Parenting With Autism During the Pandemic

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Do you have a child with autism?  Are you on the verge of becoming the parent you don’t want to be because you just can’t take it anymore?  Yeah, us too.  And for many of us, it’s not just because of the obvious reason (our child).  There’s something else going on that I don’t hear any of my mom-friends talking about but is probably the biggest reason you aren’t coping right now. Read on to find out what the real challenges are and what to do about them.

What We’ll Cover Today

• What we are NOT talking about
• What we’re actually dealing with
• Pandemic coping strategies for everyone in the family

All parents have struggled with coping during the pandemic, but there are extra challenges for neurodiverse families.  There’s a certain amount of talk online about how hard it is for those of us parenting a child with autism and those of us living it don’t need to be reminded.  Sensory needs are difficult to meet when we are in the same small living space 24-7.  Supports provided by schools, therapists, and activities are cancelled around the world.  Family members who may have helped out are now quarantined in a different neighborhood or town.  It’s hard to cope.

But there’s more that we aren’t talking about

Since 80% of autism is genetic, it’s unlikely you have only one person in the family who has extra needs during this time.  It’s common for autistic children to have at least one parent with autistic traits (even if they don’t meet the full criteria for diagnosis) and many people have noticed that in neurodiverse relationships (the original romantic liaison that resulted in the child with autism), there is often a highly sensitive person who is able to see the good in a neurodivergent partner. That highly sensitive person has increased needs as well.

Which means there are probably other families like ours.  Two neurodivergent kids.  Dad has autism.  Mom is highly sensitive.  Now lock us all in a small house together for several months and see what happens.  

Our son is classic a sensory seeker and support seeker who tics and stims and spins and whistles.  He also loves being around people even though he’s not quite sure how to interact with them.  He’s like a puppy when he sees someone.  PEOPLE PEOPLE PEOPLE I WANT THE PEOPLE I WANT TO BE WITH THE PEOPLE!

Our daughter is on the quiet side of sensory experiences.  She will sit quietly and rub velveteen fabric or let fine sand sift through her fingers.  She refuses to get out of bed in the morning until we stop her brother from whistling for a few minutes.  She has no interest in socializing so her main issues isn’t that she’s locked away from other humans, it’s that she’s locked in with other humans.  She has suggested that the two of us should move into an apartment together with our own bedrooms and leave the guys with the house.

Tim’s preferred coping strategy is withdrawal so he spends hours every day shut into the only bathroom.  Or sorting salvaged bits of hardware in the garage.  Or playing word games on his phone in some corner where no one will see him.  We only have 950 square feet in our house on a small urban lot so I’m continually amazed by the fact that I can’t find him.  He’s a pretty big guy and he can just disappear.

Robin is the highly sensitive one.  The one who hears every noise, is bothered by clutter, and feels the emotional weight of everyone’s angst and grief and frustration. She cooks and cleans and tries to cajol the kids through their school work. She feels her skin crawl with the continual need to be “on.”  

Yesterday Robin begged everyone to give her just 5 minutes and she had a cup of tea in the corner of the laundry room where we store cleaning supplies. 

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So here’s what you’re probably dealing with if you’re caring for an autistic child.

As the person reading this article, you are probably one of the two parents whose genetics created this child.  That means that there’s a good chance you are either highly sensitive (like Robin) or have autistic traits or diagnosed autism (like Tim).  Either way, you have needs that are difficult to meet right now, especially when you can’t get a break from your child who has extra needs.  

Whether you are still in relationship with your child’s other parent or not, that parent is adding complexity as well.  If the other parent is not involved at all, there’s a good chance you are single parenting.  Bless you, we have no idea how you’re doing it.  If your child’s other parent is your ex, then there’s a good chance your ex is either highly sensitive (like Robin) or has autistic traits or diagnosed autism (like Tim).  Either way, your ex is going to be struggling more than average right now whether they admit it or not, and they are probably more difficult than average to deal with.  

If you are together with your child’s other parent then there’s a good chance you are in our situation.  Two adults with competing needs and coping strategies who are each being forced to contribute more than they feel capable of doing.  Even if the load is uneven, everyone is probably being stretched beyond what feels possible.  

In our house, Robin is the one who carries more of the load of the kids, housework, and mental work that goes into a family.  Robin is having to do far more now than she thought she was capable of doing.  But Tim, even though he doesn’t appear to be doing as much as her, is doing a proportionate amount more than he thought he could manage.  Robin’s retreat into the supply corner of the laundry room?  That required Tim to manage our kids alone when he was already feeling done for the day.  

So how can you get through something that feels impossible when there’s no choice?

First, put on your own oxygen mask before helping the (possibly autistic) child beside you.

The way this looks in real life rather than metaphor is to be totally honest with yourself about your needs.  You don’t have to be honest with anyone else.  It took a few years before Robin was willing to admit that she is sensitive and high strung and it was many many years into our marriage before Tim was willing to consider that he might have autism, much less seek a diagnosis (you can read more about that here).  But you know what your needs are.  Time alone? Privacy in the bathroom?  Enough sleep every night?  

• Time outs are for grown ups.  If you think your kids need a time out, you probably do too.  Come up with what you need most.  A piece of dark chocolate? A cool washcloth on your face?  A funny cat video?  Every time you need to, just announce “I need to go to time out” and take a minute or two for yourself.
• Prioritize what matters to you.  Stop telling yourself that it’s not okay.  If there’s something that helps you cope and it doesn’t hurt anyone else and you can afford it and have access to it, please do what you need.  I personally have an emotional attachment to my breakfast.  The whole family knows not to mess with the ingredients for my smoothie.  If you take the last frozen banana, you were have to face a sobbing mom in the morning.  It isn’t pretty. So I have several bags of peeled bananas in the freezer and back up plans for what to do if spinach or milk or cocoa becomes unavailable.  I even have a back up breakfast plan for what my new favorite breakfast will be if my preferred breakfast is completely impossible.  I don’t do this level of prep for everything, but I have a few things that really help me get through that are worth it.
• Maintain basic self care routines. I struggle with showering when no one will see me. But it’s good to take care of myself. Make a list of what is self care for you. Wash your face, brush your teeth, take your medication. Get enough sleep.

Second, help the person next to you put on their oxygen mask

• Analyze what your child or partner is doing to cope and whether that’s the best way of getting what they need.  Our kids were both sneaking hours of Minecraft Youtube videos any time they could find a crack in our screen time lock down.  But screen time is limited for a reason–they both become crazy, irritable, and depressed if they get too much.  So we got them hooked up with Libby, the library app, and they are both spending hours reading Minecraft fan fiction instead.  It gives them the escape they crave without making them mean.  Our daughter has a bin of very fine dirt she’s sifted from the backyard that she finds calming to run through her fingers.  Our son likes fidgeting with bobby pins so we ordered a multipack of various sizes and colors. Tim likes fine-sorting hardware so we decided that now’s a good time to get his garage in order.  Robin is knitting cardigans. Do the rest of us like anyone else’s strategies.  NO!  The dirt is all over the house, the bobby pins get stuck in the vacuum, and Tim’s habit of hiding in the garage and sorting hardware is one of the major arguments of our almost 20 years of marriage.  But desperate times call for desperate measures. 
• Now is not the time to hold fast to the rules.  Kids, even autistic kids, can generally understand that rules are different right now.  You can deal with undoing it when you aren’t having to deal with everything else. We typically have a no-cats-in-bed rule.  But our daughter is sleeping with our cat Tina every night.  When we go to bed we try to take Tina to the kitchen for her second supper, but sometimes she’s tucked in under the covers and Robin extricates the cat in middle of the night when she gets up to pee.  Oh well.  At least our daughter is sleeping some of the time.
• Now is the time to keep things predictable.  That seems opposite to our last suggestion. Even though the family creates chaos wherever we go, everyone thrive with routine and order.  We don’t have a strict schedule (see below about lowering expectations) but we do have a rough routine.  Whenever we get up, we eat breakfast and take meds and practice our instruments.  Yes, the grown ups practice instruments too because it’s part of putting on our own oxygen. Then whatever happens the rest of the day, at least everyone ate something, have their meds on board, and have created music.  We’ve got a good start.

THIRD lower your expectations for yourself and your family.

We don’t know about you, but we went into this thinking that so much time at home would mean we would finally finish all the projects.

• Give yourself credit for any small success.  You fed your kid.  You started a load of laundry.  You managed a zoom meeting.  Go you!  
• Think of what will really add quality to your life.  If that’s your child finishing their math every day, fine. We realized that it was taking way too much energy to get through certain subjects in school, so we replaced them with games and videos for now and Robin is using her teaching time to start piano lessons with both kids.  They are enjoying the piano lessons a great deal (as is Robin) and that’s something valuable they will keep with them from this time.  And frankly, we’re probably learning a lot more from the Crash Course videos on Youtube than from the official school work. 
• Let go of guilt.  We can’t account for how we used most of oura time.  Everything just seems harder and our energy levels are low.  Robin, in particular, has always been very productive. Her first inclination is to feel guilty.  But that doesn’t help anyone and only hurts.  Let go of it. Be willing to just exist for awhile.
• Do one thing every day that helps you feel more alive.  Maybe that’s moving your body, helping a neighbor (from a distance, with a mask on!), or learning something new.  Maybe it’s tackling a chore you’ve been putting off, figuring out a solution to a problem, or playing a board game.  Whatever it is, make sure you get one every day.  It’s easy to fall into the doldrums and this is the way out.  

What are you doing to parent effectively during the pandemic?  What is your oxygen?  What rules are your bending?  Let us know in the comments!