The Lost Girls: Gender in Autism and ADHD

April 4, 2019

 

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. And while these stereotypes are based on some common symptoms of these conditions, they leave a lot out. In fact, a lot of the time they’re blatantly misleading, causing overdiagnosis in some cases, and underdiagnosis in others - especially when it comes to women and girls.

 

This is because for the XX carrying among us, the symptoms of autism and ADHD actually tend to present differently. Studies in neuroimaging are starting to uncover just how sex factors into mental health, and it’s more prevalent than you might think. Girls with autism, for example, sometimes 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. “In my experience, autistic girls are just as obsessive as autistic boys,” says Kirsten, diagnosed at age 19, “they’re just obsessed with fantasy novels, or their favourite bands.”

 

As for ADHD, far from the hyperactivity that characterises the condition in boys, girls with ADHD are often more withdrawn; quietness, anxiety and trouble maintaining friendships are all common symptoms in girls, completely challenging the stereotype.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 want or need.

 

But why exactly did the male-oriented symptoms become the norm in medical diagnosis? It turns out that this is 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 differently in men and women in the first place. 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 sociological factors as a possible cause. 

 

This brings us to the “chameleon affect”. It’s not hard to see how from birth, girls are trained to copy social behaviours, and this 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 may be why among those on the autistic spectrum with high support needs, symptoms in boys and girls are expressed almost exactly the same - whereas, among people with minimal support needs, particularly for those with higher IQ, the ratio of men to women is as high as 10 to 1. 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.”

 

And that’s a problem. If we create an perpetuate a narrative that says 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. 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. 


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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 find it at the link below:
https://youtu.be/NwEH9Ui4HV8

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