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

Culture, Medicine, and Psychiatry - Tập 39 - Trang 254-276 - 2015
Jennifer C. Sarrett1
1Emory University, Atlanta, USA

Tóm tắt

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.

Tài liệu tham khảo

Action for Autism. 2014, July 12. Autism Organizations Worldwide. Retrieved from http://www.autism-india.org/worldorgs.html

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (Revised 4th ed.). Arlington, VA: American Psychiatric Publishing.

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.

Block, P. (2007). Institutional Utopias, Eugenics, and Intellectual Disability in Brazil. History and Anthropology, 18(2), 177–196. doi:10.1080/02757200701702851

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.

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.

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.

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

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.

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.

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

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.

Dhar, Rajib Lochan. (2009). Living with a developmentally disabled child: Attitude of family members in India. The Social Science Journal, 46(4), 738-755.

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.

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.

Escobar, Arturo. (2001). Culture sits in places: Reflections on globalism and subaltern strategies of localization. Political Geography, 20, 139-174.

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).

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.

Ginsburg, F., & Rapp, R. 2013 Disability Worlds. Annual Review of Anthropology, 42(1), 53–68. doi:10.1146/annurev-anthro-092412-155502

Good, Byron (1990). Medicine, rationality, and experience. Cambridge: Cambridge University Press.

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.

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

Grinker, R. R., & Cho, K. (2013). Border Children: Interpreting Autism Spectrum Disorder in South Korea. Ethos, 41(1), 46–74.

Hahn, R. (1995). Sickness and healing: An anthropological perspective. New Haven: Yale University Press.

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 http://www.therai.org.uk/at/debate). Anthropol. Today 26(3): 24–26. doi:10.1111/j.1467-8322.2010.00738.x

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.

Hogan, Dennis, (2012). Family consequences of children’s disabilities. New York: Russell Sage Foundation.

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.

Jaarsma, P., & Welin, S. (2011). Autism as natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20, 20-30.

Kakar, Sudhir. (1981). The inner world: A psycho-analytic study of Hindu childhood and society. Oxford: Oxford University Press.

Kapp, S., Gillespie-Lynch, K., Sherman, L., & Hutman, T. (2013). Deficit, difference of both? Autism and neurodiversity. Developmental Psychology, 49, 59-71.

Kleinman, Arthur. (1977). Depression, somatization, and the ‘new cross-cultural psychiatry’. Social Science & Medicine, 11(1): 3-9.

Kleinman, Arthur. (1988). Rethinking psychiatry: From cultural category to personal experience. New York: The Free Press.

Kirmayer, Laurence. (1992). The body’s insistence on meaning: Metaphor as presentation and representation in illness experience. Medical Anthropology Quarterly, 6(4): 323-346.

Learn the Signs, Act early. 2014, May 20. Centers for Disease Control and Prevention. Retreived July 17, 2014, from http://www.cdc.gov/ncbddd/actearly/index.html.

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.

Luhrmann, Tanya. (2000). Of two minds: The growing disorder of American psychiatry. New York: Vintage Books.

Lutz, Heidi R., Patterson, Barbara J., & Klein, Jean. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27, 206-213.

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.

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.

Ochs, E., & Solomon, O. (2010). Autistic Sociality. Ethos, 38(1), 69–92. doi:10.1111/j.1548-1352.2009.01082.x

Offit, Paul. (2008). Autism’s false prophets: bad science, risky medicine, and the search of a cure. New York: Columbia University Press.

Padawer, R 2014, July 31. The Kids Who Beat Autism. The New York Times. Retrieved from http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html.

Payer, Lynn. (1988). Medicine & culture: Varieties of treatment in the United States, England, West Germany, and France. New York: Henry Holt and Company.

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.

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

Rapp, R., & Ginsburg, F. (2011). Reverberations: disability and the new kinship imaginary. Anthropological Quarterly, 84(2), 379–410.

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

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.

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.

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

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

Solomon, O., & Bagatell, N. (2010). Introduction Autism: Rethinking the Possibilities. Ethos, 38(1), 1–7.

Tuan, Yi-Fu. (1979). Space and place: Humanistic perspective. In S. Gale and G. Olsson (Eds.), Philosophy in Geography (387-427). Dordrecht: Reidel.

Vaidya, Shubhangi 2009 A Sociological Study of Children with Autism in Delhi: Issues and Challenges. Paper presented at Asian Pacific Autism Conference, Sydney, Australia.

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.

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].

Thông tin
Thông tin xuất bản

Culture, Medicine, and Psychiatry

Tập 39

254-276

Thông tin tác giả