Ido in Autismland: Climbing Out of Autism’s Silent Prison Paperback – October 25, 2012

Ido Kedar is angry — and it’s awesome!You can’t blame him. For the first 12 years of his life, Ido Kedar was stuck in an uncooperative body, unable to communicate. Even now, as a teenager, his communication is limited to pointing to letters on a keyboard.But don’t assume his lack of speech equals a lack of intelligence. As Kedar points out:“The erroneous theory is this: to speak is to understand. Tell that to Stephen Hawking.”Ido lives in “autismland,” as he calls it, a scary place fraught with communication problems, sensory issues, and severe anxiety. Kedar’s book, Ido in Autismland: Climbing Out of Autism's Silent Prison, is a firsthand account of what it’s like trapped at the “low functioning” end of the autistic spectrum. This collection of essays — published in 2012 when Kedar was 16 years old — reveal the author’s beautiful mind, poet’s soul, and warrior heart.Kedar is a person — a mind, a soul — fighting to be heard. And, once he finds his voice, he doesn’t mince words.“The “experts” mostly never get it right. They assume we are some autistic, retarded stim-machine, not a trapped, thinking person who has a neurological illness. … Do I sound angry? Well, I am. It’s time autistic people told the experts that they have made mistakes.”Kedar breaks down many of autism’s odd behaviors. Why are autistic kids so attracted to water? “Because in the water I can feel my whole body,” Kedar explains. He also explains the motivation behind the repetitive pleasure/torture of self stimulatory behaviors.“In my Health class we are learning about drug abuse and alcoholism. I can’t help but see a similarity in autistic stims… Stims are the drug of the trapped.”Kedar is both baffled and troubled by the “flight impulse” that sometimes overcomes him. It’s a common autistic trait — in my son’s school they call it “elopement.” Sadly, it’s the same impulse that recently got autistic student Avonte Oquendo killed.“Traffic is visually stimulating. It may invite some kids to move toward it. I can’t explain that one, but I have felt the impulse to bolt suddenly… It’s not due to ignorance or idiocy. It is the impulses and too weak a body control to fight them off. It doesn’t matter why. We still need supervision to be safe.”When Kedar writes about the frustration of having a body that won’t respond to his will, he sounds like a philosopher.“I’m stuck like a stump and my brain is thinking of what it wants my body to do. It ends there. Thinking, not responding. In other words, what good is my free will if I am like a thinking man in a straight jacket?”Later in the same passage he shows courage beyond words.“I fight the temptation to despair because I really want to free myself. It’s my job to free my soul. Hopefully one day my body will be free too.”Ido writes with a wisdom and maturity well beyond his years.“I’m not a brave person. I am scared of being in front of cameras or interviewers. I have decided to speak out anyway. It’s not my goal to be well known. I like being anonymous, but I am determined to say what has to be said. It’s not always our choice if we are brave. Sometimes it’s important to do, even if you’re scared.”Like a Zen master who spends decades alone in contemplative silence, Kedar has achieved a kind of enlightenment. It’s no pity party for Kedar. He’s got himself together better than most.“I think a lot of it has to do with expectations. If you think life owes you something, you can’t appreciate what you have ... The way to appreciate your good fortune is to notice your blessings … I see that to hate your life dooms you to a wretched one, even if the life you have is hard. The truth is I don’t need to be normal to make my life meaningful. I need to have freedom to think, loving friends and family, and a recognition that no life is perfect. In spite of an illness I wish I didn’t have, I actually have it better than many people.”Kedar’s “secret to happiness” is “stopping self pity,” and he reveals the heart and soul of a true writer when he discusses the healing power of words.“As I write, I see what I should work on. I will continue to write my journey for myself because now I see that writing heals me.”Amen to that, Brother Ido!

Almost exactly a year ago, I wrote a review of "Carly's Voice: Breaking Through Autism", by Arthur and Carly Fleischmann, the first book that I had read which shares the thoughts of an individual with "low-functioning" autism, as opposed to "high-functioning" autism. While my son was initially diagnosed with "moderate level" autism, because these are all behavioral diagnoses rather than medical diagnoses resulting from evaluations which determine causes behind associated behaviors, after reading the literature and getting acquainted with the autism community it seemed natural to arrive at the conclusion that the ability to communicate verbally is one of the core aspects that separate the "high-functioning" individual from the rest of the spectrum. The typed correspondence by Carly that Arthur shares in his book, along with the typed answers that Carly provided in response to interview questions, was my first glimpse into non-verbal communication in the world of autism, but the subject of this review is a book almost entirely written by Ido, who is apparently also categorized as "low-functioning" (the 28-page introduction was written by his mother, Tracy).Of course, with the DSM-5 the definitions of these different categories are changing again, and so the pleading that Temple Grandin expresses in her latest book, "The Autistic Brain: Thinking Across the Spectrum" seems very appropriate to mention. "Unlike a diagnosis for strep throat, the diagnostic criterion for autism has changed with each new edition of the DSM. I warn parents, teachers, and therapists to avoid getting locked into the labels. They are not precise. I beg you, do not allow a child to become defined by a DSM label." In his book, Ido (pronounced "EE-doh") not only shatters these labels, but provides extended thoughts on a variety of subjects that relate to his journey, including detailed insight into his experiences with traditional professionals in the field, as well as hope to those who have individuals with autism in their lives.As I mentioned in my review of Arthur's book, it "is unique because it provides thoughts from a coming-of-age autistic girl, but the picture is made complete by a sharing of the joys and sorrows of a father who continually seeks to help one daughter while balancing the needs of siblings, as well as striving to obtain the best care and education in the midst of societal systems that still do not understand modern day autism." But this contrasts with Ido's book, which was written almost entirely by him via letter board and keyboard, and only supplemented by other individuals in the introduction and appendix. A high school student at the time that this book was published, the writings shared are from journal entries that he wrote between the ages of 12 and 15, labeled by the stages he was traversing each year: "the year of anger and sorrow" (age 12), "starting to let go of the past" (age 13), motivation (age 14), and "high school, for bad and good" (age 15). Since 50 reviews of his book have already been written here, but few contain direct quotes from the book, what follows is the sharing of some quotes to encourage the potential reader to pick up a copy, especially those who are at an early stage of understanding a loved one, or those who are at a late stage and have given up hope because of a theoretical lost "window of opportunity".From the introduction: "In the literature, those with Asperger's Syndrome have often described themselves as having a social deficit disorder that can make them feel like outsiders or aliens, even feeling like they are observing human behavior in punishment, much like a character, Data, from Star Trek. In contrast, Ido has profound insights into people. His social impairment is not caused by an inability to read or understand human behavior, but rather by his body's refusal to listen to his mind's instructions. This denies him the ability to talk, communicate through gesture or facial affect, and control his sensory and emotional responses. The result is certainly a social deficit, but the origin is not due to Ido being unable to understand human behavior. The more Ido explained to me how he perceived the world, the more it seemed to me that so many of the books I had read by authors with so-called 'high-functioning' forms of autism, had not given me the insights that I had hoped to gain into my son. Rather, their books had presented me with a fascinating glimpse into their neurological reality, which was not like his.""Every parent of an autistic child knows that once your child is diagnosed you have to become an expert very quickly. Since we got no guidance at all from the developmental pediatrician who diagnosed Ido, we immediately immersed ourselves in every resource we could find. We read, talked to people, tried to link ourselves with services and programs as fast as we could. Ido was two years and eight months by the time he was diagnosed - old by the urgency of remapping the brain standards prevalent in the literature and ABA. Hurry, hurry. The windows of opportunity are closing. Soon it will be too late. Hurry, find a program, begin reshaping those neural pathways. It may be too late already. Hurry, hurry, hurry!" Even if you are not interested in what Ido has to communicate in his book, the subsequent pages to these thoughts from his mother will likely open your eyes to not only the alternatives that await those who are responsible for loved ones with autism, but the pressure that comes packaged with accepted forms of treatment to pursue these methods without questioning.From a journal entry by Ido at age 12: "I understood everything but sometimes my feet interfere with my thoughts. It's like apraxia in my body. I want to say 'no'. My mouth says 'yes'. I want to go to my parents' room. My feet go to my room. This is a terrible problem because then people assume I don't understand basic information. It has happened so many times over the years. It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn't mastered because I had inaccurate pointing. I knew everything so easily. I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn't know 'book' or 'tree'. I did it over and over. It was the worst. The assumption that people don't understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous premise.""My ABA teachers would talk baby talk and tickle me to reward me. I cared that they see me as smart, so I tried, but I think it was pointless. I often felt that they couldn't see my potential, just the drills. I feel it's time autistic people finally said what it's like to be drilled in flashcards over and over when your hands don't move to your thoughts, or to have your teacher say in front of you that you can't count because your stupid hands refuse the right number you've counted in your head. I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, 'It's clear he has no number sense,' as if I couldn't understand or had no emotions either. When I think of these frustrating experiences I am grateful I am not in that situation anymore. But many of my friends still are. That's why I cry for them. Go and teach them to communicate. I wish that all non-verbal autistic people would learn to communicate too."From a journal entry later the following year: "One theory of autism is that we have no empathy. It often feels like the experts guess their insights. How do they really know? Is there a map to empathy in the brain that autistic people lack, or is it based on watching stims, or is it because Asperger's Syndrome is different than my version of autism? How do they know whether non-verbal people have empathy or not? If we lack communication, we can't tell people what we think. We can't write or gesture or show it on our faces or even control our impulses very well, so how do they know what's in our minds? They guess. It's a problem because these guesses impact the lives of thousands of kids and their families. That is power, I tell you. I have been told that non-verbal autistic people like me, who can communicate, have a different sort of autism. The result is that these experts are unable to see that the same potential to communicate exists in many other autistic kids. This is tragic. It leaves thousands of kids stuck in boredom, isolation, and sorrow. Is that fair?"At age 13: "Moses amazed the world in his challenges. Who was he, this speech impaired shepherd, to challenge Pharaoh, thought to be an embodiment of the gods at that time? Moses assumed he was right when he insisted on freedom because God insisted it was right. Pharaoh assumed he was right when he insisted on slavery because no one dared challenge Pharaoh. That is, until Moses, the reluctant spokesman, stuttered and Aaron repeated the command to let the slaves be freed. Moses taught the world that God rejects slavery. No matter how this idea has been ignored, no one can honestly argue after the Exodus, that God approves of enslaving others. This was the first time that humanity saw a mass liberation movement and it has inspired people for thousands of years to aspire to be free.""There is also a lesson in mutual support. Moses had a helper, and this, I think, shows that we should not take too much on alone. Aaron and Moses are a team. I am sure Aaron needed Moses as much as Moses needed Aaron, and God relied on both of them to convey his instructions of liberation. The message of Moses is that one leader doing what is right, with the right support, can change a terrible situation to one of hope and promise. I get inspiration from Moses. I faced a terrible situation without hope in my childhood. But, despite my inability to speak, I have reluctantly seen that if I don't say the truth it may be years before change occurs. So, I face my pharaohs - autism experts - to see if we can't find a way to liberate autistic people from the solitude they face."