How do autistic people use online groups in their information journeys?
Suzanne Duffin (she/her)
Research Associate at University of Sheffield
CALC Conference 2026
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Notes on content
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Session plan
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Background and context
PhD thesis:
“The role of informational support in online groups for people on the autism spectrum”
Suzanne Duffin, 2024, University of Sheffield
Paper:
Duffin SJ, Bath PA, Sbaffi L (2025), "The role of online groups for autistic people in users’ autism information journeys". Journal of Documentation, Vol. 81 No. 4 pp. 1095–1124, doi: https://doi.org/10.1108/JD-01-2025-0022
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Research questions
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Methodology
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Broad themes
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Theme quotes (Duffin et al, 2025)
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Information related themes
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Information quotes (Duffin et al, 2025)
There is such a huge amount of information to process and make sense of when talking to people, from exactly what is being said to how it’s said as well as trying to interpret body language. I often find that it takes days to process all the information from interactions with one or more people, while reading and writing require fewer forms of information processing. [Jen]
I prefer written information because it allows me to process the information in my own time and to refer to it as and when required. [John]
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Information quotes (cont.)
. . . the access to information is beyond helpful . . . if I had had access to this kind of information in the early 2000s and sort of late 90s it would have been a different world . . . things I’ve done all my life without relating to the word stimming, I didn’t even know that was a thing . . . I had to live my whole life not knowing, knowing I do something strange, but not knowing there’s a name for it. [Richard]
The Google skills needed to investigate autism are a lot higher than for other subjects I’ve tried to research… exacerbated by the absence of offline support meaning you have to undertake that search without guidance… for a lot of clinical information online from nhs-like organisations, you need to already know the terminology of autism to even be able to find it, as well as needing to already know or suspect that you are autistic in the first place… [Luke]
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Information needs and information behaviours
RQ: How might autism influence the informational support needs and information behaviour of adults who use online groups for people on the autism spectrum?
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Theme relationships. From: Duffin SJ, Bath PA, Sbaffi L (2025)
Online groups and autism information journeys
RQ: What is the role of informational support in online groups for autistic people?
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Participants’ autism information journeys��From: Duffin SJ, Bath PA, Sbaffi L (2025)
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Reflections
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Questions
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