Date Published: April 14, 2020
We live in anxious times, watching a pandemic unfold on our screens and in our local communities. Many schools, workplaces, and adult disability programs have closed or reduced their services to prevent the spread of COVID-19. Do the fears and changes in routine brought on by COVID-19 have a greater effect on people who are on the spectrum? They already are more likely to have anxiety and to prefer that their routines stay the same, compared with other people.
The answer, like autism itself, is complicated. Roma A. Vasa, M.D., a child and adolescent psychiatrist at Kennedy Krieger Institute in Maryland, says she has seen reactions as varied as the spectrum itself.
“Some of the children are doing OK, and others are struggling. There are a variety of different responses and reactions to this,” says Vasa, an expert on autism and anxiety.
Similarly, some adults on the spectrum, who were interviewed for this article, say that they and others in the autism community have had varied reactions to the pandemic. Some people are adjusting well to social distancing, while others are very anxious about disruptions to their jobs, disability services, and health care.
Anxiety is one of the most common psychiatric disorders affecting people who have autism. About 40 percent of youth – and up to half of adults – meet the clinical criteria of an anxiety disorder, such as social anxiety, phobia, panic disorder, or generalized anxiety.1-7 By comparison, in the general U.S. population, 7 percent of children and 19 percent of adults have an anxiety disorder, according to federal health statistics.
Some people with autism may feel uncomfortable or anxious when their routines change. An “insistence on sameness,” a strong need for routines to be unchanged, is one of the symptoms of autism.
Vasa cautions against assuming that changes in routines are the only triggers for the anxiety that some children, teens, and young adults are experiencing now. Some youth are anxious about COVID-19 itself, while others worry about their futures. Will they be able to enjoy the same activities or have friends when they can venture outside their homes again? “There are a lot of ‘what ifs’,” Vasa says. “What if we can never do this [activity] again? What if I never see my friends again? What if I don’t have that one friend I made anymore?”
Managing Fears when School Closes
Cara Stepanian, a SPARK parent, understands those fears well. Her family lives in New York State, which was hit hard in March by the pandemic. The closing of schools triggered anxiety in Jackson, her third-grade son with autism.
Jackson entered a general education classroom in the fall, after several years in a small, special education class. After a few months of eating alone in the lunchroom and sitting with an aide on the bus, Jackson began to flourish socially. He chose to sit with other students and began to make friends. Most importantly, Jackson told his mother he loves his school “100 out of 10.”
When school shut down, at first for a few days, and then for longer, he struggled to understand why the date for re-opening kept changing. He feared he was the only one missing school. His special education services – speech and occupational therapies, and psychological services – came to a grinding halt. So did those budding friendships. His anxiety made it harder to calm himself. “Having that all disrupted has been a big struggle for all of us,” Stepanian says.
A SPARK survey of more than 8,000 parents and guardians found that 84 percent reported disruptions in school services in March. Like many parents of younger children on the spectrum, Stepanian wondered if her son would lose, at least temporarily, some of his newly developed skills.
To manage, the Stepanians began re-creating aspects of Jackson’s school day at home. Stepanian used a white board to create a daily schedule for Jackson and his two younger siblings. She encourages Jackson to exercise and jump on a mini-trampoline. His class had a morning meeting to review the day’s schedule, so the family began starting their days with a meeting. The meeting schedule one recent Friday included discussing “2 things you are grateful for” and “What are you looking forward to today?”
Strategies for Managing Anxiety in a Pandemic
As it so happens, Stepanian is using some of the same strategies that Vasa recommends.
Vasa says families can create routines for their children and help them focus on positive thoughts while staying home. Routines should be flexible, she says. “Parents can’t simulate everything the kids have at school in the home, but they can find a routine that works, and that doesn’t over-stress the parents. Many parents are working and caring for children at the same time.”
Youth who have therapists can continue to see them for video or telephone visits, if possible, she says. When a child’s worries crowd out positive thoughts, Vasa says, parents can help them have “more balanced thinking” by shifting the conversation. “Say to them, ‘Let’s think about some of the good things that are happening right now.'” Every day, she says, parents can help their children “take a positive inventory of what’s going well, and what are the good things around them.”
Don’t be afraid to talk to your children about COVID-19 calmly, and at their level, she says. “Kids are going to be seeing people wearing face masks now, and this is an opportunity to share the facts and help them work through their feelings.”
“When talking to children, you don’t want to share too much information and overload them. It’s really important to make sure the child has the opportunity to ask questions,” she says. “Ask them, ‘What have you heard? What do you know?'” At the same time, she says, “we want them to know they’re safe.”
Parents should wait until they feel calm themselves to have these conversations. “Children pick up on their parents’ anxiety,” she explains.
Keeping Calm When Discussing COVID-19
Susan G. Gilroy, of Massachusetts, knew she needed to put her own concerns aside when discussing COVID-19 with her daughter, Lindsay. Susan Gilroy is the legal guardian of Lindsay, 41, who has autism and an anxiety disorder. At 74, Susan Gilroy knows that her age group has a higher risk for complications from the virus. “I’m at a stage in life that I know if I got sick, it could be devastating. But I’ve just tried to maintain calm because there are so many things beyond our control, and getting anxious about it will not change anything,” Susan Gilroy says.
She talked to her daughter about hand-washing and maintaining a safe distance from other people, to reduce the chance of infection. “She understands the word quarantine better than social distancing,” Susan Gilroy explains.
Lindsay Gilroy saw her world change dramatically in a matter of weeks. The day program she attended for 30 hours per week, as well as her part-time job, closed. She misses seeing the staff who would take her to window shop, people she considered to be friends, her mother says. She has adjusted well to those changes, even though she used to find disruptions to her routine to be very challenging.
“She’s been doing great, because for the last few years, things have been so consistent for her and her [anti-anxiety] medications are working just right,” her mother says. The two have adopted new routines, such as taking walks, working on jigsaw puzzles, watching movies, listening to music, and baking cookies. Her mother orders DVDs and puzzles online now. “Amazon is my best friend now,” she says.
A Reprieve from Social Stress, for Some on the Spectrum
A portion of the adult autistic community is adapting well to working from home and avoiding social events, says James Williams.
Williams, who has autism, is a member of the SPARK Community Advisory Council (CAC), an autism consultant, and a speaker based in Illinois. “Some autistic adults say this is paradise,” he says. Introverts may prefer to keep their social distance, while others may be wary of socializing because of past experiences with bullying and rejection, he explains.
Although a self-described extrovert, Williams understands the mixed feelings some on the spectrum have about social situations. “I have a lot of anxiety,” he says, “but it is a byproduct of autism and being put in those situations that autistic people are put in on an almost daily basis.”
He worries about the effect of stay-at-home orders on other autistic adults during the pandemic. What will happen to people who lose jobs and services, who do not feel safe at home, or who can’t see their health care providers? he asks.
“Nothing is the Same”
Juli Liske, a SPARK CAC member who has autism, also worries about the “invisible population” of children and adults who are losing services. “This has been like a major earthquake for them. Nothing is the same,” says Liske, who works for an autism organization in Tennessee.
She has heard from parents who are concerned about losing therapies for their young children during a critical time in their child’s development. She encourages them to ask their child’s therapists to coach them, over a video call, on how to provide some of those therapies at home.
Even if youngsters temporarily lose some services, parents should not lose hope, says Susan Gilroy, a former co-director of an autism support center. “I think parents underestimate how much their interactions with their children, and the things they do at home, also make an impact. All is not lost during these times, and kids are still going to make progress.”
- COVID-19 and its Impact on the SPARK ASD Community
- Suggested COVID-19-Related Resources for the Autism Community
- White S.W. et al. Clin. Psychol. Rev. 29, 216-229 (2009) PubMed
- Brookman-Frazee L. et al. Autism 22, 938-952 (2018) PubMed
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders 5th ed. (2013)
- Buck T.R. et al. J. Autism Dev. Disord. 44, 3063-3071 (2014) PubMed
- Lugnegard T. et al.Res. Dev. Disabil. 32, 1910-1917 (2011) PubMed
- Croen L.A. et al. Autism 19, 814-823 (2015) PubMed
- Hardan A. SPARK webinar on anxiety and autism (2017)
Photo provided by Cara Stepanian