"You're Just Kooky": Why Women With Autism Aren't Taken Seriously

"You're just a shy girl" was one of many things Dr Sarah Bargiela heard from autistic women who weren't diagnosed until later in life. "You're too poor at maths to be autistic" was another.

Autism has long been thought of as a "male" issue – a neurodevelopmental condition usually diagnosed in young boys which affects social interaction. More recently though, there is a growing worry that there are "thousands" of girls and women who are also going undiagnosed. As Professor Francesca Happé of King's College London told the Guardian in September: "We’ve overlooked autism in women and girls and I think there’s a real gender equality issue here." The rate of diagnoses of boys compared to girls is roughly 3:1.

The implications of this gender gap are real for those women affected by it. And it's something Dr Bargiela, a clinical psychologist, is working to address. After conducting her doctoral research into women and autism (you can read her paper on late-diagnosed women with autism here), she teamed up with illustrator Sophie Standing to help bring to life the experiences of the women she worked with. The result is Camouflage, a graphic novel aiming to provide visual context to the thoughts and words of autistic women. The women, depicted in Standing's colourful illustration style, describe how and why they had to wait so long to be diagnosed, the years they spent trying to "fit in", wondering why they were "different" from other girls. They speak candidly about how this isolation affected them as they became adults and how they are learning to embrace themselves, expand their communities and move forward.

Autism affects an estimated one in 100 people in the UK and while every person with autism is far from the same, it is generally accepted that it can cause "difficulty with social communication and interaction" and "repetitive behaviour, routines and activities". Many people with autism may have a special interest – a subject they know inside out. Ironically, this hindered the diagnosis of one of the women featured in Camouflage: "I was told 'all girls like ponies, that's not a special interest' which wasn't true. I knew far more about ponies than anyone else in the riding school."

For Dr Bargiela, the way we diagnose women with autism is flawed. "I was working with a 10-year-old girl who had lots of features of autism but when we used the diagnostic tools that are available, she didn’t score up," she explains. Even though it became very clear that this girl was autistic, she was unable to get her official diagnosis. This meant that she was unable to get extra support in school. "The diagnostic tools... a lot of them have been tested out first on large male populations with smaller numbers of girls so they’re actually much better at identifying autism in males and less sensitive to identifying autism in females.

How the two differ (and they are by no means scientifically defined) stems in large part from how we expect girls and boys to socialise themselves growing up. "Girls are much better at 'fitting in' and wanting to fit in," explains Dr Bargiela. "There’s real social motivation for girls to want to appear 'normal'." Society, she says, expects girls to behave in a certain way: be chatty, easy to communicate with. As a result, many autistic girls learn to live behind a mask as they adopt the social behaviour of their peers. One woman told Dr Bargiela about picking up an Irish accent at a Girl Guide camp that took a week to disappear, so strong was her urge to mimic what others did around her. Another woman told her that she would get so exhausted after presenting her "not me" face in social situations, she’d have to go and lie down in a room alone to recover.

This of course can play havoc with mental health. "[It can leave autistic women] really unsure of their identities," contributing to feelings of anxiety, Dr Bargiela explains. She says there are high levels of depression, which can come from the individual feeling like they don’t fit in. "It’s very isolating and can be very lonely. Being unsure of who [their] social circle is, [asking] 'Who can I have an honest conversation with?'... It’s important not to generalise women but from the women I interviewed, anxiety was pretty high and so were levels of depression."

<span class="copyright">Courtesy of Jessica Kingsley Publishers </span>
Courtesy of Jessica Kingsley Publishers

What becomes clear through Dr Bargiela's interviews is how much impact camouflaging has had on them. One woman recalls trying to "act normal" as she saw that it meant you were generally ignored by teachers. "Now, I look at stories online of kids who were going off the rail and think 'I should have just burned more cars'." When it comes to dating or intimate relationships, the struggle becomes more urgent. "In relationships it was difficult, because no one ever tells you the rules, or what is appropriate or not. I knew I was taken advantage of many times," one woman told Dr Bargiela. Another remembers conceding to everything in a relationship. "There was a sense of appearing, 'please, appease and apologise'," she recalled. Sex, of course, complicates things further. "I almost feel pressured by society to have sex because you get told this is what is expected of you to be a good girlfriend and you think, 'If I don’t do it, then I am not fulfilling my duties.'"

"It’s the perfect storm," explains Dr Bargiela. "Autistic women find it harder in social situations but that doesn’t mean they don’t want to fit in. If you’ve constantly been rejected and then someone is showing you interest, that’s a nice feeling on a very basic human level." Unfortunately, not every person showing romantic interest in a woman has that woman's best interests at heart. Generally creepy behaviour from potential partners is a minefield. Everyone is struggling to understand and recognise red flags as they evolve and progress in the digital age, and the #MeToo movement has shone a light on a host of creepy actions towards women that were, up until now, thought of as "just the way things are". It's hard for all women – both neurotypical and neuroatypical – but for an autistic woman, who may not have a social circle around her to protect her, or be unsure in her own identity due to camouflaging, it could be impossible. Dr Bargiela recommends The Independent Woman's Handbook for Super Safe Living on the Autistic Spectrum by Robyn Steward. "It’s really good for things like, 'It's okay to say no, it doesn’t make you a bad girlfriend if you don’t want sex'."

In the last few years, there's been a huge uptick in the presentation of autism in popular culture; books like The Curious Incident of the Dog in the Night-Time and The Rosie Project, and TV shows like Netflix's Atypical have done wonders to further the conversation around autism. But few atypical female heroes have been available. Sofia Helin, the actor who played Saga in the brilliant Danish/Swedish noir The Bridge, has spoken often in interviews of women who approached her to let her know that it was her performance of a woman with Asperger's syndrome – which is on the autism spectrum – that led them to realise that they had the condition. So what would Dr Bargiela recommend if reading Camouflage throws up some flickers of recognition about your identity? The next steps, she says, are entirely in your hands. "Everyone is so different," she says. "Do you feel like a diagnosis will help you understand yourself? Do you feel like a diagnosis will help your friends and family understand you better? Or that you will get better support in your employment? If that’s the case, then definitely pursue one if you think it would make you happy."

<span class="copyright">Courtesy of Jessica Kingsley Publishers </span>
Courtesy of Jessica Kingsley Publishers

For many of the women she interviewed, it was embracing their special interest that helped them form communities or find solace. "I'm really into biplanes and vintage aircrafts," one woman said. "It all started from an idea for a story I wanted to write and illustrate about a female chartered pilot... Then I wanted to learn how to draw a biplane. I've now learnt how to identify planes by sight, having read about how they were used, and also got really into WWI... Now every time I see a biplane it brings me so much joy." Others cited interests in crafting, archaeology, music and boats.

"Maybe you’ll be happier knowing that this is who you are," Dr Bargiela muses. "Maybe it will help you understand yourself better – or give you some terminology to explain [your thoughts]." All she hopes is that Camouflage provides the vocabulary for women to be able to say: "I recognise myself in this and I want to be able to speak out about it."

Camouflage: The Hidden Lives of Autistic Women by Dr Sarah Bargiela, art by Sophie Standing, is out now from Jessica Kingsley Publishers.

Like what you see? How about some more R29 goodness, right here?

Instagram Fasting: The Low-Stress Way To Stop Social Media Making You Sad

Growing Up Blind Didn't Spare Me From Body Dysmorphia, It Made It Worse

I'm 28 & My Best Friend Is 100 Years Old