Roy Richard Grinker

Prevalence of Autism Spectrum Disorders in a Total Population Sample

OBJECTIVE Experts disagree about the causes and significance of the recent increases in the prevalence of autism spectrum disorders (ASDs). Limited data on population base rates contribute to this uncertainty. Using a population-based sample, the authors sought to estimate the prevalence and describe the clinical characteristics of ASDs in school-age children. METHOD The target population was all 7- to 12-year-old children (N=55,266) in a South Korean community; the study used a high-probability group from special education schools and a disability registry and a low-probability, general-population sample from regular schools. To identify cases, the authors used the Autism Spectrum Screening Questionnaire for systematic, multi-informant screening. Parents of children who screened positive were offered comprehensive assessments using standardized diagnostic procedures. RESULTS The prevalence of ASDs was estimated to be 2.64% (95% CI=1.91-3.37), with 1.89% (95% CI=1.43-2.36) in the general-population sample and 0.75% (95% CI=0.58-0.93) in the high-probability group. ASD characteristics differed between the two groups: the male-to-female ratios were 2.5:1 and 5.1:1 in the general population sample and high-probability group, respectively, and the ratios of autistic disorders to other ASD subtypes were 1:2.6 and 2.6:1, respectively; 12% in the general-population sample had superior IQs, compared with 7% in the high-probability group; and 16% in the general-population sample had intellectual disability, compared with 59% in the high-probability group. CONCLUSIONS Two-thirds of ASD cases in the overall sample were in the mainstream school population, undiagnosed and untreated. These findings suggest that rigorous screening and comprehensive population coverage are necessary to produce more accurate ASD prevalence estimates and underscore the need for better detection, assessment, and services.

“Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa

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, 5: 201–210.

Korean Culture and Autism Spectrum Disorders

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.

Communities in Community Engagement

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, 5: 201–210.

Reframing the Science and Anthropology of Autism

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. The value of an anthropologically informed approach to autism, in my view, has less to do with relativism—in which we recognize autism as just another form of being, and then appreciate that form for its differences from an assumed norm— than with its ability to unmask the cultural foundations of scientific representations, and to comprehend both the social life of autism, as a construct, and autistic sociality. The experiences of an autistic person—whether his strengths and abilities

Notes on a puzzle piece

Isabel Grinker, 23 years of age, sometimes uses the word “autism” to describe herself and her talents—among them, the ability to assemble jigsaw puzzles. Sometimes she turns the pieces over, picture down, so that she can put the puzzle together by shape instead of image. Inexplicably, there is always one piece missing. She does not say why she has put a piece in her pocket, under a pillow, or in a jewelry box. Isabel’s habit evokes James Merrill’s celebrated poem about the search to complete a puzzle. A missing puzzle piece represents Merrill as a child, “an inchling, innocently branching palm,” but the child also represents the entire puzzle. For him, as for Isabel, and all of us, there always seems to be a piece missing. Life, by definition, is never complete. The image we assemble of ourselves may seem real and coherent at any particular moment, but its shapes and meanings change constantly—perhaps like autism itself, a dynamic puzzle that eludes any solution, a whole that can never be whole. The puzzle piece as a symbol for autism awareness, advocacy, and services is ubiquitous. Indeed, with the exception of the pink ribbon for breast cancer advocacy, we can think of no other image that is so clearly associated with a particular condition. The puzzle piece is now associated largely with the Autism Speaks Foundation and the Autism Society of America, but it was first used for autism advocacy in 1963 by the newly established National Autistic Society (NAS), an organization founded by parents and modeled on the Spastics Society of Children with Cerebral Palsy. The logo (no longer used by the NAS) was designed by Gerald Gasson, parent of an autistic child and member of the NAS board of directors. Gasson superimposed the image of a crying child on the puzzle piece to illustrate both that autism is a baffling condition and that people with autism suffer and do not “fit in” (Allison, 1987). In recent years, the puzzle piece has become a popular and hotly contested symbol in the media, in blogs, and in the world of philanthropy—the Autism Speaks Foundation has trademarked its own blue (perhaps male), anthropomorphized puzzle piece—and the passions the images elicit call out for comment. Autism: The International Journal of Research and Practice recently was asked to defend its use of a puzzle piece on the cover, and the resulting comments ranged from enthusiastically positive about the use of the puzzle piece to represent autism to vitriolic in their disdain for this symbol (http://the-art-of-autism.com/the-autismpuzzle-piece-a-symbol-of-what/). Why does the puzzle piece endure and why does it generate so much discussion and controversy? One way to begin answering this question is to think about autism spectrum disorder (ASD)—the phenomenon to which the puzzle refers—as an explanation for the confusion, and sometimes intense suffering, people experience as they struggle to relate, as individuals, to societies that are constantly changing shape. Certainly, the communities into which autistic individuals are born today are very different from the past, when so many people with autism were given unhelpful diagnoses such as childhood schizophrenia or mental retardation and were often institutionalized; when restricted interests and social and communication impairments were stigmatized, when mothers were blamed for their children’s problems, and when schools and employers could offer them few opportunities. While there is much more that must be done to support people with disabilities, the 21st century, particularly in North America and Europe, offers people with ASD unprecedented possibilities. Just as Merrill’s puzzle stands for the unstable relationship between the individual and the human condition in general, so too is ASD an everchanging assemblage of ideas and practices that, perhaps like any historical construct, is a set of relationships “at once interlocking and in tension” (Williams, 1977). The meanings and values of “autism,” as we now conceive of it, like genetics or economics, or any other construction a society may use to explain human variation, change constantly because societies change. If much of that tension exists between the part (the individual) and its imagined whole (the society in which the individual lives), then a debate about the puzzle piece and its relationship to the puzzle is really a contest over Notes on a puzzle piece 589293 AUT0010.1177/1362361315589293AutismGrinker and Mandell research-article2015

Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children:

This qualitative study aimed to understand how community-level cultural beliefs affect families’ and professionals’ care for children with autism and developmental delays in immigrant communities, as a first step towards promoting early identification and access to early intervention services. The study was part of the larger New York City (NYC) Korean Community Autism Project, which was designed to identify strategies to increase awareness of autism and reduce delays in treatment seeking within the NYC Korean-American community. Our study elicited early childcare workers’ and church leaders’ beliefs about autism and developmental disorders and, in particular, early intervention. We also elicited responses to newly developed outreach materials targeting this community. An inductive approach was used to identify concepts and categories associated with autism. Our study confirmed that discomfort, stigma and discrimination are the prevailing community attitudes toward autism and developmental disorders in the Korean-American community. Families’ and professionals’ understanding of autism and their care for children are affected by these community beliefs. Approaching immigrant communities with general information about child development and education rather than directly talking about autism and developmental disorders is likely to engage more families and professionals in need for diagnostic evaluation and early intervention for autism.

Autism and First-Person Accounts: The Cognitive Problem

This work challenges the underlying assumption, within traditional psychiatry, of certain cognitive deficits presumed to exist in people with autism: namely, subjects’ alleged incapacity to establish a logical categorical relationship between instance and type; part and whole; premises, inferences, and conclusions, etc. The authors draw on first-person accounts by autistic individuals to show that verbal and non-verbal behaviors that can be described as examples of deficit, are, in fact, unconventional ways of giving meaning to objects and experiences. Additionally, the authors draw attention to the fact that the term “cognition”, in the deficit hypothesis, is defined as an intellectual, exclusively logical activity. The accounts analyzed here show cognition to involve the ordering process through which subjects give coherence, regularity, and meaning to creative relationships with the environment. This ordering is pragmatic and its efficacy is related to the original and spontaneous employment of new metaphors and logical strategies.

Who Owns Autism? Economics, Fetishism, and Stakeholders

This chapter outlines the growth of the value of the autism diagnosis in the U.S. from an economic and comparative perspective. The existing international literature on the economics of autism almost exclusively concerns medical and therapeutic costs, estimates of loss of productivity of caregivers, supported employment, and residential care, rather than the dynamic construction of value. In contrast, this chapter focuses on how the economics of autism are linked to the changing concept of autism. The chapter illustrates how the economics of autism goes beyond dollars and their flows to the analysis of how financial interests help constitute not just costs but forms of knowledge. Topics covered include: the rise of therapeutic specializations, the survival of which requires a steady stream of new autism diagnoses; special education litigation, which disproportionately involves cases of autism; and the role of family wealth in diagnosis. These topics help to demonstrate that the concept of autism, as way of organizing a wide-ranging spectrum of individual skills and challenges, has taken on an unanticipated and often masked economic power. The final section of the chapter theorizes autism as a new sacred object, fetishized in the interests of an emerging “autism industrial complex.”

Houses in the Rainforest: Ethnicity and Inequality Among Farmers and Foragers in Central Africa.

This is the first ethnographic study of the farmers and foragers of northeastern Zaire since Colin Turnbulls classic works of the 1960s. Roy Richard Grinker lived for nearly two years among the Lese farmers and their long-term partners, the Efe (Pygmies), learned their languages, and gained unique insights into their complex social relations and ethnic identities. By showing how political organization is structured by ethnic and gender relations in the Lese house, Grinker challenges previous views of the Lese and Efe and other farmer-forager societies, as well as the conventional anthropological boundary between domestic and political contexts.