PsychiatryTalk

Ido in Autismland : Book Review

Posted on May 28th, 2013 by Dr. Blumenfield

 

Ido in Autismland by Ido KedarIdo_in_Autismland_Cover_for_Kindle

Although I am not an expert in this area, I believe that this will be a landmark book for families, educators and any professionals who work with young people with autism. It is a book of short essays written by a 15 year old about his experience with his condition starting with some pieces written when he was 12 years old.

What is unusual, unique and very important about this author is that he cannot speak and only when he was about 11 years old did he begin to communicate by pointing to letters on a letter board. Up to that point no one had any idea that he was an above average intelligent kid who began to read when he was about three years old. He was terribly frustrated by being treated by well meaning experts in autism and education by drilling him on simple exercises meant for a three year old child who was having trouble learning. He was asked to point to his nose which he often could not do and was judged accordingly.  Even when he began to point to letters and make intelligent sentences, just about everyone thought that his mother was guiding his hand since she had to steady it for him to point. It took his father, who is a scientist, two more years before he was convinced that his son was truly communicating fully formed intelligent sentences. The problem would seem to be that he could not control his body. He often would have great difficulty even signaling that he could make even  simple calculations or understood basic concepts.  This was further complicated by his arm flapping which would occur when he was anxious which he referred to as “stims” . Other times he would do unexplainable pieces of behavior such as pulling his Mom’s hair or that of beloved aide when he was frustrated or embarrassed. This pattern of behavior is common in many children who fall under the rubric of autism except they are usually not recognized to understand things and mainly have trouble in controlling their bodies to communicate. Instead they are often deemed “retarded” and/or  “developmentally handicapped.”

Ido believes that he is not “one in a million” and that he has had indication that many of his friends with non verbal autism are as frustrated as he used to be. Once Ido proved he could communicate with a letter board and then on the keys of a computer, a new world opened up to him. He was put in mainstream classes which he would attend with an aide and has entered high school with the aspiration to go to college. It is a constant uphill battle, as while the administrators of his middle school were very supportive, he found that was not the case of the first high school which he entered. Obviously, it did takes a great deal of resources and some special accommodation to allow him to function in a regular high school environment. After transferring to a second high school he seemed to be quite adjusted as he continues forth.

This book traces his progress as well as clarifying many of his characteristics and experiences. For example he sees people in different colors such as red blue, yellow etc. which are related to their emotional state perhaps in relationship to himself. He is also very sensitive to sound and appears to have very keen hearing . He therefore at times gets overwhelmed by loud noises, certain music. being in the presence of multiple people talking . These and other situations can cause him to have what would appear to be overwhelming panic attacks. This is not only experienced as severe anxiety but it intensifies uncontrolled movements of his body. Over the years he has found that various types of physical training and exercise actually improved his self control, something that was not initially recognized as it was neglected in any attempts to assist him.

I found it interesting, as a psychiatrist,  that he did not mention whether or not he was given a trial on any anti-anxiety and anti-panic medications which are believed to directly  effect various pathways in the brain which are involved when people have such overwhelming emotions. I would imagine that the medical experts in this field have evaluated the  effect of such drugs as an adjunct to his treatment program but if they have not, it certainly should be done.

Ido frequently mentions that he knows that he has an illness that places many limitations on him but he prefers to focus on what he can do and what he hopes to be able to do in the future. He also is dedicated to teaching the public as well as families of children with autism and experts about the potential of people like himself.   Ido would probably say “so called experts” since he has a sense of humor and he is keenly aware of how so many experts have misinterpreted his abilities). Not only is he becoming an advocate but he must be also considered to be a hero for so many people who are locked in the land of autism. 

For a view of brief video clip of Ido at a meeting as one of his speeches is read go to:  http://www.youtube.com/watch?v=V4VR1KYRX8s

 (This book can be purchased through AMAZON by clicking the AMAZON link in the right hand column)

3 Responses to “Ido in Autismland : Book Review”

  1. Bianka Middleton says:

    Thank you for this amazing review! Because of this book, I used this communication method with my 14-year-old who was very limited verbally. He could ask for food,etc, but not converse at all. Because we began this learning method, my son can now type independently on a keyboard or ipad! It took months of hard work on my son’s part. And, he essentially echos what Ido say. That he is not is good control of his body, and works hard to point to letters. THIS is the struggle, not cognitive dysfunction. Furthermore, my son agrees that he is much like his non-verbal friends, but they just haven’t been able to communicate yet.

    • Thank you for this comment MB

    • Violet Jones says:

      Dear Dr. Blumenfield,
      Wow! I am so impressed with your review of “Ido In Autismland”! My son learned to type on an iPad, using the same method as Ido. Further, he echos Ido’s claims of extreme anxiety and sensory overload, along with difficulty controlling his body and mouth. My son, too, was in an ABA program, which did help with skills such as dressing, printing letters, trying new foods, etc, but which completely missed the boat in communication and education. While it is understandable that my son’s team could not see his challenges for what they were, it was most troubling when, in light of my son’s communication breakthrough, they refused to change their opinion of his abilities (and really refused to even watch my son type). My son has since participated in assessments of his communication and educational level through our autism center, and his typing has been accepted as authentic–and his educational level is deemed to be advanced for his age. Further, my son’s psychiatrist is very much in support of my son’s abilities, and realized no person is tainting his independent responses. (By the way, my son’s psychiatrist has trialed an anti-anxiety medication, and we have found a very low dose to be somewhat helpful, while a typically therapeutic dose increased agitation and anxiety.)
      So, I wonder why, you, Dr. Blumenfield, and other psychiatrists can believe that our non-speaking or minimally speaking people on the autism spectrum can be intelligent, while behavior analysts can not? ABA, which relies on OBSERVABLE behavior to devise intervention plans, simply does not take into consideration the motor limitations (although they are well documented in peer-reviewed literature), and other neurological manifestations such as sensory overload and anxiety. I so much appreciate that you are able to admit your surprise at Ido’s reality. It takes openmindedness, and a measure of admitting that you can’t truly know what is going on in someone else’s mind until they can tell you. This, I believe, is the first enormous step in understanding and truly helping anyone on the spectrum reach their goals. Thank you so much.

Leave a Reply

Your email address will not be published. Required fields are marked *