While my son’s autistic symptoms aren’t as socially crippling as those confronted by the author of this book, I can’t see many other books opening my eyes in the way this book has. At this point in time I’ve read probably 20 books about autism and only about 4 of those were actually written by autistic people. Ido Kedar, who was 15 years old at the time the book was published, is a shining example of 1) why we should be eager to hear what autistic people have to say and 2) why we need to believe in our children and never, not for a minute, accept that there are limits to their potential.
The backstory of the teenaged Ido Kedar is a masterpiece memoir waiting to be written (his mother would be the obvious choice to put pen to paper.) With little-to-no expressive language and limited ability to show how much of life he actually understood, Ido was considered severely mental impaired. Through persistent questioning and an on-going quest to understand her son, Ido’s mother uncovered a boy full of intelligence, understanding and emotion. A boy whose brain was at once beautiful and bold. A boy who had taught himself to read but who was handcuffed by dismissive therapists, disrespectful school administration and largely betrayed by his own body. Once he was given the tools to communicate, his world exploded. Alongside undeniable intelligence and good humor, years of resentment and anger came pouring out. These reflections of pain and pride are invaluable tools for non-autistic people to be able to empathize and really, truly, work to understand and support the autistic people in their lives.
The book is compiled of journals and other writings that Ido wrote from the ages of 12-15, written with the help of his mom and a letter board. Letter by letter he spelled out thoughts and feelings and, in doing so, proved nearly everyone wrong. He was smart. He was full of ideas. He had emotions and empathy. He could explain why he did things that confused and complicated things at school and in therapy.
You can read the five-star reviews all around the web. The quality of this book is undeniable and the inspiration within is untamed. There are a few things that I took away that really, deeply hit home:
- We hear all the time about how the talks of “a cure” for autism are misdirected and offensive to many of those living life on the spectrum. Ido counters that view point and is very blunt in his stance that if it could be cured, he would do it in a heartbeat. His mind and body connection has him trapped between an imaginative, intelligent mind and a body that is unwilling to cooperate or connect with his thoughts. He clearly wants out! While I still think it’s safe to steer clear of any cure conversations at this point, it’s really highlights the depth and breadth of those people on the autism spectrum.
- For years he was unable to communicate with those around him. He was forced to repeat preschool flashcards, answering silly questions and prompts to touch his nose. Everyone around him talked down to him, knowingly or not, and it left such a horrible taste in his mouth. That’s a challenge for all of us who deal with non-verbal or limited speaking individuals. Let’s not assume that they don’t understand. Talk to them like you’d talk to anyone else. Stay far clear of baby talk, don’t raise your voice when you’re talking AT them–just talk to them with respect and belief. This is a crucial reminder for me when I get comfortable in a perceived plateau in my son’s speech development.
- There are several stories in this book where Ido recalls that he felt school officials were actively looking for him to mess up. As my son grows older, dealing with school administration and other district politics is something that I fear. I’m not good with casual confrontation, it’s all or nothing for me. Reading Ido’s stories and the emotions tied to his memories provides me with fuel to always ensure my son has the representation he needs. Ideally, he is able stand up for himself and coordinate/communicate with teachers and staff to keep things in check at school. Of course we’ll be ready to jump in and support him as needed.
If you have an autistic child or if you teach autistic children, it’s imperative that you read this book. Draw in it, mark it up, color it yellow. This book could be required reading in any mental health intro course or debate fodder for grad students looking for professional futures. I just sent my mom a copy and requested that she share it with my sister when finished. My wife has been reading it when I leave it lying around. My father-in-law will eventually disappear with our copy as well.
Check out everything Ido at http://www.idoinautismland.com