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High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant‐structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families. Lay Summary: Much of autism research uses questionnaires completed by autistic people themselves or someone who knows them well. However, we often do not have a good understanding of how these types of questionnaires work among autistic people. In this commentary paper, we summarize important issues in this area of science, identify things that may get in the way of making progress on these issues, and provide recommendations and resources about what to do next. [ABSTRACT FROM AUTHOR]

Parents of infants requiring neonatal intensive care unit (NICU) hospitalization often experience increased rates of distress, trauma, and perinatal mood disorders. Untreated parental mental health conditions have short- and long-term effects for infants and families. While some NICUs provide varying degrees of mental health supports for NICU families, these services are not universally or systematically integrated in US NICUs. Multiple factors contribute to this gap in care, including mental health stigma, funding constraints, and lack of staff training and capacity. In an effort to address this gap, we used a participatory action research approach, guided by a Patient and Stakeholder Engagement model, to partner with graduate NICU parents and patient-facing NICU staff to identify parental mental health needs and ideas to address them. Through efforts to mitigate power differentials and engage parents as research and program development partners, our work shaped NICU practices, programming, and subsequent research. [ABSTRACT FROM AUTHOR]

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families., (© 2024 The Authors. Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)