Equality Matters: The Need for an Inclusive Diagnostic Process

Gender-based healthcare inequality remains a persistent barrier to improving the health of women and girls. As with many conditions, the diagnosis of Autism Spectrum Disorder (ASD) has long been influenced by a gender bias that predominantly focuses on cisgender men, leading to the underdiagnosis and misdiagnosis of girls and women on the spectrum.

According to a 2020 study of 61 subjects with ASD (22 females, 39 males), females displayed a substantially greater delay in both diagnosis of ASD and referral to mental health services, when compared to males [1]. As national and global health organizations work to identify and remediate gender-based health inequality, attention should be paid to ensuring that women and girls on the spectrum receive the support and understanding they need to thrive.

Why are women and girls under-treated?

One key reason is that diagnostic criteria are largely based on studies of boys with ASD, which may contribute to a gender bias in understanding the disorder. The problem goes beyond a bias in data-collection. Fundamental societal expectations and gender stereotypes contribute to the underdiagnosis of ASD in girls. Girls and women with Autism Spectrum Disorder (ASD) often present with subtler and more socially camouflaged symptoms compared to boys and men. Many studies have underscored the more complex presentation of autism in women, and a higher probability of women concealing their autistic symptoms [2].

The perception that girls are inherently more socially adept and empathetic can mask their difficulties in social interactions. Girls are also more likely than boys to internalize their struggles [3], which can lead to anxiety or depression - comorbid disorders that can attract primary focus during a clinical assessment, thereby diverting attention from underlying autistic traits. 

What can we do?

Creating a more inclusive and nuanced approach to ASD diagnosis requires a multi-faceted approach. Clinicians need updated diagnostic criteria that consider the diverse ways in which autism manifests across genders. This will require collaborating with individuals with lived experiences, to drive a conversation that fosters a more comprehensive understanding of how autism manifests across diverse populations - including but not limited to women and girls. Clinicians should employ a person-centered and holistic assessment approach, rather than relying solely on standardized tools, to create a more inclusive diagnostic process.

The repercussions of underdiagnosing ASD in girls are substantial and extend into adulthood. Without proper diagnosis and intervention, girls may face challenges in forming relationships, maintaining employment, and navigating independent living. Thankfully, there is growing awareness of the need - and mechanisms - to address the gender bias in ASD diagnosis and treatment.

References

[1] Gesi C, Migliarese G, Torriero S, Capellazzi M, Omboni AC, Cerveri G, Mencacci C. Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. Brain Sci. 2021 Jul 9;11(7):912. doi: 10.3390/brainsci11070912. PMID: 34356146; PMCID: PMC8306851.

[2] Tubío-Fungueiriño M., Cruz S., Sampaio A., Carracedo A., Fernández-Prieto M. Social camouflaging in females with autism spectrum disorder: A systematic review. J. Autism Dev. Disord. 2020 doi: 10.1007/s10803-020-04695

[3] Nolen-Hoeksema S, Girgus JS. The emergence of gender differences in depression during adolescence. Psychological Bulletin. 1994;115:424–443. doi: 10.1037/0033-2909.115.3.424.