Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport

Area of Science:

• Autism research
• Participant engagement
• Research ethics

Background:

• Autistic adults often report negative experiences during research participation.
• Existing 'passports' or 'toolkits' in other sectors address community dissatisfaction.
• A need exists for tools to improve autistic adults' research experiences.

Purpose of the Study:

• To design and develop a Research Passport for autistic adults and researchers.
• To support the inclusion and enhance the experience of autistic adults in research.
• To promote empathetic and ethical autism research practices.

Main Methods:

• Iterative design process involving focus groups with autistic adults and autism researchers.
• Preliminary evaluation through usability testing of a prototype Research Passport in ongoing research projects.
• Feedback collection via surveys from autistic participants and interviews with nonautistic researchers.

Main Results:

• The Research Passport was identified as a useful concept, requiring flexibility and a broad scope.
• Usability testing indicated the Passport promotes positive participant-researcher relationships and structures existing practices.
• Adaptations are needed for improved usability and expectation management.

Conclusions:

• The Research Passport is a valuable tool for promoting empathetic autism research.
• Further design and development are warranted to enhance its utility and accessibility.
• The tool has the potential to improve autistic adults' research participation experiences.