Understanding the Needs of Parents of Children with Autism Spectrum Disorders in India

Background: The family impact of bringing up a child with an autism spectrum disorder (ASD) is manifold. Common areas of concern identified in the Western literature are an increased demand on parents’ time to coordinate the child’s multiple services, reduced family participation in community activities, compromised personal time, increased financial hardship, reduced career flexibility, and increased stress over the child’s future. This literature also reveals that parenting a child with special needs often results in life course changes. While most of the research on the daily experiences of parents with autism was conducted in developed countries such as the United States, Sweden, Japan, and Australia, there is a need to understand the parents’ experiences in other countries such as India.

Objectives:

• To understand the impact of parenting a child diagnosed with autism spectrum disorder in India.
• To identify the type of changes that parents made to their routines in order to accommodate their child’s special needs
• To identify the supports that parents need in order to support bringing up their child with special needs.

Methods: Fifty four parents of children with ASD living in India answered an online survey made available through Qualtrics between April and October of 2010. The parents were recruited through an Indian parent support group. The survey comprised of 25 close and open ended questions.  Besides demographic information, the questions pertained to the parents’ experiences around the diagnosis of the child, the child’s special services, the family’s patterns of activities, and the family’s support system. The responses were analyzed quantitatively using frequency distribution and qualitatively using thematic analysis. This poster focuses on data related to the impact of parenting a child with ASD, changes in family activities and the supports needed to bring up their child with special needs.

Results: Personal well being, socialization, family life and finances were the most frequently impacted areas with 93% of the parents stating that parenting a child with special needs had an impact on their lives and 70% of the parents reporting that a change in family activities occurred as a result of having a child diagnosed with ASD. Social activities such as vacations, short term outings such as dining out, or attending family functions were the most common activities reported as reduced or modified. Modifications commonly listed included the need for elaborate planning and parent turn taking.  Parents expressed needs that were seldom met in India. These included short term and long term respite care facilities, improved understanding from the community at large, better education facilities, and better trained service providers for their children. 

Conclusions: While parents are the most important support system in the lives of all children, it is more so for children with autism spectrum disorders. It is therefore important to develop an in-depth understanding of factors that impact parenting children with ASD in all parts of the world.  Research like this one contributes to the development of programs that target the parents’ as well as the children’s needs.