Each day people go through the same routine. They rise with the sun, or listen to the raging morning thunder, breathe deep the first scents of spring, or observe a painting in progress from the window: sparkling white snowfall dancing in the sky. Breakfast is next on the agenda. Then they dress for work or scan the job listings in the newspaper. They could be a parent, child, teenager or grandparent dealing with the ups and downs of daily living.
Before most people retire for the night, they might watch a comedy or drama, or perhaps catch up on reading. Night can either be a welcome guest keeping people safe and dreaming good dreams, or the darkness can be an intruder, robbing people of a good night’s sleep. This kind of life is to be expected. But it is not the kind of life for many autistic individuals.
Think what we might feel if we didn’t establish a connection to day and night; if we could not speak or tell somebody where the physical, mental or emotional pain is located in our body and mind; that treatment by a doctor is urgent; or words of love would not be heard by mothers, fathers, brothers, sisters, other family members and friends.
For many years, this had been Keli Thorsteinsson’s world. Keli is the focus of “The Golden Hat: Talking Back to Autism,” a lovingly crafted book by Kate Winslet and Keli’s mother, Margret Ericsdottir. It also features some of the most inspirational, thoughtful, intelligent, humorous, sad and delightful poetry by 14-year-old Keli, who has endured one of the most dreadful forms of autism: nonverbal autism.
While all types of autism abuse children, teens and adults, nonverbal autism leaves parents and other authorities guessing what their son or daughter can’t say. Without speech or some type of communication, nonverbal autism is frustrating for everyone.
The book’s title, “The Golden Hat,” is taken from one of the poems written by Keli.
Winslet became involved with the plight of Keli and his mother after Winslet provided the English language narration for the mother and child’s documentary.
Released in 2010 and directed by Fridrik Thor Fridriksson, the documentary from Iceland originally was sent to Winslet by Cherie Blair, wife of former prime minister of England, Tony Blair. Cherie sent the film to Winslet because there was a need for an English language narrator, who just turned out to be Winslet, who was tremendously moved by the film.
The film, in turn, encouraged Winslet to think of a way to help Ericsdottir, her son and others in their struggle with autism. She assisted in founding the organization Green Hat Foundation, with hopes that money could be raised for research and that the public would become more aware of autism and how the disease is being viewed in a different light today.
Furthermore, Winslet got a grand idea to feature celebrities in the book. She asked many celebrities to participate by wearing a hat, the same hat, while presenting self-portraits of themselves and perhaps explaining in a quote or two something that represents how they feel while wearing or holding the hat.
Winslet was happily shocked by the number of celebrities who gave up their time to help in the journey to understand “self” and how self is a key element in anyone, whether autistic or not.
The goal of the foundation, the goal of Keli, his mother, Winslet and anyone else who wants to have a serious “talking back to autism” is to improve awareness about the capabilities of people living with autism. A 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 into account their individual strengths.
In the book, Winslet offers facts about autism. Today, there are 67 million people worldwide with autism, about 50 percent of whom do not have functional speech. One in 88 children under eight is diagnosed with autism.
Hope is visible on every page of “The Golden Hat.” Young people and older ones with autism proudly show their own portraits and speak freely about their autism.It is interesting to note that many of those who have autism actually “know” what’s going on in their environment. This had been a type of behavior once thought to never exist by parents and professionals.
What was once considered a never-changing attitude toward autism has now convinced many parents and professionals that those with autism, especially in Keli’s case, are far more intelligent than the assumed level of education limited to that of a two-year-old.
Winslet first met Keli’s mother in London and both continue today to be extremely close, as is seen in the numerous e-mail exchanges between the two mothers. Keli and his mother moved from Iceland to Austin, Texas, to be near the HALO clinic, where Keli began mastering communication with a word board and typewriter. Keli makes strides each day.
Winslet, Keli and his mother offer sincere and painful accounts of Keli’s suffering from autism. Winslet has two children of her own and thanks God each day for being blessed with their good health, ability to express emotions, their intelligence and laughter and courage.
Winslet’s children understand how awful autism can be, yet they also feel a sense of love, wonder and pride as they see Keli grow and develop interests of his own, such as in music, writing, art and theater.
There also are some areas in the book that are both funny and sad at the same time. Keli’s brothers interact with their brother and always keep in mind that he is “The King,” a nickname they gave him because they understood how much attention he needed and deserved. They call him “The King” without jealousy.
Carol Wright is a freelance writer. She resides in Winfield.