Published on 12, July, 2020
Disclaimer: I am an aspie, I am not from the NAS.
In the spirit of self advocacy, having a say and peer to peer support, there were discussions of the things that would help autistic adults in a really helpful way.
https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-like
One of the frequently mentioned area was the improvement of the online forum, its CONTENT, POSSIBILITIES, and STRUCTURE
This is not a discussion about technology, although it is welcome and helpful too. What information, how organised, which topics?
Hence, this thread is the discussion, like a consultation of what would be helpful and how it could look like, how it could be done. Completely informal and all comments are welcome.
This is an attempt at collaborative working,
so tell if there is anything in the written below that you would like to add, remove, put a different emphasis on.
Some of the thoughts so far:
An online forum
I will explain a bit point by point
Maybe there should be a front page with the structure of the forum and clear sign posting
There should be a resource and knowledge area where one can access some key documents, concise articles and resources without going into discussion threads. The question will be how is it different to current NAS website? Maybe it should link to the NAS pages but also have additional resources, the key point it would serve as a sign posting tree (sorry I hope it makes sense) with some comments maybe.
This resource area could be fragmented by forum, or topic, liked to the forum landing page or it could be a ‘solid’ separate resource section which links back to the forum. [discuss]
The entry to resource area could be a paragraph with the links to the resource area landing page on top of forums or a totally separate resource and sign posting area, a separate landing page linked to the front page from where there would be branches into topics with resources, links to the forums, but not showing forum threads on that page [DISCUSS]
I think it would be good if forums had subtopic forums, so one could go and look at a particular topic of interest, for example the diagnosis, inside the adults forum. [just think in terms of layout structure)
I think it would be easier if within the thread messages appeared in chronological order rather than multiple sub threads, but that’s me.
Which topics and resources? How different to what is now?
SUGGESTIONS?
3. Pinned threads, thematic guest presentations, interactive Q&As
Would it be interesting to have some specific very good threads pinned on top of the topic forum as a resource?
Would it be good to have a guest speakers style things, get a list of very targeted questions, get a professional to to write a little blog, addressing some of the questions, it would be interesting if it would go beyond generic basics, some really targeted, specific aspects that autistic people struggle with. Whom would you invite?
Interactive Q&A like get questions, and having a live discussion thread ? Whom would you invite?
4. 1:1 online advice functionality or forum advice, private group discussion functionality
More than talking 1:1 via PM with friends, this is about ‘requesting’ a 1:1 conversation as a peer to peer advice on a topic where more sensitive and private details could be discussed without being visible on the web. advice from a specific named poster or from someone with ‘expertise’. It should be clear this is just online advice forum, people don’t have ‘qualifications’ and can just share their experience and opinion. This is to be flagged clearly. We could define clear rules, does and don’ts.
The same private discussion I private thematic groups would be good as well. Here you could run a thread with a number of people <=20, which would not show on the forum, members only. Could limit/define which discussions are not on, in line with general rules or only have private group topics which are pre-authorised.
5. People could volunteer to lead on this or that topic to other members, peer to peer support
This is already the case, people share their experience on relevant threads
6. Virtual social groups by topics and interests, like biking
Would it be good to be able to find people with similar interests and talk to them or even meet up?
7. Improved functionality, experience and security
I think messages displaying chronologically would be good…
Please share your thoughts, discuss this proposal
I think the problem is not only technical - there's also the issue of moderation, I've no idea what NAS's guidelines for moderators are but I've seen some grim racist bullying, random ganging up etc which doesn't seem to be dealt with? I think it's possibly even more important than the tech to have clear ethical guidelines and sensitive moderation? Some people are being bullied out of the forum altogether - give how much bullying we experience in the world in general, this is very upsetting. I wonder if AS people are involved in setting ethical guidelines or moderating?
Secondly, how are we interfacing collectively with NAS to discuss our needs and service provision?
The moderation here is non existent. The problem here is NAS and the fact that they seem to think moderators can pop in if they get time to look up on a bunch of people they do not know. Forum moderation does not work this way. The other problem is the institutionalised nature of the site and therefor the forun. It will never be user friendly if it is not run by members. NAS volunteers are probably more worried about perceived legal angles of any actions they take than are they getting the job done. Wi live in a blame culture where whatever you do you can't keep everyone happy
As i have said i moderate a forum but I am a user of that forum. I act on my own behalf to keep order and not as a representative of the site owner and if I think someone needs telling to just shut up and stop being a nuisance I do so without fear of having to justify my actions. The agreement is that I am trusted to be fair all round and generally do my best.
Any forum NAS runs will always be a mess because users will have no say in it's format and running and the moderators are unknown quantities that have no stake in the forum.
I agree, it is the problem with moderation. Actually to avoid ganging up one need good moderation guidelines and active moderation. So problems don't escalate. I've seen moderation on another site and I like the following aspects:
There are guidelines that reflect the values of the site and the law of course
The moderator is knowledgeable in the topic and understand the audience, what is sensitive to particular audience, how they react.
Moderation is active - messages that violate the guidelines are deleted by the moderator directly or after report.
Once a few messages of particular poster are deleted, they usually adapt their language. You keep doing this until the tone of the conversation becomes productive.
You can appeal against deletion or even having the message edited.
Repeat persistent offenders can be banned.
I think for an autistic forum, the guidelines should include amongst other things something about autism hate and deliberate trolling/winding up ....
Please do
Very interesting point. Perhaps we need some further thought on how to do this in practice. Like disambiguating alert, comment asking to clarify?
Agree very much with these points. It seems like the lack of moderation is a major issue on this forum.
I wonder if any of the moderators are reading any of these? There are many good suggestions in addition to the observation that moderation is lacking. I wonder if they care at all?