"It's Really Complicated": Engaging Key Stakeholders to Inform a Novel Parent-led Sexual Health Education Program for Autistic Youth.

Abstract

Autistic adolescents frequently encounter difficulties in managing changes associated with puberty, sexuality, and relationships, and parents may be a useful source of sexual and reproductive health education (SRE) for this population. Despite this, few evidence-based programs exist to support parents in this role. Thus, there is a need for the development of such programs, particularly those incorporating the lived experiences of key stakeholders. The present qualitative investigation aimed to determine the SRE needs of autistic youth and to inform a novel, parent-led SRE program. Data were collected through semi-structured interviews conducted with two rounds of focus groups with two stakeholder groups: parents of autistic children (N = 4) and adult autistic self-advocates (N = 4). Focus groups were recorded and transcribed verbatim. The research team conducted rapid qualitative analysis on all four transcripts, and major findings were summarized and triangulated across groups. Four overarching themes were identified: "Empower parents as educators," "Individualize supports and education," "Consider cultural and intersecting identities," and "Prioritize safety." Parents can serve a primary role in providing SRE to autistic youth and would likely benefit from participating in a tailored program that prioritizes safety and considers the influence of culture and other aspects of identity on content delivery. Future research on the implementation of such a program is needed.