Letter from lockdown
A few weeks ago, I lay in bed feeling my skin prickling and cooling as the morning air dried a sheen of sweat from my skin. I was waking after an intense dream. A cinematic, hyper-real romp that seemed to have a lightning designer and a director of photography. In a tightly-framed sequence, I watched an instalment of dream-news in which a generic newsreader told of mounting deaths and inevitable doom in grave tones: a deadly pandemic was gaining ground. My brain took me on a wild, tilted rampage through a lurid health panic that felled my nearest and dearest. And then I woke up to the “it was all a dream” trope, but with a depressing reality twist.
Later that day, the real life pandemic began to unfold in earnest. Coronavirus cast its shadow over our chalk-edged island. WhatsApp groups thrummed with digital missives speculating about an Italian-style lockdown and my heart sank. Of all the Italian-style things I enjoy (coffee, ice cream, salad dressing), stringent lockdown measures are way down the list. Yes, I’m a book-reading introvert with a room full of craft supplies and a love of baking, but...Spike. A lockdown was, theoretically, Spike’s worst nightmare come to pass.
I started mentally planning for how we would address this with Spike. Distract him and hope he doesn’t notice? This would not work: he notices everything, not least the failure to comply with one of his fundamental mandates: a very well-established, self-imposed rule that he must leave the house once a day. And when I say “must”, I mean “must”. Other parents of autistic children will know what I mean.
Perhaps we should just sit him down and give him the news - no going out - undiluted, straight up. Deal with the fireworks at the outset in the hope of calmer times, later. This seemed akin to planning an act of actual violence. The best approach was probably somewhere between the two. We have a garden - thank goodness. Unhelpfully, Spike maintains that the garden does not count as “going out”, but it would have to do.
My memory cast back to a couple of years ago when both boys got the proper flu. The sort that adults get and say to themselves. “Oh! This is flu.” Oz got it the worst and was laid up for 2 or 3 weeks, missing the end of Christmas term and the related festivities. Well, not all. On the last day of term, his classmates and teachers descended on our front door to sing Oz Christmas carols, their arms laden with cards and gifts. I can remember sneaking a look at his face and having to choke back embarrassing mum sobs. I had never seen him look so happy. He was almost levitating with joy.
Spike, as is his way, seems to resist illness, sticking to his routines and declaring “I am NOT sick!” until the lurgy gives up and wanders off to find a more willing host to infect. In this way, he recovers more quickly than most. He still had a week of high fevers, no appetite, sleeping for chunks of the day, and only intermittently through the night. Despite being quite poorly, he would occasionally emerge from a feverish stupor to say “Have I been out today?” and understanding our hems and haws to mean that he had not, would get very upset and protest “I DON’T want to stay in ALL daaaaaay.”
On more than one occasion, I bundled him up in a big knitted blanket and put him in the back seat of our car to drive him around the block so that he would not have a meltdown. It felt wrong doing this, knowing he might be contagious, but we did it at night and did not linger in public spaces. In the five or so years since the Must Leave the House rule came in, I think we have only flouted it once, during that period of sickness. An enforced and/or total lockdown would not permit such sheepish smugglings.
Of course, in the end, our lockdown has its own flavour and restrictions have not been as fierce as the lockdowns of Italy, Spain or China. While it is debatable whether our vanilla lockdown has been fit for purpose, it was a small comfort that we stood a chance of avoiding the emotional equivalent of those pressure cooker explosions which were popular in the 1970s. No meandering bus and train journeys, but we could still go out - occasionally, and in a socially-distant fashion but, out.
From Spike’s perspective things are obviously still far from normal. Adventures have been cancelled, routines binned, things which absolutely should be open are very much shut. These things can matter to autistic people (of all ages) very much.
It was as schools geared up to close their doors that I first drove past a shuttered tube station. An unhappy development. Closed underground stations are anathema to Spike. As I have written before, he considers the London Underground a vital system. The vessels through which his equanimity flows. I think the knowledge that London’s transport network is running correctly, grumbles away quietly and reassuringly in the background of Spike’s psyche, like the familiar noises of your fridge and central heating system when you curl up on your sofa at night. Historically, a closed station was something akin to an arterial clot and we have weathered several ‘system collapses’ when Spike has encountered a closure without prior warning.
Fortunately, the All London Underground Stations Must be Open rule has softened over the years. We have established that the closure of Ladbroke Grove, Latimer Road, Queensway or Bayswater is regrettable, but not the worst thing that could happen. The closure of Notting Hill Gate would be beyond the pale, but some frantic Googling on my part suggested this was unlikely to happen.
As a parent, it was the shocking, dramatic closure of schools which crystallised the reality of the pandemic. Spike was more sanguine about this development. He does not love the experience of school, overall. He benefits from the structure and texture it provides to his days, but that is not something he can knowingly appreciate. Each day, he eases himself into the melee of his classmates (“my kids”, as he calls them), naturally gravitating towards the small handful of children who have easeful interactions with him and appreciate his Spikeness (although, for the record, they are all good kids). As time has gone by, his ability to take part in the business of school has increased. At this point, school is much more than just a change of environment, or a testing ground for newly acquired skills. But, I was reasonably confident that Spike would not miss it too much. Nevertheless, like many things in Spike’s life, he does like to know they are there. Is a closed school sufficiently there, I wondered to myself?
We are exceptionally fortunate to have two highly-trained, brilliant assistants who support Spike’s learning in school and at home (he has a somewhat flexible timetable at school and some of his learning has always taken place at home). So, as many children and parents were getting to grips with the notion of homeschool, to some extent it was business as usual for Spike. His assistants have been crafting and curating a fully differentiated daily dose of maths and English, which is delivered to my inbox, in person or via Zoom. School have been a positive presence, keeping in touch and cheering Spike’s achievements, even in lockdown. We’re lucky, I know.
In the last year or two Spike has understood and embraced the concept of “temporary”, often using the word to seek confirmation that some undesirable state of affairs is not going to last. This was a useful development under the current circumstances. Being able to explain that the shops, stations and schools were closed temporarily, offered Spike immediate, succinct reassurance which has carried him through the past couple of months.
Spike does not seem to be missing people very much and I am glad that he is spared that particular emotional challenge. He is missing his assistants and certain regular socially-oriented trips that we make to visit family friends but he seems, otherwise content to pick up with people as and when. Occasionally, his self-containment strikes a tiny sad note for me, although it may be that his social needs are satiated at home. We are all here, all the time - more or less in the same room. If he feels anything like I do, he may welcome a little less people time.
A week or so into lockdown, Spike and I trundled away from our house on our cargo bike. Spike surveyed our deserted neighbourhood which seemed wide and quiet in the thin spring sun. We headed for the edges of Mayfair, skirting Hyde Park which looked unsettlingly busy. Our destination was Park Lane. I was happy to be moving my body and having Spike contained in the box meant I worried less about him straying too close to other people or touching things I’d rather he didn’t touch. I felt relaxed. We parked up for 30 or 40 minutes as Spike reviewed the bus situation. Having deemed it satisfactory, we saddled up for the return. Spike gathered in his shoulders and pressed his hands in his lap.
“I didn’t touch anything. Does that mean the people with the virus will feel better?”
I reassured him that he had done brilliantly and that by being careful, we were helping everybody. He is not in love with having to wash his hands all the time, and as we arrive home, after a cycle around the block or a neighbourhood walk he announces “I don’t want to!” before I can open my mouth to request the inevitable. “Wash your hands”, I confirm. “Uuurrggh”, he’ll groan, already marching off to his ablutions without further resistance.
Coincidentally, our current reading reflects the public mood. We’re coming to the end of Polly Ho-Yen’s marvellous “Boy in the Tower” which follows Ade, the young resident of a top floor flat of a London tower block that he shares with his agoraphobic, depressed mother. This already difficult situation is made immeasurably worse when the buildings around Ade start to fall and people begin dying in mysterious circumstances. Quietly observant, Ade suspects that the appearance of strange plants might have something to do with it all. Spike is rapt by the unfolding events, and the parallels between Ade’s lockdown and his own clearly resonate with him. On our neighbourhood sojourns we discuss the differences between the enemy plant in Boy in the Tower and the enemy virus at large in the real world. The deadly spores released by the blucher plants have provided an easy analogy for the virus, and have helped Spike to understand and comply with the measures we are taking to keep the virus at bay.
I am interested to observe the things Spike has not noticed, or at least, does not find worthy of comment - people wearing masks for instance. Faces have never ranked highly up his Objects Worthy of Study scale. Those malleable, moving feasts of confusing information seem best glanced at. Ovals of too-much-information. It does reinforce my belief that other physical features are more important to Spike than faces. The overall shape of a person, the colour and style of their hair, the clothes people typically wear. It would explain why Spike has certain rules about clothing. For example, he can get quite agitated if my husband wears shorts or tops with short sleeves, perhaps because he wears them infrequently and their appearance tugs against Spike’s idea of what Daddy looks like.
As the pandemic unfolded, I was worried about what the inevitable changes would mean for our family, and for Spike in particular. In Spike’s eleven years, life has not thrown us any insurmountable challenges and I trusted that we knew him well enough, and he us, that we would be able to figure things out. But I anticipated that it would be a process. I had not counted on his simple acceptance of these profound changes. I found myself asking “Why is he so cool with all this?”
I don’t really have the answer to that. It is easy to put it down to a lower demand environment (home vs. school), but the uncertainty, lack of treasured routines and restorative adventures take their own toll, so I don’t think that’s entirely it. There may be an element of his ‘reading the room’. The changes wrought by the pandemic are so wholesale and ubiquitous that perhaps he understands the absolute nature of it. That you cannot argue with a virus. On social media, some people who suffer with anxiety speak of finding themselves feeling unusually calm in these turbulent times. On the face of it, these are Spike’s people. He has a tendency to catastrophise and his calamity radar is (over)sensitive. An abbreviated list of the things that perturb him on a daily basis might include:
barbecues
broken things
burglars
closed things
dogs
fire
fire alarms
flags
hand dryers
jail
moths, butterflies and flying insects
printers
pub signs
Perhaps seeing his anxiety reflected back at him in the heightened emotions of the general public and their drastically changed behaviour has disrupted some kind of unhelpful psychological feedback loop. Of course, I hope that a little of his vibe is derived from the fact that we have primed and prepped him well to cope with challenges.
These pandemic days feel loose and unpressured. Without the urgency of the school run and the post-school emotional splat pressing in from each end of the day, we have time. Spike’s waking hours are reasonably balanced between school work, neighbourhood jaunts and free time. He has, over the last few years, become very adept at keeping himself occupied in a constructive way, which has been a boon in these weeks of lockdown. Yes, screens have featured heavily, but he is not one for extensive passive consumption. Instead, he is building a train wiki, and re-writing the plot of Paddington 2 substituting members of his family for everyone except Hugh Grant (I don’t blame him for keeping Grant - his Phoenix Buchanan was exemplary). I am quietly, a little guiltily, pleased that Spike’s lack of access to hand dryers has caused him to return to his formerly-beloved trains. We take regular trips to the vicinity of a nearby station, where he sits in a tree and commentates on the locomotive comings and goings. He is drawing train after train each day and he is good at it. And very casually, with little fanfare, he has learned to ride his bike.
While real life came at me like a sucker punch the morning after my virus dream, my overwhelming feeling, then and now, is one of gratitude. I am mindful of my family’s enormous privilege which, in the absence of infection, has insulated and cushioned us from the worst repercussions of the pandemic. There is the luck of timing. Spike is eleven and we (his family and the various wonderful individuals who have given us the benefit of their professional expertise) have spent years getting to know him, helping him to understand himself and to develop his ability to be in and communicate with the world around him, and our ability to support him. Having to deal with an advancing tide of invisible scraps of genetic code, intent on perpetuating themselves at human cost during the fraught, friable time around diagnosis does not bear thinking about. But I am acutely aware that is exactly what some families are having to do.
The chasm between ourselves and the less fortunate has never seemed so big. We are all facing a complete or significant withdrawal of therapy, support services and respite. I think, often and despairingly, of the families bottled up without our resources, particularly parents/carers of those with a limited capacity to understand these exceptionally weird times, and families living with severe challenging behaviours. Those things are hard enough at the best of times and a global pandemic strays well into the ‘worst of times’ category. As a brief sidebar - now would be a great time to support autism charities. I’ll leave some links below.
This morning Spike woke, smiling before he had even opened his eyes.
“I had a good dream.”
“That’s nice. What happened in it?” I asked.
“I was at Aunty Cheese’s house, lying on her bed with the cat.”
He did not need to articulate that a day spent like this would be dreamy. I would like to go to Aunty Chi’s house, too. I would like to perch on her kitchen stool and share our news, with Ben and Uncle Alex teasing apart the world’s problems at the dining table and our kids playing happily, dragging us into their epic builds, bum jokes and meanderingly imaginative home videos. Spike has always appreciated the simple things, but the pandemic and its lockdown has brought us - and, arguably, the world - into alignment with him.
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