Shannon Des Roches Rosa
You have probably guessed that autistic people are struggling with the drastic disruptions of the coronavirus pandemic, such as school and program closures and radically altered routines. My autistic teenage son, for example, is unhappy with the sudden changes. He wants to ride the bus to school. He is skeptical of his new online learning options. He is an active guy who is mostly stuck at home. Sometimes his displeasure spirals into self-injury or aggression.
I don’t blame my son or his autism for these disruption-triggered meltdowns, but I wonder if he would have better self-regulation and coping abilities if he had not spent so much of his childhood in autism therapies that forced him to suppress his innate autistic needs under the guise of ‘intervention.’
Think about it. My son is a human being with the same passions and emotions as any other person, but with overwhelming sensory sensitivities, processing delays and a communication disability. When he was receiving early intervention, he was constantly persuaded to make eye contact that was aversive for him, bribed to suppress self-regulating stimming, and offered treats to stop behavior that was his only way to express pain or frustration because he did not have functional speech.
It’s no surprise that he, and children who have been through similar therapies, cannot always cope when the demands on them exceed their tolerance — and especially when the demands are as unexpected and extreme as those stemming from the pandemic.
How do we accommodate our autistic loved ones during a pandemic in ways that respect their needs and their style of managing stress? Here is what we are trying to do in my family, based on feedback from friends and contacts in the autistic community:
Be patient. If you need time to adjust to the limits and demands of sheltering in place, your autistic loved ones need even more time. Do not expect them to immediately take to new routines, such as online learning, or being housebound. Make their new routines as engaging — on their terms — as possible. Understand that some matters, such as wearing a mask, may never be possible for sensory reasons. And find a way, using whatever communication style works best for your child, to ask, “Are you ready?” for any activity or transition.
Provide structure, including visual or other schedules. Be predictable and reliable. Make sure you adhere to that schedule, and explain any changes before they happen, if possible.
Maintain a calm and empathetic manner so your child doesn’t inadvertently take on and amplify any difficult emotions that you may be dealing with yourself, as autistic people are wont to do. You both may need more space than usual. That’s okay.
Let your child stim (rocking, hand-flapping, using a fidget), as long as they are self-regulating and not hurting themselves. You don’t want anyone judging your stress-eating or binge-watching behaviors right now, so maybe try to understand your autistic child’s take on self-soothing.
Be mindful of your child’s social disposition. Some autistic individuals are introverts content to stay at home, or find their anxiety eases in the absence of unpredictable social dynamics, but many others are extroverts who miss their social lives keenly.
Make sure your child gets physical activity, especially if the child is energetic. Any exercise or movement is good. Physical activity is crucial to many autistic people’s ability to self-regulate.
Watch for subtle signs of sickness. Be aware that autistic people cannot always perceive or express feeling ill and, regardless, may not behave like a typical sick person. Some will implode when sick, some will keep on as though they are not sick at all, and in some cases, autistic children with fevers will be more engaged or self-regulated than usual. It may help to establish your child’s baseline temperature and monitor it daily.
These reminders have been helpful for me in supporting my son, though he is still having a rough time. It kills me to think that he may be having a harder time because of therapies that stripped him of his own instinctive ways to cope.
My hope is that when we emerge from this pandemic, researchers studying early intervention will develop approaches that teach and support autistic children by respecting their experiences rather than by squelching them. We need to better equip autistic children and their families to thrive together — in the tough times and in better ones.
Shannon Des Roches Rosa is senior editor at Thinking Person’s Guide to Autism.