July 29, 2020

Pandemic contributes to burnout in caregivers of children on autism spectrum

Study explores how vulnerable populations are disproportionately affected by the COVID-19 pandemic

Nadia El-Guebaly is a bubbly 12-year-old girl whose sense of humour is a pleasure to all who know her. She loves to sing and dance and has a penchant for tiaras. Nadia also has autism.

Individuals with autism often struggle with communication and social interaction, as well as changes to their daily routine. Fortunately, a diagnosis at a young age and early interventions helped Nadia to overcome speech difficulties and develop necessary social skills.

“Nadia lives in this hilariously fun sunshine rainbow glitter universe that is quite delightful to watch,” says her mother Jana. “What is fascinating is that she talks to everyone — people in Walmart, on the street, in the drug store, wherever — and everyone responds!”

While the El-Guebalys have much joy in their lives, Jana admits the COVID-19 pandemic has added to the challenges she faces as a parent of a child with autism — and she is not alone.

Many caregivers on verge of burnout

Research reveals that rates of stress, anxiety and depression are significantly higher in caregivers of children with an autism diagnosis. The demands placed on these parents are significant even under ideal conditions. The reduction of supports available because of the pandemic have only added to their burdens, so that many of these individuals are on the verge of burnout.

To stave off this looming health emergency, a new national study headed by Dr. Carly McMorris, PhD, assistant professor in the Werklund School of Education, is exploring how the pandemic may be disproportionately affecting children with autism and other neurodevelopmental disorders. McMorris hopes to identify the factors that cause some families to struggle and others to thrive when faced with adversity, as well as their service needs and priorities.

“Caregivers are carrying a heavy load. They are managing homeschooling for potentially multiple children, work responsibilities and household duties, all during a global crisis. Jana and other caregivers of kids with autism are also taking on the role of a service provider — in light of a significant disruption in services. This can be overwhelming in caregivers who are already stressed.”

L-R: Nadia, Jana and Jalen El-Guebaly. Mother Jana says the twin sister and brother benefit from a close and supportive relationship.

From left: Nadia, Jana and Jalen El-Guebaly. Mother Jana says the twin sister and brother benefit from a close and supportive relationship.

Photo courtesy of Jana El-Guebaly

Breakdown of routine causes turmoil for children and parents

El-Guebaly, MEd’07, says that the sudden closure of schools across Alberta followed by the end of the academic year was a mixed blessing as it gave her more time to focus on her children but also removed some of the stability the family relied on. “These last few months have been immensely stressful.  All of my positive coping strategies went out the window.”

She found the change in routine also deprived her of the personal well-being she enjoyed as a teacher with the Calgary Board of Education.

When I go to work I am the best mom when I come home because I have used my academic potential during the day. I have fulfilled that part of myself, and can then delight in the kids when I return.

McMorris, who has been researching autism and other neurodevelopmental disorders for over 10 years, says she has witnessed a recent uptick in feelings of burnout among caregivers. Since launching the study in early June, more than 1,500 respondents have completed the questionnaire, revealing that they are doing their best to remain positive and trying to keep life as normal as possible by establishing routines and staying busy, but that many feel they are in survival mode.

Personal wellness strategies

Taking simple steps can do a lot of good, says McMorris. “There are many practices caregivers can engage in to address their emotional and physical fatigue. Every family’s situation is unique to them so there is no-one-size-fits-all answer for managing wellness. Each person must find what works for them.”

Some examples of manageable actions McMorris recommends include:

  • Creating daily or weekly schedules that include time for learning and relaxation.
  • Staying informed but limiting time spent on social media to avoid becoming overwhelmed by information.
  • Taking up or continuing a hobby — reading, playing games as a family or using a meditation app like Headspace or Calm.
  • Maintaining contact with supports, friends and family through digital means during this time of physical distancing.
  • Practicing self-care. Taking a walk outside, exercising.

For El-Guebaly, purchasing a treadmill has helped, as has hiring a former student to provide an at-home one-on-one camp experience for Nadia. She also advises fellow parents to reach out for support.

Rely on your community and ask for what you need. Keep in close communication with parents who are in the same situation as there are many tips being passed around, and many shoulders to cry on.

Nadia might also suggest investing in a tiara or two.

McMorris and her team have expanded the study to include caregivers of individuals with fetal alcohol spectrum disorder, cerebral palsy, and other neurodevelopmental disorders.

McMorris’s project will provide national data to support the creation of virtual health care and mental health practices for children with neurodevelopmental disorders. Complete details about the study can be found at www.familiesfacingcovid19.com/

Dr. Carly McMorris, PhD RPsych, is an assistant professor in the Werklund School of Education at the University of Calgary. Dr. McMorris is an adjunct assistant professor in the departments of Paediatrics and Psychiatry, Cumming School of Medicine (CSM). She is a member of Mathison Centre for Mental Health Research and Education, Hotchkiss Brain Institute, Alberta Children’s Hospital Research Institute, Owerko Centre, and the O’Brien Institute for Public Health within the CSM.