Neurodivergent-Inclusive Research Practices: A Practical Guide to Enhancing the Readability and Accessibility of Informed Consent for Neurodivergent People

Background and Purpose: Neurodivergent (ND) people are a marginalized group, experiencing chronic invalidation, stigma, and exclusion that results from living in a world designed for neurotypical people. Standard research practices, including the informed consent process, are not immune to exclusionary practices, inaccessibility, and obstacles to meaningful participation. Most informed consent documents are comprehensive but not functionally readable, often too long, complex, and filled with jargon to ensure that participants with neuro-differences fully understand the details of research studies and can make truly autonomous decisions to participate. Barriers in the informed consent process threaten the conduct of ethical research for ND people across all fields of human study. The purpose of this project was to develop a concrete guide for improving the readability and accessibility of informed consent processes to be more inclusive of ND people.

Methods: This project used participatory research methods to adapt university-wide Institutional Review Board (IRB) regulatory language and internal informed consent processes. Over a span of 14 months, we partnered with our university’s IRB readability expert, autistic and other ND community partners in the Pittsburgh Adult Autism Research Community Collaborative (PAARCC), neurotypical and ND researchers to develop a process for improving the readability and accessibility of informed consent documents. First, we revised standard IRB regulatory language for improved readability and specific ND comprehension needs. We then facilitated a participatory review of the amended consent documents and language with PAARCC members and ND researchers.

Results: We produced a comprehensive set of ND-inclusive regulatory language that was approved for use in our study and forwarded to Human Research Protection Office administrators for potential university-wide use. Restructured and simplified consent form documents were well-received by our ND community partners. Our review process was synthesized into a concrete set of steps to enhance the readability and accessibility of informed consent processes for ND people: 1) Revise consent forms for general readability; 2) Revise consent forms with specific attention to neurodivergent needs; 3) Evaluate revisions with formal readability tools; 4) Conduct participatory reviews with neurodivergent people and revise; and 5) Make changes to informed consent policies and procedures that meet ND needs.

Conclusions and Implications: Universal adoption of more readable consent and regulatory language can cultivate more equitable and inclusive human research practices across university systems. Additional inclusive practices should be integrated into informed consent processes (e.g., inviting consent companions, visual aids, sensory considerations). Researchers who want to build ND-inclusivity into their research infrastructure should partner with ND self-advocates, especially those with intersecting marginalized identities and a range of abilities and center their perspectives in this process. Future work should establish inclusive practices for human research participants of all neurotypes, and these practices should extend to all parts of the research process.