I'm sorry, I have failed to explain myself properly.
Longman and Classic Codger have been grievously distressed by the events on this thread. I have not tried to minimise or dismiss their experience because of their autism. I have tried to explain why their distress has been so great when others have failed to understand. The mods failed to fully understand how people with autism react to events. In my opinion, some of the posters have failed to undestand their effect on other people. Nobody is guilty of anything, in my eyes, but people on both sides have been hurt.
My own personal way of dealing with autism is to try and understand
a) what effect the world has on me, how I react to what other people do
b) what impact I have on other people, how my behaviour leads to other peoples reactions.
If I can understand myself and can understand the interaction between me and the people around me then I have a choice.
I can either use that knowledge to change my behaviour or anticpate my reactions or other people's reactions.
Or
i can blithely carry on as I did before.
I choose the first option but I am aware that I only have this choice if I have studied how I interact with the people around me.
Why should we be the ones to constantly worry about how our actions affect others?
Yes people should be a little courteous to some extent but the actions of the mods as well as most NTs on the planet seem to be the personification of 'speaking before you can think'.
There are feelings involved here Sox, something I don't think you or mods comprehend appropriately.
Feeling rejected HURTS.
The over-moderation of this forum has lead to LONG TERM physical and mental pain.
It has DRIVEN AWAY vulnerable people who need to know there are others like them.
I was told once by a therapist that you CAN'T try to distinguish the autism from 'you'. It all feeds into each other because you are ONE ENTITY.
Yes you can identify TRAITS of autism in others but passing it off as 'its just autism' is demeaning and highly offensive to the individual, as though dismissing their thoughts and feelings JUST BECAUSE THEY'RE AUTISTIC.
That is the vibe I now get from this forum.
When we talk, we're ignored at best. When we yell, we're turned on and viciously punished for daring to try and make ourselves heard.
Autism 101: Those on the spectrum act out when others do not make the effort to understand them, or get on their level to explain.
Strong words are needed as otherwise THE MODS JUST DON'T SEEM TO GET THE POINT. I don't give a damn if it sounds aggressive or patronising WELCOME TO OUR WORLD.
Many adults on the spectrum have had to deal with this sort of behaviour for YEARS if not decades so forgive me for not having the slightest bit of sympathy for the actions of people WORKING for an organisation supposedly dedicated to the UNDERSTANDING OF AUTISM.
No Longman, I don't think you are being petty. If you were petty and childish then you would deserve to be put on the naughty step. No, I think that you are behaving understandably given that we are on the spectrum. It would be wrong of me to be judgemental about your behaviour so I choose to try and reason and reflect back to you so that you can understand why people get upset when, for example, you use terms like vile and vindictive when, from their point of view it just makes no sense. Sometimes we are baffling and bewildering to onlookers and people we come into contact with. I speak from my own experience of being criticised for being negative, judgemental, picky, pedantic, argumentative etc etc. I have learned to moderate my language and worry more about how my words strike other people. It doesn't come easily to me but I think I have learnt new tricks despite being an old dog.
It fits the textbook description and I've spieled out that advice to parents about their children struggling to process experiences that build up to meltdowns.
I'm not nursing a grievance at all. My problem is that I put in a lot of work at the end of November to resuscitate the forum, as did others. I created new topics. I answered lots of threads I might not otherwise have got involved in.
I now worry that I put everybody through it all again just to land everyone in a worse mess. The last thing I want to do though is wreck the forum just because I'm having a sulk about what happened to me personally. I feel very anxious about all those whose lives revolve around this forum and find it a lifeline.
I'm sorry you have the view of me that I'm just being petty.
OK accusing the moderation of being a vile attack won't stand up in court but you need to look at the evidence all the same. I'm not going over it again. Have a serious look at what was done to myself and Classic Codger in this thread. We were silenced by the mods. People only got to know because the email notifications were cut and pasted into the dialogue. That may well have inflamed people's reactions. I cannot see any attempt by the Mods to put people's minds at rest.
Late last night I posted the gist of my letter to the Director and the gist of a reply from someone who didn't give his position, and for all I know was a chum of Bob's. I doubt very much that it got anywhere near the Director. I cannot find the post now,. Maybe that too has been deleted.
I'm not into conspiracy theories. But I thinjk you need to detach yourself a bit more from trying to explain everything as the result of the inherent defects of people on the autistic spectrum. There is some sort of "us and them" game being played out here.
KaloJaro: your existence is not wrong - I would be interested in your thoughts on my manifesto post today - do you think those ideas are positive thoughts about how to live with autism?
Longman: I find your post paradoxical but understandable.
You repeat your assertion that their actions are vindictive and vile. In my mind this implies that you believe that they did what they did with malice aforethought. i.e. That they conceived a plan to attack you and followed it through. A court, investigating a crime, would consider intent as well as the actual actions before determining a judgement. Judges reserve such severe reproof or criticism for those that set out to commit heinous crimes and then commit their actions in full knowledge of the damage that they are doing to the victims. I do not believe that the moderators actions fall into this category of premeditated actions.
I do not want this epsiode to be forgiven and forgotten. To err is human, to forgive is divine but we should not forget the battles fought and the fallen and injured "lest we forget". We/they have to learn lessons from the battles fought. I don't think anybody involved will forget this easily. We should not forget this easily.
I sense that you are bewildered and outraged by the alleged transgression and the punishment meted out. You simply don't understand the cause and effect and are unable to make sense of it. Most people would shrug it off, not be stressed by the experience and move on. An autistic person, on the other hand, is likely to react in a disproportionate manner and be traumatised by the reactions of the authorities. Does that analysis fit this situation or am I way off target?
I agree with Longman, this isn't about being rational, this is entirely about emotions and feeling safe.
How can someone be expected to constantly be rational when the other side of the argument is irrational and refuses to explain their actions?
I got diagnosed just shy of my 18th birthday with Aspergers. My whole life, its always been -my- fault that I reacted 'wrong'. It's -my- fault that 'I got my feelings hurt'. The attitude of the mods is that it's -our- fault for being upset and insinuating that we 'got our feelings hurt for no valid reason'.
But it's ok, they'll forgive us as long as we realise we're wrong (we're not) and do as we're told (why should we?)
I constantly feel that because I am an adult there are no services available to help me. They've all been cut. There's nothing out there to supply regular reassurance to solely adults, its just hoards of parents with autistic children picking us apart for help with their kids or to make themselves feel better. And the second we do something not NT we're persecuted and shunned for it.
I used to come on this forum to read responses by Longman, CC and others to be reassured I wasn't the only one thinking the way I thought, that my existance wasn't 'wrong'. Currently if you're not a savant with exceptional talents or are moderately capable of making a sandwich unsupervised you are left to fend for yourself with endless unrealistic expectations.
This was supposed to be a safe place from the NT world, now it isn't safe anymore. I feel like I've been evicted from my home with no warning and nowhere to go.
We forgave once, we didn't forget. To repeat the same actions and expect a different outcome is insanity.
Dear Recombinantsocks,
You really have been a solid rock of reasonableness and rationality in all this. I don't take any of it as a criticism. I think you've done exactly the right thing all the way through this, providing the voice of reason.
I'm not being malignant, or vengeful towards the Moderators. It isn't about castigation. I just think the one reality you have to face here is that the moderation was vastly in excess of anything I've ever encountered on any of a number of forums I've been on. Forums work with discrete moderation.
This forum ran though all kinds of upsets for five years; it has only gone wrong since the new moderation was introduced in the past three months.
I don't think you can safely argue that suspending people for four days (and it was in effect suspension, not delayed moderation as they try to make us believe - posts weren't held up they were destroyed) - just because they chose to interpret what was said, by quite a stretch of the imagination, caused a complaint.
The moderation lately experience, public shaming and suspension without warning for trivial incidents, was without doubt vindictive and vile. Please don't try to excuse it.
The problem now isn't about forgiveness and lets just roll our sleeves up and get on with the forum again. This latest episode has scared people. The atmosphere created is poisonous. It has made people feel ill. It shows no regard for people on the autistic spectrum (nor the slightest comprehension of adult autism), for whom the forum was, at least in part set up.
I could set about answering lots of posts and and creating new ones, and gingering up the forum, but not on my own. others have to follow. And I'm really not sure it would be right to do so.
What has happened isn't about the Mods just making a mistake, or me being forgiving (and why is it just down to me?). This isn't about the Mods learning from this and changing (when they didn't last time). Trust has broken down completely.
People are afraid to post now, for fear of public criticism. That young adult who posted a few weeks ago and got told off for breaking rules that aren't there. He hasn't come back. People who witnessed this recent episode have had enough, I am certain of that.
Suggesting I try to make up and ginger things along a bit isn't the answer this time around.
I'm afraid the Mods have to accept that the moderation tactics this time totally killed this online community.
But please other people say what you think of R'socks suggestion. Do we just forgive and forget yet again? Is that a sufficient solution for those now affected?
Dear Longman,
I appealed to the mods to let you and CC et al back in on Tuesday ( http://community.autism.org.uk/discussions/general-discussions/general-chat/people-please-can-you-help-me?page=3#comment-37906 ) because there is a wealth of experience and knowledge that you all bring to the discussions. You have challenged me on issues and we have differences of opinion on things but this would be a dull place without you all.
It seems to me that the moderators do not deserve the castigation that they are receiving. They have made mistakes and they do not have the expertese to deal with all of the issues that arise but I do not think that accusing them of being vindictive is fair on them. They are only human and I suspect that they are liable to take this personally and it is likely to ruin their day in the same way that your day was ruined by being suspended.
Please don't treat this as a rebuke or a criticism, I have no doubt about how this forum is impacting you and have absolutely no desire to add to your woes. Please accept it, in the spirit intended, as a nudge from a friend, who does not think ill of you, to give a bit more thought to the people on the receiving end of some of this.
Sox
Well observed Electra. I was more than happy to give the help to others, though, wherever i could. It was when the Mods started nitpicking how we did it that got me so annoyed.
They want us to provide a free service, they wont support us to do it, or give us any means to support each other .....but let slip any questionnable word and they pounce.
I meant to draw attention to posting 54 from Bob on 30th November:
"We prefer pre-moderation where posts can be made but must be approved by mods. This lasts until we believe that the member stays within the rules. Again this is used very rarely"
My recent pre-moderation lasted four days and had to be lifted, as I was told when it came to it. It was applied without warning after I tried to explain that the moderation was unfair. Though it is claimed I deeply offended someone no-one will say how.
The Moderation in here has got worse and worse, more intrusive, more irrational, more vindictive.
Which is why the NAS may be waiting a long time for any spark of recovery in this on-line community. Nobody trusts NAS any more.
Looking back I can see that the Mods began dialogue and asking for comments last November. This same thing has happened again very recently in reponse to recent troubles.
But the requests for comments and thoughts give no clear review or decision making process, thus its not clear what is up for change and what is not, where the bottom line is and who decides where it is. It adds up to a lack of transparency.
Autistic people value process and logic more than the general population, indeed for some of us its essential if we are to make sense of a situation. Its unfair to ask for comments and thoughts, some of which may take a long time to write, if there is no visible process of change for these to feed in to. It encourages a feeling of ownership which is not ours to have
I can also see no appreciation of how stressful and debilitating it is to come here and be unable to avoid seeing the constant pleas for help with surveys and the stream of requests for help from distressed parents. Some of us may want to help with these sometimes but we should have a choice about whether we see them. We aren't a free resource to offset cuts to the helpline.
I think we need to bring this earlier thread back to the font, if only because people observing what is currently happening may be puzzled about references to the November debacle. Within the body of this thread lies much of the previous distress about moderation.
The problems start about the second page. Because of public shaming by the Moderators on several other threads a number of us came together on this thread as a means of discussing amongst ourselves what had happened.
Promises made by the moderators at the time were never kept. On the assumption they would be, a few people made a gargantuan effort to resuscitate the forum. With hindsight it should have been left to die. Things are now ten times worse.
But I cannot see anyone resuscitating the community this time.
Hallo Sox
On the point about "off forum" communication. We do use direct email for this sort of communication for the reasons you have mentioned. Never the less it is a good point and I agree we should keep "criticism "off the forum". In fact we very rarely suspend members .. we prefer " pre-moderation" where posts can be made but must be approved by mods. This lasts until we believe the member stays within the rules. Again this is used very rarely. You will appreciate that none of this is obviously happening to members.
I'll reply soon on the suggestions being made, which I think are very interesting.
It seems that mods are restricted in their access to communicate off-forum with contributors. It is a well established principle that criticism should normally be done privately to avoid shaming and to provide people with an opportunity to defend themselves against unfair criticism. Can the mods please route any future nudges or criticisms away from the forum?
Presumably any contentious posts can still be temporarily suppressed or accounts suspended pending any other actions?
Much obliged Recombinantsocks and Zitami for re-assurance. Recombinantsocks is doing as much if not more to put new people at ease. Zitami's way of looking at trying to give experiential help that other autistic people can relate to is a good one.
Both of you express the need for more information on living with autism. I wonder though if NAS is able to give us that input.
We need to find outside research groups working in the right sectors and get their attention. That might mean individuals here writing to such research centres and saying - this is what I experience - have you any research interests that could consider this view of living with autism?
Perhaps some research centres would welcome the insight of people on the spectrum, as a means of relating research results to actual life experiences. This might then stimulate new research which NAS can present on the website or share with us through the forum.
I've lately read about research at the University of Warwick that might be useful to us. A Professor Feng there is modelling the brain from three-dimensional MRI scans that have identified some 20 examples of difference between autistic and non-autistic brains. In a paper published in "Brain" in March this year (Autism: reduced connectivity in cortical areas.....re facial expression, theory of mind and sense of self), they obtained data by scanning the brains of 523 individuals with autism and 452 non-autistic.
The conclusions are inevitably pitched at understanding theory of mind, but what interested me most was the work on facial expression. Differences in temporal lobe visual cortex affect our use of facial expression, thus affecting social behaviour, emotion and social communication.
One of my own theories is that we just aren't processing other people's facial expressions properly and aren't generating the right facial expression, which is enough to deny us a lot of the information, both ways, in social intereaction.
Another discovery is a connectivity factor affecting spatial interaction with our environment, which I guess might explain why we have trouble with environments that don't bother non-autistics.
As I indicated, they are pooling these factors towards explaining Theory of Mind, which I guess is inevitable from a scientific perspective - but just the revelations about reading facial expression could be a breakthough in itself, and help get a better understanding of the way people's lives are affected by this.
Somehow I think we have to deflect researchers from just explaining autism theory to coming up with nearer term solutions to living everyday with autism
Longman, I do find it helpful to hear an autistic perspective on things. What tends to come across is some level of understanding of how we are affected and how our traits impact on real life situations. Feeling understood, and that there is some explanation for why certain things are so difficult, is comforting in itself and helps to deal with some of the frustration that builds up when life just doesn't seem to match up to my expectations of where I think I should be.
In so far as giving advice is concerned, you are not setting out your stall as an expert, people are free to take it or ignore it as they see fit. You are merely making suggestions of things that have been helpful in your experience with good motives. I don't think there is anything wrong with this, especially in situations where there is usually not one 'right answer', even from the professionals.
I do agree that it would be useful to have some more in-depth information on the website about how things like more subtle social differences, anxiety, executive function and sensory issues etc. play out in real life, with input from autistic people (if such information is there, I have not been able to find it).
Hi Longman,
I hope that this thread has made a difference to NAS - the input from Bob shows that some real listening is taking place. Probably more reaction from NAS than any other thread I have read here in the last 18 months.
The feelings that you have expressed about the way that NAS have treated the forum has lead to a much greater understanding of its true role in the front line of diagnosis and treatment. Others have spoken out about their perception and the stand you have taken has, I think, resulted in some movement. The discussion has covered a lot of ground and I for one have a much deeper appreciation of what the forum currently does and what it could do. It certainly isn't perfect but I think that the discussion has clarified and crystallised some of the very real issues that need to be resolved. You should take a lot of credit for bringing this discussion to a head.
KaloJaro's contribution shows that your knowledge and contributions really are valued. Nobody is as widely read and experienced, on the forum, as you.
I think your post above and the reference to being punch drunk shows that it is taking a toll. No-one can fix all of these problems on their own. We can only do our best and try and improve and refine what we advise but there is no point letting it getting to you. Sometimes you really do have to look after number one - I'm aware of the irony of that advice on an autism forum when it sometimes makes more sense to say "it isn't all about you!" - something that has been said to me a few times.
Take care,
Sox
Am most grateful to KaloJaro for the supportive endorsement, much needed at the moment (and yes I do have some biases that slip in occasionally).
There are also very good suggestions here, particularly about providing a board for discussion topics, on current or stimulating themes,and the possibility of having expert input.
What has concerned me for a long time is whether any experts read the postings, or take up any themes for further investigation. Alas if indeed anyone is a position to change understanding of autism reads these posts, they don't seem to learn anything from them, and I suspect don't consider we have anything to offer them. Particularly it seems to me that people on the spectrum are considered not to have an opinion worth taking seriously - something not uncommon amongst professionals.
This in part is why I feel my efforts are inadequate. I'm still giving similar advice, though I think it improves with practice (perhaps....). Understanding of autism seems to stand still. The same questions are still being asked, and there are no new answers.
I've been accused on here (by Mods particularly) of being overly negative. Why cannot I give positive messages?
I guess part of my problem is I'm on here too often for my own good. As others have said in various ways, you get "punch drunk" on the same cries for help. We don't get stress counselling or any other kind of support, yet this forum has often been a last resort place for seeking reassurance or solutions, and we are all exposed to it, whether we try to answer of just read.
The notion that this forum is just a chat room where we talk about things like baking cup cakes (according to "Your Autism Magazine") is miles from the truth - this forum is in the front line of desperation.
The Mods keep saying information is on the website, and a few messages back, Bob_C Mod gave us a link to a blog by the help line about how the website is being improved.
Perhaps if more people consulted the website and commented here, it might help. I've just a few minutes ago had another try at using the website. It doesn't make sense to me. Links don't provide answers. Some video clips are YouTube only - ie not supported on this site. Lots of pages just aren't what they say they are. I don't think the website is much help at all. That may be me being overly negative and unhelpful, so perhaps other users of the forum could take a look to see if it is just me being awkward.
I'm still confronted by the Triad of Impairments being used all the time to explain life with autism. The Triad is a diagnostic tool. It looks for characteristics which cannot be confused with other conditions, like schizophrenia, hence for example it misses out hugely on sensory issues. The website only lightly touches on sensory issues, sensory overload and stress - even though these are common and critical issues for many.
NAS Mods will probably now tell me off for being too negative again. I think I'm trying to be positive. I'm positive improvements are needed, especially in the way the website conveys information, and the kinds of information it contains.
I cannot comment on the helpline. I haven't used it. I imagine the helpline team are stretched.
But the upshot is, many people seek this forum to resolve their problems. NAS is insensitive to treat this as just a chat room. Whether rightly or wrongly it has become something else altogether.
Longman, its good to see you. It upsets me that you feel as though your advice is of little value. For someone who isn't paid or an official volunteer of the NAS (on this forum) you are a fantastic source of insight into not only the thought processes of those of us on the spectrum but also of resources both those with and without ASD can access (which aren't otherwise easy to find via this website).
I consider you one of the veterens of this forum, and a great source of (mostly) non-bias wisdom tailored to individuals seeking advice.
Recombiantsocks, as always is the master of balance. I'm glad to see you still active as well, your ability to tone down any potential tensions in a debate and calmly present both sides of the arguement (in my opinion) makes you highly valuble to the forum in keeping debates rolling forward rather than dissolving into 'us vs them'.
Naturally the other 'veterans' (as I feel classifying people as 'oldies' or 'newbies' trivialises how vital long term contributors are to this forum), I'm happy to see you joining in the debate in your own ways.
Its this method of everyone coming together regardless of where they are on the spectrum (or related to it) that makes this forum so successful.
Personally I rarely post on the website as at times I often feel topics are directed at parents of those with ASD, trivial topics (such as baking) or are from people desperate for help when they've attempted to go through the other 'main' methods of seeking help (GPs for example).
I'd be more inclined to participate in discussions if there was a board where (as an example) a topic of debate were to be set up each week. Something not related to an individual, but perhaps an overarching subject such as 'How to improve the NAS forum'.
Where everything is so very personal its intimidating to try and offer support to others where I have only my own life experiences to draw on. In regards to the more negative threads (people desperate for help) these subjects can hit too close to home, meaning I am unable to engage as a result of my own feelings, or my feelings are so strong I feel I can't contribute anything meaningful asides from a rant.
Bob C- on the note of possible improvements, perhaps having some threads where a few professionals can offer advice would be more productive? For example, should you ask the community to submit questions/scenarios that often appear on the forum (issues with schools not offering the correct assistance for example), you could then ask a professional to offer their advice/opinion in an article response.
Not only does this ensure that someone professional is offering secure advice, it would also give other community members the chance to contribute or debate on the subject without fearing they're giving inadequate advice/anecdotes.
I worry that the veteren members in the forum are undervalued while simultaneously being taken for granted. I would urge the NAS to recognise their efforts (particularly that of Longman) and express gratitude appropriately. I would go so far as to say that without these veterans this forum would have died out long ago.
I lurk a fair bit on forums like this one. There are websites offering information on autism, but mostly it is quite 'surface level' and not particularly helpful in actually helping me live with the condition. I suppose I am looking for information that goes a little deeper and deals with the practicalities of daily life as well as just recognising some of my struggles in someone else so that I feel a connection and a bit less alone.
I seldom post (on any site, not just this one) for a combination of reasons. I might be feeling anxious about putting my thoughts on public display, about how others might react, or about being identified. I might feel I have nothing further of substance to add to the discussion. I might worry about saying the wrong thing or making a bad suggestion. I might struggle to put an idea into words at all, or summarise it in a brief forum post etc. Not an exhaustive list but generally there isn't anything sinister going on.
I do think there are some good ideas in this thread and am interested to see how it develops.
Thanks for those reflections RSocks.
The role of the moderators and "professional" advisors is very much on my mind as we begin reviewing the Community. Internally we are looking whether and how we could better link the Community our other advice services. This is in a context of growing demand for all types of advice over more and more channels, including Social Media where we are seeing particular growth in requests via FaceBook.
I'll also be looking at how we can involve Community members in such a review.
Regards
Bob: Digital Services Manager
