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2021

Writing about autism: ‘Parents are sick of being asked what special skill their child has’

It was at my first event for Shtum, almost exactly a year ago at Dulwich Books in London, when I first got a taste of the impact the book would have. Almost everyone asked me about autism. It may seem naive but I didn’t expect it. Despite having been a father to a non-verbal autistic son for almost 16 years, I had never had an in-depth conversation with anyone about the subject, apart from solicitors, barristers and doctors.

The event at the bookshop was something of a watershed in my life – and not an altogether comfortable one, for I had never been a joiner. No groups, no clubs, no societies, no Facebook groups, nothing. I had guarded my privacy and opinions. This had nothing to do with shame surrounding my son’s autism – far from it. But it was based on two long-held realisations of my own character: I hated confrontation and felt my opinions were of little value. And when one is crippled by the first, the second feels like pulling teeth. The first has not changed; the wrongness of the second, I am still coming to terms with.

So how did Shtum come about under such personal strictures?

It was born, using Pethadine and forceps, during a master’s in creative writing at City University, London. The course director told me I should write about autism. I told him I wasn’t going to. He may have mentioned the word “hook”; I may have replied with the word “bollocks”. And then I went home and thought about it and came back with two criteria: it had to be honest and it had to include genuine humour.

So I began writing and planning, and it quickly morphed into something wider, something thankfully beyond memoir – which I wanted to avoid at all costs – and into a work that discussed wider issues of communication and family secrets; how the ability to express oneself verbally is no guarantee of proper human communication.

During a first reading of 1,500 words above a pub in Clerkenwell, my current agent approached me – actually, within a couple of days, three other agents had emailed me hoping to see the finished manuscript, which was exciting and uplifting. But I still had to finish it. Finishing a novel is difficult – one as personal as mine even more so – but following many iterations and six weeks of anxiety after it was sent out, it was bought by Orion. And I thought the hard part was over.

And so back to the event at Dulwich Books. Autistic people and parents of autistic children are protective of their children and vocal critics of depictions of autism in the arts and media. That night I had extremely positive feedback from both groups. Subsequent events all over the country and online reviews have also proved to me that Shtum has provided a rallying point and, at the very least, solace to those parents of autistic children like mine who do not speak and who are sick of being asked what special skill their child possesses. I think the most often-used word in relation to Shtum has been “finally …”

I find this all humbling and gratifying. It has now been 10 months since the hardback was published. I have been a writer for 30 years, so the critical acclaim Shtum has received feels like a shock, but also a vindication of all the hard work that went into it.

As it is published in paperback, I am once again about to embark on a full schedule of readings, Q&As and panel discussions, most of which will no doubt focus on autism rather than the mechanics of writing. I think I’ve come to accept that if the mechanics are invisible, the story can shine even brighter – this has always been my experience as a reader – and I hope it continues to shine.

Extract

Emma waits in the kitchen because the smell makes her gag. So the day unravels like every other: bath running, Jonah standing half-sodden while I open the windows, remove the bedsheets and spray the mattress cover with disinfectant. The sheets I ball together with his reeking pyjamas. The aromatic nappy and soiled wipes get tied in a plastic bag, and in he hops –the bubble-covered water turning to consommé on contact. I clean him vigorously, showering off the stubborn bits, and dry him with his navy towel – any other provokes a tantrum. Dressed, I shoo him along the corridor for breakfast. That’s our division of labour – she deals with what goes in and I deal with what comes out.

More about the book

Shtum, the Yiddish word for keeping silent or hiding secrets, is the perfect title for a novel in which even those who can speak do not share their thoughts with each other … Lester doesn’t spare his main character: Ben isn’t an idealised hero battling for his disabled son’s rights. His failings are laid out in plain sight. He is a man-boy who has never quite grown up. At one point he reflects: “I’m wearing a costume, shuffling around in oversized shoes, playing the role of an adult.” This is the literary territory of Tony Parsons and Nick Hornby, infused with the Jewish humour of Howard Jacobson and Shalom Auslander. – Saskia Baron

Shtum by Jem Lester is published by Orion at £7.99 and is available from the Guardian Bookshop at £6.79.