Department

Counseling and Human Services

Degree Name

Doctor of Philosophy (PhD)

Date of Award

Summer 6-2023

Format

pdf

Degree Level

Ph.D

LCSH subject

Autism -- Autism spectrum disorders -- Family relationships -- Sibilngs -- Sibiling Relations

Medium

manuscript

Proquest Document ID

30639914

Identifier

1518571605

School/University

St. Mary's University

Size or duration

180 pages

Document Type

Dissertation

First Advisor

Ratliff, Dan

Second Advisor

Murphree, Marisol

Third Advisor

Hampsten, Katherine

Abstract

This study explored the lived experiences of adult siblings of a child with autism utilizing the framework of ambiguous loss theory (Boss, 1999). An exploratory analysis of the sibling experience began with the research question: What are the lived experiences of adult siblings of individuals diagnosed with autism spectrum disorder? Further analysis used the theoretical framework of ambiguous loss theory with the secondary question: How have adult siblings been affected by ambiguous loss in their experiences with a sibling with autism spectrum disorder? Heidegger’s (1962) hermeneutic phenomenological approach was utilized to guide the semi structured in-depth interviews and to analyze the thematic findings of these interviews. A sample of five adult sisters were purposively selected from two autism support groups. Three core themes emerged from the analysis: Adaptation, Ambiguous Loss, and Increased Self-Awareness. The theme of Adaptation represented the changes in the family system that occurred, the isolating effect of these changes, and the coping mechanisms participants developed in response to family stress. The theme of Ambiguous Loss for the participants evoked a range of conflicting emotions as they grappled with the loss of parent attention and the youth they had envisioned. Increased Self-Awareness was represented in the accounts of greater maturity, empathy, and self understanding through the sibling experience. The essence of the study, Increased Self v Awareness, emerged from the readily apparent personal gains rather than losses in the overall lived experience for participants.

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