"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

SUBMITTER: Jose C 

PROVIDER: S-EPMC7520966 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature