When her son was only 10-years-old, Icelandic mother Margret Ericsdottir was told that her child had a severe form of nonverbal autism. Medical professionals informed her that Keli, her son, would never be able to communicate with another human being and should be institutionalized for the rest of his life.
Unwilling to give up on her child, Margret set forth on a mission to help Keli learn how to communicate. To help raise awareness of her son’s condition, Margret took a camera crew with her on her journey and thus created the documentary, A Mother’s Courage: Talking Back to Austism.
After being picked up by HBO for distribution to international audiences, the inspiring film found its English language narrator in Academy Award-winning actress Kate Winslet. But after meeting Margret and Keli, Winslet was inspired to do more than just lend her voice.
“I did the recording, I met Margret and we became very close friends. And I went home on the train and I just had this feeling of ‘that’s not enough. That can’t be it. I can’t have just given my voice, oh clever me, what’s that about?’” Winslet recalled while appearing on Live With Kelly!
Not too long after, a new idea came to Winslet while she was brushing her teeth one morning. What if she teamed up with Margret to create a book of portraits of famous people around the world? These celebrities could use their public platforms to give their voices to those who couldn’t speak out for themselves. And in turn, they would begin to spread awareness of this condition that impacts approximately 67 million people worldwide.
Together, Winslet and Margret went to all sorts of extremes to put together their book, The Golden Hat: Talking Back To Autism. Each participant took a photo with Winslet’s favorite fedora and answered the question, “If you were unable to communicate your entire life until now, what would be your first words?”
Featuring portraits of celebrities such as Meryl Streep, Leonardo DiCaprio, Johnny Depp, Christina Aguilera, Justin Timberlake, Elton John, Julianne Moore, Oprah Winfrey, Zac Efron and James Franco, The Golden Hat: Talking Back To Autism is a true labor of love. All proceeds from the book (published in March by Simon & Schuster) benefit the charity and awareness organization that Margret and Winslet co-founded, The Golden Hat Foundation.
Following her recent appearance at the United Nations for World Autism Day, Margret chatted with me about the book, collaborating with Winslet, her son Keli, how you can contribute to the cause, and much more.
Alex Nagorski: Can you tell me a little bit about how the format of this book came about? How did you and Kate decide that taking portraits of these public figures was the way in which you wanted to spread awareness of your message?
Margret Ericsdottir: It was magical actually. One day I received an email from Kate saying that she had a great idea for fundraising, but didn’t have time to explain it now … she just said that it involved a hat and a lot of famous people.
I thought to myself that it was strange she said a “hat,” because Keli had just written a poem called, “The Golden Hat” that same day:
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.
I sent the poem to Kate, and she was so surprised by Keli’s poem and how similar it was to her idea that she called me and told me all about her plans to make this book. We both felt like it was more than a coincidence and that it was meant to be. So we named our book and the foundation after the poem.
AN: On April 2nd, you appeared at the United Nations for World Autism Awareness Day. From the time you shot A Mother’s Courage to today, how much (if at all) do you feel autism awareness has increased on a global level?
ME: Autism awareness has been very successful here in the States for the most part, but in other parts of the world these individuals’ rights are being ignored. I have had many emails and Facebook comments from people around the world who want to know more about how they can help their child and how the conditions in their country do not allow them the treatments and interventions that we are so privileged to have here in the US.
As you mentioned, we hosted World Autism Awareness Day in conjunction with the United Nations this year. We had a press briefing regarding those with nonverbal autism, as that is our focus at the Golden Hat Foundation. As I said, it seems autism awareness in general is very good here in the US, however, people know very little about those with nonverbal autism – which represents nearly half of those with autism. We are working hard to bring awareness to their need for effective means of communication and their right to receive an academic education.
AN: In a recent Ladies’ Home Journal interview, Kate told a funny story about how she “gate-crashed a private function to get the hat to Bill Clinton.” What are some other humorous or non-traditional ways in which you and/or Kate attempted to get the hat to a particular person?
ME: We really became quite fanatical about the hat. For the longest time we would not mail it. It was hand delivered and even flown first class with someone across the ocean. There were only a couple of times that we did send it via courier and we all held our breath until it arrived.
When I was taking the hat once to Conan O’Brien in his studio, he was trying to get a picture of the hat while he was using hairspray. I kept thinking that he had gotten so much hairspray on the hat that it will never come off his head! I wasn’t sure if I should tell him to stop or not. Have you ever seen Conan? He is like 6 foot 7 or something!
AN: Of all the celebrities who contributed to this book, who’s answer surprised you the most?
ME: Of course the funny ones are cute, like George Clooney’s, “Sorry about Batman and Robin” or Woody Allen’s, “Get off my property!”, but the one that struck the biggest cord with me was Elijah Wood. It seemed to me he totally understood what we were asking when he answered, “I exist and I am vital.”
AN: Do you feel that the accelerated rate at which technology is granting people access to instant communication wherever they are is more beneficial or harmful for our society? And how do these rapid changes impact people with nonverbal autism?
ME: Although I feel most kids these days get too caught up in social media, it is the most exciting time for those with nonverbal autism. The technology that now exists has changed many of their lives. iPads and iPhones have revolutionized this industry. Now, what used to be unaffordable is well within the means of school districts and even families to own. There are amazing new apps for those with autism – like Assistive Chat, which allows the user to type in what they want and it says it out loud.
Also with all of this technology comes the ability to work from home. When these individuals are given an effective means of communication, and are able to get an academic education, they will be able to have careers. Not just jobs folding towels or wiping tables. Working from home will allow them to “fit in” more functionally at a job.
AN: The book is named after a poem that Keli wrote about a magic golden hat that enables an autistic boy to speak. How important do you find art to be as a tool for self-expression for those with nonverbal autism?
ME: Nonverbal autism is a spectrum. I like to think of it as just another class full of students, some will like the arts, some will like math, some will be good at English, others will be good in science.
Keli loves poetry. He almost always expresses himself in some poetic manner. While another good friend of Keli’s (also nonverbal) makes jokes all of the time. Still another likes to discuss his political views.
AN: How much do you think the representations of autism in popular culture (i.e. films like Adam or Rain Man or books like House Rules by Jodi Picoult) shape the way that autistic people are viewed to those who might not be entirely familiar with autism?
ME: I think any use of those with autism in media today brings more awareness and acceptance. The new show Touch with Keifer Sutherland stars a boy with nonverbal autism. He is not representative of this population, but they have shown some of the difficulties of having a child who does not speak. This will only bring more awareness to our cause.
AN: You and Kate have become very close friends over the past few years and together founded the Golden Hat Foundation. Do you two already have plans for another collaboration after the publication of this book?
ME: We discuss different ideas all the time! Kate is an idea person and is so whimsical! It is fun to talk about all the possibilities. Yes, we have some things up our sleeve … you will have to stay tuned to find out what!
AN: Other than purchasing the book, what are some ways in which people can help spread awareness and help make a difference for people with nonverbal autism?
ME: We need to spread awareness about the needs of those with nonverbal autism.
Talk to your school district and ask them to “Honor Intelligence.” Ask them to make sure they talk “to” these kids and not “about” them when they are present. Ask them to assume intelligence if a child can not communicate yet. Ask the schools to work toward getting effective communication strategies in place for all those who are nonverbal (or have nonfunctional speech). This means going beyond PECS and other picture programs. They need to learn to write, type, or point out words, even eye gaze can be used to spell words. Someone once said, “When you have 26 pictures, you can have 26 items. When you have 26 letters, you can have the world.” Then ask them to make plans to get these individuals an academic education. Life skills are important, however it should not be at the expense of an education.
You can of course spread awareness by giving a copy of our book, The Golden Hat: Talking Back to Autism to teachers; or wear one of our shirts that say, “Honoring Intelligence”; or start a new “Follow That Hat” campaign on our website where you can raise awareness for nonverbal autism at the same time you raise money. This campaign is fun and whimsical and allows everyone to fundraise in any manner they choose. Once $500 dollars is reached, you will receive an actual “golden hat” in the mail that can be worn to tell others how important this issue is to you. Or just have some fun by donating online and adding your face to our Golden Wall … Facebook it and make it your profile picture and let others know what the Golden Hat stands for and why it is important to you.
Originally published on PopBytes