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UNIVERSITY of CALIFORNIA Los Angeles Interpreting and Treating Autism in Javanese Indonesia a Dissertation Submitted in Partial

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UNIVERSITY of CALIFORNIA Los Angeles Interpreting and Treating Autism in Javanese Indonesia a Dissertation Submitted in Partial UNIVERSITY OF CALIFORNIA Los Angeles Interpreting and Treating Autism in Javanese Indonesia A dissertation submitted in partial satisfaction of the requirements for the degree Doctor of Philosophy in Culture and Performance by Anne Currier Tucker 2013 © Copyright by Anne Currier Tucker 2013! ABSTRACT OF THE DISSERTATION Interpreting and Treating Autism in Javanese Indonesia by Anne Currier Tucker Doctor of Philosophy in Culture and Performance University of California, Los Angeles, 2013 Professor Irma Dosamantes-Beaudry and Professor Michael Owen Jones, Co-chairs Autism is a complex developmental disorder affecting communication, social interaction, and behavior. As interest in this disorder has increased worldwide, clinical and social science researchers have begun to ponder how autism might be configured and understood in different parts of the world. There may be as many as one million people with autism in Indonesia, yet little information is available regarding the implications for affected individuals, families, and communities. My dissertation takes a sociocultural perspective in addressing how autism is recognized, interpreted, and responded to in Javanese Indonesia. Based on 12 months of multi- sited ethnographic fieldwork in Yogykarta and Jakarta, I have a) documented how autism is being introduced to and taken up by Javanese families, b) addressed the benefits and challenges of using autism as an interpretive framework for developmental difference, and c) considered the reactions to and implications for some of the interventions that have been attempted thus far. ii In doing so I make a number of key observations and claims. First, Javanese reactions to individuals with autism are deeply influenced by local models of personhood and sociality as well as socio-economic status. Second, introducing the concept of autism to Javanese families and attempting to make it useful for them is a complex process, and those who would do so call upon a number of variably successful strategies including a) making autism visible in the popular media, b) re-signifying autism in order to reduce stigma, c) building supportive networks, d) translating unfamiliar concepts associated with autism into familiar idioms, and e) teaching parents how to recognize the signs of autism and adjust their behavior accordingly. These strategies seem to be least successful when dissonant with local values and practices. I describe a promising experimental treatment that incorporates therapeutic gamelan practice and performance, which provides benefits for individuals with autism within an inclusive social environment that is framed as a Javanese tradition. My dissertation thus a) contributes to the growing cross-disciplinary scholarship on global autism by providing descriptive and qualitative data from Java, b) documents and analyzes the role of performance in the cultural construction of autism and c) proposes a framework for identifying interventions that might simultaneously meet the needs of autistic individuals and incorporate locally-prized activities and models of healthy development. iii The dissertation of Anne Currier Tucker is approved. Victoria Marks Thomas Weisner Robert Lemelson Michael Owen Jones, Committee Co-Chair Irma Dosamantes-Beaudry, Committee Co-Chair University of California, Los Angeles 2013 iv DEDICATION PAGE I would like to dedicate this dissertation to all the students on the spectrum I have worked with in various capacities over the course of this past decade as I have learned about the world of autism. My experiences with them shaped my professional trajectory in unexpected ways and catalyzed this research; but more importantly they have enriched my life with their generosity of spirit, keen sense of humor, and unique insights and ways of seeing the world. v TABLE OF CONTENTS Abstract of the Dissertation ................................................................................................ ii Committee Page ................................................................................................................. iv Dedication Page ...................................................................................................................v Table of Contents ………………………………………………………………………... vi Acknowledgements ............................................................................................................ ix VITA .................................................................................................................................. xi Chapter 1 Introduction Literature Review .........................................................................................2 Critical Concepts Underlying Study ..........................................................11 Multiple and Dynamic Pathways of Child Development ....................11 Cultural Models of Illness, Healing, and Disability ............................12 Critical Disability Studies ...................................................................14 Performing Autism and Disability ......................................................16 Ethnographic Approach of Study ...............................................................20 Autism as Experienced within Families .............................................22 Range of Treatments Available ..........................................................25 Autism in the Popular Media ..............................................................27 Outline of Chapters ....................................................................................28 Chapter 2 Autism in Indonesia: An Overview of a “New Phenomenon” Indonesian History in Brief ........................................................................32 Jakarta and Yogyakarta: Alternative Modernities in Urban Java ..............41 Autism in Indonesia: A “New Phenomenon” ............................................46 Treatment ...................................................................................................48 Education ...................................................................................................54 Autism Awareness and Networks of Advocacy and Support ....................62 A Growing Presence: Autism in The Media and Popular Culture .............67 Autism, Disability Rights, and National Development .............................72 Toward an Analysis of This New Phenomenon ........................................77 Chapter 3 Autism in the Javanese Family Approaching Autism in Javanese Indonesia: Entering “Local Moral Worlds” ........................................................................78 Javanese Personhood and the Javanese Family: Values, Goals, Practices, and Norms ..........................................................................79 Autism in the Javanese Family ..................................................................87 Labeling and Mislabeling ....................................................................88 Symptoms Noted ..................................................................................95 vi Perceived Etiology ...............................................................................98 Family Response and Coping Mechanisms .......................................101 Autism, Intimacy, and Family Dynamics ..........................................109 Treatment .................................................................................................113 Education .................................................................................................119 Community Response ..............................................................................124 Hopes and Fears for the Future ................................................................127 Conclusion ...............................................................................................131 Chapter 4 Performing, Teaching, and Learning New Cultures of Autism Introduction: Performing, Teaching, and Learning New Cultures of Autism ....................................................................134 Resignifying Autism, Disability, and Developmental Difference ...........139 Is Autism and Disability Culture a New National Culture? ....................148 Bahasa Autis: Learning the Language of Autism ....................................154 Reinterpreting Behavior and Learning to “Recognize the Signs”: Sharing Personal Narratives ...............................................................160 Interpreting a Quiet Baby: A Sign of Precocious Maturity or Autistic Pathology? ........................................................................168 Conclusion ...............................................................................................171 Chapter 5 On Food, Love, and Bad Behavior: Autism Intervention and Practices of Love in the Javanese Indonesian Family Introduction ..............................................................................................174 Autism, Feeding Practices, and the “Wrong Kind of Love” ....................175 Autism Halal: Translating Intervention into a Familiar Socio-religious Framework of Acceptable Behavior ..................................................185 Fostering Functional Adults: Anxieties in and about Indonesian Family Practices ..............................................................189 Disability, Nation, and Logics of Developmental Difference .................202 Chapter 6 Therapeutic Gamelan: Fostering Javanese Development and Embodying Javanese Inclusion
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