Why Are So Many Autistic Women Overlooked?

Autism Spectrum Disorder (ASD) is diagnosed more frequently in males, but research suggests many autistic women go unrecognised. Differences in how ASD presents in females, along with outdated diagnostic criteria, contribute to missed or delayed diagnoses. So, what needs to change?

ASD is a neurodevelopmental condition that affects how individuals communicate, interact, and experience the world. It is called a spectrum disorder because its characteristics vary widely. Some individuals may be nonverbal yet possess exceptional cognitive abilities, while others may be highly articulate but face intellectual or social challenges.

ASD is diagnosed three times more often in males than females (3:1). However, research suggests this disparity may be due to underdiagnosis rather than actual prevalence, with some studies indicating the true ratio could be closer to 1:1. Many autistic females exhibit fewer outward signs of ASD or develop coping strategies to mask their symptoms in social settings, leading to misdiagnosis or underdiagnosis. 

How ASD Presents Differently in Women and Girls

The diagnostic criteria for ASD are largely based on how ASD presents in males, overlooking potential gender differences. However, research shows that autistic women and girls often exhibit different characteristics. 

To better understand this, let’s compare key diagnostic criteria for ASD with how it commonly presents in females. 

One of the core diagnostic traits for ASD is repetitive behaviours, including stimming - self-soothing movements like hand-flapping, rocking, or fidgeting. While these behaviours are more visibly observed in autistic men, many autistic women learn to ‘mask’ or modify these behaviours - consciously or unconsciously - to avoid standing out. This masking can make their ASD less noticeable to clinicians, delaying or preventing diagnosis. 

Another criterion is social communication difficulties. Although ASD is often associated with social withdrawal, many autistic women desire friendships and work hard to maintain them. They may mimic the social behaviours of their neurotypical peers, such as maintaining eye contact or using rehearsed responses, to navigate interactions. Despite these efforts, they may still struggle with the deeper nuances of social interaction, but their ability to appear socially engaged can contribute to underdiagnosis. 

ASD is also characterised by intense, highly focussed interests. While autistic men might develop deep fascinations with topics such as  trains, numbers, or mechanical systems, women with ASD often develop deep but socially accepted interests, such as animals, literature, or celebrities. Since these passions align more closely with neurotypical interests, they are less likely to be flagged as a sign of ASD, further contributing to underdiagnosis. 

By understanding how ASD manifests differently in women and girls,, we can improve diagnostic accuracy and ensure better support for those who need it. Recognising these differences is crucial for bridging the gender gap in autism diagnosis and fostering a more inclusive approach to ASD awareness and intervention.

The Consequences of Underdiagnosis and Misdiagnosis

The failure to recognise ASD in women and girls has serious consequences. Many autistic women are first misdiagnosed with anxiety, depression, or eating disorders before ASD is even considered. This not only delays access to appropriate support but can also lead to feelings of frustration, isolation, and confusion for those who feel fundamentally different but lack an explanation.  

A study found that many women with ASD receive a diagnosis only in adulthood, often after experiencing burnout from years of masking their traits. This can contribute to mental health struggles, employment difficulties, and challenges in relationships.

What Needs to Change?

To improve ASD diagnosis and support for women and girls, several key steps must be taken:

1. Updating diagnostic criteria - current assessment tools must be revised to reflect gender differences in ASD presentation.

2. Training for clinicians - healthcare professionals need better education on recognising ASD in females to facilitate earlier diagnosis.

3. Raising awareness - increasing public understanding of how ASD manifests in women and girls can help individuals seek diagnosis and support earlier in life.

   
   

By acknowledging these differences and advocating for a more inclusive understanding of ASD, we can work toward ensuring that women and girls receive the recognition, support, and accommodations they deserve. 

This World Autism Awareness Day, let’s commit to breaking down the barriers that prevent so many from being seen and understood. 

References:

• Arlington, V. A., & American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. American Psychiatric Association, 5, 612-613. 

• Belcher, H. L., Morein-Zamir, S., Stagg, S. D., & Ford, R. M. (2023). Shining a Light on a Hidden Population: Social Functioning and Mental Health in Women Reporting Autistic Traits But Lacking Diagnosis. Journal of autism and developmental disorders, 53(8), 3118–3132. 

• Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474.  

• National Institute of Mental Health. (2024, February). Autism spectrum disorder. National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

• Odermatt, S. D., Möhring, W., Grieder, S., & Grob, A. (2022). Cognitive and Developmental Functions in Autistic and Non-Autistic Children and Adolescents: Evidence from the Intelligence and Development Scales-2. Journal of Intelligence, 10(4), 112. 

• O'Nions, E., Petersen, I., Buckman, J. E. J., Charlton, R., Cooper, C., Corbett, A., Happé, F., Manthorpe, J., Richards, M., Saunders, R., Zanker, C., Mandy, W., & Stott, J. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet regional health. Europe, 29, 100626. 

• Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 53(2), 237-257.

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This article was written by Freya Wardell and edited by Rebecca Pope, with graphics produced by Ginevra Sperandio. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.