About using reproductive technology to eliminate autism

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kyethra
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07 Mar 2007, 12:07 pm

I've read some discussions about things like PGD and Autism Spectrum disorders specifically online. I was surprised to find that much of what I read in terms of reaction to the idea of using something like PGD to have a baby that didn't have Autism was negative. Of course currently there isn't even technology available for that as no one knows exactly what genes and so forth cause autism or leave one predisposed to autism. One thing I did notice about those reactions though was that responders seemed to assume the an Aspie would have an Aspie baby-- not a baby that had a much more severe form of autism. Or at least it certainly seemed like responders assumed that the children would be able to care for themselves. Is that part of the negative response? I think there is a great deal of difference between milder forms of AS and more severe forms of Autism having lived with both of them (myself and my brother). And as far as genetic diversity and genius... I don't know any parent who wants to create the next Steven Hawking or Bill Gates. Most parents just want their babies to be healthy and they hope for normal and happy I think... In a couple of years I'll probably be wanting to have kids and with the high incidence of autism in my family, this is an issue that comes close to home. Would you choose to have a child without the use of reproductive technology if you could use reproductive technology to ensure that your child wouldn't have a disorder (like autism) that would make their life much more difficult? Why or why not?



beentheredonethat
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07 Mar 2007, 2:49 pm

A few years ago...well, more than a few years ago.....the term was Eugenics. It is immoral. First, many autistic people (my son included) are brilliant. Second we don't know enough about the brain to know what else we're "breeding out" when we use such technology, and third, once you start selecting for no autism, you (well not your personally), will start selecting for many other things, and pretty soon they will start making laws about who can reproduce and who can not.....and we're already one foot into a completely controlled society. Fortunately (given that I'm in my 60s, I think this crap is far enough away that I won't live to see it), however, you in your 20s be extremely careful what you wish for, because you might just get it. If you can select for autism, for example, you can select for other traits, and maybe you could also select for brilliant people, those who would live well, and that selection would, eventually, become political, and those of us without a lot of money would be the drones, and those with money, the beneficiaries of it all (wait, isn't it like that already?).
Sex is fun, and it should also be used for the purpose for which it is intended, reproduction. The less interference, the better.
But wouldn it......my answer is no, it wouldn't. People with money will always find some way to use it to enslave people.



pbcoll
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07 Mar 2007, 3:46 pm

beentheredonethat, eugenics is already a routine practice to prevent genetic conditions like Huntington's disease. In developed countries it is only applied to this sort of conditions; in other words, with proper regulation and supervision it need not mean parents selecting things like eye color.
Personally, i would not have children of my own unless there were a way of weeding out AS genes (from personal experience, it is an awful, awful condition). I would not pass AS on to anyone, much less risk low functioning autism. For me, the only morally acceptable options would be to do without biological children, or use reproductive technology if and when available.


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07 Mar 2007, 3:58 pm

I don't think I would ever abort a child because it was autistic, even if they could discern between severe and mild autism (which they can't do clearly yet). That being said I am afraid that I could have a really low-functioning child one day, just given my own state and the fact that I've got two fairly affected children already. But I don't think that will prevent me from conceiving again (exhaustion might, though).

Like someone else said... we really don't know what we're weeding out. I would prefer not to mess with it.

And I feel that we're entering a world where autistic people will be able to support themselves. Society is becoming more cerebral and technical with each passing moment.



kyethra
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07 Mar 2007, 7:04 pm

So is it the nature of the disorder then that leads to the slippery slope being slippery or the ability to weed disorders out that makes it slippery? Is it ok with disorders like fragile x and muscular dystrofy? Fragile X can certainly affect inteligence and personality, but not ok with other things like autism? Or is it the technology and fear of gattica type stuff? And wouldn't/shouldn't regulations be put into effect should it look like this might be happening? I have one rare disorder-- narcolepsy that seems to have some genetic role- most likely some sort of predisposition. Its pretty rare to pass it on to offspring. But while it might affect my intelligence at times (I'm not as smart when I am sleepy) and so forth I would be happy to have it weeded out. I'm also a carrier for a rare single gene genetic disorder that affects the lungs and liver. Being sick affects personality a lot. And sure it can give people charachter. But there are better ways to get charachter than being sick. Its another disorder I wouldn't mind seeing wiped out. Its interesting from either perspective. Of course I think money always affects things. Would Temple Grandin still be Temple Grandin if she was born to a family that was poor?



ZanneMarie
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07 Mar 2007, 7:56 pm

We had very little money and I was just fine. Certainly money didn't change anything.

The slippery slope does not refer to any specific disorder because it refers to what the Germans did. They passed legislation making it legal to euthanize certain people (and yes, Autistics would have made the list). It started with people in mental hospitals, then branched out to physical disabilities, homosexuality and eventually made its way into different "races." Basically they passed it by arguing that you should be able to euthanize anyone who was completely unaware and without hope. Then, it went down the slippery slope until it included anyone they didn't want around. So, that is what the slippery slope is.

As far as your pie in the sky theory about them regulating this, you can forget it. There are already deaf parents wanting deaf kids and dwarfs wanting dwarfs. They keep approaching genetics firms to screen for that in order to up their chances. Some of the firms say no way, others say it's not that cut and dried. No one is looking at legislation to stop them.

If you are so worried about it, use the current technology to prevent pregnancy and there won't be any chance you'll pass it on. There are homeless kids all over the planet looking for a parent. Many of them are very healthy and normal, they just live in other countries. That is going to be an option for you long before weeding out Autism. They are saying it will be years before they will even know what genes are connected to it for certain. It will take even longer to figure out how they work in regard to Autism.

This is just like that idiot, Alison Singer. She had a brother who was Autistic. She is clearly unhappy that she had a child who was Autistic. Now she does all this fundraising for a cure and whines about how this child has ruined her life. Well, you know what? She could have had her tubes tied and it wouldn't have been a possibility at all. She chose to do it. That's what her Harvard education did for her. I'd like to see the stupidity gene wiped out myself, but it doesn't look like that will be funded any time soon.



r_mc
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08 Mar 2007, 4:42 am

The recent research published regarding "autism genes" found genes that appeared to predispose people to being somewhere on the spectrum. It doesn't appear to be possible to predict where on the spectrum though, as there is more to autism than genes. Environmental factors play a huge role, and many of these factors, such as environmental chemicals, are so all pervasive in the environment you really can't avoid them. It would be useful to know which children were likely to be affected so early interventions could be used to improve their prognosis, but given the stigma surrounding autism and the suffering it causes families, it's more likely to go the way of Downs Syndrome- prenatal testing and abortion of affected foetuses. I don't think the whole "acceptance not cure" movement's really going to get anywhere with the general public.



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09 Mar 2007, 2:26 pm

Some areas in India have a lower birth rate of girls than boys because of sex selection. It is supposed to be illegal but there are ways of getting around doing the tests. So now there is becoming a serious problem as these young men grow up and start looking for wives.

There are certain cultures in India that value male babies more than females. Female babies are so unvalued that they are aborted. A female child will require a dowry and that will put a demand on the family.

Western society does not value people with autism or Down's syndrome or other "disorders". A child who is perceived as not being perfect (medically) will put a strain on the resources of the family.

The value system is wrong in both cases.

If I was pregnant, I would not take any prenatal test that there was no treatment for. I would not have an abortion anyway, so why the bother. How would having a few more months "to prepare" for the birth of a "defective" child be an advantage? It is just a huge lie trying to cover up prejudice.



r_mc
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12 Mar 2007, 9:50 am

M02 wrote:
How would having a few more months "to prepare" for the birth of a "defective" child be an advantage?


It would allow the parents and their health care providers to prepare an intervention strategy so the child could be treated at the earliest possible stage. By using appropriate therapies, learning strategies and possibly in the future, drugs, most (if not all) of the childs autistic traits could hopefully be neutralised before they became problematic to the child or their family.



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12 Mar 2007, 10:12 am

What else you are forgetting is that tests can be *wrong*. Prenatal testing determined that I would be born with spinabifida. (And also, that I would be a boy)

I was born a girl...without spinabifida.


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r_mc
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12 Mar 2007, 10:49 am

Immortal wrote:
What else you are forgetting is that tests can be *wrong*. Prenatal testing determined that I would be born with spinabifida. (And also, that I would be a boy)

I was born a girl...without spinabifida.


They can be wrong, and having genes that predispose you to autism doesn't mean you'll definately develop it (as far as we currently know), but simply having a treatment plan in place would give the parents to be a lot of peace of mind, and if the child began to develop autism it could be spotted and treated far earlier than it is now, which would give better results.



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12 Mar 2007, 6:48 pm

The things to remember are, 1. AS and kanner autism are two completely different things, and 2. AS isn't an epidemic, ignorance is. We need to fight for acceptance, but AS shouldn't be treated as a burden. AS will have a difficult life, but not because we're Aspergian, it's because society is racist. This is something to stand against and fight for change.
AS might possibly be evolution in progress (yes I know aspies don't get laid, but I'm sure cro magnons didn't get much action from neanderthals either, and there is no doubt in my mind that aspies would make a more stable society than NTs would, we'd have far less problems such as hunger, poverty, disease, and war, not to mention breakthrough technology... And we are moving into a computer age, afterall), pre natal testing would only hault it. While I am not against the idea for a cure, keeping kanners in mind, I think that the cure should be optional. But I see the difference between AS and kanner autism being similar to the difference between NT and mental retardation.
I prefer not to see Asperger as a syndrome though because calling it a syndrome implies that there is something horribly wrong and deformed with us.



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12 Mar 2007, 6:50 pm

Sorry if anyone objects to me posting here, I am male, but I come in peace. Of coarse then too I've seen women post in men's forum, so I'm hoping that you don't mind me posting this here.



M02
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12 Mar 2007, 6:51 pm

r_mc wrote:
M02 wrote:
How would having a few more months "to prepare" for the birth of a "defective" child be an advantage?


It would allow the parents and their health care providers to prepare an intervention strategy so the child could be treated at the earliest possible stage. By using appropriate therapies, learning strategies and possibly in the future, drugs, most (if not all) of the childs autistic traits could hopefully be neutralised before they became problematic to the child or their family.


Since when is treatment for autism available from birth? Why can't a genetic test for autism be given after birth then instead of before. The main reason for a prenatal test is so that people can decide if they are going to have an abortion or not. The abortion is the treatment.

I don't need my autistic traits to "hopefully" be neutralized because they are not problematic to me. How insulting!



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13 Mar 2007, 5:16 am

M02 wrote:
r_mc wrote:
M02 wrote:
How would having a few more months "to prepare" for the birth of a "defective" child be an advantage?


It would allow the parents and their health care providers to prepare an intervention strategy so the child could be treated at the earliest possible stage. By using appropriate therapies, learning strategies and possibly in the future, drugs, most (if not all) of the childs autistic traits could hopefully be neutralised before they became problematic to the child or their family.


Since when is treatment for autism available from birth? Why can't a genetic test for autism be given after birth then instead of before. The main reason for a prenatal test is so that people can decide if they are going to have an abortion or not. The abortion is the treatment.

I don't need my autistic traits to "hopefully" be neutralized because they are not problematic to me. How insulting!


Currently there is no treatment avaliable from birth as it is impossible to detect autism, or a predisposition to autism, at birth. You are quite correct that the main reason for prenatal testing is so the parents can choose whether to continue the pregnancy. Waiting till after the birth denys them this choice. I did not mean to insult you by suggesting your traits need to be erased- I was talking about babies, not adults. Whilst it is possible for some people on the spectrum to live full and happy lives, it isn't possible for all given the difficulties autism causes and the prejudices inherant in society. Behavioural therapies and some drugs are already being used with success on young children, and the earlier they are diagnosed the better these work. I had severe behavioural problems as a child and still find it very difficult to understand people and "fit in" in society. I am waiting to be assessed to see if these problems are due to AS or not, but if they are then I wish there had been prenatal testing when my mother was expecting me. I could either have been spared this life or given treatment that would have at least given me the chance of a happier, normal life.



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13 Mar 2007, 8:22 am

r_mc wrote:
Behavioural therapies and some drugs are already being used with success on young children, and the earlier they are diagnosed the better these work. I had severe behavioural problems as a child and still find it very difficult to understand people and "fit in" in society. I am waiting to be assessed to see if these problems are due to AS or not, but if they are then I wish there had been prenatal testing when my mother was expecting me. I could either have been spared this life or given treatment that would have at least given me the chance of a happier, normal life.


Personally, I haven't seen any evidence that the kids now have improved lives. As you pointed out, you still have difficulty understanding and fitting in. I find this pervasive in the younger people who post here and it makes me think that you actually have it worse than we did when we just accepted that we weren't the same and found a way to get on with it in spite of that. Here's why I say that (and it's just my observations so don't think I'm picking at you or anyone else): for the younger generation, society is holding out this myth that you can be same as a NT if you follow their magic therapies and take their magic drugs, so you strive and strive for that. In the end it fails and you blame yourself because you think that AS people are doing it everywhere so why can't you? It makes you completely dissatisfied with your life.

I've had many, many communication and team classes, personality tests, presentation skills classes and guess what? I still can't read a face or non-verbal behavior. I can't recognize it. If you showed me a picture and said this person is happy and this one sad, I would only see the slightest difference if the features were so exaggerated that they were distorted. Even then, if a passive aggressive person smiled at me, then stuck me in the back I would never know they didn't mean that smile. I don't have that capability and all these so-called Psych experts do not have the capability to get in there and reroute my messaging system to give it to me. It's just gone like parapalegic legs that will never work because the messages no longer make them move.

I had to learn that getting frustrated and angry about my brain just upset the NTs around me. They have no context to understand why I feel that way and it is upsetting to them. So, now I just tell them flat out. I have no idea what you are talking about and you need to say it straight out. It shocks them at first to be presented with my brain. Of course it does. Most brains they will encounter do not work this way. But, if I'm completely honest and up front and not defensive or judgemental of them, they eventually get it and work with me. When I run into a jerk who won't, the ones who understand interpret. I think they're just relieved that I'm aware of how different I am so they don't feel the need to pretend. Long before AS came along, I explained it to them the best way I could. I found out long ago that remaining calm and throwing in some wry humor about the whole mess went a lot further than me trying to pretend I was just like them. That is what made me the elephant in the room. Now, I'm different, but we mostly all find a way to get along. Sometimes that takes awhile.

I guess I'm just saying that we won't know how much those therapies and drugs worked or how much better those kids are for having had them for years to come. Only time is going to tell us for certain if that really gave them better lives. Right now it's just the word of the people who created them and they have no validity because they have a stake in the outcome. Researchers certainly won't know anything unless they start doing more with adults and looking at the whole thing objectively instead of using research as a way to justify pills and therapies that earn them money. Right now I am skeptical because of what I see. Right now you have hope, but you are frustrated by the current state. Someday maybe we will both know for certain.

As for those parents? They believe there may be 20 genes involved in Autism and they have no idea at all why sometimes it produces low-functioning Autism and sometimes it produces high-functioning Autism. They aren't even certain those genes cause it or if there are others involved. They only know there are things they still don't know and I'm sure there are more things they haven't even thought of yet. Most people can see traits in their families long before the kids come along. In those cases, if they don't want an Autistic child, there already is a cure...it's called sterility/and or birth control. They should employ one of them and quit their whining. Just like my brain, this is the way the world is right now and they need to deal with it. If it changes someday, we can all look at it again.