The INSAR Community Collaborator Request: Using community-academic partnerships to enhance outcomes of participatory autism research.
A new free board lets autism researchers recruit autistic and caregiver partners in minutes instead of months.
01Research in Context
What this study did
INSAR built a free web board called the ICCR. Researchers post what kind of autistic adults, parents, or caregivers they need for a study.
Community members reply if they want to help. The paper only explains how the board works. No data on how many matches happen yet.
What they found
The portal is live. Any autism researcher can list a project and ask for partners. Autistic people and families can join without going through a university.
How this fits with other research
Jones (2023) asked 37 autistic professors what helps or hurts their careers. Both papers push the same idea: include autistic voices from the start.
Luecking (2011) wrote a how-to guide that matches employers with job seekers who have ID. The ICCR copies that match-making logic, but for research instead of jobs.
Johnson et al. (2009) built an online database for Prader-Willi studies across Europe. Like the ICCR, it is a free web tool meant to speed up rare-disease research.
Why it matters
If you run autism studies you no longer have to cold-call schools or post on generic sites. Post on ICCR and autistic partners find you. Start there next time you write a grant that asks for community input.
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02At a glance
03Original abstract
Participatory 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.
Autism research : official journal of the International Society for Autism Research, 2023 · doi:10.1002/aur.3027