What’s It like to Have a Sibling with Autism: Experiences of Typically Developing Sibling from New Delhi, 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 a peer support programme based on US based sibling support model Sibshops.

Objectives: The present paper seeks to highlight the feelings and emotions felt by the typically developing siblings of children with autism. It evaluates the impact of a peer support programme on the typical siblings' feelings and emotions towards the disabled sibling.

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 and discussion activities focussing on peer support. The programme was a safe place for siblings to share their feelings with other sibling participants. The typically developing siblings as well as their parents were interviewed at the beginning and at the end of the programme. In addition, activities of the peer-support programmes were designed to capture different emotions and feelings towards the typically developing siblings. These discussion activities were audio recorded and transcribed. Analysis was conducted to understand various emotions and feelings of typically developing siblings of individuals with autism.

Results: Findings indicate positive impact of the programme on various attributes of the typically developing sibling. Typically developing sibling as young as ten years of age reported feeling embarrassed, guilty, angry, worry towards their sibling. They also expressed various positive emotions such as pride and happy.

Conclusions: This is one of the few studies in a low resource country, 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 like India to address the needs of and the growing expectations from typically developing siblings of individuals with autism.