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.