Category Archives: intelligence

From 2012, my Speech, “Imagine Having Autism”

Here is an eleven year old post that I wrote when I was fourteen years old.

From My Speech, "Imagine Having Autism"

*A happy  footnote is that I now know of three of my former classmates from elementary school who are now fluently typing to communicate. I hope there are even more.

Brain Alive in a Vegetative State?

How much do we assume because of appearances?
A stroke patient may not be speaking. Is the mind empty?
An autistic person may not be speaking and does odd things. Is the mind empty?
A person with locked-in syndrome can’t move. Is the mind empty?

Who gets to decide if a person who is locked internally is thinking or not? Is it the geniuses at ASHA or the Lovaas Institute or in the university or clinics? How can a trapped mind communicate intelligence if the presumption is that the intelligence is compromised?

And what about the “brain dead” in vegetative states? Now new evidence indicates that 1 in 10 have consciousness. It’s my opinion that the brain is vast and its thoughts unknowable by mere external observation.
Not talking is not the same as not thinking.

Assume Competence

The current debate in autism education is between those who assume competence, have expectations of intelligence, and as a result, frequently discover minds that think behind the autistic mask. The other school of thought is reflected in this statement by ASHA. That is, to assume competence is abusive somehow. I know what presuming incompetence does. It deadens hope and kills expectation. It makes seeing the ability impossible.

No one is claiming everyone is brilliant, just that fewer nonspeakers than the experts believe, are dumb. I prefer to believe that nonspeakers may have intellectual skills not immediately evident for a variety of reasons. See here for some reasons.

Look for intelligence and you discover more. Look for disability and you get stuck in limitations.

Please enjoy this Ted Talk on finding competence by Vaish Sarathy.

Scientists Try to Find Ways to Demonstrate that Nonspeakers with Autism Understand

This podcast is attempting to explain alternative means of testing the intelligence of nonspeaking autistic people. (It is the companion piece to the article I shared from The Atlantic Magazine in my last post). These tests rely on evidence in the brain to show understanding when a person cannot communicate. I’m all for showing intelligence because it’s important to show.
I think teaching communication is helpful too. I mean, I really can show my intelligence if I communicate.
That is going to be my goal each and every time I hear or read something like this, because intelligence remains trapped if a person cannot type their thoughts or express their ideas somehow.

Incidentally, my mom and I were interviewed for this podcast.

Exploring Why Standard IQ Tests Fail People with Nonspeaking Autism

This article, from The Atlantic and also Spectrum Magazine, attempts to demonstrate that nonspeaking people with autism may have more intellectual capacity than standardized testing reveals. Thanks to researchers like Yoram Bonneh, (mentioned in the article) maybe more scientists will see that intellectual capacity.
My mother and I were interviewed for this story, in addition to a podcast that hasn’t been broadcast yet.
The fundamental concept is that not talking does not mean not understanding, despite a bizarre obsession by experts to conflate the two. The challenge for experts is imagination. But let me help.

I’m administering an IQ test to you, but your hands are in baseball mitts, your mouth is taped shut and the room distracts with a laser light show.

Good luck, and if you don’t do well I’ll assume your IQ is 52.

Paving the Path by guest blogger, Dillan Barmache

Dillan and Ido

Dillan and Ido

Ido has been a figure of importance for those of us on a journey to find our voices. I have known him a long time, and he has given me advice, hope and footsteps to follow in my time as a communicator. I don’t know if I would have had the same success now that I have achieved in my struggle against silence without him to forge a path before us. I would like to think I could have, and I wonder how much it must have been so frightening to make those paths without his own guide ahead. Ido gave me a lot when he had so many of his own trials to face. We all have to fight so hard to beat autism, a school system that doesn’t know what to do with us, and expert behaviorists who denounce our accomplishments as a hoax. Ido still found it in himself to take the time to help me in this struggle, and he even wrote to me in his book. I hope a younger version of me can look at my story and I can do for him what Ido has done for me.

The process of bringing true education to people with autism is as complex as the condition itself. In my school, Ido was first down that road, and I was able to look at his experience and know the challenges ahead and what mistakes to avoid. And further down the road, the next student will be able to refine the process. We keep building and learning how to learn. There will never be a perfect way, and that is good. Always adapting is the perfect way, and Ido began that all in my school. It is most important to be open to knowing that there are undiscovered modes of learning. Already many teachers are fixed in their ways and unwilling to admit to a need for change. Our presence in the classroom will show them an example they cannot ignore. I am grateful to Ido for being the first of hopefully many.

My Speech at the Mental Health Advocacy Services Celebration

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.

How Do You Talk to a Nonverbal Person with Autism?


 Guest Post
By Tracy Kedar (my mom)
“High five, Ido,” the earnest young woman said, greeting my son for the first time as they were about to work together. “Uh-oh,” I thought, “bad start.” “Good job. High five,” she said to him over and over.
Ido has nonverbal autism and can’t speak. At that moment, due to the nature of the activity, he did not have immediate access to his letterboard or iPad, so he had no means to tell the nice, well-meaning young woman that he hates being told, “high five,” and “good job,” and that he hates being spoken to as if he were three (he is seventeen), and to please talk normally to him.
I thought, “Okay, say something now before this becomes a pattern and he becomes insulted.” As tactfully as I could, I mentioned to her that Ido doesn’t like “high five.” He wants to be spoken to normally. “But this is how I talk to everyone,” she replied.
Really? She goes to a party, walks up to her friend, or the attractive young man she wants to meet, lifts her palm and says, “high five” in that particular tone of voice?  She palm-slaps friends she passes at work, the cashier in the market, her doctor? I didn’t think so. Perhaps if she hung out exclusively with two year olds she talked to everyone like this. Otherwise, let’s assume she gives people with autism or other special needs, special communication. 
My son, Ido Kedar, is a high school junior, and despite his severe nonverbal autism, he is the author of a book, Ido in Autismland; Climbing Out of Autism’s Silent Prison, is a blogger, is an honors fulltime general education high school student, and is a frequent guest lecturer at universities and autism conferences. His vocabulary is huge, his intellect, fully intact.
Knowing this, or even a small bit of this, I had to wonder, why would anyone talk to Ido in this infantile manner? Why talk to anybodylike this? The answer is that many people with special education training have been programmed to believe that autistic people need speech broken down to simple components to help deal with the assumed receptive language or cognitive delay. Talking in this way is deeply habituated for many people who assume it is the right thing to do for every person with special needs. Otherwise, why say, “high five, good job,” instead of, “excellent effort. That was outstanding.” Hear the difference? Autistic people do too.
Recently, Ido had an unexpected encounter with a professional who spoke to him like this; “He knows I know he’s smart, right, bud? We’ve got a thing, right, bud?” Enduring a situation he found pointless and patronizing and which pulled him away from an academic class which mattered to him, Ido stewed and finally replied as an irate teenager would and typed, “F—  this.”
The question is, would this professional talk to any other high school student like this, let alone a high achieving honors student? We all know the answer is no. Professionals too often talk aboutthe person (“He knows…”) and not tothe person (“You know…”).  They talk in childish tones and reduced vocabulary. The message is, “I say I know you’re smart but I treat you like I think you’re not.” To which Ido says, “Enough!”
In his book, Ido inAutismland, Ido wrote in his essay, How I Would Have Liked to Have Been Taught,
If I could educate the specialists, the first thing I’d recommend is to talk normally to autistic kids. No more, “Go car,” “Close door,” “Hands quiet,” or the like. It’s stupid to talk this way. Some teachers used tones to make words more distinct or over-enunciated sounds, like “letter” made with a “t” sound, not a “d” sound like we use in America. They sounded so silly I often rolled my eyes inside. (p 55)
When Ido was little, before he could type and we didn’t know what was locked inside, we used to speak to him in this simplified way, as we had been instructed to by autism professionals. We went through a terrible episode when he was small when he grunted continuously every few seconds all day long. He couldn’t stop and we tried all the traditional behavioral techniques of extinction, or telling him, “no,” or “mouth quiet,” to no avail. Finally, in desperation, I told him in totally normal language before a car drive that his grunting was distracting to me while I drove and I told him that he needed to make every effort to not do it for the duration of the drive. To my amazement, he did. From that point on, even before he had communication output, I gave him the benefit of the doubt and the respect of normal communication input.
Regularly, Ido gets letters from parents telling him that they now speak normally to their child with autism, thanks to his advice, and that their child is responding positively. Ido has asked professionals to ponder, if you had duct tape over your mouth and around your hands, would that mean you couldn’t understand speech? How would you like people to talk to you if you were in that situation? How do you talk to a nonverbal autistic person?

Lizard Brain

Autism is a very frustrating disorder. I can be totally impulsive. I get foods I shouldn’t take. I see it. I take it. No thought at all. I see things I want to spill or spray or touch. No thought at all. It is my lizard brain. It is almost reflexive. I think eventually, when I am caught. Then my reasoning is totally stung with remorse. I hate my impulsive actions.

I live in a dual world. On the one hand I have an intelligent mind and I think deeply. On the other hand, I only react to impulses, like a lizard chasing a cricket. Maybe neurologists or neuro-scientists can figure this one out. My whole life is extremes. I am intelligent but I am not able to speak or write like a teen. I can’t even speak as well as a kindergartner. I am impulsive like a baby, but I am a religious thinker like an adult.

Autism is a wild ride. I think it is sort of a blessing to think deeply like I do, but it is so grating to follow my lizard brain as well. I wish I could figure out how to get mastery over it because people rightly get angry and I seem selfish.

My Speech at the Vista del Mar Autism Conference

I am honored to speak here today. I know some of you are professionals working in autism, and some of you are parents, and even a few of us here actually have autism. So I will represent the point-of-view of someone who has unfortunately lived with autism since the first moment of life.

It aint easy.

It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.

The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.

Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.

So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.

It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.

I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.

Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.

When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.

If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.

Thank you for your time today.