Factors associated with stress in families of children with autism spectrum disorder

ABSTRACT

Purpose: The purpose of this study was to identify key factors associated with severe stress in families raising a child with autism spectrum disorder (ASD). Methods: Questionnaires were mailed to families with one or more children with a diagnosis of ASD. Data from 543 surveys were analyzed using univariate and multivariate logistic regression. Results: Forty-four percent (n = 241) of the caregivers reported severe family stress related to raising a child with ASD. Severe family stress was associated with (1) reduced ability to socialize; (2) not having accessed individual therapy; (3) negative co-parent relationships; and (4) high out of pockets costs due to the child’s ASD. The specific ASD diagnosis, comorbid conditions, socio-demographic variables, and social support were not associated with severe family stress. Conclusion: The findings of the current study highlight the importance of a systemic approach to family stress, whereby individual, family, and ecological factors are investigated.

KEYWORDS:

• Ability to socialize
• co-parent
• cost
• family systems
• individual therapy
• occupation

Acknowledgments

The authors thank Aoife McNally, Kirsty Oehlers, Mandy Richards, Geoff Cole, Susan Peden, staff at Disabilities Services Commission, Caitlin Axford, Fiona Choi, Helen Weldergergish, Rachel Owens, Rex Parsons, Stephen Lawrie, Gal Rose, Tim Parkin, and the AIM employment AAWA.

Funding

This study was funded by the Department of Social Services (DSS), formerly the Department of Families, Housing, Community Services, and Indigenous Affairs, with in-kind support of the Autism CRC, established and supported under the Australian Government’s Cooperative Research Centers Program. The research was also conducted in collaboration with Disabilities Services Commission Western Australia (DSC). DSS had no active role in the design, implementation, data collection, analysis, or interpretation of the study. DSC collaborated with the authors and assisted in data collection by in-kind contribution of its employee’s time in some aspects of the study. Writing of the report and the decision to submit this manuscript was solely the role and responsibility of the authors. However, approval to submit this study for publication was sought from CRC Living with Autism Spectrum Disorders, DSS, and DSC. All researchers are independent from both DSS and DSC and take full responsibility for the integrity of the data and the accuracy of the analyses.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Additional information

Funding

This study was funded by the Department of Social Services (DSS), formerly the Department of Families, Housing, Community Services, and Indigenous Affairs, with in-kind support of the Autism CRC, established and supported under the Australian Government’s Cooperative Research Centers Program. The research was also conducted in collaboration with Disabilities Services Commission Western Australia (DSC). DSS had no active role in the design, implementation, data collection, analysis, or interpretation of the study. DSC collaborated with the authors and assisted in data collection by in-kind contribution of its employee’s time in some aspects of the study. Writing of the report and the decision to submit this manuscript was solely the role and responsibility of the authors. However, approval to submit this study for publication was sought from CRC Living with Autism Spectrum Disorders, DSS, and DSC. All researchers are independent from both DSS and DSC and take full responsibility for the integrity of the data and the accuracy of the analyses.