Is My Autistic Boy My Son?

more son 005I’ve only very recently started referring to Dylan as my son.  For the first 18 years or so of his life I called him ‘my boy’; until the age of around 11 he was ‘my little boy’ and more recently he’s been ‘my big boy’. Of course I understood that for some purposes I needed to use the category ‘son’ – in official documents which asked me to identify our relationship to each other for example – but I preferred not to use the s word if possible.

For me the word ‘son’ describes a socially constructed role. The meaning of the role may vary over time and across cultural groups but in each society there is agreement about what the role involves.  Our understanding of ‘son’ (and other social roles) is reinforced through powerful socialisation agents such as the family, school, religion and the media.  So while nobody has ever explained the role of ‘daughter’ to me, I have developed a pretty clear idea of what this entails in the society and community in which I live.

Fly-on-the-wall TV documentaries which follow events on maternity wards are currently very popular in England and I quite enjoy watching these. I’m frequently struck by the use of the words son and daughter by families and midwives at the moment of delivery:  ‘Congratulations you have a son’ or ‘We’ve got a daughter’.  There’s a voice in my head which counters: ‘No you have a baby boy or girl who may, in time, take on the social role of son or daughter’.

more son 004I may argue that a newborn baby isn’t yet a son or daughter, but would I describe the woman who has just given birth as the child’s mother? Mothering is also, after all, a socially constructed role; there is agreement within society about what it involves (that it is a nurturing and educative role) and about perceived transgressions of the role (such as the abandonment of a child).  As girls are socialised to the role of ‘mother’ long before they have children of their own, there is a sense in which they are prepared for motherhood before the delivery of their children, unlike the newborn baby who has no awareness of the social roles within the society it has been born into.

So what are the implications of this for autism? Given that autism involves a ‘triad of impairments’, one of which is socialisation, autistic children may not always grasp the social meanings of being a son or daughter, or the social role of mother or father.  Does Dylan know that he is my son? I don’t think he would recognise the word (admittedly there is a problem with it sounding like ‘sun’) and I’m fairly sure that he isn’t aware of the implications in terms of his social relationship to me. While these things may be an explicit enough part of society for the majority of us, I would suggest that for someone who is not only autistic but who has a communication and learning disability (‘intellectual disability’ in the US), social roles are not necessarily clear at all.

Autism and Gender

 Sociologists have suggested that the socialisation of children to gender roles begins soon after birth.  When my children were born I was determined that I would intervene in some aspects of this process. While I didn’t want to isolate my children from their peer group or from some established norms, I did aim to challenge gendered responses to childhood and education, particularly for my daughter. Both my children were therefore given gender-neutral toys when they were young, were spoken to in gender-free language, and were encouraged to make choices on the basis of their interests rather than according to beliefs about what was ‘gender-appropriate’.

ice again 002Challenging established practices around gender isn’t easy as I quickly discovered. When my daughter was born she was instantly wrapped in a pink blanket by the nurses. I asked whether it would be possible to find an alternative colour, thinking I may as well start as I meant to go on. The nurses reacted with astonishment but, after attempts to distract me from the request failed, produced a green blanket. They were clearly, however, not comfortable with this; all the other babies in the ward were wrapped in either pink or blue waffle blankets.  By the time someone took this early photograph of my daughter, a nurse had tried to re-establish the pink.

This was the first of many incidents I encountered while bringing my daughter up to be free of what I considered  stereotypes for girls. My ‘little boy’, meanwhile, was growing up marvellously free of any conception of gender whatsoever, quite effortlessly and with absolutely no input from me.  Dylan is now aware of biological sex difference – an awareness which I think developed around the time he started needing to shave – but for many years I don’t think he thought of himself as ‘a boy’ particularly.  Dylan certainly wasn’t aware of the roles which society thinks of as ‘appropriate’ for boys and girls; he would dress in, behave and interact with whatever interested him, regardless of social conventions around gender. For many years, therefore, I thought of Dylan as ‘gender free’; for me this freedom has been one of the celebratory aspects of living with autism.

I remember an incident when Dylan was young, perhaps nine years old. My mum and I had taken the children to York for the day, an ambitious outing by train which had left us all tired and Dylan a little fretful at the end. Visiting York Minster in the late afternoon there were signs that it was becoming too much for Dylan and we decided to go to a tearoom hoping this would re-orientate him.  As sometimes happens, we made the decision five minutes too late; Dylan was already moving into meltdown as we entered the cafe. We happened, that day, to be assigned a magical waitress; a young woman who may or may not have had personal experience of children and/or children with autism. What she had in abundance, though, was an ability to understand and to communicate without language; she noticed Dylan looking at her beads so took these off and gave them to him. The beads were wooden and rough-hewn, threaded on elastic and looped around her wrist. They seemed to calm Dylan like juju beads.

That afternoon tea and cake turned from a potential meltdown into one of the high spots of the day in terms of our sense of well-being. As we left the cafe, heading for the train home, I tipped the waitress and returned her beads. ‘No’ she said: ‘I would like the little man to have these.’   And so she wrapped her beads around Dylan’s wrist and for months afterwards he wore them, and sometimes I did, and we talked about the York waitress until the elastic snapped and we lost them.

Disney Princesses

pink and  blueAs well as letting Dylan wear beads I have, over the years, bought toys and resources for him which were clearly aimed at girls rather than boys. I have previously written about Dylan’s love of Disney, a passion which for a long time has been his main interest. At birthdays and Christmas, wanting to give Dylan something that would capture his attention, I have been driven by whichever Disney movie is his current favourite. This has often meant searches for items based on films which are gender-marked female and which feature a princess narrative.

One of Dylan’s enduring interests has been Sleeping Beauty. He seems to be attracted by a number of ingredients in this film including the presence of fairies (flying people have long been exciting and seem to underlie his current love of Peter Pan). One scene in particular makes Dylan squeal with pleasure; there is a fight between the fairies as to whether to decorate Aurora’s dress, and later her cake, pink or blue; using their magic wands to alternate the colour, the fairies squabble:  ‘make it pink!’ ‘make it blue!’ ‘make it pink!’ ‘make it blue!’ These scenes seem to me to symbolise the gender issue brilliantly- though Dylan probably likes them because of the colours and the cake.

frozen2How much influence might these Disney princesses have on children in general and on autistic children in particular? A recent review of the Disney film Frozen in The Guardian Film Blog notes that Disney’s writers are producing increasingly independent and ‘less compliant’ lead female characters. However Anna Smith, the reviewer, bemoans the animators’ continuing use of ‘tiny nipped-in waists, no hips, long legs, skinny arms, pert breasts, small feet and eyes three times the size of the male characters’. While congratulating Disney on the strong female characters at the centre of Frozen (an adaptation of The Snow Queen), and recent female heroes such as Merida in Brave, Smith argues: ‘when so many girls look up to Disney’s princesses as role models, surely it’s time for a rethink of the animation formula.’

princess palace2If girls look up to Disney princesses as role models, what can autistic boys  (and girls) possibly make of them? In my earlier post I suggested that Dylan had engaged in social and emotional learning through his interest in Disney. His favourite films, I argued, had helped him to understand social relationships within a family and to recognise different emotions. Does the learning which I described Dylan as engaging in through Disney films extend to learning these stereotypical gender roles? Or even, given Dylan’s love of films with princesses, to him identifying with non-traditional gender roles?

My son 006During Dylan’s Sleeping Beauty passion I bought him a Princess Palace for Christmas. I thought it would be his heart’s delight but I have to confess that he showed little interest in it and I later donated it to a school fair, virtually unused. Also of only limited interest (though I can’t bring myself to throw it away) is the Snow White musical globe I bought for Dylan at age 13. As I make these reflections I realise that Dylan’s love of Disney films has not particularly translated to an interest in linked resources or toys. Whatever Dylan has learned from Disney, I don’t think it is about gender. Or is it?

Mannequins and Mothers

geppettoMy sense is that ‘my big boy’ is starting to develop some recognition of social roles; Dylan has recently named a character (Geppetto in Pinocchio) as a ‘daddy’ and he sometimes recognises representations of mothers in storybooks. Dylan has been naming me by my social role (‘moo-ey’) for some time now and perhaps has some idea of the meaning of this label (i.e. that other people also have a mummy).  In the first couple of years of Dylan’s life, though, he wasn’t exposed to this role-naming at all.

I was one of those parents who wanted my children to call me by my name rather than by my role.  Sure I was the mother of my children, but I wasn’t only that; my identity as a person went beyond my mothering and, knowing how powerful language is, I wanted that to be acknowledged in what my children called me.  My children would, of course, know that I was their mother – but they didn’t have to call me mother. So when Dylan was born I called myself Lizzie. Dylan’s autism diagnosis at 23 months changed all that. I decided that I needed to simplify language and concepts and so I started to call myself ‘mummy’ instead. This matched the language Dylan was encountering in his picture books, the media and in society in general.  My daughter, just five months old at the time of Dylan’s diagnosis, inevitably shared in this re-naming.

My son 001 Because of the severity of Dylan’s autism and communication ‘impairment’ it would be many years before Dylan spoke my new name. When he did he was around nine years old; an entry in Dylan’s home-school liaison book reported that he had hugged and said ‘mummy’ to a dressmaker’s mannequin that someone had positioned in the school foyer. ‘That’s a compliment for you’ Dylan’s class teacher had written in the book: ‘she’s very petite and no more than a size 6’ .

I am, I hasten to add, not a size 6 but a very healthy 12. If Dylan intended to compare the mannequin to me that day it was not because it reminded him of me specifically, but because of the social role he perceived the mannequin to represent. Given the resemblance between the dimensions of mannequins and Disney princesses, I have to concede the possibility that Dylan has learned more from Disney about gender and social role than he has from me 😉

 Images:
The film images are via Disney and the photographs of Dylan and me were taken by my mother; the other photos are mine.

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.

*

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.

*

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.

*

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.

*

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

*

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.

*

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.