Plot: The plot is well crafted, showcasing Anthony's growth and fight to assert himself as an intelligent and capable human being. The author details both the internal and external struggles of Anthony and his family and the treatment of children and young adults who exhibit signs of being on the Autism spectrum.
Prose: Kedar's writing style is fairly simple and minimalistic. Still, the writing ably conveys the emotional inner life and turmoil of the book's lively main character.
Originality: Kedar's novel is fascinating, and a much-needed addition to the genre that adds diversity and explores different abilities.
Character Development: The characters in Kedar's novel are compelling and haunting, providing the reader with an in-depth personal view into the mind of a person diagnosed with severe nonverbal autism.
Date Submitted: August 31, 2018
I have nonspeaking autism, which means my ability to communicate verbally is limited to a few words and well-practiced short phrases. Thanks to apraxia, even that is mostly unintelligible, except to those who know me well. While no one demanded that Stephen Hawking rely only on his speech to prove his smarts, it’s different with nonspeaking autism. Because we are born trapped, we never had the chance to prove ourselves before losing the ability to speak.
When I was a toddler, my parents were told I had a receptive language processing disorder and possibly a cognitive disorder, too. I was drilled endlessly at the most remedial level. This might have been OK if I actually had a language processing disorder and didn’t understand basic concepts, but my disability is something else entirely. I have always understood speech. I have insight and I’m intelligent. I just couldn’t demonstrate this in my drills because my body didn’t enable me to speak or move the way I wished. So I spent a lonely childhood listening to specialists who misunderstood everything about me, unable to defend myself by communicating.
My intact thoughts don’t transmit reliably to my motor system. I want to speak, but I cannot. This has robbed me of autonomy, imprisoning me within my own uncooperative body. To compound the problem, my autism comes with strong involuntary compulsions like waving my arms in excitement. My odd-looking movements only worsened the specialists’ perceptions of me. The experts, who held such power over my young life, were always confident in their theories. Until I was 7, I had no means to disprove them or convey my thoughts at all.
Photo: iStock/Getty Images
What liberated me was the Rapid Prompting Method, or RPM. Through it I learned how to move my arm to touch letters to communicate, first on a letter board, then on a keyboard, then on a tablet with a voice-output app. The process of learning how to control my unreliable hand for the purpose of expressing myself was gradual and painstaking, but it was worth it.
Yet the professional organization of speech-language pathologists has denounced RPM. The American Speech-Language-Hearing Association, or ASHA, claims RPM has not yet been validated by testing, asserting “there is no evidence that messages produced using RPM reflect the communication of the person with the disability,” rather than that of their helper. Yet my partner merely helps me to maintain my focus. I move my own arm, untouched. The thoughts I express are my own. Many typers, myself included, have progressed steadily in skills, fluency and independence over time. It’s documented in films and evident by observation. We are not exceptions but indications of what could be possible for many more suffering children.
Slowly touching letters with one finger has transformed my life. With this skill, I escaped remedial education, became a general-education student, and graduated high school with honors. I now take college classes. On my iPad, I’ve delivered speeches at universities and conferences. I’ve written two books about autism. My first, “Ido in Autismland,” a memoir I wrote as a teenager, has been used in university classes. I released my second book, a novel called “In Two Worlds,” in July, shortly before ASHA released its position paper discrediting RPM.
“In Two Worlds” takes the reader into the head and heart of Anthony, a nonspeaking boy underestimated by everyone. Though his parents comply with all the recommended therapies, Anthony improves little and loses hope. At the late age of 16, he learns to communicate by touching letters, but his family endures skepticism and opposition from the professional community. The book shows how confirmation bias is a huge problem in autism treatment. ASHA’s recent announcement has further validated this point.
Speech therapy, which I received to no effect for more than 10 years, is ASHA’s endorsed path to communication. But if my family had relied only on that, no one would know I was even in here, intact under the quicksand of autism. Through letters I became a free soul, not one limited to a few unclear spoken words. It would now serve ASHA well to listen to the voice that RPM gave me.
Mr. Kedar publishes a blog at IdoInAutismland.com.
Out in the Open · March 2
Ido Kedar is a 21-year-old man with autism, who cannot speak (also known as nonverbal autism). He was told from a very young age that he would never be able to communicate independently.
But when he was 7 years old his mother, Tracy Kedar, says Ido communicated with her for the first time in a way she knew for sure that he understood her.
They were making invitations for Ido's birthday party. He did not have the motor skills to hold a pencil on his own, and she was resting her hand over his. As they wrote, it seemed to her that he had a flash of recognition.
"I was kind of talking out loud and I said 'Oh shoot, I forgot this word' and under my hand I feel his hand spelling it out. And I hadn't said any of the letters," Tracy says.
The system was gamed against me. If I showed intelligence, my mucked up motor system took over.- Ido Kedar
People assumed that Ido didn't know how to read or spell, but by prompting different words, it was clear that he knew more than they had thought.
"I put away the invitations and … I remember asking him 'Why didn't you show me before?' and under my hand I feel him writing 'I didn't know how to,'" Tracy says.
- How a teen with autism found a friend in Siri
She was delighted, but that feeling was accompanied by the realization that he didn't just have the capacity to communicate and understand in that moment. He had for years prior.
"(I was) overjoyed and very guilty," she says. "There was a lot of regret for not having discovered it sooner."
Catching up on lost time
Ido talked to us using his iPad, typing out words one letter at a time. It takes him about three seconds to type each letter. Due to the amount of time involved, we sent him questions in advance.
Ido says that he was just as shocked when his mother discovered that he could communicate.
"I had no hope that my intelligence would be discovered. The system was gamed against me. If I showed intelligence, my mucked up motor system took over," he says.
Learning that he could communicate prompted complicated emotions from both mother and son. (Courtesy Tracy Kedar and Ido Kedar)
Experts often treated his attempts to show intelligence as an accident, he says, which made it harder for him to believe that he could prove it. So once his mother did understand, Ido shared her joy, but had another, more complicated reaction.
"Honestly I was mad too. I had a lot of resentment inside because of my frustrating experiences being a smart kid trapped in a dumb body," he says.
Tracy says that some people remain skeptical about his ability to act independently. Even professionals who worked closely with Ido didn't believe it. However, she says she can live with the need to convince some people that he's intelligent because their reality prior to her discovery was worse.
"I could deal with them thinking I was a delusional mom in denial. That was far less difficult than believing my son was not ever going to progress," she says.
Learning to type
As for Ido, being able to communicate opened a whole new world to him.
"My mom and dad found me a teacher who taught me to type independently. Then it became really hard for the experts to refute. But it took time to get to this level of proficiency," he describes.
Once Tracy Kedar new her son was able to communicate, the next challenge became proving it to others. (Courtesy Tracy Kedar and Ido Kedar)
He learned at first using a cardboard alphabet chart, moving on to a keyboard and then eventually an iPad.
"Communicating has enabled me to break free, to not be as trapped by my disability, to help others and to correct scientific understanding of non-speaking autism." he says. "Communication is a basic human right."
Both mother and son now work to help people who are nonverbal make the same progress that Ido had.
In 2012, he released a book about his experiences called Ido in Autismland: Climbing Out of Autism's Silent Prison. He has a second book, this one fiction, coming out soon.
This story appears in the Out in the Open episode "Divides".