Filmed April 2021 – edited into six parts; total 127 minutes
This Focus on Research presentation examines the impact of COVID-19 on the quality of life and mental health of autistic children and their families, based on a survey of over 200 families. Researchers provide an assessment of the effectiveness of government supports during the initial lockdown period.
A panel discussion, featuring parents speaking to the experiences of families, then provide their recommendations for building capacity and enhancing resilience.
To view the preliminary research results see: The Impact of COVID-19 on Mental Health, Quality of Life, and Service and Support Needs in Families of Children with ASD.
- Understand the impact of COVID-19 on the quality of life and mental health of autistic children and their families.
- Assess the effectiveness of government services and supports implemented during the lockdown period.
- Identify strategies that parents can use to build resilience during this time.
- Generate potential solutions and recommendations for government.
Grace Iarocci, PhD, Professor of Psychology, SFU
Grace Iarocci, PhD is a Professor of Psychology at Simon Fraser University, and the Director of the Autism and Developmental Disorders Lab. A registered psychologist, Dr. Iarocci works closely with government and community agencies in BC to disseminate research information on ASD and influence policy on ASD and other developmental disabilities. Grace has a particular interest in researching quality of life issues among families living with ASD. A previous presentation by Dr. Iarocci on this topic can be viewed on ACT’s website.
Vanessa Fong, PhD Candidate, SFU
Vanessa Fong is a PhD student in the Developmental Psychology program at SFU. Her research focuses on examining quality of life in culturally diverse families raising autistic children from a patient-oriented framework. Throughout her graduate studies she has become deeply committed to advancing community engaged research in the field of neurodevelopmental disabilities. She hopes that bridging the gap between the scientific and autism community through engagement and collaboration will help prioritize research that is meaningful to those who are affected. The title of her PhD thesis is: A community engaged approach to examining quality of life and service navigation in Korean families raising autistic children.
Professor Anthony Bailey, BSc, MBBS, DCH, MRCPsych, FRCPC
Professor Anthony Bailey is Institute of Mental Health Chair and Professor and Chair of Child and Adolescent Psychiatry, Department of Psychiatry, Faculty of Medicine, University of British Columbia. Dr. Bailey’s clinical work focuses on teenagers and able adults with ASD and he is recognized across Canada for his depth of understanding of how public policy effects the lives of those with neuro-developmental conditions.
Part 1: Study Background
- Why families of autistic children may be uniquely impacted
- Research before the pandemic
- Study Context
- Research Questions and Methods
Part 2: Impact on the Child and Caregiver
- What is the impact of COVID-19 on the child, caregiver and family?
- Relationship between child and caregiver anxiety
Part 3: Impact on Family
- How does family quality of life differ before and during COVID-19 lockdown?
- Beach Centre Family Quality of Life Scale
Part 4: Service and Support Needs
- What are families’ service and support needs?
- Government, educational supports
Part 5: Characteristics Linked to Improved Family Quality of Life
- What characteristics of the family are linked to improved family quality of life?
Part 6: Panel Discussion
Professor Anthony Bailey facilitates a panel of parents engaged in community advocacy, discussing their perspective on the impact of the pandemic on families of children across neurodevelopmental conditions, in particular, autism.
Lori Gauthier is an indigenous mother of four sons with autism. Two years ago, she returned with her children to their unceded ancestral territory, (Nak’azdli Whut’en), near the village of Fort St James in Northern BC. Currently she works as a Maternal Child Health Worker and Advocate, providing health and social support to young indigenous families in Fort St James and surrounding First Nations. For the past 20 years Lori has worked throughout the province with young children and their families in both rural and urban communities. Her personal and professional experience supporting marginalized families and youth with special needs has given her a unique outlook on various issues and barriers facing families in rural areas.
Carey Henry lives in Cranbrook in the Interior of BC. She has two neurodiverse boys – the eldest is on the autism spectrum. Carey grew up in South Africa and moved to Canada as a young adult. She is a champion for neurodiverse children and their families. She is aware of the supports and resources required to make an autism family thrive. She is so grateful for the resources available and is passionate about advocacy and education to make life better for her family, and other neurodiverse children and their families.
Bo Sang Lee has been Executive Director of Here and Now Community Society since 2014, It is a non-profit society helping individuals with disabilities and their families that he and other families founded in 2012 to help Korean-speaking families. Bo Sang has two children, one of whom has autism and lives in the Lower Mainland. He has served as a board member of PLAN and the Family Support Institute.
Deborah Pugh founded ACT – Autism Community Training to provide evidence-based information and training to families across the province. Her experience of having returned to Canada in 1994 with her three-year old son, later diagnosed with autism, was the catalyst for 25 years of thinking about how communities and government could effectively support families across developmental disabilities, regardless of their cultural or linguistic background or where they live in BC.
00:00 – General commentary on presentation and COVID-19 experiences
12:35 – Discussion on Ministry for Children and Family Development Autism Portal
15:33 – Accessibility of the survey
17:26 – Resilient families
18:29 – How were general relationships (neighbourhood, communities) supportive?
20:05 – How were diagnostic services in British Columbia affected by COVID-19?
25:55 – What is the top priority for the government at the moment?
36:56 – Is the government trying to do too much with too little resources and expertise?
42:56 – Are there any methods of support that were implemented during COVID-19 that will continue on?
44:59 – Has this experience been similar across the country?