By Jaime Collins, Director of Marketing and Communications
“Today is a stay-at-home day,” says Jessica. “We don’t go places on stay-at-home days.” Sounds like Jessica has a perfect coping mechanism for social distancing, right?
In the most basic of ways, yes. But the truth is far more complicated, especially for her parents. You see little seven-year-old Jessica and her five-year-old sister Jenna both live with Autism Spectrum Disorder (ASD), and her parents now live with some harsh new realities forced on them.
COVID-19 affects everyone’s daily life, yet for kids and parents of kids with ASD, the disruptions can feel especially severe. With no school to go to, no teacher, no aides, no therapists, and (worse yet) no structure to their children’s time, this is a time of upheaval that can feel especially hostile for many of these families.
In addition to the restrictions and worries most Americans are dealing with now, parents of kids with ASD are suddenly loaded up with an additional array of new challenges while the kids are loaded up with high levels of anxiety that even further disrupts families’ lives.
Many families are especially reliant on the school system. Little Jenna, for example, is mostly non-verbal and has an overall lower level of functioning than her older sister. At school, a dedicated full-time aide keeps her on track, and with several hours of speech therapy each day, Jenna makes regular progress that her parents hope may one day allow her to live independently. Her parents both work to afford the extra cost of this level of specialized education.
Kids on the autism spectrum get pigeon-holed with labels, such as “high functioning” and “low functioning,” and that makes it seem as though the spectrum is a linear one. And their humanity is often reduced to their being one or the other or somewhere in between. “Reality is the range of autism is more like color samples at the world’s largest paint store,” says Southwest Health Occupational Therapist Kaitlin Kersten, OTR/L. “Many hundreds of shades of all colors with many appearing the same – until you realize even with those that look so similar, there’s a touch of something different in the mix. Something that makes them unique.”
For Jenna, home is where she plays. School is where she does those other things. Kids with ASD thrive on routine and rigid structure, and they experience anxiety and meltdowns or display aggressive behaviors when routines get disrupted.
Many families with kids with ASD are reporting online schooling is difficult for their children (Spark Covid-19 Survey, Dr. Wendy Chung, Principal Investigator). Sixty-four percent of families report speech therapy and other services being disrupted and as few as 42 percent report their child with ASD understands COVID-19 information moderately well or better. Fact is, kids like Jenna and even more highly functional children like her sister just don’t understand why their lives have changed or why parents are now asking them to do lessons at home instead of their teachers in schools.
For many, change like this is impossible to process, and not getting the help they need means losing precious time and vital progress in their development. Parents and educators alike worry the gains they’ve made may disappear with the time off. It’s all a giant shift in everyone’s lives with no time to plan for the changes. That leaves parents feeling stressed and often overwhelmed with added duties, in addition to all the fear and anxiety COVID-19 heaps on us otherwise. Ninety-seven percent of parents report feeling those pressures, in fact, with 95 percent reporting their situations have negatively impacted their mental well-being.
So in the midst of all this upheaval in families with kids with ASD, what are parents to do? Here are some ideas:
- Keeping a schedule has proven effective for some. Setting a routine of getting up and going to bed at the same time offers a place to start, giving their kids the structure they need.
- Taking breaks in the day for programmed relaxation is helpful.
- Pick and choose your battles. Know some days (and parts of some days) will be better than others.
- There are helpful places on the web, too, such as Spark for Autism (the source of the study noted above), which offers helpful resources.
Ultimately, for some kids, going back to school may prove a challenge, too. This break is not doing any families facing these issues any favors. That makes this a time to extend some extra grace and patience with children and the other members of the family. Sometimes just accepting it’s going to take time to adjust is helpful. And that the situation will be temporary.