Implementing and evaluating early intervention for children with autism: Where are the gaps and what should we do?

Abstract

Despite recent advances, the evidence base supporting early intervention for young children with autism spectrum disorder (ASD) remains relatively sparse. The International Society for Autism Research (INSAR) recently sponsored a Special Interest Group (SIG) on Implementing and Evaluating Community-Based Early Intervention. Across three meetings, in 2015, 2016, and 2017, conveners of this SIG engaged >200 members to identify knowledge gaps and research priorities for moving the field forward. Here, we summarize the perspectives that emerged from group discussion at the SIG meetings as represented by scholars working actively in the field. Despite encouraging progress, critical gaps and research priorities were identified across all the stages of intervention development and testing from conceptualization to community implementation. Key issues include the need for (a) formal theories to guide early intervention development, evaluation, and implementation; and alignment of intervention goals with scientific knowledge and societal changes that have occurred in the decades since interventions were originally developed; (b) increased focus on feasibility of treatment procedures and alignment with stakeholder values during pilot evaluations; (c) use of research designs that allow for comparisons of different interventions and formats, analyses of active ingredients of treatment, and identification of moderators and mediators of outcome; (d) use of community-partnered participatory research to guide adaptation of intervention models to community settings; (e) inclusion of constructs related to implementation processes and outcomes in treatment trials and; (f) an iterative approach to the progression of knowledge from intervention development to implementation. Autism Res 2018, 11: 16-23. Lay Summary: In this article, we summarize the themes discussed at the INSAR Special Interest Group (SIG) on Implementing and Evaluating Community-Based Early Intervention. Priorities for moving the field forward identified in the SIG included the need for (a) formal theories to guide the development and evaluation of interventions, (b) pilot evaluations that investigate feasibility and acceptability of interventions, (c) methodologies that allow us to determine for whom different interventions bring most benefit and why this is so, (d) strategies to include community members and other stakeholders in the process of developing and evaluating interventions, and (e) understanding of factors that make interventions more likely to be adopted and successfully implemented in the real world.

Autism: One or many spectrums?

“…have drawn attention to how the heterogeneity of autism challenges our capacity to understand and evaluate trajectories and outcomes from intervention, noting that it is unlikely that all individuals with autism will benefit from the same types of approaches . Indeed, despite best research efforts, controversy remains about the most effective interventions for children with autism . In their review of early intervention research, Stahmer et al .…”

“…30 Indeed, despite best research efforts, controversy remains about the most effective interventions for children with autism. [34][35][36][37] In their review of early intervention research, Stahmer et al 38 reported that it is not uncommon for up to 50% of children to show substantial gains following intervention, while the remaining 50% show limited to modest gains in skill development. Questions therefore remain regarding what the right intervention looks like for different children at different stages of development.…”

Cognitive, language and behavioral outcomes in children and adolescents with autism spectrum disorders exposed to early comprehensive treatment models: A meta-analysis and meta-regression

“…Thus, ongoing intervention is necessary, especially for adaptive functioning in real life. Even so, almost 30% of US children with ASD did not receive behavioral or medication treatment [52], and multiple gaps were identi ed across all the stages of intervention development and testing from conceptualization to community implementation [53]. These may be crucial issues to ll to improve outcomes for individuals with ASD in the future.…”

Evidence-based support for autistic people across the lifespan: Maximizing potential, minimizing barriers, and optimizing the person-environment fit

“…From an evidence-based practice perspective, this results in mostly weak or insufficient evidence for treatment efficacy across commonly used, (Anagnostou, 2018, Green and Garg, 2018, Vivanti et al, 2018.…”