There are around 700,000 people on the autism spectrum in the UK. But while experts agree that more boys than girls have autism, views on the exact ratio vary widely.
Some put it at 16:1, 7:1 or 4:1 but others, including headteacher Sarah Wild, believe that 2:1 is nearer the mark – “which means there are lots of undiagnosed girls”.
“They are masking it, trying to fit in, trying to be like everyone else,” explained Ms Wild, who has been head at Limpsfield Grange School, the only state boarding school in the UK for girls with autism, since 2012.
“We need much better awareness of what autism in girls and women looks like. Just because the girls aren’t obsessed with Thomas the Tank Engine or lining things up in neat rows doesn’t mean they are not on the spectrum.
“Just because girls can make eye contact, have a reciprocal conversation with someone for five minutes and exchange small pleasantries doesn’t mean they are not autistic. It means they’ve learned to do it. We have to redefine what we think autism is.”
Limpsfield Grange School is based in a Victorian manor house in Oxted, Surrey, and has 75 girls aged between 11 and 16 on its roll.
All the students have an Education, Health and Care Plan (EHCP) identifying their educational, health and social needs and everyone follows the school’s Rainbow Curriculum, a programme that develops their life-skills, from personal hygiene and cooking through to problem-solving and social interaction skills.
The academic curriculum is broadly similar to mainstream schools but classes are smaller, with high staff to pupil ratios.
The girls come from all over the country and most board for at least two nights a week. Many of them have been diagnosed with autism spectrum disorders (ASD) and suffer from “high and persistent levels of anxiety”, meaning they are too emotionally vulnerable to cope in mainstream education.
Ms Wild and her team are committed to raising people’s awareness of autism in girls and want to help teachers in all schools to identify and support girls with autism. Virtually all the girls at Limpsfield Grange, most of whom previously attended mainstream primary schools, were not diagnosed until they got to year 6 and were approaching secondary school.
Places at Limpsfield Grange are so sought after that Ms Wild receives 10 sets of paperwork on her desk every week. Most girls start in year 7 but one or two are referred by specialist NHS children and young people’s mental health services (CAMHS) in year 9 – “often because they’ve experienced a failure in one or more mainstream settings”.
Those who arrive in year 7 express their relief at being in a school where they can be themselves and do not have to pretend to be someone else. The biggest issues for girls of this age with autism, however, are to do with friendships.
“They really want to be friends with people like them,” Ms Wild continued. “But they often have no successful experience of it and don’t understand how to build, maintain or repair a friendship. We teach them how to do it.”
Anxiety is another common theme: “All the girls who come here, whether they are on the spectrum or not, have high levels of anxiety that directly affect their lives.
“We have children on a rollercoaster of anxiety, all day, every day, right across the building, so we do things like having daily structured conversations with the girls. These are 15-minute check-ins with a member of staff – a teaching assistant, learning mentor, teacher, anyone the child has a good relationship with.
“The check-ins consist of five minutes of identifying a problem, five minutes of solution-finding and five minutes of wrapping it up and moving it on.
“The girls love this approach. They like the fact that we are saying to them: ‘I know you’re anxious. I’m just going to ask you to put it to one side because we can discuss it when you have your check-in’.
“It’s like a safety net – because if you don’t provide an outlet the anxiety builds and builds and children can’t learn if their heads are full of worry.”
Staff at Limpsfield Grange teach the girls how to identify when they are becoming anxious and how to divert their anxiety by doing something else. Strategies include using a “bubble wrap” app on their phones or a “metronome” app that helps them to regulate their breathing and mindfulness exercises.
The school also uses a five-point scale to help girls contextualise their anxiety.
“Five is like the biggest deal ever in history and one is ‘someone touched my pencil case’,” explained Ms Wild. “It’s a matter of saying ‘on the five-point scale where do you think this issue is?’ and then having a conversation about why it might not be as big an issue as they think it is. By the time they get to year 11 they are able to work it out themselves.”
The girls themselves are keen to talk about their autism and how it affects them.
“Our pupils are really feisty, a bit like DIY punk feminists,” said Ms Wild. “They feel very strongly and want people to know about autism.
“It’s really different for girls on the spectrum than it is for boys and because we have referenced everything we know about autism based on boys’ behaviour the girls don’t feel they have any representation at all.
"People think they are being odd or difficult or unhelpful but what they don’t understand is that the girls have the same difficulties as boys on the spectrum but it presents in a totally different format.”
The Limpsfield Grange pupils have already done a huge amount to help girls with autism. First of all they decided to make a film about themselves and put it on YouTube (the video has been viewed more than 28,000 times).
Members of the media company that produced it were so inspired by their stories that after two days of filming they suggested making a television documentary too. The result, Girls with Autism, was shown on ITV last year (2015).
The girls have also co-written and illustrated their own thought-provoking and uplifting novel about a teenage girl with autism, M is for Autism. Subtitled The Teenage Girls’ Guide to Autism (and everyone else’s), it tells the story of teenager M’s “tipsy, turvy, wobbly world” – and includes her mother’s perspective too.
At 16 many of the Limpsfield Grange girls go on to take higher level qualifications at college but Ms Wild would like to see better post-16 provision.
“The aim of everything we do is that we are trying to make the girls economically viable to the best of their ability so eventually they participate in and contribute to their local communities,” she said.
“Like most young people they want to be liked, they want to feel they are worth something and they want to belong to a community of people who accept them and celebrate them for who they are.”
- Emma Lee-Potter is a freelance education writer.
Further information
- For more discussion about autism and girls, SecEd last tackled this topic in September: Autism and girls, SecEd 423, September 2015: www.sec-ed.co.uk/best-practice/autism-and-girls/
- There is a wealth of information about girls with autism online, including the National Autistic Society’s website: www.autism.org.uk
- Limpsfield Grange’s website has a host of useful links, including the pupils’ YouTube video:
www.limpsfieldgrange.co.uk - M is for Autism by the students of Limpsfield Grange School and Vicky Martin is published by Jessica Kingsley Publishers, price £8.99.