I Might Be You: An Exploration of Autism and Connection
Did you hear the severe autism alert sirens wailing? Did that storm luckily miss you and yours? Not us. Our family took a direct hit. I Might Be…You is a fresh look at the damage and emerging sun as told by an adult with autism who “is disguised as a poor thinker” but has much to say yet does not speak and a therapist who helps rebuild. With experience, wit, warmth, and wisdom these two collaborate to rethink roles, expectations, treatment strategies, education, meaning and the healing truth about connection.
It is a must read for overwhelmed parents, teachers and practitioners needing inspiration, and those with ASD seeking purpose as hope is found.
As you enjoy this highly entertaining, thought provoking, and deeply emotional account of life with autism, we invite you to discover who you might be and the unique contributions that may be yours to make.
“This book changed me.” Jess, A Diary of a Mom blog
I cannot recommend this book strongly enough. Please don’t be fooled — it is not just a book for those whose lives are touched directly by autism. No, it’s a book for anyone who has ever sought connection — with themselves, with their fellow human beings, with the world around them, with God.
And somehow, even as it reads like a manual for how to achieve those connections, it manages to be funny as hell. Barb invites you to laugh with her — she dares you to laugh at yourself as she does herself. Her humor was, for me, the most delicious surprise of all. It is not remotely an exaggeration to say that this book has changed me. It has made me a better mother, a better advocate for my autistic daughter, and, above all, a better person. I want to be Barb when I grow up. Read the book. It’s a gift.
After all, “without you, I would not be me.” (Native American Proverb)
Note from Barb on how this book was written:
Our style editor asked us to clarify upfront exactly how this book was written, to explain “to the full satisfaction of the reader that these are indeed her words.” I am happy to oblige.
This book took 10 years to write.
That time frame may best be appreciated by understanding the arduously slow progress involved. I communicate through facilitated communication (fc), which is a form of augmentative and alternative communication seen as a basic right by The Autism National Committee (AutCom), The Association for the Severely Handicapped (TASH) now The Association for Persons with Severe Handicaps, and me. FC users are supported by individuals called facilitators who provide physical support to help stabilize movement, reduce impulsive pointing and perseverations (repetition of the same motor response) and increase movement initiation.
The goal of facilitated communication (supported typing) is to progress toward independent typing. I work hard every day with several facilitators to accomplish that goal and now type with just one hand touching my back for support to help me initiate movement and overcome my apraxia. The National Institute of Health defines apraxia (called dyspraxia if mild) as a neurological disorder characterized by loss of the ability to execute or carry out learned movements despite having the desire and ability to perform them. This includes talking and typing. I also struggle with ataxia, which is characterized by imbalance, unsteady walk and tendency to stumble, problems with fine motor movements, and difficulty positioning in space. I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time. Please try harder later.” These vexations may prevent me from ever being a good driver, a great drunk driver sure, but never good. I am however determined to be the best writer I can be and this book is my Rubicon.
Our website features a library of videos and photos showing my gradual progression from hand over hand support to one hand touching my back. I invite you to view my technique at: http://www.muleandmuseproductions.com. For example, on the video, “First FC Day with Jeremy” it shows him supporting my wrist while we type common knowledge. Typing stuff we both know and expect is a great way to start practicing FC with someone new to get both people comfortable with the feel. If memory serves, and mine does very well and on my own I might add, the first day we typed the names of the seven dwarfs. The old joke, “a clear conscience is merely the result of a bad memory” fits me as badly as most professions other than being a writer as my conscience and memory are crystal clear and now both on display. From there, Jeremy weaned his support each day and we moved on to me typing information known only to me with him standing behind me and touching my back with his finger tips as seen on the clip “Solo Typing with Jeremy 2012”.
Readers are also encouraged to learn the process from others like me from a variety of documentaries and films such as: 1. “Here We Are World: A Conversation Among Friends”, 2. “Autism is a World”, 3. “My Classic Life As an Artist: A Portrait of Larry Bissonnette, 4. “In My Language” , 5. “Kayla’s Voice”, 6. “Inside the Edge: A Journey to Using Speech Through Typing”, 7. “Including Samuel”, 8. “Educating Peter”, 9. “Regular Lives”, and 10. “Wretches and Jabberers”.
Additional understanding of facilitated communication from researchers and practitioners can be found at Institute of Communication and Inclusion at Syracuse University where I and many others learned the standards for practice and have achieved the goal of facilitation, “namely independent typing and/or a combination of speaking and typing”. The web site for the Institute of Communication and Inclusion at Syracuse University provides empirical data supporting the validity of the way I communicate.
When I finally realized that it is easier to change me rather than everyone else, I put learning how to type on my own as priority number one. That focus resulted in hundreds of hours of practice and real improvement.
The first part of this book was written by me using hand over hand facilitated communication. A video of this level of support can also be seen on our web site’s video library in the clip titled, “Hand Over Hand Support”. The chapters in the second part of this book were written by me using progressively less support as seen in the photograph below of me typing with elbow support from Dr. Dreke. Lois typed her chapters by herself, as she is less interesting.
November 29, 2012 Update. This is how I type now. Thank you for your patience and understanding. Grateful and independent, B
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Have a question that you’d LOVE to ask Barb?
Loud Mute Radio is for the people by the people, so it is important we hear from you. If you have a comment or question, please call and and record it. We are happy to help you be heard and may put your voice on the show. (And not in the sassy, tricky way we do our non-consensual celebrity guests – we won’t clip your comment and use it out of context - promise… ok, unless you are very famous and we think its funny…other restrictions may apply) The number is (442) BARB-989
Of course, if you are non-normative communicator without access to a friendly mule, you can always email us at email@example.com