Kate Winslet's The Golden Hat is helping people with autism through learning and outreach. Picture: Supplied. Source: Supplied
How can you talk about your child without bursting into tears?” asks Kate Winslet. Those beautiful eyes I know so well from the big screen search mine, trembling with sadness.
“Because I’d never stop,” I mumble in reply.
Suddenly Winslet isn’t the big movie star; she’s one mother talking to another about a very real sadness we all risk when we have a baby - what if the child isn’t OK?
One of the most wonderful moments as a parent is watching your baby sleep in their crib as you imagine all the amazing things they’re going to do, all the experiences they’re going to have. Will they grow up to be a doctor? An athlete? An architect? When one of my twin boys was diagnosed with autism in 2003, at 18 months old, all those dreams vanished into thin air.
How could a child who hit every developmental milestone – who was talking and listening and being attentive - turn into a silent stranger who wouldn’t even look at me when I called his name? It happened over a few weeks - my happy, lively toddler became totally withdrawn.
Each week, 50 families in Australia go through the same experience. No one knows why autism happens or what causes it. If only we could pin the blame on vaccinations, then at least we’d know how to prevent it, going forward. But when you receive that news about your own child, it doesn’t feel as though there’s any way forward.
The hopelessness is the hardest thing to come to terms with, and the fear - not just of the here and now, but what will happen in the years to come. Who will look after my child when I’m not here?
“What struck me almost more than anything was that daily fear,” says Winslet. “Now that I’m more involved in the world of autism, and meeting families and spending time with their autistic children, every single parent clutches my hand as though I’m Mother Teresa and I can just take away their fears. I hope I can.”
The Oscar-winning actor is about to embark on a campaign for autism in a way few others could - she’s using her celebrity to educate the world about the disorder.
Since founding the non-profit organisation Golden Hat Foundation last year, the 36-year-old mum of two has been working to raise awareness and funds to build shared accommodation for young and mature adults with autism. Her hope is that it will be a place with a dignified environment and full-time care. That’s the dream.
Fundraising for the foundation kicks off next month, with a special collaboration with Lancôme. Thanks to Winslet’s close ties with the brand (she’s been an ambassador since 2007), the cosmetics company has taken up the cause and created a limited-edition make-up range, promising to donate 150,000 euros ($200,000) from its sales profits to the charity. Winslet is also producing a book that’s due for release early next year.
“I’ve always quietly supported charities, as any person in a privileged position would do - or you’d hope they would,” she explains. “But what struck me so deeply is how huge this problem is globally and how rapidly the disorder is growing.”
According to the Olga Tennison Autism Research Centre at Melbourne’s La Trobe University, one in 110 children in Australia has some degree of autism. And the most recent statistics show the rate is just as high internationally - an estimated 67 million people around the world have the disorder.
Winslet’s children, Mia, 11 and Joe, 7, don’t have autism, but it was her contact with another family that brought her attention to the issue. In 2009, she was asked to do the voice-over for a documentary about autism, originally recorded in Icelandic.
Called
A Mother’s Courage: Talking Back to Autism (aka
The Sunshine Boy), it follows a woman called Margret Ericsdóttir on her search for a style of education that would help her 11-year-old son Keli to learn despite the limitations of his disorder.
“It was very much a chance sort of thing,” says Winslet. “I was sent a DVD in a FedEx package, with a cover letter from Cherie Blair [wife of former British prime minister Tony Blair]. Cherie is good friends with the first lady of Iceland, Dorrit Moussaieff, who helped Margret with the financing of the film.
“The cover letter said, ‘Dearest Kate, a friend of mine is connected to this film. It’s a very powerful documentary and they were wondering if somebody would provide an English-language narration, so they can try to get international distribution.’
“Straightaway, I sat down and watched it with Mia, who was eight at the time. I was so moved and Mia wept. She turned to me and said, ‘Mum, oh my God. I can tell you I love you; I can put my arms around you and it doesn’t hurt. I can tell you when I’m in pain.’
“Then she added, ‘We really are so lucky, Mum - we must never take that for granted.’ So, of course, I did the narration.”
The film reveals the reality of life for Keli, who has moderate-to-severe autism and major sensory issues common to the disorder. He can’t look straight ahead, so he tilts his head and looks out of the corners of his eyes; he’s constantly stimming (repetitively waving his fingers or a piece of plant in his peripheral vision) and he doesn’t speak. As with most autistic children, he doesn’t seem to understand what’s going on around him. To anyone else, his might appear to be a hopeless case, but not to his mum.
Ericsdóttir refused to give up on him and, armed with a video camera, took Keli to the US. In Austin, Texas, she found HALO (Helping Autism Through Learning and Outreach), a school where Soma Mukhopadhyay was teaching autistic kids to communicate using a letter board - a technique that had been successful with her own autistic son, Tito. It turned out, the children, who’d never been able to communicate before, had a lot to say; they had a sense of humour, opinions and they could spell.
It reminded me of the prognosis of my son, Henry, at the age of four. After almost an hour of testing, I was told he’d never talk, never read, would have a mental age one-third of his real age, a low IQ, and would always need full-time care. But, like Ericsdóttir, I refused to accept it.
Autistic children do hear you and understand what you’re saying - Mukhopadhyay’s work proves it.
“I can’t change the rapid growth in the autism rates,” continues Winslet. “But to be trapped inside one’s own body, when you have genuine feelings and a real capacity for love and emotion, normal intelligence and sometimes higher IQs than the majority of your peers, to be not just misunderstood,
but not understood or heard at all…
“Near Reading, where I grew up [in the UK], there was a summer camp for disabled children,” she recalls. “They were looking for kids to be helpers and my mum enrolled me and my sister, Anna – I was 11, and she was 14. It was a little terrifying because we were dealing with kids with behavioural issues and no one really knew what was wrong with them.
“There was one boy who was extremely handsome. He was about 14 or 15 years old and he made repetitive movements with his hands. The staff kept saying, ‘Just make sure he’s comfortable; he doesn’t really know what you’re talking about, but talk to him anyway.’
“I remember helping him to stand up out of a chair once. As I watched his feet to make sure he didn’t trip, he squeezed my hands very tightly. I thought, why is he squeezing my hands? I wondered if they were uncomfortable, but then he did it again.
I looked up at him and he was looking directly at me; he was absolutely trying to tell me something. It was one of those moments when everything stops - it was a genuinely overwhelming moment in my life. I just knew there was a person in there who couldn’t get out. Now that I know more about it, I think he must have been autistic. But among the adult group leaders, the word ‘autism’ was never mentioned, not once.”
Ignorance is one thing Winslet wants to change. About four months after her work on the film, she received a poem written by Keli called
The Golden Hat.
“He’d achieved so much in such a short time. I thought, I have to do something,” she recalls. “I was brushing my teeth when I came up with this idea to get a hat and ask lots of high-profile people from all different professions to wear it and somehow make the connection between these creative people with a voice and the world of people who are so limited in their ability to express themselves. That’s how I came up with the idea for the book.”
The Golden Hat: Talking Back to Autism by Kate Winslet and Margret Ericsdóttir with Keli Thorsteinsson (Simon & Schuster, $29.99) is a collection of self-portrait photographs of some of the world’s most famous people, all wearing Winslet’s old trilby hat.
“George Clooney is in the kitchen; Justin Timberlake is by his keyboard,” explains Winslet. “I have these images of people that they’d never consent to a photographer taking, but because it’s on their own terms, in their own space, they really are intimate. It’s fascinating to have this little window on their world.”
Winslet asked each of the star subjects to imagine what they’d say if they could only say one thing. “So everyone has given a quote that will accompany their picture. What they’ve come up with is very powerful.” Once released in April, all proceeds from the book’s sales will go to the Golden Hat Foundation.
One thing that’s prominent during my chat with Winslet is her strident denial that she’s doing this campaign to promote herself: “I read about celebrities recruiting other celebrities to do something amazing and make themselves all look good. I don’t need to raise my ****ing profile, do you know what I mean? It’s not about me. I just came up with the idea.”
I can understand her dismay. Despite the time and energy she’s dedicated to the cause from the start (she refused a fee for the film narration), when she was presented with a humanitarian award in Madrid in June, the media coverage was all about the figure-hugging dress she wore on the night.
But what’s clear is how truly committed Winslet is to making a difference. “To live a life of dignity, independence and fun - to whatever level you can manage - these are things every human being has a right to,” she says. “The situation with autism is growing so rapidly, it’s terrifying. If there’s something I can do, what have I got to lose?”
As for my Henry, he’s 10 now. He reads, he sends emails, he talks - albeit in a rather limited fashion. He goes to a small school in Sydney called Giant Steps, set up by parents of autistic kids. It’s a major fundraising effort to keep any special school open, but it works.
Henry may not grow up to be a doctor, an athlete or an architect, but he’s happy. Isn’t that what every kid deserves?
For more information about the foundation’s work, visit
www.goldenhatfoundation.org.
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The Golden Hat
This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.
- Keli
