Indian Parent-Child Training Program Empowers Parents of Children with ASD: A Culturally Relevant Model for Autism Intervention

Rachel Brezis, Nidhi Singhal, Tamara Daley, Merry Barua, Tom Weisner

Most low-resource countries have neither the legislation to guarantee that children with Autism Spectrum Disorder (ASD) receive services, professional training to identify such children, nor sufficient infrastructure to provide such services. Moreover, intervention programs for young children with ASD have largely developed under conditions that are both culturally inconsistent and economically untenable for these settings. In this absence of appropriate services, the responsibility for managing behavior and facilitating development typically falls on parents. While there is clear need for government level action to address this gap, training parents is an immediate, essential need for the foreseeable future. Consistent with this, the Parent-Child Training Program (PCTP) was initiated at Action for Autism, India in 2000, by Indian parents of children with autism. The program aims to provide practical and theoretical knowledge on autism and behavior management to parents, while instilling in participants a philosophy of acceptance and empowerment. Training takes place in New Delhi over a 3-month period, with the parent and child attending together. To date, the PCTP has trained over 340 participants throughout India.

The present study provides the first systematic evaluation of the program. Three cohorts of parent-child dyads (N=40) participated in the study. Both parents were interviewed at the start of the program, and at the end of the program. The interviews included a combination of standardized measures and a set of measures developed specifically for this evaluation (called RAFIN).

Parents degree of empowerment (defined as their belief they have the knowledge and skills to help themselves and help others) was measured using the Parental Sense of Competence scale (PSOC), the Family Empowerment Scale (FES), the RAFIN-Empowerment Scale (ES), and the RAFIN-Parent Advocacy Activities Scale (PAA). Parents degree of child acceptance was measured using the RAFIN-Acceptance Scale (AS). Parents understanding of autism was measured using the RAFIN-Knowledge and Skills Questionnaire. Parents Stress was measured using the Parent Stress Inventory (PSI). Childrens diagnoses were ascertained at pre-test using the Autism Diagnostic Observation Schedule (ADOS), and evaluated over time using the Social Communication Questionnaire (SCQ) and the Vineland Adaptive Behavior Scales (VABS).

Results of the first cohort indicate that parents degree of empowerment, as measured by the ES, FES, PSOC and PAA increases significantly through the duration of the program (t(15)=4.94, p<.000; t(15)=3.73, p=.002, and t(15)=3.84, p=.002, t(15)=2.66, p.018 respectively). Parents degree of acceptance increases significantly, as measured by the AS (t(15)=1.75, p<.000), as do their skills and knowledge of autism (t(15)=14.86, p<.000); while their stress levels decline (t(15)=5.67, p<.000). Importantly, the childrens degree of autism, as measured by the SCQ, was reduced (t(14)=2.24, p=.042)

These results provide the first objective evidence for the utility of the PCTP program, and its success in training parents of children with autism in low-resource communities. Further research is underway to follow these families after 6- and 12-months, and relate these quantitative measures with qualitative interviews and video observations, to better evaluate the program.