What’s it like to be autistic during the coronavirus pandemic? A mother tells us


Our son has autism. Ever since his diagnosis, over the years, we have built a network of key individuals in his life that help him learn and be integrated into our community. He has no less than 15 different individuals who are committed to his well-being and work with him on a daily basis, including teachers, tutors, a speech therapist, an occupational therapist and riding instructors. He thrives on routine and knows exactly when it is time for his swim or riding lesson, even without looking at the calendar or clock. For swim, every Tuesday at 3 pm. For riding, every Wednesday and Friday at 3 pm. Exactly on the hour, not a minute before and not a minute later.

On Jan. 30, the World Health Organization (WHO) declared a global health emergency, and by March, declared COVID-19 as a pandemic. Soon after, the United States declared a national emergency, and a rapid sequence of events leads us to today. Schools, libraries, museums, zoos, theaters are closed in hopes to slow the transmission of the SARS-CoV-2, the virus that causes COVID-19.

In such an unchartered time that is hard for any child, it is even harder for a non-neurotypical child and their family unit. Often, they have additional challenges related to communication, comprehension, an insistence on sameness and routine, and sensory sensitivities — all of which may be heightened during any stressful period, especially one that is sustained.

Very much like our son, many children with special needs have a team that supports them and their families. In addition to their special education teacher who uses an individualized plan for the student, children often have additional sessions with their speech or occupational therapist and may have an aid who helps with schoolwork and transitions. School closure may mean that remote learning is necessary, and while this will require the acquisition of new skills for any learner to be successful, it will certainly pose an additional challenge for non-neurotypical children who may have difficulty processing visual or auditory input from the computer or attending to a task in an unfamiliar setting.

Suddenly, the parent is no longer just the dad or mom, but also the teacher, therapist and aid all in one. What had previously taken an entire team, now has to somehow stay afloat, and caregivers will find themselves in uncharted territory as they try to navigate this new reality.

Social distancing also means that many places that our children find respite in — those places that keep them connected to our society — are closed. No visits to the zoo. No riding at the barn. No swims lessons at the public pool.

For some, explanations of the current situation may work, and for others, not. Ask any parent whose child with autism loves visiting the zoo or a particular store — there’s an insurmountable task of trying to explain to the child that the zoo is closed, not just today or tomorrow, but potentially for the next several weeks.

The COVID-19 pandemic has, over a very short period of time, created a situation that is both inexplicable and unexpected, which many non-neurotypical children inherently have difficulty dealing with. Limitation in communication, both verbal and nonverbal, compounds the frustration and anxiety that may be expressed through difficult behavior such as self-aggression or even withdrawal.

As a critical care physician and a mother of two young boys, one of whom has autism, I have always been acutely aware of the need to be in the moment. To accept the moment for what it is, to embrace it, and to deal with it, knowing that the moment will end. If we are able to embrace this mindset, then perhaps this situation will be less overwhelming.

We also need to be ready to forgive ourselves and let go of self-judgments. There will be days when the ‘homeschooling’ is not done, and instead, it is just a day of being together. It is also important to stay connected with others; social distancing does not equal social isolation. Regular check-ins and interaction with others via online avenues are ways to maintain social interaction.

The COVID-19 pandemic is a rapidly fluid situation, and suffice to say, no one knows exactly how long this crisis will last. We will be tested, and some days are going to be harder than others. Be in the moment, find joy in the little things, and always be grounded in hope and love.

Michele Kong, MD is a critical care physician and a mother of two boys. She is also the co-founder of KultureCity, which works to make environments inclusive for people with autism.