An NHS guide for patient management during the coronavirus pandemic notes that ‘People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely’ (see link below). In 2018-19, apparently, at least 41% of deaths of people with a learning disability were from respiratory conditions. Among those with a learning disability there is a higher prevalence of asthma, diabetes and weight conditions (obese or underweight) which make this group ‘more vulnerable to coronavirus’. The guide notes there is therefore ‘strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic’. It also cites evidence that people with autism have higher rates of health problems which ‘may result in elevated risk of early mortality’. Although Dylan doesn’t have the underlying conditions which increase vulnerability to coronavirus, his autism and learning disability mean it’s impossible not to worry.
Coronavirus and Capacity
Dylan’s combination of autism and intellectual disability (which I’ll refer to as AutID from this point) means he requires 1:1 support in a residential setting. This puts him at increased risk of infection because he has contact with a large number of support workers (and, by association, their families) which increases his potential exposure to the virus. As we have seen in relation to the elder population, the social ‘bubble’ of a locked-down care home is large and intimate enough for the virus to spread quickly once it has been introduced.
Fortunately, all is well at Dylan’s setting; no one has contracted the virus and the staff are all well and still at work. It is not inevitable, of course, that if a resident or staff member catches the virus they will spread it to others in their care bubble. There are processes (such as testing and using appropriate Personal Protective Equipment) that are designed to prevent this from happening. There’s been a lot of discussion in the media about the shortage of tests and PPE but there are places where supplies are getting through as they should which, happily, is the case at Dylan’s care home.
Even so, it is challenging to provide care for someone with AutID during a pandemic. Those who care for Dylan have to keep him safe while protecting themselves and others. This isn’t easy, even with PPE and full access to tests, because of Dylan’s lack of understanding of social distancing and his inability to protect himself or show consideration for others. Added to this, some people with AutID won’t accept the preventative care and monitoring that are so important during a pandemic.
How do you protect someone with AutID?
It’s all very well having an adequate supply of PPE but adults with AutID may not accept these. This will vary for individuals but Dylan will not tolerate wearing a mask or other people using them. The NHS guidance referred to earlier acknowledges this and advises clinicians that ‘masks and protective clothing may frighten [people with AutID], make them more anxious and lead to adverse behaviours, such as hurting other people, hurting themselves and destroying property.’ This is a pretty accurate description of Dylan’s likely response to an insistence on wearing face masks and it’s good to see such information being issued to front line staff. While I don’t think Dylan will ever accept a covering over his own mouth and nose, I’ve found he will accept me wearing a scarf over mine. This is a simple adjustment, enabling me to do what I can to protect Dylan.
Fortunately, Dylan is quite used to people wearing aprons as this is part of the routine he follows for his social enterprise activity. I’ve also recently managed to persuade Dylan to wear protective gloves when we are out in the community. The first time I wore some I offered a pair to Dylan. He wasn’t interested and pushed them away. I kept mine on and put the spare pair in the side pocket of my backpack. To my surprise, within half an hour of our walk Dylan pulled the gloves out of my pack and put them on. This is the first time I’m aware of Dylan copying behaviour I’m modelling which feels like a real breakthrough. It doesn’t take Dylan long to adapt to something once he’s taken the plunge: the next time we went walking Dylan expertly showed me how to blow into a glove before putting it on.
Monitoring Dylan is a little more challenging. Staff are taking the temperature of residents on a daily basis but Dylan won’t allow this. The only way I managed to get a temperature reading from Dylan as a child was with a Headscan thermometer. There are none to be found at the moment but I keep looking. Taking a temperature reading could be important for monitoring Dylan’s health as he has limited strategies for communicating how he feels.
As the NHS guidance notes, some people with learning disability may be unable to explain how they feel or ‘not be able to articulate their response to pain in the expected way’. Dylan’s communication is limited but he does say ‘oo’ or ‘poor Dylan’ if he is in pain or feels unwell. Sometimes the words he chooses can mislead, however; Dylan uses ‘sick’ to communicate that he is hungry for example. It took me a while to figure this one out but it makes perfect sense – a not very nice feeling in his tummy – and reminds me that Dylan is creative about communication and will substitute a word he knows for one he doesn’t. The NHS guidance includes links to useful resources such as the Non-Communicating Adult Pain Checklist and Wong-Baker FACES Pain Rating Scale, which I’ve been using with Dylan at weekends to encourage him to show me how he feels.
The NHS guidance warns that the presentation of coronavirus among people with a learning disability ‘may be different from that for people without a learning disability’. In some cases, the guidance notes, frontline staff will need to understand behavioural responses to pain such as laughing, self-harm or becoming withdrawn. It’s good to see these examples in the guidance and to read the advice to clinicians to listen to the family or carer as ‘They know the person who is unwell best.’
How do you treat someone with AutID?
The NHS guidance is aimed at front line staff treating people with AutID for coronavirus infection in a hospital setting. While it is reassuring that specialised guidance has been provided about the needs of this very vulnerable group of people, the prospect of Dylan requiring hospital treatment for Covid-19 fills me with dread.
I heard recently that someone with AutID may be accompanied to hospital by one other person (a parent or carer). I found this reassuring as previously it had been unclear and the cause of much concern. Anyone caring for a child or adult with AutID would probably agree that the idea of them being alone in a hospital doesn’t bear thinking about. ‘You cannot let that happen, mum’, my daughter told me. ‘Promise me you won’t let that happen’. I have had to think through some difficult (almost unimaginable) scenarios as the parent of a vulnerable adult. Sometimes there is a flash of intuition which causes me to try to extract promises from others. I telephoned Dylan’s care home manager. ‘Please’, I said ‘Please promise me you will not let Dylan go to hospital alone if he becomes ill.’
For Dylan, and I suspect for many adults with AutID, hospital-based testing and treatment (from pain relief through to ventilation) would necessitate restraint, sedation and inconceivable distress. This is such a difficult possibility to consider, the only way of coping is to focus on keeping Dylan safe at home. Recently, listening to the latest bulletin about testing for coronavirus in care homes, I realised this was not necessarily a good thing, from Dylan’s perspective. The antibody test for coronavirus is a blood test and the test for COVID-19 a nose swab. Both procedures would cause Dylan enormous distress and require restraint and sedation. I telephoned Dylan’s care home manager. ‘I don’t want Dylan to be tested’, I said, ‘Please tell me he won’t be tested’.
Fortunately, everyone involved in Dylan’s care knows him well enough to agree about such things. There is no plan to test Dylan for coronavirus as long as he is symptom-free or managing his symptoms. If he becomes ill, we have a quarantine plan that would allow Dylan to continue to follow his routine as much as possible with minimum disruption. I find it very reassuring to have conversations about such things and to have these plans in place.
Dylan’s Rainbow
For Dylan, support is everything at this time. His contact with me continues as normal, thanks to the guidelines which allow people to provide care for the vulnerable. Dylan’s relationship with support workers is also continuing as usual, due to good management and health practices in the home. Perhaps Dylan notices subtle differences in the way we interact with him. He has a range of games and rituals which involve physical contact, for example. I’ve noticed some members of staff pull back or move Dylan on (understandably) and sometimes I think I see a puzzled look in Dylan’s eyes.
One day, while out for a walk with Dylan, I pulled back myself. Half way around our planned route, we were taking a break. Suddenly, Dylan pushed his water bottle against my mouth. I flinched, pushed it away. I couldn’t believe it. What had been the point of my scarf and careful distance? If Dylan was carrying the virus, he had now certainly passed it to me. Then I saw Dylan’s face, looking dejected. Any other day I would have been celebrating his generous gesture. I had forgotten my water bottle that day and Dylan was simply trying to share what he had with me. Overwhelmed by a bittersweet mix of sadness and joy, I praised Dylan for this suddenly (confusingly) unwelcome social act.
Perhaps one of the hardest things to consider is something happening to me. Statistically I’m far more vulnerable to the virus than Dylan. The section in the NHS guidance about the importance of listening to parents/carers ends with a warning to ‘remember the carer they come in with may not be their usual carer at this unusual time’. I read the sentence twice, turning the various scenarios over in my head. I telephoned the manager of Dylan’s home: ‘if I become ill and can’t look after Dylan…’ I began. Next, I telephoned my daughter: ‘If anything happens to me…’ I began. ‘Oh mum’, she said, ‘don’t’. But it is reassuring to have such conversations; now, more than ever, we need to build circles of support around our family members.
Dylan has been helping to make a rainbow of thanks for everyone who supports him at the care home. It’s been great to see such support for the NHS and care sector in recent weeks; the rainbows and clapping have certainly captured the public imagination . This grim crisis has shone a light on care workers, in particular, and helped to build more understanding and respect for their role. Those who work in or use the care sector have complained about low pay and poor conditions for a long time. Surely supporting the most vulnerable members of society – the elderly and disabled – should be work that is most valued by society, not unacknowledged and underpaid? Maybe the crock of gold at the end of the rainbow is that coronavirus will help us re-evaluate our priorities, as a society?
Where does it End?
It’s a nice idea isn’t it? I would like to believe this might be how the story ends. While I don’t doubt there is strong public support for the health and care sectors, it would be easy to doubt the political will. In particular, some of the provisions of the Coronavirus Bill, which slipped quickly through Parliament at the start of the pandemic with minimum discussion or scrutiny – and which passed into law as the Coronavirus Act on 25th March 2020 – are a cause for concern.
The Coronavirus Act suspends the duties of Local Authorities (under the Care Act 2014) to meet the eligible needs of disabled people and their carers (Sections 18 and 20). Under the Act, Local Authorities only have to provide care if not to do so would breach the European Convention of Human Rights (ECHR). As access to care and support is not a human right under the ECHR, this opens the door for Local Authorities to withdraw health and social care funding from disabled adults. Other provisions in the Act allow for a delay in carrying out assessments for eligibility for NHS continuing care. How could I not be made anxious by the introduction of this legislation, given that Dylan depends on such funding?
You might say it’s cynical of me to suggest that the Coronavirus Act could pave the way for the removal of health and social care funding from adults with autism and intellectual disability. However, spending priorities will need to be reorganised, given the scale of the economic collapse, and it’s not inconceivable that removing the obligation on Local Authorities to provide health and social care will be part of the recovery plan. If, after all the rainbows and the clapping, we look to the most vulnerable in society to pick up the bill, that won’t be a crock of gold but an empty promise.
Key Document:
NHS. Mental health, learning disabilities and autism: Guidance. Coronavirus, COVID-19 (25 March 2020, Updated 9 April, 2020)
Dylan is in the habit of greeting people with a hand shake while out and about in the community. He doesn’t take the hand of every passing stranger, and he doesn’t do this every time he goes out, but if he sees someone he likes the look of he will extend a hand.
After the trip to Bakewell I suggested to staff at Dylan’s care home that he wear gloves on trips out. That should reassure the public, I thought. More importantly, someone pointed out to me, it would protect Dylan. While Dylan wouldn’t choose to put gloves on, he is quite happy to wear a pair if he is given them. That’s a lucky thing, I thought to myself.
As February gave way to March I turned my attention to plans for Dylan’s birthday. As well as a weekly programme Dylan has a monthly countdown chart and for weeks Dylan had been ‘asking’ when his birthday would appear. Dylan had been promised a trip, by train, to his beloved Durham and an overnight stay in his hotel chain of choice (Premier Inn). I had already booked the tickets and accommodation and on weekend visits home Dylan would check the documents were still on my desk and ask ‘Deeham? Bur?’
I wondered if I could persuade Dylan to wear a face mask. I trialled two versions: dust masks from the local hardware store and medical masks from Dylan’s care home. Not only would Dylan not accept either of them, he wouldn’t let me wear one either. This may be because the 
My anxieties about the journey proved unfounded and we arrived without incident. As well as an emergency kit I had packed candles and matches as the first activity on Dylan’s programme was to buy a birthday cake. We called at a supermarket on our way to the hotel. Dylan chose a Peppa Pig cake (I would never have got that right if I’d bought it in advance).
Dylan re-traced a familiar route through the city but there were changes since our last visit. Dylan’s favourite café had been re-branded and now sells Thai food. Dylan had been talking about the potato with butter and cheese he was planning to order for his lunch since we planned the trip and I felt my sharp intake of breath as I steeled myself for Dylan’s reaction. And is it the magic of being 26 that means Dylan can shrug this off, accept my proposal of the Cathedral café for lunch instead?
After years of renovation, the Cathedral tower had re-opened. Dylan chose to climb the 325 steps to the roof where he edged gingerly around the railings saying ‘whoops’. Inside, the university orchestra were rehearsing for a performance of Bruckner’s 4th Symphony. After our trip up the tower, Dylan and I sat for a while. A birthday blessing.
The next day, over breakfast, I checked the local attractions. Apart from the Castle, everything appeared to be open as normal. I suggested to Dylan that we take a walk around Wharton Park which we hadn’t visited before. From the Battery above the railway station we watched people waiting for the Plymouth train. I tried to count the peals of bells ringing out across the city. We walked down Sidegate to Crook Hall where the maze had thickened since our last visit. Dylan checked all the dead-ends before heading to the café for lunch.
The departing students and disappearing paracetamol were the only signs that we were on the cusp of change that weekend. An ‘essential journeys only’ directive was issued the day after we got home. The next day, the university where I work moved all teaching online. The following day, confirmed cases of Covid-19 in Sheffield reached 36. By the end of the week the schools had closed. At the weekend we were asked (and, when the public disobeyed, subsequently told) to stay indoors. Dylan’s birthday trip had turned out to be a last gasp before the collective intake of breath.
As I’ve mentioned 
But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .
Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.
Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication. There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely. As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.
I’ve written 
I am relieved to report that my request for a place at a National Autistic Society home for Dylan cleared 
Who knows to what extent this hotchpotch provision triggered 
When Dylan left his National Autistic Society school in the summer of 2013 a residential home was being established for school leavers who needed higher levels of care. Dylan was familiar with the setting as he had stayed there overnight occasionally (it was previously used for respite for children attending the school). Some of his peers would be moving into the home and Dylan knew some of the staff too. Naturally I requested a placement for Dylan, thinking it would offer a seamless transition to an appropriate setting.
Finally, after months of crisis and distress, Dylan’s need for such provision has been accepted; two years (almost to the day) since he left school, the NAS home I originally requested is the one that has now been approved. Although the home lies just beyond the city edge, I would have happily accepted somewhere within the authority had anywhere been suitable; indeed I pulled out of another 
I know that there will be challenges ahead for us both. Although I was relieved to receive the news I have felt utterly exhausted since and have had moments of terrible doubt and anxiety. I tell myself this is surely natural. On Monday night – the first day of Dylan’s placement – he stayed overnight at his new home so I could fulfil a long-standing poetry commitment. I wasn’t sure this was what I needed on the day as I felt tired and emotional. On reflection, however, it was an appropriate way to mark the start of this next phase of our lives, living more independently of each other. The poetry reading was also useful in distracting me from my anxiety and preoccupation with the new arrangement; better than sitting at home, fretting.
I can see that even with the extra challenges confronting a parent of a disabled child the ‘letting go’ still has to be faced and embraced. Our life together is changing, I tell myself, not ending. Although like Dylan I will live with autism forever, I will no longer be living with it in the same way. Over the next few months, therefore, this blog will change and in due course come to an end. It has served its original purpose and Dylan and I have grown beyond its focus.
I think this might be the last lap. At least I hope so: I’m not sure I have any reserves left for what has been a two year marathon. Since Dylan left school it has been a frustrating time of dead ends and disappointments. I have coped this far but am exhausted; if the finishing post moves one more time I doubt I could manage another lap.
If you’ve been following 
Unfortunately for Dylan the changes in his behaviour triggered further changes. Although one care setting has provided on-going support, other providers (including Dylan’s respite setting) felt unable to, given the changes in Dylan’s behaviour. Following a 
It’s not an easy road to be on if you are in crisis. Even when a setting has been identified the process of assessment and transition takes time. Something that has made these months particularly hard is the loss of Dylan’s respite. At the point at which I was in need of more support I got less. In fact I got nothing. I have written 
Dylan’s anxiety has been acute in the last few weeks and his aggressive behaviour has escalated. I have gone on trying to identify triggers but can’t always predict or head off incidents. I am no match for Dylan physically (21 and more than six foot tall, fit and strong) and after being hurt on a number of occasions I have learned to prioritise keeping myself safe. Recently, I have spent a lot of time in the garden where I go, now, to sit and wait until Dylan has calmed down. Sometimes it is five minutes, sometimes 50. Sometimes I am barefoot, sometimes better prepared. Sometimes it is fine, sometimes raining. Sometimes it is light, sometimes dark. Always I wait with my heart in my mouth for it to be over, praying that Dylan doesn’t hurt himself.
It took quite a lot for me to admit that I couldn’t keep Dylan safe anymore. Some people have suggested that I might get more support with Dylan if I didn’t appear to cope so well. You appear too competent for your own good, one friend told me. Well I was perfectly happy to admit, now, that I wasn’t. I couldn’t manage weekends alone anymore, I told Dylan’s social worker. Neither Dylan nor I were safe. For Dylan’s well-being and my own safety, I said, if I can’t access some support at weekends then I shall just drive away. I shall leave. I could hardly believe what I heard my mouth say. I wasn’t even aware that I had thought it. I certainly wasn’t sure I could ever do it. But in the silence that followed my announcement, I thought that this must be how breaking point feels.
It’s been a while since my last post. The fairly predictable rhythm of life with Dylan has been interrupted by the arrival home of my daughter. Last month she became unwell in France, where she had been living since September, and following emergency surgery had to return to the UK. Receiving a phone call to say your child is in hospital, especially when they are hundreds of miles away, must be one of a parent’s worst nightmares. It has been a stressful time but happily my daughter is recovering.
There’s an excellent interview with the Scottish writer Kathleen Jamie in the current issue of Poetry Review. I admire Jamie’s ability as an essayist as well as a poet and was particularly interested in her reflections on writing prose. Jamie does not think of her essays as ‘shrunken prose pieces’ but rather ‘extended poems’. Her essays, she says, come from the ‘poetry side’. The essay form, Jamie asserts, needs to be reclaimed from the academics to whom it was given over. For Jamie this involves downplaying the role of a ‘narrative arc’:
The first house was so sweet and tidy it made me gasp. Plump cushions in perfect order on the sofa. The chairs so soft! Alphabetical DVD collection. Pine table in the kitchen with heart-shaped ornaments and arts and crafts decor to die for. Oh this is lovely, I exclaimed, this is just so nice. I was making notes in my head: I could hang some dried flowers like that I suppose. Ooh. Nice teapot. Wonder where they found that. Love those tiles!
So let me linger with this narrative a little longer – long enough, let’s say, to return and taste the porridge. And this turned out to be smoother than expected; I found the house with only one wrong turn next time. The visit went fine and Dylan and I were relaxed enough to stop for a drink en route home: we can come here sometimes, I told him, when I visit you in the new house.
Daft isn’t it? But if I hadn’t let at least a little bit of that magical thinking into my heart I might not have questioned the narrative arc and made “a sort of handbrake turn in the middle of it”. And as it turns out I’m glad I did because, soon after, I heard about some new provision close to where we live. When I visited recently I let myself believe there might be a magical purpose to everything: If I hadn’t pulled out of the other place I would have missed this, I sighed. I am optimistic it might not be long before Dylan is checking out the beds.
Living with Autism 