Karen HOCKNEY
A couple’s quest to understand their son has resulted in a groundbreaking documentary, says
W‘This film is a love letter to Joss and to all autistic people’
hen Stevie Lee and Jeremy Dear’s son, Joss, was diagnosed with autism at the age of two, she and her husband set out to do everything they could to understand his world. “Our son’s behaviour at times mystified us; his love of doing certain things in a routine, his focus on something or the way he would flap his hands around,” says Jeremy.
“We were keen to find answers or clues on how best to help him.”
“In many ways, Joss was the perfect little boy,” says Stevie, “but he could be on fire or ill and he couldn’t find the words to tell us. Joss just accepts pain, he doesn’t question it.”
His obsession with water had him rushing into freezing cold lakes and fountains in the middle of winter.
“There would be no shudder. His lips once went blue after he climbed into a fountain in November, but he just didn’t feel the cold.”
Then in 2013, Stevie tuned into a radio programme featuring extracts from an extraordinary book about the innermost thoughts of a 13-yearold autistic boy.
The book, The Reason I Jump, is a memoir by Naoki Higashida, a Japanese teenager who has nonverbal autism. Higashida lists 58 questions he is often asked, from “Why do people with autism talk so loudly and weirdly?” to “Why do you line up your toy cars and blocks?” and why he sometimes jumps (“It’s as if my feelings are going upward to the sky,” he writes). His answers provide a fascinating and illuminating account of what it is like to have autism. Translated into English by Keiko Yoshida and her husband, the British author David Mitchell, in 2013, it has sold more than one million copies.
For Stevie and Jeremy, reading it felt like sliding another piece of the puzzle into their son’s life. “It was a revelation in opening a door to the possibilities behind our son’s behaviour,” says Jeremy.
“I made big photocopies of the pages and put them all over our kitchen wall so that anyone dealing with Joss could read them,” adds Stevie. “We bought the book for everybody we knew.”
Eight years on, the couple, both filmmakers, have produced a beautiful and unflinching documentary inspired by the book, portraying the sensory experience, frustrations and joys of five nonverbal autistic youngsters from across the globe. The film was released on Friday June 18.
Joss, now a boisterous and energetic 16-year-old with an obsession for Pingu, is one of the five. Footage of him as a toddler obsessed with light and water is interwoven with the stories of Amrit, Jestina, Ben and Emma and also charts his parents’ heartbreak as they decide to move him to a residential school.
The couple hope that the film will continue the work of the book in raising awareness of how people with autism think, feel and live, and challenging stigma and stereotypes around neurodiversity.
When Joss was diagnosed, Stevie recalls: “We were ready for it, that was just what having a child was like for us but the world is not welcoming to autistic people.”
When Stevie was 40, she was diagnosed with breast cancer and over three years underwent chemotherapy and a double mastectomy. “Joss was three when I lost all my hair and he didn’t notice,” she says. ‘Then I had a double mastectomy and he didn’t notice. Joss doesn’t see you, he feels you and for him, nothing about me had changed. I never worried about looking different and having no eyebrows because Joss didn’t care.”
When puberty hit at 11, however, everything changed. The couple also have a daughter, Bebe, 10, and struggled to cope as Joss, already 5ft 11in, had mood swings and higher anxiety. “Puberty woke Joss up to his situation,” says Stevie. “Jerry and I cotton-wooled him to make things easier for him. Things didn’t break, things never ran out. We didn’t teach him about disappointment, which was a mistake. It was like he woke up angry, frustrated and very anxious about his place in the world.”
In many ways though, Joss is no different to any other older brother. “He’s always been very protective of Bebe and when she was tiny, he would bring her back to us if she wandered off,” recalls Stevie. However, in 2017, Jeremy, 58 and Stevie, 53, reluctantly decided to move Joss, then 12, out of their home in Wandsworth, south London, to Bradstow residential school in Broadstairs, Kent.
“It was the right decision for him,” says Stevie. ‘He wasn’t sleeping and we couldn’t allay his anxiety. He needed everything so regimented to feel safe. He was upset, stressed and unhappy all the time. He broke things a lot and became accidentally self-injurious, unaware of crashing into things. It’s very hard to discover you’re not the right people to do the best for him.”
Jeremy adds: “We miss him enormously. We lived 24/7 with this amazing individual who now spends significant periods away from us but the school staff do an amazing job and Joss has really benefited.”
They regularly visited Joss and he came home every three weeks, but last year Covid restrictions meant they did not see him for several months.
“Sometimes the school was completely locked down and he didn’t know when he would see us again,” says Stevie. “It’s been traumatising.”
The knowledge that Joss is thriving is at odds with her maternal desire to have him back at the heart of their family. “There’s never a day when I don’t wake up and realise that Joss isn’t living at home. After diagnosis, I thought maybe I’d never have to share him with anyone or wave him off to university and I’d never have an empty nest.
“That felt like an incredible positive. I’m sad because life is not as much fun without Joss. The only thing I can hold on to is that he is happier and more secure.”
With the other youngsters in The Reason I Jump, Joss shines a brighter and more understanding light on the complications – and inherent joys – that come with being autistic.
“It’s a very intimate portrait of our family but we couldn’t ask other autistic families to take part if we weren’t part of it ourselves,” adds Jeremy. “Joss really enjoyed filming with the crew and being the centre of attention. I hope the film starts more understanding, kind conversations which include autistic people. Many write and blog and are their own best advocates. We need to be more tolerant of people who think in a different way to us. They’ve got things to say, we just need to listen.”
Stevie adds: “This film is a love letter to Joss and to all autistic people, who are incredible. Joss lives in the present and I’ve had 12 years of being taught by the greatest guru to enjoy the moment.”