Counting down the top 10 most-viewed posts of the year...here's #4, a Q&A with Ido Kedar about his novel In Two Worlds, first posted on 7/16/20.
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
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