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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

  • 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?

Reply

  • 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?

Children
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