Family Support Intervention for Emerging Adults with ASD

Background and Purpose:

A growing population of emerging adults with autism spectrum disorder (ASD) has spurred increased interest in developing interventions to support positive transitions from school to adult life. For emerging adults with ASD, improvements in behavioral functioning slow following high school exit, and there is a significant loss of services for individuals with ASD upon exiting the school system. Given the dearth of formal services for young adults with ASD, it is imperative to offer interventions that increase a family’s capacity to find and create informal supports and activities in the community. We developed a multi-family psychoeducation model, Working Together, designed for disengaged emerging 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 study reports on the development of this family-centered intervention model (Phase One) and presents preliminary data from a study of the Working Together intervention program (Phase Two).

Methods:

Phase One included a comprehensive review of analyses from the largest longitudinal study of adolescents and adults with ASD in order to develop intervention content. Three focus groups provided feedback on the proposed model from key stakeholders including emerging adults with ASD, family members, and service providers. The model and curriculum content were further refined based on this input and piloted in a feasibility study with four families. In Phase Two, feedback from the feasibility pilot was used to create the final model. A randomized-controlled trial (RCT) of the final model was conducted with 60 emerging adults with ASD and their parents. Emerging adults with ASD and their parents were assessed before and after the Working Together intervention on measures of job exploration, parental depression (Centers for Epidemiologic Studies Depression Scale), and satisfaction. 

Results:

Focus group data confirmed the need for family-centered supports. 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. The finalized intervention model thus included 8 weekly group sessions, 2 individual family sessions, 3 monthly group booster sessions, and a method for ongoing resources and referrals. Preliminary results from the Working Together RCT (N=35) indicated that parents experienced decreased depressive symptoms (partial eta² = .11), both parents and emerging adults with ASD reported more hours of active job searching (parent: partial eta² = .11; adult: partial eta² = .14), and emerging adults with ASD reported more work for pay (partial eta² = .11) post-intervention, all medium effects. Additionally, 100% of parents and emerging adults with ASD were satisfied or very satisfied with the intervention program. 

Conclusions and Implications:

The finalized Working Together model decreased parental depressive symptoms and increased engagement for emerging adults with ASD. Future research will examine the effectiveness of the Working Together model on quality of life and long-term employment and engagement in emerging adults with ASD.