AS people, please can you help me?

Hi,

The points being raised in this thread are important and are being expressed very thoughtfully. They are not being ignored by me or the NAS. 

I'd like to politely suggest we move this discussion to the "Community Development area"  Where I hope we can ALL be involved in a discussion.

Feel free to start a new thread(s) here as a follow on

discussions/community-development-feedback/community-development. 

Thanks

Bob

How foolish? A couple of people have been puzzled by others  contributions as if they were expecting the behaviour of well mannered folk. I for one have been baffled, exasperated and confused by some of the turns that this thread has taken. It is a puzzle that needs to be solved.

Actually CC et al exhibit textbook autistic behaviour. They are genuinely confused by the NT behaviour of Bob. They are outraged at the idea of forced cures for their behaviour.  Well, what should we expect of each other here? We should expect everyone to be autistic and not be afraid to identify, and work with, the grain of that behaviour rather than cutting roughcut against the grain.

I came to the above conclusion whilst reading Neurotribes where I read of one of Asperger's patients who behaved in a frequently rational but extreme manner. The patient wished to abide by rules but was defiant of authority and was picked on by and argumentative with other patients. Such patients are baffling and hard to comprehend from the outside but respond well to be treating with patience and understanding. I recognise this behaviour in myself and others on the forum in greater or lesser extents.

Just as mention of the word asylum can be misunderstood, I am very clear that my application of this label to CC and others is not a criticism or an insult but actually it is a deeper recognition of the reasons why we are all gathered together in this place.

It is remarkable, actually, that we rarely identify and describe each others autistic outbursts. We have tried to deal with them as we would deal with a poster on a normal forum. I think we shoud be more open and become critical friends of each other. (Anyone who is unfamiliar with this term should follow the link)

I hope that Bob and everyone else concerned can see this as a way forward. CC et al do not benefit from the sin bin but need to be engaged in conversation. The doors and windows of their minds need to be thrown open so that they can see out and that they can also see what is inside the minds of other autistic people.

Please, Bob, let them back in. The forum needs moderation but it needs moderation that recognises and accommodates raw, unpolished autism.

We come here to understand ourselves and our autism. We need an environment that accepts that and does not unwittingly trample on autistic behaviour when it appears.

Your comments seem very well thought out Pentadactyl, I agree with virtually everything you've said. But please, don;t encourage the introduction of those hugely irritating 'emoticons'!  They really annoy me, and to find a forum free of them is a bit of a treat!  Actully, I've just noticed that a smiley thing is available in the menu bar along the top of the comment box - I'm glad it tends to be ignored.

After some consideration, I think it is unfair for the moderation staff to consider themselves the 'only' volunteers in the forums. Strictly, the moderation team is unable to voice an opinion or reply to topics (except where something is breaking the forum rules). Therefore, they are unable to reply in aid of conversation topics (i.e. give advice to those who consider themselves in need), and are also unable to generate forum content (i.e. maintain a forum community).

The forum users, especially the 'regulars', are (rightly or wrongly, whatever the view of moderation staff) freely giving up their time to review and respond to those for who they feel they have relvent advice or a relevent response.

Regarding overzelous moderation; my opninion here is that this is a fairly 'slow moving' forum, with topics generally taking place over the course of a day or more with relitively few, but in my opinion quite well though out and generally well meaning, responses. The problem with this, is that it is (in my view at least) relitively 'easy' to moderate, with (theoretically) a large amount of time to review each post before it is put to the community. In addition to this, it appears that there is a distinct lack of the usual internet post nomenclature (i.e. no smilies or other emoticons), potentially making it harder to recognise the 'feeling' behind a post. The combination of both of these factors could lead to well meaining, but ultimately unhelpful for the community at large, editing or deletion of posts.

I suppose this raises the question: 'what is the intent of moderation of this forum?'. I am not sure on current practice, but I feel that a step in the right direction would be the 'moderation of moderation'. This would be where the deletion or edit of a post could not be finalised by a single moderator, but would require the group consultation of at least one other of the moderation team (this would also prevent the deletion of topics or responses by mistake). If it is not already the case, a report could be sent by email to the 'offender' detailing which post was deleted and why. Additionally, much like sites like 'facebook', would it be useful to have a 'report' button which could be used by forum users to identify particularly offensive posts?

I think it is fully understandable that people could be upset through the deletion of their posts, especially if they are not informed why, and something like this may help.


Personally, I quite enjoy reading 'Classic Codger's postings as they have a similar intonation and set of opinions as my grandparents. Additionally, in regards to topic response, in many cases, I feel that the optimal response has already been made, making further responses (at least by me) a little redundant. Is it helpful to respond with an 'I agree' to a topic?

I'm sad to see this kind of melodrama playing out, in a place I, like a few others have mentioned, thought was supposed to be different.

If anything, there is irony in the outrage, hysteria and offence, proving that we can perhaps be just as susceptible as NTs.

With that said - and as a relative nobody here - I concur with the various sentient strands of this discussion. Advice seems hollow, concern emotionless and the only kernels of integrity, warmth and wit comes from the weathered members who stick around for reasons only known to themselves. Thus, evidence - or at the very least, claim - of censorship is bound to stoke anger and feelings of betrayal.

My attachment to this forum has waned, since rushing to join it, but I would be sad to see it wither and sit as a husk - there must surely be a solution to calm the waters. 

The basis, or lack of basis, for the complaints aired on this thread matters to me not merely because I'm curious (which I am), but also because I thought I;d found somewhere I could rely on as a source of friendly advice, thought-sharing etc.  This thread is making me question whether I've beenfoolish in being so trusting (wouldn;t be the first time), or whether I am being foolish in letting myself be swayed by the opinions of others (also, wouldn;t be the first time). Hence why I would like to understand the issue. So far, nobody on the complainants' side has said anything to explain it - just reiterated the same thing over and over again, without any backup.

I have found Classic Codger's input very useful up to now, so I hope he/she/you won't leave without very good reason (maybe CC has alreadyleft, hence the 'he,she') 

Coincidentally, I have received another queued and moderated email from the stem cell thread - NAS is moderating people on both sides of this argument apparently

Just to add, I find it horribly offensive that it is thought a terrible thing I should want to 'cure' my child. Of course I want to cure her. As it stands right now she has no sence of danger, she cannot speak and only understands very basic commands. So when myself and my partner pass away one day who will look after her? She deserves all the help she can get to become and independant person, to be able to live her life when we go

Also, I was reading around some Oliver Sacks stuff earlier as I had heard that he died recently. I hadn't realised that he was associated with the Neurotribes book. I've just downloaded it from Amazon and will read it in due course.

Hi KaloJaro and CC

If CC is discretely pursuing a complaint with CQC then this does not seem a very discrete way of going about it. I don't see what it has to do with CQC as CC is not under the care of NAS. If he was under their care then his participation in this forum would not be part of that care package.

It is sad if CC feels as though he has come to real harm and I would seriously urge him to seek assistance from his GP to resolve any ills or injuries that he has suffered. Fixing issues should always have a higher priority than making complaints whilst an issue is allowed to fester.

electra said:

Regarding the limits of free speech I once read the following 'your right to swing yoiur fist ends at my nose'.

I take your good point recombinantsocks but would we defend anyone here who wanted to 'cure' gay people and  make them straight? The idea of 'curing' autistic people is just as abhorrent to some of us.

I do understand that point of view but I don't agree with it and we have to debate the points carefully and in a civilised manner. Some people, myself included, understand autism as a problem whereby I have a missing sense that informs me about what other people are thinking. This leads to misunderstandings and fights with other people (NT or autistic!). I liken it to being blind or deaf, I am one sense short of the complete set. We appear to be "different" but the difference can be diagnosed with a set of clinical tests and we benefit from, and expect, care from the NHS and other services. Our difference is apparent in our behaviour, we are often indifferent to peoples feelings, are often beligerant in arguments and have problems with rigid and black and white thinking. It seems to me that people react against us because of those behaviours. People who are gay are also different but their sexuality does not make it hard to perform a job or to go about their lives. If their sexuality is evident then people do discriminate but that is based on prejudice rather than on their ability to do particular tasks. I am comfortable with the condition and do not expect a cure but my life has been made significantly more difficult because of it and I think a cure could have benefited me. I expect many blind people can come to terms with their blindness but they would also welcome a cure.

The avoidance of thinking about a cure is as abhorrent to a parent with a disabled child as is the idea of a cure is to you. People may have interpreted CC's post as an attack on those who wish there was a cure and his colourful and grown up language have added fuel to the fire and the moderators have stepped in. 

electra said:

Autistic people here constantly find their opinions and posts subject to change at removal by moderators. This leads to self-censorship - we don't post anything we think wil get removed even though this means we cannot express our opinions and must instead conform to the NAS idea of autistic people - meek, compliant and deserving of support and fundraising by neurotypical people.

I think the NAS should wake up and smell the coffee, we are defining ourselves, are proud of what we are and don't seek to be like neurotypical people. We want a voice here, our voice. And if we can't have that then the NAS can't speak for us or say it represents us.

Another post from someone censored:

"I am pursuing advice, and am now following up with the Care Quality
Commission, discretely at this stage. The forum is here to support disabled
people. The way rules designed for last resort are being used regularly and
without prior warning to silence people is a matter of failure of public duty
in care. The forum does seem to fall within that envelope.

Public reprimands should only be used after private methods have failed. But most
especially putting all an indiviual's posts in a queue for review is
according to the rules as written, a last resort. It is being used to simply
firefight community concern. This is a clear case of bullying of disabled and
disadvantaged people.

Obviously no-one will see this unless someone gets the email and reposts it."

Sorry Technophobe, in short, there has been a lot of instances where the moderators appear to have over-reacted or taken steps to 'shame' or otherwise censor posts by users with ASD to keep the forum in line with their own expectations.

I am frankly furious as everything I've seen so far that has been removed from the public eye is part of a reasonable debate. Recombiantsocks, I understand where you are coming from. But I haven't seen this sort of scruitiny from the mods on posts by the parents of those on the spectrum, and that in itself if discrimination.

Yes there should be some safeguards in place, but face it: We have ASD. Debates will get heated. Tempers will be lost. But from looking at other forums I can see NOTHING here that would justify this behaviour by the Mods (and thats even compared to the BBC Have Your Say section). If anything, a lot of the debate here is damn polite!

Electra has it summed up in my opinion. If the NAS won't let us use our voice then they frankly don't deserve to represent us.

Suggestions were given for improving the forum. Frankly the mods response was to dismiss those suggestions and continue with what -they- think is best.

I speak for myself. Until a Mod decides I shouldn't apparently.

Last try: Can somebody please explain what the problem is?!  It seems like a real storm in a teacup - BUT, judging by the extreme passion this thread has aroused, I reckon I must be missing the pint. If I am, will somebidy be good enough to let me know? Thanks.

Regarding the limits of free speech I once read the following 'your right to swing yoiur fist ends at my nose'.

I take your good point recombinantsocks but would we defend anyone here who wanted to 'cure' gay people and  make them straight? The idea of 'curing' autistic people is just as abhorrent to some of us.

Autistic people here constantly find their opinions and posts subject to change at removal by moderators. This leads to self-censorship - we don't post anything we think wil get removed even though this means we cannot express our opinions and must instead conform to the NAS idea of autistic people - meek, compliant and deserving of support and fundraising by neurotypical people.

I think the NAS should wake up and smell the coffee, we are defining ourselves, are proud of what we are and don't seek to be like neurotypical people. We want a voice here, our voice. And if we can't have that then the NAS can't speak for us or say it represents us.

Internet forums are not obliged to publish everything that members want to post. If they published everything then they would open themselves up to all sorts of legal actions (libel, Equality Act, etc etc). Nobody has a right to force NAS to take these liabilities on so they reserve the right to moderate any submission. The Guardian have their Comment Is Free sections and you will frequently see that submissions are moderated in accordance with their rules. The Guardian is proud of its liberal ethos and yet it does not allow a complete free for all.

One person't moderation is another persons censorship but we are subject to the rules of the forum and the laws of the land so there are limits to free speech.

I am passionate about getting better treatment and care for autistic people but that does not mean that I have any obligation to defend everything that an autistic person does. I cannot rely on CC's unconditional support for everything I say and similarly he cannot rely on my unconditional support. We can express ourselves as long as we are not offensive to others even if they are doing things that we might disagree with. Treating or trying to cure someone's autism is their prerogative. They are trying to do something to benefit a disabled person and we should be very careful about attacking someone for doing that. I suspect that such an attack might fall foul of the same Equality Act that affords me, and others on the forum, protection from attack.

Even the UK parliament has rules and the speaker regularly rules on questions of unparliamentary language. Perhaps we should follow their example?

Recombiantsocks, I fully support your arguement. However when it seems the other party is showing no interest in actually listening or engaging in the debate, it all seems rather futile. Here are more from the people who have been censored:

"As my posts are being censored, other posters may not see this reply to
Kalo Jaro.

I came in on this thread yesterday. I immediately got a
public reprimand from Bob, suggesting I continue in a one to one by email. I
have already had a one to one discussion and find no attraction in doing
so.

After Kalo Jaro posted following my reprimand, I tried to respond
to Kalo Jaro, but found my post (and my attempts to post elsewhere) in a
queue awaiting review of content before being allowed to post. Bob had not
only suggested one of these patronising 1:1s by email, but taken an action to
suspend all my attempts to post.

I have now formally complained in
writing to the Director of NAS.  I also require that the messages in
this thread including the suspended ones, be shown to the
Director.

Somer might think it exaggerated, but the way we are being
treated here as adults on the spectrum is comparable to abuses in care homes.
We are being treated in an undignified and humilating manner.

Hence if
I do not get a proper reply from the Director I will take my complaint to the
Ombudsman

It is my view that NAS is no longer fit to support people
with autism with fairness and dignity.

I'm speaking up on behalf of
other members of the forum who have been subjected to public reprimands but
find myself subject to censorship.

I no longer feel NAS is deserving of
the money I give to it. Maybe other support forums need to know what is going
on."

((And another one, which I presume to be CC by their writing style))

"Thank you all for posting such positive messages. I apologise for my
earlier post about feeling 'underwhelmed' by the lack of support, I take on
board entirely Technophobe's comment about waitng for people to
respond.

I shall take it that you all understand the depth of my
distress, how it was caused, and why I thought that my best option was to
take myself away from this unnecessary stress. I've thought about it (as if I
could have NOT thought about it, LOL!) and here is my response.

Bob seems to think that it's fine to abuse us, just as long as they issue an
apology. I have no idea if SophieMod is AS or not, and it doesn't concern me
unduly. I do not blame her, I have no issues towards her personaly, I accept
her apology unreservedly. What is regretable, and cannot be taken back, is
her original 'moderation' or the effect it had on me. I suffered real and
genuine harm, and still am.

What has helped me enormously to pick my way through the melee is that I have had such good supportive feedback, just
as others have had, from AS people who think that I've helped them, speak
well on our behalf, and am appreciated for my involvement. I cannot tell you
all how much that means to me anyway, but this week, especially.

I actually felt bad when I was being urged not to leave, because I felt like I
was choosing to abandon my community, and the last thing we need is to be
disunited. At the rate of 1 in every 100, we are rare people, and we can only
rely on each other.

KaloJaro, your observations are brilliant, please stay with us?

I'm staying, unless, of course, we collectively decide to leave the NAS. My view is that effective change is brought about by being 'in', not 'out'. One of the major problems we have at the moment is that we cannot network with each other.

Does anyone have a suggestion as to where we can talk openly and exchange contact details? I would suggest, also, that we each set up a separate e-mail account to keep separate for this purpose only. Again, any suggestions about free
e-mail accounts? Come on you IT AS people!

Electra - as per your suggestion, I'd like to meet you on the 5th, do you have a suggested time/location? Anyone else care to join in?"

((And another one, presumably CC too))

"It appears that I too have been queued for site moderation."

Back to me and my opinions... again, we are ADULTS. We are humans with the right to our freedom of speech. Having ASD does NOT in any way justify censorship of our thoughts and feelings in such a blatent manner.

Rather than hide or censor posts to hope the issue will 'go away' I would much prefer people engage in PROPER DEBATE on the forum for EVERYONE TO SEE.

Isn't that the point of a forum after all?

We are not here to just read about the endless stream of parents and others struggling to get a diagnosis due to lack of council fundings or services in their areas.

We are not here to just try and make a parent understand that a child with ASD isn't acting out just because they can but because they feel they have no other choice.

We are not here to just sit passively and be presented as meek passive animals on display to raise money for a charity WHICH IS SUPPOSED TO HELP US.

To the moderator saddled with reading this, thank you reading this far. I am sorry if my opinion upsets or offends you, but I have a legal right to state it.

A parting thought:

If this were a discussion regarding race, religion or sexuality, would the moderators be so keen to censor us I wonder?

It appears that I too have been queued for site moderation.

Thank you all for posting such positive messages. I apologise for my earlier post about feeling 'underwhelmed' by the lack of support, I take on board entirely Technophobe's comment about waitng for people to respond.

I shall take it that you all understand the depth of my distress, how it was caused, and why I thought that my best option was to take myself away from this unnecessary stress. I've thought about it (as if I could have NOT thought about it, LOL!) and here is my response.

Bob seems to think that it's fine to abuse us, just as long as they issue an apology. I have no idea if SophieMod is AS or not, and it doesn't concern me unduly. I do not blame her, I have no issues towards her personaly, I accept her apology unreservedly. What is regretable, and cannot be taken back, is her original 'moderation' or the effect it had on me. I suffered real and genuine harm, and still am.

What has helped me enormously to pick my way through the melee is that I have had such good supportive feedback, just as others have had, from AS people who think that I've helped them, speak well on our behalf, and am appreciated for my involvement. I cannot tell you all how much that means to me anyway, but this week, especially.

I actually felt bad when I was being urged not to leave, because I felt like I was choosing to abandon my community, and the last thing we need is to be disunited. At the rate of 1 in every 100, we are rare people, and we can only rely on each other.

KaloJaro, your observations are brilliant, please stay with us?

I'm staying, unless, of course, we collectively decide to leave the NAS. My view is that effective change is brought about by being 'in', not 'out'. One of the major problems we have at the moment is that we cannot network with each other.

Does anyone have a suggestion as to where we can talk openly and exchange contact details? I would suggest, also, that we each set up a separate e-mail account to keep separate for this purpose only. Again, any suggestions about free e-mail accounts? Come on you IT AS people!

Electra - as per your suggestion, I'd like to meet you on the 5th, do you have a suggested time/location? Anyone else care to join in?

CC and others have raised a number of issues for discussion on this thread. Some opinions follow which may differ from others' opinions on the forum. All I ask is that people strive to consider what I, and others, have said and make an effort to understand each others' points of view and the reasons why people have arrived at their current views. 

Treatment of autism is seen as desirable by some people but not others. It seems to me that people want their deeply disturbed, dysfunctional, very disabled children or relatives to be helped to a better place. Other people are capable of living full and rewarding lives with their autism. The fortunate few, it seems to me, should not interfere with the opinions and wishes of a different set of people with different issues and challenges. The issue is not black and white however. Some parents have not worked out how to enable their children to live a full and rewarding life even though it may, in some cases, just take a different approach to parenting. Some of these parents want their children to be fixed. This is misguided and futile. There have been recent posts where a couple of people have posted here in a state of great distress and anger directed at their children - these people need to be tackled appropriately, compassionately and helped to see a different perspective. They do not need to be regarded with contempt and anger. Anger achieves little apart from upsetting the person who is angry.

The forum has to be as good as it can be for as many people as possible for as much of the time as it can manage. To me, that means that it needs to be moderated. Moderators are only human (and sometimes autistic) and mistakes or differences of opinion will arise from time to time. I do not think there is any evil intent or any conspiracies or ulterior motives involved. The moderators have to deal with people who are at various points in the process of self discovery. As such, I am becoming aware that I/we can sometimes be judgemental and actually not very easy to get along with. We are somewhat like cats or anarchists - difficult to herd and organise and often fractious and opinionated. My tendency to be over critical and argumentative is what put me on a path to diagnosis, I suspect that our inability to get along with others is a common path to wards diagnosis. 

The forum also has issues that arise from the failure of the NHS and others to provide an adequate service of diagnosis and care for people with autism. The continual stream of misdiagnosed, angry and struggling people that arrive on the forum's doorstep each day make this a caustic and difficult place to endure. Many of these people come with MH problems on top of their basic ration of autism. Sometimes this can contribute to the bad tempered and argumentative discussions that arise. This, combined with the vulnerability of some forum visitors, makes it imperative to have some moderation. Moderation must however be be undertaken with these difficulties in mind and needs to be done privately and sensitively.

We should not, in my opinion, throw the baby out with the bathwater and desert the forum and allow it to decay and fall into disuse. It serves many useful purposes and it is a powerful resource and source of collective knowledge and even wisdom at times. Lets suggest improvements and work with the team at NAS to improve it. Is there any other alternative than that the forum must evolve and improve its approach continuously?

A further note in the event my previous post is 'censored':

We are NOT here to sit around and make the NAS look good. We are HUMANS with thoughts, feelings and suffer more as a result of the neurotypical dominated world. If this were to happen on a forum dedicated to issues such as race or sexuality there would be an outrage. But because we have autism, this is apparently acceptable?

Technophobe, this blatent censorship and lack of support (and coverage of issues endured by) for adults on the spectrum is why I and at least two others I know of with ASD have issues with the forum. Thankfully I subscribe to posts so got to see this blatent censorship in action.

Whoever posted this, please state your name as I'd like to know who else we have lost....

The reply was to the discussion 'AS people, please can you help me?'

Here’s the reply -
"

The forum I feel has a current problem, how NAS perceives it.

There
was an article in "Your Autism magazine" Winter 2015 "Spotlight on our online
Community - How the NAS can help you". The article seemed to me astonishingly
patronising, and I quote from the central paragraph:

"What kind of
problems do people post about most often? It's not all problems (people have
a laugh too) and we are not sure therre is a most asked question. Right now
someone is asking why their son won't wash or use deoderant; someone is
talking about losing their job through discrimination and somone is
discussing their love of cup cake baking. We never know what will pop up
next"

Given the issues prevailing at the time, where we are being
inundated with cries for help from desperate people, this is utter nonsense.
And I searched and searched and couldn't find any mention of cup cake
baking

However, in my opinion, NAS has appointed Bob to clean up the
forum in case it harms funding appeals or some such. The article also has
this quote from Bob, (who stated two postings back on this thread that "I am
not convinced your assertions are shared by the majority of members". In the
article Bob says:

"I have often been moved by the honesty and courage
of community members"

Not the way it comes over, Bob.

We did have
a period in  December when many regulars stopped posting and some
promises were made by Bob, none of which have been fulfilled"

((Next post by the same individual I presume))

The reply was to the discussion 'AS people, please can you help me?'

Here’s the reply -
"

It seems my attempt to reply was suspended.

I will no longer post
on here. I have had enough. I will also put in a complaint and will withdraw
my membership of NAS.

If this is also suspended that is the end of my
support for NAS for all time"

((And the very last))

The reply was to the discussion 'AS people, please can you help me?'

Here’s the reply -
"

In the light of the double suspension, I will withdraw my membership of
NAS. I want my three postings show to the director of NAS immediately"

It seems my attempt to reply was suspended.

I will no longer post on here. I have had enough. I will also put in a complaint and will withdraw my membership of NAS.

If this is also suspended that is the end of my support for NAS for all time