Novel explores how autism can teach a family to communicate

LONDON — “The only thing predictable about Jonah is his unpredictability,” says Ben, the narrator in Jem Lester’s debut novel “Shtum.” As he cautiously monitors Jonah, his profoundly autistic son, sitting in the back of a car Ben knows even a mere detour has the potential to cause Jonah anxiety and Ben “untold stress.”

“Shtum” centers around ten-year-old Jonah, who is non-verbal, doubly incontinent and requires constant attention. When frightened, anxious or frustrated he can harm himself and others — including those who love and care for him. His parents, Ben and Emma, are struggling to cope.

A specialist residential school would provide the best help for Jonah’s needs, but Ben and Emma are forced to launch a legal battle against their municipality, which is reticent to grant the considerable funds.

At the heart of the narrative is communication — or rather the lack of it — between three generations of men: Ben, his father Georg, and Jonah.

When Ben and Jonah are forced to move in with Georg, the stresses intensify and Jonah, blissfully innocent, becomes the prism through which all the complicated familial strands of identity, history, and misunderstanding are viewed.

Reviewers described “Shtum” as “an unforgettable first novel,” and “an exhilarating roller coaster ride between pathos, comedy, and anger.”

Jem Lester holds his son Noah as a baby. Like the novel’s Jonah character, Noah is on the autistic spectrum and requires special care (courtesy)

It has been included in The Independent newspaper’s “10 Best Book Club Reads for 2016,” and Lester has been referred to as “one to watch” more than once.

Lester, a former journalist and English teacher, cannot quite believe the level of attention and accolade that his book has received. Engaging and easy going, he says over a drink in a busy central London café that even the pre-release review proof copies had to be reprinted several times.

Publishing rights have been sold to numerous countries, including Israel, where Sendik Books will be publishing the Hebrew version.

“Shtum” is vivid, raw and unremitting in its portrayal of parenting a child with autism. It is a perfect example of how compelling the art-life continuum can be — Lester’s 16-year-old son, Noah, is severely autistic.

A story close to the heart

Although “Shtum” is a work of fiction, many of the events, scenes, and emotions that appear in the book are based on personal experiences.

“The thread of the story regarding the tribunal, the bureaucracy and the machinations leading up to that is pretty close,” he explains. “And Jonah as a character probably started off in my head as my son, but at some point during the writing, he just became himself.”

There are other parallels. Much of Jonah’s behavior is based on Noah — who also doesn’t speak — and certain aspects of Ben’s character echo his own, although not as much as some would imagine, he says.

‘I thought that if I can make it funny and honest, then I will do it’

“This idea of his not finishing anything is me and I think that I have always had great difficulty — and probably still do — with communicating my needs, wants and feelings. The irony is that I always found I could do it on paper but I couldn’t ever confront it.”

But, he says, Ben’s relationship with his wife is completely fictional. And, unlike Ben, he never felt the kind of frustration for his son that Ben exhibits surrounding Jonah.

Lester had known about his son’s autism from a very early age and, “I was so in love with him it made no difference. And then after a while, you can’t imagine the child being any other way.”

Behind the scenes

“Shtum” was written while Lester was studying for a Masters degree in creative writing. Yet writing about autism had not been Lester’s initial intention. Prior to beginning the course, he, his ex-wife — with whom he had separated when Noah was still very young — and her husband won a tribunal claim for Noah after a year-long fight against the local municipality.

Author Jem Lester has received a warm reception to his debut novel ‘Shtum,’ but still faces daily challenges raising son Noah (Catherine Ercilla)

“I’d lost both my parents in the previous three years. It was tough. Then I started the Masters the very next day [after taking Noah to his new residential school]. At that point I was so raw from it that I thought, ‘No, I’m too close.’”

Lester’s course director encouraged him otherwise and once Lester had talked about the idea with a few people he trusted, he changed his mind.

“I thought that if I can make it funny — my inclination in my writing is always to do that — and honest, then I will do it,” Lester says.

The family in “Shtum” is Jewish but “it doesn’t resemble my own,” he says. One of the novel’s most poignant characters is Ben’s father Georg, a Holocaust survivor, who is unable to talk to his son about his traumatic past and instead, relays his childhood experiences to the silent Jonah.

The nature of the relationship is not only confessional, it illustrates the special intergenerational bond that can exist within families.

“It wasn’t a book until I found him,” Lester says. But the process of writing “Shtum” gave Lester no catharsis whatsoever — “Not even remotely. It was really difficult.” And revising the book became an onerous task.

“That was the hardest bit. Not that it required major surgery but simply because I was going over and over and reading through the same [painful] stuff. It took me a year when it should have really only taken two or three months.”

Lester came up with the idea of the book’s apt Yiddish title – the word for silent or non-communicative. His course tutor, who is also Jewish, liked it but told him not to be surprised if it got changed in case the word or its significance was not understood. Fortunately it has not been an issue.

“All the way down the line, they’ve loved the title,” Lester says.

A wider context

In a coincidence of autism narratives, the release of “Shtum” comes at the same time as the screening of UK BBC drama series “The A Word,” which is an adaptation of Israel’s award winning Keshet International series “Yellow Peppers.”

Cover of ‘Shtum’ by Jem Lester. The author’s debut novel was released on April 7 by Orion (courtesy)

It focuses on a family’s painful — and often humorous — journey of denial and introspection after their five-year-old son is diagnosed with autism. In Lester’s view, bringing such a story to a wider audience can only be a good thing.

But he is keen to challenge the popular “genius” stereotype — that a person with autism has a special talent or gift, such as the protagonists depicted in “Rain Man” or “The Curious Incident of the Dog in the Night-time.”

A staggering 25-30% of adults and children with autism have no language, he says — a statistic that he admits shocked him when he found out. These characters rarely seem to have been represented in literature or film.

“I think that’s why people have cottoned onto my book, because it’s very different in its portrayal from anything else [on the subject].”

Although the characters in Lester’s fictional tale achieve some resolution, of course the reality for Lester is different. The issues are ongoing. Once his son Noah reaches 19, he says, he will be deemed an adult despite still presenting as a child and his care provision will have to change. Lester is only too aware of the potential challenges, both financial and emotional, that this will bring.

Before he leaves to get to his next interview, Lester says that he is still managing to teach, but only in a supply role because of his book commitments.

“One day at the BBC and one day being abused in the classroom,” he says laughing. “That brings you back to earth!”