‘Piecing together our new normal’: COVID-19 and autism
These are unusual times. The rug has literally been pulled out from under us and we’re all trying to negotiate a very different life. Whether it’s working from home or home-schooling, the Coronavirus pandemic has taken what we know and turned it on its head. I’ve read lots about navigating these scary times when it comes to your children, but very little about how to live this new life when your child is autistic.
You see, autism thrives on routine. It loves knowing what’s coming next. In fact, it positively needs it. Without it, life is a scary place.
My heart broke when we found out the schools were closing. My son, who is 9 and autistic, has a difficult relationship with school – he loves learning, he hates the social side of it – but he does adore the routine and his fabulous teacher.
While most children were cheering with delight that there would be no more school for the foreseeable future, my little neurodiverse boy cried big, huge hot tears. The tears carried on coming when I couldn’t answer any of his questions with any certainty, and when I tentatively mentioned he may not return until the start of Year 6, he lost it.
Anyone who has experienced an autistic meltdown, truly understands how overwhelming these are – for you as the parent, yes, but more so for the child who is literally and physically struggling to process what has happened to them. An hour later he calmed down enough to snuggle up and sleep on me, but this high emotional state has pretty much carried on since lockdown.
Providing comfort – where there is none…
I doubt any parent was really looking forward to the prospect of adding teacher to their list of things to do, but I definitely felt the trepidation more than most. I knew that as well as trying to keep his brain occupied, my main job would be to keep him emotionally supported.
Autistic children have super high anxiety levels and the one thing I’ve learnt is they also pick up on any negative emotions you may have. So, here I am currently attempting to squash my own anxiety around issues – my parents are elderly and live at the other end of the country and my husband is a keyworker, so out and about risking his health every day – while ensuring I can emotionally lift up my scared little boy.
The hardest part of all this is having no answers. My son likes a black and white situation. There is no grey in his world and yet we’re living through possibly the greyest, most confusing times of our lives. Heck, the government is winging it, so what chance do us mere citizens have?
I’m constantly having to answer his many, many questions with ‘I don’t know’ or ‘Maybe’, which are not satisfying answers for a curious, super anxious child. In fact, I’m sure this is something all parents are dealing with at the moment – just how do you answer something you don’t know the answer to? It’s not like I can even ask Alexa or consult Google – as I normally do when quizzed about a remote planet or rare Pokémon…
The complexities of autism
Then there are the things that parents of neurotypical children may not have to consider during this lockdown. My son, like many autistic kids, will only eat certain foods – one of those is pasta, which is proving difficult to buy at my local supermarket. Trying to explain why he can’t have this favourite food, in this time when he so desperately needs his small comforts, is so very difficult.
My son also struggles with sleeping. He has melatonin to help him (and I’m just praying we can continue to get this prescription) but he wakes frequently and then rises very early (I’m talking 5am onwards). This sleep pattern has only got worse as his anxiety has kicked in, so now, we’re adding tired and grumpy – and I’m including myself in this – to the list of things we have to deal with.
There’s also the washing of hands. Autistic children often focus on things. Normally for my son this would be Pokémon, Fortnite or our dog Shyla – these are my son’s key ‘obsessions’ but washing his hands is now up there with them. Obviously, it’s great that he is so enthusiastic, but I’ve got to keep the balance between getting him to wash his hands regularly and it becoming an out-of-control obsession. We had one awful meltdown one day when I told him he didn’t need to wash his hands just yet (he’d only washed them 10 minutes previously).
What I am doing is keeping to a routine, albeit a paired down, relaxed one. We walk the dog first thing in the morning, followed by some Maths and English – with lots of breaks thrown in (while I Google improper fractions!). Then we play a word game like Boggle or Scrabble and that’s it. Afternoons are for play – and for mum to work – but sometimes I throw a life lesson in like how to sort laundry. I may as well improve his life skills while he’s home with me!
What doesn’t help is the many ‘smug mums’ out there shouting out on social media to ditch schedules and make memories by building dens and baking cakes. I’m literally hanging on by a thread – as is my son – and while I’d love to ditch the routine, he needs his more than ever.
I’d love to think that one day in the future he will look back and remember this time fondly, but I fear he’ll just remember it as just a vast time of worry. In fact, the day he wakes up and doesn’t cry and wish for ‘this nasty virus to go and everything to go back to normal’ will be a small triumph.
A few things to help autistic children (which might also help everyone!)
1 Concentrate on the positives
I don’t let my son watch the news, but he’s still very anxious about everything, so now I’m trying to show him the positive things that can come out of awful situations.
Before lockdown, we flyered our neighbourhood with leaflets offering help if people were self-isolating. I wanted him to see that communities can come together in times like this. Same with ‘Clap for the NHS’, which we both took part in. This week, we’re painting stones that we’ve collected on our daily walk with bright colours and statements like Be Kind, which we’ll leave on our walks for other people to come across. None of these things will stop the virus, but it can show him that kindness does prevail.
2 A timer is your friend
My son needs to know when things are ending and when things are starting so our Alexa is a well-used – and loved! – member of our family. She tells him when it’s time to get dressed or when it’s time to start on some maths. Without it, he falls apart, but it’s also really useful for me as I know how much down-time I have between ‘lessons’ to crack on with some work or chores.
3 Give them controlled choices
This whole pandemic has meant losing control over our lives, so one thing you can do for your child is give them some control back by offering choices. By choices I mean, ‘Do you want read now or in an hour?’ not ‘What do you want to do now?’ Give them limited choices – I only offer two – so that way they feel more in control of their own environment. It also means they’re more likely to do what you need them to do.
4 Don’t focus on teaching them
This isn’t home schooling. This is a very unusual situation. If, like my son, your kids like to learn, then obviously encourage it, but if they absolutely cannot do it because they’re not in their usual environment or because you’re not their teacher, don’t push it.
Kids, especially primary-aged kids, learn in many ways that don’t involve the classroom. Use everyday activities to help them learn – my son can now cook pasta, sort laundry and mow the lawn! Watch interesting documentaries together. Play Scrabble. There are lots of ways to keep their brains engaged.
Today’s ‘lesson’ for example is how to make a movie, which involves setting up superhero figures (something he loves doing), playing with them, filming that and then editing it. Not something that will help him pass his 11+ but movies and superheroes are his passion, so who knows what this might spark?!
5 Get them involved in planning their day
My son loves a list! Whether he’s writing down a list of his favourite superheroes in order (Flash is number one if you’re interested) or a list of much-wanted birthday presents, he takes delight in having things ordered. This week, he’s written a list of all the books he’d like to read and the films he’d like to watch while in lockdown.
One friend gets her autistic son to write a list of things he wants to do in the morning, which also ticks off handwriting practice right there! She then writes her list of things to do and they merge them together. Not only does this encourage your child to have a vested interest in what they’re doing that day, but it also shows them that you’re also busy with tasks.
6 Be realistic
Don’t set up a big structured timetable of a day. You need to realise that even though children are at school for six hours a day, they’re probably only learning for half of that.
I’d also say be chilled about screen time. Yes, I don’t normally let him play video games or watch movies all day, but these are unusual times. He normally gets no more than an hour of Fortnite a day but now it’s actually his only source of friend time – it’s the one chance he gets to chat to everyone from school, so I’ve chilled out about him being on it.
I’m also letting him get bored. I was always bored as a kid, but not for long, as I soon found something to occupy myself with. My son is also learning the same and – shock horror – yesterday opted to draw instead of watch You Tube. You see, good things can come out of these horrible times…