Written evidence submitted by Dr Rachel Moseley [WRH0022]



I am Dr Rachel Moseley, principal academic in Psychology at Bournemouth University. My research focuses on wellbeing, mental health and suicidality in autistic people. My colleague and I conducted the first ever research on autistic experiences of the menopausal transition (study 1; study 2). We have conducted three other studies on this topic which await publication. 


My evidence will focus on autistic women and autistic people with ovaries* as a disadvantaged group in relation to reproductive health. I will focus on their experiences of menopause**, though I will refer to broader reproductive health in this group.










To contextualise my evidence, the following points are relevant:



  1. What disparities exist in the treatment and diagnosis of gynaecological or urogynaecological conditions?



a)    Autistic people struggle to identify that they are experiencing menopause, hence will struggle to seek appropriate help.


Our published and unpublished work to date suggests that autistic people often enter menopause with little knowledge and awareness of what to expect. Most participants stated that they had little understanding of what menopause was and what it might entail, and what could be done to manage the symptoms.


Many will struggle to identify that what they are experiencing is menopause: “I thought I was going mad… or had some terrible disease”

This means that they will struggle to identify appropriate healthcare services to approach.


To fully understand the context of this, it is important to consider several background facts:


With these broader contextual facts considered, our research suggested that many autistic people will struggle to identify that menopause is happening for them. This is down to several reasons:


People do not know where to look for help if they cannot figure out what is going on, and often have no faith in the healthcare system – see next point.



b)    When they seek support with menopausal symptoms, autistic people often have experiences that are dissatisfying at best and traumatic at worst.


Our studies were not particularly interested in healthcare around the menopause. It is therefore striking that negative or difficult healthcare experiences have emerged as a strong theme throughout all of our work.


The vast majority of our participants expressed dissatisfaction with NHS services (“trauma upon trauma upon trauma”; the NHS is “just a mill” – work unpublished at present).


Autistic people will typically go into menopause with greater likelihood of past  negative experiences in mental healthcare (Brede et al., 2022; Camm-Crosbie et al. 2019), and past negative experiences in primary healthcare (Weir et al., 2022; Brice et al., 2021). They often report barriers such as not knowing whether symptoms justify a visit, getting through the process of getting an appointment, and difficulties communicating with doctors (Doherty et al., 2022).


From their side, frontline and specialist healthcare professionals lack confidence working with autistic women (Crane et al., 2019; Unigwe et al., 2015). Autistic women have high rates of mental and physical comorbidities and chronic illnesses, so will often be seen as “difficult” or “problem” patients (see, for e.g., example 1, example 2)


Participants in our research did not trust healthcare professionals to be knowledgeable, supportive and/or helpful.


Quotes and situational examples from our research (study 1; study 2) include:



c)     Autistic people may have less uptake of hormone replacement therapies.


There is presently no data concerning the uptake of hormone replacement therapy by people recognised to be autistic. However, given that our research shows

a)      Autistic people have low menopause knowledge and awareness, including awareness of treatment;

b)     Autistic people may struggle to identify they are in menopause;

c)      Autistic people face barriers to healthcare;


It thus seems likely that they might be less likely to seek and receive HRT.


Participants in our research expressed uncertainty and anxiety about HRT, and referred to health scares and misinformation about it. Example responses when asked whether they took it:



d)    Autistic people are more likely to have other intersectional identities which are associated with unequal access to menopause care and support.


Autistic people are significantly more likely to be non-binary or transgender (Warrier et al., 2020).


For those who are non-binary, intersex, or trans men, menopause can be threatening, traumatic and distressing (Glyde, 2021; van Trotsenburg et al., 2023). These difficult emotions are exacerbated by the barriers that transgender people face in healthcare (Heng et al. 2018): for instance, stigmatizing beliefs and lack of knowledge in healthcare providers.


Moreover, transgender and queer people are not represented in public discourse or most information or resources related to menopause (see, for e.g., queermenopause.com).


Individuals who are autistic and transgender suffer from the stigma of these two marginalized identities, such that they often have poorer mental health than individuals who are just autistic, or just transgender (Strang et al., 2021).  These two stigmatised identities can interact: for instance, autistic people often find that their expressions of gender dysphoria are disbelieved or dismissed as ‘confusion’ or ‘obsession’ due to their autism (Strang et al., 2018).  Autistic transgender people have poorer healthcare experiences (Bruce et al., 2023).




  1. What barriers exist in the treatment and diagnosis of gynaecological or urogynaecological conditions?


For autistic people, these include:


a)    General barriers to all healthcare access (Doherty et al., 2022; Raymaker et al., 2017)



b)    Poor understanding of adult autism in professionals



c)     Infantilisation of autistic bodies by professionals



d)    Low reproductive and sexual health literacy in autistic people




August 2023