November 24, 2012
A Guidebook for the Land of Autism
As a society, we’ve grown more tolerant of people from different races, sizes and abilities, but we are truly able to accept people whose communicative ability far outstrips their outward behavior?
The question becomes key to the acceptance of non-verbal autistics who are able to use typing devices of various kinds to communicate their ideas, needs and wants, but can only vocalize a few words, coming across like toddlers even if they are teenagers. This dichotomy of inner intelligence/understanding vs. outward strange behavior is at the core of the remarkable and important memoir written by Ido Kedar, a 15-year-old teen in Southern California with autism (and a long-time family friend).
Titled, “ido in Autismland: Climbing Out of Autism’s Silent Prison” the book chronicles his journey from age 12 to age 15, and shares what it is like to go from being silent to having a voice, and his dream for his friends and other non-verbal autistic people to be liberated as well. As family friends (we first met Ido and his family in The Miracle Project theater project, now at Vista Del Mar), we have personally witnessed this transformation, and always learn something new from him at our 2nd night seders together.
As his mother, Tracy, explains in the introduction to the book, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get the words out or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.”
With the assistance of Soma Mukhopadhyay, who discovered a method called “Rapid Prompting” to teach her own severely autistic son, Ido learned how to point at letters on a board, slowly spelling out words, and eventually transitioning to typing on an iPad as well.
Ido’s talks about his frustration and resentment of so many of the “experts” he encounters who doubted his intelligence and misinterpreted his behavior. For example, he sometimes ran over to a window during therapy sessions when he was younger and the therapist thought he was “fixated on cars” but all he was trying to communicate is that he wanted to go to his car and go home.
In fact, one of my favorite stories is that at one of the schools Ido was attending, the administration didn’t believe that Ido was actually capable of self-initiated communication until he started inserting expletives with each of his vocabulary words. Amazing what a well-placed f-bomb can do to get some people to believe.
Although Ido’s intellect is finally given expression after he is able to point/type letters, he is still unable to control his body’s impulses. He writes, “I live in a world of high thoughts and primitive impulses. So I impulsively pour things down the drain or open things I shouldn’t because I follow my body in those moments.” His whole sensory system is wired differently than typical people so his sensory experiences are very different; he can see people’s auras, so that his “mom is blue and my dad is yellow”. He feels a need to taste objects and when he hears notes in music, he can see each note visually. No wonder it is so easy for him and other non-verbal autistics to feel bombarded with external sensory information.
Ido struggles with his faith as well. " I’m forced to doubt when I very much need God”s love and tenderness. I know that God is more than a wish-fulfiller. I understand that, but I wish now to have God’s love send me a cure…”
Another ongoing issue is wanting friendship, with Ido’s sad description of autism as “an isolating illness”. He provides some strategies on how to be a friend to someone with autism. For example:
“—Don’t patronize, even if the person seems ‘low functioning’. Who knows what is trapped inside?
--Be friendly and say ‘hi’ even if the autistic person is not animated in expression or doesn’t say ‘hi’ first
--Connect in the ways you can.”
Like a tour guide in a foreign land, Ido’s powerful words give us a window into a world most of us will never experience nor fully understand. This book should be recommended reading for anyone studying to be a special education teacher or therapist and for families and friends as well. We can all share in fulfilling Ido’s wish that “one day all non-verbal autistic people will have the opportunity to learn communication and show the world that lack of speech is not the same as lack of understanding.”
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