• CASDA knows these are unprecedented times for the disability community and wishes to support how we can building back better as a more coordinated sector emerging out of the COVID-19 crisis. To do so, CASDA is coordinating autism-related data modules and pan-disability data collection initiatives to help select meaningful indicators, mitigate duplication, and ensure that collected information leads to action.

Disclaimer

We are curating a list of surveys for autistic people and their families as well as resources for researchers from our members in the research community. This list is not comprehensive and it has not been systematically reviewed.

If you think a survey is missing, please fill out this form to add to this page.

For more information, email us at info@casda.ca. If you would also like to share your survey at an international level, visit the Global COVID-19 Childhood Disability Data Coordination page.

Sections

Surveys to Participate In

COVID-19 Disability Survey

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Launched May 4, 2020

These surveys will be repeated over time with adjustments made based on findings from previous time-points. The ultimate goal is to use the results to formulate plans that can be used by local organizations, government, NGOs, and others to support people with disabilities during COVID-19 restrictions and through the secondary and tertiary impacts and recovery phases

How will this survey be used?

  1. To measure indices of health and well-being in people with disabilities and family members; and
  2. To identify COVID-19 related needs of people with disabilities.

About this survey:

  • This project is led by Abilities Centre and affiliated with the University of British Columbia;
  • The survey takes approximately 15-20 minutes to complete;
  • To participate, you must be a person with a disability, a parent of a child with a disability, and/or a family member of a person with a disability.

Contact: To participate, click here. For more information, please contact disabilitysurvey@abilitiescentre.org

Pandemic Canadian Autism Needs Assessment Survey (PanCANS)

NOW CLOSED

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Launched May 13, 2020 – closed May 24, 2020

This new survey, developed due to COVID-19, is for individuals and families in the autism community to share how they have been impacted by changes related to the COVID-19 pandemic.  The results of the survey will be compiled into a report and shared widely.

How will this survey be used? 

  1. To understand how the autism community in Canada is being impacted by the COVID-19 pandemic;
  2. To inform service organizations of what services and supports are most helpful for families; and
  3. To inform governments of how the autism community has been impacted and advocate for increased supports in response to the COVID-19 pandemic and future emergency situations.

About this survey:

  • This project is led by Autism Speaks Canada with research support from McMaster Autism Research Team (MacART) and McMaster University and in partnership with CASDA;
  • The survey takes approximately 10-15 minutes to complete;
  • To participate, you must be an autistic person or a caregiver/family member.

Contact: To participate, click here. For more information, please contact estherrhee@autismspeakscan.ca
Pour la version française, cliquez ici.

This survey is now closed for participation.

COVID-19 Sibling Study

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Launched May 13, 2020

Adults who have siblings with developmental disabilities want information to help them in their various roles and to better support their siblings. This information is especially important at the time of the COVID-19 pandemic.

How will this survey be used?

  1. For the Centre for Addiction and Mental Health (CAHM) to provide you with helpful resources and better support; and
  2. To understand how siblings are impacted by COVID-19 pandemic, in particular, if your role in how you support your sibling has changed.

About this survey:

  • This project is led by CAMH;
  • The survey takes approximately 15 minutes to complete and you will be asked to complete the survey again six months later;
  • To participate, you must be a sibling to an adult with a developmental disability.

Contact: To participate or for more information, please contact SiblingStudy@camh.ca.

Survey of Technology Use in Children and Youth with ASD During the COVID-19 School Closures

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Launched May 2020

This survey seeks to understand how the recent COVID-19 school closures have impacted technology use in children and youth with ASD as well as parents’ perceptions about the resulting influence on their family’s well-being.

How will this survey be used?

  1. To characterize the ways in which technology use has changed during the COVID-19 pandemic as well as the resulting impact on families; and
  2. To help address questions and concerns that parents have expressed about surges in technology use during this unprecedented time.

About this survey:

  • This project is led by the Holland Bloorview Kids Rehabilitation Hospital and the University of Toronto;
  • The survey takes approximately 10 minutes to complete;
  • To participate, you must be a caregiver of a child or youth 19 years of age or younger, with or without autism.

Contact: To participate click here. For more information, please contact rcardy@hollandbloorview.ca.

Families Facing COVID-19

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Launched June 9 2020

The COVID-19 pandemic is a stressful time for everyone, and it may be especially stressful for individuals with neurodevelopmental disorders such as autism and their families. The aim of this study is to understand the impact of COVID-19 on the lives of autistic individuals and their families. The survey will ask about disruptions and difficulties due to COVID-19, caregiver stress and well-being, and the mental health and coping of the autistic person during this time.

How will this survey be used?

  1. To identify the current needs and priorities of families during the pandemic; and
  2. To know how to better support families of autistic children who are already vulnerable to stress and mental health concerns.

About this survey:

Contact: To participate click here. For more information, please contact enhancelab@ucalgary.ca.

Global Report on Developmental Delays, Disorders and Disabilities

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Launched June 12, 2020

The COVID-19 pandemic is hard for everyone but coping with the pandemic can be even harder for people with disabilities and their families. The aim of this study is to understand caregivers’ lived experience of caring for children (of all ages) with developmental delays, disorders, and disabilities.

How will this survey be used?

  1. To identify service needs and inform policies related to the pandemic; and
  2. To inform the World Health Organization’s Global Report on Developmental Delays, Disorders, and Disabilities.

About this survey:

  • This project is affiliated with McGill University;
  • The survey takes approximately 30 minutes to complete;
  • To participate, you must be a caregiver of a child (any age) with any developmental delay, disorder or disability.

Contact: To participate click here. For more information, please contact miriam.gonzalez@mail.mcgill.ca

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