Girls not aloud: gender bias in autism diagnoses

Why do girls with autistic spectrum disorders so often go undiagnosed as opposed to boys, asks Penny Gotch.

The idea of autism as a “boy thing” is extremely prevalent. In fact, one of the UK’s most notable researchers, Professor Simon Baron-Cohen, described the condition as a form of “extreme male brain”.

There’s a gender bias in autism. And it shows.

Male autistics are five times more likely to be diagnosed than female autistics. Many autistic women don’t get a diagnosis until middle age, often when their children show signs of an autistic spectrum disorder. And in the meantime, many receive misdiagnoses or diagnoses of co-morbid conditions: anxiety, depression, obsessive-compulsive disorder, borderline personality disorder or something else.

Why?

When I’m five years old, I have my first significant meltdown.

I have a precocious talent for reading; whereas my fellow students take one book home per week, I’m allowed to take a different book home every night.

It’s Monday and I want to read “The Rainbow Fish”. But somebody else gets to it before I can. I’ll have to wait a whole week to get my hands on it.

I become so distraught that I actually scare my teacher, a grown man. I cry until I fall asleep under a table.

It’s chalked up to a tantrum. Nothing’s wrong.

“Girls do not get ASD.”

Part of the problem is a self-fulfilling prophecy: if psychiatrists and psychologists believe that girls and women do not get ASD, they won’t test for it and autistic girls and women will continue to fly under the radar.

The rest of the problem lies in the way autism tends to present itself atypically in women. Rudy Simone, author of Aspergirls, observes that female autistics present differently: for example, they tend to be slightly more expressive, have less unusual obsessions, and are more open to talking about feelings.

Society expects women to be socially adept, so autistic girls must fake it.

Primary school

I’m bullied throughout primary school. I struggle with my peers. I’m academically gifted but socially lacking. Every school report says the same thing: “Penelope is intelligent but has difficulty making friends.”

I’m put in a neat convenient box in people’s minds. I’m the smart kid who would rather stay inside and read during play time, the sort of ten-year-old who would join a chess club, a child who’s better at lessons than at people.

I’m eloquent, creative and intellectual, but I’m not good at interacting with other children.

“Penelope is intelligent, but has difficulty making friends.”

And still nothing’s wrong.

Ladylike

Women are expected to be sociable, polite and compliant – “ladylike”. When autistic girls break these rules, they’re corrected for it: by the time they become autistic women, they’ve learned to blend.

It isn’t until later in life, when female autistics begin to burn out from faking social competency, that they realise that neurotypical people don’t struggle in the same way.

On top of that, anxiety and depression are already three times more common in women than in men. When you hear hoof-beats, you think horses, not zebras. When you think of socially isolated women, you think depression, not autism.

Nervous breakdown

I have a nervous breakdown over my GCSEs. My parents take me to a child psychiatrist who interviews me alone and with my parents. I’m fifteen years old.

He never suggests autism as a diagnosis. My parents have to ask him if he thinks I may be on the spectrum. They’ve been wondering for a while.

“I can categorically state that she does not have an autistic spectrum disorder,” he says.

I’m diagnosed with performance anxiety. They give me diazepam and send me to cognitive behavioural therapy. It helps to some extent, but not completely.

There is still nothing wrong.

Undiagnosed autistic women are forced to fake it.

Frequently, they are told that they can’t be autistic because they have a sense of humour or care about others.

Usually, they go through life pretending that nothing is wrong, that they are as neurotypical as the next person, until the burden gets too much and they meltdown.

Often, they walk around feeling like something is fundamentally wrong, like they are somehow broken or inadequate, with no words to describe why.

Undiagnosed autistic women are denied opportunities for support and accommodations at work and school, or for therapies aimed at their neurotype.

Undiagnosed autistic women suffer.

I have Asperger’s Syndrome…

I’m seventeen and transitioning from AS Levels to A2s. The process is stressful. I’m having panic attacks. Running out of class. My sixth form college arrange a meeting with my parents. They suggest I might be autistic.

I do a questionnaire online that agrees with my college. I’m referred by my GP to a specialist in autistic spectrum disorders in young people.

She speaks with me and with my parents. At the end, we ask if I’m on the spectrum.

She says yes. Most definitely. I have Asperger’s Syndrome.

Something is wrong. And something is right.

Everything falls into place.

I’m now twenty-five. I’ve been through cognitive behavioural therapy and counselling. I’ve had breakdowns and meltdowns. I’m on medication for depression and anxiety.

But things are better.

I’ve been to university. I’ve got a First Class Honours degree. I’m half-way through a Master’s. And none of that would have been possible without my diagnosis.

Autistic women are being let down by the professionals who should be diagnosing and protecting us, whether by accident or by design. We are screaming the question “Why are we different?” into the void and hearing only silence in return.

It’s time our cries were answered.

3 thoughts on “Girls not aloud: gender bias in autism diagnoses

  1. THIS is so critical and mirrors so many people’s experiences. We sought help for years, never quite figuring out what the problem was with our delightful daughter who had such trouble with transitions (from infancy) and meltdowns (long past the typical tantrum stage). At 15, she diagnosed herself after a quick internet search. Asperger’s was something we’d considered, but all the professionals said no, she was too social, too compliant at school. Finally, freshman year in high school, the anxiety reached fever-pitch and we demanded an evaluation, which we got after some arguing. The eval went far longer than we expected and she was finally diagnosed with PDD-NOS and suddenly all the pieces fit. She is now a freshman in college and doing beautifully. She has found a place of belonging. While she still struggles from time to time, she’s found support systems and knows how to advocate for herself. The greatest thing is that she sees her autism as a gift and is finally able to own it as such. so thank you for the validation. It’s been a journey. Much luck to you!

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  2. Such an interesting read and so well written, I too struggle with this and have never been diagnosed but can relate to so much of this, it is good to know that there is someone out there too and it is such a help knowing that there is hope. You have achieved so much and I can understand the struggle that it can be conforming to society. Best wishes to you x

    Like

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