Reaction to ASD Diagnosis: Parental Depression, Family Support, and Service Access

Background: Given the numerous challenges involved in raising children with autism spectrum disorders (ASD), it is not surprising that parents of children with ASD report higher levels of parenting stress and psychiatric difficulties than parents of children with other developmental disabilities and parents of typically developing children.   While parenting stress has been one of the most frequently researched aspects of families of children with ASD, we have limited understanding of the clinical, child, and family characteristics associated with this stress in families of young, recently diagnosed children.  Clarification of the factors impacting parenting stress, as well as identifying families at-risk for elevated distress at the time of ASD diagnosis, may better assist researchers and clinicians in targeting prevention and intervention efforts to enhance outcomes for children and families.  

Objectives: In this study we explored relations between depressive symptoms in the week following diagnosis and current depressive symptoms, family support, and ability to access appropriate supports following the diagnosis of ASD.

Methods: All families coming through a university affiliated ASD clinic and receiving a diagnosis of ASD were asked to complete a survey regarding their reaction to diagnosis, family functioning, and parental well-being.  A modified version of the CESD was created with parents providing a retrospective report of depressive symptoms in the week following diagnosis.  Parents also completed the CESD regarding their current depressive symptoms, and likert-rating scales of perceptions of family support and accessing appropriate services.

Results: Seventy-four parents completed the study measures.  Over 75% reported CESD scores above clinical threshold in the week following diagnosis.  Of these parents, 39% reported CESD scores at clinical levels long after the diagnostic event.  All parents who had clinically elevated CESD scores at this later time reported elevated scores during the week following diagnosis.  Overall, 30% of the sample had elevated CESD scores both during the week following diagnosis and at the time of data collection.  Clinically elevated CESD scores in the week following diagnosis were significantly related to decreased family support, t (72) = 2.15,  p <. 05, but not to perceived service access.

Conclusions: The diagnostic assessment experience itself represents a pointed stressor for families of children with ASD.  Many parents report clinically significant levels of depressive symptoms in the immediate aftermath of a diagnosis.  Levels of depression are associated with perceived family support.  These results point to the importance of pointed clinical attention to parental functioning following an ASD diagnosis.