Unhappy (and happy) in their own way: a developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism.

Gardiner E, Iarocci G.
Res Dev Disabil. 2012 Nov-Dec;33(6):2177-92. doi: 10.1016/j.ridd.2012.06.014. Epub 2012 Jul 11.

SOURCE:  Department of Psychology, Simon Fraser University, 8888 University Drive, Burnaby, BC, Canada V5A 1S6. emily_gardiner@sfu.ca

Research on families living with developmental disability generally and autism specifically is dominated by a deficit view that elicits an elaborate representation of problems and risks without the benefit of considering families’ potential for adaptation and resilience. A central tenet of developmental psychopathology is that the study of adaptive and maladaptive development is mutually informative. Specifically, one can examine resilience within the context of adversity and the multiple processes and pathways to adaptive and maladaptive developmental outcomes. We believe these concepts can also be extended to the study of families living with developmental disability as they transition through the family lifecycle. This paper provides an overview of the family quality of life (FQOL) construct, including its conceptualization and measurement, and a review of studies on FQOL among families of children with various developmental disabilities. Special attention is given to families of children with autism, as this is a circumstance characterized by unique adversity. We suggest benefits from adopting a developmental psychopathology perspective, and illustrate how relevant concepts can inform our methodologies as we move forward. We will demonstrate how such an integrated, systemic, and temporal approach will help generate more refined questions on FQOL among families caring for a child with developmental disability in order to provide the specific answers needed to directly inform policy and clinical practice.