Today, on World Autism Awareness Day, we are joined by Jemima Forrester. She is the editor of Shtum by Jem Lester, a story about fathers and sons, autism, and dysfunctional relationships.
When Shtum first landed on my desk, around about this time last year, I knew that I’d chanced upon an incredibly special debut novel. Funny, raw, honest, it lifted the veil on the joys, challenges and often heart-breaking lows of having a child with severe autism.
Shtum tells the story of Ben, a father whose ten-year-old son, Jonah, is profoundly autistic. Jonah is non-verbal, doubly incontinent and prone to violent outbreaks. He’s a handful, but he’s also funny, sweet and refreshingly straightforward. He loves feathers and the feel of smooth objects. He’s happiest outside with no clothes on – no matter the weather.
Shtum follows Ben’s struggle to secure Jonah a place at a brilliant and eye-wateringly expensive residential school for children with profound autism. He must battle the local council, who unsurprisingly don’t want to fork out the school fees, a string of well-meaning but hopeless social workers, and his own desperate dependence on alcohol.
It’s a difficult and often heart-breaking story to read, but it’s balanced with a real lightness of touch and a humour that transcends even the darkest moments.
Above all, Shtum is a novel about communication. Ben is spectacularly bad at communication and his relationships with his wife and his father, Georg, suffer because of it. Ironically it is Jonah, beautifully guileless and with no words of his own, who is the best at conveying his feelings and desires. It is through ever-silent Jonah that Ben finally learns the importance of communication.
I have no personal experience with autism spectrum disorder and, before I read Shtum, my knowledge of the condition was limited to what I’d read in books and seen in films. I – like so many people – associated autism with limited social skills and above-average intelligence.
This high-functioning autism has been popularised by books like The Curious Incident of the Dog in the Night-Time and films such as Rain Man, but it represents only a tiny portion of a condition that covers a vast spectrum.
It’s estimated that about one in every one hundred people in the UK have autism spectrum disorder and it’s significantly more common in boys than girls. But every person with autism is different and has different abilities and it’s important that books like Shtum and TV dramas like The A Word are unmasking the stark realities of autism and helping to spread awareness of an often misunderstood condition.
Jem Lester is perfectly placed to observe the realities of living with an autistic child. He himself has a son with severe autism and, like Ben in the novel, Jem went through the pain of a court tribunal to get his son the educational support he needed and deserved. And, while Jem counts himself lucky to have got his son into a brilliant residential school, there are thousands of children out there who aren’t getting the support and care they require.
Reading Shtum and getting to know Jem has revealed to me what so many people are going through every day – living, loving and caring for someone with severe autism. It’s hard, it’s ongoing and it’s painful, but it’s also hugely rewarding and full of love, joy and humour. Shtum is an original and eye-opening novel and one that I am very proud to be publishing.