Autism And Friendship: learning from Dylan

I’ve had cause to reflect on friendship recently, partly triggered by Dylan’s social life and partly by an event in the workplace which left me with some questions. In this post I apply my reflections on Dylan’s relationships to the neurotypical world and suggest ways in which we might re-think ‘friendship’.

Ruby*

Dylan July 13 003Last week I took Dylan to the 21st birthday of a young woman he has known since primary school. Dylan and Ruby have grown into beautiful young adults, I thought to myself as I watched them at the party. Ruby had opted for a disco buffet for her celebration. It was a perfect choice; there is nothing like food and dancing to bring together men and women, old and young, family and friends and the autistic and neurotypical.

Dylan’s dancing style is centrifugal; he and I spun each other around, jumping and hopping in ever-increasing circles. I don’t know what Ruby made of Dylan’s dancing but I figured it might be pretty similar to the way I looked at men at discos when I was her age. She can’t have thought it too awful though as she let her mum dance with Dylan for a while.

As well as dancing Dylan took the opportunity to be wine waiter. He held tightly to a bottle of wine, pouring large glasses and doing ‘chink chink cheers’ with whoever was willing. He also enjoyed the buffet. When my back was turned Dylan removed and ate all the sausages from the sausage rolls, leaving the pastry cases in perfect curls on the plate. I suspect he ate all of the chicken nugget supply. For Dylan, this was the ideal party: there aren’t many places you can steal sausages, play with wine and dance like a dervish.

Dylan and Ruby haven’t always been comfortable sharing their space. Over the years there have been a number of altercations and they have sometimes needed separating. If I got a phone call from school to say Dylan had been involved in an incident I would automatically ask ‘and is Ruby alright?’. They could still annoy each other I’m sure – indeed we had to abort a walk which set off on the wrong foot recently – but, happily, having Dylan at the party was a success.

Stepping stones and splash holes

party time 005Dylan doesn’t get to go to many parties. When he was young I organised birthday celebrations at autism-friendly venues such as soft play centres. In time, however, I realised these were not enjoyable experiences for Dylan. Birthday parties are stressful; as well as the challenge of the environment and disruption to routine, guests are noisy, unpredictable and annoying. Dylan much preferred to celebrate his birthday with a family meal at a quiet pub.

Dylan, like many young people with autism, likes to spend time alone. If I arranged for other children to come to the house he would spend the whole visit in a state of anxiety. Other autistic children would go through his DVD collection and toys, interfering with his careful ordering and disrupting his environment. They would want to watch a film which wasn’t on his schedule for the day. Even if they chose the right film, Dylan doesn’t like watching with other people in the room. While generally tolerant of the children he was alongside at school, he didn’t want them in his space at home.

Once I’d realised this I stopped organising such ‘opportunities’. Why impose my ideas of what is appropriate on Dylan? He didn’t want to do play dates. As Dylan entered his adolescent years I discovered that he could tolerate contact with peers for selected activities. A walk in a local valley in the company of a young man Dylan had been at school with was fine, for example; although they didn’t walk together they walked in a similar manner to the same route and destination. Similarly Dylan was quite happy with an occasional picnic trip with Ruby to a bend in the river where they could play separately on the stepping stones (Dylan) and in the splash holes (Ruby).

Ella

Easter 2014 034It’s hard, as the parent of an autistic child, to know how best to support peer group ‘friendships’. While I didn’t want to put Dylan in situations he found stressful, neither did I wish to write off the potential benefits of peer group contact. As well as respecting Dylan’s preference for spending time alone, however, there were other factors which prevented me from setting up more play dates.

Organising social events for autistic children is tricky when your child attends a special school. Although you become familiar with the other children on the bus your child travels on, you may never meet their parents. Furthermore, there are few occasions when you get to visit your child’s school at the same time as other families. In this situation it isn’t easy to make connections with the parents of your child’s peer group. It was a happy chance, then, when it turned out that a new friend through my poetry networks had an autistic daughter the same age as Dylan.

I have written a little about Dylan’s trips out with Ella here, here and here. Although Dylan pays only scant attention to Ella, his relationship with her marks a development in Dylan’s understanding of peer group relationships. He has learned, for example, that he can meet people outside the context of school who have similar interests to him. I’ll never forget Dylan’s astonishment when, visiting Ella at home one day, he discovered that her VHS and DVD collection was almost a complete copy of his own. I also learned, as he pulled all Ella’s films off her shelves and spread them around her bedroom floor (Ella looking on in increasing agitation) that Dylan can be just as annoying to his autistic peers as they are to him.

Christopher*

party time 004Dylan’s relationships with Ruby and Ella are fairly typical of his peer group friendships. I don’t think the fact they are with the opposite sex is especially significant although as Dylan grew up in a predominantly female household I suppose he may feel more comfortable with girls. For a while when he was younger, however, Dylan had a quite exceptional friendship with a boy called Christopher.

For a long time I didn’t know about Christopher. One day however, dropping Dylan off at his primary school following an appointment, I was surprised to see him approach another child and give him an excited squeeze. Anxious about the physical contact I made to intervene but Dylan’s class teacher stopped me: ‘It’s alright – that’s Dylan’s little friend ‘ she said. ‘They’re pleased to see each other. ‘Friend? Dylan? I had never seen Dylan pay attention to anyone his own age except for his sister and step-sister.

Dylan treats siblings as honorary adults. At a young age Dylan discovered that people his own size at home could help him to the things he wanted in the same way parents could; they could rewind videos, reach a packet of crisps, fasten shoelaces and play clapping games. ‘Sister’ and ‘Mog’ were therefore acceptable to Dylan. Apart from this, other children (especially if they were smaller) were to be avoided. Until Christopher.

I didn’t have many opportunities to see Dylan and Christopher together. Once however, while shopping at a supermarket the other side of town, Dylan suddenly ran off. When I caught up with Dylan he was at the other side of the checkout counter, holding Christopher’s hand and making greeting noises. I loved that Dylan had spotted his friend and gone to say hello. Later, when we moved to that part of the city, Dylan and Christopher travelled to and from school on the same minibus. I didn’t get to see them together as Dylan was collected before and dropped off after Christopher, but the escort often told me about their special friendship.

Perhaps in time the friendship between Dylan and Christopher would have moved to out of school contact. One day, however, there was an incident on the bus; Christopher and Dylan got upset and in the kerfuffle Dylan was hit by a flailing arm. This had a significant effect on Dylan who became wary, preferring to sit alone on the bus and no longer interacting freely with Christopher. No matter how much I tried to explain that what had happened was an ‘accident’ Dylan could not be reassured. Although it pained me to watch Dylan lose confidence I told myself that the fact he had experienced such feelings meant that, however severe his disability, he was capable of friendship.

Beyond School

Dylan July 13 002Although Dylan has grown into more comfortable relationships with his peer group there has never been another Christopher. When I let myself dream about Dylan’s future, however, I imagine a house with two or three young men, one of whom looks uncannily like him. I suspect I’ve spent the last four years looking for Christopher. ‘Has Dylan developed any special relationships?’ I ask teachers and care workers periodically. The answer is always the same: Not really.

Key workers and ‘adults who help’ continue to be Dylan’s main reference group. Perhaps that’s not so surprising: Dylan has enough self-awareness to recognise that he needs someone to support him with self care, food preparation and accessing the community. He is probably smart to put his emotional energy into those people he knows have a role in helping him with these things. What does he have to gain from investing time in members of a peer group? They are both the problem (too noisy, unpredictable and annoying) and the competition (also vying for the attention of a ‘helping adult’).

While recognising that Dylan may not prioritise friendships with his peer group, communal living is an experience which I want him to have, especially as Dylan has spent much of his life alone with me. At Ruby’s party I was reminded again of the opportunities which social contact brings; a shared house, I told myself, will help Dylan develop emotional and social skills. From time to time I’ve discussed with other parents the possibility of creating such a house. The problem, of course, is that like-minded parents do not necessarily have well-matched children. In the absence of a peer group chosen by me or identified by Dylan his next move will have to be into an established group. Although I am anxious about this it is, of course, no different to class groups in school. If teachers can manage their classrooms so they are positive environments then surely an adult community can aspire to the same goal?

Back to school

IMG_0193Except the influence which teachers can have on peer group relationships is, I know, limited. Although school years have been described as the happiest days of our lives there is increasing awareness that for many children this is not the case; for some they are the most miserable. In education there is a growing focus on the experience of the child with attempts to access the ‘voice’ of young and disabled children through participatory research methods. Against this background, ‘children’s friendship’ is an increasingly popular focus for enquiry.

I attended a seminar given by a colleague on this topic recently. Occasionally one of my undergraduate students opts to focus on friendship for a work placement project and I hoped the seminar would give me ideas for methods and literature I might share. As it was a lunchtime seminar following a busy morning I was concentrating on my sandwich as much as the seminar initially. Soon, however, I noticed that the categorisation of children’s friendship, and particularly its focus on play, were problematic if I made Dylan my reference point. For the next ten minutes I listened with Dylan in mind. This proved a revelation; the conceptualisation of ‘friendship’ simply did not work.

april-may 09 115While my colleague was describing research in the area I tried to imagine not just Dylan but other children on the autistic spectrum. It still wasn’t working. So I pushed to what might be considered the ‘mildest’ end of the spectrum; the place where the Aspie girls hang out. These are the girls who may ‘pass’ for years as neurotypical (sometimes a lifetime) because they are bright and articulate with a range of interests. There is increasing interest in these girls; because the diagnostic tool for autism has been primarily derived from, aimed at and applied to boys it is suggested that girls on the Asperger’s end of the spectrum tend to go unidentified. The growing research in the area suggests that for these girls the social experience of school is often miserable; awkward and on the edges, Aspie girls can find it difficult to interpret the environment or fit in. Some of the girls who experience bullying at school, it is suggested, may fall into this group of undiagnosed autistic.

My colleague started to describe one of the girls in her classroom study. She was on the margins. She wasn’t reporting friendships to my colleague using the same language or concepts as the other girls in the study nor was she mentioned by her classmates as a friend; she was, suggested my colleague, socially isolated. The power of educational research is that it is used to support and develop practice; practitioners build ideas from research into their work and promote them in educational environments. The assumption drawn from this particular study was that the isolated girl needed to be helped to develop more appropriate patterns of social interaction, i.e. to form ‘friendships’ with her peers.

The more I thought about the girl in the case study the more I was convinced that it wasn’t she who needed help but the other children in the class. Surely an inclusive environment would be one in which a group is able to support someone who chooses to inhabit the peripheral zone of a classroom? Shouldn’t we be encouraging children to understand that not everyone wants to be sociable and spend their time small talking with peers? Ought we not to be promoting a model of diversity in relation to social interaction in classrooms rather than a monolithic concept of friendship? This girl and Dylan, I realised, were not only not adequately described by this research, they were problematised by it. ‘Friendship’, it seemed, was another of those norms which feel so irrelevant to Dylan’s life and such an obstacle to his inclusion in society. As the vignettes of Dylan’s interactions with some of his peers show, Dylan is capable of forming meaningful relationships; while they might not follow the dominant model of friendship, they are no less valuable for that. As Dylan’s journey into communal living gets underway I will not doubt reflect further on this issue.

*names have been changed.

Acknowledgements

I am grateful to my colleague for inadvertently providing me with the opportunity to reflect on Dylan’s relationships with others and the conceptualisation of ‘friendship’. My colleague’s research was not concerned with autism but with other issues which I do not address in this post and from which I confess I attempted to divert attention during the latter part of the seminar. My left-field interjections were fielded gracefully 🙂

For information about issues related to ‘Aspie Girls’ there is no better resource than Cynthia Kim’s excellent blog Musings of an Aspie: http://musingsofanaspie.com/about/

Images:

The photos of Dylan and Ella were taken on the banks of the canal at Sheffield and Chesterfield. The pictures of Dylan as an adult were taken at the Under the Stars Disco. The children’s party photos were taken at Dylan’s 6th birthday at a soft play centre. The classroom photo is of a younger me working with a group of primary school children on a writing project. The shadow photo is by (and of) me.