When Chronological Age Is Not Appropriate

Dylan turned 20 last week. This year his gifts had a sports theme but there were also Disney DVDs and children’s books. Just days before I went birthday shopping I realised that Peter Pan (who has been Dylan’s passion for years) had been replaced in his affections by Ariel. I become so accustomed to Dylan’s heroes  that I don’t always notice when they change.  Certainly that was the case when Postman Pat gave way to Snow White (who in turn gave way to Peter Pan). However, picking a Little Mermaid book up from Dylan’s bed for the umpteenth time last week, the light dawned.

Often when I am shopping for Dylan I need to check details with shop assistants.  Do these swim goggles have easily-detachable parts?  Do you stock Disney versions of the Little Mermaid?  Do you have any other Ariel products? When my questioning seems odd I sometimes explain: it’s for my autistic son.  In a previous post I’ve reflected on autism and socialisation to gender roles, arguing that gender is not a meaningful concept for Dylan and doesn’t inform his choice of activities. Ariel may not be as boyish as Peter Pan but that doesn’t bother me;  I’ve bought plenty of princesses for Dylan over the years.  There is a level of awareness of autism now which means that shop assistants have some understanding of this and rarely flinch. However, what I notice does cause consternation is the explanation: it’s for my adult son.

Who Cares?

Some of Dylan’s birthday presents are ones which many men might be glad of.  He enjoys being active so sports gifts are not much different than for other 20 year olds. Dylan also has an interest in clothes so it’s possible to buy him fashions from the High Street; Dylan has an array of hats, bags and the latest ear buds, Beats and eye wear just like other young people.

Coastal Path, North Yorkshire, 2011

However, if that sack hat were twitched slightly it might expose the name tape stitched into it. And while, in the photo below, Dylan looks like any young man at Camden Lock Market enjoying the Sunday atmosphere, he’s more than likely listening to The Wheels on the Bus or Old MacDonald. Dylan is developing some age-appropriate music preferences but he still chooses nursery rhymes when in need of reassurance and  I let him listen to these in potentially stressful places.  In this way I encourage Dylan to ‘go undercover’ ; only Dylan and I know of the adaptations made to his clothes and music in order to keep him safe and comfortable. Adjustments such as these are made so that Dylan can blend in with his peer group and not draw attention to himself.

This suggests that the concept of age-appropriate behaviour is something which matters to a group rather than to the individual. There are unwritten codes about what is deemed appropriate behaviour and any person who seems not to be conforming to these codes runs the risk of being reprimanded by the group (through disapproving looks or verbal challenge). It is often peer pressure, then, that directs us towards appropriate ‘norms’ of behaviour based on chronological age.

Act Your Age

Camden Lock Market, London, 2013

For autistic children and adults, particularly where a learning disability is involved, behaviour does not map well onto chronological age. This can be perceived as problematic in a society where ‘grow up’, ‘act your age’ and ‘don’t be childish’ are frequent admonitions.  In Western society we do not tolerate those who habitually act as if they were younger than their chronological age (childish), nor do we appreciate adults ‘getting in touch’ with their child in response to a specific incident or experience (childlike). Not only does society not value these qualities, we are actively encouraged to suppress them in order to engage effectively with the demands of education, the work place and social life.

Here I am referring to emotional and social, rather than cognitive, maturity; even if young people struggle in the education system when compared to their peer group, we expect them to be adult in their approach to managing their subsequent employment and family life. There is not much place for the child in our society. Imagine, then, the challenge which a grown man with childlike qualities and behaviours poses to those around him. And for Dylan, the challenge of age-appropriate behaviour is not just emotional and social but cognitive too.

The Age-Related Profile

I don’t like the terms ‘high’ and ‘low’ functioning and I don’t use these labels myself.  I’m not a fan of chronological age as a description of intellectual functioning, either, though we use this for educational purposes. On entry to school, and for many years afterwards, teachers reported that they were not able to make reliable assessments of Dylan. More recently, however, they were able to make some measures of his cognitive functioning, reporting it as 2.5 years when Dylan was 14, rising to 4.5 years on leaving school last summer at age 19.

When we use the expressions high and low functioning what we are measuring with is the yardstick of chronological age; a child who is ‘low functioning’ is performing significantly below the level expected for their chronological age. By refusing to use these labels to describe Dylan I am indicating that I find chronological age an unsatisfactory measure of my son’s ability. While I may not like using chronological age-related measures for Dylan however,  I recognise him in the description of a child of 4.5 years. Many of the recent developments I’ve observed in Dylan are not unlike those I might expect to see in a child who is getting ready to start school. Dylan is now taking an interest in turn taking games, especially clapping rhymes. His imitation skills have improved and he will fairly reliably copy actions. Some of these skills are precursors of linguistic development and Dylan is, indeed, extending his vocabulary.

Children’s drawings are good indicators of cognitive and social development with clear stages identified in the representation of the human form.  When asked to draw a person a very young child will offer, for their first discernible human being, a roundy body with key facial features.  Later, the child will add detail but some will not be realistic; the legs which can be seen through clothes for example or shoes at right angles. At this stage, triangular bodies are typical and represent the child’s recognition that people wear clothes rather than walking around naked (the triangle-shape is the dress on a female person).  Later, and in line with the child’s cognitive and social development, the human form may be represented in profile. It is only after this (and at the most complex stage of representation) that a child may produce an aerial view of an object.

‘A Man’ by Dylan, 14/03/14

For Dylan’s birthday last week we went out for a meal. In a lull during service, trying to keep Dylan occupied, I gave him a pen and serviette and asked him to draw a man.  This is not something I would normally do with Dylan who has shown no interest, so far, in drawing nor any inclination to hold a pen. However, experience has taught me that all of  a sudden things can change and I try to let myself never say Never.  Dylan didn’t respond to my request so I drew a circle on the serviette. To my surprise he then added to the circle, in response to my verbal request, eyes, ears, nose, mouth, hair and neck. Voila!  On his 20th birthday, Dylan’s first drawing of a person! I was so proud I photographed the fragile corner of serviette.

These behaviours –  imitation, turn-taking, clapping games, vocalisation and drawing – are developmental milestones which are described in the child development literature and which could be indicators that Dylan is getting ready to learn. Dylan is still developing and is following many of the standard developmental stages; what is different is that these do not follow the usual trajectory of chronological age. Dylan’s current cognitive functioning appears to be similar to that of a neurotypical child starting school. It is in this sense that I have found the description of Dylan as functioning at 4.5 years helpful; it has enabled me to reflect on Dylan’s progress and  think about how I can support him to the next stage.

Spiky Profiles

20th birthday celebration in the pub

There are, however, ways in which Dylan’s profile is more complex. Although it can be helpful to think of him as cognitively 4.5 years the fact that Dylan is physically 20 years old influences his developmental path. Dylan’s core emerging vocabulary is not the same as a young child’s, for example, as it includes words which reflect his different preoccupations. While many of his interests are similar to a five year old (especially in relation to books and films) Dylan also makes some age-appropriate film choices,  such as Harry Potter and Lord of the Rings, and increasingly age-appropriate music choices. Dylan has what I would call a ‘spiky profile’.

The term ‘spiky profile’ refers to individuals whose achievement varies across a range of different categories.  While the spikes are broad and extreme for Dylan due to the gap between his chronological and cognitive age, many of us demonstrate some sort of spikiness. I remember when I was an undergraduate one of my lecturers told me about research she was doing on patterns of achievement at A Level and on graduation from an undergraduate programme. While it was satisfying, she told me, to see consistency in individual profiles (the student who achieved three grade As at A Level and then a First Class Honours degree) this was a rare occurrence. More typically there was no consistency within individual profiles. Her description of these ‘spiky profiles’ influenced my thinking about achievement and has been something I have observed in my own students as well as in my observations of Dylan.

 Educational Adjustments

Chronological age is the tool which most societies use to plan for and deliver mass education. A few countries try to take account of the gap between chronological age and achievement by requiring students to repeat chronological age stages which they fail. More commonly, however, children move through the education system in year groups.

When I was training to teach, a mentor told me that the way in which we set ‘norms’ for pupil achievement around chronological age were not only unhelpful but misguided.  In the context of a secondary school which used ‘mixed ability’ grouping I was told that if I pitched my teaching down the middle of a group I could be sure to miss everyone in the class. Remember, my mentor told me, that there is no such thing as a 50th centile child.  Centiles and norms are statistical calculations, he pointed out, to describe a scatter of points on a graph. The children in my class were scattered all around the 50th centile line bisecting the graph, but none of them actually fell onto the line itself. If I wanted I could go on planning lessons which catered for the ‘norm’, but I needed to be aware that if I did so my lessons would meet no one’s needs. His plea was for me to differentiate my teaching; I needed to individualise my resources, especially for the outlying pupils on the graph. Establishing expectations for children and adults by chronological age and measuring progress against a mean, or norm, hurts everyone, not just those with special needs. However, it is the outlying children who are hurt the most by the tyranny of chronological age.

Dylan’s particular profile of need means that he is just starting to be ready for school-based learning. Ideally, Dylan would start formal education now, with skilled practitioners who could adapt the primary school curriculum for adult learners.  All of the skills Dylan is demonstrating could be exploited for learning through well-judged intervention. Now is the time that Dylan could engage with project work on ‘My Body’ or ‘The Seasons’.  Now is when he could be supported to learn makaton signs.  A skilled Speech and Language Therapist could probably equip Dylan with a communication system over the next few years. Now would be the time to support him with drawing and making. Now is when Dylan could benefit from joining in group activities, doing class jobs and learning to be part of a community.

I am not arguing for extended state education (though it is a statutory entitlement to 25 years even though few Local Authorities provide it to young people such as Dylan) but rather for a more individualised approach to when education is accessed. Now that Dylan is 20 I wonder whether he might not have been better off in an alternative care setting until adulthood. While other children his age were in school, Dylan might have benefitted more from walking the moors, play and occupational therapy, travel  and creative approaches to developing the social and emotional landscape and skills which are precursors for learning.  Then, with the development of the skills described here, Dylan could have entered formal education for his 15 years of full time entitlement.  The principle of this would be that educational provision is something which we access when we are ready for and can benefit most from it.

 In Defence of the Age-Inappropriate

While you couldn’t individualise an education system for everyone there must be some individuals for whom an individualised scheduling of education is possible and desirable. And even if it isn’t possible to customise in quite the way I describe here, there must be a way of reducing the emphasis on chronological age.  I have had frequent encounters with well-meaning professionals who express concern at the use of resources which are not age-appropriate. Parents are often discouraged from letting older children and adults engage with materials which are aimed at significantly younger children. While I understand this concern I also know that we learn best when we are motivated.

Dylan is interested in Disney and, at the moment, it is the story of the Little Mermaid which is capturing his attention. At this point in time, this is an appropriate support for Dylan given his emotional, social and cognitive development. So I won’t be preventing him from enjoying his books and DVD – rather I will be encouraging him by offering vocabulary when he asks for it and making links with his own life and the other stories he knows. In time I’ll try to extend his interest; I’m already gently suggesting The Wizard of Oz to him. So if you see me playing counting games or reading Rumble in the Jungle with my 20 year old, don’t condemn me too quickly for not doing age-appropriate activities:  consider, instead, that I might be doing Dylan-appropriate things.

Is My Autistic Boy My Son?

I’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.

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.

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’.

I 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? 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 may not necessarily be 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. Both my children were 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’.

Challenging 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

As 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.

How 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.’

If 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?

During 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

My 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.

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. 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 may have 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.

Rudolf Steiner To Walt Disney: education and the spectrum of choice

I don’t remember exactly how old Dylan was when I realised that the only thing he was interested in was watching Disney videos but he must have been less than two years. Dylan’s films, books and CDs have been a constant presence throughout his life and at 19 they continue to be his main interest.

It’s taken me a long time to feel comfortable with Disney. I embarked on parenthood with other ideas: I had been determined that my children would play with simple toys and natural materials; occupy themselves in creative and imaginative pursuits; spend time outdoors; and engage with handcraft and art activities. Electronic gadgets, computers and television sets were to be avoided or strictly limited. I’ve no doubt that many parents of autistic children will be amused by this description. However, for many years I’d been attracted to the philosophy of Rudolf Steiner which emphasised a curriculum based on the creative arts and the development of imagination in young children through free play.

Although my preference was for Steiner education I realised that Dylan’s diagnosis might make it less than ideal so enrolled him in a Montessori Nursery where the structured approach was said to suit some autistic children. My daughter, meanwhile, attended a Steiner Kindergarten and I assisted there  when Dylan was at nursery. I remember one day a child brought Thomas the Tank Engine slippers to wear which lit up and ‘tooted’ as he ran around (the sort Dylan might like).  I watched the Kindergarten Leader become increasingly exasperated by the sound-and-light show until, eventually, she removed the batteries. My hunch  that Dylan would not find a Steiner environment easy was probably right, I thought to myself.

 Learning with Disney

On Dylan’s journey through the education system he has travelled almost as far as possible from my original ideological position. Apart from the Montessori Nursery and a year in an integrated resource, Dylan has attended special schools where his teachers have (quite rightly) focused on his key interests in order to motivate him for learning. This has inevitably meant that Dylan has had rich access to electronic gadgets, computers and television sets while there has been considerably less emphasis on wooden toys and natural materials, creative and imaginative play, and handcraft and art activities.  Dylan’s educational environment may have been quite unlike a Steiner school but I’m fairly sure that it was, nonetheless, an effective learning environment.  For children such as Dylan, Disney resources can be the most appropriate approach to motivating and engaging pupils in educational settings; certainly over the years Dylan appears to have been ‘learning with Disney’.

Because he has watched Disney films repeatedly, Dylan is familiar with details of plot and character which can be used to extend his social and emotional learning. I have used Disney characters to work on Dylan’s understanding of family; this not only reinforces social roles but helps Dylan make sense of the world. Although it is easy to criticise the stereotypical social roles portrayed in Disney films, for Dylan these have been a useful vehicle for understanding some of his most fundamental relationships (mother, sister, teacher, friend).

Because of the exaggerated but simple characterisation, Disney films are also useful for identifying emotional states. And because the Disney plots have moral content they can be used to rehearse concepts of ‘right’ and ‘wrong’ and to help Dylan to recognise danger and harm.  Some of the content in Disney films, particularly fairy tales narratives, have been criticised as inappropriate. Scenes such as the Wicked Queen giving Snow White the apple, however, Bambi running from fire in the forest and the Lion King being challenged by Scar, all capture Dylan’s attention enough to capitalise on his interest and exploit this for purposes of learning.   It is Dylan’s interest in Disney films which is key here; until I tried to address this social and emotional learning through film, Dylan had shown no interest in recognising or identifying feelings or relationships.

For other children, of course, this learning emerges from a variety of narrative formats; I remember watching the children make meaning of oral storytelling while at Kindergarten, for example. But this is not a method which works for Dylan. As a visual learner, Dylan responds to the colours and caricatures of animation. As well as vivid moving pictures, repeated viewings have been a key to learning for Dylan who seems to approach each new film by layering information. The first time Dylan watches a film he will often only sample it; the next time he may sample a different section or reinforce the sequence he has already sampled; the third time builds another section; and so on.  This layering proceeds over what may be many screenings before Dylan has a complete map of the film. This is a slow process of accretion and very different to the way many of us watch films (how often do we watch a film more than once let alone the hundreds of viewings which Dylan has made of his films?). However, once the process is complete the film is embedded in Dylan’s memory. In terms of potential for learning, this is a tremendous resource.

Finally, as well as visual content and repeated viewing of content, control of content seems to be important. Dylan likes to direct his viewing; I think he likes the predictability and reliability of a film which always happens in the same order, at the same pace and with the same voices (compared to a human being reading a story book slightly differently each time). I’d say that it is these four elements  – interest, visual content, repetition and control – which particularly support Dylan’s learning and which Disney is so good at providing.

 ‘It’s Off to Work we Go’

It took me a while to realise that Dylan was learning with Disney, especially as the learning can be unplanned and not always what I might want to teach.  For example, for years Dylan had ‘pulling people’s ears’ identified in his school behaviour chart, with a series of actions and targets set for re-directing and discouraging this behaviour.  I was always puzzled by the ear-pulling which Dylan seemed to do spontaneously and usually to people he liked. I made the observation that while the school may regard Dylan’s ear-pulling as inappropriate, I thought it was actually an act of affection. Then one day, walking into the room while Snow White and the Seven Dwarfs was playing, I caught a scene in which Dopey holds his lips up to Snow White for a kiss as the dwarfs leave for work one day.  Snow White,  preferring to kiss the top of Dopey’s head, takes him by the ears in order to re-orientate his face to the floor so she can do this. Suddenly the penny dropped; this tender gesture between Snow White and Dopey was one which Dylan had copied; he took people he loved by both ears, just as he had seen Snow White do to Dopey.

A much more worrying example of Dylan learning from Disney films took me a while to figure out. Dylan presents a particularly high risk around water as although he cannot swim he lacks sense of danger and in the past has flung himself fully-clothed into deep water and had to be rescued.  Around any body of water (harbours, lakes, rivers, reservoirs) I have to keep a very close eye on Dylan. So I wasn’t overly-surprised – though I was very alarmed – to find Dylan submerged in his bath water one day. I had left Dylan only briefly but this was long enough for me to find him under the water, holding his own head down. That day I yanked Dylan up out of the bath water coughing and spluttering; I resolved to not leave him alone in the bathroom, regretting the surveillance and lack of privacy for Dylan which this meant.  Another similar incident saw Dylan’s support plan updated to showers rather than baths; again, a huge loss for Dylan who loves his bath times.

This desire to be underwater started to spread to other watery contexts. On holiday Dylan would throw himself to the bottom of the sea, alarmingly. When I took him swimming he would spend the entire session attempting to go to the bottom of the pool. As a strong swimmer I wasn’t unduly worried about the behaviour in itself; what worried me  was that it seemed to be based on a desire to drown himself, rather than to swim.

I chanced, eventually, on the explanation for Dylan’s behaviour which was, again, to be found in a Disney film (or, as it turned out, in a variety of Disney films):  Nemo involves various underwater sequences where characters are miraculously able to breathe, talk and live without coming to any harm. Another penny-dropping moment; Dylan was trying to copy the behaviour of characters in his favourite films who he loved and wanted to be like.  Further research revealed that a scene in Pinocchio takes place underwater and a crucial scene in a favourite Studio Ghibli film, Earthsea, also involves an underwater sequence.  Unfortunately, these underwater scenes are always fairly glamorous; the characters have great adventures and it seems to me undergo some sort of transformation while in the water (an appropriate image, I suppose, for being re-born).

While Dylan throwing himself under water and pulling people’s ears may not be what I’d choose or encourage, they are illustrations of effective learning arising from motivation and consolidation through repeated exposure to the learning prompt. I am left wondering what else Dylan has learned through  film and animation?  Perhaps there are other things he does which I don’t understand because I haven’t got his intimate knowledge of the source material?

Bracketing the handcrafts

At the end of Dylan’s school career I was fairly confident that the decisions I’d made about his educational provision up to the age of 19 had been appropriate.  This didn’t, however, stop me from revisiting these choices as Dylan prepared to leave school.  Researching provision in my area I was delighted to find a community based on Steiner principles which offered education to adults with learning disabilities and autism. The first visit I made to the community was alone.  Everything about the visit charmed me; the activities included handcrafts such as weaving, pottery and basket-making as well as woodwork and horticulture. The classrooms and living areas were beautifully decorated with the distinctive Steiner colours, fabrics and natural materials. Community meals were sourced from the allotments and gardens. I walked around the centre that day as if in a honey-daze; it was so perfect I would have happily lived there myself.

I visited again soon after with Dylan. It never occurred to me that anything could interrupt the dream but – and you can perhaps tell what’s coming – I had an awakening.  Dylan very quickly grasped what was on offer at the community – or, more importantly, what was not – and exited at high speed, heading straight for the car park. It wasn’t so much that Dylan had little interest in the activities on offer as that he couldn’t find any evidence of the things he did have an interest in:  no TV Lounge or Computer room and no evidence of TVs in bedrooms either.  Dylan’s protest that day was very unsettling and frustrating for me but when I thought about it later  –  from Dylan’s perspective  – I realised that it had been ridiculous of me to shortlist a placement which wouldn’t support the one thing which mattered to Dylan more than anything else in the world. Dylan’s special interest is film and Disney is his passion: how could I possibly have ignored this?

This experience reminded me of how difficult it can be to bracket our own preferences when making choices on behalf of our children.  However, bracket them I must because it is Dylan’s life, not mine; while I can’t, and should not try to, overturn my values and beliefs when making decisions, I do need to filter these through the lens of Dylan’s interests and preferences.  Dylan’s life would be different and, I suspect, less happy without the gift of Disney; it would be wrong for me to take that from him.

Acknowledgement:

Images via Disney and QuotesDump.com (source of image of Steiner classroom unknown but appreciated).