Reacting to autism’s continually shifting ontology at any given historical moment is challenging; however, while knowledge and understanding about autism in childhood is being regularly updated, autism in adulthood is still poorly understood (Lai & Baron-Cohen, 2015). According to Wright, Brooks, Astous, and Grandin (2013), “the phenotyping, diagnostics, and understanding of autism in adulthood and aging can be considered the discovery of new territory slowly being mapped and catalogued” (p. 23). A diagnosis of autism in adulthood, while gradually increasing, is still relatively rare. Research continues to focus heavily on children, and as a result, few people have a concept of how autism manifests in adults. Behaviours, such as repetitive body movements, are often mistaken for signs of obsessive-compulsive disorder or even psychosis. Mental-health professionals often lack the skills or experience to distinguish autism in adults, from diagnosed disorders with which they are more familiar (Lehnhardt et al., 2013). Consequently, many adults on the autism spectrum have spent much of their lives struggling to fit in without knowing why, with the wrong diagnosis, consigned to psychiatric institutions, or overmedicated for disorders that were non-existent (Wright, 2015). These and other aspects, such as inadequate services and insufficient professional assistance and information (Hagland, 2009), has meant that whether an adult suspects that they may have an ASC, or whether a diagnosis is gained or not, many adults with ASC may not achieve the understanding or specialised help that they require. The result is that they and their families are often obligated to bear the responsibility of this lack of awareness.
It is estimated that approximately 50 per cent of people on the autism spectrum are females, but females tend to be missed in the diagnostic process (Garnett & King, 2019). Even when females with ASC are identified, they usually receive a diagnosis much later than equivalent males and also need to exhibit more severe autistic symptoms and greater cognitive and behavioural problems to meet ASC criteria (Bargiela, Steward, & Mandy, 2016). A study conducted by Brooks (2014) concluded that a factor in the under-diagnosis of women was that they presented with fewer social and communicative deficits than men. Whereas Bargiela et al. (2016) suggest that an explanation of the diagnostic bias against females is a possible female autism phenotype. They propose “a female-specific manifestation of autistic strengths and difficulties, which fits imperfectly with current, male-based conceptualisations of ASC” (Bargiela et al., 2016, p. 3282). Alternatively, the results to a study conducted by Ketelaars et al. (2017), concluded that compared to women who are NT, women with ASC showed similar impairments to men with ASC in the area of social attention, with similar atypical gaze behaviour and deficits in attending to social stimuli. They found that while women with ASC revealed an initial interest in social aspects, the women in their study either failed to maintain this initial interest, or used compensatory strategies, such as focusing attention on the non-social aspects of presented stimuli.
Camouflaging social communication difficulties by either hiding behaviour that might be viewed as socially unacceptable, or artificially “performing” social behaviour deemed to be more neurotypical, has also been found to be a major contributor to a lack of recognition for females (Lai et al., 2016; Schuck, Flores, & Fung, 2019). While it has been established that camouflaging social communication difficulties is a compensatory behaviour undertaken by the majority of both males and females on the autism spectrum (Attwood, 2015; Willey, 2014), the study by Lai et al. (2016) found that females are usually better at compensatory behaviour than males, and contributed to them remaining undetected and undiagnosed for longer. Confirming the findings from Lai et al. (2016), Schuck et al. (2019) also found that females face more stigma and disapproval if exhibiting characteristics that are stereotypically more male. As a result, females’ proficient compensatory behaviour may also be due, at least in part, to the societal pressures females face to conform to gender roles (Schuck et al., 2019), keeping them unidentified.
Dr. Bronwyn Wilson
References
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