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115 CHAPTER FIVE Interpreting andTreating Autism in Javanese Indonesia: Listening to Folk Perspectives on Developmental Difference and Inclusion —AnnieTucker Autism spectrum disorder (ASD) is a complex neurodevelopmental disability primarily affecting language, socialization, and behavior that is often accompanied by additional symptoms such as gastrointestinal dysfunction, sensorimotor differences, sleep disturbance, intellectual disability, seizures, and anxiety. As a spectrum disorder, autism affects people in different ways, with different combinations and severity of symptoms leading to a wide diversity of profiles. With an acknowledged genetic component but a still-contested etiology, autism has a fascinating history that has captured an exponentially growing clinical attention and vernacular imagination and spurred significant debate (Murray 2010). Even as much remains to be learned—or perhaps unlearned—about ASD, global interest in and diagnosis of autism continues to increase. Sociocultural research undertaken from Israel (Shaked and Bilu 2006) to India (Daley 2002) to South Africa (Grinker 2007) to South Korea (Grinker and Cho 2013) suggests that even as autism is an increasingly widespread , a globalized framework of interpretation for social and developmental differences, familiarity with ASD symptoms, and diagnosis varies widely. Meanwhile, local beliefs, practices, and concerns influence the way families interpret and respond to developmental difference and whether they see the diagnosis to be a good fit for their children. Disabilities are constructed in a dialectical relationship with local ideas about personhood and well-being,parameters of normalcy,and available services (Ingstad and Whyte 1995; Skinner and Weisner 2007; Wendell 2000). Takingthisintoaccount,recentprojectshavescouredfolkloreandfolkmodels AnnieTucker 116 of developmental difference for analogues to autism (Frith 2003; Leask,Leask, and Silove 2005), with implications for advocacy and policy. But while those with other central concerns have used folklore to search for autism, folklorists have been, with a few notable exceptions (Brady 2013; Eberly 1988; Kitta 2012; Shuman 2011, 2013) relatively quiet on the topic of autism and developmental disability,despite the fact that local“folk theories”(Daley and Weisner 2003) about healthy and delayed development may be implicated in various therapies or interventions (Daley 2004; Danesco 1997; Garcia, Perez, and Ortiz 2000; Kim 2012; Jegatheesan, Miller, and Fowler 2010; Levy et al. 2003; Ohta et al.1987).Folkloristic perspectives have illuminated how communities respond to new diagnoses (Goldstein 2004), examined local interpretations for what could otherwise be called neuropsychiatric disorder (Etsuoko 1991), and used this understanding to inform effective syncretic treatment (Hufford 1998). A similar approach to studying ASD in different cultural places might prove similarly fruitful. Autism Spectrum Disorder in Indonesia: A“New Phenomenon” Java is Indonesia’s most populous island, a historic and contemporary hub of government, education, and media production. Javanese people comprise over half the Indonesian population and are one of the largest ethnic groups in Southeast Asia (Sutarto 2007). Although there are an estimated one million autistic Indonesians, autism awareness in Java is considered a “new phenomenon ” (Diniah 2010) paralleling a broader global history (Feinstein 2010) where the impetus for autism awareness and response initially came from parents who conducted independent research; traveled abroad to study psychology and special education; returned home to found activist, clinical, and service organizations, often inviting foreign specialists to consult; and compiled relevant libraries and materials. These grassroots efforts were important in spreading information about the label,criteria,and treatment of autism and inaugurating a public discussion about children with “special needs” (Tucker 2013). Slowly, state and private institutions have begun to assume greater responsibility for meeting these needs as sweeping economic, political, and social changes in the late twentieth and early twenty-first century led many parts of the country to new levels of stability, affluence, education, and good health (Vickers 2005).1 Meanwhile,increasing Internet connectivity and growing numbers of transnational families have exposed Indonesians to the global disability rights movement and new information about child development. Since the mid-1990s,autism has grown increasingly familiar across Indonesia as a clinical diagnosis and in popular culture. Outreach efforts continue Interpreting andTreating Autism in Javanese Indonesia 117 at an increasingly robust pace, encompassing specialized lectures, panels, and workshops; public awareness events; newsletters and support groups; memoir; film; and journalistic coverage. Influenced by disparate fields from orthopedagogy to the self-advocacy movement, these efforts (re)introduce and (re)frame autism for participants, with the common crosscutting globalized model of ASD as a distinct neurodevelopmental disorder recognizable through certain signs and symptoms that requires proactive response and particular treatment to...


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