AIR-P and ARRB Present: Conducting Quality Participatory Autism Research
Tuesday, April 20, 2021
4:00 p.m. - 5:30 p.m. ET
Location: Zoom Webinar
Webinar Description:
In this webinar, the AIR-P Autistic Researcher Review Board (ARRB) will discuss how autism researchers can respect and include the autistic community in their work from participants to co-researchers. ARRB researchers will discuss autistic experiences with participatory research approaches that include diverse autistic people from across the autism spectrum as members of research teams. Furthermore, ARRB researchers will present concrete recommendations about how participatory research practices can be implemented. Considerations around appropriate and respectful autism terminology will be addressed.
Presenters:
Patrick Dwyer
Patrick is an autistic PhD candidate at UC Davis. His main research interest is exploring sensory processing and attention in autism, but Patrick is broadly interested in anything relevant to the well-being of autistic people. Patrick is a co-founder and co-chair of the Autistic Researchers Committee at the International Society for Autism Research (INSAR). At a local level, Patrick facilitates a peer-support community for autistic students at UC Davis. He maintains a blog, autisticscholar.com.
Jackie Ryan
Jackie is an autistic PhD candidate in Rehabilitation Science at the University of Alberta. She holds a Master's Degree in Leadership from Royal Roads University where her research on leadership to promote self-determination of individuals with Autism Spectrum Disorder won the University Founders' Award. Her doctoral research is on understanding autonomy and autonomy-support from the perspective of autistic adults with intellectual disabilities using a community-based participatory research approach. Jackie is the founder of the Quest for Independence program, an innovative post-secondary transition program for autistic young adults.
Steven Kapp
Dr. Steven Kapp is a Lecturer in Psychology at the University of Portsmouth in the UK. He completed a postdoctoral research fellowship on the Wellcome Trust-funded project Exploring Diagnosis: Autism and Neurodiversity at the University of Exeter, UK. Dr. Kapp edited the book Autistic Community and the Neurodiversity Movement: Stories from the Frontline, featuring analysis of first-hand accounts by leading autistic and allied activists, published by Palgrave Macmillan. His studies examine how conceptions of autism, neurodiversity, and support associate with identity, lived experiences, and quality of life. As a self-advocate he has supported systems change work for inclusive employment and influenced the DSM-5 autism diagnosis.
Dena Gassner
Dena is a PhD candidate at Adelphi University and serves is an inaugural member to the International Society for Autism Research (INSAR) Autistic Researcher Committee and has published many book chapters and journal articles in her career. In close partnership, she developed and honed leadership skills first with regional leadership (Tennessee Autism Task Force; Tennessee Post-secondary Task Force; Partners in Policy Making; Board Member for the Autism Society of Tennessee) and later with testimonies to the Interagency Autism Coordinating Committee (IACC), the Government Accountability Offices (GAO), the Department of Defense (DOD) and in 1999 was awarded the Cathy Pratt Professional of the Year Award from Autism Society of America. Since coming to the Arc Board of Directors, she has served on the Policy Committee for 6 years and as the Chair of the National Council of Self-Advocates for 4 years. Her contribution to the Arc's policies included the inclusion of LGBTQAI intersectionality and maternal wellness for mothers with IDD. She was appointed to the IACC's Mental Health Subcommittee of the Healthcare Disparities Workgroup and presented, "A Woman's Voice: Understanding Autistic Needs" for the National Institute of Mental Health (NIMH) Office of Autism Research Coordination (OARC). Her international advocacy has included multiple presentations around the world and specifically, three statements at the United Nations in New York and one in Geneva (autism and women; aging and autism). Her most recent UN invitation came from the countries of Malta and Australia and focused on autistic motherhood.
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