Abstract
Autistic girls and women experience more mental health difficulties and poorer well-being than their non-autistic peers. Little emphasis has been placed on the perspectives of the girls and women within the literature. This review aims to provide an overview of the factors that impact autistic females’ emotional and social well-being and mental health, as described in self-report qualitative studies. The protocol for the present review was pre-registered on PROSPERO (CRD42020184983), and this article follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycInfo, Academic Search Complete and MEDLINE were systematically searched using a pre-defined search string. This yielded 877 unique records, which were systematically screened by two reviewers, resulting in 52 eligible studies. Structured data extraction and quality appraisal were completed. The present review presents the perspectives of 973 autistic females aged 13–70+. Thematic synthesis identified three themes and nine subthemes. Our findings suggest that autistic girls’ and women’s experiences can be conceptualised within a social model, where biological and psychological factors (‘The Autistic Neurotype’) are experienced through the lens of social factors (‘The Neurotypical World’ and ‘Stigma’), together shaping well-being and mental health outcomes.
Lay abstract
Difficulties with mental health and low levels of well-being are more common among autistic girls and women than non-autistic people, but we do not fully understand why. Research does not focus enough on what autistic girls and women could tell us about this. This review aims to summarise the studies where autistic girls and women explain things that affect their mental health and well-being to help us understand how to prevent these difficulties from developing. Three research databases were searched to find possibly relevant studies. There were 877 studies found, which two researchers screened according to particular criteria. They found 52 studies that could be included in this review. One researcher evaluated the quality of these studies and extracted the key information from them. This review summarises the views of 973 autistic girls and women aged between 13 and 70+. The findings from the 52 studies were analysed, and we found many factors that affect the mental health and well-being of autistic girls and women. These factors fall into two categories: (1) difficulties living in a world not designed for autistic people and (2) the impact of stigma due to being autistic.
Introduction
Autism has traditionally been viewed as a disorder, understood through the lens of the medical model, identifying ‘deficits’ within autistic people (American Psychiatric Association [APA], 2013). However, in recent years, a re-framing of autism as a type of neurodivergence with a range of traits and characteristics that are different but not inferior to neurotypical ways of being has become more widely accepted (Happé & Frith, 2020). Within the neurodiversity framework, autism can be defined as a neurotype characterised by differences compared to the non-autistic population in various areas, such as social approach, cognitive style and sensory processing (Kapp, 2020).
The eventual development of ‘autism’ as the diagnostic concept we know today can be traced back to the work of Leo Kanner (1943) and Hans Asperger (1944), who both based their observations largely on young boys. Unfortunately, prior work by Russian psychiatrist Grunya Efimovna Sukhareva, who described autistic girls in the 1920s, was overlooked until recently (Sher & Gibson, 2021). As such, a bias towards identifying and understanding autistic males existed from the very outset. Later, theories such as ‘the extreme male brain’ (Baron-Cohen, 2002) further supported the belief that autism was a ‘male’ experience. As a result, to this day, many autistic girls and women are not identified or receive a diagnosis later in life after spending many years confused about why they do not feel they fit in (Lai & Baron-Cohen, 2015; Leedham et al., 2020; Rivet & Matson, 2011). As well as regular missed diagnoses, other difficulties that autistic girls and women face are identified in the literature, such as more interpersonal conflict within friendships (Sedgewick et al., 2019), increased vulnerability to sexual victimisation (Pecora et al., 2020) and distress related to efforts to suppress their natural responses in favour of a more ‘neurotypical’ presentation in order to avoid stigmatisation (i.e. ‘masking’; Cook et al., 2021b; Pearson & Rose, 2021b). Perhaps most alarmingly, autistic girls and women experience mental health difficulties, such as anxiety disorders and depressive disorders, at a disproportionate rate compared to their non-autistic peers (Angell et al., 2021; Lai et al., 2019). Furthermore, they report higher levels of depression and suicidality than autistic males (Cassidy et al., 2014; Hirvikoski et al., 2020; Lai et al., 2019; Oswald et al., 2016) and may have higher levels of anxiety (Angell et al., 2021; Sedgewick et al., 2021; Uljarević et al., 2020). Autistic women are five times more likely to attempt suicide than their non-autistic counterparts and more than twice as likely as autistic males. Specifically, it was estimated that almost 14% of autistic women without a co-occurring intellectual disability (ID) had attempted suicide. In comparison, this figure increased to over 20% for women who also have attention-deficit hyperactivity disorder (ADHD; Hirvikoski et al., 2020). In addition to experiencing mental health difficulties, autistic women report lower levels of positive psychological well-being and quality of life than their non-autistic counterparts (Cai et al., 2020; Mason et al., 2018). A range of bio-psycho-social factors have been linked to these poorer mental health and well-being outcomes for autistic adults, including adverse sensory experiences (Hwang et al., 2020), predictive processing styles (Bervoets et al., 2021; Stark et al., 2021), alexithymia (Costa et al., 2020; Morie et al., 2019), masking (Cook et al., 2021b), late diagnosis (Oredipe et al., 2022) and stigma (Botha & Frost, 2020). The issues of late diagnosis and masking may be particularly pertinent for autistic females (Hull et al., 2020; Posserud et al., 2021). However, there is not yet a comprehensive understanding of autistic females’ perspectives on the range of factors that impact their mental health and well-being.
In order to truly understand the well-being of autistic people, we must understand what well-being means to autistic people. Milton and Sims (2016) explored the meaning of well-being for autistic adults, with a particular emphasis on the social aspects of well-being. They identified key themes of having personal needs met (including minimising stress), societal ‘othering’, connecting with others and managing relationships. As such, alongside emotional well-being, social well-being (constructed from an autistic viewpoint) is a key element of autistic well-being. In neurotypical contexts, emotional well-being can be described as the increased experience of positive emotions, such as joy, relaxation or vigour, and fewer experiences of negative emotional states, such as sadness, worry or lethargy (Seligman, 2011). In addition, the autistic perspective emphasises the importance of minimising stress (Milton and Sims, 2016). For neurotypical people, social well-being can be defined as receiving adequate support from others, feeling loved and valued and feeling satisfied with one’s personal relationships (Seligman, 2011). The autistic perspective also includes the experience of social inclusion (vs social exclusion or ‘othering’) as a key element of their social well-being (Milton and Sims, 2016). Given that the concept of autistic well-being has not yet been conclusively defined, the present review will employ definitions that use a combination of standard definitions of emotional and social well-being and the description of autistic well-being, as outlined by Milton and Sims (2016).
Aims and objectives of the present review
The importance of centring the autistic voice in research is increasingly acknowledged by researchers in the field (Fletcher-Watson et al., 2019; Nicolaidis et al., 2011). Alongside this, there has been an increase in the number of qualitative studies involving autistic girls and women, resulting in a large breadth of information regarding female autistic experiences. Therefore, this is an opportune time to use this available data to build an understanding of the mental health and well-being of autistic females. As such, the present review aims to understand the determinants of mental health, emotional well-being and social well-being in autistic girls and women, from the first-person perspective. This will be achieved by synthesising qualitative studies on the lived experiences of autistic girls and women, focusing on the factors that have impacted their mental health, emotional well-being or social well-being. It is hoped that by synthesising the reports of autistic adolescent girls and women, the present review will provide an overview of the perspectives of autistic females on the factors that cause poorer well-being and mental health difficulties, helping us to understand how to prevent these difficulties from occurring in the first place. It will also offer a platform for future research to develop that is in line with the perspectives of these girls and women.
The present review primarily aimed to answer the following research question: What are the self-reported determinants of mental health, emotional well-being and social well-being in autistic adolescent girls and women?
Methods
A protocol for this study was pre-registered on PROSPERO (CRD42020184983). The current article adheres to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Page et al., 2021).
Data sources, search strategy and eligibility criteria
Three electronic databases (PsycINFO, Academic Search Complete and MEDLINE) were searched using a pre-planned search strategy developed using the SPIDER search strategy tool, which culminated in the search terms in Table 1. Preliminary searches aided the development of the final search terms. With regard to the Phenomena of Interest search terms, this included terms related to mental health, emotional well-being and social well-being, from both general and autism-specific perspectives. Some terms relevant to the Phenomena of Interest, such as ‘eating’ and ‘sleep’, returned very large numbers of irrelevant studies and were thus excluded from the search string.
Search strategy for systematic review.
The initial searches were conducted between 3 and 17 July 2020. Seven hundred and eighty records were identified, reduced to 622 when duplicates were removed. The searches were run again on 2 April 2021 to identify any new papers published since July 2020, which yielded another 106 studies for screening. The search was run for a final time on 30 September 2022, which yielded an additional 149 studies for screening.
Eligibility criteria can be categorised into three of the relevant elements as outlined by PRISMA (participants, study design and concepts). An additional category of criteria relating to the manuscript was added (see Table 2). Concepts of interest in the current review were mental health, emotional well-being and social well-being. See Supplementary File 2 for more information.
Eligibility criteria for systematic review.
Criteria clarified during the screening stage (not specified in PROSPERO protocol).
Screening and study selection
The screening and selection process was conducted through Covidence, an online systematic review management tool. All 877 titles and abstracts were screened by R.A.G.O. for possible inclusion. A random 15% sample of these abstracts was also screened independently by T.R.-E. Inter-rater reliability was substantial (Cohen’s kappa = 0.80). Abstracts for which a disagreement emerged were automatically included for full-text screening. One hundred and sixty-two full texts were screened for possible inclusion independently by both R.A.G.O. and T.R.-E., 35 studies were screened by R.A.G.O. only. Inter-rater reliability was acceptable (Cohen’s kappa = 0.69). All disagreements were discussed with a third reviewer, K.G., to make a final decision. Reasons for exclusion at full-text screening stage are detailed in the PRISMA diagram (see Figure 1).
PRISMA flow diagram.
Data extraction, quality appraisal and thematic synthesis
Data from the included studies were extracted by R.A.G.O. using an adapted version of the Joanna Briggs Institute data extraction form (see Supplementary File 3). Next, data for the thematic synthesis were extracted by R.A.G.O. by identifying text within the ‘Results’ or ‘Findings’ sections of included studies and copying paragraphs or sections that discuss events or experiences that impacted female participants’ mental health, emotional well-being or social well-being (i.e. the concepts of interest). This process involved reading and re-reading the text, while continuously referencing the definitions of the concepts of interest (see Supplementary File 2 for definitions) and extracting data that were relevant to these concepts. In studies that included participants of other genders, only text describing findings that were relevant to the female participants were extracted. This included (1) descriptions of the results (e.g. thematic analysis), where a specific reference to one or more female participants was made, and (2) direct quotations from female participants. The resulting text formed the data for the thematic synthesis. Parallel to data extraction, each included study was evaluated by R.A.G.O. using the National Institute for Health and Care Excellence Qualitative Quality Appraisal checklist (NICE, 2012). This checklist includes 14 criteria on which to judge the quality of the study, under 6 headings, including ‘theoretical approach’, ‘study design’ and ‘ethics’. Finally, the rater must make an overall assessment of the quality of the study, rating it ‘high-quality’, ‘medium-quality’ or ‘low-quality’, based on the proportion of the checklist criteria that were fulfilled.
Thematic synthesis as described by Thomas and Harden (2008) was used to gain understanding from the data, which goes beyond the findings of the original papers. Thematic synthesis was completed in a three-step process: (1) line-by-line inductive coding of the extracted text, (2) development of a descriptive thematic map and (3) development of an analytical thematic map to address the specific research question raised by the present review. R.A.G.O. and M.D. undertook this collaboratively (see Supplementary File 2 for a detailed description of this process).
Community involvement
M.D., the second author of the present study, is an autistic healthcare professional and academic. M.D. co-analysed the data and contributed to the writing of the manuscript.
Results
Overview of studies
The reviewers identified 877 unique records, with a total of 52 studies being included in the current review. Within these studies, a total of 973 autistic girls and women were participants (252 of these were from online forums within one study; Nagib & Wilton, 2020; and 277 of these were from an online survey study; Bradley et al., 2021), with ages ranging from 13 to 70+ years. Excluding the studies by Nagib and Wilton (2020) and Bradley and colleagues (2021), the average female sample size was approximately 9 (Mean = 8.88).
Of the studies included in this review, 44 discussed experiences that impacted emotional well-being, 44 discussed social well-being and 32 included a discussion of factors related to mental health. The United Kingdom accounted for the largest number of studies included in this review (n = 26). Nine were conducted in Australia and 11 in the United States. The primary study topics of the included studies varied and included topics such as general experiences and needs (n = 6), university experiences (n = 6) and camouflaging/masking (n = 5). The quality of the studies was generally good, with 34 receiving a high-quality rating (++) and the remaining 18 receiving a medium-quality rating (+). See Table 3 for an overview of included studies.
Overview of studies included in the systematic review.
QA: quality appraisal; EW: emotional well-being; SW: social well-being; MH: mental health; PCT: personal construct theory; IPR: interpersonal process recall.
Approximate, specific not reported in study.
Determinants of mental health, emotional well-being and social well-being
Using thematic synthesis (Thomas & Harden, 2008), three themes, comprising nine subthemes, were developed from the extracted data, where each subtheme describes a determinant of mental health, emotional well-being and/or social well-being of autistic girls and women. All subthemes fall under one or more of three themes: The Autistic Neurotype, The Neurotypical World and Stigma (see Figure 2). Themes were often not explicitly mentioned within the participants’ accounts or within the descriptions of the subthemes but appeared to underpin the issues raised by participants. All subthemes are connected to having an ‘Autistic Neurotype’. In addition, all except ‘autism-centric mental health features’ also fall under the themes of ‘The Neurotypical World’ or ‘Stigma’. Thus, as represented in Figure 2, it is typically not an autistic neurotype alone that results in poorer mental health and well-being, but rather interaction with various aspects of a neurotypical world and/or the experience of stigma against autistic people. See Supplementary File 4 for a full description of the thematic synthesis presented below.
Overview of the determinants of mental health, emotional well-being and social well-being identified in the thematic synthesis.
Theme 1: autistic neurotype
The ‘Autistic Neurotype’ encompasses the biological and psychological aspects of the autistic neurotype, such as a preference for routine and predictability, autistic communication preferences and particular sensory profiles. All subthemes presented below under all three themes are related to having an autistic neurotype.
Subtheme 1.1: autism-centric mental health features
Being autistic was associated with some traits which participants indicated put them at risk of mental health difficulties. For example, participants mentioned having ‘obsessive tendencies’ that were associated with obsessive-compulsive disorder (OCD; Baldwin & Costley, 2016), having more ‘literal’ cognitive styles that contributed to disordered eating habits (Kinnaird et al., 2019) and experiencing alexithymia, which is characterised by difficulties in emotion identification: In individual therapy, participants often described difficulties with emotion identification and their therapists’ insensitivity or unawareness of these difficulties. (Tint & Weiss, 2018)
Participants also described experiencing autism-specific distress responses, including ‘meltdowns’ and ‘shutdowns’: It’s like the shutdown is a meltdown aversion, trying to protect itself . . . But if I keep getting pushed through a shut-down, I will often meltdown. (Halim et al., 2018)
Theme 2: the neurotypical world
Having an autistic neurotype while living in a world designed largely by and for neurotypical people appeared to contribute to the mental health and well-being of autistic girls and women.
Subtheme 2.1: predictability versus ambiguity
Many participants discussed that predictability and routine were good for their emotional well-being, as they were calming and helped them to cope. On the other hand, ambiguity and unpredictability provoked stress and anxiety. Autistic girls and women often found the neurotypical world, including neurotypical people and environments, unpredictable: Participants reported that unpredictability would increase their anxiety, as described by Elenore: ‘I think in general things that are unpredictable [raise my anxiety] . . . I am much better with a very nice set plan of what happens’. (Robertson et al., 2018)
Subtheme 2.2: sensory experiences
Autistic sensory profiles were often not compatible with neurotypical sensory environments. Many women and girls mentioned how sensory experiences impacted their mental health and emotional well-being. Emotions mentioned included ‘fear’, ‘anger’, ‘stress’ and ‘discomfort’ (Robledo et al., 2012; Smith & Sharp, 2013; Tierney et al., 2016). Social well-being was also impacted, as sensory environments became a barrier to attending some social activities: I would make excuses to go outside, say I was hot, it was quieter in the night in town, but very soon I would just not go to clubs, pubs etc. I felt like I didn’t have a choice it was just too painful to stay. (Smith & Sharp, 2013)
Subtheme 2.3: passionate interests
Passionate interests were reported to be beneficial to autistic girls and women; they promoted emotional well-being by eliciting feelings of joy, pride and freedom, facilitated social connections and fostered learning. However, the neurotypical world did not always allow for immersive engagement in passionate interests, and differences between autistic and neurotypical interests could create a barrier to social connections: ‘. . . when I was at primary school I was very obsessed with windmills and no other kid . . . shared my interest’. She poignantly described her experience of feeling different as an ‘invisible glass barrier between me and them’. (Kanfiszer et al., 2017)
Subtheme 2.4: support and accommodations
The participants described the type of support that would benefit their social and emotional well-being, which included education for the autistic girls and women themselves, as well as ways that the neurotypical systems (e.g. workplaces and healthcare settings) could adapt to accommodate their needs better. Participants noted the need for autistic-led support or professionals with a strong understanding of autistic people: Melanie explained that the reason she wanted to have a face-to-face appointment was that ‘phone calls are difficult. I can do them, but it’s just another stress area; I’m very stressed and I don’t want to do extra stressful things’. (Rogers et al., 2017)
However, participants often described barriers to accessing appropriate support and services, including support only being offered in a crisis, lack of timely access to assessment and poor autism understanding among professionals. Unfortunately, this lack of support in turn led to poor mental health and well-being: Even when able to successfully access services, many participants described being a square peg in a round hole as they highlighted a need for individually tailored supports. (Tint & Weiss, 2018)
Theme 3: stigma
This theme captures the experience of autistic people being considered ‘less than’ non-autistic people, which may manifest in various ways, such as bullying, discrimination or general invalidation of autistic preferences or experiences.
Subtheme 3.1: navigating social expectations
Women and girls often reported experiencing stress, fear and anxiety during social interactions, which could lead to avoidance of social situations and reduced opportunities to develop desired social bonds. Girls and women described the pressure to conform to neurotypical social norms and the impact that this had on their ability to accept themselves. Internalised ableism was evident both explicitly and implicitly in the participants’ accounts: I feel awkward and ashamed [when interacting with neurotypical people] . . . I still have a lot of internalised ableism about how I ‘should’ be able to do things that I find difficult. (Crompton et al., 2020a)
Participants often described the phenomenon of consciously or unconsciously suppressing their autistic traits in favour of a more neurotypical presentation, a process known as ‘masking’. It was revealed as an essential tool of girls and women to avoid bullying, discrimination and rejection. However, masking was said to have a largely negative emotional impact, as participants described feeling ‘exhausted’, ‘drained’, ‘embarrassed’, ‘unhappy’ and ‘anxious’ as a result of masking (Bernardin et al., 2021; Hull et al., 2017; Leedham et al., 2020; Tierney et al., 2016). It was also described as negatively impacting on their sense of self and as a barrier to authentic social relationships: That is the downside of [masking]. Having no true friends or having less true friends [. . .] you’re basically changing who you are. (Bernardin et al., 2021)
Subtheme 3.2: social (dis-)connection
Autistic girls and women spoke of their desire and need for social connections in life to ensure their social well-being. They described the importance of inclusivity, supportiveness and acceptance within their friendships and relationships. Friends having an appreciation of their personal qualities, having shared interests and activities, and having one particularly close friend that supported integration into a larger social group were key facilitators of social connection: Through her I met other children in the neighborhood. For them I was a bit odd . . . they laughed with me but not at me. Biene made sure of this. Yes, I owe a lot to Biene! (Krieger et al., 2012)
Many participants described the barriers to social connection they experienced, most notably the mismatch between autistic and neurotypical social and communication styles and preferences. They described regularly experiencing misunderstandings and miscommunications with neurotypical people, which caused them varying levels of distress: Five participants had used self-harm as a way to cope with feelings associated with frequent rejections and miscommunications. (Tierney et al., 2016)
They expressed a need to be better understood and felt that their neurotypical peers may have lacked empathy in this regard. On the other hand, participants often felt at ease with other autistic people, with whom they felt well matched and accepted: with autistic people, who speak my language . . . it goes fantastically well most of the time. (Livingston et al., 2019)
Subtheme 3.3: embracing autistic identity
Participants described how being (formally) identified as autistic gave them back power, control and validation. The associated self-understanding led to emotional benefits, such as increased well-being through improved self-acceptance, coping skills and self-compassion. The discovery also led to social benefits, for example, developing connections with people in the autistic community, where they described feeling a sense of belonging, understanding and acceptance. It also helped them to strengthen existing relationships with neurotypical people, through improved shared understanding of autistic needs and preferences: It’s very important to have autistic space for people . . . sometimes people fear this is a form of self silo-ing or segregation and I’m not trying to say we don’t need to survive in the non-autistic world too . . . but it’s such a lifeline for many of us. (Crompton et al., 2020a)
Unfortunately, participants also discussed the toll of missed or misdiagnosis and described how a lack of diagnosis had caused significant struggles throughout life, including many developing mental health difficulties: I was alone with the constant struggling, having no idea why I felt and behaved the way I did. I was told that I was simply too ‘dramatic’ or ‘sensitive’. (Baldwin & Costley, 2016)
Subtheme 3.4: victimisation and discrimination
Many girls and women described bullying directly or indirectly connected to being autistic and further described the negative emotional impact of this, which included anxiety and school absences. As well as explicit bullying, many participants experienced exclusion from social groups and the experience of being ‘othered’ by their peers: She also mentioned that her anxiety around peer interactions had recently resulted in her staying at home from school for two weeks as she was being bullied for having immature interests. (Kelly et al., 2018)
Many participants reported experiencing abuse, and it was suggested that autistic girls and women could be more vulnerable to such abuse than other groups due to difficulty recognising ill intent, which perpetrators take advantage of: I was really close friends with a girl but my dad pointed out that I kept doing things for her but I didn’t see it. Like we’d go out for lunch and I’d pay and she wouldn’t pay. (Kanfiszer et al., 2017)
Discussion
The present review aimed to identify factors that contribute to the emotional and social well-being and mental health of autistic girls and women by synthesising qualitative self-reports within the available literature. Fifty-two studies were identified that met the inclusion criteria. Through thematic synthesis, three themes, encompassing nine subthemes, were developed. ‘The Autistic Neurotype’ was the first theme, which encompassed biological and psychological aspects of the autistic neurotype, such as a preference for routine and predictability, autistic communication preferences and particular sensory profiles. The synthesis of perspectives presented in this review suggested that the autistic neurotype, in general, did not significantly impact well-being and mental health. Rather, the formulation of the data presented in Figure 2 highlighted that these biological and psychological processes were experienced through the lens of a variety of social factors, which may be summarised under the themes of ‘The Neurotypical World’ and ‘Stigma’. Well-being and mental health outcomes were shaped through interaction with these social factors.
The neurotypical world
The present review highlighted how the neurotypical world caters to neurotypical needs and preferences, often disregarding the needs and preferences of neurodivergent people. The sensory environment was often described as uncomfortable, distressing or even painful for the autistic girls and women in this review (e.g. Robledo et al., 2012). Adverse reactions to sensory stimuli were reported to occur in response to crowded places (Crompton et al., 2020a), bright lights (Tint & Weiss, 2018) or particular acoustics (Krieger et al., 2012). The experience could be so traumatic that it may even lead to ‘meltdowns’ or ‘shutdowns’ (e.g. Baldwin & Costley, 2016) and can create a barrier to social well-being, as many social environments are inaccessible to them as a result (Crompton et al., 2020a). Many participants discussed the type of support and accommodations they need in order to cope in the neurotypical world, such as increased levels of structure, support with organisational skills and tailored anxiety interventions. Improved autism understanding appeared to underpin many of the supports and accommodations that were required, which was relevant to the autistic girls and women themselves, as improved self-understanding allowed for increased self-advocacy and self-care, thus promoting their well-being and mental health (e.g. Baldwin & Costley, 2016; Seers & Hogg, 2021). Improved autism understanding was also seen as important for professionals providing support, as this may allow them to appropriately tailor the supports offered (e.g. Griffith et al., 2012; Tint & Weiss, 2018).
Stigma
Many of the social structures and expectations that exist in society are not in line with autistic needs and preferences. Moreover, autistic needs and preferences are generally considered inferior to neurotypical preferences, highlighting the stigma that autistic people face in relation to their natural ways of being. Participants described miscommunications, misunderstandings and invalidation of the autistic experience, leading to stress, exhaustion, arguments with loved ones and the deterioration of friendships (Crompton et al., 2020a; Halim et al., 2018; Leedham et al., 2020; Tierney et al., 2016). Discrepancies between autistic and neurotypical communication styles are often considered the outcome of autistic ‘social deficits’. However, The Double Empathy Problem (Milton, 2017) provides an alternative framework to explain the misunderstandings between autistic and non-autistic people. It outlines that it is not a deficit present in autistic people but rather a mutual incomprehension between non-autistic and autistic people that gives rise to the difficulties that autistic people experience. In line with this, empirical research has shown that matched neurotype pairs were rated as having higher rapport than mixed neurotype pairs, indicating that autistic people interact naturally and harmoniously with other autistic people (Crompton et al., 2020b). Similarly, the present review highlighted participants’ reported ease of communication with other autistic people, as well as supportive friendships and groups within the autistic community, which benefitted their well-being and mental health (e.g. Cook et al., 2021a; Halim et al., 2018; Robertson et al., 2018).
The stigma associated with being autistic also often led to other negative experiences, such as bullying, masking, social exclusion and barriers to diagnosis or support, which in turn impacted mental health and well-being (e.g. Bernardin et al., 2021; Hull et al., 2017; Jones et al., 2013; Leedham et al., 2020). Goffman (1963) described stigma as the result of a characteristic, behaviour or social category that is socially discrediting to an individual. Stigmatised groups engage in ‘impression management’ to keep their stigmatised status or characteristics concealed, to avoid the negative social consequences of stigma. This is easily understood in the context of the experiences of autistic people (Milton, 2013; Pearson & Rose, 2021), who describe masking to avoid bullying, exclusion and discrimination. While all genders are known to engage in masking, previous research has shown that females may engage at higher rates (Hull et al., 2020; Wood-Downie et al., 2020). This review also demonstrated that the consequences of masking were detrimental to well-being and mental health, causing anxiety, stress, exhaustion and even meltdowns (e.g. Crompton et al., 2020a; Tint & Weiss, 2018), as well as compromising the authenticity of relationships (e.g. Bernardin et al., 2021; Hull et al., 2017). Such negative emotional impacts of masking have also been shown in quantitative research (Cassidy et al., 2020; Cook et al., 2021b; Hull et al., 2021). Overall, the findings of the present review are in line with emerging evidence that autistic people experience ‘minority stress’ due to their stigmatised identity (Botha & Frost, 2020).
Practical implications
Universal Design refers to eliminating barriers by designing environments in an accessible way from the outset, removing the need to provide individual adaptations at a later stage (Steinfeld & Maisel, 2012). In the context of autism, this may include providing increased certainty via clear visual information or designing public spaces to limit any adverse sensory stimuli (Milton et al., 2016; Mostafa, 2014). Perhaps more challenging is designing a social environment where neurodivergent styles of behaving, communication and socialising are better understood and embraced. Autism acceptance training, anti-stigma campaigns or neurodiversity educational programmes have shown some promise in addressing these issues in school and university settings (e.g. Alcorn et al., 2022; Jones et al., 2021; Ranson & Byrne, 2014). In terms of services, the need for timely autism diagnoses for females and greater autism knowledge within support services is strongly indicated by the present review. Furthermore, breaking down stigma can begin during the assessment process, by adopting neurodiversity-affirmative and strengths-focussed approaches (e.g. Brown et al., 2021; Courchesne et al., 2015).
Future research
This review focussed exclusively on the perspectives of autistic girls and women, therefore striving to stimulate future research that is in line with the perspectives and needs of autistic females. As such, while this review provided a broad overview of factors that contributed to the mental health and well-being of autistic females, future research should be conducted to understand the identified factors in more depth. In addition, although the present review focussed on autistic females, it is likely that many of the findings are also applicable to autistic males or autistic people of other genders. Further research would be necessary to confirm this and perhaps tease out gender differences.
Strengths and limitations
The present review has various strengths. It used existing literature across a range of study topics to improve understanding of autistic females’ mental health and well-being. The review took a systematic approach and involved two (and at times three) researchers determining study eligibility and performing the analysis. In addition, the involvement of M.D. as an autistic medical professional and researcher was highly valuable, as she was able to provide invaluable insights into the autistic experience. The quality of the studies reviewed was generally good, with 34 high- and 18 medium-quality studies, which may be partly accounted for by the exclusion of unpublished manuscripts from this review. Although this may have somewhat restricted our findings, it may also allow for higher levels of confidence in the conclusions drawn from this review.
The conclusions of the present review must be interpreted with caution, as they are based solely on the literature that was available and identified using the process outlined in this review. That is, our search strategy was limited to searching online databases and did not include other search methods, such as hand-searching reference lists of eligible papers. Furthermore, our eligibility criteria excluded grey literature. Thus, our findings are impacted by the biases that exist within the literature regarding which research projects receive funding, are completed or are successfully published in peer-reviewed journals. For example, the studies included in this review largely focused on aspects of the autistic experience, but we must assume that autistic people’s mental health is likely also determined by many of the same factors as non-autistic people, including biological (e.g. genetic), psychological (e.g. cognitive patterns) and social (e.g. socio-economic status) factors. In addition, while we endeavoured to report on the perspectives of females, the present review may not have adequately considered the variance in gender identities that exist and how these were represented in the original studies. That is, the original studies largely reported only ‘male’ and ‘female’ genders. This is especially problematic given the higher likelihood of autistic people not identifying with the sex they were assigned at birth (Walsh et al., 2018) and evidence of participants who were identified as female within the original studies in fact exploring alternative gender identities, ‘. . . because I think like or identify with another gender . . . sometimes, like I don’t feel like particularly female . . . ’ (Tierney et al., 2016, p. 80).
Conclusion
Based on the perspectives of the autistic girls and women included in the present review, experiences of stigma and the challenges associated with living in an unaccommodating neurotypical world were reported to play a significant role in the mental health and well-being of autistic females. These findings will not be surprising to many, as similar conclusions have been drawn by some people for many years, particularly autistic people themselves, both in the realm of academia and outside of this (The Autistic Advocate, 2018; Milton, 2013; SoYoureAutistic, 2021). This review supports the view that increased emphasis must be placed on the social determinants of the autistic experience in research and support services to allow autistic people to thrive.
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Supplemental material, sj-docx-5-aut-10.1177_13623613231215026 for Perspectives of autistic adolescent girls and women on the determinants of their mental health and social and emotional well-being: A systematic review and thematic synthesis of lived experience by Rachel AG O’Connor, Mary Doherty, Theresa Ryan-Enright and Keith Gaynor in Autism
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This review was completed as part of the first author’s Doctorate of Psychological Science in Clinical Psychology, which was funded by the Health Service Executive, Republic of Ireland.
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References
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