To be or not to be... Asperger's

[littleplum]

On another thread, baddad raised some interesting questions in response to a new poster. I don't want to risk misrepresenting what baddad wrote so perhaps anyone interested could read the original thread here:

http://www.asd-forum.org.uk/forum/Index.php?/topic/27177-better-late-than-never/

 

My own contribution was to suggest that most people with Asperger's would prefer not to have it at all. I know this is true for me but do others share that view? By the way, I don't mean that I would take a 'magic pill' that could eradicate all the symptoms over night. I would simply prefer to have been born without Asperger's. However, since I was not I have tried to adapt and adjust, reasonably successfully I think.

 

The other more fundamental question raised in the thread was the degree to which Asperger's is a factor in a wider collection of possible 'life' problems. In other words, are we tempted to blame all our difficulties on Asperger's? Each of us is made up of a unique collection of personality attributes and life experiences, so how can we pinpoint one element, Asperger's, as making us fundamentally 'different' from other (NT) people (who of course may have their own emotional baggage).

 

For my own part, I believe Asperger's has made a huge difference to my life, above and beyond other factors. I can see this when I compare myself with close family members who have come from a similar background and yet exhibit none of the symptoms of what has come to be defined as Asperger's Syndrome.

 

What do others think?

[baddad]

My own contribution was to suggest that most people with Asperger's would prefer not to have it at all. I know this is true for me but do others share that view?

 

 

Hi Littleplum -

 

As I said in the other thread there was a poll running on this somewhere on the forum some time ago, and the consensus then among the dx'd adults on the forum was generally that they considered autism an intrinsic part of who they were...

 

It will be interesting, given the relatively recent influx of newly diagnosed HF adults, to see if that dynamic has changed. I thought the old poll was pinned somewhere, but couldn't find it. I never have any luck with the forum's 'search' facility, but if anyone happens to know where it is it would be interesting, after people have had time to respond, to compare the two.

 

L&P

 

BD

[AdamJ]

If there were a pill, I'd swallow it in a heartbeat.

[Mumble]

Is this the poll you meant, BD?

 

Would you use a cure for autism

 

I think there's possibly a difference between cure as in changing who you are now and cure as in never having been. It also depends how you see Autism, and as we can't know what parts of ourselves are due to this and what parts to other things, I think it's really difficult. Of course I'd love to get rid of some of the things I find really hard, but how do I kow they're all as a result only of ASD? And if I get rid of them, what else do I have to get rid of - for instance I actually like my rather quirky slightly strange sense of humour, even if it annoys others, because it's something that makes me me - but what if that's part of ASD and has to go too?

 

I'm sure everyone has parts of themselves/traits/difficulties/etc. that they would want to change or get rid of; I don't think that's unique to ASD. In fact if I had to choose one thing to change about me, it would be to address my physical health first because that, I believe, causes me more problems and makes life harder, than my ASD.

[RainbowsButterflies]

No - I would not take away either my autism or my children's.

 

Autism per se is not a negative thing. The disability arises due to the inability of most NTs to even comprehend the differences in the way we perceive the world and process information, let alone the necessity to make adjustments for it. I have mental health issues arising from a lack of understanding of my AS, which would have been much less severe with an earlier diagnosis.

 

If we can identify early on whether someone is part of the ASD or NT population, and raise and educate them according to this - treating it as a form of diversity with different needs and strengths rather than a disability then I think everyone would benefit.

[baddad]

Is this the poll you meant, BD?

 

Would you use a cure for autism

 

I think there's possibly a difference between cure as in changing who you are now and cure as in never having been. It also depends how you see Autism, and as we can't know what parts of ourselves are due to this and what parts to other things, I think it's really difficult. Of course I'd love to get rid of some of the things I find really hard, but how do I kow they're all as a result only of ASD? And if I get rid of them, what else do I have to get rid of - for instance I actually like my rather quirky slightly strange sense of humour, even if it annoys others, because it's something that makes me me - but what if that's part of ASD and has to go too?

 

I'm sure everyone has parts of themselves/traits/difficulties/etc. that they would want to change or get rid of; I don't think that's unique to ASD. In fact if I had to choose one thing to change about me, it would be to address my physical health first because that, I believe, causes me more problems and makes life harder, than my ASD.

 

Yep, looks like it

 

One difference with this new thread, though, is that it refers specifically to 'Aspergers', and having just noticed that I think it's an interesting distinction. Without wanting to bang again a drum that will be all to familiar to some who disagree with me, I think this possibly interconnects with a wider concern of mine regarding shifting diagnostic goalposts and suchlike. In the simplest terms, for anyone who sees autism as distinct from the 'whole' and who views it only in negative terms then the question equates more to 'would you remove an unsightly wart'? For those autistic people who consider themselves 'whole' and autism as part of that whole, the question becomes something more fundamental - as insulting and disturbing as, for example, asking someone from a different kind of minority group (be it a minority group based on sexuality, ethnicity, gender) whetehr they would want to be cured of that (i.e. 'straight', 'white' or 'male').

 

L&P

 

BD

 

PS: Just thought of another facet of this: What are the implications for those who might choose to remove an unsightly wart and then find that the wart wasn't the thing that was causing all their woes? There's potentially a level of psychological need/dependency on the wart as a focus for all that negative energy and 'blame' that is actually more important than the wart itself. The wart may be, in fact, little more than freckle - or to mix metaphors a molehill that's subjectively and retrospectively been redesignated a mountain...

 

Hmmmmmmmmmmm

Edited September 5, 2011 by baddad

[darkshine]

My own contribution was to suggest that most people with Asperger's would prefer not to have it at all. I know this is true for me but do others share that view? By the way, I don't mean that I would take a 'magic pill' that could eradicate all the symptoms over night. I would simply prefer to have been born without Asperger's. However, since I was not I have tried to adapt and adjust, reasonably successfully I think.

 

The other more fundamental question raised in the thread was the degree to which Asperger's is a factor in a wider collection of possible 'life' problems. In other words, are we tempted to blame all our difficulties on Asperger's? Each of us is made up of a unique collection of personality attributes and life experiences, so how can we pinpoint one element, Asperger's, as making us fundamentally 'different' from other (NT) people (who of course may have their own emotional baggage).

Hi littleplum - have been considering your post for some time today... I would prefer to not have AS at all - but then again there are many things that are a part of me that I would prefer to not exist either...

 

For the second part of your post my answer in the other thread (the one to BD - post #8) says what I think about it in one sense...

 

 

For those autistic people who consider themselves 'whole' and autism as part of that whole, the question becomes something more fundamental - as insulting and disturbing as, for example, asking someone from a different kind of minority group (be it a minority group based on sexuality, ethnicity, gender) whetehr they would want to be cured of that (i.e. 'straight', 'white' or 'male').

There is no whole. Identity and personality are not unitary, fixed things, by saying whole it suggests the opposite to be fragmentary - but not a single person can say they are a set way all the time - even in identical situations. Same for feeling "whole" as a person - how can that be possible when there are constant flows of interaction between an individual, social structures and their environment. Someone can be neurotic or depressed and for a time they may be a part of a person but they can come and go as can other things. So how can AS not be seen as part of this "whole" when it never goes away?

 

I am a person. I see my identity as having a dynamic manner as I can grow, learn and change to varying degrees. But despite this - I still see autism as part of me, a part that is inextricably linked and intertwined within me. But despite your example - there are many things within me that I wish weren't there - I don't want a cure I want history rewritten - but I don't get offended if someone asked if I wanted a cure for something - cuz in simple terms I think they just mean do I wish it weren't there...

 

PS: Just thought of another facet of this: What are the implications for those who might choose to remove an unsightly wart and then find that the wart wasn't the thing that was causing all their woes? There's potentially a level of psychological need/dependency on the wart as a focus for all that negative energy and 'blame' that is actually more important than the wart itself. The wart may be, in fact, little more than freckle - or to mix metaphors a molehill that's subjectively and retrospectively been redesignated a mountain...

 

Hmmmmmmmmmmm

They would be called shallow I think - or blinded - or lacking in understanding - or just plain stupid...

 

There's a lot of stuff being said, and AS can have different levels of priority for people - it's just that some of us seem to be having problems more to do with acceptance maybe, or regret, or wishing for "what if's" and although these things are aimed at AS, it doesn't mean that AS is to blame for everything - of course not - but it is/has been a factor of distress, upset, depression, confusion, humiliation, rejection, isolation and many other factors, that even though AS itself is not part of a total cause and effect relationship - it is a factor - mainly due to lack of understanding.

[baddad]

There is no whole. Identity and personality are not unitary, fixed things, by saying whole it suggests the opposite to be fragmentary - but not a single person can say they are a set way all the time - even in identical situations. Same for feeling "whole" as a person - how can that be possible when there are constant flows of interaction between an individual, social structures and their environment. Someone can be neurotic or depressed and for a time they may be a part of a person but they can come and go as can other things. So how can AS not be seen as part of this "whole" when it never goes away?

 

Hi Darkshine -

not sure what you mean here, as the two POV expressed seem self-contradictory [There is no whole/AS is part of the whole because it never goes away] - particularly when considering the primary question being asked about not having it at all(?). That you wouldn't find it offensive to have the idea raised that you need to be 'cured' may in some way be an expression of this confusion/contradiction (I'm not saying it is, but it may be!), but certainly for many people with AS it is an offensive question because they see it as a direct value judgement being made about their 'humanity', or even - where the question of screening/eugenics raises its ugly head - their right to exist at all. The other post linked by mumble has some interesting perspectives from a one time member called Lucas on this. I disagree with some of those perspectives, but do believe (in general terms) that AS is a fundamental part of the whole person, and that looking to take that away - whether by cure or by rewriting history - implies all sorts of negative moral and value judgements that are profoundly 'wrong', which is where comparisons with other minority/disenfranchised groups become valid.

 

 

They would be called shallow I think - or blinded - or lacking in understanding - or just plain stupid...

 

No, I think that's a huge over-simplification. People - whether AS or not - often project 'blame' for their faults or mistakes onto/into all sorts of areas. This is an intrinsic aspect of human nature. Have you ever stubbed your toe on a piece of furniture, then sworn at the piece of furniture? That it is dangerous, unrealistic and self-delusional to do that is undoubtedly true, but it is also perfectly natural, and for some people can become so intensely intertwined with their sense of worth and self-identity and personal psychology that having the 'crutch' taken away would have very dramatic effects on their wellbeing. For some people - again, this applies equally to those on the spectrum and the non-autistic - the need to be a 'victim' is a vital part of their make-up and Asperger's Syndrome (particularly at the 'HF', 'Mild' or 'Traits' end of the spectrum) is a uniquely user-friendly medical condition to project onto, as well as one that is pretty much uniquely easy to acquire. To paraphrase Descarte it can be as simple as "I think I'm Asperger's therefore I am", and that thinking is just as likely (or perhaps even more likely) to be subconscious as conscious.

 

 

L&P

 

BD

 

PS: I trust no one will take any personal slight from the observations above, as that is certainly not how they are intended.

Edited September 6, 2011 by baddad

[littleplum]

Hi baddad,

 

As your post on the other thread prompted me to start this one, I thought I would address the points you make in your reply to darkshine. They seem to include earlier points you made in the thread. Anyway it is easier for me to pull quotes from one post - I haven't mastered the technical aspects of multi-quoting yet.

 

That you wouldn't find it offensive to have the idea raised that you need to be 'cured' may in some way be an expression of this confusion/contradiction (I'm not saying it is, but it may be!), but certainly for many people with AS it is an offensive question because they see it as a direct value judgement being made about their 'humanity', or even - where the question of screening/eugenics raises its ugly head - their right to exist at all.

You make quite a leap here from my original question as to whether or not those with AS would prefer not to have the condition to the... Nazi extermination programme!

 

Are you suggesting that no one must ever raise the hypothetical question with which I began this thread because it could lead to another Auschwitz? Good grief! Apart from such hyperbole, who are the 'many people with AS' for whom such a question is 'offensive'? Unlike you, I can speak only for myself. Growing up in a world ignorant of and unsympathetic to the condition was very difficult for me. I would prefer if I had not been born with Asperger's. I might not have been any happier or more fulfilled, but I don't think I would have tortured myself with questions as to why I seemed to be a social pariah. I accept that some AS people may regard the condition as integral to their identities; they may even see some advantages in being AS. I respect their right to their views, even if I don't share them myself.

 

For some people - again, this applies equally to those on the spectrum and the non-autistic - the need to be a 'victim' is a vital part of their make-up and Asperger's Syndrome (particularly at the 'HF', 'Mild' or 'Traits' end of the spectrum) is a uniquely user-friendly medical condition to project onto, as well as one that is pretty much uniquely easy to acquire. To paraphrase Descarte it can be as simple as "I think I'm Asperger's therefore I am", and that thinking is just as likely (or perhaps even more likely) to be subconscious as conscious.

You are suggesting here that Asperger's Syndrome is almost like a 'trophy' disease for troubled souls who need a label to attach to their collection of (largely imaginary) neuroses. I presume that, like me, you read the various threads on this forum and come across some heartbreaking stories of what being AS is like for many members. On that basis, how can you could make such a cynical generalisation? It makes your PS sound very hollow indeed.

[darkshine]

Hi Darkshine -

not sure what you mean here, as the two POV expressed seem self-contradictory [There is no whole/AS is part of the whole because it never goes away] - particularly when considering the primary question being asked about not having it at all(?).

Hi BD - I meant that there isn't such thing as a whole in terms of having a complete and fixed identity - but that doesn't mean certain features cannot permanently reside within a person's make-up - although the perception may change so again, nothing is fixed... So if someone is dx'd with something that doesn't go away - even that dx is not a fixed entity it doesn't stay exactly the same cuz people can learn, grow, change - so imagining it to "not exist" isn't so stupid when you realise how perception/knowledge/experience etc. changes the thing being looked at.

 

That you wouldn't find it offensive to have the idea raised that you need to be 'cured' may in some way be an expression of this confusion/contradiction (I'm not saying it is, but it may be!), but certainly for many people with AS it is an offensive question because they see it as a direct value judgement being made about their 'humanity', or even - where the question of screening/eugenics raises its ugly head - their right to exist at all.

It wasn't necessarily "A cure" I was talking about - in fact, I wasn't talking about a cure at all... I was only responding to what you said about a cure - I don't think that ASD's can be viewed in that way - I'm fine with the hypothetical nature of the discussion but placing two things side by side:

 

Not being diagnosed with an ASD - - - - - - A cure

 

I feel a lot more comfortable with thinking about "not having AS" than thinking about "a cure" but the line between them isn't clear cut - by saying one, I implicate that I lean towards the other, when I don't...

 

Basically, I don't mind people asking me questions - day-to-day questions about weather. soaps etc completely befuzzles me so when people ask me insulting, vulgar, or overly personal questions I'm actually more relieved than anything cuz they make more sense - I can see better why they are being asked than what my current opinion of the recent weather has any relevance...

 

No, I think that's a huge over-simplification. People - whether AS or not - often project 'blame' for their faults or mistakes onto/into all sorts of areas. This is an intrinsic aspect of human nature. Have you ever stubbed your toe on a piece of furniture, then sworn at the piece of furniture? That it is dangerous, unrealistic and self-delusional to do that is undoubtedly true, but it is also perfectly natural, and for some people can become so intensely intertwined with their sense of worth and self-identity and personal psychology that having the 'crutch' taken away would have very dramatic effects on their wellbeing. For some people - again, this applies equally to those on the spectrum and the non-autistic - the need to be a 'victim' is a vital part of their make-up and Asperger's Syndrome (particularly at the 'HF', 'Mild' or 'Traits' end of the spectrum) is a uniquely user-friendly medical condition to project onto, as well as one that is pretty much uniquely easy to acquire. To paraphrase Descarte it can be as simple as "I think I'm Asperger's therefore I am", and that thinking is just as likely (or perhaps even more likely) to be subconscious as conscious.

Yes, I frequently stub my toes, bang my arms, legs, knees, hips - ah never mind - all of me is familiar with a lot of rock hard objects within the home mostly I get angry at me, sometimes I get angry that someone left something in the wrong place (and if it wasn't there I'd have not bumped myself as a consequence - blame ) and finally, and very occasionally I blame the object - but you know what? I always know it was my fault - for not paying attention, for not being careful, for having bad spatial awareness at times and being clumsy, and having bad balance at times too - does everyone not know it was their fault?!?

 

As for cures - well I don't know what I fully think about that - I can see why someone who sees something as being an integral part of them would be insulted if someone wanted to cure them of being them essentially. But there's also people who are not happy with being them - and I could also see why they might not want what they deem to be a fundamentally negative part of themselves.

 

But I'm not sure if cure is the right word - cure suggests and illness or disease, ASD's aren't a disease but some would say it's an illness - it's where the history and social usage of these words has varying implications for meaning. Also identifying what is what is no easy task - as I replied to you in the thread "better late than never" post #8 - some parts are clearly AS and others aren't...

[philipo]

Logically a 'cure' is somthing for an illness.the value judgment for illness change with time and culture.Baddad makes the clear point when quoting 'i think therefore i am'.identifying with a (d)isability can be productive for people in late diagnosis,as they can reconcile and understand the influences that have made their past history.but fully blaming past events on asd/aspie/auty's is really a negation of the present ,and our personal power to change and steer our lives.victimhood is'nt a happy place,nor a positive one.

what if there was a black man who always wonderd why life happend as it happend without him understanding why it went pear shaped all the time,only to wake up one day and then have an awareness of skin colour and racial discrimination for the first time in his life?would he want to be black still?or take a pill to make him a different shade?My opinion is that its a socially projected disability,caused by cultural ignorance and intolerance and fear of difference,it has a biological foundation,so does ginger hair,but its not an illness.

obesity is considerd an illness and a disabilty by some,but only because of the tolerance for overeating an unhealthy lifestyles9cultural projections).We could 'cure obesity' by making people do exercise and limiting their food intake but would be called 'facist' for doing so as these people have 'human rights',but it could be the thin end of the wedge.once scientists/doctors find genes for dyslexia and autisim and a hundred other things then it wont be long before you may be able to terminate pregnancies,in the name of 'health' of course.The ultimate end to this kind of thinking will probably bbe a human race so similair in biology that it gets wiped out by a minor flu virus that spreads round the world by grandma's blue budgie.nature loves diversity and the reasons are mostly unclear.My opinion is that asd genetics are biological protection for a future ice age.

winston Churchill,well before Hitler,in 1910 proposed a 'mercy killing'proposal in the houses of parliment to eradicate,in his words 'life not worthy of life'.

[darkshine]

I often feel as though I "am not worthy of life"

[bid]

This is a very personal response. Over the last few months there has been a lot of self-analysis here by people who are at the high-functioning end of the spectrum.

 

How about you all look at the very many positives in your lives?

 

I have a dx of AS. I have also got 4 children. My mum is currently being treated for breast cancer...and today I have been referred for an urgent mammogram as my GP has certain concerns about me.

 

I wish all I had to worry about was having AS or over-analysing every tiny aspect of my personality and life.

 

Apologies if this offends, but I think people need to get some realism and perspective.

 

Bid

[darkshine]

It doesn't offend me at all - but I would add that AS isn't my only concern in life - there are many other factors that I do not discuss ranging from family illness, divorce, death, children being taken into care, unemployment worries, mental health breakdowns and that's just the tip of the iceberg with me and the people I know - I just bring AS discussions here cuz this is an ASD forum and AS is related (either directly or indirectly) to the things in life I wish to sort out.

 

I think for people, it depends why they are here... I'm here to improve me and my life - I can't help but talk about things relating to that because that is what I'm trying to learn how to do.

 

Also discussions like this one interest me - it interests me to think about different things, that and I have a tendency towards the negative (I am involved in BD's positive post too - although you could argue its not that positive - but there's still time).

 

I don't know why these topics make you angry tbh, and in all fairness I find it uncomfortable for someone to flash the terminal illness card so often - I mean, what can people say to that? There's nothing to say at all, not without going into some pointless competitive type discussion of who has it worse (and I myself am trying not to measure myself against others).

 

You say people should get realistic and get perspective - we are doing that by discussing the negatives too, it helps me at least - for a number of reasons. I'm also trying to keep perspective - now, this discussion is about the degree of acceptance of Asperger's - which is exactly the perspective being discussed and not cancer and in all honesty I don't think it's fair for you to have a go at people cuz of your personal problems stating we should get perspective, when it seems you are the one without it cuz this whole thread here is for a discussion on AS...

 

Darkshine

[bid]

 

I don't know why these topics make you angry tbh, and in all fairness I find it uncomfortable for someone to flash the terminal illness card so often - I mean, what can people say to that? There's nothing to say at all, not without going into some pointless competitive type discussion of who has it worse (and I myself am trying not to measure myself against others).

 

 

 

Thank you for that comment Darkshine.

 

I have been a member here for over 7 years. There are now more adult members with a 'dx' of AS than ever before (I put that in inverted commas because these dxs range from formal through to home).

 

Yet I find I can only identify with three other diagnosed adults here, who have all overcome various personal difficulties to do their best to live productive, positive lives (and one is my adult son).

 

It angers me because I see self-indulgent naval gazing instead of a 'can do-will do' attitude to autism.

 

Edited September 12, 2011 by bid

[darkshine]

Thank you for that comment Darkshine.

 

I have been a member here for over 7 years. There are now more adult members with a 'dx' of AS than ever before (I put that in inverted commas because these dxs range from formal through to home).

 

Yet I find I can only identify with three other diagnosed adults here, who have all overcome various personal difficulties to do their best to live productive, positive lives (and one is my adult son).

 

It angers me because I see self-indulgent naval gazing instead of a 'can do-will do' attitude to autism.

 

Thank you for not blowing up at me I was worried there for a bit - but I wanted to be honest - I'm glad you seem to have took it ok

 

I've noticed that there are a lot of us belly-aching at the moment - and other longer-term members have also pointed that out. I can only speak for myself - but my intentions are the ones I said a little while ago - I intend to learn, improve, overcome issues, and move on in my life. I also hope that if on any part of that journey, my ramblings help one person to feel less bad, then that is a good thing too, and maybe, if I do things real well, it might inspire other's to try too.

 

I wish I weren't so negative - and I do try to be realistic and keep perspective - it is important to do so at least every once in a while - otherwise I'd walk around in self-pity moaning and griping ALL the time - which would be pretty rubbish for people around me, and it'd get me nowhere.

 

I'm hopelessly flawed I don't know how to have a can do-will do attitude until I solve a few issues that prevent that (I have appointments this month to make steps for doing that so I will work hard and see where it goes).

 

I don't want to offend anyone and I'm often scared of saying what I think - I took a chance today - I appreciate that you took it so well and I am grateful for your honesty - because honesty also adds perspective and can be very constructive if taken in a somewhat right way

 

Regards

 

Darkshine

[bid]

My 'thank you' was sarcastic, Darkshine.

 

Bid

[baddad]

Also discussions like this one interest me - it interests me to think about different things, that and I have a tendency towards the negative (I am involved in BD's positive post too - although you could argue its not that positive - but there's still time).

 

You say people should get realistic and get perspective - we are doing that by discussing the negatives too, it helps me at least - for a number of reasons.

 

Darkshine

 

Hi darkshine - I think the issue, as you've said, is that there doesn't seem to be much 'positive' appearing in the threads at all - as you've rightly pointed out - and that the perspectives arrived at by discussing negatives pretty much exclusively are almost certainly going to be negative perspectives.

 

Yes, you could argue that the other thread is 'not that positive', but purely because many of the posts have been defensive / passive aggressive and there seems a general unwillingness to consider any of the observations that have been made about people taking a more positive view of themselves rather than dwelling on the negatives and labeling them all 'autism' regardless.

 

Leaving all other aspects of bid's post aside I totally agree about the need for more 'realism and perspective' than we're currently seeing in many threads, and the amount of 'over-analysis' (a much politer word than springs to my mind!) going on.

 

As far as the other aspects of bid's post do go, I hope there is some positive and reassuring news soon.

 

L&P

 

BD

[bid]

 

I don't know why these topics make you angry tbh, and in all fairness I find it uncomfortable for someone to flash the terminal illness card so often -

 

Just to clarify Darkshine, to the best of my knowledge, I posted in Off Topic to say my mum had been diagnosed with breast cancer (at least one other member here has actually met my mum), and then in my thread about a London Meet I said I would be disappearing for a while a couple of days after her mastectomy as I was extremely busy at work plus making 50 mile round trips to see her...

 

This is 'flashing the terminal illness card so often'??

 

Hence my sarcastic 'thank you' in my next post.

 

Bid

Edited September 12, 2011 by bid

[littleplum]

This thread, and perhaps others, highlights the different perspectives which members bring to bear on AS. Some have children with the condition and are perhaps worried about their futures. For others like myself, discovering that they are Asperger's has brought a certain relief after many years of anxiety and self-doubt over their inability to make friends, or even just communicate. Then there are younger members with AS who are trying to overcome their symptoms and lead as normal lives as possible.

 

What may seem like navel-gazing could really be someone's genuine attempts to understand and improve themselves. This forum allows members to reveal what may be deep-seated fears or very private experiences in order to receive some sort of validation that they are not 'weird'. The fact that members are anonymous helps, but I think it is also helpful to feel that those who read and respond are generally empathetic if not sympathetic.

 

The world can be a very harsh place and this forum should IMO be a 'safe place' to reveal our vulnerabilities.

 

Perhaps I am being naive...?

[baddad]

The world can be a very harsh place and this forum should IMO be a 'safe place' to reveal our vulnerabilities.

Perhaps I am being naive...?

depends what you mean by 'a safe place'... If it means being able to say whatever one wants about autism - whether it be 'your own' autism or a generalisation - without ever being challenged or without ever having to listen to other people's POV then yes, I think you are being something, but I'm not sure naive is the word. What may seem like a genuine attempt to understand / improve oneself may seem like navel-gazing (or denial, self-indulgence, projection, blame, assumption, posturing, appropriation, attention seeking... quite a lot of different things) to another...

 

It's quite subjective, because what some people see as 'negativity' is for another something positive, and vice versa... I don't see any positives in moaning about how desperately hard it all is or how much of a victim autism makes people or any of the other 'can't do' perspectives that seem represented in the vast majority of posts on the forum, but I can see lots of positives in the posts that challenge those perspectives and tend to get shouted down for doing so. But perhaps I'm naive, and autism really is a unique condition that turns all logic on its head and makes a virtue of negtivity and self-disablement / projected disablement? Got to say, I haven't seen much evidence of that - If I look in the most general terms at what's happened over the past couple of decades the most profoundly affected disabled people seem to be facing exactly the same problems they were back then, while the hugely expanded numbers of 'HF' autistics actually seem to be achieving less.... less of them able to 'cope' with going to school, less of them able to 'cope' with their anger issues, less of them able to understand the basic rights and wrongs, less of them able to eat a normal diet, less of them able to sleep at night, less of them able to live without medication, less of them able to....

 

I don't know how you dress those things up as positives, TBH, but if challenging and questioning those things and having higher expectations for autistic children than that is seen as a negative (which invariably seems to be the case) many, many parents and professionals must think they are(?)

 

L&P

 

BD

 

L&P

 

BD

Edited September 12, 2011 by baddad

[darkshine]

Hi darkshine - I think the issue, as you've said, is that there doesn't seem to be much 'positive' appearing in the threads at all - as you've rightly pointed out - and that the perspectives arrived at by discussing negatives pretty much exclusively are almost certainly going to be negative perspectives.

I've always found positives hard, but that doesn't mean I'm prepared to just entertain negatives - I like a realistic approach and that has to include a variety of things and not just a black and white view. Also, speaking for myself, I do not attribute every negative in my life to autism - in fact most I think are due to other factors - all I say is that AS is a factor - but that doesn't mean I think it's the cause - just a relevant factor.

 

It might sound odd to say that I find negative discussion helpful - but the fact is I do, I read things that other people write and think: "I struggle with that too" or "that's how I feel" or thoughts/feelings to that effect. So it's useful in making me feel like I'm not the only one - also I find it nice to be able to say things and find that there are people out there who understand me and what I'm saying.

 

In trying to make a positive use out of negatives - I find it helpful sometimes when I read stuff where people go on and on and I make efforts not to do the same all of the time (as I am prone to doing), it is useful for spotting behaviours/thoughts I have myself, and in advising someone or just in trying to understand them, it becomes easier to ask myself the same questions and work through how to challenge things in my mind and my life.

 

Yes, you could argue that the other thread is 'not that positive', but purely because many of the posts have been defensive / passive aggressive and there seems a general unwillingness to consider any of the observations that have been made about people taking a more positive view of themselves rather than dwelling on the negatives and labeling them all 'autism' regardless.

I've said a couple of times that I would find it interesting to see a clearly defined list of positives and so far nobody has written one - I also explained why I am reluctant to do so... I believe that some of us here are trying to get to somewhere better, and that includes perceptions, opinions and outlooks as well as behaviour, social and functional issues to work out and resolve.

 

I have far to go BD and I'm not there yet

 

Best

 

Darkshine

[darkshine]

What may seem like navel-gazing could really be someone's genuine attempts to understand and improve themselves. This forum allows members to reveal what may be deep-seated fears or very private experiences in order to receive some sort of validation that they are not 'weird'. The fact that members are anonymous helps, but I think it is also helpful to feel that those who read and respond are generally empathetic if not sympathetic.

 

The world can be a very harsh place and this forum should IMO be a 'safe place' to reveal our vulnerabilities.

 

Perhaps I am being naive...?

Hi littleplum - long time no type

 

I am someone who is genuinely trying to understand and improve myself - I want to learn so many things that I don't know where to start most of the time (not helped by the fact I forget why I'm doing it/what I'm doing this for).

 

I do not feel that this forum is a "safe place" to reveal vulnerabilities at all - this is because my perception of people in the world is that most of them are not sympathetic or empathetic - some are - but equally there's a million other personality types out there who aren't.

 

Empathy is something I have to work hard at - in one sense I don't give a damn if we all get nuked tomorrow and all die - on the other hand, I am trying to be a part of society and since this view is not widely approved of, I make extensive efforts to try to "put myself in other people's shoes" - this is very very difficult - for how can I know how it feels to be someone else? So, the closest I get is through words and actions, if I can identify with what someone is saying it makes it a little easier to imagine what they might feel (dunno what they think beyond what they say - but some words carry essences of feelings - and sometimes I am blindly oblivious) I guess this is why I am working on this area - I haven't mentioned this before now because it's just something I'm working on, but there are other things I am working on also, that I have not pointed out - people will just have to take my word on it I guess...

 

But yeah, this forum is only "safe" if you are prepared to have every little word pulled apart, judgements made on a mere paragraph of your life, challenges for why you are here and the verification of any existing or not existing dx. If you are prepared for that in the first place then instead get constructive criticism, helpful comments, understanding, encouragement, or just people who wanna rant with you then you'll be fine

 

Sometimes negative defensiveness can be useful - I've been upset enough times on here to know

[baddad]

But yeah, this forum is only "safe" if you are prepared to have every little word pulled apart, judgements made on a mere paragraph of your life, challenges for why you are here and the verification of any existing or not existing dx.

 

Definitely two sides to that particular observation, eh?

 

I've said a couple of times that I would find it interesting to see a clearly defined list of positives and so far nobody has written one

 

and i asked why you feel autism, exclusively in the field of disability, should be a 'positive experience' or virtue rather than just 'part of a life'?

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/27182-trying-to-promote-more-positive-perspectives-on-autism/page__view__findpost__p__313395

L&P

 

BD

Edited September 12, 2011 by baddad

[darkshine]

Definitely two sides to that particular observation, eh?

Yes BD and there are probably more 2 sides - I - like everyone else, am not perfect - it just makes sense to be prepared cuz if you come on here thinking everyone's gonna go "there there" they might not - and not always for simple reasons either - there could be loads of reasons....

 

and i asked why you feel autism, exclusively in the field of disability, should be a 'positive experience' or virtue rather than just 'part of a life'?

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/27182-trying-to-promote-more-positive-perspectives-on-autism/page__view__findpost__p__313395

L&P

 

BD

I don't know tbh - but in a way, why not? I've seen people with disabilities talking about their experiences on tv and in newpapers, and even face-to-face on occasion, and it is incredible how many of these people manage to turn their disability into a positive in their life - I'm sure there are just as many people (if not more) who do the opposite and let it ruin their life even more - but people do exist who try to make the best of things.

 

But to answer directly - I don't think autism should be a positive experience, I don't even think it is a positive experience for many - all I am trying to do is to see what you were trying to say about everyone drawing exclusively on the negative aspects of autism/life and trying to promote a more positive perspective...

 

To be honest I thought we were also talking about positive perspectives on autism? If your asking if I think experiences are part of that, then yeah, I guess I do - cuz it's people's experiences that can make autism seem like a positive or negative when people look at info presented and not the wider picture (which still seems negative), and also for people looking at those people IYSWIM.

 

And surely if it's negative to say the things that people have said: about their thoughts, feelings, experiences - then wouldn't a more positive perspective include good things - or even identifying ways in which autism isn't to blame for everything bad? Also, as I see it a negative perspective is based on lack of understandings too...

[baddad]

I don't know tbh - but in a way, why not? I've seen people with disabilities talking about their experiences on tv and in newpapers, and even face-to-face on occasion, and it is incredible how many of these people manage to turn their disability into a positive in their life - I'm sure there are just as many people (if not more) who do the opposite and let it ruin their life even more - but people do exist who try to make the best of things.

 

 

No, I don't think there are many who 'make disability a positive in their lives' - they just live life with a positive attitude and don't go looking for negatives all the time. They don't compartmentalise their lives into good bits and bad bits and label all of the bad bits 'disability'. And having worked for years with disabled people my own experience is that there are not 'just as many (if not more)' i.e. physically handicapped or learning disabled people letting it ruin their lives even more, and if you haven't picked up on my opinion about that yet you really are cherry picking!

 

I would love to talk about ways in which autism isn't to blame for everything bad, but to do that we'd have to talk about the things people are saying are 'bad' and 'autism', which takes it from general and non-specific to personal and specific, which isn't going to go down too well is it? How long could we realistically (howvere logically and politely) talk about a specific behaviour in a specific scenario without someone having a 'meltdown' and shouting 'victim'?

 

Anyhoo this is going peretty much the same way these threads tend to go: circular. So if you want to know my feelings about how to 'positive up' autism read all the posts I've made about challenging the negative assumptions and stopping using autism as an excuse for every flaw, every weakness, every hang-up that an individual might have.

 

L&P

 

BD

Edited September 12, 2011 by baddad

[darkshine]

No, I don't think there are many who 'make disability a positive in their lives' - they just live life with a positive attitude and don't go looking for negatives all the time. They don't compartmentalise their lives into good bits and bad bits and label all of the bad bits 'disability'. And having worked for years with disabled people my own experience is that there are not 'just as many (if not more)' i.e. physically handicapped or learning disabled people letting it ruin their lives even more, and if you haven't picked up on my opinion about that yet you really are cherry picking!

I don't know what cherry picking is!!!! (other than actually picking cherries or those things they use for getting up high - like a crane thing - and obviously you mean neither - and a google search didn't help because it said about taking the best bits or something)

 

I can't sit here and make sure that I quadruple check every single word BD - I'm already treble-checking as it is - and you know what? I am not able to second guess you every time we talk.

 

All I meant was what you have so cuttingly reiterated for me - "they just live life with a positive attitude and don't go looking for negatives all the time. They don't compartmentalise their lives into good bits and bad bits and label all of the bad bits 'disability'" so thank you for wording it better - I'm sorry that I said it in the wrong way (yet again)

 

I would love to talk about ways in which autism isn't to blame for everything bad, but to do that we'd have to talk about the things people are saying are 'bad' and 'autism', which takes it from general and non-specific to personal and specific, which isn't going to go down too well is it? How long could we realistically (howvere logically and politely) talk about a specific behaviour in a specific scenario without someone having a 'meltdown' and shouting 'victim'?

Well that is exactly what I was trying to do BD - I don't know if what I say is worth a dime - but it is what I was trying to do - not my fault if no-one else has the bottle - and it takes me some time to find mine...

 

Thing is, would it be an equal discussion though? Cuz someone like you is so good at twisting things people say I wonder if you would even give people a fair chance of explaining themselves before you elegantly rip their words apart? Or could you hold back and try to understand what is being said and allow people the opportunity to justify themselves? Could you resist so brilliantly using the things people say against them or could you accept that not everyone can say things 100% perfect all the time?

 

Anyhoo this is going peretty much the same way these threads tend to go: circular. So if you want to know my feelings about how to 'positive up' autism read all the posts I've made about challenging the negative assumptions and stopping using autism as an excuse for every flaw, every weakness, every hang-up that an individual might have.

I've read a fair few already and if you want a thread to go in a direction then say something that takes it somewhere... It could be an interesting discussion but you can't blame me if you've got nothing to say - I said/asked some relevant things - not my fault nobody said much is it?

 

Best

 

Darkshine

 

PS - This PS is a brief explanation for the tone of this message

 

I've already upset 3 people today, so I'm getting the sense that nothing I say is gonna be perfect today, so in this instance, I haven't made any attempt to make this perfect - plus I'm tired - but despite the blunt tone (or whatever else on earth is coming across here) - I say this cuz usually when I make little attempt at perfection people often react badly or accuse me of things. I am not taking anything personally, or emotionally, I feel no frustration or irritation of any kind, and I'm not trying to pee you off either - its just that this is what I talk like when I'm not watching every word - most people don't like it but hey you're old and wise enough - I'm sure you can handle it

 

Also you will notice I replied to you honestly about you comments on labels and other points about this in your actual thread

Your thread

[baddad]

Thing is, would it be an equal discussion though? Cuz someone like you is so good at twisting things people say I wonder if you would even give people a fair chance of explaining themselves before you elegantly rip their words apart? Or could you hold back and try to understand what is being said and allow people the opportunity to justify themselves? Could you resist so brilliantly using the things people say against them or could you accept that not everyone can say things 100% perfect all the time?

 

Yes. Of course that's what it is; 'twisting things people say', elegently and brilliantly ripping their words apart... couldn't be anything as simple or reasonable as disagreeing with them and/or finding the assumptions and conclusions they reach unreasonable, could it? How could it be an equal discussion? The above is a prime example of why that can't happen, because you've already set out the parameters; a victim (or group of victims) just trying to get along and a nasty ol' ogre hidin' under the bridge just waiting to pounce! And while you'll say that's another case of your words being twisted, or offer the 'justification' that it's just your nasty ol' autism that stops you being able to express yourself properly I think it would be patronising - however much you might want me to patronise you - to pretend that you didn't know exactly how your words would be received or perceived, either by me or by those who are willing to play along with you. I don't ask anyone to 'justify themselves' and I certainly don't need people to say things 100% perfect all the time, but I do find all the posturing, pretense and role assignment frustrating when I treat people who quite clearly are literate and capable as equals. I find it even more frustrating (frankly offensive) when they want to have their cake and eat it by 'playing up' or 'playing down' their autism / intellect as and when it's convenient.

 

L&P

 

BD

[darkshine]

Yes. Of course that's what it is; 'twisting things people say', elegently and brilliantly ripping their words apart... couldn't be anything as simple or reasonable as disagreeing with them and/or finding the assumptions and conclusions they reach unreasonable, could it? How could it be an equal discussion? The above is a prime example of why that can't happen, because you've already set out the parameters; a victim (or group of victims) just trying to get along and a nasty ol' ogre hidin' under the bridge just waiting to pounce! And while you'll say that's another case of your words being twisted, or offer the 'justification' that it's just your nasty ol' autism that stops you being able to express yourself properly I think it would be patronising - however much you might want me to patronise you - to pretend that you didn't know exactly how your words would be received or perceived, either by me or by those who are willing to play along with you. I don't ask anyone to 'justify themselves' and I certainly don't need people to say things 100% perfect all the time, but I do find all the posturing, pretense and role assignment frustrating when I treat people who quite clearly are literate and capable as equals. I find it even more frustrating (frankly offensive) when they want to have their cake and eat it by 'playing up' or 'playing down' their autism / intellect as and when it's convenient.

 

L&P

 

BD

I don't know what it is about you that you are always looking for the bad in people - I ask a perfectly reasonable question based on past discussions - highlighting your skills - and simultaneously pointing out mine (which differ).

 

I'm not painting myself as a victim - I was seriously asking if you would give people a chance - cuz based on my experience I'm not sure that people do feel like you've given them a chance in discussions similar to this one.

 

I find it offensive for you to suggest that I am playing up or down my writing skills according to "when it suits" when that just isn't true and I'm not using or blaming autism for that - I just don't always understand things BD and on top of that I feel that I have a huge difficulty in getting things across.

 

Jeez man, I only asked if you were willing to try... I think you are very skilled it the way you discuss things - in fact I'd say one of the most skilled I've seen on here - I was merely asking if you'd be willing to level the playing field is all...

 

Regards

 

Darkshine

 

Edit - and you obviously do care about people saying things right 100% of the time - as perfectly illustrated here - cuz I obviously did not say things 100% right.

 

Also I disagree with your opinions on intellect, capability and literacy - just cuz people can write words - doesn't mean they can think of every single way they can be interpreted - it also doesn't mean that explanations are perfect - or even adequate sometimes.

 

I am still willing to discuss the actual matter at hand (in the relevant place) which you conveniently ignored from my reply - also my explanation of my reply (which was actually given because my housemate read what I posted and said it sounded bad - so I thought I'd add the explanation for that reason because I am not trying to insult you (I actually thought it was just direct but apparently not according to my housemate)

 

Edited September 13, 2011 by darkshine

[bid]

Yes. Of course that's what it is; 'twisting things people say', elegently and brilliantly ripping their words apart... couldn't be anything as simple or reasonable as disagreeing with them and/or finding the assumptions and conclusions they reach unreasonable, could it? How could it be an equal discussion? The above is a prime example of why that can't happen, because you've already set out the parameters; a victim (or group of victims) just trying to get along and a nasty ol' ogre hidin' under the bridge just waiting to pounce! And while you'll say that's another case of your words being twisted, or offer the 'justification' that it's just your nasty ol' autism that stops you being able to express yourself properly I think it would be patronising - however much you might want me to patronise you - to pretend that you didn't know exactly how your words would be received or perceived, either by me or by those who are willing to play along with you. I don't ask anyone to 'justify themselves' and I certainly don't need people to say things 100% perfect all the time, but I do find all the posturing, pretense and role assignment frustrating when I treat people who quite clearly are literate and capable as equals. I find it even more frustrating (frankly offensive) when they want to have their cake and eat it by 'playing up' or 'playing down' their autism / intellect as and when it's convenient.

 

L&P

 

BD

 

Very well put.

 

I never, ever thought I would say this, but increasingly I feel embarassed that I have a dx of AS when I read some of the opinions and attitudes expressed on this forum in recent months. I don't want people who know little about HFA thinking that this is what I, and the other adults who I personally know, are like

 

My idea of the positives of autism? People like my adult son, Pearl's adult son, Suze's lad with his tractors and his brilliant post a few days ago...these are all people with autism who are busy forging happy, independent, productive lives because they look outwards.

 

Bid

Edited September 13, 2011 by bid

[darkshine]

I may be hopelessly flawed but I am glad of one thing - despite everything that has happened in my life - and despite the fact that I did not seek this dx - I would rather be like me in terms of trying to understand, to ask questions, to have an interest. I may consistently get things wrong, but in doing so I hope to learn, and perhaps most importantly - I am willing to be open-minded.

 

I of all people know what it is like to come across the wrong way - and for every extra sentence to just make things worse - I am used to people not understanding or misinterpreting me - so what do I do? Instead of belly-aching constantly I figure that the flaw is mine, so I try to work on it, even when it is always an uphill battle and I feel thoroughly defeated - I still try.

 

BD you accuse me of saying that I blame autism for every negative - like you accuse a lot of others too - so how on earth can people discuss the things they want to understand, improve and address - without mentioning what these negatives are?!?!? If something was positive they wouldn't necessarily need to improve, understand or address it would they?!?

 

I really do not see how virtually telling people who are trying to understand things that they are wrong, to shut up and stop moaning, or challenging them in such a way that a response is difficult, is a useful manner to improve attitudes, opinions, understandings etc - or even to present autism in a more positive perspective....

[bid]

 

I of all people know what it is like to come across the wrong way - and for every extra sentence to just make things worse - I am used to people not understanding or misinterpreting me -

I'm sorry, Darkshine, but I think you are being a little bit disingenuous here...I think you had a pretty good understanding of the impact of your comments to me about cancer further up this thread.

 

BD you accuse me of saying that I blame autism for every negative - like you accuse a lot of others too - so how on earth can people discuss the things they want to understand, improve and address - without mentioning what these negatives are?!?!? If something was positive they wouldn't necessarily need to improve, understand or address it would they?!?

 

I really do not see how virtually telling people who are trying to understand things that they are wrong, to shut up and stop moaning, or challenging them in such a way that a response is difficult, is a useful manner to improve attitudes, opinions, understandings etc - or even to present autism in a more positive perspective....

 

The frustrating thing is that I don't see much of the understanding, improving and addressing. A good example is the whole question of employment. I've lost count of the number of threads where those of us who give constructive advice are shouted down by people who believe certain jobs (invariably in retail for some reason) are 'beneath them'.

 

I feel that there are many adults posting here who say they want certain things out of life...but then shout down those of us who have actually achieved many of those things, as though we have no idea what we are talking about

 

Bid

Edited September 13, 2011 by bid

[Mumble]

My idea of the positives of autism? People like my adult son, Pearl's adult son, Suze's lad with his tractors and his brilliant post a few days ago...these are all people with autism who are busy forging happy, independent, productive lives because they look outwards.

*Huh hum* *coughs louder* *points to self*

 

 

 

 

[littleplum]

But yeah, this forum is only "safe" if you are prepared to have every little word pulled apart, judgements made on a mere paragraph of your life, challenges for why you are here and the verification of any existing or not existing dx.

 

You have pretty well summed up my own thoughts upon reading what follows your post. It's the relentlessly negative tone of certain contributors that's most depressing.

 

Oh well, there's always the 'What's everyone's favourite films?' thread.

[bid]

*Huh hum* *coughs louder* *points to self*

 

 

 

 

 

Well, I had included you in my earlier post as 'one of the adults with AS I know personally'

 

It seems to me that it is a very basic of psychology that a positive, outward-looking approach to life and it's various challenges and problems is the most successful way to create a happy, positive life...

 

This approach has certainly worked for me, it was the parenting approach we took with my autistic son (and the other 3 too)...and of the other AS adults I know it appears to have worked for them too.

 

Possibly worth considering...

 

Bid

[Mumble]

Well, I had included you in my earlier post as 'one of the adults with AS I know personally'

Well how was I supposed to fathom that from your post? I have ASD you know, I don't understand what you write and what to think about it I've been wide-awake for the last 5 nights since you wrote that (even though I don't think you wrote it 5 nights ago and I only just read it... ) worrying intently about whether it included me and the possible negative ways I was being thought about if it didn't and the posible expectations I had to meet that couldn't possibly meet if it did include me... And then I started to worry about your 'know personally' comment, for what if you know or feel you know something about me that I dn't now you know or know myself?

 

Okay, I'll stop now. My fingers are hurting - it's the ASD from the sensory impact of them on the keyboard.

[baddad]

You have pretty well summed up my own thoughts upon reading what follows your post. It's the relentlessly negative tone of certain contributors that's most depressing.

 

TOTALLY agree with that one, lil plum, though I'm sure you and I have very different views about what constitutes a 'negative tone'.

Edited September 13, 2011 by baddad

[bid]

Well how was I supposed to fathom that from your post? I have ASD you know, I don't understand what you write and what to think about it I've been wide-awake for the last 5 nights since you wrote that (even though I don't think you wrote it 5 nights ago and I only just read it... ) worrying intently about whether it included me and the possible negative ways I was being thought about if it didn't and the posible expectations I had to meet that couldn't possibly meet if it did include me... And then I started to worry about your 'know personally' comment, for what if you know or feel you know something about me that I dn't now you know or know myself?

 

Okay, I'll stop now. My fingers are hurting - it's the ASD from the sensory impact of them on the keyboard.

 

Tsky tsky...you know we don't 'get' humour!!

 

And apologies for my pesky theory of mind assuming you would know I meant you too!

 

Bid

Edited September 13, 2011 by bid

[sesley]

I think everyone is either happy with themselves or not. Every human character has its troubles,I suppose we all wish we where something or someone else. For me my son is the person i adore,as he is and for who he is,a pill that could change him?what would i change?I can't think. There are things he has to learn,like thinking to say excuse me please,instead of trying to go through people or just because he does not want the telly anymore,he should not just switch it off Every human being is different and all your circumstances are different. The challenges we all face are just that and how we approach them or not in some cases.The ASD label explains things a lot to me for why and what and how.Its not a deadly diesease,but the people affected with it can be very vunerable,for things like the stranger danger worry,or crossing roads etc.Getting those things wrong can be deadly.They are all the things most human beings have to learn about.So my goal now is to have my son believing in himself and to be happy with his life.And thats by giving him as many good experiences and dealing with the bad as much as possible,so he is confident and can cope with mainstream life as adult.

[littleplum]

TOTALLY agree with that one, lil plum, though I'm sure you and I have very different views about what constitutes a 'negative tone'.

So it would seem...