Development of Policy Recommendations to Support a National Autism Strategy: Case of a Virtual and Inclusive Stakeholder Engagement Process

Document Type : Viewpoint

Authors

1 Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

2 School of Public Policy, University of Calgary, Calgary, AB, Canada

3 Department of Community Health, Faculty of Human and Social Sciences, Wilfred Laurier University, Waterloo, ON, Canada

4 Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada

5 Faculty of Education, University of British Columbia, Vancouver, BC, Canada

6 Autism Alliance of Canada, Toronto, ON, Canada

7 New York University, New York City, NY, USA

8 School of Public Policy and Faculty of Kinesiology, University of Calgary, Calgary, AB, Canada

9 Autism Alliance of Canada, Ottawa, ON, Canada

10 Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

Keywords


Introduction

Autism is a lifelong neurodevelopmental condition estimated to affect one in 54 people,1 whose prevalence is not affected by geography, race, or socioeconomic factors.2  Autistic individuals experience barriers to participation in society, and, to address this, Canada has committed to implementing policies aligning with the priorities of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD).3 ...(Read more...)

  1. Maenner MJ, Shaw KA, Baio J, et al. Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveill Summ. 2020;69(SS-4):1-12. doi:15585/mmwr.ss6904a1
  2. Elsabbagh M, Divan G, Koh YJ, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Research. 2012;5(3):160-179. doi:1002/aur.239
  3. United Nations General Assembly. Convention on the Rights of Persons with Disabilities. United Nations; 2007. https://www.un.org/en/development/desa/population/migration/generalassembly/docs/globalcompact/A_RES_61_106.pdf. Accessed August 19, 2022.
  4. Canadian ASD Alliance. Blueprint for a National Autism Spectrum Disorder Strategy How the federal government can lead. CASDA; 2019. https://www.casda.ca/wp-content/uploads/2019/03/Blueprint-for-a-National-ASD-Strategy.pdf. Accessed July 15, 2021.
  5. National Autism Strategy. Government of Canada. 2021. https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd/national-strategy.html. Updated April 26, 2021. Accessed December 1, 2021.
  6. Embrett M, Liu RH, Aubrecht K, Koval A, Lai J. Thinking together, working apart: Leveraging a community of practice to facilitate productive and meaningful remote collaboration. Int J Health Policy Manag. 2021;10(9):528-533. doi:34172/ijhpm.2020.122
  7. Mulvale G, Chodos H, Bartram M, MacKinnon MP, Abud M. Engaging civil society through deliberative dialogue to create the first Mental Health Strategy for Canada: Changing Directions, Changing Lives. Soc Sci Med. 2014;123:262-268. doi:1016/j.socscimed.2014.07.029
  8. Prince M. Absent Citizens: Disability Politics and Policy in Canada. Toronto: University of Toronto Press; 2009.
  9. Nicolaidis C, Raymaker D, McDonald K, et al. Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic–community partnership with autistic self-advocates. Prog Community Health Partnersh. 2011;5(2):143-150. doi:1353/cpr.2011.0022
  10. Arnstein S. A Ladder of Citizen Participation. J Am Inst Plann. 1969;35(4):216-224. doi:1080/01944366908977225
  11. Li L, Grimshaw J, Nielsen C, Judd M, Coyte P, Graham I. Evolution of Wenger's concept of community of practice. Implement Sci. 2009;4(1). doi:1186/1748-5908-4-11
  12. Bertone M, Meessen B, Clarysse G, et al. Assessing communities of practice in health policy: a conceptual framework as a first step towards empirical research. Health Res Policy Sys. 2013;11(39). doi:1186/1478-4505-11-39
  13. Jiménez-Zarco AI, González-González I, Saigí-Rubió F, Torrent-Sellens J. The co-learning process in healthcare professionals: Assessing user satisfaction in virtual communities of practice. Comput Human Behav. 2015;51(Part B):1303-1313. doi:1016/j.chb.2014.11.057.
  14. Bricout J, Baker PMA, Moon NW, Sharma B. Exploring the smart future of participation: community, inclusivity, and people with disabilities. International Journal of E-Planning Research. 2021;10(2):94-108. doi:4018/IJEPR.20210401.oa8
  15. Ale Ebrahim N, Ahmed S, Taha Z. Virtual Teams: A Literature Review. Aust J Basic Appl Sci. 2009;3(3):2653-2669.
  16. Cascio M, Weiss J, Racine E. Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature. Rev J Autism Dev Disord. 2021;8(1):22-36. doi:1007/s40489-020-00204-z
  17. Canadian ASD Alliance. Policy Compendium: The Development of a National Autism Strategy through Community and Stakeholder Engagement. CASDA; 2020. https://www.casda.ca/policy-compendium/. Accessed July 15, 2021.
  • Receive Date: 16 February 2022
  • Revise Date: 26 August 2022
  • Accept Date: 07 September 2022
  • First Publish Date: 10 September 2022