DOCSLIB.ORG

The Experiences of Maternal Caregivers of Children with Autism

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
The Experiences of Maternal Caregivers of Children with Autism THE EXPERIENCES OF MATERNAL CAREGIVERS OF CHILDREN WITH AUTISM A DISSERTATION SUBMITTED TO THE GRADUATE DIVISION OF THE UNIVERSITY OF HAWAIʽI AT MĀNOA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN SOCIOLOGY December 2018 By Kalma K. Wong Dissertation Committee: Wei Zhang, Chairperson Yean-Ju Lee Jennifer Darrah Tetine Sentell Alan Katz In Memoriam Dr. Donald William “Bill” Wood 1946-2015 “Somewhere, something incredible is waiting to be known.” – Carl Sagan ii Acknowledgements This dissertation would not have been possible without the support of a number of people. I would like to thank all of the members of my dissertation committee, past and present, for their encouragement and guidance. I especially would like to thank Dr. Wei Zhang, who stepped in as my chair after the passing of Dr. Bill Wood. I am extremely grateful for her expertise, patience, and understanding. I am truly thankful for the insights and feedback that were provided by the final members of my committee. I would also like to thank Dr. Jennifer Dustow for her continued support and guidance throughout the years. A special thanks goes to Dr. Zachary Oliver for his sage advice and valuable input. Most importantly, I would like to thank the twenty-one mothers who participated in this study. I am indebted to them for sharing their deeply personal stories with me. To them, I give my wholehearted gratitude. Finally, I would like to thank my children, who are my raison d’être and the inspiration for this dissertation. iii Abstract Autism is a complex neurobiological disorder that currently affects approximately 1 in 59 children in the United States (CDC 2018). Some common symptoms associated with autism include inappropriate and repetitive behaviors, difficulties with communication and social interaction, and gastrointestinal problems. These characteristics can make caring for a child with autism particularly challenging and stressful. Caring for children with autism has been shown to affect the well-being and mental health of parents, particularly mothers (Benson 2010; Gatzoyia et al. 2014; Peters-Scheffer, Didden, and Korzilius 2012; Stuart and McGrew 2009). In addition, autism can be a particularly expensive disability to deal with (Green 2007; Wang et al. 2013). The purpose of this study was to describe and understand the maternal experience of caring for children with autism. Using the Stress Process Theory as a guide, this study aimed to identify the challenges and positive aspects of caring for a child with autism, as well as the financial, emotional, and physical impacts of caring for a child with autism. This study also looked at how these mothers utilize social support and coping to mediate the stress of caregiving, and how the meanings they ascribe to their caregiving experience help to explain whether the demands of caring for their children is seen as positive or burdensome. In-depth semi-structured interviews of 21 mothers of children with autism under the age of 18 in Honolulu, Hawaii were completed for this study. The thematic analysis revealed four themes that can be categorized as stressors (concern for the child’s future independence, finding the right services for autism, safety, and trust), two themes that can be categorized as resources (social support and learning about autism), and two themes that can be classified as outcomes (emotional reactions to caring for a child with autism and mother’s self-care). The overarching iv theme of the study was the unclear path that the mothers must take after their children have been diagnosed with autism. The majority of the mothers interviewed for this study expressed that they experienced stress, anxiety, depression, or anger since the diagnosis of their children. The majority of the mothers also said that they experienced some form of adverse physical effect (e.g., exhaustion or high blood pressure) since the diagnosis. The findings of this study highlight the need for more support for mothers of children with autism and the need for coordination between the medical community, the mental health resources, the behavioral analysts, and the government agencies that provide autism services. v Table of Contents In Memoriam .................................................................................................................................. ii Acknowledgements ........................................................................................................................ iii Abstract .......................................................................................................................................... iv List of Figures and Tables.............................................................................................................. ix Chapter 1 ......................................................................................................................................... 1 Caregiving ................................................................................................................................... 1 Caring for Children with Autism ................................................................................................ 2 Stress Process Framework ........................................................................................................... 3 Research Aims............................................................................................................................. 4 Delimitations ............................................................................................................................... 5 Chapter 2 ......................................................................................................................................... 7 Women as Caregivers.................................................................................................................. 7 Caregiving as a Chronic Stressor and the Stress Process .......................................................... 11 Caring for Children with Autism and other Disabilities ........................................................... 16 Autism Diagnosis ...................................................................................................................... 20 Autism Diagnosis and the Changing DSM............................................................................ 21 Changes in Autism Prevalence .............................................................................................. 23 Autism Treatments and Interventions ....................................................................................... 26 Behavioral Modification Techniques .................................................................................... 27 Structured Teaching ............................................................................................................... 31 Social/Relationship Approaches ............................................................................................ 32 Allied Health Services ........................................................................................................... 34 Auxiliary therapies ................................................................................................................ 36 Psychotropic Medication ....................................................................................................... 43 “Alternative” Biomedical Treatments ................................................................................... 45 Acquiring Autism Treatments and Services.............................................................................. 52 IDEA and the IEP ...................................................................................................................... 53 Medicaid .................................................................................................................................... 56 Health Insurance and Autism Insurance Laws .......................................................................... 60 Autism in Hawaii ...................................................................................................................... 63 vi Education ............................................................................................................................... 64 Medicaid ................................................................................................................................ 73 Insurance Mandate ................................................................................................................. 76 Summary ................................................................................................................................... 79 Chapter 3 ....................................................................................................................................... 80 Introduction ............................................................................................................................... 80 Research Aims and Questions ................................................................................................... 80 Sample ....................................................................................................................................... 82 Interview Process ...................................................................................................................... 82 Ethical Considerations..............................................................................................................
Load more

Recommended publications
  • Autism Society History
    Feature | Autism Society History Where We’ve Been and Where We’re Going The Autism Society’s Proud History s the nation’s oldest grassroots autism organization, the Autism Society has Abeen working to improve the lives of all affected by autism for 46 years. When the organization was founded in 1965, the autism community was very different than it is today: the term “autism” was not widely known, and doctors often blamed the condition on “refrigerator mothers,” or parents who were cold and unloving to their children – a theory that we now know to be completely false. Perhaps even more discouraging than the blame and guilt placed upon parents of children with autism at this time was the complete lack of treatment options. Parents were often told that their child would never improve, and that he or she should be institutionalized. “All practitioners we saw had one characteristic in common – none of them was able to undertake treatment,” wrote Rosalind Oppenheim, mother to a then-6-year-old son with autism, in an article in the June 17, 1961, Saturday Evening Post. “‘When will you stop running?’ one well-meaning guidance counselor asked us along the way. When indeed? After eighteen costly, heartbreaking months we felt that we had exhausted all the local medical resources.” Oppenheim’s article garnered many letters from other parents of children with autism who had had similar experiences. She sent them on to Dr. Bernard Rimland, another parent of a child with autism who was also a psychologist. Not long after, Dr. Rimland published the landmark book Infantile Autism, the first work to argue for a physical, not psychological, cause of autism.
    [Show full text]
  • Autism and New Media: Disability Between Technology and Society
    1 Autism and new media: Disability between technology and society Amit Pinchevski (lead author) Department of Communication and Journalism, The Hebrew University of Jerusalem, Israel John Durham Peters Department of Communication Studies, University of Iowa, USA Abstract This paper explores the elective affinities between autism and new media. Autistic Spectrum Disorder (ASD) provides a uniquely apt case for considering the conceptual link between mental disability and media technology. Tracing the history of the disorder through its various media connections and connotations, we propose a narrative of the transition from impaired sociability in person to fluent social media by network. New media introduce new affordances for people with ASD: The Internet provides habitat free of the burdens of face-to-face encounters; high-tech industry fares well with the purported special abilities of those with Asperger’s syndrome; and digital technology offers a rich metaphorical depository for the condition as a whole. Running throughout is a gender bias that brings communication and technology into the fray of biology versus culture. Autism invites us to rethink our assumptions about communication in the digital age, accounting for both the pains and possibilities it entails. 2 Keywords: Autism (ASD), Asperger’s Syndrome, new media, disability studies, interaction and technology, computer-mediated communication, gender and technology Authors’ bios Amit Pinchevski is a senior lecturer in the Department of Communication and Journalism at the Hebrew University, Israel. He is the author of By Way of Interruption: Levinas and the Ethics of Communication (2005) and co-editor of Media Witnessing: Testimony in the Age of Mass Communication (with Paul Frosh, 2009) and Ethics of Media (with Nick Couldry and Mirca Madianou, 2013).
    [Show full text]
  • Becoming Autistic: How Do Late Diagnosed Autistic People
    Becoming Autistic: How do Late Diagnosed Autistic People Assigned Female at Birth Understand, Discuss and Create their Gender Identity through the Discourses of Autism? Emily Violet Maddox Submitted in accordance with the requirements for the degree of Master of Philosophy The University of Leeds School of Sociology and Social Policy September 2019 1 Table of Contents ACKNOWLEDGEMENTS ................................................................................................................................... 5 ABSTRACT ....................................................................................................................................................... 6 ABBREVIATIONS ............................................................................................................................................. 7 CHAPTER ONE ................................................................................................................................................. 8 INTRODUCTION .............................................................................................................................................. 8 1.1 RESEARCH OBJECTIVES ........................................................................................................................................ 8 1.2 TERMINOLOGY ................................................................................................................................................ 14 1.3 OUTLINE OF CHAPTERS ....................................................................................................................................
    [Show full text]
  • Best Kept Secret a Film by Samantha Buck
    POV Community Engagement & Education Discussion GuiDe Best Kept Secret A Film by Samantha Buck www.pbs.org/pov LETTER FROM THE FILMMAKER The first question i get about Best Kept Secret is usually “What is your personal relation - ship to autism?” until making this film, i always thought the answer was “none.” What i learned is that we are all connected to it. Autism is part of who we are as a society. Across the country, young adults who turn 21 are pushed out of the school system. They often end up with nowhere to go; they simply disappear from productive society. This is what edu - cators call “falling off the cliff.” While i was on the festival circuit with my last feature documentary, 21 Below , i saw many films about young children with autism. These films were moving and important, but they only spoke of a limited population—predominately caucasians from financially stable fam - ilies. But what happens to children with autism who grow up in other circumstances? i began to research public schools in inner-city areas all over the united states, and the best kind of accident of fate brought me to JFK in newark, n.J. and Janet Mino—a force of na - ture who changed my life. she has been a constant reminder to have faith, value every member of society and believe in people’s potential. Best Kept Secret on the surface could seem like a straightforward vérité film, but we tried to accomplish something different—a subtle and layered story that takes on issues of race, class, poverty and disability through a different lens than the one to which many people are accustomed.
    [Show full text]
  • Autism: a Generation at Threat Review Article
    April 2009 JIMA:38486-IMANA.qxd 4/27/2009 10:10 AM Page 28 Review Article Autism: A Generation at Threat Sabeeha Rehman, MPS, FACHE President and Founding Member of National Autism Association New York Metro Chapter New York, New York Fellow of American College of Healthcare Executives Abstract A generation of children is at risk as the incidence of autism increases. No consensus exists on the causes of autism or its treatment. A wide range of poten- tial factors such as genetics, vaccines, and environmental toxins is being explored. Some clinicians offer a combination of behavioral, educational, and pharmaceutical treatments, whereas allied health professionals stress diet, bio- medical interventions, and chelation. With a lack of an organized approach to diagnosis and treatment and a lack of trained professionals, children are not receiving timely interventions. Curing autism has to be made a national priori- ty. National programs should conduct research, standardize treatments, and offer public and professional education. Key words: Autism, autism spectrum disorders, health planning. Purpose impact the normal development of the brain in the he incidence of autism spectrum disorders areas of social interaction, communication skills, and (ASD) is becoming an epidemic. This phenome - cognitive function. Individuals with ASD typically non, not unique to the United States or Europe, have difficulties in verbal and nonverbal communi - Tis fast emerging as a worldwide problem. This paper cation, social interactions, and leisure or play activi - reviews the gains made and obstacles faced in the ties. Individuals with ASD often suffer from numer - diagnosis and treatment of ASD and proposes a com - ous physical ailments, which may include, in part, prehensive plan to deal with this phenomenon.
    [Show full text]
  • Disability in an Age of Environmental Risk by Sarah Gibbons a Thesis
    Disablement, Diversity, Deviation: Disability in an Age of Environmental Risk by Sarah Gibbons A thesis presented to the University of Waterloo in fulfillment of the thesis requirement for the degree of Doctor of Philosophy in English Waterloo, Ontario, Canada, 2016 © Sarah Gibbons 2016 I hereby declare that I am the sole author of this thesis. This is a true copy of the thesis, including any required final revisions, as accepted by my examiners. I understand that my thesis may be made electronically available to the public. ii Abstract This dissertation brings disability studies and postcolonial studies into dialogue with discourse surrounding risk in the environmental humanities. The central question that it investigates is how critics can reframe and reinterpret existing threat registers to accept and celebrate disability and embodied difference without passively accepting the social policies that produce disabling conditions. It examines the literary and rhetorical strategies of contemporary cultural works that one, promote a disability politics that aims for greater recognition of how our environmental surroundings affect human health and ability, but also two, put forward a disability politics that objects to devaluing disabled bodies by stigmatizing them as unnatural. Some of the major works under discussion in this dissertation include Marie Clements’s Burning Vision (2003), Indra Sinha’s Animal’s People (2007), Gerardine Wurzburg’s Wretches & Jabberers (2010) and Corinne Duyvis’s On the Edge of Gone (2016). The first section of this dissertation focuses on disability, illness, industry, and environmental health to consider how critics can discuss disability and environmental health in conjunction without returning to a medical model in which the term ‘disability’ often designates how closely bodies visibly conform or deviate from definitions of the normal body.
    [Show full text]
  • The Impact of a Diagnosis of Autism Spectrum Disorder on Nonmedical Treatment Options in the Learning Environment from the Perspectives of Parents and Pediatricians
    St. John Fisher College Fisher Digital Publications Education Doctoral Ralph C. Wilson, Jr. School of Education 12-2017 The Impact of a Diagnosis of Autism Spectrum Disorder on Nonmedical Treatment Options in the Learning Environment from the Perspectives of Parents and Pediatricians Cecilia Scott-Croff St. John Fisher College, [email protected] Follow this and additional works at: https://fisherpub.sjfc.edu/education_etd Part of the Education Commons How has open access to Fisher Digital Publications benefited ou?y Recommended Citation Scott-Croff, Cecilia, "The Impact of a Diagnosis of Autism Spectrum Disorder on Nonmedical Treatment Options in the Learning Environment from the Perspectives of Parents and Pediatricians" (2017). Education Doctoral. Paper 341. Please note that the Recommended Citation provides general citation information and may not be appropriate for your discipline. To receive help in creating a citation based on your discipline, please visit http://libguides.sjfc.edu/citations. This document is posted at https://fisherpub.sjfc.edu/education_etd/341 and is brought to you for free and open access by Fisher Digital Publications at St. John Fisher College. For more information, please contact [email protected]. The Impact of a Diagnosis of Autism Spectrum Disorder on Nonmedical Treatment Options in the Learning Environment from the Perspectives of Parents and Pediatricians Abstract The purpose of this qualitative study was to identify the impact of a diagnosis of autism spectrum disorder on treatment options available, within the learning environment, at the onset of a diagnosis of autism spectrum disorder (ASD) from the perspective of parents and pediatricians. Utilizing a qualitative methodology to identify codes, themes, and sub-themes through semi-structured interviews, the research captures the lived experiences of five parents with children on the autism spectrum and five pediatricians who cared for those children and families.
    [Show full text]
  • Autism Spectrum Disorder: an Overview
    Autism Spectrum Disorder: An Overview March 13, 2017 Carol Hassler, MD, FAAP Medical Director, Child Development Clinic and Children with Special Health Needs Program [email protected] 1-802-863-7338 Vermont Department of Health/Maternal & Child Health Division Overview WHAT: ASD, Spectrum, Disorder, and DSM5 WHEN: Brief (very) History WHERE: Prevalence WHY: What we think we know…and what we know that we don’t know about causes HOW AND WHO: Early recognition and screening Diagnostic processes Core features and related features Interventions/treatment Outcomes and the future Why is VDH/public health involved with children with ASD and developmental concerns Public Health and “prevention” Primary, Secondary and Tertiary prevention Populations, data, and assurance Early recognition and intervention Maternal and Child Health and Children with Special Health Needs in systems of services ASD is not a disease… …But a neurodevelopmental syndrome or disorder: a group of symptoms that tend to cluster together and share a common natural history/course A disease is a syndrome for which there is a known cause and/or a known pathophysiological process Autism is a spectrum disorder Defined by 7 core behaviors that differ in such dimensions as onset, description, intensity Boundaries of the spectrum are defined by a committee, reviewed and revised by broad input, and finalized by consensus in the DSM5, the 2013 fifth edition of The Diagnostic and Statistical Manual A multi-dimensional spectrum disorder ASD: The Basics: Two D’s,
    [Show full text]
  • The History of Autism
    Furman University Furman University Scholar Exchange Narrative Documents 6-2-2015 The iH story of Autism Kieran A. Cook Alissa N. Willmerdinger Follow this and additional works at: http://scholarexchange.furman.edu/schopler-about Part of the Psychology Commons Recommended Citation Cook, Kieran A. and Willmerdinger, Alissa N., "The iH story of Autism" (2015). Narrative Documents. Book 1. http://scholarexchange.furman.edu/schopler-about/1 This Narrative Document is made available online by part of the Furman University Scholar Exchange (FUSE). It has been accepted for inclusion in Narrative Documents by an authorized FUSE administrator. For terms of use, please refer to the FUSE Institutional Repository Guidelines. For more information, please contact [email protected]. 1 The History of Autism Since the first description of autistic tendencies in the early 1800s, the definition and diagnostic criteria for autism have changed radically. The first Diagnostic Statistical Manual (DSM) categorized autism as a childhood subtype of schizophrenia (American Psychiatric Association, 1952) though autism was eventually separated from schizophrenia, becoming its own diagnosis. Over time autism evolved into a diagnostic spectrum by the time the DSM-5 was published in 2013. Autism is becoming more prevalent, and the diagnostic criteria and definition are likely to continue to change in the future. Early Conceptualizations of Autism In 1798 before the first use of the word autism, French physician Jean-Marc Gaspard Itard described Victor the Wild Boy of Aveyron, a young boy who was found after being isolated in the woods for 11 years, as being socially withdrawn in addition to having language and intellectual disabilities.
    [Show full text]
  • Biopolitics and Subjectivity: the Case of Autism Spectrum
    BIOPOLITICS AND SUBJECTIVITY: THE CASE OF AUTISM SPECTRUM CONDITIONS IN ITALY By M. ARIEL CASCIO Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology CASE WESTERN RESERVE UNIVERSITY May, 2015 2 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the thesis/dissertation of M. Ariel Cascio candidate for the degree of Ph.D.*. Committee Chair Atwood D. Gaines Committee Member Eileen Anderson-Fye Committee Member Lee Hoffer Committee Member Anastasia Dimitropoulos Date of Defense March 6, 2015 * We also certify that written approval has been obtained for any proprietary material contained therein. 3 Table of Contents List of Tables ...................................................................................................................... 7 List of Figures ..................................................................................................................... 8 Preface................................................................................................................................. 9 Acknowledgments............................................................................................................. 11 List of Acronyms .............................................................................................................. 13 Abstract ............................................................................................................................. 11 Introduction ......................................................................................................................
    [Show full text]
  • Why Anti-Vaccine Claims About NVICP Cases Are Wrong
    Minnesota Journal of Law, Science & Technology Volume 20 Issue 1 Article 11 8-7-2019 Using and Misusing Legal Decisions: Why Anti-Vaccine Claims about NVICP Cases Are Wrong Dorit Rubinstein Reiss UC Hastings College of Law Rachel Heap Follow this and additional works at: https://scholarship.law.umn.edu/mjlst Part of the Administrative Law Commons, Health Law and Policy Commons, and the Other Medicine and Health Sciences Commons Recommended Citation Dorit Rubinstein Reiss & Rachel Heap, Using and Misusing Legal Decisions: Why Anti-Vaccine Claims about NVICP Cases Are Wrong, 20 MINN. J.L. SCI. & TECH. 191 (2018). Available at: https://scholarship.law.umn.edu/mjlst/vol20/iss1/11 The Minnesota Journal of Law, Science & Technology is published by the University of Minnesota Libraries Publishing. Using and Misusing Legal Decisions: Why Anti-Vaccine Claims about NVICP Cases Are Wrong Dorit Rubinstein Reiss*and Rachel Heap† Abstract The question of whether vaccines cause autism spectrum disorder (autism, or ASD) has been extensively studied. Studies from different countries around the world, looking at millions of children in total, examined it and found no link. Despite this powerful evidence, the actions of a small group who fervently believe that vaccines cause autism may lead people to question the data. One tactic used to argue that vaccines cause autism is the use of compensation decisions from the National Vaccine Injury Compensation Program to claim such a link. This article demonstrates that not only does the nature of proof in the program make its decisions ill-suited to challenging the science but also that the cases used do not, in their content, support that conclusion.
    [Show full text]
  • Presenting Counter-Metaphors in the Study of the Discourse of Autism and Negotiations of Space in Literature and Visual Culture
    In constant encounter with one’s environment: Presenting counter-metaphors in the study of the discourse of autism and negotiations of space in literature and visual culture MA thesis Hannah Ebben Radboud University Nijmegen Research Masters Historical, Literary and Cultural Studies: Art and Visual Culture Thesis supervisor: dr. László Munteán Second reader: dr. Mitzi Waltz Number of words: 29767 1 Table of contents Introduction 4 Autism as a discourse 4 Autism and spatial metaphors 6 No ‘autism’ without spaces 7 From ‘autos’ to ‘atopos’ 9 Thesis structure 12 Case Studies 13 What is the discourse of autism in Rain Man and Extremely Loud and Incredibly Close? 15 My approach of the discourse of autism in speech and culture 16 Deviating from existing literature on cultural representations of autism 20 The use of autism-related words in Rain Man and Extremely Loud and Incredibly Close 22 Indexes of deviance in Rain Man and Extremely Loud 25 Conclusions 30 How do YouTube videos made by people who identify with the label of autism represent and negotiate subjectivity in space? 32 Deviations from autos in YouTube-video’s 33 Atopos and YouTube videos 37 What is a counter-metaphor? 42 Conclusions 44 How can the atopos counter-metaphor be integrated as a theoretical concept in the study of space in film and literature? 45 Atopos and the ‘misfit’; strengths and restrictions 47 How are negotiations through urban space in London represented in the literary works on autism Born on a Blue Day and The Curious Incident of the Dog in the Night-Time? 51 How are affinities with animals within negotiations of space depicted in mediated personal accounts of Dawn Prince-Hughes and Temple Grandin? 55 Conclusions 61 2 Conclusions 63 References 66 Appendix: Figures 72 3 Introduction My Research Master thesis inquires the discourse of autism and negotiations of space in literature and visual culture.
    [Show full text]