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Autism

Reading Shtum by Jem Lester

If you have autism in the family, this story feels warmly and crazily familiar.

I knew I’d love the novel Shtum by Jem Lester because from the outset the story is both hilarious and heartbreakingly authentic. To whit, the opening scene has the narrator, Ben Jewell, bathing shit off his 10-year-old son Jonah while his wife Emma waits in the kitchen, “because the smell makes her gag.” It’s all just part of the family’s morning routine thanks to Jonah’s severe autism.

For anyone with autism in the family, Emma, Ben and Jonah’s story feels warmly and crazily familiar: The black humor with which his parents cope with their difficulties, Jonah’s funny and maddening behavior (as when, freshly bathed, he douses himself in ice cream and has to be cleaned up all over again before the school bus arrives), and Jonah himself — a beautiful, mute boy who rules their lives and hearts with his unpredictable and wild nature.

Despite the laughter and love in the Jewell household, things are unraveling. Jonah is about to age out of his current school and his parents are desperate to find him a new one. Emma has reached the end of her rope. She’s a lawyer and suggests that they feign a separation so that Ben, as a single father, can better win the sympathies of the local agencies that will determine Jonah’s placement.

Emma and Ben want Jonah placed in a state-funded boarding school for children with severe autism. They want this for him because it's a lovely, safe place. They want it for him because after six years of supposed appropriate education, he's still not toilet trained. They also want it for him because they are emotionally and physically exhausted with the day-to-day care of their son who is becoming violent toward other people and himself. So Ben and Jonah move in with Ben’s father, Georg, and Ben begins a daunting legal challenge to get his son placed in Highgrove Manor.

All of that would be enough to make a great story. But there’s so much more to Shtum. As Ben struggles to care for Jonah, he confronts the lifelong difficulties of his relationship with Georg, a Hungarian Jew who fled the Nazis at the age of nine as an orphan. Ben recalls his mother Myra, whose abrupt departure from the family, when Ben was a boy, has never been explained to him. There’s the family business, which Ben is slowly driving into the ground, his not-so-secret drinking problem and the real reason Emma wanted him to move out. There’s Jonah, whose simple joys — feather twiddling, bubble baths and toast — illustrate just how easy he is to love and how difficult to live with. Shtum keeps unfolding and unfolding like a set of matryoshka dolls and each painful revelation endears the characters to us more.

Jem Lester is a wonderful and compassionate writer. In explaining why he wrote this novel, which is based on his own painful experience, he said he wanted to write a book about autism that would be funny, that would be honest, and that would be his own. “I was truly fed up with being asked what my son’s ‘special talent’ was,” he writes. That resonated with me, as did this book — every lovely page.

Shtum by Jem Lester was published by The Overlook Press in 2018.

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