Autism Spectrum Disorder and Interrupted Routines: Center Offers Advice for Families and Caregivers

As a volunteer at an Olathe, Kan., nursing home, 19-year-old Isaac Swindler enjoyed helping people by escorting residents to the chapel, bringing them meals, and assisting with laundry. But when the nursing home was forced to limit the number of visitors to the facility in response to the spread of COVID-19, Isaac became one of the millions of Americans to lose his position – and his routine.
That sudden change to daily life can be difficult for anyone, but for someone like Isaac, who has autism spectrum disorder, it can be an extraordinary disruption, said Issac’s father, Sean Swindler. Individuals with autism often struggle with rapid, unpredictable changes to their routine, he said.
“Social distancing needs to happen to keep everybody safe, and we are absolutely in support of it,” Sean said. “However, it really is a challenge for kids with autism and their families because they're losing so many opportunities for interaction that can't be reproduced at home.”

In addition to the experience of being a parent of a child with autism, Sean is the director of community program development for the Kansas Center for Autism Research and Training, or K-CART, a research center at the Life Span Institute. The center has been fielding questions about how to adjust as children’s access to opportunities is completely upended by stay-at-home orders, the closure of businesses, and converting school classrooms to online instruction. The center has created a list of COVID-19 resources for families.

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We reached out to Associate Professor Rene Jamison, a licensed psychologist for the Center for Child Health and Development in Pediatrics at the KU Medical Center and an investigator at K-CART, for tips for parents who are navigating these changes. She and other researchers will offer a webinar for families on April 10, “Managing the Coronavirus as an Individual with ASD or Caregiver.” She also provided the following guidance, which has been edited and condensed:

How can I help my child adjust to change?
It will be important for parents and families to prioritize what’s most important to keep up with. I know a lot of our families are really worried about the long days at home together, lack of structure and missing their educational opportunities. Some families are experiencing financial stress or a need for childcare. Priorities will be different for each family. 

Adjusting to these changes will be easier if you can identify tasks to accomplish in smaller chunks of the day, taking the to do list in stride. For example, when everyone is awake, you can establish that everyone will make their bed, brush their teeth and then cook breakfast. 

Identify new opportunities and the positive changes that result from sheltering at home. Try to spend more time together and connect with children. Focus on those basic needs.

How do I help my child maintain social skills during this time?
There is no doubt that kids with autism are not spending as much time engaged in social interaction or extracurricular activities. During this time, parents can model interaction and connection with their friends and family, incorporating their kids into this as well. That way you're all engaged together. 

For some, virtual classrooms or video calling friends can be overwhelming, so just circle back to prioritizing what the child gets the most out of or enjoys. Find out how other kids or teens their age are connecting in order to get ideas and create opportunities around interests or existing friends. 

How do I help my child establish a routine?
Parents and caregivers can identify priorities based on family and child needs. If possible, engage the child in creating a schedule and consider what will work best based on schedules of other family members as well. It doesn’t have to mirror the school day; academics or learning can be mixed in with time for connection and provide space for children to choose what they want to do. For example, this might look like writing and reading time in the mornings, then cooking lunch together and a walk outside.

It doesn’t need to be overly specific or scheduled to the minute, but should give enough structure so that children can see what's coming up that day.

How do I assist my child when preferred choices and activities are not available?
It’s frustrating for kids to not be able to do what they want right now. So while they may not be able to engage in preferred activities in the community, you can build scenarios at home that give them choices. Whether it’s setting up a pretend store with stuff from around the house or letting them choose what to eat for dinner some night, addressing and validating their frustration should be at the core of these experiences. 

Keeping kids engaged by asking them what they might need, or checking in on them throughout the day with affirmations or physical touch will ease this transition. If possible, create activities for children or get out materials or toys to use within certain settings or time of day. Small groupings of tasks and activities will help things move slowly. 

Most importantly, take things slowly and care for each other during this time. Daily living skills and leisure activities can be equally important when children might not be working on academic-driven skills. Parents and caregivers can look for opportunities that allow the family to learn together and to incorporate the child’s interests.

A recording of the webinar can be found here.