From symptom recognition to diagnosis: children with autism in urban India

Abstract

The period of time between initial recognition of a symptom and initial diagnosis warrants examination because it can serve as a window into broader cultural factors and allow for more immediate treatment. Research on this process among parents of autistic children to date has been useful, but has been limited to families in Western countries, whereas autism occurs all over the world. The current study provides data on the process of initial symptom recognition, help-seeking, and initial diagnosis of a pervasive developmental disorder among 95 families of autistic children in India. The findings suggest that the specific symptoms that parents initially recognize may be associated with the speed with which they receive a diagnosis, and that the saliency of symptoms may be culturally shaped. Environmental, cultural, and socioeconomic factors may also have an impact on whether a parent receives a diagnosis. Implications for professional awareness and increased accuracy of diagnosis are also suggested.

Introduction

For every childhood problem that receives a medical diagnosis, there is a period of time between a parent's first recognition of an unusual behavior and the eventual diagnosis. Researchers have examined this period from multiple perspectives. In some cases (e.g. McMiller & Weisz, 1996; Chung et al., 1999; Howard & Hodes, 2000), researchers describe how this sequence varies within a culture across ethnic groups, while other researchers (e.g. Ho & Chung, 1996) aim to understand how it may vary within a culture across different health concerns. Each step of this process can serve as a window into broader factors. For example, the saliency of different symptoms sheds light on shared beliefs about deviance as well as knowledge about normative development. The type of medical professionals, healers, family members, or others sought out for consultation illuminates underlying aspects of a cultural explanatory model (Kleinman, 1980), as well as highlights how economic factors influence both the nature of the help available and the amount that is possible. The time between symptom recognition and diagnosis is also often focused upon because it constitutes a specific period during which earlier diagnosis may lead to faster intervention.

In the field of autism, a driving force behind research on how symptoms are recognized and diagnosed has been the understanding that earlier treatment can lead to a more positive outcome. While much about the course of autism is still unclear, the importance of early intervention for such children is almost universally acknowledged (National Research Council, 2001; Klinger & Dawson, 1996; Powers, 1992). For example, Powers (1992) notes the advantage of intervention before maladaptive patterns of behavior and communication are firmly ingrained, and that early intervention has significant benefits for parental mental health, such as maximizing family acceptance and adjustment to their child's disability. Early intervention programs also have an impact on child functioning, often leading to full inclusion programs in elementary school (Dawson & Osterling, 1997). Further evidence for the critical importance of early intervention is provided by studies contrasting the effects of later intervention—significant differences in improvement for children who begin a program before the age of 5 as compared to those who begin after the age of 5 (Fenske, Zalenski, Krantz, & McClannahan, 1985). Clearly, the operative philosophy behind intervention for autism is to intervene as quickly as possible.

Yet treatment relies on accurate diagnosis, and this must begin with a family member or caregiver's ability to identify problematic behaviors. Accordingly, studies have focused on the age of the child and specific symptoms of autism recognized by parents. In a study on mothers’ perception of age of onset, mothers identified autism earlier than ADHD, conduct disorder and ADHD comorbid with conduct disorder, with average age of recognition at 15 months (Sullivan, Kelso, & Stewart, 1990). Abstracted record reviews in two studies found the average age of recognition to be 14.9 months (Volkmar, Stier, & Cohen, 1985) and 18.3 months (Siegel, Pliner, Eschler, & Elliott, 1988). Most recently, DeGiacomo and Fombonne (1998) found the average age of symptoms arousing concern was 19.1 months using the Autism Diagnostic Interview (Lord, Rutter, & Le Couteur, 1994), a standard diagnostic tool for autism (1998). These studies suggest that parents first notice differences in their children fairly early, given the complexities of actual diagnosis.

Recognition of a problem is only the first step of the process, however, and diagnosis of autism continues to create considerable confusion in actual practice. Prominent researchers have argued that “there is no other developmental or psychiatric disorder of children (or, perhaps, of persons of any age) for which such well-grounded and internationally accepted diagnostic criteria exist” (Cohen & Volkmar, 1997, p. 947). Regardless of the clarity of diagnostic criteria in standard systems such as the Diagnostic and Statistical Manual (DSM-IV; American Psychiatric Association, 1994) and International Classification of Diseases (ICD-10; World Health Organization, 1992), actual diagnosis requires not only the knowledge that the symptom is associated with the disorder (i.e. a familiarity with diagnostic categories) but also a belief that the symptom is problematic. At the stage of diagnosis, this can present difficulties. If, for example, a professional does not regard delays in language as atypical until a late age, then a child presenting at an earlier age with this feature may not be “picked up” even by a professional with knowledge of Western diagnostic standards. Professionals’ adherence to standard guidelines such as DSM and ICD may also vary as a result of numerous factors, including interpretation of symptoms and the perceived relevance of criteria (Fryers, 1986).

Furthermore, unlike Down's syndrome or a sensory or motor impairment, there are no obvious physical markers of autism. The diagnosis of autism often is as much an evaluation of the absence of certain behaviors as the presence of others (Lord, Storochuck, Rutter, & Pickles, 1993; Richer, 1996), increasing the difficulty of identification. For example, the absence of appropriate interaction with peers, an important feature of the disorder, is often attributed to a personality trait of the child rather than recognized as a deficit. Romanaczyk, Lockshin, and Navalta (1994) note that the uneven skill development characteristic of autism may further hinder diagnosis by making a child's overall functioning appear higher because of a few specific abilities. In some cases, the saliency of a characteristic of autism may not be fully observed until the child is put into a new environment. It is often the case that social difficulties may not be evident until a child has the opportunity to interact with peers, or that a child's fixation with routine may not become clear until he is placed in a structured environment that does not allow for his own patterns.

The research literature has provided a general understanding of the way the recognition of symptoms leads to diagnosis, and the benefits of early diagnosis, but an obvious gap remains in the work of both autism researchers and that of medical anthropologists. To date, autism researchers have almost entirely neglected families of diverse ethnic backgrounds and those in non-Western countries, and medical anthropologists have virtually ignored the condition of autism. This lacuna in the research literature exists even though the pervasive developmental disorders have been identified in at least 80 countries worldwide and autism offers researchers a remarkably rich topic for research (Daley, 2002). To address this gap, the current study focuses on autism in the urban areas of one particular non-Western country: India.

Of all the developing countries in which autism has been described, India has by far the largest literature on the disorder. Over 50 articles and chapters on infantile autism have appeared in Indian publications and by Indian authors since 1962. The quantity of literature available from India is intriguing when one considers that several researchers have claimed that autism in places such as India is either rare or nonexistent (Sanua, 1984; Lotter, 1980) or if present, then not reported. For example, Lotter begins a paper by stating that “the literature on the syndrome of childhood autism contains no descriptions of cases occurring amongst the indigenous populations of developing countries” (Lotter, 1978, p. 231), when in fact, by 1978, there were at least 12 published accounts by Indian authors.

While the literature suggests that medical professionals maintain a variety of beliefs and practices, no single view of autism that emerges from within India. Autism has been called childhood schizophrenia as early as 1959 (Batliwalla, 1959) and as recently as 1987 (DeSousa & DeSousa, 1987). A chapter by an authority on child mental health emphasized the presence and role of psychosocial stressors in the etiology of autism (Kapur, 1995); however, other recent articles have suggested biological explanations (Kar, Khanna, & Kar, 1997). Additional terms used to describe the disorder include infantile autism, early infantile autism, savant syndrome, childhood psychosis, pervasive developmental disorder, and disintegrative psychosis. A complete review of this literature is beyond the scope of the paper, but it is clear that Indian researchers themselves believe autism to be a worthy area of study, and this body of literature provides an excellent historical picture of the evolution of beliefs, diagnosis, and treatment of the disorder within India.

An examination of autism in India may also allow a preliminary focus on certain aspects of the disorder. For example, if it is true, as prominent Indian psychologists have suggested (e.g. Kakar, 1981; Sinha, 1988), that Indians largely emphasize conformity to social norms and value social relatedness, then a disorder that is primarily one of social relatedness may have special significance. The family of a person unable to perform these roles may be more affected by the disorder than a family in a culture with less social emphasis, and parents might recognize social symptoms earlier. In addition, Indians “know” autism: Western psychiatry and psychology were imported during colonialism, and medical practitioners routinely diagnose the condition, thereby placing the disorder of autism on the Indian map, historically, medically, and politically (Daley & Sigman, 2002). In addition to documenting the process of symptom recognition and diagnosis of autism in India for the first time, the second goal of this paper is to suggest that the particular combination of parent factors and professional beliefs does not necessarily result in a linear process of symptom recognition, help-seeking and diagnosis by a medical or mental health professional. Data from interviews with parents of autistic children and the qualitative portion of a survey about the diagnosis of autism among professionals will be used to suggest factors within the Indian context that may have an impact on different stages of the diagnostic process.