Kajsa Igelström, PhD
I've been trying really hard to suppress my excitement and not take too many sneak peeks at the responses to the questionnaire about women's "stimming" and "special interests" that's currently ongoing. 😇
But I did scroll through some of the feedback sections to look for potential issues.
I was happy to see literally hundreds of very positive comments. They actually made me cry from happiness, gratitude or empathy. There were no really major problems, but there were a few things that I thought I might briefly clarify here. (Feedback that is not addressed here will still be taken onboard of course.)
Gender, sexuality and race questions
Thanks to several personal, friendly approaches from individuals from the transgender community, we have tried to refine the phrasing and terminology of the sex/gender questions, but I do realize we still don't get it exactly right. I apologize, but we're improving – I really just need to connect better with you, to understand all the nuances.
We did make some small changes while running the questionnaire, but we are very limited in making late changes as we have to ensure the validity of the study.
The current questionnaire is not perfect, but now it does have enough options to let everyone participate. We will incorporate feedback on sex/gender questions in future questionnaires, and consult with a larger number of you.
We don't ask about sexuality or race in this survey. As always, exclusion of a topic does not equate a lack of interest – we just have to choose a minimal number of questions, or it'd take too long to fill out.
The "autism survey" on the final page
I will not name the questionnaire on the final page of the study. But I will say that we know that it can come across as irrelevant or too rigid.
We include it as a mandatory part, because it will greatly help this research get published and accepted into the scientific community. Please trust me on this. Scientific respect will give us the power to make a difference, and allow us to continue the research program.
But we really do understand how it can feel to answer these questions, and we appreciate that the vast majority tried your best to do it anyway.
Please do not fill it out at random. We know its limitations, and we know it's frustrating for some of you. Perhaps it helps to remember that our research can help the development of more autism-friendly surveys in the future!
Exclusion of other autism-related topics
Each study must be limited to a small number of topics, otherwise they'd either barely scratch the surface, or they'd take hours for you to complete. This study is limited to a couple of topics and exclude other important ones (trust me, there are so many more things we wish to ask!!).
Again, exclusion does not mean a lack of interest. Our hope is that we'll be able to recruit some dedicated participants for a series of in-depth studies covering a much broader range of topics, but this is still in the future.
Difficulties with the "special interest" page
Some participants expressed they had difficulties responding to the questions on the page about "special interests". I think this is in part due to the broader, more open-ended nature of some of the questions. We knew it would be challenging for some of you, but we nevertheless decided to use this format in the very first study.
The reason for the current format is that we did not want our own expectations or biases to influence your responses. It was particularly difficult to design those questions. It is okay to write that you struggled to understand or respond, and still submit the questionnaire. The answers we do get give us a great start, and I saw that this page has in general returned a lot of information from the majority of participants.
Big thanks to the 300 women who have participated so far! We really appreciate Facebook shares and all help we can get to invite as many people as possible.