Abstract
Recently, there has been increasing attention to key intersections between sex, gender and autism (Lai et al., 2015), including the so-called ‘female autism phenotype’ (Mandy et al., 2012), social ‘camouflaging’ (Hull et al., 2017) and experiences of gender diversity in autistic people (van der Miesen et al., 2016). This research and related clinical practice have increased awareness of the breadth of autistic experience. However, sex and gender often have been conflated in this work, and gender viewed through a binary lens. The term ‘gender’ refers to a range of experiences, both internal and external (Becker et al., 2017; Ehrtmann et al., 2019), and the intricate interplay between social gender and inner gender-related experiences has yet to be articulated in autism (Cooper et al., 2018). In this editorial, written as a collaboration between clinician researchers and autistic advocates (Fletcher-Watson et al., 2019), we explore key topics in the field and offer recommendations for advancing this work through more diversified, sex- and gender-informed lenses, and with a focus on the lived experiences of autistic people.
The ‘female autism phenotype’
Increased attention to expressions of autism in girls and women has led to descriptions of a putative ‘female autism phenotype’ (Hull et al., 2020). Typically, these descriptions are presented as contrasts to common expressions of autism in boys and men (Lai et al., 2015). For example, it has been noted that many autistic girls and women have fewer signs of repetitive behaviours and narrow interests than autistic boys and men, and when narrow interests are present, they may be less immediately obvious (Lai & Szatmari, 2020). There is emerging evidence that individuals with XX sex chromosomes, the sex chromosomes most women have, may be less likely to express characteristics commonly understood to be autistic (the so-called ‘female protective effect’; Werling, 2016), although such effect does not seem to come from the X chromosome per se. Autistic girls and women appear to have overall stronger social motivation compared to autistic boys and men (Sedgewick et al., 2016, 2019); this could be driven by female sex-specific neurodevelopmental factors (Chawarska et al., 2016; Werling, 2016) and the greater social gender expectations placed on girls and women (Kreiser & White, 2014). Some autistic girls and women may focus on social information, social learning and efforts towards compensatory social coping, which may come at a cost in terms of fatigue and poorer mental health (Hull et al., 2020). The experience of compensatory social coping (e.g. trying to act as ‘non-autistic’) has been described by some as ‘camouflaging’ or ‘masking’ (Hull et al., 2017); however, these terms are not universally embraced in the autism advocacy communities. Overall, these lines of research point to multiple factors associated with the male preponderance of autism diagnosis prevalence and patterns of underidentification of autism in girls and women.
Sex and gender as separate, multi-component dimensions
Patterns of differences between females and males, girls and boys, and women and men in autism are clearly important and relevant for research and clinical practice, but current approaches to this work will be enhanced with a broader focus on the various facets of gender, as opposed to sex alone. For example, gendered expectations and social conditioning, beyond sex-related biological mechanisms, play a role in shaping the individual development of autistic girls and women (Lai & Szatmari, 2020). According to the World Health Organization, sex refers to biological and physiological characteristics, which include sex-related chromosomes (http://www.euro.who.int/en/health-topics/health-determinants/gender/gender-definitions); sex is often perceived as a binary construct, but in fact, its components can be multi-categorical or dimensional (Joel & McCarthy, 2017). Gender encompasses experiential, social and cultural components including ‘gender norms’ (Barnett, 1997), ‘gender roles’ (Witt, 1997), ‘gender-related interests’ (Davis & Hines, 2020; Dittmann et al., 1990; Fast & Olson, 2018), ‘gender-related expressions’ (Becker et al., 2017; Toomey et al., 2010) and ‘gender identity’ (i.e. the internal gender that a person experiences themselves as; American Psychological Association, 2015). Autism-related characteristics may facilitate greater freedom regarding social gender roles and societal gender expectations; autistic individuals may feel less pressure to conform to such roles (Strang et al., 2018). This may allow for increased expression of gender diversity, such as with gender expressions, interests and identities. There is substantial evidence that many autistic individuals experience an incongruence between assigned sex and gender identity (van der Miesen et al., 2016). In a recent Dutch study, around 15% of autistic adults reported a gender identity different from their sex assigned at birth (Walsh et al., 2018). The associations of autism and gender diversity characteristics have also been found in a large general population sample of school-age children in Canada (Nabbijohn et al., 2019). Community expressions of gender diversity in autism are common. For example, the Autistic Women’s Network recently renamed itself the Autistic Women & Nonbinary Network in response to its constituency’s gender diversity (Allison, 2018). We still do not know the various gender developmental trajectories across the lifespan in autistic individuals and how they intersect with evolving gender narratives and conceptualizations in societies and cultures.
The importance of nonbinary conceptualizations of gender
There is an increasing recognition of the prevalence of gender experiences that fall outside of the ‘male’ and ‘female’ binary categories (Vincent, 2019), including experiences of having components of both, neither or fluidity of the binary genders. Emerging evidence suggests that nonbinary experiences and identities may be particularly common in autism (Dewinter et al., 2017; Stagg & Vincent, 2019; Walsh et al., 2018). We currently have no validated means of measuring nonbinary gender experiences in autism, and there is limited information on nonbinary autistic individuals’ gender-related needs, experiences or mental health. Community-based accounts of gender development in autism suggest that societal expectations for binary gender expressions may lead some autistic people to feel uncomfortable with their gender (Griffin, 2016).
Understanding gender in autism
With the tendency to focus on differences in self-awareness in some autistic people (Huang et al., 2017), there has been a general lack of attention to autistic people’s inner experiences (Gillespie-Lynch et al., 2017) or, in some cases, even acknowledgement that autistic people have an inner experience. Enhancing curiosity about inner experiences in autism is critical as it pertains to issues related to sex and gender. Gender includes elements that are deeply personal – that another person would not understand or know without direct communication. And there are risks (for research, clinical care, personal freedoms) associated with (1) incorrect assumptions about sex and gender (e.g. concerning a person’s gender identity, traumatic experiences, comfort with gendered roles) or (2) mistrust of the voiced experience of autistic people who express gender-related characteristics and needs that diverge from the ‘average’ experience. Understanding the meanings of sex and gender in the lives of autistic people will require an autism-informed framework. Some autistic people may not communicate about gender-related experiences and needs in ways that are immediately obvious (Strang et al., 2018). And for some autistic people, understanding and integrating abstract social gender norms and expectations with inner experiences may be challenging, for example, ‘what is the difference between a boy or a girl?’ (Strang et al., 2019) or ‘understanding women [my own sex] doesn’t come naturally to me. I needed a book to explain it to me’. (Griffin, 2016). So, to better capture gender in autism, it will be important to consider those autistic qualities that may affect (1) others’ understanding of the gender-related experiences and needs of the autistic individual and (2) the autistic individual’s own perceptions and comprehension of gender-related meanings (e.g. how the autistic individual relates to the neurotypical ‘gendered’ world).
Experiences of gender-related expectations in autism
Amid the complex process of reconciling social gender norms with one’s inner experiences, some autistic individuals may feel unique pressure to conform to gender-related expectations. Social intervention approaches often teach relational skills as a set of fixed rules, which may reinforce common gender stereotypes about how a person of a certain sex/gender should act (Tint et al., 2018; Tint & Weiss, 2017). In particular, compliance-based teaching, in which specific social behaviours are rewarded, while actions driven by internal guiding factors or motivations are not, may contribute to strong adherence to stereotypical gender norms and expectations, even if they are incongruent with inner experience and needs (Jack, 2014). Gender stereotypes might also be absorbed by autistic people through the process of ‘camouflaging’ (i.e. internalizing gendered social conventions to mask differences; Hull et al., 2017). Gendered pressures resulting from structured social intervention approaches (many of them being adopted as standard care for autistic people currently) or ‘camouflaging’ might be harmful to autistic people in some instances (Cassidy et al., 2019). Although some autistic people can overcome this pressure, other autistics may struggle to challenge gender expectations, even if they experience these expectations as repressive (Griffin, 2016).
Sex- and gender-related considerations in the identification of autism
Characteristics that have been associated with a ‘female’ versus ‘male’ version of autism are not isolated to one sex or gender. The processes of ‘camouflaging’, though described in many ‘female experiences’ of autism (Hull et al., 2020) and reportedly more intense overall in autistic women, are present also in autistic men and nonbinary autistic adults (Hull et al., 2019). Similar processes have been described outside of autism research, such as among gender-diverse people and LGBTQ+ people more broadly, who may learn to ‘pass’, ‘code-switch’ or ‘blend in’ for social or safety reasons (Fuller et al., 2009; Spradlin, 1998). The sex-based phenotypic descriptions as they pertain to autism identification and diagnostics, as well as tailoring of accommodations and supports, have insufficiently integrated gender as an independent and critical second set of variables (Kreiser & White, 2014; Lai & Szatmari, 2020). Consider, for example, an assigned male at birth with female gender identity who has affirmed (formerly known as ‘transitioned to’) a female gender role. How does an informed clinician consider the question of autism in such a gender-diverse individual? What gender norms are to be used on normed autism screening tools (e.g. the Social Responsiveness Scale)? Is the emerging putative ‘female autism phenotype’ to be expected and impactful on diagnostic considerations? And what of the autistic cisgender boy who is subthreshold on so-called ‘gold-standard’ autism diagnostic measures, possibly due to factors related to camouflaging? If researchers and clinicians are broadening their understanding of what autism looks like in girls and women based on emerging studies that support such conceptualization, should the same be applied to boys, men or gender-diverse people who embody the putative ‘female autism phenotype’ as well?
Initial recommendations for embracing a sex- and gender-informed framework in autism research and clinical practice
Sex and gender should be included and measured as separate constructs, comprising multiple components that can be operationalized as continuous or multi-categorical variables. New, autism-friendly measures need to be developed, and these measures should capture both binary and nonbinary experiences of gender. Assessment and diagnosis should also consider the impact of the gendered world and gendered social milieus on autistic people (e.g. how are social and cultural gender norms and expectations experienced by autistic people and how do these experiences impact them developmentally?)
Concepts such as the ‘female autism phenotype’, ‘camouflaging’ and ‘female protective effect’ reflect important findings and constructs that advance the field, but the terms and conceptualizations will be enriched with the engagement of autistic people in defining the fullness of the concepts. Further, we need to understand how these concepts are experienced by autistic individuals who may or may not find their own life journeys concordant with them. Do they create new expectations and stereotypes that will need to be deconstructed and contextualized? And how is the specific language developed so far experienced by autistic people (e.g. ‘female protective effect’)? When new terms are coined, we must work with the autistic communities to both understand the lived experiences underlying the concepts and avoid gender and/or autism-related stereotypes which may be demeaning or lacking in precision.
The lived experiences of autistic people who express distance from gender conventions or stereotypes and/or their sex assigned at birth reflect a phenomenon that is more than just ‘social awareness differences’. The ability of some autistic people to exist more readily outside of social gen-der expectations and boldly express their inner gender needs has already positively impacted gender-related social justice, as many gender diversity advocates are autistic (e.g. Abeni, 2015; Brown, 2016; Callahan, 2018; McCool, 2017; National Autistic Society, 2018). Take for example, Martine Stonehouse, an autistic transgender woman who drew upon her gender diversity and autistic neurodivergence to help change the law in Canada to provide gender-related medical interventions for transgender people (Alon, 2016). Research should focus not only on the differences in autism as ‘challenges’ or ‘symptoms’ but also on the ways in which autistic characteristics and their overlap with gender diversity may help to advance the understanding of gender. And clearly, respect should be afforded to autistic people who are experiencing and/or exploring gender diversity. We increasingly provide neurotypical youth the room to explore and express their gender identities, and autistic people deserve the same rights and opportunities.
Conclusions
Autistic accounts of gender experiences and gender diversity encourage greater attention to the ways in which sex and gender in autism must be examined separately and dimensionally, and through autism-informed characterization methods. Such work will allow for better understanding of how autistic people experience gender, and how this impacts their experiences of being autistic. As a field, we are just beginning to recognize the inner experiences of autistic people. With regard to sex and gender, such recognition is important for science as well as for the respect of the individual, and in some cases may be lifesaving (White, 2016). Inner experience is too commonly forgotten in autism research and clinical practice. Yet, autistic people who are less attached to, aware of or concerned with gender conventions may in fact be providing an important window into what gender is and can be without the strict overlays of gender-related expectations and social meanings. Some autistic people may be seeing beyond the conventions that bind neurotypical genders and expressions. We encourage an openness to what autistic people have to tell us and teach us about gender – about their own gender experiences and journeys, and maybe even about the ways the world can open to a more expansive view and acceptance of gender-related experiences, less confined by neurotypical social and gender codes.