Background: Children with autism spectrum conditions (ASC) experience a variety of challenges, including problems with social communication, cognition, and adaptive skills. Multiple types of early intervention (EI) are available; yet, data about how to select, prioritize, and individualize intervention approaches are lacking. Further, there is a mismatch between the range of outcomes studied in research and the values described by stakeholders like adults with ASC, caregivers, and clinicians. This may reflect the fact that stakeholders have rarely been engaged in discussions about which outcomes and measurement approaches should be used in EI research.
Proposed Solution and Activities: This work will develop a sustainable model that puts stakeholders at the center of all stages of ASC EI research. Project Year 1 (Y1) will focus on helping stakeholder teams develop an EI research agenda and stakeholder consultation framework. Project Year 2 (Y2) will use online surveys and phone interviews with national stakeholders and researchers to refine the research agenda and consultation model. Finalized materials will be disseminated broadly across stakeholder communities and stakeholder teams will be available for consultation to research groups.
Objectives and Outputs: In the short term (<2 years), the project team will create a collaboration of EI stakeholders; a research agenda to guide future EI research; a stakeholder consultation model; and materials to support dissemination of the research agenda and stakeholder consultation model. In the medium term (2-5 years), the team will continue active engagement of the stakeholder group; provide consultation in stakeholder collaboration to other ASC research projects; obtain grant funding for a stakeholder-driven comparative clinical effectiveness research (CER) project. In the long term (>5 years), the project team will complete a CER trial and expand the model of training and stakeholder consultation to research activities in other health conditions.
Patient/Stakeholder Engagement Plan: Stakeholders will include 10 adults with ASC, 10 parents of children with ASC, and 10 clinicians to form six local stakeholder teams. Teams will meet bimonthly during Y1 to shape the research agenda and consultative model. Teams will nominate one member to attend quarterly collaboration meetings. During Y2, the draft research agenda and consultation framework will be refined by a national group of researchers and stakeholders using online Delphi surveys and interviews. Stakeholders will be paid for their efforts throughout the project, and will be engaged as equal project partners. This will include providing input (including co-authorship) on development and dissemination of work products and co-presenting in both academic and community forums.
Project Collaborators: The project lead, Katherine Walton, PhD, is located at Ohio State University in Columbus, Ohio. Allison Wainer, PhD, will serve as the site co-PL at Rush University Medical Center in Chicago, Illinois, and will recruit and facilitate stakeholder teams in that location. Walton and Wainer are licensed clinical psychologists and researchers specializing in EI for children with ASC. They will work closely with local stakeholder organizations to recruit 30 individuals to serve on the stakeholder teams. These stakeholder team members will be the driving force throughout the project, and will serve a lead role in the development, refining, and dissemination of the research agenda and stakeholder consultation framework.
The enhancement to this project will identify strategies to broadly support virtual engagement for individuals from the autistic community. The project team will take advantage of existing partnerships to pilot test stakeholder involvement in the development of research-related activities. The team will also develop a series of engagement questions and activities related to the impact of COVID-19 on young children with autism and their families, and the acceptability and feasibility of remote participation and data collection in this population.