The Double Empathy Reader

Open Access

Chapter 26:

Autistic, Hysteric: Inequity in Health Care for Autistic People Assigned Female at Birth in the United Kingdom
Gemma L. Williams, Rebecca Ellis, Harriet Axbey and Aimee Grant

The authors have made the following work accessible to the public by applying a Creative Commons (CC BY-NC-ND) license to the final, published chapter. This enables open access, meaning the research is freely available to anyone without needing to pay or have institutional access.

Abstract

When the Double Empathy Problem affects communication with medical professionals, the consequences can be dire. This is evidenced by the significantly reduced life expectancy of Autistic people compared to our non-Autistic peers and the far poorer physical and mental health we experience on almost every metric. At the same time, people assigned female at birth (AFAB)38 are known to experience a ‘gender health gap’ in modern medicine. We consider this to be at least in part due to centuries of medical misogyny, where much of what ailed women was attributed to ‘hysteria’ and their reproductive organs. These days, women in the UK have longer life expectancies than men but spend more of their life in poor health or chronic pain with conditions left undiagnosed for longer. This is particularly pronounced within the specialisms of gynaecological and reproductive care. For those

As a collective of authors, we have a transinclusive stance. This is reflected in our use of transinclusive terminology throughout this chapter. However, when referencing findings or facts we will use the language of original studies to ensure accuracy in our reporting.

from racialized and additionally minoritized groups, the health gap is even greater. In this chapter we – a collective of Autistic AFAB researchers39 from the UK – explore how the Double Empathy Problem intersects with structural misogyny within health care, leading to dangerously inadequate services for Autistic AFAB people and an urgent need for more research.

Introduction

Communication differences have had a central role in descriptions of Autism since its earliest conceptions. Historically, Autistic people have been thought of as having inherent ‘impairments’ when it comes to social communication, in particular in terms of their ability to intuit or infer the mental states and emotions of others: known as having a ‘theory of mind’ (Chown, 2017). However, research now supports what Autistic advocates have been saying for some time: that the issue is better described as a communication incompatibility, or a ‘Double Empathy Problem’ (Milton, 2012; Milton et al., 2018). We now have extensive evidence, for example, that non-Autistic people experience difficulty in inferring the emotional and mental states of Autistic people (Brewer et al., 2016; Edey et al., 2016; Heasman & Gillespie, 2017; Hubbard et al., 2017; Sheppard et al., 2016). Conversely, Autistic people often experience high levels of mutual understanding and rapport when interacting with other Autistic individuals (Crompton et al., 2019a, 2019b, 2020; Heasman & Gillespie, 2019; Morrison et al., 2019; Williams et al., 2021). Likewise, it isn’t true (as has been suggested by some Autism theorists) that all Autistic people struggle to empathize – in fact, many are hyperempathic (Kimber et al., 2023) – but more that divergent ways of experiencing and processing the world cause gaps in mutual understanding between neurotypes that take extra efforts to overcome (Williams, 2021).

The Double Empathy Problem can occur in all areas of life, but when it impacts communication between Autistic people and their medical care providers, the consequences can be dire (Doherty et al., 2022; Shaw et al., 2023; Williams et al., 2022). For example,

life expectancy for Autistic people is significantly reduced, with Autistic individuals dying 16–30 years younger compared to their non-Autistic peers (Doherty et al., 2022; Hirvikoski et al, 2016). In addition, Autistic people’s physical and mental health is far poorer, with Autistic people more likely to die from almost all medical conditions (Hirvikoski et al., 2016). Serious medical conditions, such as diabetes and hypertension, are far more prevalent among Autistic people (Doherty et al., 2022), as are mental health conditions such as depression (Buck et al., 2014) and anxiety (Uljarevic´ et al., 2020), along with increased instances of both self-injurious behaviours (Hedley et al., 2018a) and suicidal ideation (Hedley et al., 2018b). In addition to systemic and social pressures, such as stigma and minority stress (Botha & Frost, 2018), affecting the well-being of Autistic

We are a mix of cisfemale and gender nonconforming AFAB individuals.

people, practical issues, such as unmet access requirements to primary care services, communication barriers between Autistic patients and clinicians, and symptoms not being believed or picked up soon enough – often on account of atypical ways of experiencing and expressing pain – contribute to poorer health care experiences and uptake (Doherty et al., 2022; Shaw et al., 2023; Williams et al., 2022). Difficulties in patient–doctor communication are long acknowledged. When combined with the challenges with mutual understanding that often trouble cross-neurotype communication (the Double Empathy Problem), it is plausible that the negative effects on health care experiences and outcomes will be magnified for Autistic health care users, a phenomenon referred to by Shaw et al. (2023) as the ‘triple empathy problem’.

In the following few pages, we take a broader look at health care provision for women and people with wombs in the UK and explore how the Double Empathy Problem intersects with structural misogyny within health care. We draw on the history of women cast as ‘hysterics’ on account of their ‘wandering wombs’, and the pervasive emphasis on ‘sanitation’ and ‘hygiene’ in the patriarchal-capitalist approach to menstrual and vaginal care. We ask the question: how does the Double Empathy Problem intersect with a larger, systemic, cisheteronormative, misogynistic and racist ableism?

The gender health gap

All AFAB people – both neurodivergent and neurotypical – are known to experience a ‘gender health gap’ in modern, Western medicine (Department of Health and Social Care, 2022). Women in the UK have longer life expectancies than men but spend more of their life in poor health or chronic pain with conditions left undiagnosed for longer (Department of Health and Social Care, 2022). One study, for example, found that women have a striking 50% higher chance of receiving a wrong diagnosis following a heart attack than men (Wu et al., 2018). Another study highlights the markedly poorer care that women with dementia in UK receive compared to men with the same condition (Cooper et al., 2017). In one large-scale review of over 700 diseases from diabetes to cancer, women were found to be receiving diagnoses on average four years later than men (Westergaard et al., 2019).

Troublingly, but unsurprisingly, in a public survey called to inform the 2022 Women’s Health Strategy for England Policy Paper (Department of Health and Social Care, 2022), 84% of over 100,000 women responding felt that their health concerns had not been listened to by health care professionals. Of these, many reported dismissive attitudes toward their reports of serious pain, particularly in relation to gynaecological pain. This fits into a wider picture of inequity toward gynaecological and reproductive health care in the UK. For example, endometriosis is a painful and debilitating disease affecting around 10% of people of reproductive age with wombs, yet the current wait time for an initial diagnosis is around 8 years (All-Party Parliamentary Group on Endometriosis, 2020). Alongside this, polycystic ovary syndrome (PCOS) impacts 5–10% of women of reproductive age, but the existing diagnostic criteria are not evidence-based, relying instead on the weaker evidence of clinician consensus, due to lack of research in this area (Rao & Bhide, 2020).

Autism and the gender health gap

For Autistic AFAB people, this gender gap in health care compounds with the Double Empathy Problem. Autistic people often have highly divergent sensory and bodily perceptual experiences, impacting both on how pain is and isn’t perceived and on interoception – the internal sense responsible for registering internal bodily states such as hunger or temperature (Mason et al., 2019, Williams et al., 2022). This likely has a bearing on how Autistic people experience and report ill health and yet, thus far, very few research efforts have been dedicated to exploring this.

More recently, Talcer and colleagues (2023) have highlighted the additional sensory challenges that Autistic mothers often experience during the perinatal period that frequently go unsupported, impacting their mothering, social lives, work lives, mental health and energy levels. In a systematic review, led by one of our co-author group (Aimee Grant), of qualitative research into Autistic women’s views and experiences of infant feeding, the researcher team found that only eight peer-reviewed papers had been published covering this topic (Grant et al., 2022).

In another systematic review (by this present co-authoring team, led by Rebecca Ellis), looking at Autistic people with wombs’ experiences of menstruation (Ellis et al., 2025), we found a similarly sparse number of sources (N=12) on the topic. Very few of these featured the Autistic voice, centring parents’ experiences instead. In terms of Autistic people’s experiences of maternity care, this is still a new area being explored. Research so far has highlighted that Autistic birthing people feel that they were not listened to and were treated as a problem by staff (Grant et al., 2025). Autistic AFAB people report high levels of breastfeeding40 motivation and satisfaction (Grant et al., 2023a) – despite significant feeding-related sensory issues (Grant et al., 2022) – but lower satisfaction with infant feeding support compared to non-Autistic AFAB people (Hampton et al., 2023).

Also important to note is that just as not all women have wombs, not all people who have wombs – and need gynaecological care – are women. Some increased correlation has been observed between being Autistic and being trans or non-binary (e.g., see George and Stokes, 2018) although, as Kourti (2021, p. 17) highlights, this relationship has been researched from a perspective that ‘[has] been notably cisgender and neurotypical, starting with the assumption that being neurotypical and cisgender are, and should be, desirable states’. Regardless, it probably is the case that there are a higher number of Autistic trans and non-binary people.

We use the term breastfeeding here, but we acknowledge and respect the fact that others may refer to this as chestfeeding or bodyfeeding.

Trans people in the general population not only already face substantial barriers in accessing gender-affirming treatment in the UK, but also encounter additional obstacles (including transphobic discrimination from staff) when seeking non-gender-related health care within the National Health Service (NHS) (London Assembly Health Committee, 2022). In a recent qualitative systematic review (Sbragia & Vottero, 2020) of the experiences of transgender men seeking gynaecological and reproductive health care, the authors found that trans men experience specific additional barriers in accessing health care, including a binary-gendered health care system that doesn’t easily admit them.

This issue was unfortunately exemplified in a recent article in a British newspaper (Chantler-Hicks, 2023) reporting on Conservative Party proposals ‘aimed at restoring ‘common sense’ to the NHS’ by banning trans women from female hospital wards. For the many Autistic trans and non-binary people that exist we can only imagine these health care gaps will be wider. And while some others (e.g., Strauss et al., 2021) have also surmised that the systemic barriers that trans and Autistic individuals independently face in accessing health care might compound for those who are both trans and Autistic, investigation into this is, thus far, absent from the literature.

A brief history of medical misogyny

You see, he does not believe I am sick! And what can one do?

If a physician of high standing, and one’s own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression – a slight hysterical tendency – what is one to do?

(Charlotte in Perkins Gilman, 1892/1995)

There is an undeniable thread of misogyny within modern medicine, that runs its roots through a history where women were cast as ‘hysterics’41 (Agarwal, 2022) on account of their ‘wandering wombs’ (Cleghorn, 2022). At the dawn of modern, Western medicine, the ancient Greeks imagined the womb (or, uterus) as a troublesome ‘animal within an animal’ that was able to move around the body at will, causing all kinds of ills which male medical authority was tasked with controlling:

Medical writers of ancient Greece and Rome held many different views on the wandering womb. But the uterus, as the dominant force behind so many illnesses, diseases, and the root of the word hysteric, of course, being hyster-, deriving from ὑστέρᾱ, the ancient Greek word for (you guessed it!) womb.

Symptoms of women, was woven into them all. Women were under the dominion of male authority, and medical discourse legitimized this by making women’s bodies subordinate to the whims of the very organ that defined their social purpose. (Cleghorn, 2022, p. 15).

Treatment for the various pathologies attributed to migrating uteruses was – perhaps unsurprisingly – a strong prescription for early marriage, plentiful marital sex and lots of babies (Cleghorn, 2022).

During Medieval and Renaissance times in Europe (c. 1066–1603), the view persisted that women’s ‘emotional states and nervous disposition’ (in turn emanating from the unruly uterus) were usually the sources of their physical ailments (Agarwal, 2022, p. 118). Again, remedies included recommendations of participation in orgies and sex with young men (Agarwal, 2022). Not only was there misinformation and obfuscation around women’s bodies and gynaecological health, but also a fear of women possessing knowledge about how to support other women, demonstrated in the fifteenth-century witch-hunter’s guidebook, The Malleus Maleficarum, which declared that ‘[n]o one does more harm to the Catholic Church than midwives’ (Henricus Institoris & Jacobus Sprenger, 2006, p. 164).

Indeed, in the seminal (or: ‘ovoid’?) second-wave feminist radical pamphlet ‘Witches, Midwives and Nurses’, authors Ehrenreich and English (1974) map the origins of patriarchal dominance over modern health care and draw parallels with the persecution of (usually) women denounced as ‘witches’, highlighting how (male) physicians benefitted from the suppression of (female, lay) competitors.

In the introduction to a revised, second edition (Ehrenreich & English, 2010), they provide a reflective context for the original publication. At the time of writing (in the seventies), the authors describe a status quo whereby:

…as healthcare professionals, women were largely confined to subordinate roles as nurses and aides. As consumers of care, we found ourselves subject to both insensitive and hazardous treatment: unnecessary hysterectomies, over medicalised- childbirth, insufficiently tested contraceptives, involuntary sterilizations, and the almost universal condescension of male doctors. (Ehrenreich & English, 2010, p. 8)

One further way in which women, as consumers of care, experienced dangerous treatments founded in misogynistic thinking was during the burgeoning contraceptive movement in the 1920s and 1930s. To advertise birth control products for private sale was illegal, but manufacturers of suppositories, foaming tablets, vaginal jellies and liquids, and antiseptic douches got around the issue by marketing them euphemistically as ‘feminine hygiene’

products (Tone, 2002). The antiseptic douche soared in popularity in the 1940s, no doubt influenced by large adverts in newspapers and magazines emphasizing how grateful a woman’s husband will be that she was keeping herself ‘fresh’. However:

[s]cores of douching preparations, though advertised as modern medical miracles, contained nothing more than water, cosmetic plant extracts, and table salt. On the other hand, many others, including the most popular brand, Lysol disinfectant, were soap solutions containing cresol (a constituent of crude carbolic acid, a distillate of coal and wood), which, when used in too high a concentration, caused severe inflammation, burning, and even death. The Lysol douche did not prevent pregnancy… (Tone, 2002, p. 170)42

Thankfully, Lysol products are no longer for sale. However, present day menstrual products retain euphemistic names, such as ‘sanitary towels’ (which carry the tacit implication that menstruation is ‘unsanitary’).

There also remains a flourishing female sexual and reproductive wellness industry (valued globally at around US$4.5trillion in 2018: Patton et al., 2022) which promotes non-medical remedies to AFAB people. Without the benefit of regulation, products which cause definite harm to AFAB people’s bodies continued to be marketed to them. One contemporary example might be the Goop ‘jade vaginal egg’, which is now advertised as harnessing ‘the power of energy work, crystal healing, and a Kegel-like physical practice’ (Goop Wellness, 2023) for the benefit of vaginal health.

Originally, however, it was advertised as a tool to ‘balance hormones, regulate menstrual cycles, prevent uterine prolapse, and increase bladder control’ (Patton et al., 2022, p. 19) until Goop was fined by the California Food, Drug and Medical Device Task Force for false advertising and medical risk (Patton et al., 2022).

AFAB people of all backgrounds experience medical misogyny and barriers to healthy reproductive care. However, it is AFAB people with additional marginalizations that often experience even poorer care and harm by neglect of their needs. Reproductive justice is

a rights-based, intersectional feminist activist movement and framework, founded in the 1990s by Black women in the US with the aim of redressing this imbalance and injustice (Onwuachi-Saunders et al., 2019). The reproductive justice movement continues to advocate for equitable access to reproductive and sexual health care for all AFAB people, but particularly so for Black AFAB people who still endure racialized oppression within the health care sector.

While it may not have had had success as a method of birth control, Lysol was an excellent cleaning solution for the garbage pail and toilet bowl.

Medical misogynoir and systemic racism in health care

Misogynoir is the term given to the particular blend of anti-Black racism and misogyny that is uniquely enacted against Black AFAB people, taking the form of ‘stereotypes, violence [and] disregard for bodily integrity, and physical or emotional suffering’ (Edmonds etal., 2023, p. 16).

In the UK, AFAB people who are Black face increased health disparities compared to white AFAB people. For example, in a recent review of maternal, newborn and infant clinical outcomes in the UK, Black women were, shockingly, found to be nearly four times more likely to die than white women (34 women per 100,000 giving birth [MBRRACE- UK, 2022]). While Black AFAB people are uniquely victimized by medical misogynoir,

AFAB people who are Brown or from other minoritized ethnic backgrounds also contend with racism within the health care system that often intersects with medical misogyny. For example, in the same MBRRACE-UK (2022) study, Asian women were found to be nearly twice as likely to die than white women (16 women per 100,000 giving birth).

Systemic racism within gynaecological (and obstetric) care can be traced back to the discipline’s origin story. Dr J. M. Sims, the ‘father of gynaecology’, developed his craft through regular experimentation on enslaved Black women: operating, for example, on one young woman called Anarcha – in a time before the use of anaesthesia was commonplace – 29 times before eventually resolving how to fix a vaginal fistula (Rol, 2018). In addition, as Roberts (2014, p. 6) reflects in the introduction to her book Killing the Black Body, ‘regulating Black women’s reproductive decisions has been a central aspect of racial oppression in America’. On the one hand, Black women’s reproduction and childbearing became ‘central to the economic enterprise of chattel slavery’ (Edmonds et al., 2023, p.16) following a law change in the 1600s ensuring that children born of enslaved Black women be born into slavery (no matter who the father was).

The impact of Black enslaved women being required to ‘wet nurse’ white infants continues to impact on Black women’s breastfeeding today (Freeman, 2017). On the other hand, up until as late as the 1970s in the US, Black, Hispanic and Indigenous women (along with, to a lesser extent, poor white women and women with so-called ‘cognitive impairments’) were routinely sterilized without consent:

They were told their tubes would be “tied,” implying an easy untying, or they were not told at all that a hysterectomy or tubal ligation had been performed. The secret procedure was so common, it was euphemistically referred to as a “Mississippi appendectomy.” Fannie Lou Hamer, a voters’ rights and Civil Rights icon, fell victim herself to such a hysterectomy at the hands of a [w]hite physician in 1951. (Rol, 2018, np)

In addition to the systemic barriers it creates, misogynoir shows up in health care contexts in many ways, including as judgemental stereotypes (e.g., that Black women are ‘aggressive’, ‘stupid’ or ‘promiscuous’ [Edmonds et al., 2023, p. 16]), and clinically dangerous false beliefs about biological differences, including that Black people experience less pain (Hoffman et al., 2016). For Black Autistic AFAB people who may already experience atypical sensory processing of their pain and internal states, there is an even greater risk of receiving inadequate or even harmful care.

This is complicated further by the fact that Black and Brown people in the UK face significant biases within the Autism diagnostic system and remain under-included in Autism research (Begeer et al., 2009; Cascio et al., 2020). While a formal Autism diagnosis does not – in any way – guarantee accommodative health care (although, legally, it should according the UK’s The Equality Act, 2010 and The Autism Act, 2009), the absence of one leaves even greater room for misinterpretations of seemingly atypical behaviour that, in the case of Black Autistic AFAB people, may be incorrectly interpreted as aggression (Williams et al., 2022).

The Double Empathy Problem for autistic people assigned female at birth seeking health care

Breakdowns in cross-neurotype understanding are borne out again and again in Autistic people’s descriptions of their health care experiences. In one online survey of UK Autistic birthing parents’ experiences of infant feeding (Grant et al., 2023a), 82 (of a total of 193; only three-quarters of whom had received support) participants reported negative interactions with at least one health professional, describing services as ‘absent’, ‘lacking’, ‘poor’, ‘rubbish’, ‘outdated’ and ‘terrible and unhelpful’, and – tellingly – staff as ‘useless’ and ‘judgemental and […]unable to understand Autistic communication’ (Grant et al., 2023a, p. 11). In a further online survey of 200 Autistic adults, investigating their experiences of the treatment and support they received for mental health problems (Camm-Crosbie et al., 2019), 89 participants reported negative experiences.

Many described the practitioners they had seen as having a ‘very poor knowledge of autism’ and felt professionals needed to be ‘better trained in autism’ to ‘realise it may not always be possible to accurately read a person with autism’ (Camm-Crosbie et al., 2019, p. 1435).

It is not, it should also be noted, just Autistic people themselves who have noticed these barriers to mutual understanding. In a recent systematic review of health care professionals’ knowledge, self-efficacy and attitudes toward working with Autistic people (Corden et al., 2022), the researchers found that health care professionals themselves reported poor working knowledge of Autism and low confidence in working effectively with Autistic patients.

Despite governmental reviews and policy commitments (e.g., Department of Health and Social Care, 2019; Department of Health and Social Care and Department for Education, 2021; NHS England, 2019; The Health and Care Act, 2022) to address these service failures and communication breakdowns, little impact has been felt within day-to-day service provision.

In England, a promising new Oliver McGowan Mandatory Training in learning disability and Autism was introduced in 2022 with the ambition to increase ‘understanding of people’s needs, resulting in better services and improved health and wellbeing’ (Health Education England, 2022, p. 1). While this has in some ways been a laudable effort, its impact on services is as yet unclear and it has met with some criticism relating to the quality of training packages and theoretical content (National Development Team for Inclusion, 2022). In 2022, a new National Autism Trainer Programme for health care and education professionals has also begun to roll out, which was co-produced by the Anna Freud centre and Autistic-led organization, AT Autism, and so far seems promising.

At a more grassroots level, some ground has been covered by various collectives of Autistic-activist scholars and medics (including Autistic Doctors International)43 and some neurodiversity-affirming mixed neurotype groups in the creation of Autistic-led toolkits designed to support practitioners to provide higher-quality care for their Autistic patients. These include the AASPIRE Healthcare toolkit (Nicolaidis et al., 2016), More Than Words (Williams et al., 2022), It’s Not Rocket Science (National Development Team for Inclusion, 2021) and most recently the SPACE Framework44 (Doherty et al. 2023) which highlights the importance for practitioners to consider sensory needs, provide predictability and acceptance, adapt their communication and offer empathy. Ensuring these toolkits reach practitioners so as to be able to influence service provision, however, is not always easy. Finally, at present, there remains a dearth of research investigating the specific health experiences and health care needs of Autistic AFAB people. As such, in addition to the double empathy gap that Autistic individuals can experience with their health care providers, there is a larger, systemic empathy gap that shapes the kind of care that is (and more often, isn’t) available. This should be addressed with urgency.

Absence of data

In order to understand problems, we need to be able to measure them. One significant issue when trying to determine the effect of the Double Empathy Problem on Autistic AFAB people’s health care needs is the dearth of data currently available. In the influential MBRRACE-UK (2020) report, for example, which is an important indicator of misogynoir, no data relating to disability of any kind was included among the sociodemographic characteristics collected of women who died. As such, we cannot establish how many Autistic AFAB people may have died in childbirth in the UK. It is plausible, however, to assume this number may be not insignificant, following one Swedish cohort study which found that Autistic mothers were more likely to have preterm births and adverse pregnancy outcomes (Sundelin et al., 2018, p. 1816), and analysis of the SAIL databank identified

https://autisticdoctorsinternational.com/

SPACE = Sensory needs, Predictability, Acceptance, Communication and Empathy.

that 0.79% (approximately 1 in 125) births in Wales, UK in 2020 were to those who had a diagnosis of Autism listed on their health or education records (personal correspondence with Professor Sinead Brophy).

Aggravating the issue of lack of data are the poor rates of Autism diagnoses for AFAB people (Lockwood Estrin et al., 2021). Figures suggest that in some parts of the UK, around three-quarters of Autistic people are undiagnosed (Grant et al., 2023b) while many others sit on waiting lists for assessment that last years (Westminster Commission on Autism, 2021), obscuring them from view. There are also a number of Autistic people who refrain from disclosing their diagnosis to health care professionals due to fear of perceived stigma or worse treatment (Doherty et al., 2021).

Finally, research has found that even when Autistic individuals do have a recorded Autism diagnosis, doctors in both primary care and hospitals often underestimate the number of Autistic patients they have (Doherty et al., 2021; Zerbo et al, 2015). And, while Autism health passports (AHPs) were introduced in the UK, and recommended in National Institute for Health and Care Excellence (NICE) clinical guidance, with the aim of describing and thus improving health care accessibility needs, a recent review found that there was no evidence of any AHP introduced anywhere around the world fulfilling its aims (Ellis etal., 2023).

A material risk to Autistic people assigned female at birth

It is now understood that Autistic people face serious barriers to accessing adequate health care; one recent study found that of the 507 Autistic people asked, 80% reported challenges visiting a general practitioner (GP) in any circumstance and 56% described having difficulties communicating with their doctors (Doherty et al., 2022). Raymaker and colleagues (2017, p. 7) also found that ‘autistic adults experience many similar barriers to healthcare access as people with other types of disabilities; however, they experience them at

higher rates, and also experience unique autism-specific barriers that may be less likely to be addressed in modern healthcare systems’.

We currently lack sufficient data about Autistic AFAB people’s experiences of health and health care to make definitive conclusions. However, we can infer from the general population’s gender health gap and from the little research that does exist that there are likely to be additional challenges for Autistic AFAB people when trying to access health care. What we do already know is that when services fail Autistic people at times when they need support the most, this often triggers a cycle of involvement with poor-fit mental health services (Camm-Crosbie et al., 2019) that can, ultimately, lead to

escalating crisis situations resulting in restraint, seclusion and long-term segregation (Care Quality Commission, 2020). For example, in her book, Unbroken, Alexis Quinn (2018, p. 36) describes being ‘incarcerated in the NHS’ postnatally, following a mental health admission through her local crisis team where she experienced dehumanizing and harmful treatment and wasn’t permitted to keep her baby with her.

The case of another young Autistic woman, Bethany, came to prominence recently in the news when she was finally released from living all her teenage years in solitary confinement under a Mental Health Act detainment, following the long-term advocacy of her father and Autistic advocates and activists (Joshi, 2020)45. Yet, Alexis and Bethany’s stories are not rarities. An NHS England (2020) report found that the number of Autistic people detained long-term in inpatient mental health hospitals in the UK rose from 800 in 2015 to 935 in 2020, despite the national effort to ‘Transform Care’ (NHS England, 2017) and support previously detained Autistic people to live in the community.

This dangerously poor care during times of mental distress has potentially even more bearing on the lives of Autistic AFAB people, given the role of the menstrual cycle hormones on mental health. Some studies have begun to find that Autistic AFAB people are more likely to experience reproductive hormone-related complications than non-Autistic AFAB people. For example, Lever and Geurts (2016) found that almost 21% of Autistic women – compared with 3% of non-Autistic women – suffered from premenstrual dysphoric disorder (PMDD): a severe form of premenstrual syndrome during the luteal phase of the menstrual cycle that often involves extreme mood swings and suicidal ideation. In another study, researchers found that Autistic women experience higher levels of menopausal symptoms than non-Autistic women, often associated with higher rates of depression and an increase in Autistic traits (Groenman et al., 2022)46. Furthermore, Moseley and colleagues (2021) also looked at Autistic women’s experiences in menopause and found a deterioration in quality of life during this life stage, troubled by typical menopausal challenges in addition to an increased propensity to experience extreme emotional lability and increased frequency of meltdowns, concluding that there are significant ‘healthcare access problems and unmet needs for autistic women at midlife’ (Moseley et al., 2021, p. 710). Taken in the context that Autistic people live significantly shorter lives than non-Autistic people and die by suicide far more frequently (Hirvikoski et al, 2016), the compounded care gap that Autistic AFAB people face by virtue of experiencing both increased and atypical reproductive hormonal complications, and the Double Empathy Problem within health care settings, is especially alarming. Moreover, none of these studies report on the race or ethnicity of participants, but it is likely that the vast majority of participants were white, as in common in Autism research (Jones et al., 2020).

For Black, Brown, Asian and other ethnically minoritized Autistic AFAB people the already unacceptable care gap is almost certainly even wider.

Thankfully, Bethany now lives comfortably at home with her family, enjoying ‘going for walks, caring for her pets and experimenting with new hairstyles and clothes’ (National Development Team for Inclusion, 2021).

Of course, an apparent increase in Autistic traits may well mean that in these instances Autistic women are masking less, or finding it harder to mask.

Conclusion

As things currently stand, anyone with a minoritized identity – AFAB people, Black, Brown and other ethnically minoritized people, trans people, disabled people, neurodivergent people, people with lower economic status, LGBTQ+ people, ex-offenders, refugees, people with larger body sizes, insecurely housed people, etc. – faces biases in and barriers to medical care that keep them in pain and reduce their lifespan (Robards et al., 2018).

The more intersecting identities (Crenshaw, 1989) an individual has, the greater the compounded impact on their access to non-harmful health care. For those who are Autistic, additional communication barriers in the form of the Double Empathy Problem complicate this even further.

Finally, within the SPACE framework (Doherty et al., 2023) is E for empathy: the notion also at the heart of the Double Empathy Problem. The health care system in the UK, under years of Conservative austerity cuts and within an already historically patriarchal system, isn’t fit for purpose for many, but especially not for Autistic people (Grant et al., 2023b).

It is often the extra efforts – and the empathy and care – of health care professionals that keep the crumbling system running. Greater diligence in routinely offering meaningful and person-centred reasonable adjustments (Doherty et al., 2021, 2023; Williams et al., 2022) when providing health care to Autistic AFAB people will make a difference, as will an empathic and open-minded approach toward those who are different and practitioner training in Autism and co-occurring health conditions. Research into the health care needs of Autistic AFAB people is also clearly and urgently indicated. However, it is the health care system itself – shaped by the funding and policy whims of the government – that needs to change more than anything in order to ensure a service that supports Autistic AFAB people to thrive.

References

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