Exploring the Lived Experience of Families in the Social ABCs Parent-Mediated Intervention for Toddlers with Autism Spectrum Disorder

Background:

Given an increasing ability to diagnose ASD in toddlers, there is an urgent need for cost-effective, sustainable, and effective interventions for this age group. One approach that is gaining traction is the inclusion of primary caregivers as intervention mediators, thus allowing for increased treatment intensity (‘dosage’) in a naturalistic context. The Social ABCs is a parent-mediated intervention that employs the evidence-based fundamentals of Applied Behaviour Analysis (ABA) through Pivotal Response Treatment (PRT), with adaptations made for the toddler age group. The Social ABCs takes the form of live parent coaching with the goal of improving positive emotion sharing and functional verbal communication, and is currently being evaluated through an RCT design at two Canadian sites (Toronto and Halifax; Bryson & Brian in prep.). There is relatively little systematic research investigating the impact on the family of parent-mediated interventions for young children with Autism Spectrum Disorder (ASD).        

Objectives:  

The primary objective was to explore the lived experience of families involved in the Social ABCs parent-mediated intervention for toddlers with ASD. 

Methods:  

Guided by phenomenological inquiry, semi-structured face-to-face interviews were conducted using open-ended questions to address topics relevant to family outcomes of early intervention for children with disabilities. All of the families who had completed the Social ABCs parent-mediated intervention phase in Toronto at the time of recruitment were invited to participate in this follow-up study (n=11). Seven parents (6 mothers, 1 father) from six families participated in the interviews. Of the children with ASD, three were boys, and all were between the ages of 19-33 months at the time of intervention, and between 2 years, 10 months and 4 years, 8 months at the time of the interview. Thematic analysis was used to interpret and understand parents’ reported experiences. 

Results:  

Five major themes emerged: 1) impact on the child, 2) impact on parents, 3) impact on the family system, 4) feasibility of implementation, and 5) reflections on the Social ABCs experience. Themes of child gains in communication and engagement, of parent skill acquisition and increased hopefulness for their child’s future, and of family-based changes, including reduced stress and improved family relationships, all reveal the complexity of the impact on the family. 

Conclusions:

Findings highlight the variety of ways in which the Social ABCs had an impact on the child, the parent, and the family as a system. Preliminary findings from this study provide a rationale for future research exploring families’ experience in parent-mediated interventions. These findings may contribute to the growing evidence base in support of parent-mediated interventions for toddlers with ASD, and may inform practice, policy and program development related to early intervention for young children with ASD and their families.