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

That Fishy Feeling: autism and empathy

MonksInSouthChoirI like to read books about living silently because they help me to reflect on how Dylan might experience the world. From the book I am reading at the moment I have discovered that in 11th century France the monks at Cluny developed simple hand signs to facilitate silent communication. The signs are described as a system rather than a language due to the lack of grammar and syntax. However  they: ‘enabled work and life to proceed efficiently without speech’ (McCulloch, 2013, p. 97). Signing was apparently confined to three areas of the monastery – the kitchen, the library and the liturgy – so the Cluniac signs reflected the needs of these settings. There was:

…a rich array of words for different types of fish, but no sign for meat, which would not have figured in the monastic diet. (2013, p. 98)

I enjoy the irony that today I’m using hand signs to facilitate Dylan’s speech (I am using makaton, a language programme aimed at people with learning disabilities). Wanting to build the use of signs into our life in an authentic way, one of the first words I looked up in my vocabulary book was Pub. I flicked through the pages to where I thought it would be. No sign. I turned to the index. No entry. Sign systems and language programmes, today as in the 11th century, are functional and develop in response to the needs of the community; as makaton is educational and aimed at children, there is no pub. There is, however, a sign for fish in the makaton book. In fact there are two signs for fish: dead and alive. While this is hardly the array used by the monks at Cluny it was, I thought to myself, more than Dylan and I would need.

One, Two…

We are vegetarian; Dylan from birth and me since my early teens. At a time when it was unusual not to eat fish or meat (at least in the community where I was raised) it required some determination to resist the pressure (and ridicule) of family and friends. My arguments at the time were largely moral and economic but I had a strategic reason too: I hated fish.

London Lions 040In the 1970s, at the school I attended, you did not get a choice of school dinner; there was a set meal and that is what you had. On Fridays it was fish. Not only was there no alternative, the amount you ate was monitored; if you wanted to leave any food you had to put up your hand and ask. A dinner lady would make her way across the dining room to you, inspect what was left on your plate, and decide whether or not you were allowed to stop eating. We tried everything we could to get rid of what we didn’t like: hidden under a leaf; cut to appear less than it was; re-distributed around the table so the request to leave it could be shared. The dinner ladies’ eagle eyes never missed a trick: what’s that under your chips? You can leave those but eat the fish underneath please.

Putting fish in my mouth made me feel sick; I gagged at each swallow. So I developed ever more desperate strategies. On my knee. Up my sleeves. In my pockets. Once, realising I wasn’t dressed in clothes with hiding places, I came up with what I thought was genius. I had worked my slow way through half the piece of fish I had been given. There was too much still on my plate to be sanctioned as leftovers. When the backs of the dinner ladies were turned, I tore some hair from my head and positioned it on what remained of my fish. My hand went up: please can I leave this fish, it has hair in it? The dinner lady ran her eyes over my plate and sniffed. I’ll take that off you. You’d better go and get another one. Be quick now; there isn’t much time before the bell. Eating 1.5 fishes that day went into the log of horrible things that had happened to me. It wasn’t long after that I announced I had become vegetarian.

Three, Four…

Apparently we have a penchant for the foods that our mothers ate during pregnancy. Our parents also pass their own food preferences to us through the meals they prepare in the home. I don’t remember being given fish to eat as a child and perhaps it was its unfamiliarity when I encountered it at school which caused me to resist. It could equally, however, have been dad’s tropical fish.

London Lions 016I’ve never been sure whether fish qualify as pets but I can imagine not wanting to eat something which I associated with dad’s fish. My mother didn’t consider them pets however; she banished the tank from the house. I remember hanging around the garage, where it was kept, mesmerised by the sound of the pump and the blue light. Once, dad removed a pregnant guppy from the tank to protect the babies from being eaten by other fish when they were born. He put the guppy in a Pyrex bowl in the airing cupboard where he said it would be safe and warm. The airing cupboard was in my bedroom so this was our secret; my job was to move it if mum showed any sign of opening the cupboard door. One morning I found the pregnant guppy had flipped out of the bowl and was dead on one of mum’s clean towels. I was inconsolable.

Keeping pets, we are told, not only helps young children to develop skills associated with small animal care but develops empathy. I have known parents who don’t care for animals but who keep them for the sake of their child’s social and emotional development. One such friend argues that the only reason for a pet is to teach a child about death . Perhaps the pregnant guppy had a purpose after all.

Five…

London Lions 020Having an autistic child in the family can have implications for keeping pets. Some parents of autistic children have written movingly about the positive impact of animals on their child’s development while others report animal-related fears and anxieties. Because Dylan falls into the latter of these groups I have been careful about introducing pets to the home. In order to give my daughter the experience of caring for something, however, we bought her some fish. My daughter used to collect the metal figures which museums sell. She also used to enjoy (and had a talent for) hand painting them. When we bought my daughter some fish, Dylan decided that these figures had to be thrown into the tank with Aristotle and Archimedes.

Dylan has always taken pleasure from throwing things into water; I think he enjoys the light and sound and watching the water move around an object (I’ve written about this here). For many years Dylan would throw stones and pebbles into the toilet; dropping metal figures into a fish tank therefore didn’t seem so strange to me. Not surprisingly, however, my daughter became upset every time she had to fish one of her figures out of the tank. Understandably, she was even more upset when she went in her room one day to find Archimedes was dead.

My daughter claimed that the toxicity of paint leaching into the water from her metal figures had killed her fish. In an age of lead-free paint I was sceptical but couldn’t rule out the possibility that Archimedes had been hit by a Viking. It can’t have been an easy life for a goldfish, being periodically bombarded by fistfuls of soldiers. Archimedes was buried under the Cricket-Bat Willow tree, and cyclamens planted out to mark his grave. This was my daughter’s first dead pet: job done I thought to myself.

Once I Caught A Fish Alive…

London Lions 034Later, I remembered that there had been an incident with a goldfish earlier in Dylan’s life. When he was four Dylan went to a local mainstream nursery for a couple of terms. He was part of an integrated resource but transitioned through the main nursery to specialised activities. The nursery had a pet goldfish which attracted Dylan’s attention. Dylan’s aim, the whole time he attended that nursery, was to remove the lid of the tank so he could splash, throw or catch the goldfish.

One day the class goldfish was missing. Dylan’s teacher, noticing Dylan was holding his face oddly, discovered the goldfish carefully concealed in his mouth. I say ‘carefully’ because it was alive; Dylan was not, it seemed, intending to swallow. At the time I found the incident vaguely amusing but also horribly demoralising. How could Dylan do that to the class pet? Didn’t he care about the fish or the feelings of others? Was this the autistic lack of empathy I had read about?

Six, Seven, Eight, Nine Ten…

Inverness 2014 052Over time I came to believe that Dylan had an excess rather than a deficit of empathy (I have written about this here). I cannot know for sure what Dylan feels of course; the observation is based on my sense-making of incidents, events and moments in his life. Living with autism is a bit like being a detective. I spend my time hunting for clues. I assemble pieces of information which don’t fit together but I keep hold of them in case I can use them later. I have bits of metaphorical string and paper stuffed in drawers all over. Although I try not to throw anything out I sometimes forget about things or a drawer gets stuck. Sometimes, though, a new experience acts like Open Sesame and things come together with new meaning under the sudden light. And something happened recently to make me re-think Dylan’s interest in fish and affirm my belief in his capacity for empathy.

Last month, during a holiday, Dylan and I were in Mallaig. At the harbour we passed a fish warehouse and I suggested to Dylan that we stop and watch fish being unloaded and packed. As we approached, however, I felt Dylan stiffen next to me; he strained hard against my steering arm, pulling me away and back towards the boats. I thought Dylan might be temporarily changing route to avoid a dog but he persisted. The suddenly I recognised what was happening; Dylan’s eyes were closed, his head turned to one side, his body stiff. Dylan’s reaction to the fish warehouse in Mallaig was identical to one I had been battling with for years in another location: the supermarket.

Then I Let It Go Again

London Lions 046Dylan has always struggled with supermarkets. When he was young I quite often had to be rescued from shops where Dylan had gone into meltdown. When I say supermarkets I don’t mean all of them; one of the things which has puzzled me over the years is why some are a trigger and others are fine. Because Dylan’s behaviour wasn’t consistent I persisted with supermarket shopping but at some point gave up and shopped alone or online instead.

In the last few years I’ve reintroduced supermarket shopping because shopping for food is a life skill which Dylan needs. While it is not something we do often, every four to six weeks Dylan and I go to a supermarket. Mostly this has gone well but in two of the five supermarkets we use Dylan gets distressed – not to the extent he did when he was younger but enough sometimes for us to change plan or abandon. Dylan’s physical reaction at these times is identical to the response I got to the fish warehouse.

In Mallaig I had found the missing piece to the supermarket puzzle: the two supermarkets where Dylan gets distressed have fish counters (the others don’t). While I don’t use the fish counters, in one of the supermarkets the fresh grapefruit juice is adjacent to it and in the other supermarket the fish counter is at the end of the fresh pasta aisle. Dylan has no interest in grapefruit juice so refuses to even accompany me down the aisle in that particular supermarket, requiring me to sprint and grab the juice while looking over my shoulder, not taking my eyes from Dylan. In the other supermarket Dylan’s desire for pasta is enough to get him past the fish counter, but in obvious distress. Looking back at supermarkets I have been rescued from, I am pretty sure there was always a fish counter.

London Lions 032So I pieced this together in Mallaig in the sudden light. I thought about how Dylan loves living fish, recalling how on a trip to London Zoo he had spent ages in the Aquarium. I’m sure that part of the attraction for Dylan that day was finding Nemo; I’ve argued elsewhere that Disney films have played a major part in his development. Dylan is especially drawn to underwater sequences with fishy, swimmy things; he’d hate it, I’m sure, if the fish he loves stopped swimming.

I can see now that a fish counter would be pretty challenging for Dylan. I am not including a photograph of one here because this is a blog for Dylan and he likes to help choose and look at the pictures. I am going to ask you, therefore, to try and visualise a fishmonger’s or supermarket fish counter. If you enjoy eating fish and the image is a positive one for you, try to consider why it might be distressing for Dylan. I don’t know whether or not Dylan understands the concept of death, but perhaps he can smell it. I wonder if perhaps the eyes of the fish would trouble him. Mostly, though, I imagine that Dylan would be upset that the fish – which he loves so much in Disney films and picture books – are not swimming. Dylan is sad, I suspect, because the fish do not seem happy. This, surely, is empathy?

It has taken me a long time to understand something that Dylan has been trying to tell me for years. I know that Dylan communicates through his behaviour but I don’t always understand what it is he is trying to say. Having two makaton signs for fish could, I now realise, be useful after all.

London Lions 029

References:

MacCulloch, D. (2013) Silence: A Christian History. Allen Lane
Makaton Core Vocabulary: Symbols Pocket Book 1
Makaton Core Vocabulary: Signs Pocket Book 1

 

Images:

Monks in south choir at Cluny wait silently,  http://www.aedificium. org
Fishy photographs taken  by me at London Zoo Aquarium (Easter 2013) and in Mallaig (May 2014).

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

Why Doesn’t My Autistic Son Cry Tears?

tears 002I have a memory of my mum exclaiming one day when Dylan was a baby:  ” He’s crying real tears!  Look – real tears!”  I wasn’t sure why mum was so pleased; for me the tears were only a cause for concern. I busied myself adjusting blankets and fussing around, trying to stop the crying.

I wonder whether that memory has stayed with me because of the subsequent absence of tears? Dylan doesn’t cry tears now and I don’t have any memories of him crying tears as he was growing up. I don’t know when he stopped crying; for all I know the tears which my mum saw when Dylan was a baby are the only ones he ever cried.

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http://ed.ted.com/lessons/why-do-we-cry-the-three-types-of-tears-alex-gendler

The link above is to a cute animation which explains the three different types of tears which we cry (basal, reflex and emotional). I’m puzzled as to why I never see Dylan shedding basal or reflex tears, which have a physiological purpose and which we don’t control,  but for purposes of this post my particular interest is in emotional tears.  Not that we are always in control of emotional tears:

            I struggled to hold back the tears…

            I felt myself welling up…

            Then the flood gates burst…

            I fought back the tears…

While there are things we can do to avoid it, some tears fall no matter how hard we try.

            It’s OK let it out…

            That’s right – have a good cry…

And once ambushed by tears they can be hard to stop:

            Come on now, dry your eyes.

tears10 The animated film makes some observations about the social context of emotional tears which may be relevant to autism. There is a tearing spectrum in the general population which ranges from people who cry easily through to those who claim that they never or rarely cry. Some people suggest that the propensity to cry is linked to variables such as age and gender: boys learn early in life that it isn’t ‘masculine’ to cry tears and so tend to suppress them in public. Gender and age are not plausible explanations for Dylan, however, who lives his life without reference to stereotypes about what is or is not appropriate behaviour (I’ve written about this here and here).

My observation about Dylan not shedding tears relates not just to his ‘public face’ but also to his private life.  One of the benefits of autism is that Dylan doesn’t have two faces:  there is no pretence or deceit about who he is. So although Dylan doesn’t produce ‘real tears’, he isn’t capable of crying ‘crocodile tears’ either. Crocodile tears, according to the Oxford English Dictionary, are ‘tears or expressions of sorrow that are insincere’. The expression, apparently, comes from folk lore that crocodiles weep in order to lure their prey, or that they cry for the victims they are eating. A Wikipedia entry notes that:  ‘while crocodiles can and do generate tears, they do not actually cry’.  This distinction between the physical act of shedding tears and the behaviour we understand as ‘crying’ emphasises the role of emotion. Thus the Cambridge Online Dictionary defines crying as ‘to produce tears as the result of a strong emotion, such as unhappiness or pain’.

tears9Am I suggesting that Dylan doesn’t feel pain or unhappiness acutely enough to shed tears? Absolutely not.  Dylan’s emotional life appears to me as intense as anyone’s I have known; although he sometimes seems confused by his feelings, he experiences them passionately. For some years I have been convinced that ’empathy’ – something that has been thought to be impaired or limited by autism – is a quality which Dylan has in abundance (I have written more about this here). I would go so far as to say Dylan sometimes over-empathises with others. Certainly he is capable of showing concern for those he believes are in distress.

There are parts of Dylan’s favourite films, for example, which he cannot bear to watch: a scene in ‘The Lion King’ when Simba is in the ravine during a wildebeest charge and a scene in ‘Pinocchio’ involving a whale are two cases in point. Dylan has watched these movies hundreds of times: he knows the inevitability of these scenes and that everything turns out alright but none of this matters to Dylan who feels distress and anxiety for the lions and the puppet boy no matter how many times he watches these films. Dylan’s sorrow and feeling for the characters he loves is tangible and real; at these times he runs from the screen and lays on his bed pummelling the mattress and vocalising, his face twisted in tearless agony.

tears7These feelings for somebody else – which seems to me to be a mix of empathy (being able to identify with the character’s suffering) and sympathy (caring about the character’s suffering) – have also been demonstrated by Dylan in relation to real people. On various occasions over the years Dylan’s teachers have reported his concern and care for fellow pupils in his class who have become upset, and Dylan’s obvious distress at their unhappiness.

One of Dylan’s particular anxieties has always been crying babies;  the sound  triggers in Dylan such levels of distress he is prone to sudden flight reaction. As Dylan tries to escape the crying baby, he clamps one of his arms tightly over his head in an attempt to block the sound of crying. ‘Baby crying, baby crying’ he shouts in distress. Recently it occurred to me that if you didn’t know anything about baby behaviour then the sound of one crying might be fairly alarming. Why should Dylan take the sound of a baby crying in his stride, as if it didn’t matter? Perhaps Dylan’s extreme reaction to crying is triggered by his concern that the baby is distressed. So I have started saying to him:  ‘The baby is crying because it wants a drink’  or ‘The baby is OK. Don’t worry. It isn’t hurting.’  This seems to help a little.

Could Dylan have been getting upset all these years because he thinks crying babies are hurting babies?  If so, that might suggest that Dylan feels both empathy and concern. My sense is that Dylan understands crying is something we do when we are distressed and that he cares about the distress of others. I’m not sure, though, why he doesn’t cry tears himself. Perhaps crying tears requires an emotional self-awareness which Dylan currently lacks  (this possibility is discussed in one of the links below). Or perhaps he simply doesn’t like the sensation of salty liquid on his skin.

tears1

Useful Links:

This link is to a post on autism and crying by a blogger who is herself autistic:

http://www.mindretrofit.com/2013/10/19/ 

The blog includes some links to related readings which raise some interesting questions for me in relation to Dylan. One article suggests that emotional tearing is linked to Nerve Growth Factor (NGF), for example, and another stresses the role of the endocrine system in emotional tearing. Research in this area is apparently very limited but I can imagine might be relevant to those with an interest in the biochemistry of autism. A further issue raised is the ‘developmental shift from vocal crying to visual tearing’  which could also be relevant  given ‘developmental delay’ in autistic children. 

Acknowledgement:

Sources of images (other than Dylan) unknown but appreciated.