A new hub for participatory research: Q&A with Zachary Williams

Abstract

When Zachary Williams joined the Autistic Researchers Committee of the International Society for Autism Research (INSAR), he that knew one of the group's priorities would be to promote participatory research -an approach in which scientists work with autistic people and other members of the autism community to design, conduct and interpret the results of their experiments.But that priority really started to take shape when the committee itself solicited input. "One of the questions we got was, 'I love this idea of participatory research, but how do I go about finding people to be my community partners?'" says Williams, a medical and doctoral student at Vanderbilt University in Nashville, Tennessee.[posts], who is going to be the group of researchers who makes these, or what this will turn into.And a lot of that really just depends on community usage. S: Are you getting good feedback so far? ZW: Yeah! The funniest thing was that two or three people who didn't know that I made this sent it to me, like, "Zack, look at this; it seems like it's right up your alley." And -yes, it is!

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

“…To address the lack of a centralized database for researchers to find collaborators for participatory research studies, the INSAR Autistic Researchers Committee has recently launched the INSAR Community Collaborator Request (ICCR; https://www.autism-insar. org/page/iccr), which is freely accessible on the INSAR website via the "Resources" tab (Askham, 2022). This initiative seeks to connect autism researchers with autism stakeholders (i.e., autistic people and/or their family members/caregivers) who are interested in partnering with those researchers in designing, conducting, and disseminating autism research studies.…”

“…However, in recent years, a greater number of academic autism researchers without prior participatory research experience are now seeking to incorporate autistic and other stakeholder perspectives into their work through methods as diverse as individual consultation, establishment of community advisory boards, and inclusion of autistic individuals as coresearchers or even coprincipal investigators (PCORI, 2020; Bennett et al, 2022; Brown et al, 2022; Fletcher‐Watson et al, 2019, 2021; Jones, 2021; Poulsen et al, 2022). Anecdotally, the authors of this commentary (all of whom are autistic researchers and all but one of whom [Melanie Heyworth] are members of the International Society for Autism Research [INSAR] Autistic Researchers Committee) are aware of an even larger number of autism researchers who have expressed interest in potentially conducting participatory autism research studies but are unsure of how to begin or where to find stakeholders with whom to collaborate (Askham, 2022). This sentiment was echoed at the INSAR 2018 Annual Meeting in Rotterdam, where similar questions about how to find community collaborators were raised during a Special Interest Group meeting on “Incorporating autistic intellect in the research community as employees and consultants.” Thus, in order to make participatory research methods accessible to a greater number of autism researchers, additional supports are needed to facilitate the development of productive collaborations between academic researchers and autism stakeholders.…”