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Dr. Jonathan A. Weiss, Ph.D. (York University), is a Professor in the Department of Psychology, and a Clinical Psychologist. He completed a pre-doctoral internship at Surrey Place Centre (Toronto) and a post-doctoral fellowship in the Dual Diagnosis Program at the Centre for Addiction and Mental Health, and was a fellow in the Department of Psychiatry at the University of Toronto.
We have witnessed the incredible burden and challenges brought about by the COVID-19 pandemic for children and families in Canada and throughout the world. Emerging research suggests that the mental health and overall wellbeing of families of autistic children have been disproportionally impacted by multiple waves of lockdowns across Canada. Research from the first and second wave of the pandemic included a rapid knowledge synthesis report led by Dr. Vivian Lee, Assistant Professor at Carleton University, and Dr. Jonathan Weiss, Professor and Clinical Psychologist at York University, in partnership with a team of clinicians, researchers, parents, and community advocates, outlined the unique experiences of caregivers and families of autistic children and youth.
Their report1 reviewed findings from early in the pandemic, including 37 peer-reviewed publications and grey literature reports (e.g. blog posts, news reports, and organizational reports from autistic advocacy groups, etc.) from around the world, including Europe (Turkey, Serbia, United Kingdom, and Italy), Asia (China, Singapore, and India), and North America (Canada and United States). A synthesis of the findings suggested that families endured an increase in demands that exacerbated their experiences of stress as a result of COVID-19-related social distancing measures. For example, families reported that the closure of schools and social supports, loss of services and access to professionals, as well as loss of jobs and income, had resulted in abrupt changes to familiar routines, increased demands placed on the parents to meet their autistic child’s needs on top of other family-related responsibilities, and an increase in their child’s aggressive behaviours.
At the same time, 10 of the reports highlighted examples of service providers adapting the delivery of their services to online platforms or telehealth in order to continue providing essential care to overstretched autistic families. Reports described how teachers, educational assistants, behavioural therapists, speech and language services provided at-home kits for families (e.g. gathering materials in a box and dropping them off on porches!) so that parents could continue to provide programming at home. This was, at first, supported by frequent phone conversations and discussions, but later involved virtual platforms like Zoom.
Although phone or online-based behavioural and mental health care may not replace the effectiveness of in-person care, research from Drs. Lee and Weiss suggest that it may provide an useful alternative solution to autistic families. In a study2 looking at the feasibility of delivering a virtually-delivered one-on-one and group-based mental health and social skills program for autistic youth early in the pandemic, findings suggested that this might be a good approach to use with autistic families as we continue to support families during a global pandemic and even beyond.
How do we help autistic families move forward and thrive in and past the pandemic? Emerging results from a survey conducted with Canadian families of youth with developmental disabilities, including autism, suggest that youth can continue to grow and thrive even in the pandemic. A number of contextual factors contribute to parent-reports of thriving, which include opportunities for the youth to continue connecting with their community, if the youth has access to positive caring people (e.g. mentors) in their community, and live in a community that is trustworthy and helpful and works to support their wellbeing.
Lee, V., Albaum, C., Tablon Modica, P., Ahmad, F., Gorter, J. W., Khanlou, N., McMorris, Lai J., C., Harrison, C., Hedley, T., Johnston, P., Putterman, C., Spoelstra, M. and Weiss, J. A. (2021). Impact of COVID-19 on the mental health and wellbeing of caregivers and families of autistic people: A Scoping Review. Autism Research. https://doi.org/10.1002/aur.2616
Lee, V., Roudbarani, F., Tablon Modica, P., Pouyandeh, A., and Weiss, J.A. (2021) Adaptation of Cognitive Behaviour Therapy for Autistic Children During the Pandemic: A Mixed-Methods Program Evaluation. Evidence-Based Practice in Child and Adolescent Mental Health, 1-18.
The impact of the pandemic on the mental health and wellbeing of families of children and youth on the spectrum
by Drs. Vivian Lee, PhD & Jonathan Weiss, PhD
Dr. Vivian Lee is an Assistant Professor in the Department of Psychology at Carleton University. Her research focuses on understanding emotion regulation and supporting positive mental health in children and youth with autism and other neurodevelopmental disabilities.
Dr. Lee’s lab website: https://carleton.ca/autismlab/
Let's Talk: Youth Psychology Blog