BETH Worboys was desperate to read a novel aimed at girls like her. “All the books about autism were for boys,” the 17-year-old said. “I wanted to read a book aimed at anxious, isolated girls like me.”
Thanks in large part to Beth, that novel now exists. At an autism event last year, the teenager, then a pupil at Limpsfield Grange, a school for girls with autism and communication difficulties in Surry in the UK – and the subject of an ITV documentary – cornered Robert Pritchett, a leading figure at the National Autistic Society. She persuaded him to fund the book.
The resulting novel, M is For Autism, was published in the UK last week.
Co-written by the entire school, it allows the reader to view the world through the eyes of a girl with autism. And, with experts now recognising female autism often goes undiagnosed, it’s a novel that could change lives.
Written over three months in collaboration with 72 pupils during a series of workshops led by playwright and creative writing tutor Vicky Martin, M is for Autism invites readers into the anxiety-ridden world of M.
Drawing on real-life experiences, it captures the highs and lows of being “different in a world of normal”.
It could also make interesting reading for parents, teachers and women who may identify with M.
“There’s a tsunami of women with undiagnosed autism out there struggling with mental health issues,” Limpsfield Grange headteacher Sarah Wild said.
Beth is not like these women in that her autism was diagnosed by the time she was four.
Aggressive and angry as a toddler and with delayed speech, she was different from her five siblings, and by the time she was 11 she was suffering from Tourette’s syndrome and obsessive compulsive disorder (OCD).
“The anxiety I felt all day at mainstream school used to make me vomit when I got home,” Beth said. “It was a daily struggle. Fitting in was really hard.
“I made out I was fine in class because I wanted to be like everyone else. I couldn’t understand why I wasn’t.”
A recent study from the Kennedy Krieger Institute in Baltimore indicates, while for boys the mean age at diagnosis is three, for girls it’s four, and for many diagnosis occurs quite a few years later. This is perhaps because girls exhibit different and less severe symptoms.
Wild said: “For 30-odd years following Hans Asperger’s pioneering research into Asperger syndrome [high-functioning autism] it was believed girls didn’t suffer from autism at all as the condition was only identified in boys.”
Recent years have seen a shift. Estimates vary and, while some studies have found that for every four boys diagnosed with autism, one girl has the disorder, experts have also speculated that many girls with Asperger syndrome are never referred for diagnosis.
“The stereotype of autism is someone a bit locked into themselves and obsessive, but girls are more subtle than that.
“In conversation they can take turns to speak, make eye contact and engage in small talk, although they probably don’t understand the subtext of it.
“Some call it masking, but we call it social formatting, as in essence it’s copying and pasting someone else’s behaviour and trying to make it your own, but without understanding where that comes from,” Wild said.
Social situations can take both a psychological and a physical toll on girls on the autistic spectrum.
“They might seem fine at school or in social situations, and they’re hardwired to please, but then they’ll go home and have epic three-hour meltdowns,” Wild said.
“These can include screaming, crying, vomiting, violence, not eating, imploding, trashing things, pulling their hair out and banging their head against a wall.”
Clinicians say there are probably a significant number of undiagnosed women on the autistic spectrum accessing adult mental health services for depression, OCD, eating disorders and self-harming.
Staff at eating disorder clinics in Birmingham recently discovered that, of women in their twenties attending the clinics, between 60 and 70% were undiagnosed autistic women.
Limpsfield Grange, believed to be the only all-girls school for autism in the UK, follows a similar curriculum to a mainstream school, but with smaller class sizes. Pupils are taught how to recognise emotions, and to learn strategies to prevent meltdowns.
It’s hard to imagine how 72 pupils could end up singing from the same hymn sheet, but Martin insists co-writing the book was a joyful experience – if intense.