The Lost Girls: How Women With Autism Are Hurt by Sexist Science
We’d like to think that in today’s world, gender bias in science is all but eradicated. Science is objective, after all, it’s cold hard facts — what could be sexist about data? But it turns out to be a whole lot more complicated than that, especially when we look at the history of women with autism and ADHD.
When we talk about developmental disabilities like autism and ADHD, we tend to associate them with men. Autism has been personified by pop culture as a socially awkward, hyper-intelligent guy — think Sheldon from Big Bang Theory. ADHD is a hyperactive boy at the back of the classroom, who just can’t for the life of him sit still.
However, while those stereotypes are based on some common symptoms of these conditions, they leave a lot out — as most stereotypes do. In fact, a lot of the time they’re blatantly misleading, causing overdiagnosis in some cases, and underdiagnosis in others. This is especially true when it comes to the under-diagnosis of women and girls.
This is because — for the XX carriers among us — the symptoms of autism and ADHD actually tend to present differently. Studies in neuroimaging are starting to uncover just how one’s sex factors into their mental health, and it’s more prevalent than you might think.
Girls with autism, for example, tend to exhibit better language development, as opposed to boys with autism who often develop linguistic skills more slowly. Some of them also don’t have the specific and fixated interests that boys with autism tend to. Or, when they do, their interests are more ‘socially acceptable,’ and may be overlooked.
As for ADHD, far from the hyperactivity that characterises the condition in boys, girls with ADHD are often more withdrawn; quietness, anxiety and trouble maintaining friendships are all common symptoms in girls, completely challenging the stereotype. And because they don’t fit the dominant idea of autism and ADHD, girls often go undiagnosed in childhood, leaving them confused about why they don’t think or act the same way everyone else seems to know how to, unable to access the support they may need.
But why exactly did the male-oriented symptoms become the norm in medical diagnosis?
It turns out to be purely a product of gender bias in scientific studies. Early studies of autism were conducted mostly, if not only, on male subjects, and even today metastudies show only 0.5% of studies are conducted on autism in women. This has created an extreme bias in diagnosis, even among psychiatric and medical professionals, with the idea that “autism/ADHD is a male condition” remaining a common misconception.
That still leaves the question of why autism and ADHD present themselves differently in men and women in the first place. The answer turns out not to be so simple. Initially, scientists thought a gene for autism might be carried on the X chromosome, meaning it would show up in boys but be compensated for by the unaffected second X chromosome in girls. No evidence for this theory was found, and so science has had to move on to the sociological factors as a possible cause.
This brings us to the “chameleon affect”. Recent studies focused on girls with autism identify ‘increased imitations skills’ to be one of the defining traits of girls on the spectrum. This seems to align with the experiences of women with autism: Sybelle, diagnosed at 27, says “When people find out [I have autism], they always say, ‘But you don’t act autistic!’ And I want to say, you know, I had to go through a lot of stuff to learn how to mask my idiosyncrasies.”
The ‘chameleon effect’’ may hold the key to why it’s often harder to diagnose autism and ADHD in girls and women. The theory is that girls with these conditions train themselves to copy the behaviours of others, hiding their natural responses to blend in with those around them.
This would also seem to explain why for those on the autism spectrum with high support needs, symptoms in boys and girls are expressed almost exactly the same — whereas, among those with minimal support needs, particularly for those with a higher IQ, the ratio of men to women is as high as 10 to 1.
And that’s a problem. If we create an perpetuate the narrative that autism and ADHD present themselves in one, male-oriented way, young women with these developmental conditions will continue to be denied the diagnoses that might help them better understand themselves and those around them.
Take comedian Hannah Gadsby, who was diagnosed with autism while writing her breakout stand-up show “Nanette” (which you can — and definitely should — stream on Netflix). In the aftermath of her sudden rise to fame, Gadsby opened up about her experience with autism, and the consequences of being diagnosed: “Having the framework of autism boils down to not looking out to the world to see how I should exist, but knowing I don’t actually have to be social.”
And, as she told The Guardian, the diagnosis helped her realise why the “noise and moving around” aspects of being a comedian just weren’t for her. At the same time, she says her ability to pick up on patterns — something she attributes to her “spectrum brain”- is part of what allowed her to write “Nanette” in the first place.
This is why diagnosis is so important. It helps people understand themselves, their challenges and their strengths. It helps people make decisions — whether it be in relationships, career, or life in general — that best suit how they interact with the world, rather than questioning themselves and trying to change themselves to fit ‘the norm.’ In Gadsby’s case, having a diagnosis allowed her to adapt her ‘workplace’ so that she can perform without experiencing the “distressing distraction” of seeing phone screens in the audience.
It’s an incredibly isolating thing to think and act differently to others, and not know why. It might be just one of the reasons that anxiety, depression and low self-esteem are so common amongst girls with ADHD and autism. That’s something we need to address, because in a world built to privilege the neurotypical, no one deserves to be left behind.
For anyone who’s curious about the female experience of autism — or for any autistic girls out there who can relate — the Iris YouTube channel has an excellent video called What Women With Autism Want You to Know. You can watch it below:
Madeleine is a regular columnist for the Minds in Tune blog. She specialises in writing about the discourses that shape our society, how we live, and our mental wellbeing in particular. Previously, she’s written about how Facetune could be damaging our mental wellbeing.
Keep up with the blog to read more of Madeleine’s articles, and catch new episodes of Minds in Tune every Saturday in your preferred podcast app. For more Minds in Tune content, check out our posts from @mindsintune on Instagram.
The Lost Girls: How Women With Autism Are Hurt by Sexist Science
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