A Long-Term Follow-up of Participants Who Received Parent-Mediated Intervention for ASD in Toddlerhood: Stories from the First Cohort of the Social ABCs Pilot Study –Where Are They Now?

Background: The Social ABCs is a parent-mediated intervention (Brian et al., 2016) based on empirically supported Pivotal Response Treatment (PRT; Koegel & Koegel, 2006). The main targets of the Social ABCs are functional early (vocal/verbal) communication and positive affect sharing between child and caregiver for infants/toddlers who have suspected or diagnosed Autism Spectrum Disorder (ASD).

The Social ABCs was developed as a pilot study ten years ago to explore very early intervention in infants and toddlers showing early signs of ASD or related symptoms. The original participants included young toddlers between 12-30 months of age, across two sites (Halifax, NS and Toronto, ON). This abstract explores the long term developmental outcomes of the child participants from our pilot phase of the Social ABCs-Toronto cohort.

Objectives: Bolstered by evidence of positive (short-term) treatment outcomes, we sought to explore long-term developmental outcomes of early participants in the Social ABCs. We hope this can help us to understand how early intervention may interact with development and symptoms of ASD over time. Longitudinal exploration includes questions such as: “What did social-communication look like in toddlerhood, before intervention, and what does social-communication look like now?”, “Is response to treatment associated with current functioning?”.

Methods: We have re-assessed six of the initial 11 participants from the Toronto site of the Social ABCs pilot within the context of our longitudinal infant sibling study (Zwaigenbaum et al., 2005). Analysis entails a mixed-methods approach. Through chart review, we examined each participant’s performance on standardized measures of development, as well as ASD-related symptoms based on ADOS, ADI-R and parent interviews, from toddlerhood (mean age = 2 years) into middle childhood (mean age = 10 years). We will incorporate parents’ informal anecdotal feedback and supplement this with qualitative interviews with parents at the long-term follow up assessment in order to explore themes relating to the perceived long-term impacts of the Social ABCs on the child and family.

Results: Data from the middle-childhood follow-up assessment revealed: (1) the children in the Social ABCs pilot group made considerable gains in standardized measures of cognitive, language, and social-communication development; (2) most of the participants did not go on to receive an ASD diagnosis; (3) parents in the pilot group spontaneously shared themes of positive feelings about the impact of the Social ABCs intervention on the child’s social communication abilities over time; these reflections will be supplemented by formal interview data.

Conclusions: Significant gains were observed in the six pilot participants at a follow-up assessment in middle-childhood. Parents reported positive feelings about the Social ABCs and describe possible influences on their child’s development and ASD symptoms. In order to further investigate the role of the Social ABCs on development over time, we will conduct formal interviews with this group of parents. Future work includes exploring the long-term development of a larger cohort of participants from our RCT.