Empowering girls with autism: advice for mainstream schools
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‘M. That’s what I’d like you to call me please. M. I’ll tell you why later.
In fact, I’ll be telling you lots about me and my tipsy-turvy, wobbly world. My beautiful, terrifying, difficult, anxious life.
I mean, I’m just like any other teenage girl. I want to fit in, have friends and wear nice clothes. I want to be liked and I have ambitions, plans and hopes.
I go to school and live with my mad family, but the difference is I deal with so many more shapes, sizes, noises, colours, textures and anxieties than you may ever know.’
This is the introduction to a novel written by creative writing tutor Vicky Martin in collaboration with the students of Limpsfield Grange School, a Surrey County Council secondary school for girls with communication, interaction difficulties and autism. Ms Martin composed the text, but the words belong to the girls themselves – all 72 of them, the entire cohort of the school.
The first in a series, M is for Autism has sold worldwide and been translated into Danish and Spanish since its publication in 2015. M in the Middle came out a year later and was longlisted for a children’s literature award.
The third title – as yet unnamed – is currently being developed and more will be created as new cohorts move through the school.
It was a former student, Beth Warbouys, who first had the idea of capturing the female experience of autism in a novel.
‘I went to the Autism Show in London in 2014 and, as I usually do, took some of the students with me,’ says headteacher Sarah Wild. ‘As she looked round the exhibition and saw how boy flavoured most of the literature was, Beth became quite cross and suggested we write a book of our own.
When I replied that we might need to find someone who would help us to pay for it first, she set off for the National Autistic Society stall and returned with the news that she had persuaded Robert Pritchett, NAS director of Autism Accreditation, to sponsor us.’
A collaborative venture
‘If you’ve met one person with autism, you’ve met one person with autism’ is a well-known truism, so it might seem an impossible task to capture 72 very different voices and combine them into a single character. Not so, according to Sarah Wild.
‘It’s the girls’ interpretation of how M would behave in certain situations,’ she says. ‘They try to think: “What would M do here?” and their personal experiences feed into that.’
The girls settled on M as the name the central character would give herself because, as the middle letter of the alphabet, it is hemmed in by all the other letters, as well as being a name in its own right.
‘They liked it because they felt it was squashed and pushed and constrained by all the things around it,’ says Ms Wild, ‘just as they are in the challenges they face every day.’
The novel evolves through a series of workshops, where Vicky Martin works with different groups of girls from across the school to explore their experiences through drama improvisations.
‘They get an idea for a theme, like a visit to the cinema or going on a date, and act it out,’ Ms Wild explains. ‘The first group starts it off, then the second group works on what the first group has done, which is further developed by the third group, and so on, until a chapter begins to take shape.
Ms Martin takes this away and writes it up, consulting the girls on her return to see if she has accurately captured how M would behave in the given situation and the language she would use.
Sometimes the answer will be yes, while other parts will need to be revised. The text goes back and forth quite a lot before the final version is agreed.’
‘I looked up anxiety in the dictionary,’ writes M in M is for Autism, ‘and this is what it says.
A feeling of worry, or nervousness, or unease about something with an uncertain outcome: “She felt a surge of anxiety”.
But this is what I say.
An uncontrollable, wild, savage beast that prowls beside me taking me hostage at its will. Can make frenzied attacks which strangle the life out of me. Stops me walking, talking, or seeing or hearing. It shakes my brain, my inner core and rattles my nerves. Inflicts terror, causes chaos and prevents a normal existence.
‘So I hope you can see it’s not possible for me to just pull myself together, as I haven’t worked out how to control this force, this frenzied, cruel beast. Sorry to interrupt you with anxiety but it interrupts me all day long…’
Difference and loneliness
The books cover a host of issues that affect the students’ lives, from identity, acceptance, and navigating the challenges of being a teenager, to making sense of social conventions and – the big one – anxiety. ‘Anxiety is absolutely massive,’ says Ms Wild.
But in what ways do girls on the spectrum differ from boys?
‘I think the main difference is that they are really motivated by relationships and friendships,’ she replies. ‘They are very mindful of what other people think about them, and they care. It’s not that boys don’t want friends too, but in my experience they seem less active in trying to find them, whereas girls start reaching out at an early age, trying to connect with people at school. But they don’t understand how to start a friendship, how to build it, repair it and sustain it.
When it doesn’t work out, they start observing how their peers behave in social situations and try to replicate that, suppressing their natural instincts to effectively construct their social selves.’
Because it’s not quite authentic, however, it still doesn’t work out, and the girls end up being even more aware that they are different and feeling very isolated and alone. At the same time, the effort of double-thinking their every move, while simultaneously watching and analysing other people’s reactions to them, leaves them mentally and emotionally drained.
‘By the time they go home, having tried to please everyone and hold it together all day, they are done,’ she says. ‘That’s when meltdowns or shutdowns occur because they have used up absolutely everything just getting through the day.’
Supporting girls with autism in the mainstream
The girls at Limpsfield Grange benefit from being in an all-female environment where they no longer stand out from the crowd and can focus on exploring their true identity, learning to understand and manage their challenges, build on their strengths, and become comfortable with who they are.
In this they are supported by highly trained staff, who give them lots of opportunities to talk through their issues, while the fact that their peers face some of the same challenges as they do leads to the development of some exceptional friendships which can last into adulthood.
That is very different from the typical experience of girls with autism in mainstream. So what can schools do to support them?
Building relationships is key, according to Ms Wild. ‘They have got to have a really good relationship with a couple of people they trust, and that they feel OK to talk to about who they really are,’ she says. ‘I think that schools need to make a regular space for that, probably every day.
‘I think they also need to talk to the young person about how they would like to be supported, because these girls are trying really hard to blend in. If you put in a whole lot of support, that can make them stand out even more, and they may not like it particularly.’
Anxiety is ever present in the girls’ lives and often makes it impossible for them to function. One of the ways Limpsfield Grange School tries to address this is by having students check in with a member of staff at the start of the day to anticipate changes and challenges that might lie ahead, and again when lessons are over to review how things have gone.
It’s an approach Ms Wild believes could be replicated in a mainstream setting.
‘If you do it every day, it will really help them,’ she says. ‘As the day goes by, all sorts of misconceptions are bound to arise, and this gives them the security of knowing that there is a place where they can take their anxiety and essentially fix it.’
She recommends restricting the scope of these conversations, however, not only because lengthy sessions would be unsustainable, but because they would actually be less productive.
‘Give it a rigid structure and set a strict time limit,’ she advises, ‘using visual reminders like sand timers or a smartphone app to make sure that you stick to it. We have 15-minute check-ins here – five minutes to identify the problem, five to sort it out and five to move on positively – but even 10 minutes can make a big difference.
If you let it run on too long, there is a danger that a student who doesn’t have great relationships with their peers will take advantage of the opportunity to monopolise adult time, or they can start catastrophising. So you focus on the things that really need to be sorted out right now rather than trying to fix it all.’
When girls are trying to interact socially, but don’t understand how to communicate in the same way that other people do, or how to read other people’s intent, it makes them very vulnerable.
To help them overcome this, Ms Wild recommends giving them lots of opportunities to talk about social situations, using a ‘wondering out loud’ sort of approach to deconstructing these, so they can understand how people have arrived at a given conclusion or why they behaved in the way they did.
She also points to the need to do some work around emotions, using concrete language to label how the girls are feeling and identifying what their triggers are for their peaks of anxiety.
‘Quite often, they won’t know how they are feeling, they will just know that things are getting out of hand,’ she explains. ‘So it’s about helping them to work out what makes them anxious, how that feels physically and putting in some strategies so they can manage it before it takes them over.’
Staff across Limpsfield Grange School use a common set of phrases to describe emotions and scaffold communication. The same terms reappear in language suitcases, designed to help the girls cope with their emotions during points of crisis.
‘A lot of the girls find it quite hard to self-regulate, especially when they are younger, as they have often had a very difficult time at primary school,’ says Ms Wild. ‘As a result, there are quite frequent meltdowns or shutdowns in school. The language suitcase is something we put together to support them when they become so upset, cross or shut down that they can’t access any language, or they are so overwhelmed by anxiety that their language deserts them.’
The suitcases are a simple way for students to communicate to staff what it is they need to do. ‘I need 10 minutes. I’m going to use something from the calm box to help me come down a bit.’ ‘I need to go for a walk’, ‘I need to go and see the goats’ or ‘I just need to sit here.’
The next step is: ‘I’ll talk to an adult’ or ‘I’ll write it down’ or ‘I’ll deal with it myself.’
And finally: ‘I need another 10 minutes because I’m not ready’ or ‘I’m ready to go back and do some learning now’ or ‘I’m ready to go back and repair the situation’.
‘When it all goes wrong, the girls get really worried about the fact it has gone wrong, and they don’t know how to fix it,’ says Ms Wild. ‘This provides a structure to take them through the steps that will lead to resolution.’
Dealing with problems in real time is another thing she believes is very important. She recognises that this can make delivering a lesson quite tricky, but the girls’ levels of anxiety are so high, so utterly debilitating, anything that is upsetting them has to be dealt with then and there.
‘If you try and save it for later, all they can think about is what has gone wrong, which makes them even more anxious, so absolutely nothing is going in. They can’t learn anything at that point because they are consumed with worry,’ she explains.
This is where a well-trained, experienced TA can prove invaluable. ‘We are quite practised at it, so it’s something we can just slip in,’ she goes on. ‘The TA will sidle up and quietly deconstruct the little incident that has just happened and help the student resolve it.
The emphasis here is on: “We have got to get this sorted out because we are here to learn. At work, you can’t let something destroy your whole morning. These are real life skills that you have got to develop.”’
As the headteacher of a unique provision, Ms Wild is invited to lots of conferences to talk about female autism. She always tries to take some students with her to these events to represent their own experience.
‘It’s vital that people hear how different an autistic experience is from one person to another,’ she explains, ‘and also that they understand what that experience feels like from the individual’s point of view. The girls speak very articulately and reflectively about what it is like to be them, and how they feel about autism in society. It is immensely powerful and quite often reduces people to tears.’
The letter M is squashed, pushed and constrained by all the things around it, just as the girls are in their daily lives
For the girls themselves, these opportunities bring home to them that they have a voice and that people will listen. ‘They have been marginalised all of their lives and probably will be once they have left us,’ says Ms Wild. ‘So it’s really important that they understand that their experience counts and that they are building a picture of social understanding of autism in its widest sense.
It is also a valuable skill for them to develop, because their lives are going to be hard and they are going to need to self-advocate all the time. This is a way of giving them confidence and practice to do that.’
The importance of talk
The work that goes into developing the girls’ powers of reflection and self-expression is an ongoing process that is embedded in the very life of the school. ‘We talk here all the time,’ she says. ‘Right from the day they first come to us, we are talking to them about themselves, about their autism, about society, about getting a job, about their future… everything.
We don’t really do anything special for the conferences. In fact, for the last conference I went to, I didn’t even know what they were going to say because they wouldn’t tell me.’
‘They are incredibly self-aware by the time they leave us,’ she adds. ‘They are also hugely supportive of each other, and very conscious of each other’s needs. That’s something else we talk about constantly, because they have got to understand that the needs of other people are different, as well as being similar to their own.’
Meanwhile, the original inspiration for the creation of the M... series has lost none of the persuasive powers that convinced Robert Pritchett to sponsor the project. Now training as veterinary nurse and doing extremely well, Beth was in school just a few weeks ago supporting Vicky Martin with Year 7 on the third title. She also accompanied Ms Martin to the Spanish launch of M is for Autism last year and spoke at the NAS conference in Harrogate with Ms Wild in March this year.
‘Beth has been involved in the series all the way through and is a very big advocate for the school,’ says Ms Wild. ‘For our current students, she is an invaluable asset as she can talk about the next step, transitioning into adulthood. She doesn’t gloss over the difficulties and tells it like it is. Her experience is really powerful and she is a terrific role model.’
All quotes from M is for Autism are printed with permission from Jessica Kingsley Publishers.