Age of Autism Book Review & Contest - I Am in Here
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By Kent Heckenlively, Esq.
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
My grandson has Autism and I would love to win a copy of this book for me and my daughter-in-law. Thank you
Posted by: Janet Wigley | June 06, 2012 at 11:47 PM
For parents that have a non-verbal child, there is someone in there and they listen to EVERYTHING you say! And through some amazing work, we are able to help them, we have found ways to ease the barriers that have prevented children from communicating, whether it is typing or speaking - it is an exciting time!
Posted by: Jackie de Vries | November 07, 2011 at 01:32 PM
I would love a copy of this book to share with my daughters father, who does not see the importance of making our non-verbal, ASD girl's needs a top priority...I need books like this to make him understand that she is alive, sees everything and desires the same respect as a normally developing child.
Thank you for this insight into the feelings of our children.
Posted by: Heather | November 07, 2011 at 06:15 AM
Being the mom of a 31 yr old nonverbal son, we have always known there is a lot more going on in his mind that he cannot express. It is still very frustrating for both of us. We are revisiting the typing, letter pointing, etc to see if it will become a meaningful method of communication for us. More books like this will inspire parents to keep persisting in attempts to establish written communications their loved ones.
Posted by: Meg Oberreuter | November 05, 2011 at 11:05 PM
This book sounds wonderful and I would love to read it.
Posted by: Barbara Bucknam | November 05, 2011 at 06:14 PM
Hi,
I also have Asperger's. I don't like the term "Aspie" because I'm a person first (think: people first language).
"I want to be heard and respected."
Thank you, Elizabeth Bonker, for this very important statement. The above statement applies to ALL people with an Autism Spectrum Disorder. It relates to our health agencies (CDC, FDA, pharmaceutical companies, and medical employees), our govermnemnt and legislature (Obama, his assistants, and Congress), parents, professionals, and people who have ASD.
I would love to win this book. It sounds highly interesting.
Thanks in advance for your consideration.
- Katie K.
Posted by: Katie Kagan | November 05, 2011 at 02:56 PM
Thank you for all of your posts past and present Kent, you keep a lot of light in the world, and your daughter will be in our prayers -- may the wound preventing her communication be healed up enough so that your deepest wish for her will happen sooner rather than later. After seeing your post, I ordered this book on amazon, and am excited to read it and share with interested family and friends. Thanks for the post about its release!
Posted by: jean | November 05, 2011 at 01:35 PM
I have a 6 yr old non verbal Autistic grandson named Spencer. I have read books by Temple Grandin, Jenny Mc Carthy and others.Also viewed the TV show that showed Soma using the prompt method. I wanted to send my grandson (who lives in MI) to Austin to meet Soma. Spencer now uses an ipad to communicate. It has lessened his frustration being unable to speak yet. We know he understands so much more .
I would love the book and would pass it on. Thank you A of A!!
Posted by: Barbara Jean Gomes Sikes | November 04, 2011 at 06:13 PM
I would like my 12yr old neurotypical daughter to read this book so she could better understand and be more tolerant of her brothers (ages 8&10) on the spectrum.
Posted by: Rob | November 04, 2011 at 01:09 PM
I have in mind that this would be the best gift to some parents of a son who is nonverbal and at times was violent, most likely due to frustration. The young man recently emerged as a gifted photographer. After 18 years, completely unable to communicate with the world and being put in an institution, he has learned to communicate typing one letter at a time. The parents were recently overheard saying "we didn't know anyone was in there". I'd like to give this book to them.
Posted by: Tami | November 04, 2011 at 12:38 PM
I have a son who is becoming verbal and he is definitely aware of everything around him! He wants so much to communicate with us! I would love a copy of this book!
Posted by: Gayle | November 04, 2011 at 11:47 AM
I would also enjoy the opportunity to read this book.
Posted by: Cody Jordan | November 04, 2011 at 10:49 AM
I would appreciate the opportunity to read this book.
Posted by: Susan O'Hale | November 04, 2011 at 10:04 AM
I would love to read this book! Sounds amazing!
Posted by: Jennifer | November 04, 2011 at 01:09 AM
I'm an Aspie, as is my son. I'm also a Buddhist. Can't wait to read the book.
Posted by: Doug Sparling | November 03, 2011 at 10:11 PM
would love this book!
Posted by: anon | November 03, 2011 at 10:05 PM
Thank you so much AofA for always reporting with integrity. This book is another example of what the autism community wants and needs to see. The book sounds wonderful and I cannot wait to read it. I absolutely devour all books with autism in them!
Posted by: Karen Ulrich | November 03, 2011 at 09:28 PM
Thanks for the excellent review. Please enter us in the contest. We can scarcely wait to read it now!!
Posted by: Lin Wessels | November 03, 2011 at 09:10 PM
I have a 13 year old daughter as well. I would love to read this book.
Posted by: Sonja Lopez | November 03, 2011 at 07:44 PM
I can think of so many people this book is a must read for.
Posted by: Kristen | November 03, 2011 at 06:02 PM
A copy of this book would be WONDERFUL. I read everything I can as my son who is 8 yrs.old has autism. He has come a long way with biomedical but I believe there's more inside of him that he so much wants to share with us all! Thank you for the opportunity of possibly receiving a copy of this book! Warrior Mommy :)
Posted by: Rachel S. | November 03, 2011 at 05:18 PM
I enjoy reading books about the struggles and triumphs of mothers and their child(ren) with autism. It helps us all know we aren't alone and that someone else understands. It's also helpful to read accounts that display true honesty. We love our children with autism and they love us back even if they can't tell us. We know!
Posted by: Cindy Puddephatt | November 03, 2011 at 02:23 PM
Sounds like an amazing book!
Posted by: Julia Wilson | November 03, 2011 at 12:55 PM
Looks like a wonderful book. We are still working to help our 10 year old non-verbal son express his inner thoughts. I know he's got so much to share and look forward to the day when I can know what is going inside his head.
Posted by: Jenn Pedersen | November 03, 2011 at 12:43 PM
This book sound amazing! I have worked with many children who have autism and are nonverbal but can see their individual determination of communicating with others. These children have so much to offer, including my 15 year old brother who is nonverbal as well.
Posted by: Caroline | November 03, 2011 at 10:09 AM
Looks like an awesome read. I would love to win a copy to help my family understand my 4 year old son who has autism. Thanks.
Posted by: Jeff Metevier | November 03, 2011 at 10:02 AM
Was this the girl that was on 20/20 a few months ago? That was really incredible. I have non verbal twins and would appreciate a narrative from this point of view from both the parent and child.
Posted by: CHS | November 03, 2011 at 09:43 AM
I would absolutely LOVE a copy of this book. My son is 9 and is just learning to facilitate on an Ipad. I am embarassed to say I have not always realized how incredibly intelligent my son is or how aware he has always been. It's been a very emotional process dealing with the guilt of not persuming his intelligence and clearly having conversations around him I should not have had and also feeling the Joy of discovering what an amazing little boy I have and starting to slowly get a peek at how he feels. I can imagine that this must be true for this family as well.
Posted by: Jill | November 03, 2011 at 09:09 AM
I would love a copy of this book. My son is 9 and nonverbal. I think I will pick up a copy for his teacher this x-mas also!
Posted by: Tracy McDermott | November 03, 2011 at 08:26 AM
This sounds like my son! At age 8, he is so aware but still so apraxic and frustrated and I long for the day that I can know his thoughts and feelings. I would love to read this book and find what more I can learn to help my son.
Posted by: Ronda | November 03, 2011 at 08:16 AM
This sounds like a fantastic book! I have a mostly non-verbal eight-year-old and I am always wondering just what is he thinking? I long for the day when he will wake up one morning and say "Hi Mommy - I love you!" I would really love to read about Elizabeth and how she sees and interprets life. Thanks for considering us.
Posted by: MelissaD | November 03, 2011 at 07:49 AM
I would love a copy of this book! I have a non verbal child, and I need to get a look inside of her to see how she must be feeling and thinking!
Posted by: Julie Leonardo | November 03, 2011 at 07:40 AM