How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study

Abstract

Background: Recent studies suggest that the funding breakdown of autism research in the United States may not align with stakeholder priorities. Furthermore, the majority of stakeholder-engaged research involves parents of autistic individuals rather than autistic adults themselves, who may have differing perspectives on research and funding priorities. Women and non-binary adults have been historically underrepresented in autism research. Objectives: The goal of the current study was to examine the autism research priorities of a group of autistic adults, with a particular focus on how these priorities are influenced by one’s gender identity. Design: A concurrent mixed-methods design was used for this study. Methods: Seventy-one autistic adults ( n = 18 men, n = 29 women, n = 24 non-binary adults) completed an online survey regarding the current funding landscape for autism research. Participants ranked the main research topics of the Interagency Autism Coordinating Committee (IACC) and identified top-priority research areas through free-text responses. Response themes were analyzed using content analysis and compared with the existing topic rankings. Results: Overall rankings of IACC research areas had a near inverse relationship with the amount of funding per research area. Main themes of stakeholder-generated research topics included “Characterization,” “Societal Change,” “Well-Being & Trauma,” “Diagnosis & Healthcare,” and “Accessibility & Services.” There was a relatively high overlap between topics identified by the IACC and by the stakeholder-generated topics. Subtle but important differences in topics arose based on gender, with women and non-binary adults identifying topics that were not identified by autistic men. Conclusion: Unique priorities generated by those typically excluded from autism research development underscore the importance of co-creating research with underrepresented stakeholders impacted by this work. The current study echoes the growing movement in the field of autism research to center autistic perspectives at every stage of research, including the establishment of funding priorities.

Gender and family-role portrayals of autism in British newspapers: an intersectional corpus-based study

“…Recently, autism research has aimed to remove participation barriers and improve inclusion for underrepresented groups (Duhon et al, 2022;Nicolaidis et al, 2019). Studies mapping research priorities for the autism community emphasise understanding intersecting autistic identities and supporting their diverse needs (Cage et al, 2024;Pellicano et al, 2014;Putnam et al, 2023). Despite progress and efforts to disseminate research through press coverage (Longo & Hand, 2022), there is likely still a lag between advancements in research and their reflection in newspapers.…”

Anti-ableism and scientific accuracy in autism research: a false dichotomy

“…As these efforts continue, it remains incumbent on biomarker researchers to articulate how biomarkers will improve identification and clinical care, as biomarker testing is often more labor-intensive, more invasive, and less accessible to people in need than established methods. Further, biomarker researchers should address concerns from the autistic community about the underlying motivation for biological research funding [e.g., cure and prevent autism; (39)], which often comes at the expense of other funding and research needs prioritized by autistic people (40)(41)(42)(43)(44)(45)(46).…”

Ethical challenges in autism genomics: Recommendations for researchers

“…6,16,17 In contrast, many do not endorse efforts to find causes of autism. 15,[18][19][20][21][22] In a recent survey (n=6,004) with autistic (8.1%) and non-autistic respondents, studies on genetic markers and prenatal screening arose as an area to avoid. 18 Standing in contrast to traditional positions of non-autistic-led charities, the Autistic Self Advocacy Network has issued a position statement: "As genetic research continues to develop, autistic people must have our say in how it should be used, and not used."…”