Where Are All The Autistic Women And Girls?
One in 100 people are diagnosed as being on the autistic spectrum, but there's a perception that it's a predominantly "male" condition.
“I am quite eloquent, I can chat to people – my job is all about communication and meeting new people every day,” says Emily Swiatek, 29, who was diagnosed with autism spectrum disorder (ASD) last year. “When you look at those surface points, I think [the diagnosis] can be quite hard to understand.”
One in 100 people in the UK have been diagnosed with a form of autism, a lifelong developmental condition that affects social interaction, communication, interests, and behaviour to varying degrees.
Swiatek's experience of autism contrasts strongly with the common perception of the typical autistic person as an introverted young boy, a perception that is now slowly – too slowly, according to campaigners – beginning to change.
Before her autism diagnosis, Swiatek accumulated a “rubbish bin” of different diagnosed conditions, including borderline personality disorder, an eating disorder, and anxiety. “There was a point where I had about 10 different diagnoses on my file,” she told BuzzFeed News.
Until the signs were finally picked up, Swiatek, who lives in London and has worked as an employment training consultant for an autism charity for four years, was among an unknown number of women in the UK left struggling, sometimes personally and sometimes professionally, without a name for the challenges they face.
Autism is thought to be as much as five times more common in men than women, though new thinking is gradually challenging the level of gender disparity. The ratio could be as close as 2 to 1.
The NHS released a report on autism at the beginning of this year that for the first time discusses addressing the specific needs of autistic women. But Carol Povey of the National Autistic Society (NAS), who contributed to the report, says many in the medical profession still fail to recognise the condition in women.
“I think there is still a long way to go,” Povey says. “For your average GP I think they still have this picture of autism being a young child and a boy.”
The first diagnosed case of autism was Donald Gray Triplett in the United States. Known as “Donald T” or “Case 1”, he was described in a 1943 article announcing the discovery of a then unknown condition that would come to be understood as autism.
At the age of 3, Triplett – who's now 83 and lives in a town called Forest, Mississippi – was placed in a state-run facility 50 miles from his parents after doctors expressed confusion over his behaviour, including an inability to feed himself.
Triplett was there for a year before his concerned parents, worried by his physical deterioration, removed him. Doctors had few suggestions for what could be at the heart of the issue. The facility director’s assessment was that he probably suffered from “some glandular disease”.
It was through Triplett’s family’s perseverance – helped by their finances and privileged position near the top of Southern US society – that eventually brought the firstborn son of an established banking family to the attention of Johns Hopkins Hospital professor Dr Leo Kanner.
Triplett’s father, a lawyer, sent Kanner a 33-page list describing his son’s conditions. Initially described as “obsessive” by the eminent psychiatrist, the document is commonly recognised as one of the first detailed listing of autism symptoms.
By 1943, Kanner had pulled together another 10 case studies and published in the journal The Nervous Child suggestions for a new condition he called “autistic disturbance of affective contact”. Of the 11 children in the study, only three were girls.
At around the same time, a scientist in Germany was also examining children with similar symptoms. In 1944, Hans Asperger described a “milder” form he had observed in highly intelligent boys.
Both men ascribed “autism” (drawn from the Greek word for self, autòs) to the children under their care, but Asperger categorised his findings, Asperger's syndrome, as “an extreme variant of the male character” – a finding he later revised based on clinical evidence.
Richard Mills, lead researcher of Research Autism UK, has seen the issue of undiagnosed women on the spectrum come up “again and again” over the years.
Mills, who previously worked for the NAS, says he became aware of the extent of the problem after conducting a study of women in secure hospital units in the early 2000s. “We found an overrepresentation of undiagnosed autistic women,” he says. “That got us thinking, How many had been missed?”
In 2010, Mills and colleagues put on the first conference specifically for women on the spectrum. “We could have filled it 10 times over,” he says, “it was unbelievable.”
Clinicians and experts are only just beginning to realise how differently girls on the spectrum can present compared to boys and how that impacts getting a diagnosis. Mills won’t be drawn on the medical profession, but notes that GPs are often simply “not looking for autism in girls”.
Nicky Clark, 49, a disabilities issues campaigner, parent patron for Ambitious About Autism, and a mother to two daughters diagnosed as on the spectrum, emphasises just how prevalent thinking is of autism being a “male” issue. Clark herself was formally diagnosed as autistic in 2015, aged 48.
Clark, who lives in Shropshire, was shocked at the number of people who suggested the diagnosis was wrong. “It’s this idea that women can’t be autistic,” she told BuzzFeed News. "'She can’t be autistic because she’s a mother, she can’t be autistic because she’s had a long-lasting relationship. She can’t be autistic because she wears makeup and she’s interested in pop music.' The nonsense that is said even now is quite staggering."
Infuriated, Clark started the hashtag #SheCantBeAutistic.
When Clark's youngest daughter, Emily, was diagnosed aged 3, there had been more time for people to understand the condition better. For her elder daughter, Lizzy, the diagnosis was an uphill battle.
Lizzy experienced difficulties at school, Clark says, including being bullied and ostracised by her peers, but “it was very much put on to Lizzy as being problematic, she was the problem”. It took 18 months for Clark to get her daughter formally diagnosed as having Asperger's syndrome, often described as a "hidden disability".
Key traits of autism in girls are still not clear – if they exist at all. While boys, for example, have been noted to develop fixations with unique hobbies, or be socially withdrawn, girls on the spectrum often defy these seemingly established manifestations.
“Boys might line things up, girls might collect things,” Mills says. "In older girls we tend to have seen girls gravitating towards older girls, fixing on older girls, or pop stars, or particular pop groups, this kind of thing." While these “fixations” can be be “all-consuming and socially isolating”, he says, they can also be "difficult to untangle from normal development."
Researchers have also found that a significant number of diagnosed girls develop an ability to mimic the behaviour around them, but often at a huge personal cost.
As Povey puts it: “Imagine a young girl who is really lost in this world, doesn’t understand how other people act, doesn’t get all the other sort of hidden social intricacies going on around her.
"What seems to happen is they therefore look at the girls who seem to be doing it best and almost copy that, without understanding what’s happening underneath and peoples’ motivations.
“So often they are almost the most perfect girls, but there is all this panic going on underneath the surface."
This panic has a knock-on effect on mental health: Around 70% of people diagnosed as on the spectrum also suffer from serious mental health problems. Anecdotally, high-functioning autistic women appear even more likely to suffer mental health issues – which may contribute to persistent misdiagnosis.
In Swiatek's experience, it became difficult for professionals to untangle traumatic life events from her biological condition. “You sort of become defined by that,” she says.
Both Povey and Mills say the mental side effects experienced by anyone on the spectrum, but particularly by girls and women, are only now being properly explored.
“There is quite a bit of evidence of Asperger-type kids [boys] being 'protected' by older or even same-age girls and being badly bullied by their [male] peers,” Mills says. “Whereas with girls, they tend to be bullied by the girls and taken advantage of sexually by the boys.”
Many of the women Povey has encountered have been “amazingly vulnerable” despite their cognitive abilities, she says. "Often you will come across really very bright women who still put themselves in very vulnerable positions,” she says. “They can’t understand why they are struggling with simple things like the relationships that other people seem to take for granted and seem to do so easily.
“That wish for a friend, or a partner, or other social expectations can put them in very vulnerable situations.”
“I think when you are an 'Aspie' growing up,” Swiatek says, “you are so used to getting things wrong, so you are always trying to be the good girl. When someone will reward you for that in any way, because you don’t have the in-built safety mechanism necessarily, it can mean you are much more vulnerable.”
The treatment and perception of autism has shifted immeasurably in the past 70 years.
In the 1980s, professor Judith Gould and fellow pioneer Lorna Wing built on Asperger’s work. Specifically, they expanded the definition of autism and the understanding around who could be included in the autistic spectrum.
The 1990s witnessed a “sea change” in attitudes to the condition. Many of those previously diagnosed with schizophrenia or minimal brain damage were recognised as autistic and more funding was directed towards research.
Asperger’s suggestion almost 70 years ago of a “continuum” is what we now would now recognise as the autism spectrum – but holes remain, notably the absence of specific research into the experience of women and ethnic minorities and the longstanding effects of being on the spectrum as an adult.
Even when the diagnosis appears clear, to the individual and to her GP, women on the spectrum face a fight to get formal recognition. Swiatek counts herself as lucky – she was diagnosed by Gould.
Swiatek describes the experiences of a friend who was sent to a "specialist" after doctors suggested she might be on the spectrum. “She said she had to say to him she was seeking an Asperger's diagnosis," Swiatek said, "and he went away and said, ‘I don’t know enough to diagnose you.’ And that’s the person she was sent to as first diagnostician.
“I think we have a lack of awareness that impacts you speaking [out to seek help], then you have the stigma and the fear around it, and then just the process is so hard.”
Clark recalls how she was taken aback by the reaction of others when she shared the information with others. “People called me brave,” she says. “Which to to me highlighted the fact there is inherent stigma in it, an element of risk, because people are still challenged.
“I told all of my friends, because when the diagnosis came through I wanted to share that, and I heard back from two people… They were the only people who got back to me.”
She continues: “I think if I had written I had broken my leg I would have been inundated. I have seen everyone since, I have been at social events, and it is not mentioned, as though it is somehow embarrassing. They are lovely people, but I think it is very telling and highly indicative of how society generally responds to something like this.”
It's part of a wider issue, both suggest, of the invisibility of women on the spectrum.
And though there have been improvements in some representations of autistic women in the media, people's most likely point of reference remains Dustin Hoffman's character in Rain Man, Swiatek says: "It’s really annoying, because where are the kind of awesome, confident women?
"We don’t tend to see them."
Clark says a cultural shift is needed. Until a member of Little Mix comes out as on the spectrum, she says, laughing, people will continue to be challenged by what autistic people – especially female ones – are really like.
Swiatek feels there is an absence of support and resources for those women who are aware of their condition. “I found it is pretty hard to know where to go, and I think we are not necessarily addressing it as a country," she says. “A lot of the [support] groups tend to be very focused on male presentations of Asperger's or women with that more classic autism that fits more of the male presentations: There’s not much for [an] intelligent, quite confident, sociable person.”
Clark says: "You are given a diagnosis and then you are left, really.”