Through the Eyes of a Glass Sibling: A Journey of Grief, Hope, and Meaning

Date of Award

Summer 8-23-2025

Document Type

Doctoral Research Paper

Degree Name

Psy.D.

Organizational Unit

Graduate School of Professional Psychology

First Advisor

Colby Rogers

Second Advisor

Judith Fox

Third Advisor

Amy Van Arsdale

Copyright Statement / License for Reuse

All Rights Reserved
All Rights Reserved.

Keywords

Existential therapy, Intellectual disability, Care-giving, Glass children, Profound autism

Abstract

Research on interventions for individuals and families impacted by co-occurring intellectual and developmental disabilities has increased over the last two decades, with a particular focus on maternal care, family-based programs, and early intervention. While continued work is critical in these areas, a significant gap in research and resources exists for intellectually disabled individuals and their families into adulthood. As individuals with differing intellectual and developmental abilities live longer with advances in medicine, many are outliving their parents, who have served as primary caregivers and guardians. As a result, adult siblings increasingly take on greater responsibility for their sibling's care, yet are left emotionally and logistically under-resourced to take on this task.

Within this paper, I will review the unique presentation of co-occurring autism spectrum disorder and intellectual disability, as well as the relevant impact, needs, and gaps in resources that adult siblings, whom I will refer to as “glass siblings,” may encounter in a caregiving role. The term glass sibling can be considered an extension of the term “glass children” to encompass this identity into adulthood. The term “glass child” has previously been used in research and autobiographical essays of siblings to denote the unique identity of children who are siblings of individuals with significant medical needs, chronic illness, or developmental differences (Hanvey et al., 2022). Using the existing literature and autoethnographic techniques to illustrate my experience as a glass sibling, I will discuss the relevance of existential themes within this population, including freedom, isolation, death, and survivor's guilt. The potential benefit of existential therapies for siblings will be explored along with proposed areas of inquiry, laying a foundation for future research on the implementation of existential therapies within this population. For glass siblings, existential therapies may offer the space to grieve and grow within this challenging, heartbreaking, life-giving role while allowing meaning to emerge from an experience that is often emotionally inexplicable and historically overlooked.

Copyright Date

6-19-2025

Publication Statement

Copyright is held by the author. Permanently suppressed.

Rights Holder

Emily Cantie-Koenig

Provenance

Received from author

File Format

application/pdf

Language

English (eng)

Extent

58 pgs

File Size

4.5 MB

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