Background: Early intervention is associated with improved outcomes for autistic children, but many autistic adults report harmful longitudinal impacts of their early intervention experiences on their autonomy and well-being, and caregivers of autistic children report that many of their concerns are unmet by current interventions. Furthermore, researchers investigating early autism interventions have been slow to collaborate with these stakeholders.
Proposed Solution to the Problem: The project team will convene an advisory board consisting of autistic adults and caregivers of autistic children at different ages, as this will provide the longitudinal lens necessary to ensure that future patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) accounts for the cascading impacts of early interventions on a child’s development. Together, the project team will develop a list of research priorities and principles for early autism intervention research, and tools to build stakeholders’ and researchers’ capacities to collaborate in developing PCOR/CER.
Objectives: The overall aim of this project is to create a foundation for collaborative PCOR/CER early autism intervention research. The following objectives guide this project: 1) to form an advisory board of 10-12 autistic adults, caregivers of young autistic children, and caregivers of older autistic children or adults; 2) to develop a list of research priorities and guiding principles for early autism intervention research; 3) to develop a supplement to PCORI’s Research Fundamentals training specific to early autism interventions; and 4) to develop a list of operationalized engagement and communication strategies to be used by researchers when collaborating with stakeholders.
Activities: Stakeholders and the project team will meet each month via video call to create a supplement to PCORI’s publicly-available training and to develop a list of research priorities for early autism intervention research. Stakeholders will complete surveys throughout the project about their engagement satisfaction, which will be used to design adaptations (e.g., participation via messaging for nonspeaking partners). These engagement strategies will be operationally defined in a tool created in collaboration with additional researchers in the field.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include: a website housing the tools created during the project period, including a tool with operationalized strategies for tailored engagement of autistic adults and caregivers of autistic children.
Medium-term outcomes (0-2 years post-project period) include: the initiation of PCOR/CER research addressing the identified priorities with continued collaboration of the advisory board.
Long-term outcomes (3+ years post-project period) include: the creation of measures addressing prioritized outcomes and skills, continual updating of the tools, and expanded efforts to connect researchers and stakeholders.
Patient and Stakeholder Engagement Plan: The advisory board will consist of autistic adults and caregivers of autistic children at different ages. Stakeholders will attend monthly meetings and guide the content, design, and dissemination of project tools, with project personnel responsible for implementing stakeholder decisions. Primary meetings will be held via video call, but adaptations will be made to meet individual preferences to make participation accessible and equitable to all stakeholder partners.
Project Collaborators: This project is a collaboration between Megan Roberts, PhD, CCC-SLP, from Northwestern University and Morénike Giwa Onaiwu, MA, from Advocacy Without Borders. Both have established relationships with caregivers and individuals from autism organizations who will join the advisory board, including The Color of Autism, the Autistic Women and Nonbinary Network, AllNeurotypes, and Kind Theory. The advisory board will guide further collaborations to disseminate project tools.