Why Are Women So Underdiagnosed With Autism Spectrum Disorder?

By Rebecca de Broglio

Over 5.4 million Americans are diagnosed with autism spectrum disorder, also known as ASD. Autism, a neurodevelopmental disorder, is distinguished by an individual's struggles with social communication/interaction, repetitive behaviors, and restrictive interests.1 The cause of autism is still mostly unknown, however, there are hypotheses about environmental factors and genetics playing a role.2 For example, autism within my family is most likely genetic. My grandmother on my father’s side, my father, my little sister and I were all diagnosed with autism. My father was originally diagnosed with Asperger's Syndrome, however due to recent changes in diagnosis criteria, he is now considered a “Level 1” individual under autism spectrum disorder (ASD).3 I’ll touch more on that change in another article. However, despite millions of Americans diagnosed with ASD, there is a staggering gender gap in diagnoses. The ratio of boys diagnosed with ASD to girls diagnosed with ASD is a 4:1 ratio.4 While this huge gap may be attributed to men simply being more susceptible to having autism, many factors suggest that the answer is not that simple. So the question is: why? Why do so many autistic women go undiagnosed? There are a plethora of factors that play into answering this question and even then we still don’t have an exact answer. Through a quick overview of potential reasons behind the lack of autism diagnoses for women compared to men, I will combine my personal experiences with receiving my diagnosis and research to explore why women are often overlooked by ASD specialists. 

Receiving my diagnosis of Level 1 Autism (previously known as Asperger's Syndrome) was a year long process due to COVID-19 restrictions and my specialist having multiple family emergencies. Throughout my childhood I exhibited many symptoms of autism, but didn’t receive my diagnosis until I was a teenager. While growing up, I sensed there was something ineffably different about me. I never fit in and faced bullying throughout elementary school as a result of my “abnormal” behavior. I had passionate, but limited, interests. My obsession with literature was considered unusual, especially when considering I was seven years old and reading Moby Dick for enjoyment (God forbid!). As each generation becomes more technology dependent, children reading for enjoyment has dramatically decreased.5 It reached the point that I learned how to read while walking, staying up late with a dimmed nightlight, hiding books under my desk, and could not hold conversations unless it was related to my specific interests in literature and writing. This limited my social interactions drastically and I struggled connecting with my peers and building strong relationships outside of my family. 

Some of the other symptoms I struggled (and continue to struggle with) with includes (but aren’t limited to): suffering from panic attacks induced by sensory overstimulation, difficulty maintaining appropriate eye contact, low frustration levels that led to meltdowns, conversations being limited to my special interests, depression, and difficulty with communication from as young as three years old. I became an entirely different person at home; I was quiet and withdrawn rather than the energetic facade I presented at school. I often retreated to my room to recharge after long hours of masking. Despite many clear symptoms that I was suffering from some notable communication and development disorders, I was not diagnosed with ASD until I was 15 years old. I was given a provisional diagnosis by my therapist at 14, who then encouraged me to seek further testing and receive a formal diagnosis. If she had not recognized my symptoms, I would have gone throughout my whole life feeling insecure and confused about what exactly set me apart from others.

As I discussed in my personal experience with autism, the reason why many autistic women go undiagnosed is due to “masking.” Masking is like being a chameleon who works as a detective (insert cute graphic of a detective chameleon). It’s a method used by some autistic individuals to navigate and blend into neurotypical environments.6 Through detective-like observations and analyses, these individuals dissect social situations and cues to pick up things that can help them better blend in; kind of like a chameleon! This can include creating scripts for social situations, practicing facial expressions, deliberately copying others’ body language during conversation, and more. Many autistic women become proficient at masking their symptoms in order to fly under the radar.7 We also know that girls with autism who do not have intellectual disability tend to be diagnosed with ASD later in life due to their symptoms being more nuanced and hidden by masking methods.8

Another possible reason that girls are often underdiagnosed with ASD is because they present ASD symptoms in a way that doesn’t typically match with the diagnostic criteria. This is due to the fact that most autism assessments and criteria were based primarily off of boys, an example of how misogyny has affected multiple mental health disorder criteria and affected diagnostic rates. This is because until June 10, 1993, women were not required to be included in clinical research in the United States until Congress passed the NIH Revitalization Act.9 Not only does this possibly explain the disproportionate rates of ASD diagnoses in women, but many other mental health disorders as well. 

Gendered expectations for women is another factor that can explain the gender disparity in ASD diagnoses. There is more pressure for women to fit in, and certain social expectations for communication and behavior.10 This can be one of the motives behind masking in autistic women, as mimicking expected social behaviors, despite not fully understanding them, can lead to less issues in day-to-day life.11 A study exploring the gender differences in ASD diagnoses found that girls tend to exhibit fewer social interaction and restricted-repetitive behavior symptoms than boys.12 For example, these interests can be more gender or age appropriate. Special interests in pop stars, horses, classical literature (hey, that’s me!) may be considered more “normal” and the intensity and restiveness of these interests tend to be dismissed.13 As social limitations are one of the criteria for an ASD diagnosis, this can lead to many women being dismissed or misdiagnosed. These subtle differences in symptoms between boys and girls are unable to be picked up by current diagnostic instruments.12 

Diagnostic tools may also not be suitable for diagnosing women with ASD. When comparing clinician rated symptoms of ASD symptoms to self-reported ones, the accuracy increases. Due to gender bias and tools based on research on males, clinicians can underrate symptoms when compared to the individual self-reporting them.14 Additionally, a study showed that the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R) tend to be less sensitive to women and girls, leading to more misdiagnoses.12 

In conclusion, there are a multitude of factors that may be causing the current gender-based difference in ASD diagnoses. Ranging from nuanced social differences, masking, outdated diagnostic tools, male-based diagnostic criteria, and gendered expectations. Being able to understand these subtle differences and the process of an ASD diagnosis from the perspective of women and girls is crucial to closing this gender gap in diagnoses. The importance of diagnoses are clearcut, as they allow individuals to receive additional support and accommodations in important environments (such as work or school). We can improve this issue by directly crafting solutions for the problems at hand. This may include training specialists and healthcare providers on the differences of ASD-symptom presenting women, support pathways and resources to diagnosed women, and improved diagnostic processes and tools. If diagnosed with ASD earlier, I would have received accommodations for school and work much sooner, allowing me to succeed more in these environments. I would have had a better understanding of myself and resources to utilize earlier. I am extremely grateful to be able to have discovered what had left me feeling lost, confused, and isolated for so many years. I hope by improving the approach to ASD diagnoses, more women will be able to feel the satisfaction of understanding themselves on a deeper level, just as I have. 

REFERENCE LIST

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