Growing up with autism:Experiences and perceptions of neuro-typically developing sisters

  • Linda Callaghan

Student thesis: Phd

Abstract

Research shows that raising a child with ASD makes considerable demands on family resources, yet the experiences of neuro typically developing (NTD) siblings of children and young people with ASD remain relatively unexplored. The findings of quantitative research are mixed and inconclusive and little is known about the processes that mediate and moderate the experience of living with a sibling with ASD (Hodapp et al., 2005; Meadan et al., 2010; Petalas et al., 2009). Further descriptive and exploratory research is indicated with participants of different groups to illuminate the multi-factorial nature of the phenomenon and help understand the apparent differences in individual experiences and outcomes. This study uses semi-structured interviews and thematic analysis to explore the self-reported experiences and perceptions of eight neuro-typically developing sisters, aged 10-19, who are also the sole NTD siblings in their families. Their parents were also interviewed to provide contextual information and to ascertain their views on the sibling experience. In addition to looking at their family life and sibling relationships, this study also explores school life and peer group relationships. Analysis suggests eight themes of sibling experience: Continuum of Perceived Challenge: Positively and negatively perceived aspects of having a sibling with ASD. Continuum of Acceptance; Coping and Resilience; Continuum of Relatability; Continuum of Positive Identity; Social world: Threats and Friends; Social Carer; Support.NTD sisters adopt a social caring role towards their sibling with ASD, that is different to that fulfilled by parents and transcends home and school boundaries. NTD sisters can be negatively affected by tension between home and school regarding provision for the child with ASD. Reconciling social persona with loyalty to one's sibling, developing a mutually satisfying sibling relationship and findings strengths and positive meaning in one's experiences, are associated with positive adjustment. Mother-daughter relationship and family beliefs and values are highly influential in the psycho-emotional adjustment of NTD sisters. Implications for the practice of applied psychologists and school-based professionals, in response to these findings, are explored and areas for further research are suggested.
Date of Award1 Aug 2016
Original languageEnglish
Awarding Institution
  • The University of Manchester
SupervisorNeil Humphrey (Supervisor) & Caroline Bond (Supervisor)

Keywords

  • autism
  • sisters
  • siblings
  • wellbeing

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