Year

2014

Degree Name

Doctor of Philosophy

Department

School of Psychology

Abstract

Individuals with Autism Spectrum Disorder (ASD) experience persistent and significant social communicative impairments, as well as restricted and repetitive behaviours and/or interests. There is currently a dearth of literature investigating the experiences of adolescents with ASD, despite research findings indicating adolescence is a particularly challenging period for these individuals. In addition to the significant influence of ASD on the individual, having a family member with the condition can have chronic and pervasive effects on individual family members and the family unit as a whole. However, research investigating the experiences of families who have an adolescent member with ASD is scarce.

The overall aim of this thesis is to investigate the lived experiences of adolescents with ASD and their families. More specifically, the studies explore the positive and challenging aspects of adolescence; the coping strategies used by family members; and the distribution of roles and responsibilities within the family and their impact on individual and family functioning. A qualitative approach was used to interview multiple family members, including adolescents with ASD, mothers, fathers, and adolescent siblings.

The thesis is informed by Family Systems and Personal Constructivist frameworks. Chapters 2 and 3 examine these frameworks in relation to understanding adolescents with ASD and their families. Conceptual and methodological components of these frameworks were used to guide subsequent qualitative investigations, which are presented in Chapters 4-7. More specifically, Chapters 4 and 5 focus on the experiences of adolescent boys and girls with ASD, respectively; Chapter 6 investigates the experiences of parents; and Chapter 7 identifies issues pertinent to adolescent neurotypically developing siblings. The findings of these qualitative investigations highlight a range of adolescent-specific issues, covering physical, cognitive, emotional, social, and sexual domains, which may provide guidance to clinicians, researchers, and family members supporting adolescents with ASD and their families.

Chapter 8 utilises Personal Constructivist methodology to investigate the dependency patterns of adolescents with ASD. Findings indicate that the adolescents had various ways of dispersing their dependencies amongst resources and differed in the types of support most utilised. Additionally, by including family members, the study was able to investigate family awareness of the adolescents’ preferences. The findings presented in this chapter offer a novel approach to understanding the experiences of families living with ASD, given the adoption of the combined Family Systems and Personal Constructivist framework.

The thesis concludes with a synthesis of the key findings of the conceptual and qualitative investigations. It considers research limitations of the studies conducted and discusses implications for future research and clinical practice. Overall, the thesis findings address an important gap in literature and have the potential to make significant contributions to the field of clinical psychology by directly informing clinical interventions for adolescents with ASD and their families.

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Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily represent the views of the University of Wollongong.