Functioning and Neurodevelopmental Disorders

Abstract

Neurodevelopmental disorders (NDD) refer to conditions that can be present during a child’s early developmental period, and are typically characterized by challenges in a child’s personal, social, academic, or occupational functioning. Autism spectrum disorder (ASD) is an example of NDD, impacting 1 in 66 children in Canada. While interventions vary across this heterogeneous group of impairments, everyday functioning is an important outcome to families. However, this concept of functioning needs further examination with respect to whether and how it is incorporated within the instruments and concepts used in family-centred services (FCS), and how this is understood by parents. This thesis is composed of two studies: a narrative review identifying function-focused measures published in the literature for children with NDD; and a qualitative study examining how parents of children with ASD perceive their child’s abilities in relation to family-centred services. Fourteen clinical measures were described in the review based on how they utilized the International Classification of Functioning, Disability, and Health (ICF) to describe child functioning. In the qualitative study, five themes (Parenting Approaches, Accepting My Child, Managing Child’s Challenges, Doing the Right Thing for My Child, and “The Disability Tag”) were identified as influential factors that can affect how parents perceive their child’s abilities and functioning. As the cultural shift within interventions for children with NDD continue to move beyond the historically prominent deficit-focused lens, and towards the integration of neurodiverse abilities, this study enables us to understand better how concepts of function-focused care are operationalized in family-centred services and intervention systems.