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).

11 thoughts on “That Fishy Feeling: autism and empathy

  1. This was a fascinating read. It conjured up memories of the death of my first goldfish. I was about 4, and my mother, fearing I would be traumatized, had a solemn talk with me about death, and then we ceremoniously said farewell to the deceased over the toilet bowl. The next day I discovered fish #2 belly-up in the fishbowl, and I ran to my mom asking with glee whether we would be able to “flush this one too!” So much for trauma. I think I have become someone more empathetic with age! 🙂

    My eldest had fish for a long time, and the dogwood tree in our old yard is fertilized by a small cemetery. One fish mysteriously went missing from the tank, and its remains were found, days later, in a plastic tub of tank cleaning supplies that we kept under the aquarium stand. When my daughter was going through a dark time in her teams, she appreciated the irony of having owned a suicidal fish.

    Your “aha” moment with Dylan and the fish counter reminded me of all the times when I have suddenly “seen” something my children were trying to communicate. I associate that moment with a strange mix of elation at having “got it” and guilt at not having grasped it sooner.

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  2. I worked in primary education all my life and began to be aware of autistic spectrum behaviours in the late 70’s but wasn’t able to conceptualise what I was observing until I met an enlightened child psychologist in the early 90’s. Thinking back now over 40 years I believe that many of the behaviours which teachers, including myself, found problematic, were caused by stress.

    I know this is not central to what you are writing but I was interested in your first paragraphs., I wonder what Diarmuid MacCulloch thinks a grammar and a syntax are? A grammar is essentially an understood set of rules – understood in the sense that the users do know how to operate within the rules in order to get their needs met. The rules do not have to be tabulated. So the monks would have had a grammar which showed in their using the appropriate sign in the appropriate context. A syntax in spoken language is a word order. I would have thought there would be a syntax where any sequence of signs were used, same as there is a syntax in BSL. What is interesting about syntax is that it can determine meaning or the meaning of an utterance may be understood even if the syntax is apparently wrong. It seems to me that the monks were using what Basil Bernstein called a restricted code language.

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    • Hi Tom – thanks for reading and your comment. I agree with you about stress – Dylan doesn’t have many ‘behaviours’ but those he does have can emerge, I think, from stress (which in turn is often caused by my not always understanding what he wants or feels). I’m away from home at the moment so don’t have MacCulloch with me. He’s a theologian rather than a linguist so his comments about communication at Cluny were not his central focus. I’m not sure whether the monks’ use of signs could be described with reference to Bernstein’s elaborated/restricted code. MacCulloch doesn’t give a great deal of detail.

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  3. The word empathy is beginning to perplex me these days. Does empathy belong in with the theory of mind, saying there is a being with feelings that may or may not be different from mine, a sort of intellectual empathy awareness or is empathy feeling someone else’s pain or joy as if it is your own and not being able to distinguish where “I’ end and ‘The other” starts? Or is it some sort of mixture of the two. I have never thought of autistic people as not having empathy for feelings and emotions but maybe some do and some don’t? I was going to say avoid those Chinese restaurants with lobster tanks, you need a special Makaton sign for those outside. Alive, waiting to die… don’t come in here if you don’t want to think about that while you eat your noodles… Lovely blog post, wish my comments were more articulate but just want to leave them so that you know I read !

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    • Hi Joanna – nice to hear from you, as ever. Yes empathy puzzles me too. It’s probably another of those things we all have different understandings of 🙂 I think it has been caught up with TOM. I suppose if you claim that autistic people lack TOM, and don’t understand that other people have different thoughts in their head, then it might follow that your ability to empathise with those other people would be impaired too. I don’t put the two things together for Dylan necessarily. I think that Dylan has TOM issues. He thinks that I know what is in his head and he thinks I can see something he can even if I can’t. I don’t think he realises that I know different things to him. That’s just a guess. However, I think he cares about me and empathises if I’m in pain or upset, and understands that my pain can be separate from his experience. And I think he cares about his Disney characters and doesn’t like the thought that they are hurting or troubled – hence me thinking his concern for dead fish is empathy (he loves nemo and he cares about the fish and doesn’t want them to hurt). Whether or not he realises that the fish don’t know the same things as he does – well that’s another matter. Yes it is perplexing – the word, how we use it. Ha ha yes the tanks might be challenging – happily neither of us like Chinese food 🙂

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  4. I’ve read this three times now, and each time with greater reward. It’s brilliant. First and most of all as a tale of exemplary love. I read your story and had to ask myself when have I ever been so attentive to the persons that I claim to have loved. How carefully have I really listened to them, on their terms, without rushing to interpret their words and actions? Yes, in the end, more so perhaps in your son’s case but I think a part of most interactions, one must end with an act of interpretation. “I don’t always understand what it is he is trying to say,” you write. But it helps if one has first paid close attention.

    As you intimate in your story, interpretation is a matter of context. I would imagine that salt as a gesture on its own wasn’t of much use in the monastery but acquired meaning only in context. I can picture the body language and grimaces and gestures that accompanied the sign for salt in monasteries to communicate “Pass the salt” or “The beans need salt.” or “salt conceals a multitude of culinary sins,”–all probable items of refectory conversation, no doubt.

    I was intrigued by how the double motif of dead and live fish that you introduce with the conceit of the monastic gestural communication system is echoed later in the dead and live fish that appear on the fish counter and aquariums and fishbowls. I am still wondering, though, why monks would need to distinguish between dead and living fish. Unless they lived by a lake. 🙂

    Thank you again for this wonderful story. S./

    P.S. Your text also made me recall the few times I ever gagged on food. With one exception involving an unpleasant medical procedure, they all involved mayonnaise. There’s a story in the exception and the rule alike, and thanks to your post, I think I will explore both.

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    • Hi S – what a lovely comment to leave for me – thank you. You are very generous. I like the way you respond to my account of caring for Dylan through the lens of love. However, I’ve not been exemplary about listening and observing in my other relationships 😦 Perhaps language allows us to stop paying attention and throw up smokescreens? How interesting it might be to spend 48 hours in complete silence with loved ones to see whether it encouraged us to pay closer attention to how they really felt. I’d be rubbish at such an experiment I know, for all my patience with Dylan. I wonder if members of a silent monastic community develop depths of intimacy denied to the rest of us? Anticipating the need for salt rather than having to ask to pass it, for example. I look forward to reading your exception and rule one day – very lovely to hear from you, E

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  5. Pingback: Capacity And Voice: From Silent Subject To Co-Author | Living with Autism

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