AS people, please can you help me?

Hi Technophobe,

Yes, I have been reading this and thank you very much for kind thoughts. I'm fortunate to have a good caring family around me and am coping as best I can.

Hi Technophobe,

His wife is probably reading the thread that I included the link for. People are adding messages of condolence there.

recombinantsocks said:

Hi All,

Classic Codger's wife has posted to inform us of the sad death of CC. Please see the thread on community.autism.org.uk/.../those-who-know-classic-codger

Regards

Sox

I'm very sorry to hear this news Recom. I've not been on here for ages because I felt I had little to contribute, but I was alerted via email.  If CC's wife is reading this, I hope you're coping OK and have plenty of support from family and friends.

and, following a response I have received from Longman, I would add an appeal to anyone who has been posting elsewhere.

The forum can thrive with the variety of views, that CC and others put forward. The forum is a lesser place when there is less debate. I'm sure he would have leapt into the fray with the current thread community.autism.org.uk/.../autistics-having-children which is an opportunity to address (in a calm and grown up manner please!!!) the exact issue (elimination of autism) which so incensed CC.

Hi All,

Classic Codger's wife has posted to inform us of the sad death of CC. Please see the thread on community.autism.org.uk/.../those-who-know-classic-codger

Regards

Sox

Avi Moderator said:

Hi Everyone,

Hope you are all well.

We’ve had a lot of feedback regarding creating a separate area for autistic adults mostly on the thread ‘separate forum/community for autistic adults?’. The general consensus is that this is a good idea and would provide a more focused area for self-expression for adults within wider rules.

We were thinking of using our existing ‘Living with autism area’ for this and renaming it to something like ‘Adults on the autism spectrum – Discussion and peer support for adults on the spectrum’.

What do you think about this? We were going to give this a go on Monday.

Take care,

 

Avi 

OK, why not?

 I'm in favour of this and the suggested renaming.

You need to read the Annual Report for year ending 31 March 2015. It is accessible but takes a bit of finding.

Mark Lever, the Chief Executive, in a foreword begins "This year was the first in the National Autistic Society's new five year strategy to help everyone on the autistic spectrum lead the life they choose". Ah ... new, only just started.

However reading the report there are scarce any mentions of adults, and it is mostly clear they refer to adults in care or receiving substantial intervention - fair enough - they do need every help that can be obtained. Able adults fending for themselves don't exist.

Moreover the Online Community, as you have spotted, seems to assume that the help is given by parents. We are just a nuisance. We don't count. We won't be missed.

I think we just have to get the message, NAS isn't about helping us, in any way shape or form. The way we've been treated in the last three months is clear proof of that.

If you get over autism and manage to cope in the big wide world you've been cured. Another success story for NAS. But that's all there is to it.

There is truth in what you say True Colors. But if they call themselves the National Autistic Society then thery have a duty to represent all of us.

NAS seem to want to use the forums to support and advise parents and carers without spending any money to do so. No one from the NAS will actually state the intended purpose of these boards beyond saying they are a community - which some of us would dispute. This uncertainty would not matter if the moderation was more hands-off but if there is tight moderation then everyone must be clear what the rules are and what the boards are for.

I wonder whether the fundamental problem with the moderators on this board is that they are dealing with people like us - who are older and proof that things don't necessarily get easier as the years oass - and parents of aitistic children who want to believe that wiuth love, care and help their children will be able to live a 'normal' life. Looking at the NAS magazine it's obvious that they are mainly concerned with the latter, which is understandable since it was parents who were behind the setting up of the NAS.

longman said:

You forget, R'socks, some of the Moderators are on the autistic spectrum.

On the contrary, I expect some/most/all? of the moderators are on the spectrum. This would lead to difficulties in applying the nuances of when to apply a rule and when to stand back. It would lead to difficulties in detecting and responding appropriately to emotions and in not being accomplished and diplomatic in dealing with angry and emotional members.

In either case, we shouldn't make ourselves angry because someone else fails to meet our expectations. We have high expectations and exacting standards and are unforgiving of ourselves and others when those standards aren't met. I was given a book on anger management a few years ago (pre-dx) because I had turned into Victor Meldrew. The one lesson from that book was that anger only hurts the person who is angry. Anger has very little benefit to anyone unless it serves to drive you to some (peacable!) action that resolves the problem.

One of the issues that we are raising is that perhaps there has not been sufficient autism training amongst the moderators. It is not their fault and, if nobody has raised this before, then we should not be surprised at this turn of events.

When Mat Bucks posted his excellent synthesis of events at noon last Friday (one page back now), I happened to notice the number of guests. It hit something like 1700, and when I looked a little later it was over 3,500.

The doubling may merely suggest a glitch in the system, it cannot count over 1000.

But normally guest numbers peak at around 400. Something happened on Friday, even if not such large numbers, which suggests to me lots of people know and care about what is happening here.

All true Longman and perhaps its worth saying again that there is no such thing as 'mild' autism, just a greater ability to mask and look 'normal'.

I appreciate the thought that went into the manifesto and the depth of feeling but its just one's person's take on being autistic. Myself I don't have a condition. I am autistic, I'm autistic from my head to my toes, from my bones to my skin and from the womb to the grave. A condition is an add-on, a thing you could take away and leave a person who is not autistic. That is not how it is and I'm glad about that.

Unless the Mods tell us their vision for the future of the forum and what they consider its purpose to be then there can be no way forward.

You forget, R'socks, some of the Moderators are on the autistic spectrum.

You would think that would be enough to avoid the problems we have been seeing.

That is to say if they are representative of others on the spectrum and are giving the other moderators the right kind of experiential feedback.

On the whole we (the more active ones) are at the abler end of the spectrum. That bias arises because often those with more marked autism may find the forum more intimidating, or harder to use eg comorbid dyslexia, or difficulty constructing clear sentences. As a result there are mostly abler adults taking part.

It may be that the Moderators on the spectrum have more severe problems than we have. It may be perceived by NT Moderators that our difficulties don't compare (which is a common misunderstanding about autism traits - abler isn't necessarily problem free).

I should hope the moderators are autism trained, but I suspect it goes no further than the Triad, and the training doesn't recognise able aspergers/autism as having any real disability.

In short they seem to think of us as a lot of moaning miseries, and perhaps that the autistic moderators need more support and protection than we do.

Incidentally can I recommend people to respond to R'socks' manifesto on the ideas and discussion section. I think that is an important opportunity.

longman said:

I'm also glad Recombinantsocks is around to give a balanced view and attempt appeasement with the moderators. There is no point in being destructive in our reactions. The forum is (was) a valuable resource, and as Kolojaro has explained it is a lifeline and a guide to living with autism.

Appeasement is definitely not my goal! I am not Mr Chamberlain and Bob et al are not ***! Seriously though, we absolutely must not simply forgive and forget. We have to forgive but not forget as I really don't want this whole thing to come round again like groundhog day.

I am trying to work out why this is gone so horribly wrong and what can be changed to improve the situation. The status quo is not viable but I think that the situation is not beyond retrieval. 

I think we need more sensitive moderation that fully accounts for the special nature of the forum visitors. Moderators need special autism training and negotiation skills before being let loose here. The moderators should also have easy access to advisers who can introduce more professional help when we struggle to make headway with problems where our lay knowledge falls short of answering people's needs.

As you may be aware I did try to circumvent the collapse that has now occurred by writing to the Director of NAS. I think honestly I wasted my time. It got a very speedy reply exonerating the moderators. I think this is an appropriate time to state what I said and what I got back.

My complaint was almost identical to what I wrote after I had been put on pre-moderation, reproduced by Kolojaro, but never reinstated after the suspension was lifted. I started with the things said in that magazine article, and rather than reiterate that, I'll focus on the gist of my written complaint:

"What is actually happening is any wrong word, or negative comment now gets public reprimand. OK Bob insists it is not a reprimand but information and timely intervention. The rules actually say we will get a communication in private in the first instance. In a forum involving often people on the spectrum there may be inappropriate use of language but this policing is petty, like a teacher telling off naughty pupils. And it scares people off. We keep losing members. Everyone is uptight about this and it keeps flaring up as postings on this interference, with a consequent clamp down by Bob Chase and his team. I don't see what this has to do with supporting people on the autistic spectrum.

"What we mostly get on the forum is not peer discussion of topical subject matter. the forum is inundated with people in desperation, who seem to come onto the forum as a last resort. People unable to get diagnoses, school statements, PIP etc for themselves or their children, people coping with young adults or children with severe behavioural problems, all kinds of postings from people in utter desperation.

"All the moderators do is refer people to the website or Help Line, when it is obvious these are not preventing the forum being swamped. It then puts pressure on the forum members to try to help if we can. But we aren't trained counsellors. We don't get stress counselling.  We try to help but if we put a step wrong or say something deemed negative, along come the moderatrors or increasingly Bob Chase with a public reprimand. If we are deemed challenging our posts are held up for review.

"This is clear cut bullying. The forum is there to help people by peer support. The way the Mods and Bob Chase intervene all the time is very humiliating and degrading".

I followed this with an expression of my growing personal distrust of NAS. I asked that the whole of the recent thread be read in conjunction.

The complaint was passed to a middleman, no job role given, could have been the janitor. The gist of his reply Tuesday 9th February, in relation to the above paragraphs, was:

Part of the value of this Community is that it does represent a diversity of views, sometimes robustly expressed. Running an online community of this nature in a way that everyone feels able to contribute is never likely to be staightforward, given the range of views, opinions and communication styles. You are absolutely right to highlight the value around dignity and fairness, which we need to apply to everybody and which we ask our Community users to observe in respect of everybody else. This means, while we welcome criticism - about the NAS or anything else - and differences of opinion, we do not welcome posts that make negative personal references to specific individuals, including staff members, moderators or other members of the community and I make no apology for that. Having reviewed this thread, I believe that Bob's and the moderators' interventions were always in line with this principle. Whenever possible, we do forewarn people about moderation or going into pre-moderation and I agree that we should make more effort to ensure this happens in the future, except in exceptional circumstances"

The rest was about my suspension and doubts. I was suspended merely because I described the moderation as school ma'amish. I didn't make tose remarks about an individual. That was enough to justify pre-moderation lasting four days.

This forum ran successfully for five years without anything like this arising. In three months it has turned into a nightmare. I don't see this position, representing the Director of NAS, being any sign of any relaxation of the current obsessive OTT moderation strategy.

If people try to restart the forum they need to appreciate that things may well continue to be stressful.

I fully understand your position Technophobe23. There is history to all this, and if you've joined up since or were not party to the difficult threads, this must all seem very strange.

I also think that if there are enough people like yourself around the forum may be able to start up again and maybe bring people back who feel at the moment they have to leave.

I'm also glad Recombinantsocks is around to give a balanced view and attempt appeasement with the moderators. There is no point in being destructive in our reactions. The forum is (was) a valuable resource, and as Kolojaro has explained it is a lifeline and a guide to living with autism.

The current problem is a break down in trust. Twice bitten, November and now, many of us old guard have had enough. It doesn't stop others trying to rebuild.

My worry is that it wont be long before there's more heavy handed moderation. I really cannot see any evidence that Bob is going to stop this style of moderating. Five years we managed without this kind of intervention - moderation was always discrete. Three months we have had of what I regard as appallingly draconian over-reaction to the most trivial offences - low level swearwords that everyone uses in text like figures of speech being publically reprimanded. This is no way to run a forum.

missdmeena said:

Hi Technophobe,

In response to your PPS to me. I haven't got any "inside information", you can get messaged by email when someone else adds to a thread you've subscribe to. In this case KaloJaro had received notification of these posts and saw that they weren't on the main forum and in light of the previous issues with moderation, took the brave step to post them (via cut and paste) on their behalf.

I note that there haven't been any recent posts from KaloJaro - are you alive and kicking or have you suffered the same fate as those you have valiantly supported?

Thanks Missd - I did see that post but I couldn't figure it out and gave up trying half way through. That post must have been the key which would have unlocked the whole confusion for me!

Ignorance is my defence. I haven't the vaguest idea what went on back in November. I didn't join this frum until December and thought, in my innocence, that I'd found a great place to exchange thoughts etc.

I can only guess that whatever happened in November makes sense of this weird thread, because it certainly makes very little sense to me. I can grasp some basic reasons for disaffection, but without being able to see it in its historical context, it is impossible to understand the depth of anger, distrust and near-loathing it seems to have stirred up.

My selfish hope is that it blows over and setlles down, so that it returns to / becomes the forum I hoped it was.

Actions speak louder than words Longman.

So far I see no actions that will ensure the security adults on the spectrum need to be reassured that this is a safe place.

Bob C- how are we supposed to understand that silence means you care? At which point was it emphasised when people were being censored that the Mods felt our pain and were dealing with the issue in a way that could somehow remotely benefit the community?

I've skimmed through the latest 'new' topics... without the other veterens who have now been driven to despair, your 'community' is looking more like a series of one off statements of how the Government and NAS has failed to address the needs of those with ASD as well as their family/friends.

Right now I find myself torn because while I do dearly wish to keep in contact with the others leaving I frankly don't trust any of the moderators to not use my contact details fairly in a non-bias manner.

A pat on the head and a 'well done you are important' to the core members of this forum is not only pathetic but insulting. Much in the same way as one might send flowers to a person they've run over in a car.

Metaphor: 'Sorry you walked in front of my car while I was speeding through a red light, don't do it again'.