Development of a participatory research strategy involving autistic people with different levels of support needs.

Researchers developed a new way to study how COVID-19 isolation affected autistic people by including autistic individuals as partners in the research process. Autistic people helped design the study questions, review the research tools, and approve the final version. This approach made the research better and showed how important it is to include autistic people as research partners, not just participants.

This study describes the development of a participatory research methodology that actively involved autistic people with varying support needs in designing and validating a research instrument. The instrument was created to assess social isolation effects and coping strategies during COVID-19. The development process included four stages: domain definition, instrument design, validation, and final approval, with autistic people participating as co-researchers throughout. This approach enhanced the instrument's robustness while demonstrating the importance of including autistic people not only as research participants but as active collaborators in the research process itself.

This participatory methodology provides a framework for autism researchers to meaningfully include autistic people in research design and validation. The approach may improve research quality and relevance while promoting authentic collaboration. However, implementation guidance and effectiveness measures need further development for widespread adoption in clinical research settings.

The abstract does not report sample size, specific validation metrics, or quantitative outcomes of the participatory process. The study appears to be methodological rather than empirical, limiting generalizability of findings. No details provided about participant characteristics or recruitment methods.

This article describes the development of a participatory methodological study involving autistic people with varying levels of support needs in the design and validation of an instrument devised to assess the effects of social isolation during the COVID-19 pandemic and the strategies used to cope with the crisis. The development of the instrument involved the following stages: Definition of the domains to be assessed (researchers in consultation with experts and autistic people); Design of the instrument (researchers with the co-participation of autistic people); Validation of the instrument (by experts and autistic people, led by the researchers); and Final approval of the instrument (co-participation between researchers and autistic people). In addition to making the instrument more robust, the participation of autistic people in the design and application of the instrument reinforced the importance of strategies to include autistic people in research as both study participants and co-researchers.