Critical Problem to be Addressed and Fiscal Year 2019 Autism Research Program Idea Development Award Area(s) of Interest: Adolescents and adults with autism spectrum disorder (ASD) experience sharply elevated rates of depression. Depression that is untreated or ineffectively treated is a serious public health problem, as multiple studies have found high rates of suicide among adults with ASD. Researchers have made progress in applying and/or adapting standard treatments for anxiety to adolescents and adults with ASD (such as cognitive behavioral therapy and medications), but similar modifications to treatments for depression have been largely ineffective in reducing depressive symptoms among people with ASD. New treatment options for depression are needed. Surprisingly, although research in other populations suggests that psychological health is strongly influenced by social, educational, and vocational experiences, very little work has been done to establish links between positive and negative life experiences (e.g., friendship, unemployment, negative social interactions) and depressive symptoms in ASD. This is an especially critical area of research to pursue, as the exact same factors that are related to depression in typically developing adolescents and adults (e.g., unemployment, peer victimization, social isolation) are common among youth with ASD. Thus, the objective of this research is to enhance the effectiveness of current treatments for depressed youth with ASD by identifying specific day-to-day experiences that are associated with depressive symptoms and quality of life. This objective directly addresses two Idea Award Areas of Interest: mechanisms underlying conditions co-occurring with ASD (depression) and factors promoting success in key transitions to independence for individuals living with ASD. Innovative Aspects of the Proposed Research Project: This project is innovative in a number of important ways. First, this project represents a significant shift in how to think about improving outcomes for those with ASD. Most major studies of outcomes focus on traditional objective indicators of quality of life such as employment, social connectedness, and residential arrangements, which may or may not be attainable or desirable for all people with ASD. However, there has been a groundswell among the ASD advocacy community to instead focus on how to encourage happiness, meaning, and subjective quality of life. Our focus on which contextual factors are most closely associated with depressive symptoms and quality of life is in line with this novel way of thinking and will provide important new evidence that currently does not exist about how to treat depression and promote psychological health in adolescents and young adults with ASD. Our methodology for studying daily experience is also innovative. We will measure multiple experiences that occur throughout each day of the week by using daily reports at the end of each day (for 7 days), collected from adolescents and adults with ASD. We expect this method of reporting to improve accuracy compared to after-the-fact reports of daily experiences, particularly for individuals with ASD (because of concerns raised about the accuracy of retrospective reporting in this group). Finally, in the proposed research, we are leveraging an existing sample for new data collection. This is both innovative and an efficient use of resources. The gold standard for studies of individuals with ASD is for researchers to confirm ASD diagnosis via an in-person evaluation. It can be difficult to distinguish ASD from other developmental difficulties, and study samples that do not have in-person diagnostic confirmation of ASD likely include a proportion of individuals (maybe even a substantial proportion) who would not meet diagnostic criteria for an ASD. On the other hand, bringing every study participant into the clinic for a diagnostic evaluation is costly, meaning that most studies that complete these procedures require exceptional financial resources to recruit large samples or they settle for a small sample size. In contrast, this study proposes to re-contact an established group of transition-aged youth with ASD (the Simons Simplex Collection or SSC registry). Individuals enrolled in the SSC registry have already undergone best-practice diagnostic confirmation procedures as part of the SSC and have agreed to be re-contacted for future research. This offers an incredible opportunity to collect data from a much larger and more regionally diverse sample than would normally be feasible in a project of this size. Impact of the Proposed Research Project on the Field of ASD Research: This project stands to make a significant impact in improving the psychological health of adolescents and adults with ASD. By providing new information about which specific daily life experiences are related to depressive symptoms and quality of life, the proposed project will lay the groundwork for the creation of new interventions to enhance well-being among adolescents and young adults with ASD. Identifying specific social, vocational, and educational experiences associated with psychological health will be particularly impactful because experiences are changeable, making them ideal targets for intervention. Given the extreme variability among individuals with ASD, understanding how these associations differ in particular groups of individuals with ASD (e.g., individuals with high or low levels of social motivation) will directly facilitate the creation of more personalized and thus more effective treatments.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
