Q&A with Ido Kedar

Ido Kedar is the author of the novel In Two Worlds. He also has written the memoir Ido in Autismland, which describes his experiences with nonspeaking autism. 

Q: Why did you decide to write this novel, and how did you come up with the idea for your character Anthony?

A: I have a nonfiction book, Ido in Autismland, that I wrote when I was a teenager. It has had a significant impact on the lives of autistic nonspeakers and their families. I have continued to write nonfiction in my blog, idoinautismland.com, basically continuing where my memoir left off.

I have made inroads reaching out to families and professionals in the autism community through my nonfiction writing, but I realized the general public knew very little about autism.

In addition I craved a challenge and a new creative experience. Writing a fictional story about an autistic boy gave me the opportunity to do so much more than nonfiction allows.

Instead of me describing and explaining what autism is like, fiction lets the readers experience autism for themselves. They go into Anthony’s (the protagonist) head to swirl with his senses, hear his thoughts, and face his outer challenges.

Fiction let me create a true-to-life family and show how autism impacts them, for good and bad. It also gave me the chance to lay out current controversies through a variety of characters that have a huge impact on Anthony’s life.

In essence, fiction takes the reader on a journey into Autismland and exposes the reader to a new world that I hope will prompt social change and greater understanding and tolerance of nonspeakers.

Anthony is based on many of my own experiences and many observed incidents. In my case, as a boy who couldn’t communicate until I was 7, observation was incredibly important in my life. I noticed everything. Then, because I could not speak or share my ideas using other methods, I thought constantly about what I saw.

My own life is different than Anthony’s in key aspects. I have a different and more perceptive family. I learned to communicate at 7, not 16, as he did, but I observed many of my autistic peers waiting to learn to communicate until they were 16 or older. Some are waiting indefinitely.

To me, Anthony represents a kind of autistic everyman and his journey moves the reader from hopelessness to hope. 

Q: How was the book's title chosen, and what does it signify for you?

A: The title, In Two Worlds, reflects the multiple dualities of Anthony’s life. He is torn between his inside and outside.

In other words, his inner autism and his outer therapies, his smart brain and his outer presentation of ineptitude and confusion, his at times hallucinatory sensory system and his outer life of mundane drills and behavior modification, his rich, intelligent, inner world and how he is erroneously perceived as low-functioning cognitively by experts, his life in silence without a means to communicate for 16 years with his entire destiny controlled by others and his ultimate liberation to communication and some measure of autonomy.

Anthony’s two worlds reflect a boy living in a trapped body while his mind and soul can soar freely.

Q: Can you say more about how the experiences of writing fiction and nonfiction compare for you?

A: Writing fiction is a lot more fun, to be honest. I have been writing nonfiction since I was 12, educating and advocating, and getting asked the same questions over and over. There are many misconceptions about autism that have truly harmed people and I have felt a need to help fix things, to the best of my ability.

My memoir, Ido in Autismland, was written between the ages of 12 and 15. I felt passionate about writing it and poured my soul into it. Nine years later I still get asked the same questions, and I assume I will forever.

That’s fine, by the way, but I needed to stretch myself in a new way. Inventing characters, villains and heroes, and the world of a family was incredibly enjoyable. I knew their world. I heard their conversations in my mind. The characters were vivid to me and became real to me and they became real to readers too.

It is worth mentioning that one widely believed theory about my disability is that we lack creativity, imagination, insight, and empathy. I hope my book turns that nonsense on its head. 

Q: What do you hope readers take away from In Two Worlds?

A: My hope is that by going into the head and heart of Anthony that readers will be moved and gain insight into the experience of what it is like to live bombarded by sensory stimulation but to be unable to communicate your thoughts and show people who you really are due to an unreliable motor system.

The reader is the only one, besides Anthony, who knows he is smart and understands everything he hears. Consequently they share his experiences and frustrations of living in a world that endlessly patronizes, underestimates, and misinterprets him. The reader experiences Anthony’s highly sensory, at times almost psychedelic, inner world with him.

His eventual liberation to communication follows what I would call a truly heroic struggle to be heard despite powerful forces that on the surface seem benevolent, but which actually keep him stuck in isolation. The reader is with Anthony as he finally breaks free from them.

In Two Worlds examines the toll nonspeaking autism takes on family life and it looks at the popular autism treatments and theories that dominate his every moment. Ultimately, In Two Worlds tells the story of autism from the inside out.

Q: What are you working on now?

A: I am working on another book as well as collaborating with my mother to develop an online class to help other autistic people gain the skills needed to communicate and end their isolation. Many people have no access to a qualified instructor so online is the ideal venue for them. My goal is to keep educating and advocating, but to keep my challenges varied and fresh.

Q: Anything else we should know?

A: It is important to understand that many people believe nonspeaking autism is a language processing and cognitive disability, when for me, and for  thousands of others, it is actually primarily a motor disability. 

Severe autism itself is a huge challenge and very frustrating. It prevents people from moving and behaving as they like and means they must always have some kind of supervision in life.

But the misunderstanding of the disability just makes the situation exponentially worse. After all, if you had a disability that trapped you in dumb-looking motor patterns, you might be annoyed at the trap, but then trapped further by the professional response that believed that the motor patterns reflected lack of intelligence or thought. Try to imagine being paralyzed. You tell your body to move and it refuses.

Your brain is ok. It’s the disconnect that causes the problem.

Now imagine that your body is moving but doesn’t obey your brain. That creates impulses, patterns, and erratic movements. That’s autism. Kind of a moving paralysis, not a lack of thinking or understanding. Simply put, not talking is not the same as not thinking.

In Two Worlds has been well reviewed by readers and is recommended by Kirkus Reviews and BookLife , where it was a quarterfinalist in fiction. You can find my books on Amazon, Kindle, Smashwords (eBook), and Ido in Autismland is also available on Nook. You can reach me through my blog, www.idoinautismland.com, or Facebook. 

--Interview with Deborah Kalb