“I’m Excited to Have my Voice Heard”: Understanding Autism Research Participation From the Perspective of Autistic Women, Non-Binary Adults, and Parents of Autistic Girls

The purpose of this qualitative study is to better understand how underrepresented gender groups within the autism community engage with autism research as participants. Using reflexive thematic analysis of semi-structured interviews with autistic women, autistic non-binary adults, and parents of autistic girls/women ( N = 41), we identified themes that encompass motivations to participate in research, barriers to participation, and elements of a research study that facilitate or hinder the research experience. Some themes overlapped with previous research with different groups of community members. However, other themes surrounding representation in autism research and the importance of community in facilitating research participation were novel and particularly salient among members of these underrepresented gender groups. This study builds upon previous research aimed at understanding gender-specific research priorities to extend the field's understanding of research participation for these historically underrepresented groups. Themes from the current study can therefore improve the facilitation of future research partnerships with members of this community to achieve shared research goals moving forward.