningful to him. Some mornings when I wake him I ask:  Did you dream Dylan? Did you see pictures in the night?  And when we’re revisiting places or I’m trying to recall a sequence for him I will prompt: Do you remember Dylan?  Do you have a memory of this?  What is in question here is not whether Dylan has dreams or memories, which he undoubtedly does.  Based on what he has shown me, I’d say Dylan’s memory goes a long way back in time.

In 1996, when Dylan was two, we visited Pont-Aven in Brittany during a family holiday. We went to the art gallery in the town and saw a Schuffenecker exhibition from which I bought  a poster. When Dylan was nine years old we visited the town again. I can be precise about timings because the two posters which record these visits have dates on them. On this later visit, Dylan led us confidently and without error back to the art gallery and searched it until he found the original Schuffenecker of our print. That day, there was a Gauguin exhibition at the gallery and, again, we bought a print. After we left the gallery, Dylan took us to a specialist biscuit shop where we had chosen a gift for his Gran seven years previously.

I’m not surprised that Dylan should remember a painting and a tin of biscuits  (both are things he loves) but I am impressed that this involved him remembering something which happened when he was two years old. Later, I was to realise that Dylan’s memories might go even further back, to babyhood.  The following poem (published in my collection Walking on Tiptoe and Other Poems) describes a moment I had to pinch myself to believe.

Clown –

The first thing I bought (waiting)
suspended from a stripy
papier maché balloon.

I hung it above his cot
and in that first year
would act a little game
as I settled him down at dusk
or greeted him in first light –
bending (not quite enough)
I’d catch clown, make him tremble,
then pull a crosspatch face:  Naughty clown!
You bumped me on the head.

~

At the end of that first year
my son turned silent, caught in a world
without play or make-believe.
Clearing out baby things years later
I strung it up anyway –
hung it in his nearly-teenage room
of toddler videos and Thomas the Tank.
He raised his sloppy point, gestured
at my head and (not remembering)
I looked behind me, perplexed.
Then he stood up, pushed me
into the papier maché clown –
bump bump bump on the side
of your head, mummy –
and laughed me straight in the eye.

I sat down on his bed. Naughty clown
I whispered. You bumped me on the head.
You naughty clown to make me cry –
to raise my perfect baby from the dead.

Memory and Emotion

A report in the BBC Radio 4 programme All in the Mind suggested that people who have remarkable memories may be making  emotional connections with the material (18th December 2013). Discussing the research on which the report was based, Christian Jarrett – who also  noted a high incidence of false memory among the research sample –  emphasised that  ’emotional connection’ is still only a hypothesis. Emotional  connection could explain why Dylan remembered the geography of Pont-Aven; on our return visit he was surely motivated by having previously enjoyed the gallery.

Scientists don’t really know why some people demonstrate remarkable memories, though, and aspects of this research surprise me.  I had always assumed that people who demonstrate phenomenal memories  – those who enter quiz shows or perform feats of extraordinary recall –  do so by removing  information from its social context, rather than by emphasising this.  Autism has frequently been connected with this sort of memory. It’s movies like Rainman and reports of autistic people reproducing fantastic details from memory (such as Stephen Wiltshire’s architectural drawings) which are at the root of this. I’ve met autistic individuals in my own community who demonstrate this facility: the boy who had committed the A-Z of my city to memory and could tell me which page number I lived on if I told him my postcode; the young man who had learned the car registration plates of all the regular users of the car park.

While autistic people may be reputed to be good at remembering this sort of abstract information, they have been thought to struggle with emotional intelligence and especially empathy.  This, on the face of it, might challenge a link between memory and emotion. But what if the hypothesis is right? Could the boy have learned a car park of registration numbers because of a strong emotional connection? Assuming it was a deep interest in transport that motivated him to memorise the plates, then Yes.  Equally, buildings  or roads or dates could be committed to memory if you cared enough about them.  Although the research linking memory and emotion wasn’t explicitly focused on the autistic mind, it may add weight to the suggestion increasingly being made that autistic people experience excessive emotional connection rather than any deficit.

Memory Retrieval

Let’s assume, for a moment, that remembering something involves making an emotional connection with it – and let’s also hypothesise that being autistic involves excessive emotional connectivity.  That might be quite an uncomfortable place to live: it could mean that you remember an awful lot. Actually, I am persuaded by this possibility. I have a suspicion that Dylan remembers and stores everything. My hunch, however, relates to Dylan’s ability to retain and store memories, rather than to retrieve them. My hazard is that it is the retrieval of memory which is challenging for Dylan, rather than memory itself. Dylan’s limited communication probably doesn’t help (for retrieval mechanisms are usually linguistic) but I don’t think this is the root of the issue.  A key difference between myself and Dylan seems to be that he is better at storing and retaining stuff than I am, and I am better at retrieving it (perhaps because I’ve less stuff to sort through).

Much of our education system – certainly that part of it which leads to public examination – is based on the retention and appropriate retrieval of information. One of the challenges for all learners, not just those who are autistic, is retrieving and applying information appropriately to new situations. Part of supporting students to learn therefore involves helping them to remember information and to retrieve and apply it when required. I point out to my students that mnemonics like Richard of York Gained Battles in Vain (for the colours of the rainbow) and Rhythm Has Your Two Hips Moving (for the spelling of rhythm)  are specifically designed to help children to retrieve information more easily.  Mnemonics (the etymology relates to the River of Mnemosyne, representing remembrance in the underworld)  can be remarkably effective. What mnemonics, and other retrieval methods, offer us is a way of organising abstract information (like a sequence of letters, numbers or colours) into a narrative. Narratives are easier for us to remember because they are social stories which connect with our experience of being human. Perhaps this is what is at the heart of the research I referred to earlier: not ’emotion’ exactly, but our use of social narratives, freighted with emotion, to recall information?

Memory and the Senses

But social narratives aren’t supposed to carry much weight if you’re autistic; Dylan isn’t interested in shared experience. What is it, then, that helps him to remember so deeply? Perhaps there is a clue to be found in the three year old girl under the table at that wedding. If I read through the account of my earliest memory what I notice most is the sense data: the quality of the light, the sound of the room, the feel of the wool in my fingers, the smell of my brother’s milky basket.  Sense data is incredibly powerful; it is at the heart of the greatest narrative of memory ever written, Proust’s Remembrance of Things Past, in which the taste of a madeleine triggers the recall of boyhood memories.  http://www.authorama.com/remembrance-of-things-past-3.html.

When encouraging my Life Writing in Education students to access their deep memories of schooling  I use an extract from Proust. Then, in order to engage their senses, I pass round madeleines for them to taste and  I set up a range of sensory-based activities such as walking blindfold round the classroom. These exercises are designed to help students to think themselves back into their childhood selves and reflect on their role as educational professionals emotionally not just cognitively. To unlock these  memories – in order for students to retrieve them – they need to use their senses. Perhaps rather than emotion or social narrative, it is Dylan’s heightened senses which allow him to commit so much information to his deep memory.

While developing this post I came across an article in Psychology Today by Lynne Soraya, a woman living with Asperger’s Syndrome, which focuses on early memory and autism. Soraya suggests that autistic people have strong early memories and, as I argue here in relation to Dylan, that the senses may play a role in this. There’s a link to the article here:  http://www.psychologytoday.com/blog/aspergers-diary/201312/early-memory-and-autism

Thinking about memory while writing this post has helped me to imagine Dylan overloaded with a jumble of memories  laying siege to his senses and taking up processing room. But it has also made me wonder if perhaps we non-autistics manage the world because, with our duller senses, our  tendency is not to remember, but to forget.

Reference:

Barrett, Elizabeth (2007) ‘Clown’ in Walking on Tiptoe and Other Poems, Bluechrome Press

Teaching My Autistic Son To Laugh: a woman’s gift

bathshebaAt the conclusion of Thomas Hardy’s novel ‘Far From The Madding Crowd‘ tragic heroine Bathsheba Everdene marries Gabriel Oak, the man she had rejected at the opening of the novel.  Although Oak finds his bride ‘remarkably like the girl’ he had fallen in love with years before, their marriage cannot erase the toll which tragedy has taken. Bathsheba has learned the value of love through suffering; the result, we are told, is that she is no longer able to laugh. This detail stuck in my head when I first read the novel in 1986.  Part of me was seduced by the idea of being a tragic heroine, smiling enigmatically in the corner of a room, beyond the blessing of laughter.

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But it was already too late: the year before,  I had met a woman who taught me how to laugh. This woman came into my life at a time when it seemed bleak; I was in hospital due to problems with a pregnancy which ended eventually with the birth of a stillborn daughter.  There were moments when the grief seemed so unbearable I wasn’t sure I would recover. Much of that time is a blur now, but I remember my new friend’s daily visits to the hospital during those long months and how these invariably ended in helpless, side-creasing laughter. Why? What did we talk about? I don’t know. We didn’t tell each other jokes, that’s for sure. But a nurse would often put her head around the door of my side-ward room: ‘what’s going on in here? Can you two keep it down please?’ My friend was hilarious: her quirky perspectives, directness, delivery and hilarious expressions cracked me up.

We laughed together through that time and for years afterwards, frequently hysterical with joy. That’s not to say, of course, that we only laughed: she was with me in the darkest moments too, holding everything together and bringing acceptance to places which seemed to make no sense. I suppose I wasn’t surprised when, eventually, she decided to become a nun. Selfishly I missed her and wanted her back: I knew that her life had blessed mine, not least with her gift of laughter and the lesson that around every shadow there is light.

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Last week at my French class I was snorting with laughter at something that had amused me – some error I’d made or a nonsense I’d spotted – when the woman who sits next to me (laughing equally hard) said: ‘You’re so funny. You’re just so funny’. Many years after she gave me the gift of laughter, I hope my friend would be pleased to know I still guffaw through my office door and collapse in fits of giggles in the street. There is something deliciously unguarded and out of control about laughter: at its height it can leave me gasping for breath or clutching the stitch in my side. Anyone who has ever succumbed to it will know the sheer abandon of laughter.

Perhaps it is this state of temporary incapacity which connects laughter to the world of the child. Although I say that I learned to laugh in 1985, what I probably mean is that I learned to laugh again in 1985. We can lose the capacity for joy as we age, especially when faced with grief and loss,  a process which Hardy illustrates through Bathsheba Everdene.  The gift from my friend – at a time in my life when I was the same age as the Hardy heroine – was perhaps to put me back in touch with the child who had spent her school days laughing.

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I don’t know whether I’d call Dylan’s early laughter an expression of joy. I certainly didn’t think of it that way. The first time I heard him laugh Dylan was three years old. It was late at night and my husband and I were exhausted by another evening of battling to get Dylan to sleep. The stress levels in the house were sky high: not just mine and my husband’s, I now realise, but Dylan’s too. Looking back we were doing everything wrong but it was all we knew to do at the time.

last laughI remember we had finally collapsed on the sofa. Upstairs, the house was quiet:  Dylan, we thought, was sleeping at last. We were whispering to each other, afraid to break the silence. But then we heard the strangest sound: it started as a low chortle then grew louder and more sustained. My husband and I looked at each other puzzled. I stood up and went to listen at the bottom of the stairs. Dylan was laughing!  I remember how at first I was reassured and almost relieved at this. If Dylan was laughing, then perhaps everything was alright? How could he be autistic if he was laughing like that? Perhaps he was laughing at us for even thinking it?

But I soon realised it was nothing of the sort; the laughter was a sign that Dylan was stressed. I came to dread Dylan’s late night laughter, especially if I were alone with him. There was something spooky and unsettling about it. I remember the reaction of a friend, visiting from the US: ‘I hate to say this Liz but it sounds like he’s kind of possessed’, she said. I shuddered to hear this but knew what my friend meant: there was something maniacal and other-worldly about Dylan’s laughter.

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sophie scottI thought about Dylan’s spooky laughter the other day while listening to a programme on BBC Radio Four.  ‘The Life Scientific’ featured Sophie Scott,  stand-up comedian and Professor of Cognitive Neuroscience at University College London. Laughter, Scott noted, is important because it is a universal language understood by everyone. It is, furthermore, a genuinely social language; neurological research shows our brains are wired to respond to and join in with laughter. We usually laugh with people we know, Scott explained; as well as signalling amusement, it communicates affiliation, agreement and affection. When we laugh with someone we are showing them that we like them and that we belong to the same group. Laughter, Scott argues, is probably the most important social communication tool we have; it is the ‘belongingness’ of laughter which makes it a human rather than primate behaviour.  I realised, as I listened, that what had spooked me about Dylan’s laughter was the fact it wasn’t social; Dylan was laughing by himself and, removed from any community or shared affection, I couldn’t understand it or join in.

All the time I was listening to the programme (which I’d happened across) I was anticipating a reference to autism; so much of what Scott had to say explained the discomfort I had felt at Dylan’s late night laughter. Surely, I thought to myself, she will make reference to people who can’t join in with laughter because they do not pick up the social context? Scott didn’t reference autism but it’s interesting to listen to the programme with autism in mind. You can hear the full programme here:  http://www.bbc.co.uk/programmes/b03bdpl5

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happy and sadRecently I have been teaching Dylan to laugh. I started doing the actions for some verbs because my exaggerated behaviours captured his attention:  sleeping (fake snoring with a sudden ‘wake up’), sneezing (like Sneezy in Snow White), crying (more on this in a later post) and laughing all proved popular with Dylan.  In time it became a game between us with Dylan requesting a particular action, sometimes by showing me what he wanted me to do. Crying and laughing have a remarkably similar vocalisation ( a ha ha ha ha ha) accompanied by similarly heaving shoulders, but I try to vary my facial expression. This, I think, is a good game: Dylan enjoys the caricature and it develops skills of imitation (of the action) and verbalisation (of a word) as well as supporting his socialisation (understanding the behaviour).

We have done a lot of patient work with these verbs. Initially this involved getting Dylan to recognise when someone is, for example, laughing (in real life or on a TV screen) then moving on to naming the behaviour and finally to copying it. I don’t think I had considered that this process might lead to Dylan spontaneously initiating laughter, so imagine my joy when during a cinema visit Dylan laughed, spontaneously and appropriately!  Perhaps because of the repeated modelling of the process that I’ve done, Dylan named his behaviour for me immediately afterwards:  ‘Dee-an la-ing’ he said to me, ‘Dee-an la-ing’.  As we walked back to the car Dylan told me several times, with obvious pleasure, that we had been laughing in the cinema. This seemed to be a break through moment for Dylan.

flushed awaySince then he has laughed again in the cinema (and at other times) but it is the moment in ‘Flushed Away’ he likes me to talk to him about. The particular scene involves a rat (or ‘mouse’ as Dylan calls it) being flushed down a toilet – something Dylan finds hilarious. ‘The mouse went down the toilet. Mummy and Dylan were laughing’ is a phrase I say often and on demand. What I hope I’m reinforcing through this is the shared and social nature of laughter; if Dylan names laughter, or wants me to recount that we laughed together at something, then he is developing a sense of something that he does as part of a community, not alone in his room because he is stressed (though he still does that too). I am inordinately pleased with Dylan’s developing laughter.  When I wrote an earlier blog post (‘I Said No’: Re-thinking Dylan’s speech) I included in the transcript of Dylan’s speech a reference to him laughing (at the Disney film ‘Planes’). I was aware that this wasn’t, strictly speaking, ‘speech’, but I left it in because to me it represents something as valuable as speech.  As Sophie Scott says, laughter is probably the most important social communication tool there is.

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While I am delighted that Dylan is learning social laughter I also now enjoy hearing him have fits of giggles on his own. I wouldn’t want to deny him this solitary use of laughter which seems to be functional and a release from stress. We could all take a lesson from Dylan there I think: laughter’s certainly less harmful than most other symptoms of (or drugs for) stress-related conditions.  But as well as this I now get to hear Dylan’s bursts of child-like joy, which delight me. I suppose this post has been reflecting on joy in the face of adversity –  that even amidst loss, grief and difficulty there can be laughter.  I hope that through this post you not only hear the sound of me and Dylan laughing, but the peal of laughter from a house of nuns somewhere in England.