baddad Report post Posted January 12, 2009 We can all sit here and pretend that the system is not flawed and that mistakes are rare if we wish but the system does fail families and quite a few of them. Hi all/cat At the risk of finding fingers pointing in my direction this is exactly the kind of sweeping generalisation that i believe contributes so much to the way this forum has changed. I have never seen anyone on this forum saying (or pretending) that the system isn't flawed or any of the other things you've said above. I've seen people challenge, and have myself challenged situations where people seem hell bent on blaming 'the system' for absolutely everything and making sweeping generalisations. Saying that (i.e.) parents fail children too does not in anyway suggest that the system isn't flawed, it is just highlighting that it isn't the only reason for our children's problems and that it's not an 'exclusive to autistic people' problem. The documentary that was on a week or so ago about 'problem kids in school' was a great indicator that the kinds of problems our children face in school are exactly Thai same problems that many non-autistic children face. That should be comforting (in a very skewed, mixed up way) but it doesn't seem to be viewed that way because many parents seem to want to say these behaviours arise exclusively from autism. I don't know what that means, but i do know such narrow perspectives have nothing in common with holistic assessment most parents of autistic children say they want. Time and time again we are seeing threads closed and there is now a pattern to their closure. It appears that it is OK to have an opinion and my goodness my do I hold some of them, but if you state too many of them it can become really personal and I found that out myself a short time ago. The forum has gone through far worse periods of 'closed threads', and there have been numerous 'patterns' behind those closures. I think given some of the posts in this discussion that we have clear evidence that short or selective memory can play a huge part in how people perceive events. I also often wonder if I am posting on an autism forum because sometimes it appears that we have to consider every other possible thing that might just be causing a problem before we can bring the fact that the child or adult has autism into play. I do not come here to be told that 'all children do that' I walked away from some of my friends because of that attitude. OK all kids do most things but not like kids who have autism. I don't know about 'have to', that's a purely personal choice, but I do think 'should' is a very important distinction... Maybe it's the background i come from as a carer, but i have always, always always been taught to view disabled people as human being's first and not to define them by their disability. I take autistic people at face value. if i see a behaviour i don't automatically ascribe that behaviour to their 'label' i actually look beyond the label. Sometimes a behaviour can be directly attributed to their diagnosis, sometimes it can be indirectly attributed to their diagnosis in combination with other factors (internal and external) and sometimes it has nothing to do with autism at all. Your last sentence emphatically removes that last consideration from the equation. Now, anyone wanna buy some brillo pads cheap? Great for pots or kettles that have got a bit grubby along the way L&P B D Quote Share this post Link to post Share on other sites
Flora Report post Posted January 12, 2009 Just want to clarify a couple of points and one or two other things. When a membership of a forum is as large as this one it's inevitable that it will take on a life of it's own. At one time, going back a few years, the mods/admins and established posters set the tone of the forum. Then the membership grew very quickly and suddenly the tone changed with it. It's natural progression and while it might be difficult for some people to adjust to that, it's inevitable. As such, the mods don't set the tone of this forum now, they moderate what is happening and that is all they do! So please, if anyone doesn't like it, lets not blame the people who are keeping it safe! Secondly, just to defend myself as I seem to have been the cause a bit of contention, I am far from being a vindictive, aggressive or unfriendly person. Being a northerner I'm a bit blunt and as I touch type I tend to type the way I speak, but as there is no body language or other mannerisms in typing, it maybe comes accross worse than it would sound live IYKWIM. People who know me in r/l either accept that about me or they don't, but the people that do accept it find themselves with a very good and loyal friend who would always treat them fairly and with bags of respect. Thirdly, loads of valid points in this thread as long as you can pick your way through the palpable fog of hypocrisy. Flora Quote Share this post Link to post Share on other sites
billabong Report post Posted January 12, 2009 Barefoot P.S. Tempted to delete, but.......must.....p...o...s...t....! Good for you! And I'll admit that I spent a l-o-n-g time adding my bit to the 'Borderline AS' thread as I really, really didn't want my comments to be taken the wrong way by anyone. Here's to openness and acceptance - if only I knew how to add the glass of wine icon. Quote Share this post Link to post Share on other sites
CEJesson Report post Posted January 12, 2009 I think one of the underlying reasons is that we all have varied levels of experience of ASD and this directly affects the views being posted on here. This forum may well have been an instance whereby people with a higher level of know how in autism were first to join, but there are now a lot of younger members my age that are effectively 'starting out' and come here to learn as well as ask for guidance. Quote Share this post Link to post Share on other sites
bid Report post Posted January 12, 2009 (edited) Now, anyone wanna buy some brillo pads cheap? Great for pots or kettles that have got a bit grubby along the way Flora Thirdly, loads of valid points in this thread as long as you can pick your way through the palpable fog of hypocrisy Any more constructive suggestions? Bid Edited January 12, 2009 by bid Quote Share this post Link to post Share on other sites
baddad Report post Posted January 12, 2009 (edited) Any more constructive suggestions? Bid sorry - I rose to the bait briefly then. i apologise wholheartedly, and if one of the mods wishes to delete this post that's fine by me. Actually - after the edit i realised that leaving NOTHING there with the quote could have actually looked worse than what I put, so while still apologising for rising to the bait I'll reinsert my original reply, which was 'yes look at the top one again'. Sorry. Edited January 12, 2009 by baddad Quote Share this post Link to post Share on other sites
bid Report post Posted January 12, 2009 (edited) Sorry you think I'm baiting you, BD Bid Edited January 12, 2009 by bid Quote Share this post Link to post Share on other sites
LizK Report post Posted January 12, 2009 Hi all/cat At the risk of finding fingers pointing in my direction this is exactly the kind of sweeping generalisation that i believe contributes so much to the way this forum has changed. I have never seen anyone on this forum saying (or pretending) that the system isn't flawed or any of the other things you've said above. I've seen people challenge, and have myself challenged situations where people seem hell bent on blaming 'the system' for absolutely everything and making sweeping generalisations. Saying that (i.e.) parents fail children too does not in anyway suggest that the system isn't flawed, it is just highlighting that it isn't the only reason for our children's problems and that it's not an 'exclusive to autistic people' problem. The documentary that was on a week or so ago about 'problem kids in school' was a great indicator that the kinds of problems our children face in school are exactly Thai same problems that many non-autistic children face. That should be comforting (in a very skewed, mixed up way) but it doesn't seem to be viewed that way because many parents seem to want to say these behaviours arise exclusively from autism. I don't know what that means, but i do know such narrow perspectives have nothing in common with holistic assessment most parents of autistic children say they want. I expect the world to do a lot of adjusting for J, but equally try to help J make some adjustments for the world he lives in, ideal or not. is what I try to aspite too but the balance is hard. I have never been a prolific user of the forum but have found it immensely useful at various points and grateful for the generosity of members in giving their advice and help. Agree with both BD and Techersmom. Being lazy so quoting but it was the sort of polarisation of attitudes and 'overblaming' autism that led to my visits here being less frequent. Not a conscious decision or taking offence but feeling I had little in common or drawing me here partly because I am not overly embittered by the system or my child. I found the 'blame autism for everything' posts difficult to read actually, felt sad about them and because it is something I struggle not to do with my child. Seemed silly for me to get het up about something in cyberlife whenhave better things to get worked about IRL! In the interests of not being polarised and just blaming this forum I think any internet forum struggles with the many of the issues raised. I guess though this forum differs from mainstream parenting forums because of the situation we are in bringing up children with autism or living with autism and the additional challenges and stress that brings undoubtably brings extra stress. Posting in haste on a computer screen when riled up you can sometimes forget that there is a real life living being with feelings and maybe their own problems sitting at a computer somewhere else reading your message. Equally it is easy to intepret something in a way not intended. The nature of this forum and its users and the issues with theory of mind that is inherent in autism is inevitably going to lead to dogmatic viewpoints or fixed beliefs that are not borne out of malice. Quote Share this post Link to post Share on other sites
onlycrazygal Report post Posted January 12, 2009 I do not wish to persue previous discussions mods so please down your weapons! This is my last post here, Im not stating this for a reaction, before you attack BADDAD ok.....As far as I am aware during my time on this forum I have been nothing but courteous and polite to everyone. I had only just recently returned to the forum as I felt bad being away so long, I knew some would be wondering how I was, I wanted to at least let them know I was ok.... this forum has changed so much..... What the heck happened ? Im saying a quick thank you and goodbye to those who have supported me in real difficult times on this forum in the past, you know who you are. I couldnt just leave without acknowledging what this forum once meant to me, the warmth and unconditional acceptance was well appreciated. I wish you well OCG ONE LAST THOUGHT, THOSE THAT ARE HAPPY WITH THE SYSTEM ARE USUALLY THE ONES THAT HAVE YET TO EXPERIENCE IT....... OH DEAR WAS I NAUGHTY LOL..... Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted January 12, 2009 I couldnt just leave without acknowledging what this forum once meant to me, the warmth and unconditional acceptance was well appreciated. Please don't go. There are still people here who are able to offer you support. We have all been through tough times of one kind or another, and you have shared some of your tough times with us. Thank you for coming back and letting us know how you are. Lizzi xx Quote Share this post Link to post Share on other sites
Flibs Report post Posted January 12, 2009 I will put my hands up and say I have not read all the replies but also to say I have read this forum on and off for a few years I joined hoping I could share experiences and actually help others , I find the derogitory comments towards social services difficult as that is my job I would also like to take this opportunity to say that I wonder why that a family member or a person with a diagnosis of autism or aspergers feel the need to in fact have a forum dedicated to them as it places them apart from mainstream society. My son has aspergers and I embrace that as the person he is there is nothing wrong with it so having a forum that suggests things need to be addressed I too feel out of sorts ,posting here and only do so in case parents of newly diagnosed or those suspecting their chidren need support I hope to help Quote Share this post Link to post Share on other sites
zaman Report post Posted January 12, 2009 For what it is worth, I have always found this forum a very useful resource. I am one of the many that often visits, but seldom posts but only because I usually find that someone much more articulate than me, or more experienced, can put things a lot better than I could. Yes it will have changed over the years, that is only natural that it becomes an organic process and people come and go. After all, what would Dr Who be like if we had David Tennant for ever as the Dr? Yes, there have been times when I have posted topics and not liked some of the responses - but then in the cold light of day I have to accept that's what happens if you ask a question (and also sometimes I know that I need to get a different opinion even if I don't want to.) Very few of us have much in common outside of autism. Our backgrounds and experiences probably mean that we wouldn't reach out to each other in the real world, and may hold opinions much opposed to our own. However I have found this forum to be something of a haven in a heartless world (10 points if you can name that quote) in some of my very dark moments in coming to terms with my son's autism. The support that complete strangers gave me was invaluable, and I hope that I can pass some of that on in turn. Z Quote Share this post Link to post Share on other sites
ScienceGeek Report post Posted January 12, 2009 I've been thinking long and hard about my response to this thread. I think it is good to air things before they are let to build up, and in a constructive way. It doesn't help anybody having members attack each other, it only serves to make each side bitter and sad. As with any kind of online communication things can be taken in the wrong way and not as the poster intended. With a membership that has grown the way that it has there are bound to be times when there are clashes of personality especially about some topics that people feel particularly strongly about or are controversial in some way, the main thing is that there will be differences of opinion but to respect each others right to hold those opinions. Personally I haven't really had any problems with the forum. Yes, I have only been here for a little over a year but still I would like to think that I've made some kind of contribution. Sometimes I'm a bit wary about posting, not due to the expectation of sarcastic or negative responses but that I might break some kind of rule. There are other forums that I can discuss the kind of things that I'm on about, but none that I feel comfortable in to do so (take that as a compliment to the forum!) I've had some great experiences on this forum so far and it was great to meet those of you that I did meet at Greenwich. There have been some really supportive people who have offered advice when I really needed it the most. I wouldn't want this place to be shut down. <'> Anyway that is enough blathering from me, SG Quote Share this post Link to post Share on other sites
bid Report post Posted January 12, 2009 sorry - I rose to the bait briefly then. i apologise wholheartedly, and if one of the mods wishes to delete this post that's fine by me. Actually - after the edit i realised that leaving NOTHING there with the quote could have actually looked worse than what I put, so while still apologising for rising to the bait I'll reinsert my original reply, which was 'yes look at the top one again'. Sorry. I shall bow out of this thread now I knew Nellie back in the fledgling 'Krism' days of this forum, when she was perhaps the central point of advice and knowledge here. Without her help (and my dear friend Helen) I would never have got my son his Statement and place at a residential school after he came out of school with a severe breakdown. I was then happy to be able to pass on her advice and my experiences to subsequent members in similar situations. When I saw her thread today I really, really thought we had a chance as a forum to find some constructive ways through the concerns that many members have been voicing over the last year or so in an open and respectful way. Now I am apparently 'baiting' another member This is not something I intended to do at all. I have tried to help keep this thread on topic and as positive and constructive as possible. Bid Quote Share this post Link to post Share on other sites
Cat Report post Posted January 12, 2009 Now I am apparently 'baiting' another member This is not something I intended to do at all. I have tried to help keep this thread on topic and as positive and constructive as possible. Personally I do not think that you baited anyone Bid. Personally I think that as usual the shoe was on the other foot and have thought that for some time now. But seeing as I am the only one who can either see or thinks that it makes it easier to walk away. Cat Quote Share this post Link to post Share on other sites
Enid Report post Posted January 13, 2009 Personally I do not think that you baited anyone Bid. Personally I think that as usual the shoe was on the other foot and have thought that for some time now. But seeing as I am the only one who can either see or thinks that it makes it easier to walk away. Cat No not the only one. Enid Quote Share this post Link to post Share on other sites
Kathryn Report post Posted January 13, 2009 After all, what would Dr Who be like if we had David Tennant for ever as the Dr? Why, just perfect of course - your point exactly Zaman? Ok, serious now... I've thought for a long time about how to post here - I want to add my views as any other member but wary that anything I say might come across as defensive or be construed as A Voice of the Establishment. Having said that, yesterday's closed threads have been alluded to more than once and may have triggered the current discussion so as the first was my decision I feel I should to explain my actions. No criticism was meant of any poster in particular: nobody's views were suppressed or censored and closing the thread did not imply that this topic can never be discussed on the forum again. I just thought it was best for that thread at that particular time, rather than let the discussion become increasingly polarised and bad tempered. I still stand by that decision. I accept that others may disagree. Just to put closed threads in perspective, I can count just five in the last two months: two being the aforementioned threads. Ok as an ordinary member of 4 and a half years standing: I agree with Nellie that the forum has changed, although I don't share the worries about it. Looking back my previous threads I get the impression of a much smaller core group of regular posters. Now the membership has grown and changed I think. I miss some things - like the wackiness of the Batcave, but I'm really glad of other developments, like the growth in the number of adults with AS (i.e. not parents) and the diversity of opinion that brings. Loads of people have come and gone - I think that's normal on a forum this size over a period of time. I'll never forget what the people of this forum empowered me to do for myself and others, and it's great to see others still coming here to get the same kind of information and help (less great to see that they are still fighting the same old battles). Just my opinion anyway. I still like being here. If I didn't, I'd soon go - there are plenty of other demands on my time. K x Quote Share this post Link to post Share on other sites
Flora Report post Posted January 13, 2009 For all the members who have posted in or read this thread; don't give up on the forum if you are finding it useful or supportive just because a few people chose to throw bricks at each other or portray it as a bad place. It really is a very good and useful resource despite the odd bit of sniping bid, you most certainly were baiting, but that's by the by and I won't belabour the point nor go into details on why I know you were. I haven't been on the forum much the past few weeks because I have major changes going on in my personal life. All good changes, but are causing a bit of upheavel at the moment so I don't have the time, energy or inclination to come here and be sniped at anymore. Take care all. Flo' Quote Share this post Link to post Share on other sites
bid Report post Posted January 13, 2009 (edited) bid, you most certainly were baiting, but that's by the by and I won't belabour the point nor go into details on why I know you were. Flora, why do you feel the need to be quite so unpleasant and make these veiled threats (this is now the second time you have done this)? Bid Edited January 13, 2009 by bid Quote Share this post Link to post Share on other sites
Flora Report post Posted January 13, 2009 Flora, why do you feel the need to be quite so unpleasant and make these veiled threats (this is now the second time you have done this)? Bid I'm not being unpleasant, and I'm definitely not making threats. Really I'm not. I'm going bid. You don't have to keep on at it really you don't because I'm no longer here! Without typing an essay there is no way that I can explain or prove that I'm not being unpleasant or threatening. I haven't got time to write an essay. We were friends once and I have absolutely no intention of airing this here or anywhere else. To others this thread was a discussion that got a bit heated, lets leave it at that. Best wishes bid. Life's too short to drag this out. Flora Quote Share this post Link to post Share on other sites
bid Report post Posted January 13, 2009 (edited) We were friends once and I have absolutely no intention of airing this here or anywhere else. Then why make comments like this on the open forum? Bid Edited January 13, 2009 by bid Quote Share this post Link to post Share on other sites
coolblue Report post Posted January 13, 2009 Maybe the wheels of social interaction may be oiled by the use of phrases like 'I feel...' or 'IMO...' or 'To me it appears that...' when making comments about other posters. There is no way anyone can be sure of another poster's motivation and I know from long experience how unpleasant it can be when others accuse me of being I am things I'm not or of I'm doing things I'm not doing. (I'm planning to take my own advice, incidentally.) Hth. Quote Share this post Link to post Share on other sites
Suze Report post Posted January 13, 2009 Kathryn has made some very valid and truthful points , I think forum users should stop making this thread an oppurtunity to have a go at others who they have "problems" with.It is serving no purpose at all.This thread is very important I think in ironing out stuff people have worries or problems with.If some members have an axe to grind with others they should do it via the pm system.That way they can say what they really want to and mean , air their grievances and differences and the rest of the forum does,nt have to be involved as it sets a bleak and depressing tone on the live forum... Quote Share this post Link to post Share on other sites
bid Report post Posted January 13, 2009 Kathryn has made some very valid and truthful points , I think forum users should stop making this thread an oppurtunity to have a go at others who they have "problems" with.It is serving no purpose at all.This thread is very important I think in ironing out stuff people have worries or problems with.If some members have an axe to grind with others they should do it via the pm system.That way they can say what they really want to and mean , air their grievances and differences and the rest of the forum does,nt have to be involved as it sets a bleak and depressing tone on the live forum... Well said, Suze Bid Quote Share this post Link to post Share on other sites
stressedmumto2 Report post Posted January 13, 2009 I have been a member of this forum for some years now, I rarely post but do read daily, sometimes it's nice to know I am not alone in my struggles, sometimes the advice given on issues is fantastic and sometimes it's good when members do have difference of opinions, as a person who does often find it difficult to communicate their feelings and get my point across I will often refrain from posting about my own situation and refrain from replying to other posts, for fear of maybe not making sense and sometimes I really do not want to highlight all of my own problems on a public forum so I will use the pm system. There are some very strong characters here whom have very different opinions. There are some families here who are happy with the system and some who feel that they are not and I think it's important that everybody should be able to come on here and be able to speak good and bad about the system. Not everyone has happy experiences, we have been helped sometimes by the system for the short term and we have been let down by the system long term, because the system for us have done short term, not thinking about the long term. I think sometimes when people feel they have been badly let down there will be resentment, especially for those families whereby the child may have had breakdown due to inappropriate placement/bullying and generally just not being supported, this doesn't just happen to ASD children but to NT children, in times like this there will be resentment. Many parents may come on here not really knowing an awful lot about autism when newly diagnosed, (I didn't) and how to manage their child's behaviour (I didn't and sometimes still don't) and this forum can be a real help and source of information and it's through this forum that many families will be able to obtain support for themselves, their children and the right education placements that will help their children. I think it's important to remember that no two people are the same, we all have different feelings, opinions, how we deal with things etc and we all at times may go through times in our life's when we struggle and it's at them times when support is needed more than ever. This site and many of the members and moderators over the last few years have helped me a great deal more than they know and I have been given valuable advice by members and admin who have taken their time to really help me, some of them have left now which saddens me as some of them were very experienced and were a source of information and I would like to think that many of them are not here because their families needs have changed and many of them just don't have the time to pop by it would be a shame if members and admin because they do do a fab job felt like they couldn't take anymore and wanted to leave. This forum is a really special place for many people who do not have any other support and do not know where to go for support Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 13, 2009 Mods, you all deserve a medal. I did it for a few months and it's got to be the most thankless task that anyone could voluntarily do! Flora I just thought I would second that as another ex-mod who also only lasted a few months. Unless anyone has done the job it is difficult to imagine what hard difficult work it is.....and thankless....on a voluntary basis. By individuals.....all of whom I have come across in my time here...who have no other agenda than to support the Forum and help other individuals.Karen. Quote Share this post Link to post Share on other sites
chris54 Report post Posted January 13, 2009 My natural stance is that of devil's advocate. Because of this I always think hard about any thing I post, but even then sometimes get it wrong. It would seem to me that too many people think that there are only two ways of doing things, their way and the wrong way, on this forum and in the world as a whole. I know there are a few people in the world who are set on coursing as much suffering to others as they possibly can, But I believe that the vast majority of people in this world only have the best interest of others in mind. It saddens my when I hear people saying otherwise. Accept others point of view and embrace our differences. As I ofter say "Life is to short". Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 13, 2009 Maybe the wheels of social interaction may be oiled by the use of phrases like 'I feel...' or 'IMO...' or 'To me it appears that...' when making comments about other posters. Hi coolblue - I had some trouble understanding what you were getting at here because of your use of metaphor (). Having picked it apart a bit, I think you mean that we should all temper what we say rather than phrasing opinion as fact and that equally when reading other posts (unless specifically linked to the research literature) we should bear in mind that they are often opinion based, that people will have different opinions based on their life experiences and that provided these opinions don't hurt others, difference is a positive thing. That sounds like a very sound perspective to me. Following that, I do find the massive use of non-literal language difficult here (it's a major issue for me with my ASD) although that does reflect normal life - only last night when Hev called Bid an elephant I was quite taken aback thinking where the heck did that come from until I allowed my brain to work through the use of the word elephant - but had someone called me an elephant for the same (positive) reason and I was stressed/struggling/whatever at the particular time of reading, I may have jumped to the first conclusion that comes to my head, got annoyed and that could have lead to a communication breakdown. Just to be clear, I'm not picking on Hev here, just using this as the most recent example ( please please please accept that - it's the truth) - as it shows how I can find communication difficult but then also makes me think about others - whilst I can (generally) communicate very well through the written word, I know others find it difficult and I try to take this into consideration - I don't always succeed, but I try. I think we all need to think before we post (not be reluctant, just think - did that person actually mean that as I'm reading it?) and when reading accept that others may not be expressing themselves as they would want or may be having difficulties understanding how the other posters feel about something. I wonder why that a family member or a person with a diagnosis of autism or aspergers feel the need to in fact have a forum dedicated to them as it places them apart from mainstream society. Because I value the support of others - both those experiencing similar and those who are willing to take the time to try and explain something from an NT perspective that I wouldn't get in mainstream society. I don't feel this forum places me apart - society places me apart and if anything, this forum helps me to learn integration skills. Where else, for instance, could I go and say "someone said X to me today - clearly they didn't literally mean X but what did they mean?" and then armed with such information I can better approach a similar situation in future. And, (at the risk of contradicting myself) I sometimes want somewhere I can come and be me in the (virtual) presence of others whilst still being accepted. Quote Share this post Link to post Share on other sites
aro Report post Posted January 13, 2009 My natural stance is that of devil's advocate. Because of this I always think hard about any thing I post, but even then sometimes get it wrong. It would seem to me that too many people think that there are only two ways of doing things, their way and the wrong way, on this forum and in the world as a whole. I know there are a few people in the world who are set on coursing as much suffering to others as they possibly can, But I believe that the vast majority of people in this world only have the best interest of others in mind. It saddens my when I hear people saying otherwise. Accept others point of view and embrace our differences. As I ofter say "Life is to short". Well said, my feelings exactly. <'> my opinion is just that, my opinion, I respect the right of others to have their opinion, all be it very different to mine. A x Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 13, 2009 Hi all.I have been wondering whether to post here this morning. I know there have been lots of changes on the Forum in the last year. It does appear that several regulars that were frequent posters are not around as much now.It appears that some have left whilst others are around but don't post or post less often.It has been an unsettled time. I had debated long and hard whether to leave myself.I did take a break for a while.I have been less involved mainly because I had personal stuff going and I have been limiting my involvement in lots of things....not just here. I think it is worth remembering in this discusion that there is a very big group of Forum users....probably the largest group who will not have posted on this thread. That group consists of parents who post a first post looking for help and increasingly adults who are wondering about where to sart on the road to finding out if they have AS. Many people join the Forum in desperation.They stay for a brief time at a time when they need support.There are a few strange people like myself....who become addicts....but it appears to me that many people pass through. I have only been here a couple of years so I don't know how the Forum was in the early days.However it appears to me that the group of people who are frequent posters is relatively small. However I think the Forum is probably still a significant support to many people who use it briefly at a very significant time.It is very difficult to judge how much of a difference the Forum makes for these people.However having read through many posts on meet and greet it is obvious to me that many many people are hugely helped just by knowing that somone else has been in the same situation....and they are not alone..even if they only ever post once.Karen. Quote Share this post Link to post Share on other sites
Enid Report post Posted January 13, 2009 Well said, Suze Bid I will ditto that, and <'> to you bid. Enid Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 13, 2009 I wonder why that a family member or a person with a diagnosis of autism or aspergers feel the need to in fact have a forum dedicated to them as it places them apart from mainstream society I think it is for the same reason lots of other Forums exist.Even living in mainstream society individuals need to relate to others with similar experience.I have a son with AS in mainstream school and am an active member of the local community.When even my closest friends do not relate to my experiences with Ben mainstream society can be a very lonely place. One of the leading cancer charities has been doing some excellent campaign work.The work has included both demonstating that those living with cancer often want support to live life....not about cancer.It also included a TV advert that I saw at the weekend for the charity Forum.....''.because at three o'clock in the morning you want to be able to make contact with people that understand '' [very rough quote ].As far as I can see the idea of the work that charity is doing is to enable people to be a part of mainstream society.....it does not place them apart.I don't think this Forum is any different. Quote Share this post Link to post Share on other sites
baddad Report post Posted January 13, 2009 I wasn't going to respond on this point until i saw that it had been highlighted by two other members, si i think I should: the reason i felt i was being 'baited' was because this: (Cat @ Jan 12 2009, 07:18 PM) We can all sit here and pretend that the system is not flawed and that mistakes are rare if we wish but the system does fail families and quite a few of them. Hi all/cat At the risk of finding fingers pointing in my direction this is exactly the kind of sweeping generalisation that i believe contributes so much to the way this forum has changed. I have never seen anyone on this forum saying (or pretending) that the system isn't flawed or any of the other things you've said above. I've seen people challenge, and have myself challenged situations where people seem hell bent on blaming 'the system' for absolutely everything and making sweeping generalisations. Saying that (i.e.) parents fail children too does not in anyway suggest that the system isn't flawed, it is just highlighting that it isn't the only reason for our children's problems and that it's not an 'exclusive to autistic people' problem. The documentary that was on a week or so ago about 'problem kids in school' was a great indicator that the kinds of problems our children face in school are exactly Thai same problems that many non-autistic children face. That should be comforting (in a very skewed, mixed up way) but it doesn't seem to be viewed that way because many parents seem to want to say these behaviours arise exclusively from autism. I don't know what that means, but i do know such narrow perspectives have nothing in common with holistic assessment most parents of autistic children say they want. QUOTE Time and time again we are seeing threads closed and there is now a pattern to their closure. It appears that it is OK to have an opinion and my goodness my do I hold some of them, but if you state too many of them it can become really personal and I found that out myself a short time ago. The forum has gone through far worse periods of 'closed threads', and there have been numerous 'patterns' behind those closures. I think given some of the posts in this discussion that we have clear evidence that short or selective memory can play a huge part in how people perceive events. QUOTE I also often wonder if I am posting on an autism forum because sometimes it appears that we have to consider every other possible thing that might just be causing a problem before we can bring the fact that the child or adult has autism into play. I do not come here to be told that 'all children do that' I walked away from some of my friends because of that attitude. OK all kids do most things but not like kids who have autism. I don't know about 'have to', that's a purely personal choice, but I do think 'should' is a very important distinction... Maybe it's the background i come from as a carer, but i have always, always always been taught to view disabled people as human being's first and not to define them by their disability. I take autistic people at face value. if i see a behaviour i don't automatically ascribe that behaviour to their 'label' i actually look beyond the label. Sometimes a behaviour can be directly attributed to their diagnosis, sometimes it can be indirectly attributed to their diagnosis in combination with other factors (internal and external) and sometimes it has nothing to do with autism at all. Your last sentence emphatically removes that last consideration from the equation. Now, anyone wanna buy some brillo pads cheap? Great for pots or kettles that have got a bit grubby along the way L&P B D was reduced to this: (baddad @ Jan 12 2009, 08:17 PM) Now, anyone wanna buy some brillo pads cheap? Great for pots or kettles that have got a bit grubby along the way Any more constructive suggestions? Bid which seemed dismissive and an unnecessary 'spin'. I also felt - but accept that i may have been wrong - that bid, after all the years I've known her, would have seen that for what it was - a tongue in cheek way of saying that none of us are saints. I'm sure, in the curent climate, people will be largely unwilling to see my POV, and that this attempt to explain will also be misconstrued, but, we'll cross that bridge if we come to it. Hopefully we won't. Again, apologies for making the inference, or for suggesting in the first place that the 'pot & kettle' adage could have any relevence to the tone of the thread overall. L&P BD Quote Share this post Link to post Share on other sites
coolblue Report post Posted January 13, 2009 Hi coolblue - I had some trouble understanding what you were getting at here because of your use of metaphor (). Having picked it apart a bit, I think you mean that we should all temper what we say rather than phrasing opinion as fact and that equally when reading other posts (unless specifically linked to the research literature) we should bear in mind that they are often opinion based, that people will have different opinions based on their life experiences and that provided these opinions don't hurt others, difference is a positive thing. That sounds like a very sound perspective to me. My apologies Mumble, I should have thought of that. You've understood my meaning perfectly. Quote Share this post Link to post Share on other sites
bid Report post Posted January 13, 2009 (edited) I'm sorry, BD, if I misunderstood your comment about pots/kettles and Flora's comment about this thread being full of hypocrisy. I still feel this thread is very important, especially for those members who have tried to share here why they feel reticent about posting or no longer post. I said in an earlier post that people sharing their legitmate concerns about this forum is not an attack or criticism of the forum, nor indeed hypocritical in any way. Personally, I don't think this thread is full of pots/kettles or 'palpable hypocrisy' Again, can I just say it hasn't been my intention to 'bait' anyone. Bid Edited January 13, 2009 by bid Quote Share this post Link to post Share on other sites
nellie Report post Posted January 13, 2009 I'm truly sorry for abandoning this thread. My lovely neighbour and very dear friend has died in her sleep. I have managed to read through your replies but not sure I?ve taken it all in. So please bear with me, I will do my best. It?s not just me then, but it?s really good to read so many positive views of the forum. Thanks to everyone who replied, especially the people who found it difficult to speak openly. I appreciate and value the feedback of everyone. I am not knocking the forum, the mods or admin. The people who manage this forum do a brilliant job but I think some aggressive posting is being overlooked. I am concerned that members are not respecting each other and some members are feeling too intimidated to speak up or post. No one should feel bullied or intimidated. I think this has been happening for some time but it?s gradually getting worse. I am not saying anyone is bullying or intimidating but I am saying that people are feeling bullied and intimidated. I thought I might regret posting this topic, but I don?t. I think people needed a chance to air their views. The forum is what the members make it. There are too many posts to answer each one individually but there are a few comments I think worthy of highlighting. I haven?t used quotes, I can?t remember how to use them! (it?s an age thing) Coolblue Maybe the wheels of social interaction may be oiled by the use of phrases like 'I feel...' or 'IMO...' or 'To me it appears that...' when making comments about other posters. Mumble. That's easily dealt with - develop a lack of emotional empathy and you won't give a damn about anyone else ... Erm, I'm not sure about the twists and turns in this thread - I greatly value the support virtual people give me on this forum (particularly as I'm sorely lacking in real people support) but I also recognise that I choose to be here, that I ask for opinions not agreements and that if I'm not happy here, I can use the little red cross in the top right hand corner. It's far harder to ignore real people. Nice one Mumble! Is that what that little cross is for? cmuir Debate is healthy, but I do think being respectful and not attempting to enforce one's opinion on another/others is important - I think this has been/can be a big problem. ScienceGeek. the main thing is that there will be differences of opinion but to respect each others right to hold those opinions. Chris 54 My natural stance is that of devil's advocate. Because of this I always think hard about any thing I post, but even then sometimes get it wrong. It would seem to me that too many people think that there are only two ways of doing things, their way and the wrong way, on this forum and in the world as a whole. I know there are a few people in the world who are set on coursing as much suffering to others as they possibly can, But I believe that the vast majority of people in this world only have the best interest of others in mind. It saddens my when I hear people saying otherwise. Accept others point of view and embrace our differences. As I ofter say "Life is to short". Don?t know who said this, it might have been me! I agree it?s isn?t respectful to labour a point, in fact I would go as far as saying it can come across as being aggressive and rude. Some people may feel intimidated by this style of posting. Thank you to Liz K for this observation. Equally it is easy to interpret something in a way not intended. The nature of this forum and its users and the issues with theory of mind that is inherent in autism is inevitably going to lead to dogmatic viewpoints or fixed beliefs that are not borne out of malice Me The forum was and still is a fantastic place for advice and support, don't put people off from asking for that advice. Not a lot left to say, if you will excuse me. I have to bow out now. Love to all Nellie xx Quote Share this post Link to post Share on other sites
StressedEric Report post Posted January 13, 2009 Hi Nellie I have retreived my password so that I can acknowledge that you are not wrong. Somewhow I am logged in under my old name of Stressede Eric. You probably remember me as HelenL53. I too bowed out nearly two years ago when I felt that the forum had become a place where the spirit of sharing knowledge and finding empathy and sympathetic posters had disappeared. It somehow became a battleground with everyone vying to be top of the 'hard done by' tree and there was some pretty vicious posting going on and it seemed that it was becoming a place to dump the baggage for all the perceived wrongdoing by families, friends and 'the system'. Seemed less about ASD's and more about the 'me, me, me's' of the world I have always referred to Nellie as the 'wise one' (although once in a typo I called her the 'wide one') and will always hold her in high regard. I can never underestimate how Nellie's knowledge and support has given life to my child. Nellie was there for me when I hit rock bottom and sadly, it is something I can not say about my non cyber friends. I would like to think that everyone will heed Nellies post as a reality check, and try to be kinder and more thoughtful when we post. I too am bowing out. Helen Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 13, 2009 Nice one Mumble! Is that what that little cross is for? Sorry, I didn't mean to be flippant but I do sometimes use 'humour' (well Mumble humour - most people say I'm not funny) when I'm finding a situation difficult to understand/cope with. I hope I'm not the reason some people think the tone here has changed Quote Share this post Link to post Share on other sites
nellie Report post Posted January 13, 2009 Mumble, I didn't think you were being flippant. I thought your words were wise and worthy of highlighting. I also managed a chuckle. Nellie xx Quote Share this post Link to post Share on other sites
bid Report post Posted January 13, 2009 Oh Nellie, so so sorry to hear about your friend <'> Thank you for starting this thread...I for one think it's been a very positive thing. Do hope you pop in from time to time...us Old Krismites still miss you! <'> Bid Quote Share this post Link to post Share on other sites
