Codesigning and Evaluating a Novel Tele-Assessment Tool for Autistic Adults
Abstract
Considerable attention has been paid to the diagnosis of young autistic children, including recent use of innovative telemedicine assessment tools whose use and benefit has been dramatically accelerated during the COVID-19 pandemic. However, it is increasingly recognized that (1) many autistic individuals are not identified as young children, and (2) accurate identification of autistic adults can help provide meaningful understanding and supports that may ultimately promote autonomy, inclusion, happiness, and improved quality of life across the life span. Local expertise and diagnostic pathways are often extremely limited for undiagnosed adults. Telemedicine has the potential to address many traditional barriers to care access related to geography and availability of providers; however, there are no available psychometrically sound, validated tools for remote assessment of adults with autism-related concerns. The explicit goal of this project is to develop and evaluate a tele-assessment tool and procedure that supports diagnostic decision-making for adults. The objective of this proposal specifically aligns with the FY22 ARP Idea Development Award Area of Interest related to Improving the diagnosis across the life span. In this study, we will co-produce of a telemedicine tool for assessment of autism in adults. We will use our established innovative methodology for fusing advanced data analyses with shareholder expertise by (1) using a clinical research registry to identify key behavior targets and (2) translating these key behaviors to explicit assessment techniques for use via telehealth. We will do this in full partnership with autistic adults and international experts in autistic adult assessment. We will then deploy and evaluate the performance and potential clinical value of the novel telemedicine tool in relation to traditional in-person assessment methods. By co-producing a tele-assessment tool for autistic adults via fusion of computational, clinical, and shareholder expertise and directly evaluating its performance relative to traditional assessment measures, we will gather crucial data for further deployment, investigation, and understanding of its true impact on better supporting and engaging undiagnosed adults across diverse communities of care. We expect this work to yield a tele-assessment tool (1) targeted to key areas of service access and health care disparity for autistic adults that (2) can be rigorously evaluated to accelerate appropriate, meaningful use across settings. We will make the developed tool freely available across the life span of its development. Beyond simply creating and validating a new tool for the potential direct benefit to autistic adults, we seek to understand and transform the landscape of diagnostic service delivery using community-informed and co-designed processes, maximizing the potential for uptake and equity in care access. We view this work as a part of a larger, scientific movement in which diverse voices are included in the creation and study of novel tools and paradigms to address and overcome current disparities in autism-related care. It is also likely this tool could be used across research and other assessment contexts to better engage and support autistic adults. The current proposal is innovative in a significant number of ways, among which are principally (1) emphasis on stakeholder co-production to create meaningful approaches for a traditionally underserved population of autistic adults; (2) measure development fusing computational strategies, clinical expertise, and stakeholder partnerships; (3) use of telehealth platforms for evaluation and diagnosis; (4) rapid response to ongoing limitations to service access amplified due to COVID-19; (5) refinement of new measures that will increase access to underserved and marginalized populations; (6) focus on adulthood as critical point for diagnostic improvement; (7) methodology that partners with s
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Jan 04, 2024
- Source ID
- HT94252310778
Entities
People
- Zachary Warren
Organizations
- United States Army
- Vanderbilt University