I am belatedly sharing an interview done with my mom and Vana Thiero on the Autism Live podcast last month regarding “In Two Worlds.” Since I was unable to be there in person, I participated virtually by pre-recording answers into my iPad. The second video has a live reading of Chapter 1, Beach Day, read by performer, Eli Bildner.
Many thanks to all involved, and especially to Vana and Eli.
My son Christopher is now 17. He is non-verbal and outwardly behaves in a way which would lead people to believe he lacked intelligence/understanding. The Rapid Prompting Method (RPM) has enabled Chris to show us, through pointing on a letterboard, that he is a creative and intelligent young man.
Ido has been an inspiration to us – his book particularly helped me to understand and to discuss with my son the issues he faces with his motor control/purposeful movement. When people see students like Ido using his iPad independently it is only natural that they aspire to getting their own children to this stage as quickly as possible. There is often a lack of appreciation of the amount of work that may need to be done before getting to that stage.
People say to me, “Why don’t you just get Chris to type straight onto a laptop?”- if only it was that simple! It is important to understand that the amount of time it will take to develop the pointing/typing skills will vary greatly between students and, as Ido has already explained in his book, the belief of the people who surround the student will also have a huge impact on progress.
I am sharing parts of our journey here primarily to help give some more perspective on this skill building process as, for us, it has taken a long time and is still a work-in- progress: — We first saw Soma in 2011 for six RPM sessions (and have seen her each year since then). Chris started pointing on the 3 large stencils and each day we saw how Soma built his skills through verbal and air prompts until he was able to point on the single A-Z stencil. We were also able to observe other students who were at different stages of RPM – some who had more motor challenges than Chris – some were already using iPads. It was clear that everyone had their own rate of progressing.
These first sessions were all a bit of a whirl wind. At the time it was difficult to fully appreciate exactly what Soma was doing and why – as a parent you find your emotions run high and it is hard to detach yourself and analyze what is happening.
It was hard to replicate Soma’s success at home. Chris was ‘all over the place’ – how had he been able to have a conversation with Soma? I had a small team of people working with Chris and we realized that we needed to first build our own skill levels before we could help him to move forward. How did we do this? – by analyzing and studying the videos of the sessions : how did Soma pass the pencil? What angle was she holding the board at? etc, We transcribed word-by- word Soma’s sessions –looking at how she phrased her questions and how she gave verbal prompts. Then we practised, filming ourselves, writing up our sessions in detail and giving each other feedback – continually setting improvement goals for ourselves.
Our learning never stops – constant analysis needs to happen even now as issues are always coming up e.g. Chris may spend time with his hand wandering around the board before getting to the letter he wants. When this happens we need to work out how to help him with the skill of getting straight to the letter.
One aspect of RPM which I feel is particularly important to appreciate is that it works using academics. Learning the skill of accurate pointing on a letterboard would be exhausting and tedious without a context. The teach/ask part of RPM lessons not only provides intellectual stimulation by giving Chris interesting information but also, when he is giving us ‘known’ responses, we can identify his motor challenges and the issues/skills we need to work on. We present a wide variety of age-appropriate topics – history, biology, physics, poetry, current affairs, art.
We also work on the skill of open communication – beginning with single words and gradually increasing to longer outputs. This is another important point – all of Christopher’s most creative and expressive work has been as a result of an academic lesson. There is a skill to this – we don’t just say, “now how do you feel about that?” We instead explore something related to the lesson and maybe discuss it in the third person eg. ‘if you were living in that era and writing a diary entry what would it say?”
– Once we had built up our skill levels on the stencil it was time to push Chris forward onto the laminated letterboard. This was after six months of practise on the stencils – (three sessions a day) and it was gradual transition – sometimes just a few letters on the laminate. At first we held this vertically and gradually began to tilt it. This process will vary greatly with different students -some need lots of ‘mirroring’ from one board to another, others can transition in a few sessions without a lot of help.
When you find a way to hold the board that works for your child at an angle that suits their ability to point accurately and have open communication it would be easy to stop and think you have achieved your goal. However this will always leave the child reliant on a skilled facilitator – I am always looking to move Chris on to the next skill to enable him to eventually become fully independent.
– So five years into our RPM journey Chris is currently pointing quite confidently on the laminated letterboard when it is held nearly horizontally. He can also point on a QWERTY keyboard which is held at a slight angle. He still needs verbal prompting to ‘keep going’ and his tolerance can vary greatly from day to day (he is also affected by some ongoing health issues).
We are working on his independence by mirroring words to either the laminate or keyboard flat on the table or held by him. I have learnt that it is not a great idea to compare Chris’s progress to others – e.g. some students can easily move from one board to another, some have the ability to ‘match’ so can easily touch a letter on the laminate and then on a keyboard. Chris, on the other hand, has to learn this all through muscle memory so requires continual practice and repetition – and lots of verbal/air prompting. I have helped other students to get started with RPM and learnt that every student is different and will progress at their own rate – so there is no rush.
Over the years we have done lots of skill work outside of the RPM academic sessions. I believe that all of these things also contribute to his improving letterboard skills. Skills have included physical exercises (including participation in Special Olympics events), horse riding, playing games, learning to draw, helping around the house.
Everything we teach is focused on helping Chris to move his body purposefully and independently. Each action has to be broken down into small component parts, explained and motor-modeled so his muscles can learn how the movement ‘feels’. Just to explain further , Chris cannot just imitate an action -I have to physically lift his leg, touch his thigh muscles telling him to engage them to show
him how to step over a hurdle. Then we have to practise, practise, practise and practice until he has the muscle memory to enable him to move onto the next skill – running over the hurdles (he can do this now!). I believe it is possible to teach him anything – but it will take longer than for other people.
In a recent discussion with Chris he wrote, “MANY PEOPLE
DO NOT REALISE THE IMPORTANCE OF BUILDING SKILLS. I DIDN’T REALISE THE IMPORTANCE MYSELF UNTIL I BEGAN TO WORK ON THEM. BUILDING SKILLS IN A VARIETY OF WAYS – RUNNING, SPORTS, CRAFTS AND GAMES – IS HELPING ME TO CONTROL MY BODY, LEARN NEW THINGS WHICH BRINGS ME ENJOYMENT AND HELPS ME TO BE ABLE TO BE PART OF THE COMMUNITY.”
Here is a short clip of us discussing skill building in relation to his pointing
IT HAS NOT BEEN EASY. EVERY DAY I HAVE TO PRACTISE.
How do you feel about using the keyboard/ipad?
IT IS HARD TO LEARN NEW SKILLS. I AM SLOWLY IMPROVING BUT IT TAKES A LONG TIME.
What Chris said above I can equally apply to myself. I am constantly learning with him, developing my own skills and know that I still have so much to learn. Some days it seems that the journey is insurmountable – but breaking it into small achievable goals makes it more manageable – one day and one step at a time!
A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now.”
Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.
How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a “low functioning” autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.
I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.
I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.
Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.
Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).
How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.
Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.
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.
To a person without a disability it must be hard to imagine life with one. I think it is hard to imagine having a disability even for a few hours, so it is much more difficult to imagine living with severe limitations life long. I have not lived one day without autism. It is hard to imagine my life without it because I’m part of autism and it is in me. My mind is intact. My soul is free, but my body is the property of something else. This “else thing” is called autism. It looks like this: weird body movements, noises, lack of responding at times, a mask of flat expression on my face, impulse problems, and an overly sensitive sensory system, which is why I sometimes wear headphones.
But perhaps more difficult than all of the above,is the attitude of others. It is obvious by my actions that I’m not smart, right? OK, not right. But you know my limitations make me appear not smart at times, and then people assume. It’s not so bad now because I type on an iPad , so it is obvious that I think and read, but I still need to prove myself to each person I meet. This is life with a disability like mine. People don’t know or understand, and there are a lot of misconceptions.
It is more lonely to be autistic than not, especially for people who can’t communicate. I have an exercise for you. Imagine that though you think just fine your mouth is unable to speak your thoughts. This means no phone conversations, no singing, no long talks (or short ones), no calling your dog, no telling people your ideas, how you feel, or your needs. In other words, very quiet and very stuck. You listen all the time to the conversations of others, but you can’t join in. Ever. Not for an hour, but forever. Now imagine that your hand is wobbly and doesn’t obey your thoughts either, so the option of writing is gone. That is isolation.
Now it gets tougher. Your body doesn’t stop doing odd movements. You behave oddly because of that. Now you have a taste of autism. But I think one more taste will help you get it. Imagine all this, and put yourself as a kid into school with others like yourself and see yourself in a class doing the same boring lessons day after day, year after year, such as the days of the week, the weather, the ABCs, the 1+1s, all because your outside has fooled people into concluding you are dumb. Then the school tells your parents you don’t understand.
So now you know about my early life. I was lucky to escape my internal isolation because I was taught how to communicate, first on a letter board and now on an iPad. This enabled me to leave my special education environment and enter a general education one. My old classmates still remain in the same special education class. None have been taught to communicate yet.
In autism we are thought to be limited rather than trapped. I think the number of so-called mentally retarded autistic people is greatly exaggerated. How smart would you look if you couldn’t talk, gesture, write, or control your movements? It is a true frustration living like this with society’s misunderstanding, so I am grateful to begin changing perceptions.
I will post films of me using my iPad soon. It is starting to feel natural to use it, but I hate when the camera is on. At first I get so nervous I make simple mistakes, but thankfully I relax eventually. I love the game Temple Run on the iPad. I am addicted to it. Ha ha. I remember I used to hate games but I love this. Well, this is a lot better than forced drills of playing Candyland. Man, was that insipid. I love improving my scores and getting better. The technology is so awesome today and it helps me in life.
The iPad is really intriguing. Technology is helping me find a place in the world. I have been liberated by my letter board which first gave me a voice. Though I have never been moved or touched when I use it, because someone else holds the letter board up, some people call it facilitation. This bugs me because it is so obvious I communicate myself that it takes bias to cast doubt. But that is the reality of being a non-verbal communicator.
The old keyboard I had was tough to use. The voice was robotic and the screen small. In more than a year I still resisted it because it was cumbersome. My iPad is working out better. No one holds it. It is propped on a table. No one touches my arm, as always, and the voice is more human. The transition is hard, but I’ll do it.
The world of non-verbal autism is changing thanks to assistive technology. When I was small, the best I got as a communication tool was PECS pictograms. For those not familiar with PECS, it is a system of basic needs communication and it looks like this.
In recent years, new devices have flourished. I started communicating on a letter board, a low tech way to point to letters. I still use this method often because it is fast, portable, and if I mess up a board there is no loss of expensive equipment. Here are some types of letter boards.
And mine has a math side too.
Now I have been using a dynawrite also with word prediction and voice output.
Some kids use a fusion,
or an iPad. Recently many non-verbal kids I know switched to iPads and like it. It shows their work in stored memory which is good for school.
The thing is, any method involving letters needs to be taught because autism limits the motor planning to do typing or pointing clearly. None of us learned this skill in school. We all went to someone who had to patiently teach us how to express our thoughts in this modality. Then our moms worked really hard with us at home. The journey to communication is long and hard and starts with the opening of a door.
I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second – on becoming a free soul. I had to fight to get an education but I succeeded, graduating high school with a diploma and a 3.9 GPA. I am continuing my education in college. I communicate by typing on an iPad or a letter board. My first book, Ido inAutismland is an autism diary, telling the story of my symptoms, education, and journey into communication. My second book, In Two Worlds, is a novel. I hope through my work to help other autistic people find a way out of their silence too.
My newest book is now available in paperback, on Kindle, and on Smashwords!