Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program

Abstract

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.’

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Notes

  1. 1.

    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.).

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Acknowledgments

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.

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Correspondence to Rachel S. Brezis.

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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

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Keywords

  • Autism
  • India
  • Parents
  • Intervention
  • Five Minute Speech Sample
  • Socioeconomic status (SES)