Minority Parents' Narratives of Living with Their Child with an Autism Spectrum Disorder

172 Pages·2016·1.24 MB·English

by  Monique Willis

Loma Linda University
LOMA LINDA UNIVERSITY
School of Behavioral Health
in conjunction with the
Faculty of Graduate Studies

_______________________

Minority Parents’ Narratives of Living with Their Child
with an Autism Spectrum Disorder

by

Monique Willis

_______________________

A dissertation submitted in partial satisfaction of
the requirements for the degree
Doctor of Philosophy in Marriage and Family Therapy

_______________________

September 2014
© 2014

Monique Willis
All Rights Reserved
Each person whose signature appears below certifies that this dissertation in his/her
opinion is adequate, in scope and quality, as a dissertation for the degree Doctor of
Philosophy.

, Chairperson
Colwick Wilson, Professor of Counseling and Family Sciences

Curtis Fox, Professor of Counseling and Family Sciences

Winetta Oloo, Assistant Professor of Counseling and Family Sciences

Rod Rhodes, Licensed Psychologist in Private Practice

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ACKNOWLEDGEMENTS

I am fortunate to have the opportunity to pursue an advanced degree in Loma
Linda University’s Marriage and Family Therapy Program. My aspirations to this point
would have waned had it not been for the persistence and support of the department
faculty over the past years. In particular, the chair of my dissertation committee, Dr.
Colwick Wilson, has served as an ideal mentor and counselor; I share my deepest
appreciation for him as he saw beyond the many challenges of my life and encouraged
me to pursue my destiny. I would also like to impart my sincerest appreciation to Dr.
Curtis Fox, Dr. Winetta Baker, and Dr. Rod Rhodes for serving as my committee
members and for their consistent dedication to my dissertation process. Thank you to the
faculty, especially Dr. Carmen Knudsen-Martin who encouraged me to put pen to paper;
and to the many students who journeyed alongside me.
With the utmost gratitude, I acknowledge my husband and ever-evolving, lifetime
friend—Robert—for serving as the rock of our family. The girls and I are endlessly
blessed by the man you are. To my daughters, my sunshine, you have and will continue
to be my reminder of the graciousness of God. I am fortunate to be your mother, and I
am eager to witness what God has for your lives. I love you Gillian and Sydney, forever
and always. To my mother and father, and to my godmother, Sonia—you have provided
a haven for my work and for my family to develop. Thank you. I am also grateful to my
extended family, church family, and closest friends, who have resolved to be here until
completion. Most of all, I thank God for the wisdom and the courage to do what felt
impossible and unrealistic. My heavenly Father, who began this work, is faithful to
complete it.
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CONTENT

Approval Page .................................................................................................................... iii

Acknowledgements ............................................................................................................ iv

List of Figures .................................................................................................................. viii

List of Tables ..................................................................................................................... ix

List of Abbreviations ...........................................................................................................x

Abstract .............................................................................................................................. xi

Chapters
1. Introduction ..............................................................................................................1
Rationale for the Study ......................................................................................6
Organization of the Proposal .............................................................................7

2. Literature Review.....................................................................................................9

Autism Spectrum Disorders .............................................................................10

History of ASD ..........................................................................................11
Diagnostic Criteria .....................................................................................16

Treatment .........................................................................................................20

Intensive Behavioral Intervention ..............................................................21
Medication .................................................................................................22
Complementary and Alternative Medicine ................................................23
Family-Centered Interventions ..................................................................25

Parental Influences ...........................................................................................26

Symptomatic Presentation, Discovery, and Diagnosis .............................27
Grief and Loss ...........................................................................................28
Altered Life Cycle .....................................................................................29
Family Role Strain ....................................................................................30
Adaptation and Resilience .........................................................................31

3. Theoretical Foundations.........................................................................................34

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Family Systems Theory ...................................................................................35
Family Systems-Illness Model .........................................................................44

Psychosocial (Illness) Type ......................................................................47

Onset ...................................................................................................48
Course .................................................................................................49
Outcome ..............................................................................................50
Incapacitation .......................................................................................52
Uncertainty and Predictability ............................................................53

Time Phase .................................................................................................54

Crisis Phase ..........................................................................................54
Chronic Phase ......................................................................................57

Family System Variables ...........................................................................58

Social Constructivism ......................................................................................61

4. Method ...................................................................................................................65

Grounded Theory .............................................................................................67

Constructivist Grounded Theory................................................................70

The Researcher.....................................................................................71
Research Topic and Questions .............................................................73
Sampling Procedures ...........................................................................74

Description of Participants .........................................................................76

Procedures for Gathering Rich Data ................................................................77

Focus Groups .............................................................................................78
Individual Interviews .................................................................................80
Memo Writing ............................................................................................81
Data Analysis and Procedures ...................................................................82
Evaluation Criteria .....................................................................................84

Implications......................................................................................................85
Limitations .......................................................................................................87
Conclusion .......................................................................................................88

5. Publishable Paper: Narratives of Minority and Underserved Parents Pushing
Through Autism Spectrum Disorder
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Abstract ............................................................................................................90
Introduction ......................................................................................................92
Literature Review.............................................................................................96
Theoretical Framework ..................................................................................100
Method ...........................................................................................................102

Design ......................................................................................................102
Participants ...............................................................................................102
Procedures ................................................................................................105
Data Analysis ...........................................................................................108
Study Credibility ......................................................................................110

Results ............................................................................................................111

Pushing Through ......................................................................................112

Spiritual or Religious Consciousness.................................................113
Settling into the Insecurities...............................................................115
Conjuring a Strong Self .....................................................................116
A Need to Know ................................................................................118
Advocacy and Mentorship .................................................................120
Shared Support ...................................................................................121

Hopes and Desires....................................................................................124

Discussion ......................................................................................................126
Limitations .....................................................................................................128
Recommendations for Future Studies ............................................................129
Implications and Conclusion..........................................................................129

References ........................................................................................................................132

Appendices

A. Phone Screen ........................................................................................................149

B. Informed Consent.................................................................................................151

C. Interview Guide and Questions for Parents .........................................................154

D. Parent Questionnaire ............................................................................................156

E. Demographics ......................................................................................................158

F. Adaptability and Resiliency Model .....................................................................159
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FIGURE

Figure Page

1. Adaptability and Resiliency Model .....................................................................167
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TABLE

Table Page

1. Demographics ......................................................................................................166

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