Autistic people’s experiences of periods are under-researched – here’s why that needs to change
Periods can be painful, unpredictable and disruptive. And for autistic people, they can present additional challenges. From sensory sensitivities to barriers accessing healthcare, the experience of autistic menstruation remains under-explored in research.
Our new review highlights just how little we know about autistic experiences of periods – and why more inclusive research from autistic people themselves is needed.
Menstruation – the biological process in which blood is discharged through the vagina from the inner lining of the uterus – is often described as a negative experience. Periods can be irregular, heavy and painful. They may also affect a person socially and emotionally.
Despite 1.8 billion people across the world menstruating every month, period stigma still exists. For many, this leads to social isolation and negatively affects their access to appropriate menstrual education and products. And, while menstrual products and awareness have improved over the last few decades, many people across the globe are still unable to afford the products they need.
Incidences of structural sexism within education, the workplace and healthcare can negatively affect those who aren’t cisgender men. People assigned female at birth – including girls, women, transgender men and some non-binary people – who experience menstruation are affected by the historical focus on the male body in healthcare. For example, gynaecological conditions such as endometriosis are only now receiving attention within research, having previously been largely ignored.
Autism research has historically focused on cisgender men and boys. The experiences of autistic people assigned female at birth have only recently started to be researched, especially in relation to their reproductive care. What limited research does exist has shown poorer physical, mental and social wellbeing outcomes relating to their experiences of menstruation.
We reviewed existing studies that detail experiences of periods both from the point of view of autistic people and those who support them. We focused on research that had interviewed autistic people directly, and those within their social circle, about periods. Twelve sources, including research papers, articles and blogs, fitted our criteria, from which we identified the important themes.
Our sources included contributions from autistic people who were mostly teenagers and young adults, alongside parents, siblings, and medical and educational professionals. While the themes discussed depended on who was being spoken to, many autistic reflections focused on the need for information and practical support ahead of periods starting.
Read more: Why autistic people must be at the heart of autism research
Some interviewees described having autism-specific experiences during menstruation, such as increased sensory sensitivities and burnout (a state of exhaustion and personal withdrawal). These were often unseen by the people around them.
Parental and professional comments typically focused on the need for tailored support for their autistic children who were menstruating, with the end-goal of independence. Often, their comments set the child against neurotypical standards, the social norms of the majority.
Menstruation was described as a predominantly negative experience by everyone who was spoken to. But mentions of period stigma affected how comfortable autistic people were discussing this topic with others.
They were also less likely to access social networks and peer support in social environments such as schools. Very often because of this, autistic people weren’t provided with the knowledge they needed to compare their experiences with those of other people.
Pain
The dismissal of pain emerged as a significant issue. Many autistic people reported that their pain was normalised by those around them, including parents, siblings and school staff, regardless of its severity. They were told their level of pain was something everyone else also experienced and dealt with. Autistic people were also likely to internalise these messages until they became their own opinions and beliefs.
Since autistic people often perceive and communicate pain differently, this can lead to delays in seeking help – and being rejected when they do so.
The lack of autistic voices in research influences the kind of support that is developed. If resources are designed based on the priorities of parents or professionals rather than autistic people themselves, these resources may fail to meet the needs of the people having periods.
Read more: Autistic women face barriers to safe and supportive maternity care – new research
There are specific autism-related experiences of menstruation that we know less about because of the lack of research. Our review suggests autistic people are often held to neurotypical standards of menstrual management – without recognition of autism-specific factors such as sensory sensitivities, communication differences and the ways in which information is best conveyed.
We argue that future research on menstruation should include autistic voices, speaking to people of different ages and backgrounds about their experiences.
By prioritising autistic perspectives, we can develop more accessible resources and communication strategies that ensure this knowledge is transferred in ways that make sense for those who need it most. Tailored support could also help parents, carers and professionals better understand and respond to autistic experiences of menstruation.
If we want to create meaningful change, we need to start by listening to autistic people themselves.
Aimee Grant receives funding from the Wellcome Trust, Medical Research Council and the Morgan Advanced Studies Institute. She is a non-executive director of Disability Wales.
Monique Craine owns & runs Neurodivergent Matters. They are a member of Welsh Labour. They are part of the Independent Advisory Group for Dyfed Powys Police. Monique is also a community councillor for Tawe Uchaf Community Council.
Rebecca Ellis does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.