Coping with Coronavirus for Families of Children with Autism

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These are challenging times and daily life is now chock full of the main ingredients for anxiety and worry. Between frequent grim news updates from around the world and new daily living circumstances that can constantly remind us of the increased danger and threat that we all face, it is a stressful time. It is all the more so for families of children, teens and adults with autism spectrum disorders (ASD).

Our research team has spent the last 17 years studying anxiety in people with ASD. Although we don’t have all the answers by any means, we do have some suggestions to share that may make coping with the anxiety of the current crisis more manageable. I’ve broken down my thoughts on anxiety and autism during the coronavirus emergency into three parts: Understanding our anxiety about what is going on, helping parents manage their own anxiety and supporting children in coping with anxiety.

Understanding the function of anxiety and why it is common in people with ASD

Anxiety is a fundamental part of our survival/defense instincts, allowing us to ascertain conditions of possible threat and danger and feel motivation to take action to avoid the danger and survive. Although in the world of clinical psychology we often speak about “anxiety” as an unwanted psychological problem, this is a gross simplification.

Anxiety is generally an adaptive feeling that helps to keep us safe and serves as an “automatic appraisal” of situations that is much faster and more holistic than our laborious efforts to “think through” a situation. There are many things that are rational to be afraid of and to avoid; the current coronavirus is just one of many examples. Therefore, it is both normal and adaptive for anyone, including parents, to be feeling some anxiety at the moment.

It is well known that ASD is associated with difficulty with regulating emotion, and that of course means that emotions such as anxiety, fear, and frustration can be easily evoked when things get stressful, including when there are changes of almost any kind. Changes from our expectations trigger automatic wariness of “the unknown,” which is a universal and probably neurologically hardwired cue for possible danger. Because people with ASD are generally more susceptible to anxiety and other strong emotions, our current circumstances—as we confront sheltering-in-place and other measures to address the unknowns of the coronavirus epidemic—are inevitably going to give rise to emotional upheaval for family members with ASD.

My stress and anxiety seem to be escalating. What can I do?

Between the stresses of becoming a child’s primary teacher and activity planner, the possible loss of the daily structure of supporting services such as ABA, speech therapy, and childcare, and the fundamental economic unknowns and possible insecurity for many families, remaining calm and resilient is a challenge. In thinking about your own emotional reaction to the current circumstances, you might find it useful to think about the difference between rational anxiety and maladaptive anxiety.

As noted above, most of the time anxiety is based on legitimate concerns about a possible threat that we should take into consideration in planning our course of action. In contrast, the type of anxiety that sometimes requires therapeutic treatment (maladaptive anxiety) tends to be irrational. Irrational anxieties are either extremely unlikely to happen (e.g., a tornado sweeping away your house if you live where we do, in Los Angeles), or are viewed as much more damaging/severe than they actually would be (e.g., if we make an embarrassing mistake in front of others, we’d lose all our friends and be subject to permanent ridicule). They can also lead to irrational avoidant behaviors (e.g., failing to eat because of fear of coronavirus contamination).

Coping with irrational anxiety can entail various approaches, but a general strategy is to clearly enumerate the exact nature of the anxiety, including the “worst-case scenario” in the back on our minds, and then use logical thinking to challenge the specifics of the worst-case scenario and figure out a way to overcome the maladaptive avoidance we are engaged in. For example, in the current era, if we effectively practice social distancing and use caution in food handling and preparation, we can feel confident that risks have been minimized to a reasonable extent, and we can face our fears by re-engaging in needlessly avoided activities (e.g., following from the previous example, returning to eating).

However, this clinical strategy should not entail putting ourselves at needless risk in order to “face our fears.” Taking guidance from public health officials is a rational action, even if it causes us some predictable anxiety, and it shouldn’t be confused with maladaptive anxiety.

Beyond anxiety, a significant stressor that some parents may be experiencing in the midst of the current coronavirus situation—even without realizing it—is role and goal confusion. Our identities and sense of self are strongly tied to our medium-to-long-term personal goals (e.g., “I want my child to develop more language and social skills,” “I am working towards completing an important project in my job”). Many medium-to-long-term goals of this sort may feel unachievable at the moment. This can be a blow to our sense of self, reducing motivation and our sense of purpose. A helpful thing to do to address this source of our own stress as parents is to recognize which goals of ours have been stymied, consider how much these goals mean to us, and consciously choose to re-orient to currently achievable goals. These goals may be shorter-term in nature or simply adaptive to the present reality. They may be more basic in nature or require a role shift—some of us are now our children’s teachers, coaches, and playmates. People who can adaptively reprioritize goals to fit changing circumstances tend to be more resilient and better able to cope.

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For example, if I was hoping for my child to make greater linguistic and social progress this year than now seems possible (due to a temporary loss of services related to social distancing), recognizing that this is likely only a temporary setback can help. As a researcher, I have not come across any studies that convince me that losing even a year of services is necessarily going to have long-term consequences if they can be resumed once the crisis is behind us. Refocusing on more achievable short-term goals such as making daily life for my family and I manageable may be advisable. I have found with my own three children (all below 12 years old) that having a daily schedule that the kids have helped to plan, and then trying to stick to it, has been really helpful. This gives all of us some of the predictability in daily life that the upheaval related to coronavirus has in some ways taken away.

Even if you are having a slowdown in services for your child, all is not lost in terms of intervention. If you have the time and energy, pick up a book for parents of kids with ASD that shares some tips on ways you can contribute. I am a fan of the books by Robert and Lynn Koegel written for parents describing applications of pivotal response treatment (PRT) that parents can learn. Or get the parents’ guide to the Early Start Denver Model (ESDM) if you have a younger child with ASD.

All in all, my advice on this front is simple: find some new goals that logically fit the current circumstances that you can also meaningfully invest in, and start shifting into higher gears with these goals while the crisis persists.

What about my child’s anxiety?

For your children, there are some easy things to do to help reduce irrational anxiety. First off, it is generally advisable to be open and honest about the coronavirus situation, but try to keep things simple and at a developmentally appropriate level. The information you share should include methods that make the problem seem controllable by your child and family: if we focus on cleanliness, social distancing, etc., we can greatly reduce our exposure to the virus. Other bits of information should focus on reducing your child’s appraisal of the risk severity: even people who get the virus are likely to survive. But of course, like any virus, we’d prefer not to get it.

To help children cope, we can sometimes frame children’s anxieties as “icky thoughts” that can be challenged with “calm thoughts.” It is then possible for some children to play a little game that might be framed as an “icky thought challenge” in which parents express an irrational couple of beliefs about the coronavirus and the child’s challenge is to prove why it is not true. Such a conversation might look something like this:

Parent: OK, I’m going to pretend to be really afraid of coronavirus and you prove why I’m wrong. What if I said that the coronavirus will probably “blow into our window” and make us sick because somebody walked by on the sidewalk?

Child: No, as long as you’re six feet away it can’t do that.

Parent: Hmm, OK you got me on that one. But, what if I said, I think coronavirus is going to come out of the water faucet in our house and get us that way?

Child: No. Water is clean before it goes in your faucet. Workers check that it is safe.

Parent: OK, that was a good point. I’m going to give you one more just for fun. What if coronavirus climbed down the chimney and got us that way?

Child: It’s not Santa Claus, Dad. Duh.

You can also do a fun drawing project showing coronavirus getting “blasted” by soap and water, or if you like to play-fight with your kids, do the same thing saying “I’ll be coronavirus and you be soap!” Empowering your child in an active role in thinking about the problem rationally and adding a small dose of humor to the mix can heighten children’s resilience.

Of course, if your child is younger or these concepts are beyond their level of cognitive development, don’t worry. Their anxieties may be more rooted in the changes in daily routines and the fear of the unknown that present circumstances can bring. Seeing you acting calmly, having a daily routine they contribute to and being sure to inject regular pleasant activities throughout the day will be a great boon to establishing a new normal that they come to see as safe, predictable, and enjoyable.

Most of all, try to be OK with achieving less, and keeping those more modest and achievable goals in mind for everyone in the family. Pacing ourselves, ensuring our basic needs are being met, and trying to accept our own limitations at times like this can really make coping with stress and anxiety more feasible. And, as always, if these general strategies aren’t sufficient, you can always seek professional advice on handling anxiety for the people in your family.