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Going with the Flow (recorded presentation)

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Going with the Flow (recorded presentation)

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Going with the flow: a reflection on the transformational power of co-produced autism research

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 Co-author: “A perfect storm”: Autistic experiences of menopause and midlife (Autism: Brady et al., 2024) 

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 Co-author: “A perfect storm”: Autistic experiences of menopause and midlife (Autism: Brady et al., 2024) 

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PDF Text summary: Stepping into Who I Fully Am: A Creative Exploration of Autistic Menopause (first author) 

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PDF Text summary: Stepping into Who I Fully Am: A Creative Exploration of Autistic Menopause (first author) 

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Making an exhibition of myself - wearing Bridging the Silos Autistic Menopause Study research findings on a hand decorated shirt!

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Rose Matthews. Equity in Menopause Festival. World Menopause Day, 18th October 2024. #autismresearch

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First Author: Stepping into Who I Fully  Am: A Creative Exploration of Autistic Menopause (Mx Rose Matthews et al., 2025) 

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First Author: Stepping into Who I Fully  Am: A Creative Exploration of Autistic Menopause (Mx Rose Matthews et al., 2025) 

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International Journal of Disability and Social Justice, June 2025.

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Stepping into Who I Fully Am: A Creative Exploration of Autistic Menopause

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Research suggests that perimenopause can compound existing struggles for some Autistic people, with potentially catastrophic consequences. Barriers to self-expression due to communication differences are also well-documented. Acknowledging this, our neurodiverse research team invited creative submissions themed around Autistic experiences of menopause, receiving works from six Autistic participants including paintings, poetry, and graphic works. Engaging with the six creative submissions, Autistic Community Researchers on our team produced reflexive, polytextual response works. Creative exploration of Autistic menopause encouraged emotional catharsis, self-understanding, and activism/artivism. Autistic Community Researchers noted transcendent, almost “magical” dimensions of connecting with other Autistic people’s lived experiences. Our creative emancipatory approach enabled Autistic, multimedia responses which traditional research methods would not have elicited. To our knowledge, no other studies to date have used arts-based research to explore Autistic people’s experiences of menopause and inclusive research practices.

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Padlet: Autistic Experiences of Menopause 

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Padlet: Autistic Experiences of Menopause 

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Autistic Menopause: Curated Collection of Curiosities (narrated PowerPoint presentation)  

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Autistic Menopause: Curated Collection of Curiosities (narrated PowerPoint presentation)  

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Based on an art installation and workshop for #FlushFest Menopause 2023 (part of the Menopause Cafe Movement)

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Co-author: “Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring (Jade Davies et al., 2024) 

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Co-author: “Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring (Jade Davies et al., 2024) 

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Bridging the Silos Autistic Menopause Study: illustration for 4M Zine  

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Bridging the Silos Autistic Menopause Study: illustration for 4M Zine  

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"This art work is an overview of our 3-phase international study of #Autistic menopause: ‘Bridging the Silos’. It encapsulates themes from phase one: A perfect storm,  Complexity, multiplicity and intensity of symptoms, and insights from phase two:  ‘Stepping into who I fully am: A creative exploration of Autistic menopause’ (currently under review). Our theme ‘a perfect storm’ is contained in a circle which forms part of a stylised snow globe, representing the  isolation of Autistic menopause. A single fingerprint rests in the centre, symbolising my detention by the police after a catastrophic meltdown, two years before my very late autism diagnosis aged 58. I wrote about ‘the night I lost my freedom’ for Autism in Adulthood; a free to access preprint is available here: https://osf.io/qdsjb/ There are spiky intersected pieces in this illustration, with the jaggedness suggesting pain experienced during perimenopause and sharpness in relationships with others."

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Going with the Flow: Handout for International Creative Research Methods Conference workshop 

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Going with the Flow: Handout for International Creative Research Methods Conference workshop 

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Manchester 2024

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Cartoon feedback on the COAST project (training for social workers working with older Autistic people) 

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Cartoon feedback on the COAST project (training for social workers working with older Autistic people) 

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Fifty Years of Poverty in the UK - art installation 

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Fifty Years of Poverty in the UK - art installation 

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Pinterest Board

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Co-author: “Struggling for Years”: An international survey on Autistic experiences of menopause (Jenkins, Moseley et al., 2024)

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Co-author: “Struggling for Years”: An international survey on Autistic experiences of menopause (Jenkins, Moseley et al., 2024)

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“Struggling for Years”: An international survey on Autistic experiences of menopause - Christine A. Jenkins, Rachel L. Moseley, Rose J. Matthews, Margaret Janse van Rensburg, Julie M. Gamble-Turner, Miranda J. Brady, 2024

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Emerging research suggests that menopause can be a difficult transition for some Autistic people. This international co-produced survey explored factors that mi…

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Co-author: No “cookie cutter rules”: best practice for social care staff in supporting autistic adults with relationships and sexuality (Claire Bates, Rose Matthews)

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Co-author: No “cookie cutter rules”: best practice for social care staff in supporting autistic adults with relationships and sexuality (Claire Bates, Rose Matthews)

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Advances in Autism, Vol 10, Issue 2, 2024

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No “cookie cutter rules”: best practice for social care staff in supporting autistic adults with relationships and sexuality | Emerald Insight

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Co-author: Experiencing Independence: Perspectives from Autistic Adults (Piyali Bhattacharya et al., 2025) 

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Co-author: Experiencing Independence: Perspectives from Autistic Adults (Piyali Bhattacharya et al., 2025) 

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Journal of Autism and Developmental Disorders

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Experiencing Independence: Perspectives from Autistic Adults - Journal of Autism and Developmental Disorders

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Autism diagnostic criteria relate to difficulties in functioning across multiple developmental domains, that often impact on a person’s independence. There are different ways to conceptualise and exercise independence, but no previous studies have questioned how autistic adults do so. This qualitative study aimed to understand how autistic adults define and experience independence. It was designed to further our understanding of how autistic adults account for and use coping strategies to overcome barriers to independent living and navigate their way to their desired level of independence. Twelve semi-structured interviews were conducted with autistic adults living in the United Kingdom. The data were analysed using reflexive thematic analysis. The researchers generated three major themes. The first theme ‘Independence is “not a one-size-fits-all”’ highlights that there is no one definition or concept of independence for autistic people; these are relative and uniquely individual. The second theme ‘“Being autistic has its setbacks” in a neurotypical world’ describes the obstacles encountered by autistic adults seeking independence within a society that favours neurotypical norms. The third theme ‘Finding ways of making it work’ captures strategies autistic adults use in achieving or maintaining independence. The findings from this study provide a foundation for future research exploring domains of independence for autistic adults. The perceived desirability of achieving different degrees of in(ter)dependence and the fluctuating nature of self-sufficiency are explored through lived experience. Increasing understanding of barriers and challenges to independence has the potential to empower autistic adults and improve services and support.

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Unmasking Autistic Menopause Final Version Rose Matthews 27 05 2024 .pptx

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Sign in to your OneDrive cloud storage and Office Online.

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Bridging the Silos: Autistic Menopause Study Virtual Exhibition (play on laptop or desktop)  

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Bridging the Silos: Autistic Menopause Study Virtual Exhibition (play on laptop or desktop)  

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bridging the silos autistic menopause study autistic menopause study 'bridging the silos' is a 3-phase international research project funded by a gran

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The Night I Lost My Freedom, and Got It Back Again (Rose Matthews)

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The Night I Lost My Freedom, and Got It Back Again (Rose Matthews)

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Autism in Adulthood, 2022. Free to access version available on a separate post.

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The night I lost my freedom and got it back again - Rose Matthews (free to access pre-Print) 

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The night I lost my freedom and got it back again - Rose Matthews (free to access pre-Print) 

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Rose Matthews, published in Autism in Adulthood (see separate post)

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Reflections of a Neurodivergent Social Worker Who Didn't Know it at the Time - Rose Matthews 

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Reflections of a Neurodivergent Social Worker Who Didn't Know it at the Time - Rose Matthews 

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In Emergence, edited by Kelly Bentley-Simon and Siobhan Maclean

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Emergence Hidden Narratives from Neurodivergent Social Workers - Publications - Kirwin Maclean

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This anthology explores the intersection where the worlds of social work and neurodivergence meet, a space that is usually unseen, unheard and unknown. Within these pages you will meet social work students, their educators, and practitioners, who share their thoughts, experiences and hopes of this mostly hidden space.

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Interviewed for, and featured in, Naga Munchetty's 'It's Probably Nothing' Critical Conversations on the Women's Health Crisis   

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Interviewed for, and featured in, Naga Munchetty's 'It's Probably Nothing' Critical Conversations on the Women's Health Crisis   

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This book is a fantastic resource for women who are tired of being ignored or dismissed when they try to get help with health conditions.

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It’s Probably Nothing: Critical Conversations on the Women’s Health Crisis (and How to Thrive Despite It)

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Women’s healthcare is in crisis. It’s time to empower women to fight for the care they deserve. ‘Sizzling with rage and disbelief, here’s to a much-needed women’s health revolution.’ Emma Barnett ’This book will inspire women to be stronger advocates for themselves so they can access the healthca

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Interviewed for, and featured in, Kate Muir's 'How to have a magnificent midlife crisis' 

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Interviewed for, and featured in, Kate Muir's 'How to have a magnificent midlife crisis' 

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Loved being able to share my experiences as a late-in-life diagnosed Autistic person!

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How to Have a Magnificent Midlife Crisis

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The smart guide that every midlife woman needs to read … Forget everything you’ve been told about midlife. For millennia, women have been led to be…

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Supporting Autistic People Through Menopause - Dr Rachel Moseley & Mx Matthews (toolkit section)  

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Supporting Autistic People Through Menopause - Dr Rachel Moseley & Mx Matthews (toolkit section)  

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What are the most common challenges faced by people in this area?

Menopause can affect every aspect of life; physical and mental health, relationships, communication, employment and identity. For autistic people, who already face challenges, menopause may be particularly difficult. It generally occurs in mid-life, which also often involves additional demands and changes (eg in support networks, as parents age, become ill or die, or children leave home).

Being autistic is associated with poorer health outcomes, including increased risk of suicidality and self-harm. Several conditions commonly co-occur with autism including Ehlers-Danlos Syndrome, Postural Tachycardia Syndrome, gastrointestinal problems and sensory processing differences. Autism also often co-occurs with other neurodivergences (eg ADHD, Dyslexia, Tourette Syndrome). Autistic people face barriers accessing healthcare, and they may lack information about menopause.

The menopausal transition usually takes between four and ten years and involves unpredictability and change, which are especially challenging for autistic people. Anxiety may increase, emotions may become more difficult to regulate, new sensory sensitivities may emerge, and existing sensitivities may intensify. Trauma resulting from past bullying and abuse may surface having previously been suppressed. Menopausal symptoms may be amplified by autism, and autistic traits may be amplified by menopause, creating a 'perfect storm.'

Although autism is a largely invisible disability, it attracts considerable stigma and prejudice. Autistic people are at increased risk of unemployment, poverty, homelessness and abuse. They oftenhave limited social networks and may become more isolated as they age. Autistic people can also flourish and find fulfilment in later life. Positive aspects of menopause, ageing, and being autistic are all under-researched.

Some autistic people transition through menopause easily, while other people have significant difficulties. In the future it may be possible to predict who is likely to struggle and offer targeted support.

How best to support people to overcome the issues listed above?

find out about individual communication needs and preferences

educate yourself about autism and menopause - see links below

support the person to access online and/or in person support, including from the autistic community.

encourage self-advocacy but be prepared to advocate for the person if they prefer

have empathy for how exhausting and overwhelming life can be for an autistic person

reassure them that the symptoms don't last forever, and there are treatments. Encourage them to see a doctor, and be prepared to attend with them for support

consider safeguarding issues (given increased risk of abuse)

encourage self-care: interests, rest, healthy boundaries, self-compassion. Reassure them that it is not their fault if they're struggling with this transition

go at the person's pace, focusing on their priorities and desired outcomes.

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Supporting autistic people through menopause

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Menopause, like puberty, is one of several critical periods in development for women and people with ovaries, driven by changes in hormonal brain systems.

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Interviewed by Tanja Bächler on my lived experience as an older Autistic person, and the 'Bridging the Silos' Autistic menopause research study findings. 

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Interviewed by Tanja Bächler on my lived experience as an older Autistic person, and the 'Bridging the Silos' Autistic menopause research study findings. 

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Autism + Menopause EXPLAINED for Us, Late Diagnosed Autistic

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Wearing research results from the Bridging the Silos Autistic Menopause Study 

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Wearing research results from the Bridging the Silos Autistic Menopause Study 

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"A Perfect Storm": Autistic Experiences of Menopause and Midlife was the first paper we published from this research study.

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Exhibition of creative submissions and community researcher responses from the Bridging the Silos Autistic Menopause Research Study  

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Exhibition of creative submissions and community researcher responses from the Bridging the Silos Autistic Menopause Research Study  

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Curated by my Canadian Bridging the Silos colleagues: Miranda Brady, Margaret Janse Van Rensburg, and Christine Jenkins at MacOdrum Library, Carleton University, Canada.

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A PowerPoint presentation on late autism diagnosis, ageing, thriving, and end of life.

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Last but not least Autism late diagnosis and ageing .pptx

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4 Questions For: Autistic Experiences of Menopause Study - Neurodiverse Connection 

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4 Questions For: Autistic Experiences of Menopause Study - Neurodiverse Connection 

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Blog and resources by Rose Matthews

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4 Questions For: Autistic experiences of menopause study — Neurodiverse Connection

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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 Unive