Guiding Principles and Research Priorities for Early Intervention Autism Research

We hope that researchers will use this tool to learn more about autistic people and caregivers’ perspectives about desired therapies and supports provided through the EI system. Researchers should use these ideas to inform the therapies, outcomes, and study designs they use in their future research. This will make research more relevant to community members (i.e., in research terminology, more “patient-centered*”).

Caregivers play a critical role in making decisions for their child’s care, especially in EI; caregiver decision-making about goals, strategies, and therapy contexts is a core component of EI policy and practice. However, current research may not be designed in ways to help caregivers make these critical decisions for their child’s care. Furthermore, community perspectives about ideal practices have largely diverged from the practices studied in research contexts with the increasing popularity of neurodiversity frameworks and conceptualizations of autism. Caregivers with children who have recently been diagnosed with autism are often learning about autism and neurodiversity for the first time, and may receive conflicting messages from the autism/autistic communities (typically informed by neurodiversity and social models of disability) and research and clinical contexts (typically informed by traditional frameworks and medical models of disability).

Comparative effectiveness research (CER) is a framework that researchers may use to design research that helps caregivers make decisions about their child’s care. CER refers to research that compares the benefits and harms of two or more therapy approaches. CER should be used to compare how new and existing therapeutic approaches impact outcomes desired by the community, and/or impact outcomes that are not prioritized or seen as harmful by the community. CER can also be used to test adaptations to existing therapeutic approaches that better meet the needs of different community members and populations.

Autism is a diverse diagnostic category, and each autistic child has a unique pattern of strengths and challenges across developmental domains. CER that incorporates a variety of therapeutic approaches and a wide range of outcomes of interest to the community will help caregivers make decisions about the best approaches to use with their child. There is robust community conversation about these topics, but little rigorous quantitative work to help caregivers make more well-informed decisions. Community-engaged CER will help researchers understand adaptations and novel approaches desired by the community, and provide community members with opportunities to rigorously investigate the benefits and harms they personally experienced in EI therapies on a larger scale.

This tool includes information about desired benefits and community members’ experiences of harms to inform the inclusion of such community-prioritized outcomes. Furthermore, we include information about desired therapeutic approaches that researchers should study in the future. Together, this can be used to inform the conceptualization and design of patient-centered* CER that will help caregivers make informed decisions about their autistic child’s EI care.

*We use the term “patient-centered” in reference to research frameworks such as patient-centered outcomes research. We do not use this term to imply that autistic children are inherently “patients” with a medical disorder that needs to be cured or eliminated. We will refrain from using this term outside of the context of the research frameworks.

We used group discussion and structured activities to generate the principles and priorities. We held monthly meetings and activities with 11 community partners, and an additional six community partners participated by reviewing drafts of the tool and contributing feedback outside of meetings.

Guiding Principles

The project team extracted some “overarching themes” from these activities to draft the initial guiding principles. Community partners then reviewed the list and provided feedback, and this iterative process continued until the list was finalized through consensus of our community partners. The guiding principles should be embedded across EI autism therapy research topics.

Research Priorities

The list of research priorities was initially generated by the community partners through group discussion and independent activities (e.g., answering reflection questions), and organized by the project team. This list was reviewed by community partners and updated based on their feedback through an iterative process. Priorities are influenced by a wide range of factors like a person’s cultural background, gender, therapeutic experience, research experience, knowledge about autism, neurotype, personal connection to autism, and more. So, our list includes all ideas provided by our community partners and we do not rank them in any particular order so as not to prioritize specific perspectives. We also include “supporting evidence” from experimental research, qualitative studies, and other sources to provide information about why we believe these priorities are important

Funding: 

This project is funded through a Patient-Centered Outcomes Research Institute (PCORI©) Eugene Washington Engagement Award (EACB-26927). The content is solely the responsibility of the authors and does not necessarily represent the views of PCORI©. 

This tool was a collaboration between 17 community partners (autistic people, autistic caregivers, non-autistic caregivers) and researchers. The project leads are Jordan Lee, Morénike Giwa Onaiwu, and Megan Roberts.

For more information about who was involved, check out “About the Team.”