“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

Lay Abstract Previous studies have asked autism community members (parents of young children, autistic adults, caregivers of adults) about their views towards autism research, and found that community members are motivated to participate in research that they think will be helpful to the community or themselves/their child. They also found that personal values play a large role in the decision to engage with a research study. To our knowledge, this study is the first to focus on gender while examining study participation. We interviewed groups that have historically been underrepresented in autism research: autistic women, autistic non-binary people, and parents of autistic girls. Our results were very similar to studies focused on other community members, but one new motivator to participate in autism research for these underrepresented groups was the idea of improving the representation of their gender in autism research. By focusing on groups that have been historically under-recruited as autism research participants, we were able to identify group-specific suggestions for how autism researchers can make the experiences of their participants more comfortable and fair.