Dylan On The Island Of Sodor

I had the idea to take Dylan to the Isle of Man after reading that it was the basis for the Thomas the Tank Engine stories. The Isle of Man forms the Diocese of ‘Sodor and Man’ and the island’s Bishop is known as ‘Bishop of Sodor and Man’. There is, however, no island of Sodor;  the name is Old Norse and refers to the Scottish Hebrides which were once part of ‘The Kingdom of Mann and the Isles’ but over which the Bishop no longer has authority. The Reverend W Awdry modelled his fictional Island of Sodor on the Isle of Man, inspired by holidays he spent there as a child.

My research suggested the Isle of Man could be an ideal holiday destination for Dylan as well:  far enough to require an overnight stay in a hotel (which he loves), a ferry trip (which he adores) and (once on the island) trams and trains galore.  I am happy to report that the island didn’t disappoint…

Day One

I have kept my resolve of ‘no more Premier Inns‘  and Dylan, it turns out, is perfectly happy to stay in any chain of hotel.  What this has taught me is that Dylan uses language creatively:  when he said ‘moon’  (based on the Premier Inn logo) he meant hotel. Without the word ‘hotel’, Dylan found a word to describe the thing he wanted to talk about.  Now that we are not staying in Premier Inns, he uses the word ‘bed’ instead of ‘moon’.

Our en route overnight stays in Liverpool also reminded me how keen Dylan’s memory is. We had visited Liverpool once before and Dylan had enjoyed riding a carousel at the Albert Docks.  I had forgotten this but Dylan hadn’t; he said ‘horse’ repeatedly over dinner that evening and afterwards set up such a pace along the quayside I fell over trying to catch up. He was heading for the carousel I realised later (unfortunately, not working).

The fall was a shock: I sprawled flat out on the cobbles. Of course, people rushed to help me and I brushed them off – but afterwards I realised I was sore and bruised. It was a good reminder about supporting Dylan; after that, I made sure I kept him within reach, at the end of my voice. ‘You have to wait for your mum. Dylan’, I said. ‘I’m not as quick as you are’. For the first time, I had a sense of what it feels like to be an ageing parent.

Day Two

We left England in a heat wave and sailed to the Island of Sodor on a perfectly still sea. The next day, however, we woke to soaking rain. ‘Henry, Henry’, Dylan kept telling me. It took me a while to realise he wanted me to talk about the story where Henry stays in a tunnel because he doesn’t want to get his paint wet. It turned out that we would talk about Henry a lot during the week 😦

After a drenching on the coast path above Peel on our first day on the island, we headed back to our cottage in St John’s, the centre of the Isle of Man and the site of a Viking Parliament (or ‘Thing’). I was interested in the history and politics of Tynwad Hill but Dylan was more interested in the Tynwald Inn. He really enjoys spending time in pubs;  a packet of crisps and a couple of pints of blackcurrant cordial make Dylan very happy indeed.

We had daily ‘programme strips’ and an assortment of symbols with us and each evening Dylan and I would negotiate activities for the following day.  Later in the week Dylan picked out a ‘pub’ symbol and, looking to see if I agreed, added it on our programme for the following evening. I love it when Dylan’s symbols become genuine two-way communication like this.


Day Three

More rain so we drove to Port Erin where we took a steam train to Douglas. Dylan’s delight in the crashing waves in the bay reminded me not to assume that bad weather is a bad thing.

Day Four

As well as steam trains the island has an electric train line. Today we took it from Douglas as far as Laxey where we visited a water wheel – another of Dylan’s special interests. Then, it was up Snaefell, the highest mountain on the island, by electric rail. We couldn’t see much but sometimes it’s the journey not the destination that matters.  Dylan seemed to like riding the electric trains even more than the steam trains.

Day Five

today we woke to a strange silence on Sodor:  it had stopped raining.  We chanced the coastal path, tracking the southern peninsula between Port Erin and Port St Mary. We didn’t see any porpoises in The Sound but it was a fabulous day. The only tricky moment was when the steam train back to Port Erin which I had promised we would take (and clock-watched all day, so as to be in time for) didn’t turn up 😦  Dylan was rattled but he accepted the ordinary alternative (under any other circumstances his heart’s delight) of a country bus…

Day Six

More rain. More road diversions (something to do with Quad bikes and the TT). Undeterred we found a way to Ramsey where we took the electric train south to Laxey, the point at which we had left the line earlier in the week. This was not my best idea; having been to Laxey before, Dylan wanted to re-visit the wheel and take the mountain train again. And the train timetable wasn’t set up to accommodate my itinerary; we had a long wait on the platform for a northbound train. Back in Ramsey, it was still raining…

Day Seven

On our last day we woke to sun 🙂 I had been told to make sure I visited one of the island’s many glens so today we followed a Greenway before plunging into Glen Maye. Here was justification for rain: green, lush, strangely tropical.  Oh it was glorious! The attraction, for Dylan, was a waterfall; he watched the water, transfixed. The glen winds down to a small cove where Dylan threw stones. Then it was a scramble up to the coast path and on to Peel where we visited the castle and (at last) paddled in the sea.

Day Eight

Douglas is famed for its horse trams but we hadn’t seen them all week due to the rain. Dylan had seemed curious about the ‘horse and carriage’ symbol we had with us so I was pleased to see them in Douglas on the day we were leaving. They operate to a strict timetable, however, and there wasn’t time for us to ride around the bay before check-in for our ferry.

Explaining this to Dylan was difficult. He was insistent, pulling me towards the horse and trying to climb into the carriage. A quick-thinking passenger  suggested we ride as far as the Villa Marina and walk back in time for our ferry. I was a little nervous about whether Dylan would get off when the time came but I decided to chance it.  I am glad that I did as it turned out that Dylan had a particular reason for wanting to ride in a horse tram. As we set off he turned to me and said ‘Pinocchio’, with an air of satisfaction. Pinocchio? I replied, puzzled. Then I remembered that, at some point in the story, Pinocchio rides in a horse and carriage; Dylan had made a connection between his life and his books.

On the boat, Dylan loves to look out at the wake behind us.  I had pre-booked seats in one of the lounges and we were lucky that this gave access to a small deck at the back where Dylan could stand. He was there for over an hour after we left Liverpool and it was the same when we left Douglas. As we pulled away, the Isle of Man seemed tethered under cloud like myth.

Day Nine

We stayed a night in Liverpool again on our return journey (sadly, the horse carousel was still not working). Before we left next morning, we called in to see an Egon Schiele/Fancesca Woodman exhibition at the Tate. I hadn’t been to Tate Liverpool before so this was a great opportunity to visit and an excellent end to the holiday. How lucky I am that Dylan shares my love of art – his visual intelligence and sensitivity make him a most excellent person to visit with 🙂

Stopping to picnic on the way home, we needed sun hats; England was as warm as when we left. We had had such a good time on the Island of Sodor, though, the rain didn’t matter. ‘We weren’t like Henry’ I said to Dylan. ‘We didn’t mind getting wet’.



Why Friendly Can Be Better Than Relaxed: autism, accessibility and the arts

2014-02-22 14.59.39I’ve been wanting to write about accessibility for a while but have hesitated because ‘Tinc’ (who blogs at Tincture of Museum) already does it brilliantly. Tinc is well-qualified to do so; having resigned a career as a librarian to spend more time with her family (which includes a daughter with Aspergers) she now supports a variety of museums as a volunteer and blogger.

Tinc focuses on a range of issues of interest to museologists but her personal experience of autism means that she has particular insight into the ways in which museums can improve accessibility for visitors who are autistic (see for example her post about the London Science Museum). After Tinc generously tagged me in a round-up of blogs on museums and autism I thought I’d offer some reflections on Dylan’s experience of accessing the arts. In this piece I explore the terms ‘autism friendly’, ‘inclusive’ and ‘relaxed’ in relation to a range of artforms and organisations. There doesn’t seem to be agreement, within or across sectors, about the various terms used by organisations so the sense I make of these definitions is my own, based on personal experience. I make only brief reference to museums, however, and refer anyone with a particular interest in that sector to Tinc 🙂


2014-03-23 14.24.44If I encounter the term ‘Autism-Friendly’ I assume adjustments have been made to a venue or event with specific reference to the needs of autistic visitors. Such adjustments could include the selection of material; trained staff; adaptations to the environment to reduce sensory stimuli; changes to the timing and sequencing of an event; production of autism-specific resources; or ring-fencing of places to the autism community.

An event advertised as ‘Inclusive’ may also include adjustments to the environment and scheduling of an event; while these are often helpful in relation to autism, such events are not developed specifically for autistic visitors but aim to improve accessibility for all disabled visitors. I’ve encountered the term ‘Relaxed’, meanwhile, in relation to live theatre performance. My experience was that the event  did not incorporate significant adjustments to the environment. At relaxed performances, however, the audience is not required to adhere to the usual conventions (for example being silent) and audience participation is encouraged. I suggest that not only are such events not autism-specific, some of their features may be challenging for some people with ASC.

Managing without adjustments: libraries and art galleries

2014-03-08 14.38.38Of course not everyone who is autistic requires adjustments in order to access ‘the arts’. Even with severe autism and a language and learning disability, Dylan manages perfectly well without adaptations in some settings. Libraries, for example, are fine; in fact they are one of Dylan’s favourite places and a regular fixture on his weekly schedule. It might be more of an issue if Dylan needed to access the adult section of a library but the material he is interested in is located in the children’s section which tends to be less formal.That’s not to say issues don’t arise: he has had to learn not to remove library labels from books and to accept that an item he wants might have been borrowed by another library-user. These are reasonable lessons, however, rather than accessibility issues.

2014-03-08 14.37.59Because Dylan doesn’t read or write his interest in books is based on his love of illustration. Dylan’s strong orientation to the visual world means that art galleries are also of interest to him and, as with libraries, he manages these without adjustment. Although Dylan negotiates the space idiosyncratically, no adaptations are needed. Dylan has had to learn not to touch and to accept that if other people are looking then he will have to wait; equally he knows that if he stands too long before a painting I will encourage him to move on. But, again, these are reasonable things for Dylan to learn. I don’t think I’ve ever seen an art gallery advertise ‘inclusive’ viewings and I don’t think this is something Dylan needs. I do sometimes wish, however, that separate sessions could be scheduled for those who look askance at Dylan for being vocal or for moving quick, quick, slow.

Understanding adjustments: managing museums

Although, as the blogs showcased by Tinc illustrate, some museums have become accessibility trailblazers, Dylan has so far managed without adjustments; this is not because he wouldn’t benefit from autism-friendly sessions but because I haven’t as yet been able to visit (these are mostly offered by the London museums). Although there are aspects of museums which Dylan finds challenging he copes pretty well. We make regular visits to local museums and, as with art galleries, Dylan has favourite exhibits. In the Millennium Galleries it is ‘cutlery dragon’ and at Weston Park Museum it’s the Polar Bear, the leaf-cutting ant colony and some local landscapes and portraits. Dylan often performs ritual greetings with his favourite exhibits; in front of Bear’s display cabinet, for example, he repeatedly charges a nearby whale harpoon.

The above examples illustrate Dylan’s preference for natural history and art. He also enjoys machines, particularly those involving steam, so local museums linked to our area’s industrial history are popular. Dylan tends to have less interest in social history unless there is something about the presentation which captures his attention; he loves the carriage ride around a Viking village at Yorvik Museum, I suspect, because the reconstruction feels like a movie set.

What Dylan needs when he visits museums is understanding as much as adjustment; at Yorvik for example it takes him a little while to get in and out of the carriage and he needs help to turn off the audio information. Ideally, we need to ride in our own carriage (and have been able to except for at very busy times). Dylan usually gets this sort of understanding in bucket loads from staff at museums. Although members of the public are also usually understanding, if Dylan experiences an obstacle it does tend to involve other visitors. Although this is sometimes because Dylan’s presence unsettles a member of the public, it is more often the other way around. Perhaps one of the key benefits of autism-friendly initiatives is that they offer autistic visitors a bit of time with the museum to themselves.

Inclusive cinema

thechildrensmediaconferenceSometimes an adjusted setting can be a stepping stone to a regular setting and I have used inclusive cinema screenings for this purpose with great success. Dylan has been passionate about film since he was young but because his habit is to watch alone the cinema did not appear to be an option; after various attempts to take Dylan ended in failure I gave up. The introduction of monthly ‘inclusive screenings’ at a local cinema, however, offered me the confidence to try again.

The first inclusive film we attended was one of the Harry Potter films. Although there were still some challenges for Dylan, leaving the lights on low (rather than viewing in complete darkness) and lowering the sound were adjustments which seemed to make him more comfortable. It helped that it was a film which Dylan knew  – and it certainly helped me to know that people would understand if we needed to leave. But, I told myself, I might not feel the need to leave if Dylan was noisy as he wouldn’t, presumably, be the only one. When he stayed in the auditorium until the end of the film that day it felt like my best birthday ever (it was my 50th).

Canal day 006Having spent the last four years taking Dylan to inclusive cinema he is now able to access regular screenings. The first time I tried this it was motivated by self-interest: The Borrowers had just been released and I wanted to see it. It was half term and the cinema was full with school children. I’d managed to get Dylan’s preferred row and seat (right hand side, four from the back, far aisle) but I felt hemmed in and anxious as the trailers started. Luckily it was a Studio Ghibli production which I think helped Dylan through an unfamiliar film in darkness with surround sound and chattering children. At inclusive cinema screenings I had been modelling appropriate behaviour, encouraging sit and ‘sshussh’. It turned out I had coached Dylan well; he pointed to a noisy child seated nearby and said ‘shouting! sshussh!’.

Since then we have been frequent visitors at a range of cinemas. Some trips have been more successful than others and I don’t ever quite relax; I have to stay alert to Dylan’s impact on others as well as to how comfortable he is. One of the things Dylan always does at the end of a film is run to the front and sprint from side to side of the auditorium repeatedly. It is a stim, triggered by the rolling credits which he loves (at home, with no space to run, he flaps instead). At busy regular screenings – especially when there are small children – I have to manage the timing of Dylan’s run to the front  (if people haven’t noticed there is anything different about us, this blows our cover). And because this can be quite stressful, we still go to (and prefer) inclusive cinema.

Relaxed Theatre

Stratford 038One experience which has not been a stepping stone to mainstream events was a ‘relaxed performance’ of Peter Pan at the RSC in Stratford-Upon-Avon last year. Having had some positive experiences of accessibility initiatives an advert for the production caught my eye. Dylan is a serious fan of Peter Pan and it seemed a wonderful opportunity. I loved the idea of being able to take Dylan to the RSC in the same way that I might take my daughter; this was my dream of inclusion.

So, with friends, I booked tickets for a  matinee performance. Dylan and Ella coped with the production but it was challenging for Dylan. The performance did not appear to have been significantly adjusted in terms of, for example, lighting or sound and there weren’t any obvious time-out areas. The play was also heavily language-based and only loosely-based on the original; there is, of course, nothing wrong with this but I hadn’t grasped from the available information that it wouldn’t be suitable for Dylan.

The audience was also challenging for Dylan; the event had attracted school parties and the theatre was buzzing with chattering children. As the performance had a relaxed approach to audience noise this low level hum continued. Dylan tends to vocalise so a relaxed approach to noise was ‘a good thing’ in a way; however, he finds lots of language distressing so spent much of the time with his arm clamped over his head, stoppering his ears. For some autistic theatre-goers this environment would perhaps be tolerable but for Dylan it was possibly worse than a non-relaxed performance. Also challenging was a ‘Question and Answer’ session immediately following the close of the play. Not only had I been unaware this was scheduled, as there was no break between the curtain call and questions we found ourselves trapped in the theatre in what was for Dylan an inappropriate session.

Friendly West End

The only challenge at an autism-friendly production of The Lion King at The Lyceum in London’s West End the previous year had been that it came to an end at all. This was Dylan’s first experience of a live performance and it set the standard. As I recall, the theatre had worked with the National Autistic Society to develop the performance and certainly for me one of the key features of the event was the way in which the theatre staff appeared to be autism-aware.

Before the performance, for example, I witnessed what could have been a difficult incident in the sweet kiosk handled with sensitivity by a theatre employee. At the interval I was in a long queue for refreshments with Dylan, fretting a little about whether he’d understand that we would be returning to our seats with our ice-creams (not familiar with the interval concept he had insisted on gathering up our bags and coats). I overheard a man I assumed was the event manager discussing the length of the queue with members of staff and deciding that there would need to be a delay re-starting the show; everyone had to be served, he said. On balance this seemed like a good decision to me; an unplanned adjustment based on understanding and good sense.

Debris from the ice cream queue was scattered across the cinema after the interval but staff remained relaxed and smiling. Several melting children were carried in and out by parents; doors were quickly opened for them and those in need were made welcome on bean bags in a foyer (where some families, inevitably, spent the entire show). Our children could make whatever noise they wanted and move around if and as they wished. One member of the cast (Scar, I think) took off his mask and explained to the children that he was only a man pretending to be a lion. The show itself (unadjusted in terms of content and length) was magnificent. It had never occurred to me that I could take pleasure in this; I might not be interested in Harry Potter on the inclusive silver screen but The Lion King in the friendly West End: well, that was really something.

And finally

2014-02-22 14.58.32After writing this I’ve realised that understanding goes a long way to making mainstream settings feel inclusive and that special initiatives don’t necessarily make Dylan feel comfortable. I’m also reminded that language-based arts are challenging for Dylan and that the most inclusive arts tend to be visual. Perhaps not surprisingly, cinema is one of the most readily-adapted art forms where small adjustments can make a significant contribution to the quality of someone’s life.

While this post doesn’t respond to the precise challenge set by Tinc I hope that readers from the museum and education sectors, as well as those with an interest in autism, have found it illuminating. I’ve certainly found it helpful to write – thank you, Tinc!


The photos were taken by me on visits to Weston Park Museum, Kelham Island Museum, Magna and The Millenium Galleries (all in or near Sheffield). Other photographs were taken in the Children’s Library, Showroom and Cineplex in Sheffield and outside the RSC in Stratford-Upon-Avon and (with Ella) at The Lyceum in London.

On Not Putting An ‘X’ In A Box: the disenfranchisement of the learning disabled

Today is polling day in the United Kingdom; people over 18 in England, Wales, Scotland and Northern Ireland will be putting an ‘X’ in a box on a ballot paper. Some people will not be able to vote in the Election, however, even if they are registered: Dylan, for example. It’s not that Dylan isn’t entitled to vote – he has the same right to participate as other adults – but entitlement does not necessarily translate to participation.

One Person, One Vote

WP_20150506_21_02_29_ProThree years ago, when Dylan became eligible to vote, I telephoned a Government helpline for advice on elections and the disabled. Dylan, I was told, could have assistance reading the ballot paper but would have to go alone into the voting booth. I explained that Dylan would not be able to do this; he would need support to allocate and insert an ‘X’ on a ballot paper. Dylan, I explained, could choose between concrete objects which are meaningful to him but would not be able to discriminate between candidates on a ballot paper. This does not, of course, disqualify a person from voting; you don’t have to have a learning disability to be unable to distinguish between politicians. As the organisation Every Vote Counts note:

Like anyone else, someone with learning disabilities has the right to choose who they want to vote for by any criteria they like. It is not up to anyone else to judge if reasons for choosing someone are valid or not. Equally, the decision over whether someone votes or not must be theirs and theirs alone. Carers and support workers are not allowed to make decisions on behalf of the person they care for when it comes to voting.

While it is important to support adults with learning disabilities to identify their own voting preferences, those with significant support needs may be disenfranchised by the stipulation that carers cannot vote on their behalf. Certainly this is the situation that emerged in relation to Dylan. If Dylan couldn’t vote in person, it was suggested when I sought advice, I could request a postal or proxy vote for him. As the Government advisor talked me through the requirements, however, it became clear this was no solution.

Whether voting in person, by post or by proxy, a vote must be cast for the candidate that the person with a learning disability chooses. If that person is unable to engage with the political process in order to do so, this clearly raises challenges in terms of exercising the right to vote. Furthermore, Section 29 of the Mental Capacity Act (2005) states that a person can only appoint a proxy if they have the mental capacity to do so. I can’t see how Dylan can use his vote, I said to the woman on the helpline. It was possible, she suggested, that carers in a similar position to me were claiming proxy votes anyway – but it was up to me whether or not to apply for one, she added.

Two People, Two Votes

independent.co.uk2It is not the case, of course, that because Dylan cannot engage with the voting system he does not have political interests. As a vulnerable adult, Dylan has a stake in policy decisions about disability benefits and the organisation of health and social care. More specifically, he has an interest in public transport systems; inclusive sport and leisure facilities; the maintenance of public parks; and the availability of high quality care workers. These are the things which matter to Dylan and which make a difference to the quality of his life. Because Dylan has an interest in the provision of these local services, on the run-up to council elections (the first vote Dylan was eligible to participate in) I thought about applying for a proxy vote for him. I wasn’t comfortable with the implications, however: firstly because I would have to lie about Dylan’s ‘capacity’ in order to be allocated such a vote and secondly because if it were allocated I would have to vote on his behalf.

news.bbc.co.ukIf I were to vote on  Dylan’s behalf, I asked myself, would I cast his vote the same way as my own? Our interests are shared, after all; an inclusive society which protects the vulnerable and prioritises health and social care. Surely this  would mean two identical votes: ‘one person, two votes’? Or would it? What Dylan needs above all is effective local representation: a confident MP who knows the system, has leverage and can advocate for him. We live in Sheffield Hallam, Nick Clegg’s constituency. Although Clegg’s role as Deputy Prime Minister could have reduced his effectiveness as a constituency MP, that has not been my experience in relation to Dylan. Actually, Clegg was rather good when I asked for his help with a funding problem. Of course I cannot be sure that the swift resolution was due to Clegg’s intervention – maybe it was coincidence – but other parents of autistic children and adults in my constituency have reported similar experiences. I have never voted Liberal Democrat myself but if I were to vote on Dylan’s behalf I might. It is thus possible I would argue, when acting on behalf of someone else, to be ‘two people, two votes’.

Two People, One Vote

independent.co.ukFrustrated by Dylan’s situation, on the run up to today’s election I tried a different approach. I have Power of Attorney for Dylan: were there special arrangements for those with such authority, I asked?  As it turns out, there are, though this proved to be no solution either; as with vote by proxy, the person for whom you hold Power of Attorney has to authorise you to vote for them.

Today, therefore, Dylan and I are still ‘two people, one vote’. I assume that other adults whose learning disabilities mean they are not able to appoint a proxy are in a similar position. In addition, adults with learning disabilities who could vote with appropriate support may be unable to access this. Effectively, this disenfranchises adults with learning disabilities.

An entitlement to vote is not sufficient; it must be possible to exercise this right to vote. The nature of Dylan’s disability means that he requires someone to act in his best interests. While a vote on his behalf could be seen to threaten the principle of ‘one person one vote’ this does not, as I have argued here, have to be the case. It should be possible for the interests of adults with severe learning disabilities to be represented within a democratic system. A simple form, for example, could require those casting a vote on behalf of someone for whom they have Power of Attorney to include a brief rationale. Those of us who support adults with learning disabilities are quite used to justifying the decisions we make on their behalf; explaining a vote would not be excessive burden.

Alternatively, the government could just trust us.


Every Vote Counts provide information and support to people with learning disabilities and their carers.


The composite images of the three main party leaders are from The Independent and the image of Nick Clegg is via bbc.co.uk

A Really Inclusive Engine: autism and the steam train

Faster than fairies, faster than witches,
Bridges and houses, hedges and ditches,

inclusive engines 003Like many families living with autism we spent hours when Dylan was young listening to Thomas audio tapes, watching Thomas videos and reading Thomas books. Dylan had a variety of engines and Thomas paraphernalia and while he didn’t play with these he did carry the engines around with him. They also proved really useful during Dylan’s home education programme (about more of which in a future post).

Because of Dylan’s discomfort in noisy and crowded locations we didn’t often take him to public events when he was young. However, we made an exception for the Thomas the Tank Engine fun days which are a regular feature of schedules at train stations all over England. I’m not sure how much Dylan enjoyed these – I certainly found them stressful – but if there were any outing that was likely to be a success with Dylan, we told ourselves, then it was these.

And charging along like troops in a battle,
All through the meadows the horses and cattle:

Later, during family holidays, we took Dylan for rides on regular steam trains. I wasn’t sure whether these would be of any interest without the storybook engines. However, the trips were a big hit with Dylan. While the cartoon faces and colours are undoubtedly part of Thomas’ charm, at the heart of Dylan’s passion appears to be a deep love of steam.

Accommodating the various interests of children within a family can be complex when living with autism. While we were a two parent family Dylan and my daughter could do separate supervised activities. As a single parent, however, this was no longer an option. It took me a while to realise that what made one of my children very happy might make the other very unhappy.

The photograph I use on this blog of Dylan and I on a tandem was taken by my daughter while we were on holiday in Norfolk in 2010. I had proposed a steam train trip which I knew Dylan would like. We were about to set off to drive to the railway when my daughter announced that she didn’t want to go. Why did we always have to go on a steam train when we went on holiday? She was fed up with steam trains. She had no interest in them. She didn’t even like steam trains. The compromise we arrived at that day was that we would hire cycles and ride on the track that ran alongside the steam train so that Dylan would have the excitement of the passing trains while my daughter had the joy of cycling.

All of the sights of the hill and the plain
Fly as thick as driving rain;

The Norfolk revelation was important because it reminded me that while I might be prepared to indulge Dylan’s passions others might not be so tolerant. At that stage steam trains were certainly something which I tolerated rather than enjoyed: Do you think that I like them? I had asked my daughter, I go on steam trains for your brother.

This was actually taken on a later trip - but it was dark like this the first time!

This was actually taken on a later trip – but it was dark like this…

I felt some sympathy with my daughter’s position when, the following year, I found myself before dawn one Saturday morning on a cold, dark platform at our local railway station. Dylan had started collecting flyers advertising steam train trips and leaving these for me on my desk. He had been very persistent with one leaflet. However many times I moved it into a drawer or onto my pile of ‘maybe papers’, Dylan would retrieve and replace it at the centre of my desk. Eventually I gave in and booked two tickets for a day trip.

The train was due to depart from our local station at 6am and return at 10pm. The destination was Scarborough, a seaside resort on the Yorkshire coast where we would have two or three hours to look around. The rest of the time would be spent on the train. On the platform that morning I eyed the groups of waiting men with their thermos flasks, goggles, manuals and gadgets and felt decidedly out of my comfort zone. Apart from a range of practical worries about how I would manage the day I was dreading having to spend such a long time doing something I wasn’t interested in.

And ever again, in the wink of an eye,
Painted stations whistle by.

The trip to Scarborough went well; in fact, I told a friend later, I’d sort of enjoyed it. As well as groups of men like the ones I’d spotted waiting on the platform, I discovered there were couples on the train. I thought that some of the women were probably there as accompanying partners but, I told myself, that was what I was (except I was accompanying a son instead of a husband). On that trip, Dylan and I were seated with a pleasant couple who inducted us into the culture of the steam train. They were friendly and supportive and gave me the confidence to look for other ways I could extend Dylan’s interests (you can read a bit more about that here).

Last year Dylan and I took another steam train, this time to Carlisle. It was a longer journey with less time at our destination but I approached the trip with more confidence. This time I’d brought the weekend newspaper, telling myself that while I didn’t share Dylan’s interest in steam trains, it was relaxing for me. I found our seats and was organising Dylan when a man charged by, knocking the coffee I was holding out of my hand and the contents all over me and other passengers. A man nearby became very upset on our behalf, complaining at the man who had barged me and wanting to find and reprimand him. However, I had seen something in the hurrying-man’s manner: Oh it’s fine, I said – I have some tissues. Don’t worry.

As the trip got underway I listened with interest to the men with whom we were seated. Four were together as a party, celebrating a birthday, and two were travelling alone. They were all extremely kind to us and good with Dylan, chatting and sharing their food. As the miles passed, the men relaxed in our presence. I don’t think I’d had an opportunity to observe men together in such a naturalistic setting before. Being alongside this group felt like a rare privilege in that it gave me an eye into the world of male friendship. I observed among this group of men (against all stereotypes) examples of emotional communication, intimacy and tenderness. I remembered the group of men I had eyed on the platform a couple of years earlier; my experience this trip, I realised, was giving me a different way of thinking.

Sitting alongside this group of men also gave me a new way of thinking about steam trains. As I listened in to their conversation I started to notice things I hadn’t previously. The tick tick ticking of the engine as it laboured up the inclines. The beauty of its carriages curling around the iconic Ribblehead viaduct. The role of water and pathway stops. The significance of the different classes of engines. The precision of the timings marked on the route maps we had been allocated. The beauty of the livery. And then (with my poet’s head) the scattering of deer and horses as we plunged through their world, the play of steam on the carriage windows and a memory of my Grandma telling me that steam engines sing alamamoosh alamamoosh.

As Dylan and I were readying ourselves to leave the train and saying our goodbyes, one of the men told me that they had moderated their behaviour a bit in my presence – they’d had a system of kicking each other under their table if they thought anyone out of line. I thanked them for that, and for the tea, biscuits and entertainment. I had, I told them, rather enjoyed the trip and been touched by their friendship.

 Here is a child who clambers and scrambles,
All by himself and gathering brambles;

 It’s not usual to comment so openly to strangers. However there is something about the steam train, perhaps, which encourages a sense of community. The idea of community felt particularly relevant on the next trip Dylan and I made. At Easter this year we travelled to Newcastle with our friends the Corbetts (who appeared in my earlier post about a weekend in London). This time the train was longer than on previous trips and as we were seated in the back carriage the sense of being steam-hauled was less powerful. We were too far from the engine to hear the ticking or to witness the dance of steam outside the window. The only clues that our trip was special were the vintage carriages we were travelling in and the speed of the train.

Easter 2014 002At one of our pathway stops we were overtaken by a diesel, on its way to Newcastle. We could have taken that service, I said, and had longer in Newcastle. But the people on that train were commuting, Julie pointed out; they were on their way to somewhere else and the train was simply a means to an end. For us, the journey was the point, not the destination. We were being hauled by the Duchess of Sutherland 46233 (the second time for Dylan and I). When we arrived at Newcastle we would leave some of our belongings on the train, unlike the commuters on the diesel service, because we would be returning to the Duchess. We weren’t concerned to get home by the quickest service but to continue our journey on the 46233. We had a shared interest and purpose. We were a community.

Easter 2014 026While I wasn’t wishing the day away I was looking forward to the journey home. Will they put the engine on this end of the train on the return journey? I’d asked one of the stewards as we left Chesterfield. I was looking forward to having more of a sense of steam, I explained. We’ll have to see how she turns at Newcastle, had been his non-committal reply. So I was delighted to find, when we gathered on the platform for the journey home, that the last carriage had become the front carriage for the return trip and that we would be directly behind the engine.

Easter 2014 028As we left Newcastle Dylan went into a trance as the white steam rubbed its back against the window pane and the ticking of the engine lulled us. I sat back with a book of poems and bag of almonds thinking life did not get much easier or pleasanter than this. But after less than an hour, just outside Durham, we came to a halt. The 75 year old Duchess, it seemed, had run out of steam. We eyed the anxious-looking stewards and listened in to requests for technical explanations from passengers with gadgets. None of these, however, were going to lessen the impact of the word ‘rescue’. A diesel had been requested, it seemed, and was on its way to us from York. We would be steam-free for the rest of the journey and stationary for at least the next hour.

We were glad that we had saved our picnic for the return journey. Being stranded on a broken steam train is not the best formula for a party which includes two autistic adults, at least one of whom has a love of steam and an inability to wait. We unpacked the picnic and I pretended to Dylan that this was a scheduled stop so the drinks didn’t spill. What I noticed was how accepting everyone was of the breakdown. No one was complaining that we weren’t continuing our journey by steam. I didn’t hear anyone moaning that we would be later than scheduled arriving home. There was none of the hoo-ha you get on a regular service when it breaks down. Just as we were a community in our outbound joy, so we were united in our disappointed return. The diesel which rescued us was, Julie observed: a really useful engine.

 Here is a tramp who stands and gazes;
And there is the green for stringing the daisies!

If I’d had the crystal ball I sometimes wish for and been forewarned that the train would break down, that we would have to wait for nearly two hours to be rescued, and that we would return by diesel instead of steam I would, of course, not have gone. However, I learned (again) that sometimes we cope with the unexpected better than we imagine. Dylan managed the wait and rather enjoyed the trip home. He was bouncing up and down on his seat as we came through Ferrybridge, which could have been because the diesel was hitting some pretty cool speeds but could equally have been due to these.

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One of Dylan’s special interests is cooling towers. We had some in Sheffield which Dylan loved but the council knocked them down and now Dylan only has photos of them. His face was a picture as we passed these in the early evening sun. He strained in his seat to watch them retreating as we passed. Here was some steam compensation, then, for our train’s lack of it. I’m not entirely sure I understand the attraction of cooling towers. I do, however, finally understand the love of steam: Alamamoosh alamamoosh I whispered to Dylan, conjuring his Great-Grandma’s engine in his ear.

 Here is a cart run away in the road,
Lumping along with man and load;

 I haven’t forgotten the man on the Carlisle train who bumped into me. It transpired he had been rushing to secure prime place at a carriage door. Standing at a train door with your head out of the window is, I later realised, an essential way of travelling for some passengers. I saw the man again on our arrival home that day, his face blackened from soot except for two pale rings where his goggles had been. What I’d glimpsed in my earlier encounter with him was his connection with Dylan and myself. Some people were on the train, I realised, to answer a need which does not always take account of social etiquette. Dylan would have bumped past someone too if he had something particular in mind. So, in fact, might I.

DSCF1474I’ve not embraced the steam experience enough to buy goggles and give up my seat but it’s true to say that I look forward to the trips now as much as Dylan. I doubt this is something I would ever have discovered without Dylan. I like that our trips by steam train have become a shared interest and I love that this is a result of Dylan communicating his passion to me. It makes our relationship feel more equal; we can learn from and inspire each other. Now I think of these days out as trips on the train of inclusion, the full spectrum shining quietly through the carriages.

 And here is a mill, and there is a river:
Each a glimpse and gone for ever!


The italicised extracts are from R.L. Stevenson’s poem From a Railway Carriage. The poem is in two eight-line stanzas which I’ve split into couplets and run in sequence through my text. I’ve taken the poem from my first ever poetry book, Poems Old and New Book II: Magic Words, which was compiled by H.N. Alton and published by The Grant Educational Co. (London) Ltd in 1941. The book belonged to my mum before me (she was given it for Christmas in 1942) so there is a link back to her mother (my grandmother) who appears in this blog post. In my memory Grandma told me that trains say alamamoosh after reading Robert Louis Stevenson’s poem to me from this anthology.

A Weekend With Lions: autism and risk

Dylan, like many autistic people, likes his routines; he seems to find the pattern of attendance at his day centre reassuring and to enjoy the rhythm of his regular activities. It’s not just the autistic person who can feel comfortable with routine though – parents and carers can also fall back on tried and tested activities rather than risk something new.

My trips out with Dylan habitually involve a back-up plan in case Dylan becomes distressed or a situation becomes unsafe. In some ways this is not dissimilar from the process we might go through when supervising an activity with any young person. With Dylan, however, I have to also consider when to abandon a trip or ask for help. As a single parent I am conscious of the extra challenge this presents. I don’t have family I could call on and I would not expect friends to be on hand if I found myself in a situation where I needed support. The implications of this are that I either trust that in such a situation there will always be a generous member of the public around or I don’t put myself and Dylan in a situation where we need help. For some parents of autistic children, then, routines appear attractive in that they can reduce such risk.

 The Calculated Risk

dscf1140This isn’t good enough though is it? Apart from the fact risk can never be entirely eliminated it is not healthy to live life so fearfully. I have made passing reference to the impact of fear on my caring for Dylan elsewhere (see, for example, this post). While I realise that such feelings are motivated by wanting to keep Dylan safe, I am aware that this is not something I can allow to get the better of me.  Curiosity and novelty are as much a part of learning for autistic people as for non-autistic people; if I want Dylan to reach his potential then I need to develop the confidence to support him into new situations so that he can discover things  about himself and the world.

Happily, something comes along every so often which offers just the right degree of novelty.  In summer 2011, for example, I took Dylan on a steam train trip from our home city to the coast. Although to some people this may not seem like much of a risk it required me to think through contingencies.  How would Dylan cope with a 12 hour trip away from home without a car (many families living with autism depend heavily on private vehicles to manage outings)? Would the noise of the engine bother him? What if Dylan didn’t like our seats or the carriage was over-crowded? How could I help him to understand that we were only getting off the train at our destination station for a short while? What if Dylan wouldn’t get back on? And (crucially!) how would I go to the toilet on the train given that Dylan can’t be left unsupervised?

DSCF1137On the day of the trip we happened to be seated at a table with a couple who, although they didn’t use the term autism in connection with their grown-up son, had an understanding of Dylan which I usually only observe in other parents of autistic children.  The trip was a success and passed pleasantly both directions with our carriage companions intuitively understanding Dylan  and even supporting him while I nipped to the loo and to buy refreshments. At some point our companions enquired if Dylan was interested in zoos.  Their son, apparently, had developed a passion for them which had taken him all over the world. This would later transform my small risk of a steam train into the scary prospect of lions.

Lions and Tigers

Chester Zoo 2011

Chester Zoo 2011

After the trip I thought about the couple with the zoological son and decided to try an outing to a zoo (Dylan had been on family visits as a toddler but not since). I did quite a lot of preparation in advance of our first visit but with the wrong animal. My prediction had been that Dylan would like monkeys so on the run up to our first trip (to Chester Zoo) I spent a lot of time talking about them with him, waving my arms around and hooting, and borrowing monkey-themed resources from the library.  As it happened, Dylan wasn’t overly bothered about the monkeys. The lions however – well that was another matter. Our entire day at Chester  Zoo – and every zoo we have visited since – involved us circling the big cats.

Private Zoo, Kent 2012

Private Zoo, Kent 2012

A marvellous thing about zoos is that once you’re inside they are traffic free and safe. I’ve discovered that I can reduce the level of supervision I would normally give to Dylan so I tend to ignore the map and leave the route to Dylan to negotiate; always, and almost uncannily, he leads me to the lions. Zoos have became a passionate interest for Dylan and we have spent the last few years systematically visiting them in the way the couple on the train probably did with their son when he was younger. This has been fantastic for Dylan; it has supported his language development and his interests. As well as leaving flyers of trains on my desk for me to find, he now periodically leaves me the hint of a lion picture.  Holiday destinations in the last few years have been carefully selected to be within reach of a) a tandem cycle hire b) a steam railway and c) a zoo.

Edinburgh Zoo, March 2012

Edinburgh Zoo, March 2012

I realise this is beginning to sound more like routine than risk – and it’s true that with Dylan things that begin risky quickly become routines if they prove popular. But the way in which the lions posed an additional risk was that in due course we had visited all the zoos which I considered to be possible. This included Edinburgh Zoo which, although in a capital city in another country, had somehow seemed manageable. What we were left with, if we were going to continue, were far more challenging locations. Our tour of zoos, which had started from a chance encounter during the comfortable risk of a steam train, had led us to London.

 The Capital Risk

Edinburgh Zoo

Edinburgh Zoo

Did I fancy taking Dylan and Ella to London Zoo? Julie asked. I had met Julie at a poetry festival the previous year. She had an autistic daughter only slightly older than Dylan and so, through our shared interest in poetry and autism, we had kept in touch. Dylan and Ella had met a couple of times and while they didn’t pay much attention to each other there had been encouraging displays  of tolerance. Ella had been to London several times previously but hadn’t been to a zoo before, so that would represent something new for her.  Dylan, by contrast, had been to lots of zoos and would be comfortable once he was inside London Zoo – for him it was negotiating the city which would be the challenge.

I lived in and around the capital in the 80s and 90s and am quite comfortable in London. While Dylan was still only a baby, however, I moved north; although we visited friends in London for a few years afterwards, after the autism diagnosis visits with Dylan stopped. There seemed to me to be no good reason to take Dylan there; he doesn’t like crowds, hates noise, isn’t interested in London’s cultural attractions and has no road or traffic sense.  In fact, Dylan likes the routine of home and to be out walking in unpopulated countryside. So while Dylan was growing up I made quick forays down to London alone while he was in respite.

Trafalgar Square

Trafalgar Square

My initial reaction to Julie’s question was that it was impossible; there was no way I had the confidence to manage Dylan in London by myself. However, Julie was encouraging, reassuring me that she and her partner would be there if I needed support with Dylan and that their experience with Ella was that it was fine, providing you calculated the risks. What this involved, they explained, was doing things which were familiar such as eating at favourite restaurants and using the buses. Getting around the city was one of my key concerns; I had visions of Dylan going into meltdown in the deepest underground station and refusing to get on a train or take an escalator back up to street level. Although I knew walking routes across the city, the hubbub of the crowds and traffic didn’t make this a good option for Dylan, so not using public transport, I predicted, could create a problem.

Sometimes I can talk myself into taking a medium-sized risk by flirting with an even bigger hazard.  Noticing an advert for an Autism Friendly production of The Lion King in the West End I was seduced by the idea of turning the proposed trip into a lion-themed weekend. Shall we take Ella and Dylan to see The Lion King while we’re there? I asked Julie.

Tunnel Vision

London Lions 048

London Zoo

So at Easter last year we travelled to London from our respective cities for the weekend.  I had no doubt that Dylan would enjoy the zoo and he did, indeed, appear to (though I suspect it wouldn’t make it into his top three zoos). What I was certain Dylan wouldn’t tolerate, however, was the theatre. Dylan had not been to the theatre before and  I was sure that he wouldn’t accept the changes which a live production would involve to a story he already knew; he has been watching the Lion King DVD every week for years and I was quite prepared for Dylan to be furious at any deviation from the film version.  I was, however, prepared to risk trying Dylan at the theatre given that it was an Autism Friendly production and I would have the support of Richard and Julie. These two factors – an inclusive production and the encouragement of friends – were absolutely key to me taking the risk

Dylan and Ella outside the Lyceum 2013

Dylan and Ella
outside the Lyceum

It was more than worth it.  Dylan, against all my predictions, stayed for the full show. It was a wonderful production (it had never occurred to me that I might enjoy it) and Dylan certainly seemed interested; it might not have been the same as his DVD, but he recognised characters and songs and paid attention to unfamiliar aspects of the show. Because The Lyceum’s production of The Lion King was the first inclusive theatre production we had attended I didn’t realise that it was the Gold Standard.  However, having recently taken Dylan to another theatre production,  I would describe The Lion King as exemplary  Autism Friendly provision. I’m glad that this was the case as it meant that Dylan’s first experience was a positive one, something which has been very enabling (I will reflect on the growth in inclusive cultural events in a later post).

The success of the theatre visit astonished me. Equally astonishing, though, was Dylan’s reaction to London itself. It turned out that he loved the crowds and traffic. He walked the streets of London like a native, leading me with delight to shops and cafés. Dylan quickly learned the route back to our hotel and settled himself as if at home. Most striking of all was his quick interest in riding the underground. All my pre-visit fears were unfounded; Dylan adored the Tube trains so much that every time we walked by the mouth of an underground station he tried to pull me in.

Once I had got over my surprise I understood why this might be. Dylan has always had a fascination for tunnels, something which I think stems from a scene in Thomas the Tank Engine where Henry won’t come out of the tunnel in case he gets his paint wet. On regular trains I had noticed that Dylan makes a particular hand signal whenever the train passes through a tunnel;  turning them palm up, Dylan cups his hands gently until we emerge into the light. If I’d have thought a little more about Dylan’s love of tunnels, I might have realised that the capital would be a huge hit with him. Imagine it: one great network of tunnels under the city with entry points wherever you walk and escalators waiting to take you up and down. It must have seemed like a giant fun fair.

Wizards and Lions

lion yellow brickIn the Wizard of Oz it is Lion who sets off down the Yellow Brick Road in search of the Emerald City to ask the wizard for some courage.  I think that out of that quartet of friends – Dorothy, Tin Man, Scarecrow and Lion – I am most like Lion. When  I watch the Judy Garland version of the film now I am struck by the fact that the actors who play the farm hands on Aunt Em’s Kansas farm are the same actors who play the characters in search of what they lack. I don’t think I noticed this as a child. Now I enjoy the way that it reinforces the idea that we actually already have the things we think we are most in need of; that our intelligence, love and courage are not qualities that exist somewhere outside of us, but are right here in our own backyard.

lion courageActing with courage to raise a child or support an adult with autism is something that we can all do if we believe that we can; lion had courage all along, he was just sometimes a little afraid of himself. What he did need in order to realise that the courage was within him, though, was friends to help him along the way. Parents and carers of children with autism sometimes need people to support them as they  learn to take new risks. I have done a number of things with Dylan in the last year (including driving alone with him to France which you can read about here) which I doubt I would have contemplated without the weekend in London.  I’d therefore like to dedicate this post to the Corbetts for their encouragement and friendship that weekend and since.

London Lions 090

You can catch up with Ella’s travels here: www.facebook.com/pages/Ellas-Travels/383690745077645

Autism And The Double: Dylan’s duplicates

I developed an interest in ‘the double’ years before Dylan was born. As well as enjoying double narratives in literature and mythology I was fascinated by twins. For a while I thought I had a twin pregnancy while I was carrying Dylan and my husband and I used to refer to our daughter as ‘the twins’ (in utero and out) although we knew from a scan that she was a singleton.

imagesD16BU1IXSoon after my children were born I came across a study of handedness and pregnancy; left-handed people, the study proposed, could be ‘surviving twins’. According to this theory a significant number of pregnancies begin as multiple pregnancies but in the early weeks, undetected by us, one of the embryos fails. The impact on the surviving twin of hormone levels in the womb, the research suggests, manifests itself through handedness. Both my children are left-handed although neither I nor their fathers are, and I have sometimes wondered to myself whether they are surviving twins.

I’m not aware of any research looking specifically at handedness in autism but it would be interesting to know if the incidence of left-handedness in the autistic population is higher than in the general population (I’ve mused on this issue previously in relation to visual and linguistic processing here).  If it were the case then I can imagine that ‘surviving twin syndrome’ could be an interesting line of enquiry as part of research into the biochemistry of autistic neurology.

Doing The Two’s

I’ve been thinking about the double recently while pondering one of Dylan’s behaviours which I call ‘Doing the Two’s’.  This happened most recently last weekend when I took Dylan to a music shop to choose a new CD.  I usually buy music, films and books for Dylan online because I know what is likely to happen if I give him a choice in a shop – and, indeed this is what happened on Saturday.

double sting 002Dylan loves Sting’s Fields of Gold but, as you can see, he already has a copy. He also has the album on his i-pad so this is actually his third copy of the CD. The shop I took Dylan to is a music-lover’s paradise with rows and rows of stock but Dylan somehow managed to locate the Sting CD and all my attempts to divert with other suggestions failed. I wouldn’t always give in to Dylan’s desire to buy a duplicate of something but on this particular day, for a variety of reasons, I did.

I have been having battles with Dylan about NOT buying duplicates for a very long time.  I have a memory of Dylan as a toddler clutching a video of Fireman Sam at a church bazaar while I tried to persuade him to put it back because he already had it. Although it must have been priced at less than 25p I didn’t see the point in buying Dylan something he already had and was prepared to tough this one out with him for the principle. I carried Dylan screaming from the church hall, telling myself the battle would be worthwhile as Dylan would learn that he couldn’t buy the same thing twice.

Except he didn’t. There have been  many incidents since.  In shops, at charity stalls and in libraries, for nearly 20 years, I have been saying:  No Dylan put it back: we’re not doing the two’s.  I have repeated my explanation to shop keepers and stall holders repeatedly:  Dylan doesn’t understand – he picks up objects because he recognises them – he has one of those already. No we don’t want to buy it thank you very much.

Except that Dylan did. Only recently have I realised just how passionately Dylan wanted to buy all the duplicate items I have refused him over the years.

Dylan’s Duplicates

In the new year, while Dylan was in overnight respite and I was having work done on his bedroom window frames, I took the opportunity to spring clean the room. Dylan is tidy; he keeps his bedroom neat and all his books, DVDs and Videos are in a particular order on his shelves. He knows where everything is. If I move something, or suggest a change in how his things are arranged, Dylan will usually move them straight back. Occasionally he will accept a minor suggestion, however, and he seems to like it when I do a major reorganisation of his room. As is common with autism, it’s the slight alterations to order that can be difficult for Dylan rather than the big changes. On this particular day I moved the bed from one wall to another, involving a switch with some book shelves.  While cleaning up I decided to look through the books to see if there were any I could persuade Dylan to take to the charity shop. I was shocked by what I discovered.

shutteres 015As you can see, Dylan has been Doing the Two’s pretty effectively (and sometimes Doing the Three’s).  I was surprised that Dylan had managed to get duplicate copies of books but even more shocked by the systematic nature of these acquisitions. As  I spread them out on his carpet I realised that there was a pattern to his acquisition: they were Disney books, primarily, and they were from particular book series’. One of the reasons I hadn’t noticed the duplicates before is that Dylan doesn’t keep them together but rather has a system for spreading them across his shelves. This isn’t by publisher (i.e. series type) or title (i.e. all Pinocchio’s together)  but seems to be by some other classification system which Dylan has developed. The fact that there was an organising principle to Dylan’s Doing the Two’s turned it from simple acquisition to collection.  My son, I realised, was a book collector.

shutteres 012As I sat flabbergasted on his floor another realisation hit me.  I hadn’t bought these books for him; in fact I had been the one thwarting Dylan’s book collecting activity. So where had he got these books from?  I leafed through the books. They weren’t library books.  Some of them looked worryingly like brand new copies. Others were torn and raggedy and written in. I found a girl’s name inscribed in one of them:  This book belongs to Emily. Oh dear. With rising suspicion I remembered how, a couple of nights before, Dylan had arrived home from his new Day Centre and scuttled straight upstairs with his pack on his back, instead of leaving it in the room for me to read his home-school liaison book. Could my son be a book thief?

shutteres 009I’m pretty sure that Dylan must have been collecting books either from his Day Centre or from his Respite provider, both of which have small libraries. Perhaps some of the books were taken from school before he left last summer. I’ve no idea how long the collecting might have been going on.  I’m fairly certain Dylan hasn’t been taking books from shops – not while in my care anyway. But Dylan is like lightening; if there’s something motivates him, Dylan has thought about, planned and executed it before you can say Peter Pan.

Why (and Why Again)?

Since my discovery I’ve been pondering the possible reasons for wanting duplicate copies of an object. I started by asking myself what I had duplicates of. I came up with this list:

  • I buy multiple copies of Jenny Diski’s Skating to Antarctica because I love it and like to give it to women friends
  • I have twice mistakenly bought duplicate copies of a book I already had
  • I have multiple copies of Sylvia Plath’s Bell Jar but in a range of different editions
  • I have bought a spare copy of my favourite version of Roget’s Thesaurus as it is out of print and difficult to source
  • I had to re-buy Oasis’ What’s the Story as mine got stuck in my car stereo for a while

Like my son’s, my duplicates seem to involve books. If I look at my motivation for acquiring second copies of something, with the exception of the third item in the list (i.e. error), it seems to be love – though often love is coupled with a fear that the thing I love may be broken or lost.

That reminds me of a dolphin beanie baby called Echo which my daughter loved best of all her collection. One day Echo was lost. My daughter was heart-broken. We told her Echo would turn up again – he would be somewhere. But he didn’t and my daughter continued to be miserable. One day my husband and I agreed that we would buy another Echo. We placed it with my daughter’s toys for her to find the next day. I think my daughter was a bit suspicious; Echo looked unusually clean. But she was satisfied until one day, playing with Dylan’s garage, the original dolphin was discovered in the car wash.  I can’t remember quite what white lie we created but whatever it was seemed to satisfy and the dolphins became firm favourites: Echo 1 and Echo 2.

Might Dylan, perhaps, collect duplicate copies of his favourite books through fear of loss?  Or does he collect duplicates of his favourite books in the way I obsessively collect Plath’s Bell Jar in different jackets? Certainly, Dylan’s collecting across series’ seems to suggest an interest in variety as well as duplication. Many years after she had stopped playing with Echo 1 and Echo 2 my daughter pointed out to me (when I was flirting with the idea of an asymmetric haircut) that it is symmetry which underpins beauty; our aesthetic sensibility finds balance pleasing. Such structures also link mathematics and music, two fields which can attract autistic people.

What if Dylan’s book collection represents an interest in symmetry and pattern? If so, could that interest extend beyond a book collection  to other doublings? Might it explain the way Dylan walks twice around a tree?  Could Doing the Two’s be about imposing symmetry on a life? Whether the explanation is to be found in fear of loss, love of order, a ghost twin or something else, if Doing the Two’s doubles Dylan’s  happiness I can accept two Stings.

double sting 001

Poetry And Postmen: a parent’s journey through autism

The_Guardian_12_10_2013The Royal Mail Share Offer in England has meant a lot of coverage in the British Press for Postman Pat. “Pat”  Dylan said to me yesterday, pointing to a picture in my newspaper of a City Trader wearing a Postman Pat costume.

I wouldn’t want to return to the days of Postman Pat. Between the ages of 3 and 11 Dylan’s constant companions were soft toys of Pat and Jess which Dylan would not be parted from; we lived in a loop tape of Pat’s jolly theme tune. I tried to think positively about Dylan’s obsession, imagining that one day he would help deliver letters in an idyllic community where everyone knew and loved him. I bought Pat’s educational videos and used these to encourage Dylan to learn his colours and numbers. I attempted to support Dylan’s communication and basic social skills with Pat games and toys. I did my best to turn Postman Pat into a resource.

Dylan’s fixation on Pat during these years answered a need which would vanish one day as quickly as it had emerged. What I didn’t realise, when the Pat era ended, was that he would be replaced in Dylan’s affections with other characters. We have since moved through a range of total and all-consuming interests, the latest of which is Peter Pan. On days when I am fed up with Peter Pan, I remind myself that this interest will also give way in time to new passions and desires.  I say ‘interest’ rather than ‘obsession’ deliberately: this shift in my language represents the transformation my thinking has undergone in relation to Dylan over the years. This post offers some reflections on that journey.

Being Dylan

carlisle 028Another memory of a postman: I am working from home while Dylan and his younger sister are at day care and my husband is at work.  I’m supposed to be writing a report but my mind keeps wandering to Dylan.  Recently, he has been gathering up his toy cars and lining them bumper to bumper through the house.  He spends hours fussing about the line, making choices about which car goes where and seeming to have a very clear set of rules for the making of the line. Once made, no one can touch or interfere with the line; if a car is accidentally knocked, Dylan cries inconsolably, destroys the rest of the line and flails around in distress. My three year old daughter has started copying him; one day I find her lining the cars up just like him, only her play is accompanied by a commentary: ” black one; you are sad; your wheel is broken blue one.” 

This morning, alone in the house, I fetch the cars. I lie on the kitchen floor. The quarry tiles are hard and I like the way the cars skid as I wheel them into position. I squint under the low chassis of one and at the angles made by another. I try and make sense of their colours and shapes and sizes.  My husband has taken the rubber tyres off the wheels so that Dylan doesn’t swallow them and I notice how the cars make wobbly contact with the floor. I am annoyed by this and try to bend some of them with my teeth. ‘Like Dylan’ I think. 

It is a sunny morning and the back door is slightly open to create a through-draft out onto the patio. I run my line of cars across the kitchen floor then up over a chair and onto the kitchen table, then down again and onto the carpet. I am almost at the patio doors when a noise makes me turn around.  Standing in the doorway watching me, a mix of amusement and concern on his face, is my postman. He is clutching a package that won’t go through the letter flap. He is sorry he says – the door was slightly open. I stand up, still holding half a dozen matchbox cars I haven’t been able to fit into my line. I feel flustered and that I ought to explain.  “They’re not my cars” I say at last. “They’re  my son’s. I’m just checking them.” 

By handling the cars as if they were mine,  by squatting down on the floor as if I were a child and by focusing on the sensory  elements of the play I entered a different realm and a new way of apprehending the world.  Afterwards I wrote the following poem which was included in my second collection,’ The Bat Detector’. I’ve only ever published two poems in Dylan’s imagined voice: this one and another (‘Toe-walking’, in my first collection). Reflecting on these early poems I realise they were part of my process of coming to terms with Dylan’s diagnosis and trying to understand his autism.

Dylan’s Cars

Green vintage (top gone, radiator rough on my tongue).
Daddy took the tyre off.
Spin, spin. Yellow van with springy wheels.
I flick my nails against them, make them spin.
Black cab J219 CYO, big and curvy,
Makes the line messy.
I spin its wheels then slam my arm down, let it go.
Silver tanker with four at the back two at the front:
nice and long (spin spin spin spin)
wheel it up behind the van.
Yellow bus, 8 windows one side, 7 and 2 the other,
3 at the back, 1 at the front. 21.
Only 4 wheels though. Spin, spin.
Number 5:  green racer.
Then the  neee naaa neee naaa
thin white car with blue windows
and a red box on its roof.
Good spinner.
Blue vintage next. White roof, long wheel arches,
tyres missing, front right wheel sticks.
Move it into position (nice and slow).

I squat down, chin on the floor,
so they grow big like mummy’s car
and all the others going past
with spinning wheels and flashing lights
and jumbled bits of people:
eyes, mouth, hands that don’t make sense.
This is my line.
Bumper to bumper,
these are my stuck cars with no drivers,
going nowhere.
Spin, spin.

Writing in Other Voices

Writing in another voice was not something that was new to me; it is common practice among writers and is something I had done as a poet and asked others to do when running writing workshops. One of my favourite exercises is to get students to write from the perspective of another character drawn from an envelope of possibilities. My envelope would typically include characters such as ‘undertaker’, ‘vicar’, ‘prisoner’ or ‘refuse collector’.

lightbulbOne year a student approached me after class to say that she had Asperger’s Syndrome, struggled with empathy, and did not think she would be able to tackle the writing exercise. She had drawn ‘Butcher’ from the envelope which she didn’t want to try. Drawing an alternative from the envelope didn’t seem to help.  In the end I suggested to her that she might be able to apply some of the technical principles we had been talking about in class to an inanimate object rather than another character.  The student agreed to have a go and produced a marvellous piece spoken in the voice of a building she was familiar with.  She went on to produce a series of poems spoken in the voice of objects, a project which proved so rich that the following year I included a number of inanimate objects in my envelope. That  year, however, one of the students wrote on her module evaluation:  “I did not appreciate being asked to be a light bulb, thank you.” 

Writing and Parenting as Ethnography

mocassinsI often refer to the Native American saying about not being able to know another man until you have ‘walked in his moccasins’.  I ask students to take off their shoes and imagine themselves walking in the shoes of another.  This is a bit like method acting where an actor attempts to physically experience some aspects of a role which they are to play. 

This process of inhabiting the life world of someone who you want to understand better also reminds me of ethnographic research. In my discipline of education, ethnography is defined as ‘culture studying’ and is used as a framework  through which to understand groups who might not otherwise be accessible to researchers or whose experience of education is so particular that this up-close approach to research is required.  Ethnographic research requires the researcher to gain privileged access to the community they wish to study. The researcher needs to spend long periods living alongside the group, observing group members and shadowing their experience of the world. The researcher needs to become part of the group and to participate within it, observing the group’s rituals and practices, and showing an understanding of and respect for the group’s values.

The responsibility of the researcher in conducting an ethnographic study, I tell my students, is both to the community  being studied and to the research community itself.  In gaining access to a group the researcher has ethical responsibilities to members of the group.  However, the  researcher also has a responsibility to return from the community which she has studied and report back to the wider research world, sharing and interpreting the life world of the culture-sharing community for the benefit of others. This requires the researcher to enter into the world of the community she is studying sufficiently to understand it as if she were an insider, but to retain enough detachment from the community in order to report back to the world as a privileged outsider. 

I sometimes think of writing as ethnographic practice, particularly when I am trying to write in a voice other than my own or encourage my students to write. I also sometimes think of parenting Dylan as a form of ethnography; many of the key features of ethnography I suggest here could equally be applied to caring for an autistic child. This would also apply to the requirement that the ethnographer interprets and reports back to the world as a privileged outsider; parents of autistic children spend a lot of time explaining to others and awareness-raising in the wider community.

Going Native

carlisle 029Sometimes researchers become so involved with the community they are studying that they struggle to retain the detachment required, a process referred to as  ‘going native’. In my last post I referred to a conversation between myself and a counsellor in which we used the metaphor of walking in Dylan’s shoes to describe being absorbed by the process of parenting  to the point of neglecting my own needs.  I can see that spending significant periods of time walking in your autistic child’s shoes, and coming to identify with the meanings they attribute to the world, could be considered a sort of ‘going native’.  There is a fine line to walk, perhaps, between wanting to enter into your child’s world in order to understand him better, and empathising  with his world to such a degree that you forget it is not the ‘norm’. I can see how the latter might happen; families become so accustomed to life with an autistic child that it can genuinely become a ‘new norm’. And if in the process of living with people we tend to take on some of their characteristics and beliefs, why would this be any different if we live with somebody autistic?

But what about the other side of the line? Do the benefits outweigh the potential risks of ‘going native’.  I would suggest that the more I can see the world through Dylan’s eyes, the better equipped I am to intuit his needs and support him to negotiate the non-autistic world. In my experience, it is my attempts to ‘walk in his shoes’ which have increased Dylan’s trust and confidence in me more than anything else. If I have tried to experience something the way that Dylan experiences it, then I am far better placed to help him avoid or cope with the things in life which he finds most difficult.

Woods and Shopping Centres

Christmas 2013 028When  Dylan was very young he used to lie down in the woods and stay there for long periods on his back, staring upwards. During these times he would make noise, squint his eyes and contort his hands in front of his face.  I couldn’t really tell how he felt at these times, nor did I know how to manage these walks so that I could keep Dylan moving. In the end, rather than stop the walks or intervene, I decided to walk in his shoes. This involved me mirroring everything which Dylan did, a response which I knew about having visited the Options institute in the USA, where this approach was pioneered.  Once I was in Dylan’s world I was able to experience the sensory world – the light through the leaf canopy, the wetness and softness of the leaves underneath me, the scent of soil – as he does.  This felt like a gift to me: a way of experiencing the world which convention would have prevented me from having, but which Dylan allowed me to enjoy.

The experience in the woods gave me the confidence to adopt the same non-directive strategy in a quite different environment.  Meadowhall Shopping Centre is a large indoor mall in our home city; while I wasn’t in the habit of going there I had noticed that Dylan sometimes found the environment difficult when we did.  On one occasion this involved a full-blown meltdown during which Dylan was prostrate on the floor, hysterical and unreachable.  I decided to copy him, thinking Dylan was more likely to let me help him if I got alongside him. This proved instructive.  Not only did I find that this was indeed a way of reaching Dylan at a moment of crisis, I also discovered that a shopping mall is a peculiarly unpleasant place if you experience it solely with your senses. Once I had stopped thinking about whatever it was I was there to buy, and let myself simply experience the place with my body, I realised how confusing and distressing Meadowhall must be for Dylan.

Poetry and Parenting

Not only did this process help me to develop an imagined voice for Dylan, I think it helped me to care for him with more confidence and respect. Once I had lived alongside Dylan in this way I had a clearer view of why our non-autistic world might often seem strange and difficult and frightening to him. Parents caring for children with limited communication need to develop ways of understanding which help them to care and to advocate  positively and effectively. This will vary for different families but all parents, I think, need the skills of ethnographers in order to understand their autistic children’s interests and needs.

For me, my writing practice has been an important part of this ‘ethnographic parenting’. I don’t think I would have understood some things about Dylan without trying to write about them; certainly the poems I have written in Dylan’s imagined voice and the events I have described here make sense to me as ethnography. In this respect, my writing has influenced the way in which I’m a mother to an autistic child. However, being the mother of an autistic child has had just as powerful an influence on my writing and on the  poet I have become..



Elizabeth Barrett (2005) ‘Dylan’s Cars’ in The Bat Detector, Wrecking Ball Press