A Thesis Submitted for the Degree of Doctor of Philosophy

A CASE STUDY WITH SPECIFIC REFERENCE TO THE ROLE OF PARENTS IN THE TEACHING AND LEARNING OF A RESIDENTIAL SPECIAL SCHOOL FOR CHILDREN WITH AUTISM

A Thesis submitted for the Degree of Doctor of Philosophy

By

Robert Hubbard

Department of Education

University of Brunel

26th June 2015

Acknowledgements

From the relative tranquillity of this ‘armchair’ stage of the process, looking back across the ten years since embarking upon this PhD it seems appropriate to view it as one would a journey. This journey involved traversing valleys, crossing plains and ascending mountains. It involved enduring storms, heatwaves, and the placidity of seasonal norms. There have been cancelled trains, worn-out boots, and numerous delightful ‘finds’. It’s been a journey therefore of challenges and tests, and at times I’ve felt somewhat overwhelmed. Like everything else worthwhile though, this PhD has been inspiring, even humbling. Perhaps the major feature is the companions I have encountered on the way. I have shared my life with many people, all of whom have helped me complete this doctoral thesis. As I sit here, reflecting on the passage of the decade, the gratitude that arises means I am pleased to be able to acknowledge them.

It’s sometimes been too easy to forget that at the core of this thesis are the profound challenges of children diagnosed with Autistic Spectrum Disorder (ASD) and Severe Learning Difficulties (SLD). Many of these children were also attended by severe and challenging ‘behaviours’ and numerous health comorbidities. One of the many hindrances such children face is the lack of understanding, on the part of those responsible for their educational provision, as to what is going to be most helpful for them to learn. This PhD is an attempt to offer meaningful research to guide the designers of such provision and therefore offer opportunities to children that they have hitherto been excluded from.

Kilnbarn School always sought to be something different in order to provide such a template. Like many such initiatives it began with a personal story, that of a mother who cared for a child with similar difficulties and yet whose life was left wanting for such informed help. She had the passion, vision, and dedication to bring Kilnbarn to life, to enable other children similarly affected to have their specific needs addressed in a unique way. To her and the children Kilnbarn cared for I am profoundly grateful.

Establishing such a facility as Kilnbarn obviously involves many others. I wish to thank the Trustees who supported the project and assisted in the study taking place. Staff at Kilnbarn also deserve praise. Embracing the Approach with such commitment and enthusiasm helped provide clear results from which to conclude with meaning and significance. Then there were the parents. In the midst of busy lives they prioritised completing questionnaires and sharing their own heartfelt journeys; their joys, frustrations and sadness of living with their children.

I also wish to thank my advisors and supervisors, Dr Deborah Jones and Prof Roy Evans. They have been with me each step of the way, challenging my thinking and pushing me to re-focus when the path became arduous. Latterly too, Professor Paul Cooper took significant steps to ensure I could make the final ‘leg’ with renewed spring in my step. I am grateful also to my good friend Padmakumāra, for his confidence in me and guidance in helping to bring this journey to a conclusion.

There are many others who have been indirectly involved and I am grateful for their advice, expertise, and practical support.

Finally, to my family and my wife Carol,

Thank you

Dedication

To my Grandchildren

Lee, Jack and Francesca

Abstract

Context: The purpose of this research was to examine if the educational approach (the Approach) adopted at Kilnbarn Residential Special School (the School) secured the developmental learning pathways for its pupils. All pupils were diagnosed with Autistic Spectrum Disorder (ASD), Severe Learning Difficulties (SLD) and many had single or multiple comorbid conditions. The research sought to understand how their parents could be substantive partners and co-creators in the design, modification, and implementation of the Approach. It was a unique feature of Kilnbarn’s Approach to fulfil the potential of parents to be co-creators and co-therapists in their child’s progress.

Objective: The case study became one of the instruments in which to test the School’s effectiveness in meeting the needs of its pupils. It enabled a review of the School’s methodology, curriculum and organisational practices. The Approach was designed to provide secure developmental learning pathways for its pupils, improving their quality of life and independence.

Method: The case study design, was chosen as it was considered the most appropriate research model. A Parents’ Questionnaire, distributed annually over 3 consecutive years (2004-6) was the evidential basis for this study. Interviews and collected data were used to analyse and evaluate the progress of the School through parents’ eyes.

Results: The combination of parents working with professionals to maximise the culture of “technical eclecticism” seems to be, in the light of this case study, best suited to the needs of children diagnosed with autism, SLD and comorbid conditions. The child should be immersed in a consistent approach across all areas of their life. Improvements in well-being, communication and joint action routines, sleep balance, a healthy diet, physical exercise, incontinence and behaviours was observed.

Conclusion The study identified that parents could be substantive partners and influencers in the design and modification of the Kilnbarn Approach. The Approach secured developmental learning pathways for its pupils and appeared to improve their quality of life. Parents as co-creators and co-therapists had regained ownership of their child’s quality of life, learning outcomes and personal development. From the experience and unique evidence of this case study schools should utilise and profit from the mass resource of their parents. It has been shown that the Kilnbarn Approach was, during the research, an effective and suitable intervention for the many children it served. It is hoped that further studies in this field will explore the concept of a “technical eclectic” approach that further validates and brings together interventions that are conceptually grounded and incorporates evidence-based focused intervention practices.

Table of Contents

Acknowledgements 2

Dedication 4

Abstract 5

Table of Contents 7

List of Figures 13

List of Tables 14

Glossary 15

Chapter 1 Introduction 18

1.1 The Pupils 21

1.2 The Staff 22

1.3 The Parents 22

1.4 The Approach 24

1.5 The Importance of the Study 25

1.6 The Research Questions 28

1.7 Ethical Considerations 29

1.8 Research Method and Design 30

1.9 Outline of the Thesis 35

1.10 A note on language and confidentiality 35

Chapter 2 Literature Review 37

2.1 Introduction 37

2.2 Approach to the Literature Review 39

2.3 The History of Autism 42

2.4 The Causes of Autism 46

2.5 The Prevalence of Autism 48

2.6 Diagnosis 51

2.7 Special Educational Needs 56

2.8 Young Adult Outcomes of Autism 61

2.9 Parental Stress 64

2.10 School-based Education Strategies 66

2.11 Designing the Approach 75

2.12 The TEACCH Approach (Treatment and Education of Autistic and related Communication Handicapped children) and the Culture of Autism 82

2.13 Daily Life Therapy (DLT) 91

2.14 Communication Programmes 94

2.15 Conclusion 96

CHAPTER 3 The Approach Adopted at Kilnbarn School 101

3.1 Introduction 101

3.2 Historical Perspective 103

3.3 Vision and Mission 107

3.4 Attitudes and Beliefs 108

3.5 Pre-requisites to Learning 109

3.6 Waking Day Curriculum 110

3.7 The Department for 14-19 year olds 112

3.8 Delivery of the Approach – Resolving Learning Deficits 113

3.8.1 Structured Teaching 113

3.8.2 Physical Organisation 114

3.8.3 Schedules 117

3.8.4 Individual Work System 120

3.8.5 Visual Structure 122

3.8.6 Routines 124

3.8.7 Learning Through Imitation 128

3.8.8 Reinforcers 128

3.8.9 Consistency 129

3.8.10 Physical Exercise 130

3.8.11 Line-up 132

3.8.13 The “At Rest Stance” 133

3.8.14 Group Instruction 133

3.8.15 Picture Exchange Communication System (PECS) 135

3.8.16 Sensory Integration 135

3.8.17 Managing Challenging Behaviours 136

3.8.18 Assessment 136

3.9 Organisation of the School Community 138

3.9.1 Staffing 138

3.9.2 Parents and community 140

3.9.3 Community Links and Integration 142

3.10 Move from 38-week to 44-week Provision 142

3.11 Medical and Therapeutic Provision 145

3.12 Psychology Provision 147

3.13 Conclusion 148

Chapter 4 Methodology 150

4.1 Introduction 150

4.1 Mixed Methods research 152

4.2 A Review of Grounded Theory 157

4.3 The Research Design 162

4.4 Research Methodology Rationale 165

4.5 Research Sample 167

4.6 The Process of Gaining Permission 167

4.7 Development of the data collection method 168

4.7.1 Development of the Questionnaire 170

4.7.2 Data Collection and Analysis in Grounded Theory 173

4.7.3 Creating the Interview Schedule 175

4.7.4 Being an Insider-researcher 176

4.7.5 Parent Focus Group 178

4.7.6 Creating Unobtrusive Measures (Documentary Evidence) 180

4.8 Conclusion 181

Chapter 5 Results – Exploring Parental Perceptions and Expectations 182

5.1 Introduction 182

5.2 Demography 185

5.2.1 Introduction 185

5.2.2 Pupil Profile 186

5.2.3 Diagnosis and Associated Conditions 192

5.2.4 Previous Provision Attended 194

5.2.5 Reason for Admission 196

5.2.6 Summary of findings – Demography 198

5.3 Communication 199

5.3.1 Introduction 199

5.3.2 Signing 201

5.3.3 Symbols 205

5.3.4 Receptive Language – Understanding Instructions 210

5.3.5 Tells you their Wants and Needs 215

5.3.6 Summary of findings – Communication 221

5.4 Life-long Independent Living 224

5.4.1 Introduction 224

5.4.2 Toileting 225

5.4.3 Feeding Skills 230

5.4.4 Change in Diet 234

5.4.6 Awareness of Physical Dangers and Being Safe in the Community 244

5.4.7 Summary of Findings: Life-long Independent Living 248

5.5 Relationships 252

5.5.1 Introduction 252

5.5.2 Relationship with Parents and Siblings 253

5.5.3 Relationships with Individuals Outside the Family Unit 258

5.5.4 Key Worker-Pupil Relationships 263

5.5.5 Summary of Findings: Relationships 264

5.6 Behaviours 266

5.6.1 Introduction 266

5.6.2 Stereotypic Repetitive Behaviours 268

5.6.3 Aggression and Tantrums 273

5.6.4 Summary of Findings: Behaviour 280

5.7 Parents’ Overall Perception of the Approach 282

5.7.1 Introduction 282

5.7.2 Overall Progress 284

5.7.3 Attraction to the programme at Kilnbarn School 291

5.7.4 Compliments and Complaints Received 2004-2006 297

5.7.5 Beneficial Elements 299

5.7.6 Parental Concerns 304

5.7.7 Conclusion 307

5.8 Conclusion 310

Chapter 6 Discussion 311

6.1 Introduction 311

6.2 The Main Findings in Relation to the Literature 312

6.3 The Main Findings in Relation to the Study 318

6.3.1 Communicating and Relating to Others 318

6.3.2 Life-long Independent Living 326

6.3.2.1 Toileting 327

6.3.2.2 Food preferences and factors influencing food selectivity 330

6.3.2.3 Sleeping Patterns 333

6.3.3 Behaviour Management 335

6.3.3.1 Stereotypic behaviours 337

6.3.3.2 Aggression and Tantrums 338

6.3.3.3 The effects of exercise on challenging behaviours 341

6.3.4 Recommendations 342

6.5 Summary of the Research Questions 346

6.5.1 Research Question 1 346

6.5.2 Research Question 2 347

6.5.3 Research Question 3 347

6.5.4 Research Question 4 348

6.5.5 Research Question 5 349

6.6 Suggestions for further research 351

6.7 Conclusion 352

Chapter 7 Conclusion 353

7.1 Introduction 353

7.2 Research Framework 356

7.3 Main Findings and Recommendations 359

7.3.1 Communicating and relating to others 360

7.3.2 Life-long Independent Living 361

7.3.3 Behaviour management 363

7.3.4 2005 Data Analysis 364

7.3.5 Parents as substantive partners and co-creators 366

7.3.6 Technical eclectic 367

7.4 Limitations of the Study 369

7.5 The Contribution of the Case Study to Research Literature 370

7.6 In Conclusion 371

References 373

Appendices 410

Appendix A 411

Appendix B 424

Appendix C 435

Appendix D 436

Appendix E 441

Appendix F 443

Appendix G 445

Appendix H 449

Appendix I 454

List of Figures

Figure 1 – Frequency of respondents 186

Figure 2 – Frequency or respondents by pupil cohort 187

Figure 3 – Frequency of respondents by key stage 188

Figure 4 – Diagnosis and associated conditions 192

Figure 5 – Previous education provision attended 194

Figure 6 – Reason for admission 196

Figure 7 – Signing 201

Figure 8 – Symbols 205

Figure 9 – Receptive language – understanding instructions 210

Figure 10 – Child tells you their wants and needs 215

Figure 11 – Child tells you their wants and needs – frequency of responses 220

Figure 12 - Toileting 225

Figure 13 – Feeding skills 230

Figure 14 – Changes in diet 234

Figure 15 – changes in sleeping patterns 239

Figure 16 – Awareness of physical dangers and being safe in the community 244

Figure 17 – Relationship with parents and siblings 253

Figure 18 – Relationship with individuals outside the family unit 258

Figure 19 – Factors influencing success in key worker-pupil relationship 263

Figure 20 – Stereotypic repetitive behaviours 268

Figure 21 – Aggression and tantrums 273

Figure 22 – Overall progress 284

Figure 23 – Attraction to the programme 291

Figure 24 – Compliments and complaints 297

Figure 25 – Beneficial elements 299

Figure 26 – Parental concerns 304

List of Tables

Table 1 – Estimated ASD Population figures for the UK and England based on the 2011 census 49

Table 2 – Interventions used at Kilnbarn School and their rankings. 80

Table 3 – Pupil data from parents who completed questionnaires in all three years of the study 190

Table 4 – School performance across the study – communication 221

Table 5 – Kilnbarn’s performance across the three year study: Life-long independent living 248

Table 6 – Kilnbarn’s perfomance across the three years of the study: relationships 264

Table 7 – school performance across the study – behaviour 280

Table 8 – state and independent school competitors from adjoining local and unitary authorities 293

Table 9 – Pupil data of cohort 15 – comparing P Level, pep3 with the parental perceptions of pupil progress 445

Table 10 – The Kilnbarn Approach: Findings, and recommendations to enhance the model 454

Glossary

Term Definition

ABA Applied Behavioural Analysis

AD Autistic Disorder

ADHD Attention Deficit Hyperactivity Disorder

ADI-R Autism Diagnostic Interview – Revised

ADOS Autism Diagnostic Observation Schedule

AED Antiepileptic drugs

ASC Autism Spectrum Condition

ASD Autistic Spectrum Disorder

ASDAN Award Scheme Development and Accreditation Network