If we don’t believe that anything is possible for our children, who will?
Last week, I had the distinct pleasure of speaking with Margret Ericsdottir, Director of the Golden Hat Foundation. Going into the conversation, I knew almost nothing about the foundation. I knew that it involved the beautiful, talented and gracious Kate Winslet. I knew that last year, they had published a book. And, well, that was about it.
I have since received a copy of the book, which is stunning. Its goal, I now know, is to use the bright lights of Hollywood to illuminate the challenges — and the potential — of non-speaking autistic people. The book contains 100 self-portraits of celebrities, each wearing Kate’s hat along with each of their answers to the question, “If you could say just one thing, what would it be?”
Margret and I spent a lot of time talking. Far more than either of us had planned. But that happens, doesn’t it? When we start talking about what’s possible, it’s hard to stop.
I asked her what makes Golden Hat different from its peers. There are a lot of autism organizations out there, I said. Why another?
Some focus on science and research – the why and the how of autism. Some focus on services – the here and the now of autism. Some focus on legislation and planning – the future of autism. According to Margret, Golden Hat is focusing on raising a very specific kind of awareness – that of the endless possibilities of autism.
Margret is, before anything else, a mother. She speaks of all three of her sons with a mother’s gentle pride and aching love. When the conversation turns to her non-speaking, severely autistic son, Keli, Margret speaks, above all, with respect.
I asked her why she began Golden Hat. Why not just join forces with another foundation already in existence, I wondered. Her answer was simple. “Bare necessity.”
I asked about her journey. She told me about how, after years of trying different methods in vain, when Keli was twelve, they discovered that he, now soon to turn 16, could communicate using a letter board. Her voice all but danced on the other end of the line as she described that revelation as the “liberation of his voice,” as an opportunity to “unlock his intelligence.”
She spoke of the importance throughout the process of “respecting and acknowledging his individuality as Keli.”
Despite their current success, the road to this point was not an easy one. There was a time, Margret said that she was ashamed to admit, when she had given up hope. After being told that Keli lacked the intelligence to learn, that he’d never be able to break out of the loop of frustration that he was living in, that, really, there was nowhere to turn. She lowered her voice as she admitted that she had felt empty and powerless. That she couldn’t take care of her own child.
“For my two older boys,” she said, “everything is choreographed by society. But in autism world, it’s a world of isolation and limitation because so many people are uninformed.”
Once she and Keli had found the magical letter board, her mission became clear. Everywhere she turned, she said, it felt as though the focus was on so-called ‘higher functioning’ autistics. Most of the parents of non-verbal kids that she met in her travels didn’t know or didn’t believe that there could ever be a way for their children to communicate. Many of them had been told, as she had in her native Iceland, that their children simply lacked the intellect to learn. She was determined to spread the word that there was, indeed, hope for kids like Keli. That early intervention mattered. That communication in some form was, ultimately, possible. So she set about creating a documentary to spread the word. She laughed, recalling that if she’d known how much work it was going to be, she would never have done it. But, armed with a message that she felt compelled to share, she persevered.
Through the documentary, she hoped to help find a way to address the situation in the here and now, as it is today. To help to find solutions for those severely impacted by autism. To bring awareness to just how many autistics are living without any method of effectively communicating with those around them.
She told me what a sobering experience it had been when she realized just how many of her assumptions about Keli’s preferences had been wrong. How she’d always thought that his favorite color was blue. Once he was able, he would tell her it was red. How she assumed his favorite restaurant was McDonald’s. On his letterboard, he explained that he prefers sushi. Her guesses weren’t stabs in the dark. They were a mother’s very best attempts to know her son through careful, loving observation. To respect the choices that she THOUGHT that he was making. But she was wrong. And she was heartbroken.
“These are human beings that we’re talking about,” she said, her voice trembling with urgency. “Human beings with their own dreams and desires, who deserve to be able to communicate them, and to learn, to participate in and to contribute to society not just despite but through their differences. They are different,” she said. “And that’s what’s beautiful.”
Ultimately, Margret explained, Golden Hat’s goal is to facilitate creation of assisted-living campuses, run by and for autistic people. She envisions these campuses as flexible, self-run, and, above all, fully integrated into the communities in which they reside. She spoke of community events in the centers, an emphasis on life-long learning, places where no one would speak about another human being in front of them rather than to them. Places where autistic people would be taught academics along with self-care and life skills, music and art and science and math along with vocational skills. A place where they would be encouraged to leverage their strengths and to benefit from their own contributions. Places where respect would be paramount.
The vision is big and bold, perhaps even revolutionary. Alas, the details of plans to bring it to life are still sparse. For now, Margret and Kate are focused on creating their next book, to be followed by another documentary. The goal of which remain the same as their predecessors – to spread awareness, not just of autism, but of possibility.
Click on the book to see inside it.
To learn more about Golden Hat, click HERE.