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In this new blog, Clinical Psychologist and Clinical Lead (Psychology) Dr Mei’en Lim offers families advice on how to navigate COVID-19 with their child who is on the autism spectrum.
Despite emerging relatively unscathed by COVID-19 as compared to the rest of the world, Perth is now faced with a new reality - the changing rules and restrictions, increasing case numbers, and plenty of unknowns. For families who have a child on the autism spectrum, navigating these changes and disruptions can be especially challenging.
Here’s some tips on different aspects of COVID-19 that might be helpful for children with autism.
As parents, family members, or caregivers, it can be difficult to navigate the right amount of information for our children. The short (and frustrating) answer is- ‘right’ is only right for you (your context, your world, your family system, your dynamics). This frustrates us because we (as our children do) want clear, step-by-step fixes and solutions to our problems. Instead, I would suggest some questions that might help you think through what is appropriate for your child:
Does my child have a curious mind with the capacity to understand my answers? (this is different to a child who asks ‘why?’ endlessly as part of a developmental stage)
Is my child asking questions because knowing why/how is important for them, or is it because they are feeling anxious/worried/nervous? (i.e., is uncertainty at play here?)
How do I answer their questions?
Children with autism can find it difficult to track multiple layers of explanation, so keep explanations succinct and enough for in the now.
If you don’t know…. You don’t know. It’s helpful for children to realise that we (adults) don’t have all the answers, and we are OK with not knowing.
Some useful thinking for us includes: What is the emotion behind that question? What are they really asking me? Children on the spectrum can sometimes connect things in ways that are so unusual to us because they pick up on the smallest of nuances and make connections but can’t (or don’t) articulate their reasoning.
Remember that children ask questions to help make sense of their world. Children with autism find it especially difficult to label and identify their emotions, so the next time you hear a question, remind yourself that it is your child’s way of desperately trying to organise their inner world.
Validate their feelings first, then address the question. For example, “You sound worried…. I can see how much you care about nan… Maybe nan might fall sick, I don’t really know. I get worried too when I think about it.” Tip: if you’ve given the answer and the question keeps coming back (sometimes in creative forms/variations and other times in endless repetitions that make you scream internally), then it is highly possible that their emotions are not adequately validated.
Predictability, certainty, routine.
Those are words that I hear over and over again in the therapy room as descriptors of what children on the spectrum need and crave. Yet, in the context of COVID-19, this is almost incredulous and grossly unrealistic. Parents and caregivers of a child with autism often do everything they can to control the environment to prevent dysregulation.
If we are honest enough with ourselves, part of wanting to prevent our children’s dysregulation is also because it can agitate our anxieties and worries. One of the most common questions I get in sessions is: “How do I know if s/he is just being a brat *insert hushed tone of political incorrectness here* and just insisting on their way, or it is their autism and difficulty with handling transitions?” “How much do I push?” “I worry about their inability to cope outside because the world’s going to be so hard on them” “No one will give them the allowances we do” “Our family walks on eggshells around them and it’s just not fair”.
Too often, parents are wrecked with guilt that they push their children too far and not give in, only to fluctuate to the other end of the extreme of buried frustration where their lives revolve around mitigating the black hole of change possibilities. It is frustrating when there are no clear answers. Research has been done on supporting parents with strategies to increase tolerance to uncertainty1. The shift for parents is that instead of trying to control, pre-empt, and prevent all possible variants of disturbances from occurring, we learn how to develop both ours and our children’s ability to tolerate distress2.
As if reading social cues isn’t difficult enough for children with autism, now they are expected to identify emotions and read the nuances of social interactions with our faces half covered. And for children with sensory sensitivities (“they won’t even wear shoes or a shirt, let alone a mask!!”), keeping our children safe has just become so much harder. A few things that might be helpful in your explanation about mask wearing:
Masks stops germs from entering our mouths.
Masks also stops us from spreading germs to other people.
Any additional fun reasons to wear a mask (My personal soothing mantra is- no one can see all the food stuck in my teeth….!)
Top tips for successful mask wearing:
Try fun masks with their favourite cartoons/characters/colours/prints (consider medical guidelines around cloth mask requirements).
Make sure your child hasn’t just devoured garlic bread before trying a mask on for the first time (if they will brush their teeth, maybe putting on a mask right after they have fresh crisp breath so they don’t have abhorrent odours as their initial experience).
If your child wears glasses, masks with wire nose pieces might help with fog reduction.
If their ears hurt, consider tying the mask loops to a hat/cap, or use some foam material (if they will tolerate this) around their ears.
Masks can be fun! People watch with your child and play games about who’s smiling, who’s frowning, who might be sad, who might really dislike wearing a mask (the ones with masks under their noses, or the ones who protect their chins and not mouths), look at mask patterns or be on a hunt for a particular mask colour.
COVID-19 is hard. It can be especially complex for children on the autism spectrum. But (in true clinical psychologist reframe), I’d like to audaciously suggest that it also presents before us a challenge: Will you use these opportunities to build resilience in your child by sitting with difficulty, acknowledging the unknown, and eventually (you will get there, I promise)… experience the joy of overcoming hard things together?