It's a rare autism book which wins praise from figures as diverse as Tom Brokaw, Jenny McCarthy, Temple Grandin, and Suzanne Wright, co-founder of Autism Speaks.
But that's exactly what writers Virginia Breen and her daughter, Elizabeth Bonker, a thirteen-year-old girl with autism have accomplished with their book, I Am in Here.
For those of us with a child who is still non-verbal despite all of our best efforts this book is akin to a glass of cool, refreshing water in the midst of a burning desert. Elizabeth cannot speak, but has learned how to communicate using the rapid prompting method created by Soma Mukhopadhyay. Elizabeth has also learned to use the computer and often types out short poems to communicate how she's feeling. For parents who wonder, and hope that something beautiful exists within our mute children, her words are nothing less than an answered prayer.
In the poem "Me" which opens up the second chapter she writes of her frustration that she goes to every extreme to try and express her need to talk, and how she wants people to know she is conscious and aware, even though she can't speak. In the explanation which accompanies her poem she says, "I wrote "Me" to let people know that even though I don't speak, I feel and understand the world around me. I want to be heard and respected. I want that for everyone, especially for people like me."
A doctor once asked me what I wanted for my daughter. A number of possibilities sprang to mind. I could have said I wanted her to be potty-trained, ride a bike, have a meal in a restaurant, but instead my fondest wish was for something else. "Someday I want to have a conversation with my daughter," was my reply.
Until that day arrives, Elizabeth and Virginia's book lets me imagine that conversation.
As much as we have Elizabeth's voice in the book, we also get to know her mother, Virginia, a venture capitalist who invests in high tech companies, and studied computer science at Harvard, business at Columbia, and philosophy in Singapore. The result is a book which is literate, clear-sighted, and also, deeply spiritual. The lessons of this book are bigger than autism.
I suggest this as THE book to give to friends and family for the holidays to better understand our struggle. While many may differ about what causes autism, there should be unanimity that what we're fighting for is to unlock the voices of so many like Elizabeth who are there, but cannot speak. There should be no agenda other than figuring out this question, no matter where those answers lead.
While there are many wonderful passages in the book from different individuals and faith traditions regarding autism, life, and the struggle to find meaning in our world, there was one in particular which stood out for me. It was the Four Noble Truths of Buddhism, which are said to embody the essence of Buddhism. The Four Noble Truths are: (1) the truth of suffering; (2) the truth of the cause of suffering, (3) the truth of the end of suffering, and (4) the truth of the path which leads to the end of suffering.
When Elizabeth started working with Soma on the rapid prompting technique and asked Elizabeth to write a word that started with "A", Elizabeth wrote the word "agony". Soma asked Elizabeth what caused her agony and Elizabeth wrote back, "I can't talk. I am stressed. I have no way to say I am greatly bored with my day."
Prior to Elizabeth learning to communicate with the rapid prompting technique her I. Q. was assessed as being 69, which is mildly retarded. After learning to communicate she was retested. Her I. Q. was 164, which puts her in the genius range.
I Am in Here shows us the truth of what is inside one girl with autism, the struggles she goes through on a daily basis, and what may be inside so many children who have no voice. In the autism fight I always think there are two competing forces which our community must balance if we are to ever solve this problem.
The first struggle is to speak with honesty about what we have seen, namely that the problems with so many of our children began after a vaccination. The authors are very clear on that question. It is difficult for many to accept our message.
The second struggle is in many ways an even greater challenge. It's about how to communicate in a way which allows people to hear our message. As a community we struggle not just with the problems of our children, but against a medical community which actively discourages us from pursuing the truth of what our own eyes have seen. I can think of no comparable situation in history.
I reach for comparisons like our own Revolution or the civil rights movement, but all of those are so different. We are renegades in the House of America, but we still live in the same neighborhoods, go to the same schools, and work at the same jobs. We are simply made invisible.
And yet our voice, like that of Elizabeth, must be heard if we are ever to solve this problem. This book has received praise from figures as diverse as Tom Brokaw, Jenny McCarthy, Temple Grandin, and Suzanne Wright, the co-founder of Autism Speaks. I hope I Am in Here can be the spark which starts the conversation America has long deserved about autism.
It will be a debate conducted with the loving kindness and humility which infuses this book, but it will also shade no truths about the causes, the reality, and what may some day be the cure for autism.
Kent Heckenlively is a Contributing Editor to Age of Autism