Culture, Medicine, and Psychiatry

, Volume 39, Issue 2, pp 254–276 | Cite as

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

  • Jennifer C. SarrettEmail author
Original Paper


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.


Autism Spectrum Disorders (ASD) Cross-cultural India Homes Parental attitudes 



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.


  1. Action for Autism. 2014, July 12. Autism Organizations Worldwide. Retrieved from
  2. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (Revised 4th ed.). Arlington, VA: American Psychiatric Publishing.Google Scholar
  3. Benson, Paul, Karlof, Kristie L. & Siperstein, Gary N. (2008). Maternal involvement in the education of young children with autism spectrum disorders. Autism, 12(1), 47-63. doi: 10.1177/1362361307085269.CrossRefGoogle Scholar
  4. Block, P. (2007). Institutional Utopias, Eugenics, and Intellectual Disability in Brazil. History and Anthropology, 18(2), 177–196. doi: 10.1080/02757200701702851 CrossRefGoogle Scholar
  5. Brezis, R.S., Weisner T.S., Daley T.C., Singhal, N., Barua, M., & Chollera S.P. (2015). Parenting a Child with Autism in India: Narratives before and after a Parent-Child Intervention Program. Culture, Medicine, and Psychiatry. doi: 10.1007/s11013-015-9434-y.Google Scholar
  6. Buescher, A.V.S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. doi: 10.1001/jamapediatrics.2014.210.CrossRefGoogle Scholar
  7. Carbone, Paul S., Behl, Diane D., Azor, Virginia, & Murphy, Nancy A. (2009). The medical home for children with autism spectrum disorders: Parent and Pediatrician Perspectives. Journal of Autism and Developmental Disabilities, 40, 317-324. doi: 10.1007/s10803-009-0874-5.CrossRefGoogle Scholar
  8. Chawarska, K., Klin, A., Paul, R., Macari, S., & Volkmar, F. (2009). A prospective study of toddlers with ASD: short-term diagnostic and cognitive outcomes. Journal of Child Psychology and Psychiatry, 50(10): 1235–1245. doi: 10.1111/j.1469-7610.2009.02101.x CrossRefGoogle Scholar
  9. Daley, T. C. (2002). The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry, 39(4), 531–550. doi: 10.1177/136346150203900409.CrossRefGoogle Scholar
  10. Daley, TC 2004 From Symptom Recognition to Diagnosis: Children with Autism in Urban India. Social Science & Medicine (1982) 58(7):1323–1335. doi: 10.1016/S0277-9536(03)00330-7.
  11. Daley, TC, T Weisner, and N Singhal 2014 Adults with Autism in India: a Mixed-Method Approach to Make Meaning of Daily Routines. Social Science & Medicine (1982) 116:142–149. doi: 10.1016/j.socscimed.2014.06.052
  12. Desai, M. U., Divan, G., Wertz, F. J., & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3-4), 613-637.CrossRefGoogle Scholar
  13. Dhar, Rajib Lochan. (2009). Living with a developmentally disabled child: Attitude of family members in India. The Social Science Journal, 46(4), 738-755.CrossRefGoogle Scholar
  14. Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200. doi: 10.1002/aur.1225.CrossRefGoogle Scholar
  15. Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. (2010). Perceptions about intellectual disability: a qualitative study from Vellore, South India. Journal of Intellectual Disability Research, 54(8), 736–748. doi: 10.1111/j.1365-2788.2010.01301.x.CrossRefGoogle Scholar
  16. Escobar, Arturo. (2001). Culture sits in places: Reflections on globalism and subaltern strategies of localization. Political Geography, 20, 139-174.CrossRefGoogle Scholar
  17. Foucault, Michel 1973 The Birth of the Clinic: An Archaeology of Medical Perception. (Alan Sheridan, Trans.). New York: Random House, Inc. (Original work published 1963).Google Scholar
  18. Franke, Richard W. & Chasin, Barbara H. (1991). Kerala: Radical reform as development in an Indian state. San Francisco: Institute for Food and Development Policy as Food First Development Report.Google Scholar
  19. Ginsburg, F., & Rapp, R. 2013 Disability Worlds. Annual Review of Anthropology, 42(1), 53–68. doi: 10.1146/annurev-anthro-092412-155502 CrossRefGoogle Scholar
  20. Good, Byron (1990). Medicine, rationality, and experience. Cambridge: Cambridge University Press.Google Scholar
  21. Grindle, Corinna F., Kovshoff, Hanna, Hastings, Richard P., & Remington, Bob. (2009). Parents’ experiences of home-based applied behavioral analysis programs for young children with autism. Journal of Autism and Developmental Disorders, 39, 42-56. doi: 10.1007/s10803-008-0597-z.CrossRefGoogle Scholar
  22. Grinker, RR, N Chambers, N Njongwe, AE Lagman, W Guthrie, S Stronach, … AM Wetherby 2012 “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa. Autism Research 5(3):201–210. doi: 10.1002/aur.1229
  23. Grinker, R. R., & Cho, K. (2013). Border Children: Interpreting Autism Spectrum Disorder in South Korea. Ethos, 41(1), 46–74.CrossRefGoogle Scholar
  24. Hahn, R. (1995). Sickness and healing: An anthropological perspective. New Haven: Yale University Press.Google Scholar
  25. Haldane, H, and D Crawford 2010 What Lula Lacks: Grappling with the Discourse of Autism at Home and in the Field (Respond to this article at Anthropol. Today 26(3): 24–26. doi: 10.1111/j.1467-8322.2010.00738.x
  26. Hayes, Stephanie A. & Watson, Shelley L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642. doi: 10.1007/s10803-012-1604-y.CrossRefGoogle Scholar
  27. Hogan, Dennis, (2012). Family consequences of children’s disabilities. New York: Russell Sage Foundation.Google Scholar
  28. Imrie, Rob. (2010). Disability, embodiment and the meaning of home. In Vera Chouinard, Edward Hall and Robert Wilton (Eds.) Towards enabling geographies: ‘Disabled’ bodies and minds in society and space (23-44). Surrey: Ashgate.Google Scholar
  29. Jaarsma, P., & Welin, S. (2011). Autism as natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20, 20-30.CrossRefGoogle Scholar
  30. Kakar, Sudhir. (1981). The inner world: A psycho-analytic study of Hindu childhood and society. Oxford: Oxford University Press.Google Scholar
  31. Kapp, S., Gillespie-Lynch, K., Sherman, L., & Hutman, T. (2013). Deficit, difference of both? Autism and neurodiversity. Developmental Psychology, 49, 59-71.CrossRefGoogle Scholar
  32. Kleinman, Arthur. (1977). Depression, somatization, and the ‘new cross-cultural psychiatry’. Social Science & Medicine, 11(1): 3-9.CrossRefGoogle Scholar
  33. Kleinman, Arthur. (1988). Rethinking psychiatry: From cultural category to personal experience. New York: The Free Press.Google Scholar
  34. Kirmayer, Laurence. (1992). The body’s insistence on meaning: Metaphor as presentation and representation in illness experience. Medical Anthropology Quarterly, 6(4): 323-346.CrossRefGoogle Scholar
  35. Learn the Signs, Act early. 2014, May 20. Centers for Disease Control and Prevention. Retreived July 17, 2014, from
  36. Lord, C., Risi, S., DiLavore, P. S., Thurm, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Arch Gen Psychiatry, 63(6): 694-701.CrossRefGoogle Scholar
  37. Luhrmann, Tanya. (2000). Of two minds: The growing disorder of American psychiatry. New York: Vintage Books.Google Scholar
  38. Lutz, Heidi R., Patterson, Barbara J., & Klein, Jean. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27, 206-213.CrossRefGoogle Scholar
  39. Maloni, P.K., Despres, E.R., Habbous, J., Primmer, A.R., Slatten, J.B., Gibson, B.E., & Landry, M.D. (2010). Perceptions of disability among mothers of children with disability in Bangladesh: Implications for rehabilitation service delivery. Disability and Rehabilitation: An International, Multidisciplinary Journal, 32(10), 845-854.CrossRefGoogle Scholar
  40. Nichter, Mark. (1981). Idioms of distress: Alternatives in the expression of psychosocial distress: A case study from South India. Culture, Medicine and Psychiatry, 5(4): 379-408.CrossRefGoogle Scholar
  41. Ochs, E., & Solomon, O. (2010). Autistic Sociality. Ethos, 38(1), 69–92. doi: 10.1111/j.1548-1352.2009.01082.x CrossRefGoogle Scholar
  42. Offit, Paul. (2008). Autism’s false prophets: bad science, risky medicine, and the search of a cure. New York: Columbia University Press.Google Scholar
  43. Padawer, R 2014, July 31. The Kids Who Beat Autism. The New York Times. Retrieved from
  44. Payer, Lynn. (1988). Medicine & culture: Varieties of treatment in the United States, England, West Germany, and France. New York: Henry Holt and Company.Google Scholar
  45. Power, Andrew. (2010). The geographies of interdependence in the lives of people with intellectual disabilities. In Vera Chouinard, Edward Hall and Robert Wilton (Eds.) Towards enabling geographies: ‘Disabled’ bodies and minds in society and space (107-122). Surrey: Ashgate.Google Scholar
  46. Pozo, P, E Sarriá, and A Brioso 2013 Family quality of life and psychology well-being in parents of children with autism spectrum disorders: A double ABCX model. J Intellect Disabil Res. Apr 19. doi:  10.1111/jir.12042
  47. Rapp, R., & Ginsburg, F. (2011). Reverberations: disability and the new kinship imaginary. Anthropological Quarterly, 84(2), 379–410.CrossRefGoogle Scholar
  48. Reiger, A, and JP McGail 2013 Coping humor and family functioning in parents of children with disabilities. Rehabil Psychol. Feb;58(1):89-97. doi:  10.1037/a0031556
  49. Sarrett, JC in press. “Maybe at Birth there was an Injury”: Drivers and Implications of Caretaker Explanatory Models of Autistic Characteristics in Kerala, India. Culture, Medicine, and Psychiatry.Google Scholar
  50. Sartorius, N., Jablensky, A., Korten, A., Ernberg, G., Anker, M., Cooper, J. E., & Day, R. (1986). Early manifestations and first-contact incidence of schizophrenia in different cultures. A preliminary report on the initial evaluation phase of the WHO Collaborative Study on determinants of outcome of severe mental disorders. Psychological Medicine, 16(4), 909–928.CrossRefGoogle Scholar
  51. Shaked, M., & Bilu, Y. (2006). Grappling with affliction: autism in the Jewish ultraorthodox community in Israel. Culture, Medicine and Psychiatry, 30(1), 1–27. doi: 10.1007/s11013-006-9006-2 CrossRefGoogle Scholar
  52. Sirota, K. G. (2010). Narratives of Distinction: Personal Life Narrative as a Technology of the Self in the Everyday Lives and Relational Worlds of Children with Autism. Ethos, 38(1), 93–115. doi: 10.1111/j.1548-1352.2009.01083.x CrossRefGoogle Scholar
  53. Solomon, O., & Bagatell, N. (2010). Introduction Autism: Rethinking the Possibilities. Ethos, 38(1), 1–7.CrossRefGoogle Scholar
  54. Tuan, Yi-Fu. (1979). Space and place: Humanistic perspective. In S. Gale and G. Olsson (Eds.), Philosophy in Geography (387-427). Dordrecht: Reidel.CrossRefGoogle Scholar
  55. Vaidya, Shubhangi 2009 A Sociological Study of Children with Autism in Delhi: Issues and Challenges. Paper presented at Asian Pacific Autism Conference, Sydney, Australia.Google Scholar
  56. Weiss, Jonathan A., Cappadocia, Catherine, Macmillan, Jennifer Anne, Viecili, Michelle, & Lunsky, Yona. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261-274.CrossRefGoogle Scholar
  57. Zabolotsky, B, CP Bradshaw, and EA Stuart 2012 The Association between Mental Health, Stress, and Coping Supports in Mothers of Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. Oct 26. [Epub ahead of print].Google Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.Emory UniversityAtlantaUSA

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