Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in you... more Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in young South African children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young isiZulu-speaking children with and without autism spectrum disorder and (3) compare symptom profiles across sampling procedures. Measures were translated and adapted into isiZulu and used to evaluate 26 isiZulu-speaking children, 15 children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder. A videorecorded observation of children and caregivers in their home environment was also made. Based on best-estimate diagnoses, 10 children were classified as autism spectrum disorder and 16 as non-autism spectrum disorder. The children with autism spectrum disorder presented with significantly more autism spectrum disorder red flags than the nonautism spectrum disorder group according to parent report and systematic ratings of red flags. Significant correlations between parent report and observational measures of red flags were observed. More red flags were observed during structured evaluations than home observations in the autism spectrum disorder group. Findings provide a foundation for tool translation and adaptation in South Africa
The papers in this collection represent an important step forward in the ethnographic study of au... more The papers in this collection represent an important step forward in the ethnographic study of autism. Their focus on sociality and social context is especially important today as so much of the attention paid to autism in the scholarly literature and in the media concerns advances in neuroscience, cellular and molecular biology, and does not examine the non-medical aspects of autism. The field of genetics, to cite just one example, offers an enormous range of possibilities for using genetic variations to identify the alleles and mutations that influence neurological development. But as the papers in this collection suggest, we can take the medicalized, genetic approach to autism too far, to a point at which a disease construct is so profoundly fetishized that we fail to question the validity of the construct, and to see its cultural constitution. Medicalized approaches to autism, at least as autism is now conceptualized as an expansive spectrum, also risk making a disease out of traits that are likely distributed in varying degrees among the general population, obscuring the positive characteristics of autism that contribute to human diversity and creativity, neglecting the possibility for new forms of sociality to emerge, and diminishing the role that autism can play in forming new social identities.
This paper reviews the literature on early child development among Koreans, with a focus on autis... more This paper reviews the literature on early child development among Koreans, with a focus on autism spectrum disorders (ASD). The literature review of 951 abstracts in English, 101 abstracts in Korean and 27 full articles published from 1994 to 2011 was performed to understand the presentation of and response to ASD in Korean culture. Based on research to date on the identification, description, and treatment of ASD in Korean populations, we argue that at both conceptual and practical levels, early child development and interventions must be understood within cultural context. Culturally informed research on ASD is vital for increasing awareness of the importance of early intervention and the need for educational and psychological services in countries in which autism is stigmatized, misdiagnosed or undiagnosed. J Autism Dev Disord (2013) 43:503-520 507 J Autism Dev Disord (2013) 43:503-520 517
In order to connect with families and influence treatment trajectories, outreach materials should... more In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and post diagnostic care. This paper describes the cultural adaptation and translation of the Autism Speaks First 100 Days Kit into Korean for the purpose of improving autism spectrum disorder (ASD) diagnosis, assessment, and interventions. The goal of this study is to describe a methodology for future cross-cultural adaptations and translations of outreach materials on ASD, using the Autism Speaks First 100 Days Kit as an exemplar. The research involved two stages of qualitative interviews: unstructured individual and group interviews with 19 Korean child health and education professionals in Queens, NY, followed by structured cultural consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.
Little research has been conducted on behavioral characteristics of children with autism spectrum... more Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects-an epidemiologic investigation of 7-to 12-year olds in South Korea and the Early Autism Project, an ASD detection program for 18-to 36-month-old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. Autism Res 2012, ••: ••-••.
In this article, we describe reluctant mothers on the brink of accepting autism spectrum disorder... more 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. We argue 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 domains of child development, in which mothers localize their children's problems as deficits in a discrete area of development, rather than as a global or pervasive impairment; and (3) an opposition between chronicity and 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 has the symptoms of ASD but is academically successful) to form a new kind of child that mothers and teachers increasingly call "border children" (gyonggye-seon aideul). This specific ethnographic inquiry informs debates over the ontological bases for psychiatric diagnoses in children, and the processes through which local institutions, classificatory schemes, expertise, and child behavior shape conceptions of child development.
Abstract In psychology and allied disciplines, autism has been erroneously conceived as a disease... more Abstract In psychology and allied disciplines, autism has been erroneously conceived as a disease that precludes meaningful social behavior. Anthropologists are beginning to address this problem by rejecting the narrow confines of what constitutes human social functioning, and by showing the complex ways in which autistic children and adults participate in and contribute to their societies. At the same time, anthropologists have begun to contextualize public debates about autism prevalence and etiology in historical and cultural processes. This commentary identifies two major disjunctions in contemporary public debates about autism: the first between a depersonalized form of knowledge constructed by science and a narcissistic claim for knowledge that privileges anecdotal, personal experience; the second between a “mainstream” discourse on science and a new discourse on science that explains autism in terms of environmental insults. These new environmental perspectives, especially those that concern vaccine damage, can be situated in late modernity. They mediate between a nostalgic memory of ontological certainty, trust, and authenticity and a postmodern world characterized by a loss of faith in scientific institutions. [autism, sociality, vaccines, advocacy]
Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in you... more Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in young South African children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young isiZulu-speaking children with and without autism spectrum disorder and (3) compare symptom profiles across sampling procedures. Measures were translated and adapted into isiZulu and used to evaluate 26 isiZulu-speaking children, 15 children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder. A videorecorded observation of children and caregivers in their home environment was also made. Based on best-estimate diagnoses, 10 children were classified as autism spectrum disorder and 16 as non-autism spectrum disorder. The children with autism spectrum disorder presented with significantly more autism spectrum disorder red flags than the nonautism spectrum disorder group according to parent report and systematic ratings of red flags. Significant correlations between parent report and observational measures of red flags were observed. More red flags were observed during structured evaluations than home observations in the autism spectrum disorder group. Findings provide a foundation for tool translation and adaptation in South Africa
The papers in this collection represent an important step forward in the ethnographic study of au... more The papers in this collection represent an important step forward in the ethnographic study of autism. Their focus on sociality and social context is especially important today as so much of the attention paid to autism in the scholarly literature and in the media concerns advances in neuroscience, cellular and molecular biology, and does not examine the non-medical aspects of autism. The field of genetics, to cite just one example, offers an enormous range of possibilities for using genetic variations to identify the alleles and mutations that influence neurological development. But as the papers in this collection suggest, we can take the medicalized, genetic approach to autism too far, to a point at which a disease construct is so profoundly fetishized that we fail to question the validity of the construct, and to see its cultural constitution. Medicalized approaches to autism, at least as autism is now conceptualized as an expansive spectrum, also risk making a disease out of traits that are likely distributed in varying degrees among the general population, obscuring the positive characteristics of autism that contribute to human diversity and creativity, neglecting the possibility for new forms of sociality to emerge, and diminishing the role that autism can play in forming new social identities.
This paper reviews the literature on early child development among Koreans, with a focus on autis... more This paper reviews the literature on early child development among Koreans, with a focus on autism spectrum disorders (ASD). The literature review of 951 abstracts in English, 101 abstracts in Korean and 27 full articles published from 1994 to 2011 was performed to understand the presentation of and response to ASD in Korean culture. Based on research to date on the identification, description, and treatment of ASD in Korean populations, we argue that at both conceptual and practical levels, early child development and interventions must be understood within cultural context. Culturally informed research on ASD is vital for increasing awareness of the importance of early intervention and the need for educational and psychological services in countries in which autism is stigmatized, misdiagnosed or undiagnosed. J Autism Dev Disord (2013) 43:503-520 507 J Autism Dev Disord (2013) 43:503-520 517
In order to connect with families and influence treatment trajectories, outreach materials should... more In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and post diagnostic care. This paper describes the cultural adaptation and translation of the Autism Speaks First 100 Days Kit into Korean for the purpose of improving autism spectrum disorder (ASD) diagnosis, assessment, and interventions. The goal of this study is to describe a methodology for future cross-cultural adaptations and translations of outreach materials on ASD, using the Autism Speaks First 100 Days Kit as an exemplar. The research involved two stages of qualitative interviews: unstructured individual and group interviews with 19 Korean child health and education professionals in Queens, NY, followed by structured cultural consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.
Little research has been conducted on behavioral characteristics of children with autism spectrum... more Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects-an epidemiologic investigation of 7-to 12-year olds in South Korea and the Early Autism Project, an ASD detection program for 18-to 36-month-old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. Autism Res 2012, ••: ••-••.
In this article, we describe reluctant mothers on the brink of accepting autism spectrum disorder... more 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. We argue 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 domains of child development, in which mothers localize their children's problems as deficits in a discrete area of development, rather than as a global or pervasive impairment; and (3) an opposition between chronicity and 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 has the symptoms of ASD but is academically successful) to form a new kind of child that mothers and teachers increasingly call "border children" (gyonggye-seon aideul). This specific ethnographic inquiry informs debates over the ontological bases for psychiatric diagnoses in children, and the processes through which local institutions, classificatory schemes, expertise, and child behavior shape conceptions of child development.
Abstract In psychology and allied disciplines, autism has been erroneously conceived as a disease... more Abstract In psychology and allied disciplines, autism has been erroneously conceived as a disease that precludes meaningful social behavior. Anthropologists are beginning to address this problem by rejecting the narrow confines of what constitutes human social functioning, and by showing the complex ways in which autistic children and adults participate in and contribute to their societies. At the same time, anthropologists have begun to contextualize public debates about autism prevalence and etiology in historical and cultural processes. This commentary identifies two major disjunctions in contemporary public debates about autism: the first between a depersonalized form of knowledge constructed by science and a narcissistic claim for knowledge that privileges anecdotal, personal experience; the second between a “mainstream” discourse on science and a new discourse on science that explains autism in terms of environmental insults. These new environmental perspectives, especially those that concern vaccine damage, can be situated in late modernity. They mediate between a nostalgic memory of ontological certainty, trust, and authenticity and a postmodern world characterized by a loss of faith in scientific institutions. [autism, sociality, vaccines, advocacy]
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Papers by Roy Grinker
children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early
signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young
isiZulu-speaking children with and without autism spectrum disorder and (3) compare symptom profiles across sampling
procedures. Measures were translated and adapted into isiZulu and used to evaluate 26 isiZulu-speaking children, 15
children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder. A videorecorded
observation of children and caregivers in their home environment was also made. Based on best-estimate
diagnoses, 10 children were classified as autism spectrum disorder and 16 as non-autism spectrum disorder. The children
with autism spectrum disorder presented with significantly more autism spectrum disorder red flags than the nonautism
spectrum disorder group according to parent report and systematic ratings of red flags. Significant correlations
between parent report and observational measures of red flags were observed. More red flags were observed during
structured evaluations than home observations in the autism spectrum disorder group. Findings provide a foundation for
tool translation and adaptation in South Africa
consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.
children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early
signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young
isiZulu-speaking children with and without autism spectrum disorder and (3) compare symptom profiles across sampling
procedures. Measures were translated and adapted into isiZulu and used to evaluate 26 isiZulu-speaking children, 15
children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder. A videorecorded
observation of children and caregivers in their home environment was also made. Based on best-estimate
diagnoses, 10 children were classified as autism spectrum disorder and 16 as non-autism spectrum disorder. The children
with autism spectrum disorder presented with significantly more autism spectrum disorder red flags than the nonautism
spectrum disorder group according to parent report and systematic ratings of red flags. Significant correlations
between parent report and observational measures of red flags were observed. More red flags were observed during
structured evaluations than home observations in the autism spectrum disorder group. Findings provide a foundation for
tool translation and adaptation in South Africa
consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.