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

Abstract

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.

The Social Support Network of Adults with an Autism Spectrum Condition: An Exploration Using the Network in Action-Questionnaire

“…Also, proxies reported that more additional services were needed than adults reported themselves. By contrast, no differences between the two forms of report were found regarding current ASC symptoms (Sandercock et al, 2020), although this finding is inconsistent with previous research (Lever & Geurts, 2018). However, it is unknown whether there are informant discrepancies when it comes to the social support network of adults with an ASC, even though information about possible discrepancies could be of value for effective support.…”

Risk mitigation behaviors to prevent infection in the mitochondrial disease community during the COVID-19 pandemic

“…Additionally, in order to capture the broad scope of MtD across the lifespan, both pediatric and adult populations were included, which required that our respondents were a mix of patients themselves and caregivers responding on the patient's behalf. This methodology has been used in other diseases where presentation occurs across the age-spectrum, such as sickle cell disease, cerebral palsy, autism and encephalitis [31] , [32] , [33] , [34] , [35] . While the identity of the respondent was controlled for in our model and not found to be a significant predictor of RMBs, it is possible that in a larger or different sample, patients themselves may answer differently than their caregivers [36] .…”

Dental experiences of a group of autistic adults based in the United Kingdom

“…All diagnoses were self‐reported by the participants. Individuals who self‐diagnose were included, as self‐reporting has precedents in other research, and self‐report and informant measures have been shown to be highly accurate 35–37 . Further, many people (e.g., females and adults) still struggle to receive an assessment and diagnosis of autism in the United Kingdom due to long wait times and other complicating factors 38,39 …”

“…Individuals who self-diagnose were included, as self-reporting has precedents in other research, and self-report and informant measures have been shown to be highly accurate. [35][36][37] Further, many people (e.g., females and adults) still struggle to receive an assessment and diagnosis of autism in the United Kingdom due to long wait times and other complicating factors. 38,39 Significantly more autistic participants reported an additional need than non-autistic participants; χ 2 (1, 80) = 21.517, p < .001, d = 1.200.…”