Supported Living Environments for Adults with Autism Spectrum Disorders

124 Pages·2017·0.89 MB·English

Dominican Scholar
Graduate Master's Theses, Capstones, and
Student Scholarship
Culminating Projects
2018
What Makes a House a Home?
Supported Living Environments for
Adults with Autism Spectrum Disorders
https://doi.org/10.33015/dominican.edu/2018.edu.04
Rose Meadows
Dominican University of California
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Recommended Citation
Meadows, Rose, "What Makes a House a Home? Supported Living Environments for Adults with Autism
Spectrum Disorders" (2018). Graduate Master's Theses, Capstones, and Culminating Projects. 315.
https://doi.org/10.33015/dominican.edu/2018.edu.04
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Running Head: What Makes a House a Home?

What Makes a House a Home?
Supported Living
Environments for Adults with Autism Spectrum Disorders
By
Rose Meadows

A culminating thesis submitted to the faculty of Dominican University of California in
partial fulfilment of the requirements for the degree of Master of Science in Educati on

San Rafael, CA
May 2018
What Makes a House a Home?
This thesis, written under the direction of the candidate’s thesis advisor and approved
by the department chair, has been presented to and accepted by the Department of
Education in partial fulfillment of the requirements for the degree of Master of Science
in Education. The content and research methodologies presented in this work represent
the work of the candidate alone.

Rose Meadows May 08, 2018
Candidate

Elizabeth Truesdell, PhD May 08, 2018
Department Chair

Jennifer Lucko, PhD May 08, 2018
Thesis Advisor

Jacquelyn Urbani, PhD May 08, 2018
Secondary Thesis Advisor
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What Makes a House a Home?

Copyright © 2018, by Rose Meadows
All Rights Reserved

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What Makes a House a Home?

Table of Contents:
Abstract _______________________________________________________________ vii
Acknowledgements _____________________________________________________ viii
Chapter I: Introduction ___________________________________________________ 1
Chapter II: Literature Review _____________________________________________ 13
Quality of Life and Happiness ___________________________________________ 15
Happiness __________________________________________________________ 17
A Focus on the Individual: ______________________________________________ 20
Resiliency and Person-Centric Theories ___________________________________ 21
The Importance of Belonging: Social Bonds Including Friendship and Community __ 26
Community _________________________________________________________ 30
The Importance of Purpose: Employment and Daily Activities _________________ 34
Conclusion __________________________________________________________ 35
Chapter III: Methods ____________________________________________________ 38
Description and Rationale ______________________________________________ 38
Design _____________________________________________________________ 40
Methods ___________________________________________________________ 41
Interview data. ______________________________________________________ 41
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What Makes a House a Home?
Observation data. __________________________________________________ 43
ISP and IPP data. ___________________________________________________ 44
Research Positionality _________________________________________________ 46
Data Analysis ________________________________________________________ 48
Validity and Reliability ________________________________________________ 49
Chapter IV: Findings ____________________________________________________ 51
“Because We Love Them” – Parents and the Tension Between Providing Care and
Letting Go __________________________________________________________ 53
“The Best Life for Them” - Caregivers and Staff Experience Tension Between Different
Goals, Professionalism, and Friendship ___________________________________ 64
“Blossomed” - Residents and Adult Children with Autism and the Perceived Tension
Between Assimilation and the Unfettered Pursuit of Interests _________________ 72
“A Real Community” – the Environmental Role _____________________________ 76
Conclusion __________________________________________________________ 81
Chapter V: Implications __________________________________________________ 83
Summary of Findings__________________________________________________ 83
Implications for the Literature __________________________________________ 84
Implications for practice and policy ______________________________________ 87
Limitations of this Research ____________________________________________ 90
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What Makes a House a Home?
Directions for Future Research __________________________________________ 91
Chapter VI: Conclusion __________________________________________________ 93
Primary Findings _____________________________________________________ 94
Additional Findings ___________________________________________________ 97
Conclusion __________________________________________________________ 99
Reference List ________________________________________________________ 101
Appendix A: Questions for Parents/Guardians _______________________________ 108
Appendix B: Questions for Caregivers & Staff ________________________________ 110
Appendix C: Figure 1. Interpersonal Tensions Triangle _________________________ 112
Appendix D: IRB Approval Letter __________________________________________ 114

Table of Figures:
Figure 1. Interpersonal Tensions Triangle __________________________________ 112
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What Makes a House a Home?
Abstract

My research aims to address how supported living environments for adults with Autism
Spectrum Disorders (ASDs) can best support their stakeholders. This is an inherently
human and personal problem, but existing research tackling this problem utilizing a
person-centric and/or resiliency theory lens or framework is lacking. My research will
use the perspective of parents/guardians and staff/caregivers in combination with
existing knowledge and research to create ideas for how to maximize support in
supported living environments for adults with ASD and their families. This is a qualitative
study that uses a humanized approach and in-person interviews with stake -holders to
highlight their perspectives and understandings . It was found that there was a great deal
of internal and external tension for stakeholders, both within themselves and in
relationships with each other. Examples of these tensions include: providing care vs.
promoting independence; professionalism vs. friendship; and self -actualization vs.
assimilation. These tensions pushed stakeholders to explore and evaluate difficult topics
which must be addressed in order to have a truly supportive living environment. The
implication is that supported living environments should provide opportunities to air
these tensions and explore their roots, leading to productive conversations, greater
cohesiveness, greater trust, and more individualized supports.

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What Makes a House a Home?

Acknowledgements

I would like to thank Dr. Urbani for her mentorship and accompanying me on this
academic journey. I would like to thank Dr. Lucko for her understanding of the scientific
process. My most heartfelt thanks go out to the families and individuals who opened
their homes and stories to me.
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What Makes a House a Home?
Chapter I: Introduction
1
Sarah felt lost. She felt desperate. She had travelled almost 2,000 miles in the
hope of an answer, only to fail to find one. She was out of options, so she made one
herself.
Sarah is one of a rising number of people: a guardian to an adult child with
Autism. Sarah wanted, like many parents, to assist her child in developing a greater
feeling of self-esteem and independence by living outside of their family home. Sarah
was also getting on in years, and wanted to have the comfort of knowing her child
would be safe and settled, even if she passed on unexpectedly. Sarah didn’t want it to
be left to her other children to sort through the bureaucratic mess of safety-proofing a
house, choosing and paying for appropriate care-providers, facilitating social and
employment opportunities, and otherwise ensuring that Sarah’s daughter, Summer, was
happy, fulfilled, and living a good life. Sarah felt out of options, so she made one of her
own. She worked with other parents in her same situation, and together they founded
their own model of supported living for their adult children with Autism Spectrum
Disorders (ASDs). That supportive living environment became a home called Sunrise.
Sarah and Summer’s story, however, is all too common. At the time of this
writing, the San Francisco Autism Society had recently concluded its annual conference
(2017), where the theme this year was housing. The story of many speakers had striking

1
All names –both of people and locations/residences- presented in this paper are
pseudonyms to protect anonymity.
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