‘It’s not an illness. It’s just how I am.” “I want to make friends but I just don’t know how.” “I always felt like I was in a dark corner of a library that no-one went in.”
These are some of the ways girls at Limpsfield Grange School describe their autism in a remarkable YouTube video that has been viewed almost 30,000 times.
The only state boarding school in the UK specialising in girls with autism, Limpsfield Grange in Oxted, Surrey, has 75 girls aged between 11 and 16 on its roll. Many of them have been diagnosed with Autism Spectrum Disorders (ASD) and suffer from “high and persistent levels of anxiety”.
It is estimated that there are around 700,000 people on the autism spectrum in the UK today. 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 Limpsfield Grange headteacher Sarah Wild, think it is nearer to 2:1 – “which means there are lots of undiagnosed girls”.
With this in mind, Ms Wild believes that it is crucial to raise awareness of autism in girls and to identify and support girls with autism during their primary school years and beyond. Virtually all the girls at Limpsfield Grange, most of whom previously attended mainstream primary schools, were not diagnosed with ASD until they got to year 6 and were approaching secondary school.
The pupils themselves were so determined to talk about their autism that they decided to make a film and put it on YouTube. 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.
The girls have also written and illustrated their own thought-provoking and uplifting novel about a teenage girl with autism, M is for Autism.
As M, the novel’s protagonist, explains at the start of the book: “I’ve been pushed into a room and I’m stuck. I can see through the windows but I can’t open them and I don’t even know if I can see the same objects, people and colours as you. I’m just not sure. I’m locked in and I don’t have a key to get out.”
“Our pupils are really feisty and feel very strongly that they want people to understand that it’s different for girls on the spectrum than it is for boys,” explained Ms Wild. “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 they 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.”
Ms Wild is keen to help primary school teachers recognise autism in girls and says that there are a variety of signs to look for.: “There tend to be two different models of autism in girls in the primary years,” she explained.
“They might, for instance, be on the social periphery of groups, quite passive socially and with a tendency to be mothered by more dominant characters. They might have difficulty joining in with or keeping up with social play, unless someone structures it for them. On the other hand they might be totally controlling and dominating, with no negotiation skills whatsoever. If people don’t do things their way there will be a massive meltdown.”
Other clues include repetitive behaviours or routines, struggling with aspects of language (“they may be quite literal in their interpretations of language”), sensory issues (“they might find loud noises or particular smells difficult to deal with”) and seeming quiet, “shut down” and overwhelmed.
Many of the Limpsfield Grange girls have told Ms Wild that their primary school years were “absolutely hideous”.
“They are often at breaking point by the time they get to us,” she continued. “It’s partly because girls on the spectrum are really motivated by friendships with people. They want to be friends and are likely to start social interaction, but they get it a little bit wrong all the time. They are double thinking what they need to do to make friends and it’s exhausting for them.”
Problems frequently arise in year 5, when their peers’ interactions become more language-based and interests change.
“Girls on the spectrum have similar interests to their peers but the length of time they are interested in them tends to be longer and the intensity of that interest tends to be much greater,” said Ms Wild. “So they might be into animals in year 5 when everyone else has moved off animals and all their friends are talking about Justin Bieber.
“The gap between them and their peers widens dramatically between year 5 and year 6. By the end of year 6 girls with autism might be involved in self-injurious behaviour – such as pulling out eyelashes, pulling out hair, banging their heads in school, saying they want to kill themselves or refusing to attend school.”
So, how can primary schools identify and support girls with autism?
Listen to parents
If parents tell you that their child is coming home from school and having meltdowns, look at the child in school. Just keeping their head above water is not the same as thriving, so ask yourself if the child is struggling. Do they have any actual friendships? Do they look overwhelmed? Are they exhibiting the same kinds of behaviours as their peers? Are they socially passive? If the answer is “yes” to any of these questions, then you need to dig deeper.
Talk to the child
The type of support required depends on the individual child: “My advice would be to talk to the child, find out what difficulties they are having and ask them how they like to be supported – because one size doesn’t fit all,” said Ms Wild. Suggestions include using a child’s name before you give an instruction and setting up a social skills group with a couple of other girls in the class where you model and talk about establishing and maintaining friendships and promoting positive self-esteem.
Social anxiety
It is important to bear in mind that while some girls with autism require support with learning, not all do. For many, social anxiety about their relationships with peers will be their biggest barrier to learning.
Calming toys
Primary classes are noisy, busy, visually stimulating places. Placing a selection of calming toys in the classroom can help to reduce anxiety.
Introduce scripting
When girls with autism find something difficult or have an emotional response to a situation their capacity to take on new language may decrease. If all members of staff use the same language at times like these it can be comforting and supportive for the child.
Support
Don’t try and do it on your own. Every local authority has an outreach team for autism. These teams provide support for primary and secondary schools working with children and young people with a diagnosis of autism, Asperger syndrome or ASD.
“If you have got a bit of a hunch about a child, contact the outreach team and they will come and do some work with you, from training your staff to doing an observation with you in order to get some support,” Ms Wild added.
- Emma Lee-Potter is a freelance education writer.
Further information
- For more discussion about autism and girls, we last tackled this topic in November. See Autism and girls, Headteacher Update, Autumn 2, 2015: http://bit.ly/1TdQdPq
- There is a wealth of information about girls with autism online, including on the National Autistic Society’s website: www.autism.org.uk
- Limpsfield Grange’s website – www.limpsfieldgrange.co.uk – has a host of useful links, including the pupils’ YouTube video.
- M is for Autism by the students of Limpsfield Grange School and Vicky Martin is published by Jessica Kingsley Publishers, price £8.99