Background: Autism spectrum disorders (ASDs) are developmental disabilities that affect approximately 1 in 68 children in the US. Although there is evidence of some abatement of autism symptoms and behavior problems over time (Esbensen et al., 2008; Seltzer et al., 2004; Shattuck et al., 2007; Woodman et al., 2015), ASD is a chronic disability which presents multiple challenges for individuals and their families at each stage of the life course. Further, improvements in behavioral functioning slow down following high school exit (Taylor & Seltzer, 2010) and there is a significant loss of services for individuals with ASD upon exiting the school system (Howlin et al., 2005). Given the dearth of
formal services for young adults with ASD, it may be all the more imperative to offer interventions that increase a family’s capacity to find and create
informal supports and activities. Thus, interventions that help adults with ASD and their family members learn new skills and enhance the effectiveness of their advocacy are necessary. However, currently there are no empirically-based interventions designed for the family (Schultz et al., 2011; Taylor, Dove et al., 2012). To address this gap we have developed a multi-family psychoeducation model,
Working Together, designed for disengaged young adults with ASD and their families. The
Working Together model adapts an approach commonly used in research and practice with individuals with varying mental health conditions (e.g., schizophrenia, bipolar disorder) and applies it to families of individuals with ASD. This model is unique with its emphasis on supporting the family system to increase engagement of individuals with ASD in employment and educational activities.
Objectives: We will report on the process of development of a family-centered intervention model, including data from focus groups and a feasibility pilot.
Methods:
A comprehensive review of the literature was conducted to develop intervention content. Three focus groups were completed to gain feedback on the proposed model from key stakeholders including young adults with ASD, family members, and service providers. The model and curriculum content were further refined based on this input. Finally, a feasibility pilot study was conducted with 4 families. Feedback from the feasibility pilot was used to create the final model to be evaluated in a 12-month randomized control trial.
Results:
Based on a comprehensive literature review, a model was developed that involved 8 weekly group sessions, 2 individual family sessions, and a method for ongoing resources and referrals. Focus group data confirmed the need for family-centered supports for individuals with ASD during adulthood and suggested that the curriculum should also include an emphasis on coping strategies and safety. Results from the feasibility pilot suggested a need for the model to include additional opportunities for individualized support and a high family interest in ongoing booster sessions.
Conclusions: The finalized Working Together model is currently being evaluated in randomized control trial with 54 families.
