Over the last few weeks, folks around the country have felt the disorienting effects of having their routine disrupted.
Suddenly people are working from home, going to school online, juggling childcare and household management with Zoom meetings and due dates. Instead of a morning commute, they are figuring out how to troubleshoot conference calls. Instead of dropping kids at school, they are scanning Khan Academy to help with 4th grade math.
The regular schedules and consistent expectations that we have had, and the usual habits and routines that accompany them, have all been turned upside down in a moment of social distancing and mandatory lockdowns. These changes may make us feel inconvenienced at best and perhaps debilitatingly anxious at worst.
What if this is how life was all the time? What if the thing that made the world make sense was your schedule? Sure, routines help all of us, even if only subconsciously. But what if you depended on the structure and schedule to help you just make it through the day – in a literal, concrete sense? And how would it feel to be unable to communicate how disruptions to that schedule made you feel?
For William, this is what life is like every day. William is the second of my 5 children, my firstborn son. He was diagnosed with autism when he was 2 years, 4 months, and 5 days old. While that was the day our world changed, the world had always been a difficult place for him. Willie is 21 now and lives in a group home for adults with disabilities. Schedules aren’t just important to him; schedules help ground him in the reality of experience, help his brain to make sense of the deluge of input at every moment.
Early on he was exceptionally sensitive to even the slightest change in schedule. If dinner was at 6:10 instead of 6:00, he would be concerned. Wait until 6:20 and he would become agitated. 6:30? You don’t want to see what that meltdown looks like.
William functions at his best when he has a clearly defined schedule and clear expectations for what his day will bring. Many people with autism do. They are trying to understand and function in the world with a brain that works differently, a brain that is overwhelmed with input. A useful metaphor for this experience is like being at a rock concert every moment of the day. Schedules help folks like Willie to make sense of the world and bring some order to the chaos.
And how many folks like Willie are there? The Centers for Disease Control and Prevention estimates that about 1 in 59 children in the U.S. has been diagnosed with autism spectrum disorder. Given that autism is a spectrum disorder, people have varying levels of abilities across this spectrum. Not every person with autism is like Willie. Individuals with autism are still unique individuals.
As we all learn to deal with the disruption that our current world crisis brings, I ask that you take just a moment to remember those like my Willie. Those folks who have been struggling with these challenges for literally every moment of their lives. I ask that you think about how this crisis has impacted those who think differently and have different abilities. Difficult times are never equally difficult. Some of our neighbors feel the challenges more acutely. And some of them, like Willie, are nonverbal and unable to express their anxiety other than through their behavior.
The first step to making a difference is being aware. Autism Awareness Month is about understanding that not everyone sees and experiences the world in the same way. This difference is both the beauty and the challenge of autism, and people like Willie who are just trying to exist in a world that didn’t make sense even before a global pandemic. Please remember folks like Willie at this time, learn about the broad spectrum of autism, and look for ways to make a difference in your community.
The United Nations sanctioned World Autism Day for April 2. Consider visiting the websites of the Interagency Autism Coordinating Committee of the U.S. Department of Health and Human Services and other organizations like Autism Speaks, Autism Society of America, or the Autistic Self Advocacy Network. There are several other organizations.
If you are interested in children’s books for discussing autism, I personally recommend Andy and His Yellow Frisbee and Ian’s Walk. Willie’s brothers and sisters, one of whom is a student here at NCU, appreciated a couple of books geared toward siblings, including Views from Our Shoes, Everybody is Different and Autism Through a Sister’s Eyes. There are many other books you can find with a quick search of the internet.
If you are someone you know is experiencing acute struggles related to autism, please reach out for help. If you are an NCU employee, you have access to the Employee Assistance Program through your HR benefits. If you are an NCU student, reach out to your Academic and Finance Advisor.
Barbara Hall, Director of Curriculum
School of Education
This blog post was written in collaboration with my husband, Jeff Hall, a writer who blogs at https://wmjehall.com/.