Category Archives: non-verbal autism

Out of the Closet

Posted on June 23, 2014 | 14 comments

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?

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Posted in "low-functioning" autism, ABA, apraxia, autism education, autism theories, autism treatments, Communication, letterboard, mind/body communication, motor planning, non-verbal autism, typing

On Education and Communication; A Message to Parents, Professionals and People with Autism

Posted on June 9, 2014 | 20 comments

School is finished at last. The year was tough but I learned a lot. I read great literature. I loved US history and understand my wonderful nation better. Chemistry was fascinating too. Learning how our universe is composed is thrilling to me. Me gusta aprender español también. I learned a lot about math and animal science too. All this is thanks to my index finger and typing my thoughts.

I have the desire to pursue a college degree. One more year of high school and this dream will be a reality. Over spring break I visited many colleges with my parents. It will be different than all day, every day, of high school in one place going room to room. But I will have the opportunity to get more education in biology, neuroscience and other fields, and maybe I can help improve our understanding of autism in more ways.

I push myself to get good grades. It matters to me that my grades show my intelligence. My teachers were great. They pretty easily adjusted to my mode of communication and welcomed me warmly. My life is so rich now. I have friends in school. I love to go.

My message is to parents who wonder if their child can learn. Only the most determined parents will find out. If you are working with experts like those from my early life, they limit your child in low expectations. They tell you that being impaired in body is being impaired in mind. They let you work on skills that barely progress and tell you that your child isn’t advanced enough to write.

If you keep on listening to them they will keep low expectations for a lifetime. I know it is hard to be the parent who disagrees. I watched my mom try to deal with my ABA team when I began to communicate at seven. I have  watched our friends fight school district attitudes. They went through a big hard slog. They also got their kids typing and into general education. More than anything else, the parents believed in the possibility that their child had more in them than they were told. Parents, you have to trust your guts. You see your kid all day in real life. They see a drill or a lesson, and these moments where the motor issues of severe autism are at their worst.

Professionals, I have a message for you too. I used to think you were all clueless and control freaks. This is not to say that people were not warm or kind because I liked my clueless teachers as people but resented their attitude of certainty. If you work with autism, be prepared to accept that a degree in psychology or sociology or speech pathology or occupational therapy isn’t giving an insight into more than symptoms. My brain and how it’s impaired is a guessing game, even for neurologists, so I think the certainty that many practitioners have when it comes to autism is really puzzling. Being open-minded and admitting that the brain is vast and mysterious is required, in my opinion, by anyone who works with severely autistic people.

Now I have a message for people with autism who can’t yet communicate, and I ask parents to read my essay to their kids, Have hope. More than anything, have determination. Life outside your head and stims is really worth striving for. I believe soon there will be too many people with autism who type to keep insisting we are one in a million. I am fighting for your freedom and so are others. Hang in there.

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Posted in "low-functioning" autism, autism, education, non-verbal autism, parents, professionals

Turning the Titanic

Posted on December 20, 2013 | Leave a comment

Guest Post
By Tami Barmache
We live in an exciting time! A time when people are starting to think that maybe the children and adults that we were certain were receptively and cognitively challenged are actually bright, literate, capable, and gravely underestimated. As a mom of one of these underestimated children, it certainly feels like change is in the air. The tide is turning!

It may be like turning the Titanic, but maybe once we start to build momentum and inertia takes over, there will actually be a paradigm shift that will change the lives of countless incredible, bright and often misunderstood individuals. We are missing out on so many gifts and insights. If people only knew!

My heart is beating fast just thinking about how I feel every time my son, Dillan, shares his thoughts with me. Everything from simple opinions, to funny stories, and profound insights. It’s life changing for all of us. He feels like his life began when he started to communicate. That’s not an easy thing for a mother to hear, but it’s honest, and I can only imagine how limited his world was when he had no way to express himself. 

Dillan began his journey to communication when he was 10 years old. I fought hard within myself to dig deep and follow through with the practice, but Dillan’s resistance, and mine, often led us astray. We were fortunate to have Tracy and Ido to re-motivate and inspire us along the way. I remember sitting in the park with them one afternoon looking for some words to propel me forward again. Ido told me that “autism is a deep pit…don’t give up.” 
I never gave up. I urged his teachers and therapists to see who he truly was, to raise the bar, to give him the opportunities he deserved. I don’t know if my desperation was apparent from the outside, but inside I was screaming. “Don’t you see????” I showed video of him doing math and writing stories, explained the process, and tried so hard…so hard. But sometimes a journey has it’s pace, no matter your plan. It took several years and the right support in place to finally achieve the daily communication and learning opportunities that Dillan has now.

Today, things are finally moving in the right direction. I must admit that it is taking Dillan a bit longer to become fluid in his typing with me than it has with some others.  That being said, we are getting “our groove” and improving every day. We will have to work together to sort through the pain, frustration and hopelessness that Dillan experienced all of those years, but it’s never too late to find a voice…never too late! 

The documentary “Wretches and Jabberers” features two incredible men who began typing later in life, and I’m sure many other have been able to communicate after years of silence as well. It’s never too late. As parents, there are a lot of intense feelings to face in this process, but none of them compare to their sentence of silence, so we have to take a deep breath, support them, push for them, and celebrate who they are and have always been. It’s painful. But we can do it. We must do it…for them. But we don’t have to do it alone. We can build a community to support each other, and to provide opportunities for learning and practice.

We all need communication. Real communication.

As Larry Bissonnette (from “Wretches and Jabberers”) said so well at a recent event: “Operating pictures on a board brings you cheeseburger, typing lets you create the menu.”

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Posted in autism, Communication, Larry Bissonette, non-verbal autism, Tami Barmache, typing, Wretches and Jabberers

Opening of my Remarks at CSUN Department of Special Education Commencement

Posted on June 6, 2013 | 2 comments


It is a great honor to speak to future teachers in special education. I began my life in special education of the most restrictive sort. My early years had to be my hardest because I had no voice at all. I want to challenge you to be open to teaching those who may currently lack the ability to show their intelligence, but who still deserve the opportunity to learn.
  It is hard to be a teacher of kids who don’t communicate. The kids don’t have writing, or gestures, or speech, or facial expressions, but that doesn’t mean they can’t think. Lack of communication isn’t only a sign of cognitive delay.
I’ll give you an idea of my early life in my low, remedial autism class. My teacher was warm, but there was no instruction of any kind beyond the weather, 1+1, and ABC. Forever. I think it is pretty boring, don’t you? It is worse when people treat you like you’re not intelligent. Baby talk and high fives and “good jobs” instead of normal communication.
I think the idea that all non-verbal people with autism have receptive language processing delay is not accurate. I don’t have receptive language issues but I sat in this classroom for years, unable to show my true capacity.
It is important to not be overly confident or certain when you deal with people who can’t communicate. In fact, it is essential to have an open-mind, because more kids than you imagine are like me. How people escape this prison varies, but we must have the opportunity.
I feel that you, who are embarking on new careers in special education, need to know that a kid like me will be in your class – that is, a kid like me before letter board or iPad – who just can’t get his ideas out.  To be a great teacher you can’t be his prison guard. To be a great teacher you must find intelligence and give the hope of freedom in communication. To be a great teacher you must give a real education to those kids who may look stupid in the eyes of many, but who think, and feel, and pray every day for the chance to show who they are inside.

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Posted in autism education, Communication, CSUN speech, non-verbal autism, special education

The DSM, Asperger’s, Autism and the Diagnostic Criteria

Posted on December 22, 2012 | 3 comments


I think the American Psychiatric Association’s decision to eliminate Asperger’s Syndrome from the new DSM is not very smart and I’m not sure what their motivation is. It can’t be based on seeing people like me and seeing people with Asperger’s as identical in terms of symptoms. In a spectrum, I’d assume we’d be the same, just milder or more severe versions of each other. But it isn’t exactly that.
I think rather than lump everyone together under one big, fat label, the psychiatrists at the APA should try to notice how many differences there are in the symptoms. It is frustrating to me to need to show them the obvious, but researchers, in my opinion, seldom pay attention to non-verbal autistic people. Even when those non-verbal people who can communicate by typing describe physical symptoms different than Asperger’s Syndrome, many researchers look to Temple Grandin and others, not to Tito, or Carly Fleischmann, or me, or other non-verbal people who type to explain our experience of autism.
Let me help the APA.
Temple Grandin
*Independently drives, rides horses, shops, cooks, etc.
*Lives alone.
*Initiates actions throughout her day.
*Excellent fine motor control. Able to use hands to graph detailed engineering projects.
*Talks.
*Has difficulty interpreting people’s behavior.
Ido Kedar
*The opposite.
To make it clear, I have no difficulty understanding human behavior, but my brain and body are not working well together. In common, both of us have sensitive sensory systems, poor eye contact and shyness.  But, people with asthma, and people with heart disease, and some people with cancer all may experience shortness of breath but that doesn’t give them a Breathless Spectrum Disorder.
I think researchers might want to look at the big differences in symptoms and adjust their diagnoses to fit, rather than squeezing everything on a continuum that may actually be different conditions.

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Posted in American Psychiatric Association, autism, autism research, diagnostic criteria, DSM, non-verbal autism, Temple Grandin

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

Cages

Posted on October 1, 2012 | 1 comment

My autism is just like a cage. I can look out and see the free people, but I stay stuck inside. I think the lion that paces in its cage gets used to its routine and knows the bars don’t open, but the lion doesn’t realize that other lions roam freely over vast savannahs, and that food doesn’t magically appear from nowhere.
It is different for me because my cage is like an invisible barrier. Bars, not of steel, but of impulsive behavior, stims, and limited speech have the same result though. I watch the people move around me and I am stuck behind my barriers. 
I watched my sister celebrate her birthday with her best friends this weekend. I couldn’t joke, talk, or join in. I told myself not to get lost in the jealousy because I envied her social pleasures – not that I listened to my own advice. In that way I am unlike the lion because I know what I can’t do yet. People overlook me because I am odd, or because I don’t speak, but I still watch, wishing one day to be liberated from my cage that traps me inside my own body.

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Posted in emotions, isolation, loneliness, non-verbal autism, social behavior

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.

2 Comments

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

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

Autism Expertise

Posted on July 8, 2012 | Leave a comment

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.

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Posted in apraxia, autism theories, non-verbal autism