Autism Diagnosis As Social Process
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Drawing a line in the sand: Autism diagnosis as social process Submitted by Jennie Hayes to the University of Exeter as a thesis for the degree of Doctor of Philosophy in Medical Studies December 2019 Submitted by Jennie Hayes, this thesis is available for Library use on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement. I certify that all material in this thesis which is not my own work has been identified and that no material has previously been submitted and approved for the award of a degree by this or any other University. Signature……………………………………………………………………………… 1 2 This PhD project was funded by a Wellcome Trust Investigator Award ‘Exploring Diagnosis’ 3 4 Abstract This PhD explored how clinicians make diagnostic decisions about autism in secondary care. Symptoms of autism are considered to be widely heterogeneous, meaning that decisions about where the diagnostic threshold lies can be challenging. Diagnosis in the UK is usually undertaken by multi- disciplinary teams (MDTs) and can involve numerous stages of decision-making in different contexts across an extended time period. The process of diagnosis is complex and multi-faceted, and can be particularly challenging when cases are considered ‘borderline’ or where there are coexisting conditions. A qualitative approach was used in four studies. A narrative review of twenty- one clinical guidelines was conducted (study one); observation of eighteen assessment team meetings on four sites was undertaken (studies two and three); and sixteen interviews were conducted with clinicians engaged in autism diagnosis (study four). The narrative review found that guidelines varied in recommendations for assessment procedures and provided no guidance as to how MDT meetings should be facilitated. Guidelines highlighted utilising clinical judgement, valuing experience and dealing with contradiction and uncertainty. A thematic analysis of observation data found that clinicians produce objective accounts through their situated practices and perform diagnosis as an act of interpretation, affect and evaluation to meet the institutional demands of the diagnostic setting. A discursive psychology analysis explored interaction in the team meetings and found a four-part narrative structure utilised to account for and explain potential contradictory evidence and manage uncertainty. A preliminary thematic analysis of the interview study found that clinicians value working collectively to enable them to feel confident about difficult decisions. Clinicians appear to be engaged in a ‘push/pull relationship’ with diagnostic decision-making which involves resisting or accepting patient and family wishes; working within time and resource constraints; and consideration of the potential positive and negative consequences of the diagnosis. This PhD offers an empirical contribution to the nature of practical uncertainty work in healthcare. Diagnosticians are charged with the burden of uncertainty in 5 autism diagnosis, and find strategies to manage this dilemma to find the best outcomes for their patients. Uncertainty is readily displayed in inter-clinician discussion, however, clinicians are compelled to deliver a clear and certain diagnostic outcome for patients, families and other professionals. The result of this translation from uncertainty to certainty is the construction of a condition whereby it is possible to be both part of a spectrum as well as categorically defined. Overall, this PhD contributes to a growing field of scholarship on autism diagnosis and provides insight into our understanding of diagnosis as a social process. 6 Table of Contents ABSTRACT 5 LIST OF FIGURES 14 LIST OF TABLES 14 DEFINITIONS AND ABBREVIATIONS 15 ACKNOWLEDGEMENTS 17 INTRODUCTION AND OVERVIEW OF THESIS 19 INTRODUCTION 21 THE PHD STUDY 23 OVERARCHING AIMS 24 RESEARCH QUESTIONS 25 THEORETICAL APPROACH 25 OVERVIEW OF THESIS CHAPTERS 26 A NOTE ON TERMINOLOGY 28 CHAPTER ONE: MEDICAL FRAMING OF DIAGNOSIS 31 1.1 INTRODUCTION AND OVERVIEW OF CHAPTER 33 1.2 WHAT IS DIAGNOSIS? 33 1.2.1 Diagnosis and biomarkers 35 1.2.2 Critiques of biomarker development 36 1.2.3 Diagnosing psychiatric conditions 37 1.3 WHAT IS AUTISM? 39 1.3.1 The meaning of autism to different actors 41 1.3.2 Prevalence 42 1.3.3 Co-occurrence with other conditions 45 1.3.4 Aetiology and heritability 45 1.3.5 Refrigerator mothers 47 1.4 FROM CHILDHOOD SCHIZOPHRENIA TO AN AUTISM SPECTRUM 48 1.4.1 Current classification of autism 50 1.4.2 Diagnosis in England 53 1.5 PATHWAYS TO AUTISM DIAGNOSIS 57 1.5.1 Autism diagnostic pathway for children 57 1.5.2 Autism diagnostic pathway for adults 60 1.5.3 Diagnostic tools 62 1.6 CONCLUDING COMMENTS 67 7 CHAPTER TWO: SOCIAL FRAMING OF DIAGNOSIS 69 2.1 INTRODUCTION AND OVERVIEW OF CHAPTER 71 2.2 SOCIOLOGY OF DIAGNOSIS 71 2.3 JUTEL’S SOCIAL MODEL OF DIAGNOSIS 73 2.4 LUMPING AND SPLITTING 75 2.5 DIAGNOSIS IN PRACTICE: CLASSIFICATION (DIAGNOSIS-AS-CATEGORY) 76 2.6 DIAGNOSIS IN PRACTICE: WHO GETS ASSESSED? (DIAGNOSIS-AS-PROCESS) 79 2.7 DIAGNOSIS IN PRACTICE: STIGMATISATION (CONSEQUENCE OF DIAGNOSIS) 81 2.8 THE SOCIAL FRAMING OF AUTISM DIAGNOSIS 82 2.8.1 Introduction 82 2.8.2 Autism: Diagnosis-as-category 84 2.8.3 Autism: Diagnosis-as-process 86 2.8.4 Autism: Consequence of diagnosis 97 2.9 CONCLUDING COMMENTS 103 CHAPTER THREE: THE CONSTRUCTION OF AUTISM 105 3.1 INTRODUCTION AND OVERVIEW OF CHAPTER 107 3.2 DEFINING NORMAL 107 3.2.1 Autism and normality 109 3.2.2 Technological advances 112 3.2.3 Defining normal in ‘physical’ conditions 113 3.3 MEDICALISATION 114 3.3.1 Shifting concepts of medicalisation 114 3.3.2 Medicalisation as interactional 115 3.3.3 Drivers of medicalisation 116 3.3.4 Consequences of medicalisation 119 3.4 SHIFTING CONCEPTS OF AUTISM 121 3.4.1 The autism epidemic and call for action 123 3.4.2 The Neurodiversity movement 124 3.5 HACKING’S LOOPING AND ‘MAKING UP PEOPLE’ 125 3.6 CONCLUDING COMMENTS 128 CHAPTER FOUR: MAKING DIAGNOSTIC DECISIONS 129 4.1 INTRODUCTION AND OVERVIEW OF CHAPTER 131 4.2 KNOWLEDGE AND UNCERTAINTY 131 4.2.1 The scientific method 131 4.2.2 Critiques of the scientific method 132 4.2.3 Uncertainty in medical practice 133 4.2.4 Practical reasoning and experience 134 8 4.2.5 Autism as an uncertain entity 138 4.3 NARRATIVE CASE-BUILDING 139 4.3.1 Narrative and medicine 139 4.3.2 What is a narrative? 140 4.3.3 Atkinson and case presentation 142 4.3.4 Narrative in autism diagnosis 144 4.4 DECISION-MAKING IN TEAMS 148 4.4.1 Interaction in teams 149 4.4.2 Power and epistemic authority 150 4.4.3 Clinician interaction in autism assessment 151 4.5 CONCLUDING COMMENTS 152 CHAPTER FIVE: METHODS AND APPROACH 153 5.1 INTRODUCTION AND OVERVIEW OF CHAPTER 155 5.1.1 Rationale for PhD 155 5.1.2 Study Design 158 5.2 RECRUITMENT AND SELECTION OF ASSESSMENT SERVICES 159 5.2.1 Recruitment 159 5.2.2 Inclusion criteria 160 5.2.3 Sampling, saturation and information power 161 5.2.4 Site details 162 5.3 ETHICS AND CONSENT 165 5.3.1 Participant Consent 166 5.3.2 Patient Consent 166 5.3.3 Anonymity and Confidentiality 166 5.4 THEORETICAL PERSPECTIVE 167 5.4.1 Social constructionism 167 5.4.2 Social constructionism and relativism 168 5.5 DISCURSIVE PSYCHOLOGY ANALYSIS AND SOCIAL CONSTRUCTION 169 5.5.1 Discursive psychology 169 5.5.2 Discourse in medical settings 170 5.5.3 Key concepts in discursive psychology 171 5.6 INTRODUCTION TO PHD STUDIES 174 5.7 STUDY ONE: REVIEW OF CLINICAL GUIDELINES FOR AUTISM DIAGNOSIS 175 5.7.1 Purpose of study and methodological approach 175 5.7.2 Research Question 175 5.7.3 Data Collection 175 5.7.4 Analysis and definition of social factors 175 5.8 SOCIAL FACTORS IN DIAGNOSIS: A CONCEPTUAL SHIFT 176 9 5.9 STUDIES TWO AND THREE: TEAM MEETING OBSERVATION 178 5.9.1 Purpose of study and methodological approach 178 5.9.2 Research Question 179 5.9.3 Data Collection 179 5.9.4 Analytic Overview 180 5.9.5 Analytic Steps 181 5.10 STUDY FOUR: INTERVIEW STUDY 186 5.10.1 Purpose of study and methodological approach 186 5.10.2 Research Question 186 5.10.3 Data Collection 186 5.10.4 Analysis 188 5.11 PERSONAL REFLECTION AND POSITION 189 INTRODUCTION TO ANALYTIC CHAPTERS 191 OVERVIEW AND INTRODUCTION 191 UNDERSTANDING THE DATA 191 STATEMENT OF CANDIDATE’S CONTRIBUTION TO CO-AUTHORED PAPERS 192 INTRODUCTION TO CHAPTER SIX 193 CHAPTER SIX: CLINICAL PRACTICE GUIDELINES FOR DIAGNOSIS OF AUTISM SPECTRUM DISORDER IN ADULTS AND CHILDREN IN THE UK: A NARRATIVE REVIEW 195 ABSTRACT 197 6.1 INTRODUCTION 199 6.2 SOCIAL FACTORS 200 6.3 SOCIO-ECONOMIC AND CULTURAL FACTORS 200 6.4 BIOMARKERS IN AUTISM DIAGNOSIS 201 6.5 PURPOSE OF THE REVIEW 202 6.6 METHOD 202 6.6.1 Scoping search 202 6.6.2 Inclusion and exclusion criteria 202 6.6.3 Identification of CPGs 204 6.6.4 Study selection 205 6.6.5 Data extraction 207 6.6.6 Analysis of social factors 207 6.6.7 Terminology 208 6.7 RESULTS 208 6.7.1 Characteristics of guidelines 208 6.7.2 Definitions of autism 209 6.8 NARRATIVE REVIEW OF SOCIAL FACTORS 210 10 6.8.1 Operational factors 210 6.8.2 Interactional factors 213 6.8.3 Contextual factors 215 6.9 DISCUSSION 220 6.9.1 Social factors in CPGs 221 6.9.2 Diagnostic tools and process 222 6.9.3 MDT working and views of the family 222 6.9.4 Diagnostic uncertainty and judgement 222 6.9.5 Building on previous work 223 6.10 CONCLUSION 225 6.10.1 Strengths and limitations 226 6.10.2 Implications and recommendations for future research 226 INTRODUCTION TO CHAPTER SEVEN 229 CHAPTER SEVEN: DRAWING A LINE IN THE SAND: AFFECT AND TESTIMONY IN AUTISM