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At first, Kate Winslet thought it would be just another job. Cherie Blair, the wife of the former prime minister of England, Tony Blair, had sent the Oscar-winning actress a documentary from Iceland that needed an English-language narrator. Called A Mother's Courage: Talking Back to Autism, it was about Margret Ericsdottir's journey to discover whether her severely autistic 11-year-old son, Keli, would ever be able to speak. What Ericsdottir learns -- not only about her own son but also about so many kids who are nonverbal -- is astounding.
Winslet watched the tape. "To say I was moved sounds so very basic. I couldn't stop thinking about it," she says. "I was being asked, as an actress, to use my voice for children who have no voice." Winslet flew to England, where she was introduced to Ericsdottir, to record the narration. "I knew as soon as I met her that we would be friends. I also knew I couldn't just lend my voice to this documentary and go home." Since A Mother's Courage was released, in 2010, Winslet has helped launch the Golden Hat Foundation to raise money for and awareness about autism. (The title refers to a poem by Keli, who wrote about having a "golden hat" that allowed him to speak.) This spring she will also release a coffee-table book, The Golden Hat: Talking Back to Autism. It is a series of self-portraits by celebrities -- everyone from Meryl Streep to George Clooney -- sporting Winslet's jaunty trilby; they were told to say whatever occurs to them while wearing it. All proceeds from the book go to the cause.
In a candid, poignant, and at times funny interview, we spoke with Winslet about her mission and why she's speaking out for children who can't speak for themselves.
What do you think is the biggest misunderstanding about children with autism?
That they are not capable of understanding anything, that they are completely locked in their own worlds and aren't paying attention to anything around them or that they are disinterested. Even those closest to them sometimes believe that. And so often that proves not to be the case.
There is a moment in the film that is absolutely shocking: Keli, who has been assumed to be of low intelligence, starts spelling out words letter by letter and asks his teacher if he can learn to play the piano, because he's been making up songs in his head since he was little. I know. Amazing. One of the hallmarks of autism is that it's difficult for some people to integrate their senses -- to see and hear at the same time, for example. But that doesn't mean they haven't been listening. That doesn't mean they haven't been seeing. Once I realized this -- that many autistic kids have the same thoughts and feelings as a typically developing child but can't express them -- it cut me inside. My daughter Mia watched the film with me -- she's 11 now, but she was 8 at the time -- and she said to me, "Wow, Mum, imagine if I couldn't even tell you I loved you."
You and Margret seem to have a deep bond. Do you think there's a universal connection all moms have?
What connects us as mothers? It's true, when I met Margret there was this Moms on a Mission feeling between us [Winslet also has an 8-year-old son, Joe]. Like Margret, I am not a pushy mother in the day-to-day sense, but I would stop at nothing to do whatever I needed to do for the sake of my child. For me, motherhood is not about signing the check to get your kids into the best school; it's about giving them the freedom to be who they are.
Have you ever worked with disabled children before?
Yes, I was a spare pair of hands at a summer camp for disabled children when I was a teenager and there were kids there of varying disabilities. There was this beautiful tall young man there who was 20 or 21. I won't say he was treated unfairly, but because he didn't speak, moved slowly, and had significant sensory issues, nobody knew how to handle him. So it was a case of just managing his day. But there were moments when I would look him in the eye, and he would look at me, and I knew there was somebody in there. And I never forgot that experience. In retrospect, he was probably autistic.
How did the idea for the self-portraits in the hat come about?
I thought about the need to connect the nonverbal world with the world of people who'd done well for themselves through their ability to communicate. So one night I was brushing my teeth and I came up with this idea -- I would get this hat I had to all these people in the public eye and have them take a self-portrait wearing the hat. But I'm not the chick who's friends with famous people. I'm friends with mums on the playground. So then I thought, sh--, how am I going to do this?
Clearly I've been living in New York City too long. I would worry about the hygiene...
Oh no no no. Think of the great DNA in that hat.
But who knows? There are lice and things...
If Johnny Depp had lice, I don't think people would mind getting it.
[Laughs.] But anyway, you wouldn't believe some of the things I did to get that hat to people. Like, I gate-crashed a private function to get the hat to Bill Clinton. It was a dinner party of about 30 people, and my friend foolishly gave me a ticket. I'd just had minor surgery and I had stitches, and I was like, I don't care, I need Bill Clinton, f--- it. So I hobbled in to this party in my cocktail dress, and begged. Unfortunately he was surrounded by handlers who wouldn't let him put it on.
But I needed to try. And most of the time it was fine. A lot of the time it was just me racing around the city to different events. Once my children and I made a road trip to watch Michael Phelps swim in Baltimore, so we could get him into the hat.
Why didn't you just FedEx the hat?
No! I was terrified of losing it -- and I was sure I'd lost it several times. See, at some point I want to auction it off to raise more money.
You seem to feel the importance of giving back in some way quite profoundly.
Well, my father is disabled -- he lost his foot in an accident when I was young. It was awful, it caused all sorts of problems, both physically and psychologically -- and for a while my family was supported by a charitable trust. So I understand on a very personal level what a charitable organization can do.
But at any rate, I'm doing this because I want to. I don't need the world to think I'm Mother Teresa, and the last thing I want to do is come across as some celebrity who's had an epiphany about the world. It's just that in this case I could see a need, and I could do something to fill it.
How do you teach your children about giving back?
They get a little allowance every week, and they are given an opportunity to match what we put in the family charity box each week. They always put in part of their allowance, so I think their awareness of giving is present.
How is Keli, the boy profiled in the film, doing today?
Margret moved from Iceland to Austin, to be near the HALO Clinic, where Keli began learning how to communicate with a word board and typewriter. He's 14 now, very tall, and he actually has several words. He spends part of his time in a mainstream school. The thing is, this was a kid who was allowed to watch Teletubbies all day long because that's what his parents thought he understood. Now, at his new school, when the kids are playing Jeopardy, everyone wants Keli on their team. That's how smart he is.
One of the loveliest things...we spent last Thanksgiving with Margret and her family. There was this gorgeous moment when Margret and I were cooking in the kitchen, and Mia and Joe were just hanging out on the couch with Keli, watching television. That's what you want. You want typically developing children to see no barrier between themselves and the child who cannot stop moving his hands, and can't speak.
What do you feel grateful for?
I was thinking about this recently. My daughter was playing the lead role in her school play, and she did a super-great job. But of course there'd been a lot of nervousness beforehand. When it was all over, and we were in the car going home, I said, "Okay, for the next five minutes, everyone must make as much noise as possible." And we all just screamed. And I thought, I'm so grateful for their health, that I can watch them grow and change and run and leap; and for my health, that I can be there and be strong for them. But also, at that moment, I just felt so grateful for their voices.
To learn more about the Golden Hat Foundation or to make a donation, go to
The Golden Hat: Talking Back to Autism is about the importance of self-expression. But I also want this book to help people understand the gravity of a situation where there is so little progressive therapy, teaching, or research. The world is still struggling to know where to place people with nonverbal autism. Often they are institutionalized and never experience being part of a community, especially one in which they can learn to communicate and realize their full potential.
Proceeds from the book will go to the Golden Hat Foundation, a charity Margret Ericsdottir and I set up. Our immediate aim is to improve awareness about the capabilities of people living with autism. Our longer-term goal is to provide assisted-living campuses where those with severe autism can receive educational direction and job training in an environment that takes their individual strengths into account. We hope these campuses will serve as models to demonstrate these individuals' intellectual capabilities and in doing so encourage society to recognize how much we can learn from them.
There are approximately 67 million people worldwide with autism; roughly half do not have functional speech. Yet, as this book proves, there are ways to hear them. We just need to start listening. --K.W.
From The Golden Hat, by Kate Winslet with Keli Thorsteinsson and Margret Ericsdottir. Copyright © 2012 by Golden Hat Foundation. Reprinted with permission of Simon & Schuster, Inc., New York, New York.
Originally published in Ladies' Home Journal, March 2012.