Over fifty years ago, Leo Kanner described a symptom cluster that today is known as Autism Spectrum Disorder (or ASD). Initially thought as rare, twenty years later Kanner’s predecessor Victor Lotter estimated ASD at a prevalence of 4.5 per 10,000 children.
As the 1970s dawned and research continued, Lorna Wing and Judith Gould corroborated the Kanner symptomology at 5 per 10,000 children. But, in 1979, they published their own findings, called the Triad of Symptoms, which seemed to dovetail but not fully align with Kanner’s description. These symptoms included social interaction, social engagement, and imagination, and affected 15 of 10,000 children. By 1986, the total ASD spectrum (though not yet so called) was assumed to affect 20 in 10,000 children.
Asperger syndrome emerged in the early 2000s when Hans Asperger (today thought to be a problematic body of research) identified a subset of people with Kanner symptoms but improved language capabilities. Today, the full symptomology is thought of on a spectrum, with ASD being the umbrella covering all.
Girls left out
Kanner’s research estimated that boys outnumbered girls with ASD 4:1. However, Lorna Wing’s research came closer to a 2:1 disparity. Today’s estimates use a ration of 3:1, though the jury is still out.
Why?
In the theory of the mind, there are two mental spectrums: systems and empathy. Researchers Baron-Cohen argued that males tend toward systems thinking, while females tend toward empathy. As such, the symptom spread that was once thought of as Asperger’s (language and social adaptation) may mask female ASD symptoms. Their theory was called the Extreme Male Brain, and posited that a boy with extreme symptoms thinking (ie. autistic) was somehow ‘more male.’
Today, however, it is clear that there is no such thing as a ‘sexed brain.’ Time and again, no evidence has been found to suggest that brains have significant sex differences. As such, the Extreme Male Brain theory is frowned upon in research while still finding a social fit for its biases.
As a result of such biases, 80% of females remain undiagnosed at age 18.
Additionally, research shows that, while the total symptomology between males and females may not be all that different, girls seem to internalize their symptoms more. This ‘hiding’ is blamed for late diagnosis (more on that in a moment).
Diagnosis in adulthood
ASD is typically diagnosed (in boys) between ages 3-7. Clinicians look for developmental symptoms like avoiding eye contact, delayed speech, and trouble recognizing simple social cues.
As a result, clinicians are often unequipped to diagnose adults, especially women, as girls are likely to mask symptoms throughout life.
Yet, early diagnosis matters. Women who receive a late/adult diagnosis of ASD report negative effects to quality of life, feeling exhausted by ‘pretending to be normal’ for so long (aka. masking), and are significantly more likely to be sexually assulted. Early diagnosis provides improved support, access to services, and better overall mental health.
Resources for women with ASD
The National Autistic Society offers a great in-depth page regarding female symptomology, support, and further reading.
The Autistic and NonBinary Women Network (AWN) provided webinars and resources for women with ASD in the USA. Unfortunately, due to the current Trump administration, the future outlook and funding of the organization is uncertain.
“Thinking In Pictures” by Temple Grandin is a literary classic detailing the life of a woman with ASD (the associated film is also fantastic).
“Women and Girls with Autism Spectrum Disorder” by Sarah Hendrickx additionally offers a myriad of experiences from women with ASD.
This essay by Professor Gina Rippon in Aeon titled “Autism’s Missing Women” is an excellent read and includes further resources.
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