Authored by AIF Fellow Padma Samhita Vadapalli
For years now, scientists and researchers have noticed a strange phenomenon: a higher number of men tend to be diagnosed with certain neurodivergent conditions when compared to women. What does this imply? Are women really less likely to develop these conditions? Initially, biological theories about the differences between the male and female brains were utilized to explain this discrepancy (Van Eijk, et al. 2021). However, increasing evidence suggests that this may not necessarily be the case (Hull, et al. 2020).
The truth is that women with neurodivergent traits may simply be hidden from our view. Due to an inadequate amount of representation and inclusion in research, young neurodivergent girls tend to find themselves lost and in search of an answer that often does not find them.
WHERE DO ALL THE “LOST GIRLS” GO?
Let us consider Autism Spectrum Disorder, otherwise known as ASD. Evidence suggests that a large number of women with autism are overlooked and remain under-diagnosed by professionals, denying them the access to the right kind of resources, services and information.
Historically, scientists and clinicians had based their research on the assumption that ASD is a disorder which affects males more predominantly due to a greater number of diagnosed men. Previous studies have found that there is a 4:1 male to female diagnosis ratio, attributed to differences in the physicochemical make-up of the human brain. However, recent research demonstrates that these findings may be a result of gender bias within the ASD research sector. According to William Mandy, a psychologist from University College London, most clinical research studies do not include a balanced ratio of male and female patients. In fact, this ratio is so skewed that there are often 5 to 6 male patients for every female patient.
Due to this disparity, researchers have been unable to identify the specific ASD traits which are unique to female patients, as they tend to manifest themselves in behaviors which are quite different from those of their male counterparts. For example, women with ASD exhibit a higher frequency of “masking” behaviors. Masking refers to camouflaging behaviors where young girls with ASD tend to mimic the social behaviors of their peers, in an attempt to fit in (Hull, et al. 2017) . They also exhibit greater emotional control, and often do not isolate themselves as characteristic in males with ASD. Nevertheless, females with ASD still struggle with communication and social skills, which can severely impact their mental well-being. This can lead to a cascade effect which further impacts employment and education.
A similar problem persists in the case of Attention Deficit Hyperactivity Disorder (ADHD). As seen in ASD research, research focusing on ADHD in women has been historically underfunded. In fact, women were not sufficiently included in ADHD studies globally, until the late 1990s. Additionally, long term studies monitoring ADHD in women did not materialize until the 2000s.
ADHD presents itself differently in women than it does in men. Women with ADHD tend to be more likely to present symptoms related to inattentive ADHD , rather than the hyperactivity and impulsivity which are typically associated with the disorder. They also utilize masking strategies to a greater extent, when compared to males with ADHD. In addition, societal gender stereotypes can lead to girls with ADHD being dismissed as daydreamers, shy, overly sensitive, or even just “quirky”. In many cultures, there is also a high amount of stigma when it comes to the diagnosis of a girl child. Families often remain in denial and neglect any observed symptoms in order to avoid the label of neurodivergence.
These girls often find themselves feeling isolated, and misunderstood by the system around them which fails to help them.
THE NEED FOR INTERSECTIONAL RESEARCH
Due to diagnostic bias, women exhibiting neurodivergent traits are overlooked by current intervention systems, or are mistakenly diagnosed with other disorders instead. This can be detrimental for young patients seeking support, and prevent them from accessing the resources required by their condition. When we speak of diversity, we often forget how intersectionality comes into play. Certain social identities such as gender, race and socio-economic status cut across almost every sphere of life. It is crucial to remember the importance of intersectionality in order to develop more inclusive solutions which can address the needs of people with varying privileges and histories.
A strategy in order to ensure the development of more equitable interventions, is ensuring diversity of subjects in data collection. Including a higher number of women and non-binary individuals in research studies can help us further understand the differences and similarities in traits among diverse groups of people. Diagnostic bias arises from skewed datasets and an incomplete understanding of neurodivergence and its manifestation in different individuals. In order to account for this, inclusivity must be incorporated into research, by conducting studies focused on neurodivergent individuals from a wide range of gender identities, locations, economic classes, castes, races, abilities and sexualities. Identity and neurodivergence are intricately related, due to the interplay of environment, society and genetics. Understanding this relationship can enable us to gain a more multidimensional understanding of neurodiverse conditions, allowing us to identify and develop adequate interventions for individuals in need.
SOURCES:
Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306–317 (2020). https://doi.org/10.1007/s40489-020-00197-9
Hull L, Petrides KV, Allison C, Smith P, Baron-Cohen S, Lai MC, Mandy W. “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. J Autism Dev Disord. 2017 Aug;47(8):2519-2534. doi: 10.1007/s10803-017-3166-5. PMID: 28527095; PMCID: PMC5509825.
van Eijk L, Zietsch BP. Testing the extreme male brain hypothesis: Is autism spectrum disorder associated with a more male-typical brain? Autism Res. 2021 Aug;14(8):1597-1608. doi: 10.1002/aur.2537. Epub 2021 May 19. PMID: 34008924; PMCID: PMC8328919.
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