UCLA

Purpose: The funding breakdown of autism research diverges with the research priorities of the autism community and stakeholders (Putnam et al., 2023), prompting concern about the disconnect between researchers and the autism community (Keating, 2021). This study aims to address this gap in the literature through an exploration of autistic adults’ opinions of the current research landscape and what autism research should address through a survey disseminated to the autistic community. Design/methodology/approach: In total, 89 autistic adults completed the survey. Participants rated their agreement to statements with a five-point Likert scale, ranging from “Strongly Disagree” to “Strongly Agree.” Participants were asked “What should autism research be focused on?” and answered via long answer text. Findings: A numerical difference was found in participants’ ratings of autism research as more harmful than helpful. Participants who identified as nonbinary felt the research community was significantly less helpful and more harmful to the autistic community than those who identified as male (p < 0.01). Nonbinary participants expressed that community involvement in autism research is lower than those who identified as males or females (p < 0.01). Six main themes were identified: “Representation of Diversity in Gender and Ethnicity,” “Improving Quality of Life,” “A Strength-Based Approach,” “Autistic Subjective Experiences,” “Comorbid Mental and Physical Health Disorders” and “Autistic People Involved in Research.” Originality/value: This research identified intersectional relationships between identity and feelings about autism research and explored recommendations from the autistic community on autism research that serves the best interests and desires of the community.