Daghustani, Wid Hussain (2017) Journeys of mothers of adolescents with autism in Bahrain and Saudi Arabia: issues of justice? PhD thesis. http://theses.gla.ac.uk/8578/ Copyright and moral rights for this work are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This work cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Enlighten:Theses http://theses.gla.ac.uk/ [email protected] Journeys of Mothers of Adolescents with Autism in Bahrain and Saudi Arabia: Issues of Justice? By Wid Hussain Daghustani MA Special Education (Autism) A Thesis submitted in Fulfilment of the Requirement for the Degree of Doctor in Philosophy (PhD) School of Education College of Social Science University of Glasgow May, 2017 i The path towards this thesis has been circuitous. Only because of the strong, courageous and gentle soul of each mother who participated in this study, and who taught me that so much could be done with so little, has this work become a reality. I dedicate this thesis to you all. ii Abstract Autism, a lifelong developmental disability1, can have a significant impact on parents, particularly mothers who are often the primary care takers of their children in countries in which understanding of and resources for young people with autism are limited. This study explores the lives of mothers of adolescent sons with autism in Bahrain and Saudi Arabia. I focus on the issues that arise in a strictly sex segregated society, Saudi Arabia, and ask how living in such a culture affects the capacity of mothers to support and care, and to be helped to support and care, for their sons. I consider the experiences of these mothers in contrast with those of mothers from Bahrain which, though still a traditional society, has a more progressive approach towards women who fully participate in society and have almost the same rights as men, at least in law. In a country like Saudi Arabia, mothers struggle with the complexities of autism in a society that often treats them as inferior simply because of their sex. In Bahrain, even though mothers struggle with autism and a lack of support, the social and political structures of the country are different. Bahraini mothers, for example, do not have to contend with male guardianship laws or a prohibition on driving, both of which, I argue here, extensively affect their capacity to care for their sons. In this thesis, I apply Nussbaum’s Capability Approach to questions of social justice for mothers of adolescents with autism. The Capability Approach is an evaluative framework that assesses individuals’ well-being, exploring what a person can actually do and be when given opportunity freedoms. In a just society, according to Nussbaum (2011), every individual is entitled to dignity and respect and should be provided with appropriate threshold levels of functioning in ten central human capabilities which include bodily integrity; senses imagination, and thought; emotions, and affiliation. By engaging in conversations with 17 mothers, 10 in Saudi Arabia and seven in Bahrain, this study starts to tell the stories of these seventeen mothers. In their own words2, the mothers I interviewed share their journeys with autism, discuss available social support, both formal and informal, and refer to and sometimes explicitly describe the cultural norms and regulations they encounter. To analyse the interview data, I use thematic analysis and Nussbaum’s Capability Approach to explore mothers’ experiences. While I acknowledge that this is a small-scale study and I make only limited claims to generalisability or representativeness, the results of 1 I discuss terminology in Chapter One but this term is taken from the UK National Autistic Society definition at http://www.autism.org.uk/about/what-is/asd.aspx 2 Translated from Arabic to English as explained in Chapter Four. iii my analysis indicate a significant lack of support, both informal from husbands, families and friends, and formal from hospitals and schools. Most mothers experienced difficulties dealing with autism, physically and/or emotionally. With respect to the Capability Approach, most Saudi mothers reported capability failure, largely because of the marginalisation of those with autism and gender discrimination. These capabilities are compromised because Saudi mothers live under laws which, I claim, promote inequality and injustice. With major gender inequality, mothers in Saudi, I argue, suffer greatly and their capabilities are jeopardised. By contrast, my data indicates that Bahraini mothers’ capability development is less inhibited by the social and political arrangements of their country than applies to women in Saudi Arabia. This study draws out the significant differences in the experiences of women in two countries that are geographically separated only by a bridge but whose norms and conventions are radically different. I argue that in order to promote social justice for women, it is important to see the situation through their eyes and to research their experiences in ways that allow a deep understanding of their struggles in their societies. I conclude that it is vital to acknowledge and value the roles of mothers caring for their children with autism within their communities, and to develop and ultimately implement policies that allow their own capabilities and those of their children to flourish. iv Contents Page Abstract iii Contents v Appendices, Tables ix Acknowledgments x Author’s declaration xi Chapter One: Introduction and Context 1.1 Introduction 1 1.2 Research Rationale 2 1.3 Background to the Research 4 1.4 Nussbaum’s Capability Approach 6 1.5 Adaptive Preferences 13 1.6 Purpose of the Research and Pre-Research Expectations 15 1.7 Research Methodology 16 1.8 Research Questions 18 1.9 Research and Emotions 19 1.10 To Sum Up and Move Forward 21 Chapter Two: The Two Kingdoms: Saudi Arabia and Bahrain 2.1 Introduction 23 2.2 The Two Kingdoms, Saudi Arabia and Bahrain 23 Saudi Arabia, the Beginning 25 Women in Saudi Arabia and Bahrain 28 A Woman’s Right to Education in Saudi Arabia and Bahrain 29 Employment of Women, Saudi Arabia and Bahrain 31 The Male Guardianship Law 33 Other Restrictions on Saudi Women 35 Sex Segregation 36 Saudi Society and Change 38 Saudi and Bahrain Women’s Achievements 41 Resistance to Change 45 Saudi Arabia and Bahrain, the Differences 48 2.3 To Sum Up and Move Forward 51 v Chapter Three: Autism and Social Support 3.1 Introduction 56 3.2 Autism Spectrum Disorder (ASD) 56 Terminology 56 Definitions of Autism 58 Characteristics of Autism 64 Early Diagnosis and Intelligence 67 Causes of Autism 69 Adolescents with Autism 71 Autism and Stress 74 Social Support 76 3.3 Autism: Saudi Arabia and Bahrain 79 3.4 To Sum Up and Move Forward 81 Chapter Four: Research Methodology 4.1 Introduction 83 4.2 Research Objectives 84 4.3 Research Design 84 Qualitative Research and the Interpretive Approach 84 Good Research? 87 Interviews as a Research Tool 88 4.4 Research Questions 90 4.5 Ethical Considerations 93 Sensitive Research 97 4.6 Research Procedures 98 The Participants 98 Contacting Participants in Saudi Arabia 100 Contacting Participants in Bahrain 100 The Interviews 103 4.7 Data Analysis 105 Converting Conversations: Translation and Extract Transcription Process 105 Thematic Analysis 107 The Capability Approach 109 4.8 To Sum Up and Move Forward 109 vi Chapter Five: Autism - A Thematic Analysis 5.1 Introduction 110 5.2 Autism as a Broad Theme in Saudi Arabia and Bahrain 110 Phase One: Pre-diagnosis Phase Including Misdiagnosis 112 o Mothers’ Awareness 112 o Mothers’ Affective Responses 116 o Mothers’ Interpretations of their Sons’ Behaviours 117 o Mothers’ Behavioural Responses 117 o The Misdiagnosis Phase 119 Phase Two: Immediately Following the Diagnosis of Autism 120 o Mothers’ Awareness 120 o Mothers’ Affective Responses 121 o Mothers’ Behavioural Responses 123 Phase Three: Post Diagnosis Including Manifestations of Autism and Adolescence Phase 125 o Manifestations of Autism 125 o The Adolescence Phase 130 . Mothers’ Awareness 131 . Mothers’ Affective Responses 133 . Mothers’ Interpretations of Their Sons’ Behaviour 135 . Mothers’ Behavioural Responses 135 5.3 Summary 137 Chapter Six: Social Support - A Thematic Analysis 6.1 Introduction to Social Support as a Broad Theme in Saudi Arabia and Bahrain 139 6.2 Social Support - Informal Social Support 141 Spouse Support 141 o Mothers’ Affective Responses 149 o Mothers’ Behavioural Responses 150 Family and Friends’ Support 151 o Mothers’ Affective Responses 154 o Mothers’ Behavioural Responses 155 6.3 Social Support – Formal Social Support 156 Hospital Support 156 School and Autism Centre Support 160 vii Other Institutions Support 165 Societal Support 168 6.4 Summary 171 Chapter Seven: The Capability Approach 7.1 Introduction 173 7.2 The Participants and the Ten Central Human Capabilities 168 7.3 Summary 188 Chapter Eight: Conclusions and Reflections 8.1 Introduction 189 8.2 To Synthesise 190 8.3 Research Results and Discussion 194 Mothers and Autism 194 Mothers and Social Support 196 o Informal Support 196 o Formal Support 197 The Stories of Mothers and the Capability Approach 198 The Future 200 8.4 Challenges and Limitations of the Research 201 8.5 Future Work 204 8.6 Impact of the Thesis 205 8.7 Towards an Ending 209 References 211 viii Appendices 1. Mothers’ Stories in Saudi Arabia and Bahrain 235 2.