"Simultaneously vague and oddly specific": Understanding autistic people's experiences of decision-making and research questionnaires

Abstract

Background: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. Additionally, answering questions within a questionnaire involves decision-making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people’s experiences of decision-making, and to analyse their feedback on questionnaire measures to further understand decision-making within the research context. Methods: One hundred and seventeen participants completed an online questionnaire. In the questionnaire they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorise participants’ qualitative answers. Results: Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions and lack of time all affected their decision-making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people. Conclusions: Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision-making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualised information. Involving autistic people in the design of research is a potential way of improving the quality of research.