Assessing the convergence of self-report and informant measures for adults with autism spectrum disorder

Self-report measures are widely used for research and clinical assessment of adults with autism spectrum disorder. However, there has been little research examining the convergence of self- and informant-report in this population. This study examined agreement between 40 pairs of adults with autism spectrum disorder and their caregivers on measures of symptom severity, daily living skills, quality of life, and unmet service needs. In addition, this study examined the predictive value of each reporter for objective independent living and employment outcomes. Caregiver and self-report scores were significantly positively correlated on all measures (all r’s >0.50). Results indicated that there were significant differences between reporter ratings of daily living skills, quality of life, and unmet service needs, but no significant differences between ratings of symptom severity. Combining caregiver-report and self-report measures provided significantly higher predictive value of objective outcomes than measures from a single reporter. These findings indicate that both informants provide valuable information and adults with autism spectrum disorder should be included in reporting on their own symptoms and experiences. Given that two reporters together were more predictive of objective outcomes; however, a multi-informant assessment may be the most comprehensive approach for evaluating current functioning and identifying service needs in this population. Lay Abstract Self-report measures are frequently used for research and clinical assessments of adults with autism spectrum disorder. However, there has been little research examining agreement between self-report and informant-report in this population. Valid self-report measures are essential for conducting research with and providing high quality clinical services for adults with autism spectrum disorder. This study collected measures from 40 pairs of adults with autism spectrum disorder and their caregivers on measures of symptom severity, daily living skills, quality of life, and unmet service needs. Caregiver and self-report responses were highly associated with one another on all measures, though there were significant gaps between scores on the measures of daily living skills and quality of life. It is also important to understand how each informant’s responses relate to outcomes in the areas of employment and independent living. Using self-report and caregiver-report together better predicted outcomes for the adult with autism spectrum disorder than scores from either individual reporter alone. These findings show that there is unique and valuable information provided by both adults with autism spectrum disorder and their caregivers; a multi-informant approach is important for obtaining the most comprehensive picture of current functioning, identifying unmet service needs, and creating treatment plans. This research also highlights the importance of including and prioritizing self-report perspectives in shaping service planning.