Examining Predictors of Worries By Family Caregivers of Transition-Age Youth with Autism Spectrum Disorders

Background and Purpose: Increasing numbers of children and adults are diagnosed with Autism Spectrum Disorder (ASD) in the US across demographics of race, ethnicity, and economic background. While ASD youth do not outgrow the need for services and support, they may lose access to important services as they age out of the educational system, leaving aging caregivers to navigate their youth’s transition to adulthood. Existing literature addresses this transition for ASD youth, as well as caregiver (CG) burden; however, there is little research on CG burden during this transitional period. The objective of this study is to examine CG and youth characteristics as predictors of a specific type of burden–CG worry.

Methods: Data are drawn from a study of 174 family caregivers of transition-age youth with ASD (age 16-30 years), living in a midwestern metropolitan area. Using a CG worries scale, caregivers rated eight worries (e.g., worry about youth’s safety, worry about youth’s future, etc.) experienced in the past six months. An OLS regression model of CG worry used predictors selected based on the literature and caregivers’ responses to an open-ended question about their greatest worry regarding the youth’s care. Predictors included CG health status, CG-reported financial burden, involvement in youth’s daily care, youth age and social involvement, barriers to accessing services, engagement in transition planning, and youth adaptive and problematic behavior.

Results: Caregivers were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Youth received an average of 6 (out of 15) services in the past six months but had an average of three unmet service needs. Most youth and families had engaged in transition planning (72%). Caregivers reported moderate levels of worry (M = 20.13, SD = 5.90) on the 0-32 CG worries scale. CG age, CG physical health status, CG daily involvement, CG financial burden, ASD youth social involvement, barriers to accessing services, and problematic behaviors were related to worry at a bivariate level. The final OLS model explained roughly 29% of the variability in CG worry. Only barriers to service access (b = 2.86, p < .001) and youth problem behavior (b =0.15, p < .001) maintained a significant, independent relationship with CG worry. Most CG characteristics (age, physical health status, daily involvement, and financial burden), ASD youth social involvement, age, and engagement in transition planning were not related to CG worries.

Conclusions and Implications: Study findings provided evidence of the unique contributions of access to services and problem behaviors of transition-age youth to CG worries. Engagement in transition planning was unrelated to CG worries, suggesting that other services (and barriers to their receipt) are more important contributors to CG unease. These findings further support the need for improved access to services during this transitional stage and raise awareness of the need for potential services and interventions to help families manage troublesome behaviors among ASD transition-age youth.