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Border Children: Interpreting AutismSpectrum Disorder in South Korea

Roy Richard GrinkerKyungjin Cho

Abstract In this article, we describe reluctant mothers on the brink of accepting autism spectrum disorder(ASD) as a diagnosis for their children, but caught in a web of social meanings that push them to resist it. Weargue that several tensions underlie this resistance: (1) an opposition between homogeneity and heterogeneity,in which mothers aim to define their child as “normal”; (2) a distinction between social and intellectual domainsof child development, in which mothers localize their children’s problems as deficits in a discrete area ofdevelopment, rather than as a global or pervasive impairment; and (3) an opposition between chronicity andrecovery, in which mothers reject a label they fear will index a permanent condition. These oppositions helpto define the interaction between a diagnosis new to Koreans (ASD) and a particular condition (the childwho has the symptoms of ASD but is academically successful) to form a new kind of child that mothers andteachers increasingly call “border children” (gyonggye-seon aideul). This specific ethnographic inquiry informsdebates over the ontological bases for psychiatric diagnoses in children, and the processes through whichlocal institutions, classificatory schemes, expertise, and child behavior shape conceptions of child development.[autism, Korea, child development, child psychiatry, border children]

In this article, we describe reluctant mothers on the brink of accepting autism as a diagnosis,but caught in a web of social meanings that push them to resist it. We argue that severaltensions underlie Korean mothers’ ambivalence about autism spectrum disorder (hereafter,“ASD”): (1) an opposition between homogeneity and heterogeneity, in which mothers aimto define their child as “normal,” meaning that the child does not stand out from his or herpeers; (2) the distinction between social and intellectual domains of child development, inwhich mothers localize their children’s problems as deficits in a discrete area of development,rather than as a global or pervasive impairment; and (3) the opposition between chronicityand recovery, in which mothers reject a label they fear will index a permanent condition.These oppositions help to define the interaction between a diagnosis new to Koreans (ASD)and a particular condition (the child who exhibits numerous social deficits but is academicallycompetent) to form a new kind of child that mothers and teachers increasingly call “borderchildren” (gyonggye-seon aideul). By using this new category, mothers are not echoing thecommon belief in the field of psychiatry that autism is a spectrum or continuum, because thecontinuum, by definition, has no discrete borders, and because North American cliniciansview ASD as pervasive, chronic, and affecting multiple domains of cognition and behavior.For these mothers, however, the border is temporary, distinct from ASD, and defined largelyby a single domain, the social.

ETHOS, Vol. 41, Issue 1, pp. 46–74, ISSN 0091-2131 online ISSN 1548-1352. C! 2013 by the American AnthropologicalAssociation. All rights reserved. DOI: 10.1111/etho.12002

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It is by now a truism that psychiatric diagnoses are social constructions, but the historicityof diagnostic classification schemes does not suggest that symptoms or constellations ofsymptoms were not real or disabling before they were named, only that the labels andthe meanings they acquired were new. Indeed, the group of behaviors that most clinicianstoday refer to as “autism” was, for many years, thought to be a feature of what was termed“childhood schizophrenia,” a disorder most experts today believe is rare if not nonexistent.The concept of childhood schizophrenia fell into disuse not because children’s forms ofdistress changed, but because the idea of what constituted schizophrenia and autism changed.

Nonetheless, the general view within the field of psychiatry is that diagnoses index “real”diseases. Even those experts who admit that diagnoses pathologize variations in humanthought and behavior in one locale that may not be pathologized elsewhere, agree thatpsychiatric diagnoses are often needed to inform treatments and services, whether in theclinics or schools (Costello and Janiszewski 1990). Indeed, the growth of disability advocacyand special education in the United States has depended in large part on the increasingacceptance of psychiatric diagnoses as markers of abnormality that, when deployed in in-stitutional settings, can (ideally) yield therapeutic, financial, and educational benefits (Will1986). Thus, as psychiatry has expanded at home and abroad, a wide range of scholars andjournalists have argued that psychiatry, and the medical model more generally, is a power-ful (and Western) rationality that shapes conceptions of the human mind and its variations(Conrad 2007; Healy 2004; Lane 2007; Watters 2010; Whitaker 2010). Unfortunately, thereare to date only a few data-driven studies of how, in the context of the global influence ofpsychiatric knowledge, culture shapes the understanding and management of autism (Daley2002, 2003; Daley and Sigman 2002; Ochs and Solomon 2004; Shaked and Bilu 2006; seealso a special issue of Ethos [Solomon and Bagatell 2010] devoted to autism and culture).Researchers are just beginning to study the extent to which factors such as race, ethnicity,and poverty influence the recognition and treatment of ASD, not only across but also withincultures (Grinker et al. 2011; Mandell et al. 2005).

This article is not about autism as a stable disease category. We do not presuppose thatthe Diagnostic and Statistical Manual of Mental Disorders (DSM) is a mirror for reality orthat its distinctions and classifications are grounded in nature. Instead, we address autismas a culturally and historically contingent concept. The medical establishment, parents, andteachers are each creating a different vision of what being autistic means (and doesn’t mean).We focus on mothers who, despite pressures to think about their children in terms of DSMdiagnoses, resist them.

This specific ethnographic inquiry—South Koreans’ reluctance to accept ASD as a validdiagnosis for children who exhibit what the DSM-IV-TR considers to be the symptoms ofASD—draws on debates over the ontological basis for psychiatric diagnoses in children. IanHacking, a central figure in the literature on the social and epistemological constructionof psychiatric disorders has sought to bridge opposing perspectives on new diagnoses bydescribing how mental illness classifications “interact” with both the people classified andthe institutions and practices associated with those classifications. He assumes that actual

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biological phenomena underlie conditions the psychiatric community names and classifies assymptoms or diagnoses, but he focuses on how the psychiatric concepts and the institutionsthat support them evolve and change the way one understands human thought and behavior(Hacking 2007). For example, Hacking notes that the term hyperactive, contained in themore formal diagnostic label “Attention Deficit Hyperactivity Disorder,” interacts with amatrix of institutions and practices “predicated upon classifying children as hyperactive”and, in the process, creating a new kind of person (1999:103). Complementing Hacking’sview, Allan Young considers psychiatric diagnoses as “techno-phenomena,” that is, productsof “technologies, practices, and preconditioned ways of seeing” that, at least in Westernworldviews, have acquired the status of autonomous entities (Young 1995:10) that canbe constitutive of individual identities. Indeed, much of the history of psychiatry can becharacterized as a movement away from descriptions of temporary personality traits (e.g.,a person reacting with anxiety) to definitions of identity (e.g., a person with an anxietydisorder). Similarly, sociologist Gil Eyal and colleagues (2010) show how a complex set ofactors (parents and other advocates, schools, doctors, speech pathologists, epidemiologists,psychologists, research foundations, etc.), work in concert to identify, name, count, and treatneuropsychiatric difference. From these perspectives, ASD cannot be considered either fador fiction, but like many classifications (or forms of suffering), exists in a loop generated bythe production of knowledge.

The mid–20th century concept of the refrigerator mother, championed by Bruno Bettelheim(Bettelheim 1967), is illustrative of the loop. Suggesting that distant mothers caused autism,the concept came about because psychoanalytic theory sought explanations for mental illnessin disturbances of childhood. The description of a distinct autistic syndrome with onsetin early childhood, when most infants spend more time with mothers than with fathers,reinforced the theory and reaffirmed the image of a particular kind of modern mother—cold, disengaged, and responsible for a range of social ills, such as autism, homosexuality,and criminality (Ladd-Taylor and Umansky 1992). Over time, outraged parents of autisticchildren resisted this view by becoming advocates, writers, and mental health professionalsthemselves, thus changing the body of knowledge that informed clinical descriptions ofautism. Their advocacy activities, as well as the declining use of psychoanalysis as a clinicalmethod, and its replacement by other forms of psychological theory and practice, soweddoubt among those once quick to blame mothers for their children’s conditions. Today, onewould be hard pressed to find subscribers to the refrigerator mother theory in the UnitedStates.

As disciplinary practices and classifications are produced, the professionals, schools, clinics,and even the people diagnosed with psychiatric disorders behave differently, and their behav-iors feed back to further influence knowledge and classification. Bagatell (2010), for example,shows how high functioning autistic adults construct and interpret their own identities andbehaviors in the context of increased media and scientific attention to ASD, advocatingfor themselves, challenging conventional views of ASD as impairment, deficit, or disease,and reframing the autistic as the “neurodiverse” and the nonautistic as the “neurotypical.”Commenting on the degree to which adults with ASD succeed in certain occupations (such

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as computer science and engineering) precisely because they are autistic, Bagatell writes that“as society is transformed by technology, the nature of human sociality may be scaffolded andtransformed in ways that come to mirror an autistic sociality and thus reframe the disablingproperties of autism itself in more positive terms” (2010:15). Viewed in social and historicalcontext, autism is thus a fluid category (Kaufman 2010), a “free-floating signifier” (Eyal et al.2010), in a web of multidirectional institutional and symbolic forces.

Having noted how formal psychiatric diagnoses emerge inside (and because of) a complexfeedback loop of technologies, ideologies, and social forces, we turn to an investigationinto how mothers resist increasing pressures to seek or accept a diagnosis of ASD for theirchildren. Ironically, some of this pressure comes from an epidemiological study of ASD inSouth Korea in which we participated (Kim et al. 2011). Although our participation in thestudy might suggest that we were concerned primarily with locating cases of an entity weassumed existed, we were more interested in what the application of DSM-IV-TR criteria toa South Korean population would yield, whether a South Korean community would describetheir children in terms consistent with the criteria, and whether parents would accept orresist the concept of autism.

We found that Korean mothers who reported that their children were distressed, impaired, ordelayed in their social or intellectual development, did not object to the general phenomenaof impairment being studied. They said their elementary and middle school–age childrenwere isolated, socially awkward, and unable to make and maintain friendships. They saidtheir children’s interests were unusual, narrow, and restricted, like being obsessed withceiling fans, light switches, and elevators, and that their children became enraged whenteachers or parents tried to engage them in new activities. They also said their children wereuncooperative, could not follow rules, and wandered away from home or school (sometimesgetting lost). However, because they objected to the label of ASD, they resisted the ideathat these problems were evidence of a pervasive disorder. For the mothers with whomwe spent time during our research, their sons and daughters were not autistic but rather“border children.” These mothers acknowledged that they were in a bind. By choosing toresist a diagnosis of ASD they were also rejecting clinical and special education services,because delivery of those services in South Korea is contingent on a DSM diagnostic label.Yet some of them did take their children to private social skills programs, as these lessonswere considered a form of play, rather than clinical therapy or special education. We areconcerned in this article with how and why mothers make these choices.

The border child in South Korea appears to have no single origin, but has emerged over timeas a lay classification to describe those children who are educated in mainstream schools,almost always without psychiatric diagnosis, treatment, or services but whom Western-trained clinicians would describe as having ASD (Kim et al. 2011). Such children are notdeemed sufficiently disabled in Korea to be classified in school or clinic records with adisability, and yet are not considered to be “normal” (chungsang). Mothers consider thechild “at the border” to be only temporarily impaired and without the need for a clinicallabel. The Korean situation is emblematic of a central paradox within many discourses on

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child development and disability throughout the world: parents resist a fixed diagnosis byproducing competing discourses and classifications that suggest the possibility of change andnormalcy.1 Among the ultraorthodox Haredi Jews of Israel, for example, mothers constructan image of the autistic child that integrates both religious and medical conceptions of autism(Shaked and Bilu 2006). As a consequence, mothers experience an extraordinary ambivalencethat keeps them from committing to any particular mode of therapy. Autism, for these Israelimothers, is both a disease and a blessing, an affliction but also evidence of the transmigrationof a sinful soul into a being without sin, something to be treated with medicines, but alsosomething to be accepted. Shaked and Bilu (2006:16) give voice to the mothers’ perspective:“If the affliction is God’s ungraspable decree, is it right to seek treatment designed to reverseit?” These Israeli mothers thus construct a new kind of person within the shadow of autism,and so do Korean mothers when they construct the border child.

The Psychiatric and Educational Contexts

As defined by the DSM-III-R (1987), autism, now ASD, is a pervasive developmental dis-order (PDD) defined by impairments in social relatedness and communication as well asrestricted, stereotyped, and repetitive behaviors. Despite being described in 1943 in themedical literature as a distinct syndrome (Kanner 1943) “autism” appeared in the first andsecond editions of the Diagnostic and Statistical Manual of Mental Disorders, the DSM (1952)and the DSM-II (1968), only as symptoms of what was called “childhood schizophrenia.”It was not until the DSM-III (1980) that autism became a discrete diagnosis with its ownset of diagnostic criteria. By the time the American Psychiatric Association (APA) publishedthe DSM-IV (1994), researchers and clinicians in North America considered autism oneof several PDDs, including PDD-NOS (Not Otherwise Specified) and a new diagnosis,Asperger’s Disorder. The fifth edition (the DSM-5 in press),2 currently being prepared bythe APA, will reverse course by removing the subtypes and collapsing all the PDDs into thesingle term ASD. ASD thus refers to the broad spectrum of autism and includes individualswho are severely impaired, and may be nonverbal, as well as mildly impaired individuals whomay have superior intelligence and special gifts in specific areas, such as mathematics, art,or music. Prevalence estimates of ASD in North America and Europe have ranged widelydepending on the epidemiological method employed and date of study, but the most recentestimates are approximately 1 percent (Newschaffer et al. 2005; Autism and DevelopmentalDisabilities Monitoring Network 2007a, 2007b; U.S. Centers for Disease Control and Pre-vention 2009). It should be noted, however, that there are no robust epidemiological data onthe prevalence of ASD in any country in South America, Africa, or Asia, with the exceptionof Japan and Korea.

Previous editions of the DSM included a subcategory for people betwixt and between thestandard categories: PDD-NOS. In public and everyday clinical discourse, the NOS cate-gory, and now the concept of “the spectrum,” often serves in western Europe and NorthAmerica as a euphemism for autism, a way to describe the symptoms of autism without de-noting severe impairments. However, from the perspective of a parent in the United States

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trying to find the best services for her child, it made little sense to have her autistic childlabeled with PDD-NOS because this was tantamount to saying that the child did not trulyhave autism, and thus risked losing educational and insurance benefits. The U.S. Depart-ment of Education recognizes “autism” as a disability under the Individuals with DisabilitiesEducation Act, but not PDD-NOS, Asperger’s Disorder, or any of the other subcategoriesof PDD. In the United States over the past several decades, as special education programsgrew, the economic, social, and therapeutic ramifications of diagnosis changed. Parents be-gan to actively seek a clinical diagnosis of autism because school systems could not deliverautism-specific services without one. As one result, “autism” is one of the fastest growingdiagnoses under which school systems provide special education services.

In contrast, ASD is seldom diagnosed in Korea, for reasons we describe below. Yet there isincreasing pressure on parents and Korean clinicians to rethink their conceptions of autism.First, there is heightened awareness of the condition in the international media, includinge-mail, blogs, and social media through which nonresident Koreans and U.S. foundations tryto increase awareness of autism abroad. UN Secretary General Ban Ki Moon and his wife,Yoo Soon-taek, both Koreans, have promoted autism awareness in Korea and spearheadedan International Autism Awareness Day, celebrated annually by the United Nations. Second,Korean clinicians educated in North America or the United Kingdom are returning to Koreatrained and concerned to identify ASD. Third, in 2011, a total population study of morethan 36,000 7–12 year olds in Ilsan, South Korea, carried out by an international team ofresearchers (incl. the first author of this article [Grinker]), estimated the prevalence of ASDto be 2.64 percent, the highest rate ever reported for ASD in any country (Kim et al. 2011).3

In Ilsan, the city in which we conducted our ethnographic research, approximately two-thirds of these children were enrolled in mainstream public and private elementary schools.Parents and teachers described the specific children identified in the study as suffering froma range of social and/or intellectual difficulties. Their parents indicated no prior diagnosisof, or treatment for, any psychological or cognitive disorder, and there was no record in theschools or in government disability documents, of a diagnosis or treatment. Interestingly,few local Korean media reported on the epidemiological findings of the larger study inwhich we were involved, yet Koreans were exposed to the results of the study throughwidespread Internet and international print coverage, as well as television reports on U.S.news programming available in Korea.4

Perhaps one reason so few children are diagnosed or treated for developmental difficulties isthat Korean psychiatry is young in comparison to Japan, and European and North Americancountries. Korean medicine in general, relies on a recently imported body of knowledgeand practice from the West (yang-euihak), although traditional or “Oriental” medicine (han-euihak) is still prevalent. Psychiatry was first introduced into Korean hospitals in 1923 byan Australian missionary, Charles Inglis McLaren, and was constituted largely by neurologyand the treatment of opium addition, because problems of “the mind and heart” (maeum-eui byong), as psychological problems are often phrased in Korean, were not consideredlegitimate medical ailments. By the end of the Japanese colonial period in 1945, there wereonly ten “neuropsychiatrists” or neurologists in Korea (Chung et al. 2006) and mental

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illnesses were considered evidence of a weak spirit or character. Given the stigma of mentalillness, and with few patients to treat, psychiatry remained an underdeveloped and unpopularfield of research and treatment until the 1980s.5 A second reason why Korean children maynot be diagnosed with psychological disorders is that clinical practice has not kept pacewith the introduction, translation, and cultural modification of diagnostic and researchinstruments. Psychiatry in Korea relies on the DSM for diagnostic criteria and has largelyaccepted the DSM as a compendium of evidence-based scientific truths, as opposed to a seriesof constructs developed by and for the West. However, at the time of this writing, SeoulNational University Hospital is the only major hospital in Korea that employs (and onlysince 2007) a clinician certified to administer the diagnostic instruments that, at least for thepurposes of describing and diagnosing conditions consistent with the DSM, are consideredthe gold standard: the Autism Diagnostic Observation Schedule (ADOS) and the AutismDiagnostic Interview-Revised (ADI-R).6

Given these conditions, the public’s understanding of ASD is based largely on images frommovies and soap operas, which portray individuals with ASD as significantly impaired andthus do not convey a sense of the spectrum. Although the highly popular Korean movieMarathon (Jeong 2005), which depicted the running successes of an adult man with autism,increased awareness of ASD in Korea, it also reinforced the belief among Koreans that allpeople with autism are intellectually disabled, require intensive supervision, and are unableto live independent lives. Similarly, “Precious Family” (Bumonim Jeonsangseo), a soap operathat aired on Korea’s national television network, on weekend evenings, the most covetedslot for programming, featured a family with an autistic child who was verbal but well behindhis peers in intellectual development (Jeong and Jeong 2004–05). Although children withdisabilities had been featured in television dramas before, this was the first case a childspecifically diagnosed as “autistic” (japye-ah) was shown on national television.

Educational programs in Korea have not kept pace with the growing awareness of specialeducation needs. Beginning in 1977 with the Special Education Promotion Act, the Koreangovernment launched an effort to promote special education, and in 1994 passed the Lawfor Integrated Education (Tonghap Gyokuk Bop), requiring that K–12 public schools educatedisabled students in regular classrooms. Depending on the type and level of disability,disabled students in mainstream schools would attend the regular classroom in combinationwith special education classes according to their specific needs and function. Yet by 1997,less than half of all students with a classification denoting special education needs receivedservices in school (Shin 2002:105) and less than half of the students who had received specialeducation services in elementary school graduated from middle school and high school(Korea Research Meeting for the Asia/Pacific Decade 1997).

Elementary school education in South Korea is free and mandatory with student placementdetermined by local government offices based on a child’s permanent residence. Alternativeschools are a rarity because the government seldom provides them with certification, andin 2006 there were fewer than 5,000 students in the entire country (population 49 million)who were homeschooled (Seo 2009). Children with disabilities may be admitted to one of

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the small number of special education schools or special education classes within generalschools if their parents apply for and receive a certificate of disability registry enrollment.

Although the disability registry is confidential, parents are ambivalent about using it forfear that their child’s name or classification will be disclosed, and that public knowledgeof the disability will negatively affect his or her future. But students without certificationof a diagnosis are not provided special education or even the few other services offeredwithin the school system, such as cognitive or speech therapy. In Ilsan, the site of theresearch we conducted for this study, 0.8 percent of students attend special education schoolsor special education classes, a rate comparable to special education enrollment nationally(0.75 percent) in South Korea (Korean Ministry of Education, Science, and Technology/Korean Educational Development Institute 2010).

Methods, Participants, and Setting

Since 2005, we have been conducting participant-observation and interviews with teachersand parents of children who have a range of impairments in social communication, asreported by these teachers and parents.7 Many of these children have been diagnosed withASD since then. In addition, we have conducted participant-observation in mainstream andspecial education school settings, including playgrounds, after-school educational programs,and informal meetings of parents to discuss their children’s classrooms. The ethnographicdata presented in this study were collected mainly from four sites: (1) schools in the Ilsandistricts of Goyang City, Korea; (2) an after-school social skills program attended by childrenfrom the Ilsan area; (3) a mothers’ support and education informal group in the greaterGyeonggi-do area, which includes Ilsan; and (4) two hospitals—one in Ilsan, the other in themore affluent Gangnam neighborhood in Seoul. In addition, within Ilsan we conducted threegroup interviews with teachers (n = 31), one group interview with parents of children withsymptoms of ASD (n = 16), and numerous separate in-depth interviews with approximately30 mothers of children who attend intervention programs for children age seven and older,although not all these programs were tailored to children with developmental disorders. Wealso interviewed two groups of mothers of typically developing students (n = 10, each).

All observations and interviews were carried out by one or both of the authors (one of whomis male, the other female, both of whom have children with ASD), in Korean,8 between 2005and 2011 in Ilsan, a city located within the greater Seoul Metropolitan area. Some of themwere carried out in conjunction with a large-scale epidemiological study of ASDs in SouthKorea (Kim et al. 2011). The group interviews, which included parents recruited from agroup of 33 different schools in Ilsan, were open-ended discussions of participants’ generalexperiences raising young children, although they also included focused discussions of thespecifics of the epidemiological study with which the authors were involved, such as consentforms, administration of surveys, locations for diagnostic evaluation. In our interviews,mothers discussed attitudes that they believe influence symptom reporting, stigma relatedto autism and other developmental disorders, and the language of the research protocol and

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consent forms used in the epidemiological study. Unless otherwise noted, when discussingparents, we are referring to mothers, because, in the Korean context, mothers are primarilythought of as, and to a large extent are, the main caretakers of children (Park 2007), andbecause mothers constituted the vast majority of our interviewees.

Ilsan (area 102 km2; population 560,232) is the name given to two districts, East Ilsan andWest Ilsan, formally part of Goyang City in Gyonggi-do Province. Ilsan is the product of astring of government-led city-planning projects called “New City Development” (shindoshigaebal) launched during the 1990s to relieve the housing crisis in the Seoul Metropolitanarea.9 French geographer Valerie Gelezeau (2003) describes Korean residential areas such asIlsan, with their large monolithic apartment complexes, as spaces “transformed into desiresof modernity and middle-class status.” They are the site for what Park and Abelmann (2007)refer to as “class and cosmopolitan striving,” in which mothers carefully manage educationas a means to preserve or enhance social status. The mothers for whom we have financialinformation reported income that Koreans consider to be middle class, with householdincomes between 4 and 7 million won per year (between $42,000 and $84,000 per year). Mostdid not know each other prior to our interviews because their children attended differentschools, but many did know the researchers because we had met them at the schools wherewe conducted participant-observation.

One of the authors (Cho) participated in a mothers’ group whose children met once aweek for a social skills program at the northern boundary of Seoul, near Ilsan, from August2007 to November 2009. Most mothers resided in the Ilsan area, and had been referredto the social skills program through the epidemiology study mentioned above. The group,consisting of five mothers (incl. one of the authors [Cho]), would engage in suda, that is,“talk,” while waiting for the children. Two of the children in this group had received adiagnosis of ASD from a hospital prior to attending the program, but the remainder hadbeen referred to the program through the epidemiological study, which had identified theirchildren with ASD. Mothers openly discussed their children’s difficulties as each of thechildren attended different schools. The mothers would have been deeply concerned aboutdisclosing their children’s challenges to other mothers from their children’s schools. Thesocial skills program (sahoe-song peuroguerem), as its name suggests, was not considered to bea special education program or a program for the disabled or psychologically challenged.Mothers understood that this was a program to help their children to learn how to makefriends. None of the children in this group were registered with the government as havinga disability.

We also conducted in-depth interviews with two of the mothers in the social skills program,and carried out observations and interviews at a mothers’ support and education grouporganized and attended by one of the authors (Cho) in 2005. The group consisted of sevenmembers of “Cooperative Childcare and Education” (Gongdongyuka), a nationwide networkof daycare centers. The mothers, all of whom had a child (or children) with a disability(although not limited to ASD) or “on the border,” met biweekly between February 2005and February 2007, to discuss the merits and drawbacks of inclusive education.

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Heterogeneity, Normalcy, and Stigma

In the following discussion among five mothers and one father, parents move around thesubject of autism with no intention of embracing an autism diagnosis, yet aware that theirchildren exhibit features characteristic of ASD. They occasionally describe specific symp-toms, such as repetitive behaviors, difficulty using the appropriate verb suffixes that denotehierarchy, or poor eye gaze, but do not dwell on them. These parents eagerly participate inthe discussion, one of their few opportunities to meet other parents of border children, andto validate their views. However, it should be stressed that although Korean mothers dislikethe term autism, neither do they fully embrace the term border. Mothers use the word as analternative to ASD when they are challenged to explain perceived aberrations in behavior.

In a group interview with mothers in May 2008, Eun-kyung was the first to raise the conceptof the border.

My son has always been diagnosed at the border area, so it’s hard to say he has autismor does not have autism. He talks, and his speech is in the boundary of what autism is.10

Other mothers followed by tacitly approving of at least one aspect of the meaning of border—the ambiguity of clinical diagnosis—although they did not use the word border themselves.Instead they used the term tendency (kyunghyang). Eun-kyung and Hye-yeon agree thatneuropsychiatric testing is unreliable because, they claim, the difference between a diagnosisand no diagnosis depends on a small number of questions. They suggest that diagnosis maybe to some extent arbitrary, and a third mother, Mi-ok, agrees.

Hye-yeon: The doctor told me my son has a tendency to autism.Eun-kyung: The difference [between having autism and not having autism] is just a few questions on a test.Mi-ok: So the test doesn’t tell you anything.

Fearing that she might be going too far in her criticism of clinical assessments, Eun-kyungsoftens her position. She acknowledges the value of a clinician’s opinion. In response, afourth mother, Hee-jong, describes the tendency to autism as a diagnosis, but her husbandadds that this diagnosis does not necessarily denote difference.

Eun-kyung: But the mom should know [i.e., be told] if there is tendency to autism.Hee-jong: My second son is 4 and he was diagnosed with a tendency to autism. So I went to another

doctor and he said my child had a social disorder. He [my husband] yelled at me. Myhusband and I had a big fight about it. I was just relieved that he didn’t have autism.

Sang-joo Our son is hardly different from other children.[Hee-jong’s

husband]:

These mothers are deeply concerned about how to understand expertise. Indeed, in educa-tional and clinical contexts, such as school meetings to decide a child’s classroom placement,or in clinical contexts, verbal performances reveal the power of biomedical or “expert”discourse both to shape and repress lay conversation (Carr 2010; Danforth and Navarro

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2001). Yet such discussions of a child’s social deficits and their social, educational, or medi-cal consequences, usually take place outside of institutional settings, in gossip or in privateinterviews. The concept of the border thus emerged in informal gatherings of parents weobserved on the school grounds—or in the context of interviews for the research presentedhere—as mothers crafted interpretations of their children’s behavior, advocating or contest-ing, and sometimes negotiating, the idea that their children should be described in biomedicalterms.

For the mothers we interviewed, differences between their children’s abilities and the imag-ined idea of normal functioning were glossed as strangeness (isangham). An ideology ofsameness, an essentialist image of Koreanness, underlies numerous areas of Korean soci-ety, from attitudes toward domestic and international politics (Grinker 1998), to kinship,adoption, and marriage (Kim 2007). The concept of the border serves to mitigate boththe disease state (autism) and the stigma, interlocking children with deficits in social com-munication with normal functioning, even if at the margins. The border functions as adiscursive device permitting discussion of a subject without having to legitimize autism as adiagnosis.

The fear of stigma requires the fear of an audience (Goffman 1986) and in Korea this meansthe schools, teachers, and especially other parents. In Korea, as in many other Asian nations,schools have become social battlefields in which competition to achieve academic excellenceas a means for prestige and social mobility has uprooted conventional idealistic notions ofeducation as the creation of an informed and intellectually engaged civil society. K–12 schoolsin Korea are filled with tension, as students are rigorously trained to endure competitionunder high pressure, and parents build personal networks with teachers and other parentsto ensure their children’s academic success. Korean anthropologist Chung Byung Ho haslikened Korean students to “gladiators” thrust into a ring and forced to compete in aninvoluntary fight with their peers to win a prize that is based on a social fantasy (Chung2008). The prize is entrance to an excellent university; the fantasy is that the universitydegree will ensure them the prestige necessary for future financial and social successes.These gladiators are managed by their parents, who take them to the most reputable after-school tutors they can afford.11 This competition is driving the wave of early educationalservices, after-school learning, and the emergence of what Korean anthropologist Park SoJin calls “manager mothers” (Park 2007). On most afternoons, after school, most childrengo to the hakwon, or after-school academies directly from school, and some do not arrivehome until after midnight.12

Among these “gladiators,” then, are children who exhibit what Korean psychiatrists considerto be a range of functional impairments, and parents and teachers consider to be problemsin social development, and yet most remain undiagnosed and receive no special servicesor accommodations (Kim et al. 2011). School teachers acknowledge the fact that “sociallyimpaired” children exist in the classroom as there is no system of services to which theycould appeal for guidance. Because the children were performing with varying degrees ofacademic success in the Korean educational system, and their parents did not seek special

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education or psychological services, the children had no record of a disability or diagnosis.The teachers themselves said they did not consider “border children” to have a disability(jang-ae). Kim and colleagues (2011) suggest that the highly formal and routinized classroomstructure in Korea suits some of the needs of children with ASD who are high functioning.Our own observations of elementary school classrooms generally confirm this assessment.There were cases of children with serious deficits in their social skills who appeared to usto cause no classroom disruptions. On the other hand, there were also cases of childrengetting up during class and walking into the hallways or outside, or raising their hands to askquestions unrelated to the topic being taught. Teachers used the term usual suspects (euishimdueneun aideul) when discussing these children with us. However, some teachers interpretedtheir behaviors to be symptoms of an attention deficit disorder rather than ASD. For somemothers, it was vital that the child did not draw the teacher’s attention. Eun-ju, whose sonhad not been diagnosed and whom she considered to be “on the border,” made the pointsuccinctly:

Eun-ju: The biggest concern for me when [my child] entered elementary school, was, “Will he blend in withhis peers” [mudhyo-gal su isseul-ka]? I dreaded that he would stand out. That the kids and the teacherwould discover something odd about him. [November 18, 2007]

It is important to note that the epidemiological study did not pathologize behaviors theparents or teachers considered to be normal. The children who were being educated inmainstream environments and who were ultimately diagnosed with ASD in the study werefirst identified only through screening questionnaires distributed to parents and teachers.Children were invited for a clinical assessment only if they were screen positive, mean-ing that parents and/or teachers reported that they exhibited a range of functional im-pairments. Children ultimately diagnosed with ASD were diagnosed after lengthy clinicalevaluations by child psychiatrists, with a series of reliability checks. Most of the few chil-dren who had previously received a diagnosis of ASD were not educated in mainstreamschools, and typically had some degree of intellectual disability (Kim et al. 2011). Some werenonverbal. However, Korean schools have no official terminology to characterize high-functioning children with a developmental disorder, and have no system in place that offersconsultation, counseling, and support services for them. In Korea, the concept of disabilitycontinues to be associated with physical challenges or severe intellectual disability, ratherthan with the milder impairments of the children identified with ASD in the mainstreamschools.

The presence of such children within the school does not go unnoticed by parents of “nor-mal” children. Mothers are a ubiquitous presence in elementary schools, as they participatein a semiformal parent-support system for teachers. Mothers volunteer to clean classrooms,oversee pedestrian traffic in the school zone, and assist in the cafeteria.13 These activitieshelp them forge relationships with their children’s homeroom teachers and school staff, andmany mothers hope that by doing so, the teacher will protect their children from bullies orat least not ostracize them.14 Indeed, mothers became anxious when, for whatever reason,they were unable to participate at school. They feared that their children, would “fall out of

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the loop” (wangdda dangha-da).15 Some mothers give cash and other gifts to the teacher, inaddition to their labor. Although mothers could provide no figures during their interviews,they suggested that a significant portion of teacher and staff salaries come from parentdonations and gifts. In addition, throughout the day, mothers who do not work outsidethe home may gather in the school at the parents’ room, a space designated for volun-teer parents, to exchange gossip and information about children and teachers and discussbroad topics relating to education, such as standardized testing and college admissions.These sites are key spaces in which discourses concerning specific children within theregular classroom are generated through gossip and “chatting,” what Koreans refer to assuda.16

Because of the tight networks forged among mothers and between mothers and teach-ers, information about both teachers and students, their character and skills, as well asnews about exceptional extracurricular teaching centers, flow freely and fast. Parents whohear about a child with behavioral problems fear that the presumably disabled student willhave a negative effect on their own children, and they may put pressure on the schoolor after-school academy to expel the child. Mothers we interviewed were terrified of thishappening to them. They would be unable to wait outside the neighborhood school or theacademy, unable to form the relationships that confer social status on mothers. Motherssaid that being discussed in a negative light—that is, to become the subject of suda—istantamount to being ostracized from the school community. And because the school com-munity is embedded within the apartment community, suda can also marginalize mothers athome.

Danforth and Navarro describe the “conflicted cultural terrain of communication” in whichmeanings are generated and negotiated and note that “the cultural power of medical dis-course, as a way of framing childhood behavior problems, is so dominant that language usershave little choice but to contend with it in some fashion” (2001:173–174, original emphasis).One way for Korean mothers to contest autism is to resist the label. In interviews we con-ducted for the 2011 Korean prevalence study, mothers suggested that our research on autismwould be more feasible if we did not use the word autism at all, or used it only “in secret,” bywhich they meant we should talk about the symptoms but not the classification itself. Thissentiment was shared by teachers as well. During our interviews, we repeatedly heard fromteachers that should we use the term autism, mothers would most certainly never open upabout their children’s condition.

Certain mothers rejected the label altogether, stating that their “border child” could notpossibly have anything in common with autistic people as shown in movies and television,who they asserted all had intellectual disability. As researchers, however, we frequentlyintroduced the word autism into interviews in an effort to study how our informants woulddiscuss it. Not surprisingly, our focus on autism, combined with our involvement in anepidemiological study that increased awareness of autism in Korea, complicated the research.We cannot be sure if parents and teachers described social deficits because of concerns thatexisted prior to our interviews or because they were appealing to our interests.

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Localizing Deficits: The Social and the Intellectual

In this section, we describe how Korean mothers distinguish between social and intellectualfunctioning. In doing so, they actively resist the diagnosis of autism but they are not nec-essarily resisting psychiatry or the authority of medical and psychiatric expertise. Ironically,they echo a central theme of ambiguity in the Western history of the construct of autism:autism emerged as an amorphous, and therefore symbolically charged, category. Eyal andcolleagues have shown that autism has always been on the border, betwixt and between men-tal illness (namely, schizophrenia) and intellectual disability, and its place in this “no-man’sland” (2010:138) is affirmed by the early writers on childhood developmental disorders.Some, like the eugenicist Alfred Tredgold, argued as early as 1908 that intellectually giftedchildren were more at risk for social impairments, and both Kanner and Asperger enshrinedhigh intelligence as a hallmark of autism (Tredgold 1947). Years later, clinicians began sub-stituting the diagnosis of autism for many children who might have previously received aprimary diagnosis of “mental retardation” (Shattuck 2006; Bishop et al. 2008), children Kan-ner and Asperger would likely never have considered autistic. During the 1990s, Westernchild psychiatry established autism as a broad spectrum comprising different subtypes, eachdefined by pervasive impairments (meaning “present throughout”) yet diagnostic criterianonetheless maintained a distinction between intellectual and social impairments. Clinicianstended to apply the label of Autistic Disorder to those children with pervasive impairmentsin intellectual, linguistic, and social domains, and applied the term Asperger’s Disorder tochildren with impairments in social interaction and the presence of repetitive and stereo-typed behavior patterns, but apparent average or above average intelligence and no clinicallysignificant delay in language acquisition. For the Korean mothers, however, intelligence,even when manifested in ways deemed socially inappropriate, provides evidence against anyform of PDD.

In the same 2008 interview reproduced in the previous section, Eun-Kyung distinguishesclearly between social and the intellectual deficits of autism. Hee-Jong replies by explainingthat her son’s stereotyped and repetitive behaviors (one of the three components in the triadof impairments the DSM-IV [1994] requires for an autism diagnosis), and his intellectualchallenges, are the consequence of a lack of curiosity.

Eun-kyung. The important thing is it’s not a learning disorder.Hee-jong. Then later he was diagnosed with a “2nd level developmental disorder.” The doctor spent only 40

minutes with my child. The problem is that my son just has difficulty concentrating. That is nothard to take care of! He moves his hands and fingers in the air because he’s just not interested inanything, in learning something. He is not curious.17

Another mother involved in the same discussion, He-ran, sought to minimize her son’sautistic tendencies by emphasizing his attachment to her, and in response Hye-yeon gener-alizes from her own son to others to make the argument that autistic children are fragile.Hye-yeon reaffirms the separation of the social and the intellectual and also echoes Koreanmothers’ tendencies to explain ASD as the result of environmental insults, such as familystressors.

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He-ran: When my son was two years old he couldn’t sleep. He was just too sensitive to everything becauseI was so tired during my pregnancy. Anyway, I took him to the doctor. The doctor told me to goout of the room and leave my son with him. My son started to cry before I even closed the door,so the doctor said, “He does not have autism.”

Hye-yeon: Children with autism have an unstable environment, like economic problems, divorce, so it is easyfor children to break. Children with autism are very cute but they are sensitive and easy to break.

Another woman at the same interview, Soo-kyung, the mother of an 11-year-old boy,asserted that her son is “on the border” because his intelligence approaches the genius level.According to her, her son’s therapist, a prominent psychiatrist at Yonsei University, said thather son has a “tendency” toward autism but that it is not possible for him to be autistic. “Thedoctor told me he is too smart [to be autistic]; he can be like a computer genius.” Indeed,mothers find the possibility of genius appealing. For them, what lies beyond one side of theborder is not just normalcy, but the potential for a child to become the next Bill Gates.18

Joo-hyung’s mother, however, was concerned with a different side of the border. For her,what lies beyond the border is intellectual disability. After reading U.S. websites that sug-gested autism is a form of brain damage caused by toxins and heavy metals, she consideredtraveling to the United States for help. She asked if we could help her obtain a chemical agentshe read about on a U.S. website, a compound called DMSA (dimercaptosuccinic acid), usedto treat severe lead poisoning. She feared that without DMSA her son’s symptoms mightworsen. Kyung-suk, whom we met through the Parent Cooperative Support Group andwhose child was, at the time, severely impaired and diagnosed with autism, was also con-cerned with this side of the border. In a group session in which she introduced herself tonew members, she said, “Ajin’s and Mi-ok’s sons are at the border. But my son, well, he’s juston the wrong side of the border” (May 21, 2005). Kyung-suk, like many other mothers, wasconscious that “the border” implied a frontier. The area beyond “the border” is a dangerous,and little desired zone, the area of severe impairments, the possibility of being declared dis-abled or mentally challenged, and consequently incompetent. Kyung-suk’s choice of wordsreflects her way or referencing and understanding her son’s condition. Instead of wordingher son’s condition through the label of autism, she used “the border,” conscious of thedivide that the border creates.

Min, a boy in elementary school in Seoul, was diagnosed with Asperger’s Disorder whenhe was in the first grade. His mother suspected there was something wrong, given Min’ssocial difficulties, but because of his obvious intelligence, many mothers discouraged herfrom seeking expert help. Indeed, when Min’s mother spoke about him, she blamed someof his troubles on his intelligence. In her view, Min was at times more intelligent andknowledgeable than his teacher. He could not control the impulse to note the teacher’sfailings.

Min has always been bookish and had a way of speaking his mind [hal mal da haneunseongkyok]. Sometimes, he would raise his hand and correct the teacher when he thoughtshe was doing something wrong. In situations like this, most other kids would know

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it’s best to feign ignorance, and do as the teacher says. But Min wasn’t like that, and italways got him into trouble . . . [May 8, 2008]

Min’s mother went on to explain that the teacher was so concerned about Min’s effronterythat she was unable to recognize his intelligence.

The teacher would pick on him, scold him in front of the whole class saying he had norespect for elders. The more he would think that he was right and she wrong, the moreshe scolded him, and the more quickly he would have a tantrum. You can imagine whatthe teacher did: she called me practically everyday, and in her tone I could sense that shethought it was my fault, that I was being too indulgent a mother. I tried to reason withher, giving her tips on how to deal with him before he exploded, but she ignored themall. Despite having a job, I went to the school twice a week. I cleaned [the classroom],talked with and listened to the teacher, even wrote her notes, but she refused to see me.To her, Min was an unruly, disrespectful, arrogant child who thought he could do as hepleased because he was a math wiz. [May 8, 2008]

From his mother’s perspective, minor violations of social rules spiraled out of control andled to a breach of etiquette and confidentiality on the part of the teacher.

On one of my shorter workdays, I was cleaning the classroom after the kids had gonehome, and I found the notes I had sent to her lying on her desk, for all to see. Notes onmy child’s eccentricities and how to deal with them! No wonder all the other mothersknew so much about him. He became the “problem child” [munje-ah] of our grade.Then some other mothers complained to me that Min was violating their children’srights to learn [hakseub-gwon]. Imagine that. Such elaborate words to tell me that Minwas disrupting the classroom. [May 8, 2008]

Min’s mother is one of the few mothers we interviewed who had taken her son to a childpsychiatrist to get a formal diagnosis, and who did not openly resist a diagnosis on the autismspectrum. Most of the mothers we interviewed reported that their children were reachingthe school’s academic goals and therefore avoided seeking any clinical assessments; theyfeared that a diagnosis would become known to the school and that the teachers would thendiscriminate against their children. When he was in the first grade, a university-based childpsychiatrist diagnosed Min with “mild Asperger’s syndrome” and “possibly ADHD.” By theend of his first year, Min was taking a prescribed psychotropic medication, although hismother cannot recall the name of the drug. He did not blend in with his class at school andword of his unruliness spread quickly through the network of mothers within the school andat Min’s mother’s apartment complex.

Stating her reasons for seeking a diagnosis, Min’s mother said,

I could not not go. He was getting good grades, but was always in trouble. When he wasin kindergarten and I worried [that he might have a serious condition], other motherswould say, “Oh, but no, he’s so smart. He can’t have a problem. But as a mother, youjust know.” [May 8, 2008]

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Her words are telling because they are representative of many mothers’ opinion that as longas a child performs well academically (in Min’s case, it was knowing his multiplication tableand all the Chinese characters in the popular 13-volume comic-book Mabeob Cheonjamun),he does not have a “problem.” This is one reason so many children with developmentalchallenges in Korea receive a first diagnosis in the fifth and sixth grades, several years aftermothers themselves recognize developmental problems. Some mothers of border childrenthink of them as “child geniuses” (kkoma cheonjae) and may seek help only when the situationin the classroom has become unbearable for both the child and the mother, and occasionally,at the urging of the teacher.

Min’s mother enrolled him in a social skills therapy program outside of school, but mostother mothers that we interviewed addressed their children’s special needs by focusing theirefforts on academic achievement, or what Koreans today call “education fever” (Seth 2002).Stressing grades rather than social skills is, in one mother’s own words, “a desirable option”(joeundaean) because it “raises the profile of the child” (aieui wuisangeul nopida). Anothermother put it more bluntly, “If he gets good grades, then other students won’t be able totease him, and it will make other mothers jealous.” Good grades do not bring all the featuresof normalcy, but they do defeat other children and their mothers. Good grades, in otherwords, are a means to tilt the child more to the “right side” of the border.

Parental attention, our interviewees suggested, shifts from the social to intellectual just aselementary school begins. As one informant said, in our response to our request for adviceabout implementing the epidemiological study,

Don’t try to get surveys for children older than third graders because parents of olderchildren do not care about sociality. The parents of 1st graders watch their kids carefully,whether they get along with friends, but as they get older the parents are only concernedabout learning and grades. [November 18, 2007]

In our interview with parents of children with the symptoms of ASD, the mother of Sang-ho,a fourth grader, said defensively, “Our children might be border children, but it’s just thatthey develop differently. Normal kids (botong aideul) develop social skills before acquiringintellectual skills. Our kids develop intellectual capacity and then social skills” (March 6,2009). In other words, only their social skills are on the border, and social skills are, in thesemothers’ views, less important to a child’s future than intellect. A child who can succeedacademically can acquire status within his peer group and within the school communityin general. Although some mothers, like Min’s, will make a concerted effort to addressbehavioral problems, others will focus almost exclusively on academic achievement untilchildren are much older, when it may prove impossible to ignore the child’s social difficulties.Although it is perhaps true that parents everywhere in the world recognize and appreciateislands of aptitude in their children—a child may be a mediocre athlete but an excellentpianist—the choice between the intellectual and the social in Korea is a choice not betweenabilities but between a conception of the normal (academic success) and the stigmatized(academic mediocrity or failure). Moreover, the mothers are not simply recapitulating or

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mirroring the DSM PDD-NOS category, or the concept of the autism spectrum, in adifferent language. PDD-NOS is pervasive. The border isolates a single domain that, intheir view, is simply delayed.

What defines the normal or the stigmatized is thus determined largely by the perceptionsof mothers of “normal” or typically developing children. Yon-Ha, the mother of a “normal”first grader in Ilsan, said that most mothers who were involved in school activities knewwho the “problem children” were—those with “unruly behavior” (mal an deudneun got). Sheblamed the children’s problems on the mothers’ childrearing practices, and to illustrate thepoint she spoke about one particular child, and his mother, Song-hi.

I saw the [mother and child] in the [apartment] playground before they [her son andthe problem child] enrolled in the school [in the first grade]. The child was throwingsand on children and running here and there, and the mother would just run after him,but not actively [jeokkeukjok-euro]. Really, she seemed like she didn’t care. [February 4,2009]

One of the researchers subsequently interviewed Song-hi, who said of her son: “I used tothink if I pushed him further, he would do better. I even held him back from elementaryschool for a year [so he could mature].” But it was her son’s academic performance thatchanged the way Song-hi looked at her son. As his intellectual competence came intoquestion, she reluctantly considered that he might not be on the border after all, but on thewrong side of the border. “Now I think he may not be on the border,” she said. “He mighthave mental retardation.” During the interview, Songhi seemed defeated, upset that “theborder” was no longer available to her (February 20, 2009).

Min’s mother’s horror on finding her letters exposed echoes another story conveyed in ourinterviews. Dong-ik was in the second grade when his teacher began to complain abouthim. But because she was reluctant to tell Dong-ik’s mother about her concerns, for fearof hurting her feelings and getting involved in a difficult power struggle, she began to tellother mothers. Soon a rumor spread that the teacher would quit her job unless Dong-ik wastransferred to a different school. Dong-ik’s mother claimed she had no clue anything waswrong. “The teacher gave me positive information about him, that he was good at this andgood at that,” she said. One weekend, she recalled, several mothers came to her house anddemanded she send Dong-ik to another school.

I was stunned. The teachers never said anything to me. One day several moms showedup at my apartment and said, “You need to send him to a different school. We don’t wanthim here anymore. He is making it difficult for our children to learn.” I was devastated.I thought I wouldn’t do anything but how could I face the parents at school? [November18, 2007]

She relented and transferred Dong-ik. Another mother, who said that her son was bul-lied in school, reported that her son’s teacher, disgusted by his frequent nose-picking,urged the other students to “discourage” the habit. In her view, the teacher had effectively

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authorized the class to bully him. The teacher had not previously informed her of anyconcerns.

It is not surprising that neither of these two mothers had heard from the school about prob-lems with their sons. Because the school system requires docility, conformity to authority,as well as academic achievement, gossip revolves around students who stand out, and es-pecially those who stand out by violating the norms. Two teachers discussed the behaviorof one student who, in their view, was unable or unwilling to comply with the rules of theclassroom:

Je-suk: The child [on the border] would just get up during class and roam around the building.[February 9, 2009]

Hyun-sook: I don’t think he has a mean streak, but he would pick up the pencil case of his jjak [the studentseated beside him, as students sit in pairs] and repeatedly throw it on the floor, despite his jjak’spleas to stop. [February 9, 2009]

These students, who teachers describe as both border children and “unruly children” (malan deudneun aideul), stand out because they “disrupt the flow of study (sueobeui heurumeulbanghaehada).”

In discussing the role that school discourse plays in generating language about conformity,Danforth and Navarro state,

although the medical discourse provides the primary conceptual and linguistic frame-work of the disorder itself, the school discourse seems to supply the ideological rationalethat fuels parent concerns. School discourse (including teachers, administrators, otherschool personnel, parents and members of the community), must, in some way, handlethe dual institutional priorities of behavioral conformity and academic achievement.[Danforth and Navarro 2001:173]

Indeed, behavioral conformity is so important to Korean teachers that children with signif-icant functional impairments who are nonetheless docile and quiet may not be flagged asin need of special education services. Almost all teachers we interviewed blamed mothersof border children for not actively seeking help but also acknowledged that even if thesechildren did receive formal diagnosis, it might not make much difference to a child’s develop-ment, given the paucity of treatments and services. One teacher related that, as long as theirgrades did not suffer, she was willing to tolerate border students in her class. When askedto characterize the border, teachers used both the terms “maladjusted to school” (hakkyobujeokeung-ah), and “border children” (gyonggye-seon aideul). We note that teachers usedthe former term—a quality—as an adjective to characterize children with normal to loweracademic achievement, but used the latter term to objectify a quality as a particular categoryof child who lacks social skills, but excels academically. For teachers, the concept of “the bor-der” was a means of classifying a certain “type” of student without having to specify exactlywhat was wrong with them. Teachers also stressed that excellence in academic achievementtilted the child over the border toward “normalcy,” thus permitting the undiagnosed borderchildren to remain in mainstream classrooms without special education supports. In other

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words, academic achievement overrides the social impairments that initially informed thelabel of the border.

Chronicity and Recovery

Many mothers seek to avoid a diagnosis for as long as possible because they view autismas chronic. Jae-Hoon’s mother affirms this view and provides a theory of causation thatattributes autism to the prenatal environment. She said:

When I told my mother-in-law that Jae-Hoon might have autism, she hung up thephone. About an hour later, she called back and told me to go to the hospital wherehe was born. “Maybe they gave you the wrong baby. You have to check!” I think hebecame autistic because of some kind of shock while I was pregnant and sometimes Itry to shock him out of [autism] by pushing or hitting him. I always dream that he willwake up in the morning, smile, and say good morning, like an ordinary boy. I just can’tgive up. I was afraid if he was diagnosed with autism it would be like giving up and hewould stay autistic. [November 10, 2009]

Jae-Hoon’s mother is not usual. Mothers generally understand ASD to be genetic in ori-gin, a view shared by mainstream scientific communities throughout the world, or to haveoriginated during the formation of the child in the womb. Because mothers also associategenetics with permanence (and heredity), they see ASD as a fixed disorder for which thereis neither cure nor amelioration. The cultural solution, and one that vexes many mentalhealth care workers in Korea today, is a tendency for Koreans to see the symptoms ofASD as something other than ASD: namely, a group of temporary symptoms caused byenvironmental factors such as poor parenting or, as Jae-hoon’s case suggests, a stressfulprenatal environment. Indeed, Koreans frequently attribute children’s disabilities to poortaekyo (prenatal practices) with the potential to negatively affect the health and developmentof unborn babies (Cho et al. 2000). The concept of tae kyo refers to the total relationshipa mother forms with her unborn child and can thus include all prenatal experiences affect-ing the fetus, such as the mother’s mood, loud verbal conflicts, excessive noise, or poordiet.

For these reasons, many children in Korea who might likely be diagnosed with ASD in theUnited States are diagnosed instead with an attachment disorder—more specifically, theDSM diagnosis of Reactive Attachment Disorder (RAD)—which, in Korea, places blameon the mother for failing to create a proper attachment with the child (Hong 2006). RADis pejoratively referred to as “lack of love” (aejeong kyolpib), a term that parallels the olderU.S. concept of the “refrigerator mother.” The DSM stipulates that a diagnosis of RADshould be made only when there is evidence of pathological caretaking. However, interviewswith Korean mental professionals, especially those without training in the United States,show a strong bias toward diagnosing an attachment disorder in children exhibiting the triadof impairments associated with autism especially when the clinician believes the motheris disengaged from her child. In Korea, some clinicians believe that RAD is a condition

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that mimics ASD (Hong 2006; Shin et al. 1999; cf. Grinker 2007). Mothers may accept thediagnosis of an attachment disorder and seek psychiatric treatment for their inability to relateproperly to their children. They may accept the diagnosis of RAD for several reasons. First,the etiology underlying the diagnosis removes from the other family members, especiallytheir other children, the risk of passing on the condition to their own children. Second, if itis the mother who is ill, not the child with the symptoms of ASD, then there is a chance forrecovery. Third, the diagnosis of RAD seems logical to Koreans who believe that Korea’srapid social changes, including the increasing number of mothers who work full time outsideof the home, are threatening social connectedness.

The genetic model also means that any incidence of ASD threatens to impugn the family lineand threaten the marriage prospects of the autistic person’s relatives. Mothers we interviewedrepeatedly confounded genetics and heredity, and had little idea that a significant percentageof genetic conditions, including ASD, are the result of de novo genetic mutations, that is,mutations that are not inherited from either parent. Furthermore, many of the parents weinterviewed who contemplated autism as a label for their children ultimately rejected it ifthey could not find a history of it in the extended family.

These two aspects of ASD—permanence and genetics—put mothers in a difficult position.Mothers must either accept blame for causing autism in their children or accept that they havea child with a permanent condition that stigmatizes the family. Any diagnosis is thus a double-edged sword. Mothers may want a diagnosis to alleviate their anxiety and help them with aplan of action, but they do not want a diagnosis that will stigmatize them and their children.The confusion over the diagnosis and the causes of the triad of impairments that constituteautism leads parents to question the accuracy of clinical assessments. Some children hadreceived at least three different diagnoses from an array that included ASD, ADHD, Non-verbal Language Disorder, Anxiety Disorder, Obsessive-Compulsive Disorder, ReactiveAttachment Disorder, Emotional Disorder, and Conduct Disorder. Mothers in the ParentCooperative Support Group joked about how the most highly respected child psychiatrists inKorea consistently diagnosed the same disorders: “Dr. L. diagnoses ‘Non-verbal Languagedisorder,’ Dr. S. diagnoses RAD, and Dr. K. diagnoses ASD.” The joke was that eachclinician had expertise in only one specific disorder and so gave every patient the samediagnosis. In addition, for these mothers, the lack of a firm scientific basis for distinguishingor classifying developmental disorders, and the lack of a biomarker (genetic or otherwise),undermined the authority of medical discourse and validated their own perspectives, someof which, like the now discredited view that vaccines are linked to autism, they derived fromU.S. websites.

Conclusion

It was not our intention here to comment on the universality of ASD symptomatology but,rather, to show the dynamic social construction of the behavioral features that constitutea local diagnosis. The Korean case demonstrates a point articulated by Andrew Lakoff,

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that “psychiatry, whose objects of knowledge emerge in the encounter between patients’subjective reports and clinicians’ interpretive schemes, has had a difficult time shifting thedisorders under its purview into stable things in the world” (2005:2). Despite the effortsby clinicians and doctors to validate diagnostic criteria through the various editions of theDSM and the scientific field trials that precede them, scientific knowledge about mentaldisorders is not universally accepted, and the classifications within the field of psychiatry aredynamic.19 To illustrate this point, one need only look at the number of older adults recentlydiagnosed with autism in North America, sometimes decades after they were diagnosed withmental retardation or a seizure disorder as children, before autism was first described orentered medical usage.20

Mothers we interviewed in Korea are unwilling to yield to the objectification entailed inpsychiatric labeling, especially given the fact that, for diagnosticians, children are movingtargets, often changing very quickly as they grow. Korean mothers recognize this capacityfor change and hold out hope that their children will achieve the social skills necessaryto succeed in higher education and beyond. Moreover, given the current inadequacies ofKorean special education services, and the stigma associated with autism, parents embracea term that suggests categorical instability and is, to some extent, an indigenous analogue tothe DSM NOS or the phrase increasingly popular among U.S. parents, “on the spectrum.”From these Korean mothers’ perspectives, border children do not have ASD. They do nothave ASD because they attend regular schools. They do not have ASD because they appearto be meeting the intellectual goals their society has set for them, and in some cases thesechildren are more skilled at certain activities, like mathematics, than their unimpaired peers.Moreover, they do not have ASD because no one else in the family has ever been autistic.For their part, Korean clinicians are hesitant to talk of the border because it has no scientificor clinical status, and prefer instead to speak of tendencies toward autism or other disorders,like RAD that have been codified by the APA or the WHO.

In this article, we consider the role that teachers, schools, and families play in determiningmothers’ management of their children. We note mothers’ fear that disclosure of ASD willhave a negative impact on their children’s education. They fear that other mothers willprevent their children from playing together and that their families will become a topic ofgossip. Korean mothers’ subjectivity is woven into their children’s academic performance. Amother whose child cannot attend an after-school academy, for instance, cannot participatein the networks of women who wait outside to pick up their children or get together forsocial functions. Social acceptance, while seldom acknowledged as a primary goal, is asimportant as the more frequently stated academic goals because so much more is at stakethan just the child. What happens to the child happens to the mother. If the child is exiledand stigmatized, so is the mother.

Yet the desire for social acceptance and academic achievement is part of a vicious cycleaffecting diagnosis, services, and advocacy. As we show, in South Korea, where there arefew opportunities for special education, or even accommodations, in K–12 classes, the risksfor the family of a diagnosis of ASD, or a learning disability, can outweigh the potential

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benefits. Because advocacy requires parents to disclose a highly stigmatizing disorder, theytend to resist diagnoses of any sort of developmental disorder and, in comparison with othercountries, including those in South and East Asia, there is less robust advocacy for specialeducation reform (Park 2002). If no one is willing to disclose a diagnosis, there will be nopressure to build services; and without availability of services, there is no incentive for adiagnosis.

Of course, cases on the border of any psychiatric diagnosis anywhere are always the mostdifficult for researchers to classify, clinicians to understand, insurance companies to insure,and families to accept. As anthropologists, we are not prepared to answer the obviousquestions this situation ultimately raises: Should children on the border of ASD be diagnosedwith ASD? Does mainstreaming without special accommodations help children to succeed?Are mothers’ desires to fit in and reap the benefits of social acceptance in the best interestsof the child? It is clear, however, that mothers are engaged in a balancing act betweenpotential costs and benefits. Although the border serves an important function for mothers,lessening the pain that would come with a diagnosis of ASD, it produces its own form ofsocial suffering.

Finally, as scholars and journalists continue to focus on psychiatry’s global power, it isimportant to consider the complexity of the relationship between social scientific approachesto mental disorders and the individuals and families that experience distress and seek waysto understand it. Certainly, given the international pressures on Korean mothers to beginthinking about autism as a valid diagnosis, there is good reason to interrogate the goalsand methods of global psychiatry. Parents feel pressure to accept “expert” opinion and feelguilty when they do not seek expert care. However, the emphasis on psychiatry as a form ofsocial control masks the complex relationship between science and society. First, the bulkof scholarly works are macrolevel analyses that focus on systems of power. “Sociologicalcritiques,” Bolton writes, “have a fundamental methodological limitation. What is visiblefrom the perspective of the social sciences are social systems, their structures and functions. . . large institutions involved with problems of health, poverty, and education, for example”(Bolton 2008:90). The focus on macrolevel processes is not surprising, because they are morevisible than microlevel processes or individual experience; discussions among parents in theschoolyard leave few public traces. Yet, we illustrate, the social life of a diagnostic label iscarried out in such places—in apartments, playgrounds, cafeterias, and other ethnographicsites. Second, these works isolate psychiatry from the rest of society, as if communities—or, in this case, mothers—have little agency and are largely passive recipients of expertise.The history of patient and parental advocacy (Epstein 1996), the Haredi’s search for alabel that complies with neither medicine nor religion (Shaked and Bilu 2006), and U.S.mothers’ decision to use “delay” instead of disability, clearly show that this is not the case.Indeed, for many women, action, activism, and resistance are central to the experienceof motherhood (Ryan and Cole 2009). A focus on the ambivalent relationship betweenpsychiatry and a group of Korean mothers thus helps to show not only that science and societyare mutually constitutive but also that there is always a place for ethnographic research, and

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social science more generally, in critical studies of psychiatry and the social life of a psychiatricdiagnosis.

ROY RICHARD GRINKER, Ph.D., is Professor of Anthropology, George Washington Uni-versity, Washington, D.C.

KYUNGJIN CHO, Ph.D., is Professor of Applied Culture, Cyber University of Korea, Seoul.

Notes

Acknowledgments. The authors would like to thank Nancy Abelmann, Tamara Daley, Savannah Feterrolf,Janet Keller, Adrienne Lagman, and four anonymous peer reviewers for their insightful and constructive criticism.All shortcomings are our own. Research for the article was funded in part by the Autism Speaks Foundation.

1. The parallel to this view in the United States is the popular argument among many parents of autistic childrenthat autism is a treatable biomedical or “whole body” disorder rather than a psychiatric condition, which is oftenassumed to be permanent. For a history of this movement see Silverman (2011).

2. Arabic numerals (DSM-5) will replace the Roman numerals (DSM-IV).

3. It should be noted, however, that despite the higher prevalence estimate there is no evidence to date thatKoreans actually have more ASD than any other population. The higher prevalence estimate can be attributableto the general population screening method, which the authors of the epidemiological study suggest would yieldhigher estimates if used in the United States. In other words, U.S. Centers for Disease Control and Preventionestimates, based solely on records reviews, underestimate the prevalence of ASD (Kim et al. 2011).

4. In 2009, prior to the publication of the epidemiological study, the media reported on an initiative in the suburbof Goyang, stimulated in part by an epidemiological project carried out by Kim and Grinker, to screen first gradestudents for developmental and learning delays. The headline of one the largest Korean national newspapers, read“Goyang Leads the Way by Treating Children with Emotional Disorders.” The text stated “due to changes in thefamily and social environment, children with emotional disorders such as ADHD, autism, and learning disorder areon the increase.” The article argued that childhood psychiatric disorders, including ADHD and ASD, are rootedin emotional problems and caused by social changes such as increases in the divorce rate and economic hardship.Neither of these assertions was supported by scientific research, the stated goals of the epidemiological project, orthe off-shoot screening program documents (Joongang Daily 2009).

5. The first autonomous division of child psychiatry was established in 1981 at what was then Korea’s largest andmost prestigious university hospital, Seoul National University Hospital. This remains one of only two medicalschools in Korea that offer a fellowship in child psychiatry (Seoul National University, Seoul National UniversityPublishing Committee for the Historical Biographies of Medical Doctors in Korea 2008).

6. The BASC-II questionnaire has only recently been translated and is currently undergoing clinical field trials inKorea (Song et al. 2011).

7. The research protocol was approved by the Institutional Review Board of the George Washington University.

8. Translations of the interviews from Korean to English were made by Kyungjin Cho.

9. Development plans for the creation of the city on a group of former rice fields and empty lots were approved in1989. Residents began moving into Ilsan in 1992 (www.goyang.go.kr).

10. Names used in this article are pseudonyms.

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11. Parents we interviewed stressed that participation in the after-school academies is essential for children becauseonly by studying in the evenings will they have the opportunity to enter an excellent university, one that will brandthem for future career success. Parents bemoan the emphasis on early education as a kind of “torture,” but feelthey have little choice. As one mother put it, “If I did not have my child go to the academies, people would callme a bad mother.” Although competition for academic achievement is fiercest in high school, as children preparefor the college-entrance examination, practices that prepare children to become successful students begin early, asKorea’s much-discussed early education fever demonstrates (Seth 2002).

12. Almost all children attend group tutoring sessions (approximately $160 per month) or private sessions ($300per month each) in as many as four or five after-school programs, or hakwon (academies), which can total morethan $1,500 per month. A typical family will provide group English lessons to each child about eight times amonth. Private English classes cost exactly twice as much, or about $320 per month. Music lessons are another cost.Teacher and tutor gifts start at about $100 per year (and sometimes involve exorbitant gifts like stereos, computers,and plasma TVs) and the minimum PTA fee is about the same. Parents also frequently subscribe to services thatmail the children extra homework materials to enhance the school-based education. I have yet to meet a family withschool-age children that did not have one of these subscriptions. All of these extra expenses were illegal during theearly and mid-1980s, under the regime of President Chun Doo-Hwan, because the government didn’t want thewealthy to have such a clear advantage over the poor. Parents still hired college students to tutor their children, butit was all done under the table. Today, the afternoon traffic is dotted with the hundreds of small yellow hakwonbuses, like New York taxis, taking children to their after-school programs.

13. This type of volunteer system presupposes that mothers’ time and labor are available on an ongoing basis, andthus naturally excludes the participation of working mothers. Working mothers have been vocal about this typeof exclusion, as well as the pressure this system exerts on working women. A newspaper feature in the JoongangDaily relates mothers’ burden of having both to work and not adequately participate in school activities with thedramatically dwindling birthrate of Korea. The newspaper urges the school system to get rid of “classes that endmuch earlier than kindergartens [around noon], parent-teacher conferences that are convened during daytime,frequent cafeteria volunteering and cleaning tasks—all bad practices that bring tears to the working mothers”(Joongang Daily 2010).

14. Yon-hwa, one of our interviewees, whose child participated in the social skills program, said she “practicallylived” (guoeui hakkyo-seo sareo) at the school to get the teacher to show more interest in her child:“I am a member of the Green Mothers Association Pedestrian Traffic Monitor Group (noksek omoni-hoe), so whenit is my week, I show up every morning at 8 o’clock. I have to clean the classroom every two weeks. Sometimesanother mother will ask me to fill in for her when she can’t make it. I’m glad to do it.” [September 18, 2008]

15. Wangdda is the abbreviated form of the phrase wangchang ddadollinda, meaning “getting the runaround exces-sively; being left out in the cold.” The term is also used to describe a passive-aggressive bullying, in which classmatesor school staff harm a child by ignoring him or her.

16. Suda is a gendered term that refers to playful talk or banter among women. Suda ddeolgi, that is, to engagein talk, denotes intimacy but not always trust or sincerity. For an analysis of women’s talk in South Korea, seeAbelmann (2003).

17. “2nd level developmental disorder” is one of the Korean government’s official classifications for developmentaldisorders. The classification for developmental disorders in Korea’s Welfare Law for the Disabled is based on theWHO International Classification of Diseases-10. Developmental disorders comprise three levels depending onthe severity of intellectual impairment, aberrations in development, and dependence on others for activities of dailylife (ADL). According to the Korean Welfare Law for the Disabled, a diagnosis of a second-level developmentaldisorder permits a child to receive government benefits, including therapeutic interventions.

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18. In the social skills program group, mothers named both Bill Gates and Albert Einstein as “border children”who had successfully “overcome their condition.”

19. Homosexuality, for example, was for the APA an “official” psychiatric diagnosis until the 1970s.

20. Bishop and colleagues (2008) found in a sample of adults with a history of developmental language disordersthat as many as 32 percent had an undiagnosed ASD.

References Cited

Abelmann, Nancy2003 The Melodrama of Mobility: Women, Talk, and Class in Contemporary South Korea. Honolulu: Univer-

sity of Hawai‘i Press.American Psychiatric Association

1952 Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: American Psychiatric Associa-tion.

1968 Diagnostic and Statistical Manual of Mental Disorders. 2nd edition. Washington, DC: American Psychi-atric Association.

1980 Diagnostic and Statistical Manual of Mental Disorders. 3rd edition. Washington, DC: American PsychiatricAssociation.

1987 Diagnostic and Statistical Manual of Mental Disorders. 3rd edition, rev. Washington, DC: AmericanPsychiatric Association.

1994 Diagnostic and Statistical Manual of Mental Disorders. 4th edition. Washington, DC: American PsychiatricAssociation.

In press Diagnostic and Statistical Manual of Mental Disorders. 5th edition. Washington, DC: AmericanPsychiatric Association.

Autism and Developmental Disabilities Monitoring Network2007a Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network,

Six Sites, United States, 2000. Morbidity and Mortality Weekly Report, 56 (SS-1), February 9, 2007:1–11.2007b Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Net-

work, Fourteen Sites, United States, 2002. Morbidity and Mortality Weekly Report, 56(SS-1), February9: 12–29.

Bagatell, Nancy2010 From Cure to Community: Transforming Notions of Autism. Ethos 38(1):33–55.

Bettelheim, Bruno1967 Infantile Autism and the Birth of the Self. New York: Free Press.

Bishop, Dorothy V. M., Andrew J. O. Whitehouse, Helen J. Watt, and Elizabeth A. Line2008 Autism and Diagnostic Substitution: Evidence from a Study of Adults with a History of Developmental

Language Disorder. Developmental Medicine and Child Neurology 50(5):341–345.Bolton, Derek

2008 What is Mental Disorder? An Essay in Philosophy, Science, and Values. Oxford: Oxford University Press.Carr, E. Summerson

2010 Enactments of Expertise. Annual Review of Anthropology 39:17–32.Cho, Su-Je, George H. S. Singer, and Betsy (Mary) Brenner

2000 Adaptation and Accommodation to Young Children with Disabilities: A Comparison of Korean and KoreanAmerican Parents. Topics in Early Childhood Special Education 20(4):236–249.

Chung, Byung-Ho2008 The “Education Game” and Meritocracy. Paper presented at the Annual Korean Anthropological Asso-

ciation Meetings, Beyond Illusion and Fear: Education in the Age of Super-Competition, Seoul, Korea,November 14.

Chung Wonyong, NaMi Lee, and Bou-yong Rhee2006 The Introduction of Western Psychiatry into Korea: Psychiatric Education in Korea during the

Forced Japanese Annexation of Korea (1910–1945). Korean Journal of Medical History 15(2):157–187.

Conrad, Peter2007 The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders.

Baltimore: Johns Hopkins University Press.

72 ETHOS

Costello, Elizabeth J., and Susan Janiszewski1990 Who Gets Treated? Factors Associated with Referral in Children with Psychiatric Disorders. Acta Psy-

chiatrica Scandinavica 81(6):523–529.Daley, Tamara

2002 The Need for Cross-Cultural Research on the Pervasive Developmental Disorders. Transcultural Psychi-atry 39(4):531–550.

2003 From Symptom Recognition to Diagnosis: Children with Autism in Urban India. Social Science andMedicine 58(7):1323–1335.

Daley, Tamara, and Marian Sigman2002 Diagnostic Conceptualization of Autism among Indian Psychiatrists, Psychologists, and Pediatricians.

Journal of Autism and Developmental Disorders 32(1):13–23.Danforth, Scot, and Virginia Navarro

2001 Sampling the Social Construction of ADHD in Everyday Language. Anthropology and Education Quar-terly 32(2):167–190.

Epstein, Steven1996 Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.

Eyal, Gil, Brendan Hart, Emine Oncular, Neta Oren, and Natasha Rossi2010 The Autism Matrix. Cambridge: Polity.

Gelezeau, Valerie2003 Seoul, ville geante, cites radieuses. Paris: CNRS Editions (Collection Asie Orientale).

Goffman, Erving1986[1963] Stigma: Notes on the Management of Spoiled Identity. New York: Touchstone.

Grinker, Roy R.1998 Korea and Its Futures: Unification and the Unfinished War. New York: St. Martin’s Press.2007 Unstrange Minds: Remapping the World of Autism. New York: Basic.

Grinker, R. R., M. Yeargin-Allsopp, and C. Boyle2011 Culture and Autism Spectrum Disorders: The Impact on Prevalence and Recognition. In Autism Spectrum

Disorders. D. Amaral, G. Dawson, and D. Geschwind, eds. Pp. 112–136. Oxford: Oxford University Press.Hacking, Ian

1999 The Social Construction of What. Cambridge, MA: Harvard University Press.2007 Kinds of People: Moving Targets. Proceedings of the British Academy, 151:285–318.

Healy, David2004 Let Them Eat Prozac: The Unhealthy Relationship between the Pharmaceutical Industry and Depression.

New York: New York University Press.Hong, K. M.

2006 Impacts of Rapid Social and Family Changes on the Mental Health of Children in Korea. PsychiatryInvestigation 3(1):6–25.

Jeong, Hae Ryong, and Eul Yong Jeong, dirs.2004–05 Precious Family [Bumonim Jeonsangseo]. 68 series. KBS Production. Seoul.

Jeong, Yoon-Chul, dir.2005 Marathon. 117 min. Cineline. Seoul.

Joongang Daily2009 Koyang Leads the Way by Treating Children with Emotional Disorders. March 4: 26.2010 Need to Get Rid of School Preparations that Bring Tears to Working Mothers. September 27:

34.Kanner, Leo

1943 Autistic Disturbances of Affective Contact. Nervous Child 2:217–250.Kaufman, Sharon

2010 Regarding the Rise in Autism: Vaccine Safety Doubt, Conditions of Inquiry, and the Shape of Freedom.Ethos 38(1):8–32.

Kim, Eleana2007 Our Adoptee, Our Alien: Transnational Adoptees as Specters of Foreignness and Family in South Korea.

Anthropological Quarterly 80 (20):497–531.Kim, Young Shin, Bennet Leventhal, Yun-Joo Koh, Eric Fombonne, Eugene Laska, Eun-Chung Lim, Keun-Ah

Cheon, Soo-Jeong Kim, Young-Key Kim, Hyun Kyung Lee, Dong-Ho Song, and Roy Richard Grinker2011 Prevalence of Autism Spectrum Disorders in a Total Population Sample. American Journal of Psychiatry

168(9):904–912.Korea Research Meeting for Asian/Pacific Decade

1997 Policy and Program for Persons with Disability in Korea. Seoul: Kwang-Yoon Seo.Korean Ministry of Education, Science and Technology/Korean Educational Development Institute

2010 Statistical Yearbook of Education. Seoul, Korea. Seoul: Korean Ministry of Education.

BORDER CHILDREN 73

Ladd-Taylor, Molly, and Laura Umansky, eds.1992 Bad Mothers: The Politics of Blame in Twentieth Century America. New York: New York University

Press.Lakoff, Andrew

2005 Pharmaceutical Reason. Knowledge and Value in Global Psychiatry. Cambridge: Cambridge UniversityPress.

Lane, Christopher2007 Shyness: How Normal Behavior Became a Sickness. New Haven, CT: Yale University Press.

Mandell, D. S., M. M. Novak, and C. D. Zubritsky2005 Factors Associated with Age of Diagnosis among Children with Autism Spectrum Disorders. Pediatrics

116(6):1480–1486.Newschaffer, Craig J., Matthew D. Falb, and James G. Gurney

2005 National Autism Prevalence Trends from United States Special Education Data. Pediatrics 115:277–282.

Ochs, Elinor, and Olga Solomon2004 Practical Logic and Autism. In A Companion to Psychological Anthropology. Robert B. Edgerton and

Conerly Casey, eds. Pp. 140–167. Oxford: Blackwell.Park, Jiyeon

2002 Special Education in South Korea. Teaching Exceptional Children 34(5):28–33.Park, So Jin

2007 Educational Manager Mothers: South Korea’s Neoliberal Transformation. Korea Journal 47(3):186–213.Park, So Jin, and Nancy Abelmann

2007 Class and Cosmopolitan Striving: Mothers’ Management of English Education in South Korea. Anthro-pological Quarterly 77(4):645–672.

Ryan, Sarah, and Katherine Runswick Cole2009 From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum.

Journal of Applied Research in Intellectual Disabilities 22(1):43–53.Seo, Deok-Hee

2009 The Profitable Adventure of Threatened Middle-Class Families: An Ethnographic Study on Homeschool-ing in South Korea. Asia Pacific Education Review 10(3):409–422.

Seoul National University, Seoul National University Publishing Committee for the Historical Biographies ofMedical Doctors in Korea

2008 Hankuk Euihak Inmulsa [Historical biographies of medical doctors in Korea]. Seoul: Thaehaksa.Seth, Michael

2002 Education Fever: Society, Politics, and the Pursuit of Schooling in South Korea. Honolulu: University ofHawai‘i Press.

Shaked, Michal, and Yoram Bilu2006 Grappling with Affliction: Autism in the Jewish Ultraorthodox Community in Israel. Culture, Medicine

and Psychiatry 30(1):1–27.Shattuck, Paul T.

2006 The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in USSpecial Education. Pediatrics 117(4):1028–1037.

Shin, Jin Y.2002 Social Support for Families of Children with Mental Retardation: Comparison between Korea and the

United States. Mental Retardation 40(2):103–118.Shin, Y., K. Lee, S. Min, and R. N. Emde

1999 A Korean Syndrome of Attachment Disturbance Mimicking Symptoms of Pervasive Developmental Dis-order. Infant Mental Health Journal 20(1):60–76.

Silverman, Chloe2011 Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton: Princeton University

Press.Solomon, Olga, and Nancy Bagatell

2010 Rethinking Autism, Rethinking Anthropology. Special Issue, Ethos 38(1).Song, Jungeun, Bennet Leventhal, Yun-Joo Koh, Keun-Ah Cheon, Hyun Ju Hong, Young-Key Kim, Kyungjin

Cho, Eun-Chung Lim, and Young Shin Kim2011 Behavior Assessment System for Children, Second Edition, Parent Rating Scale-Children in Korean

Children: Cross-Cultural Aspect and a Potential Screener for Autism Spectrum Disorder. Paper presentedat the meetings of the American Academy of Child and Adolescent Psychiatry, Toronto, September19.

Tredgold, A. F.1947[1908] A Textbook of Mental Deficiency. Baltimore: Williams and Wilkins.

74 ETHOS

U.S. Centers for Disease Control and Prevention2009 Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network,

United States, 2006. Morbidity and Mortality Weekly Report 58(10):1–20.Watters, Ethan

2010 Crazy Like Us: The Globalization of the American Psyche. New York: Free Press.Whitaker, Robert

2010 Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. NewYork: Basic.

Will, M. C.1986 Educating Children with Learning Problems: A Shared Responsibility. Exceptional Children 52(5):411–

415.Young, Allan

1995 Harmony of Illusions: Inventing Post-Traumatic Stress Disorder. Princeton: Princeton University Press.