The first step towards foetal diagnosis?

[KezT]

Saw this on the BBC website today:

 

http://news.bbc.co.uk/1/hi/health/8368733.stm

 

It could be an in uterine dx of nuerological conditions including some autism.......

 

Would you have it if offered? Would you act on it if a dx given?

[Karen A]

Hi.

Unless there have been developments that I have missed I think dx for most forms of ASD must be a long way off.

There is not yet a way to detect ASD in the majority of cases using MRI scans for people already born.

I would think that if that was possible that would come first.

If it had been available I would not have had it.But then nobody in either side of the family had any history of ASD so I would probably never have been offered the test anyway.

I know that Ben is very glad to be here and we love him as he is.We could never imagine not having him.

However Ben has AS and our situation is very different to parents of children with severe ASD and the children themselves.

[justine1]

Saw this on the BBC website today:

 

http://news.bbc.co.uk/1/hi/health/8368733.stm

 

It could be an in uterine dx of nuerological conditions including some autism.......

 

Would you have it if offered? Would you act on it if a dx given?

This is interesting and its good that science has come so far.I do not think its likely they would give an unborn or even newborn dx of something like autism because you wont know how the child will develop one way or another,even severly autistic child may be a high achiever in some way,one never knows. On the other hand like cerebal palsy,sevrly autistic kids can have problems walking,communicating,need to be fed, be in nappies etc.this will be a problem for a parent who knows they wont cope in that situation.I myself know I wouldnt cope.What happens if the parents are told there is a 70% chance their child will be autistic?Will they abort the foetus,or take that 30% chance its to hard to consider.My sister in law had an amnio when pregnant with my nephew,the scan revealed he was 65% likely to have downs amnio came back clear but she bled afterwards and could have lost her son and its likely to be their only child due to age and other factors.So this is hard to answer really.I think if you plan on having a baby you should be prepared for anything,an ill child,healthy child etc that way you wont be "caught out"It is those who dont plan to have children that will find themselves in a more difficult situation.I originally planned to have six kids,but with my marriage breaking down and all my energy spent on the four boys I have esp.Sam (AS)I couldnt bring another child into the world as much as I would love to.I am sure in the future people will be able to test their partners genes for autism before having kids,then what?What if thats your soulmate and you deeply in love do you throw it away cause of a test?

[trekster]

hello

 

i would appreciate the forewarning of having an autistic kid, but i wouldn't kill my baby unless my life was in danger.

In other words if i was emotionally stable at the time i wouldn't take the "autism out on my unborn baby" (which is what

i would be doing, "this kid isnt good enough for me" after all xe could be autistic or aspie but at least i could change the

environment for xem before birth.

 

Alexis

[KezT]

It is only the very first step, and any kind of dx without multi-disciplinary teams is still years if not decades away. the post was supposed to be thought provoking rather than phrophetic;)

 

They currently offer a test for Downs, which can be very mild or very severe - there is no way of telling from the feotal test, yet it is a standard test, which you have to opt out of if you don't want it. in fact, the standard test actually only tells you the liklihood of the child having Downs, so isn't actually a dx (you can go on to have an amniocentesis if you want a definate dx), so the fact that autism is such a wide spectrum would not automatically be a bar to its use.

 

I have always had all the tests offered. Never had to make a decision what to do about the results tho. Considering how easy it appears to be for me to get pregnant (I was using contraception for both the last two!!!) in theory I would abort if i knew they would have no quality of life. In practise, carrying out your theories is not so easy.....

 

Our kids will have some major moral dilemma's to navigate imho. I wonder if they will take it all on board as easily as we accept, say, contraception?

[Loop]

The first steps towards backdoor eugenics of ASD's?

Edited December 13, 2009 by Loop

[KezT]

The first steps towards backdoor eugenics of ASD's?

 

That depends how its used - the same argument could be made about any scientific/medical advance. Eugenics is culturally & socially acceptable in certain circumstances. we just don't like to use the word since WW2, but the concept has never gone away.

[Loop]

That depends how its used - the same argument could be made about any scientific/medical advance. Eugenics is culturally & socially acceptable in certain circumstances. we just don't like to use the word since WW2, but the concept has never gone away.

 

I think any rational mind can discern the context here. All you've offered is a logical fallacy of a false comparison, and a pretty woolly one at that.

[KezT]

I think any rational mind can discern the context here. All you've offered is a logical fallacy of a false comparison, and a pretty woolly one at that.

 

pardon? you've lost me I'm afraid.

 

the original question was, of you could find out before birth whether your baby would be ASD or not, would you? and if so, what would knowing mean?

 

If I could have a Dx for the baby I'm carrying atm, I would. it would certainly make the next few years slightly easier and less stressful if I didn't have to watch & wait and fight for specialists to be involved.

 

My family are carriers of Tay Sachs. If my baby had been dx'd with that I would have aborted. tay sachs babies never make it past five years old, and spend their whole short lives in agony. I watched my aunt and uncle go through that, and no-one can possibly think they or the child gained anything from such pain. IMO Pre-natal screening makes sense, as does the eugenics commonly practised to avoid having such babies if the disease is known in the family.

 

I am not sure what woolly fallacy i have presented, or what context you thought I was presenting. I thought I explained the question I was asking perfectly adequately.

[Loop]

pardon? you've lost me I'm afraid.

 

If your counter argument can't stand on its own logical validity but has to cite some sort of precedent then that needs to be clear and directly applicable.

 

But you'll have to forgive me, I'd just come from taking to task some bigots on a debate forum, so was still in 'faulty logic destruction mode'

 

I guess I posted here after being alarmed by some of the stronger views on another thread, the aspie cure one, rather than in response to your good self. My points there are that when we take an institutionalised approach by parcelling up ASD's as something that can screened for before birth and eliminated by abortion you're sending out an horrific message to every living person with an ASD.

 

Our society will not tolerate more of your kind.

 

Maybe the use of the phrase 'backdoor eugenics' is a bit alarmist, but I'll make use of it to highlight an inherent problem within democratic systems - that the majority, by concensus decision, can sometimes badly treat a minority that has not been able to properly represent itself because its identity and rights have not been properly recognised.

Edited December 13, 2009 by Loop

[KezT]

My "counter argument" was that eugenics is not necessarily a bad thing - it depends on how it is used.

 

I am not in favour of eliminating ASDs through compulsory abortion, which is the "Nazi" version of eugenics. I am in favour of screening and wherever possible eliminating some of the awful conditions and disorders that exist in the world, which is, without doubt, eugenics by the duictionary definition of the term.

 

the choice of screening your foetus for anything is not eugenics in any way - it is just science. I knew what gender all my kids were/will be long before they came out. It was never a problem which one they turned out to be, but nice to know. in some cultures people use the same knowledge to practise selective births. IMO, that is not a good use to put the knowledge to, but the ability to screen for gender is not inherently wrong. In fact, in some circumstances, it is inherantly right IMO (certain gender specific genetic anormalities for example)

 

Therefore the ability to screen for ASDs would not be inherently wrong. it would depend on what use that knowledge was put to.

 

Not sure where the wooliness was, but perhaps that has made it less so?

[Loop]

Not sure where the wooliness was, but perhaps that has made it less so?

 

 

Hmm, sadly, no. We can pin the wooliness down here:

 

I am in favour of screening and wherever possible eliminating some of the awful conditions and disorders that exist in the world...Therefore the ability to screen for ASDs would not be inherently wrong. it would depend on what use that knowledge was put to.

 

And it's a dangerous wooliness. You're asking for a knowledge to be given before any conditions are set on the responsible use of it. Let me explain...

 

What's one of the choices that people have who are given this knowledge? If you give the knowledge of an ASD before birth in a society where abortion is legal, and where people routinely abort foetuses with certain conditions that are detected before birth, aren't you simply sneaking the choice in by the back door? What sort of precedent does that set? Where does it stop? I don't want to put up what seems like a slippery slope argument, but we all know how precedents work, it's in the meaning of the word. If you allow one person to abort a child because of an ASD that was detected then you've answered a moral question to whoever else might ask it. It becomes acceptable and institutionalised. Now, when we consider what I said earlier about certain minorities not being properly recognised or represented in a democracy, with such a precedent set we could one day see the elimination of ASD's. Can we give people the choice to eliminate a certain portion of the population because they have a certain neurological identity that isn't neurotypical?

 

Now we can use that word 'eugenics' in the context I was referring to.

Edited December 13, 2009 by Loop

[KezT]

Hmm, sadly, no. We can pin the wooliness down here:

 

 

 

And it's a dangerous wooliness. You're asking for a knowledge to be given before any conditions are set on the responsible use of it. Let me explain...

 

What's one of the choices that people have who are given this knowledge? If you give the knowledge of an ASD before birth in a society where abortion is legal, and where people routinely abort foetuses with certain conditions that are detected before birth, aren't you simply sneaking the choice in by the back door? What sort of precedent does that set? Where does it stop? I don't want to put up what seems like a slippery slope argument, but we all know how precedents work, it's in the meaning of the word. If you allow one person to abort a child because of an ASD that was detected then you've answered a moral question to whoever else might ask it. It becomes acceptable and institutionalised. Now, when we consider what I said earlier about certain minorities not being properly recognised or represented in a democracy, with such a precedent set we could one day see the elimination of ASD's. Can we give people the choice to eliminate a certain portion of the population because they have a certain neurological identity that isn't neurotypical?

 

Now we can use that word 'eugenics' in the context I was referring to.

 

 

but the same applies to all pre-natal investigations. As said above, the most obvious is gender selection. In some cases the knowledge is used for eugenics purposes, in some cases it is used for knowledge. The procedure is not eugenics - by the backdoor or the front.

 

The UK law now specifies that abortion for gender selection reasons is illegal (except in medically evidenced circumstances) - it doesn't mean it never happens, (but then again, abortion for convenience happens every day too), but nor should the fact that it does sometimes mean that I shouldn't have the choice to find out if I want to. and I do.. ditto for ASD - I would like to know if that were possible.

[trekster]

but the same applies to all pre-natal investigations. As said above, the most obvious is gender selection. In some cases the knowledge is used for eugenics purposes, in some cases it is used for knowledge. The procedure is not eugenics - by the backdoor or the front.

 

The UK law now specifies that abortion for gender selection reasons is illegal (except in medically evidenced circumstances) - it doesn't mean it never happens, (but then again, abortion for convenience happens every day too), but nor should the fact that it does sometimes mean that I shouldn't have the choice to find out if I want to. and I do.. ditto for ASD - I would like to know if that were possible.

 

i also object to abortion being used as a form of contraceptive. If you are pregnant and mentally or physically distressed then yes i can totally understand why pregnancy would be torture to the expectant parent.

 

i don't understand the obsession of wanting to know if you are having a girl or a boy, my sister took 3 hours to manage to come over and tell us she was having a boy. It delayed us from attending an important meeting. All this pink for a girl and blue for a boy stuff is just plain silly.

 

There was a film called "my sisters keeper" which i still haven't seen. It's about someone who has a baby for the sole purpose of saving the life of their sick child. i dont know how morally right that is considering the kid will continue to think "you only had me because my sibling was sick".

[KezT]

i also object to abortion being used as a form of contraceptive. If you are pregnant and mentally or physically distressed then yes i can totally understand why pregnancy would be torture to the expectant parent.

 

I agree - I am totally in favour of the woman's right to chose - but it is a major decision, and not one to be taken lightly. Contraception is a far better idea

 

i don't understand the obsession of wanting to know if you are having a girl or a boy, my sister took 3 hours to manage to come over and tell us she was having a boy. It delayed us from attending an important meeting. All this pink for a girl and blue for a boy stuff is just plain silly.

 

it's nice to know. Makes chosing names easier LOL. And if you particularly want one or the other, it's best to be disappointed and get over it before baby is born than once it turns up. I just like knowing things and being able to plan - I'm a bit of a control freak like that

 

There was a film called "my sisters keeper" which i still haven't seen. It's about someone who has a baby for the sole purpose of saving the life of their sick child. i dont know how morally right that is considering the kid will continue to think "you only had me because my sibling was sick".

 

I didn't see it, but did hear about it - there have been a number of true stories of that happening. I can't understand it at all - once the baby has "saved" the siblings life has it completed it's function? In which case surely it becomes unecessary! Such a weird concept - we only had a baby because.......

[Loop]

but the same applies to all pre-natal investigations.

 

Yes, it does. There are those who decide to abort after such an investigation. Can that fact be used as a sweeping justification for other 'disfunctions'? Where does that end? If people are willing to abort over the sex of the baby, what about any other number of conditions that science might allow us to test for? We could end up with testing for the perfectly healthy baby, but who decides what's 'healthy'? The search for the healthy baby would essentially become the search for the healthy society by current NT definitions. That's eugenics, and I consider myself perfectly healthy, mentally and physically, thank you, and simply different.

 

Those are questions you need to answer first. You state that the knowledge that science gives us is important, but I say it's potentially far too arbitrary and too weak a justification when abortion is present as a choice.

 

In a judgemental society hung up on perfection, and especially physical perfection, and where conditions such as ASD's are still demonised due to lack of awareness, you have to consider the consequences if that knowledge is given out without caveat to those armed with the choice of abortion. It's morally questionable. The example you give about abortion due to gender choice only serves to strongly reinforce that, don't you think?

 

When I consider how embracing and recognising neurodiversity could enrich our society with extra cultural contribution, and make conditions far better for those with ASD's, the thought of giving people the choice to eliminate that minority with surgical precision and medical efficiency, rather than learn to accomodate it, makes me shudder.

Edited December 13, 2009 by Loop

[trekster]

Im with Loop here

 

The government will support anything that prevents them taking responsibility for autistic needs. They have put their heads in the sand for too long and im hoping the autism act will give us some more action and help. Im fortunate that i have most of my support needs recognised but the quality of mental health support available here is appalling.

 

It all depends on ones attitudes towards disability, those that have positive and supportive lives will be less likely against this intervention

than those who think autism is a curse and are unsupported. i would consider the test only for the purposes of being prepared for an autistic

so i could treat them as an autistic gf/df diet from the start for example but not to get rid of something society considers as defective.

 

Alexis

[KezT]

Im with Loop here

 

The government will support anything that prevents them taking responsibility for autistic needs.

 

 

That's a very depressing way of looking at things, but even so, foetal diagnoses is irrelevant to treatment once born. As said, all pregnant women are offered foetal tests for Downs. the gov't does not refuse to support those who are born with it though (any more than any other condition at least). Nor does a positive dx automatically lead to abortion - nor will doctors recommend abortion following a positive dx. Some mothers do decide to following a dx of downs, and some don't. Some mothers do abort for all sorts of reasons, some multiple times. It still doesn't make the dx a danegrous or evil thing.