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.
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
- Lay out : there needs to be a clear, concise area where people can go to be the single point of access to all things wrt our condition (diagnosed and undiagnosed) to help rather than having to search for the right/wrong keyword on the internet/forums.
- Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers.
- Pinned threads, thematic guest presentations, interactive Q&As
- 1:1 online advice functionality or forum advice, private group discussion functionality
- People could volunteer to lead on this or that support to other members, peer to peer support
- Virtual social groups by topics and interests, like biking,
- Improved functionality, experience and security
I will explain a bit point by point
- Lay out.
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.
- Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers.
Which topics and resources? How different to what is now?
- Diagnosis pathways
- Introductory crash course for newly diagnosed/referred
- Key concepts, research, discussions
- Law, employment, benefits, health, dealing with providers, relationships, education and SEN
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
