Conceptualizing Child and Family Outcomes of Early Intervention Services for Children With ASD and Their Families

State early intervention programs (EIPs) have been encouraged to develop and implement comprehensive outcomes measurement systems. As the number of children with autism spectrum disorders (ASD) and their families receiving services in state EIPs increases, disability-specific outcomes data are needed to better understand issues of access, costs, and benefits. The New York State Early Intervention Program (NYSEIP) used concept mapping with parent and professional stakeholders to define child and family outcomes expected from early intervention services for children with ASD and their families. Stakeholders generated more than 700 statements (synthesized to 105), then individually sorted (17 parents, 39 professionals) these statements into categories. Stakeholders rated each outcome on importance (20 parents, 48 professionals) and likelihood (18 parents, 46 professionals) that EIP services will yield a positive impact. The aggregated sort data were subjected to two separate sets of multivariate statistical analyses, producing an 11-cluster map of professionals' conceptualization and a 7-cluster map of parent/family members' conceptualization of the outcomes. Possible explanations for the parent/professional differences are discussed. The results will be used as part of ongoing efforts to develop a comprehensive evaluation system for state Part C EIPs that is grounded in stakeholders' perspectives on expected outcomes for children and families.