with Piya Chattopadhyay
Sunday March 04, 2018
‘Communication is a basic human right’: How this man with nonverbal autism found his voice
Note: The following article is from the CBC webpage.
Here is the broadcast: Listen 12:21
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.
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.
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.
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”.