Indian Mothers' and Fathers' Changing Views of Their Child with Autism before and after a Parent-Child Training Program

Background:

The Five-Minute Speech Sample (FMSS; Magana et al., 1986) has been used extensively across different clinical populations and varied cultural contexts to assess parents’ relationship with their child and predict outcomes (Bhugra & McKenzie, 2003; Hooley & Parker, 2006). To our knowledge, this is the first study in any culture to compare the views expressed by mothers and fathers of children with autism using the FMSS method, and to examine the effects of a parent-training intervention on their views.

Objectives: (1) What are the themes raised by Indian mothers and fathers of children with autism? (2) In what ways do mothers and fathers differ in the themes they raise, (3) before and after a parent-training intervention?

Methods: Forty mothers and fathers were interviewed before and after a 3-month Parent-Child Training Program at Action for Autism (AFA), New Delhi. During the intervention, mothers are taught practical teaching techniques for their child with autism, with a further focus on acceptance and empowerment. Families came from all regions of India, with varying education and SES backgrounds. Children ranged in age from 2.5 to 10, and were mostly low-functioning (ADOS severity range: 6-10).  In the FMSS, parents are asked to describe their child and their relationship with their child for 5 uninterrupted minutes without further interviewer comment; if parents pause or stop, the interviewer asks the parent to continue.  Interviews were transcribed and translated into English, and coded for emergent themes. Inter-rater reliability of Kappa>.8 was obtained on all topics.

Results: Indian parents of children with autism describe their child and their relationship with their child in ways akin to parents of children with autism elsewhere around the globe (Karst & Van Hecke, 2012).  Parents’ focus is on the unique aspects of their child’s behavior, and their attempts to treat and ameliorate symptoms. In describing their child, parents focus primarily on social, cognitive, communication and self-help skills, and less on repetitive behaviors and sensory interests. After the AFA 3-month training program, parents focus less on social skills and challenging behaviors, and are less concerned that their child be ‘normal’; they are more concerned with the child’s future, employ more autism terminology, and are more likely to reflect on their own role as a parent. Mothers are more likely than fathers to speak about their relationship with their child, and reflect on their role as a parent. Fathers are more likely than mothers to mention their child’s future after the parents’ death. (McNemar’s test; all p’s<.05).

Conclusions:

The FMSS method provides parent descriptions and concerns about their children without explicit prompts or questions by interviewers. There were differences between mothers and fathers, and changes in themes following the parent-training intervention.  Further studies using the FMSS in both high- and low-resource communities in other societies, can help identify parents’ shared and unique concerns, and in turn discover associations with parental and children’s outcomes.