“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Abstract

Background Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science

“…It is not, surprising, then, that the vast preponderance of autism research worldwide focuses on the underlying genetic causes and biology of autism (den Houting & Pellicano, 2019;Office of Autism Research Coordination, 2019;Pellicano, Dinsmore, & Charman, 2014b;Singh, Illes, Lazzeroni, & Hallmayer, 2009). This focus is in sharp contrast to the stated research priorities of community membersautistic people, their family members, educators, clinicians and other professionalswho have consistently called for research on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications (Frazier et al, 2018;Jose et al, 2020;Pellicano et al, 2014b;Robertson, 2010;Roche, Adams, & Clark, 2021;Warner, Parr, & Cusack, 2019). In the words of one parent, 'when it comes down to it, it's not real life .…”

A capabilities approach to understanding and supporting autistic adulthood

“…There are some excellent examples of autism research that uses participatory approaches 40 , 181 , 312 , 313 , but it is still very much in its infancy. Although there is much enthusiasm for involving autistic people in the decisions that influence them 314 , 315 , researchers can be worried about how time-consuming participatory research can be, can find it hard to relinquish control in research decision-making and worry that community members might introduce bias into otherwise rigorous research processes.…”

Applying a public health approach to autism research: A framework for action

“…Stakeholders include autistic individuals, care providers, service providers, educators, clinicians, agency administrators, and policymakers. Their engagement is critical for understanding diverse experiences and perspectives, fostering research that is responsive to local level systems and needs, implementing acceptable and feasible community‐level responses, and identifying opportunities for policy development and improvement (Dewinter et al, 2020; Jose et al, 2020; Kuo et al, 2018; Roux et al, 2018; Shea et al, 2021; Snell‐Rood et al, 2020; Stahmer et al, 2019). The integration of research questions, study design, and interpretation of results via interdisciplinary science partnerships can advance knowledge more swiftly than endeavors limited within traditional disciplinary boundaries.…”

“…The activities undertaken at the Translation/Dissemination/Implementation stage are critical for the transformation of research knowledge into actionable steps to improve public healthfor example, health insurance (Dewinter et al, 2020;Jose et al, 2020;Kuo et al, 2018;Roux et al, 2018;Snell-Rood et al, 2020;Stahmer et al, 2019). The integration of research questions, study design, and interpretation of results via interdisciplinary science partnerships can advance knowledge more swiftly than endeavors limited within traditional disciplinary boundaries.…”