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Between the pages of the spectrum

Autism is interpreted and understood in so many ways, some backed by evidence, and some by popular belief.

Published: 03rd August 2021 06:50 AM  |   Last Updated: 03rd August 2021 06:50 AM   |  A+A-

Express News Service

CHENNAI: ‘Our country has one of the largest populations of autistic people in the world… One in 100 children in India under the age of 10 has autism, which adds up to a non-inconsiderable number of 14 million (and growing) Indian citizens on the spectrum. For a population this size, barring a smattering of handbooks, manuals and other resources, there is little material on autism written from an Indian perspective’, writes Merry Barua, founder and direction of Action for Autism (AFA), India, in her powerful foreword for A World of Difference:

The Ultimate Autism Handbook for Mindful Parenting, setting the tone for the book’s narrative. The latest addition to the body of Indian publications (albeit slim) on autism, penned by Board Certified Behaviour Analysts (BCBA) Gita Srikanth and Swati Narayan, takes the form of a handbook and endeavours to guide parents about the spectrum, its many faces, forms and function. “Parents are the change-makers, they are the first and best interventionists and we believe that they are equal partners in providing therapy for the child. Our approach believes in empowering parents to make a world of difference!” say the duo. Excerpts follow:
 
The larger vision of the book is to bridge speculations from facts about autism. How do you think the spectrum disorder has so far been understood?
The vision of the book has been to present autism spectrum disorder factually. Autism is interpreted and understood in so many ways, some backed by evidence, and some by popular belief. When a child receives a diagnosis of autism, families naturally go through the challenges of accepting that their child may be different. In our experience, mothers often blame themselves for possibly causing the autism by letting the child watch TV, or going back to work, leaving the child with a caregiver. We do want families to know that as we understand autism now, a child is born with it and it becomes evident only around 18 months of age. Autism is life-long and cannot be cured or set right in a few years as is believed sometimes. The sooner the family accepts that, the faster they move towards acceptance. Not all children with autism have savant skills, as is popularly believed. There is no standard intervention mix that every child will benefit from. Every child with autism is different and their needs have to be taken into account in deciding on interventions.
 
How did you tap on your observations and experiences to create this handbook?
Every family that we interacted with, in the past 20 years, has been a learning experience. Everyone comes in with their perception, attitude and understanding of the child, with their expectations for their child and with their priorities for interventions. But, over the years, we have seen common threads in every conversation which made us realise that beneath these differences, the concerns and questions that families have for their children are similar. There is only so much a parent can take in at one go and then there are questions that keep cropping up as they interact with the child. This book attempts to answer all the questions and worries that a family may have when they have a child with autism.
 
What were the challenges involved during the process?
Through the case studies and our interactions with families, we wanted to weave in the narrative of the need for quality, evidence-based services. The challenge lay in simplifying the basic behavioural principles, so families are not overwhelmed by definitions and technical terms. The challenge lay in demonstrating that they can start applying the principles with their children for teaching and behaviour management. Co-authoring simplified the process of bringing everything we wanted to convey to the table and being able to pick what was relevant and important in the narrative. It helps that we work together and share a perspective.
 
Why do you think there’s been a dearth of quality literature on autism? 
Very little has been documented and even less in the realm of scientific procedures for autism intervention. Applied Behavior Analysis itself was only available less than 20 years ago and largely limited to some metros. We believe that this is a space with a lot of potential, and we need professionals to actively contribute to this knowledge base.



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