Assessment of Knowledge and Attitudes Regarding Autism and Family Support Among Autism Society West Bengal Training Program Participants

Introduction

Background: Literature Review

Autism, like many mental disorders, carries with it a stigma across cultures and generations. In India, the stigma associated with autism can be especially heavy because the individual with the disorder is not the only one who carries the burden of diagnosis – the family does, too. This can be understood by considering that there is a great emphasis on social relationships in India, particularly among family members. Accordingly, there is pressure to adhere to social norms and expectations of behavior. While the immediate family is most heavily impacted by an autism diagnosis, close relatives such as the child’s grandparents, aunts, and uncles may also become distressed as they are often deeply involved in the child’s care. These family members can play an important role in the life of a child with autism in India because they are engrained in the Indian conceptualization of the family. Parents, children, grandparents, aunts, and uncles often live under the same roof in this “joint family” fixture or, at a minimum, live close to one another and regularly keep in touch.

Even in the immediate family, having a child with autism can have a devastating impact. A number of studies report increased levels of stress, depression, and anxiety among parents of children with an autism spectrum disorder. This stress may arise from having very little respite from the time and energy required to raise a child with autism. It may also be a result of anticipating the reactions of other family members. Living with a child with autism also sometimes prompts members of the immediate family to change roles and plans. One study by Daley and Sigman (2002) suggests that many Indian families choose to have another child if their first has autism so that the elder child can have a caretaker later in life. This behavior is likely applicable even today, eleven years after the publication of this study. In some Indian communities, a physically or developmentally delayed child is considered a product of bad karma. Understanding the cultural factors influencing parents’ knowledge, attitudes, and behaviors regarding autism is important because these views and actions can dictate what course of treatment or help parents of children with autism take.

Background: Our Project

This project was made possible by funding from the Service Opportunities in Leadership (SOL) program at Duke University. It was conducted in conjunction with Autism Society West Bengal (ASWB), a non-profit organization in Kolkata, India that seeks to spread awareness about autism, advocate for the rights of individuals with autism and their families, and support these individuals and families by providing various services such as consultations and training programs.

We came across ASWB after seeking organizations that have a focus on mental health services. Because both of us have an interest in mental health and, specifically, in autism, our research interests were particularly relevant to ASWB. We have both previously worked with programs that serve children with autism and desired to learn more about the condition and its impact on those most closely affected by it. Thus, we worked closely with ASWB to design a research project aimed to explore a topic of mutual interest.

ASWB has expressed interest in better understanding the attitudes toward autism and the level of support for children with the condition across both the immediate and extended families of these children. Based on these interests, we developed the following research goals:

1. Evaluate the impact of ASWB’s three-month parent training program, Autism Spectrum Intervention Research, Education, and Support (ASPIRES), on its participants’ understanding of autism and management of their child’s condition.
2. Assess the knowledge and management behaviors regarding autism among the parents and grandparents of children served by ASWB and their conceptions of their family support.

We worked with ASWB over a period of ten weeks from June to August 2013 to pursue these research goals.