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Depression Screening Tools for Non- and Minimally Speaking Autistic Adults: Feasibility, Psychometrics, and Wider
Ellen Wilkinson1, Keya Pai1, Andrew Jahoda2
1Rutgers University-New Brunswick, NJ, USA.
Abstract:
Depression remains underdiagnosed in non- and minimally speaking (NMS) autistic adults, despite caregiver concerns suggesting high rates of mood-related difficulties, as such this study evaluates the validity, reliability, and feasibility of three established caregiver-report depression measures (Anxiety, Depression, and Mood Scale-ADAMS; Glasgow Depression Scale-Caregiver Supplement-GDS-CS; Mood, Interest, and Pleasure Questionnaire-MIPQ) with 160 caregivers of NMS autistic adults. Participants completed surveys, and a subset engaged in cognitive interviews to assess content validity and usability. Psychometric analyses included confirmatory factor analyses, internal consistency estimation, and exploratory cut-off scores based on parent-reported concern about depression. Results indicated that the GDS-CS had the strongest support, showing acceptable model fit, fair reliability, and high caregiver acceptability. The ADAMS also demonstrated strong psychometric properties and feasibility, with the added benefit of capturing related symptoms such as anxiety. The MIPQ, while designed for individuals with limited language, showed poor model fit and lower caregiver usability. Findings support the use of the GDS-CS and ADAMS as promising tools for screening depression in NMS autistic adults and highlight the need for further validation and tailored mental health assessment approaches for this underserved population.Lay AbstractSome autistic people do not use speech to communicate, even when they become adults. These individuals are called minimally speaking (or nonspeaking; NMS). Many parents think their NMS autistic adult children may be depressed, but few have a diagnosis from a doctor. One reason for this is that most ways doctors check for depression ask about feelings using spoken words. This does not work well for people who do not speak. This study asked 160 parents of minimally speaking autistic adults to fill out three surveys that may help identify depression. The surveys were the ADAMS, the GDS-CS, and the MIPQ. The parents answered questions about how their adult children behave, how often certain things happen, and whether they think their child is depressed. Some parents also talked in interviews about how easy or hard the surveys were to understand and complete. The results showed that two of the surveys, the ADAMS and the GDS-CS, worked pretty well and were quick to fill out. Parents said the GDS-CS was the easiest to understand. The third survey, the MIPQ, was harder for parents to use and did not work as well. This study shows that it is possible to screen for depression in autistic adults who do not speak by asking caregivers the right kinds of questions. It also shows that more research is needed to make sure these tools work for everyone. Doctors and caregivers can use these tools to find people who may be feeling depressed and need more help. This is an important step toward making sure all autistic adults, including those who don't speak, get the mental health care they need.
