• Madeleine Ryan reflects on some of the misconceptions people have about girls and women on the autism spectrum. (Photo: Hector H MacKenzie)
Up until recently, the behavioural indicators for autism have been based on criteria sourced from boys and men.
By
Madeleine Ryan

27 Feb 2020 - 8:52 AM  UPDATED 28 Feb 2020 - 11:19 AM

I was diagnosed as autistic when I was 28 after being in therapy for more than a decade. I saw three different therapists and none of them ever mentioned autism. They diagnosed me as depressed, anxious, manic, and told me that I was suffering from adjustment disorders, and eating disorders.

Thankfully, I am my self interest. I became close friends with two magical women on the spectrum, and they pointed me in the direction of autism. I did my research. It was a rocky road to an official diagnosis, and there was hardly any information out there to guide me.

The reason being that up until recently, the behavioural indicators for autism have been based on criteria sourced from boys and men. Girls are less likely to get diagnosed. In a Danish study conducted in 1995, researchers found there was one autistic girl to every eight boys. But a more recent study by University College London has found it’s closer to one girl to every three boys. The researchers even concluded there appears to be a diagnostic gender bias, meaning that girls who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis.

So here’s a bit more about what people don’t know about autistic women**:

** I say ‘autistic' rather than ‘I have autism’ because I see autism as the way my brain is wired. My perspective and sense of identity is shaped by it. However, others prefer people-first terminology. It’s an individual thing.

Autistic Girls and Women Are More Likely to Mask Their Autistic Nature

Autistic girls and women are stealth.

We go out of way to mimic neurotypical social cues and to fit in. Which doesn’t mean we understand these cues, or that we’re empowered by hiding what we truly think, feel, and sense in social situations. Au contraire. The suicide rate in autistic people who go out of their way to mask or ‘camouflage’ is high.

Internalising everything creates anxiety, depression, and disordered eating patterns. It’s been estimated that 20 per cent of women diagnosed with eating disorders are autistic.

It’s been estimated that twenty percent of women diagnosed with eating disorders are autistic.

So while a little girl who implodes rather than explodes might be easier for friends and family to deal with, doing so doesn’t support her mental or physical wellbeing. And a desire to hide meltdowns - ensuring that they take place in the privacy of a bedroom, bathroom, or car - can be isolating and debilitating.

Because autistic girls and women are also more likely to persevere in social situations which make them feel uncomfortable, while guys on the spectrum are more likely to quietly observe or walk away from what makes them feel uneasy. We withstand the difficulties and want to seem ok - even when we’re not.

We Have More “Socially Acceptable” Interests and Repetitive Behaviours

So, apparently, boys and men on the spectrum are busy studying engineering and collecting trains and stamps and bus timetables and avoiding eye contact with everyone and melting down in public, while us girls are lining up perfume bottles and books and different sized seashells and melting down in toilet cubicles and forcing eye contact with everyone.

Moreover, the rituals and routines we latch onto are generally ones that others expect or approve of...

Some say we’re more drawn to the arts, to nature, and to animals. However, the defining factor is usually the nature of the relationship that we have to something, whether it is artistic or not. That said, on Tony Attwood’s website, he observes how the work of Shakespeare really seems to resonate with autistic girls and women because of its inherent rhythm - and this has absolutely, 110%, been my experience with The Bard.

Moreover, the rituals and routines we latch onto are generally ones that others expect or approve of, such as: exercising a lot, obsessing over food, being particular** about what we wear, and how we do our hair.

** In my case, being “particular” can encompass being adamant about not wearing deodorant because it’s cold and wet; and not wearing a bra or undies because they don’t make sense; and not brushing my hair because it’s too much to deal with today and, like, who cares if I don’t? Like, seriously, who is directly affected by my not brushing my hair? Etc.

Autistic Girls and Women Are… Amazing

The idea that we’re using a lot of our energy to try and be someone or something that we’re not is such a waste. The world has no idea what it has been missing. Autistic girls and women have so much to offer. We’re intelligent, sensitive and dynamic. We approach problem solving and socialising in multidimensional and creative ways.

Perhaps our amazingness has a habit of diverting people away from the idea that there’s anything inherently ‘wrong’ or ’disabled’ or ‘different’ about us. Because the truth is that we’re very capable, we have a lot to contribute - and we’re just getting started.

Madeleine Ryan’s debut literary novel A Room Called Earth is being published around the world in 2020. She doesn’t have social media, so for more information please sign up for her newsletter.

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