Emotion dysregulation (ED) in autism spectrum disorder (ASD) exacerbates social impairment, increases risk for psychiatric and behavioral problems, and often leads to polypharmacy, crisis interventions, and high rates of suicidality. Effective treatment of ED could greatly reduce morbidity and costs and significantly improve quality of life for individuals with ASD. The Emotion Dysregulation Inventory (EDI) is a caregiver report for children ages 6-17 years old that measures rapidly escalating, intense, and poorly regulated negative emotion and dysphoria. However, there are no existing self-report measures of ED validated in adolescents and adults with ASD. Currently, best practice for assessment of emotional and behavioral constructs in ASD is the use of multiple reporters, but this approach is more challenging for adults with ASD when a parent is no longer available or as involved in daily life. Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. The EDI-SR would be the first self-report of ED in ASD. It will be developed through a systematic item refinement process to ensure validity, thereby generating a new opportunity to incorporate patient-reported experiences and outcomes in an overlooked and growing group of adults with ASD. The availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD. Dr. Carla A. Mazefsky at the University of Pittsburgh is conducting this research study.
What are the goals of the study?
With this project, we aim to develop and validate a change-sensitive self-report measure of ED for adolescents and adults with ASD, called the Emotion Dysregulation Inventory-Self-Report (EDI-SR).
What will happen during the visit or online?
This study will occur entirely online and will take less than an hour for participants to complete. Participants will be able to pause and resume the questionnaires at any point. They will be paid $75 for completion of surveys. There are no travel requirements. Overall, it is low burden study. Participants may be invited back 4 weeks later for a single survey re-test for an additional $10.
How will this help families?
Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. Support for ED is a major unaddressed need for adults with ASD. Studies consistently identify ED as one of the top barriers in college, and adults with ASD and their parents identify mental health as a top priority for research. Therefore, the availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD.