A Peer-Support Group for Typically Developing Siblings of Individuals with ASD in India

Background: Having a person with autism in the family, can be challenging for all members, including the typically developing siblings of the person with autism. In most communities, parents of children with similar conditions have the opportunities to interact while availing services for their child or by participating in parent support groups. However, it is very common for typically developing siblings to not get an opportunity to share their experiences with other siblings. They go through life feeling ‘alone’, often resenting their sibling with disability, and not fully understanding the implications of having a brother or a sister with autism. This is especially of great concern in low and middle income countries like India, where no state support is as yet available, and the unspoken cultural expectation is that the typical sibling will care for the autistic sibling once the parents are no more. To understand the experiences of typically developing siblings of individuals with autism, we conducted Awesome Sibling Meetups (ASM) a peer support programme based on US based sibling support model Sibshops.

Objectives: The study evaluates the impact of a peer support programme on a typical sibling’s knowledge of autism; behaviours towards the autistic sibling; their individual strengths and difficulties; quality of friendships and coping styles. It also evaluates the impact of the programme on the relationship between the two siblings.

Methods: Nine typically developing siblings participated in a peer-support programme at Action for Autism, the National Centre for Autism in India. Twelve sessions of 3-4 hours each were conducted over a period of four months. The sibling support model Sibshops was adapted for the Indian culture and was a mix of fun activities with primary focus on peer support. The programme was a safe place for siblings to share their feelings with other sibling participants. The typically developing siblings were assessed at the beginning and at the end of the programme. Additionally, parents were interviewed about relationship between the two siblings; typical sibling's strengths, difficulties and behaviours towards the autistic sibling; their parenting and coping styles.

Results: Findings from sibling measures indicate an increase in the knowledge of autism; decrease in anger/resentful feelings towards autistic siblings; and use of more positive coping styles. Parents reported decrease in negative behaviours towards the autistic siblings by the typically developing siblings. Results also indicate a decrease in typical siblings emotional, conduct, and peer problems; and an increase in their prosocial activities.

Conclusions: This is one of the few studies in a low resource country like India, which focusses on typically developing siblings of children with autism. Results support the need for such group interventions and controlled evaluation of sibling support groups to improve mental health and functioning of typically developing sibling. It has implications for running sibling support groups in low resource countries.