“I Am Different Because I Have ASD Sibling”: A Qualitative Study on Siblings of ASD Child in Lithuania

Background:

The relationship among the siblings is the longest lasting relationship among humans (Beyer, 2009). Sibling studies are extensively researched area (Beyer, 2009). However, there is still less known about the relationship among siblings when one of them has ASD and the existing findings are mixed (Benderix & Sivberg, 2007; Mascha & Boucher, 2006; Orsmond & Seltzer, 2007).

Objectives:

This was a novel study that aimed to look at the siblings’ experiences in growing up with ASD sibling in Lithuania. Especially, to capture the different types of experiences: risk and prevention factors through the eyes to the sibling. We also considered age, gender and ASD severity which are usually not considered in previous studies.

Methods:

We have used qualitative methods to access more in-depth experiences of the participant’s. We used semi-structured interviews. Total of 15 siblings agreed to participate, age range from 11-24 years, from 13 families. The data was than transcribed and analysed using NVIVO 12 software. We applied grounded theory analytic framework to understand the findings.

Results:

Lithuanian siblings reported stress due to responsibilities given to them. Participants were obliged to take care of their ASD sibling despite the birth order (being younger sibling) or age difference (being 10 years apart). They have shared about challenges of having ASD sibling such as behavioural problems of ASD, feeling “secondary child”, experiences of stigma and embarrassment of their ASD sibling. This was reported by siblings who had brother/sister with severe symptoms of ASD. Despite of all the difficulties siblings reflected on positive aspects like being more understanding and able to cope better in challenging situations compared to their friends.

Conclusions:

The current study highlighted the impact of ASD on sibling’s relationships. In addition, it informed about existing family dynamics from the sibling’s point of view. While it is not possible to mediate sibling’s age, gender or severity of ASD, there are strategies that can be employed to facilitate more positive relationships between sibling participants and ASD sibling and family as a whole.