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. In addition, 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 analyze their feedback on questionnaire measures to further understand decision making within the research context.
Methods:
One hundred 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 categorize 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 contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research.
Community brief
Why is this an important issue?
Autism researchers often use questionnaires but might not always use well-designed ones. Its important that autistic people feel they can complete questionnaires and provide accurate information about what is important to them. Also, when answering a questionnaire, someone usually must make decisions, for example, about which option best fits their own experiences. But researchers might not consider that making decisions can be difficult for some autistic people.
What was the purpose of this study?
We wanted to find out what autistic people thought about questionnaires and what things affected their decision making.
What did the researchers do?
We created an online survey, which 117 autistic people completed. We had an open question asking participants what affected their ability to make decisions. Participants then completed four questionnaire measures that other people had created before, which had statements followed by tick boxes on different scales (e.g., strongly agree to strongly disagree). After each of these measures, we asked participants to give open feedback. We then identified patterns in the participants' responses.
What were the results of the study?
Participants' decision making was affected by things such as their mood and energy level, having to consider how their decision affects others, the quality and quantity of information provided, pressure on choosing a response, external distractions (like noise), and having to decide quickly. Participants' feedback about the questionnaire measures identified potential improvements. There were some positive comments, but participants often said the measures needed more context to explain them or needed to consider the current context (like how a global pandemic might be affecting their answers). They also said some questions were not clear and difficult to understand, the response options needed improving, or the questions were not relevant for autistic people.
What do these findings add to what was known?
Our findings show how decision making can be challenging for some autistic people, and this could influence their responses when doing research. Participants' responses give important information for autism researchers to consider when using questionnaires. Our findings are further evidence that questionnaires should be adapted or new ones created specifically for autistic people. The findings imply that it is important to involve non-academic autistic people in research.
What are potential weaknesses?
Most participants were female, White, and from Western countries, which limits how our findings might apply more widely. We asked generally about decision making rather than specifically about the research context, and more in-depth interviews on this topic would be useful.
How will these findings help autistic adults now or in the future?
The things we have learned from our study can be used by autism researchers to improve their research design. If they make improvements, this means taking part in research will be more enjoyable and straightforward for autistic people. Autism research can potentially improve autistic people's lives, but we need to make the experience of taking part in research better.
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