Steps Count: walking with Dylan

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 Dylan’s behaviour was erratic, alternating between violent outbursts and days when he was horribly withdrawn.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.

DatesLocationTotalDaily Average
03/09 – 04/09Home22, 51511, 257
05/09 – 06/09Care8, 9114, 455
07/09 – 08/09Home36, 23618, 118
09/09 – 13/09Care13, 6362, 727
14/09 – 15/09Home18, 3029, 151
16/09 – 22/09Care8, 7081, 244
23/09 – 25/09Home28, 4179, 472
26/09 – 30/09Care24, 5554, 911
01/10 – 02/10Home25, 16312, 581
03/10 – 07/10Care7, 9721, 594
08/20 – 09/10Home14, 5737, 286
10/10 – 14/10Care14, 2012, 840
15/10 – 16/10Home27, 76413, 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.

Death and The Queen: explaining to 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. 

‘Muss’, Dylan said, meaning ‘message’.  I have taught this word to Dylan since he developed camera phobia so I can reassure him I’m not getting the phone out to take a photograph if it pings.  ‘That’s right Dylan’, I said.  ‘A message. Let me see who it’s from’.  When I saw  my daughter’s name I decided I’d better open it. She knew I was away with Dylan and that I don’t use my phone while I’m with him. ‘It’s from sister’, I said to Dylan as I clicked on the message.  ‘Have you heard the news about the Queen?’, my daughter asked. 


One of the presenters of my favourite podcast happened to mention in a recent episode that she had received the news that Princess Diana had died two hours before it was made public. She had been due to present a radio programme that day and needed to be informed in order to prepare.  It had been strange, she reflected, living with the news of something so momentous while others were unaware the day was about to be shattered.  

Now, scanning the BBC news, I remembered that podcast. A debate about the energy crisis – the first substantive Commons business since the appointment of a new Prime Minister – had been interrupted by messages passed to leaders on both sides of the House. They had left the Chamber. Could the Queen already have died?   Were politicians and TV presenters running through protocol and procedure, perhaps, changing their clothes to black?  

After a life of service, lived in the public eye, there is an unusual privacy about the moment of a royal death. Although it hadn’t yet been reported, I felt sure the Queen was already dead. As I walked with Dylan along the tow path I wondered if it showed on my face. Members of the public sometimes look at us with curiosity, especially if Dylan is holding my hand, but passers-by seemed to be looking at me with concern, as if on the verge of asking if I was alright. I would make a terrible politician, I thought to myself. I can’t hide anything.

I can’t hide anything from Dylan, that’s for sure. It is said that people on the autistic spectrum lack empathy but my experience suggests the opposite may be the case.  Dylan is hyper-empathic and can detect the subtlest shifts in my emotional state. Now, Dylan tightened his grip on my arm. He was getting anxious, sensing that I was distracted. I felt a need to explain the situation to him but wasn’t sure what (if anything) I should say. 


It’s difficult to explain death to someone with a learning disability.  My dad passed away at the end of June and I still haven’t told Dylan. I decided that Dad’s death wouldn’t have a significant enough impact on Dylan’s life to justify attempting this. Dylan and my Dad weren’t close. Dad never visited Dylan at his care home so the only time they saw each other was when I took Dylan to visit Dad. Dylan seemed comfortable enough with this arrangement but Dad (and more to the point, his wife) didn’t find the visits easy. 

I would tell myself, sometimes, that it was Dad’s age that meant he struggled to understand that Dylan behaved as he did not because he was ‘naughty’ or had been badly brought up (by me) but because he was autistic. This is nonsense of course. It isn’t generational.  My mum was marvellous with Dylan. Some people are good at adapting to Dylan but others can’t help wanting Dylan to be something else. Dylan just didn’t fit into the model my dad and his wife had for how grandchildren should behave.

As dad got frailer I stopped taking Dylan to visit. Dylan is very strong and quite physical. He loves to shake hands, pumping a greeting with his iron grip. In the last year, Dad became too weak for me to risk Dylan unintentionally hurting him. Dad never asked about Dylan and, if Dylan ever thinks about my Dad, he doesn’t have the language to ask about him.


Living alongside Dylan it is easy for me to realise that language (by which I mean communication with words) is a privilege and not a right. Witnessing my son’s attempts to find alternative ways to communicate reminds me that I’m fortunate to be able to read, write, speak and understand the spoken word, but also makes me wonder whether I would be as inventive and resilient as Dylan, should I find myself suddenly without words.  

Since midsummer, when Dad died, I’ve found myself thinking about the impact on a person of the absence of words.  Death is a hard thing for us to talk about. In the last couple of months, when I’ve tried to write about it, I’ve found myself face-to-face with an unmarked page or crossings out. Death is hard to explain. Perhaps this is part of the reason I haven’t told Dylan his Granddad has died?  It is too difficult a concept for even me to grasp. 


Philosophers, psychologists and writers (Bertrand Russell, Lev Vygotsky and Oscar Wilde to give an example from each) have argued that our capacity for thought is related to language use. I don’t agree that the absence of language limits our thinking, necessarily, but as we tend to address complex ideas through language-based means, Dylan has had to find alternative ways to build his understanding of death. 

From experience, Dylan knows that death makes him want to walk very quickly with his eyes closed tightly, swinging his arms (small animal deaths we encounter in the countryside). From his films, Dylan quite possibly believes that after you have died you talk from the sky (Lion King). Also that death is beautiful and temporary, like a sleep, and involves glass and roses, a handsome prince on a horse and a kiss (Snow White). 

One of the beliefs about death which Dylan seems to have developed is that when people die we put them in photograph frames. I wasn’t aware of this seven years ago, when Dylan moved to his care home, so I put framed photos of family members in his new room. Dylan wouldn’t accept the photos of myself and my daughter, I was told.  He turned them face down or put them away in his drawer. Only the photo of my late mum was acceptable to him.  At the time I was  hurt but I subsequently realised that Dylan is uncomfortable with photos of any living person being on display.  [As I write this post I am wondering whether Dylan’s resistance to photography could be connected with his apparent beliefs about death].

Last week I sorted through photographs for a picture of dad to put in a photo frame I’d picked up in a charity shop. Perhaps when I find one I’ll be able to use it as a prop to explain  to  Dylan about Dad’s death. I don’t think I’ll be taking the same approach with the Queen, however. A jubilee crest on a kitsch mug is as much as I can cope with in the house 🙂


I tried really hard, when Dad died, not to let Dylan see that I was feeling sad. I wonder if perhaps I didn’t tell Dylan about Dad because I didn’t want Dylan to see my grief, rather than because I thought Dylan didn’t need to grieve himself?  Now, at the thought that the Queen might have died (or might it have been at the memory of Dad?) I found myself fighting back tears. Just how was I going to explain this to Dylan? I turned my face quickly away, quickened my step on the tow path.

Something that puzzled me after Dad died was that I couldn’t cry, even though I felt desperately sad. Equally puzzling was that, at the same time, I found myself crying at reports of the deaths of minor public figures who I’d never met and hadn’t even cared for, particularly. Why couldn’t I cry for dad but I could for these others?  

I’ve written elsewhere that Dylan doesn’t cry tears and have speculated about why this might be. Dylan can be wracked with physical emotion – his chest heaving with sobs and the air filled with his howl – but there are never tears. Perhaps deep grief wracks us dry, unable to cry?  I think Dylan understands that tears mean someone is feeling sad but I have no doubt that he is also capable of feeling my tearless grieving for my Dad.


I checked my phone again as we got to the locks.  No change. Even so, I could feel a tearing behind my eyes and a sense of being distracted.  Others would feel it too, I thought to myself, as the news developed and filtered through. Just how was I going to explain the show of public grief to Dylan?  I decided I couldn’t pretend anymore. I would have to try.

‘Mummy is feeling a bit sad because the Queen has died’, I said to Dylan. 

Here I was, suddenly, talking about death after I’d studiously avoided the subject in relation to Dad.  I watched Dylan trying to process what I was saying. I can see when Dylan is thinking.  He thinks with his eyes.  Now, they were flickering anxiously.

‘Don’t worry, Dylan’, I said.  ‘It’s OK. She was very old. It was time for her to die.’

Dylan looked unsure. Perhaps the fact the Queen wasn’t particularly meaningful to Dylan would mean it wouldn’t upset him, but I didn’t want to take the risk. What if it led Dylan to have difficult feelings about his beloved Gran or to worry about other people that he loves? These things will come to Dylan one day. Now wasn’t the time. I decided to reassure Dylan by looking forward instead. 

‘We are going to have a king now’,  I said.

‘ King’, Dylan repeated after me, his eyes smiling. ‘King’.

Swords and Dinosaurs: Dylan reminds me (again) to listen carefully

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!

When Dylan tries to use speech to communicate, however indistinct his pronunciation, I try and respond with praise and encouragement. I know his sounds and vocalisations pretty well and can usually figure out what Dylan is trying to communicate through contextual clues.  This time, however, I was stumped, not least because I had never taken Dylan to Leeds.  Whatever could he see? Was it something he recognised from a film or TV?

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. 

It breaks my heart not to be able to respond as Dylan wants to his attempts to communicate. I think he has a strong sense of his own limitations and is easily discouraged by our failures to understand him. Dylan’s typical response in such a situation is to say something that he knows will be understood (as if to recover a slither of self-esteem from a positive interaction) before falling silent.  To avoid this, I try really hard to remember every permutation of sound Dylan makes and their possible meanings.

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’m not sure there is a dinosaur museum here,  I said. If you are a regular reader of this blog you’ll recall that Dylan has developed an anxiety about cameras and phones so I’m not able to use these when I’m out and about with him. Because of the need to show e-tickets and e-passes, however, I’ve worked hard to get Dylan to accept that I will sometimes need to get my phone out in public places. I’ve also had some success in using my phone for mapping and information searches while I’m with Dylan. I had an idea but needed to make sure that it didn’t make Dylan anxious. Maybe I can find the dinosaur museum on my phone, I said.

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).

I don’t know who was more relieved as the train pulled out of Leeds:  me, at having finally understood what Dylan was communicating, or Dylan at having finally received the correct response.  We talked about the Royal Armouries all the way home. I would, I told Dylan, get tickets and take him myself the following weekend. 

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.

iPad Sabotage: Dylan Loses His Music

In my last post, Selfie Sabotage, I reported that Dylan seemed anxious about people taking photographs by camera or mobile phone. This is now written into Dylan’s care plan so he is no longer exposed to photography at the care home or while he is with me.  Although this has involved a change in practice, I have found it surprisingly easy to put my phone away while I’m with Dylan. Last week I took Dylan to Marske-by-the-Sea for his summer holiday. As well as spending time on the beach we visited places I would previously have photographed but which I didn’t even consider getting my camera out for. It’s reassuring to me that habits can be quickly and painlessly changed when necessary.

My impression is that the ban on photographs has made Dylan more comfortable and I’m pleased I spotted that this was an issue for him.  Something that struck me last week, however, is that anxiety about photographs could, in time, be replaced by something else. Because I wasn’t able to take photographs, I made written notes about our trips and the places we visited instead.  By the end of the week Dylan was shouting ‘pen, pen’ at me every time I got my notebook out. 

Turkle and Technology

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’.

Turkle’s points about the impact of technology on child development could perhaps also apply to Dylan. If patience is a necessary quality when engaging a child in conversation, this is even more the case when communicating with someone who is non-verbal. Although Dylan is an adult in terms of chronological age, cognitively he is around five years of age (according to best attempts to assess this). Certainly, I would identify the development of empathy, trust and self-esteem as relevant to his nurturing and care. 

If there is any chance at all that exposing Dylan to technology could be limiting his opportunities for development then of course I should follow Turkle’s advice.  But perhaps Dylan intuitively knows this?  His protests about my phone were maybe because he wants my undivided attention – in which case, having to wait while I write in my notebook might be just as irritating to him as waiting for me to take a photo. Reading Franzen’s essay brought to mind another technology-related issue that I’ve had to deal with in relation to Dylan’s care recently. Rather than Dylan being the one protesting about the technology (as with phones and cameras) however, in this instance I have been the one doing the sabotaging.

Dylan’s iPad

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.

Recently, however, a problem emerged. On a number of occasions, Dylan managed to ‘lose’ the music he had purchased. This happened every three months or so, always while Dylan was at his care home.  Staff didn’t notice Dylan’s music had disappeared but they did report ‘challenging incidents’ for which there was ‘no apparent trigger’. Dylan would, however, show me that his music was missing when he came on a home visit and I would then have to set about fixing the problem. This was more complicated than Dylan merely ‘hiding’ the purchases (for which there are retrieval instructions) and required Apple technicians recovering the music so that it could be re-downloaded to Dylan’s iPad. The technicians were always professional, efficient and impressively competent but the process was time-consuming and frustrating. 

After the third fix, I asked if care home staff could provide more support to Dylan while he was using his iPad and suggested that they check it regularly, particularly if Dylan seemed frustrated or upset. When Dylan presented me with the problem again, just a week later, I decided a different solution was required.  Fair enough to fix something once or twice, but Dylan’s iPad seemed to have become a source of stress rather than a resource. How had this problem developed and why was it happening more regularly? I checked the stats to see how long Dylan had been spending on his iPad. Quietly aghast, I opened my secret drawer – the one where Dylan doesn’t know to look – and slipped the iPad inside. 

Intellectual Disability and Technology

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.

Tech companies do not have intellectually disabled adults at the forefront of their mind during research and design and, as consequence, even the most intuitive apps and products are not always accessible, particularly to those adults who do not use speech to communicate (i.e. who are not literate and who cannot process spoken language). Although there are some great pre-school and pre-linguistic resources on the market, Intellectually disabled adults are not pre-linguistic children, they are adults who do not (and probably are not going to develop) spoken and/or written language. 

Like the school curriculum, technology is language-based and thus inaccessible to people who do not use language to communicate. It is sometimes possible to adjust a setting on a device so that it uses visual information. For example, Dylan is perfectly able to choose between the album covers of his music downloads. Apple’s default setting, however, is to display his music alphabetically, by artist/CD name. Dylan cannot read the text so he has no idea where to click. If his iPad defaulted to the text-based rather than visual setting (which it did, with every upgrade) Dylan would become disoriented and distressed. 

This has always been an issue for Dylan, but the problem seems to have become more acute since January when Apple rolled out a major upgrade to their music streaming service. Of course, what Apple want is for people to use their Music streaming service rather than purchase albums as Dylan does.  However, Dylan is not able to use the streaming service because it is language-based.  He needs his pre-purchased music, visually displayed. When it isn’t available to him in accessible format, Dylan tends to press keys and click icons and hit whatever message (language-based, which he can’t read) appears on the screen. I assume that it is at these times that Dylan manages to alter his settings and services.

The Apple Scruffs (my affectionate name for the wonderful telephone support guys) are happy to support me to recover Dylan’s music as often as he needs, but clearly it would be better if he wasn’t able to lose it in the first place.  One of the Scruffs advised that I send some feedback to Apple, suggesting that they put an option for preventing the removal of downloaded music on Parental Controls. I never had a response to that request  – presumably it isn’t a priority as Apple want to encourage the use of their subscription streaming service rather than downloaded purchases. So, as things stand, Dylan has hundreds of pounds worth of films and music which he has bought via iTunes, but which he cannot use. These will, of course, remain his personal purchases and at some time in the future, hopefully, he will be re-united with his iPad and able to enjoy these again. At least, that’s what I’m telling myself …

Support and Technology 

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.

When I confiscated Dylan’s iPad I was aware this would be difficult for him. I told Dylan the iPad was ‘broken’ (which Dylan knew because he had shown me that the music had disappeared). This time, I told him, it had to ‘go to the shop’ to be fixed, but for how long would he accept that story? Confiscating the iPad would also be challenging for support staff. Not only would they have to field Dylan’s questions and manage any incidents arising from my removal of the iPad, they would need to find something else to occupy Dylan’s time. Turkle might approve of what I had done, but I wasn’t sure the care staff would.

I held my breath as I explained to the team leader that I was returning Dylan to the home without his iPad. To my surprise, she reacted positively; she’d had a hunch, she said, that many of the ‘incidents’ involving Dylan were caused by his frustration with his iPad. Perhaps removing it would reduce Dylan’s stress and mean there were fewer incidents of ‘challenging behaviour’? 

Dylan and Technology

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. 

Going on holiday last week presented me with a dilemma, however.  Dylan would need access to his music and films while we were away. Should I produce his iPad (music restored)?  If I did, Dylan would expect to keep it on our return from holiday and the cycle would begin again: staff not available to supervise –  Dylan spending too much time on his iPad –  music lost –  Dylan frustrated – challenging behaviour –  me back on the phone to the Apple scruffs. Nothing about that felt positive. So instead, I bought a portable DVD/CD player for Dylan to take on holiday with a selection of discs.  Old technology it may be, but it worked a treat.

In terms of new technology, the dream for the future is that tech companies give more thought to designing (or adapting) products so that they are accessible to adults who are non-verbal with intellectual disability. Perhaps that’s a pipe dream. In the meantime, it surely isn’t too much to ask that all disabled adults in care receive the support they need to access technology safely and effectively?


The photos of Sherry Turkle and the iphone are free stock images. The other photos are of Dylan’s iPad and were taken by me. The final photo is the view from a window of our holiday cottage in Marske-by-the-Sea, taken opportunistically one morning while Dylan was still sleeping.

Johnathan Franzen, ‘Capitalism in Hyperdrive (on Sherry Turkle)’, pp 67-74, in The End of the End of the Earth:  Essays (Farrar, Straus and Giroux, 2018)

Selfie Sabotage: Dylan Develops Photo-Phobia

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.

Not only have these advances in photography helped me to create a visual archive for Dylan, they have enabled the production of instant images. Being able to record Dylan in the landscape and share this with him immediately has strengthened his sense of place and helped him to develop a sense of identity and belonging. This has been further helped by the ‘selfie’ option, which has allowed Dylan to locate himself in the landscape with others and has enabled him to take photographs himself, with minimum support. How marvellous that there have been all these developments in Dylan’s lifetime, I used to think to myself. Used to?  Yes, because this has all changed. Suddenly (I suspect) and recently (I think). Although I can’t be sure – maybe I only noticed suddenly and recently and it had been brewing a while?  I am having to re-think everything. This post is part of that process…


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. 


The images of the mobile phone, roll of analogue film and view over Bradfield Valley are free stock. The images of Clever Girl and Spring are by the artist, Chloe Rodenhurst.The other images in the post are by me, except for the photo of me which was taken by a friend. That photo, and the photo of the ceiling fresco, were taken at the Watts Gallery at Compton in Surrey. The photo of Cleethorpes beach was taken on New Year’s Day with my mobile phone. The photos in Wales were taken at Easter and include the Gothic arch at Hafod (mobile), a waterfall at Hafod (digital camera) and a view of Aberystwyth (digital camera).

Better Safe Than Sorry

In my last post I recounted some of the challenges involved in teaching Dylan to say sorry and to understand feelings of remorse. The following week I found myself in the car park of Dylan’s care home gesturing, gesticulating and trying to communicate, in simple terms,  the enormity of an incident which – I told him, shaking my head and wagging my finger – he must never, ever do again. He stood stock still, staring intently at me.  ‘Sorry’, he said.

But Sorry is not enough this time.  The thing is to be safe…

Telephone Call

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 pub, before the film,  I kept trying the care home number.  It’s always difficult to get a pick-up in the evenings. Finally, success. The reassurance of ‘Don’t worry, Dylan is safe’ quickly gave way to numbness at the realisation that he could as easily (more easily) have not been. ‘Dylan could have been killed’ I exclaimed as the full implications dawned on me. My friend raised her eyebrows at me, quizzically. 

I was glad she was there and that we had plans for the evening. Otherwise, I would have spent the time upsetting myself by going over and over what I’d been told or rushed to the setting to fetch Dylan home. Neither of these would have been helpful. Dylan was OK. But he could so easily have been hit by a car in the busy rush hour traffic on the road which he (inexplicably) crossed having (inexplicably) run from the garden, across the car park and (inexplicably) down the driveway of the home. Totally unexpected. Unpredictable. Inexplicable.  

But there would be time to look for explanations later…

 Little Boy in a Green T-Shirt

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. 

Caring for an autistic child or adult with learning disability develops a custom and practice alongside a care plan. It’s important to consider all the possible scenarios while risk-assessing and developing plans.  In everyday practice, however, many of the policies are not required. Routines become familiar. Safe practices are  embedded.  We establish a norm. What made Dylan break that norm? Why, out of the blue, did he run away from the setting instead of taking the few steps from the garden back into the home? 

In the pub, trying to process the phone call,  I remembered the little boy in a green t-shirt. He would have been ten years old perhaps.  The doors were locked. Early evening. Not long home from school. His mother was busy preparing his tea. Veggie sausages and chips maybe.  Something the little boy liked.  She still doesn’t know what made her walk away, leaving an unguarded pan on the stove.  She wouldn’t normally have done that.  She could find no explanation later (just luck) for why she had walked into the front room. There was nothing she needed there.  Nor could she tell why she had walked to the bay window and looked out of the window and down the road. But when she did she noticed a little blond-haired boy in a green t-shirt across the road, heading down the street.  ‘That little boy looks like Dylan’, she thought to herself.  Then ‘Dylan! Dylan! Dylan!’ she screamed.

Afterwards,  – after I had gone screaming out of the house then had the presence of mind not to shout Dylan’s name –  not  to startle him or do anything to make him run – after I had composed myself enough to calmly call  ‘Wait Dylan. Stay there’, then dashed across the road to scoop him in my arms – after I had said ‘never, never’ and tried to communicate what he must not do again – after I had not just locked the door but removed the key too (so, he can turn it now, I thought to myself) –  Afterwards, I had asked myself why Dylan would leave home while I was cooking tea? Surely that should be the least likely time?

But with someone like Dylan, you have to be ready for the out of the blue…

‘Dylan Won’t be Coming Next Week’

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 Centre came highly recommended by parents and professionals and the shadow visits seemed to go OK.  I had the usual anxieties about leaving Dylan to the care of others when the time came, but no reason to doubt the processes in place or my decision. But when I collected Dylan that day – just two hours after I had left him for the first time – I was told (casually? or is that a false memory?) that Dylan had managed to give play workers the slip and leave the setting by a side door. It was alright, I was told – Dylan had been recovered from the Penistone Road, kept safe by passing police.

The Penistone Road. Everyone in my city knows the nose-to-tail horror of that mad arterial road north out of the city, past the Sheffield Wednesday football ground.  When the children were small we drove that road daily for work and school and friends and family.  Once, I had found my young daughter and step-daughter with Dylan’s cars lined up bumper to bumper through the house – starting at the back door then through the kitchen and dining room, into the lounge and up the stairs. ‘What’s going on here, girls?’ I’d asked them, picking my way through the cars. ‘Does Dylan know you have these?’.  ‘We’re playing Penistone Road’, my step-daughter replied.  I remember telling my ex-husband, worrying about the amount of time the children spent commuting.  That’s where Dylan was found that day.  Wandering on the Penistone Road…

It’s hard to hear something critical in the presence of Dylan. Because he picks up my mood I have to stay calm while I’m supporting him, however I feel inside. This can be a battle sometimes.  It means I have to push upsetting news on the radio or telephone out of my head and smile. It means that discriminatory members of the public (fortunately rare) rarely feel the cut of my sharp tongue. It means care workers can deliver difficult news without facing difficult scrutiny or question, at least at point of delivery.

But I was shaking as I delivered my parting shot that day.

Three Lives

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?

No one ever thought that the large and heavy gate at the entrance to the care home was necessary before Dylan squandered his third life on the road that day. Now, it is kept firm closed against the unexpected and unpredictable. A holding measure against runaways. A reasonable restriction on freedom. It brings peace of mind,  but for me the more interesting boundaries are not physical but in the mind. Why did Dylan tacitly consent to observe the boundaries without a gate for seven years?

The thing is, I told myself, to try and understand what caused Dylan to run away. So, I looked at the number and type of ‘incidents’ recorded for Dylan in the previous three months. There were some patterns. Dylan’s most serious incidents seemed to happen in the car park, a place of transition where physical and psychological boundaries are less clear. More permeable. Perhaps an activity hasn’t ended as Dylan expected or he isn’t ready to move to the next. Maybe there are too many or not enough cars. Carers may be differently preoccupied or behave differently. The wind might blow a memory of another day.  Different possibilities and opportunities may present themselves. Perhaps some of these things lined up for Dylan that day.  Or maybe there is something else I need to take away?

Only writing this today has it occurred to me that the little boy in the green t-shirt and the boy in the traffic on Penistone Road might have been reacting to disruption in the aftermath of a divorce. Why, I wonder, didn’t I consider this at the time? I know from my daughter and step-daughter how painful the breakdown of a marriage is for children.  We watch our neurotypical children and teenagers behave in unexpected, unpredictable and sometimes unsafe ways at such times. Why not Dylan? It seems entirely plausible to me, now,  that his leaving the family home and running away from Saturday Club could have been expressions of his confusion or unhappiness at the time.

But what, I wonder, might Dylan be expressing now?

Sorry Is Not The Hardest Word

With the removal of coronavirus restrictions, Dylan is getting back to some of his pre-pandemic activities and his preferred version of autism-friendly social distancing. While this helps alleviate some of the anxiety he experienced during lockdowns, life with Dylan will never be incident-free.  In this post I reflect on some learning from a couple of recent events.


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. 

Dylan also has scripts which he uses unprompted, not in response to a specific situation but in order to initiate interaction or manage anxiety. One simple script is:



This has no meaning in itself but Dylan started to use it as a script after he slapped me on the back one day (when I wasn’t expecting it) and I reacted with a spontaneous ‘hey! That’s my back’.  Dylan enjoyed the reaction from me and now demands that I respond with ‘back’ whenever he says ‘hey!’. Another script involves Dylan saying ‘Baby wears a nappy’. Dylan likes people to say this with him or echo it as a ‘call and response’ text. It seems to amuse him (Dylan is still at the stage when bottoms and farts are funny) but also calms him down if he is feeling anxious. 


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 don’t break the CD. That makes mummy sad. Say sorry.

Dylan look at all this water! Can you say sorry?  Now help me mop up.

Dylan that hurt. What do you say?

Sometimes, when I’ve been demanding an apology from Dylan in public or at his care home, I have sensed sceptical (even disapproving) eyes upon me.  Why is she bothering with that? Why get him to parrot back a word he clearly doesn’t understand? How ridiculous. 

I’ve persisted with it because learning abstract information (such as formulae and foreign languages) involves recitation and rehearsal followed by appropriate retrieval and application. In a sense, Dylan is a foreign language learner, needing to absorb abstract knowledge which might not always make sense to him but which he needs to produce if he is to assimilate the culture. Scripting, I have told myself,  offers a useful way of supporting this process of recitation, rehearsal and retrieval.

Of course, I’ve had my doubts.  There are times when Dylan has produced ‘sorry’ on demand with such a smile on his face or look in his eye that I have wondered whether he has any understanding at all (or perhaps too much). But something happened recently which has given me confidence that it is indeed worthwhile.


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…

We live in a tall, narrow house with two staircases.  At the foot of the first flight of stairs lay a picture that Dylan must have caught and knocked off the wall.  Dylan loves the pictures in our house and has fantastic spatial awareness, usually negotiating furnishings and fittings like a long-eared bat.  But on this particular evening Dylan’s sonar had misfired and the result was a frame of cracked (but fortunately not shattered) glass.

The picture is a block print my daughter made at primary school.  I want to say that she did it at infant school but that seems unlikely so perhaps it was junior school. Either way, she was at the age when artwork produced at school would usually be displayed at home for only a limited period.  But I have kept this picture on a wall  for over 20 years and cannot imagine life without it. As well as loving the colour and movement in the print, I adore the title:  Big Searches for Happiness. Some days I  imagine ‘Big’ is the name of the elephant and some days a description of the elephant’s search. I love that ambiguity.

Although the glass is easily replaced I was sad that it had broken and a little unsettled at the thought of how much worse the accident might have been. Look Dylan, I said, you’ve broken sister’s picture.  I asked you to slow down. Please go to your room.  I don’t often ask Dylan to go to his room but a strategic time out can be good for us both.  It’s not a punishment in that Dylan enjoys spending time in his room and has access to his iPad and books. I’ve never been sure whether he understands being asked to go to his room as a consequence, but it is a process he recognises and accepts. 

Usually, I go and fetch Dylan after a short time out. I started cooking. Fifteen minutes later all was quiet. Dylan was probably absorbed in something, I decided. But then suddenly he appeared – of his own volition – at the entrance to the kitchen. Dylan looked straight at me: ‘Sorry’, he said. I was speechless.  Not only had Dylan demonstrated awareness of the impact of his behaviour, he had worked this out in a period of solitary reflection, suggesting a level of understanding that is not always evident from an immediate response. Could all these years of scripting ‘sorry’ have ended in genuine remorse?

Sorry By Any Other Word

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.

One weekend in January I was asked if I could keep Dylan at home for an extra night as only two members of staff were available for the Sunday evening shift. Hindsight is a marvellous thing but, with its benefit, I wonder why I didn’t remember that on the couple of occasions Dylan had stayed at home on a Sunday night previously, there had been ‘incidents’ when he returned to the care home on the Monday. I had experienced it as unsettling too, I reflected at the time. I’d had to write the day off. If I found the change in routine so disruptive, no wonder Dylan struggled. But this slipped my mind when I was asked if I could keep Dylan at home that Sunday night in January.

Arriving at the care home the next morning,  I didn’t realise how unsettled Dylan was or detect that he was becoming anxious. And because I missed the signs, I didn’t react quickly enough to prevent him from hurting a member of staff who had come to greet us. This is not something Dylan does on a regular basis, but he can bite and scratch if he becomes upset. I have had my ears pulled in the past, but not been bitten.  This time, however, as I tried to separate Dylan from the care worker, my little finger got caught between his teeth.

Although my injury was relatively minor it was painful and a shock. I had been told about similar incidents but this was the first one I’d witnessed. How to react?  My gut response was that ‘sorry’ was inadequate.  It might be appropriate if we spill something or hurt someone’s feelings, but to bite someone then say ‘sorry’ just didn’t seem right. It’s not how things work.  Having said that, Dylan’s cognitive understanding is akin to a child of five. At that age, scratches and bites can still happen (indeed I recall two biters in my daughter’s Year 2 class) and in those situations we would expect an apology. 

Look Dylan, I said, showing him my bitten finger. You’ve hurt mummy. Say Sorry.  

The care worker had been replaced by another but I made some general observation about ‘not hurting people’. Even as I said this, I felt the inadequacy of my words.  What do you do? It’s so hard to know what to do, I said to a member of staff. That’s a parent’s perspective, of course; care home staff are used to dealing with such incidents and are trained to respond. I decided to leave them to it…

In the days after the incident I wondered whether it would have an impact on my relationship with Dylan. Having bitten me once (even by accident) would he be more likely to do it again? Would the possibility cause me to lose my confidence when caring for Dylan?  The care home manager encouraged me to put the incident behind me and to continue as before. Dylan would probably have forgotten all about it…

Except, of course, that Dylan doesn’t forget. The first thing he did the next time he saw me was to inspect my little finger.  ‘Finger’ he said. I rolled my eyes at the care worker.  How should I respond to this?  Before I could decide, Dylan started laughing; his mischievous laugh, eyes sparkling and crinkling, head thrown back. I ignored him. I wasn’t going to encourage that, I thought to myself. But Dylan hasn’t needed any encouragement. He has continued to shout ‘finger’ at me every time we see each other. He holds my little finger and roars with laughter.

It’s nerves of course.  Nervous laughter.  Dylan knows that what he did was wrong.  Just as Dylan thought about breaking the picture frame before coming to say sorry, so he seems to have thought about hurting my finger and is (in his own way) expressing remorse. When he asks to see my finger, Dylan is demonstrating his awareness of cause and effect.  When he looks at me as he inspects it, he seems to understand that he hurt me. And that inappropriate laughter is, I tell myself, Dylan’s way of processing the complex feelings which are part of remorse. Just as a rose by any other name would smell as sweet, a laughing ‘finger’ can be as acceptable as ‘sorry’.


Canaries, Covid and Christmas

I’m happy to report that Dylan has continued seizure-free. This suggests the medication he has been prescribed is a good starting point for managing the epilepsy. Equally, the absence of episodes could be linked to the fact that Dylan has been able to resume some of his regular activities. Certainly, he seems to be less stressed than he was a year ago. In this blog I share some Christmas updates and reflect on the continuing impact of coronavirus on Dylan.


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.  

Dylan has no ‘filter’ so if he finds an environment uncomfortable or threatening he will express his feelings through behaviours ranging from mild (jumping and pacing), to moderate (smashing or ripping) or extreme (hurting himself or others). Those of us who are not autistic and learning disabled know that it is not acceptable to bite someone or smash crockery but it doesn’t mean we experience the world as any less stressful than Dylan. I’d hazard I’m not alone in having felt like smashing a few plates over the last couple of years. 

Living in the age of pandemic will be taking a toll on all of us. Observing Dylan’s unfiltered physical and emotional reactions to  the environment leads me to reflect on the impact of managing our stress and anxiety through internalising rather than externalising behaviours. Perhaps someone should set up jumping, tearing and plate-smashing arenas where we can self-regulate as Dylan does.

Testing Times

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. 

On the run-up to the performance all seemed well so we included it on Dylan’s programme and allowed him to feel the anticipation he experiences so intensely.  To my dismay, just days before Dylan was due to attend the show, new regulations meant that all ticket holders would have to provide proof of C-19 vaccination or a negative Lateral Flow Test (LFT).  Dylan has refused all attempts at vaccination and we had never attempted to test him for C-19, assuming he would not consent to a process which is physically invasive and can be experienced as distressing. I was beside myself.  What to do?  I dreaded the meltdown that would ensue if I told Dylan that Disney-on-Ice was ‘closed’ after all.

I received daily texts from the venue reminding ticket-holders of the requirement to provide proof of Covid-19 status and including additional guidelines such as the need for an LFT to have been reported and notified to a mobile phone. A test kit showing a negative result would not be acceptable. Part of me was concerned that this new world was one from which Dylan (and those like him) would be excluded. Having spent the last few months returning to his regular activities, would Dylan now find himself locked out of some of the things he likes to do because his disability means he can’t provide the necessary documentation? The other part of me was determined to get him  in. 

The only option seemed to be to persuade Dylan to cooperate with an LFT. So,  a week before the event I got Dylan to watch me testing myself and to copy everything I did.  To my surprise he was quite comfortable swabbing the back of his throat – more reluctant to insert the swab in his nose but able to do enough to get a valid reading. This was an exciting breakthrough. If we could test Dylan regularly this would not only open up opportunities for activities but enable informed decisions about managing Dylan’s health care.

On the day of the performance I was nervous about whether Dylan would be willing to take a test for a second time but he cooperated beautifully. This was not the end of my anxiety about getting Dylan into Disney-on-Ice that evening, however. Having reported Dylan’s negative result  in the afternoon, it had still not been notified to my phone by the time of the show. I tried reporting again, and the care home submitted an additional report, but still nothing.  I was a bag of nerves, checking my phone and thinking how terrible it would be if having encouraged Dylan to cooperate with the testing process he was denied admission. To my huge relief, however, Covid-19 status wasn’t checked at the gates that evening. 

Notification of Dylan’s test result was finally delivered to my phone five hours after I reported.  I guess on a Friday night the system was log-jammed with people like us, needing proof of a negative LFT. The stress and anxiety I experienced getting Dylan into the Arena were worth it, however.  Dylan spent the performance on the edge of his seat, clapping enthusiastically (in appropriate places) especially for his beloved Ariel and the clock and candlestick in Beauty and the Beast.  It was lovely to see him so happy. It’s great that we can now test Dylan regularly and the experience has reminded me not to assume that Dylan won’t do something until I’ve tried everything, including authentic motivators such as admission to Disney-on-Ice.

Back to the Moon

Dylan has continued to enjoy the resumption of his overnight stays at the moon (aka Premier Inn). One of the benefits of my having retired is that I now have the flexibility to support Dylan during the week as well as at weekends. This means I can look for the cheapest night on offer at his beloved ‘moon hotels’ instead of having to pay high rates at peak times. The savings are so dramatic I’ve decided it is perfectly reasonable for Dylan to make a trip to a moon once a month.

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).

For December I had booked a stay in one of the Premier Inns in Chester, to coincide with a visit to see the Christmas Lanterns at Chester Zoo. Storm Arwen scuppered our plans, however, with the Zoo having to close its gates in order to clear the debris and the Pass over the Pennines too treacherous to risk. I figured Dylan would cope with the cancellation of the Zoo trip but not with the disappointment of no moon.  In a moment of inspiration I booked a night at our local Premier Inn as replacement.  It’s a high-rise hotel which we drive-by every week and which Dylan has rubbernecked for years: ‘moon, moon’ he shouts.  The storm might have interrupted travel but it wouldn’t stop us walking three miles …

Dylan and I had a marvellous night. I had asked to be allocated a room on the top floor. Dylan was mesmerised by the view and enjoyed picking out familiar places.  We spent an evening being tourists in our home city, riding the Christmas carousel and dining out. What I learned from this is that the highlight of our trips for Dylan is staying at a moon hotel – he’s as happy three miles as 103 miles away from home. Still, I re-booked the Chester Lanterns after the storm had passed: two moons in December for Dylan!

First Christmas 

After Dylan helped me decorate our Christmas tree one weekend it occurred to me he would probably enjoy decorating his own flat. Any 27-year old spending their first Christmas in their own place would surely love that. Jay, who coordinates the social enterprise at Dylan’s residential home, supported Dylan to choose a tree and make his own decorations and trimmings for the walls. Dylan’s flat looks fabulous.  I especially like the paper chains. This is the sort of thing about Dylan’s life which makes me smile.

Dylan came home for the Christmas holiday.  I decided not to take him to visit my Dad, who isn’t well, but we saw my sister and enjoyed winter walks, good food and favourite films. 

Another Covid Year

As the year turns, my concern for the future is not so much the threat of the virus to Dylan as its impact on his quality of life. Dylan is young and fit and if he does contract C-19 there is every reason to believe he would cope with the infection.  The current regulations around testing and isolation, however, are causing chronic staff shortages in the care sector, including at Dylan’s setting. This is a situation which poses a range of challenges and risks for staff and residents, especially in the context of adults with intellectual disability and autism. 

By way of illustration, some of the consequences of staff shortages for Dylan include the cancellation of trips and activities; inability to support with some personal care routines (such as shaving); reduction of supervision at key times of day; and the need for Dylan to spend additional nights with me. Fortunately, I am able to support with this (again, thanks to my having retired) but it’s not a satisfactory or sustainable solution to caring for a vulnerable adult with complex needs. Dylan and other adults like him require high levels of staffing in order to maintain the routines and activities which promote their health and well-being, particularly in relation to managing anxiety. I fear that the current situation leaves Dylan vulnerable to stress and therefore at risk of further epileptic episodes.

I suspect the issue of staffing in care homes is going to be a key challenge in 2022. While the regulations around the management of C-19 is creating the current crisis in staffing, the reality is that it has always been difficult to recruit and retain care workers. If the present situation leads to a review of employment pay and conditions in the care sector, then that will be a silver lining from yet another Covid cloud. Here’s hoping for better times ahead.

Thank you for following our blog in 2021

 Health and Happiness in 2022

Weighing the Cost of Caring: From Barriers to Golden Gates

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.

While we were away, I was weighing my options. I’ve been eligible for retirement since I turned 60 last February but it seemed I should continue to work. My pension is modest and below the level recommended for retirement income. I will be OK once I can claim State Pension but that is still some years off, given the recent rise in retirement age for women.  That could sound as if I have been foolish or profligate which isn’t the case. The reality is that carers face a range of obstacles in the work place which limit their opportunities and which carry economic as well as socio-psychological penalties. 

Those of us who maintain a career while caring for a family member may choose not to focus on the financial implications while working, but they cannot be ignored in the final reckoning. This post is an attempt to acknowledge those barriers and the impact they have on carers generally and women and single carers in particular.  


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. 

This cost can be more easily absorbed or offset where two parents are working but takes a painful toll on the pension of a single parent. While divorce law now acknowledges these periods of unpaid work, and the parent who has provided unpaid care is entitled to access pension benefits earned by his/her partner during such periods, those single carers who divorced before the mid-noughties bear the cost of those years together, alone (unless they had a particularly good divorce lawyer). So, it makes financial sense for parents of a disabled child to stay together if at all possible. 

Where this isn’t possible, the lone parent not only has to accept reduced years of service through breaks in and part-time employment, they also face a range of in-service barriers. These vary across employment sectors but in my own field a key barrier was not being able to attend the events, such as conferences and seminars,  which support career progression. The difficult of securing twilight, overnight and holiday care for a disabled family member effectively excludes carers from these opportunities. Furthermore, the expectation that activities to support career progression, such as research and writing for publication, is conducted in the employees ‘spare time’ (i.e. at home) also operates as a barrier for carers.


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.  

Indeed. Seven years after my promotion, I resigned from the management team because life at home was overwhelming and I didn’t feel able to manage my responsibilities at work as well as home. Dylan had left full time education but not been allocated a suitable adult placement.  He was in crisis. Simultaneously, my daughter had a medical emergency which meant she needed nursing care. All I could contemplate was being available for my children.

I needed more support at a transition point which requires many parent-carers to make adjustment to their own lives in order to accommodate the different pattern of care in adult services.  This situation is usually temporary.  The decisions about work and careers which carers make at this juncture, however, can carry permanent financial hurt. Certainly, I found myself half-wishing, after Dylan was settled again, that someone had guided me to take sick leave or negotiate a temporary release from my management role, rather than resign.

But (to return to opportunities) the other half of me acknowledged that the decision I made allowed me to focus more attention on securing an appropriate placement for Dylan. Furthermore,  once Dylan was settled in an adult placement, my demoted role provided me with the opportunity to develop my practice as a teacher and to focus more  energy on the students. While these things haven’t helped my pension, their contributions have been rich in other ways and have sustained me for the seven years since I left the management team. 

Being Brave

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? 

Did I really need to take such a radical step given the financial implications? Could I not continue to work while supporting Dylan? Combining work with care seemed to me to be increasingly untenable. Earlier in the year I had cared for Dylan at home for six weeks because I was concerned about him.  Although I didn’t realise at the time, Dylan’s behaviours were probably linked to his epilepsy. I managed to keep working during that period but it had exhausted me. I knew I couldn’t do that again. What if Dylan needed to come home in future? Even if I didn’t take over his care, I would want to be available in the event of further seizures.  Many adults with epilepsy are able to manage their life perfectly well with medication and hopefully this will be the case for Dylan. It is too early, however, to know what the future holds and during this early period of adjustment my instinct was to prioritise Dylan, not my job.

While I was weighing the costs of resigning against the benefits, some voluntary redundancy packages were offered to middle managers by my employer.  I expressed an interest, noting that I had worked at that grade before resigning due to caring responsibilities. I explained I would need to re-prioritise those responsibilities over the coming year and would  be interested in negotiating a package to enable me to leave. I hoped that my length of service and contribution, as well as my role as carer, might carry weight. Supporting carers to work effectively, I would argue, should include enabling them to leave a workplace (temporarily or permanently) when required, through appropriate, equitable and commensurate financial acknowledgement. 

Sadly, we are not yet at that point in terms of inclusive practice. While there are some good equal opportunities initiatives in the workplace, the particular needs of carers are largely ignored and unrepresented.  Given the lack of prioritisation of social care, it seems unlikely that a Government, or employer, would be brave (or flexible) enough to offer a decent scheme of support for carers in the workplace. In its absence, it is the carer who must stay brave. Being refused a leaving package appeared (on paper) to be a final barrier to retiring but, I decided, there are other ways of weighing work and care and I resigned anyway.

The Golden Gates

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.

The photos were taken on the Lincolnshire coast in September.

A Different World: Making Sense of Things

I haven’t updated Dylan’s blog for a while. All has not been well but I haven’t felt able to write about it because I’ve been struggling to make sense of the situation. While there are still plenty of unanswered questions, recent developments shed light on some of the challenges of the last few months. As you read this account, those of you familiar with the terrain will no doubt recognise the landmarks in Dylan’s story much earlier than I did.

November 2020

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.

When Dylan is distressed he tends to shred his belongings, starting with schedules and books before moving  onto CDs, DVDs and ultimately clothes. The ripping behaviour seems to be an attempt to regulate his emotions, i.e. it is a way of releasing his frustration and anxiety, particularly when we haven’t understood his attempts to communicate. We assume this is the case with his other behaviours:  jumping, flooding, urinating and biting.  When even this fails, Dylan hurts himself, scratching his arms and body and scraping his knuckles. 

In the autumn, there were reports of Dylan engaging in all of these behaviours at the care home. This was distressing but (I told myself) understandable. The situation was frustrating.  Dylan’s daily activities were restricted by Covid-19 regulations. There were staff changes which meant Dylan’s attempts to communicate might not always be understood. On top of this, building work on new accommodation for Dylan (designed to relieve his stress at living in proximity to other residents) had been suspended. The behaviours would decrease, I reassured myself, once these temporary problems had been resolved.

In November, Dylan had to self-isolate as he had been in contact with a member of staff who had tested positive for C-19. This meant he missed his regular weekend visit home. I was concerned about Dylan as there had been multiple reports of incidents that week. I became increasingly anxious, the following week, when incidents continued, with a new behaviour added.  Staff had noticed Dylan had a sore tongue. They wondered if he had been picking at or biting it. Really?  Would Dylan injure his own tongue? What would it take for someone to do that? How distressed must he be if he needed to do this to numb the pain? I started to wonder if the problem was the pandemic, or if it could be something else.

January 2021

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. 

When I managed to get Dylan back into the car, I decided it was time to act. Dylan was in distress and I needed to respond. I resolved that I would bring Dylan home to live with me for a while. The home visits seemed to be good for Dylan.  I rarely witnessed any behaviours at home and on the infrequent occasions I didn’t have Dylan at home for the weekend, the incidents increased. Perhaps the care home environment was just too stressful for him during lockdown. I could look after Dylan until his new accommodation was ready.

That evening, Dylan seemed tired but relaxed. At some point he went upstairs to his room. All was quiet. No jumping or sign of distress. A little later Dylan appeared at the foot of the stairs, staring at me. What’s that on your cheek, Dylan I asked? It was dried blood.  Dylan regularly has nose bleeds but he usually comes to find me for help. As he hadn’t, I assumed it hadn’t been very serious. When I went upstairs with Dylan, however, I found a pool of blood on his bed. How odd, I thought. Dylan watched while I stripped the bed. There was so much blood I had to throw the quilt away. I thought again how strange it was that Dylan hadn’t come to find me, and how odd that the blood was pooled rather than smeared. I looked up his nose and into his ears but couldn’t see anything amiss.

Next morning, at breakfast, Dylan showed me his tongue and said ‘ooh’. It was badly bruised. Could the blood have come from his tongue?  I struggled to make sense of what I was seeing. Is this what staff had noticed in November? Did Dylan do this to himself while I was downstairs the previous evening? Surely not? In discussion with the care home manager, the possibility of epilepsy was raised. As I worked through online training materials (in case it was) I felt terrible about all the things I had done wrong. Because I hadn’t realised Dylan may have had a seizure I didn’t check him over or monitor him through the night. I hadn’t realised that he was tired and disoriented afterwards and that I needed to adjust my expectations and care. I  shuddered at the thought of what I had not known and tried to be reassured by the fact that Dylan had survived my ignorance.

At Home

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. 

I was exhausted but knew that I had done the right thing and that it was worth the effort. In the time that Dylan was with me there were no incidents.  Dylan and I found a rhythm which allowed me to work in the mornings before eating lunch together and heading out for a long walk in the afternoon and early evening.  The physical activity and home environment seemed to do Dylan good and to remove his stress and anxiety. His distress must have been environmental, I decided.  I was relieved to hear that Dylan’s new accommodation would be ready by Easter. Hopefully this would allow us to create a calm and homely environment for him. I also planned to suggest some changes to his programme of activities, based on my experience of having Dylan at home.


I felt cautiously optimistic when Dylan moved into his new accommodation in April. By reconfiguring a wing of the building where Dylan and another resident had neighbouring upstairs bedrooms and a shared downstairs area, two self-contained flats had been created. This would give both residents the separate space they needed and support their independent living skills. Dylan had the downstairs flat (because of his jumping) with a view of the garden and his own kitchen, lounge, bathroom and bedroom. The lounge had a new wooden floor and the new bathroom (cleverly created from a walk-in storage space where the Christmas decorations used to be stored) was not dissimilar to the bathrooms in Dylan’s beloved Premier Inn. The flat was a lovely light-filled space. If the environment had been a trigger for Dylan’s anxiety and distress, I told myself as I unpacked his things, the new accommodation should surely help to settle him?

But within a few days of moving in, there were reports of  Dylan ripping, jumping, urinating and hurting staff and himself. I couldn’t keep up with the tearing of clothes. The plan not to lock Dylan’s cupboards (thinking that if we addressed the issues that Dylan was finding challenging, locks wouldn’t be needed) had to be abandoned as Dylan tore his way through a pile of new clothes and pyjamas. The situation was out of hand and I was close to despair. 

I’ve always believed that behaviour is ‘functional’.  So, what was Dylan trying to tell me? It couldn’t be the environment –  Dylan’s new flat was lovely and gave him space and privacy. Was it his activities? I was concerned that these were scheduled around shift patterns which might not fit in with Dylan’s natural rhythms and with staff who might not enjoy supporting Dylan on long walks. Could staff be recruited who shared Dylan’s interests and who could work alternative shift patterns for Dylan? I was disappointed, but not surprised, when the answer was no. It is complex running a home for multiple residents and care cannot be individualised as much as I might like.  Perhaps residential life just didn’t suit Dylan? Maybe what he needed was a supported living setting in the community, with a home-based care routine around his needs? I asked for a review meeting and spoke to Dylan’s care package manager about the possibility of looking for an alternative placement.  

June 2021

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.

Dylan was conscious but sleepy and confused and his tongue was badly injured. The member of staff reported that Dylan went rigid just before it happened and that he fell from standing (Dylan is 6 feet tall and over 12 stones in weight), hitting his head on the hard kitchen floor.  Later, the consultant would tell me that many epilepsy-related deaths are due to the fall, not the fit – that a key reason for controlling seizures is to prevent the falls.

The paramedics were (as everyone says) brilliant. They saw immediately that it was not in Dylan’s interests for them to follow strict protocol and take him to hospital – it was better if we did the necessary checks on Dylan through the night at the care home.  So, I helped put Dylan to bed and did the first couple of half hourly checks myself, before realising that night staff were perfectly able to do this and that I should leave Dylan to their care and routines.

Driving home down country lanes and across the city I was struck by how many insomniacs there must be.  I passed only a handful of cars on the road but my journey was lit by house windows all the way, like ships passing in the night. The world seemed out of kilter. Adrift. ‘The pandemic’, I thought to myself.  I slowed down, took a deep breath.

A Different World

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?

It is early days and perhaps there will be answers to some of these questions. Dylan has appointments booked for investigations, if he cooperates. I’m keeping an open mind because Dylan has already surprised me by accepting the epilepsy drug  – the first time he has ever consented to take medicine.  Is it because at some level he realises it will help him? Perhaps. More likely because it looks like sugar, sprinkled on his yoghurt.  What else is new?  Epilepsy bed mats and monitors. Anti-suffocation pillows.  Hydration tablets. Suspension of swimming. Constant vigilance and observation. An epilepsy journal. Hopefully some patterns will emerge and help anticipate the next seizure.  Already (building retrospective graphs) it is clear that Dylan’s behaviours increased in the week before the seizure incidents and continued to be high for a week afterwards, before falling.  

How to make sense of this? Are the behaviours caused by the seizures or causing them? For months I have been trying to work out why Dylan has seemed so distressed and to suggest adjustments to his care (or even a change of placement) in response. Autism ‘experts’ tell us that behaviour is functional and that we need to consider it as an attempt to communicate.  But what if the trigger for some of Dylan’s behaviours is neurological? That these are compulsive acts caused by seizure activity in his brain? The neurologist observed that Dylan may have been having minor background seizure activity for years, but at a level where we wouldn’t notice. The different world for Dylan, perhaps, is the development of the tonic clonic seizures which cause loss of consciousness and can result in injury.

I’m hoping the epilepsy drugs control Dylan’s seizures but I’m trying to figure out what else we could do to help. Stress would seem to be a factor. Levels of sleep, sugar, exercise, temperature and hydration are all under my forensic lens. I wish Dylan could tell us how he feels. But, as the neurologist reflected, making sense of Dylan’s behaviour may have been difficult before but it will be even more complex now, with epilepsy factored in. In the past I have referred to my quest to ‘see the world through Dylan’s eyes’. Having my eyesight tested recently, the optometrist reminded me that we see with our brain, not with our eyes. Indeed. Now, I am asking myself what the world looks like through Dylan’s brain. 


The deep breath I took on the drive home turned out to be too late.  A couple of weeks later I received a court summons for speeding that night (35 mph in a 30 mph-zone) as I result of which I was given penalty points and a £100 fine.  Another early lesson from this is not to be so distracted by fear and anxiety that you take your eye (I mean brain) off the road.