SLP Book Club: Carly's Voice: Breaking Through Autism

Our March/April online SLP book club selection was [affiliate link] Carly's Voice: Breaking Through Autism by Arthur Fleischmann with Carly Fleischmann. 

This non-fiction book is a father's account of raising his daughter Carly who is diagnosed with Autism Spectrum Disorder, along with contributions from Carly.

You know how people talk behind people's back? With me they talk in front of my back.  -Carly

Carly was diagnosed with "severe autism" at the age of two.  She is non-verbal, struggles with obsessive-compulsive disorder, and is a handful behaviorally.  Based on the evaluations and observations of many professionals, Carly's behaviors and inability to communicate led them to the conclusion that she was also significantly cognitively impaired.  An assumption that held until she was in her tweens/teens and finally able to communicate sufficiently (and master control of her body "enough") to prove otherwise.  She sleeps very little and is in constant motion.  Arthur Fleischmann offers an open and honest (and sometimes sarcastic) look inside raising a child severely impacted by autism.  Carly offers insights that only she can provide.

In a world of silence, communication is everywhere. You just have to know how to look.  -Carly

If you read through reviews on Amazon, you will see some "critiques" that the Fleischmann's do not represent the 'average' family.  Indeed, they seem to have had the financial means to provide more supports and therapies for Carly than the 'average' family can pull together for a child with significant disabilities.  I recognize that this can be a bitter pill to swallow for a parent going through a similar journey with their own child, but not having access to the perceived level of funds the Fleischmann's have spent over the years.  Coupled with the fact that there is no straight-forward recipe of do this intervention --> get this result, navigating the world of autism can be frustrating, confusing, and heart-wrenching.  I found the book eye-opening regarding the level of care and money that are truly needed to help a child like Carly not only survive, but to also reach their full potential (whatever that might be).  Having worked with many autistic individuals over the years, I knew - but really didn't know.  It is heartbreaking to read about the choices Arthur and his wife were forced to make to balance the needs of Carly with those of their other two children, themselves, and for the family as a whole.  It was shocking to read the lengths they had to go to in order to provide an education for their daughter.  A reminder of just how individualized needs can be, and how unprepared systems are to make the needed accommodations.  I was also struck by how amazingly lucky Carly and her parents were to have the involvement of her dedicated and long-time speech-language pathologist, Barb, and direct care provider, Howard. 

I think the part of the book that will stay with me the most, is Carly's own insights regarding her needs, her behaviors, how she thinks, etc.  I was really struck by the difference between what we, being neurotypical, observe and assume versus what might actually be going on from the perspective of an autistic individual.  For example, Carly eventually shared with her parents that when she is slapping herself, it is often in an effort to prevent herself from doing something else she knows she should not do.  Or that it is a constant battle and takes great effort to control her body enough to sit still for any length of time.  It is as if she is two different beings contained within the same physical body - it was incredible to hear and realize how different her mind is from what her body is compelled to do.  Or that the sensation of touching the keys on a keyboard to type was difficult to overcome for more than short/brief messages.  Or how she takes EVERYTHING in and processes it over time and remembers the information once she has made sense of it.

I found this book to be an interesting read, and didn't want to put it down.  I was drawn in by the story as it helped me to re-examine my assumptions and approach as a therapist working with children diagnosed with autism.  While her SLP, Barb, was not the focus of the book, I was inspired by her.  It also helped me appreciate just a bit more some of what the parents of the children I work with might be going through.  I highly recommend it.

Disclosure: I purchased the book and received no compensation for this post.  The opinions are all mine.  This post contains affiliate links for your convenience.