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AS people, please can you help me?

classic codger

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

  • Although I have gone and mean it, I've been keeping a look out that my fellow members are not further harmed.

    I need to provide an answer to AviModerator (whom I like to think I've always found helpful).

    NAS had a thriving, dynamic forum for five years, through all kinds of ups and downs, with plenty of timely, deserved and appropriate moderation. One of the most crucial elements is that the autistic adults provided a volunteer service (that came about by accident) helping other adults with autism and using their hindsight to help parents. Parents also did really valuable sevice helping each other.

    For that NAS deserves the highest praise, but also the online community, parents and adults with autism, and the moderator team deserve to share in that praise. This online community was a star, an exemplar.

    What has happened recently (I think 3 months back, maybe less) is an extreme and odious opposite. The forum has become a nightmare for most particuipants, many of us feeling ill just trying.

    In part that has been due to a sudden massive increase in desperate people hoping the forum would provide answers. I don't know why this has come about. Maybe the success of the forum made it seem the ultimate solution. I suspect, however, that staffing of the helpline has been cut back.

    Members of this forum are only in contact through public postings on this forum. None of us are trained counsellors, none of us receive stress counselling. The pressure we have increasingly been under has been incredibly stressful. When you consider that some of the regulars are very badly affected by their autism or by secondaries like depression, it was inevitable stress lines would show.

    Instead of helping us, despite numerous requests, NAS suddenly started being incredibly heavy handed with the community rules. Last resort measures became up front measures. Every word we used was being scrutinised in case it might be a bad word. The reasons people have got warnings have been truly ridiculous. With the loading on the forum the extreme over-the-top moderation was bound to lead to catastrophe.

    One example of the obsessive moderating I pointed out recently was a change in how the rule over disclosing personal details was being interpreted. We had a new member. In his first post he mentioned the town he lived in and that he used to live in Hereford, and again mentioned Hereford. All three place names were deleted and he was given a public telling off. He never came back. 

    I did raise a complaint to the Director last week. It was dismissed out of hand. It therefore appears NAS is unable to comprehend that there is any difference between the moderation over the past five years and the ridiculously obsessive OTT moderation in the last few months.

    This site should carry a Government Health Warning.

    Don't blame the members if it has collapsed. Blame the over-the-top moderation over the last few months. But more importantly please think of the harm you are doing. Some of the regulars on here are vulnerable adults. Others are prone to very real distress on account of their autism. The break up of a valued and supportive forum over recent months has undoubtedly damaged their health.

    We have asked for contact details to be shared so we can keep in contact and reform somewhere else. This has been refused,. NAS destroyed this online community with a callous disregard for the impact on everybody concermed.

    Which is why I am pressing for an external review of NAS.

Reply

  • Although I have gone and mean it, I've been keeping a look out that my fellow members are not further harmed.

    I need to provide an answer to AviModerator (whom I like to think I've always found helpful).

    NAS had a thriving, dynamic forum for five years, through all kinds of ups and downs, with plenty of timely, deserved and appropriate moderation. One of the most crucial elements is that the autistic adults provided a volunteer service (that came about by accident) helping other adults with autism and using their hindsight to help parents. Parents also did really valuable sevice helping each other.

    For that NAS deserves the highest praise, but also the online community, parents and adults with autism, and the moderator team deserve to share in that praise. This online community was a star, an exemplar.

    What has happened recently (I think 3 months back, maybe less) is an extreme and odious opposite. The forum has become a nightmare for most particuipants, many of us feeling ill just trying.

    In part that has been due to a sudden massive increase in desperate people hoping the forum would provide answers. I don't know why this has come about. Maybe the success of the forum made it seem the ultimate solution. I suspect, however, that staffing of the helpline has been cut back.

    Members of this forum are only in contact through public postings on this forum. None of us are trained counsellors, none of us receive stress counselling. The pressure we have increasingly been under has been incredibly stressful. When you consider that some of the regulars are very badly affected by their autism or by secondaries like depression, it was inevitable stress lines would show.

    Instead of helping us, despite numerous requests, NAS suddenly started being incredibly heavy handed with the community rules. Last resort measures became up front measures. Every word we used was being scrutinised in case it might be a bad word. The reasons people have got warnings have been truly ridiculous. With the loading on the forum the extreme over-the-top moderation was bound to lead to catastrophe.

    One example of the obsessive moderating I pointed out recently was a change in how the rule over disclosing personal details was being interpreted. We had a new member. In his first post he mentioned the town he lived in and that he used to live in Hereford, and again mentioned Hereford. All three place names were deleted and he was given a public telling off. He never came back. 

    I did raise a complaint to the Director last week. It was dismissed out of hand. It therefore appears NAS is unable to comprehend that there is any difference between the moderation over the past five years and the ridiculously obsessive OTT moderation in the last few months.

    This site should carry a Government Health Warning.

    Don't blame the members if it has collapsed. Blame the over-the-top moderation over the last few months. But more importantly please think of the harm you are doing. Some of the regulars on here are vulnerable adults. Others are prone to very real distress on account of their autism. The break up of a valued and supportive forum over recent months has undoubtedly damaged their health.

    We have asked for contact details to be shared so we can keep in contact and reform somewhere else. This has been refused,. NAS destroyed this online community with a callous disregard for the impact on everybody concermed.

    Which is why I am pressing for an external review of NAS.

Children
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