Active Mental Health Pregnancy, Children & Inherited Conditions

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

In plain English

AI plain-English summary

Autistic people with wombs—women, non-binary people, and trans men—will share their experiences of menstruation, pregnancy, and menopause in up to ten interviews each over five years, guided by a community council of autistic adults. This matters because autistic people make up 1–2% of the population yet have worse physical and mental health than non-autistic peers, and their reproductive health has been largely ignored by researchers. The study directly addresses that gap by centring autistic voices rather than relying on assumptions from clinicians or past studies. If the research succeeds, it will produce a new quality-improvement intervention for gynaecological and obstetric services, co-designed with health professionals and the autistic community. That could change how doctors discuss periods, fertility, and menopause with autistic patients—reducing misdiagnosis, unnecessary distress, and avoidance of care. It also builds Wales’ first participatory Autistic Research Community Council, giving autistic people ongoing power to shape future studies. The project is applied, not fundamental science: its goal is immediate improvement in healthcare delivery and community capacity, not discovery of biological mechanisms.

View original technical description
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.

View the original record at the funder ↗

Researchers

Aimee Grant (EPMC Awardee)

Related Research

Grants with similar aims, by meaning.

Understanding Pathways from Environmental Risk to Internalising Problems for Autistic Young People
"She's autistic - but I don't see any of that." An exploration of secondary school teachers' perceptions of autism in female adolescents
Autism - Understanding Developmental trajectories, and Inequalities in diagnosis and Treatment in adults aged 50 and over (AUDIT-50)
Playing A/Part: investigating the experiences of autistic girls through drama, interactive media and participatory arts.
A sociolinguistic approach to the identity construction of and medical discourses about women with a late diagnosis of autism.

Original classification

Career Development Award

Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.