Consultation Position for Autistic Self-Advocates in Canada

CASDA is supporting a Canadian research study titled, “Families Facing COVID-19”. This research group is working on developing an online survey for autistic adults to tell us about their experiences during the COVID-19 pandemic. CASDA is looking for autistic self-advocates to assist in the development and implementation of the survey, as well as the dissemination of our research findings and planning for next steps. This is a paid opportunity.

Who we are looking for someone that:

  • Is an adult (aged 18 and over) with autism spectrum disorder (either formally diagnosed or self-identified)
  • Is a permanent resident of Canada
  • Has strong communication skills
  • Is familiar with self-advocacy, neurodiversity, and the unique perspectives and needs of the autistic community

If you are interested in participating, email: camcmorr@ucalgary.ca

 

THE RESEARCH PROJECT

Study Title: Families Facing COVID-19

Study Website: https://www.familiesfacingcovid19.com/

Principle Investigator: Dr. Carly McMorris (University of Calgary)

Co-Investigators: Dr. Connor Kerns (University of British Columbia), Dr. Jonathan Weiss (York University)

Collaborators: Dr. Kelly Harding (Laurentian University), Dr. Dorothy Badry (University of Calgary), Dr. Jaqueline Pei (University of Alberta), Dr. Laura Brunton (Western University), Dr. Kaitlyn McLachlan (University of Guelph)

Study Coordinator: Stephanie Howe (University of Calgary)

STUDY DESCRIPTION

The COVID-19 pandemic is an unprecedented global crisis that has changed our daily way of life. The aim of this study is to understand the impact of COVID-19 on the lives of neurodiverse individuals and their families, who are already vulnerable to stress and mental health concerns. This study was officially launched on July 9th, 2020 and asked for caregivers of children, youth, and adults with autism to complete an online survey that asked questions about the impact of the pandemic on caregivers own mental health and stress levels, the impact of the pandemic on their family (e.g., employment, finances), their access to services, and the impact of the pandemic on their autistic child (e.g., mental health, autism symptoms). The survey has been very successful and has been completed by about 1,000 caregivers across Canada. We have also expanded the study to include caregivers of individuals with fetal alcohol spectrum disorder (FASD) and cerebral palsy (CP).

We have received feedback from autistic adults that are interested in completing the survey about themselves and their own experiences during the pandemic. We agree wholeheartedly that this research should be inclusive of autistic self-advocates and are excited to expand this study to capture the unique voices of autistic adults. We would like to ensure that we make this adaptation to our survey the right way, by including autistic adults in the development and implementation of the survey.

CURRENT POSITION

We are looking for autistic adults to help us with this research project in an ongoing consultative position. This would include:

  • Discussions with the research team about the content, wording, and layout of the survey
  • Reviewing survey questions and providing feedback about the clarity of the questions, how the questions may be interpreted, and how we can make changes to be mindful of sensory issues, differences in thinking, etc.
  • Providing recommendations about how the survey can be distributed to reach the autistic community and how we can effectively communicate the findings from our research to the larger community
  • Providing recommendations for how we can use findings from our research to inform policy and improve supports for neurodiverse individuals and their families during the pandemic and moving forward.

Time commitment: we anticipate that this position will include bi-weekly meetings (over Zoom) and ongoing email discussions for a period of 6 months. The overall time commitment is estimated to be about 5 hours per month.

Reimbursement: you will be paid $25/hour as a thank-you for your time.

If you are interested in participating, email: camcmorr@ucalgary.ca

 

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