Questioning The Questions
This week’s edition of the Culture Study newsletter is an interview with one D.L. Mayfield which links to Mayfield’s own newsletter whose recent edition talks about autism tests and quizzes.
These questions didn’t trigger me as much as other tests (I liked the options, especially that I could say “I don’t know” if I was feeling confused). Meaning, I didn’t spend a ton of time thinking about how the questions should have been worded differently or weren’t clear enough (I know, I’m such a fun person!)
While the context here is an online (vomits in mouth) “aspie quiz”, it reminded me of something I wrote last year about an actual research questionnaire that clearly was asking about autistic empathy but in a way that inevitably would make the results completely unreliable.
Interestingly, a new research paper recently dropped looking to understand “autistic people’s experiences of decision making and research questionnaires”.
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.
The results? It turns out that “questions needed context, often questions themselves were unclear and difficult to understand, […] and how measures could have questionable validity for autistic people”.
I dropped Mayfield a line about this paper, because as a late-diagnosed autistic myself I know how much it helps not just to realize that it isn’t that you’re not “a fun person” and that these issues are real and other people fight with them in the exact same way, but also to know that maybe, just maybe, researchers themselves are starting to notice.