With limited social interaction, one of the key struggles facing individuals on the spectrum is the social interaction,, and screentime is not a substitute. We spoke to social worker Juhi Kaboski, and faculty fellow in the Master of Autism Studies Program, who shared her insight both as an academic and as a parent. She said, “I’m sure the disruption and sudden changes the world had to endure as a result of the pandemic has been difficult for many people. But it has been particularly painful for people on the autism spectrum who often crave predictability and routine.” Read more in the Q&A below.
How have you seen this time of staying at home affect individuals with autism?
My 11-year-old son, JP is on the autism spectrum. This sudden disruption in his daily routine has been difficult for JP to process. He suddenly stopped going to school one day without a warning or preparation of any kind. Even worse, I have no way of telling him when he will be able to go back to school. This is an ever evolving situation with no clear deadline or predictable plan.
Food selectivity is a very common issue with autism. For example, he has a very limited palette and only eats a few things at a time. For years, he has been eating essentially five things: Culver’s chicken strips, Costco brand pizza, Minute Maid Orange Juice, peanut butter and jelly sandwich, and goldfish crackers. He does not accept substitute brands, at all. At the start of the pandemic, when we did not leave the house for a couple of weeks, I ran out of his favorite foods. My other children without autism had plenty of food to choose from in the pantry or quickly accepted substitutes to eat; JP barely ate anything for a while. Not eating has obvious physical problems, but for JP, it also meant getting very moody and irritable. He would get upset easily and be inconsolable over minor issues.
How has this pandemic affected you as a parent to a child with autism?
Before the pandemic, JP used to have a very active and productive schedule: school, tutoring, autism therapy, and piano lessons. At school, he had the benefit of a one-on-one aide, and special learning time with a special education teacher and a speech therapist. Now, I am his teacher, classroom aide, special education teacher, speech therapist, autism therapist, and playmate all in one. Of course I must perform all these roles in addition to my primary role as a mom at a time when my workload as a mom has only increased because all my five children are at home with me 24/7. Initially when the schools and autism services stopped abruptly, I felt overwhelmed and stressed. After a couple months, we all adapted to the new normal. Now I worry about one day having to transition back to school and autism services after months of this life.
Can you tell me about aspects of autism that might make social distancing more challenging for individuals on the spectrum?
There are at least two unique challenges posed by social distancing: lack of opportunity to practice social skills and disruption of vital autism intervention services. By definition, autism is characterized by deficits in social skills or a lack of motivation to socialize. Social distancing limits opportunities to socialize; people on the autism spectrum need opportunities to practice social skills. Classroom aides and therapists always work in physical proximity, never more than a few feet away from their clients. As a result many vital autism services, such as Applied Behavior Analysis, are canceled or on indefinite hold right now. Without these opportunities and services, people on the autism spectrum might not be able make progress or even regress. This is a much larger concern for children at younger ages because early intervention is so important, and regular ABA might be the difference between children becoming verbal or not, children slipping into their own world or not.
Do you have any advice for parents of children with autism during this time?
I can think of two things. First, you need to be careful with technology. During the pandemic we have become more reliant on technology than ever before. My 14 year-old son plays games online with his friends, and my 9-year old daughter uses Zoom to get together with her friends. For JP, however, playing video games becomes isolating, so we need to make sure that he does other things: gets outside for exercise, practices piano, and plays games that are multiplayer interactive games with his siblings. Second, when JP was young, there were no ABA services available in the area. I had to develop my own therapies at home. We used pictures to teach language, and did things like play therapy to engage him as much as possible. It is difficult to keep up the energy, especially now completely on your own, but we think it made a difference for JP.