Why autistic women and girls often go undiagnosed

Autism Spectrum Disorder (ASD) has long been associated with boys. This misconception, fueled by outdated research and societal biases, leads to a concerning reality: autistic girls are diagnosed four times less often than autistic boys according to a 2017 study by  the Autism Research Centre [Baron-Cohen et al., 2017].  This disparity has significant consequences, delaying access to crucial support and hindering their ability to thrive. Understanding the reasons behind this underdiagnosis or misdiagnosis is critical to providing equitable and inclusive healthcare systems for autistic women and girls.

Masking the difference:

One key factor is "social camouflaging." Driven by a strong desire to connect, autistic women and girls develop exceptional abilities to mimic social behaviors. Imagine this: you spend your life feeling like a chameleon, meticulously blending into your surroundings. You observe social interactions, mimicking what seems "normal" even though it feels foreign. This constant performance can be exhausting, but it's the only way you know how to navigate a world that doesn't quite make sense. That, in a nutshell, is what life can be like for many autistic women and girls. Research by Dr. Sarah Cassidy suggests that autistic girls are more likely to engage in social camouflaging than boys, further complicating diagnosis.

Beyond the Stereotypes:

Traditional diagnostic tools, shaped by research primarily focused on autistic boys, often miss the diverse ways autism presents in people across the gender spectrum.  These tools might emphasize restricted interests in specific topics or repetitive behaviors like flapping hands. However, autistic individuals might have a wide range of interests, and repetitive behaviors can manifest in more subtle ways like intense focus on routines or organization. This mismatch between symptom presentation and diagnostic criteria, coupled with societal conditioning that leads girls and women to internalize their struggles, can lead to missed diagnoses.

The Internal Storm:

Many autistic women experience their challenges internally. Sensory overload might manifest as anxiety or meltdowns behind closed doors. Social difficulties can translate into depression or a constant feeling of social awkwardness rather than outward outbursts. This internalization makes it difficult for others to recognize the underlying cause of these struggles, further delaying diagnosis. A study published in the Journal of Child Psychology and Psychiatry [Lai et al., 2011] found that autistic girls are more likely to experience internalizing symptoms like anxiety and depression compared to autistic boys.

This underdiagnosis has a profound impact on the lives of autistic women. Studies suggest they are more likely to experience mental health challenges, unemployment, and social isolation.

The Impact of a Delayed Diagnosis:

A late or missed diagnosis has significant consequences. We might struggle with social relationships, navigating social situations, experience chronic anxiety, or have difficulty managing daily routines. This can lead to feelings of isolation, depression, being misunderstood, inadequacy, low self-esteem, and a sense of not belonging.

Research published in the Journal of Autism and Developmental Disorders [Chown et al., 2019] found autistic women are twice as likely to report experiencing an eating disorder compared to neurotypical women.

 Difficulties with social communication and challenges adapting to workplace environments can make it difficult for autistic women to find and maintain employment. A study by the Autism Self Advocacy Network [Autism Self Advocacy Network] found that autistic adults are four times more likely to be unemployed compared to the general population.

Breaking the Cycle:

So, what can be done?

Awareness is key: Learn about the diverse presentations of autism in females. Organizations like the Autistic Self Advocacy Network [ASAN] and IHeartAspies provide excellent resources.

Advocate for Inclusive Diagnostic Tools: Research efforts should focus on understanding autism across the gender spectrum. This can lead to more comprehensive diagnostic tools that capture the diverse experiences of autistic women and girls.

Promote Self-Advocacy: Encourage girls and women who suspect they might be autistic to seek evaluation and support. Resources from organizations like the Autistic Women's Network [AWN] can be helpful in this journey.

Challenge Societal Expectations: Break down stereotypes surrounding autism, and promote understanding of how it can manifest differently in women and girls.