Contributors to Family Stress in Transition-Aged Youth with Autism Spectrum Disorder

Background: Adolescents with autism spectrum disorder (ASD) and their families experience significant stress as they approach the transition to adulthood following graduation from high school (Lounds et al., 2007). Recent efforts to improve transition services (e.g., transition planning for individualized education programs [IEPs], family psychoeducation programming) have improved family understanding and support during this time. However, few studies have investigated whether the increases in services relate to reduced child and family stress, and what needs remain for families. Understanding associations between family stress and transition will be critical to ensure successful transition to adulthood for youth with ASD.

Objectives: The aim of this study was to determine contributors to family stress in youth preparing to transition to adulthood.

Methods: Participants included 19 families of verbally-fluent adolescents with ASD who did not have Intellectual Disability (ID) who enrolled in Transitioning Together, a multi-family group psychoeducation intervention for families of individuals with ASD preparing for the transition to adulthood (DaWalt et al., 2018). This program is specifically designed to assist families in navigating the transition process, gaining transition-specific knowledge and resources, and reducing parent stress. Prior to beginning the program, parents completed the Adolescent Transition Survey (ATS, Duncan & Bishop, 2011), which assesses knowledge of the transition process, general and social concerns related to the transition to adulthood, as well as perceived need for supports and available resources. The General Concerns Scale included 26 concerns related to the transition to adulthood (e.g., skills pertaining to independent living, decision making, social success). The Social Concerns Scale was comprised of 23 items related to social skills pertaining to independent living (e.g., interacting well with others, joining activities, responding to challenging situations). Both scales were rated on a scale of 1 (very concerned) to 4 (not concerned), with lower scores indicating higher concerns. Parents also indicated the number of supports their adolescents receive on the ATS. Parents also completed the Stress Index for Parents of Adolescents (SIPA), which assesses parent and adolescent stressors, as well as indexes of the parent-adolescent relationship. The Total Stress scale was used for the present study, with higher scores indicating greater family stress.

Results: Descriptive values for primary variables and correlations with family stress are presented in Table 1. Overall, parental general and social concerns, as well as level of family stress, were high in the present sample. Greater parental social concerns for their adolescents was associated with higher total stress at a trend level, p=.09 (Figure 1). Surprisingly, total transition-related concerns were not associated with greater stress, p=.23.

Conclusions: Parents reported significant concerns related to the transition to adulthood, which emphasizes the importance of interventions designed for transition-aged youth. Social concerns specifically were associated with greater perceived stress in parents. Currently, many transition-related services focus on improving academic and functional achievement through vocational training. However, it will be important for transition-related psychoeducation programs and school-based interventions (e.g., transition plans, pre-employment training) to target concerns across multiple domains, including social functioning, to support youth as they transition to adulthood.