Communication Research Priorities for Autism Research: Insights from a Caregiver Survey

Currently, autism researchers have limited knowledge about stakeholders' priorities for research. This raises concerns because the autism community has increasingly called for more involvement in research. The present study aimed to provide initial insight into caregiver's priorities for research that specifically focuses on language and communication in autistic children. Seventy-three caregivers of autistic children completed an online survey with an option to participate in a follow-up feedback session (n = 14). Within the survey, caregivers ranked the importance of 15 communication research topics. Participants also answered questions about barriers and incentives to participating in research. Caregivers highly ranked research that focuses on learning new words, echolalia, and learning to read. Additionally, 87% indicated that they would participate in research that did not involve intervention for their child. The top barrier to participating in autism research was time, and the top incentive was if a study was virtual. Associations between priority rankings and child language skills were also explored. Word learning research was particularly important to caregivers of children who communicated using shorter utterances or through augmentative and alternative communication devices, and research that focused on abstract language was particularly important to parents of autistic children with more advanced language skills. Caregiver feedback sessions provided additional insight into the rankings of research priorities. Caregivers of autistic children value pediatric language and communication research. Many valued research topics aligned with clinical goals in therapy (e.g., learning new words) and skills that highlight less understood learning and communication processes (e.g., echolalia). We discuss how these data can guide researchers as they conduct future autism research.