Autism Propels Author to Overcome Limits, Labels

by Kimberley McGee
ido kedar

An autism diagnosis at a young age was a brief moment in an otherwise adventurous and fulfilling life. Through the use of an iPad and other devices, Ido Kedar has learned to communicate with others despite not being able to speak. The 23-year-old autistic author has written two books and serves as a board member for a non-profit group that advocates on behalf of all non-speaking people to raise  awareness. Although many may see the label as limiting, it does not define the abilities of the individual.

 

“Ido’s story is one of triumph of the indomitable human spirit,” said Tracy Kedar, his mom, who is also a mental health therapist specializing in helping non-speaking autistic individuals. “He is an inspiration to anyone who has struggled.”

 

Not talking is not the same as not thinking. 

 

National Autism Awareness Month

In honor of National Autism Awareness Month, we were able to ask Ido about what propelled him to write and the obstacles he faced and overcame as a non-verbal autistic child in a world often misinformed about the abilities of severely autistic children and adults.

The vibrant author is believed to have written the first novel by a non-speaking autistic person, In Two Worlds, which was praised by Kirkus Reviews and Publishers Weekly Booklife Prize. He also is the author of a book at age 15, Ido In Autsimland, a stunning memoir that brings tears of frustration and joy from every reader. 

 

Breaking His Silence

 

Completely silenced for the first seven years of his life – and now still without the ability to speak save for the use of technology – Ido remains quiet no more. His human interest story also provides insights on parenting, education, and how the experts fail to treat those who can’t speak for themselves. As an autistic author, he offers incredible insight and a deeper understanding of autism.

 

“I hope to have people outside the autism community discover my books,” Ido said. “I believe they have the potential to shed light on the most misunderstood people – non-speakers – who are trapped by their own bodies. In reviews, readers compare my novel to other major works that exposed prejudice and ultimately led to societal change. Perhaps society is ready for a breakthrough.”

 

 

 

Fear and Faith

What would you like people to understand about autism and those that have it? Not talking is not the same as not thinking. Odd movements, caused by a motor/mind disconnect does not mean a person can’t understand words, right from wrong, or care about others. 

Mostly I want people to not be afraid of “weirdos” who don’t speak and to be polite and respectful to their fellow human beings who may be trapped within their own bodies by an unreliable motor system. Erratic movements should not mean a life of solitary confinement, baby talk and remedial education.

My mom got close to discovering my intelligence a few times when I was small, but the expert opinion was that she was imagining things out of wishful thinking.

Autism Abilities Over Disabilities

Do people underestimate you? Constantly. I have a disability that makes me move unusually. I sometimes move impulsively, or flap my hands, or have a blank expression on my face. People may suspect my inside is matching my outside. Then they speak to me in a simplified manner. Maybe it is hard for people to imagine that a guy who looks autistic is also intelligent, but so it is. Once you know me you know I am smart. I study calculus, electronics, Spanish and history. I paint and cook and write books. But yes, I get a lot of “high five dude,” and the like, until people know me.

How liberating is it to communicate? I prayed a lot as a child, but I lost hope at some point because it seemed no one would ever realize I was intact intellectually. My mom got close to discovering my intelligence a few times when I was small, but the expert opinion was that she was imagining things out of wishful thinking. 

But, at the age of seven my prayers to communicate began to come true and eventually I learned to control my body to type out my thoughts on letterboard, keyboard and tablet. That changed my entire life and enabled me to become a free and educated soul.

Two Worlds for One Boy

Despite having autism, you have written two books. How did you manage to accomplish such a feat? I have a lot to say and I felt a burning need to educate others about autism. Writing is self-expression and a creative outlet. My writing is informed by my years of being silent and listening. 

I write by pointing to letters or typing with one finger. It takes a while, but I live in silence, so my story is composed mentally first, and not outlined on paper. My brain maps out the entire book and I slowly type it out a paragraph at a time. In this way I wrote my novel. My memoir was a different process as it was written like a journal when I was a teenager.

We are all working toward the same goals of acceptance and understanding.

Insights from an Autistic Author 

What is your latest book, a novel, In Two Worlds, about? Seven-year-old Anthony has autism. He flaps his hands. He makes strange noises. He can’t speak or otherwise communicate his thoughts. Treatments, therapies, and theories about his condition define his daily existence. 

Yet Anthony isn’t improving much. Year after year his remedial lessons drone on. Anthony gets older and taller, but his speech remains elusive and his school lessons never advance. Life seems to be passing him by. Until one day, everything changes.

In Two Worlds is a compelling tale, rich with unforgettable characters who are navigating their way through the multitude of theories about autism that for decades have dictated the lives of thousands of children and their families. This debut work of fiction sheds light on the inner and outer lives of children with nonspeaking autism, and on their two worlds. 

As one of the only works of fiction written by a person with non-speaking autism, it offers readers an unprecedented insider’s point-of-view into autism and life in silence, and it does so with warmth, humor and a wickedly sharp intellect.

 

Living with Autism in Silence

How do you hope readers react to this reality-based story that offers insight into how one lives in a life of silence? My hope is that by going into the head of a nonspeaking autistic boy that readers will be moved and gain insight into the experience of what it is like to live bombarded by sensory stimulation but unable to communicate your thoughts, leading to endless misunderstandings.

The reader shares Anthony’s experience of living in a patronizing world that endlessly misunderstands him and underestimates him. His eventual liberation to communication follows a heroic struggle to be heard over the forces of benevolence that oppress him.

How rare is it to be a non-speaking autistic person who is a novelist? Other nonspeaking autistics have written memoirs, poems and blogs, been featured in documentaries and presented at conferences and done advocacy work. We are all working toward the same goals of acceptance and understanding. However, to my knowledge, my novel is unique. Writing it was a huge undertaking for me, but I wanted to express myself artistically and to reach a larger audience outside of the tightknit autistic world.

Technology as a Tool

What role has technology played in your life? I have an app that speaks my typed words on an iPad. It is helping everyone to see that I communicate my own thoughts and that I have my own voice, albeit a computerized one. When I began communicating, I used only a laminated letterboard, as low tech as could be. Advances in technology enable me to type in a Spanish app as well as an English one and thus “speak” in Spanish class.

How are you helping to liberate other non-verbal autistic people? Many parents and professionals say that reading my books helped them see their child or students in a new way and changed how they treated them. I am proud to say that my book inspired many families to explore typing to communicate and now have a communicating autistic family member. In addition, I am collaborating on a project with my mom to help autistic people gain communication. It is a work in progress but I hope to say more about it in a few months.

 It is high time experts in the field of autism heed the words of typing autistics and make the necessary changes in treatment. Our fates are controlled by people who don’t understand us.

Advice for Parents

What advice would you give to parents with autistic children? Trust your gut. Don’t ignore signs of intelligence. Talk to your child as if he were intelligent. Make life meaningful. Teach communication. Work on fitness. Don’t miss the person for the symptoms. Love your child.

You believe some of those who instruct autistic people are missing their mark and are failing us. Why? Smart, trapped kids who cannot show their intelligence are limited to 1+1, ABC and “touch your nose,” for endless, monotonous years. The emphasis is on making a person look less autistic, but no one notices that behind the erratic movements is an intact mind that is trapped by a disobedient motor system. There is tremendous bias institutionally, and lots of money to be made.

 It is high time experts in the field of autism heed the words of typing autistics and make the necessary changes in treatment. Our fates are controlled by people who don’t understand us.

Autism Activisit in Action

What did you present at a United Nations Autism Day event? I was unable to attend in person and as a result they invited me to present a film about myself and my work advocating for autistic people. It is viewable on YouTube. My message was that not talking is not the same as not thinking. I described the motor traps and the need for autistic people to be educated and accepted. I stated that communication is a basic human right. I continue this advocacy as a member of the Board of Directors of Communication First, a civil rights organization for people who are unable to speak verbally.

If a triumph over obstacles for those with autism only comes with new appreciation to treatment, which areas do you hope get researched, funded, and supported? I believe research into the biomedical origins of autism are important and there is a great need to accurately define autism. My disability is primarily motor and is not a language processing or social processing one. I do have theory of mind. I do have empathy. I do get jokes. I do understand puns. My issues are different, and I deserve an accurate diagnosis. The research of my friend, Yoram Bonneh, in eye tracking is incredibly important. There needs to be changes in treatment and early intervention. Let autistics lead their own liberation. Communication is key.

Dream for Autistic Children

What’s next for you?

I hope to see In Two Worlds on every bookshelf, as a movie, and as a work that changes lives for the better. I am currently working on Book Three and hope to continue writing. My dream is that no autistic child suffers the way I did, and many others have and still do. Life in silence is hard and isolating. If the silence is compounded by being mistaken for a nonthinker and no education ensues, then the trap is a horrible one. 

In fact, I have seen tragic situations and I must fight for those who have not yet been liberated by communication. I will never stop advocating and if my masterpiece, In Two Worlds, helps spread the word to the general public and people begin to look at autism in a new way, I will be thrilled.

If you have a child with autism, there are many classes offered online that can assist in socialization as well as explore their interests in safe spaces.

Ido Kedar overcame obstacles of autism to be an author.

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