AS people, please can you help me?

I am trying, with great difficulty, to understand something. I could really use your help with this, it's literaly taken me over (you know the one) and I need the thinking of others. Call it an intervention!

Before I begin, please can I ask you to look over the following article?;

nymag.com/.../

I have seen many posts from NT parents about 'treatment' for AS.

The question I have asked myself is, 'if I could go back and be changed into an NT by 'treatment', would I choose it?'

My firm answer is 'No'. I am the sum total of a life spent as an AS person. I can't change my past, so my best option is to use the learning that is  'the sum of who I am' to help others if I can, and especially for the next generation. If any of you think that I can be helpful and supportive, understanding and insightful, fine. If you think the opposite, also fine and I am sorry that I wasn't helpful. I do what everyone does - the best I can.

I'm an egalitarian by instinct. I will state my thoughts and opinions, but they are mine alone. When I read other people's posts, I assume the right to agree or disagree, and simply expect the same fairness back.

Thank you for listening this far, and now I've come to my taxing absorption.

I read this post under the title Stem cell treatment for autism: 'Has anyone undergone stem cell treatment for autism?'

I responded with '

This is my personal opinion. I don't argue my personal opinions, just for them.

How about 'tretament' for being NT? Their capacity for being the most illogical, spiteful, self-destructive creature on this planet leaves me staggered. I pity the poor creatures and their lack of insight, but what can you do? No-one is researching 'treatment' for them, because they collectively agree that their unsanity is 'normal'.

The inmates are running the asylum.

Now, I thought that I was humourously disparaging the idea of 'treating' people just because they are different. It is my belief that most people will be able to see that I have reiterated the concepts of the same thing as the poster, with our roles reversed. Here's your mirror, as it were.
I just discovered that I got moderated for this post . Apparently, I should watch my language. A particular word picked out is asylum because it is derrogatory towards past attitudes to mental health (?).
I am totaly confused. I don't know why 'mental health' is being brought into it. Given the various current uses of the word 'asylum' I don't know how it becomes offensive, even in context, 'the inmates are running the asylum' is a common concept and has been the root idea behind several award winning books, plays and films, yet it appears that some ignoramus doesn't like it. And apparently, I'm supposed to know this and understand it in their particular case. Que?
Please, any insights will do. Sooner or later one of you will say something that will help me get a grip on this. You know the one where the more you try, the more you're shaking your head, you're laughing bleakly, you don't know whether to be angry, offended, confused, puch drunk, weakened, disempowered, desperate to understand, shocked, fed up with mods public messages yet again, privacy invaded, and a whole bunch more, and because you can't choose one, you have them all at once instead. That's where I am right now.
Phew! Bit of a maze. Ariadne, the thread!
Parents
  • 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.

Reply
  • 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.

Children
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