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Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA

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Abstract

The home is a critical place to learn about cultural values of childhood disability, including autism and intellectual disabilities. The current article describes how the introduction of autism into a home and the availability of intervention options change the structure and meaning of a home and reflect parental acceptance of a child’s autistic traits. Using ethnographic data from Kerala, India and Atlanta, GA USA, a description of two types of homes are developed: the custodial home, which is primarily focused on caring for basic needs, and the therapeutic home, which is focused on changing a child’s autistic traits. The type of home environment is respondent to cultural practices of child rearing in the home and influences daily activities, management, and care in the home. Further, these homes differ in parental acceptance of their autistic children’s disabilities, which is critical to understand when engaging in international work related to autism and intellectual disability. It is proposed that parental acceptance can be fostered through the use of neurodiverse notions that encourage autism acceptance.

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Notes

  1. Category fallacy is a concept identified by Arthur Kleinman largely in response to the WHO study on schizophrenia. It is used to describe the phenomena of using a categorical term native to a community, such as autism or schizophrenia in the West, in a different cultural location. When done, the application of the term “will find what is universal and it will systematically miss what does not fit in tight parameters” (Kleinman 1977, p. 4). Thus, some people will be identified correctly, some misidentified, and others entirely missed.

  2. Many households have velakkaran (servants) who help prepare meals, do laundry, and clean houses. This is more common in urban areas and in middle- and upper-class households. Occasionally, these servants also help care for the children but mostly they are responsible for the more physically demanding household tasks.

  3. Some Keralite children did not attend school, however are more likely to attend school than disabled children in the rest of India.

  4. This number may be an inaccurate reflection of the larger Keralite population since informants were recruited from the therapeutic clinics in Trivandrum.

  5. For example, see the CDC’s (Learn the Signs, Act Early 2014) campaign, which emphasizes the importance of parents’ ability to recognize children’s divergence from typical developmental paths. See the campaign details at: http://www.cdc.gov/ncbddd/actearly/index.html.

  6. Occupational therapy focuses on fine motor skills, such as holding a pencil or holding and picking up small items, as well as sensory integration activities that help streamline a child’s sensory processing abilities through activities such as brushing the skin and swinging.

  7. Physical therapy focuses on gross motor skills, such as jumping, running, and balancing.

  8. A recent study estimated the lifetime cost of care for an autistic child with intellectual impairments at $2.4 million and $1.4 million for children without intellectual impairment (Buescher et al. 2014).

  9. For recent examples, see: Pozo et al. (2013); Reiger and McGail (2013); Zabolotsky et al. (2012).

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Acknowledgments

We thank the Organization for Autism Research and Emory University for supporting this research as well as Ariel Cascio for organizing this special issue. We also thank the families, professionals, and children who participated in this project.

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  1. Emory University, Atlanta, GA, USA

    Jennifer C. Sarrett

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Correspondence to Jennifer C. Sarrett.

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Sarrett, J.C. Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA. Cult Med Psychiatry 39, 254–276 (2015). https://doi.org/10.1007/s11013-015-9441-z

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