My Mother and I Were Interviewed on Canadian Radio

Out in the Open

with Piya Chattopadhyay

Sunday March 04, 2018

‘Communication is a basic human right’: How this man with nonverbal autism found his voice

Ido Kedar uses his iPad to communicate.

Ido Kedar uses his iPad to communicate. (Courtesy Ido Kedar and Tracy Kedar)

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.

Ido Kedar on the hill

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.

Ido Kedar mountain

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”.

5 responses to “My Mother and I Were Interviewed on Canadian Radio

  1. What marvelous photos, Ido.

    Thank you for smiling!

  2. I live in Keswick, Ontario Canada and just happened to hear the radio interview while driving home from work. It was great to hear Ido and his mother reaching out with their advocacy to Canadian audiences. It’s even better to read the blog and see Ido’s smiling face!

  3. Ido I am a primary carer to a guy like you, who also has learnt to type. I would love it if you guys communicated online, and became friends. His name’s Rayan, he’s eighteen and we live in Melbourne Australia. Rayan was taught to type via FCT, I now can stand opposite him while he types, so there is no physical contact. I know you are busy raising critically important publicity, and being an amazing role model, but if you want to say hi to Rayan you can email him at sharene@live.com.au Thanks for all your hard work! Sharene

  4. Wonderful article and Ido you will always be our hero! Your book “Ido in Autismland” what that introduced us to RPM and that started us on our journey to communication with our son Josh who is now 16. I will always be grateful for finding out about this. I do wonder why articles like this mention iPads and tutors generally but do not mention RPM (Rapid Prompting Method) or Soma by name. It makes it seem like the technology magically enables non-speakers to suddenly start communicating and I think does a disservice to new parents who might try introducing a keyboard to their non-speaking children and not be aware of the necessary teaching system to help their children be successful. I have had parents tell me they tried a letter board with their child but they “didn’t get it” which is horribly unfair to the child.

  5. As a CBC Radio geek, I am looking forward to hearing your interview!

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