AS people, please can you help me?

I only joined a couple of months ago so I guess I'vee missed a lot of history. Glad to have done too I think.  You've got me questioning myself now, wondering why I'm so oblivious to this forum's failings.

I was very glad to find that it exists at all.  All I;d come across before fining this NAS forum was the Wrong Planet forum, which I find much more annoying than this one in every way except one. The one way in which this forum seems to me to be inferior to Wrong Planet is that it has far too few contributors. Wrong Planet has so many contributrs that new posts/threads arrive almost by the minute.

Would any of you who find this forum so terrible please say why? I mean, giving some sort of detail to the otherwise vague 'lack of support' allegation?  I'm not trying to interrogate or take sides, I am genuinely baffled about what's so bad about it, and what it's fair to expect. Thanks.

Classic Codger, I think you've picked up on the general vibe of negativity that comes with being a diagnosed ASD person on the spectrum on this forum.

The main reason I rarely post and have actually gone to lengths to avoid this forum is because of three key reasons:

a) Parents wanting to 'fix' their kids, not neccessarily in those words but its always implied. The constant barrage of words implying that children on the spectrum are a burden upsets and repels me, too much 'they're different how do I make them stop?' and not enough 'how do I make them happy?'

b) I feel like an ant in an ant farm. Its easy to feel dismissed, or problems belittled/outright ignored by anyone from the NAS. So far the only help I have ever had from this forum is from the 'veterens' such as yourself, Longman and Recombiantsocks (sorry I'm a bit to upset to spellcheck your name right now R). Its us, vs everyone else, with the Mods stepping in and censoring our pleas for help or search for reassurance.

-And no, refering someone to the same page of NAS website with generalised information harvested by NTs and no one to deliver adequate tailored information does NOT count as helping. Sorry Mods.

c) The forum simply doesn't support community bonding among those with ASD. Other than uniting around posts like this, we aren't ACTUALLY a community. We're volunteers trying to do the NAS' work for them with little to no recognition or any appreciation. I know of others on the spectrum who once joined this forum only to abandon it because of this lack of community. I first joined approximately five years ago, and have moderated my amount of time spent here since. This isn't a forum for those with ASD. Its a forum for the carers with the odd 'bone' thrown to those on the spectrum.

I could go on for far longer but I am aware of the need to 'censor' myself before someone gets offended. Its so easy to fall into an 'us' vs 'them' mentality when everything is catered to the NT parents (who rarely ever get the professional help they need).

If the members on this forum with ASD went silent in protest, there would be no forum.

Hi Longman,

I am not convinced your assertions are shared by the majority of members of this community. I do not see the forum being "killed off" by moderator actions.

I could equally assert that overreaction to reasonable moderation and use of insulting phrases puts off people joining and participating. We all bare responsibility for creating a welcoming space. It also has an effect on our moderators although this is not something I cannot, of course, discuss publicly.

I and the team here have listened to the points about moderation and have revised our approach. I'm sorry if this does not satisfy you.

Perhaps we should further this 1:1 conversation by email?

Bob C Digital Services Manager

I confess I've completely missed this thread until now, being involved in other things the last few days. Consequently i've responded rather differently to Bob's posting asking for feedback, though reflecting some of the arguments here.

To get back to classic codger's original post, what drives me to distraction on this site is the moderators' presumption that a public reprimand is acceptable, every time one of us uses a wrong word!

OK so I've had it explained to me it is not a reprimand it is just for information. That's not the way it comes over.

The rules, not that they are at all clear, say we will be messaged privately in the first instance over a difficulty.

This forum is being killed off by the school ma'mish approach to moderation. People are afraid to post on here because they fear being put in their place by over-officious moderation.

And yes I'll get told off now for not appreciating the sterling work done by volunteer moderators, some of whom are on the spectrum.

This is a site for people on the spectrum. If you cannot get senstive moderators, it shouldn't be a case of yet one more person leaving, let's just wrap up the whole thing.

Thanks for you points about separating threads Technophobe.. you might want to comment in the Development Thread

Bob C

I've only just read this thread. I don't always look at all sections of the forum (in fact I never look at all sections and rarely at more than two or three, ie: Living on the spectrum, the one about diagnosis and assessment, and sometimes General chat and/or the one about hobbies/interests).  This thread was only started on Tuesday and right now it's Thursday.  I don't think it's reasonable to interpret as evidence of lack of support, the fact that there were few immediate responses - more likely that not many people had even read the original post.  That's how it has been for me anyway.

I hope you don't leave this forum. You make some excellent contributions.  I don't see the forum in such a negative way as you and, apparently, others. I don't see what's wrong with it or why some complain about it being very unsupportive. The main problem as far as I see it is that it has too few contributing members. So please don't give up Codger, this forum needs you!

I would agree that some way of separating more clearly threads about children's issues from adult issues would improve the forum's user-friendliness.

Hi

Electra: Thanks for pointing out my error in including text from your post and ascribing it to CC. I had meant to attribute it to you .. I have deleted it now. I apologise.

Recombinantsocks: Thanks for such a thoughtful contribution. I read and try to learn (as an NT) from you guys and from my autistic colleagues here in the office.

Classic C: Please do communicate your thoughts about the community or the NAS. Either here or you can email me via communitymanager@nas.org.uk Regarding a seperate forum for adults.. if there is demand for that and you, and others, think the NAS can play a role .. then lets explore that. I'll start a thread in the "Community Development" area"

Bob: Digital Services Manager

This forum is a strange beast. In some ways it is like a field hospital on a bad day with more incoming distressed souls than we can deal with. I consciously ration my time on here because otherwise it would turn into an obsession and the rest of my life would suffer. Sometimes I see posts that would suggest that things should be getting resolved and I don't feel the need to add another 'me too' post. I'm sorry if this has contributed to you feeling abandoned CC. The forum works best when there are a variety of views and as I have said before, we need to be given some allowance for our lack of tact and diplomacy at times.

In this case, Sophie apologised and retracted her complaints against you just leaving a small reproach to you for using the word ignoramus.

I can see that it has thrown you into more of a wobble than is healthy. Tell yourself that it is only a forum and that occasionally things will get said that you don't agree with, go for a walk, let off some steam but try not to let it ruin your day. I hope you have other people to talk with in your life that can help talk through issues. I sense that you have more need for this at the moment to bring you back into orbit?

There is a point of view that some have that people with AS don't need treatment. We certainly can't be cured of the autism but we can learn to deal with it better by understanding how it works and what the implications are. My life has changed because I am now aware of my difference, I try and conduct myself differently and have managed to reduce the conflict and misunderstandings in my life. I make a big distinction between learning how to deal with the world vs trying to erase the autism. Non autistics should be able to deal with us better too but I think that task is actually too difficult so I don't lose sleep over the fact that they treat us ignorantly - everyone knows a tiny fraction of what can be known otherwise we would all be brain surgeons and particle physicists and actors and writers at the same time.

Electra, you're a star. TrueColours and Random, I especially appreciate your putting in a word when you're in the wrong place to start with, because now you've told me, I can appreciate the exceptional effort it took to post at all, and I feel humbled that you have done so. I cannot begin to tell you how much more meaningful your support is to me, knowing what it has taken out of you to give it.

I am currently composing a suitable reply to Bob. The sheer bullying stupidity of this situation is entirely down to the NAS, and whether they are prepared to listen or not, they're going to hear it. Electra's point about 'the gay community is entirely accurate and apropriate, and we must stand together if we are going to be the change that's needed.

I felt so alone and unsupported that I thought 'well, I'll just go and try to be some use somewhere else instead then'. Now that you have shown me I'm not, I shall have to think again, so I won't do anything precipitate in the meantime.

Thank you so very much for making the enormous effort to be supportive, I can only answer by making the enormous effort to hang on a while.

Bob C-Mod - you have ascribed comments in my post to Classic Codger.

And I take your point that prejudices should not go unchallenged. However I don't think autistic people coping unsupported with the stresses of daily life (and a world that contains a constant tide of images and articles undermining a positive self image) should be the ones to do that unaided.

My vote would go for a separate forum area for those AS people that want it. The ones who see no need for it can participate here and some might choose to be active in both areas. I'm disturbed that the NAS does not recognise that we need a safe space to support each other, doesn't see the hard reality of life for autistic adults coping in a neurotypical world and even feels threatened by our wish for a separate space.

If you want us to act as some kind of sanity check here then we are more likely to do that if we have a safe space to retreat to when it all gets too much and we've answered one query too many about children that freak out when having a haircut. Let the poor kid have long hair already!

Hi classic codger, I hope you decide to stay, I really value your posts and comments you have made.

I do feel guilty not replying to your plea of help, but like others on the I have been struggling with my personal life. I did start to write a reply when I first discovered your post a couple of days ago in the early hours of the morning. I have just been so exhausted with everything.

I am also having difficulty with my own thought on the original subject, and started to express them in my reply. But was concerned this may have upset you or others reading the post, it just got a bit too much for me to deal with.

I apologise for that, but want to let you know I really wanted to post, but was concerned it would make things harder for you or others reading my thoughts on the matter. It something I feel I need to "process" myself before discussing it openly

From your post .. "For this to be a community we should have a safe space to log on where we don't have to see research posts or posts from parents apalled that their child is like us. We should have space to support each other" 

Hi Classic Codger

I am really sorry that you feel this Community is not meeting your needs as an adult with autism. I agree there are inherent tensions in providing a common forum for both parents and adults with autism.

We tried to address this by providing seperate discussion areas including "Living with Autism" for adults on the spectrum and "Parent and Carers". This still allows, however, members to read and respond to each others posts in all areas. Clearly this is sometimes proving difficult for both types of user. 

Choosing to only read and participate in the relevant section is an option but clearly hard to maintain when issues you are interested in or feel passionate about are being discussed elsewhere.

I still believe there is value in a broad community. By splitting off discussion the danger is that prejudices, for example, may go unchallenged. Never the less I can see that reading these repeatedly could cause distress to someone with personal experience.

Never the less I think it's important for us (the Community Team and NAS) to listen to the points being raised and to reflect on the direction of the community.

I hope you stay and continue to contribute .. but not if it causes you such distress. Other members, be they few, have responded to you with compassion so you are not alone.

Best Wishes whatever you decide.

Bob Mod

I'm glad if what I said helped. I was cross that you'd been made so distressed.

I'm sorry you're leaving but this is not a healthy place for autistic adults to be. NAS call it a community but thats very far from the truth. As far a i can tell the posters fall into one of several groups

1  Yet another student wanting to mine our life experiences to help them get a qualification

2  Parents in a panic after problems with an autistic child or problems with the medical profession

3  Younger people seeking autistic friends - these quickly leave as this isn't a supportive place

4  Older autistic people who offer advice and support where they can.

For this to be a community we should have a safe space to log on where we don't have to see research posts or posts from parents apalled that their child is like us. We should have space to support each other.

For all of us our daily life is hard, sometimes almost unbearable and not because we're autistic but because the world is not set up for us. This is one place that should be set up for us, should be safe for us. NAS should not be using us as sources of support for NT people when we have so little support ourselves. Its first duty should be to us or it should drop the National out of its name.

Thanks Electra, you've saved me. This business threw me into a complete wobble. I only found the Mod's post yesterday, I twisted and turned it, tried to look at it all ways, and couldn't make any sense of it at all.

And a big thank you to everyone else who've said nothing when I reached out in my distress. Your support is totaly underwhleming.

I'm wasting my time here, obviously. I am 95% of the way to removing myself from the website, and to those of you who shout 'hurrah!', go and have a look at yourself.

I feel your pain classic codger (and they say we have no empathy!)

Its fine for NTs to want to cure us, change us or even stop us being born at all but we have to be very careful what we say in reply. Their implied message is deeply insulting and damaging to those of us proud to be autistic. Thirty years ago they spoke about gay people in those terms and now we are all rightly appalled by that. I hope in another thirty years (less would be good) our kind will be shown the same respect and acceptance.

Electra

Be more cat

I can certainly see both sides here.  Personally, I'm a great fan of satire and parody used to highlight hypocrisy and abuses of power etc. (big Chris Morris fan), and the intent of the post was clear enough to me.

However, I think it wise to remember that this forum is used by people with a wide range of autistic spectrum conditions, some of whom may find it particularly difficult to distinguish what is meant literally, and what is meant as satire/parody/sarcasm etc. (much as I loathe their "ugliness", emoticons can be a very useful tool to avoid such ambiguities - I did not see the original post, so don't know if the text was 'flagged' in this way)

So, I can sympathise with Sofie's position too, and I do feel that it is wise to be cautious with such things if there is a chance that remarks might be taken out of context by other forum members.  Having been a forum moderator myself in the past (not on this site), I have seen how quickly such misunderstandings can degenerate into a "flame war" even though neither side initially intended any hurt - especially for new members who have not yet "got to know you" through your previous valued contributions to the forum.

Hi classic codger,

The moderated post you have included is something that I've moderated. Firstly, I want to aplogise for the fact that I have misinterpreted the meaning of your post. For this I'm sorry and completlely understand your frustration. I would ask that you cut me some slack as I am obviously going to make errors sometimes, I'm just a voulnteer who wants to help people on the spectrum. There's no need to describe me as an 'ignoramus' as this is simply not the case, this is just an example of misunderstanding a post so hopefully we can move on from this.

Thanks,

Sofie Mod