Margret Ericsdottir produced a documentary, A Mother’s Courage: Talking Back to Autism, that explored her’s and other parents’ experiences with autism. It’s there she met and formed a strong bond with actress, Kate Winslet, who narrated her film. Wanting to do more and inspired by a poem Margret’s nonverbal autistic son, Keli, wrote using a letterboard, the two co-founded the Golden Hat Foundation. Their mission? “To change the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential. With proper education and career training, these individuals can truly realize their dreams.”
I was curious to find out more and Margret graciously answered all of my questions about Keli, Kate and their foundation in this interview:
What is the big dream for The Golden Hat Foundation?
Research indicates that within the next 15 years, more than 500,000 children in the US with an ASD diagnosis will enter adulthood. Many adults with autism are being cared for by aging parents, who in most cases will not outlive their children, leaving them with limited options for lifelong support.
While we continuously focus on ongoing awareness initiatives centered on highlighting the capabilities of those on the autism spectrum, our big dream includes the establishment of innovative post-high school campus that will truly honor all individuals with ASD by creating an environment that supports and respects their individual needs and strengths. In addition to onsite housing, numerous services will be available including career placement and training and an outreach facility used to train educators, professionals, and employers to learn various communication techniques and inclusion methods.
What steps are you, Kate Winslet, and your board taking to realize that dream?
Projects of this size take a tremendous amount of initial preparation and planning. Throughout the past few years we have accomplished a great deal of groundwork including thoroughly analyzing other communities – visiting many first hand – researching and evaluating funding options, in-depth discussions with autism professionals, and development of best practices.
Much of 2013 was spent meeting with government agencies, public officials, developers, land-owners, Senators, key representatives and the like. We understand the need to be keenly aware of the current and projected service gaps and what issues need to be addressed to optimize our campus and its services.
We have worked with Manhattan Construction and Boka Powell Architects on a preliminary design for the campus and a short video flyover is available to watch on our website.
How are you using your creativity to make an impact?
This is probably the biggest difference between the Golden Hat Foundation and other autism organizations. Our creativity begins with our unique approach to awareness focused on what autistic individuals can do rather than what they can’t.
We are privileged to have Kate Winslet as our co-founder and advocate. She has opened many doors and made it possible for us to share our mission nationally and internationally through highly visible individuals and celebrity collaborations.
Through Kate, we were able to produce our first creative awareness project, our book, The Golden Hat: Talking Back to Autism. The book was created to raise awareness and offer insight into the lives of those with nonverbal autism. Kate passed around her favorite hat to some of the most famous people around the world and posed the question, “what would you say if you had never communicated before but were finally given the chance”? Each celebrity provided their ‘first word’ quote and a picture of themselves wearing the hat. Also included in the book are actual emails between myself and Kate that tell the tale about the progress of Keli and how autism affected our lives and Kate’s efforts throughout the project. These emails are an easy read for the general public (our target audience) and were included to change negative perceptions and help people become more aware of the intelligence, sometimes hidden, inside people with autism.
Of course, there is the film that started our journey “A Mother’s Courage: Talking Back to Autism” (the Icelandic version was titled ‘The Sunshine Boy’). I produced this film a few years ago in an effort to help families affected by autism find a path in the vast wilderness of autism. This is how Kate and I first met. Kate watched the movie and graciously offered to narrate the English version. It was widely recognized and was asked to several internationally known film festivals. From there, HBO bought the film and re-titled it, “A Mother’s Courage: Talking Back to Autism.” It is available on DVD at our website, on Netflix, Amazon, etc. The proceeds from the sale all go directly to the Golden Hat and our mission.
The Golden Hat Walk for Autism is another creative initiative. This fun-filled event offers an uplifting experience filled with hope, provides a strong sense of community, and showcases available resources. The point of the event is to not only raise vital funds that fuel our mission and goals, but to promote autism acceptance, welcoming differences, and positive change. People can join from all around the world and the event website offers a platform for advocates and self-advocates to share their stories.
We believe in the power of self-expression and personal stories to change perceptions. This belief has created our blog program where we feature a guest post from one autistic advocate every month on our website and widely circulate it.
What advice or words of encouragement can you pass on to other parents whose child has just been diagnosed with autism spectrum disorder?
The path may be long and full of bumps, but it is a journey that can bring much happiness as well. Before autism, I took a lot for granted. I did not “stop and smell the roses” as much I do now, in fact, I probably rarely even saw the roses!
Keli has taught me patience, a deeper feeling of compassion, and above all else a tremendous capacity for love. I doubt there is a mom or dad out there that can’t say that the love they feel for their child is so much more rich and full than it probably would have been without autism.
Here is also a word of advice from Keli that he wrote for his English class. His assignment was to write a paper about how he had influenced someone.
I teach patience from my differences. It takes time to get to know me. … I taught one teacher the beauty in sitting outside and just being happy. Do not look at your watch, do not worry, just enjoy.
How can we as parents take action for our children in our communities?
Start by believing in the abilities of your own child. Read to them – age appropriate books. Even if they don’t seem to be listening, they more than likely are. Work with the schools to get the most academic education that you can for your child. If your child can not communicate effectively, look for solutions that work for your child. The Golden Hat Foundation strongly believes that parents and professionals should always assume intelligence first and then find ways to access it.
Once these children begin to receive an appropriate education, they can work toward becoming more independent.
How can we take action to help the Golden Hat Foundation?
There is much work to be done to fill severe service gaps and change the way the world looks at autism and we are always looking for support. Individuals can give back from any location and there are numerous volunteer opportunities available. One of the easiest and most meaningful ways to get involved right now is to join our Golden Hat Walk for Autism event as a ‘virtual walker.’ Virtual walkers can register to participate free and customize a page that they can share with their network. Virtual walkers are a vital component in our event because they share our mission in their communities while raising awareness and funds at the same time. The best part is, it couldn’t be easier to participate.
If people are interested in getting involved as a volunteer, they can email firstname.lastname@example.org for more details.
On a personal note, how is your son Keli doing?
Keli has been doing very well overall. He has his issues to deal with, both motor ability and visual impairment, on top of his autism, but he is a very happy young man and now he feels that he has a future. Besides working on his education he spends a lot of his free time on music, both listening and composing his own music. He will debut his compositions in Carnegie Hall on next December 4 – so mark your calendar and be sure to be in New York for a great experience.
Is there anything else you’d like to share about your journey or the foundation?
We are proud that our efforts have made such an impact already. We sponsored the World Autism Awareness Day at the United Nations, where we gathered some of the world’s most well-known autism professionals in a press conference to discuss the great potential within these autistic children and adults and the lack of funds being utilized to support his population.
We also have received an award for Autism Excellence from The Lurie Center presented by Dr. Margaret Bauman. Dr. Bauman’s dedicated career is best exemplified in her establishment and development of The Autism Research Foundation (TARF), The Autism Research Consortium (TARC), The Lurie Center for Autism and The Autism Treatment Network (ATN).
We have big plans at the Golden Hat Foundation and are working hard every day to make a meaningful difference for those with autism and their families.
Finally we want to emphasize that we believe that autistic people have unique strengths, perceptions and talents that deserve recognition and respect. We encourage everyone to presume competence and use a strengths-based approach in discussions around autism and awareness efforts.
For more on the Golden Hat Foundation:
Images courtesy of the Golden Hat Foundation