A Restrained Silence ?

[Sa Skimrande]

Is it just me or is it a common perception that too many on here are biting their tongue in what they want to say but feel they can't as;'' hey, everyone is looking'', open public forum accessible via search engines ?

 

If it is I just have to ask what use is this place if those affected cannot speak what is on their mind, ask what they need to know through fear of saying the wrong thing to be judged by others aspie and the empirical NT ?

 

Me, I don't care, I am an open book, I am a near middle aged adult who has learned if something needs to be said, then damned well say it as there is no room for private whispers, as they achieve nothing except promote yet more misunderstanding, and who does misunderstanding serve yourself or those who would like to have power over you, for make no mistake there are plenty who would advise the moon was truly made from cheese to get their own way.

 

Does this website need a private room where those affected with this 'difference' can speak openly about what they need to get off their minds without judgement by those that cannot understand ?

[LancsLad]

Sa Skimrande I think your point is valid. Personally I don't feel I have to bite my lip that much. What I do do is show restraint in what I write. I often look at posts and have to ask myself the question if I wrote what I think will that be a constructive response in respect to the individual who started the post on the forum. A lot of the time I feel they would not be able to deal with what I had to say. Now some people might find that highly patronising that is their opinion.

 

At times for example people PM me and ask me questions or what my opinion is. In that environment I will be completely open and honest. I will give my views based on personal experience and offer up examples from my own life which are very revealing. A lot of the time there is no response from the individual who PM'd me. I take time to construct my responses and make sure they are positive and solution orientated. My conclusion is that these individuals are not really seeking answers or solutions in their lives. They are not prepared to look at themselves in an open way rather they just want sympathy or a place to come to for a rant. As I cannot support them in either respect they just ignore what I say and a lot of the time are incapable of saying thank you for my opinion.

 

At another level I feel a lot of individuals on the forum are very defensive over ASD. Either their own ASD or their Childs. They are far too concerned what other people think about them than they are about their own levels of self-esteem. As a result there is a defensive culture of people are looking at us and we have to be careful about what they see and feel. I ask the question why? What are these people doing for you? When I come to the forum at times I look at the bottom of the page to see a handful of members who have been signed on recently. For me they are the participants in this club, I am not interested in the onlookers of what they think about what I say. If they have a reaction then let them log on and become a member and pass comment. I have yet to see someone do this.

 

I am not in favour of private rooms because I think it would be counterproductive. I think given the development of ASD it is impossible for it to be contained in a bubble as a child or young person's condition. I believe what the forum is seeing is a natural evolution and a better picture of what ASD really means in respect to our society and the individuals within it.

 

As an art lover I am interested in works which have something to say to me, works developed from strong emotional energies, I am not into looking at pretty pictures. In a similar way the reality of ASD within our society is a collection of individual works and a collection of them are not very pretty to look at but they have a lot of very important things to say if we are to have a real understanding on the scope of autistic conditions and how they manifest themselves in people. I think the national charities often are very selective in the pictures they choose to put forwards to the public at large. They like to select a few 'nice' examples to create a mini exhibition with the aim society will come in for a look and leave a few quid in the donations box as they exit. Daytime TV programmes like to paint the same 'nice' picture to their viewers to go 'Ahh' to.

 

I think some people on the forum believe we should also try and have a forum which appears in this way, that we could come in and portray a positive image of ASD to the casual onlookers. Sa Skimrande like you I am not in favour of this at all, rather we should simply be an expression of the autistic spectrum in all its forms. A lot of people would find that difficult to deal with and at times I simply choose not to talk about things which I feel people might find difficult to deal with. I ask myself do people for example want to know what it feels like to be lying naked curled up in a ball hidden behind a mattress locked in a room in a secure mental health unit or not, and I think they possibly do not. However should someone come to the forum wanting to talk about similar types of experiences then I am more than happy to go to those sorts of places though it is painful for me to do so. Some people might say that is not a very positive example to put out there my response would be come and look at me today, look at how I have managed to turn things around.

 

At times I feel I am quite accepted on this forum by some of the members because of what I was like a number of years ago as a teacher and foster carer, because that's nice. I might be accepted because I can at times have a reasonably calm and balanced view of things because of the person I am today, that's also nice. But the bit in the middle of that, well I can tell you that was not very nice at all. If I had come to the forum then my language would have been quite different because of the issues I was facing at the time. I should and never will forget the destructive places I was in at that time and as such I will always recognise those sorts of issues and emotions in others when they bring them to the forum. I think at times the people who try to moderate things simply have not been to those places in their own lives nor would they want to do so, I can understand that at a simple level. My request would be you don't have to get involved with any posts which make you feel uncomfortable, but please recognise there are some amazing individuals on this forum who have literally been to hell and back and are in a very good position to help people, to help themselves if they are willing to do so. These places are not pretty and do not make comfortable reading, but if we are to help people we need to be able to have a voice. People often say use PM and I believe some incredible and life changing words are passed through PM but more of that stuff needs to be out in the open as an incentive for others to take on difficult aspects of their own lives.

 

I think here is a real danger of keeping a lot of these elements out of the main forum. That is that a lot of members with ASD or with children with the condition simply think they have it bad. Personally I know I haven't had life that bad because of what I have known about the things kids I had in my care had to go through and to compare my own life as being difficult would simply be arrogant. As a result I do think lots of people just go around in circles feeling sorry for themselves and a more open forum would be a wake up call for some if not all. Maybe I should bite my lip less. In the past couple of months I have thought about leaving the forum on a number of occasions because I felt I had to restrain myself from saying what I really felt. I knew at the time is I had posted people would have been upset about what I was saying though I would have believed I was simply outlining some hard to listen to truths. I did feel uncomfortable and my solution was simply to not look at the forum for a few days and just to check my PM messages. I find I am doing that more and more often. The post which ignited all this was the one thing which got me back into posting again as I felt I wanted to help and there was someone being very open about an element in their life where they were very confused about dealing with their emotions in respect to their thought processes. As I was starting to get back into things again it was closed down. I am finding the things which really interest me such as suicide and autistic thinking processes related to such issues are the ones which do get closed down. I am starting to come to the conclusion that possibly this forum is not for me. And I find that sad because I have never put up a single post asking for anything in my time as a member rather I come here to help others.

[Mannify]

I'd like to offer a parent's perspective, if that's ok. When I signed up to this forum it didn't really occur to me that I was signing up to anything but the usual mass parental moan, which I do think is a legitimate need for any parent, tbh, because parenthood can be such a neurotic experience whether ASD is present or not. Such forums can be handy for info, but they don't hold my attention for long. So, anyway, what I wasn't expecting was a life- affirming discussion of books, music and dismemberment (is there anything more life-affirming?). I've smiled a lot since I became a member on this forum, and I've rarely felt more accepted in any community, real or virtual. Such things might not seem very important, but they do offer a sense of belonging, and as such are actually a very serious function of a forum.

 

With regard to graver issues such as sex, suicide and mental anguish as related to ASDs, if such things cannot be discussed here, then where on earth can they be discussed, and with whom? I personally did not contribute to a thread which was closed down because not being male or having AS, I was unclear what I could possibly contribute. But I certainly didn't feel offended that such things were being discussed. A recent thread on the subject of suicide, I felt was sensible and constructive, yet that, too, was closed down. These things have led me to think that over-moderation is not the answer. An alternative might be the option to add a 'controversial' tag at the start of a thread so that anyone who might be offended can simply avoid it. With due warning, people may feel less inclined to complain about certain subjects. Moderators could also apply this tag if they felt it necessary, and it might be a preferrable response to closure of a subject. if you ignore the controversial warning, then your offense is in your own hands, so to speak.

 

Lancslad, your departure would undoubtedly be a loss. I have always valued your threads, and It's true that I have only recently made that known to you. I think that if that is true in my case, then there are probably a lot more ingrats out there who nonetheless gain a lot from your contributions. Beyond the more contemplative aspects of your posts, your further contribution is your regular presence, through which the 'belonging' element of the forum is felt. You undoubtedly do help a lot of people, whether or not their gratitude is visibly apparent.

[raydon]

I will try and give you my perspective on this. I am in my 60s and self diagnosed Aspergers earlier this year. I am in the process of having this assessed through the IAPT scheme and I am waiting to hear back from them. I have viewed this forum but never posted anything, as I have the same feeling here as I do entering a room full of strangers. Communicating with a single person is hard enough, to broadcast to a group (or courtesy of Google the world) is nigh on impossible. This is not a reflection on this group, I have the same issue in other groups as well. I am aware that there are some very understanding and helpful people here, but it is the unknown which is off putting. I have a lifetime of very vivid memories which I am now re-evaluating from an Asperger perspective. I would love to be able to share and possibly help others, but it is this very condition which makes it so hard. I feel very relieved finding out about Aspergers, certainly not ashamed, but I feel I have to be very careful what I say in an open forum, with all its possible implications.

[LancsLad]

Raydon thanks for you first post mate, I fully understand what you are saying. All I want to say is that experience is the most valuable element in understanding ASD far more improtant than text books or diagnostic labels. I note you are a little bit older than me and in my book that equates to having a bit more experience of life and as such I welcome your views because we are all learning at this game and I am sure there are many things I can learn from you.

 

Mannify thanks for your kind comments, and more importanly opinions and ideas. I am getting concerned that some people whoI greatly respect are posting less and less these days and at a personal level I am missing Chris so if you are still looking on I hope you are Ok Chris and your son continues to make good progress, because he has a good role model to follow.

[Sa Skimrande]

Raydon, I do from the bottom of my heart thank you for coming out and adding to this conversation, it is people like you that this ''disorder'', needs to hear from you in your youth or old age as others might see have a wealth of knowledge others might benefit from if they cast aside the psychobabble they have been imprisoned by !

 

You see everything that is known about this ''disorder '' comes from people who would like to make their name in treating people with this '' disorder'' are they for us or are they all for themselves, from experience I am inclined to think the latter as if you are not with this ''disorder'' how can you even dare to think how those with the label think, you have no experience beyond those who will say and of course what text books say but as we know as soon as something goes to print, it is old news as things have moved on since..

 

I was diagnosed by an aspie, an aspie who had made it in their field of educational psychology, I learned from them that they were diagnosed in their teens through college education and chose to devout their field of study to seek out the undiagnosed aspies in educational society. I do thank he greatly as he provided reason to some the madness I feel and I am sorely sorry if he is watching that I beat his Weschler adult intelligence scores, the first in eighteen years I was told and I did them with a raging hang over as at that time drinking to excess was a problem

 

But websites such as this seem to me to dwell on the woe is me for being diagnosed and poor parent for having such a deficient child, how wrong this website is in promoting such if it does come across that way but I do agree with Mannify this place really does need a reality check we are not all sweetness and light how quaint the aspie can do this, there is a very negative side which needs to be adressed as if those with this condition go unanswered by those that ask such questions how can they learn anything different ?

 

We need input, input from others aspie and NT alike we need this to form informed thoughts as make no doubts about it what we think others thoughts are an influence. If a website chooses not to help what use is the website other than a moan pot ? Now maybe it is some perhaps parents of would like to come here and moan but then if that is so, remember the woe is me, you are not alone, others may think the same, but what you might be forgetting, is any parenting is not without it's problems even with the so called NT. No one is trained to be a parent and I would guess a parent might be thinking they don't know it all and what they are advocating might be the complete wrong action and so they look to ''experts'' who might know better, but does academic qualification actually mean anything, have they successfully reared aspie kids to know anything, I believe there is no such thing, but we have to work together on this thing as every new born is totally different.

 

 

But ad finitium I believe in websites such as this if they are to be of any use to those with and those who care for, they really have to deal with reality as it is warts and all, for there really is no cuddly fluffy edges that is a thing of fantasy not reality and we need to be dealing with reality not fantasy, so if the software does not allow a private room for those affected who hav need of input, let the reality reign to e of use to everyone, the affected, parent and the so called medical professional if they desire to help as clinical studies achieve sod all in reality.

[Mannify]

I certainly think that to miss the chance of offering people the opportunity to talk about the issues which really concern them misses the potential, and maybe the point, of a forum such as this.

 

Can this thread be moved to the techie bit somehow, for the mods to read?

Edited October 1, 2012 by Mannify

[robert7111a]

I originally joined this forum to confirm my suspicions about having Aspie traits and to learn from people. It has been a source of great comfort and I like to believe I have found some friends here and maybe posted one or two helpful comments.

 

But I have found of late that I have been posting less. To a degree this is understandable because I won't post to a topic I have no interest in or know nothing about. Perhaps I've been biting my lip too and this is the reason. If I don't feel a post is appropriate, then I will most likely say something but clearly in the light of one or two recent threads which have been removed, perhaps this has got people thinking, has left a bitter taste and we have come to the conclusion that we just can't really be truly honest and open. There seems to be a thin line between what is judged inappropriate and somebody expressing genuine concerns. How can we have a truly open forum but moderate taboo topics?

 

Another topic that springs to mind recently was where I got shot down in flames for offering advice which I knew was correct ... instead I got accused on an open forum for being sarcastic and that my info was wrong - despite the fact I deal with the problem every day.

 

So this leads me to now question...what is the point of this forum if we can't be nice to one another and offer support?

[LancsLad]

Robert I get you are saying here, I would swop the word 'nice' for 'respect' personally. I do think the forum is reflective of what is happening in society. Asperger's as far as formal or self diagnosis is going from being a young person's condition to one which is rightly reflective of the fact that people of all ages are affected.

 

I believe as we move up the age groups we can see changes in attitudes which comes with maturity and experience. I would for example describe myself as reflective rather than reactive, but if I was to go back twenty years that would not have been the case at all, I think I might have felt very differently about my diagnosis and what it meant in respect to some of the difficulties I was facing in my life at the time.

 

In a similar vein being a foster carer taught me that there are great differences between sections of society and some individuals have it very tough because of life situations and experiences which can wreak havoc in their lives. I think as a community we have to recognise that just as kids might receive a diagnosis in their early school career as a result of experiencing difficulties in a new and testing environment. There are going to be many young adults getting diagnosis as a result of presenting with all sorts of issues such as suicide, self harm, eating disorders, depression, addiction, anti social behaviour, abuse etc... We might say that in an ideal world things should not get that far but we don't live in an ideal world. I have been lucky to have worked through some of these issues and come out of the other side. I am not bitter because a diagnosis and understanding this aspect of myself was never on my radar nor anyone else's, that was just what the times were like.

 

Today however we haven't got that excuse we have a rough idea of how ASD conditions affect people and some aspects of the condition are not pretty in respect to some individuals. I forum doesn't respect that then it is in a very sad place. We can't cherry pick the bits we want to that would be completely unfair. It might be the case that there is a temptation to do that because we are insular and want the condition to simply be reflective of ourselves or our child but that is selfish. That would be akin to me turning a blind eye to the effects of sexual abuse that has happened to a child in my care simply because I found it a bit uncomfortable and I have never experienced that type of abuse in my personal life. To take that approach would be absolutely devastating to that individual.

 

In a similar way when individuals come to the forum I don't think it is fair to take a similar line and tell them to go somewhere else. I ask how devastating must that feel? For sure there will be issues brought here that many feel uncomfortable with. There will also be individuals whose approach might not be the most respectful. But in my experience people tend to mirror our own emotional stance after a bit. I believe if we importantly acknowledge such individuals and recognise that the issues they bring to the forum are not easy for themselves to talk about, and that they are possibly at a motivated position in their lives where they want to seek out solutions then I believe we can all learn something. All too often what I feel is lacking is that level of respect from the forum in general. It is easy to look at new members but maybe we should look at ourselves first because that is the easiest thing to change.

 

At times I think people are often met with silence they put a post up and simply get 20 or 30 views with no response, how must that feel? Maybe as an individual we haven't got the answer to that particular issue, but is it not asking too much to respect the individuals and acknowledge them and say something such as "I guess it's not easy with having to deal with that". If I was to go through posts I think I could highlight where this does happen and it to me it seems to be pretty selective at times. Come on with a mother of a child or teenager and you get a sympathetic ear though sometime the issues are difficult. I think we have to recognise that when we get a 20 year old verbally lashing out that that person is someone's child and they have needs, it's just that they are in a different and possibly very difficult phase of their life and as a series of lifelong conditions the spectrum is broad and these individuals are just as much a part of it as anyone else.

 

Just a few thoughts.

[robert7111a]

Some very wise words there LancsLad.

 

But I agree, this forum should be about respecting others and valuing advice/views etc rather than making negative statements etc. This is particularly true for new members for whom perhaps one or two have come on with very aggressive, demanding, and what I personally thought, inappropriateness. But I agree, we are very quick to judge others who perhaps do have a very real need (despite the topic!) but if we (as a forum) should listen and accommodate that person, is there any point of forum rules then? Does this mean if I was in the state of mind that I wanted to go and harm somebody, could I post that here and seek advice and be immune from being reported?

 

You are right LancsLad, self moderation and reflection is a key, and positive trait in any one of us. I have certainly used self reflection recently and thought perhaps I could have said things in a slightly different way - or not got involved at all. But clearly some people cannot do this for themselves. Where do we draw the line (if any?). But if this was a "free-for-all", I would be rather worried should my daughter accidently come across one or two statements during a google search (for example, some of the content in the deleted thread).

 

Perhaps we could all do with a reminder as to what this forum is for and what it sets out to do? Is there a mission statement anywhere?

 

 

[SidiousUK]

I have to agree with Rob as I sometimes have to bite my lip when I see a topic or when I post.

One trait of my AS is a total lack of empathy, and at times I just want to say to people "get on with it" or "I am fed up of hearing about your kids"

 

I originally came here to see if anyone could help me manage aspects of my AS by using their posts as examples and trying to do the same.

 

I count some of the people here as "my digital friends" and I know that advise (whether I want to hear it or not) is never far away.

[indiscreet]

"Perhaps we could all do with a reminder as to what this forum is for and what it sets out to do? Is there a mission statement anywhere?" (robert 7111A)

 

I've always assumed that the forum was set up in the days before adult autism was recognized and that it's purpose was for parents to get advice/comfort from others with the same problems - and it's format hasn't changed in a way that would allow posters to concentrate on different interests and concerns.

 

"One trait of my AS is a total lack of empathy, and at times I just want to say to people "get on with it" or "I am fed up of hearing about your kids"" (SidiousUK)

 

Me too - although I haven't had the courage to say it.

 

I don't think it works to assume a cosy situation where we are all friends and willing to ask for and/or give advice on situations that we ourselves don't experience. Imagine that we could all meet up in real life. I'd put money on it that people would get into individual groups and talk about shared interests and concerns rather than all mix together - except, maybe, when the refreshments arrived.

 

 

 

 

[Sa Skimrande]

Well, one would think if any modicum of sense was applied that where Asperger's exists in children, it will also exist in adults unless of course common diagnostic thought is Asperger's only affects children, in which case there is the cure; age. But life is not that simple is it. But I do find it hard to believe a forum such as this was set up to help the concerned of children only, when it was that Hans Asperger himself noted in his initial group of patients the fathers of, that is adults had AS traits way back before his report describing the condition was made public in 1944 there indicating adults indeed had this problem too from then on and before.

 

As to whether modern researchers picked up on that all important fact pre 1991 following the discovery of Asperger's paper in the 1970's by Lorna Wing and there the naming of the condition after Asperger himself is another question, but Hans Asperger's actual paper was translated from German to English in 1991 so adult Asperger's was available to be recognised from then on at least, but if Lorna Wing back in the 1970's had successfully read Hans Asperger's article then she can't have failed to notice?

 

Then comes the DSM criteria where the fourth publication of 1994 was found to factually wrong by diagnosticians who had observed children and adults. Only the DSM-V scheduled for 2005/6 was to recognise the late diagnosed children and adults, but that came out when, this year ?

 

So maybe from this year at the very most adults with Asperger's may be recognised by those that only refer to the DSM criteria, which could mean from this year onwards we might see a change in our recognition, but I am not holding my breath, as the popular saying goes; follow the money.

 

But, some interesting light reading ;

 

Asperger's Syndrome Grows Up

[Lyndalou]

Excellent article SS!

[darkshine]

Is it just me or is it a common perception that too many on here are biting their tongue in what they want to say but feel they can't as;'' hey, everyone is looking'', open public forum accessible via search engines ?

 

If it is I just have to ask what use is this place if those affected cannot speak what is on their mind, ask what they need to know through fear of saying the wrong thing to be judged by others aspie and the empirical NT ?

 

Me, I don't care, I am an open book, I am a near middle aged adult who has learned if something needs to be said, then damned well say it as there is no room for private whispers, as they achieve nothing except promote yet more misunderstanding, and who does misunderstanding serve yourself or those who would like to have power over you, for make no mistake there are plenty who would advise the moon was truly made from cheese to get their own way.

 

The following is costing me to say it - both in speaking my mind, and the pain I feel while I write this.

 

I'm biting my tongue a lot - I have been in many ways for a long time - not because I feel people are looking in, but because of other reasons, some personal, some to do with the physical problem I have of typing right now cuz of hand and wrist pain, and some reasons are to do with the lack of something.

 

There's something missing here for me, something that doesn't strike me as firmly as it did before, for the last 6 months (at least!!) I have actually set out to avoid talking about autism because some of the replies back are so damn negative and soul destroying that I just can't face it - and because negativity is something that I am trying to deal with in my life I avoid talking about certain autism related topics.

 

I would like to clarify that previous paragraph... I am not worried about the negative impacts of AS per se and I am not afraid or screwed up over seeing depressing things or negative effects - what actually gets to me is the negative attitudes when attempting to discuss things and those reactions are like a slamming door on constructive discussion, conversation or debate.

 

I get to the point where (due to the pain involved in typing) I have to balance that with what I am prepared to give away - in any sense of the phrase - because to be brutally honest I have to look after myself too.

 

I have been mulling over the idea of calling it a day for a long time now - a very long time - but something stops me from going and I don't know what that is.

 

There's some people on here who talk to me behind the scenes and I find those conversations infinitely more valuable - those people know who they are - but it isn't whispers behind closed doors - it's frank, honest, constructive and fun discussions that achieve a hell of a lot and they add to my life in so many ways - I do not feel the same things or the same way about the actual forum itself in many ways - some days I cannot be bothered because to be blunt and say what I think causes hassle - there's a percentage of discussions where I could actually write what the responses will be before they even come in - and when something becomes predictable it can become stale and boring.

 

In addition, the whole moderator thing drives me insane - they don't answer questions, they don't look at things in different ways, they don't care about the suggestions that numerous people have put forward over the last year - and if the people who should be here doing a job of sorts have a "don't care" attitude for a lot of the time, then what exactly is the point? If members say things and other members agree and the admins and mods don't give a ###### then what is the point in them even being there other than to shut things down and make comments that at times in the past have been shallow, have showed a lack of understanding and a complete lack of commitment?

 

As a final thought... I think there's too many people who just moan moan moan - and some of us - yes I mean myself too - are actually trying to change, to learn, to improve, to have a life and it's damn difficult to even begin those discussions when they get overshadowed and buried beneath a load of stuff that has little use whatsoever. I have nothing against people having a moan - it can be healthy - but a lot of these moans are just replied to with things like "yeah but" and you know that the person who posted the thing aint listening to the thoughtful and constructive replies that they receive.

 

I think some of the older members (than me) with AS could teach people like me one hell of a lot - and I want to learn, I'm dying to learn, I want to learn so much that I could explode with the energy that drives me inside to learn, I could read what certain people say all day long every day for the rest of my life if it meant that I can continue to learn. I look at people older than me and I see hope and I see a chance of different things in my life - but how the hell can that happen when so many other people are just selfish?

 

And that's why I don't want to talk much on here about stuff that matters - because I don't want to be selfish, I want to give and receive and learn , but I am not just going to pi5s everything I have into the wind, and I know that sounds selfish, but as I said, there's another angle here where I'm trying to look after myself physically as well as mentally and emotionally, and giving it all away was destroying me because of the context, circumstances and surrounding where the interactions on here take place, and I'm tired of so much of it and I haven't recharged that aspect of myself.

 

So is my silence restrained? On the open forum yes it is, it's very restrained and I've broken it here because I figured that if there was a post on here appropriate enough to break my silence, it is this one.

 

Best

 

Darkshine

[indiscreet]

... I think there's too many people who just moan moan moan - and some of us - yes I mean myself too - are actually trying to change, to learn, to improve, to have a life and it's damn difficult to even begin those discussions when they get overshadowed and buried beneath a load of stuff that has little use whatsoever. I have nothing against people having a moan - it can be healthy - but a lot of these moans are just replied to with things like "yeah but" and you know that the person who posted the thing aint listening to the thoughtful and constructive replies that they receive.

 

You're right, of course, but sites like this are likely to attract people who have problems and aren't able to discuss them with professional support, or find that support inadequate and it's a fact that when a person is depressed, or desperate, they will appear to dismiss any suggestions on how to improve things. That's why I personally believe that it would be better to have aseparate section where those, like you, who want to change, learn and improve can interact with likeminded people.

 

I think some of the older members (than me) with AS could teach people like me one hell of a lot - and I want to learn, I'm dying to learn, I want to learn so much that I could explode with the energy that drives me inside to learn, I could read what certain people say all day long every day for the rest of my life if it meant that I can continue to learn. I look at people older than me and I see hope and I see a chance of different things in my life - but how the hell can that happen when so many other people are just selfish?

 

Again, that's true but do a substantial number of other posters feel the way you do? Too many have made it clear that they don't believe that adult diagnosis is a true diagnosis and that the parameters have been stretched unrealistically to include those people. Far from learning from us they are dismissive and resent any help we may receive as a result of diagnosis.

 

 

 

[indiscreet]

But, some interesting light reading ;

 

Asperger's Syndrome Grows Up

 

Thank you, this is a real find, but I'll have to digest it in small doses since it prints out as 36 A4 pages.

[raydon]

The following is costing me to say it - both in speaking my mind, and the pain I feel while I write this.

 

 

It has taken me 3 evenings of writing deleting writing deleting to get this far. I admire you who can write profusely and fluently, I have so many thoughts I want to convey, by the time I have started to write they change. I end up feeling frustrated and weary.

 

I am attracted by this forum partly because it is UK based, and also because there are some genuine people here. I find it very difficult if someone has an avatar and description which is clearly fake, which I have found on other forums. I want to communicate with the person not their alter ego.

 

I would feel more comfortable if there was a forum which excluded search engines and lurkers, where we could discuss issues on a more personal level and with respect for each other. It is all very well to theorise, but alot of negativity comes from trying to generalise. Apergers is such a vague description of an anomaly, one size definitely doesn't fit all, To have a diagnosis with accompanying support, must have a different outcome than being left alone to cope in ignorance. My experiences may be of use on a level of how not do to things, but also the thought processes and feelings behind them, and now the awakening.

 

I was diagnosed by an aspie, an aspie who had made it in their field of educational psychology,

 

To be able to discuss this with someone who is studying and living with it must be very interesting. The psychologist I have just come back from didn't even know the term "Neurotypical".

[Sa Skimrande]

You know as this topic slides down the page, I find it indeed interesting that no moderator has not seen fit to comment nor the owners of this website, is there a reason for this ?

Edited October 6, 2012 by Sa Skimrande

[darkshine]

You're right, of course, but sites like this are likely to attract people who have problems and aren't able to discuss them with professional support, or find that support inadequate and it's a fact that when a person is depressed, or desperate, they will appear to dismiss any suggestions on how to improve things. That's why I personally believe that it would be better to have aseparate section where those, like you, who want to change, learn and improve can interact with likeminded people.

 

I don't think a site like this will create something like that, because this forum and the people who "manage" it - they don't give a damn about that stuff - to be honest I don't even know why they continue at times, they say that its a place for supporting each other and talking about AS and all that jazz - but its flawed, the vibe of the place is seriously skewed at times.

 

Again, that's true but do a substantial number of other posters feel the way you do? Too many have made it clear that they don't believe that adult diagnosis is a true diagnosis and that the parameters have been stretched unrealistically to include those people. Far from learning from us they are dismissive and resent any help we may receive as a result of diagnosis.

 

Who knows if anyone feels like me - they can't be bothered to get involved in the discussion so I can't say - maybe their silence says enough eh? They have to answer that for themselves.

 

As for me - I really don't mind who has a dx or not, I have spoken to over a dozen people over the last year in PM who don't have "official diagnoses" and I don't mind - it is not my place to judge. All I can say is that I speak to a mix of people in PM, they are all different, they all have different circumstances, but they give me stuff and I hope I give stuff back, I wish that value could be extended to the main forum, but I sense it cannot - not on this forum anyway cuz there's too much bullshit, too much denial.

 

Anyone who speaks to me knows I struggle, I have a tendency to be negative, the stuff I've said is scattered all over these pages from the moment I first posted a message asking if I could post a post, I am aware of my journey shown in these pages. And from word go I have said that I wanted to learn, I haven't changed my goals, but I have changed.

 

I guess if people want to be dismissive of people like you then its their loss isn't it?

 

It is very difficult to avoid feeling negative at times.

 

It has taken me 3 evenings of writing deleting writing deleting to get this far. I admire you who can write profusely and fluently, I have so many thoughts I want to convey, by the time I have started to write they change. I end up feeling frustrated and weary.

 

I am attracted by this forum partly because it is UK based, and also because there are some genuine people here. I find it very difficult if someone has an avatar and description which is clearly fake, which I have found on other forums. I want to communicate with the person not their alter ego.

 

I would feel more comfortable if there was a forum which excluded search engines and lurkers, where we could discuss issues on a more personal level and with respect for each other. It is all very well to theorise, but alot of negativity comes from trying to generalise. Apergers is such a vague description of an anomaly, one size definitely doesn't fit all, To have a diagnosis with accompanying support, must have a different outcome than being left alone to cope in ignorance. My experiences may be of use on a level of how not do to things, but also the thought processes and feelings behind them, and now the awakening.

 

Yes, it could be so useful and proactive, we could all teach each other because between us we have a wealth of knowledge - unfortunately people don't always work together even when it could be in their best interests.

 

When I joined this forum it felt like I had to fight for a place on it - I don't know how real that feeling was - but at the time it felt very very real and I'm not the kind of person to give up, even when I'm really going through bad times, I get back up and carry on, but this place should be a community and it could do great things, but so many people just don't give a fcuk.

 

And in that sense I guess it at least gives us a taste of real life - just a shame that its a mirror on the world instead of something that could be so valuable and worthy and brilliant, a place that really helped people, really made a difference....

 

People have said in the past they are concerned about the negative view of autism this forum gives across - and it does - not because people might be angry or suicidal or their kids are struggling or whatever they may be - but because of a wider attitude that is basically quite shitty.

 

That is a real shame because I know I am not the only one who wants a better life and I think some new members see what its like here and they leave cuz of how it is - I have to ask myself if they are right to leave or if I am right to stay - either way, it says something that people join and don't stick around - I've spoken to a few few people in that category over the last year a half and a lot of them had stuff of real value to share... and they probably won't come back.

 

You know as this topic slides down the page, I find it indeed interesting that no moderator has not seen fit to comment nor the owners of this website, is there a reason for this ?

 

I said something very similar 4 days ago....

 

In fact I've said it several times before and only rarely have I received an answer...

 

Even via PM I waited 3 months for an answer to something forum related - I never got that answer, I then asked someone else, and again, did not receive a response - in both cases I was told that I would get one - I did not - that was 6 and 3 months ago respectively. I'm not interested any more in responses from the forum "team" because interval of silence has gone way beyond the point of there being any respect, commitment or interest from those people, despite assurances that they were committed and interested...

 

So I wouldn't hold your breath if I were you... you might get the beginnings of a conversation (as in a couple of brief comments that say very little) only for the other party to disappear very swiftly leaving you wondering where they went - its like magic

[raydon]

There's a poll over in the techie section about an 18+ section. Only 11 votes have been cast. It feels like a ghost town

[justine1]

Having not read through all the comments I do agree with some of what the OP says. I am a mum of five,two with ASD,even I don't always comment on everything to do with children or education. I cannot agree with every parent on here just like they won't agree with me.

 

There is a separate section on the forum "beyond adolecents" which people can stick to so as to avoid discussions mostly related to children. I may comment on beyond adolecent not because I have ASD but more because there are sometimes topics which I feel anyone can experience not just people with ASD,by commenting as an NT maybe it can reassure the person that this is not necessarily ASD related.

 

Personally I used to come on here a whole lot more but actually whilst some adults feel they cannot have their say,I feel the opposite as a mum and feel my points are not valid. To say I do not understand ASD is a bit out of order,whilst I cannot feel what my boys' feel I do know how their ASD affects them. I must say that my two boys' are so very different,if I asked a question on here about my 9yr old the advice may not help him but it may help my 6 yr old if and when he goes through the same.I don't thinking holding back what you say is exclusive to this forum rather for any forum to be honest,people are always bound to get lost in translation. I will also say that I don't think people should hold back (providing you are not being abusive) some people need to have positive and negative feedback, people mostly only what the positive but I do think it should be balanced. Adults with ASD make a huge contribution to the forum and I do wish more adults would comment on topics related to children,it can be reassuring for both parties knowing they have or are going through the same.

[Lyndalou]

In a lot of ways I don't think that I do 'restrain' myself on this forum. Yes, I do consider what I write and how I write it and think about who may read what I've written but it's no different to how I would consider what I would say to someone standing right in front of me. The only difference is that I can write (talk) freely about ASD when I really have to be careful about what I disclose about the subject in the 'real' world.

 

I have made no secret (rightly, wrongly and however naively this may be) of who I am and where in the country I live. If anyone wanted to figure out who I am then they'd have a lot to go on. The way I look at it is that I stand by what I've said and what my opinions are and I am entitled to my opinions. If anyone disagrees with what I say then that's their perogative. I will consider the viewpoints of others while holding true to my own beliefs. If people think I'm talking hogwash about my self-diagnosis and my experiences then I just tell myself that they have not experienced what is inside my head and have not been in my shoes when I've gone through my toughest times. They can think what they think and I'll think what I think. It's as simple as that.

 

I feel compelled to share my experiences. All the articles I read continue to confirm my belief in my self diagnosis. I continuously am astounded that my 'normal' is not the usual 'normal' and it's disconcerting and strange. I read the article that Sa Skimrande posted and I find myself thinking that it should be distributed to all the autism 'experts' across the country as it should be prescribed reading. This is about me. This is my life. I am not someone to be pitied. I am not someone to be condescended to. I have fought hard for my sanity and to understand myself over the years. It is important to share that we learn and we grow, we need to be told we CAN, not we CAN'T. I have experienced things that kids with ASD experience today. I've had chronic mental health issues for a very long time and it's been hard but I've got through and I've carved out a life for myself. I do not accept that the ASD youth of today should expect anything less and this is why I'd like to try to put forward a truthful and well-rounded picture of my life.

 

[Merry]

This thread is very interesting. Definitely food for thought. There are a lot of inspiring people here. It would be a shame if any left.

[karmadestiny]

Is it just me or is it a common perception that too many on here are biting their tongue in what they want to say but feel they can't as;'' hey, everyone is looking'', open public forum accessible via search engines ?

 

If it is I just have to ask what use is this place if those affected cannot speak what is on their mind, ask what they need to know through fear of saying the wrong thing to be judged by others aspie and the empirical NT ?

 

Me, I don't care, I am an open book, I am a near middle aged adult who has learned if something needs to be said, then damned well say it as there is no room for private whispers, as they achieve nothing except promote yet more misunderstanding, and who does misunderstanding serve yourself or those who would like to have power over you, for make no mistake there are plenty who would advise the moon was truly made from cheese to get their own way.

 

Does this website need a private room where those affected with this 'difference' can speak openly about what they need to get off their minds without judgement by those that cannot understand ?

 

I agree totally, the whole point of this forum is to help us support eachother and spread awareness and knowledge about the conditions we are all experiencing whether ourselves or through our loved ones...But in saying that it is also very important that our opinions are shared openly, honestly, without forcing our opinions on others, with respect and allow others to say there peace too...we are all adults here and should know the basic understanding of right or wrong...those that are climbing the ladder of adulthood should be given some leaway and allowed certain level of expression that does not impact on anothers rights...I think if too much red tape is attached to forums like this than those who are in need of support have nowhere to go...therefore the responsibility lies within all of us!