43 An Intersectional Approach to Understanding the Challenges of Autistic Women

Keywords: Disability, Intersectionality, Women, Diagnosis, Autism

In the media, roles filled for Autistic characters are often portrayed by men. Examples include the movie Rain Man, and TV shows such as The Big Bang Theory, Atypical and The Good Doctor. While the media attempts to showcase Autism, there is a general assumption that only males can be Autistic. Autism may also be perceived as a dichotomy, either an Autistic individual is a genius or requires substantial support. Yet, two important factors are missed in the media presentation and stereotypes. Autism exists on a spectrum and women can be Autistic. The way Autism is often presented in the media is just one example of gender bias. Through an intersectional framework, gender bias in the research literature, diagnostic criteria and additional challenges women on the Autism Spectrum encounter will be explored in this article.

The theory of intersectionality was created by Kimberlé Crenshaw in 1989 to understand the intersecting nature of multiple oppressed identities. These identities form various experiences that differ from those who share one or a few of the identities (Crenshaw n.d.). Intersectionality originated from the need to understand Black women’s challenges in society. It served as an expansion to feminist and antiracist theories which focused mainly on oppression in a singular way (Crenshaw n.d.). Crenshaw emphasized the importance of viewing oppression in terms of multiple identities by stating that Black women are not the dominant race and are also not men. Thus, creating multiple oppressive identities not otherwise faced by Black men or White women (Crenshaw 1991). The interesting feature of intersectionality is how it considers identities as intersecting facets of one another, rather than viewing individual forms of oppression through the lens of the most impactful (Pearson 2010). Furthermore, the framework of intersectionality allows for a better understanding of societal barriers and how to promote inclusion (Crenshaw n.d.). The theory of intersectionality can be utilized in disability research to explore the barriers in society associated with this marginalized population (Ballan 2008).

Along with intersectionality, the social model of disability views disabilities as the consequence of barriers in society that disable a person, which contrasts with the medical model (Saxe 2017). The main distinction between the social model and the medical model is that the medical modal emphasizes individual deficiencies (Saxe 2017). The barriers created for individuals with disabilities are constructed as part of the able-bodied communities that they live in. Removing social and physical barriers would allow people with disabilities to live normal lives (Ballan 2008; Saxe 2017). Autism has long been conceptualized through the medical model and thus promotes a deficit account (Saxe 2017). Autism advocates in the neurodiverse movement have promoted the notion of Autism as a difference in neurology and as a part of natural human diversity (Anon 2021). The theory of intersectionality connects the social model of disability and the neurodiverse movement into a thorough understanding of how other social identities such as gender, class, and race, connect with an Autistic identity (Saxe 2017). Intersectionality allows for a greater understanding of the unique experiences Autistic individuals encounter, while allowing deficit-oriented practices to be challenged, and for inequalities to be examined within social structures (Liasidou 2013).

Gender is a broad term that describes characteristics of masculinity and femininity that are socially constructed. While it is important to acknowledge variation in gender expression and identity, it is beyond the scope of this article. When exploring gender from a male/female binary, those who are female with a disability often experience distinct challenges and disadvantages that set them apart from males with disabilities. (Saxe 2017). Negative outcomes for women with disabilities include higher rates of domestic violence, sexual assault and low employment rates (Naami, Hayashi, and Liese 2012; Saxe 2017; Thiara, Hague, and Mullender 2011). It has been noted that women with developmental disabilities face unfathomable abuse (Saxe 2017). In a study conducted by Pecora et al. (2019) revealed that Autistic women were 78.2% more likely to be a victim of unwanted sexual advances compared to 57.7% of non-autistic women (Pecora et al. 2019). Men’s experience differs with disabilities as they benefit from privilege even though they are impaired by ableism within social structures (Saxe 2017). Aside from their autism diagnosis men live relatively unprejudiced lives (Saxe 2017). However, according to the framework of intersectionality, this would change based on sexual orientation, class, and ethnicity (Saxe 2017).

Three significant barriers describe the realities for women on the autism spectrum. For women who are cisgender, this sets the tone for gender inequality (Saxe 2017). Next women who are autistic are bombarded with an ableist society. This perpetuates a power struggle between themselves and their able-bodied peers. Often Autistic women face challenges to social inclusion in their communities (Saxe 2017). Lastly, Autistic women are underrepresented in the research literature and as such, diagnostic tools to assess autism have largely focused on the male population (Shefcyk 2015). Delving into these three identities allows for a greater understanding of the challenges that autistic women face (Saxe 2017).

According to the medical model, Autism Spectrum Disorder is a neurodevelopment condition characterized by restricted or repetitive behaviours, sensory difficulties, and deficits in social interaction and social communication (CDC 2022b). According to the Center for Disease Control (2022), in 1992 the prevalence rate of autism was 1 in 150 children, and the current research as of 2018 suggests a prevalence rate of 1 in 44 children with a 4:1 ratio of males diagnosed to females (CDC 2022a; Loomes, Hull, and Mandy 2017). With a large population of individuals diagnosed with autism and with the numbers increasing, it is important to develop effective strategies that aid in the navigation of an ableist and neurotypical society (Saxe 2017). Furthermore, since women are viewed as the minority in autism research attention must be brought to the issue (Saxe 2017).

Sex differences in autism spectrum disorders have been identified and do not appear to present the same way in both sexes (Saxe 2017). Several studies examining sex differences in the presentation of autism demonstrate that women show less stereotypical characteristics such as repetitive behaviours compared to men (Mandy et al. 2012). In terms of fine motor skills, women generally have better control (Mandy et al. 2012). Women have more sensory issues than men and have greater difficulty in social situations, with challenges in communication (Lai et al. 2011). Furthermore, Autistic women experience more emotional problems and mental health disorders such as anxiety and depression (Mandy et al. 2012; Saxe 2017). Lastly, women often experience one or more intellectual/learning disabilities along with autism which may present difficulty in accurate diagnosis (Saxe 2017). Understanding the presentation of autism in women is important for several reasons. The differences contribute to specific barriers that impact the process of assessment, diagnosis, interventions, and social inclusion (Saxe 2017). Applying intersectionality to the sex differences in research will allow for a better understanding of the challenges that Autistic women face (Saxe 2017).

In the research literature, women have been often underrepresented because of the “male as norm” ideology, also known as androcentricity which has dominated development studies for decades (Saxe 2017). Studies that have focused on autism have largely focused on male participants with few if any women included and have been generalized (Saxe 2017; Shefcyk 2015). Therefore, sex differences have not been accurately portrayed for Autistic women. Generalizing male characteristics of autism puts women at a greater disadvantage as androcentricity sets the foundation for autism research (Saxe 2017). With intersectionality in mind, women are not only at a disadvantage in research but the theories and interventions generated create barriers as supports are designed with males in mind (Saxe 2017).

One theory that contributes to androcentricity and has dominated autism research is the Extreme Male Brain Theory proposed by Cohen (2002). Essentially the Extreme Male Brain Theory suggests a difference in cognition and affective styles for females and males (Cohen 2002). Males tend to have systematic approaches to cognition while female approaches lean towards empathizing (Cohen 2002). Systematic approaches refer to being able to predict the future behaviours of others based on recurring patterns, while empathizing refers to examining the thoughts and feelings of others to predict behaviour (Cohen 2002). Cohen (2002) hypothesized that Autistic individuals display less empathy than is typical for a male and systemize more. The foundation of the theory rests in biological processes in the brain which are altered resulting in more male characteristics which set up a male bias (Cohen et al. 2011). The underlying mechanisms according to the theory include differences in Y or X chromosomes and exposure to testosterone in utero (Cohen et al. 2011).

The Extreme Male Brain Theory has inflicted harm on Autistic women and has created outrage (Saxe 2017). Women in the autism community have protested against the idea of having a male brain because the underlying assumption is that Autistic women do not have empathy (Saxe 2017). The major criticism of the Extreme Male Brain Theory is that attention to the needs of Autistic women has been relatively ignored. The policies and supports stemming from Extreme Male Brain research have contributed to significant barriers to women on the Autism spectrum (Saxe 2017). Intersectionality helps to explore the barriers that Autistic women encounter in research by recognizing male bias within procedures and protocols. The experiences of women in autism research are exceptionally different from that of males (Saxe 2017).

With the research literature focusing mainly on male participants, assessment and diagnostic tools have a strong male bias. Due to a strong emphasis on the male bias, it is highly probable that many women are underdiagnosed or misdiagnosed (Kirkovski, Enticott, and Fitzgerald 2013). Women who are better at masking their autistic characteristics and appear to be functioning well on the outside are particularly susceptible (Kirkovski et al. 2013; Lai et al. 2011). Part of the complexity of diagnosing women not only comes from sex-specific criteria but with having one or more intellectual/learning disabilities along with autism (Saxe 2017). Women who would benefit from an autism diagnosis may receive a diagnosis of a separate intellectual/learning disability, furthering the idea that autism is specifically a male disability (Saxe 2017). Without an accurate diagnosis and appropriate support, women have a lower quality of life. Over time this may manifest into more severe symptoms (Saxe 2017). Accessing an appropriate diagnosis can help guide women towards self-acceptance of their unique experiences and aid in self-compassion (Saxe 2017). The intersecting nature of being female with an Autistic identity highlight important barriers to accessing an appropriate diagnosis. This is due to screening measures that are designed specifically for male characteristics (Saxe 2017).

The last significant barrier encountered by women on the autism spectrum examined through intersectionality is social inclusion. In general people with disabilities experience prejudice through dehumanization and infantilization (Saxe 2017). Furthermore, being disabled may lead to assumptions based on incompetence, and assumptions based on the notion that individuals with disabilities want to be cured (Saxe 2017). Individuals on the autism spectrum face additional discrimination due to differences in social interaction, communication and appearing less empathetic (Saxe 2017). Differences in social interaction and communication contribute to feelings of isolation in women which may be due to their intersecting identities (Saxe 2017). Additionally, feelings of isolation can lead to a sense of not belonging in society and contribute to mental health issues such as depression (Saxe 2017). Tragically, some Autistic individuals may go on to end their lives due to the isolation and difference they feel in comparison to others (Anon 2019).

Disability intersects with the way that individuals experience their gender. Autistic women often experience a distance from the male Autistic identity and feel removed from the stereotypes of femininity found in neurotypical women (Saxe 2017). Part of the reason that Autistic women experience disconnection from femininity comes from the differences surrounding the understanding of social and gender norms. Differences in conceptualizing the gender binary likely contribute to women feeling less like neurotypical women who understand societal expectations (Saxe 2017). Women are also expected to be empathizers and better communicators according to the Male Brain Theory (Cohen 2002). Thus, experiencing differences with neurotypical social situations and social norms put Autistic women at a greater disadvantage in society. This makes Autistic women more vulnerable to discrimination compared to neurotypical individuals (Saxe 2017).

The intersecting factors of being a woman with autism create experiences of social isolation otherwise not faced by individuals with other disabilities or men with autism (Saxe 2017). This excludes Autistic women in two distinct ways. The first way women experience exclusion is from the neurotypical female role, and secondly from the autistic community (Shefcyk 2015). Women in general are held to specific societal standards and Autistic women are subjected to the same standards. Yet, Autistic women have trouble fitting into a neurotypical female role (Saxe 2017). Second, the standards placed on Autistic women are not the same as those of Autistic men. This further complicates social communication and enhances the challenges women experience (Saxe 2017). From here, intersectionality demonstrates the marginalized experiences of Autistic women and the need to further break down the barriers (Saxe 2017).

Intersectionality of the challenges faced by Autistic women highlights various areas of concern that need to be addressed in further research. First, more attention to the inclusion of women in autism research is required in addition to comparisons between the sexes (Saxe 2017; Shefcyk 2015). This will allow for better sex-related supports to be implemented and facilitate a higher quality of life for women on the Autism spectrum (Shefcyk 2015). Second, utilizing an intersectional framework requires procedures within research to be changed in terms of participant samples (Saxe 2017). Intersectionality holds the position that women on the Autism spectrum have completely different experiences than men on the Autism spectrum and neurotypical females (Saxe 2017). A critical analysis through the lens of intersectionality would require 4 participant groups to be focused on in research. Two groups of neurotypical individuals and two groups of neurodiverse people broken down into binary sex categories of male and female (Saxe 2017). Third, a core feature of intersectionality emphasizes that barriers are created within social structures. Therefore, to gain a thorough understanding of the challenges Autistic women experience, exploration of all social domains is required (Saxe 2017). Finally, autistic individuals in general need to be included in the conceptualization of research designs (Saxe 2017).

To conclude, both identity-first and person-first language were used throughout this paper to reflect the various ways one identifies with autism. Intersectionality provides a framework to view the complexities associated with being an Autistic woman in society. It highlights several barriers in the realm of research, diagnostic criteria and social inclusion that need to be addressed. Addressing barriers such as male bias in assessments, research bias and challenges with social inclusion both with femininity and in the Autistic community will help to better support women and contribute to a higher quality of life.

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