Grandparents and Ido in Autismland
The book, Ido in Autismland, by Ido Kedar, was published in 2012. Its fundamental message is something that everyone – especially autism families – should be aware of: a highly intelligent, deep-thinking mind is sometimes locked inside of a non-communicative, constantly-stimming, terrible-behaviored, unresponsive person who is diagnosed with severe autism. Ido Kedar, who had made little progress during years of ABA therapy and was evaluated by all of the experts as having only minimal cognitive ability, found a teacher who used unconventional strategies and ignored the diagnoses of the experts and taught Ido to communicate. He credits her for saving his life.
Communication enabled Ido to reveal his high intelligence, and he went almost immediately from rudimentary “touch your nose” ABA drills to high-level performance in mainstream schools. His writings are professional level. His speeches are moving and profound. And if not for the unconventional teacher, he would still be locked inside of a physical body that he is unable to control and from which he is unable to communicate.
Why is this book, this basic concept, especially important for autism grandparents? The answer is that we autism grandparents are usually not overwhelmed by the daily stresses and challenges that autism parents continually face. We grandparents usually have more time to simply think, to observe, to see things holistically and in perspective. If our autistic grandchild is unable to communicate and does poorly with ABA therapy and is deemed to have low intelligence by well-meaning, highly-qualified experts, perhaps we grandparents are in position to be the only ones who can see some sort of “spark” that indicates that there may be a vibrant, intelligent mind locked inside.
Ido has autistic friends who, like he was, are locked inside uncontrollable bodies with no way to communicate, and who are subjected to ABA therapies that don’t work. (Over and over again Ido was given directives such as “touch your nose” which he understood but couldn’t cause his body to do.) But Ido found an unconventional teacher who used the Rapid Prompting Method (RPM – which “experts” continue to say is inappropriate and ineffective for use in such cases) and spoke to him as she would to a neurotypical person – rather than with simplistic phrases used in early childhood ABA therapy.
Ido first learned to point to letters on a letterboard and immediately demonstrated that he could read and write and was highly intelligent. Today he uses an I-Pad that, as with Stephen Hawking, vocalizes whatever Ido types. He gives speeches, writes a blog, and has now published a novel.
Nevertheless, most “experts” continue to disregard Ido’s plea that that there are many other persons who, like him, can’t communicate and have the “severe autism” label, but have a keen mind and intelligence locked inside. At first most experts thought Ido’s “coming out” was a sham, a trick, some sort of manipulation by his unconventional teacher. Although most experts now believe Ido is the real deal, most still cling to traditional therapies for persons like Ido.
Ido has determined that his mission in life is to help autism experts embrace a new paradigm for dealing with persons with severe autism who can’t communicate. He has friends who are this way, and he says he can often see that “spark” in their eyes. Maybe some of us autism grandparents have observed that same spark.