For autistic children like my daughter, coronavirus is a nightmare come true

Ever since my 10-year-old daughter found out her school was closing due to coronavirus, she has been crippled with agonising stomach pains. It isn’t a symptom of the virus or even another bug she has picked up – it’s severe anxiety caused by the uncertainty that lies ahead.

Sophie, like 100,000 other children in the UK, has autism, and for her the unpredictable nature of the virus and the massive changes it has brought about is her worst nightmare come true.

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My daughter thrives on routine and finds change very unsettling. As a parent, I thought my biggest challenge this year was going to be preparing her to leave the safe haven of her small primary school to head off to a new life at a big and bustling secondary.

Her teachers and special educational needs coordinator (SENCO) had been busy putting strategies in place to make this transition as smooth as possible, but when she walked away from her school playground two weeks ago, I knew there was a good chance she might never go back as a pupil. I still can’t bring myself to tell her she might never get to finish year six with her classmates or that the prom they have all been imagining for years won’t happen.

For Sophie, things are black and white with no grey areas, so she was devastated to find out she wouldn’t be able to sit her SATS – on hearing the news, she curled up into a ball and wept so hard I could feel my heart breaking. The idea of sitting mocks but skipping the real thing has shaken her sense of reality to the core – it is a sequence that can never be finished, and she’s been left her feeling like the entire academic year has been a lie.

Sophie also has a tendency to catastrophise, which means her brain quickly flits to the worst case scenario in most situations. As her mum, I am used to talking down these thoughts. But how do you reassure a child prone to catastrophic thinking when we are in the middle of living what feels like the first half of an apocalyptic disaster movie?

Sophie needs clear goals and a recognisable routine to thrive, so that’s what I’ll do: grit my teeth, draw up a timetable and hope for the best

All she wants is for everything to go back to normal or, failing that, clarity on what will happen in the future. I can give her neither of those things.

​I love my daughter more than life itself but her behaviour can be intense. If something interests her, she can (and will) talk about it non-stop, and she likes to micromanage everything around her – including her three younger sisters, and at two, five and eight, they need attention too. School gives us all a break from each other and living in each other’s pockets will likely bring more than its fair share of tears, meltdowns and frustration.

As I work for myself, I’ve had to make peace with the fact I am not going to achieve much during ‘school hours’. Instead, I’m burning the midnight oil to hit deadlines and squeeze my workload into evenings and weekends. 

The lack of school isn’t our only challenge. Panic buying has swept the shelves clean of most of the foods she eats as part of her highly restricted diet. It seems most of the population share her passion for baked beans, pasta and chicken nuggets so I am having to carefully ration what we do have and keep searching the shops for more supplies. Trying a new food is a big deal for Sophie and not something she would be able to do in a state of heightened anxiety – given the choice of starvation and tucking into a shepherd’s pie, she’d go for the hunger strike every time.  

I never wanted to home school her and left to me, I would simply take each day as it comes. ​I already knew her teachers worked hard but now I realise just what challenges they face. Sophie needs clear goals and a recognisable routine to thrive, so that’s what I’ll do: grit my teeth, draw up a timetable and hope for the best.

I am lucky that her school has sent home lots of resources so we have plenty to go on and we’re starting the day doing PE with Joe Wicks on YouTube, followed by reading, maths and English. Afternoons will be a little more flexible – I hope we’ll be able to have a go at everything from baking and gardening to watching live feeds of animals at zoos around the world.

Beyond that, it’s hard to know what could help families like mine right now. Better financial support for self-employed people might ease my financial anxieties, and clear, regular updates on the situation would help us manage Sophie’s expectations. 

But the reality is that the lockdown will be tough on us all. All we can do is our bit by staying home and keep everything crossed that it will be safe to return to the classroom soon.

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