#tl;dr - • Wikipedia's main entry on autism is overlong, poorly structured and mostly ignores decades of autistic insights • Epistemic injustice is a widespread problem: too many are not believed about their own experiences, or given the tools to understand them - ThreadSky

fergus.oolong.co.uk • 89 days ago

#tl;dr -
• Wikipedia's main entry on autism is overlong, poorly structured and mostly ignores decades of autistic insights

• Epistemic injustice is a widespread problem: too many are not believed about their own experiences, or given the tools to understand them

Reposted from Autistic Realms (Helen Edgar)

Written by @ferrousmu.bsky.social and published by @thinkingautism.bsky.social . This is important reading material re: epistemic injustice and the forces that shape how Autistic people are seen.
thinkingautismguide.com/2024/11/how-...

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fergus.oolong.co.uk•89 days ago

• Much of Wikipedia's coverage is impaired by a tendency to listen to conventionally authoritative sources over people with experiences of the thing being described (I focus on autism, but this is true across the board)
• Sometimes this is REALLY egregious, as with blanket dismissal of nonspeakers

fergus.oolong.co.uk•89 days ago

• Wikipedia is also vulnerable to powerful institutions (like the ABA lobby) tipping things in their favour both directly and through investment in veneers of respectability
• These issues are difficult to fix thanks to a mix of institutional inertia, stubborn pedants & ideologically driven editors

fergus.oolong.co.uk•89 days ago

• My efforts to improve Wikipedia's autism coverage directly (through editing and discussing on Talk pages) have achieved minor improvements with huge effort
• More people engaging with this stuff who actually know a bit about autistic people could make a huge difference!

fergus.oolong.co.uk•89 days ago

• Some of the omissions from Wikipedia's main autism entry are VERY well-established, mainstream ideas like meltdowns
• I blame their absence at least partly on the excessive, unmaintainable length of this entry.

That entry in full:
https://en.m.wikipedia.org/wiki/Autism

petercrosbie.bsky.social•86 days ago

Another issue with all this is that the English Wiki entry is used as a model for entries in other languages, thus perpetuating many of these (mis)understandings.

petercrosbie.bsky.social•89 days ago

These subjects need to be spun off into their own separate entries

fergus.oolong.co.uk•89 days ago

Probably, yes - but bringing the main entry up to scratch is vitally important either way!

evilceldrud.bsky.social•89 days ago

“The neurodiversity paradigm situates differences like autism as aspects of human diversity to be accommodated and understood, rather than treated or eliminated.” Is this correct?

fergus.oolong.co.uk•89 days ago

Yes, I stand by that.

To add some nuance: it doesn't imply that there is anything wrong with neurodivergent people seeking 'treatments' to help with things we find particularly challenging.

evilceldrud.bsky.social•89 days ago

:-) how is that critical nuance best explained? The cause of actions may be about something external like the environment or other peoples’ attitudes but one of the necessary steps is an appropriate intervention

evilceldrud.bsky.social•89 days ago

There must always be at least two interventions done together- a specific one and a contextual one. We have not yet worked that out and too easily lose the gestalt

evilceldrud.bsky.social•89 days ago

I propose autism is a scenario where understanding of gestalt is very well understood but because most do not understand this the result is conflict

evilceldrud.bsky.social•89 days ago

I see this as a repeat of helio geo centric debate. Autism is not to be accommodated in an existing world view. The world view needs to change to a whole system person centric perspective 2

evilceldrud.bsky.social•89 days ago

https://clivedurdle.wordpress.com/2018/12/02/the-memory-theatre-of-giulio-camillo-and-a-tale-of-three-cathedr/

quantpsychiatry.bsky.social•87 days ago

I actually recently got into editing Wikipedia (https://en.m.wikipedia.org/wiki/User:DoubleDoctorZack is my userpage). I've mostly been focused on editing the misophonia page, which has needed quite a bit of love (also INSAR has no page, only IMFAR; talk page thinks conversion is a good idea but haven't done it yet).

quantpsychiatry.bsky.social•87 days ago

Would be very interested in helping out with cleaning up the autism page (summary style/sub-pages?) and sourcing things in a WP:MedRS way! Idk the overall time I could put in, but getting other autism researchers/community members interested could also help spread the work.

quantpsychiatry.bsky.social•87 days ago

The wikiproject autism is also pretty dead, but reviving that in some capacity would also be helpful.

fergus.oolong.co.uk•87 days ago

Yeah, I was a bit disappointed it was marked at dormant, and I don't know how to undo that, but to be fair it was already pretty dormant when I was working on this nearly three years ago!

Summary style is obviously the way to go, so hopefully that won't meet too much resistance...

fergus.oolong.co.uk•87 days ago

The Med: Reliable Sources thing is interesting! As I hinted at in the article, I think a lot of the most useful things to say about autistic experience are NOT biomedical, and should not be expected to meet those standards - but a lot of the stuff in the article really should, if it's there at all!

fergus.oolong.co.uk•87 days ago

WikiProject: Autism aside, I'm thinking there really ought to be a user group (as there is for LGBTQ editors, for example) for neurodivergent editors, or possibly disabled editors more broadly (or autistic editors more narrowly)!

Any thoughts?

quantpsychiatry.bsky.social•87 days ago

The good news is that I still think much of autistic experience has still at this point been captured in the "lived experience literature," if you know what I mean. Like the topic of masking/camouflaging has a nice review that would meet MedRS guidelines and basically reviews phenomenological work.

nicoledakeauthor.bsky.social•86 days ago

You're right, a lot of the research on Autism is aimed at making parents of autistic children feel more comfortable.

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