Autism awareness through literature

DR RADICA MAHASE

EZEKIEL is a boy growing up in TT. For the most part he is like a "normal" boy – experiencing all the intricacies of life. The only difference is that Ezekiel was diagnosed with high-functioning autism, which puts him in his own little corner of the world. For while he might look "normal", he doesn’t always act like his peers, he deals with situations differently from them and often he needs a little extra guidance to be able to cope with everyday situations.

Ezekiel finds comfort in the pan. He loves to play the pan and he is very good at it. It gives him solace and helps him to cope in a society which is not always accommodating of his special needs. He is a talented pan player. The music is his world and he lives for the pan. While society and situations often confuse him, playing the pan helps him to cope with the confusion and gives him clarity of mind.

For the Love of Pan, a novel written by Prithiviraj Bahadursingh, tells of Ezekiel’s story. It also tells the stories of his father, mother and sister and how they cope with his special needs. Their stories reflect that of so many families in our country – families with children with various special needs, not just autism. It reflects that of parents and siblings struggling to cope with a diagnosis and then the trials and tribulations of helping sons/daughters/brothers and sisters to survive on a daily basis in a society that is not very understanding, much less accommodating.

Bahadursingh, a medical doctor specialising in community paediatrics, drew heavily on his knowledge of special needs as well as his interactions with those with special needs to produce this work. He has touched on various aspects of the life of a child with special needs such as specific diet; inability to communicate in a manner that society expects; the emotional issues parents have to deal with when their children are diagnosed and categorised as special needs; and everyday challenges faced by the individuals with special needs.

The book was launched on November 25 at Naparima Girls’ High School by Support Autism T&T, in the presence of Minister of Health Terrence Deyalsingh. In their welcome address, Vaani Seunath and Shelly Ann Mahadeo, executive members of the Siblings and Friends Network, the youth arm of Support Autism T&T, noted, “We wanted to host this book launch because For the Love of Pan is about a boy name Ezekiel and how he lives with high-functioning autism. It is about his life and how he copes on a daily basis. To some of us youth volunteers, this book gives us an insight into the lives of our brothers and sisters who have autism. For the rest of us it teaches us about the difficulties that someone with autism deals with in everyday situations. We believe that this is a book that can go a long way to raising awareness of autism in our country.”

At the same time, it is important to note that For the Love of Pan is the story of a high-functioning individual with autism, an individual who is talented on the pan. We have to be careful that this is not the impression that society gets of all individuals with autism.

As the name suggests, autism spectrum disorder is a spectrum, ranging from low to high-functioning. Some individuals on the spectrum are sensitive to noise and will not be able to listen to the pan much less play it. Also, there has been a tendency to project the idea that people with autism are geniuses and they excel at something – music, art, etc. While each individual might be excellent at certain things, those who are low-functioning on the spectrum struggle to do basic tasks themselves. Once we keep this in mind, we can appreciate Ezekiel’s story knowing that it is not representative of all children with autism.

The merit of the book lies in the fact that it seeks to draw attention to autism and special needs in general. For the Love of Pan represents a start to creating autism awareness at a wider level, through literature/story telling and the author must be commended for this. Maybe if there are more books like this in the future this will help to create a level of awareness, acceptance and inclusion that is much needed in our country.

Dr Radica Mahase is founder/dir
ector, Support Autism T&T