Routine is important for Dylan, but he also responds to variety. Routines can be comforting, but the more routinised Dylan’s care is, the more scope there is for Dylan to become upset when things don’t happen as he expects. Much better, perhaps, to surprise Dylan with a new experience about which he has no expectations and around which no routines have had chance to form. This Christmas I was reminded of some of the benefits of that.
Chatsworth House
On the run up to Christmas, Dylan started collecting leaflets for ‘Christmas at Chatsworth’. Dylan makes piles of leaflets to show us what he’d like to do. They’re his way of putting in a request. It took me a while to realise this is why Dylan picks up leaflets when we’re out and about, but once I did it made good sense. Now, Dylan has his own leaflet rack in his apartment, where he can sort and store flyers and brochures.
When I looked at the ‘Christmas at Chatsworth’ leaflet I had my doubts. The event involved a tour of the House, a Christmas Market, and an illuminated garden walk. While the event looked lovely, it wouldn’t fit with Dylan’s routines. We are regular visitors to the Chatsworth estate, but Dylan’s routine doesn’t include the House. The illuminated walk around the gardens would almost certainly not follow Dylan’s usual route. What if the Maze was closed? The café would be too busy or not serving Dylan food. The Market Stalls would be noisy with people. It was after dark. Really, there was nothing to recommend it.
But feeling brave one morning I booked tickets anyway. I was sceptical about our allotted 18.15 admission to the House (teatime) and unsure how long to allocate for pre-House activities. With transitions between activities needing to be smooth and perfectly timed, I approached the event with low expectations and some trepidation. However, it was a perfect evening. There is something about the dark, perhaps, which helps us try new things. Dylan adored the outdoor Market. He danced to a rag ‘n’ skiffle band, browsed the market stalls, and enjoyed a street food tea. He followed the illuminated walk happily, even though it ran counter to his usual route and omitted his favourite places. Other things seemed to become magically possible for him: Dylan stood for a long time watching a sound and light show unfold a storybook narrative on the façade of the House.
Inside the House, Dylan made his way through the rooms in amazement, lingering over paintings and staircases, eyes popping at the advent decorations hanging from ceilings and walls. We’ll come back soon, I promised Dylan, as I encouraged him from the House. I suspect we’ll also return next Christmas: from such experiences, Dylan’s routines form!
Disney on Ice
A change of email address meant I didn’t get the usual notification for Disney on Ice and by the time I’d realised there were few options left. The idea that Dylan wouldn’t go was unthinkable: all year, driving past the Sheffield Arena, he reminds me. I spent a frantic hour on the website. There were a few likely seats, but I couldn’t see a way of booking Disabled and Carer, as I usually do. Why is it that these are so often not selectable online? I decided it was more important that I snapped those tickets up while I could. If I kept fiddling with the website, trying to find accessibility options, I risked losing them.
The only problem, I realised after, is that I hadn’t been able to book disabled parking for Dylan. Our routine, each year, has been that we drive to the Arena and have a pre-show meal in Bella Italia. Dylan loves this, it seems, as much as the ice dancing. ‘Di-ne-i-pas-ta’ he chants when we drive past the Arena. But Disney on Ice with pasta is dependent on precise timings and transitions which I had no intention of attempting to orchestrate without a parking space. What was I to do? I decided we would use the tram. Although the logistics meant there would be no meal, I hoped the novelty of a tram ride would be compensation enough. Happily, this proved the case. Dylan’s joy on the tram was a joy to witness.
We can get ourselves boxed into over-preparing for a vulnerable adult. It’s great to have the option of Blue Badge parking and useful to have access to private transport when things go wrong. Essential, you could say, when a vulnerable person becomes distressed while out and about in the community. However, it can also limit the opportunities for joy. I suspect I may hear a new song this year when we drive-by the Arena: ‘Di-ne-i-tram’.
Polar Express
Over-preparing may have its shortcomings but so does under-preparing. I accused myself of this on the platform at Sheffield station, waiting for a train to Birmingham, Dylan flapping with excitement on my arm. I had only just noticed that our tickets didn’t include reserved seats. I’d been so keen to save money I’d selected an offer which left seats open. Friday, late afternoon, on the most popular office party day of the year. How foolish of me.
Dylan had been collecting leaflets again. Like many childlike souls, Dylan is obsessed with the Polar Express. Let me see that, Dylan, I said to him one day, when he greeted me clutching a wad of flyers. ‘Press’ he said (meaning Polar Express). But this is for Birmingham, I exclaimed. Too far away. Sorry. No. But Dylan kept finding these leaflets somewhere. Every time I picked him up he came clutching a thicker wad of Polar Express leaflets. Call me soft but after one home visit, when he’d carried the leaflets with him everywhere, I relented.
Perhaps I booked the tickets at high speed before I changed my mind? I remember it was quite complex. Tickets for the Polar Express ride on Saturday morning. A Premier Inn booking for the night before. Pizza Hut reservation for tea. Return rail Sheffield to Birmingham. Maybe by then I was too weary to check the T & Cs. At any rate, here we were on the platform, waiting for what would no doubt be a standing-room only train. I booked the trip believing but didn’t feel so brave now.
I was wrong not to believe. The truth is British people are lovely. I’m sure people are lovely everywhere but let me celebrate the British public on the train that day, and particularly the woman in the powder blue coat who swapped her seat to make space for us. Also, the couple on the even-more-packed Birmingham to Sheffield train the next day who let us have their seats because they were ‘only going as far as Derby’. Blessings on you lovely people. And let me never forget that nine times out of ten, when I’m out and about with Dylan, members of the public are understanding, helpful and kind.
The train journeys there and back would have been exciting enough for Dylan, by themselves, but these were only the bookends of our trip. We arrived in Birmingham to find the biggest Christmas Market ever. The city centre was a heaving sea of people. Dylan held tight to my hand as if in a dream. We rode the carousel and big wheel, ate pizza, walked canal towpaths, and stood for over an hour watching people ice skating, Dylan laughing and shouting: Whoops, Whoops, O Dear!
Arriving at Moor Street Station for the Polar Express ride the next day, I was amused to discover we were virtually the only people not wearing pyjamas. A humongous queue. Lots of little people. Maybe this wasn’t such a good idea. Except beside me, Dylan was waiting patiently. ‘Press!’ ‘Press!’ he shouted, squeezing my hand. Against all odds I would have hazarded, Dylan stood in that long line until we were through the barrier, then danced to the live music and song while we waited to be boarded.
Believe in what you feel inside
And give your dreams the wings to fly
You have everything you need
If you just believe
On the train, they were handing out cookies and hot chocolate. My son won’t drink his, I said. Still, they poured him some. Dylan transferred it into the ceramic mug he’d been given. Careful, I said. It’s hot. Dylan paid attention to the actors and dancers, listened to the story, and helped turn the big book pages. He ate my cookie and shouted ‘Steam! Steam!’ as our window turned white. What was there not to like? Only the hot chocolate, really.
Hot! Hot!
Ooh, we got it!
Hot! Hot!
Hey, we got it!
Hot! Hot!
Say, we got it!
Hot chocolate!
Why don’t you try it, Dylan, I said. It’s only chocolate milk. Leave it to cool if you want. And to my surprise, Dylan picked up his Polar Express mug and drank it up. Back at Moor Street, with time to spare before our journey home, I headed back to the Christmas Market. There was something I needed to check. Come on Dylan, I said. I’d seen people walking around with little red cups earlier. I hunted down the stall. Hot chocolate, Dylan, I said. To my amazement, he drank it. At almost 30, Dylan has added a hot drink to his repertoire.
The Sea
Between Christmas and New Year my car let me down twice. I had to wait two hours for recovery from the short stay car park at the railway station where I’d gone to say goodbye to my daughter, returning to London. Freezing. Hungry. No money. Miserable. At least I didn’t have Dylan with me, I told myself. A couple of days later, when I left my friend’s almost new year party, my car wouldn’t start again. I abandoned it and got a cab. At least I wasn’t with Dylan, I told myself.
And then I realised I might be. Dylan and I always go to the coast for New Year. It’s what I call a tradition (rather than a routine). Cleethorpes, in Lincolnshire, happens to be the nearest sea to Sheffield so that’s where we go. We walk the coastal path to the Humberston Fitties where Dylan checks on all his favourite chalets before heading back to town for a chip supper. The thought of Dylan and I stranded in Cleethorpes preoccupied me the whole of the next day, even when my friend assured me he’d found and fixed my car problem. And then, a solution. If Dylan had accepted Disney on Ice by tram, perhaps he would accept Cleethorpes by train? Providing, I told myself, I could reserve seats.
On the website, I found something even better: First Class tickets at a not unreasonable cost. So, we travelled in style through fields of dykes and winter cabbages under a bright sky, the carriage to ourselves and Dylan in his element listening to Adele on his iPad and admiring the curtain at our window and the table lamp, while I got to relax. On the return journey I vowed that (providing the prices weren’t silly) I would always book First Class when travelling with Dylan in future. The next day, however, hundreds of people were reported to be stranded at Doncaster Station as the line was flooded, and services cancelled. First Class rail might be better than driving, but only if the trains are running. It seems we got lucky.
*
The things Dylan and I enjoyed most this holiday season were twists on familiar activities or new experiences which required one or both of us to be a bit brave. These might seem like very small challenges, but if your needs are as complex as Dylan’s then they are enormous achievements. This Christmas, Dylan tasted his first hot chocolate. That it’s still possible to introduce Dylan to new experiences and activities gives me hope.
https://www.youtube.com/watch?v=sc6IHUdl3V8
Last weekend, we were battered by Storm Babet. My city sits within a basin of five rivers inside a circle of seven hills. In the southeast, the Don burst its banks and flooded Catcliffe. In the southwest, the Porter plunged my local park underwater and turned my cellar floor black. I climbed up and down the steps to my basement, checking for damp. 
Up on Strines moor, in the Dark Peak, I drive slowly across the streams and waterfalls fording the tarmac. Storm water is a force from the hills, tumbling through woodland and between the crevices of drystone walls, gushing across fields and over roads, down into the valley below. The reservoirs are brimming tears today, but the rain has stopped. The sky is brightening. ‘Splash’ says Dylan as I drive down the centre of the road, water spraying around the car.
Not everyone is so understanding. Recently, I had an email from the care home to say there’d been an incident. Dylan had tried to bite one of his carers while on a trip to the Yorkshire Sculpture Park. I read the email a few times before it made any sense. The park is Dylan’s favourite place in the world. He has been going there since he was a baby. He held his 21st Birthday Party there. It’s where he goes to celebrate and rejoice. There shouldn’t be any problem taking Dylan there, providing staff stick to the drill. This, of course, means allowing Dylan the time he needs at the weir. 
Recently, I came across a reference to ‘Blue Mind’, a phenomenon first recognised and named by Wallace J. Nichols in 2014. Martinez (2022) describes Blue Mind as a mildly meditative state. ‘Water in the ocean, rivers, lakes and even baths’, she explains, ‘can make us feel calmer, increase well-being and boost creativity.’ Could Blue Mind Theory explain Dylan’s relationship with water? I read on with interest. 
‘Could you remind staff to offer Dylan extra fluid’, I emailed his care home during this week’s heatwave. One connection that was made, during Dylan’s previous seizures, was with hot weather. Another observation that was made, at the time, was with coronavirus. Dylan, like many young people with autism, found lockdown difficult. There is evidence that epileptic seizures can be brought on by anxiety, something worth considering in relation to a young man whose lack of capacity and speech often leave him with extreme anxiety. This was almost certainly made worse by the pandemic. 
‘How has Dylan put on a stone in weight?’ I asked the care home manager. I already had a suspicion that he wasn’t getting enough exercise (which I’ve written about 
In June 2021, when Dylan had his third and most dramatic seizure, I happened to be reading The Shaking Woman by Siri Hustvedt. The book had been recommended to me by a colleague who suffers from migraines. He had found Hustvedt’s story helpful in managing what had become for him an almost debilitating condition. Reading it might help me to understand my daughter’s severe attacks and to feel more able to support her, he said.
I should clarify that I’m referring specifically to male masturbation and not to the wider sex education curriculum (such as menstruation and where babies come from). Education for adults who are diagnosed with intellectual disability should be responsive to need and masturbation is (so far) the only topic of direct relevance to Dylan.
Such adjustments seemed to me a reasonable and sensitive way of providing Dylan with some privacy and I was optimistic this might reduce the behaviours that appeared to be linked with masturbation. Still, it occurred to me, it might be useful to also offer some sex education. Adults with intellectual disability need support to negotiate the skills and practices of daily living, which includes masturbation. Dylan had shown no interest in a book about puberty when he was younger, but perhaps he was ready for more information now: a short film would be good, as this is the format he engages with and processes most easily. 
What is a mother to do? Ideally nothing at all; this is one thing I would prefer not to have to take responsibility for. But in the absence of any intervention or resource from the care provider (or anyone else in the sector as far as I could tell) parental support was probably better than nothing. Too bad there wasn’t a father around, but I’d managed pretty well on my own so far and I’d sort this too. Still, my commitment wavered as I searched for appropriate resources. Trying permutations of requests for a video brought up endless porn and dating sites. My search history made me blush. ‘Don’t be going missing now’, I told myself, alarmed at the thought of someone analysing my laptop for clues about my life.
The annual report I have to submit as Dylan’s Court of Protection Deputy is due so I’m reading through my ‘Dylan book’, noting the significant things that have happened in the last 12 months. I’ll need to explain the decisions I have taken on Dylan’s behalf and the issues I anticipate having to respond to in the future. Although the reporting process is a bit onerous, it’s a useful exercise in that it requires an evidence-based review of Dylan’s life. 
The difference between how Dylan is with me at weekends and his behaviours during the week is stark. There are regular reports from Dylan’s residential setting of behaviours which are considered challenging, but I rarely witness these myself. As it’s not appropriate or possible for me to care full time for Dylan, I need to identify the aspects of home life which promote Dylan’s well-being and happiness in order to apply these in his placement setting. 
So, when I returned Dylan to his care home last Easter, I explained how beneficial physical exercise appeared to be to Dylan and asked whether his long afternoon walks could continue. My sense was that walking helped. Could Dylan please do as much as possible, preferably between his preferred hours of 2 and 6pm? 
The challenge of advocating for a young man who ‘lacks mental capacity’ and who doesn’t use speech to communicate is understanding what his behaviour signifies and working out how best to respond. Hunches about what might be distressing Dylan may be interesting and sometimes accurate but difficult (or impossible) to confirm with data. While I quite often act instinctively, I much prefer firm (or even soft) ground for my decisions. In this respect, Dylan’s daily care (not just my annual report) is based on evidence. What other way is there to figure out what is in the best interest of someone non-verbal who lacks capacity?
As it turns out, the summer numbers I thought untrustworthy were probably not. The data collected subsequently replicates the initial readings, suggesting a clearly differentiated step pattern in the different settings. This may or may not be related to patterns of behaviour in Dylan’s two locations. I haven’t mapped the step data against the incidents of ‘challenging behaviour’ in the care home but that would be the thing to do to fully explore the relationship between walking and well-being for Dylan. 
Dylan and I were on the canal tow path near Bingley on Thursday 8th September when my phone pinged. I had taken Dylan on an overnight visit to see the 3- and 5-Rise locks on the Leeds-Liverpool Canal. Dylan loves water and is fascinated by engineering so I figured the locks might capture his interest (and mine). We had walked to Saltaire that morning and were heading back for a late lunch at the 5-Rise café when my phone interrupted us. 
Recently – by which I mean in the last half year or so – Dylan has been excited and shouty each time we pass the city of Leeds by road or rail. On the approach to Leeds railway station, Dylan would point and shout what sounded to me like ‘Gar, Gar‘ followed by what I heard as ‘Saur, Saur’. Skirting the city on the M1, Dylan would scan the skyline before declaring: ‘Gar! Saur!‘
Dylan tends to produce only single syllables so will typically cut a word down to a key sound. As far as I was aware ‘Saur’ means dinosaur so I tried that. On one occasion: are there dinosaurs there Dylan? How exciting. Another time: That’s right Dylan, dinosaurs. Except that wasn’t right of course. My attempts to respond positively to Dylan’s attempts to communicate elicited dejection and disappointment. 
Is there really a dinosaur museum here? I asked Dylan a couple of weeks ago, as we waited at Leeds station on our way back to Sheffield from Durham. Heading north on a train the previous day Dylan had shouted and jabbed with his finger at the skyline, trying desperately to get me to see (and name) what he could see. Oh yes, I had said. I see (although I couldn’t). This hadn’t satisfied Dylan and now he was trying again: Gar, he shouted at me. Then Saur! Saur!
I didn’t have long. Dylan was looking uncertain, on the verge of protest. I typed ‘Ten best things to do in Leeds’ into Google. The page was still loading when Dylan (keeping a close eye on proceedings) pointed to one of the first images to appear, shouting excitedly: Gar! Gar! The Royal Armouries! It was the Royal Armouries!
I have never been myself but staff from Dylan’s care home had taken him once or twice in the pre-pandemic past. With his wonderful recall and geographical knowledge, Dylan had remembered those trips and had tried every way he could to communicate that he would like to go there again. He had pointed at the museum when we travelled through Leeds. When I didn’t recognise it he had tried to reproduce the sound he hears when it is named (‘Gar’ sounds like ‘Arm’ in ‘Armouries’). When I still didn’t understand, Dylan had explained what we would find there (swords not dinosaurs).
We had a wonderful day. Dylan quite clearly remembered the museum from his previous visits and led me around confidently. I could see why the building appealed to Dylan (tall with picture windows and a glass elevator) but the exhibits he picked out intrigued me. Dylan liked the ‘Hunting’ zone because there were animals (as long as they weren’t being obviously hurt) and especially enjoyed a display of a man in a punt. I was surprised when Dylan chose to attend a live performance of a monologue by an actor (with sword). Dylan was absorbed by the event, as if listening carefully. I found this humbling. I had, once again, learned something about language from my ‘non-verbal’ son.
In my last post, 
I was minded of Dylan’s phone-phobia recently while reading a Jonathan Franzen essay on Sherry Turkle (a ‘technology skeptic who was once a believer’). Children, Turkle writes, ‘can’t get their parents’ attention away from their phones’. The decline in interaction within a family, Turkle suggests, inflicts social, emotional and psychological damage on children, specifically ‘the development of trust and self-esteem’ and ‘the capacity for empathy, friendship and intimacy’. Parents need to ‘step up to their responsibilities as mentors’, Turkle argues, and practice the patient art of conversation with their children rather than demonstrating parental love (as Franzen puts it) ‘by snapping lots of pictures and posting them on Facebook’.
Dylan has been using an iPad for years, primarily to access CDs and films he has purchased and downloaded and which he can watch offline. Previously, Dylan had portable DVD and CD players for this purpose but the iPad proved a better option practically and for promoting independence. Although initially intended for use during journeys and holidays, Dylan became increasingly attached to his iPad and built it into his daily routine, often preferring it to his TV or over other activities.
It is very hard to remove something from an adult, even when they lack the capacity to make decisions and need someone to act in their best interests. Dylan had been using an iPad for years and it had a key role in his life. I was aware that in removing it I could create more problems than I solved. The iPad, however, was itself the source of some of the difficulties which Dylan was encountering.
What the recent problem with the iPad has demonstrated is that, given the built-in obstacles in the technology, Dylan requires support to use it. Dylan generally recognises when he needs support with something language-based and will request this. However, the personal usage data suggests that Dylan had been spending significant amounts of time on his iPad. The reality is that if staff are not available (or able) to support Dylan with the technology, rather than a resource it becomes a source of frustration and anger, leading both the technology and Dylan to breakdown. 
At the time of writing (11 weeks after I confiscated the iPad) there is some evidence to suggest that the iPad had become a source of distress for Dylan rather than a support; certainly there has been a reduction in the total number of incidents when Dylan has become upset at the care home. I’ve been most struck, however, by the ease with which Dylan has accepted the change. Just as I quickly got used to life without my camera phone, so Dylan has adapted to life without his iPad. He asked about it a few times in the early days but hasn’t mentioned it (at least to me) for weeks. 
It didn’t take long, following Dylan’s autism diagnosis, for me to realise that visual images – photographs, symbols, videos – would play a central role in his life. One of my earliest memories of that time is of walking around the village where we lived, photographing places we visited to add to the communication book I was making. It was 1996 and Dylan had just turned two. Digital photography and mobile phones had not yet landed. I shot rolls and rolls of film in those early years and (with an industrial camera which made my shoulder ache) produced numerous home videos – not to record, celebrate or share our lives, as is the case today, but as teaching resources for Dylan’s home education programme and communication aids to support our family life.
Such visual supports are helpful for any child who receives an autism diagnosis but for Dylan, who has remained non-verbal, they are essential. The visual world is Dylan’s language, his ‘mother tongue’. At 28 years old, Dylan has a vast visual vocabulary, supported by thousands of photographs taken over the course of his life. Dylan processes, organises and records visual information at astonishing speed. He can scan an environment and log it visually within minutes. When Dylan is given his visual programme for the day, his eyes flick quickly through the images, absorbing the information. If he encounters an unfamiliar symbol or photograph, he scrutinises it intently, looking for clues, before asking for more information or (sometimes) becoming anxious about what he doesn’t understand.
The photos developed from hundreds of rolls of analogue film have, of course, been superseded by digital images stored on various devices: computers, lap tops, iPads, iPhone and USB sticks. These technological developments may not have been made with disabled people in mind but they have helped to meet Dylan’s needs as a non-verbal autistic man with an intellectual disability. In particular, phone-based photography has given Dylan access to a portable archive which he uses for a range of purposes. Dylan browses the photos on my phone to communicate, for personal pleasure and for reassurance. Sometimes, multiple functions are served at once; while having a drink in a pub, for example, Dylan will scroll through the images on my phone while I read, the pleasure and reassurance he finds in this activity punctuated by conversations about selected images.
My mobile phone is packed with photos, the vast majority involving Dylan in some way. They are records of places we have visited, mostly landscape but sometimes featuring one or both of us (sometimes ‘selfies’ but more often not) generally taken by me but a few by Dylan, my daughter or friends. The gallery is added to on a weekly basis, when Dylan comes for home visits, and more often during holidays and trips. But here’s a thing. The most recent photo of Dylan on my phone is a selfie of us at Cleethorpes, taken on New Year’s Day. Dylan has made numerous home visits, since then, and we have been on overnight trips and spent a week in Wales. But, except for one landscape shot taken in Wales on 21st April, there is no record on my phone of these visits.
The photo in Wales (on the left) was taken to see if Dylan would allow me to use my camera phone after months of him objecting. How many months? At least five, maybe more. I can’t pinpoint exactly when it started. I wish I could because then I might be able to work out why. Looking back at the photos of Dylan on my phone immediately before New Year’s Day, he seems to be smiling and happy. There are fewer than in previous years, perhaps. Now, as I search my online records, I see that on 26th December I reflected to friends that Dylan seemed to ‘have become camera shy’ and reported that I’d shaved him in case he disliked his full beard. So, Dylan was already feeling uncomfortable about phone photographs in December? 
And now I think about it, perhaps that could explain the day I had to report an ‘incident’ during a home visit (such a rare occurrence that the care home manager commented to me that she was surprised to see the report). Dylan and I were completing a familiar and much-loved walk when he became distressed and started jumping wildly (one of Dylan’s anxiety behaviours) at the edge of a steep path. It was a difficult situation for me to manage and I was badly shaken, especially as I didn’t know what had triggered it. But now I remember that I had taken my phone out to photograph the valley. According to my diary that was 17th October. Could Dylan really have been anxious about photos as long ago as that? How much discomfort might I have put him through before he managed to communicate this to me?
Now, because I’m alert to Dylan’s discomfort, he only has to say ‘no, no’ and wave his hand. I thought that I had always asked Dylan for his consent before taking his picture, but I realise now that I probably did this in the same way that I ask my dad or daughter for permission to photograph them. Dylan needs to be given more opportunity to communicate consent or refusal than a neurotypical person because he doesn’t have access to the usual strategies, such as spoken language. Obviously, since Dylan has refused to be photographed I’ve stopped sharing pictures online and I’ve been giving some thought to archival material (such as on this blog) and reflecting on ethical and other implications. However, I’m not convinced that whatever is underlying this is quite as straightforward for Dylan…
Dylan’s current objection to photography goes beyond my taking his picture; he objects to my taking any photographs at all. There are only 16 shots In my mobile phone gallery since I photographed the two of us on New Year’s Day. With the exception of the photo in Wales, they were all taken when Dylan wasn’t with me. Even if I reassure Dylan that I am not going to take a picture of him, he still says ‘no, no’ and waves his hands if I get my phone out. Sometimes he tries to grab the phone from me and once or twice he has become distressed enough for this to threaten to lead to the jumping which signals anxiety. 
Obviously, this is a risk I have not been prepared to take for the sake of a photo of, for example, Devil’s Bridge at Pontarfynach. Our visit there at Easter was the highlight of Dylan’s holiday. Dylan was utterly transfixed by the chaos of water and stone and he lingered at the Punchbowl and viewing platforms on Jacob’s Ladder as long as I would let him. Previously, Dylan would have wanted me to photograph this magical place so that he could return to images of it whenever he wanted. ‘Do you want me to take a photograph of the water for you, Dylan?’ ‘No, no, no’. Of course, I could not risk Dylan jumping into the Mynach Falls. Serendipitously, on this occasion, a print of Devil’s Bridge was hanging in our holiday cottage and every evening Dylan would stand before it, entranced. Since we returned from our holiday I have bought a copy of the print (Clever Girl) and a sister piece (Spring) by the same artist, Chloe Rodenhurst, so that Dylan can continue to enjoy the visual world that speaks so eloquently to him (if no longer via photographs).
I might not have risked photographing the Mynach Falls but I did conduct an experiment that week. One of the theories I’ve developed is that Dylan dislikes me using my phone rather than the phone camera. Could he be trying to sabotage my conversations with his sister? Maybe he doesn’t like the effect of speaker phone on language. Or perhaps Dylan resents any time I spend on my phone (checking for news and email) and wants my attention to himself. Quite right too. Or (a wilder hypothesis) could he have developed anxiety about my phone as a result of a specific incident? Dylan may, for example, have made a connection between my mobile phone and a Lateral Flow Test he had to take for Disney on Ice (due to a problem with the notification). That was in December which might fit with the Christmas/New Year dates (but wouldn’t explain the October incident I’ve recalled while writing this blog). To test whether Dylan’s protest is about my phone or my photography, I took my old digital camera on our trip to Wales.
I was able to take 14 photographs that week, including one of Dylan under the Jubilee Arch at Hafod (which I won’t share). I would say that Dylan wasn’t super relaxed but he gave consent and seemed happy enough. It was for this reason I attempted to take a photo with my mobile phone on 21st April. Having used my Fujifilm all week, how would Dylan react to the iPhone? I took the shot but Dylan wasn’t at all happy about it and, given the terrain, I put my phone away. What do I surmise from this? It may be the phone, rather than the phone camera, which makes Dylan anxious, but I need more evidence. If it is the phone, then I have a not-insignificant problem. I need to be able to use my mobile in emergencies and for navigation. I should be able to take calls from friends and family if they need me. I have to be able to use digital apps (railcards for example) when we are in the community. And, importantly, I need to be able to record medical and other incidents for Dylan’s records. 
Recently, for example, Dylan sustained a cut on the head which I asked him if I could photograph with my phone. Dylan refused and the cut had to be photographed without Dylan’s consent by the care home. While not ideal, there will be other incidents and injuries, particularly given Dylan’s epilepsy, which need to be recorded in this way. I’m told that care home staff photograph Dylan using a variety of devices, including iPhones, but I don’t know whether this is with Dylan’s consent or if he has ever protested about it. Is it only my phone that Dylan objects to? I need more information. Meantime, I am trying to stay alert and open enough to hear what it is Dylan is trying to communicate and work out why. I’d be glad to hear from anyone who has experienced anything similar or has new ideas and fresh eyes. 
By chance I was ten minutes away from Dylan’s care home when I took the call. I had arranged to meet a friend at the cinema that night. ‘I’m just going to check all is well with Dylan’, I said to her as I arrived. ‘I missed a couple of calls while I was driving’. ‘At least we’re nearby if not’, she replied, rolling her eyes. 
In the seven years he has lived at the care home Dylan has never attempted to leave the setting. He doesn’t have a history of running away although he will run towards something he wants and can see (sweets, for example, or DVDs). Although Dylan isn’t technically an ‘absconder’, the risk of him running from carers is written into his care plan. 
Later, I remembered that there had been another time. I don’t have a strong memory of it because the details reported at the time were sketchy. Enough to terrify me though – enough for me to have blocked the memory, buried it deep in my core. While I don’t recall exact dates, I’m pretty sure Dylan still had that green polo shirt. Eleven years old perhaps? My ex-husband and I were not long divorced. I was working full time and struggling to get chores done. I couldn’t take Dylan to the supermarket. No online shopping back then. My daughter to get to Stagecoach too. I just couldn’t manage Saturdays. So, I enrolled Dylan in a play scheme at a local Inclusion Centre.
The child in a green t-shirt. The boy on Penistone Road. The young man running from the care home. Dylan has used up three of his lives, it seems. On each occasion he was being supervised by a parent or professional who believed Dylan was safe. Each time, he evaded their care, placed himself at risk. How do we keep children and adults who lack capacity safe? How can we plan for the unpredictable and unexpected – the ‘never before’ – without leaving life a dull and limited thing, removing the space a person needs to breathe?
Living with Autism 