Olga Solomon

Inclusion as Social Practice: Views of Children with Autism

This study illuminates the social realities of inclusion of 16 high functioning children with autism (HFA) in public schools in the United States. The study suggests that the practice of inclusion rests primarily on unaffected schoolmates rather than teachers, who typically are occupied monitoring academic progress and disciplinary transgressions across a range of children. Utilizing ethnographic observations and video recordings of quotidian classroom and playground activities, the analysis elucidates how classmates employ a range of positive and negative inclusion practices that either integrate or distance autistic children. Ethnographic observations of the study population indicate that the children whose diagnosis was fully disclosed enjoyed more consistent social support in the classroom and on the school playground. The study further suggests that high functioning children with autism exhibit a range of reactions to negative inclusion practices such as rejection and scorn. Such reactions include oblivion, immediate behavioral response, and emotionally charged accounts of disturbing school incidents shared after-the-fact with family members. Significantly, these observations indicate that HFA children can be cognizant of and distressed by others’ derisive stances and acts, despite symptomatic difficulties in interpreting others’ intentions and feelings.

Autism and the Social World: An Anthropological Perspective

This article offers an anthropological perspective on autism, a condition at once neurological and social, which complements existing psychological accounts of the disorder, expanding the scope of inquiry from the interpersonal domain, in which autism has been predominantly examined, to the socio-cultural one. Persons with autism need to be viewed not only as individuals in relation to other individuals, but as members of social groups and communities who act, displaying both social competencies and difficulties, in relation to socially and culturally ordered expectations of behavior. The article articulates a socio-cultural approach to perspective-taking in autism in three social domains: (1) participating in conversational turn-taking and sequences; (2) formulating situational scenarios; and (3) interpreting socio-cultural meanings of indexical forms and behavior. Providing ethnographic data on the everyday lives of high-functioning children with autism and Asperger syndrome, the article outlines a cline of competence across the three domains, from most success in conversational turn-taking to least in inferring indexical meanings. Implications of these abilities and limitations are considered for theoretical approaches to society and culture, illuminating how members of social groups are at once shaped by, and are agents of, social life and cultural understanding.

Limitations and transformations of habitus in Child-Directed Communication

This article offers an alternative approach to paradigms that cast culture solely as a nurturing influence on childrens language development. It proposes a dimensional model of Child-Directed Communication (CDC) to delineate ways in which a communitys habitus may impede the communicative potential of children with neuro-developmental conditions such as severe autism. It argues that certain features of Euro-American CDC are illadapted for autistic children. Due to inertia, caregivers often find themselves unable to transcend the limitations of CDC habitus. Yet, occasionally, a transformation in CDC emerges that more effectively engages children with impairments. The article analyzes one such transformation forged in the niche of a unique mother–son relationship in India and then introduced in the USA.

Narrative introductions: discourse competence of children with autistic spectrum disorders:

This article examines the discourse competence of high-functioning children with autistic spectrum disorders (ASD) to participate in narrative introduction sequences with family members. The analysis illuminates the children’s own efforts to launch narratives, as well as their ability to build upon the contributions of others. Ethnographic, discourse analytic methodology is integrated with the theory of discourse organization and the weak central coherence account of autism. Introductions of both personal experience narratives as well as fictional narratives (from television programs, computer games and other media) are examined. The children were especially competent in the use of stable introductory practices when launching fictional narratives, pre-organized by the media of expression. Their challenge was not in the introduction, but in the narrative co-telling, which often was not globally organized over an extended course of propositions. The heterogeneity of the ASD children’s discourse competence and its implications for discourse analysis are discussed.

Introduction: Discourse and Autism:

which autism organizes discourse, and, in doing so, illuminates certain fundamental underpinnings of discourse competence. Autism is a neurological disorder that hinders social, cognitive, and emotional functioning of affected persons. Although most individuals with autistic spectrum disorders (ASD) suffer from mental retardation, roughly 25 percent have normal to above average intelligence (Wing, 1996; Wing and Attwood, 1987). This special issue analyzes conversational discourse involving children aged 8–12 years old who fall into this latter category – diagnosed as either high-functioning with autism (HFA) or Asperger syndrome (AS). Researchers have established that children with autism have relatively intact grammatical ability but display pragmatic impairments in language use (see Tager-Flusberg, 2000, for review). What our research has illuminated is that HFA and AS children appear to have less trouble with certain pragmatic dimensions of language than with others (Ochs et al., this issue; Ochs and Solomon, in press). In many respects, the discourse practices of these children appear undifferentiated from those unaffected by this disorder. For example, they are able to participate relatively competently in adjacency pair conversational sequences (Kremer-Sadlik, 2001, this issue), notice social rule violations (Sterponi, this issue), display politeness and empathy (Sirota, 2002, this issue), and launch narratives in conversation (Solomon, 2001, this issue). Yet in other ways, the discourse of these articulate children has a distinct quality: it is subtly but systematically different from unaffected discourse. Each article in this special issue delineates a range of competencies evidenced by HFA and AS children in specific areas of everyday social interaction. Examining question–answer sequences, politeness, accountability, and narrative, the contributors to this special issue address both the dimensions of social competence where the discourse of children with ASD is indistinguishable from 139

LANGUAGE, AUTISM, AND CHILDHOOD: AN ETHNOGRAPHIC PERSPECTIVE

This article reviews recent ethnographic studies on how children with autism spectrum disorders (ASD) use language in their everyday lives: how they are socialized into sociocultural competence, how they participate in the social world as members of families and communities, how they draw on structural properties of social interaction to participate in everyday talk, and to what extent the European American habitus of child-directed communication supports or hinders their communicative development. Other studies reviewed in this article examine language use in autism in relation to narrative, question–answer sequences, bilingualism, accountability and morality, and politeness. The studies frame autism more ethno-methodologically than clinically and capture how children with ASD actively participate in the co-construction of their life worlds through communication with others. This perspective makes visible aspects of language use and everyday experiences of children with ASD and their families that are usually obscured in other theoretical approaches to autism. Through participant observation and extensive naturalistic data collection involving video and audio recording of everyday interaction, ethnographic studies reviewed in this article shed light on patterns of language use and link these patterns to particular cultural practices, making language of children with autism more intelligible and interpretable.

“You Can Turn off the Light If You'd Like”: Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an Interactional Achievement

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctors office, the tacit expectations about the visit may have to be renegotiated to facilitate the childs, the parents, and the doctors participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

‘If I was a different ethnicity, would she treat me the same?’: Latino parents’ experiences obtaining autism services

Abstract This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: a discursively constructed ‘autism parent’ subject position that mandates ‘fighting’ service systems to ‘win’ autism services for children, originating from White middle-class parents’ socioeconomic resources and social capital; a neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and a media and institutional ‘cultural deficit’ discourse that attributes disparities in autism services for Latino children to their parents’ presumed culturally-based ‘passivity.’ We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.

Latino Families' Experiences With Autism Services: Disparities, Capabilities, and Occupational Justice.

This article examines six cases of publicly funded Applied Behavior Analysis (ABA) therapy for Latino children with autism spectrum disorder (ASD) to contribute to thinking about occupational justice. In this ethnographic study of six Latino families of children with ASD in Los Angeles County, all families were offered ABA for their children, but five families experienced occupational challenges leading them to insist on modifications of ABA or to opt out of the service. We consider in each case (a) how the families’ experiences can be understood occupationally, (b) how ABA affected the functionings and capabilities of the children and their families, and (c) how the parents’ accounts relate to occupational justice. Applying the capabilities approach can help operationalize the concept of occupational justice as a tool to evaluate social policy across cases.

Autism across Cultures

Unstrange Minds, by the cultural anthropologist Roy Richard Grinker, is to my knowledge the first cross-cultural account to date of how autism is perceived and interpreted around the world. By interviewing parents (mostly mothers) of children with autism, as well as doctors and child advocates in South Africa, India, South Korea, and the United States, Grinker places autism at the intersection of culture and illness and examines how culture affects the ways in which it is defined. He aims to find new answers to contested questions, especially whether autism is an epidemic. He puts forth a convincing, richly supported argument that frames longstanding questions about autism in new ways. Grinker’s teenage daughter, Isabel, who was diagnosed with autism in 1994 when she was two and a half, is very much a presence in Unstrange Minds. Using Isabel’s compelling and theoretically relevant story as his narrative landscape, Grinker examines families’ experiences with autism across cultures, past and present theories of autism, issues of epidemiology, educational policy, legislation, and other concerns. Throughout the book, there are three interwoven subplots: the story of Isabel’s diagnosis and her family’s experience of struggling with, understanding, and accepting it; the story of autism itself, its evolution as a clinical category, and the unfolding of complex sociocultural processes culminating in the perception of autism as an epidemic; and the stories of families and practitioners living in places as diverse as India, South Africa, and South Korea whom Grinker visited and interviewed. These subplots form an array of local theories and interpretations that support Grinker’s argument: as a cluster of symptoms such as language delay and repetitive, stereotypical behaviors, autism looks very similar but is viewed very differently across time and cultures. The theme that permeates all three subplots of Unstrange Minds is whether autism is now as visible in the rest of the world as it is in North America and Europe and whether a cross-cultural examination of autism would lead to a better understanding of it in the United States. By the book’s end, even a reader not swayed on the epidemic issue will have a new cross-culturally informed understanding of autism. Unstrange Minds is divided into two parts, each with seven chapters. Part 1 is the chronicle of autism through time; part 2 is the cross-cultural account. Chapter 1 begins with a highly personal scene: as he watches Isabel fall asleep, Grinker thinks about how different she is when she is awake. Isabel’s story is anchored to this place of wonder and respect for her progress and the kind of person she has become. The story is reminiscent of those told by parents in India, South Africa, Korea, Trinidad, Croatia, Peru, Kenya, and Namibia. Yet Isabel’s story is unique in important ways. She attended a museum-based preschool at the Smithsonian, where her visual skills blossomed and she started to communicate more. Now a teenager, she is a good older sister, a cellist, an artist, and a caring owner of two French bulldogs. In this opening chapter, Grinker not only gives away the positive ending of Isabel’s story but also explains how Isabel’s autism entered so powerfully into his work. The subject of chapter 2 can be found in many texts on autism: Leo Kanner’s original articulation of autism as a diagnostic category. What makes Grinker’s chapter different, however, is the thoroughly researched, vivid account of Kanner’s family history and his childhood in Austria as “a lonely boy raised by bizarre unexpressive people” (p. 38). Grinker suggests that Kanner’s father may have had Asperger’s syndrome, a high-functioning form of autism, which may have prepared Kanner for later identifying autism as a clinical entity. This chapter ends with another familiar yet newly framed part of the autism story: the simultaneous identification of autism by Leo Kanner in the United States and by Hans Asperger in Austria and the importance of Asperger’s discovery for the notion of the autism spectrum. Chapters 3 and 4 address similar concerns: the stigma, shame, and secrets that may occur when raising a child with a disability. Grinker’s writing about Kanner’s idea of the “refrigerator mother” and about later developments in the psychogenic theory of autism is historically contextualized and filled with new information. Chapter 4 is dedicated to the sociohistorical context in which mothers were blamed for their children’s autism from the 1930s through the 1950s. Grinker writes that mother blame is very much alive in some parts of the world, especially France and Korea. The last three chapters of part 1 are unified by the theme of the autism epidemic. Chapters 5 and 6 examine the rise in autism diagnosis as part of the history of American psychiatry. This rise, Grinker argues, is a product of the standardization of psychiatric diagnoses and of the development of psychopharmacological treatments for psychiatric conditions. In chapter 7, he identifies the multiple forces that converged to create the controversy of the autism epidemic—scientists, the media and the Internet, politicians, philanthropists, advocacy groups, the general public, educators, and clinicians. He reminds us that the politics of knowledge production is and