Hunkering down on our bit of rubble as the coronavirus earthquake erupted, I might have predicted a regular picking up the pieces of Isaac and putting him back together again. Grimmer ground dog days than for the rest of us surely hung in the air for him.

The autistic un-friendly features of a lockdown are too long to list, its tentacles too many – from plans and routines fallen into ruin, to social distancing splatting itself on an already ruptured spatial awareness, to the abstract yet anxiety inducing nature of a virus itself. Like so many, Isaac has often been caught in the coronavirus crosshairs, where tantrums and tears seem terminal:

“I’m not filming trains and it is so bleeping important. I know the swear word dad which adults can technically say, and I’m not bleeping saying it, but I know it!! I can’t even hear the psshh sound of the London Underground 2009 stock as it travels on the Mill Hill East line, which relaxes me, this is so a-nnoy-ing, I can’t cope!!” will be one of dozens and dozens and dozens of breathless, heart rending loudly broadcasted laments.

However, so many of his struggles are of course universal. The mayhem of mainstream home schooling resides everywhere. Sibling battles that are beyond the wherewithal of any Parental Peace Treaty. Lack of structure and mental health problems are bedfellows that can awaken and ensnare each and every one of us. Not to mention the physical horror of the virus itself.

Realtime chronicling of its capacity to dominate our world is obviously ubiquitous. Isolation impacts each individual differently I’m convinced; “this damned isolation dad!” Isaac warbles, tensed and shaking, “all these empty seats at this stupid table for Shabbat, with no family visiting our house for Friday night Dinner. I’m finding this hard. It’s good to see people more often, please!”

The considerations for many in the autistic community, though, have a critical nature, that my family is so fortunate to not be facing head on. Bigger and more important brains than mine are discussing, lobbying and campaigning. There’s a much needed emphasis on a wide and desperate group of people and families in real crisis without specialist care, unable to access food, basic healthcare and more.

Simply contemplating families in the diagnosis process, whether at the life-shifting pre or post stages, I croak at the thought of squeezed services, inaccessibility and helplessness; of people in urgent need of intervention that’s impossible.  Nostalgia for Isaac’s early years is a natural no-no for me at the best of times. Isaac knows and feels it too. “Me as a screaming toddler was hard, I had a difficult life,” is one of his pinch-me-did-that-just-happen comments he made to my wife recently.

There’s no whipping out the rose-tinted glasses, spinning yarns of crawling, talking, first days at school. No kids at feet, no me smiling-in the wide eyed listeners for jackanory-time.

But if any rose tinted glasses I had before were of a real hue, I’m now in possession of much darker ones so influenced are they by what people are going through right now; a grainy realism, showing the awfulness, high definition despair and distress. The complementary work of charities such as Ambitious about Autism, Autistica and the National Autistic Society has rarely been so pressing. I urge all to support them where possible.

From a purely personal perspective though, whilst the rudderless days may have anything-but-breezed by, they have done so in a way that is bearable for us and, more importantly, for Isaac.

Because there’s a kind of interchanging ‘magic three’ formula holding him together, an alliance of constituent parts, the sturdiest of tripods to keep him from tumbling:

Beginning with his understanding school who helped him to comprehend the situation early; then my miracle making wife, Eliza, performing the role of head teacher and ringmaster to keep the Isaac show on the road; finally, the young man himself and his sustaining coping mechanisms.

Such are Isaac’s school’s levels of appreciating autism and wide-eyed view of the world, they made him be alert to coronavirus, grasping it to the best of his abilities at a crucially early stage. The window, its gap barely visible, was seized by quickly creating social stories about this “strange thing called coronavirus” you cannot see but can avoid by planning and protecting. Not scary but so straightforward. Visuals that told of washing hands. Not fearing the word “maybe” and dealing with uncertainty. Bit by bit, a foundation was laid in his head way before lockdown.

Weeks prior to the Queen taking to our screens, Isaac took it (completely) upon himself to educate us. Utterly unaware, assuming as usual he was filming trains from our local and secluded Northern line viewing bridge, he self-authored an “important announcement” and subsequently uploaded it to his YouTube channel.

Delivered direct to camera with the sincerity and gentle authority of a 1950s public information film, this mini Macmillan implores us to “wash our hands whilst singing happy birthday to Boris Johnson, twice!” (hence inadvertently squeezing out a smile for the audience – his idea and he loudly does it himself always) and “stay at home at all times, relax and so forth”.

These times are rocky territory of course; a detached “will I die if I touch someone with the coronavirus, dad” has been one of his disarming queries. And with isolation and social distance, his sensory needs seem to have skyrocketed; I’m the tree to his swinging chimp as he grabs handfuls of me by squeezing, pinching and hugging to help him in this atomised world; I’m too often ruffled by this. Though brilliantly, when out and about, his bringing down of social etiquette is most welcome; like a cop screeching, “stand away for the vehicle,” so he declares to any passing stranger “social distancing please, avoided, success!”

If the school built the knowledge, Eliza applies it attentively and empathetically. His favourite foods and a form of structure are givens. There’s a flow of steady, without being excessive, rewards (books that inspire predominantly, helping his learning like “Kids that dare to be different”) plus pictures of Jessie Nelson from Little Mix pictures – Isaac is her latest groupie, “her hands and voice make me faint, not her cheesy music – what’s your favourite song?”). All in all, Eliza is leading Isaac through the limitations of lockdown in so many ways; for example, reassuring chats about knowing “it’s hard, I understand” – a precious currency that could run out but won’t – just one of many tactics.

Plus, as we plough on through this second tranche of home schooling, she’s taking an approach that liaises with the school – life saving thanks to their compassionate support – and demands a so-hard-to-grasp lightness of touch (his sister more willing and wanting but equally demanding patience and perseverance).

For Isaac, the dissonance between home and school life is so acute. Two separate entities. Fusing would normally be too a far-fetched an idea in terms of activity, friends, any contact, any thought.

Yet working cooperatively, dipping into a daily routine that’s bookended by virtual assemblies, there’s success of sorts, a degree of calm. Worksheets can be completed, excerpts of Harry Potter read, Horrible History episodes watched. Mixed with the right number of online interactive sessions – individualised speech and language therapy, book reading, life skills – nourishing and necessary parts of his curriculum working wonderfully.

And then there’s Isaac himself.  

The writer, Nick Hornby, has an adult autistic son, and I know his experiences and challenges have a barely audible resonance with my own, a whisper of sameness in a world of contrast. Yet, he once said something that, whilst used sensitively and seeking answers for him, in this mixed up world, has been revelatory for me:

“When autistic kids are left to their own devices, a lot of them would be perfectly happy.”

Because when I wrench his words out of context, somehow suitably in keeping with these out of the ordinary times we are in, it demonstrates a defiance in Isaac, a strength, a survival mechanic even. Sure, “when left to their own devices” highlights the many repetitive behaviours, doing the same thing over and over or stimming (self-stimulating, flapping, waving, jumping etc.) – and therefore a need for intensive and tailored treatments – an undoubtable truth. But in this moment, there’s elements of “his own devices” that are saving Isaac to an extent, in a way peculiar to autism – boosted by that coronavirus comprehension I’m so grateful he has.

Because his reservoirs of music and train enthusiasms are so deep as to drown out any typically (not really him) pre-teen needs to knock about with mates, roam around, conventionally socialise, have daily doses of spontaneity. Indeed, his independence has a flavour of doing his own thing; our presence plays a role admittedly, but the well-kept rules and regulations are ones he craves, like how his daily outing happens (timetables and planning being key) – the walk, scoot, wave to a neighbour, spot of a bus, filming of the car radio display.

His music enthusiasm, that I’ve touched on before and will no doubt do so again in the future, is acting as self-medication for him. Its fuel for his big brain and, even more so, his rampant repetition and obsession for over-and-over-ness. Like an anorak at an analogue record shop, his library of encyclopaedias, such as the historic “1001 best albums”, has been devoured; an indiscriminate love of pop, dance, rap – who knows – means all radio stations and apps are listened too. Music from all eras and genres, running into the HUNDREDS, has, and is, being memorised; with the information all regurgitated and on repeat. From Capital to Heart to One Extra, whatever comes on, he knows know the name of song and artist the split second it starts:

Every day new music facts join an ever growing long tail; learnt whilst in his own separate space and poured out whilst in my personal space – the questioning posed but closed. We try to manage but he’s pretty unstoppable.

He courts confirmation in the forms of simple nods. Every question about every artist and song comes with riders of do I know them, did I listen to them when he was born, are they English or American or from somewhere else.

A few examples off the top of my head:

“Hmm, unusually, the singer Bjork is Icelandic but with this strange accent, singing Army of Me, Venus of a Boy and so on. You know her, yes?”

Or:

“And Sean Paul, yes, he’s a Jamaican gentleman. Knew him when I was born? Before and for how long? Temperature is a good song.”

And:

“The band Biffi Clyro. Ah, yes, Scottish people. Now let me see – perhaps I shall sing their hit song Indeed at the next Open Mic at school. Bye parents, I’m off to sing it!”

Because as well as vocalising specifics, he’s singing songs themselves. Extraordinarily so:

“Hello all!” he’ll say, bounding into the room, “now I’ll sing you the song Roses by Saint Jhn – capital S then lower cases, then finger space, the capital J, then lower cases remember! He’s 33, from the USA, but of course Guyanese-American, you see his parents are from Guyana.”

When singing any song, the workings of his photographic memory simply adapt into a multi-track audio format. Every stem – drums, bassline, melody, vocal – laid in his sound bead head and reproduced via the medium of clicks, sways, high and low pitching, audible breathing and one heck of a voice. His replications of recordings bewilder me every time or their accuracy. Sound for sound, word for word. His set is multiplying by the day.

And in tandem with music, there’s the enthusiasm for trains. As the platforms emptied, services reduced and journeys were out of bounds, my ingenious wife fast forwarded delivery of his Bar Mitzvah gift: the mini desktop departure board.

The most arcane bit of kit known to man, the spotter’s beam of brilliant light when they can’t alight, it is a live feed of every single tram, bus, tube and train journey in the UK. You enter a station or location, and then up pops (in identical dot matrix display – important!!) the words you’d see on the platform board. Times, arrivals, when on platform, when departing. Whilst trains run, there’s activity to be seen.

Like a finger-on-watch tapping PA, he invites me at organised times in the day to spend (considerable) time in “the relaxing Isaac lounge, aka my room, ah I love this place”, for some desktop departure action:

“Right, dad, where are we going to?”

“Ah Bodmin Park way, yes. Look! Paddington at Platform 8, in 5 minutes… yes!! It’s arrived. Now wait for it…and ta-da it’s departing!”

Whoops, hollers, little clap-claps-claps follow as he delightedly and virtually gets his fix of transport action, often filming the display, always announcing, “this is a miracle, so amazing, I love it!”

The pinnacle of contentment was reached recently as a delighted Isaac, on his daily outing, scooting along, liberated in the in the empty streets, communicating the ultimate: a coming together of trains and music.

“A J Tracey, uses explicit language – he has a bad attitude! But he sings his wonderful song Ladbroke Grove. Do you know The Streets? The lyrics Mile End to Ealing, From Brixton to Bounds Green. Music and trains, dad! Music and trains!

And now, video me please, it must be a landscape shape, my A to Z of the underground rap.”

Which was just that, him spitting rhymes, properly rapping each of the 270 tube stations from memory and in order. What a distraction from these difficult times.

As we know no exit, this is his life as I write. Things will change. His chat with the outside world has recently suddenly surged as he feels confident retreating into his room and roaring with laughter with ‘one’ friend, many cousins and close adults. One on one and Isaac is one in a million; he makes their day; WhatsApp and voice notes – walkie-talkie 2.0 type controlled messaging – as opposed to Zoom and FaceTime work so much better for him. And a better and happier Isaac is one we naturally want to prop up and pacify. That Eliza, school and himself have been doing so perfectly.

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