Places of Autism: Influences on Experiences of Autism in Atlanta, GA USA and Kerala, India Open Access
Sarrett, Jennifer Christine (2014)
Published
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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