‘Quarantine is agonising for my autistic son’

visits with family get-togethers, catch-ups with mates and a full evening of offloading with my best friend. It all topped up my emotional tank and I’d return to rural isolation happily reset.

But then coronavirus set in. My last Manchester trip was in mid-March and I realised that I needed to go back north before lockdown began. When Andy met me at the station, Glasgow was already lacking its usual raucous bustle. I knew I may not be going south again for a while – I thought maybe a month – and the idea of being forbidden from returning, even for that long, was alarming.

Due to his various autoimmune conditions, Andy has been designated as a ‘shielded person’. We’re now in separate bedrooms, and can’t touch at all. I find it impossible to sleep by myself; I lie awake worrying about my family till 3am most nights.

During the day, remembering not to throw myself at him for a consoling hug, or flop beside him on the sofa, is equally tough. For five weeks, I was the designated shopper, driving the 16 miles to the supermarket each Thursday for Andy and his parents and returning to spend two hours disinfecting everything. The bonus, however, was the brief excitement of human communication – a masked chat with friends who run the deli, the wry humour of a discussion about loo roll in the garage. Now, we’ve finally got an online delivery slot, which is safer, but I miss the shops.

I have cried a few times, though I’m never normally a weeper. When the dogs disappeared for over an hour recently and I thought they’d been stolen, I sobbed so hard I couldn’t breathe.

Their joyous normality is a lifeline. I imagine, like most of us, I have a well of unexpressed grief – for normal life, for everyone in danger, for all the people who have died and lost loved ones, and for the future. I miss human touch and human faces. Most of all, I miss my family. I feel guilty too, as currently my son is devotedly looking after two sets of grandparents, while I’m idling uselessly, far away. Even Zoom calls aren’t helping; after the first flurry of excitement, I found it was leaving me feeling emptily sad, rather than fulfilled. Like switching off an old TV, my world has shrunk from busy, colourful and loving to a tiny pinprick of light.

For now, I’m focusing on the small good things: the dogs waking me up, a book on my Kindle, a parcel arriving, a funny message from a friend. It’s not enough, but it’s far better than some currently have it. We have had our lives switched off, but if we’re lucky, at some point soon, they will be switched on again, and normal service – or at least a version of it – will be resumed.

Mothering an autistic person is like trying to put together a jigsaw without the picture on the box – there’s no owner’s manual. But it’s been especially difficult during lockdown. Quarantine is gruelling enough for we neurotypicals, so just imagine the excruciating confusion for those suffering from anxiety.

People on the spectrum may struggle with communication, OCD and chronic anxiety. They are often also Wikipedia with a pulse. My own vivid 29-year-old son Jules knows more about Shakespeare, the Beatles, tennis and movie stars than their own mothers. These days he also knows a lot about plagues – the bubonic, the black death, sweating sickness, zika, ebola, smallpox pandemics, influenzas, typhus, typhoid… you name it and he can tell you how many millions died and in what agonising ways.

The mother of a special-needs child has to be his bodyguard, legal advocate, executive officer making every decision on his behalf, scientist questioning all medications, and now, during the coronavirus crisis, also full-time shrink. The unfairness of the world’s plight rears up like a tsunami and crashes down upon my son’s head on a daily basis. The brutal death toll, the loneliness of the months ahead, his ruptured life including the enforced separation from his girlfriend and postponement of his job as an actor on the BBC medical drama Holby City, has him endlessly fleeing down some descending labyrinth of the mind. While many of us can self-medicate with chocolate or wine and lose ourselves in movies and books, for Jules the anxiety is always with him. His angst is constant, like tinnitus. It’s just always there.

Living with him is like living in a minefield – I never know what will touch a tripwire. And after weeks of lockdown I could qualify for a PhD in worry. Yet despite his dark moods, his quirky humour provides welcome relief from quarantining stress. He makes us laugh a lot. Ironically, despite government-enforced self-distancing, my family – like many others – has never felt closer. Jules may feel he’s drowning in his own brainwaves but love and laughter is our life raft.