An Autistic’s Experience of Coronavirus Lockdown

Monday 16th March 2020 was the last day of normalcy my family had before Coronavirus permeated our lives. It had been looming on the horizon, a new threat that only some were taking seriously, but up until that Monday evening we were still able to cling onto some cognitive dissonance: yes we knew Coronavirus was serious, but as the schools were open, gigs were still going ahead, and they were still debating whether or not to cancel the Wales vs Scotland rugby match just a couple of days before, it was easy to think that we wouldn’t end up like China or Italy.

The Friday before, Dan (my partner) got a cough. It was just an annoying dry cough, it didn’t turn into anything else, but he followed the (then) government guidelines and began a seven day self-isolation. We cancelled our attendance at my mum’s 60th birthday party, and I banished him to the attic (it’s converted into his study; I’m not that mean).

Monday 16th March, as per the guidelines, I took both boys to school. I’d spent the whole weekend soul-searching, wondering if it was the right thing to do, but despite people telling me that the schools wouldn’t penalise us if I did keep them home, my overwhelming need to follow the rules took precedent. A friend and I discussed the potential risk of me taking her eldest child to school (which is our usual set up), and neither of us could come to a firm decision. Her husband initially said he thought it was too high, before later settling on it being okay as long as we kept the windows open. At that point none of us were being given enough information by the government to make a truly informed decision, and I was still being made to feel like I was overreacting when I told people about my worries: that I have family members whose pre-existing conditions were likely to make them high risk, including my seven year old son.

By that evening the choice was taken out of my hands. The government announced a new wave of advice: if a member of your family has a new persistent cough and/or a high temperature (redefined to >37.8°C) the entire family must isolate together for seven days. That evening I contacted my friend and both boys’ schools to advise we wouldn’t be in for a week. Little did I know that it would be the last day they’d be in for the foreseeable future.

At that point my concern levels were still flip-flopping. Dan seemed to be fine, so we weren’t convinced he even had the virus, and thankfully both boys were (and remain) fine too. I spent that Monday evening planning what we were going to do for the week, and had a list of sites providing free resources for parents during the pandemic (a list will be at the end of this post for those who are interested). I spent Tuesday laboriously, and lovingly, printing resources for my children, making a robust timetable of activities so they could have some semblance of the routine they (particularly my eldest) crave, and putting everything neatly into subject divided folders. Really I was trying to grab hold of some control in my life as everything was changing at such a rapid rate.

This is the timetable we eventually settled on after multiple redrafts and several weeks of stress

I finished at around 4pm and felt awful. I thought it was just dehydration and brain fog from being in hyperfocus all day, but I took my temperature as a precaution – it was 38.4°C. Not too high, but high enough to be in the Coronavirus zone. I told Dan before crashing in bed exhausted, aching, and defeated.

The next morning I felt slightly better, though I felt like I had an elephant sat on my chest, and thought my temperature was just a bizarre error. I spent the day trying to get the boys to follow the timetable, but nothing worked the way I had envisaged. While I am well-versed on my children’s disabilities and fully aware of how these impact their access to education (both have funded 1:1 support in school) I still felt like a failure. The pharmacist couldn’t get Pediasure in for my youngest, and I started feeling quite helpless and trapped in our new world, and we were only two days in.

By Thursday I was feeling really rough. I was still trying to care for two disabled children (though obviously Dan was helping) but I had to go back to bed. I’m not someone who ‘takes to bed’ when ill. I very often say I ‘don’t have time to be ill’ and carry on with my life. With this, I physically couldn’t. The last time I felt this unwell was when I had glandular fever in high school – the school rang my mum thinking I had meningitis.

I spent the whole of Friday in bed, which meant that the boys weren’t being taught. During my small window of wakefulness, I sat in the garden. It left me breathless. It was at this point I started feeling quite concerned for my health, while being increasingly worried about what would happen if my youngest caught it. (He has a pre-existing condition called Alpha-1 Antitrypsin Deficiency, if you’re interested you can find out more about the condition here.) That evening he fell over. At that moment the worst thing about being ill was not being able to hug him. I had to stand there as he cried in pain, just asking him from a distance if he was okay.

The next morning, I felt a little better, though I later discovered that my body was leading me into a false sense of security, something that’s been reported by a number of people with suspected COVID-19. My chest started feeling like it had bricks in it, I still sounded like I had laryngitis though it was coming from my chest, and even lounging on the sofa made me feel dizzy. The next day was Mothers’ Day, and again it felt awful to not be able to hug my children and show the affection they’re so used to receiving. My temperature shot back up to 38.8°C, and I knew that I’d diverted off the road to recovery, and was on a really bumpy track with no idea of whether I was still going in the right direction.

At this point, several people had asked me to ring 111. However, stories of being on hold for over an hour, being cut off, and knowing that I wasn’t sick enough to need oxygen prevented me from ringing. A telephone-call-only system is not helpful for autistic patients, especially when the advice about when you can ring is so ambiguous. The way I understood it you needed to be unable to breathe to be considered worthy of calling, and at that point surely 999 would be the rational call to make?

It was the following Thursday (26th March) before I felt remotely better. Even now (11th April) my lung capacity isn’t what it used to be. I find that I have to clear my throat a lot more than usual, and I’m still quite breathless after walking upstairs. I can’t even sing along to Spotify because I don’t have good enough breath control to make much sound, let alone control it. Yet I was a lucky one. I was far less affected than many other people across the world. I still can’t believe that people aren’t taking lockdown seriously; I’m sure they would if they’d felt like I had. I can’t know for certain whether I had the virus as I wasn’t hospitalised so didn’t get tested, but I know a number of people in the medical profession, and all of them have said I had all of the classic signs and they suspect that I did.

During this time, it’s not only my physical health that took a battering, my mental health has been greatly affected too. I have had a number of meltdowns where I cried and screamed; where I said horrible things to those I love, things I don’t mean and have apologised for. I have hit myself in the head, and have banged my head against a wall and Dan had to put his hand between the two as a barrier (luckily this wasn’t in sight of the children).

The main triggers have been feelings of not being good enough and panic over things not going the way they ‘should’ be. The amount of work that’s been sent through by my eldest’s school is unmanageable, and it’s almost impossible to get my youngest to focus on any schoolwork at all. I’ve spoken with both schools, who have agreed that we can only do our best, but the seemingly constant stream of work is still coming through, and I feel like I’m doing my children a disservice whatever strategy I take: I either cause meltdowns for all three of us while I make sure all the work is completed (often badly), or we don’t try to keep up and they fall further and further behind their peers. While I know objectively there are many families who aren’t managing to keep up with the workload, my need to follow the rules and desire to ‘get it right’, coupled with my constant feelings of inadequacy as a parent, mean that I feel like a failure, regardless of what other people say.

The fact that my whole life has changed (as it has for the rest of the world), that I now have very little alone time during the day, and that there was absolutely no transition period means my sensory processing issues are at their peak, and I’m constantly on high alert. In a world where people hear at a volume of 10, I’m normally at a 20. Right now, it’s 30+. The increased need to communicate through speaking means that my verbal capability is worse than usual at the end of the day, and I often feel too exhausted to spend quality time with Dan once the children have gone to bed because it feels like I’ve been talked at all day and I just can’t take any more. Yet interestingly, though I’m often incapable of spending that social time with the person I love, I’m left feeling isolated as a result. It’s not that I don’t want to spend time with him (or anyone else), the situation that lockdown has put us in has stolen my ability to cope, and all of my energy goes in to making sure I have as few meltdowns as possible.

People mistakenly believe that autistic people are built for this. That because we’re perceived as introverted loners, lockdown is no problem. This is perpetuated by some vocal autistics online who are (possibly jokingly) saying that non-autistic people need to learn from us ‘experts’ – we can show them how it’s done. It’s simply not true for everyone.

This period of isolation isn’t just being at home having downtime. Our entire way of living has been changed to a format that’s unrecognisable. So many of the rules that have been brought in actively disadvantage autistic people, and that’s without the reminders that we’re definitely seen as ‘less than’ other people in society, highlighted in the case of the care home for autistic adults in Somerset who received a request from their health board that they obtain DNRs from all of their residents.

Autistic parents are having no respite from the sensory bombardment that comes with children. We love our children, we are great parents (particularly if our children are also autistic) but this doesn’t diminish our sensory sensitivities, our need for routine to go right, and the overwhelming anxiety the vast majority have as a co-occurring condition – we’re all still as autistic as those who aren’t parents.

The ambiguity in communications, both directly from government and that released by the media, is heightening our anxiety and frustration. The fact that they can’t seem to agree on what makes someone high risk, that they are (or at least were) lumping autistic people in the ‘fragile’ category when allocating a patient a score to see whether ICU is viable, and the rapidity at which the guidance changes is mentally unmanageable for many autistics. Yet those who are working are still expected to be productive. Parents are still expected to teach their children, all while we no longer have access to our support systems due to them being family and friends (if we’re lucky). The vast majority of autistic adults have no access to official support agencies, particularly if they’re deemed “high functioning” which – if the autistic community haven’t already convinced you is a fallacy as per my blog originally written for NCMH – this situation should demonstrate is, frankly, absurd.

Food shopping, which is the nemesis of many autistics, has become even harder. Not only are we no longer supposed to use grocery delivery services because we’re no longer disabled enough (and to be fair, there aren’t enough slots for those who are medically vulnerable, so I do understand it), people are being told they can’t take a partner or other family member in with them to help unless they receive PIP and can demonstrate the person they’re with is their carer. Autistic people are turned down for PIP the majority of the time unless they have co-occurring conditions. Even then it seems to be pot-luck as to whether or not anyone who applies can get it anyway, and most have to go to mandatory consideration or tribunal before getting accepted. Therefore, we (as is the case for me) don’t have the relevant paperwork, so we have to go. Alone.

When there, the system is so different it can cause its own issues because nothing is as expected. I found this video to be very helpful in preparing myself to go, and others may find it helpful too. The thing I found the most frustrating was other people not following the rules. I would wait patiently for the shelf area to be clear of people before approaching to maintain the 2m distancing rule, but other people cut in front of me, and I found I was waiting a while before I could get what I needed. That aside, the fact that fewer people are allowed in the shop at any one time did make the experience more bearable, so I want you to know that there are positives to these changes, though they may be few and far between.

The new queuing system to get into Tesco

Finally, I noticed my mental health was taking a hit when I realised I was having an increase in my dissociative symptoms (I don’t have DID but I’m on the dissociative spectrum). On Wednesday 8th April (week 4) I was sat on my sofa trying to read a book. I had been staring at the words jumping around the page for quite some time, and I knew something wasn’t right. I put the book down and looked around me – it was okay, the room I was in wasn’t real. That’s why the words were jumping around. I sat for a while longer waiting to wake up from whatever dream I was in, until I noticed the noise of the boys in the background. That grounded me enough to know that I wasn’t dreaming, that the room was real, and I went outside to try and do some more grounding.

It was a beautifully sunny day, and I could feel the heat on my shoulders and the breeze in my hair, but I still didn’t feel part of the world. I had been staring at the same walls for so long my stock grounding exercises just didn’t work, and I knew I needed a change of scenery. We are all allowed one government approved period of exercise outside the home every day, and while I’d been too anxious to use it until this point, I knew it’s what I needed to try and reset how I was feeling. I left the boys with Dan, and went for a walk to the park. I stayed away from people. I silently judged sunbathers, but didn’t judge others sat on benches, alone, possibly needing to rest before they could walk home. I saw grass and blossom and ducks and trees and a pond. I felt the difference between the path and grass underfoot. I felt the breeze in my hair and the sun on my shoulders. I felt connected and present for the first time in a while, and I know I hugely benefited from going. This is now one of the entries in my ‘Coping with Coronavirus Toolkit’. The toolkit will follow this blog in case some of the ideas help those of you who have made it this far into, what has turned out to be, a very long post.

I have been posting daily updates on Facebook, and have periodically been reminding people that what’s posted on social media is a polished end-product. The meltdowns, the fatigue, the worry is often hidden in the photos of productive children and smiling faces. I hope this post reminds people that many of us are struggling, and that it’s okay – we’re all human. I also hope it makes those autistic people who feel like they’re ‘failing’ because they’re not loving the solitude as so many other autistics claim they should be know that they’re not alone in this feeling. There’s no right way to be dealing with this, but if you’re really struggling, please find links to agencies who can support you during this time.

Toolkit

  • Listening to the Coronavirus playlist Dan and I created on Spotify. It may seem crass to some, but I’ve previously written about how I deal with emotions by listening to songs, and it does help to think about songs whose titles or content could be added to the list.
  • Virtual pub at the weekend with mum friends from school. The normal pub often scares me, and I only accept invites out from people I really trust, and if I’m in the right headspace to go. This is different. Our ‘pub’ – lovingly called The Dirty Duck – is a space for us to all talk to one another, air the issues we’re having with parenting, work, or just being in this topsy-turvy world, and provide support to one another while having a laugh. It may not be for everyone, but don’t discount it just because you wouldn’t usually go ‘out-out’, staying ‘in-in’ is far more fun, and much easier from a sensory and social perspective.
  • Going for a walk. This I’ve only done once so far, but it was so helpful it’s made its way into the toolkit. I’m hoping to get out again today and see some grass as greenery is one of the things that’s certain to ground me.
  • Sitting in the garden. The fresh air, hearing the birds sing and the bees buzzing, and just being in the sun (wearing factor 50 due to how easily I burn) is incredibly helpful. I know I’m privileged to have a garden and not everyone is that lucky, but if you do have one you should definitely make use of it.
  • Reading. If you have the attention span (I often don’t, but when I do it’s great), reading is a really helpful way to relax as your brain and hands are still active, so it’s more difficult for your brain to move to anxious thoughts.
  • Watching a familiar television show or movie. The familiarity really helps, and it doesn’t matter if you can’t give it your full attention.
  • Autistic UK Covid-19 Crisis group on Facebook. We’re updating the group with articles, resources, and contact details for support agencies still operating during lockdown.
  • Knowing I can contact my Community Mental Health Team and their Crisis Team if needed. Again, not everyone has a CMHT, but if you do they should still be open for telephone support. This isn’t the best method for autistic people, I know, but if you’re in crisis and you do have access, please try to contact them, or ask someone to do it on your behalf. They may even have an email address you can use instead if you’re non-speaking, or have periods of being unable to speak.
  • For those who need immediate support and don’t have access to a Crisis Team, the Samaritans are there to help. There’s also a text service called Shout who offer 24/7 support if that’s more helpful.

A selection of free education resources

Before you access the links, please remember:

Twinkl

The Maths Factor

Audible

Dyson Science and Technology Activities

Minecraft Education (free for all pupils in Wales through your child’s Hwb login details) – however a lot of the educational resources have also been released for free in the regular Minecraft store.

2 thoughts on “An Autistic’s Experience of Coronavirus Lockdown”

  1. This post made me sob with relief that it wasn’t just me struggling with this. I feel bad because I’ve not been as ill as you and my children have long since left home and have their own families. But that intensifying of autistic symptoms – I’m struggling to visually focus and sound is unbearable. And the daily meltdowns / shutdowns. And shopping… how do you even start? So thank you for your post. It clarified / explained such a lot. Take huge care and thank you again.

    1. Thank you so much for your kind comment. I’m glad the post helped. I often find that knowing someone else is going through the same thing makes it easier to cope, despite not wishing the feeling on anyone else.

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