Through Their Eyes: Sisters' Experiences Growing up with a Preverbal Sibling with Autism.

Background:  Being the sister of a child with Autism Spectrum Disorder (ASD) can be both a challenging and enriching experience. Siblings’ experiences can be complex and often difficult to capture using traditional methods, as they are often habitual and taken for granted. Many everyday activities are likely to be left unquestioned. Siblings in early adolescent years growing up with a sibling with ASD have been the subject of little previous research, especially in terms of sisters’ experiences.

Objectives: The main goal of the current study was to explore and describe relationships and environmental settings in the life of the typically developing (TD) sisters growing up with a preverbal sibling with ASD.

Methods: The current study takes a phenomenological approach supported by written diaries, photo logs and Photovoice groups along with background testing and 1-1 interviews. Sisters were actively involved by: i) collecting photo data by themselves, ii) determining the content of the data and categorising, and iii) analysing and interpreting the data that consists of their observations, experiences and reflection. This is the first study to use longitudinal Photo-voice methodology in order to give TD sibs an active participatory role, a rare methodological approach in the current field of research. Each interview was audio-recorded and transcribed following the guidelines of interpratative Phenomenological Analysis.

Results:  The average age of the sisters was 12.27 years old (SD=1.33) and the average age of the siblings with ASD was 11.6 years old (SD=1.62). Sister-driven content analysis identified eight major categories: birthday parties (22.06%), school assemblies (15%), siblings sharing time together (13.79%), lunch routines (13.79%), sleep routines (11.7%), sensory/self-stimulating behaviours (9.9%), supportive family members (8.14%) and hobbies/talents (4.15%). Four master themes emerged from our analysis: (i) the impact in education; (ii) the uncomfortable position of being different; (iii) need for respite; and (iv) acceptance and advocacy. Sisters’ photos are also revealing in terms of the things they chose not to photograph that might have been expected to feature such as their fathers and members of extended family.

Conclusions: Innovative strategies in both research and intervention may shift the balance between vulnerability and resilience. As experts of their own lived experience, sisters shed light on their day-to-day experiences. The findings highlighted the feelings, needs and thoughts the sisters experienced as siblings and carers of children with autism, but also as students and young females with limited networking and support in the community. A strong sense of love and pride of living with autism was expressed throughout the interviews, and this builds into an optimism that can be a crucial part of interventions that help to lift and further develop resilience, wellbeing and a life that is possible while planning for what remains to be difficult. Such information around contemporary and lifecycle issues in the life of siblings is central to the goal of designing proactive empowering interventions by clinicians, communities such as school and other agencies, and by policymakers in relation to both quality improvement and cost containment.