Autism from menstruation to menopause: Participatory community led qualitative longitudinal research to understand Autistic reproductive experiences throughout the life course and improve healthcare services

Autistic people - accounting for 1-2% of the population - have worse physical and mental health outcomes than their neurotypical peers, but Autistic adults have been neglected in health research. Furthermore, reproductive health, including menstruation, maternity, and menopause, are under-researched.

Using a Critical Autism Studies paradigm within a community-led project, this study aims to generate significant shifts in understanding of Autistic reproductive health experience.

First, this ambitious participatory research project includes establishing Wales’ first participatory Autistic Research Community Council to oversee the project.

Second, qualitative longitudinal methods will be used to understand Autistic people with wombs’ (women, non-binary and trans men) reproductive health experiences across the life course, including their interaction with healthcare services and their unmet needs. 100 participants from four life course stages (young; non-mothers; mothers; peri-menopausal) will each take part in up to 10 in-depth visual methods facilitated interviews over a five-year period (total n=1,000).

Third, in collaboration with the Autistic Research Community Council, a new quality improvement intervention for reproductive health services will be co-produced with health professionals.

In doing so, the study has strong potential for wide-reaching impact, both in relation to improving gynaecological and obstetric healthcare, but also in Autistic community capacitation.