A study of the experiences and perceptions of parents of Black and Minority Ethnic pupils statemented with autism in relation to the educational support provided for their children and for themselves. by Sheladevi Nair A thesis submitted to Cardiff Metropolitan University in partial fulfilment of the degree of Doctor of Philosophy School of Education Cardiff Metropolitan University May 2015 ABSTRACT This study investigates the experiences and perceptions of parents of Black and Minority Ethnic (BME) pupils statemented with autism of the support they receive for their child in education and for themselves. These perceptions are explored alongside the views of stakeholders in education who work to support these pupils and parents. The study expands upon the work of Perepa (2008) who investigated the cultural influences on the understanding of appropriate social behaviour by BME parents of children within the autism spectrum in a London borough. Since then there has been minimal research on BME parents’ experiences of having a child with autism in education, so this study addresses a gap in research. A qualitative case study approach was adopted using in-depth interviews with participants from one selected local authority in Wales. An interpretivist approach was used to gain an understanding of the researched phenomena within a cultural context. The data was managed for thematic analysis using the qualitative analysis software tool, NVivo. The findings reveal that BME parents receive support from the providers within education rather than from their own ethnic communities. They show a preference for mainstream education, although evidence here suggests that there are fewer specialist resources in these schools compared to special schools. The findings also reveal that their culture, religion, education and socio-economic backgrounds influence BME parents’ ability to access and utilise educational support services. They feel that their ethnicity and cultural needs are not always taken into account in the ‘culturally-blind’ system which appears to be implemented within education, and their expectation is that society should provide them with more support. It is anticipated that these findings would be taken into account by policy makers and contribute to further research in Wales. ii DECLARATION This work has not previously been accepted in substance for any degree and is not being concurrently submitted in candidature for any degree. Signature of author ..................................................... Date .......................................................................... STATEMENT 1 This thesis is the result of my own investigations, except where otherwise stated. Other sources are acknowledged by citations giving explicit references. A list of references is appended. Signature of author .................................................... Date ............................................................................. STATEMENT 2 I hereby give consent for my thesis, if accepted, to be made available for consultation within the university library and for photocopying or for inter-library loan for the purposes of consultation and for the title and summary to be made available to outside organisations. Signed ..................................................................... Date ......................................................................... iii DEDICATION To all parents who are ‘living with autism’ Despite the amount of care and love that these parents provide for their child with autism, they face many difficulties. It is recognised that supporting parents and their children in education will assist in lifting the strain that is felt by them in their lives. Every time the mind gets ‘disturbed’ it loses its stamina. But as it gains in poise and equilibrium, it is progressing towards serenity – Santi (peace). The Bhagavad Gita: Chapter 16, page 782 iv ACKNOWLEDGEMENTS I am deeply grateful to the parents who participated in this study for sharing their experiences with me since this study would not have been achievable without these individuals. I am immensely thankful for their time and their trust. I owe a debt of gratitude to my director of studies, Dr Sian Rhiannon Williams, and my supervisor, Dr Cheryl Ellis at Cardiff Metropolitan University who stuck by me for the last four and a half years. Their constant guidance, commitment, dedication, patience and constructive criticism have proved a driving force in the production of this thesis. I wish to also thank Professor Gary Beauchamp for his assistance and encouragement on the use of the analysis software, NVivo which was used in my work. I am also grateful to the key personnel within the selected local authority and to the university tutors at Cardiff Metropolitan University who helped me in gaining the contacts for the sample of my study. I would particularly like to thank my dearest husband, Rawindaran, who generously funded my studies and never questioned the time spent on this thesis. His belief in me and the constant encouragement, gave me the determination to persevere, although I have not been the easiest person to live with. I have no words to describe my gratitude to him without whose inspiration and belief, I would never have thought this qualification possible. My heartfelt gratitude to my mother, my late father and my late father and mother-in-law who gave me their blessings prior to the study and who started me off with a positive environment towards making this journey a memorable and fulfilling one. My sincere appreciation goes to every member of my family for their support and encouragement. Thanks also to all my dearest friends and their families at Bhaktidham Wales for the spiritual guidance and encouragement during this journey of mine. Dhanyawad! A special thanks to my darling daughters Nisha and Nadia, son Janardhan Suraj, son-in- law Dr. Rajesh Kumar Chelliah and grandson Jaden Rohan for their support and encouragement while I worked on my thesis. Thank you to my dear son who proofread some of my work and to my dearest grandson who lifted my spirits during the days when I felt low and disheartened. v TABLE OF CONTENTS ABSTRACT .......................................................................................................................... ii DECLARATION ................................................................................................................. iii DEDICATION ..................................................................................................................... iv ACKNOWLEDGEMENTS ................................................................................................... v TABLE OF CONTENTS ..................................................................................................... vi LIST OF MAPS, TABLES AND FIGURES ......................................................................... x ABBREVIATED TERMS .................................................................................................. xii Chapter One: Introduction...................................................................................................... 1 1.0 Introduction ...................................................................................................................... 2 1.1 Terminology used in the study ......................................................................................... 3 1.2 Aims of the study ............................................................................................................. 4 1.3 The background and position of the researcher ............................................................... 6 1.4 Educational needs of pupils with autism .......................................................................... 9 1.5 The context of the study ................................................................................................. 10 1.5.1 Data on BME pupils in education within the selected LA in Wales ....................... 15 1.6 Theoretical framework for the study .............................................................................. 16 1.7 SEN on inclusion and support policies in the UK.......................................................... 17 1.7.1 Educational provision recognising BME community ............................................. 22 1.8 The rationale for the study ............................................................................................. 23 Chapter Two: Literature Review ......................................................................................... 24 2.0 Introduction .................................................................................................................... 25 2.1 BME parents and autism ................................................................................................ 26 2.1.1 Review of studies on support services for parents .................................................. 26 2.1.2 The role of parents ................................................................................................... 29 2.1.3 Parents’ responses to diagnosis of autism ............................................................... 31 2.1.4 Relevance of cultural influence for parents ............................................................. 32 2.1.5 The influence of religion in the context of autism as a disability ........................... 36 2.2 Parental participation with support services .................................................................