Inequities in Community-Engaged Autism Research: Community Member Perspectives.

Abstract

Background: A history of exclusion and barriers to research participation exists for autistic individuals. Barriers to full community engagement have left under-engaged members of the autism community feeling isolated, frustrated, distrustful, and less informed about opportunities for research participation.

Objectives: This study aimed to identify gaps in community-engaged research (CEnR) approaches in autism research by examining autism stakeholders' (autistic adults, autism caregivers/parents, and service providers) perspectives about the risks, benefits and gaps in CEnR and suggestions on addressing the gaps related to autism research priorities.

Methods: Via qualitative narrative inquiry (n = 53), using a 16-item semi-structured instrument, we collected data from autism stakeholders representing different lived experiences and perspectives among autism communities. We primarily recruited via major autism advocacy and research organizations. Transcripts from a focus group (n = 6) and individual interviews (n = 47) were thematically coded.

Results: Participants expressed a lack of diverse representation in autism CEnR and in autism research subject populations. They suggested that an approach to community engagement that includes those often excluded from the process, and creates shared ownership in the decision-making process and a trusted platform for the autism community across demographic and diagnostic characteristics is important for understanding how to translate that information into effective and inclusive approaches.

Conclusions: Autism stakeholders value research inclusivity, are interested in research participation, have the ability to make their own participation decisions with and without support from others (dependent on their preferences), and believe that research about adults with autism is important and beneficial towards addressing complex problems related to access to care.