Published on 12, July, 2020
I sometimes use the "search" function to look up some questions I have to see if someone in the past has already ask similar questions. And when I look at past posts, like posts that were 6 years old, the people who were actively replying to posts back then (e.g., having many posts/replies and top contributor), pretty much all of them are not actively posting now. Actually, it doesn't even have to be that long, a lot of people who were active 3 years ago are not active now. So I'm curious, what causes people to leave? Is it because they got what they needed (e.g., originally needing advice on how to get a diagnosis and then they got one)? Or is it because they get bored of having to answer the same questions over and over for so long? Or is it because they had some bad experience here? Or is it because they later got a negative diagnosis and felt they don't belong? Or is it because they got too busy in life (e.g., work, family, friends, and other demands)? Or is it because they realised that they like the forum too much that they are spending too much time on it and should take a break? Or is it because they found a different ASD group (e.g., more local, more focused)? Or because they moved to a different country?
Do you think you will still be on this forum 5 years later?
Congrats on coming to the end of the NHS diagnosis process. Regardless of the outcome, we are all here because we can all relate to ASD regardless of whether we have a formal diagnosis or not. Please do come back here and share your experiences.
I think as others have said it's a combination of reasons. For my part I have become at stages thoroughly obsessed with analysing the descriptions of ASD symptoms and comparing and contrasting them with my own life, and drawing great comfort from the descriptions that other people here give about their experiences. But over the last two years since my realisation that I might have ASD, I have re-adjusted my life so that there is now far less tension between myself and the expectations of those around me; this has reduced the strong desire to find answers and to be able metaphorically to point at others and say "See! It's not just me; he/she feels / experiences that too! It's normal for people like me!". In about a fortnight I will come to the end of the NHS diagnosis process and one of three things will happen, I think:
I could be wrong, but that's how I think it will go. There have been weeks where I've signed in to this forum more often than any other website and at least once if not twice a day, and I've valued the mutual support enormously. But nothing is forever - it's just a question of how long.
As to why people go away for extended periods and come back, I don't know.
Thank you for telling me about these. I'll have a look.
Cool! I've never heard of that one previously. Thanks for sharing the info
Hey, I'm the one who started the thread and should have been more responsive in monitoring the comments and replying. I see you posted 10 days ago, and that was 15th June, a Saturday, and I apologise that I am usually online less of the time during Friday night + weekends, though I sometimes do take a peek. But after a couple of days not being actively online, sometimes I miss out on comments when it gets pushed back to later pages because of new posts coming up. I don't think you should judge whether you are welcome or not just by one single post.
I use mastodon.social - bit like twitter but moderated so fascism - free, could use a tag, there are quite a few auties on there and lots of queers.
The question was asked, so I answered honestly in the end. Only one response from someone who knows I am a real person and viva versa. As for most of the people left on the forum, I get more response from a brick wall. I really did expect too much. I expected 2 way or more conversation with supportive people with differing views to all be respectful and respected. I expected NAS to support adults on the spectrum. NAS supports carers, parents and professionals who can pay, not individuals on the spectrum. Members are loyal to their little private PM groups. It’s enough to drive me to hang myself, or at least to have contemplated it in the past. So I quite simply am not the right material for this forum, and only one person has ever been straight up with me in loyal defence of a PM friend. So sod it. Sod NAS. Sod the troublemakers, arguments, competitive atmosphere, sod the nepotism. Sod the lot, bar one. I got it all sodding wrong. There is little mutual support here really, and any emails to NAS re cyber bullying etc never even get acknowledged. So I am sodding off to be a sad sod elsewhere. And who the heck cares anyway.
After a while.thimgs get very reperitive, I doubt whether there are more than twenty different topics.posted in reality. And after a while I can understand your point about having problems in the real world that contributing to the forum.just makes worse.
I don't think it is your fault in any way, it is just that in every hundred people, a hundred of them have different views on what it should be about. And there are mischief makers.whose.only purpose seems.to be to wind others.up.and make.things unpleasant, even perhaps inadvertantly.
But this forum should.not be used as a substitute for the real.world. There is a world out there to enjoy wirh all its beauty and and enjoyment.and wide open spaces. There are places I like.to avoid in crowds, officialdom and the like,.but I find comfort in the sound of birdsong, the chuckle.of.a.stream,.the wind in my hair and the sun on my skin.
Crowds and groups.on forums on the internet can be just as stressful.as.those who you find outside.
Nobody responding? Ok. I get it. I’m a non person to NAS too. I’m off.
Nor do I feel wanted here anyway. I’m just not part of the club. I feel even less included than in the real world. So I’ll work on the real world instead. It’s a bit odd here anyway. I just cannot figure it all out. It’s had a really depressing effect on me. Not everyone, just the general negative stuff. Life is for living, since I have to. Not tapping on a screen about.
I came looking for answers, support and to be supportive. I probably made a mess of it all and realise online is not a good place for someone who already struggles to read body language, intonation etc. I couldn’t even realise whether two people were just sparring like Punch and Judy or whether there were more serious things going on. Nor do I know if I was perceived as helpful or disruptive etc. I only meant to be helpful, but it’s even more difficult than in real life when you haven’t a clue who you are talking to, how they really are and how you are really affecting them, if at all. I’m also thoroughly disappointed with NAS. But that was my fault. Unrealistic expectations. I really am a nobody who needs to go back to observing real people. Online forums are really not suitable places for someone like me. Thanks for the help I’ve gleaned and received though. Sorry I’m not good at contributing.
Good answer.
I initially came here for support following my diagnosis - the forums have helped and I am truly thankful for the advice and support of the members, but I also realised that a number of topics can be bleak (no criticism to anyone as I have contributed my fair share to this) and there are times I just can't process this on top of other stuff I have going on in my life - it could make things worse for me. So I come here when I feel I can, sometimes I contribute, sometimes I just read.
To DC , you are special and I was so glad to get to know you and share many a late nite here chatting, yes you chatting to me yay, WoW hoorah and such like exuberance’s.
I am also a Rabid upvoter and proud of it,
beware the ware rabbit hey.
And to you I give an 028 Lol. Sssshhhh it’s secret don’t you know. ()
take care and so good to see you posting.
Well it’s soon to be my anniversary of joining the NAS forum. 14/06/2017.
I joined just as the whole forum layout was changing, many left as they were struggling to adapt to the big changes in how it worked.
It was a very different feel and I think quite strict in that going off topic was regarded as a real no no,
I was taken to task for voicing my opinion as I hadn’t yet got a formal diagnosis.
There were really nice people here already,
I had read a small piece about a women who had just been diagnosed on a face book article.
It was an epiphany for me, pretty much every thing she recalled throughout her life hit a chord with me, ok so I am Male but her life long feeling of being from another planet, not fitting in, struggling to fit in, it all ticked boxes for me.
I was happy then sad then totally overwhelmed by it all, It also felt like a bereavement as I had lost so much because no one had ever picked up on why I was the way I was.
I had self diagnosed as dyslexic when I was quite young, late reading and writing, very late actually, I hid it well, it took one very special teacher to spot me and give me the information I needed to understand letters and how they all came together to make words and sentences. Once I knew how and why I was very angry st how easy it all was but no one had tried to explain to me in a way I could accept it. I wrote a very long post on here about my dyslexia. I also wrote a very long post about being young.
My dyslexia presents as lack of short term memory mostly, I do however think differently to most.
Anyway as usual I ramble away getting further from my main point , that’s part of me too.
Many come here looking for answers, many find out and some stay, I have no intention of leaving but as my journey into finding out who I am and why has been a difficult one at times I have always had so much support from so many on here, it is indeed like being in a family of like minded caring and understanding people.
some are more special and I was lucky to be part of their journey as mine started.
As DC says “and I do reeeeeealy miss certain people.” I also reeeeeeealy miss certain friends.
True friends who supported me and gave me so much understanding and friendship when I struggled to come to terms with who I was.
I have experienced every emotion going and some.
I see new groups joining up, that’s great and reminds me of all my friends, we had sorrow and laughs .
Many posts were indeed serious but often we would escape reality by going on adventures. Kids if you like! Why not, when life is difficult it helped me to recover and feel a part of a family.
I haven’t posted for a long time , I have now made up for it Lol.
I was well known for offering new members a virtual hug, they didn’t have to accept it but a lot were over joyed at receiving one.
Take care all and keep being YOU who ever that may be. (Virtual aspie hug is this) () () () ()
For special friends I added x()x()x()x
they know who they are ;)
R=29,
S=38,
V=374.
I have been using forums since the early 1990s when BBS (bulletin board systems) were commonly used, or IRC, and am familiar with this problem.
It could be related to the format with which these types of community forums present themselves, and that health related groups tend to be specific in nature - such that, when people have problems they generally look to forums mainly to get their questions answered, thus giving rise to platforms like Yahoo Answers, and not so much to meet people or discuss, which a traditional BBS forum would envoke due to the use of factors such as moderation and voting -- Reddit has largely made these forums obselete.
So in summary, I believe it is because users will tend to ask specific questions relating to their own problems, rather than more of an open ended discussion which invites others to engage in long term. That is not to say users are to blame, but the nature of how the community is set-up, to act as a question/answer platform.
In order to fasciliate more engagement, there needs to be tools such as voting, people making use of polls more and have moderators that will regularly nudge the forum along by creating regular open-ended discuss posts. Users also would have to share links more creating an incentive for users to revisit the website, that is another reason people may stop coming back, because there is not enough novelty (new information being disseminated).
Well I have been busy. I have had a back breaking spring.
Whatever the forum, whatever the topic, if I find people on the same wavelength, then I stick around.
I still don't know whether I am on the spectrum or not, and as I don't live in the UK I will probably never get a diagnosis. Not sure I even want one or need one. I felt stigmatised as a child for the difficulties I did have and that is not something I want to feel again, it brought up such painful feelings in the 90's too.
qwerty said:. I remember reading your posts from those years ago
...Then You have seen Me being both Useful and Naughty...?! (And, see, it took Me Three Years to figure out how to Post Emojiis, yeesh...)
There are plenty of others still Posting for more than 3 Years, though. I am not certain if it is good to 'name names', though... and I do reeeeeealy miss certain people.
But to close this here Post -- THAT LINK which You give there, is fer-lipping useful! I am copying this, now. The trouble is also that NAS changes the contents and addresses as if every 3 Months...!
(I am a Rabid UpVoter and Proud of it.) Good Fortune "qwerty", and Fare Thee Well, for now.
by the way, speaking of other media... I've also noticed that there are some Reddit groups for ASD or Aspergers which are more international and have tens of thousands of members, but there's just so many new posts everyday that its quite hard to follow and keep up. I've only browsed them a few times and haven't joined.
https://www.reddit.com/r/autism/ https://www.reddit.com/r/aspergers/
And I've recently heard about the hashtag #ActuallyAutistic on twitter which are often tweets by autistic people explaining how they experience autism in their own unique way. And there's the hashtag #AskingAutistics which often has some interesting questions and answers related to autism. https://twitter.com/search?q=%23ActuallyAutistichttps://twitter.com/hashtag/AskingAutistics?src=hash
Thanks for the information about the 'British women with Aspergers UK connect group' and 'Just Aspies please'. It's a really good idea to make a new FB account just for this! I actually never thought of it, so even though I knew these groups existed, I never joined them as I didn't want notifications from these groups to over flood my other FB stuff. And I also would like to keep my diagnosis private to some people, so I don't want others to find out that I belong to ASD groups. So creating a new account for these things is a good idea to get access but not interfere with other FB activity!