THE INCLUSION OF AUTISTIC CHILDREN IN THE CURRICULUM AND ASSESSMENT IN MAINSTREAM PRIMARY SCHOOLS by REBECCA WOOD A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY Autism Centre for Education and Research Department of Disability Inclusion and Special Needs School of Education College of Social Sciences University of Birmingham July 2017 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. Abstract Growing numbers of children are being diagnosed with autism in the UK and, against a backdrop of increased legislative and administrative provisions for educational inclusion, more autistic children are being educated in mainstream primary school settings. However, while there is evidence of the continued exclusion of autistic children, their performance in school tests seems poor, and their longer-term outcomes impoverished. Meanwhile, debates continue about the nature of autism itself. My project, informed by the social model of disability, theories of language and interpretation, inclusion, difference and aspects of feminism, aims to uncover the reasons behind the difficulties autistic children are experiencing in schools, by considering if, and how they are accessing the curriculum and tests. Employing a predominantly interpretative paradigm and a case study design, and based in five mainstream primary schools in England, the views of school staff, autistic children and their parents, as well as a sample of autistic adults, are incorporated. My findings show that by setting aside the association of autism with impairments, listening to autistic children, engaging with them meaningfully and enabling their own learning styles and particular dispositions to be manifest, educational inclusion, and positive outcomes for all, are much more likely to occur. Consequently, in these findings, there are important understandings for guiding practical pedagogy to enable inclusion. i for my boy ii Acknowledgements Thanks go to my PhD supervisors: Dr Karen Guldberg, Professor Gary Thomas and Dr Kerstin Wittemeyer. I’m also very grateful for the financial assistance provided by the School of Education in the form of a full scholarship. I’d like to thank all of my research participants, for their time, thoughts and insights, as well as their patience with the intrusions via phone, email, Skype or in person, especially when I was armed with a camcorder. Particular thanks go to the ten children: C1, C2, C3, C4, C5, C6, C7, C8, C9 and C10, who I cannot name, but whose individual personalities made them a pleasure to work with. May they all go on to have the wonderful futures they deserve. Other people who have helped and supported me in different ways through advice, friendship, conversation, insight, or simply by being a good bod, include Kabie Brook, Pat Butynska, Professor Graeme Douglas, Professor Peter France, Professor Nick Hodge, Professor Susan Hogan, Dr Damian Milton, Catherine Older, Professor Alan Rice, Dr Mag Stabilini Simone, Anya Ustaszewski and Zoe Wells. Important too, of course, is our wonderful dog Wanda, whose daily walks have enabled me to think, breathe and become expert in throwing sticks. However, my greatest thanks go to my loving husband, Dr Alan McIntosh, who has always treated my thesis as very important, often at the expense of his own work and leisure. iii Table of Contents Page Introduction 1 Chapter 1: Literature Review 6 Chapter 2: Conceptual Framework 51 Chapter 3: Methodology 84 Chapter 4: Research Methods 119 Chapter 5: Findings (questionnaire data) 143 Chapter 6: Findings (observation and interview data) 168 Theme 1: Support for Children 193 Theme 2: School Curriculum 211 Theme 3: Educational Priorities 227 Theme 4: Assessment and Tests 237 Theme 5: Communication 251 Theme 6: Interests 267 Theme 7: Inclusion and Exclusion 278 Theme 8: Descriptions of Autism 291 Chapter 7: Summative Discussion and Conclusions 305 Appendices ix iv List of Illustrations Figures Page Figure 1: Percentage of autistic children in state-funded primary, secondary and special schools in England, 2012 – 2014 16 Figure 2: Pupils with SEN as a percentage of all pupils in England, 2012 – 2014 17 Figure 3: Recruitment of Participants 110 Figure 4: Results of phone-calls to schools 111 Figure 5.1: Educational priorities of parents of children without SEND 147 Figure 5.2: Educational priorities of parents of children with SEND 147 Figure 6: Results (percentage) of parents’ structured question on school tests 150 Figure 7: Process of uploading and coding interview and observation data 169 Figure 8: Outlier 1 184 Figure 9: Outlier 2 188 Figure 10: Code mapping 191 Figure 11: Support for children 207 Figure 12: School Curriculum 223 Figure 13: Educational Priorities 233 Figure 14: Summary of impact of access to interests 275 Figure 15: An understanding of autism as the starting point to educational inclusion 310 Plate Plate 1: The living room of AA9 301 v List of Tables Tables Page Table 1: Key word database search results 14 Table 2: Phonics results 2012 – 2014 20 Table 3: Child and parent participants 114 Table 4: Summary of research instruments and dataset 126 Table 5: Methods of data collection for autistic children 128 Table 6: Summary of process of data collection 129 Table 7: School-based participants 143 Table 8: Results (RAW) of parents’ structured question on school tests 149 Table 9: Parents’ responses to open question about tests in school 152 Table 10: First cycle codes following final node management 171 Table 11: Reasons for providing support (school staff) 193 Table 12: Educational priorities: autistic adults and parents of autistic children 228 Table 13: Reasons why tests are difficult to access for autistic children 239 Table 14: Recommendations for adaptations/accommodations for tests 244 Table 15: Positive impact of accessing interests 268 Table 16: Reasons for spending time away from main cohort 282 Table 17.1: Autism is difficult to define 291 Table 17.2: Autistic children not as expected 292 Table 17.3: Autism is a spectrum condition 292 Table 17.4: Autism is a problematic condition 293 Table 17.5: Problems associated with autism 294 Table 17.6: Autistic people are different (strange) 296 Table 17.7: Autistic people are different (special) 297 Table 17.8: Perfectionism and attention to detail 299 Table 17.9: Autistic learning style 299 vi Terms and Abbreviations ASD: Autistic Spectrum Disorder ASC: Autism Spectrum Conditions Asperger’s: a form of autism (see ‘Terminology’, p. 5) LA: Local Authority NC: National Curriculum SA: School Action SA+: School Action Plus SATs: Standard Assessment Tests SEN*: Special Educational Needs SEND*: Special Educational Needs and Disabilities Statement of SEN**: Statement of Special Educational Needs EHCP**: Education, Health and Care Plan *’SEND’ replaced ‘SEN’ in 2014. Both acronyms are used in this thesis in accordance with the articles or reports referenced. In my discussion, I use the current term, SEND. **EHCPs started replacing Statements of SEN in 2014. vii List of Appendices Page 1. Appendices (1): Applications for ethical review A – C ix 2. Appendices (2): Representative sample* of research instruments: xx a. Recruitment letter (autistic adults) b. Semi-structured interview (class teacher) c. Participant information sheet (SENCOs) d. Child assent form e. Consent form (parents/carers) f. Focus group schedule (parents/carers) g. Letter to parents with no identified SEND 3. Appendices (3): List of references xxx *Due to the high number of research instruments (29), and the fact that there were further sub- divisions of these for individual participants and schools, it is not practical to include them all. However, I have included an example of each type of research instrument, as well as those highlighted in the main thesis: the latter incorporates examples of questionnaires. viii INTRODUCTION ‘All that we lack at birth, all that we need when we come to man’s estate, is the gift of education.’ (Rousseau, 1762/1993, p. 6) This quotation, which I included as part of my original, PhD research proposal written in 2012, serves as a reminder of my initial intentions when I decided to embark on a doctorate. While the completion of a thesis has felt at times like a Herculean – if not Sisyphean – task, the fundamental principle which has underpinned the entire endeavour has been that everyone can be enriched by education, and that this should be accessible on an equal basis to all children. Indeed, this tenet is enshrined in our international and national laws (Convention on the Rights of Persons with Disabilities [CRPD], 2006; Equality Act, 2010) and centres on the core notion of ‘inclusion’, a concept often cited, but highly contested, and subject to multiple interpretations (Norwich, 2008; Ravet, 2011). Meanwhile, as autism diagnoses are increasing (Baron-Cohen et al., 2009), so the numbers of autistic children in mainstream schools are growing too (Emam and Farrell, 2009). However, the impact of these developments on inclusive practices is unclear. Indeed, if there remains a presumption of mainstream inclusion for all children (Children and Families Act, 2014), evidence of the exclusion of autistic children, in particular, suggests a disconnect between this ambition and reality. For example, Batten at al. (2006) found not only that exclusions of autistic children from school were increasing, but that growing numbers were out of school for more than a year (p. 37). Similarly, Humphrey (2008) maintains that autistic children are more than 20 times more likely to be excluded from school than children without SEN.