Category Archives: autism theories

The Courage to Hear, to Learn, to Change

Guts means the courage to change. My book, my speeches, and my efforts have challenged people who have gotten accustomed to seeing severe autism in a traditional way. We need rudimentary lessons. We need drills to learn words, understand emotions, recognize the people in our lives, notice gender. We need baby talk because we don’t understand English or speech. We need M&Ms because we have no motivation. It is an illusion to imagine we can be more.
So, I am honored and amazed when parents and educators write to me that my explanations changed this thinking after years of seeing it one way. One person said it “hit him like an anvil on the head.” One described how he was, “shaken to the core.” One mom wrote a long letter about how she had always believed that the potential for her son to type was “delusional,” but after reading my book she understood how he could be smart but trapped internally. Now she types with him freely. He is 20 and finally able to communicate his ideas and finally is seen as intelligent. Brave moms, Brave dads, because they now have to face systems that have to look at why their methods could not see this possibility in the person with autism.
“I now speak normally with my son and it has changed everything,” I hear over and over. “I see my students differently,” I hear as well. One brave teacher wrote that she now wonders if she has been going at it wrong for decades. Kudos to them for thinking openly. It is guts.
I will tell you one lady with guts is my old teacher from when I was small. I write in my book how I loved her in spite of my frustration and boredom in her class due to babyish lessons and repetition. Fate has plans and recently my mom ran into her many times after years of no contact. After several weeks she told my mom she would like to read my book. I knew it would be painful for her because I talk about her- not by name, but she would know. I wrote her a note. After reading my book she came to my mom with a letter for me. She wrote that she tried to read it through my eyes. She was powerfully impacted and was determined to teach differently, to see her students differently too. She has been teaching a long time. This is guts and I admire her.

One in a Million, or So

Have you noticed how many new books are coming out by severely autistic, non-verbal people? If you look at my book on Amazon you can see many other books recently published by teens who type. I am glad to see it. Routinely experts claim we are one in a million if we get out of rememdial education and communicate fluently. I think the number is too high. If more and more autistic authors have books we each are less than one in a million, right? Maybe by now it’s 1 in 10,000 or so (Drat, I’m not so special after all, ha ha). Maybe every severely autistic person in the world will have to write a book to end this theory. Since we all express the same message of intact mind and impaired motor control, when will the theories shift to the truth?

Option 1- We are all fake trained monkeys scamming you.
Option 2- We are one in a million (and going down).
Option 3- We don’t have autism. (It’s miraculously cured once we type, lol).
Option 4- The theories are wrong.

If all non-verbal writers have the same message, that is something to consider, isn’t it?

Truth Over Theory


I had an interesting conversation with a university professor this weekend about autism. I enjoyed it very much because he was so open-minded and interested in learning new information about autism. That is like a near miracle. Ha ha. More often, I think, people get used to their theories and stay there their whole professional careers. He invited me to do a training for his staff of professors and has assigned my book to two of his classes. This is very cool. I love the chance to open people’s minds. In the near future I will be speaking to staff at an autism agency, giving a speech to families and staff at a disability support agency, doing an interview on internet radio and maybe more. I hope little by little to help influence a change in out understanding of severe autism. With the new DSM out in May, it is an uphill struggle, but I believe truth will triumph over theory in the end.

From My Speech at the Vista del Mar Autism Conference

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.

My Book

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.

What is Autism?

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.

Autism Expertise

I think it is easy to misinterpret the behavior of non-verbal autistic people who can’t communicate. It happened to me often in my youth when I had limited output. Lots of interpretations of my actions were pure guessing by professionals, but I could do nothing to challenge them or correct their ideas. Recently, I have been talking to some professionals in order to fix this. They describe the puzzling actions of a non-verbal autistic kid, tell me their interpretations, and I get to give my two cents. This is important because my two cents is really different from their interpretations. Being autistic myself, I see the behavior in a totally different way than they do based on observation and theories.

Can People Really Outgrow Autism?

This is an interesting article. Is it possible to outgrow neurological symptoms? I doubt it, but I do believe the brain can accommodate some neurological problems in other neural pathways and overcome some challenges. I don’t think we can outgrow autism. We just adapt and try our best. What do you think?

If They Were in My Old School

Tomorrow I start over in my high school. I transferred mid-year to a new school. I was very miserable in my old high school. I won’t elaborate now on what happened or why I had to go to have a happy high school experience. I got lucky. Two days before the semester ended my parents were able to get me into a new school. I think it will be a much more welcoming environment.

I wonder how my old high school would have treated Stephen Hawking, or Helen Keller, or Erik Weihenmayer if they had been students there. The first two were communication impaired and required one on one assistance. Helen fingerspelled her ideas into Annie Sullivan’s hand. She was independently thinking, not writing, in her earlier years. Would she have been accused of not doing her own work? Would they have resented her noises and too visible disability? Stephen Hawking is needing a lot of support. Would he be seen as an expensive burden, or worth giving the trained help he needs? Erik Weihenmayer is blind. Who knows? He might hurt himself.

The reason I bring up these three amazing individuals is not to compare myself with them but to imagine how my old high school would have treated them in the years they were different, severely challenged in a big high school environment, but not famous yet. I think it is easy to know the answer. Maybe they would have decided enough is enough like I did.
Onward and upward. It is time to start over.

New Ideas

I read this article today in the Wall Street Journal. It describes how the usual pattern for reacting to new ideas is to dismiss them. Earning credibility is hard when systems have invested in maintaining the status quo. The article cites resistance to plate tectonics, new medical ideas, and some other theories later proven to be right, and it also mentions that many new ideas are also wrong.

Sometimes well-meaning people follow a wrong theory for years. It is always interesting when the theory is disproved. All those lives that were negatively affected by the theory are now told, “Oops”.With ulcers my grandfather had part of his stomach surgically removed. Now they know it’s a virus. Oops. Weird theories in child-rearing, and education, and mental health are now disproved and some theories popular now will be disproved in the future, but we can’t know ahead of time which is wacky, which works, and mostly how to stand up to the naysayers.

In the fifties people were sure autism was a sign of emotional neglect on the part of a cold “refrigerator” mother. This idea was miserable for mothers and autistic kids. I suspect that when new theories that viewed autism as a neurological illness came out that many mental health therapists who were making a living on treating autism with emotionally-focused therapy resisted the new ideas because they were invested in their theory.I think it is still the same today with the popular theories and new ways of seeing autism, but I think it is starting to change gradually, and I am so grateful to Soma for being one of the intellectual heretics who is right.