Category Archives: autism

The Ocean

Posted on November 19, 2012 | Leave a comment

I love the ocean. I feel so happy there. The weather could be hot or chilly but I feel happy to see the sand and waves. I love the feel of the cold water too. I go too far in it sometimes. The ocean is soothing and the sound of the waves is like a metronome that isn’t steady, but never stops.

I remember loving the ocean since I was a baby. I’d run to the water as fast as I could. My family would have to hold me back or I’d go in even in my clothes. It is like a magnet, in a way. When I go to the tidepools I resist the urge to go into the waves because the ocean because the ocean there begins  past the rocks and the tidepools filled with anemones and starfish. Only kayaks and surfboards venture there.

Many people with autism love the beach. Our senses have a field day there.

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Posted in autism, ocean, senses

From My Speech at the Vista del Mar Autism Conference

Posted on November 1, 2012 | Leave a comment

My name is Ido.  I have autism and I can’t talk. But I can think. I have ideas and feelings and even a theory of mind. Why I have to say this is obvious. Many theories I have encountered teach that I have no ideas, feelings, or theory of mind. Until I could communicate I couldn’t correct people, but now I can. 
When I was 12 I decided to write about my symptoms, my education, and my life. I wrote for 4 years until I wrote a book about autism. It has just been published.
My book is like an autism diary. I tell my story. I write about my feelings. I teach the truth about my autism.
I decided a few years ago that experts had made a lot of mistakes that everyone just accepted as gospel. Not to offend anyone, but how does everyone know for sure? Hard to know absolutely if the people you are dealing with are silent and can’t write or gesture. 
My early life was extremely frustrating because I did not have a means to communicate. I listened to my experts day after day say that I had to keep working because I didn’t know nouns, verbs, pronouns, categories, emotions, my relative’s faces, and so on and so on.
But I did. I was just trapped in an uncooperative body. 
That is why my book is called Ido in Autismland: Climbing Out of Autism’s Silent Prison.
Autism has been like a prison, but I have helped myself to make it a prison breakout.
Now, you can see that I’m hardly normal as I stim, stare and move oddly. But, believe it or not, I go to a regular high school, and I go to only regular classes, and with the help of my aide, I am there from 7:50 to 3:00, and I intend to graduate on time with a diploma and make my future.
I have thought often how my life would have been had I never learned to type. Isolated. Lonely. Bored. 
I know that what I am saying may make some people squirm and some celebrate. I really hope to show a new path to understanding a baffling condition.
Me and my iPad and me and my letter board are my voice to breaking free. If you would like to learn my story, please consider reading Ido in Autismland.
I thank you for your attention and your willingness to be challenged by an outspoken, silent guy.

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Posted in autism, autism theories, Communication, emotions, iPad, non-verbal autism, theory of mind

My Book is Available on Amazon

Posted on October 28, 2012 | Leave a comment

At long last my book is ready to be purchased on Amazon. Soon I hope to have a kindle version as well. I hope you find it interesting. Please let people know about it, and please consider writing a review on Amazon after you read it.
Thank you,
Ido

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Posted in autism, Communication, Ido in Autismland, Ido Kedar, memoir, non-verbal

My Book

Posted on September 9, 2012 | 2 comments

I started writing my book when I was twelve. I finished when I was fifteen. Now I am sixteen and it is close to publication. It has been a dream of mine for four years. When I started it I had no idea I would write a book. I was sad when I was twelve. I needed an outlet. I started attending regular school then. I was the only non-verbal autistic guy in any of my classes, except the autism room. I was adjusting to a surreal experience. On the one hand I was the only kid in my regular classes who didn’t speak. On the other hand, I was the only kid in the autism class who could type, so I felt unique and a bit alone wherever I was.
I saw a need to help people understand autism better. There were so many misconceptions. Inside I felt the urgency to help change things for my autistic classmates who saw me communicating daily but could only watch. No one thought to try to teach them too. I think I was regarded as unique, a “savant” for communication, and that what I did was irrelevant to them. Many days I wept in that year when I was twelve out of frustration for them.
When I wrote I started to think how I could change things. It was a relief to ventilate my loneliness or anger but that was not going to help them. I started to think about my symptoms. I realized that so many theories about autism are based on external observation by experts who interpret our behavior according to their theories.
My entire education up until I entered regular school was built on these external observations and theories. Lots of them were completely wrong. The real problem was that the non-verbal recipients of this education were too locked in to correct anyone. Not being able to speak, gesture, or write limits your ability to show your true capacity to learn.
So I decided that maybe I was an expert in non-verbal autism because I could explain symptoms from my own experience. The result was that my explanations were different from what my old teachers told my parents, and different from what the expert advice books told them too. My expertise didn’t come from a Masters degree in psychology or a class in Applied Behavior Analysis. It came from my own struggle living with autism since I was born. When I heard experts explain why I did things the way I did, before I could type, communicate, and tell them my opinion, all I could do was write my book mentally and hope one day I could communicate and tell my story.
My book is nearly here at last. Just a short time more and it will be available on amazon.com. It is my story but it is also a window into severe autism. I hope it offers a key to help other severely autistic people out of their prisons too.

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Posted in autism, autism theories, emotions, empathy, non-verbal autism

Getting Back to Normal

Posted on September 3, 2012 | 3 comments

Recently I had a challenging episode of autism at its most intense level. I can’t tell you how horrible it was to live in my body during that brief time, and horrible for people to be in my company too. I am sure I was helped by medication that stabilized my system. It is a lifesaver to have it, that’s for sure. It frightened me to have so little control over my emotional regulatory system, but I am getting back to normal. I have to make it up to the people who were near me then because I’m not happy I behaved the way I did. The consequence of this is that I have to try getting more self control during times of stress and change.

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Posted in autism, change, emotions, medication, self control, stress

Forgiving My Neurons

Posted on August 25, 2012 | 5 comments

How do I forgive my body? Stupidly it refuses my wishes time after time. My mind says, “Stop!” It has to go, hurtling into its own internal, impulsive deeds. What can I say? Autism is a really big challenge at times. It sometimes gets easier and I hope that is the trend, and then, out of nowhere, some new order is established. I must do what it says. My will is taken over by a body with its own mind.
I learned from hard experience that I have to fight it with all my might. I decided long ago that I would not be a slave to impulses that ruin my future, my present, and my happiness. However, I am not always sure or able to defeat the impulses. This makes me get really sad and start to hate my body, my neurons, and my trapped self. It is harder to fight impulses in a depression.
Now that I have moaned and whined, I must decide what to do. Can I give in or quit trying? Never. I must keep thinking that I will have the guts to keep on, even if it feels overwhelming. It is pointless to hate my body and neurons because I let them trap me in self rage. 
My body is not at fault. It is trapped too. My neurons aren’t at fault. They don’t hurt me on purpose. This is a crime with no criminals. I think I must let go of my frustration and anger. Wishing I wasn’t autistic may truly be the recipe for misery. My mind is free, my body strong, and my soul can fly.  If I let it go I can find peace inside. I must love my body as is. It is part of me, though I may not always feel that way, I will get no other. I may as well love it and get hope rather than hate it and get angry.
I think anger is only worthwhile if channeled to fix things. My anger was just a mass of resentment and fury. That is pointless and destructive. I am spiritual and I am sure God loves me as I am. If God can love me with autism then I can do no less.

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Posted in autism, disability, emotions, mind/body communication, self-acceptance

Back to School

Posted on August 14, 2012 | 1 comment

First day of school tomorrow. I will have English, Spanish, World History, Algebra 2, Biology, plus an elective and PE. It will be a busy, hard year. More than anything, I’m excited to be returning to school. My old math teacher is the same, and my new teachers seem really nice and tolerant of me. It is nice to learn in school. I value the opportunity.

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Posted in autism, education, high school, mainstreaming

Struggling for Self Control in a Sensory Overwhelming World

Posted on August 2, 2012 | 2 comments

It is the most intense feeling when I get overwhelmed. How do I describe it in polite terms? It is like the need to vomit. Do you think you have the ability to hold that in? Like it or not, the vomit insists on being released. The need to purge is stronger than manners, or place, or doing what is appropriate. The body defeats the mind’s wishes.
My response to strongly overwhelmed senses can also be an explosive outburst that comes like a tidal wave. Staying away from overwhelming situations helps but I can’t hide from the world. Sometimes I may be in an environment where the background music may be at a volume so loud as to be really agonizing to a person with sound sensitivities. That same environment may be so visually stimulating it is like a kaleidoscope whizzing at a fast speed. In the struggle of sensory blasts, we with autism struggle to keep it together. I think you can’t imagine the challenge of some environments. In the past I wrote how I felt overwhelmed by the crowds and visually blasting images in the rides in Disneyland. Many times there I get the feeling like I must escape instantly because my senses are overwhelmed, but these feelings can happen in many other environments as well.
Even after leaving a tough environment the effects may linger. I wish I could do more to stop the bursts inside because I may behave in a way I regret outside. The choice is to fight the intense feelings inside with so much effort (like fighting back the urge to vomit), or to have the feelings burst out. If I could figure out how to calm my system in these challenging moments, I would because afterwards I feel wretched and regretful. Thankfully I generally have good control now despite these moments that are so overwhelming. But this is still a great frustration for those of us with autism, as well as those who are with us when it happens.

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Posted in autism, emotions, sensory overwhelmed, sensory system, sound sensitivity

Going Back to School

Posted on July 31, 2012 | 1 comment

I am mentally trying to prepare myself to return to school in two weeks. We start so early it is still blazing hot summer. The summer break helps so much to prevent burnout, but now I will need to remind myself how to sit in classes all day and to not take breaks whenever I want. It will be like riding a bicycle, I hope.

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Posted in autism, emotions, summer vacation

What is Autism?

Posted on July 17, 2012 | 4 comments

I wrote the essay below several years ago when I was fourteen. It is published here for the first time. I hope to engage you in a dialogue about what autism is and how it is seen  by many people. It is my hope that we can change the way we understand autism.

What is Autism?

What is autism? It’s a long list of behaviors, or is it more? A diagnosis of autism is made only by looking at symptoms. Eye contact impairment, hand flapping or social delay only describe my outside actions, not what is wrong in my brain. Which part of my brain is the source of hand flapping? Why is my motor control erratic? Is my lack of speaking a sign of retardation or is it something else? (It’s something else I assure you). Is it a hint of what’s wrong that my hands aren’t coordinated or write legibly? How about my calm, flat face? Is it a sign of an empty shell or could it indicate a muscle/brain communication problem?
In a condition that is diagnosed solely on behavior, it would be nice if experts asked these questions, but mine never did. They looked at my outside deficits and concluded that my inside was equally impaired. I was assumed to not understand language, to not recognize my parents from a stranger, to not have a thought more advanced than a toddler no matter my chronological age. It was supposed that my brain could be molded in increments by drilling me in basic material like nouns or people in my family’s names or by telling me to jump or sit or touch my nose over and over. This was the educational model I grew up with. So, I am telling my experts what I couldn’t tell them when I was stuck in my silent prison for so many years; you were wrong. Worse, you were treating the wrong symptoms.
I didn’t need to be taught to understand. I understood everything as well as any other kid so I didn’t need flashcard pictures of trees for my brain to understand a tree. What I had was a body that needed to learn how to listen to my brain’s commands. I got answers wrong, not because I didn’t understand concepts, or was too retarded and limited, but because my hand and my body didn’t obey my brain consistently. I challenge those who study autism, and those who dictate our lives in school and home programs and in speech therapy and in OT and on and on, to imagine that the non-verbal autistic kid you see is not a mentally challenged person, however retarded he may appear, but is a thinking, interesting, understanding person whose body is a source of imprisonment. It is a new way of looking  at the illness, but I tell you, hard as it may be to see it this way, it is the true illness- not the observed symptoms.
My body is a source of frustration. It doesn’t respond when it needs to. It does mindless stims instead of purposeful action. It traps me in silence. It is a true puzzle. But despite this, my thoughts are true and clear and I can think and think and think. I believe that now that more and more non-verbal autistic people are learning to communicate by pointing to letters and by typing that we need to determine our own educational needs. It is time to end educations determined by experts who see only our strange outsides and refuse to inquire about our normal insides. It is time to force experts to open their eyes to a thing called the truth. It’s time because the devastating illness called autism can’t be cured as long as experts don’t see it in the accurate way.
I want a cure and I want communication now for all those still trapped in silence. This is why I wrote my book (to be published soon) and it is my dream that it may help my friends and so many other autistic people and their families to be liberated too. In my essays I explain autism from the inside out. I challenge widely accepted theories and beliefs about autistic people and I explain where they are incorrect. I describe my early education so people can learn how it felt to be on the receiving end of this kind of instruction, and I will share my emergence into communication and hope. This is my personal story, but I speak for many other autistic people too.
Thank you for listening to a silent boy no more.

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Posted in autism, autism symptoms, autism theories, non-verbal autism