Background: Autistics, as consumers, must be able to provide their perspectives in the research process. When researchers and consumers work together, research becomes more appropriate for the autistic's needs. Sometimes it is difficult for consumers and researchers to work together because of different backgrounds and experiences. It is especially important for autistics to have a voice in research through patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) evidence-based practices and for researchers and clinicians to celebrate and not subjugate neurodiversity and neurodivergence.
Proposed Solution to the Problem: The purpose of the Comparative Autism Research Effectiveness (CARE) project is to connect consumers, i.e., autistics and caregivers, with researchers and clinicians to plan and evaluate effective research interventions. The project team will create modules that help consumers understand research and also prepare researchers and clinicians for neurodiversity topics. Then, the researchers will bring teams together in a virtual conference to begin their collaboration and further their capacity building.
Objectives: The primary objectives of the project are to create 10 CARE teams consisting of autistics, caregivers, researchers, and clinicians, to support the teams’ professional development around PCOR/CER and neurodiversity principles and to build relationships across these stakeholder groups for future collaboration related to autism PCOR/CER.
Activities: The CARE teams will complete three training modules on PCOR/CER, neurodiversity, and autism. The teams will then participate in a two-day virtual conference to continue their capacity building and to codesign action plans to improve autism research neurodiverse collaboration. After the conference, teams will create research questions guided by the neurodiversity model of disability.
Projected Outcomes and Outputs
Short-term outcomes during the project period include:
- Project CARE will create researcher-person-partners teams with action plans for taking the steps they need to collaborate effectively in evidence-based CER. Project CARE will create a collaborative environment through an online conference that will be accessible to autistics, family/caregivers of autistics, autism researchers, and autism clinicians.
- Project CARE will create three check-up/follow-up points after the conference to further support integration of actions as one of the products of this project. Outcomes will include reports and publications that will help disseminate results of the project and also through PCOR/CER resources. The project team aims to disseminate findings regarding processes and products through the website of the Therapist Neurodiversity Collective (TNDC) website, an international association supporting autistic and neurodivergent therapy and research, which will house the project and promote the neurodiversity-based recommendations the project yields. The team will also write papers to distribute to other researchers and professionals about how to infuse principles of neurodiversity into their practice.
Medium-term outcomes (zero to two years post project period) include:
- The primary outcome of this project will be the creation of trained autistic-researcher-neurodiverse teams who can actively address CER in autism therapy.
- Secondary outcomes from this project include knowledge about the training process and the conference actions that either facilitated, or did not facilitate, these autistic-researcher-neurodiverse teams.
Long-term outcomes (three and more years post project period) include:
- The team hopes that Project CARE will achieve health equity by engaging autistic stakeholders and autistic researchers in planning future research projects. Studying what matters to autistic stakeholders and what interventions are deemed most appropriate are crucial. Project CARE will continue communication through TNDC.
Project CARE will utilize the following PCOR/CER resources:
- OCHIN- Engagement and Recruitment Guide
- GRID Toolkit from Tulane University School of Public Health and Tropical Medicine
- Digital Health Equity Toolkit from Harvard Medical School
This project will modify and utilize a PCOR/CER Project CARE engagement toolkit for all autistic stakeholders. Use of the Project CARE Toolkit by others engaged with PCORI is a long-term outcome.
Project CARE will continue to disseminate information. TNDC will continue to host CARE materials beyond the end of the project. The TNDC web portal operates in the capacity of a learning management system which can share information and archive recorded presentations from the Project CARE conference. Dissemination of CARE outcomes is targeted toward better healthcare delivery systems concerning racial and ethnic disparities with children autistics, adult autistics, and others with disabilities.
Patient and Stakeholder Engagement Plan: Children with autism and their families and adult autistics are the most integral part of the project, especially because the Autistic Self Advocacy Network slogan is “nothing about us without us.” The CARE project embraces this slogan. The project lead is neurodivergent, one co-project lead is the parent of an autistic, and the second co-project lead is an autistic and certified speech-language pathologist. In addition, the project’s advisory board consists of three other professionals who are autistic (two) and/or parents (one) of autistics. All training materials will be developed with input from the advisory board. Autistics will be asked to provide some of the training during the conference and ensure other materials are autistic-friendly.
Project Collaborators: The project team will partner with Collaborative Labs, which specializes in the design, facilitation, and documentation of highly interactive online planning sessions, to host the virtual conference. The team will also work closely with the TNDC which will host Project CARE on their website and promote the project deliverables, preparation sessions, and guides for researchers to incorporate neurodiversity principles in their work.