Talking about autism-thoughts for researchers.
Speak and write about autism the way your client asks you to—no labels without consent.
01Research in Context
What this study did
Robison (2019) is a short think-piece, not an experiment.
The author asked: when we write or talk about autism, are our words kind and accurate?
The paper gives plain tips for researchers so they stop saying things that hurt autistic people.
What they found
There is no data table.
The finding is a warning: language that sounds clinical or pitiful can spread stigma.
Elder urges person-centered phrases like “autistic adult” or “person on the spectrum” only if the person likes it.
How this fits with other research
Shogren (2024) widens the same plea to all intellectual disability work. That paper says “do research with, not on” and echoes Elder’s call to share power.
Hull et al. (2021) show the idea in action. They let autistic adults set sexuality research goals, proving respectful talk can steer the whole agenda.
Neuman (2018) mirrors the method. Both papers are short, punchy position pieces that tell behavior analysts to drop jargon and speak like a neighbor.
Why it matters
Your intake form, progress note, or parent email is a mini-publication. Swap “low-functioning” for “needs daily support,” ask clients their preferred label, and read it back to them. These micro-moves cut stigma and build trust before the first trial begins.
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02At a glance
03Original abstract
At the 2019 strategic planning meeting the International Society for Autism Research (INSAR) board discussed the question of appropriate language to be used when speaking or writing about autism or affected individuals. Board members articulated a wide range of views on this subject, making clear that there is no single simple answer. This commentary was inspired by that discussion. It is by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism. Autism Res 2019, 12: 1004-1006. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: How should researchers talk about autism? Personal reflections on writing and speaking about autism, with particular regard for affected individuals, be they autistic people, people with autism, or family members. This commentary is authored by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism.
Autism research : official journal of the International Society for Autism Research, 2019 · doi:10.1002/aur.2119