Conceptualizing Early Intervention Outcomes for Young Children with ASDs and Their Families

Background:  Scientific evidence demonstrates autism spectrum disorders (ASDs) can be diagnosed in children as young as 18 months of age and that evidence based early intervention services can have a significant impact on children's development.  Given the import and resources allocated to early intervention services in the United States and elsewhere, systematic evaluation of program impact is needed to inform stakeholders and guide quality improvement efforts.

Objectives:  A multi-year study is being conducted to evaluate the impact of early intervention services on children with ASD and their families.  In Phase I, Concept Mapping (Kane and Trochim, 2007) was used to answer the question, "What are the outcomes that stakeholders (national experts, families, service providers, government administrators, advocates) expect children with ASD and their families to achieve as a result of their participation in early intervention services?"

Methods:  Concept Mapping is a mixed methods planning and evaluation approach that integrates familiar qualitative group processes (brainstorming, categorizing ideas, and assigning value ratings) with multivariate statistical analyses to help groups describe their ideas on any topic of interest, and represent these ideas visually through a series of related maps.  To facilitate the collection of meaningful input, the research team developed two focus prompts: "As a result of early intervention services (a) families of children with autism spectrum disorders will..." and (b) children with autism spectrum disorders will..."

Results:  A diverse group of stakeholders (parents of children with ASDs, n=84; service providers, n=40; local administrators, n=40; state officials, n=57; and, national experts, n=70) were invited to participate in concept mapping activities. Stakeholders generated 370 ideas related to outcomes for children with ASD and 354 ideas related to outcomes for families.  A review of these statements for relevance, redundancy, and clarity of meaning yielded a final statement set of 105 distinct outcome ideas (54 child and 51 family outcomes).  From the sort data, concept maps were created to show the relationships among outcome statements.  Further analysis suggested that parents of toddlers with ASD consider child and family outcomes in fewer, broader categories, whereas professionals involved in ASD services make a greater number of conceptual distinctions among the same set of outcomes.  Professionals organized outcomes into eleven idea clusters (including adaptation/school readiness, cognitive/behavioral skill building, social awareness/engagement for child outcomes clusters, and connections/supports for family wellness, family empowerment, family education and support, supporting social development for family outcomes clusters) compared with seven idea clusters for parents (including expressivity/interaction, behavioral/cognitive development, socialization/engagement for child outcomes clusters, and anticipating child's needs/behavioral challenges, skills/knowledge to support child development, and advocacy/collaboration with professionals for family outcomes clusters).

Conclusions:  Concept Mapping was successfully used with stakeholders to yield a rich set of early intervention outcomes specific to children with ASDs and their families that are differentiated from general outcomes currently applied to EI program evaluation.  This work forms the basis for further research to develop and validate measures to evaluate the impact of early intervention services on young children with ASDs and their families.