Where are all the girls with autism?
When Lana Grant took her 12-year-old son to a psychologist to find out if the struggles he’d been experiencing were signs of autism, she didn’t expect to end up with a diagnosis herself. But in retrospect, she says all the signs were there: she had been working in schools with children with autism and noticed how well she related to them; and she’d always felt different somehow, with social anxieties and ritualised behaviours that she kept to herself.
“I’d had lots of mental health difficulties up to that point,” she says. “I’d been diagnosed with depression and anxiety disorder. I just felt I’d spent the whole of my life two steps behind everybody else, and that seemed to be what my son was trying to articulate to the psychologist as well. I thought, ‘maybe this is the missing piece’.”
For decades, autism has been associated with boys and men. Hans Asperger in Austria and Leo Kanner in the US, the scientists who began defining autism during the 1930s and 1940s, based almost all of their observations on boys, creating the image of the autistic child as socially withdrawn and obsessively interested in technical subjects.
Estimates of the prevalence of autism have since varied between 15 to one and four to one in favour of boys. Researchers and clinicians even built diagnostic criteria around boys and men, going as far as to exclude women and girls from some studies. This male-centred approach has meant that thousands of girls with autism have gone through their education – and perhaps much, if not all, of their adult lives – without being diagnosed.
Ms Grant says she slipped through school under the radar, but describes those years as “awful”; she says that she felt like a “ghost child”. She’d once tried to walk out, only to be stopped by a drama teacher she liked, in whose lessons she could practise being a different person.
“The day I walked out after I’d finished my O levels was probably the best day,” she says. But sixth-form college was no better; she left without A levels and began a series of unsatisfactory jobs. “I just thought I was rubbish and useless at everything because I didn’t fit in these work environments,” she says.
Ms Grant’s late diagnosis is not uncommon; hers is a story that has been replicated across the country in recent years. The growing awareness of autism and the increasing numbers of children being diagnosed brought many mothers to the doors of psychologists, and some of them left with new ideas about difficulties that they had struggled with all their lives.
How had these women spent more than a decade passing through the education system without anyone identifying their condition? And how many girls are suffering in silence in classrooms right now?
Dedicated special school
Limpsfield Grange School is the UK’s only state special school dedicated to girls with autism. The students share a Victorian manor house in an idyllic part of Surrey with goats, sheep, chickens and alpacas.
The girls here challenge the accepted expectations of people with autism. “I’ve got a school full of girls who, on the whole, massively engage with literature and feel they want to express themselves through arts-based subjects: it kind of flies in the face of all those assumptions,” says headteacher Sarah Wild.
“[We have] girls who write poetry, who want to sing and dance and do all of those kind of things, who identify with fictional characters and sometimes want to be one.”
Last year, exasperated that there were no books for teenage girls with autism, two of the school’s students set out to produce their own, called M is for Autism, then pestered the National Autistic Society and publishers Jessica Kingsley into helping it into print.
“It’s a frightening world, it’s tipsy, turvy and wobbly. It’s lonely and full-on and sometimes it’s volcanic. But it’s my world and I can communicate,” says the central character of the book, M. “Sometimes people just need to listen to me or wait but what about it being for boys? Now I feel even weirder. Like I am weird in an already different world.”
For some of the Limpsfield students, fiction becomes their special interest, their refuge from a stressful world. One girl, Ms Wild says, had constructed an elaborate imaginative world where she was a great-grandmother, an important matriarch who was listened to by everyone.
Escapism in fiction and pretend play, often reproducing scenes from life or from stories they’ve seen, is as common in girls with autism as an interest in sciences and maths is in boys with autism. But for many of these girls, an intense interest in fairies and unicorns or boy bands and celebrity gossip – obsessional interests in people or animals, rather than objects – is taken to be simply girly, not autistic.
“Because the girls are quite able to talk about their thoughts and feelings, I think that people just kind of underestimated the impact that their autism has on them or misread some of it,” says Ms Wild.
Problems for girls often begin in Year 3, she says, when their relationships start becoming more complex. Girls with autism become increasingly socially isolated but feel powerless to change it, often developing mental health problems associated with anxiety. Eating disorders are common.
“I felt really different to all the others,” says Scarlett, a Year 7 student at Limpsfield Grange, of her experiences at a previous school. “There were other autistic children in my year, but I was the only girl. All the other autistic children were boys. I felt very different from all the other girls but I just wanted to fit in and have a normal life.”
The small, nurturing communities of primary schools often mitigate difficulties experienced by girls with autism, but many get referred for help just before secondary school, when staff begin to have concerns about whether the student will cope in a bigger environment.
But while difficulties might be hidden at school, home life can be fraught, with girls unleashing all the pent-up anxiety of the day, built up under a pressure to conform. “They’ll go home and have absolutely colossal meltdowns and family life is really difficult,” says Ms Wild. “Quite often, mums of girls on the autistic spectrum describe walking on eggshells the whole time.”
How do these girls get missed? Often the clues – emotional outbursts or withdrawal, poor social relationships at schools, obsessive interests in animals, a restricted diet – are not put together. This pattern of conformism at school and a disrupted home life means that they are often referred either for therapy or their parents are sent to parenting classes – “depending on what [social] class you are,” says Ms Wild.
“[But] if they’ve not been properly identified by Year 9, it’s gone really, properly wrong,” she says.
“[You get] really significant mental health difficulties: kids attempting suicide, just feeling really isolated, feeling like they’re not human. Or exhibiting really high-risk sexual behaviour.”
Copying social behaviour to fit in
Thankfully, research has begun to catch up when it comes to pinpointing autism in girls. The overall prevalence of autism spectrum disorders in the UK is now approximately 1 in 100. New estimates suggest that the real ratio between the genders could be as low as two to one in favour of boys, meaning that tens of thousands of girls in British schools could have autistic spectrum conditions but are getting no support.
Those girls with higher IQs are least likely to be diagnosed. Experts say that they are often more expressive, reciprocating in conversation more often and using non-verbal communication such as eye contact, traits that historically could exclude an autism diagnosis. They are frequently described as good mimics, copying social behaviour to fit in. But underneath all that, they have the same difficulty in understanding social relationships as boys with the condition.
Though the academics are making up for lost time, the challenges are immense. Earlier this month, the National Association of Special Educational Needs (Nasen) published a mini-guide to girls with autism for teachers called Girls and Autism: Flying Under the Radar. Barry Carpenter, co-author of the guide, says that the experience of creating the resource was difficult. “It’s like when you go to an international event and everyone’s speaking a different language,” he says. “We didn’t have a common language to describe girls with autism spectrum condition.”
Like those at Limpsfield Grange, it is the girls and women themselves who are at the forefront of formulating this language, using their expressive skills to offer insights into the realities of autism, the specific experience of women and the support that they might need.
“They are the minority of people on the autism spectrum but the majority of books written about the experience of autism are written by women,” says Jacqui Ashton Smith, executive director of education for the National Autistic Society.
One of those women is Sarah Hendrickx, who was diagnosed with Asperger’s syndrome as an adult. Before her diagnosis, she had written books about autism, had a master’s degree in the subject and had a partner with autism. But she rejected her suspicions about having Asperger’s syndrome herself because her outgoing personality didn’t seem to fit the mould, despite her difficulties in understanding social situations. Such difficulties, she says, can pose a risk for girls with autism.
“I’m absolutely dangerous in relationships,” she says. “Sometimes I wonder how I’ve not been chopped up and left in a ditch, with some of the stupid decisions I’ve made.”
Equally, she says, autistic people are at risk of acting like stalkers, especially if another person becomes their obsessive interest.
“The combination of being a bit naive, taking things at face value, so if someone tells you something you just believe them, and wanting to fit in socially, is an absolutely dangerous combination for some of these girls,” Ms Hendrickx says.
“They end up saying yes to all sorts of things that other people would be able to see a mile off were exploitative or predatory or abusive.”
What’s particularly hard for people with autism is making the real-time decisions about social life, about trusting people.
So how can schools help? The Nasen guide is a great place to start (see box, above). It was co-written by Ms Wild, so utilises all of the knowledge that has been accumulated at Limpsfield Grange.
Ms Hendrickx suggests teaching autistic girls to take time to phone a friend or discuss the situation with a mentor beforehand.
Lana Grant, who now works as a consultant, training education and health professionals about autism, agrees. Too often, she says, people think it’s enough to teach autistic people the rules of social behaviour. But every rule has an exception: what’s OK in your bedroom alone might not be OK when you have a friend for a sleepover.
Simply teaching rules also runs the risk of reinforcing pressures to conform and comply, which may themselves be perilous. “Autistic people, we do like rules and routines, but life isn’t like that,” she says.
Finding a supportive group of friends who can help navigate the confusing rules of the social world is one of the biggest concerns for girls with autism. That was one of Victoria Honeybourne’s conclusions after interviewing 70 women about their experiences of school and the support they wished they had.
Ms Honeybourne, a teacher who was diagnosed with Asperger’s syndrome in her twenties, is publishing her findings in May in a book called Educating and Supporting Girls with Asperger’s and Autism.
“The big issue seems to be friendship,” she says. “A lot of people mentioned things like having to go and hide in the toilets at break time or lunch time, just not having anywhere to go.”
The book offers multiple insights. For example, offering a quiet place for any student to read a book during breaks can help to normalise preferences, rather than setting children up for rejection by insisting that they go and play. And in class, they hate being called on to give an answer. If they don’t know it, they feel that the teacher must know that and is deliberately shaming them. If they do, they feel that their understanding is being challenged.
Where there are rules, children with autism demand to see them applied consistently, but they need rules that accommodate their differences. They dislike group work, and they hate it when children pick groups themselves.
They want instructions to be very explicit, too, and they want clear guides to how social behaviour works. Ms Honeybourne says foreign languages can be useful for this, offering the opportunity to cover conversational basics that they may have missed.
Guides such as this, and the Nasen guide are just the beginning: teachers working with girls with autism say that there’s a huge need for more research to understand what works for them. And there’s an enormous task ahead in identifying girls with autism whose diagnosis may have been missed and making a school system where they can thrive and feel accepted.
The reward for listening to these girls may be a school system that works better for everyone. “The girls’ experience can also help to articulate what boys with autism need, and autism can articulate what ordinary children out there need,” says Jacqui Ashton Smith.
“Understanding and getting it right for children with autism can be a way of getting it right for everyone.”
Joseph Lee is a freelance writer. You can find him on Twitter @josephlee and his website, joseph-lee.info