Child functional characteristics explain child and family outcomes better than diagnosis: Population-based study of children with autism or other neurodevelopmental disorders/disabilities

Health Rep. 2016 Jun 15;27(6):9-18.

Abstract

Background: Allocation of resources for services and supports for children with neurodevelopmental disorders/disabilities (NDD/D) is often based on the presence of specific health conditions. This study investigated the relative roles of a child's diagnosed health condition and neurodevelopmental and related functional characteristics in explaining child and family health and well-being.

Data and methods: The data on children with NDD/D (ages 5 to 14; weighted n = 120,700) are from the 2006 Participation and Activity Limitation Survey (PALS), a population-based Canadian survey of parents of children with functional limitations/disabilities. Direct and indirect effects of child diagnosis status-autism spectrum disorder (ASD)/not ASD-and functional characteristics (particularly, ASD-related impairments in speech, cognition, and emotion and behaviour) on child participation and family health and well-being were investigated in a series of structural equation models, while controlling for covariates.

Results: All models adequately fitted the data. Child ASD diagnosis was significantly associated with child participation and family health and well-being. When ASD-related child functional characteristics were added to the model, all direct effects from child diagnosis on child and family outcomes disappeared; the effect of child diagnosis on child and family outcomes was fully mediated via ASD-related child functional characteristics.

Interpretation: Children's neurodevelopmental functional characteristics are integral to understanding the child and family health-related impact of neurodevelopmental disorders such as ASD. These findings have implications for the relative weighting given to functional versus diagnosis-specific factors in considering needs for services and supports.

Keywords: Child development disorders; child health services; disabled children; family health; functional characteristics; health services needs and demand; resource allocation.

MeSH terms

  • Adolescent
  • Autism Spectrum Disorder / epidemiology
  • Canada / epidemiology
  • Child
  • Child, Preschool
  • Disabled Children / statistics & numerical data*
  • Family Health*
  • Female
  • Humans
  • Male
  • Neurodevelopmental Disorders / epidemiology*
  • Quality of Life*
  • Surveys and Questionnaires