yeah, autism doesn't really reduce my quality of life at all. like, honestly, i think i'm pretty happy. sure, there are things i have difficulty with and stuff i can't do and experiences i've never had and stuff i wish i could do better, but none of that makes my life terrible, really. one of the best things about my autism, for me, is how, as a result of it manifests in me, i feel able to shamelessly do the stuff i like and not care about what other people think of it - maybe not all of the time but a lot. like, my interests are weird and often kinda obscure, but honestly, i don't care - beyond wishing they had more content and more people i could talk to about them, of course. i can dig deep into the stuff i like and not care about people thinking i'm a Weirdo, 'cause the stuff i like is just so good. i don't know whether i'm explaining it clearly or not, but yeah... sperging and being unashamed of it!
.| \/ I'm no longer talking about autism here - I don't want to confuse anybody. The thing that trips me up with this - not with relation to autism, but with respect to some other congenital/genetic disorders or diseases, etc. - is that... well, okay. Say you're a parent and you want to have a child. The child doesn't exist yet, is not born yet, etc, and so everything about them is not set in stone. The same goes for when a child is an early stage embryo, right? That's not a person, that's a potential person. So, you want the child, and obviously, as the parent, you want them to live with a good quality of life. So, let's say you go into the hospital, have some tests and some scans, and the doctor comes up to you and they say that the embryo or early-stage foetus has X disorder. I'm not talking about autism because clearly this does not apply to autism or indeed many other neurological disorders, so let's say it's something physical. Say that there's some genetic disorder that will leave the child, if it was born, with a lifelong issue with their lungs, so that they will struggle to breathe. You could insert pretty much any disorder here that develops in the womb or due to genetic factors and for which there is no cure. The thing is, in this case, and unlike autism, the disorder in question definitely does reduce quality of life, either through pain, or - well, possibly reduced ability to live life as they might want to? I mean a lot of that might be due to lack of society accomodating for a given disorder. But hey - pain, at least, that's certainly a thing. Either way, what I'm saying is, the disorder (whatever it may be) is a real inherent detriment to quality of life, no matter what accomodations can be made. Now, so, the doctor says, we could proceed with this pregnancy, and the child - your child - will be in pain or have a reduced quality of life. Or, they say, we could abort the embryo and you could try again with another child who does not have the disorder in question, and will not have to feel its purely negative effects. At this stage, both of these children, the one with the disorder and the one without, are both potential children. I don't think the fact that one child is "already" an embryo makes it any more "already there" than the second child. When it comes to things like genetic testing with IVF, both children would be in the exact same pre-developmental stage, before implantation, anyway. So, what you've essentially been given, as a parent, are two options. Both options will result in you having a child, and you are no further down the road to having either child. The only difference is that, down one option, your child will live a life filled with pain and the potentially devastating effects of the disorder. Down the other, the child is able to live free of that. Is it a bad thing to afford parents that choice? Is it a bad thing for them to choose to have a child who will be free of that pain? Either way, a child has been born. Neither child is more valid than the other. Again, I'm not saying that this applies to autism, because we've essentially just spent the thread establishing that autism does not necessarily lower quality of life. However, you seem to be talking with regards to all disorders or illnesses in general, and so I'd be interested in your thoughts on this. You mention depression or bipolar disorder - but these are conditions which manifest after birth. Of course, once a child is there, they are no longer only a "potential" child. They are a person, a living human being, and as such should be afforded the treatment and accommodation that they deserve. But I'm not sure that the same applies to embyos, because they are not yet people, unless you want to start saying that they are, which feels off to me because that's what all the pro life people say. (Again, I'm not talking about autism or any specific disorder any more. I'm just talking in general about other types of disorders that can be identified in the womb).
Sorry, I made my last post before I saw this. What I'd say is, you're not saying "you can't play", because option two is to have another child without the disorder. Either way, one of those children doesn't get born. I just feel like it makes sense by a certain logic to have the child who doesn't have reduced quality of life. If anything, it's more like just saying, "your future child can either have X disorder, or not have X disorder! Which do you pick?" Again, I'm no longer talking about autism.
Wait, this doesn't make sense to me. Kid 1 is already in-progress, so it makes sense to say they might not be born. Kid 2 isn't even a zygote, they're a possibility, so it doesn't make sense to say they won't get born because... they don't exist at all! There is nothing there as of yet to be born or not. There are not eggs and sperm earmarked for their existence (unless the parents are using in vitro fertilization). No choice has been made. There's only the possibility of trying to conceive again or not, which the parents can do - or choose not to do - regardless of whether or not they abort Kid 1. Like... a possible choice is not a potential child (it can result in one, but it is not in and of itself a potential child), so it doesn't make sense to talk about it 'not getting' a chance to be born if it never existed in the first place.
I guess? I guess what I'm saying is, in this scenario, the parents have decided to have a child. So a child will happen, it's just a question of whether the child is going to have X disorder or not.
I'm definitely a lot less certain about this than I was when I thought about these things before. I'm wondering how much the judgement is actually based on concerns about the child actually having a lower quality of life - for any disorder, really - than it is about the parent's own perception of the child having a lower quality of life. How much it is about the parents themselves vs the actual experience that the child would be in for? (Again, I'm not really talking about autism here). Not even to get into things like parents not feeling prepared to care for a child with a given disability or disorder. On one hand, yeah, if you're not prepared to care for you kid don't have the child, but on the other hand... it's a dangerous road that could lead to some things that look very much like eugenics. Maybe if you're not prepared to care for a certain "type" of child, don't have one at all? That's something I've heard before, and I mean of course any child can develop an issue later along the line.
I guess the difference in how we're viewing this is that I'm seeing it as one child, who is a constant. And the two "potential" children, through either method, as the potential that could be grown into that one child. And as a choice between the two "versions" of what that child could be. Edit: I guess I'm not seeing an undeveloped embryo, even if it would naturally become a child, to have any more inherent potential to become a child than any zygote that may or may not exist at the time or in the future. Because aborting is a choice, yes, but then so is not aborting. You need to decide to have that child as much as you need to decide to try again later down the line, postpone, use a different zygote for ivf implantation... you name it.
That still doesn't really make sense to me. The child is not in a state of 'going to happen' until there's a viable zygote there. The parents may try very hard, but until that viable zygote is a thing, it doesn't make sense to refer to it as a potential child. ... This is what you get asking a thread full of autistics: pedantry about niggling details of your posited scenario. :D Anyway I had more to say, but you ninja'd me. :) I agree with you that there's some thinking to be done about how much is based on actual concerns of quality of life, and how much that's a smokescreen for not wanting to face the reality of dealing with a child with X problem.
This is a tricky issue all round. These sort of matters raise a lot of emotions, and I can kind of empathize with all sides? Thankfully I don't ever intend to have children.
I think prenatal testing is a very tricky subject. On the one hand I can see where it can lead to eugenics. On the other hand there's a woman's right to choose. Difficult stuff.
I think that's the kind of question where there's not really a "right" answer or if there is, it's case by case. I think prenatal testing could be useful IF society and doctors don't push people to abort. Imagine how much better early childhoods could be if a doctor said "Your child will likely be/have X, here's some of what you can expect and some good resources for learning more".
Mmm. I mean, no matter what you think on the matter, it's not the doctor's place to weigh in on that decision, really. Only to provide accurate information. Edit: Unless it's something like the mother or foetus' life is threatened by an abnormality
My parents knew I was going to be physically deformed before I was born. They lived in country that treats deformed people as a "punishment" from God for unspecified sins. The parents and the child would be ostracized, ridiculed, etc. They didn't know I was going to be Turner Syndrome and autistic, only that I would be physically deformed in a way that could not be hidden. They moved from that country to the US and let me be born. Raising me was not easy (I'm really hard to deal with). They love me and have written back to their homeland gov to stop the hatred of deformed people. They still say they do not regret letting me be born (of course I don't regret their decision, I like being alive - it's significantly better than the alternative). It was not (and never is) a "trade this potentially difficult child for a more healthy one next go-round". That isn't how baby-making works. There may never be another go-round. If there is a next one it might have even more difficulties. Most egg-meets-sperm encounters result in something that gets flushed down the potty in a day or so. No one gets an input on whether a resulting baby will have any particular disorder (unless genetic engineering gets way better than it is now). Some can be detected, but none can be accounted for before the thing in the womb has advanced to a noticeable not-an-egg stage. Abort because the resulting child will be the wrong gender? Some choose that. As long as it is a personal choice and not mandated by some social constraint, doesn't bother me. If it is because the society only values babies of a specific gender - that bothers me. If condition X is devalued and pressure is brought to bear on the potential parents to get rid of it (Down Syndrome is the current bugaboo of the medical profession) there is a problem. If my parents had not had the option to leave the country they lived in at the time I was conceived, I think my not-born self would have understood being not-born. The difficulties for both parents and baby would have been huge with what they knew, and multiplied with the things they didn't know. Note: Eugenics is not an individual set of parents making a decision to have or not have a baby because of X, it is the conscious and deliberate pressure of their society to discourage/encourage selection of all babies within the society for X. Anyway, I think I went into babbling long ago.
When the issue is one of the child being ostracized and ridiculed, then that's not the same as things like pain, I think. In that case society just needs to get better. Quality of life is not something that is inherently impacted. I do think there might be something to what you're saying about it not just being a trade-in, though. Yeah. Yeah, you're right. I mean those parents could very well just have another child anyway? So what you're doing when you decide not to abort is not just picking one of two options. Because both options is also an option. There are other cultural factors, like you talk about. And I mean, it can be a very difficult decision for the parents. I don't really know what I think about this now, to be honest. I mean we've been speaking about the child experiencing inherent lower quality of life - fact is you can't judge that without speaking to the child. Which I guess makes it more about the parents, and what they decide that they themselves want to handle, which can be influenced by culture? I don't know. Is it a bad thing if parents decide they can't handle a kid with a certain disorder? I guess it might depend on circumstances - what if the parents can't afford expensive medical treatment? It might be a case of, "if you can't handle a kid with problems, don't have a kid at all"? Can you really blame a parent who does not want the emotional pain of a child who might be seriously, even terminally ill, in the cases of some disorders? Argh. So many factors, I don't know. So I'm really not sure any more. I guess I'd look at it on a case-by-case basis, but lean towards "diversity is important and people should potentially be given a chance, unless there are really exceptional circumstances". Man. I want to have kids even less now. Anyway, my head is aching from trying to wrap my thoughts around all of this, so I'll bow out (unless I've said something incredibly wrong or ignorant somewhere, in which case correct me).
Don't forget you're talking to a 34 year old deformed girl who will never be an adult by any standards other than age, who cannot speak or understand speech, pees in her pants, and hits her head on the nearest hard surface when stressed - and the only part that could have been predicted was my weirdly long straight bones. And I love being alive (most of the time), and my current family loves having me around even though they have to watch out for me all the time.
The physical pain of having the wrong size arms and legs and fingers and toes does not even come close to the emotional pain of going into a store and being refused service because I cannot speak. I spent years with pain in my stomach area from cysts that could have be easily fixed if doctors weren't misogynistic assholes, and the knowledge that they could have fixed it but refused to simply because "girls are baby making machines and don't have a right to choose" hurts still. 16 years after they finally removed the NON-FUNCTIONAL baby making parts that hurt me from the time I was 12. Society is the BIGGER pain, not the lesser one. I can live with my meltdowns and temper tantrums from random events a lot easier than I can live with people being intentionally hurtful.
Yes, I know. I'm just saying that it's society's fault for being fuck awful. You could have the same issues and yet avoid that pain if society were not the way that it is. It's due to outside conditions rather than an inherent thing caused specifically by disorder(s) themselves, which is what I was talking about.
