It’s autism awareness week. “Eh? Is it?” We hear you say? Yes, well actually it is - you all might not know what day it is right now (blame isolation fog), but we more than most know this week well, because for us every week is autism awareness week as we navigate life with our son Woody - diagnosed with high functioning autism at around three years old.
It’s also surviving-coronavirus-lockdown week (/month/year) too of course, so this piece, which started out as a chance to offer a glimpse into the family life of parenting a child with autism, has taken a slightly different turn.
Now, like everyone else we’re trapped inside our homes juggling work and children, trying to homeschool and stay healthy without divorce and or alcoholism becoming the inevitable fallout. But perhaps actually it’s the perfect time to paint a picture of what it’s like to mix autism, work and family, now that we’re living in the most condensed version of that reality.
Day one of homeschooling proved the most stark reminder of the challenges ahead. As every other child in the country seemed to be doing jumping jacks with Joe Wicks’ live Online PE Lessons, our son was lying on the floor screaming, begging us to turn him off. The input from the laptop and us barking at him to join in was too much overload and just too big a demand on him. He sobbed. We sobbed. Then we vowed to not follow all the other ‘helpful’ homeschooling links doing the rounds on social media and class WhatsApps. Our son has trained professionals helping him to follow activities everyday in school - a one on one assistant that sits with him in class and gently gets him to follow the curriculum. Why would two ad creatives suddenly have the skills to make that magic happen?
Routine is really important for kids with autism. So a closed school and a completely different life isn’t the best scenario for Woody. We often let him run up and down the street to ‘stim’ – his way of regulating his feelings. But that’s now only allowed once a day thanks to lockdown. We have a trampoline in the living room that he conducts most of his day from to keep that sensory input going, but it’s quite tricky to have a conference call when the house is rattling with every bounce.
Luckily for us, Woody isn’t as fussy with food as some autistic kids, and with all the stockpiling going on we know some parents are really struggling to find the four or five items their child will actually eat. If we run out of Nutella wraps though, you’ll soon hear about it.
Then there’s the isolation. Whilst lots of his school mates are desperately trying to meet up over Houseparty app, he only seems to be missing his cousin, Frank. Which, we guess is a blessing. He hasn’t mentioned anyone else from school since all this has gone down.
People with autism are already living in a kind of isolation. They can be quite solitary, preferring to play alone or do their own thing away from the crowd. We’ve always struggled to get Woody to do ‘fun family activities’ like games or baking or crafting with us. So it will be a long few weeks without those things to fall back on.
But the isolation is something he’s used to. Many people on the spectrum have special interests that they immerse themselves in alone. His used to be airplanes and more recently it’s become Star Wars. He can go off and watch the same You Tube video of a Star Wars convention hundreds of times over and not get bored. He’s on his third viewing of The Empire Strikes Back this week (it’s only Monday) and he will happily have an imaginary lightsaber fight with himself until the small hours if you don’t stop him. (Or go insane first from the noise)
So it’s been pretty difficult to follow any kind of timetable. We’re having to trick him in to doing anything vaguely like school work. (“Ooo, look at this funny game on the computer, imagine if those number blocks were LIGHTSABERS, how many are there left???” we chirp in the high-pitched voice of desperation.) And somehow the days seem to have about a million hours in them (lockdown is slooooooow, right?) so filling those hours when there are only really two or three things he enjoys (jumping, ipad, Star Wars) are pretty tough.
But there’s been one upside to all this enforced family time. Woody has always needed to have us close by. He gets anxious if we go out and would happily stay glued to our side forever. In fact he’s already told us he’ll be sleeping in our bed with us until he’s “at least twenty five.” So although we’re getting zero sleep as usual we know that inside he’s happy that the “stupid virus” has brought both his busy working parents home to roost.
They say autistic people lack empathy but in our experience Woody feels things on a much deeper level than most. He might not be giving a hoot what his school friends are up to, but he’s feeling every bit of our anxiety and worry right now. He regularly flings his arms around us and sighs, whispering in to our chests how much he loves us. Deep down we know he’s comforting us just as much as we’re comforting him. It’s tough to keep batting him away to conduct a conference call or nip away for any length of time to work without him interrupting and demanding our full attention. As many parents are finding, it’s tough. But it seems to sting a bit more when you know your causing your child extra anxiety by pushing them away.
Since all this began Woody’s worn a hoodie up over his head, probably his way of coping with everything that’s going on. It must feel nice to block out a bit of the world right now and retreat in to somewhere more cosy. Or he could just be channelling his inner jedi to get him through, who knows.
So this autism awareness week, maybe check in on any families that might have additional struggles added in to their lockdowns. Send them a funny (Star Wars) meme or two. If you can make them curriculum based too, well, then you deserve a yellow pencil for Good.
Sonny and Charlotte Adorjan are Creative Directors and founders of Woodism, an art collaboration bringing to life the words of their autistic son, Woody. Profits go to Ambitious About Autism