I am reading Ido in Autismland: Climbing out of Autism’s Prison by Ido Kedar. This is another one of those MUST READ books. Ido is a non-speaking Autistic teenager who learned to write his thoughts by pointing to a stencil board using Soma Mukhopadhyay‘s RPM method. Ido now types on an iPad. When I first received a copy of this book, I admit, I was put off by the subtitle. You see, I was one of those people who once believed my daughter was trapped inside a prison that I called “autism” and for a long time I absolutely believed this. This thinking led me to believe that if I could cure her, if I could remove her “autism” she would be released from its prison. It was also this thinking that caused me to say how much I loved my daughter, but hated her autism. Once I discovered blogs written by Autistic people I began to reassess these various beliefs and finally began to understand how my thinking was actually harming her. I’ve written about some of this ‘here‘, ‘here‘ and ‘here‘.
But in reading Ido’s book and because I wrote directly to him and his mom about my initial reaction to the subtitle, I have come to understand that his reference to “prison” refers to being imprisoned in a body that does not obey what his mind wants, a mouth that does not say the words he wants to communicate and a society that perceives him as someone he is not. But more importantly this is Ido’s story and is about the way he perceives autism as it relates to himself and what he has been through as a result. To not read this terrific book because of semantics or because Ido’s perception of autism as “illness” is one I found unhelpful and even harmful to my family and daughter, would mean I would have missed reading a great book written by a really insightful and wise young man who had to fight against prejudices and preconceived ideas about who and what he was capable of. This is Ido’s story and what a wonderful story it is!
In the introduction, Tracy Kedar, Ido’s mother, writes,
“The ideas in this book challenge many assumptions long held by professionals working with autistic people. In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today. If we had continued to rely on the specialists and educators who dominated Ido’s early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated and hopeless. It is time for our understanding of autism to undergo yet another paradigm shift, and Ido, along with other non-verbal autistic communicators, is a pivotal guide.”
*The use of bold is mine, used for emphasis and is not in the book.
Just as a quick aside, Soma’s RPM method begins with written choices, progresses to a stencil board with the student pointing to the desired letters with a pencil, then to a laminated alphabet board and eventually to an iPad and computer. Soma or the person doing RPM does not come into physical contact with the student and once the student has moved to a laminated board, she even encourages the student to hold the board themselves. The final step is to move from the laminated board to independently typing on an iPad or computer.
This quote was written by Ido in 2008 regarding his body and mind and how the two do not obey each other.
“Time after time people assume that I don’t understand simple words when they see me move wrong. Understanding is not the problem. It’s that my body finds its own route when my mind can’t find it.”
Again in 2008, Ido writes about his life before he learned to communicate using RPM.
“They misinterpreted my behavior often. For example, I remember that during my ABA supervisions, I sometimes ran to the window over the parking lot in an attempt to show them that I wanted to go to my car. They didn’t understand how a non-verbal person might be communicating. Once, when I got really mad I urinated in my seat, but the supervisor just thought I couldn’t hold my bladder.
“But even worse was that they didn’t support me when I began to communicate. Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods. The response to everything was to give me drills. If I had a dollar for every time I had to touch my nose, I’d be rich. I remember one day they realized that I hated being told to touch my nose, so they brilliantly switched the command to “touch your head.” I felt like a prisoner of these theories and methods…”
“On Being Silent and Liberated from Silence”
“Can you imagine silence your entire life? This silence includes writing, gestures, and non-verbal communication, so it is a total silence. This is what a non-verbal autistic person deals with, forever. Your hopes dim, yet you persevere in going to ABA or Floortime (play focused treatment for autism) or speech therapy, all to no avail. The therapists can’t help and you despair, and only you know that your mind is intact. This is a kind of hell, I am certain.
“The experts focused on stim management, or drills of rote activities, or silly play like finding things in Play Doh, over and over, on and on. But they never taught me communication. I shouted to them in my heart, “I need to communicate!” They never listened to my plea. It was silent.
“I could read from an early age. I could write too, only my fingers were too clumsy to show it. In school I sat through ABC tapes over and over and added 1+2=3 over and over. It was a nightmare…”
Ido writes how when he was seven years old his mother supported his hand in an effort to have him help write invitations to his birthday party and how she could feel he was attempting to move his hand and in this way realized he could write. But things did not immediately change. No one believed him or his mother.
“My ABA team tried to convince my mom that she was wrong. This hurt me so much because I thought they’d be happy for me and teach me how to communicate better.”
My daughter has asked that I read Ido’s book to her, so I am. It has opened up a whole discussion about communication, what it means to not be given the tools to do so, what is autism, what it means to be autistic, being in a body that often does not do as one would like and what others believe as a result of actions you often have little if any control over.