In their own words, in their own photos: Adolescent females’ siblinghood experiences, needs and perspectives growing up with a preverbal autistic brother or sister

Abstract

Thus far very little research has focused on siblings in early adolescent years growing up with an autistic sibling. Adopting a community-based participatory research (CBPR) approach, 11 typically developing sisters actively collaborated in the study to collect and analyse data as well as disseminate their experiences, needs and perspectives in their local communities. This is the first study to use a modified Photovoice methodology which provided typically developing sisters an active participatory role. The results highlighted the feelings, needs and thoughts the sisters expressed in their role as siblings, friends, but also as students and citizens with a passion for advocacy, and limited support in the community due to unhelpful attitudes of members of their community towards autism. The findings indicated that the current method used can successfully cogenerate research findings with family members by ensuring pathways for engaging local community. This is crucial in shifting the balance between vulnerability and resilience in families raising an autistic child. Furthermore, when knowledge about the lived experience is drawn directly from the perspective of the actual people (siblings) involved in the phenomenon (siblinghood and autism), a more appropriate, responsive and need-fulfilling strategy of supportive and proactive support systems can be initiated.

A systematic review of the experience of being a sibling of a child with an autism spectrum disorder

“…Most studies used interviews to collect data ( Angell et al, 2012 ; Benderix & Sivberg, 2007 ; Chan & Goh, 2014 ; Corsano et al, 2017 ; Costa & da Silva Pereira, 2019 ; Cridland et al, 2016 ; Gorjy et al, 2017 ; Mascha & Boucher, 2006 ; Pavlopoulou & Dimitriou, 2019 ; Petalas et al, 2009 , 2012 ; Tsai et al, 2018 and Ward et al, 2016 ). The remaining two studies asked participants to take photos and/or videos, combined with interviews and focus groups ( Hwang & Charnley, 2010 ; Pavlopoulou & Dimitriou, 2020 ).…”

“…TD sibling’s spoke about the positive impact their sibling with ASD has had on their own personal attributes, such as increased empathy and understanding; developed ability to cope, compromise and feel good about helping out (e.g. Angell et al, 2012 ; Benderix & Sivberg, 2007 ; Chan & Goh, 2014 ; Corsano et al, 2017 ; Cridland et al, 2016 ; Gorjy et al, 2017 ; Mascha & Boucher, 2006 ; Pavlopoulou & Dimitriou, 2019 , 2020 ; Petalas et al, 2012 ; Ward et al, 2016 ). In contrast, many siblings spoke of responsibilities that may be above what would be expected of their developmental age and stage.…”

“…Many also expressed concerns about their own and their sibling with ASD’s future (e.g. Benderix & Sivberg, 2007 ; Corsano et al, 2017 ; Mascha & Boucher, 2006 ; Pavlopoulou & Dimitriou, 2020 ; Petalas et al, 2012 ; Tsai et al, 2018 ). However, some TD siblings reported that while the responsibilities placed on them increased as they grew older, their understanding, protection and acceptance of their sibling’s ASD had also increased over time (e.g.…”

“…Many TD siblings described being proud of their sibling with ASD (e.g. Angell et al, 2012 ; Costa & da Silva Pereira, 2019 ; Pavlopoulou & Dimitriou, 2020 ; Petalas et al, 2009 ) and appreciated how unique, smart and funny they are (e.g. Costa & da Silva Pereira, 2019 ; Mascha & Boucher, 2006 ; Petalas et al, 2009 , 2012 ; Ward et al, 2016 ).…”

“Sometimes I Feel Grateful…”: Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia

“…Younger siblings (2-5 years younger than their sibling with ASD) also expressed a more self-centered wish regarding the decision to put their sibling with ASD in a group home, while older siblings (1-19 years older than their sibling with ASD) took into consideration their parents' situation (Benderix, & Sivberg, 2007). While middle childhood siblings (8-12 years of age) reported a need to increase their knowledge about their sibling's disability (Petalas et al, 2009), adolescent siblings (14-17 years old), did not report such a need (Petalas et al, 2012). This suggests that challenges faced at different developmental stages will have different needs, which parents and professionals should be aware of during intervention.…”