Places of Autism: Influences on Experiences of Autism in Atlanta, GA USA and Kerala, India Restricted; Files Only

Sarrett, Jennifer Christine (2014)

Permanent URL: https://etd.library.emory.edu/concern/etds/g732d9552?locale=en
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Abstract

Cross-cultural comparisons of psychiatric and cognitive differences are rare, due to methodological and analytical complexities, yet can provide unique and valuable information about the universality of psychiatric symptoms, treatment approaches, human rights, and best practices for international collaborations in global mental health. Research in this area is particularly salient for issues related children and to Autism Spectrum Disorders (ASDs), which are steadily increasing in global awareness as myriad nations encounter and adapt to Western definitions, concepts, and treatments for ASDs. This current project compares parental and professional experiences of children with autistic characteristics in Kerala, India and Atlanta, GA USA. A total of 112 interviews (76 in Kerala, 36 in the Atlanta area) were completed. They were comprised of parents who have children with pronounced traits of autism and professionals who work with this population (i.e. pediatricians, teachers, therapists, traditional healers). Pulling on theories and methods from disability studies, medical anthropology, and human geography, I compare these populations, focusing on three places of autism: the clinic, the home, and the school. After two chapters describing the background and development of my research questions, analytical method, and research design, there is one chapter for each place listed above. These chapters provide an analysis of the architectural, social, and temporal aspects of each place then presents results from interviews and observations to highlight a specific issue found in each place. The conclusion includes guidelines for future researchers, interventionists, or advocates hoping to engage with individuals associated with autism in different cultures or in culturally diverse families in their own communities. This section includes suggestions for how to 'read' each place of autism and outlines what information can be gleaned from clinics, homes, and schools. Next, there is a discussion of the ethical dilemmas of researching autism in different cultures using examples from the current research. Thus, this dissertation guides future international workers through the practical issues of work on or with children with intellectual, behavioral, and/or psychiatric differences while also fostering consideration of possible ethical challenges.

Table of Contents

Chapter 1: Why Culture Matters.....................................................................................1

Introduction: Project Description............................................................................1

A Note on Language................................................................................................5

An Overview of Autism...........................................................................................9

Autism: Coming of Age Around the World...........................................................12

My Story: The Portuguese Gypsy Camp...............................................................15

Multiple Influences: Culture, Mental Illness, and Autism.....................................23

Ethics, Morality, and Fieldwork.............................................................................27

Spaces and Places and Disability...........................................................................31

A Preview of the Chapters.....................................................................................37

The clinic...................................................................................................38

The home...................................................................................................40

The school..................................................................................................40

References..............................................................................................................42

Chapter 2: Methodological Background and Approaches...........................................50

Introduction............................................................................................................50

Research Sites........................................................................................................57

Kerala, India...............................................................................................57

The Kerala Model, the Kerala Paradox..........................................58

Education.......................................................................................60

Medical and healing clinics...........................................................61

Selfhood.........................................................................................63

Atlanta, GA USA.......................................................................................64

Recruitment Facilities and Informants...................................................................68

Data recruitment in Kerala.........................................................................70

Language and translator.................................................................70

Trivandrum.....................................................................................71

Wayanad.........................................................................................75

Data recruitment in Atlanta........................................................................77

Data Collection Methods.......................................................................................79

Interviews and Observations......................................................................81

Data Analysis.............................................................................................82

References..............................................................................................................85

Chapter 3: Place: The Clinic...........................................................................................92

Introduction............................................................................................................92

The Healing Places of Autism................................................................................95

Kerala, India...............................................................................................97

The Western-Style Clinic...............................................................97

The Āyurvedic Clinic...................................................................102

The Traditional Healers Clinic.....................................................106

Atlanta, GA..............................................................................................110

The Diagnostic Clinic...................................................................111

The Therapeutic Clinic.................................................................116

Clinics in Comparison..............................................................................120

Diagnostic Journeys.............................................................................................121

Diagnostic Practices.............................................................................................130

References............................................................................................................141

Chapter 4: Homes: Therapeutic Use and Choice........................................................147

Introduction..........................................................................................................147

Disability in Homes.............................................................................................148

Keralan Homes.........................................................................................153

Atlanta Homes..........................................................................................161

Therapeutic Choices, Stigma, and Parental Acceptance......................................166

Conclusion...........................................................................................................191

References............................................................................................................195

Chapter 5: Schools, Segregation, Stigma.....................................................................203

Introduction..........................................................................................................203

Kerala Schools.....................................................................................................210

NCLB, IDEA, Stigma..........................................................................................228

IDEA........................................................................................................239

NCLB.......................................................................................................231

Stigma and NCLB........................................................................233

Education and Teacher Training in Kerala...........................................................241

Conclusion...........................................................................................................253

References............................................................................................................257

Conclusion......................................................................................................................263

The Guidelines.....................................................................................................268

Research and cultural liaisons..................................................................270

'Reading' places for cues.........................................................................272

Purpose.........................................................................................273

Approach......................................................................................275

Expectations.................................................................................278

Behavior.......................................................................................280

What to learn at clinics............................................................................283

What to learn at homes............................................................................285

What to learn at schools...........................................................................287

The Ethics of Studying Autism Across Cultures..................................................290

Navigating Roles......................................................................................294

Sanctity of health care..............................................................................298

Context of Abuse......................................................................................302

Final Summary.....................................................................................................306

References............................................................................................................308

Appendix 1...........................................................................................................314

Appendix 2...........................................................................................................316

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