Autism Awareness Special Edition: The Invisible End of the Spectrum - Girls and Women

April 3, 2022 Megan Anna Neff

April marks Autism Awareness Month, and this year, I'm launching a "Special Edition" series dedicated to highlighting the less recognized and often overlooked aspects of autism. While some argue that the time for awareness has passed in favor of acceptance, I believe the journey towards true acceptance requires ongoing awareness—especially for underrepresented groups. This mini-series aims to bring these groups into the spotlight, beginning with girls and women. In subsequent weeks, we will explore the experiences of the Trans community and delve into the discrepancies in diagnosis within BIPOC communities.

The Underdiagnosis of Girls and Women

Autism has historically been viewed through a male-centric lens, leading to a significant gap in the diagnosis and understanding of Autistic females. It turns out the gap is not because autism is less common in females, but rather due to bias in research in medicine. Several gaps contribute to this such as:

Diagnostic tools normed primarily on males
A majority of autism research focused on males
Cultural myths and stereotypes reinforcing autism as a "boys' condition"

The Real Ratio: Challenging Old Statistics

A pivotal study by McCrossin (2022) challenges the often-cited male-to-female autism ratio of 4:1. Through mathematical projections that account for diagnostic bias, McCrossin suggests the true ratio leans towards 3:4, indicating a staggering 80% of autistic females remain undiagnosed by the age of 18. This revelation underscores the urgent need to reassess our diagnostic criteria and approach to research.

Brain Differences and Impact

Recent studies, including those by Supekar et al. (2022), have begun to illuminate sex-specific brain differences between autistic females and males. These findings indicate that autism affects different brain regions in females, with impacts on:

Fine motor skills
Executive functioning
Emotional regulation

Interestingly, these differences often result in less pronounced social-communication challenges, contrasting with the prevailing stereotypes of autism. Females are also more likely to have more intense sensory sensitivities than Autistic males.

Cultural Blending and Masking

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Autistic girls and women frequently go undetected due to Autistic masking and the tendency to possess interests that culturally blend in. While our special interests may exhibit atypical intensity, the subjects themselves—ranging from humanitarianism and religion to animals and pop culture—often don't deviate from the cultural norms. This phenomenon of "cultural blending" renders our autism less apparent than those with more atypical interests. Moreover, the tendency to mask Autistic traits also leads to reduced identification of Autistic girls and women (Hull et al., 2020).

Increased Risks and Co-occurring Conditions

The experience of autistic girls and women is fraught with challenges, which is only exacerbated when we don’t receive accurate identification. For example we have:

Higher rates of victimization. One study found that 9 in 10 Autistic females had been sexually victimized (Cazalis et al., 2022)
Increased likelihood of internalizing disorders (anxiety, depression, eating disorders, self-harm etc.)
Greater risk of co-occurring physical conditions (e.g., endocrine and reproductive health issues, epilepsy, autoimmune diseases) (Kassee et al., 2020)

Pathways to Better Diagnosis and Understanding

Recognizing the need for more inclusive diagnostic tools, Brown and Attwood, among others, have developed an autism assessment normed on girls and non-binary individuals. Additionally, the CAT-Q offers insights into the extent of social masking, which can help identify Autistic girls and women who mask.

Insights of a Neurodivergent Clinician