The Views of Young People with an Autism Spectrum Disorder on Their Experience of Transition to Secondary School
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The views of young people with an autism spectrum disorder on their experience of transition to secondary school Susan Ackerley University of East London A thesis submitted in partial fulfilment of the requirements of the University of East London for the Professional Doctorate in Educational and Child Psychology April 2017 i Abstract The experience of transition from primary to secondary school is regarded as being particularly challenging for children who have a diagnosis of an autism spectrum disorder (ASD). The research in this area has identified that additional support during this period has been beneficial, however the dominant voice has been given to the parents and professionals. This qualitative exploratory study offers an opportunity for others to gain a greater understanding of the transition process through the constructs and perceptions of the child with an ASD. It also served to gain information around the development and use of skills that are associated with self-advocacy. The study involved five Year 7 children who had joined one of two mainstream secondary schools within a local authority in England. The data was gathered through the use of semi-structured interviews and analysed using inductive thematic analysis. The findings of the study indicated that a sense of belonging was valued by the participants and stressed the importance of having positive relationships. Whilst there were some signs that the children were able to express their needs to others, there was an assumption that the adults may take on the role as advocate. Relationships with peers were a perceived area of difficulty, with some children also reporting experiences of being bullied in both the primary and secondary settings. These difficulties were attributed to having an ASD or feeling they were different to their peers. There were also indications that the interaction of the systems around the child were pivotal to the success of the process of transition. ii The implications of this study suggest that there could be a role for educational psychologists in supporting the schools, families and the children with ASD. It is possible that working at a systems level could improve the development of skills that would enhance the ability to self-advocate; thus increasing self-awareness, resiliency and a sense of belonging. Keywords: Autism spectrum disorder, transition, self-advocacy, mainstream education iii THE VIEWS OF YOUNG PEOPLE WITH AN AUTISM SPECTRUM DISORDER ON THEIR EXPERIENCE OF TRANSITION TO SECONDARY SCHOOL Student Declaration University of East London School of Psychology Doctorate in Educational and Child Psychology Declaration I declare that while registered as a research degree student at UEL, I have not been a registered or enrolled student for another award of this university or of any other academic or professional institution I declare that no material contained in the thesis has been used in any other submission for an academic award I declare that my research required ethical approval from the University Ethics Committee (UREC) and confirmation of approval is embedded within the thesis. Susan Ackerley Signature: .................................................... Date: 28th April 2017 iv Acknowledgements First of all I would like to thank the children who participated in this study for your willingness to share your experiences that have developed my understanding of an aspect of your journey through life. I would also like to thank your schools for collaborating with me to and creating a space for us to work together. Dr Helena Bunn, you have been incredible in sticking with me and giving encouragement through some very difficult times. I am indebted to you for your guidance and support throughout the doctoral programme, particularly in the keeping me on track during the writing of this thesis. I would also like to thank my friends and family, without them this I would never have got to this point. Tim you have always been my rock, supporting me even when this increased the pressure on you. Lottie, Chloe and Katie you have all encouraged me to believe that I could do this, during the times when it seemed to be an impossible goal to me. Jimmy and Lydia, you probably don’t realise just how important it has been to have you around throughout this time of study. I love you all and I am looking forward to enjoying more time together again. Lastly I would like to thank my aunt for her unwavering support, sadly she will not see the final piece, but I would like to dedicate this work to her. v Table of Contents Chapter 1: Introduction …..……………………………..………………………. 1 1.1 Overview of the Chapter ………………………………..………….………….. 1 1.2 Definitions of Terminology of the Key Concepts …….................…….……. 1 1.2.1: Autism Spectrum Disorder (ASD) ……………..………………...…….. 1 1.2.2: Transition ………………………………...……………..…………..……. 2 1.2.3: Self-advocacy ………………………..…………………………….…..... 2 1.3 The National Context and Background to the Research …………..….…… 3 1.3.1 Educational Provision for Pupils with an ASD ……………………....... 3 1.3.2 Involving Children and Young People in Transition Planning…….….. 7 1.4 The Local Context and Background to the Research ………...................... 9 1.4.1 Educational Provision for Pupils with an ASD …….…………….…….. 9 1.4.2 Transition between Primary and Secondary Schools ………………...10 1.5 Researcher’s Position …………………………………….…………………... 11 1.6 Research Rationale ………………….……………………………………..… 13 Chapter 2: Literature Review ……………………………………...…………… 15 2.1 Overview of the Chapter ……………………………..………………………. 15 2.2. The Key Areas of Research ……..………………..……………………….... 15 2.2.1 Systematic Literature Search ……….…………………………...….16 2.2.2 ASD and Transition to Secondary School ………………….……...17 2.2.3 Self-advocacy and Transition ………………………………………. 25 2.2.4 Self-advocacy and ASD …………………………………………….. 28 2.2.5 Self-advocacy, ASD and Transition ……………………………….. 33 2.3 Conclusions, Implications and Development of Research Questions ..….. 35 Chapter 3 Methodology……...…………………………………………………….37 vi 3.1 Overview of Chapter …………………………………………………………37 3.2 Conceptual, Theoretical and Epistemological Framework……………….37 3.2.1 Ontological Position ………………………………………………….40 3.2.2 Epistemology and Theory ……………………………….…………..41 3.3 Purpose of the Research ……………..……………………………………. 45 3.4 Research Design ……………………………………………………………. 46 3.4.1 Research Techniques…………………………………………………48 3.4.2 Interviews to Elicit the Views of Individuals ......……………………49 3.5 Participants …………………………………………………………………....52 3.6 Ethical Considerations ………………………………………...……………. 55 3.6.1 Protection from Harm …………………………………………………56 3.6.2 Consent ………………………………………………………………..57 3.6.3 Anonymity and Confidentiality …………….…………………………57 3.6.4 Data Protection ………………………..….……………………..…... 58 3.7 Procedures ………...……………………………………………………..……..59 3.8 Study ………………..……………………………………………………...…… 62 3.9. Data Collection ...……………………………………………………………….62 3.10 Data Analysis ..………………………………………………………...………64 3.10.1 Thematic Analysis ………………………………..….………….…. 65 3.11 Credibility and Trustworthiness ……………………………………. 68 3.11.1 Reflexivity ………………………………………………………….. 70 3.12 Summary ………..…………………………………………………...………. 71 Chapter 4: Findings ..…………………………………………………………......72 4.1 Overview of Chapter ..………………………………………………………… 72 4.2 Themes and Subthemes ..………………...…………………………………. 72 4.3 Theme 1: Adjusting to Secondary School ………..……………..…………. 73 4. 3.1 Subtheme 1.1 Preparatory Activities ……..……………..………. 73 4.3.2 Subtheme 1.2: Separating from Primary School ……..………… 77 vii 4.3.3 Subtheme 1.3: Starting Secondary School ……………………….. 79 4.3.4 Subtheme 1.4: Overview of Secondary School ………….………. 80 4.3.5 Overview of Theme 1: Adjusting to Secondary School ……......... 82 4.4 Theme 2: ASD Awareness ……………………………………………………. 83 4.4.1 Subtheme 2.1 Self-awareness and Perception of own ASD ….… 83 4.4.2 Subtheme 2.2 Family Support and Understanding of the Child’s ASD ………………………………………………………….…… 85 4.4.3 Subtheme 2.3 Staff Understanding of ASD and Adjustments …. 87 4.4.4 Subtheme 2.4 Peers’ Understanding of ASD and Ability to Support ………………………………………………..………….… 88 4.4.5 Theme 2 Overview …………..….………………………………..… 89 4.5 Theme 3: Control and Responsibility ………..…………………………….. 90 4.5.1 Subtheme 3.1 Child’s Ability to Resolve Issues …………..…….. 91 4.5.2 Subtheme 3.2 Parent as Advocates ……………………………… 92 4.5.3 Subtheme 3.3 Child’s Ability to Request Support at School …… 93 4.5.4 Subtheme 3.4 Adults Supporting Emotional Wellbeing ………… 94 4.5.5 Subtheme 3.5 Child’s Dependence on Support to Complete Tasks……………………………………………………. 96 4.5.6 Overview of Theme 3: Control and Responsibility ..…………….. 98 4.6 Theme 4: Interaction with Others ……………………………………………. 98 viii 4.6.1 Subtheme: 4.1 Bullying …………………………………………..….99 4.6.2 Subtheme: 4.2 Interaction and Relationships with Staff ………. 101 4.6.3 Subtheme: 4.3 Relationships and Interactions with Family Members ……………………………………………..….. 104 4.6.4 Subtheme: 4.4 Peer Relationships at School ……………….… 106 4.6.5 Overview of Theme 4: Interactions with Others …..…………... 107 4.7 Summary of Findings ………………………………………………………. 108 Chapter 5 Discussion …………………………………………………………. 110 5.1 Overview of Chapter ……………………………………………………….. 110 5.2 A Review of the Research Aim and Key Findings ………..…………….. 110 5.2.1 Review of Research Question One Findings ………………… 111 5.2.2 Review of Research Question Two Findings ………………… 118 5.2.3 Summary and Synthesis of Research Questions One and Two Findings ……………………………………………..……….. 121 5.3 Critical Review of the Research ……………..….……………………….. 128 5.3.1 Strengths of the