Non-Speaking With a Lot To Say

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.

Ido

44 responses to “Non-Speaking With a Lot To Say

  1. Just downloaded the book on my Kindle. Can’t wait to read it. Same for “The Reason I Jump”. How many stories will it take to reach the tipping point?

    • Haven’t gotten to The Reason I Jump. I’ve got two others in the queue before I get to Naoki’s. I just tagged you on a parent’s comment on FB. But I see it is in the comment’s thread here too. Maybe you have some insights for her?

  2. Ariane,
    Thank you for sharing this and your struggle with the title. My daughter is verbal , but not conversational. She is able to write and type. I am always trying to sort out in my own mind, why she would need training in order to communicate if she is able to type and/or write. What are your thoughts?

    • Here’s what I wrote on FB to you – (in case you didn’t see it yet) my daughter is what I have come to call, “unreliably verbal” meaning that what she says is not always what she intended to say or meant to say or even wanted to say. We have found that by typing, though if left to type alone, she will type favored scripts, she can and does carry on conversations that we have not seen her able to verbalize. I would love to see some research dollars go to why this is. At this point, supported typing and RPM seem to be the most helpful, though both are not easy to replicate at home and I can not claim mastery at all. (Both supported typing and RPM can be used with kids like ours with great results.) But I am determined and will keep trying to get better at helping her. There are a great many others who are way ahead of me on this road. Char Brandl, Judy Bailey and others have been helping kids like ours for a long time, they may have some thoughts that might be helpful.

      • Unreliably verbal is the perfect way to describe my son. We are currently reading Harry Potter, which I believe is probably his reading level,… but there is no way to know for sure. It is so frustrating because I know that WHEN he learns to be reliably verbal, I am going to enjoy arguing with him. For now, I just want to know that what he says and what he means are the same thing.

  3. Did my last comment post? Please let me know.

  4. I can’t wait to read this – it gave me chills just reading your review. I believe the tipping point is not too far away…

  5. Wow, fantastic post. I’m so glad you excerpted so much from the book. I rarely have time to read entire books, so getting a great sampling like this was so important, and made me want to read more. This is so inspiring, yet also utterly heartbreaking what Ido has had to endure. I know Emma has had to endure many similar horrors, like having to read “Billy Goats Gruff” for three YEARS in her Floortime school. Thank god for people like Soma and Ido and his mother who are opening our eyes to the truth about autism and leading the way to freedom, independence and perhaps most importantly, respect.

    • Thanks Richard. There’s so much he writes that I wanted to quote. I mean, truthfully the whole book is just kind of fabulous and he writes really well.
      The whole thing about “touch your nose” made me feel physically ill and it did remind me of all those years she had to “study” Billy Goats Gruff. How incredibly awful and really insufferable. How anyone thinks that is a good idea…. I don’t know it’s like let’s figure out ways to torture these kids with the most ridiculous tasks and requirements…

      “the road to hell is paved with good intentions…”

  6. Thank you for this recommendation and your personal exploration through this book. It is greatly appreciated! I’ll be reading this soon.

  7. Thanks for your thoughtful perspectives on this work- I will add it to my (now lengthy) list!

  8. This is my all-time favorite autism book- so far. Thanks for reviewing it and sharing. I think many more will read it now. These stories need to be heard!

  9. Bravo to Ido and to his mama! This story has two of my favorite ingredients… perseverance and trusting your own instinct. Thanks for putting positive energy out there Ariane. 🙂

  10. oh my please never stop writing this blog ariane 🙂 paving a path of beautiful awareness for kids like mine xo

  11. I echo all the comments above applauding your work Ariane. I know stories like this exist – I have seen them countless times in progress, but it still pains me to read about yet one more. I feel like I have said this until I’m blue in the face: “Non-verbal doesn’t mean a lack of ideas, a lack of desires, a lack of thoughts. It doesn’t mean the person is unintelligent or has nothing to say.” But they myth persists and if anything, I think has been fostered to the point where people who advocate for those that are not heard by others are looked at as though they are outside the mainstream. Meanwhile it should be the other way around. Which just goes back to presuming competence. THAT should be the mainstream. Presuming someone can and wants to communicate in some manner should be the mainstream. Not the other way around.
    In terms of DIR Floortime, I believe the way of thinking presumes competence and respects the child more than any other. Yet I know that there is no one-size-fits-all approach, and it saddens me to hear that Ido had what sounds like a terrible experience with Floortime as well. I am so pleased to hear that his mother supported him so, and I am pleased that he will now be heard by so many.

  12. On my list of books to read. I am on the waiting list for “The Reasons I Jump” at the library, but I think I am number 50 in line for it. I’m going to check to see if they have this one.

  13. Hi Ariane,
    I’m not sure we’ve met before, but we certainly know many of the same people (Doug Biklen is a long time friend, as are many of the other people you talk about). My partner Norman Kunc and I have attended and presented at the FC conference in the past.
    I love your blog, and would appreciate connecting directly with you. My email address is emmavdk@telus.net, and our website is http://www.broadreachtraining.com. Norm and I are working on a joint doctoral program looking at issues of movement difference as it relates to current rehabilitation programs for autistic folks and people with cerebral palsy.
    Let me know how/if/when we could connect. There are so many points of intersection here!
    Best, Emma Van der Klift

    • Hi,
      I know this was directed to Ariane and I just started posting believe it or not, only on this site because it is like after 20 yrs. Of searching independently, I finally found people who think like me and allow me to share without repercussions. Not only are the blog topics right on track with my thinking and my own daughter’s needs. That is a miracle because she is an enigma. I have taught a lot of students NT and special and I have not encountered any like her until reading Ariane’s blog. Plus Ariane has such kind words for everyone which is amazing she even gave an unknown like me such kind words of support. Unfortunately, I read a blog about a gait study for 7 to 11. Brooke is 20 but she was born with a club foot and diagnosed with cerebral palsy (mild) maybe 6 mos. Before Emory diagnosed her with autism. Her gait and motor planning has always been mentioned at speech. Anyway just find very interesting because it is part of Brooke’s etiology.

      • Oh Diane, I just hate knowing that it’s taken you 20 years to find others you feel safe enough to share without fear of repercussions! But I’m glad you feel you can here. I love hearing from you!!
        PS I deleted the duplicate.

        • Thanks a mil! The dog had my dental floss, Brooke had my perfume, and my husband was yelling that water was running somewhere(wonder who did that) and it was time to go out for dinner so it is a wonder any of my comments are even coherent god forbid duplicate. 🙂

  14. Hi Ariane,
    Thank you so much for the review of Ido’s book! Ido is also a blogger at http://www.idoinautismland.blogspot.com and idoinautismland is active on facebook and twitter. We are grateful to you for sharing his story and helping him to prove that “not speaking is not the same as not thinking.”

  15. Great book! I read it awhile ago and got that sick feeling in my belly too many, many times. So many things I’ve put my son through with good intentions. 😦 People like Ido, Emma and yourself are changing the way lots of people think, including me. Thank you!

  16. I’m re-reading “Why I Jump” right now and will read this next. Thanks for the review!

  17. For a flavor of The Reason I Jump here are five approximately 15 minute readings of excerpts originally broadcast by BBC radio in the UK.

    • Thank you so much for leaving this here, Ann. Just watched. Wow. Really cannot wait for my copy to arrive! And for those of you who are not familiar with Naoki (the writer of The Reason I Jump) he is one more reason to watch the brilliant documentary, Wretches and Jabberers, because he is in it!

  18. Thanks for sharing, Ann. It looks like another “must read”! I read The Reason I Jump and found it very insightful. The book has been hugely popular here in the UK, but it doesn’t seem to have caught on in the same way in the US. How has this book been received by American self-advocates, just out of curiosity? I’ve seen mixed reviews, and then of course, there are always going to be the skeptics, those who cynically believe someone else (presumably someone NT) authored or influenced the book. Like “Don’t Mourn for Us,” I found it to be a real game changer for me, and I’m so thankful he decided to share his story. Looking very forward now to reading Ido’s book as well. Thanks again for sharing. 🙂

    • hi Merry,
      Actually, I don’t know how The Reason I Jump is doing. I’ve seen a fair amount of press about it and am eagerly awaiting my copy. I will write more about it once I’ve read it. I don’t know that it’s been reviewed by any of the blogs with really big audiences, or if it’s gotten into any of the mainstream papers. Glad to hear it’s a hit in the UK. My guess is it will gather momentum here as well. Great to hear how powerful it was for you, makes me all the more eager to get my copy!

  19. awesome! The key phrase you used is “paradigm shift.” Only it is not our asd children who are doing the shifting, it is us, the “ordinarys”! We have to expand in order to understand them in ALL of their brilliance – and EVERY parent KNOWS there is brilliance there – even though it doesn’t come in a nice conventional bundle. Make no mistake though – their time has come! Technology can mediate, but there’s nothing like basic human-to-human communication and direct interaction. That’s coming too, but are we willing to streeeeetttch past our comfort zone to make the appropriate shift?

  20. We all have so much to learn!! I have been humbled by both books mentioned here, others, and many blogs. Each one is a constant reminder that every individual is unique. As an educator, now consultant, the educational system has a long way to go … sharing all this information with each school teams is a must!!

  21. Pingback: Seeing Others Write To Communicate | Emma's Hope Book

  22. Pingback: Ido Kedar’s Blog and Emma’s Response | Emma's Hope Book

  23. Read a couple of your posts (the other being the ABA one) & we seem to be definitely on the same page about things! I never had my son diagnosed & kept him out of the therapies & school system. I’m glad I did. I want him to know it’s okay to flap, & to be different. I celebrate his quirkiness! I love it & I love him & I see the great STRENGTHS he has far superior to his so-called “normal” peers (I use that word loosely). We work on the things he struggles with like manners, personal space & speech, but we rejoice & encourage things he’s good at & interested in. Life isn’t about fitting in, after all. Fitting in nowadays usually means compromising who we are & what we believe, and how’s that a good thing? Blessings.

  24. Pingback: Tackling That Troublesome Issue of ABA and Ethics | Emma's Hope Book

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