What does it mean to be "Celebrating Autism Awareness" in the time of COVID-19
For World Autism Awareness Day, I had written a post about recognizing, accepting, celebrating and empowering differences and neurodiversity. But this year’s observance takes place in the midst of a public health crisis that places persons with autism at disproportionate risk. The usual post just didn’t feel right.
The world is out of order and scary right now, for adults and for kids, and for individuals on the spectrum and many other neurodiverse individuals, those changes due to coronavirus and its effects on society can be particularly difficult to navigate.
All your routines are gone. The schools and places that you and your child visit regularly are largely closed. Governments have promoted containment measures such as sheltering in place and social distancing, staying away from other people to avoid spreading infection. In a time of uncertainty, people with autism and their families are facing sudden disruptions in daily services and resources. This is forcing many autistic individuals over the “services cliff,” as supports they normally receive within a school system, day program or other setting are no longer available.
Teletherapy services like those offered by Compass Speech and College Prep can help families and individuals continue to access necessary care, but not all care providers are equipped to provide quality telehealth services. Not to mention, telehealth is impossible and insufficient for those who rely on the support of others to eat, dress and bathe. To learn about government efforts to continue to provide these vital services, see this article in Spectrum News.
This situation feels impossible. And parents, we hear you and are here for you.
You’ve probably noticed that certain behaviors, such as perseveration on specific topics, may have increased. These behaviors are often linked to feeling anxious and confused. Talking to your kids about the coronavirus like any other important conversation: by asking questions. What do you know about COVID-19? What did you learn about the coronavirus in school? What are your friends saying? Have you seen articles or YouTube videos about the coronavirus? What do you remember reading or seeing?
Open-ended questions and probing follow-up questions help to reveal how kids are processing information. This helps you build the mental framework you need to offer responses in an age-appropriate way. Acknowledging feelings during these conversations is critically important. It’s OK to feel sad. It’s OK to be scared. The reality of life is that not every day is going to be an easy, happy day. But, let them know that when big feelings happen, sharing your experience with someone who loves you is one way to feel better.
Need help talking to your kids about COVID-19 and precautions?
Create a Routine
Many individuals on the spectrum benefit from routine, structure and what one of my clients call “sameness.” Unfortunately, most things are being thrown out the window at the moment, including the things that may give your child the most security and joy. It’s important to ask what we can make constant in the children’s life and to keep it that way. Create a schedule. Even if you can’t map out the whole day, make small routines for even parts of the day, a morning, an evening or one hour. Create anchor points that make them more manageable. See simple, realistic ideas for making a schedule here.
We can create routines as much as we can, but ultimately there are going to be things we can’t control for. Reducing the unknowns can be helpful, but we also can practice and desensitize uncertainty in ways that will set our children up for the rest of their lives. Create a social story to explain parts of a day that may be unstructured. Play games of chance or improvisation to practice outcomes that aren’t predictable. Anxiety management can be slowly learned through exposure, thereby reducing that stress response when the unexpected happens. The key thing is making the unexpected as explicit as possible by explaining it to them ahead of time. This could look like a conversation with your child where you say, “I hope we go back to school in four weeks, but nobody knows for you.”
Support coping strategies and acknowledge uncertainty
During a session with one of my students on the spectrum, I asked: “You know it’s going to be okay, don’t you?”
“I don’t think so,” my he said, shaking his head. “It’s going to be confusing.”
He was right. It is a confusing time. But you’re not alone. The following 7 support strategies from UNC’s Child Development Institute Autism Team are designed to meet the unique needs of individuals with autism during this period of uncertainty. In addition, examples and ready-made resources are included to help caregivers implement these strategies quickly and easily. I’ve found it very useful for working with clients and their families
We all have a role to play in ensuring that the needs of people who are disproportionately impacted by COVID-19 are met during this difficult period. Even in these unpredictable times, we must commit to ensuring that our non-traditional ways of working, learning, and engaging with each other, as well as our global response to the coronavirus, are inclusive of and accessible to all people, including persons with autism.
We here at Compass Speech want to hear from you. Tell us what you need so we can help.