The cure is there

[MelowMeldrew]

http://auslan-resources.blogspot.com/2007/...-of-autism.html While I don't expect manyhere to follow sign language, this is a suggestion that a woman in Australia 'cured' her autistic son, anyone read her book ?

[smiley]

Hiya,

 

Personally, i doubt very much that sign language has 'cured' the little boy - i would expect the sign language has enabled him and those around him to comunicate better - does that make sense??

 

I'm always very uncomfortable with the peeps who claim to 'cure' autism - but i'm all for the ones who have found 'the thing' that helps their child.

 

 

 

(edited 'coz i can't spell today!! )

Edited May 1, 2007 by smiley

[MelowMeldrew]

I'm deaf myself and use sign language daily, if it 'cured' autistics I'd be the first to know ! I've gone through this since day one and even BEFORE my son was born. The pros and cons of using sign language are widely discussed, basically most schools said not to use sign language AT ALL. Being deaf parents, there were additional issues involved, I had to fight our corner as well as our son's, it was a very difficult first 6 years. I abandoned my deaf peers and went 'hearing' to avoid daily clashes with supportive services and endless rows, and put considerable personal strain on myself doing so. They assumed of course deaf equals daft and dumb too, despite the fact I had a total hearing upbringing and a fair amount of adulthood with a hearing aid too, and my speech is as good as anyone's. We use sign at home because without it, my son would never communicate with his mother a born deaf sign user, I'd be damned to stop that to keep the system quiet. We taught him sign was for home AND SPEECH at all times, even when he uses some sign, and outside he used what every other child did, and he understood this and went with it.

 

As time passed and he was reluctant to speak despite having a good speaking voice, we had the 'oh oh deaf parents' etc again, then they eventually realized it was just him being autistic. We knew his 'quietness' had nothing at all to do with having a deaf parent or a poor voice box or ability, it was his autistic TRAIT. 99 out of a 100 parents of an autistic child will have hearing, so are they to blame for a quiet child too ? The whole assumption was ridiculous and it came from 'experts' looking for an excuse for something they couldn't understand, and refusing to accept a parental view. Let's 'blame' parents, they're bound to be doing something wrong !

 

There ARE concerns I've had, that using sign language in isolation was not the way to do things, so I have never done that, so still don't, I don't want to end up quiet as well ! At home we get sign and speech daily from our son, at school, they are lucky to get a conversation once a week, that is because he chooses when or not he wants to, and it has nothing to do with ability, like other parents with the same issue, we're all working at this. His ability via other observations seems quite considerable, they can't seem to get this out of him. They'd say "Do you know what this or that does/mean ?", he will just nod yes or no, end of..........

 

Whether sign language at school would help NOW, I don't know, as even autistic schools are still jumpy about it. It's NOT a cure, and being deaf I've read every hype about sign language written, from teaching hearing children more effectively, to curing autism, to curing just about every known language issue or impediment ever discovered... I don't buy it, perhaps used with other means it might HELP, but each child is different, and it could well fail too. I doubt many autistic children have had such exposure to sign language as mine has, how many parents here are BOTH deaf ? sign language hasn't 'cured' him yet.... The danger is a hearing child like an autistic, emulating a deaf person, that was our biggest fear, and something I worked at every day of his life, I've had little time to be 'deaf' really... and been forced into situations very very few other deaf people would ever attempt. You do that for your child.

[Bullet]

I use a fair amount of Makaton with Tom. It's been really good for helping him to understand.

Edited May 7, 2007 by Bullet

[MelowMeldrew]

Makaton isn't sign language, there's a considerable difference to what deaf people use as a daily form of communication.

[Lucas]

There's cures in them thar hills!

 

The dispiriting and pointless quest for a 'cure' really does remind me of the crazy old prospector stereotype. They find gold, now the value of gold goes down to account for it and the more gold they find, the more worthless it becomes. In the end they're just sifting through dirt and murky water and any value in what they're looking for is purely in the mind.

[MelowMeldrew]

As we write an operation to try out e gene therapy to 'cure' a form of blindness is already underway Lucas. There is no real way to delay this medical 'progress', and parents here seem to be in favour generally as well. All these debates are hypothetical and pointless really UNTIL, something really does occur. I suspect nobody over a certain age will go for the 'cure', but... pre-birth or immediately after ? and of course adults not happy the way they are too. Like deafness, no real 'cure' YET, but many researches are already in the pipeline. We can't stop it. All the adult can do is say, not for me thanks. Genetics offers real inroads into many 'issues' the potential really is out there Lucas, and being realised.

[Lucas]

I don't consider ethics to be hypothetical at all. Hyperthetical examples are used to explain ethics, just as hypothetical examples are used to explain very complicated science like Cosmology, this does not make them hypothetical.

 

Gene therapy I don't mind; it's not the same as detecting 'wrong' genes pre-birth and then making sure no one with those 'wrong' genes is ever born. But science without ethics is useless to all but the unethical. Adults can say "Not for me", but that doesn't stop some from making sure adults of a 'wrong' and unacceptable nature don't exist in the first place.

[MelowMeldrew]

Ethics and morals, will lose hands down every time to free choice Lucas. Personal perceptions aren't open to intellectual debate sadly.

[Lucas]

That is utterly contradictory. Free choice doesn't exist without morals. Coercion is rampant when science advances to the point of eliminating the existence of certain types of people without moral restraint, as has happened in parts of history and still horrify us when we look back on them in hindsight.

[MelowMeldrew]

That is utterly contradictory. Free choice doesn't exist without morals. Coercion is rampant when science advances to the point of eliminating the existence of certain types of people without moral restraint, as has happened in parts of history and still horrify us when we look back on them in hindsight.

 

Science offers the CHOICE, today if ONE person chooses to take it, it makes no difference if 20 others think it morally or ethically wrong, such is FREE CHOICE 2007. Daily pregnant mothers take folic acid and other supplements/tests to try to ensure best they can their child is 'healthy' and able... nobody turns a hair at this, yet, it could be argued they are ensuring a disabled child doesn't happen, and many disabled are arguing this is wrong. Morals and ethics are breaking down daily, it isn''t affecting choices. There are many who think why have them ? it stops me making a free choice. One man's moral is another man's barrier.

[Lucas]

Sorry, until you live with the affects of permanent and pervasive coercion everyday, I can't say anything to you that you'd begin to understand.

[baddad]

Sorry, until you live with the affects of permanent and pervasive coercion everyday, I can't say anything to you that you'd begin to understand.

 

Lucas, I'm really sorry, but that sounds to me like a cop-out... If it isn't then you by definition will have to accept that you cannot possibly begin to understand or appreciate - and therefore have no right to comment upon or challenge - the views and opinions of any parent of an autistic child. I think you are being patronising. I hope you will appreciate that's not a comment on your overall views - just on the 'gainsaying' nature of your last post...

L&P

 

BD

[MelowMeldrew]

Lucas, I'm really sorry, but that sounds to me like a cop-out... If it isn't then you by definition will have to accept that you cannot possibly begin to understand or appreciate - and therefore have no right to comment upon or challenge - the views and opinions of any parent of an autistic child. I think you are being patronising. I hope you will appreciate that's not a comment on your overall views - just on the 'gainsaying' nature of your last post...

L&P

 

BD

 

 

Quite so, and do not profoundly deaf people also get this too Lucas ? I'm not offended personally I've been patronised by the best there is

[Lucas]

My point Baddad was that I don't think MM knows what morals and ethics are. It occurred to me after reading:

 

Morals and ethics are breaking down daily, it isn''t affecting choices. There are many who think why have them ? it stops me making a free choice. One man's moral is another man's barrier.

 

It isn't true and totally inocculates MM from being influenced by any moral arguement. So why have a problem with my 'cop-out' but not this one?

[Mumble]

Lucas,

 

I think MM does know what morals and ethics are, but these are very difficult terms in practice; it is one thing to define them in principle but to apply them to often very difficult and emotive cases where there isn't a clear cut right/wrong answer and you need to balance up potential harm against potential benefit. This is why universities engaging in often ground-breaking research have independent ethical committees which have to approve all applications for research. This often seems an arduous, unecessary and seemingly petty exercise, but it takes someone removed from the project who would neither benefit or be harmed by it, to judge whether it is ethically sound.

 

Whilst morals relate to the principles of right and wrong behaviour, they are individually determined and culturally specific. Whilst 'bigger' morals are likely to find shared understanding, other groups will have very different ideas about right and wrong based on their enculturation. Neither is right or better than the other. Therefore, when MM says that:

One man's moral is another man's barrier.

she is entirely justified for all that is being said is that people having different cultural identities (and I use culture here in the widest sense) have different ideas about right and wrong and these may at times clash against each other.

 

Ethics on the other hand relates to the application of these moral principles and their role in the guidence of an individual's behaviour. These have to be determined by the application of a 'greater good' argument; there is no legal right or wrong on which to rely which is why they are judged by independent panels.

 

I think what I am trying to say is that everyone's cultural identity is made up of several different 'parts' interacting in infinate ways. This is what makes humans (NT, AS, black, white, hearing, deaf, female, male etc. etc.) unique. As we are all unique we will all have different takes on what is morally defensible. It is a lack of understanding, or more often an unwilingness to accept this, that leads to prejudice as people pick on things that are different, unfamiliar and not 'normal' to them.

 

Mumble.

[Lucas]

Mumble, because morals do precisely deal with what is right and what is wrong, the truth to them is in no way influenced by their popularity or cultural acceptence. If something is wrong, it is wrong, the fact that some people have a different view does not change it, it merely highlights that what is right is often inconvenient to those who are not vulnerable and likely to suffer from absence of ethics.

 

Popular social norms do not determine right and wrong, merely who benefits and who suffers when morals and ethics are not there to prevent the powerful majority of wolves from eating the sheep. If Autistic people were wholly dominant, only morals and ethics would protect the Neurotypical minority. It is very easy when you are not vulnerable to believe morals and ethics are anathema to freedom, but it's only YOUR freedom you're considering when you think this.

 

Autistic advocacy is where Deaf advocacy was a hundred years ago. It is VERY easy for MM to say what MM has said.

[baddad]

Mumble, because morals do precisely deal with what is right and what is wrong, the truth to them is in no way influenced by their popularity or cultural acceptence.

Popular social norms do not determine right and wrong...

Autistic advocacy is where Deaf advocacy was a hundred years ago. It is VERY easy for MM to say what MM has said.

 

Morals are a social concept - nothing more nothing less. There are no morals without a culture to follow them. 'Right' and 'wrong' are no more fixed - what is 'right' in one culture may be wrong or irrelevent in another. Wars are fought over such distinctions. Popular social norms DO define what is right and what is wrong, which is why laws have to change to accommodate new social concepts of right and wrong. If that didn't happen then all of the hideous prejudices that existed in the past would still be enforced today, because advances in social understanding would not have been acknowledged or accommmodated by the old 'rules' that didn't acknowledge them.

Anyone who claims to know the absolute truth is, IMHO, either delusional, dangerous or both.

'Truth' changes all the time, based on evolving knowledge and wisdom. When we know everything, evolution (of knowledge/morals/ethics et al) will cease. Until that time we are all in the same (rudderless) boat.

I have no idea what 'autistic advocacy' is - to me it seems to be a small minority of high functioning, uncharacteristically articulate autistic people making assumptions that their perception of autism is an absolute, with no more basis than non autistic people using medical models to make the same claims. I think that's presumptious and wrong. It's like somebody with a broken finger claiming insight into the world of a paraplegic: The distance is too vast for any such assumption to be made.

Making claims about 'fixed' moral and 'fixed' ethical truth implies stagnation of thought and social growth. By definition, it kills 'difference' and any advances in thinking to accommodate and accept it. That's a closed route to empowerment in my estimation.

He's not often quoted for his serious stuff - but i'll go with good old Spike Milligan on this one:

 

Seek truth, they said

All that I find;

The seed is lost

The ploughman -

Blind

 

L&P

 

BD ( who has ABSOLUTELY no idea about any absolutes - moral, ethical or otherwise - whatsoever!)

[Mumble]

Thanks, Baddad. I hope I didn't offend anyone - that certainly wasn't my intention. All I wanted to do, because I felt the thread was moving away from its original point, was explain morals/ethics as I understand them from an academic viewpoint looking at them as a social/cultural concept. I totally agree with what you say above about this Baddad.

 

to me it seems to be a small minority of high functioning, uncharacteristically articulate autistic people making assumptions that their perception of autism is an absolute, with no more basis than non autistic people using medical models to make the same claims.

I'm a bit unsure about the 'uncharacteristically articulate' in this Baddad - I am articulate (at least in writing - though not in speech), but I am still very much autistic. I am not less autistic, or somehow less worthy of support, because I am able to articulate something about me (although if people take the time to assess my 'articulation' they find distinct differences between myself and a NT). In some ways (and again, please, I do not mean this to insult anyone, my difficulties are different and at times extreme, purley because people expect me to be 'normal'. I do however, not make any assumptions about other autistic people based on my experiences. I can no more know what life is really like for my brother (ASD) than I can for other autistics or any NT I pass in the street. I sometimes get annoyed at someone I know who reads lots about Asperger's and thinks she understands me. I have no more understanding of other autistics than she has of me. My perception of autism is my own, based upon my own experiences of growing up and knowing I was slightly different and then on having this 'difference' confirmed as an adult. Where I have used my experiences and perceptions in answer to different threads on this forum, all I have wanted to do is share my understanding in the hope that parts of it might help others to begin to think more broadly and parts may help some people to understand others better. I hope I have never come across as saying my experience/perception of autism is what autism is - if I have I can only apologise. But please don't think that because I come across as articulate I am trying to say anything about the right way of being or understanding autism, but also please don't think that my experience is in any way 'inferior' because I am articulate.

 

On a lighter note, I like a lot of Spike Milligan's stuff, but I have no idea what that part you put in is about!

 

Mumble.

[Lucas]

I have no idea what 'autistic advocacy' is - to me it seems to be a small minority of high functioning, uncharacteristically articulate autistic people making assumptions that their perception of autism is an absolute, with no more basis than non autistic people using medical models to make the same claims.

 

Everything Baddad has said to me in the past now means dirt after reading this. I don't think I can stay here anymore. I can only leave this and hope a bit of sanity gets through.

 

[baddad]

Hi Lucas - I'm genuinely sorry you feel that way. I don't think I've said anything that contradicts my last message, or said anything I haven't previously expressed, so maybe i've just expressed it badly this time(?).

I have viewed this link you've posted several times in the past, and I think it's very empowering, emotive and enlightening - it is, however, still one persons experience of autism, and - regardless of the medium used to inform - it is a very ariticulate and well delivered message.

 

When I said I don't know what autistic advocacy is I meant exactly that. I would have believed every parent on this forum to be an advocate for autistic people - they perform that job on a daily basis. I would believe every professional to have worked in the field from Kanner/Asperger's Initial recognition of diagnostic features to be an advocate of autistic people. I would believe all those autistic people who can articulate their perspectives on autism to be advocates for autistic people... I'm in no way claiming they are good or informed advocates (or making any negative claims either), but they are all taking/fulfilling that role...

That doesn't appear to be the advocacy being talked about here though - we seem to be discussing self-advocacy. Self advocacy to me means exactly that; a person voicing, or being helped to voice, their own perspectives, feelings and needs. Achieving the latter (helping someone to achieve that) demands a degree of 'distance' that I do not generally see where those doing the supporting view the subject matter as a moral, ethical, political or religious crusade. That applies whether the 'crusaders' arise from within or from outside of the group they claim to represent

The problem in both cases is fundamentally the same: The rights of others (both within and outside of the 'group') to disagree are more often than not denied, and often the terms used to define those who disagree are in themselves abusive ('uncle tom', and all of the other varients used in minority groups that imply moral cowardice, ignorance, invalidity of perspective or victimisation via some sort of agenda of indoctrination).

When I say I do not know what autistic advocacy is I mean I cannot distinguish it (in that form) from any other form of advocacy that denies individual freedom of choice in favour of a collective agenda based on the ideology of the few. It's irrelevent if the 'few' are autistic or NT

 

Mumble - No, you didn't offend me at all. I wasn't talking about autistic people (or NT people for that matter) sharing their experiences - that is hugely important.The kind of advocacy i was talking about was the 'closed' variety that disregards alternative perspectives and points of view. I hope i've made that clearer with the above.

Offering my own thoughts on another issue you raised, though...

While I accept and agree that labels like high-functioning and low functioning are dangerous and often counterproductive, I think we have to be careful not to take a 'generalised' view of autism too far the other way... Possibly you cannot measure the degree of someones 'autism' on the basis of their ability to cope and live independently, but certainly this has a very direct correlation with the degree to which they are socially disabled, and that's what real advocacy should be about. Disabilty is primarily a social construct - and disabled people have lobbied/fought for years to get that recognised and accepted. By definition, those who are more socially able - whether through personal coping strategies, support networks, intellectual ability - are less profoundly effected than those who do not have those resources.

Whether that is a 'direct' measure of autism or not is a moot point - a distinction between the two groups does need to be made (regardless of any disagreement over wording) to ensure that the bigger picture isn't lost and resources are targeted appropriately.

The 'models' in use are undoubtedly flawed, and are undoubtedly based on neurotypical 'ideals', but they do at least take personal ability and experience into the equation...

A wealthy and respected American black man may share the same coloured skin as an uneducated and opressed African famine victim - that doesn't make their 'experience' the same.

George Michael (or any other gay man living his lifestyle in his social circles) does not face the same challenges as a man with the same sexual orientation living in a repressive and homophobic society that views his sexuality as 'criminal'.

A profoundly disabled autistic person with no expectations of life without round the clock, residential support does not have the same perspectives or opportunities as (i.e.) Bill Gates or any other silicon valley savant, and is not in that position purely as a result of not having developed the same 'coping strategies'. They are two completely different realities (as you yourself have acknowledged - my worry here is that others don't always take that wider view). Whatever you choose to call it, the differences are real, and the distinctions need to be made. Neither should be denied the support they need and neither should be devalued because of their difference, but the differences should be acknowledged.

While I agree with the sentiment that autistic people 'are' rather than 'have' autism, I don't think they are any more defined by their diagnosis than 'neurotypical's' are by their non-diagnosis - there is a huge diversity that is completely undermined if either group is only viewed in terms of absolutes.

I'm 100% for removing prejudices, preconceptions, pigeonholes & labels - I'm fairly convinced that everyone else using the forum has a similar point of view. I hope one day to see those things replaced with real, individualised and holistic responses to the person needing support rather than with new variations on the same themes.

 

Finally, Lucas -

 

I hope you will continue to be an active partcipant on the forum. I've said many times that your input and insight is greatly valued here by myself and every other member. That does not mean I will waive my right to disagree with you because you do not recognise my 'ethical' or 'moral' validity to do so.

 

L&P

 

BD

[bid]

OK...entering this debate with no small degree of trepidation

 

Surely there are as many 'voices' of autism as there are autistic people?

 

The support, understanding and advocacy I need for my autism (DH doing the phone calls, understanding at work over the muddles I get in, family understanding over the things I get agitated about, etc) is hugely different to the support, understanding and advocacy that the people I work with need (many of them are non-verbal, and most have severe learning difficulties and will always need to live in a highly supportive, protective residential environment).

 

There is no denying that we all need support, understanding and advocacy, but in my opinion it would be hugely wrong to deny the differences in our respective needs. Equally, our different experiences of autism can in no way be comparable, and to do so, again in my opinion, would be at best patronising and at worse devisive.

 

Running away to hide now!

[Bard]

Everything Baddad has said to me in the past now means dirt after reading this. I don't think I can stay here anymore. I can only leave this and hope a bit of sanity gets through.

 

 

 

Don't leave Lucas, debate and clarity is impossible if there are a restricted number of opinions available.

I really think that this is a valuable discussion, and you have ideas and perceptions to contribute.

 

Like Baddad wrote

I hope you will continue to be an active partcipant on the forum. I've said many times that your input and insight is greatly valued here by myself and every other member. That does not mean I will waive my right to disagree with you because you do not recognise my 'ethical' or 'moral' validity to do so.

 

Disputing an argument is not rejecting the individual that makes it.

[Mumble]

There is no denying that we all need support, understanding and advocacy, but in my opinion it would be hugely wrong to deny the differences in our respective needs. Equally, our different experiences of autism can in no way be comparable, and to do so, again in my opinion, would be at best patronising and at worse devisive.

 

Bid - Thanks, I think you've managed to say in fewer words what I was trying to say in too many words. I'm sorry if it has ever come across that I think, because of my Asperger's diagnosis, that I know everything about how every autistic individual perceives the world. This is entirely the opposite to what I have been trying to say. I do not know, and I never will know. I can't apologise enough if I have ever come across as saying 'I know' or 'my knowledge is better' or if I've used my autism as a way of saying I know better than the parents of an autistic child. I don't - I can only offer my perspective.

 

 

Baddad, whilst I follow your argument, and as I've said above, I apologise if I've ever come across as thinking myself better in some way (because I don't), I do have an issue with one point:

By definition, those who are more socially able - whether through personal coping strategies, support networks, intellectual ability - are less profoundly effected than those who do not have those resources.

I could debate with you for hours about how you define 'intellectual ability', but I'm assuming that you're referrring to someone like myself. Doing what I am doing does not make me more 'socially able'. I don't in some way get rid of part of my autism simply by virtue of 'intellectual ability'. I struggle daily with the 'non-intellectual' aspects of university life to the extent that I will often end up exhausted and in tears simply through the constant struggle to present some semblance of normality to get me through the day. I miss out on a huge part of what would be counted as 'daily-life' within the university department because I am not 'socially able'. I have further social demands placed on me, and expected of me, because of the environemnt I am in. I cannot fulfil these demands. I am in tears writing this, because you, as someone I thought understood, have done exactly what others do to me every day - they conflate intellectual ability with 'general' ability which includes social ability. It is assumed that because I can write intellectual papers I must also, as you have it, by definition, be able to discuss these socially, to attend informal discussions, conference socialising events, meals, just discuss with people in the corridor. I can't do these things, and I hate myself for not being able to do them. I would love to be more socially able because of my 'intellectual ability' but I am not. My autism does not affect me less profoundly because of intellectual ability. More is expected of me, but I am able to do less of what is expected. I hope that with support I will be able to develop some coping strategies which will allow me to function on a social level; but even in this case, my autism would still be there. Standing in the corner of a conference room, trying not to be noticed and fighting my natural instinct to run out of the room is hardly being socially able. Having a meltdown at a large railway station because I can't cope with the social demands of a day away from the university environment I'm familar with is not socially able. Please do not assume that one compensates for the other - it doesn't work like that. An appearance of coping is not coping and the longer an act has to be put on because it is assumed you must be coping because your academic work is fine, the bigger the fall when the act fails and I can no longer cope.

[curra]

Lucas,

don't leave the forum!

I enjoy reading your posts and I agree with you that ethics are not hypothetical. Discussing ethics can lead to a long debate as we are all entitled to our opinions and as individuals we will have different views which shows that morals also have a lot to do with individual judgement and not only with prevailing ideas in society. I'll try to make my point very simply because I like simplicity: If laws were passed to make paedophilia, murder, rape, domestic violence etc legal, these actions would still not be right and would not stop being wrong. Laws can only make things legal depending on political majorities but they can't change morals.

 

It's just my opinion and I hope I'm not slammed for expressing a view.

 

Curra

[barefoot wend]

I also have to add that I would be most upset Lucas if you felt that you had to leave the site.

 

Please stay.

 

Barefoot

[baddad]

Hi again -

I'll try to keep this brief if I can - i am aware that i can go on a bit!

Mumble - from the quote you've highlighted you've picked one item from a list of three - intellectual ability... I wasn't in any way arguing that the difference was one of intellect.

What I was saying was that the more able are, by definition, less disabled. I understand completely how difficult and complex that social interaction is (how could I not? I see it and live it every day) and that having the skills to negotiate that implies all sorts of new difficulties, challenges and stresses. Those stresses, challenges and difficulties are not the same, though, as those faced by someone who does not possess those skills or is unable to negotiate, and the two realities do not bear comparison. You have acknowledged that distinction yourself, both directly in your own posts and in your response to bids. Perhaps 'social ability' is the wrong term, but if I use something different like 'social adaptation' that's possibly equally open to misinterpretation(?) I hope nobody reading the whole text could interpret that to mean i'm suggesting autistic people should learn to 'adapt' - that really would be a 'spin too far'...

 

Curra - I'm sure that's not how you meant it, but for anyone reading your post rather than the whole thread there is the potential for misinterpretation...

I wouldn't want to see anyone slammed for expressing their views either

 

L&P

 

BD

[Mumble]

What I was saying was that the more able are, by definition, less disabled. I understand completely how difficult and complex that social interaction is (how could I not? I see it and live it every day) and that having the skills to negotiate that implies all sorts of new difficulties, challenges and stresses. Those stresses, challenges and difficulties are not the same, though, as those faced by someone who does not possess those skills or is unable to negotiate, and the two realities do not bear comparison.

 

Baddad, I really don't want to get into an argument here - I only entered this thread because I thought I had something useful to say from my understanding of the meanings of morals and ethics. I'm not entirely sure how that turned into a dicsussion of the understanding of one another. It is probably highly likely that I have misinterpreted you - but that's what I do, and whilst I can only apologise for it, it does irk me that I should have to apologise - I am in effect apologising for my disability.

 

I do not, for one moment, reject that autistic people have very different experiences. My brother has Kanner-type autism and requires 24 hour care; I have Asperger's and live (fairly) independently at university. Our experiences and our abilities to act at social interaction are of course completely different - as are the experiences and skills of every autistic and NT individual. What I take offence at, however, is the implicit assumpion in your above quote - if some don't possess those skills, it suggests I do and that I am not using them. I have academic writing skills, I do not have social skills - they cannot be conflated and as one develops the other doesn't. Believe me, if I had the skills and was able to negotiate, I would be doing this. More able autistic people are not by definition less disabled. Autism is not a learning disability.

 

Mumble.

[bid]

What I take offence at, however, is the implicit assumpion in your above quote - if some don't possess those skills, it suggests I do and that I am not using them.

 

Oh Mumble, please don't think that <'>

 

I hesitate to speak for another person, but I really don't think BD meant that at all

 

I have known him well for a few years now, and I have been in social situations with him where I have completely shut down and he has never been anything but supportive and understanding. He has never suggested that I am not using social skills I really possess.

 

If I can criticise him for anything, it would be using 23 words when 6 will do!

Edited May 7, 2007 by bid

[baddad]

I'm sorry mumble, but you have misinterpretted me: I'm not saying you possess those skills and don't use them i am saying you do have such skills and do use them. You are quite eloquently communicating your experiences, your perceptions, your difficulties to me through this forum. For a vast majority of autistic people that is not an option. I'm not 'not seeing' or negating or denying the impact that autism has on you in any way...

From my own post you've actually done exactly what i asked people not to do:

 

Perhaps 'social ability' is the wrong term, but if I use something different like 'social adaptation' that's possibly equally open to misinterpretation(?) I hope nobody reading the whole text could interpret that to mean i'm suggesting autistic people should learn to 'adapt' - that really would be a 'spin too far'...

You do not have to apologise to me in any way because you haven't offended me, but likewise I feel I've caused you some personal offence over an observation that was in no way intended as a personal comment. So I apologise too......

As I said in the earlier post -I see and experience the effects of the kind of social and value judgements you're talking about every day of my life. As the father (and advocate) of an 'HF' autistic child trying desperately to come to terms with his difficulties in a world that wants to 'blame' him rather than support him, to devalue rather than empower him and to debarr rather than admit him I am fully aware of the implications. Having said that, I cannot compare my son's reality with that of other autistic people who will live their lives in institutionalised seclusion with round the clock support, who have no means of expressing their anguish, their fear their wants and their needs, their happiness, their joy etc other than through physical demonstrations or through the interpretations made of those actions (correct or otherwise) by the support networks placed around them. That, by the way is no value judgement on the quality of their lives - I wouldn't assume that sort of 'insider' knowledge - and it is certainly not a value judgement on their status or validity. It is purely a recognition that their problems are not the same as my sons, and their shared diagnosis does not imply a shared level of 'disability'.

Sorry Bid, thanks for the support but me and my big gob have done it again... 23 words to 6? I think my word count has just gone UP again!

 

L&P

dx

[Bard]

Perhaps it's your inner Clunge Ambler expressing itself

[bid]

Actually, to be fair there's probably loads I could criticise about him, but I shall err on the side of discretion!

[Mumble]

I'm not saying you possess those skills and don't use them i am saying you do have such skills and do use them. You are quite eloquently communicating your experiences, your perceptions, your difficulties to me through this forum. For a vast majority of autistic people that is not an option. I'm not 'not seeing' or negating or denying the impact that autism has on you in any way...

From my own post you've actually done exactly what i asked people not to do:

I'm really really upset by this post Baddad . I don't understand what I have done wrong that you have asked people not to do - I've read and reread your posts and I can't find anything I've done that you've told people not to do. You can't presume that I have social skills because I can write eloquently on this forum. My writing skills in no way correlate with my verbal and/or social skills. Were I having this discussion as a conversation with you, I would most likely be completely mute, in tears and wanting to run away from the situation. It's a Bank Holiday - the other students are out in groups doing things with their friends or laughing and enjoying themselves in groups in various communal areas. Me? I'm sitting crying in my room and wishing I had someone I could share part of my day with. Tomorrow, my research group will go out for a drink after our discussion group. Although they'll invite me and encourage me to go, I won't be there because I am too damn terrified of the social interaction and the sensory input. Wednesday is my birthday so will I be out celebrating and drinking in the way students are expected to celebrate their birthdays? No, I'll be in by myself because I don't have anyone to celebrate with because my skills in social communication and understanding are so poor I can't maintain any relationship. I hate being so alone, and I'm sorry if this sounds like self-pity or what ever you NT call it because it's not. I just want people to understand that appearances can be deceptive and to realise that whatever act I put on, this act in itself is not 'social skills'. I would love nothing more that tomorrow to be able to say to my tutor, 'yes, I'd like to join you for a drink', I would love to be able to have some degree of success in the non-academic aspects of my course rather than being ignored by people because I don't quite 'fit in' and because I appear more obsessed with my study than having a social life. I do this purely because I don't have the skills to partake in the social aspects alongside NTs. The fact that I can write about how I feel means I have skills in just that - writing: it doesn't mean I have skills in verbal explanation or social being.

 

Mumble.

[smiley]

Mumble <'> <'> <'> <'> <'> <'> <'> <'>

[elun1]

Mumble

Just wanted to add a viewpoint as I think (I hope!) I get what Baddad is trying to say. I have 2 ds's. Ds 1 is supposedly nt, vv bright BUT has difficulties with social interaction and is constantly in trouble. He is as yet undiagnosed. Ds 2 is severely autistic and has severe learning difficulties. He is So profoundly affected that he in fact is completely unaware he is different. Without experienced support his whole day would be spent rocking, jumping on the spot etc. His whole world is autism. He uses echolalia to communicate. He is unable to have a conversation or to express his feelings in any other way at all. He is incontinent and requires 24 hour care. He will always require 24 hour care and I will have to leave this world just hoping that no-one takes advantage of him and abuses him. Which child is more profoundly affected by autism?? Well IMHO ds 1 'suffers' more as he doesn't understand his difficulties yet BUT with the right support he will take his place in the world. For ds2 he CANNOT and never will have the social understanding to walk down a street unattended let alone attend college. I am NOT saying your life is easy, how could I when I look at how ds1 struggles. BUT ds2 is more PROFOUNDLY affected.

Don't know if that helps, maybe not but I think I could see what Baddad trying to say and perhaps my experience might help a bit as my 2 ds's at opposite ends of spectrum

Love Elun xx

[LizK]

I think I understand what Baddad and Elun amongst others are trying to say that the experiences of people at opposite ends of the spectrum are very different. I for one think there has to be some arbitrary way of describing where individuals are on the spectrum because the needs of my relatively high functioning son are completley and utterly different to those of an individual further along the spectrum or with an associated global learning difficulty. In practical terms his needs may not be so great in some ways ie he doesn't need a wheelchair, he is toilet trained, can easily communicate his needs, he is affectionate but in other respects his needs may be greater as he will be expected to maintain himself in a neurotypical environment, attend mainstream school, get a job, form relationships, become a parent even something a more 'severely' autistic child would not have to cope with. I don't think you can necessarily put a a value judgment on a persons degree of impairment simply by their place on the spectrum. I went to a workshop recently where Luke Beardon, Senior Lecturer in autism spoke (he's am amazing speaker btw, if you ever get the opportunity to listen to him then don't miss it) and he was saying how he thought high functioning individuals are often the most disabled because of the anxieties they live with on a daily basis and the sometimes herculean efforts they have to put in to fit into a NT world and illustrated it with several examples that really brought his point home

 

Lx

[Mumble]

Elun & Liz - Thanks, that does make a lot of sense, I just didn't realise that that was what Baddad was trying to say. I'm a great one for misinturpretation and then I get myself really upset and worried and then misinterpret further. It will probably sound horrible, but I sometimes find myself I think jealous of my brother because there is no pressure on him to 'be' in the NT world. It's just accepted (whether that's right,wrong or otherwise) that he requires 24 hour care and that he will always be apart from the NT world. Anxiety is my worst enemy, and Liz, your post about the expectations of a NT environemnt makes sense to me - there are no excuses because people assume me to be just NT and odd, unfriendly, unapproachable, rather than as having a disability.

 

Baddad - I'm sorry, I got myself very worked up over having done something wrong which in turn made me more upset over everything else.

 

Smiley - Thanks. <'>

 

Mumble.

[Bullet]

There can be a lot of assumptions made regarding how a person is in real life based on their writings on an internet forum. To say a person is more, or less autistic based on their writings - and on what they write about - is highly erroneous and, to be honest, rather dangerous, as people who might need support and help with things may be persuaded they are too high functioning and shouldn't think they need help. Most of you, I think, upon reading my posts and looking and seeing that I am married with children would presume that I am rather borderline with my AS. The truth is more complex. I was noticeable enough as a child to be noticed as different and attempts and suggestions made to have me assessed. I have very poor self help skills. I have walked backwards into a busy carpark without checking for traffic (last month). I have had to have my mum cut my hair at the age of 19 as I didn't know to brush it when I left home. I have had my weight drop to an unhealthy level because I didn't know when to eat, or to eat properly, or to ask for help to eat properly. I walk past people I know regularly because my eyes will be looking at the writing on a bin, or at a window sill, rather than moving objects around me. I have never had a proper chat with a friend on a phone, the friends I do have I communicate 99.9% of the time via email. I have selfinjured, sometimes just because (not out of a wish to hurt myself, just because). I twist my fingers and flap my hands, pace up and down, mutter to myself and repeat long conversations to myself. I chew on my fingers (not hard. I will tell dh how to sit, how his hands should be placed on the settee, how his feet should be placed. If I ask him to do something and he doesn't respond immediately I will ask and ask again. When I was diagnosed I was told the main reason I had coped so far was because I had never tried to fit in with other people.

Going back to the original comment I do not wish for either myself, or Tom, to be cured. I would like my son to be able to tell us what he wants - however that comes about - hence the Makaton, but a "cure" would change our whole way of thinking and perceiving things and I would hate that.

[tsmom]

mumble <'> <'> <'>

happy birthday for wednesday

[Lucas]

I'm posting one last time.

 

I have shown Baddad a youtube video made by a person who was institutionalised, needs extensive support, has been descibed many times as 'low functioning' by many people and communicates mostly through actions requiring interpretation. Baddad dismissed what this person had to say, basically on the grounds that the person was even capable of saying it at all. This happens all the time. Autistics, no matter how low functioning and disabled they are called persistently refuse to comply with the demand that they are non-communicative and are then dismissed because they are no longer in the catagory they were previously assumed to be in and can no longer be compared with others from that catagory that so obviously need someone, preferably non-Autistic to speak for them.

 

I have viewed this link you've posted several times in the past, and I think it's very empowering, emotive and enlightening - it is, however, still one persons experience of autism, and - regardless of the medium used to inform - it is a very ariticulate and well delivered message.

 

The fact that Baddad tells me this only says to me that he clicked the link, watched and listened, but didn't hear a word. Maybe it required a Neurotypical to translate. If he had actually bothered to acknowledge what was said he would know it was not at all intended as one person's experience, it wasn't even meant to focus on her own personal experience, but let's not let what an Autistic says get in the way of what non-Autistics think they say or should be saying.

 

Nothing but ethics protect this person, who could only protest with violence at treatments forced on her in the past and could only do so again in the future, but communication in this way is unacceptable and dismissed. They are not mallable and subjective just because people had different perceptions of them in the past and may have different perceptions of them in the future. The attitude people have to morality and ethics say more about those people than it does about morality and ethics. Consistently, those that show contempt for ethics and morality also show contempt at the way Autistic people communicate and feel the need to justify their disgusting standards by seperating those capable of saying no from those who can say no but are easier to ignore with all kinds of invisible lines drawn between them.

 

This kind of thinking has infected the forum, so I'm not staying.