darkshine Report post Posted June 23, 2011 I stumbled across a video on Youtube the other day while looking for something unrelated to AS, as you do, anyway, it led to a link to Wrongplanet (I think) and then back to youtube in a chain of links.... Anyway, the short version is that it was a clip of a young woman talking about how people tell her that she can't be an aspie, and she goes on to tell the lengths she has gone to to create this image to the world etc and how she is an incredible actress.... So, I was thinking, cuz I have to do this to function in the world too (and always have had to as far back as I can remember) is this the way it has to be? To always act and only be yourself when hidden away? I don't think that shouting from the rooftops "I'm an aspie, so my behaviour doesn't matter" would work either. So is some balance required here? Balance between "how to be in society" and having an explanation (not an excuse) for when you can't be "normal" or do something that everyone else seems to do without all this extra processing? I find this so very confusing because I don't know what I'm supposed to be, or how I'm supposed to be, what I'm supposed to say, or what I am supposed to do!!! I know its wrong, but it seems so much easier to blame myself or blame and hate the world - because if I'm honest, it doesn't fit in with me as much as I don't fit in with it, Quote Share this post Link to post Share on other sites
philtfa Report post Posted June 23, 2011 I can certainly relate to this. I too 'act' in a way that I think I have to to get by in this world. Sometimes I get it right and sometimes I get it wrong. I too have been told that I can't be an Aspie because I'm so "normal" which means that I must be a good actor. But acting is such a major effort which I find, and other Aspies have said this also, extremely exhausting. And hard. It has got a little easier as I've got older. Also since diagnosis although I have a different way of looking at myself other people don't. For me it's a lonely and often bewidering world. But it doesn't matter because Aspies don't have feelings do they? Quote Share this post Link to post Share on other sites
KezT Report post Posted June 24, 2011 we all "Act" out roles throughout our lives. Personally I have to act pretty hard all the time at work - I find the rules there totally opposite to most of my personal beliefs and "normal" way of beahving. I spend quite a lot of my time at home "acting" the role of good parent. Most of the time I feel like giving them a slap round the face, scream very loudly & lock them in their room - but I act the role that I know is required of me and try not to do any of the above... The question is whether you can act the correct roles in the correct situation? The thing about ASD is the difficulty in recognising what role to play. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 Inherent within that is the assumption that non-autistic people don't have to 'act', don't have masks, and that assumption - according to text books - is wrong. (NB: Just scrolled down and saw KezT has already pointed this out). I think there is a question of degree, but I don't think that's as black and white as 'autistic people have to more', because I know some autistic people who are completely comfortable in their own skins (or at least appear to be) and many NT's who are completely neurotic/paranoid and spend their entire lives worrying about how others perceive them. Kez's other point - about the ability to match mask to situation - may be more relevant, but there's an inherent problem with that in that people attention seeking or looking for a social 'get out of jail free card' may well be inclined to adopt that mask as a means to an end. I do think this is happening a great deal these day among the 'aspi-rational' casual diagnosers who see the term AS as a badge (rather than a label!) that tells the world how creative, intelligent and off-the-wall they are and/or as a shi**y stick to beat their friends with when ever they want to assume the role of victim. As for You Tube videos, self-published books etc etc, ask yourself how many of the people producing this 'stuff' have something really new/useful to say and how much of it is just aspirations to Aspilebrity? I'm waiting for the first autistic X-Factor contestent whose 'act' consists of nothing more than telling the world how hard his/her life is and then riding the brief wave of patronising media coverage that follows. There was that tourettes guy on BB of course, but his star has long since faded (though that famous for being thick and emotionally retarded Nicky Graham who came second to him still pops up from time to time)... That may sound a little harsh, but if you think about it, the whole industry of autistic people talking about their experience of autism is one that's fairly unique in disability terms. That's not to say that their experiences are worthless, but by the same token it doesn't make them specifically 'valuable' either. A layman writing a book on 'human psychology' based purely on the premis that they were qualified to do so by dint of being human would be unlikely to find a publisher, or to get many hits on facebook. L&P BD Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 (edited) I can certainly relate to this. I too 'act' in a way that I think I have to to get by in this world. Sometimes I get it right and sometimes I get it wrong. I too have been told that I can't be an Aspie because I'm so "normal" which means that I must be a good actor. But acting is such a major effort which I find, and other Aspies have said this also, extremely exhausting. And hard. It has got a little easier as I've got older. Also since diagnosis although I have a different way of looking at myself other people don't. For me it's a lonely and often bewidering world. But it doesn't matter because Aspies don't have feelings do they? Not sure if anyone's interested but here's the clip I found (which is directly related to several things you have said too especially your final sentence "Aspies don't have feelings do they?" Aspies don't have emotions I am not sure what I think - fully - and it is hard to express into words - I just related to a lot of the things said in the clip. we all "Act" out roles throughout our lives. Personally I have to act pretty hard all the time at work - I find the rules there totally opposite to most of my personal beliefs and "normal" way of behaving. I spend quite a lot of my time at home "acting" the role of good parent. Most of the time I feel like giving them a slap round the face, scream very loudly & lock them in their room - but I act the role that I know is required of me and try not to do any of the above... The question is whether you can act the correct roles in the correct situation? The thing about ASD is the difficulty in recognising what role to play. I understand that there are roles to play in life and that people have different roles according to who they are with and where they are/what they are doing - but I find it really difficult to cope with that cuz it feels like everyone's lying all the time, and it feels like I'm lying all the time. I can't always act the correct roles in the correct situation - sometimes because I don't recognise what role I am supposed to play and sometimes because I run out of the ability to act (either because I am exhausted or because I just can't face it). Also it is very difficult (as you point out about your parenting example) when dealing with conflicting emotions/thoughts/feelings etc Inherent within that is the assumption that non-autistic people don't have to 'act', don't have masks, and that assumption - according to text books - is wrong. (NB: Just scrolled down and saw KezT has already pointed this out). First of all, I don't believe that is accurate, I am not assuming that non-autistic people don't have to act or have masks, what I was talking about is whether this is the way life has to be. I was also talking about acceptance, and the lack of it in my experience (bear in mind I was only diagnosed a few months ago so never viewed this from an ASD perspective). I find it totally exhausting having to jump through hoops and always having to pretend and wondered if this is the general experience out there. My post sub-title of ASD vs NT is purely intended to share the discussion with everyone and not limit the discussion purely to a one-sided AS gripe. (though that is part of it ) I think there is a question of degree, but I don't think that's as black and white as 'autistic people have to more', because I know some autistic people who are completely comfortable in their own skins (or at least appear to be) and many NT's who are completely neurotic/paranoid and spend their entire lives worrying about how others perceive them. Exactly Kez's other point - about the ability to match mask to situation - may be more relevant, but there's an inherent problem with that in that people attention seeking or looking for a social 'get out of jail free card' may well be inclined to adopt that mask as a means to an end. I do think this is happening a great deal these day among the 'aspi-rational' casual diagnosers who see the term AS as a badge (rather than a label!) that tells the world how creative, intelligent and off-the-wall they are and/or as a shi**y stick to beat their friends with when ever they want to assume the role of victim. I did say something similar to this is OP As for You Tube videos, self-published books etc etc, ask yourself how many of the people producing this 'stuff' have something really new/useful to say and how much of it is just aspirations to Aspilebrity? I'm waiting for the first autistic X-Factor contestent whose 'act' consists of nothing more than telling the world how hard his/her life is and then riding the brief wave of patronising media coverage that follows. There was that tourettes guy on BB of course, but his star has long since faded (though that famous for being thick and emotionally retarded Nicky Graham who came second to him still pops up from time to time)... That may sound a little harsh, but if you think about it, the whole industry of autistic people talking about their experience of autism is one that's fairly unique in disability terms. That's not to say that their experiences are worthless, but by the same token it doesn't make them specifically 'valuable' either. A layman writing a book on 'human psychology' based purely on the premis that they were qualified to do so by dint of being human would be unlikely to find a publisher, or to get many hits on facebook. L&P BD Maybe there won't be an autistic person doing that on the X factor - why would they? Its a singing competition!?!?!? but the program you've been watching on C4 does this to an extent, and there was a program on BBC 2 by Terry Pratchet who has Alzheimers talking about choosing to die. I am not a Youtube fan at all (well I like the clips of things that explode in a microwave ) but it has to be said that most of us cannot get a slot on television so I guess Youtube is a way for the average joe (or total wacko) to express themselves? This is how I found the clip - I was searching for "wrong emotions" which I thought was the title of the clip I was looking for (it was an OU programme on tv years ago so wouldn't be on the iplayer) - hence Youtube - I am not a regular Youtube user, and I don't go searching for things like this, I just found it interesting because I relate to the descriptions in the clip. I don't even really know why I watched it, curiosity I guess... I'm not sure whether people doing these vids have anything new to add or anything useful to say - I think the value of people's experiences are open to interpretation, depending on many factors. But lets face it - even this forum is full of posts of people sharing their experiences - you, me, others. Now I don't know if that is considered more valuable just because we didn't all share our lives and problems on Youtube instead of here? The industry of autistic people talking about their lives is no different to me than "normal" people sharing things about their lives, I don't see how a normal person talking about human psychology is a parallel example to someone with AS talking about acting? The proper parallel would be an "NT" talking about acting wouldn't it? Experience is experience, whether you are young, old, male, female, black, white, are on autistic spectrum, are "normal", or any of the other million and one things that make people different from each other. Now, maybe these differences are not so pronounced, but again, that is sort of the point about my OP, yes I have asked other questions around the topic for terms of discussion, but actually, the post was "behaviour and balance - ASD vs NT" which pretty much left things open for people to comment according to their experience of this. My topic was designed to be inclusive to everyone, not exclusive to ASD's, so that the discussion is balanced by the experiences of everyone. Regards Darkshine Edited June 24, 2011 by darkshine Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 The industry of autistic people talking about their lives is no different to me than "normal" people sharing things about their lives, I don't see how a normal person talking about human psychology is a parallel example to someone with AS talking about acting? The proper parallel would be an "NT" talking about acting wouldn't it? But there isn't an 'industry' of neurotypical people talking about being neurotypical based purely on the premis that they are neurotypical. Admittedly, there is more of a culture of 'being famous for being famous' these days, but this kind of celebrity seems to be short lived and for the most part regarded as what it is - inconsequential 'fluff'. But for the most part if people hand over money to go and see a neurotypical person 'speak' it is because the person speaking is bringing or demonstrating something interesting or unique - whether that be because they tell good jokes, or write good songs or have done something amazing or... early 'breaktrough' writers on autism like Donna William's were 'unique', and people like Temple Grandin continue to evaluate themselves and the autistic condition in a wider context, but there's a growing number of people doing what can only be described as a 'circuit' doing very little other than having a whinge about how hard it all is for them and reinforcing stereotypes that parents/carers want to hear that quite frankly I don't think they even fit unless they're really creative about it... Acquired autism, I call it, and whenever I think about it I get an image in my head of the old 'Tommy' movie poster ("put in your ear plugs, put on your eye shades, you know where to put the cork!") Not looked at your You Tube clip but I could probably hazzard a guess at who it is etc, and there's a lot of 'creative thinking' in the way she presents herself, exactly as you seem to have interpreted from the clip. She's rationalised her behaviours to 'fit' the stereotype she wants them to fit - possibly exaggerating them (subconsciously or consciously) in order to do so - which is pretty much what anyone who went to a private consultant could do to achieve a dx of AS. That doesn't mean the 'mask' is real, or that the reasons for applying the mask in the first place are... L&P BD Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 24, 2011 Not sure if anyone's interested but here's the clip I found (which is directly related to several things you have said too especially your final sentence "Aspies don't have feelings do they?" Aspies don't have emotions I am not sure what I think - fully - and it is hard to express into words - I just related to a lot of the things said in the clip. I also related to a lot of things said in the clip. I'm considerably older than that woman and I've been acting all my life and now it's automatic. If I ever feel "dishonest" in my dealings with other people I justify it by thinking that if I moved to a country with a different language and a different culture I would have to adapt to their ways in order to life a relatively normal and happy life. I dislike social kissing. If sometimes kisses me on the cheek I inwardly shudder. I've found that if I respond positively with a fierce hug it isn't so bad and afterwards I can surreptiously wipe the area they've touched. Better, surely, than hurting their feelings by letting them see I don't want them to touch me? Also, I dread social events where there are a number of people involved. Once a year my street has a 'party' where everyone brings food and drink and joins together for a 'fun' evening. It isn't to me. It hangs over me like a cloud in the weeks beforehand and on the day itself I feel the way some people regard going to the dentist. But I tell myself it's only once a year, take a deep breath and act. Afterwards I agree that it's been a wonderful evening and give silent thanks for the fact that it's over for another year. Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 (edited) Ok, as an adult with a dx of AS, my take on this is: you have to decide what you want from your life. If you want to live a largely solitary life then go ahead and be your undiluted autistic yourself, just being how you want to be...but don't then moan about living a largely solitary life! If, on the other hand, you would like a family, a job, a productive life that makes a decent contribution to your wider society, then yes, you will have to look at how other people behave, act and react, and then model that. I realised this when I was about 17ish, and have done it ever since with varying degrees of success depending on the circumstances. For example, I wanted/needed to work and this has probably been the largest area in my life where I have had to model my behaviour on others. Yes, it can be exhausting, I still don't really 'get' why I need to do a fair amount a lot of the time...but the reward of doing a job I love well far outweighs all of that. Conversely, I've given up now on trying to have close friends as I have never managed this successfully. I have my family, and a few work colleagues who I know care about me and that does for me. But that is my choice...I don't moan about having no close friends and blame it on ASD. So, as I said before, you have to decide what you want from life and adapt as best you can accordingly. IMO absolutely no point in moaning that it's an 'unfair NT world'...that's just the way it is, so best get cracking and enjoy the life you want Bid Edited June 24, 2011 by bid Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 24, 2011 so best get cracking and enjoy the life you want :notworthy: :clap: :clap: Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 :notworthy: :clap: :clap: Thanks Mumbley...I'm increasingly feeling very middle-aged as I appear to be very 'old school' these days!! Old school it may be, but I think there is a lot to be said for just getting on with things, taking personal responsibility and making the very best of what you have. Bid Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 24, 2011 Thanks Mumbley...I'm increasingly feeling very middle-aged You are 'very middle aged'. Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 You are 'very middle aged'. Rasp!! :P Bid Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 24, 2011 Rasp!! :P Gosh, didn't think you'd be able to read that comment with your middle-aged eyes... BTW, if we have lives to get on with, what are we doing on this forum... Quote Share this post Link to post Share on other sites
bid Report post Posted June 24, 2011 Gosh, didn't think you'd be able to read that comment with your middle-aged eyes... BTW, if we have lives to get on with, what are we doing on this forum... Do not jest...I'm holding out against varifocals at the mo!! Have to keep putting my specs on top of my head to sew/read as if I keep them on I'm holding things at arm's length!! And personally, I'm wiling away the time before my usual mad, 'late' dash to get ready for work! Bid Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 But there isn't an 'industry' of neurotypical people talking about being neurotypical based purely on the premis that they are neurotypical. Admittedly, there is more of a culture of 'being famous for being famous' these days, but this kind of celebrity seems to be short lived and for the most part regarded as what it is - inconsequential 'fluff'. But for the most part if people hand over money to go and see a neurotypical person 'speak' it is because the person speaking is bringing or demonstrating something interesting or unique - whether that be because they tell good jokes, or write good songs or have done something amazing or... early 'breaktrough' writers on autism like Donna William's were 'unique', and people like Temple Grandin continue to evaluate themselves and the autistic condition in a wider context, but there's a growing number of people doing what can only be described as a 'circuit' doing very little other than having a whinge about how hard it all is for them and reinforcing stereotypes that parents/carers want to hear that quite frankly I don't think they even fit unless they're really creative about it... Acquired autism, I call it, and whenever I think about it I get an image in my head of the old 'Tommy' movie poster ("put in your ear plugs, put on your eye shades, you know where to put the cork!") What does this have to do with my question? I'm afraid you've lost me... Maybe we should start another post on this subject, cuz there seems to be a lot you have to say about it... You seem to be making incorrect parallels between what I'm saying - I am not interested that she's autistic. I am interested in the topic under discussion - which also fully relates to NT's, cuz, as pointed out, they have to do this too. Not looked at your You Tube clip but I could probably hazzard a guess at who it is etc, and there's a lot of 'creative thinking' in the way she presents herself, exactly as you seem to have interpreted from the clip. She's rationalised her behaviours to 'fit' the stereotype she wants them to fit - possibly exaggerating them (subconsciously or consciously) in order to do so - which is pretty much what anyone who went to a private consultant could do to achieve a dx of AS. That doesn't mean the 'mask' is real, or that the reasons for applying the mask in the first place are... L&P BD How can you possibly comment on the clip if you haven't seen it? Or have you developed psychic powers you'd like to teach us all? And I haven't given my interpretation of the clip, just a couple of quick thoughts, this is because this post isn't an analysis of people who post on Youtube's behaviour, reasoning etc.... I don't care if she's lying or anything - the point was: she describes the issue in a way I relate to. So are you suggesting that she's read up about AS and then gone to toddling off to get diagnosed? Basically, other than acting and masks, which you seem to have got stuck on - I was also referring to certain behaviours that are difficult to self-control. Sometimes it feels like I'm walking around like a mannequin cuz I'm trying so hard not to move in an 'non-normal' way. Other times there are reactions to certain circumstance/events that my responses do not coincide with the expected social norms (just a couple of examples ) Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 If I ever feel "dishonest" in my dealings with other people I justify it by thinking that if I moved to a country with a different language and a different culture I would have to adapt to their ways in order to life a relatively normal and happy life. That, is a brilliant comment in my humble opinion because I understand straight away what you mean and it makes total sense. I wonder if I am living in the wrong culture sometimes - but maybe this is a "grass is greener" kind of thing I dislike social kissing. If sometimes kisses me on the cheek I inwardly shudder. I've found that if I respond positively with a fierce hug it isn't so bad and afterwards I can surreptiously wipe the area they've touched. Better, surely, than hurting their feelings by letting them see I don't want them to touch me? I feel the same way! I guess part of my gripe was that a lot of these things are continuously for other people (for various reasons) and to be frank, I find it very wearing and difficult, because this type of thing operates on so many different levels, from simple behaviours like walking or standing in a crowded room, to more complex situations like roles changes and conversations. I also related to a lot of things said in the clip. I'm considerably older than that woman and I've been acting all my life and now it's automatic. Yeah, I think she was about 24? I'm 30 - and this type of thing is still far from easy for me - and god isn't it exhausting!!! The thing for me that really doesn't help, is a running commentary in my mind pointing out how false and stupid a lot of these rules/roles etc are IMO, and so many just don't make sense either. Having said that, I can learn them - it's just that the list of things to remember gets very very long as time goes on Quote Share this post Link to post Share on other sites
KezT Report post Posted June 24, 2011 OK, back to the original question then: So, I was thinking, cuz I have to do this to function in the world too (and always have had to as far back as I can remember) is this the way it has to be?To always act and only be yourself when hidden away? Well, yes - that is what society is all about really. Otherwise you just have a bunch of self interested individuals who do thier own thing regardless of the impact on others. Some examples - clothes. Plenty of people wander round their own homes naked, but very few do the same when there are others around, even if it is nice and warm This is not because we think there is a soecific reason to be wearing clothes at all tikmes - we re just conforming to the rules. In the same way I wear ridiculously high heels if going to a formal event, even though I can't walk in them, don't like them, and would NEVER wear them out of choice.... Or eating. Now, I will be honst here. When alone, I eat my Kit-Kats (and my custard creams) by nibbling all the chocolae off, licking all the cream out of the wafers, then munching the wafers last. BUT when I'm a work, or in the park I just take proper bites. I like my way better, but I act in a "proper" manner just to please others Or, TBH, work. I quite lke my job, and I feel it is useful. But if I could be exactly who I wanted to be all the time, a lot of the time I would be a very lazy me, staying in bed, watching the TV, reading my book (slapping my kids).... certainly not geting up every morning, wearing uncomfotable clothes and driving across to te next county for apittance! I act out the role of the dedicated and loyal employee because I NEED to in order o fit in with the world as it is... Almost everything we do is an acted out role. If society/culture/religion did not exect us to do it, we probably wouldn't - although we'd all soon be knee deep in poop if we were just ourselves all the time Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 24, 2011 (edited) Ok, as an adult with a dx of AS, my take on this is: you have to decide what you want from your life. If you want to live a largely solitary life then go ahead and be your undiluted autistic yourself, just being how you want to be...but don't then moan about living a largely solitary life! If, on the other hand, you would like a family, a job, a productive life that makes a decent contribution to your wider society, then yes, you will have to look at how other people behave, act and react, and then model that........ So, as I said before, you have to decide what you want from life and adapt as best you can accordingly. IMO absolutely no point in moaning that it's an 'unfair NT world'...that's just the way it is, so best get cracking and enjoy the life you want Bid Edited June 24, 2011 by indiscreet Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 What does this have to do with my question? I'm afraid you've lost me... Maybe we should start another post on this subject, cuz there seems to be a lot you have to say about it... Hem hem...It was initially an indirect observation about your initial question, commenting on the 'you tube' aspect of autistic people telling the world about their autism, and took two paragraphs of my whole post... As you subsequently expanded that part of the topic with a reply running to eight paragraphs specifically on that part of my post I sort of assumed you wanted to head in that direction... But certainly the idea of wearing masks would certainly apply to someone wearing an 'autism mask' just as much to someone wearing an 'NT mask' wouldn't it? How can you possibly comment on the clip if you haven't seen it? Or have you developed psychic powers you'd like to teach us all? And I haven't given my interpretation of the clip, just a couple of quick thoughts, this is because this post isn't an analysis of people who post on Youtube's behaviour, reasoning etc.... I don't care if she's lying or anything - the point was: she describes the issue in a way I relate to. I didn't! I said i could 'hazzard a guess'... I've just looked at the clip, briefly, for the sake of argument and it's not actually the person I thought it would be, but having said that it might as well be because the content, the delivery, etc etc etc is all identical... So are you suggesting that she's read up about AS and then gone to toddling off to get diagnosed? No, I'm not suggesting anything - I couldn't possibly know... but if she's an 'Aspie' claiming to be able to 'do' neurotypical so perfectly that nobody can tell the difference, isn't it also possible that she could be - consciously or unconsciously - a neurotypical who was able to 'do' Aspie well? Isn't that actually more believable than the other way around? I mean, Dustin Hoffman played Kim Peek really well, and Sigourney Weaver did a pretty good Roz Blackburn impersonation, but if you asked me whether Kim peek could do a believable Dustin Hoffman or Roz could do a convincing Sigourney I'd say 'probably not'. Could this girl, if she wasn't on the spectrum, convince a dr she was? Absolutely! These days, with the definitions wide open, anybody who wanted to could! I'm not saying she has - I'm just saying she could... I inadvertenly left the window open on your link and heard her start crying and swearing... This within moments of telling 'us' that if she gets any teeny tiny part of a you-tube video wrong she does it again and wouldn't let us see it. Which can only mean she wanted us to see her crying, and she wanted us to hear her swear... You tell me, which mask seems more likely, to you... But - coming back to the original question: the assumption you make is that neurotypical people don't wear masks too, or, with reference to your latest post, that neurotypical people don't sometimes feel socially 'clumsy' or exposed, or don't feel compelled by social expectation to behave in a way that they don't naturally feel inclined to respond. Both of those assumptions, I'm pretty sure, are wrong. L&P BD Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 Ok, as an adult with a dx of AS, my take on this is: you have to decide what you want from your life. If you want to live a largely solitary life then go ahead and be your undiluted autistic yourself, just being how you want to be...but don't then moan about living a largely solitary life! If, on the other hand, you would like a family, a job, a productive life that makes a decent contribution to your wider society, then yes, you will have to look at how other people behave, act and react, and then model that. I realised this when I was about 17ish, and have done it ever since with varying degrees of success depending on the circumstances. For example, I wanted/needed to work and this has probably been the largest area in my life where I have had to model my behaviour on others. Yes, it can be exhausting, I still don't really 'get' why I need to do a fair amount a lot of the time...but the reward of doing a job I love well far outweighs all of that. Conversely, I've given up now on trying to have close friends as I have never managed this successfully. I have my family, and a few work colleagues who I know care about me and that does for me. But that is my choice...I don't moan about having no close friends and blame it on ASD. So, as I said before, you have to decide what you want from life and adapt as best you can accordingly. IMO absolutely no point in moaning that it's an 'unfair' NT world'...that's just the way it is, so best get cracking and enjoy the life you want Bid Hey bid I wasn't moaning that it's an unfair NT world - I was moaning about the whole world! Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 OK, back to the original question then: Well, yes - that is what society is all about really. Otherwise you just have a bunch of self interested individuals who do thier own thing regardless of the impact on others. Some examples - clothes. Plenty of people wander round their own homes naked, but very few do the same when there are others around, even if it is nice and warm This is not because we think there is a soecific reason to be wearing clothes at all tikmes - we re just conforming to the rules. In the same way I wear ridiculously high heels if going to a formal event, even though I can't walk in them, don't like them, and would NEVER wear them out of choice.... Or eating. Now, I will be honst here. When alone, I eat my Kit-Kats (and my custard creams) by nibbling all the chocolae off, licking all the cream out of the wafers, then munching the wafers last. BUT when I'm a work, or in the park I just take proper bites. I like my way better, but I act in a "proper" manner just to please others Or, TBH, work. I quite lke my job, and I feel it is useful. But if I could be exactly who I wanted to be all the time, a lot of the time I would be a very lazy me, staying in bed, watching the TV, reading my book (slapping my kids).... certainly not geting up every morning, wearing uncomfotable clothes and driving across to te next county for apittance! I act out the role of the dedicated and loyal employee because I NEED to in order o fit in with the world as it is... Almost everything we do is an acted out role. If society/culture/religion did not exect us to do it, we probably wouldn't - although we'd all soon be knee deep in poop if we were just ourselves all the time I like your examples Sometimes it is useful to hear a well grounded opinion Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 24, 2011 Hem hem...It was initially an indirect observation about your initial question, commenting on the 'you tube' aspect of autistic people telling the world about their autism, and took two paragraphs of my whole post... As you subsequently expanded that part of the topic with a reply running to eight paragraphs specifically on that part of my post I sort of assumed you wanted to head in that direction... But certainly the idea of wearing masks would certainly apply to someone wearing an 'autism mask' just as much to someone wearing an 'NT mask' wouldn't it? Yeah, but I thought that already..... No, I'm not suggesting anything - I couldn't possibly know... but if she's an 'Aspie' claiming to be able to 'do' neurotypical so perfectly that nobody can tell the difference, isn't it also possible that she could be - consciously or unconsciously - a neurotypical who was able to 'do' Aspie well? Isn't that actually more believable than the other way around? I mean, Dustin Hoffman played Kim Peek really well, and Sigourney Weaver did a pretty good Roz Blackburn impersonation, but if you asked me whether Kim peek could do a believable Dustin Hoffman or Roz could do a convincing Sigourney I'd say 'probably not'. Could this girl, if she wasn't on the spectrum, convince a dr she was? Absolutely! These days, with the definitions wide open, anybody who wanted to could! I'm not saying she has - I'm just saying she could... I inadvertenly left the window open on your link and heard her start crying and swearing... This within moments of telling 'us' that if she gets any teeny tiny part of a you-tube video wrong she does it again and wouldn't let us see it. Which can only mean she wanted us to see her crying, and she wanted us to hear her swear... You tell me, which mask seems more likely, to you... To the first part of this quote - let me get this straight - based on this - and other posts you have made: Are you basically saying that since autistic spectrum disorders have become more of a public knowledge, that as a consequence, certain individuals are using that (for whatever means)? And as such, a logical conclusion is that there is a certain degree of fashionability to being "an aspie"? This also suggests that certain individuals are using this diagnosis to gain something somehow? I am merely seeing if the impression you give across is accurate As for the second part - yeah I noticed that too - and I don't know which mask is true, maybe there can be so many you lose who you are... But - coming back to the original question: the assumption you make is that neurotypical people don't wear masks too, or, with reference to your latest post, that neurotypical people don't sometimes feel socially 'clumsy' or exposed, or don't feel compelled by social expectation to behave in a way that they don't naturally feel inclined to respond. Both of those assumptions, I'm pretty sure, are wrong. Can you quote me please on where exactly I said this? I have already said to you that I am not and was not making this assumption, I have pointed out that the topic in inclusive not exclusive, and I have also said that since I am only recently diagnosed and have felt like this for many years that technically I am approaching this from an "NT" position since my position on this has not changed one iota since diagnosis - so how exactly am I assuming that any issue I have may not occur for other people. I haven't BD and I would really appreciate it if you would 'listen' to what I have said Quote Share this post Link to post Share on other sites
baddad Report post Posted June 24, 2011 Yeah, but I thought that already..... To the first part of this quote - let me get this straight - based on this - and other posts you have made: Are you basically saying that since autistic spectrum disorders have become more of a public knowledge, that as a consequence, certain individuals are using that (for whatever means)? And as such, a logical conclusion is that there is a certain degree of fashionability to being "an aspie"? This also suggests that certain individuals are using this diagnosis to gain something somehow? I am merely seeing if the impression you give across is accurate As for the second part - yeah I noticed that too - and I don't know which mask is true, maybe there can be so many you lose who you are... Can you quote me please on where exactly I said this? I have already said to you that I am not and was not making this assumption, I have pointed out that the topic in inclusive not exclusive, and I have also said that since I am only recently diagnosed and have felt like this for many years that technically I am approaching this from an "NT" position since my position on this has not changed one iota since diagnosis - so how exactly am I assuming that any issue I have may not occur for other people. I haven't BD and I would really appreciate it if you would 'listen' to what I have said I'm going to make this a quick un as i'm very tired and haven't yet had anywhere near enough red wine for a Friday night and want to do some serious quaffing before bed! Answering your second question first: i thought the examples you gave at the bottom of your post: Sometimes it feels like I'm walking around like a mannequin cuz I'm trying so hard not to move in an 'non-normal' way. Other times there are reactions to certain circumstance/events that my responses do not coincide with the expected social norms (just a couple of examples ) were you offering examples of 'autistic' processes, and I was saying they weren't uniquely autistic. If I misinterpreted I apologise As far as the second (first) question goes - over/casual/diagnosis, aspilebrity etc, yes, that is what I think. I don't think it is necessarily a conscious thing, but I do think society is full of people who are 'needy' in one way or another and feel different, marginalised, out of step, confused, angry... the list is endless... I think a diagnosis of 'mild AS' can offer people feeling like that a level of reassurance and 'normalisation' and justication, validation and reinforcement that is hugely attractive to them, and that knowingly or unknowingly, they are psychologically compelled to embrace and sometimes actively to pursue. There really are very few negatives to a casually applied dx that is used 'as and when required or convenient' and an awful lot to gain. It can also be very reassuring for parents who suffer exactly the same kinds of anxieties vicariously for their children and, knowingly or unknowingly, 'project' their own psychological need/compulsion onto them. As 'AS' has become increasingly associated with 'quirky genius' stereotypes it has for some literally become 'Aspie-rational' - I mean, what's NOT to like about a dx that excuses and justifies every negative while simultaneously providing a massive great portion of smug superiority on the side. And even better, you don't even have to show your a freeking genius, because the dx means you're unable to demonstrate it L&P BD (heading for the winebox) Quote Share this post Link to post Share on other sites
philipo Report post Posted June 25, 2011 Just a rant but I disagree that ASD IS PUBLIC KNOWLEDGE.And if you were an underclass scrounger wanting to 'act' for the purposes of social security(sick) then it would be the worst 'disability' to use.Classic ,depression.schizophrenia,personality disorder etc would be much easier to act out.After all the nhs are still mostly oblivious to ASD.!!!!!Have you just got some exclusivity/class trip going on with you dx of aspergers?There's at least half a million undiagnosed!Perhaps you resent a perceived attack on your exclusivnesss and resent the great unwashed getting diagnosed,just like Dsylexia,at first the rich kids got diagnossis,the poor waited 20 years for equality to creep un on them. Another aspect is the hundreds of thousands of undiagnosed people with asd's who think that they just have an anxiety,confidence,learning problems,unaware that they use most of their mental energy just acting normal. Unitl I knew i had asd ,at 48yrs,I had been given 'sick for life' on two occasions due to walking difficultys,leg problems and severe anxiety,on both occasions I decided the miserable social security amount was a death sentence on me and my daughter and returned to monotinous factory work,despite being a good mechanic/electrician.musician,but,no secondary education.I must have been stupid,econonimaccly.I could have collected loads of benefits but being an asd job was not really up to understanding my forms and benefits,let alone how duplicitous and sneaky the nt world is with languague!I was undiagnosed then of course. Acting nt !!!what does it mean.I feel that nts do social coercion,not acting,and that they are heaviliy influenced(far more than asd'rs and people with perceptual 'problems') by trash tv ,pornographic media and a low set of common denominators in order for them to feel part of the temporal culture.I>E>Mostly prgrammable robots who will easily take the country to war,or indulge in economoic wrecklessness,or develop massive drug,alchohol.eating disorders,because the nt mantra of television and perceived opinion 'allows' them to,who's high cultural points revolve round empherial fiction ,like tv and film n newspapers.e.g.The country joins in the slaughter of over 300,000 Iraqui civillians and we become flag wavers just for oil.are these same nt qualities the ones that ASD'rs should trust? I'm amazed that Asd jobs are now part of 'reality' tv,where all the subjects are pre selected and the filming is heavily edited and comprises of the ususal bunch of sellable qualities,like children/disabilities.NOW ITS ENTERTAIMENT!!Did the film company give the profits to the NAS?I doubt it. It may be that in the future disability forums will seperate into one type that concerns mainly adults who have recently been 'diagnosed' and all the ones based round children with asd's ,and that as usual,same as dyslexia before it ,only the posher kids will get the diagnosis and help.The problem will only be resolved through awerness and MONEY. Cling to your Aspergers,your hfa or your autisism.Some things are very clear but ASD is not one of them,however the nations are very clear,economic exploitation,porn and violence and controlling of the populus through media is a clear ever increasing certainty. Acting ASD!!!!what an absurdity. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 25, 2011 Just a rant but I disagree that ASD IS PUBLIC KNOWLEDGE.And if you were an underclass scrounger wanting to 'act' for the purposes of social security(sick) then it would be the worst 'disability' to use.Classic ,depression.schizophrenia,personality disorder etc would be much easier to act out.After all the nhs are still mostly oblivious to ASD.!!!!!Have you just got some exclusivity/class trip going on with you dx of aspergers?There's at least half a million undiagnosed!Perhaps you resent a perceived attack on your exclusivnesss and resent the great unwashed getting diagnosed,just like Dsylexia,at first the rich kids got diagnossis,the poor waited 20 years for equality to creep un on them. Another aspect is the hundreds of thousands of undiagnosed people with asd's who think that they just have an anxiety,confidence,learning problems,unaware that they use most of their mental energy just acting normal. Unitl I knew i had asd ,at 48yrs,I had been given 'sick for life' on two occasions due to walking difficultys,leg problems and severe anxiety,on both occasions I decided the miserable social security amount was a death sentence on me and my daughter and returned to monotinous factory work,despite being a good mechanic/electrician.musician,but,no secondary education.I must have been stupid,econonimaccly.I could have collected loads of benefits but being an asd job was not really up to understanding my forms and benefits,let alone how duplicitous and sneaky the nt world is with languague!I was undiagnosed then of course. Acting nt !!!what does it mean.I feel that nts do social coercion,not acting,and that they are heaviliy influenced(far more than asd'rs and people with perceptual 'problems') by trash tv ,pornographic media and a low set of common denominators in order for them to feel part of the temporal culture.I>E>Mostly prgrammable robots who will easily take the country to war,or indulge in economoic wrecklessness,or develop massive drug,alchohol.eating disorders,because the nt mantra of television and perceived opinion 'allows' them to,who's high cultural points revolve round empherial fiction ,like tv and film n newspapers.e.g.The country joins in the slaughter of over 300,000 Iraqui civillians and we become flag wavers just for oil.are these same nt qualities the ones that ASD'rs should trust? I'm amazed that Asd jobs are now part of 'reality' tv,where all the subjects are pre selected and the filming is heavily edited and comprises of the ususal bunch of sellable qualities,like children/disabilities.NOW ITS ENTERTAIMENT!!Did the film company give the profits to the NAS?I doubt it. It may be that in the future disability forums will seperate into one type that concerns mainly adults who have recently been 'diagnosed' and all the ones based round children with asd's ,and that as usual,same as dyslexia before it ,only the posher kids will get the diagnosis and help.The problem will only be resolved through awerness and MONEY. Cling to your Aspergers,your hfa or your autisism.Some things are very clear but ASD is not one of them,however the nations are very clear,economic exploitation,porn and violence and controlling of the populus through media is a clear ever increasing certainty. Acting ASD!!!!what an absurdity. Hi Philipo. Rant or no, I take it you jest about autism's 'profile' and public perception? Autism is a huge growth industry - I would speculate that we have seen more representations of autism on TV in the last few years (both 'real' in documentaries etc or as characters in films) than pretty much all other disabilities put together, and this almost exclusively at the 'High Functioning' or 'AS' end of the spectrum. Diagnosis has literally gone through the roof - both speculative and actual diagnosis - and the amount of books on the subject (whether unreliable but compelling fiction like 'The strange case' or in the latest outpourings from Jessica Kingsley) increases daily. Then of course you have all the 'cure' industries that offer themselves as the alternative to those negative monsters at the NHS or the psychologists who - no dx necessary - are happy to offer counselling sessions to women identifying themselves as victims of the 'Cassandra' effect because they lack the basic common sense to realise that men and women do think differently about different things and that it is entirely natural that they do so... Tell me, when did you last see a facebook app where you could test yourself to see if you are scizophrenic or psychotic, and where the results of such tests would actually be taken seriously as an indication that either you were or that you should seek further clarification? You seem to have mistaken my observation that people can have reasons for identifying themselves as 'mild AS' with the concept of access to benefits and social security scrounging. I think this is certainly one possible motivator, but in the case of adults far from being the only one or even a prime one. You also seem to have misunderstood my 'claim to exclusiveness' - I have never claimed to be autistic on this forum or any other. In fact, if I were autistic I would be loath to admit it on a forum such as this these days - Not because of any sense of 'shame' or value judgement but because increasingly I find it impossible to identify what some people are calling 'AS' as the same thing that profoundly affects the life of my son or any of the other autistic people I know or have cared for. And before you jump on that as an admission of some sort of 'exclusivity' agenda my only desire in keeping autism as a 'label' for those with autism is that I think not doing so will be detrimental to the entire autistic population, because the meaning of 'AS' is being diluted to such a degree that it is (if it hasn't already) effectively, becoming meaningless. I mean, we're 'all on the spectrum somewhere', ennit... One final point: AS has ceased for most SS departments to be a 'recognised' condition needing support and access to support. Under DSM V that term will disappear. Logically, what's the next step? Don't shoot the messenger, mate, even if you don't like the message. L&P BD Quote Share this post Link to post Share on other sites
philipo Report post Posted June 25, 2011 I see your pointsBADDAD, the media will naturally focus on the hfa as without a script is woul'nt make good ENTERTAINMENT which is what tellys about.The danger of throwing out the baby with the bathwater is a very real and present danger.New classifications will mostly for the benefit of institututions rather than individuals and while I feel old labels have had their day it's obvious that parents/sufferers should be wary and not let go of older defintions that have served the subject in its earlier days.As with popular bhuddism and healing by crystals,as well as politics and the latest i-pads and recycling plastic n rubbish,we should be wary that a short term approach will be at all helpfull. SCROUNGERS>>>>>>>>>>>Are you aware how difficult it is to get a diagnosis without money,even if you've been stark raving asd bonkers for years!!!Do really think a doctoer or nhs/dhs official is mostly in a position to help you?Let alone give you a diagnosis so you could screw a few more lira out the social seurity?What is known about nt's is they are generally sociopaths and judging by their constant misuse and abuse of languauge and a general tendency to always seek financial gain ,yes,I agree there will be a few carpet baggers.although no doubt the physically idle and extra educated higher classes are in a better position to take better advantage of the system than the ones who just get dismissed as workshy because they have working class accents.Autisim is a huge growth industry......yes but not on the crappy housing estates or other economic reservations,it's more another coffee table awareness from the families that have the money for private diagnosis,get with the reality..RICH versusPOOR people,and the ability for equality in education and oppertunity and diagnosis. ps dont do facebook ,its for saddos too scared to have normal relationships with heighbhours etc..As for popularism I'm sure more people are bothered about x factor winners and Cyrsis2 than all the dead kids in Libyia or people with 'autisim'. Your last bit,what is the next step? Its jobclub compulsory.......hfa and aspergers has just been defiled by the ss so get used to it.I will be headin in a class war direction and killing my own food. Quote Share this post Link to post Share on other sites
Mumble Report post Posted June 25, 2011 ps dont do facebook ,its for saddos too scared to have normal relationships with heighbhours etc.. I'd be grateful if you would temper your sweeping and often crass generalisations. Quote Share this post Link to post Share on other sites
philipo Report post Posted June 25, 2011 I'd be grateful if you would temper your sweeping and often crass generalisations. Quite right mumbles and i apoligise,I'm just saying we should all be carefull of our own media activities and propoganda,like just cos it's on youtube its not neccesarily an alien or just cos facebook has millions of subscribers we should'nt take the veiw that refering to facebook is a reliable indicator,most of it is inane chit chat,in only my opinion of course. Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 25, 2011 Autism is a huge growth industry - I would speculate that we have seen more representations of autism on TV in the last few years (both 'real' in documentaries etc or as characters in films) than pretty much all other disabilities put together, and this almost exclusively at the 'High Functioning' or 'AS' end of the spectrum. Diagnosis has literally gone through the roof - both speculative and actual diagnosis - and the amount of books on the subject (whether unreliable but compelling fiction like 'The strange case' or in the latest outpourings from Jessica Kingsley) increases daily. Of course, it's a growth industry. Only now are those who have, unknowingly, been on the spectrum all their lives coming forward to ask to be tested to see if this is the case. It seems logical if 1 in every 100 young people are on the spectrum the same must apply in earlier generations. I have never claimed to be autistic on this forum or any other. In fact, if I were autistic I would be loath to admit it on a forum such as this these days - Not because of any sense of 'shame' or value judgement but because increasingly I find it impossible to identify what some people are calling 'AS' as the same thing that profoundly affects the life of my son or any of the other autistic people I know or have cared for. Have you considered that before autism and/or Asperger's was 'discovered' people learned that the only way to live a reasonably tolerable life was to 'fit in' with those around them - even if this meant faking and acting? And before you jump on that as an admission of some sort of 'exclusivity' agenda my only desire in keeping autism as a 'label' for those with autism is that I think not doing so will be detrimental to the entire autistic population, because the meaning of 'AS' is being diluted to such a degree that it is (if it hasn't already) effectively, becoming meaningless. I mean, we're 'all on the spectrum somewhere', ennit... But you are not on the spectrum and only looking at things from the prospective of a concerned outsider i.e. the father of someone who is but you can't get inside his head or the head of anyone else any more than I can. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 26, 2011 Based on the examples at the bottom of my OP were you offering examples of 'autistic' processes, and I was saying they weren't uniquely autistic. If I misinterpreted I apologise No! in short. I wasn't offering examples of 'autistic' processes, I was offering an example that I have struggled with for years, which is the movements of my arms, this was never an issue until secondary school when differences were suddenly seen as "bad". From that point on I constantly make sure that they are still, and not waving around in ways that appear strange to people. They often ache from the effort of keeping them in supposedly normal positions. I only heard of the term "flapping" about 3 months ago!!!! Now, the main times I don't have to worry about this is when I am in private - thereby forcing me to 'act' (as in control behaviour) in public, this takes concentration to do (along with a thousand other things that are crucial to remember in order to maintain said illusion of public normality). Not only does this use a lot of my mind, it is very exhausting as it is all a continuous checklist of things to do/not do. If this satisfies you enough for the apology to stick, then I accept it gracefully. Quite often BD It's almost like you are suggesting that I get dx in feb, and then read up on autism and suddenly start acting like this... I have only looked into Asperger's/Autism further since diagnosis not before so I was not consciously or subconsciously fitting in with any criteria. I am still exactly the same as I was before - except now, the things that make me different has a name, it can be looked into, learnt about so that ways to deal with things can be thought about, it explains things but isn't necessarily the cause of things, it doesn't make life better or necessarily worse, but maybe I can learn now I know what I am dealing with... But. How do adults go about teaching ourselves what should have been taught many years ago? Some of us did not have parents with open-eyes. Did not have parents who were willing to take the time to try and understand. At age 30 it feels very demeaning to admit to the kinds of problems I have. I am ashamed of myself. I never wanted a label attached to me and I don’t want to be pigeon-holed. But at the same time, if I had the knowledge to fix my problems - I wouldn’t be asking people… It is very easy for people to say "decide what you want and get it" but I do not know how to do that. It is somewhat difficult to use positive reinforcement on an adult, and even more difficult to apply to oneself. So what would you have us do then? Those like me? People who did not go trawling the internet looking for the popular disorder of the year. People who did not ask for a diagnosis. And I did not ask for it. I didn’t chase this or seek it out. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 26, 2011 Based on the examples at the bottom of my OP No! in short. I wasn't offering examples of 'autistic' processes, I was offering an example that I have struggled with for years, which is the movements of my arms, this was never an issue until secondary school when differences were suddenly seen as "bad". From that point on I constantly make sure that they are still, and not waving around in ways that appear strange to people. They often ache from the effort of keeping them in supposedly normal positions. I only heard of the term "flapping" about 3 months ago!!!! Now, the main times I don't have to worry about this is when I am in private - thereby forcing me to 'act' (as in control behaviour) in public, this takes concentration to do (along with a thousand other things that are crucial to remember in order to maintain said illusion of public normality). Not only does this use a lot of my mind, it is very exhausting as it is all a continuous checklist of things to do/not do. If this satisfies you enough for the apology to stick, then I accept it gracefully. Quite often BD It's almost like you are suggesting that I get dx in feb, and then read up on autism and suddenly start acting like this... I have only looked into Asperger's/Autism further since diagnosis not before so I was not consciously or subconsciously fitting in with any criteria. I am still exactly the same as I was before - except now, the things that make me different has a name, it can be looked into, learnt about so that ways to deal with things can be thought about, it explains things but isn't necessarily the cause of things, it doesn't make life better or necessarily worse, but maybe I can learn now I know what I am dealing with... But. How do adults go about teaching ourselves what should have been taught many years ago? Some of us did not have parents with open-eyes. Did not have parents who were willing to take the time to try and understand. At age 30 it feels very demeaning to admit to the kinds of problems I have. I am ashamed of myself. I never wanted a label attached to me and I don’t want to be pigeon-holed. But at the same time, if I had the knowledge to fix my problems - I wouldn’t be asking people… It is very easy for people to say "decide what you want and get it" but I do not know how to do that. It is somewhat difficult to use positive reinforcement on an adult, and even more difficult to apply to oneself. So what would you have us do then? Those like me? People who did not go trawling the internet looking for the popular disorder of the year. People who did not ask for a diagnosis. And I did not ask for it. I didn’t chase this or seek it out. Darkshine, you have interpreted my general observations far too personally. I'm not suggesting anything about 'you' - I don't know you at all, or anything about how you were diagnosed. You could be the most autistic person on the planet, or you could just be someone who saw 'the breakfast Club' as a kid and thought 'Hey, that Ally Sheedy character seems just the persona for me' and ended up painting yourself into a corner with it... Don't personalise anything I post, because if you do it becomes impossible to talk rationally about it. L&P BD Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 26, 2011 Darkshine, you have interpreted my general observations far too personally. I'm not suggesting anything about 'you' - I don't know you at all, or anything about how you were diagnosed. You could be the most autistic person on the planet, or you could just be someone who saw 'the breakfast Club' as a kid and thought 'Hey, that Ally Sheedy character seems just the persona for me' and ended up painting yourself into a corner with it... Don't personalise anything I post, because if you do it becomes impossible to talk rationally about it. L&P BD Maybe I have BD, but it is a theme I am coming across more and more, I can't help personalising some of the things people say because the feeling I get (rightly or wrongly) is that adults who have been recently diagnosed are... I don't know the words... Its like I feel that I have to justify myself. Its like I have to explain things. Its like this because of several things, but in the main, because I am an adult, because of the changes (increase) in knowledge of ASDs, and for a number of the reasons you have pointed out in relation to these factors (a lot of which is in this discussion). You've also said about a new AS and the old version - I'm guessing this is related to parts of this discussion too - although I don't understand fully what you mean. The reason this is important is because if people think I'm some massive faker or someone like you describe who seeks this out, well, then people don't take what you have to say as being of any significance do they? And as such they respond accordingly. As you point out, you don't know me, but the way you talk suggests the things that I approached in my last reply - is it inconceivable for me to want to set the record straight? I suppose the key question from that reply (taking out any personalisation) would be in the last 2 paragraphs (beginning with "But. how do adults..." and "At age 30...") Even if I do make the mistake of taking it personally (and its hard not to when you say things!!!) I feel that I can still be rational about the discussion. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 26, 2011 (edited) Maybe I have BD, but it is a theme I am coming across more and more, I can't help personalising some of the things people say because the feeling I get (rightly or wrongly) is that adults who have been recently diagnosed are... I don't know the words... Its like I feel that I have to justify myself. Its like I have to explain things. I don't think it's just adults who are being inappropriately diagnosed these days, and I don't think it's because of increased knowledge about ASD's... I think it's about an increasingly widening spectrum that catches anyone who doesn't seem to 'fit' any other readilly identifiable condition, or is tacked on to the end of some other diagnosis purely to tie up any loose ends. There have been precedents in the past (dyslexia and ADHD come straight to mind, but there have also been physical medical conditions - glue ear and tonsilectomy for example - where 'industries' surrounding the conditions develop) and i'm sure there will be again. We have situations now - and you can read them on this forum - where people have had it suggested to them by a TA or nursery nurse or 'dinner lady' that their child is a 'bit spectrummy' and parents have then pursued a dx on that basis. Not they have seen doctors to find out what, if anything is wrong with their child but they have decided their child is on the spectrum and sought confirmation of it - often rejecting the opinions of several professionals who have rejected the idea along the way before finding the (usually private) consultant who finally agrees with them. The nature of those final consultation has quite often been pretty dubious too - the consultants sometimes even effectively diagnosing by phone and asking the parents to pop in with the cash and pick up their letter of confirmation... Exactly the same applies to adults, with many 'first becoming aware' after filling in a facebook app their friend sent them or after reading an article on autism and deciding that was them (or their boyfriend) too a T... As I say, that's not directed at any individual, but that is how things have gone in the past decade or so and it is a huge, money spinning industry that has very little to do with 'missed diagnosis' as indiscreet suggested and much more too do with the kind of 'woo' that people will by into these days because they feel disorirentated by life. AS has reached the masses through the same kind of twaddle and cod-psychology that has been selling books and filling village halls with accolytes waiting to listen to self-help gurus pontificate since the eighties... Sorry for anyone offended by that, or has taken that generalisation on a personal level and feels 'tarred with the same brush'... but we are talking about a disability here, and i think that what 'disability' means is also being trivialised, to the detriment of an already disgustingly marginalised and disnfranchised disabled community. If anyone is comfortable that the definition I've offered above doesn't fit them then they really shouldn't take offence. If they're worried it does or that it might they maybe need to look again until they can make their mind up one way or the other. In either case, they shouldn't blame ME for what is or for not liking what is - because I've been voicing my opinions against it for years now and i'm not the problem! L&P BD Edited June 26, 2011 by baddad Quote Share this post Link to post Share on other sites
baddad Report post Posted June 26, 2011 (edited) Of course, it's a growth industry. Only now are those who have, unknowingly, been on the spectrum all their lives coming forward to ask to be tested to see if this is the case. It seems logical if 1 in every 100 young people are on the spectrum the same must apply in earlier generations. It does if you make all sorts of assumptions (that the 1 in a 100 being diagnosed actually are, that autism isn't actually on the increase and that the only change is down to improved diagnostics, that theories postulating a 'degenerative genetic presisposition' (i.e. one that gets 'stonger' with each successive generation) and/or environmental changes/triggers/factors etc etc etc etc) are all wrong... Don't get me wrong, i'm not saying for a moment that there aren't autistic adults who were not diagnosed in the 70's/80's/90's etc, but I do have powerful doubts about the numbers now supposedly being revealed and the medical 'contexts' (i.e. 'High Functioning Asperger's, 'Asperger's traits' etc etc etc) revealing them. Have you considered that before autism and/or Asperger's was 'discovered' people learned that the only way to live a reasonably tolerable life was to 'fit in' with those around them - even if this meant faking and acting? And have you considered that that applies to everyone? The point is, where is the 'line', and who is drawing it. 30/40 years ago it was too far in one direction, I now believe emphatically it has gone too far the other way... But you are not on the spectrum and only looking at things from the prospective of a concerned outsider i.e. the father of someone who is but you can't get inside his head or the head of anyone else any more than I can. This is a 'gainsay' argument. A neurotypical could equally argue (and one, a psychologist and the author of a supposed best seller about autism that frankly I consider so much 'woo' did, on this very forum to our autistic members) that autistic people are genetically dredisposed NOT to have insight into other people with autism because they lack the empathy to do so... I don't believe either of those things, BTW: I think autistic people and NT's can be equally insightful about others and/or equally 'blinkered' depending on circumstances, personality and all sorts of other factors. I'm the first person around here to admit that 'Parent's know their children best' is an incredibly unreleliable piece of twisted logic, and conversely I'm also arrogant, hypocritical and smug enough to say that IN MY CASE it's true! (Actually, I'm not that arrogant, hypocritical or smug, but I didn't want to undermine the comic effect /timing of saying it... I'm just arrogant, hypocritical and smug enough to say it's mostly true in my case, and it's been that margin of doubt that has provided me with the ability to listen and take advice when I have been wrong, and that will hopefully serve me well again in the future if I'm wrong again.) L&P BD Oh PS: I don't know if it's just good old healthy paranoia, but I have found myself wondering occassionally, in the manner of a bacofoil hatted conspiracy theorist, recently whether the increase in 'woolly' diagnosis etc could be providing something of a smokescreen, and if so to cover what? I mean, just say there was a massive increase in autism in the past couple of decades that wasn't due to improved diagnostics but to something else, something environmental or in the food chain or something like that. And say the potential backlash to that discovery was big enough to topple governmments, agricultural and medical industrial giants, economies, etc etc etc... what would be the most effective way to deal with that? One way would to be to create a whole huge pool of people who shared the same 'diagnosis' but not the same 'trigger'... It is, of course, all just conspiracy theory rubbish... I'm just having a laugh... that's the kind of woo that makes the rest of the autism woo look decidedly unwoolike... Edited June 26, 2011 by baddad Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 26, 2011 Sorry for anyone offended by that, or has taken that generalisation on a personal level and feels 'tarred with the same brush'... but we are talking about a disability here, and i think that what 'disability' means is also being trivialised, to the detriment of an already disgustingly marginalised and disnfranchised disabled community. Well thanks I guess for sharing you opinion (on the whole matter not just the above quote) My issues with taking things personally has been a lifelong deep-seated problem. Basically BD (and anyone else following this snippet of conversation) I know I have a problem with taking things personally: which as I see it gives me choices. I can either blow up (which would be my error not yours) or I can ask you to clarify further in order to try and work out why the things you say bothers me I don't think any disability should be trivialised - when the disability is real Having said that - a previous discussion was about enabling people not disabling them - so again - I have discussed this further to try and understand what you (and you plurally) mean... I find so many things about these discussions (on the forum) downright confusing because on one hand I see people tell others to essentially shut up and get on with it, and on the other see things where major problems occur that have to be dealt with. I don't understand how it can be both answers yet, I am slowly understanding a little, but I could not explain these things if someone else asks because I do not understand, so therefore there is more I have to learn. If anyone is comfortable that the definition I've offered above doesn't fit them then they really shouldn't take offence. If they're worried it does or that it might they maybe need to look again until they can make their mind up one way or the other. In either case, they shouldn't blame ME for what is or for not liking what is - because I've been voicing my opinions against it for years now and i'm not the problem! Your are right, you are definitely not the problem BUT you have to admit that if you say something that people find they have a response/question to, then as the person revealing these opinions, that you place yourself (purposefully I think) in the firing line. I do not think your definitions apply to me - I felt they were directed at me and I think there is a very big difference to these things even though it sounds subtle However, as you say, if it did (for me or anyone else) then that is something they really need to look at and address. For me, I still don't know, this is all very new to me (and I mean ALL) I have never been a member of a forum, I have never had conversations like these with people, I've never discussed any of these things in any way. I feel that it is useful to learn how to talk in these ways, because I've spent 10 years talking to barely anyone and it is hard learning how to have these back and forth type conversations, there is so much to process about it all, like not saying the wrong things, and trying to explain things in a way people understand, and everything else that talking on this forum involves. It is very scary even though no-one knows me, although that helps a little. I may not get things right, I may get them downright wrong, but there is a will to try, a will to learn and a will to improve. I thank you for your patience and explanations - but there's a fair chance you'll find me asking things again!!!! Regards Darkshine Quote Share this post Link to post Share on other sites
bid Report post Posted June 26, 2011 (edited) I find so many things about these discussions (on the forum) downright confusing because on one hand I see people tell others to essentially shut up and get on with it, and on the other see things where major problems occur that have to be dealt with. Hi again Darkshine, I think if you look through the forum you will see that people actually go out of their way to give practical help and advice when someone says they have a specific problem. What I think people can find very frustrating are the posts where someone actually doesn't want to entertain any constructive suggestions, prefering not to take any personal responsibity for their situation and where they are resistant to taking any proactive steps to change a negative situation. Especially when such people use aggressive language or take it upon themselves to talk for 'all' people with AS or make unacceptable comments about people who aren't autistic, etc, etc. I don't think anyone minds you asking for clarification, or being unsure of using a forum for the first time...we were all new here once too Bid Edited June 26, 2011 by bid Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 26, 2011 Hi again Darkshine, I think if you look through the forum you will see that people actually go out of their way to give practical help and advice when someone says they have a specific problem. Hello again I think in the main you are right - although I have seen examples that I feel are similar to what I said before... Maybe its just my perception of things (and I'm not saying I'm right) all I can say is how it feels to me - but I have noticed several times that a person says something or other at the beginning of a post, and suddenly a handful of people jump onto a band-wagon that only discusses one part of the original post, and also people don't ask enough questions to make sure they understand what someone is saying - so the point seems to get missed or lost - because if people are not understanding what the point is, then how can they answer properly? Having said that I can agree that the opposite is true too, and that often people DO try and ask questions but the OP won't or doesn't answer them, or will not listen at all to different views that could enhance their own knowledge. What I think people can find very frustrating are the posts where someone actually doesn't want to entertain any constructive suggestions, prefering not to take any personal responsibity for their situation and where they are resistant to taking any proactive steps to change a negative situation. Especially when such people use aggressive language or take it upon themselves to talk for 'all' people with AS or make unacceptable comments about people who aren't autistic, etc, etc. Yes, this would be frustrating, we are all guilty of being sensitive sometimes to things we don't want to hear, but that's the whole point isn't it? If I was just sat here tapping away to myself I wouldn't get a wider view. And for the record I agree with the second half of this - won't say much more on it cuz I think we both know to what you are referring to, but I agree, and as another poster illustrated, points can be gotten across (very clearly) without being aggressive or resorting to bad language in an attacking way. I don't think anyone minds you asking for clarification, or being unsure of using a forum for the first time...we were all new here once too Bid Thank you Bid, as always I appreciate your input, although if I stick around you may tire of me asking things!!! Its kinda new in a way - because I haven't had many opportunities (in life) where I have felt that I could ask, and there are so many things that I don't know, understand, and that don't make sense, that it is like a novelty that suddenly not only can I ask BUT people answer! I find this really weird, and good, and in a way refreshing, for I have spent FAR TOO LONG in life alone with my thoughts. And for me this is a start, even if I don't feel able to discuss everything just yet (or maybe ever) but everything has to start somewhere.... Many regards Darkshine Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 27, 2011 Asperger's Syndrome was only standardized as a diagnosis in 1994, which means that logically many people in their 70s, 60s, 50s, 40s, 30s - even 20s - were on that spectrum but had either not received any help or the help they had been given was not effective. In order to make any kind of a life for themselves they had to learn to act and/or fake and become good liars. Of course, it's a strain to do this all the time and I can relate to Darkshine's OP where she asks whether, after diagnosis, we should continue to do this. My own feeling is that when dealing with officialdom in the shape of doctors, hospitals, etc. I would find it easier, now I have the diagnosis, to admit to having this syndrome. In other areas of my life I'll continue as before except with a couple of close friends and my partner. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 27, 2011 Of course, it's a strain to do this all the time I think my thoughts on this are developing a little, I know that I cannot act all of the time, I can't even act for very long as it is so exhausting I just close down and fall asleep, but I can see that all people have to do this to a degree in some part of life or other. Maybe my feelings of resentment towards it are normal? The thing that is also difficult is that it really feels like lying, and I am not comfortable with this either. I'm not going to use my dx as an excuse. Maybe eventually I can figure a way round this that feels less tiring and less like lying? I wasn't sure whether other people have any ideas on things that would help me do this? I believe that the tiring part will ease with practice maybe? But the lying and falseness of it all - well, I can't think a way round that at all. Thank you everyone for your comments so far Best Darkshine Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 28, 2011 I think my thoughts on this are developing a little, I know that I cannot act all of the time, I can't even act for very long as it is so exhausting I just close down and fall asleep, but I can see that all people have to do this to a degree in some part of life or other. Maybe my feelings of resentment towards it are normal? The thing that is also difficult is that it really feels like lying, and I am not comfortable with this either. There are times when I'm not comfortable with it either but I excuse myself on the grounds that I only do it when people are questionning me on matters which I feel don't concern them. I believe that the tiring part will ease with practice maybe? Yes it will. But the lying and falseness of it all - well, I can't think a way round that at all. I think of it as a survival tactic and in time it doesn't seem as false. Quote Share this post Link to post Share on other sites
