A Phenomenological Study of the Lived Experiences of Parents of Young Children with Autism

338 Pages·2017·13.9 MB·English

Portland State University
PDXScholar
Dissertations and Teses Dissertations and Teses
Fall 12-1-2017
A Phenomenological Study of the Lived Experiences of Parents of
Young Children with Autism Receiving Special Education Services
Donna Marie Barrow
Portland State University
Let us know how access to this document benefts you.
Follow this and additional works at: htps://pdxscholar.library.pdx.edu/open_access_etds
Part of the Special Education and Teaching Commons
Recommended Citation
Barrow, Donna Marie, "A Phenomenological Study of the Lived Experiences of Parents of Young Children with Autism Receiving
Special Education Services" (2017). Dissertations and Teses. Paper 4035.
10.15760/etd.5919
Tis Dissertation is brought to you for free and open access. It has been accepted for inclusion in Dissertations and Teses by an authorized
administrator of PDXScholar. For more information, please contact
A Phenomenological Study of the Lived Experiences of Parents of
Young Children with Autism Receiving Special Education Services
by
Donna Marie Barrow
A dissertation submitted in partial fulfillment of the
requirements for the degree of
Doctor of Education
in
Educational Leadership: Special and Counselor Education
Dissertation Committee:
Randall L. De Pry, Chair
Ingrid Anderson
Christina Nicolaidis
Jana Meinhold
Portland State University
2017
© 2017 Donna Marie Barrow
PARENTING YOUNG CHILDREN WITH AUTISM i

ABSTRACT
Over the past two decades reported rates of autism have steadily risen. The current
incidence is 1 in 68 children. While autism can be reliably diagnosed at 18 months in
most children with the condition, specialized autism treatment rarely begins before a
child’s third or fourth birthday. As screening and diagnosis procedures improve so does
the need for effective early interventions for autism. Researchers and professionals have
expressed a growing concern over the need for effective early interventions for infants
and toddlers with autism. At the same time, there is a dearth of qualitative research
exploring the needs and experiences of parents with a very young child with autism.
Employing a phenomenological framework, the purpose of this study was to investigate
the lived experiences of parents of a young child with autism receiving early special
education services. Unstructured interviews and photo elicitation were used to generate
rich, detailed descriptions of the phenomenon. Data analysis from photographic images
and narrative dialogues illuminated six essential themes across participants: (a) parents as
pioneers: forging the way for future families; (b) making the journey as a family; (c)
navigating uncharted service systems; (d) overcoming challenges and obstacles; (e)
resilience, ingenuity and hope; and (f) reflecting on the first three years and looking
forward. Participants expressed that they felt this study gave them a “voice” in the
research literature. This study is one of the first to investigate the lived experiences of
parents as they seek and secure autism services for their child under five with autism.
PARENTING YOUNG CHILDREN WITH AUTISM ii

ACKNOWLEGEMENTS

First and foremost I would like to thank the four participants who so generously
shared their life experiences and knowledge with me. I would also like to thank my
committee for their guidance and support of my research. Finally, I know all of this
would not have been possible without the understanding, love, and encouragement from
my husband, Ben and my daughter, Sophie.
PARENTING YOUNG CHILDREN WITH AUTISM iii

TABLE OF CONTENTS

Abstract ................................................................................................................ i
Acknowledgements............................................................................................... ii
List of Tables ....................................................................................................... vi
List of Figures....................................................................................................... vii

CHAPTER 1: PROBLEM STATEMENT ........................................................... 1
Introduction ............................................................................................... 1
Significance of the Study........................................................................... 10
Statement of the Research Problem........................................................... 13
Presentation of Research Methods............................................................. 16
Conclusion.................................................................................................. 20

CHAPTER 2: LITERATURE REVIEW.............................................................. 21
Introduction................................................................................................ 21
Theoretical Frameworks............................................................................. 24
Phenomenology.............................................................................. 24
Ecological Systems Theory............................................................ 26
Review of Research Literature on Early Interventions for Autism ........... 29
Review of Research Literature on Caring for an Infant with Autism ....... 55
Review of Research Literature on Autism EI and IDEA, Part C .............. 66
Review of Research Literature on Family Perspectives, Values,
Priorities & Resources................................................................................ 72
Review of the Methodological Literature.................................................. 80
Application of Research Literature to Present Study ................................ 89

CHAPTER 3: METHODS ................................................................................... 91
Introduction ............................................................................................... 91
The Phenomenological Research Paradigm .............................................. 91
Research Questions ................................................................................... 95
Participant Recruitment ............................................................................. 95
Participant Selection Parameters ................................................... 95
Snowball Sampling ....................................................................... 97
Data Collection Methods ........................................................................... 101
First Interview Procedures ............................................................ 108
Second Interview Procedures ........................................................ 111
Maintaining Data ....................................................................................... 114
Role of the Researcher............................................................................... 115
Data Analysis............................................................................................. 118
Addressing Research Validity.................................................................... 120
Chapter 3 Summary: ................................................................................. 123
PARENTING YOUNG CHILDREN WITH AUTISM iv

CHAPTER 4: RESEARCH FINDINGS AND DISCUSSION ........................... 124
Introduction................................................................................................ 124
Section One: The Four Participant Narratives........................................... 131
Narrative 1: Caroline's Lived Experiences .................................... 132
Narrative 2: Emily’s Lived Experiences ....................................... 146
Narrative 3: Jessica’s Lived Experiences ...................................... 164
Narrative 4: Karen’s Lived Experiences ....................................... 180
Section Two: The Essential Themes ......................................................... 203
Essential Theme 1: Parents as Pioneers ........................................ 207
Essential Theme 2: Making the Journey as a Family .................... 212
Essential Theme 3: Navigating the Undeveloped New World
(Autism EI Service Systems) ........................................................ 215
E ssential Theme 4: Overcoming Obstacles and Challenges ......... 226
Essential Theme 5: Ingenuity, Resilience, and Perseverance ....... 232
Essential Theme 6: Reflecting on the First Three Years and
Looking Forward ........................................................................... 235
Limitations ................................................................................................ 237
Chapter 4 Summary ................................................................................... 239

CHAPTER 5: REFLECTIONS, CONCLUSIONS AND IMPLICATIONS ....... 241
Introduction................................................................................................ 241
Section 1: How My Study Results Addressed the Research Questions
Research Question (1a): What are Parents Experiences of
Having a Young Child Recently Diagnosed with
Autism?.......................................................................................... 248
Recognition of Early Markers and Facing Invalidation .... 248
Feelings about Accessing Services for Their Child .......... 252
Navigating Services Birth to Age Three ........................... 254
Social Media Through Early Concerns and Diagnosis
Phases ................................................................................ 2
Research Question (1b): What are the Structural Essences of
the Phenomena of Parenting a Very Young Child with Autism
in the Context of EI Services? .................................................. 260
Pioneering (Essential Theme One) .................................. 260
Making the Journey as a Family (Essential Theme Two). 261
Navigating the Undeveloped New World of Autism
Services for Very Young Children (Essential Theme
Three) ............................................................................... 262
Overcoming Obstacles and Challenges (Essential Theme
Four).................................................................................. 267
Ingenuity, Resilience, and Perseverance (Essential
Theme Five)...................................................................... 268
Reflecting on the First Three Years and Looking
Forward (Essential Theme Six) ....................................... 270
PARENTING YOUNG CHILDREN WITH AUTISM v

Section Two: Implications, Future Directions and Limitations .............. 272
The Study’s Findings in the Context of Bronfenbrenner’s
Ecological Systems Theory .......................................................... 272
Testing Hypotheses Generated from the Results of this Study.. 277
Replication with Other Populations .......................................... 277
Longitudinal Replication with Same Participants ..................... 278
Photo-Elicitation Utility in Early Intervention Interviewing..... 279
Limitations ................................................................................................ 280
Chapter 5 Summary ................................................................................... 281

REFERENCES..................................................................................................... 283

Appendix A: Recruitment Materials for Snowball Sample ................................. 305
Appendix B: Recruitment Email [to participant] ................................................. 307
Appendix C: Recruitment Flyer [to participant]................................................... 308
Appendix D: Initial Phone Script ......................................................................... 309
Appendix E: Resource List .................................................................................. 312
Appendix F: First Interview Script & Protocol ................................................. 315
Appendix G: Informed Consent & Child Assent ................................................. 317
Appendix H: Second Interview Script & Protocol .............................................. 323
Appendix I: Artifact Catalogue ............................................................................ 325
Appendix J: Audit Trail and Auditor Attestation ................................................ 326
PARENTING YOUNG CHILDREN WITH AUTISM vi

LIST OF TABLES

Table 1 Rhetoric Describing ABA Practices................................................ 49
Table 2 Participant Reported Response from Pediatrician .......................... 209
Table 3 Participants Concerns, Wait times, Services (in months) ............... 216
Table 4 Services Participants Were Receiving at the Time of the Study..... 218
Table 5 Participant Activities to Support Child Engagement ...................... 234
Table 6 Essential Themes and Subsidiary Themes ...................................... 247
Table 7 Participants’ Report of Child’s Earliest Manifestations of Autism 249
Table 8 Recommended Service Levels for Oregon Children ...................... 265
PARENTING YOUNG CHILDREN WITH AUTISM vii

LIST OF FIGURES

Figure 1 Organizing Principle for Literature Review.................................... 21
Figure 2 Bronfenbrenner’s Ecological Systems Theory................................ 27
Figure 3 Family Systems Intervention Model................................................ 29
Figure 4 Themes in ASD-EI Literature.......................................................... 80
Figure 5 Photograph C-2: Caroline’s family ................................................. 135
Figure 6 Photograph C-3. Caroline’s son Nathan and his infant brother....... 136
Figure 7 Photograph C-5 Caroline’s son after ear surgery ........................... 140
Figure 8 Photograph C-7 Nathan with his occupational therapist ................ 145
Figure 9 Photograph E-1 Emily’s children with their aunt ........................... 147
Figure 10 Photograph E-2 Emily’s children in a hotel while on vacation ...... 148
Figure 11 Photograph E- Emily’s husband standing in the driveway ............. 149
Figure 12 Photograph E-4 Emily’s children on Christmas morning .............. 151
Figure 13 Photograph E-5 Emily’s children with their grandmother ............. 152
Figure 14 Photograph K-1 Karen, her husband, and Carter ............................ 182
rd
Figure 15 Photograph K-2 Carter’s 3 birthday ............................................. 183
Figure 16 Photograph K-3 A family beach day .............................................. 187
Figure 17 Box display of comparison between photographs K-4 and K-5 ..... 189
Figure 18 Photograph K-4. Karen is holding Carter at 12 months ................. 196
Figure 19 Box display of Karen’s last five photographs ................................. 201
Figure 20 Box display of email from Karen ................................................... 202
Figure 21 Graphic representation of participants’ journeys ............................ 206