The INSAR Community Collaborator Request: Using community–academic partnerships to enhance outcomes of participatory autism research

Author:

Poulsen Rebecca12ORCID,Dwyer Patrick345,Gassner Dena67,Heyworth Melanie28,Williams Zachary J.910111213ORCID

Affiliation:

1. Macquarie University Hearing, Department of Linguistics, Faculty of Medicine, Health and Human Sciences Macquarie University Sydney New South Wales Australia

2. Reframing Autism St Leonards New South Wales Australia

3. Center for Mind and Brain, University of California Davis Davis California USA

4. Department of Psychology University of California Davis Davis California USA

5. MIND Institute, UC Davis Health Sacramento California USA

6. School of Social Work, Adelphi University Garden City New York USA

7. Department of Health Sciences Towson University Towson Maryland USA

8. Macquarie School of Education, Macquarie University Sydney New South Wales Australia

9. Medical Scientist Training Program Vanderbilt University School of Medicine Nashville Tennessee USA

10. Department of Hearing and Speech Sciences Vanderbilt University Medical Center Nashville Tennessee USA

11. Vanderbilt Brain Institute, Vanderbilt University Nashville Tennessee USA

12. Frist Center for Autism and Innovation, Vanderbilt University Nashville Tennessee USA

13. Vanderbilt Kennedy Center, Vanderbilt University Medical Center Nashville Tennessee USA

Abstract

AbstractParticipatory approaches, in which researchers work together with members of the autism community (e.g., autistic people, family members, caregivers, or other stakeholders) to design, conduct, and disseminate research, have become increasingly prominent within the field of autism research over the past decade. Despite growing academic and community interest in conducting participatory studies, stakeholder collaboration remains infrequent in autism research, at least partially due to systemic barriers. To help reduce barriers to engaging in participatory autism research, the International Society for Autism Research (INSAR) Autistic Researchers Committee has launched the INSAR Community Collaborator Request (ICCR; https://www.autism-insar.org/page/iccr), a platform on the INSAR website that allows autism researchers conducting participatory research to seek out stakeholder collaborators from the autism community (including both autistic people and their family members/caregivers, as relevant to a given research project). Interested stakeholders also have the opportunity to subscribe to ICCR posts, allowing them to be alerted of new opportunities for collaboration and potentially increasing their involvement in autism research. Overall, the ICCR provides a venue to connect autism researchers with potential community collaborators, reducing barriers to participatory autism research and increasing the frequency of successful community–academic partnerships within the field. We are hopeful that in the long term, such changes will lead to greater alignment between research outputs and the goals of the greater autism community, and consequently an increase in the overall quality and relevance of autism research.

Publisher

Wiley

Subject

Genetics (clinical),Neurology (clinical),General Neuroscience

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