Saturday, April 16, 2016

Book Review: Learning to Kiss by Eve E. Megargel

The Triumphant Journey of a Nonverbal Autistic Child into an Adult With An Ability To Communicate That Knows No Bounds
Eve Megargel is a true hero. She is the author of the new memoir Learning to Kiss (Infinity, May 17, 2016) and the mother of a 25 year old man, Billy, who is nonverbal, has severe autism and suffers from a litany of medical issues. Learning to Kiss is a raw and honest account of Eve’s life with Billy as they struggle to identify successful modes of communication he can use in everyday life. 

Eve is dedicated to helping transform the image of people who have autism and nonverbal or limited verbal abilities. Her memoir is a testament to the fact that even if a person cannot communicate with spoken language, they still have the ability to share and learn and live a productive, happy life.

Eve and her husband, Matt, were told to institutionalize Billy when he was two. They refused and began a program, Voicecolors, that has helped him and other autistic individuals with limited verbal skills learn to express themselves and achieve meaningful social connections. When we consider those with limited speech as thinking, complex individuals, they can contribute to society in astonishing ways.

Billy first started to express himself through paintings and has grown into an amazing artist, talented gymnast, and yogi. Today, Billy’s work is in a number of
galleries and installed at Massachusetts General Hospital’s Lurie Center for Autism. Billy uses an electronic device to “speak.” He also uses other means of non-verbal communication that allow him to fully participate in his life.

One of the biggest issues autistic individuals and their parents or caregivers face is communicating with medical staff. Beginning in his teens, Billy often visited hospitals for testing and medical procedures. There, the staff prohibited Billy’s parents from accompanying him beyond the waiting room, despite their insistence. As a result, Billy became angry and ripped the IV out of his arm. He refused to cooperate simply because he didn’t understand what was going on and was not provided with a way to communicate that was right for him. Often, those who are nonverbal, or have low verbal ability are never given a chance to make their own decisions about healthcare, or anything else. Driven by these experiences, even among compassionate medical professionals, Eve created a questionnaire to be given to autistic patients during hospital admission, which has improved communication between medical staff and autistic patients

April is Autism Awareness Month and this year’s campaign is not only dedicated to awareness, but also to encourage the general public to accept and recognize the potential, instead of the deficits, of those on the spectrum.
About the Author
Eve Megargel is an author, educator, filmmaker, and pioneer in advocating that all individuals on the autism spectrum are independent communicators who are capable of self-expression and social relationships. Eve consults, collaborates, and engages on key autism issues and initiatives with several organizations, including Massachusetts General Hospital and Boston’s Jewish Family and Children’s Services. She is a member of the MGH Family Advisory Council and the Lurie Center Leadership Council. Eve received her master’s degree in Theology from Harvard University, and her bachelor’s degree from the University of North Carolina – Chapel Hill. She lives with her husband Matt and son Billy in Weston, Massachusetts.
VoiceColors Communication Resource Model
The Voice Colors® educational mission is to provide people on the autism spectrum opportunities to learn, develop and cultivate independent self expression grounded in social relationships. As a communication resource model, Voice Colors® provides parents, educators and service providers comprehensive information about how to establish, develop and refine communication systems or methods of instruction that will enhance the individual’s present and future social interactions and thus life experiences.
Purchase Learning to Kiss at
Visit Eve at, and check out VoiceColors on Twitter, Vimeo, and Facebook.
Our Thoughts
I was interested in this book from the get-go since we have a non-verbal child with autism; we've faced many of the same struggles as Billy although our son is not on the severe end of the spectrum.

Learning to Kiss is a collection of memories; both struggles and triumphs as Billy and his family navigate the uncharted world of autism and the complex medical issues that can come with it.  Not surprisingly, the modern medical field is still currently not well equipped to treat individuals with autism - not just because the medical issues can be so misunderstood, but because hospital staff often simply do not know how to handle the situation or communicate with the patient.  Many individuals like Billy have routines they must follow in order to get the task (whatever it may be) accomplished.  Hospitals have policies and don't always allow patients to break those policies depending on their individual needs. And then to add the non-verbal element on top of it all - without their communication systems, they have NO voice, a struggle we personally know all too well. 

People (sadly, some therapists and doctors included!) assume that because one cannot communicate verbally or with sign language, that one has nothing TO communicate, which is the biggest mistake of all! One of the memories that particularly stuck out at me was from the chapter "Wake Up Call" where the coordinator for special education says "Bill needs to learn to comply." and Eve answers it with "No, Billy needs to learn to communicate."  This, right here, has been an integral part of our struggle.  It was only finally understood when I fought for, and received, the label of Autism when he was 4; he was then given therapy services that would not have been offered until he was much older. He also has Down Syndrome, and I was told by the school they do not offer speech therapy services for Down Syndrome unless the child is not speaking by age 6 - 7, which frustrated me beyond belief!  I can only hope that their experience with our son has changed their mindset about childhood communication.

Back to the medical part - while our son does have health issues, thankfully they are manageable at home with strict diet and TNI (Targeted Nutrition Intervention) and he is under the care of a wonderful osteopath.  If we were to have a hospital visit, there is NO WAY we could let the medical staff separate us from our son because he doesn't yet have a reliable means of communication.  How could he possibly answer any questions or tell them anything?  If they ask what's wrong or what hurts, he cannot answer yet. With motor apraxia, he may not be able to perform any tasks they ask him to do.  Like Billy, our son is completely non-verbal, and with motor apraxia he is also mostly unable to sign.  We have been working with a speech device; it is still a work in progress and will be for quite some time yet - but he can sure say a whole lot more on his speech device than the few words he can sign.  Eve has created a questionnaire to be given to autistic individuals (and their caregivers) at hospitals so the medical staff can understand their specific needs.  I don't know if this questionnaire is widely available at hospitals & clinics across the US, but it SHOULD be!  We as patients and caregivers of patients, need to start asking for this questionnaire to get the ball rolling.

Eve also touches on that there are no "Autism specialists".  The medical conditions that can arise with autism can be so complex and so unique at the same time.  Doctors have yet to understand what behaviors are driven by what, and whether they are connected to a correctable medical issue or not. 

Learning to Kiss is a riveting read; a window into the both complex and vibrant life of Billy and well worth the read.