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Link to original content: http://www.telegraph.co.uk/family/parenting/like-parent-child-autism-lockdown/
What it's like to parent a child with autism during the lockdown

What it's like to parent a child with autism during the lockdown

For World Autism Awareness Day, one writer explains the toll that the coronavirus pandemic is taking on autistic children

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A few months ago I dropped my eight-year-old daughter at breakfast club a few minutes later than usual. The other children had already started tucking into their toast in the school hall and upon seeing this my daughter, who was diagnosed with autism last summer, froze and burst into tears.

Forty-five minutes later I was still standing outside the hall, late for work, cuddling my daughter who couldn’t stop crying. The breakfast club is a casual, drop-off-anytime, pay-as-you-go affair run by sweet dinner ladies. But for my daughter, that slight shift in her routine – in other words, not being there before breakfast is served – was enough to overwhelm her worrisome, beehive mind. Similarly, if her regular teacher is off sick and there’s a supply teacher, she’ll be out of sorts all day and cry herself to sleep later that night, overwhelmed by a change she didn’t see coming.

So for the thousands of children with autism across the UK, the events we’ve seen unfolding over the last few weeks have no doubt felt nothing short of catastrophic. And while even the most neuro-typical among us are finding lockdown tough (that’s a word I only became familiar with last year – it means your thought processes are typical), for autistic children it’s probably one of the toughest challenges they’ve ever faced. And their parents too.

Because while juggling home schooling and work is tough for all parents, for parents of autistic children, the challenges are ramping up as lockdown continues.

According to the National Autistic Society, ASD, or autistic spectrum disorder, is a lifelong disability (caveat: I’ve interviewed several experts who don’t like the word disability), which affects how people interact with and experience the world around them. There are approximately 700,000 autistic adults and children in the UK. There’s no ‘cure’, and nor should there be, according to one expert I spoke to who said that instead parents should help their child navigate the world they find so overwhelming, and that the world should try to be more understanding and accommodating in turn.

As you would expect from a spectrum disorder, the people on it are varied. It’s often called an invisible disability, because not everybody who has it shows obvious signs. Autistic girls in particular are thought to be brilliant ‘maskers’, and from a young age are able to scan a social situation (for example, a playground) and work hard to fit in, mimicking their more socially accepted peers. However, the effort involved in acting the part of a neuro-typical is exhausting and can lead to crippling anxiety. 

“Lockdown is challenging for everyone, with our daily routines being turned upside down and the pervading edge of anxiety,” says Haia Ironside, author of new book Autism and Me, which publishers today. “But for many autistic children, this is amplified significantly. Daily routine is both vital and comforting for them, so my advice to parents is to recognise and accept this whilst working together to build a new daily routine as quickly as you can.

“Parents can also help by making sure they’re taking care of themselves. If you’re able to find a sense of calm and some rest you’ll be more able to support your child. Now is not the time to feel bad that your child has lots of extra treats or screen time.

“And stay connected to support, whether that’s a virtual appointment with a teacher or psychologist. Teaching and support staff can be really important figures of trust for autistic children and finding a moment for them to say a virtual hello can maintain that emotional connection. Plus they may be able to support parents in managing their new circumstances.”

For my daughter, the biggest challenge has been getting her to accept the school’s online learning system. Autistic children, even academically bright ones like her, can often struggle to process new ways of learning. So this week we’ve shifted the focus from ticking off her school tasks to making sure she’s emotionally settled. She’s been reading, baking and writing imaginary stories, alongside her learning. I’ve also set up a weekly Zoom chat with her school counsellor and I’ve muted all the class WhatsApp groups that are full of chatter about how well home schooling is going.

As my brother, who lives aboard and has been home-schooling for two months, said to me at the weekend: “If we’ve learnt anything from the last few months it’s this: worry more about children coming through this with their mental health intact, than the curriculum.”

Wise words, whether your child has autism or not.

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