4 Questions For: Autistic experiences of menopause study

Four Questions For
Written By Rose Matthews

In this installment of our 4Q4 (Four Questions For) blogs, we speak with Rose Matthews, Community Research Associate on the Bridging the Silos: Autistic Menopause Study, an international co-produced research study bringing together Autistic community representatives and academics from Carleton University in Canada and Bournemouth University in the UK.

01 Why is the research important? 

Just having that sense of community, having that sense of common cause, that sense of I’m not alone in this, I’m not weird, I’m not isolated.”

— Participant, ‘Bridging the Silos’: Autistic Menopause Study

Both menopause and Autism have been in the spotlight recently but like many other issues associated with midlife and ageing, experiences of Autistic people during perimenopause are poorly understood. This is despite emerging evidence from research suggesting that Neurodivergent menopause may be particularly challenging. The potential for crisis is hardly surprising given the significant overlap between menopause symptoms and Autistic characteristics, which are heavily influenced by the strain of neurominority status. This is what motivated us to research Autistic menopause.  

Cognitive challenges, sleeping problems, emotional volatility, relationship difficulties, employment problems, sensory sensitivities and trauma from victimisation and abuse can create what our research participants described as “a perfect storm”. Conversely, other Autistic and Neurodivergent people sail through the menopause—barely noticing it at all. We need to understand more about who struggles and why, and what kinds of information and supports are most likely to be beneficial.     

Menopause experiences are often nuanced compared with stereotypical popular culture portrayals. Our research recognises the complexity of navigating this critical life stage. The problem is in part structural (there’s little co-ordination between different services and supports) knowledge and practice are fragmented, even within medicine—hence our study name: ‘Bridging the Silos’.

02 Why does involvement matter, and how has it shaped your work?

Autistic people have helped to identify our research topics to ensure a better fit with community priorities, and our team is made up of Autistic and allistic researchers. Participatory approaches produce higher quality research with far greater impact. Co-production is also more ethical: The disability activism slogan, “nothing about us without us” remains relevant today. We are “shaping the future together”.

The idea for the Bridging the Silos research study formed during a conversation between Christine A. Jenkins a Canadian Autistic advocate with lived experience of menopause and a Canadian academic. The research team now includes two Autistic Community Research Associates and four academics from Canada and the UK, led by Dr Miranda Brady at Carleton University, Ottawa.

Menopause affects anyone who ovulates, and while earlier research into Autistic menopause focused exclusively on women, our study deliberately expanded its scope beyond gender binaries. Unfortunately, despite our efforts, we had limited success attracting people from marginalised racial and ethnic backgrounds, which may be in part from the lack of racial diversity in our research team. We have learned a great deal from the strengths and limitations of our approach.

To ensure that our methodology was underpinned by lived experience we carried out interviews and focus groups with Autistic people in the first phase of our project, which informed the design of an international survey in phase three, the results of which are currently under analysis. In phase two we invited creative submissions about Autistic menopause experiences. The Community Research Associates also responded expressively and reflexively to these works of prose, poetry, painting, and graphic design.

03 How might your findings be useful and help shape services? 

The first published paper from our research study: ‘ “A perfect storm”: Autistic experiences of menopause and midlife’ reports the findings of phase one focus groups and interviews. Participants from Canada and the UK reported remarkably similar experiences of being misunderstood, disbelieved, and excluded from services.

Research findings only have impact if they are mobilised and shared with the wider world. The audiences we are trying to reach are many and varied: Autistic and Neurodivergent people, their families and friends, health and social care professionals, menopause specialists, politicians and policy makers, welfare benefits agencies, criminal justice services, and employers.

We’ve contributed to several initiatives already: the drafting of a BSI Standard on Menstruation, Menstrual Health and Menopause in the Workplace; revision of the NICE guidance on menopause, and a parliamentary meeting focusing on inclusive menopause. We’re delivering talks and webinars, creating pop-up exhibitions and workshops, recording podcasts, and contributing to toolkits.

We’re constantly on the look-out for ways to bring about positive change in the knowledge and understanding that Autistic people have about menopause, and to improve the responses that they get when they seek information and support.

04 Can you recommend any good resources or literature on this research topic? 

The website for our research study is www.autisticmenopause.com  

One of our team, Dr Rachel Moseley has her own website with lots of information about autism, mental health, and menopause: www.scienceonthespectrum.net 

Each of the Community Research Associates also has a website:  

Dr Moseley, Prof Julie Gamble-Turner, and colleagues previously published two groundbreaking papers on autism and menopause: 

Rose Matthews

Guest Contributor
they/them

Rose Matthews is a late diagnosed Autistic person and independent autism researcher based in North East England who was a social work academic earlier in their career. Rose has a particular interest in the mid to later life experiences of Autistic people, which tend to be neglected in research and service provision. Rose is a Community Research Associate on the Bridging the Silos: Autistic Menopause Study an international co-produced research study bringing together Autistic community representatives and academics from Carleton University in Canada and Bournemouth University in the UK.

@NortherlyRose

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