Autism spectrum disorders (ASDs) are developmental disabilities that affect approximately 1 in 88 children in the US (CDC, 2012). Although there is evidence of reduction in severity of symptoms from childhood to adulthood, ASD is a lifelong disability requiring ongoing support. Following high school exit, there is a significant loss of services for young adults with ASD, with many having no meaningful daytime activities. In our previous research, we have found that over 25% of adults with ASD who do not have an intellectual disability (ID) are disengaged from work or post-secondary education (Taylor &Seltzer, 2011). Further, despite a pressing need for research and interventions during this stage of life, there is a paucity of programs for adults with ASD and there are no empirically based interventions designed for their families (Taylor, Dove, et al., 2012). The proposed study addresses this gap and focuses on young adults with ASD who are disengaged from work or post-secondary education. Past research has demonstrated that family psychoeducation programs can reduce high levels of stress and emotional intensity in the family, known as expressed emotion (EE), and that this reduction leads to better outcomes for individuals with mental health conditions (McFarlane, Dixon, Lukens, &Lucksted, 2003). Our preliminary experimental work has shown similar benefits of psychoeducation for adolescents with ASD and their families, with evidence that parent and adolescent mental health and adaptive outcomes can be optimized during the transition out of high school. Based on our previously-developed psychoeducation model with adolescents with ASD, we propose to (1) develop a new psychoeducation intervention entitled Working Together, for use with disengaged young adults with ASD (without ID) and their families, and (2) conduct a randomized waitlist control study of the effect of this intervention in a community sample. We will conduct focus groups to adapt and develop the curriculum and pilot the curriculum with 7 families to determine feasibility and acceptability. Next, 56 families of disengaged young adults with ASD (defined as working/in school <10 hours per week) who live at home will be recruited to participate in the intervention and randomly assigned to either the intervention or a waitlist control condition. The Working Together intervention will involve 2 individual-family joining sessions, 8 weekly group sessions, and 3 booster sessions for adults and their parents (who meet separately). Mediating (family capacity, family climate) and outcome variables (engagement in adult roles, adult behavioral functioning,) will be measured at baseline and at 3, 6, 9, and 12 months. We hypothesize that families randomized into the initial intervention condition will show greater improvements in adult role engagement, adult behavioral functioning, and family capacity and greater decreases in EE (a measure of family climate) compared to families in the waitlist control condition.

Public Health Relevance

Given the rapid increase of autism diagnoses since the 1990s (Gurney et al., 2003), more young adults than ever before have an ASD diagnosis, creating an urgent need for interventions that promote continued behavioral improvement and increase engagement in adult roles (i.e., employment, post-secondary education). The proposed study will develop and test a multi-family group psychoeducation intervention for young adults with ASD and their families, with the goal of increasing engagement in school or work and improving adult functioning.

National Institute of Health (NIH)
Planning Grant (R34)
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Special Emphasis Panel (ZMH1)
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Juliano-Bult, Denise M
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University of Wisconsin Madison
Schools of Medicine
United States
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