Book looks at autism in TT

WITH heightened awareness this April, Autism Awareness Month, Dr Radica Mahase, founder/director of Support Autism T&T and a columnist with Newsday, has decided to publish a book of autism columns at the end of this month.

She said of the book, Autism in Trinidad and Tobago – A Collection of Articles, “I wanted to launch this book in April, when autism is spoken of more, and when it is a more prominent topic in the media.”

As for the impact of the book on the society and stakeholders, Mahase said for the past four years she has been advocating for a national policy and action plan on autism.

“This book is a step towards achieving that, as it provides information about those with autism that can be used to guide policies.”

The collection highlights various issues faced by those with autism, through stories of individuals who struggle on a daily basis. Mahase said the situations are all real (though names have been changed) and the experiences are definitely the reality of what life is like for someone with autism in TT.

“This book helps us to understand this; once we understand then we will know what changes are necessary.”

Mahase, a senior lecturer in history at the College of Science, Technology and Applied Arts (COSTAATT), said her interest in autism became real after noticing things weren't right with her three-year-old nephew, and subsequently finding out what she had suspected. He was autistic.

"We spent almost four years
before we could get him diagnosed, then more years just trying to find a school, to get therapists, etc. It was very difficult for us, very depressing, and I decided that I will start an organisation that can help parents (through information) and more importantly, that will create opportunities for my nephew and others with autism."

The challenges of raising a child with autism or any other special needs are everyday ones, she said.

"Autism is a lifelong condition, and every year the number of individuals diagnosed with autism is increasing.

"However, there are no correlating increases in services to cater to the needs of those with autism. The articles in this book focus on education, social services, health, etc, and all of these areas can benefit from the information provided in these articles.

"Additionally, on a more general level, the articles will help to create awareness and set the stage for acceptance and inclusion.”

Mahase says the book is for anyone who needs to be educated about autism and special needs in general.

She believes education is the key to change, and the whole purpose of the book is to educate every and anyone about the reality of life for those with autism in TT, with the aim of creating positive changes. It is written in a simple, clean, precise manner that is pitched for secondary-school level and up so that the general population can benefit from it.

About misconceptions people here have about autism she said autism is an "invisible disability": that is, many people with autism do not "look like something is wrong with them." So people who don't know about autism think that the child is just "harden" and lacks discipline or is "dotish" and "duncey head." Also, many people think people with autism cannot learn and are worthless to society.

She said ideally a paediatrician who specialises in development should diagnose a case.

"We have three of these in TT, one based in San Fernando General Hospital, where the waiting period for an appointment is five to six months; and two based in Mt Hope, where the waiting period for an appointment is an average of 12-18 months."

The public healthcare system is also lacking immensely when it comes to treating those with autism, she said.

"Not only is the waiting period for diagnosis long, speech and development therapies are not available within the public healthcare system. There are no counselling services for parents/siblings; many healthcare workers, especially those in the health centres, cannot recognise the early signs, so that autism goes undetected."

So Mahase said a great deal of good can be got from the book.

“What I first became interested in was writing about our special children, because I felt that society just swept them under the carpet and they were more or less invisible. This is just wrong and unfair to them. They are special in their own way, and they deserve to have a space in our society and an equal place in our country.

"Thus writing about them is my way of showing the issues that this group is faced with on a daily basis, to agitate for equal treatment for them – but, most importantly, to show that they are unique and deserve what every child is supposed to be afforded in our country – equal treatment and opportunities to lead fulfilling lives.”

The book is partially funded by the ASH-NAD Foundation, founded by Nadeira Khan and her husband Ashmead Ali. Mahase said: "They have a special interest in autism and they are always willing to assist those with special needs and their families. They have assisted with many activities of Support Autism T&T over the past few years and very willingly came forward to assist with the publication of this book."

This is Mahase's first publication on autism and the one she is most pleased with. All her other publications are on history, Caribbean History for CSEC (with Kevin Baldeosingh), various edited books and numerous articles and book chapters.

Her book on autism took six months to put together.

"I always knew that I will publish a collection of my articles one day because of the wonderful response I get when they appear in Newsday. Once I decided that I wanted to share these articles, it was not difficult to put them together, write an introduction, etc. My academic training helped to make it a smooth process, as well as the fact that autism is very close to my heart."

Anyone interested in buying the book can contact Support Autism T&T on Facebook and Instagram, e-mail ttautismnetwork@gmail.com or 791-1320.

It will also be available at any Support T&T events, which will be advertised on social media, and a listing of the bookstores where it will be available.