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.
Re-reading the report I submitted In October 2021 is helpful in establishing a milestone against which to measure progress. I might otherwise have forgotten that I was concerned enough about Dylan to bring him home to live with me last year. It was the run-up to Easter and the country was still locked down, in the grip of Covid. Dylan’s behaviour was erratic, alternating between violent outbursts and days when he was horribly withdrawn.
Even before the pandemic I’d been concerned about Dylan. There had been incidents at the care home (never with me) that suggested Dylan might be unhappy. I wasn’t sure if Dylan’s increasing distress last year was a sign of his continuing unhappiness at the care home or a temporary consequence of lockdown, but I was confident that if anything could settle him it would be spending time at home with me. I had to juggle working with caring for Dylan but we found a rhythm and Dylan seemed less anxious when he returned to residential care.
Actually, it’s not true that I might have forgotten this. The lessons I learned during that time are still with me, shaping the way I care for Dylan. What the report reminded me was that when Dylan was distressed, I’d stepped up and been prepared to act. Recently, there have been two significant incidents (one of which I’m still struggling to process) and Dylan’s behaviours in his residential setting continue to suggest extreme anxiety. Am I doing enough, I ask myself? Or at least all that I can? Sudden realisation: the report I’m writing is as much a review of my advocacy for Dylan as of him. Another reason why every adult who lacks mental capacity should have a Deputy.
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.
Last year, when Dylan lived with me, I made detailed records of Dylan’s routines and moods, hoping to share the best of Dylan’s home life with the residential setting. At the end of the six-week period, the practice I picked out above all others was walking. During Dylan’s stay we had developed a routine of taking a four hour walk every afternoon. This seemed to have a calming effect on Dylan. If we missed a day, I could sense Dylan’s tension rising.
This is not so surprising. The therapeutic effects of walking – physical and psychological – are well-documented. Everybody, it is suggested, should take 10, 000 daily steps to maintain a healthy weight, promote cardiovascular fitness and build strength. Equally important, however, regular walking Is known to improve mood, cognition, memory and sleep, reduce stress and tension and improve balance and coordination.
Through a Dylan-shaped lens, these benefits are significant. Like many autistic people, the sixth and seventh senses appear to be as important to Dylan’s functioning and well-being as the other five. Vestibular processing(movement and balance) and proprioception (awareness of where the body is in relation to others) are sensory mechanisms through which we can regulate stress and anxiety. Walking is an excellent way for Dylan to do this.
You don’t have to be autistic to feel the therapeutic benefits of walking of course. Research suggests that walking benefits our mental as well as physical health because it promotes ‘sideways communication’. People talk more freely, it is suggested, when they can’t see the listener’s face. This is why we may speak more openly in a taxi cab or Confessional. Now that sounds as if we might be back in the world of autism doesn’t it? Perhaps Dylan enjoys walking so much because it doesn’t require him to make eye contact?
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?
It wouldn’t be possible for Dylan to adopt his home-based routines at the residential setting, I was told, because activities were dependent on the availability of staff and transport, the needs of other residents and (crucially) shift pattern. This means Dylan’s activity window is in the early part of the day and closes at 3pm when day staff hand over to late staff. All residents had to be back at the care home at this time. I shouldn’t worry about this, however; Dylan was normally out by mid-day and had plenty of time for exercise.
As I couldn’t be entirely sure what was triggering Dylan’s anxiety and distress, or whether walking might be the silver bullet I’d dreamed, I didn’t push it. Not long after, the complicating factor of an epilepsy diagnosis emerged. Dylan’s behaviour at his care home continued to suggest distress but, as the professionals involved in Dylan’s care pointed out, now wasn’t the time to introduce changes to his life. What was needed was for Dylan to be supported by people who knew him and could monitor and observe for seizures.
Happily, a year later, lockdown is over, and Dylan is seizure-free. Less positively, the distressed behaviour at Dylan’s care home (never with me) has continued. When the situation escalated this summer and Dylan was involved in two distressing incidents (as mentioned earlier) I realised it was time (again) for me to step up, be prepared to act.
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?
So this summer I decided to develop last year’s hunch about walking. While Dylan was living with me, I had made a general observation that long daily walks seemed to be beneficial for him physically and emotionally. Now, I wanted to find out whether I could correlate walking with behaviour more confidently by collecting systematic data. Specifically, I was curious about whether the differences in Dylan’s behaviour at home and in residential care might be reflected in step count data associated with the two locations.
Dylan won’t carry a smart phone or other digital tracking device so the simplest and most effective way of collecting data, I decided, was by pedometer. Dylan doesn’t like things in his pockets but always carries a backpack (for sensory comfort) so a pedometer in his pack would take a reliable reading of steps outside (though not inside) his accommodation. I discussed the pedometer with the care home and introduced it to Dylan during a ‘Health Awareness’ week, showing him how it worked and where to keep it.
It is highly unlikely that Dylan understands what the pedometer is or its function so it could be argued that this raises ethical consent issues. The method of counting steps is not intrusive or harmful to Dylan, however, and the step count is of potential benefit in that it could facilitate an evidence-based review of care.
In the early weeks of Dylan carrying the pedometer I doubted the reliability of the data. Some of the care home readings seemed implausibly low. I emailed the care home manager at the end of July, expressing surprise that Dylan was averaging only 3,000 steps a day during the week compared to 11,000 a day with me. That seemed unlikely. What might be the explanation? Was Dylan using a different bag during the week? Were staff re-setting it perhaps? I removed Dylan’s spare bags and moved the pedometer to a secret pocket.
| Dates | Location | Total | Daily Average |
| 03/09 – 04/09 | Home | 22, 515 | 11, 257 |
| 05/09 – 06/09 | Care | 8, 911 | 4, 455 |
| 07/09 – 08/09 | Home | 36, 236 | 18, 118 |
| 09/09 – 13/09 | Care | 13, 636 | 2, 727 |
| 14/09 – 15/09 | Home | 18, 302 | 9, 151 |
| 16/09 – 22/09 | Care | 8, 708 | 1, 244 |
| 23/09 – 25/09 | Home | 28, 417 | 9, 472 |
| 26/09 – 30/09 | Care | 24, 555 | 4, 911 |
| 01/10 – 02/10 | Home | 25, 163 | 12, 581 |
| 03/10 – 07/10 | Care | 7, 972 | 1, 594 |
| 08/20 – 09/10 | Home | 14, 573 | 7, 286 |
| 10/10 – 14/10 | Care | 14, 201 | 2, 840 |
| 15/10 – 16/10 | Home | 27, 764 | 13, 882 |
Home-based daily average: 11, 678
Care-based daily average: 2, 961
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.
What is perhaps evident from the data, however, is that the structure and routine of residential care limits the opportunity for Dylan to walk as much as he likes to, and as far as may be healthy. This would probably be the case in any setting where care is delivered to a number of residents by shifts of support workers working across the organisation. Even in relatively small residential settings, it seems, care cannot be completely individualised because it is organised and managed to meet the needs of a group.
There are potential advantages to this. Staff can support each other. Residents have contact with a range of professionals rather than being dependent for care on (and therefore vulnerable to) a few. Resources that couldn’t be offered to an individual can be made available to a group. But these benefits may not offset the disadvantages for everyone. Might it be the case that Dylan would prefer an environment which was more like home? That he would respond to contact with fewer staff, especially if it included someone who shares his love of walking and the outdoors? Could Dylan flourish in an environment where he was able to take long walks in the afternoon and spend the evening in the pub?
Perhaps I’m dreaming. Maybe no such place exists. Not for someone with needs as complex as Dylan’s, anyway. And, in any case, the escalation in challenging behaviour probably suggests a setting aimed at adults with high need rather than a more relaxed supported living environment. Nonetheless (and aside from my commitment to evidence-based reflection) this is my gut-feeling, my hazard, my wild hunch.
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?
I’ve always prompted Dylan to verbalise key words in response to specific social situations. ‘Say Please Dylan’. ‘Dylan, can you say Hello?’ ‘Say Thank You Dylan’. ‘Dylan, say Bye Bye’. ‘Night Night, Dylan. Can you say Night Night?’ Dylan will sometimes produce one of these phrases spontaneously but usually they have to be scripted for him. In this way I scaffold the development of Dylan’s social as well as language skills, nudging him to respond appropriately to social cues. 
These cases of scripting are fairly straightforward. A more complicated example is my attempt to scaffold the word ‘sorry’ for Dylan. This is challenging not only because it’s difficult to predict the need to say sorry, but because it involves an understanding of cause and effect (the impact of our actions) empathy (how our actions make another person feel) and remorse (regret for our actions). It could be argued that adults with autism who lack capacity are incapable of understanding these concepts and thus are unable to offer a meaningful apology. Nonetheless, I script the word for Dylan:
Dylan was at home one weekend, happy enough but tight as a spring, pinballing around the house. ‘Slow down Dylan’ I shouted as I heard him clattering on the stairs, taking three steps at a time in his long stride, hooting like an owl. I was sweeping the fire out downstairs, preparing for our Saturday evening. Then, suddenly, a bang and a crash and a crack sent me running to investigate…
Sometimes it can feel as if the staffing situation at Dylan’s home is more challenging now than it was during the height of the pandemic. Although some care workers had to self-isolate during lockdowns, I don’t recall significant staff shortages. The Omicron mutation may be less deadly than previous variants, and resistance in the community higher, but the spread of the virus through the population has had a devastating impact on public and social services.
Coal miners carried caged canaries into underground tunnels as the birds would alert them to the presence of noxious gases. I think of Dylan as a sort of ‘pit canary’ for the environments we have to negotiate in our daily lives. If a place or situation triggers ‘behaviours’ in him then It might suggest that there is something stressful about the circumstances which could potentially unsettle any of us. 
Speaking of Arenas, I was relieved to be able to take Dylan to his beloved Disney-on-Ice at Sheffield Arena last month. It’s become an annual Christmas tradition for Dylan and one that he missed terribly in 2020 when it was cancelled due to Covid-19. I optimistically bought tickets for this year’s show and crossed my skates that it would go ahead. 
In November Dylan thoroughly enjoyed an overnight stay at the Premier Inn in Cleethorpes. We have visited the resort regularly as it’s the closest coast to our home city but we have never stayed overnight. On previous day trips, Dylan has pushed and pulled and cajoled me to the Premier Inn so that he can stand and gaze at it. He was needless to say in high excitement that this time he got to go inside (with a pumpkin lantern and Doctor Who).
I’m happy to report that Dylan hasn’t had any further seizures. In fact, he is in quite a settled period with few of the behaviours which were previously causing such concern. Still, I’m having to practice vigilance and learn new habits. On a recent trip to the coast, for example, I realised at the last minute that I would need to bring Dylan’s epilepsy pillows and overnight monitors. I was anxious about taking Dylan away by myself but decided it would be sad to stop doing the things that make Dylan happy. Good call. We had a fabulous week.
Across all sectors of employment, carers of disabled family members are likely to take time out of the workplace, to work part-time and to take periods of unpaid leave to fulfil their caring responsibilities. I have had to do all of these things and l have witnessed colleagues with caring responsibilities do the same. This pattern of combining unpaid care work with paid employment has a significant impact on overall years in service and thus on pension contributions. 
But (I’ve always maintained) every barrier creates an opportunity. At a psychological level, the very existence of an obstacle can motivate us. Thus, I had been successful in gaining a promotion to middle management which meant I was able to offset some of the impact of divorce and caring on my longer-term finances. I’m glad I took that opportunity. It is too easy for carers not to put themselves forward for promotion for fear it won’t prove possible to juggle such responsibilities with the unpredictable and sometimes all-consuming demands of caring for a disabled family member. 
Dylan’s recent epilepsy diagnosis prompted me to re-evaluate my situation. I recalled how I had taken a career break following Dylan’s autism diagnosis at the age of two. ‘Early intervention’ was said to make a significant difference to outcomes for autistic children and I had been determined to give my son the best chance, whatever the cost. While I don’t think my career-break made any difference to Dylan’s trajectory, it had a significant impact on my parenting skills. Perhaps resigning would help me to understand Dylan’s epilepsy just as my time out of the workplace 25 years ago had helped me to understand his autism? 
Two weeks into retirement, I’m feeling optimistic about the future. Although I’m frustrated that a lifetime of working and caring has not resulted in a living pension, the situation has spurred me to think creatively about options I could pursue in the future, once Dylan is settled. I already have plans for some part-time projects focused on writing. These will represent a return to my first love and the prospect fills me with excitement for the future. I doubt I would have had the courage to give up work for writing without the events of recent months. The obstacle course of caring could, again, become a path with golden gates.
Looking back, I think that the last time Dylan was happy was August 2020, during a holiday in the Lake District. Even with social distancing measures in place, and some necessary adjustments that must have seemed puzzling to Dylan, he was his joyous, passionate and energetic self that holiday. In the autumn after that trip, things changed.
Christmas at home was quiet but I became increasingly concerned about Dylan during January. There were reports of more incidents at the care home and, as well as the usual behaviours, concerns that Dylan wasn’t getting up in the morning. Towards the end of the month I had to work one weekend so Dylan wasn’t able to make his usual visit home. I was shocked when I collected Dylan the following weekend. I could see he was tired but he also seemed depressed. Dylan hardly seemed to recognise me and to care little about going home. I watched Dylan in my rear-view mirror as I drove to a valley where I had planned a picnic and walk. There was something not right. When we arrived, Dylan got out of the car and started leaping in the air, his face twisted, as if in pain. 
For a referral to the epilepsy clinic a seizure needs to have been witnessed. We were still in the realm of speculation with no actual evidence of what had happened. Meantime, the spike in incidents at the care home continued. I decided to go ahead and bring Dylan home, to see if I could settle him. So, during February and March, Dylan spent six weeks with me, with a day’s respite each week at the care home. I had assumed I would need to take time off work but I managed to keep things going by pre-recording lectures late at night and seeing students early in the morning, before Dylan woke up. 
Then, in early June, I took a call late one evening. Dylan had had a seizure. This time, it had been witnessed by a staff member. As Dylan was unconscious for more than five minutes, paramedics had been called and were on their way. I tried to wait patiently for an update but it was too stressful. I got dressed, headed out into the night.
I’ve always been aware that living with autism is a lifelong journey, full of turns in the road and no arrivals – as soon as you’ve sorted one thing, another is on the horizon. I don’t think I’d ever considered that one of the bends in the road would lead me into a new country. And epilepsy does feel like a different world – one I find scarier than ‘autism’ or ‘learning disability’. Supporting Dylan could be challenging but I knew the terrain. Now, I am in a world of uncertainty. What is causing the seizures? When will the next one be? Will someone be there? Will Dylan be OK? 
Living with Autism 