#YouCantBeAutistic: Survey Ethics Considerations

A potential respondent commented on the lack of an ethics statement for the #YouCantBeAutistic survey. I’m not a professional researcher and hadn’t even considered that this might be requested, but I did some Googling and have cobbled together my own version of an ethics statement.

  1. This survey will help provide insight into a little-documented part of Autistic people’s experiences. 

This survey is limited in scope by many factors, including the language it is written in (English), the mode of recruiting respondents (social media), and other things I probably haven’t considered.
  2. Participation in this survey is entirely voluntary. The survey consists of at most 23 queries and takes an average of 5 minutes to complete. The actual number of responses an individual participant will be asked to give depends on their answers to key questions. (The first of these branches asks the respondent whether they are Autistic and, if so, how they have been diagnosed—self- or formal diagnosis. The second is when the respondent is asked if they have been told “You can’t be Autistic.” The third and fourth are after the first and second opportunities to share about such incidents.)
  3. Respondents are asked for a name (or username or nickname) by which they can be identified in potential quotes from their responses. They are also asked if they consent to having their responses quoted “when I discuss the results of this survey.” There are options for “Yes” (using the name they provided), “Yes, as ‘Anonymous’”, and “No.” I will honor these wishes.
  4. I have been clear about the fact that I am not entirely sure what I intend to do with the data collected. I expect to write at least one blog post about the data (and potentially several blog posts or longer pieces). As the survey says in its introduction, I might also make the raw data available to others interested in it, but I will anonymize participants’ names in the event anyone but me will see this raw data.
  5. I am not an impartial researcher. I am an Autistic person and biased against people who tell others, “You can’t be Autistic.” That said, the survey is automated, so any bias in gathering information is consistent.
  6. I have asked for minimal identifying information in an attempt to keep this survey as anonymous and safe for participants as possible.

About Eb

I am an Autistic Disabled Filipino-American person. I use ID-first language. My pronouns are she/her/hers or they/their/theirs.

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