In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent–Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents’ narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child’s immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to ‘normality,’ and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents’ experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of ‘parents of children with autism.’
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
Tax calculation will be finalised during checkout.
While this was not a direct focus of the FMSS, we have evidence that parents’ increased in their theoretical and practical understanding of autism from quantitative and qualitative measures directly designed to assess their knowledge and skills (Daley et al., in preparation). These include increased knowledge about the symptoms and causes of autism (e.g., my child may have unusual sensory interests and a need for sameness in the environment), and strategies (e.g., using structure and visual cues, matching one’s language to the child’s level of understanding, using positive facial and body language to encourage one’s child to engage with oneself etc.).
Adams, Gail Fox 2014 Supporting Language Access: Teaching Talk Without Words. (Doctoral dissertation). pp. 113–139. Los Angeles: University of California.
Baker, Jason K., Marsha Mailick Seltzer and Jan S. Greenberg 2011 Longitudinal effects of adaptability on behavior problems and maternal depression in families of adolescents with autism. Journal of Family Psychology 25(4):601.
Benson, Paul R., Dave Daley, Kristie L. Karlof and Dorothy Robison 2011 Assessing expressed emotion in mothers of children with autism: The Autism-Specific Five Minute Speech Sample. Autism 15(1):65–82.
Bhugra, Dinesh and Kwame McKenzie 2003 Expressed emotion across cultures. Advances in Psychiatric Treatment 9(5):342-348.
Brezis, Rachel 2012 Autism as a case for neuroanthropology: Delineating the role of Theory of Mind in religious development. In The Encultured Brain: An Introduction to Neuroanthropology. Daniel Lende and Greg Downey, eds. pp. 291–314. Cambridge, MA: MIT Press.
Cascio, Ariel 2015 Rigid Therapies, Rigid Minds: Italian Professionals’ Perspectives on Autism Interventions. Culture, Medicine and Psychiatry. doi:10.1007/s11013-015-9439-6.
Cheng, Andrew T.A. 2002 Expressed emotion: a cross-culturally valid concept? The British Journal of Psychiatry 181(6):466–467.
Daley, Tamara 2004 From symptom recognition to diagnosis: Children with autism in urban India. Social Science and Medicine 58(7):323–335.
Daley, Tamara C. 2002 The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry 39(4):531–550.
Daley, Tamara, Nidhi Singhal and Merry Barua 2012 Autism Spectrum Disorders in India: A Comprehensive Review of the Literature. Poster presentation at the International Meetings for Autism Research, Toronto, Canada, May 17–19, 2012.
Desai, Sonalde B., Dubey, Amaresh, Joshi, Brij Lal, Sen, Mitali, Sharif, Abusaleh, Vanneman, Reeve 2010 Human Development in India: Challenges for a society in transition. New Delhi: Oxford University Pres.
Desai, Miraj U., Gauri Divan, Frederick J. Wertz and Vikram Patel 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, Gauri, Vivek Vajaratkar, Miraj U. Desai, Luisa Strik‐Lievers and Vikram Patel 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.
Donner, Henrike 2006 Committed mothers and well-adjusted children: privatisation, early-years education and motherhood in Calcutta. Modern Asian Studies 40(2):371.
Edwardraj, Sushila, K Mumtaj, JH Prasad, A Kuruvilla and KS Jacob 2010 Perceptions about intellectual disability: a qualitative study from Vellore, South India. Journal of Intellectual Disability Research 54(8):736–748.
Elsabbagh, Mayada, Gauri Divan, Yun-Joo Koh, Young Shin Kim, Shuaib Kauchali, Carlos Marcín, Cecilia Montiel-Nava, Vikram Patel, Cristiane S. Paula, Chongying Wang, Mohammad Taghi Yasamy, and Eric Fombonne 2012 Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Research 5(3):160–79.
Feinstein, Adam 2010 A history of autism: Conversations with pioneers. Chichester, United Kingdom: Wiley-Blackwell.
Gilbertson, Amanda 2014 ‘Mugging up’ versus ‘exposure’: International schools and social mobility in Hyderabad, India. Ethnography and Education 9(2):210–223.
Grinker, Roy Richard 2007 Unstrange minds: Remapping the world of autism. New York: Basic Books.
Grinker, Roy Richard, Marshalyn Yeargin-Allsopp and Coleen Boyle 2011 Culture and autism spectrum disorder: the impact of culture and recognition. In Autism spectrum disorders. D.G. Amaral, G. Dawson and D.H. Geschwind, eds. New York: Oxford.
Gupta, Ashum and Nidhi Singhal 2005 Psychosocial support for families of children with autism. Asia Pacific Disability Rehabilitation Journal 16(2):62–83.
Jenkins, Janis H and Marvin Karno 1992 The meaning of expressed emotion: theoretical issues raised by cross-cultural research. The American Journal of Psychiatry 149:9–21.
Karst, Jeffrey S and Amy Vaughan Van Hecke 2012 Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review 15(3):247–277.
Kleinman, Arthur 1988 The Illness narratives: Suffering, healing, and the human condition. New York: Basic Books.
Laghezza, Loredana, Claudia Mazzeschi, Daniela Di Riso, Daphne Chessa and Livia Buratta 2010 The Five Minute Speech Sample as a measure of parental Expressed Emotion in the field of disability. Life Span and Disability 8(2):169–186.
Leff, Julian P and Christine Vaughn 1985 Expressed emotion in families: Its significance for mental illness. New York: Guilford Press.
Leff, Julian, Narendra N. Wig, H. Bedi, D.K. Menon, L. Kuipers, A. Korten, G. Ernberg, R. Day, N. Sartorius, A Jablensky (1990) Relatives’ expressed emotion and the course of schizophrenia in Chandigarh A two-year follow-up of a first-contact sample. The British Journal of Psychiatry 156(3):351–356.
Lord, Catherine, Michael Rutter, Pamela DiLavore and Susan Risi 1999 Autism diagnostic observation schedule-WPS. Los Angeles, CA: Western Psychological Services.
Magaña, Ana B., Michael J. Goldstein, Marvin Karno, David J. Miklowitz, Janis Jenkins, Ian R.H. Falloon 1986 A brief method for assessing expressed emotion in relatives of psychiatric patients. Psychiatry Research 17(3):203–212.
Malcolm-Smith, Susan, Michelle Hoogenhout, Natalia Ing, Kevin G.F. Thomas, Petrus de Vries 2013 Autism spectrum disorders—Global challenges and local opportunities. Journal of Child Adolescent Mental Health, 25(1):1–5.
Maloni, Priya K, Elisabeth R Despres, Joanna Habbous, Andrea R Primmer, Jeffrey B Slatten, Barbara E Gibson and Michel D Landry 2010 Perceptions of disability among mothers of children with disability in Bangladesh: Implications for rehabilitation service delivery. Disability and Rehabilitation 32(10):845–854.
Marrow, Jocelyn and Tanya Marie Luhrmann 2012 The zone of social abandonment in cultural geography: On the street in the United States, inside the family in India. Culture, Medicine, and Psychiatry 36(3):493–513.
Nunley, Michael 1998 The involvement of families in Indian psychiatry. Culture, Medicine and Psychiatry 22(3):317–353.
Ochs, Elinor, and Olga Solomon 2010 Autistic sociality. Ethos 38(1):69–92.
Pakenham, Kenneth, Samantha Bursnall, Jessica Chiu, Toni Cannon and Miwa Okochi 2006 The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparison between young caregivers and noncaregivers. Rehabilitation Psychology 51:113–126.
Pituch, Keenan A., Vanessa A. Green, Robert Didden, Russell Lang, Mark F. O’Reilly, Giulio E Lancioni and Jeff Sigafoos 2011 Parent reported treatment priorities for children with autism spectrum disorders. Research in Autism Spectrum Disorders 5(1):135–143.
Rios, Clarice and Costa, Barbara 2015 The Changing Face of Autism in Brazil. Culture, Medicine and Psychiatry (in review).
Rutter, Michael, Anthony Bailey and Cathrine Lord 2003 The social communication questionnaire. Los Angeles, CA: Western Psychological Services.
Sarrett, Jennifer 2015 Custodial homes, therapeutic homes, and parental acceptance: Parental experiences of autism in Kerala, India and Atlanta, GA USA. Culture, Medicine and Psychiatry (in review).
Skinner, Debra and Thomas S. Weisner 2007 Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 13:302–312.
Solomon, Olga and Nancy Bagatell 2010 Introduction: Autism: Rethinking the possibilities. Ethos 38(1):1–7.
Sparrow, Sara S, Domenic V. Cicchetti and D.A. Balla 2005 Vineland adaptive behavior scales: Second edition (Vineland II). Livonia, MN: Pearson Assessments.
Subandi, M.A. 2011 Family expressed emotion in a Javanese cultural context. Culture, Medicine, and Psychiatry 35(3):331–346.
Wasserman, Stephanie, Amy Weisman de Mamani and Peter Mundy 2010 Parents’ criticisms and attributions about their adult children with high functioning autism or schizophrenia. Autism 14(2):127–137.
Wig, Narendra N, DK Menon, H Bedi, A Ghosh, L Kuipers, J Leff, A Korten, R Day, N Sartorius and G Ernberg 1987 Expressed emotion and schizophrenia in north India. I. Cross-cultural transfer of ratings of relatives’ expressed emotion. The British Journal of Psychiatry 151(2):156–160.
The authors wish to thank the families who participated in the study. Assistance to the project was provided by Deepali Taneja, Sachita Suryanarayan, Simi Sunny, Rubina Pradhan, Tanvi Behl and Shaivalini Singh at AFA, and by Gail Fox Adams, Avani Bedagkar, Navjot Sandhu, and Fatima Burney at UCLA. The Center for Culture and Health (Semel Institute, Department of Psychiatry, UCLA) also provided support. The project is part of the Culture, Brain, Development, and Mental Health Program (CBDMH), [http://cbdmh.org] funded by the Foundation for Psychocultural Research, Robert Lemelson, President.
About this article
Cite this article
Brezis, R.S., Weisner, T.S., Daley, T.C. et al. Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program. Cult Med Psychiatry 39, 277–298 (2015). https://doi.org/10.1007/s11013-015-9434-y
- Five Minute Speech Sample
- Socioeconomic status (SES)