COVID-19 and Mental Health (CMH) Initiative: Research

Impact of COVID-19 on the Mental Health and Well-being of Caregivers and Families of Autistic People

Key Messages

  • Caregivers and families of autistic people have experienced considerable stress as a result of the COVID-19 social distancing measures, and many endorse mental health difficulties. There are many examples of families having more demands placed on them as a result of COVID-19.
  • To date, there is limited evidence for programs and supports to address caregiver mental health needs.
  • Future planning should include considerations for the significant mental health needs of caregivers and families of autistic people, and plan to evaluate emerging interventions.

Lay Summary

Using Strategy One and Two, we initially identified 210 articles, of which 13 were included in our review. Through Strategy Three, we found 2 organizational reports and 7 newspaper articles or media reports. Of the sources that we reviewed, the majority of the peer-reviewed literature and grey literature focused on the experience of caregivers and families of autistic children during this time, including descriptions of the various demands placed on them as a result of isolation policies meant to restrict the spread of COVID-19. The literature and media provided examples of the consequences of increased demands on the wellbeing of caregivers and families as they found ways to cope with these stressors. Some of the literature provided advice in the form of “tips”, opinion pieces, or infographics to help caregivers and families manage their demands and to support their capabilities. We found limited literature that focused on programs or interventions designed to support caregiver and family mental health and wellbeing through the COVID-19 pandemic. Some media reports from the perspective of caregivers of autistic children underlined the protective effects of connection and close social relationships (via online communications or communities like Facebook groups) in fostering a sense of “togetherness” that helped families find meaning during the pandemic. Some reports highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people and alluded to the need for the rapid development and evaluation of flexible, timely, and web-based support programs.

Keywords

  • Autism
  • Caregivers
  • Families
  • Parents
  • Mental Health
  • Well-being
  • Crisis
  • Distress
  • Impact

Author(s)

  • Nominated Principal Applicant: Dr. Jonathan Weiss (York University)
  • Dr. Vivian Lee (York University)
  • Carly Aubaum (York University)
  • Paula Tablon Modica (York University)
  • Nazilla Khanlou (York University)
  • Farah Ahmad (York University)
  • Jan Willem Gorter (McMaster University)
  • Carly McMorris (University of Calgary)
  • Jonathan Lai (CASDA)
  • Cindy Harrison
  • Teresa Hedley
  • Pari Johnson
  • Connie Putterman
  • Margaret Spoelstra (Autism Ontario)

For more information, please contact: Dr. Jonathan Weiss,  jonweiss@yorku.ca

Related Syntheses

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Population

Chronic Disease and/or Mental Illness, Children, Youth and Families

Language

To ensure the rapid dissemination of this critical information, information is published in the language in which it was submitted. Please contact us for French or English translations.

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