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I may be autistic, but I still have a brain and know when I am being insulted. I do not have a Luddite approach - I am not scared of, fearful about, or standing in the way of technological change. The issue here is not about genetic screening (see genetic screening thread for that interesting discussion), it is (or rather has become) whether an autistic life is one worth living and who (if anyone) has the right to make that decision. Making the decision that your own life is/could become unbearable and deciding to end it (through, for instance, an advanced directive) is very different from making a judgement about another person's quality of life. Just because an individual makes things harder for others or doesn't fit what was hoped for/expected doesn't mean that the individual's life is, in itself, of some lower quality.

 

I never intended any personal insult but I should perhaps have expressed myself more carefully. However, I stand by the essence of what I said: woman already have that power, I don't advocate and neither do I forsee that power being taken from them. If research ends up, in effect, giving them the choice of terminating those pregnancies which do or even may involve a child on the autistic spectrum then the only way to try and minimise that adverse event is as I already stated in my previous post. I'm not getting into any further argument as I've expressed myself as clearly on this point as I possibly can.

 

janine

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But the fundamental difference there is that you are talking about your own life, not the life of others.

 

Hi.I do not disagree Mumble.However I did think it worth adding that even where the issue is the choice to end life as in euthanasia the situation is very complex.In the recent debate one of the major concerns expressed was that even where it is an individuals own life it is very difficult to rule out the risk that vulnerable individuals will be influenced by others based on opinions on the value of life.Karen.

 

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Professionally I care for children with the most severe and complex needs, both medically and developmentally. I also helped to care for my dad when he was suffering and then died from dementia.

 

I have always had the strongest belief in the intrinsic value and importance of every life, and experience that daily in my work.

 

Bid

 

Sorry, I missed this post earlier. I respect your view but it isn't how I feel personally. The law respects your view and that's why we do not have euthenasia. I fully understand why the law is this way and the tremendous issues involved but it isn't how I feel.

 

I personally would never have considered abortion on any grounds but for a physical condition incompatible with life beyond infanthood however... If I had two children already (as I do) one with special needs (as I do) and then my husband died (as he did) then had I found immediately after that I was carrying a child likely to be profoundly low functioning (which no test available at the moment could tell me) or say the child had downs and a serious heart defect (which tests currently available can show) then I would move the goalposts. Circumstances are significant as well as the condition involved - there are no absolutes.

 

janine

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Hi.I do not disagree Mumble.However I did think it worth adding that even where the issue is the choice to end life as in euthanasia the situation is very complex.In the recent debate one of the major concerns expressed was that even where it is an individuals own life it is very difficult to rule out the risk that vulnerable individuals will be influenced by others based on opinions on the value of life.Karen.

Absolutely - I totally agree, it's very very difficult.

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Sorry, I missed this post earlier. I respect your view but it isn't how I feel personally. The law respects your view and that's why we do not have euthenasia. I fully understand why the law is this way and the tremendous issues involved but it isn't how I feel.

 

I personally would never have considered abortion on any grounds but for a physical condition incompatible with life beyond infanthood however... If I had two children already (as I do) one with special needs (as I do) and then my husband died (as he did) then had I found immediately after that I was carrying a child likely to be profoundly low functioning (which no test available at the moment could tell me) or say the child had downs and a serious heart defect (which tests currently available can show) then I would move the goalposts. Circumstances are significant as well as the condition involved - there are no absolutes.

 

janine

 

I do understand the point you're making, but without trying to upset or offend, the choice you are describing here (the unexpected pregnancy with a severely disabled baby) is not actually about whether that particular life is 'worth living', it's about whether the mother feels she can cope...which are actually two completely different issues.

 

Which raises the point that other people have made I think, about the vital need for better support for families.

 

Bid

Edited by bid

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I do understand the point you're making, but without trying to upset or offend, the choice you are describing here (the unexpected pregnancy with a severely disabled baby) is not actually about whether that particular life is 'worth living', it's about whether the mother feels she can cope...which are actually two completely different issues.

 

Bid

 

A person's life is not just about the physical / neurological hand they're dealt, it's their entire life experience and secondarily there's the inevitable impact on the lives of others. A life which could arguably be worth living in a perfect world might be that much grimmer, intolerable even, in the real world. I believe this with all my heart but it is just a belief, if someone believes something different that's fine although I will never concede that all life is sacred just because "it is" even if I conceded everything on a case by case basis (if you get what I'm trying to say.

 

janine

 

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A person's life is not just about the physical / neurological hand they're dealt, it's their entire life experience and secondarily there's the inevitable impact on the lives of others. A life which could arguably be worth living in a perfect world might be that much grimmer, intolerable even, in the real world. I believe this with all my heart but it is just a belief, if someone believes something different that's fine although I will never concede that all life is sacred just because "it is" even if I conceded everything on a case by case basis (if you get what I'm trying to say.

 

janine

 

But I guess that could be said about all children brought into this world...just look at recent cases in the news about perfectly healthy children born to parents who subsequently abused/killed them.

 

Anyway, I really shouldn't be posting as I know I need a break because of difficulties with my mum :( I just felt so strongly about the comment about some lives not being worth living :( In truth, I think the point is really that some lives are not worth living to some people, but that doesn't yet hold true for society as a whole (and hopefully it never will).

 

So forgive me for disappearing! :)

 

Bid

Edited by bid

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A person's life is not just about the physical / neurological hand they're dealt, it's their entire life experience and secondarily there's the inevitable impact on the lives of others. A life which could arguably be worth living in a perfect world might be that much grimmer, intolerable even, in the real world. I believe this with all my heart but it is just a belief, if someone believes something different that's fine although I will never concede that all life is sacred just because "it is" even if I conceded everything on a case by case basis (if you get what I'm trying to say.

 

janine

 

Hi I do respect your opinion however I have a concern.The real world is hard and unfair.We have a situation where in some parts of the world life is grimmer .The fact that things are more difficult means that those who are weak and vulnerable are more at risk and may be seen to have less value.I believe these people need more protection.In some parts of the world children with disabilities are abandoned by families who are unable to care for them....because of the impact that they would have on the family.I would never judge the families that are forced to make these difficult choices.However the starting point must surely be the value of life .Other issues include providing the best possible care and support to enable even the most vulnerable to have the best life experiences they can and to support families in order to lesson the impact of disability on the family.

History has demonstrated that where human beings are allowed to make decisions on the value of life based on opinions of the life experience and the impact on the lives of others then things can go badly wrong.Karen.

 

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Hi I do respect your opinion however I have a concern.The real world is hard and unfair.We have a situation where in some parts of the world life is grimmer .The fact that things are more difficult means that those who are weak and vulnerable are more at risk and may be seen to have less value.I believe these people need more protection.In some parts of the world children with disabilities are abandoned by families who are unable to care for them....because of the impact that they would have on the family.I would never judge the families that are forced to make these difficult choices.However the starting point must surely be the value of life .Other issues include providing the best possible care and support to enable even the most vulnerable to have the best life experiences they can and to support families in order to lesson the impact of disability on the family.

History has demonstrated that where human beings are allowed to make decisions on the value of life based on opinions of the life experience and the impact on the lives of others then things can go badly wrong.Karen.

 

I agree absolutely with every word you've said. It's just more facets of a very very complex situation and most of what I've said is, as I've stated a few times, very personal and I'm more than open to other views held even when I'm not likely to shift in mine. One thing I believe in above all else is a woman's right to choice (even though I may want the time limit brought down, more promotion of adoption as an option, more education and support etc). I don't believe all life is a priori sacred but I would never extend that beyond my very personal sphere (my life and potentially in a very few other circumstances my unborn child's life) however, I do recognise what you're saying about the implications of a lack of respect for life in the context of a more deprived society. This is not an angle I'd really considered before and despite what I've said about where I draw a (shaky) line I do on the whole respect life (I'm a conviction veggie even tho' I'm no animal lover) but this I see as a very valid point.

 

The debate is going on beyond the scary confines of the Mail btw

http://www.timesonline.co.uk/tol/comment/c...icle5536872.ece

 

janine

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The interesting thing is that in our life the most difficulties always have come from the society,"proffessionals" and not from our autistic son.

I find it frightening to read this article and to watch teh TV this morning on BBC1 at 10-o`clkock/furthere discussions on the abortion option of autistic and other disabled people`s like down syndrome life.

I have found that this ideology is dreadful and very similar to fascism during the second world war.

Maybe our kids are costly?Maybe some people feel uncomfatable among them so let`s finish them.........

And most of these people /ASD or down/ they are a lot more honest and coloful than the rest of the population and they make positive contribution to present society as well so we should learn and if we are willing we can learn a lot from them...........

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The article says very little about living with autism, and a lot about the plight of carers generally. Substitute an adult caring for an elderly parent or partner with, for example, alzheimers, and the scenario would be much the same.

 

Anybody at any time in their lives may find themselves, without choosing to be, a carer of someone who is extremely dependent and difficult to manage, with all the stress, isolation and deprivation that goes with it. We might be able to invent ever more sophisticated ways of eliminating imperfections before birth, but as they go through life, even perfect humans will get sick and old and fragile and need someone to look after them.

 

Lack of support wrecks lives. This writer should have turned her fire on the people who are supposed to be helping this family, and aren't. Why has the education system failed them, for example? That is an issue glossed over in the article.

 

K x

Dear Kathryn,

Thanks for this very good annswer to this very complex topic.So should we terminate the sick elderly or cancer patients or everybody who is not perfect according to sys who defibne what perfect is??

Best

Edith

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the choice you are describing here (the unexpected pregnancy with a severely disabled baby) is not actually about whether that particular life is 'worth living', it's about whether the mother feels she can cope...which are actually two completely different issues.

That's a very important point and perhaps the issues have become confused here.

 

A life which could arguably be worth living in a perfect world might be that much grimmer, intolerable even, in the real world.

But surely that's the same as saying we'd rather throw out the square pegs than try to adapt our round peggedness to accommodate differences? If the 'real world' never has to face issues that are strange/different/unknown because it can just throw them away, then it becomes a stagnant world. Change happens because people want and are prepared to make it happen and it is working through issues and finding solutions that binds us as a society.

 

If a life is worth living in (what you term) a 'perfect world' (so one adapted to an individual's needs and tolerant of difference) then the onus has to be on the 'real world' to make such adaptations.

 

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I mentioned this here about genes responsible for criminal behaviour. Should there be a prenatal test for this?

Very good conclusion......and prenatal test against all costly illnesses and on the people who "do not fit in"........./ I wonder what prenatal damage affected the article writer???

Edith

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But surely that's the same as saying we'd rather throw out the square pegs than try to adapt our round peggedness to accommodate differences? If the 'real world' never has to face issues that are strange/different/unknown because it can just throw them away, then it becomes a stagnant world. Change happens because people want and are prepared to make it happen and it is working through issues and finding solutions that binds us as a society.

 

If a life is worth living in (what you term) a 'perfect world' (so one adapted to an individual's needs and tolerant of difference) then the onus has to be on the 'real world' to make such adaptations.

 

On a societal level I agree with you totally but if one woman feels otherwise, even once she's been given the very best of information (and only once she's been given the very best of information) then if she feels that she cannot love and support that child and will not consider giving it up for adoption then I think that termination would be the best option and that she should not be censured for that choice.

 

janine

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One thing I believe in above all else is a woman's right to choice (even though I may want the time limit brought down, more promotion of adoption as an option, more education and support etc). I don't believe all life is a priori sacred but I would never extend that beyond my very personal sphere (my life and potentially in a very few other circumstances my unborn child's life) however, I do recognise what you're saying about the implications of a lack of respect for life in the context of a more deprived society.

 

janine

 

I totally agree. Well said.

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Hehehe, well it got you all talking.. seriously though, Hitlers life was a life not worth living. Each of us have ONE short life and if you have a choice to attempt life as stress free as possible, ( because worry and stress could probably contribute to your own early death) wouldnt you take it?

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Hehehe, well it got you all talking.. seriously though, Hitlers life was a life not worth living.

 

I suspect HE would disagree with you. It's that 'viewers perspective' again.

I really, really hope nobody is going to 'misunderstand' the point I am making here

 

 

L&P

 

BD

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Hitlers life was a life not worth living.

Ah, tricky - his life per se was worth living - what he chose to do was the issue and we should look at the path that led him the way it did. But his life, as a life was worth living. Does that make sense?

 

 

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seriously though, Hitlers life was a life not worth living.

 

But who can foresee what each one of us will contribute, good or bad, each and every human that has existed or will exist has an impact on human/ world destiny, no mater how small. We all know the saying about a butterfly's wing.

 

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There seems to be a worrying trend to negativety towards autism, i will admit life is a challenge and has been a huge learning curve for all of us and yes having a a 9 year old with the mind of a 5/6 year old is hard going, his 9 year old body is stonger so his kicks and tempers are quite something, but never do i go through the day thinking he has wrecked my life, i know the siblings have it hard ,because he is so demanding of attention, but then ,family life is a battle for attention and fights and scraps and arguments. If any thing he has taught me to be more tolerant of other peoples differences, and sympathy with other parents having a lively toddler in the supermarkets. This article is giving a almost go head for this pre natal test to come in and give people the same options as they get with tests for spina bifida and Downs and you know what that means.

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