The impact of a child's autism diagnosis on caregiver grief experiences and isolation

Abstract

Raising a child with autism presents caregivers with a unique set of experiences. Previous research suggests that caregivers in this population experience grief, isolation, increased stress, and depressive symptoms, however, there is no theoretical model to understand the interrelations between these variables. The current study presents a new theoretical model to test the associations between these constructs to help understand what influences stress and depressive symptoms in caregivers raising a child with ASD. Specifically, the present study hypothesizes that 1) all main variables of interest in the model will be positively related, and that 2) chronic sorrow, social isolation, and existential isolation will serve as mediators in the relationship between uncertainty and both stress and depressive symptoms. A Qualtrics survey was distributed to parents or legal guardians of a child with autism (n = 156; Mage = 38.83; 73.1% female; 82.1% white) through CloudResearch Connect and clinics nationwide. Participants completed six questionnaires assessing uncertainty, chronic sorrow, social isolation, existential isolation, stress, and depressive symptoms. Correlation analyses showed all variables were positively related to each other aside from social isolation which was not related to either chronic sorrow or uncertainty. Mediation analyses showed that chronic sorrow served as a partial mediator in the relationship between uncertainty and stress, and a full mediator in the relationship between uncertainty and depressive symptoms. Social and existential isolation were not found to mediate either the relationship between uncertainty and stress or uncertainty and depressive symptoms. This study had a number of implications including being the first to measure existential isolation, uncertainty, and chronic sorrow in this population. This study provides initial support in understanding the role that chronic sorrow plays in caregiver stress and depressive symptoms, and suggests that, while related to stress and depressive symptoms, social and existential isolation need to be reconceptualized within the model.