LIFE IN LOCKDOWN WITH OUR AUTISTIC SON

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I heard a great quote the other day (can’t remember where, unfortunately) which said that although we are all physically divided at the moment, the shared experience of trying to navigate a pandemic means we have more in common than ever before. That said,  there a those whose current circumstance present a significantly greater challenge. To (belatedly) mark Autism Awareness Week Charlotte shares her experience of ‘Life in Lockdown with her Autistic Son’.

  • It’s autism awareness week. “Eh? Is it?” We hear you say? Yes, well actually it is –  None of us might know what day it is right now (blame that isolation fog), but my husband and I 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 3 years old.

  • It’s also Surviving-Corona-Virus-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 home school 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 starkest 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 every day in school – a one on one assistant that sits with him in class and gently gets him to follow the curriculum. Why would two advertising 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 months 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 into doing anything vaguely like schoolwork. (“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.

  • He’s also loving not going to school. He’s at an amazing school with brilliant, kind and understanding teachers. But he absolutely hates it. He has to spend the day holding it together, with all that overload to his senses and demands and the uncontrollable nature of other children and having to sit up and sit still and stop talking and stay calm and not stim and stop shouting and be away from his parents who he “loves all the way to the end of counting.” Ooooofff…. He always comes home overwrought and often in bits.

  • He’s stopped saying he wants to blow the school up though, which has been nice.

  • 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. The struggle (and the snuggle) is real.

  • 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 you’re causing your child extra anxiety by pushing them away. 

  • And then we have to add in a two-year-old to the mix too – Woody’s little sister, Essie who is screeching and bouncing her way around the house like a whirling dervish on acid – in that way toddlers do.

  • Woody loves her to bits, but he’s got a compulsion to squeeze her and push his face up against hers. Lots of kids with autism have sensory processing issues and compulsions that are like itches that just have to be scratched. So if he sees his sister, especially if she’s making lots of noise (ie often) he has to squish her.

  • Her subsequent squeals only fuel the sensation for him and make him do it more. With them both cooped up together all day there’s a lot more of that going on. A lot more. We’ve resorted to trying to keep them separate for periods of the day just to give us (and more importantly, her) some respite.

  • Our daily exercise is often done with us ‘dividing and conquering’ with one parent running up and down the road with Woody, and the other parent going out later to chase the toddler around the block.

  • 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 into somewhere more cosy. Or he could just be channelling his inner Jedi to get him through, who knows.

  • It’s been interesting to watch him create coping mechanisms though. Many people with autism are living in a constant state of bubbling anxiety and worry anyway. This whole lockdown and forced restriction and isolation are very similar to how they feel about the world as it is. I guess it’s a good way of showing neurotypical people what it’s like for people like Woody every day, as we all struggle to cope with our ‘new normal’.

  • To get himself through, he’s also taken to wearing a pair of toy doctor’s glasses from an old playset, only taking them off for bed. He said they made him feel good. The hood and the glasses have become like his armour against the World I think. His protection. A bit like our facemasks. 

  • So this autism awareness week, maybe check in on any families that might have additional struggles added into their lockdowns. And keep checking on them. Send them a funny (Star Wars) meme or two. If you can make them curriculum-based too, well, then you absolutely deserve a gold star. 

**Charlotte Adorjan is a Creative Director, writer and co-founder of Woodism, an art collective bringing to life the words of her autistic son, Woody. Profits go to Ambitious About Autism  @woodism_ink Woodism.co.uk **

 

 

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5 Comments

  • Reply Mandy mileham April 11, 2020 at 7:45 am

    Oh thank you I feel this so much I have two boys with ASD and a teenager probably with ASD but undiagnosed and managing the very different needs is a challenge it really helps to read other parent’s experiences thank you x

  • Reply Helen April 11, 2020 at 8:34 am

    What a moving, loving, humorous and well-written piece. Thank you for the insight to your lives. x

  • Reply Samantha Curtis April 11, 2020 at 9:16 am

    Thank you so much 😊🤗😘xx

  • Reply Jennie C April 11, 2020 at 2:12 pm

    I’m with you here and understand completely. My son is also autistic (PDA) it’s a very challenging journey for us. We have found going out helps. I hope it helps to know that the government guidelines say you can take an autistic child out more that the once a day and travel beyond you local area if you need to do so. Please see item 15: https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do

    Hope that helps if you need it.
    Sending much love and all the best.

  • Reply B April 12, 2020 at 7:27 am

    This is beautiful. Thank you. Hello to Woody too. My daughter has a diagnosis of Asperger and PDA and although the first few weeks of no school had her leaping off the sofa and jumping (more often than usual) for joy, the anxiety and lack of regular routine has set in. Home working, home schooling, chef, cleaner, caretaker and nurse is taking its toll on me but then I imagine how she must be feeling and I know that it if I can stay regulated as much as I can, we will get through this. Sending love and light x 💙

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