Page 1 of 1 [ 13 posts ] 

ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,623
Location: Long Island, New York

05 Mar 2018, 1:18 am

'Communication is a basic human right': How this man with nonverbal autism found his voi

Quote:
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.

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.

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.

"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.

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.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 62
Gender: Male
Posts: 929

06 Mar 2018, 8:49 pm

ASPartOfMe wrote:
'Communication is a basic human right': How this man with nonverbal autism found his voi
Quote:
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.

Does anybody have more information on Ido Kedar? I also learned about him just recently. I believe I have done enough due diligence (via googling) for me to be skeptical. It's facilitated communication.

Couple of my concerns:
- It is claimed Ido attended a "regular" school. I don't know what a "regular" school is.
- Other famous cases (e.g. Jacob Barnett, Carly Fleischmann, etc.) always have had close third parties that could corroborate their stories. In the case of Ido Kedar, I haven't found any corroboration from his teachers or classmates.
- I have found no mentioning about Ido's abilities in mathematics. (In contrast, I was able to find Carly Fleischmann's language-based math skills ranked at 95th percentile at age 18).
- Ido Kedar has barely been mentioned on WrongPlanet in the past.


_________________
Jason Lu
http://www.eikonabridge.com/


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,623
Location: Long Island, New York

07 Mar 2018, 4:57 am

Just because they are not mentioned on wrong planet does not mean they do not exist. Not every autistic posts on or even heard of wrong planet.

I am not Canadian but a regular school here in the states means a non special needs school.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 62
Gender: Male
Posts: 929

07 Mar 2018, 11:33 pm

ASPartOfMe wrote:
I am not Canadian but a regular school here in the states means a non special needs school.

Why bring up Canada?

I found out more about Ido Kedar. He seems to have gone to Canoga Park High School, which seems to belong to LAUSD (Los Angeles Unified School District).

http://idoinautismland.blogspot.com/
Sunday, February 16, 2014
... I am now 17 and I am a fulltime high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As.


https://www.nbclosangeles.com/news/local/Autistic-Teen-Writes-Book-on-an-iPad--204775591.html
... Adrienne Johnston, an LAUSD Inclusion Facilitator, has worked closely with Ido.
“He doesn’t look like he’s paying attention necessarily but everything that’s being said he’s hearing, he’s processing and he’s able to understand,” Johnston said.
Ido is mainstreamed into a regular high school, where he is on the honor roll. He is hoping that he can help other kids like him to break barriers.


What bothers me is, if I do is indeed "mainstreamed," then, he would have had plenty of teachers and classmates. Why the interview was limited to an "Inclusion Facilitator"?!?! Why not interview Ido's teachers and classmates? See, in the case of Nikolas Cruz, they immediately interviewed teachers and fellow students.

Another thing that bothers me is a comment like: "...people with autism have intact minds, but are trapped in a body that does not obey to perform the motor tasks." This type of description fits the pattern of Amanda Baggs, and WrongPlanet has had plenty of discussion on that in the past. Simple googling shows plenty of controversies in that case.

Ido's book was published in Oct. 2012. That's about 5.5 years ago. I mean, if everything were as successful as publicly claimed, why are there no follow-ups? Why have I not been able to find interviews to teachers and fellow students? Why is Ido's story not a smashing success out there? Why is he not well-known on WrongPlanet?

This is compounded with skeptical opinions out there. See e.g.:
http://skepdic.com/comments/facilcomcom.html

Sorry for being skeptical. From everything I have been able to track, things don't add up.


_________________
Jason Lu
http://www.eikonabridge.com/


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,623
Location: Long Island, New York

08 Mar 2018, 7:53 am

eikonabridge wrote:
ASPartOfMe wrote:
I am not Canadian but a regular school here in the states means a non special needs school.

Why bring up Canada?

Do not ever be sorry for being skeptical.
And I do apologize for assuming Ido is Canadian because the article is from the Canadian Broadcasting Company.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 39
Gender: Female
Posts: 16,283
Location: Poland

08 Mar 2018, 10:01 am

eikonabridge wrote:
It's facilitated communication.

No. Facilitated communication involves other person who "helps" typing.
When Ido types on his own like here:
https://www.youtube.com/watch?v=oNlLez0bGbc&t=1m
it is AAC.

People often confuse those two but the difference is fundamental. When a person uses AAC on their own, their authorship of the message is clear, while with FC scientifically strict tests have proven the facilitator to be the actual author of the messages. So what Ido uses is not FC but AAC and the difference is fundamental.

BTW, I have heard about Ido before, he didn't just appear out of nowhere today.


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 62
Gender: Male
Posts: 929

08 Mar 2018, 10:54 am

magz wrote:
People often confuse those two but the difference is fundamental. When a person uses AAC on their own, their authorship of the message is clear, while with FC scientifically strict tests have proven the facilitator to be the actual author of the messages. So what Ido uses is not FC but AAC and the difference is fundamental.

I have worked in Hollywood area before. I know how video editing can give illusions. That's how Hollywood makes money, after all.

Have you watched enough videos of Ido Kedar? Frankly, they make me extremely uncomfortable. Here is an example:



Question: "Do you think that other people, other non-verbal autistic kids and people, can learn to type like you did?"
Answer: "It is internal traps not cognitive delay"


Tell me, do you feel this is a proper response? Or was that just a "correlation talk"? Don't you think there is something else going on? Do you think with this kind of response, Ido Kedar has written everything on his blog and his book?

Facilitated Communication is when the entire communication is facilitated, and that includes moments not shown on video clips. What you are seeing are the end products.


_________________
Jason Lu
http://www.eikonabridge.com/


Mudboy
Veteran
Veteran

User avatar

Joined: 19 May 2007
Age: 62
Gender: Male
Posts: 1,441
Location: Hiding in plain sight

08 Mar 2018, 12:06 pm

eikonabridge wrote:
Does anybody have more information on Ido Kedar?
Posted on January 21, 2018
My New Book Update


_________________
When I lose an obsession, I feel lost until I find another.
Aspie score: 155 of 200
NT score: 49 of 200


magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 39
Gender: Female
Posts: 16,283
Location: Poland

08 Mar 2018, 1:50 pm

eikonabridge wrote:
Question: "Do you think that other people, other non-verbal autistic kids and people, can learn to type like you did?"
Answer: "It is internal traps not cognitive delay"


Tell me, do you feel this is a proper response?

Feel? Proper? What do you even mean by these words? How a response could be proper and how can I feel it?
Aren't you just coming from extremely NT angle right now?


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 62
Gender: Male
Posts: 929

09 Mar 2018, 5:27 am

magz wrote:
eikonabridge wrote:
Question: "Do you think that other people, other non-verbal autistic kids and people, can learn to type like you did?"
Answer: "It is internal traps not cognitive delay"


Tell me, do you feel this is a proper response?

Feel? Proper? What do you even mean by these words? How a response could be proper and how can I feel it?
Aren't you just coming from extremely NT angle right now?

Instead of watching aspie fictions like "The Good Doctor," here is a talk from a real-life aspie doctor: the current mayor of Taipei. He used to be the number one trauma surgeon in Taiwan, and is known for his expertise in ECMO https://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation. The talk has English subtitle. It's rather long, but for people with some physics and math background, this is a great talk. You may learn something about life and death, and how to live your life. He recently visited Warsaw (Poland), by the way.



... That's a sad fact about humans: humans have feelings, so we often can't make rational judgment. Even when rational thinking tells us one thing, we would still choose to delay facing it. Frankly, myself still have this defect. You know it, but you still want to take your chances. That's why love cheats succeed at scoring. Like myself, I have a fairly high IQ, and my probability estimates are also fairly accurate, from my experience, I can roughly estimate the probability of an event. However, when the probability of ocurrence is low, I often get myself into the same trap, choosing to believe that, he was just unlucky. We often go in denial. The reality is something else. My dear child, the probability of you being an exception is very low. Therefore, next time you encounter something unusual, I am afraid you still need to accept reality: that it has issues. Don't try to use outliers of the normal distribution to deceive yourself. That's why we talk about null hypothesis. What I mean is, when a normal distribution shows up at its outlier region, try to avoid saying that it is still the same mechanism but only that it falls on the fringes... because the true mechanism may be something else altogether. When the probability is low, you need to tread carefully, because it's a whole different mechanism. Knowing all this, I often still make the same mistake. That's a sad fact about humans: because humans have feelings, Humans have expectations. Even though I myself often make this mistake, I would still encourage myself and all of you, that we all should have the courage, based on mathematical logic, to tell ourselves: "it's probably not the case." You often choose to believe, because you have expectations. ...

(In case you wonder how come I have the English text of the talk, I'll tell you: of course I have it... I was the translator.)

Nahh.... I have done more than enough due diligence regarding Ido Kedar.


_________________
Jason Lu
http://www.eikonabridge.com/


magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 39
Gender: Female
Posts: 16,283
Location: Poland

09 Mar 2018, 5:49 am

You flood your readers with tons of irrelevant news instead of answering questions directly.

Also you imply strange things like me getting information about autism from some TV series I've never watched. Have you ever considered why am I on this site for the very beginning?
Do you mean that Aspies have feelings too? Yes we do. And, as the doctor you quote pointed out, they are painfully often misleading, in both Aspies and NTs.

Ido's answers may seem odd in "typical conversation" scheme but they do make sense. Remember he types slowly so he saves words that don't carry information. What he needs to inform anyone who listens is that level 3 autism communication issues are not because of lack of ability to think. There are "internal obstacles" in the communication itself.
That's the very core of autism.


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>


bumbleme
Blue Jay
Blue Jay

Joined: 23 May 2017
Gender: Female
Posts: 99
Location: Australia

09 Mar 2018, 10:29 am

I was also wondering why he hasn't been embraced more widely by autistics.
Then I had a look at his book. There is an endorsement on the back cover from a person from "Cure Autism Now".
In the book he also writes about hoping for a cure and calls autism a "disease".



magz
Forum Moderator
Forum Moderator

User avatar

Joined: 1 Jun 2017
Age: 39
Gender: Female
Posts: 16,283
Location: Poland

12 Mar 2018, 4:17 am

In some of his texts I found speculations if what he has is really autism.
He claims he can read people the way NTs do.
One of his guesses of what his condition should be called was "severe dyspraxia".

I wouldn't mind finding a cure for severe dyspraxia.

I'm just trying to research and understand his case. All the steps.
Are his messages really his? He started with the infamous FC but then via RPM he trained until he was able to type independently. But I can't find any video without his mother sitting next to him and constantly talking.

Did some researchers take him and tested independence of his messages the way they disproved FC? That would end doubts.

If he identifies autism with his dyspraxia, no wonder he would like a cure. But if his messages come from his mother, it would explain it just as well.


_________________
Let's not confuse being normal with being mentally healthy.

<not moderating PPR stuff concerning East Europe>