Printers Row Journal
April 1, 2012
The Golden Hat: Talking Back to Autism
By Kate Winslet with Keli Thorsteinsson and Margret Ericsdottir, Simon & Schuster, 288 pages, $29.95.
In our family’s early days of dealing with severe autism, I found myself wishing that every politician and Fortune 500 CEO would have a child with autism.
Back then -- less than twenty years ago -- autism was still being reported as a 1-in-10,000 disorder, compared to the current 1-in-88 rate. Our local big bookstore had exactly one book on their shelves with “autism” in the title. Politics and human nature being what they are, I knew that increasing funding for research and treatment would be a teeth-pulling chore that would need powerful people and organizations to push it.
What a difference a generation can make.
Certainly a big part of the increased frequency of autism is the stretching of the diagnostic definition to embrace high-functioning and Aspergers Syndrome individuals. Remove that population and the frequency would plummet – but would remain higher than the historical 1-in-10,000.
Everyone seems to know someone who is dealing with autism, including politicians and CEOs. And celebrities.
Autism plus celebrity is not always a good match. The combination of questions about autism and a star’s public platform can bring gobs of attention to quackery and wishful-thinking “cures” while drawing eyes away from the often mundane and methodical research that will someday provide the truth.
These well-meaning celebrities tend to base their wisdom on a sample of one – usually their own child. Think of autism as one of those parable elephants being groped by blind men. Depending on what they touch, or what your particular experience with autism might be, that’s what you understand to be the truth. And when you’re on magazine covers, these granules of personal certainty can become public nuisances to many whose experiences are different.
Kate Winslet’s “The Golden Hat: Talking Back to Autism” isn’t so much trumpeting a treatment but a grand plan. The book and the foundation it has spawned (www.goldenhatfoundation.org) “will raise money to build innovative and specialized campuses which will offer opportunities for education, job training, social supports, recreation, and assisted living.”
Severe autism is usually brutally expensive for families, so if "The Golden Hat" can help people crippled by the disorder and their families crippled by the costs that last a lifetime, then three cheers for Winslet and her chapeau.
Winslet provides an introduction describing how her relationship with Keli Thorsteinsson, a boy with severe, non-verbal autism, and his mother, Margret Ericsdottir, led her to The Golden Hat. The title is from a poem by Thorsteinsson, included in the book along with contributions by his cohorts, all having learned how to communicate in writing through intensive therapy.
Ericsdottir also tells her story, followed by nearly 30 pages of e-mails between her and Winslet that chart the book’s genesis and their evolving relationship. The book wraps with a handful of additional Thorsteinsson contributions, affecting in their guileless tone, and especially powerful knowing how much work, by Thorsteinsson along with other dedicated helpers, was needed for him to finally be able to express these thoughts.
Winslet’s A-listers were each sent the hat to wear (or otherwise include) in a self-portrait and to write "a personal statement about what their first words would be if they too were unable to communicate but suddenly ‘unlocked’ after years of silence.”
The bulk of The Golden Hat are these photos and quotes from the likes of Kobe Bryant, Oprah Winfrey, Ellen DeGeneres, Penelope Cruz, Elton John and more, altogether around a hundred big names and faces, though a few, like Woody Allen, took “selfless” portraits, faces hidden. The snapshots range from simple to artsy, and the quotes cover even wider terrain, from a basic “Love one another” by Reese Witherspoon, to George Clooney’s funny “I’m sorry about ‘Batman & Robin.’” It’s reminiscent of seniors’ high school yearbook pages.
So, while the world waits for the big answers about severe autism, such as what causes it and how to prevent it, the truism that nature abhors a vacuum describes why an array of interventions are what we have to get us through.
As research aided in part by autism awareness-generated dollars continues, we can only hope that the day is not too far off when "The Golden Hat" will be seen as an artifact from the dark ages of autism. Until then, it is an easy way to help the cause and improve a coffee table’s library.
David Royko edited "Royko In Love: Mike's Letters to Carol" and wrote "Voices of Children of Divorce." His stories about autism can be found at davidroyko.com.