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Feedback request from a researcher


Hello. If you are reading this, I am hoping you might be willing to offer any helpful thoughts for this allistic ally, a researcher of color who had a specific question regarding some of the inclusive autism language guidelines. Basically, when the *actual word/terminology one must use is already inherently stigmatizing and the alternatives are not suitable, how might you suggest they handle it in a way that centers autistic people? Like a “least-worst case scenario” type of thing? If you don’t have anything practical/helpful to offer, please do not bother to comment. I’m not interested in entertaining drama; I’m just trying to find a way to help a friend who is genuinely trying to find a way to do things better. I am not in the “hard” sciences myself, so this is not my area of expertise. Hoping others can chime in and help her and her students out.

Please note: If you have an idea that might help, please answer the survey to share it – although autistic input is strongly encouraged, you do NOT need to be autistic to respond as long as you indicate as such in your answer.

Names and email addresses are not being collected, but if you wish to share your name and/or your contact info with this researcher, feel free to include that in your response also. Doing so is not mandatory, but you are welcome to if you’d like. MGO

The Situation and the Question(s) Being Asked

“I’m seeking helpful suggestions regarding how to address communicating information regarding respectful terminology in research and reporting statistics (as a whole). Several of my students in our research center have received very sharp feedback, and in one instance, aggression, when presenting at scientific meetings. This has occurred because they used the word “risk” repeatedly, as is standard in our field(s). 

We want to find a way to be respectful to autistic people who are following the work that still allows us to communicate accurately, and for quite some time we have been earnestly seeking other options. We have not yet found equivalent terms that convey the same meaning. We’ve had conversations with various colleagues on the spectrum about how to handle this, and they could not come up with a suitable alternative word. However, they strongly suggest that prior to presenting any data, our students should be certain to clarify what is meant by “risk” at the beginning of the presentation so that it can be understood in context and hopefully reduce any sense of stigma. But I have not spoken about this at length with autistic people from other disciplines and would like to get more feedback. What are your thoughts?”

Additional Info/FYI 

More context from MGO: Scholar’s lab is focused on neuroepidemiology, environmental epidemiology, climate justice, biostatistics, ecological disparities related to race, and related topics. Autism is one of the conditions that is intertwined with their work, but it is not the only; there are other neurodevelopmental, neurodegenerative, and various acquired conditions that they frequently deal with as well. 

To provide anonymous feedback for this researcher, please complete this very brief (one question) survey: