Fast Results in Autism Genetics
October 25, 2007 by Kristina Chew, PhD
Filed under Health
The first genome scan for autism has been completed following the analysis of genetic data from more than 3000 autistic children and their family members. The October 24th Science Daily reports that “new high resolution technology” developed by the company Affymetrix has made it possible to make the genetic data accessible to researchers very quickly. Funding from the Autism Consortium, which is a “network of leading scientists, physicians,
and families [who] are working together to get fast results in the search for treatments,” has expedited the process. Thomas Insel, Ph.D., Director of the National Institute for Mental Health, is quoted:
“Today’s release of genetic and phenotypic data on autism marks a significant achievement for the autism research community…..Progress in finding the causes and cures for autism spectrum disorders rests in large part on improving the rapid access and sharing of data and resources. That the Consortium is making the data available to the scientific community even before its own researchers have fully analyzed the information, demonstrates their high degree of commitment to and leadership in advancing autism research.”
It is the fast rate at which such a large sample of genetic data has been made available that is being emphasized by the Autism Consortium and by Dr. Insel; some have stated that research on genetics is slow in producing answers to the causes of autism and to treatments for it (in contrast to biomedical research on the environment). The Autism Consortium indeed hopes to “accelerate the search for new treatments,” especially in light of the rising prevalence of autism, as Science Daily states:
The number of individuals diagnosed with autism spectrum disorders has significantly increased in recent years. Although there is some uncertainty about the role that better diagnosis, greater recognition of the disorders, and biological and environmental factors play; there is growing agreement in the research community that genes have a significant role in autism spectrum disorders. The release of the data from this screen is a significant step toward identifying the genes involved in ASD.
Might it be that we can better analyze the genetic data because our understanding of autism is better?: Because we can better identify characteristics and traits of autism, we have a better sense of what to look for.
There are concerns that the more we know about autism genetics, the greater the likelihood that a prenatal test for autism might be developed, and also that expecting parents might choose not to have an autistic child—-and that eugenic abortion might occur. As I learn more and more known about the genetics of autistic children and their families, I gain a greater and greater sense of how Charlie is connected to Jim and me, to us as his parents; to how Charlie has inherited certain traits and characteristics from us. No one in either of our families is exactly like Charlie—has his autism diagnosis—but he is undeniably our son and like us, from what we have passed on to him.
wow.
i guess my concern is, why spend the money on this kind of research. i’d much rather that money was used to provide exceptional education to special needs kids. let’s spend the money and energy on who’s here RIGHT NOW.
i fully support a woman’s right to reproductive choice.
my problem is now the conversation is about ‘bad’ women who are ’selfish’ and bad parents who seek the perfect child. i’m not saying there are no selfish people out there but let’s focus on the real issue: how do we as a culture respond to differences that ask more than the average of us? race to identify it? FIGURE IT OUT so we can stamp them out or “prepare”? were life that neat, that we could all know what was coming!
how about addressing the present need? how do we meet the need that exists right now. that’s where i’d put my money.
“Educate Autistic (and All) Kids Now!”
Kathy, nobody is saying that there aren’t women who’re traumatized by abortion and regret it deeply. I’m sure there are. But when you say “many women are traumatized and regret it”, or something to that effect, you imply — and I assume your intent is to imply — that deep regret and wounding are usual. (If that’s not true, please correct me.) If you’re going to do that, I’d like to see some reasonably valid stats. For all I know you’re right, and the usual aftermath is deep regret, apparitions, and traumas that haunt women throughout their lives. But sayin’ don’t make it so, and it’s not my experience of women who tell me their abortion stories. At this point in the conversation we got nothing but anecdote, which gets us nowhere. So let’s see the research.
It also occurs to me that even though I deeply regret and was scarred by my marriage, and I think it’s an awful lot simpler just to live in sin, I’ve got nothing against the institution. Some people seem to like it and do pretty well by it. (Eh, Kristina?) So I think you’ve got a red herring going on, there, Kathy. You’re against abortion on perfectly valid theological and emotional grounds, but you’re hunting for debate points. It’s not necessary.
If what you’re really concerned about is trauma in some portion of the population, then we can deal with it as we deal with anything else. Unless most people who get legal abortions really are traumatized and overall regretful, we develop screens, and try to screen out poor candidates for abortion. In fact that’s what many clinics already do. But that solution sounds outrageous in the face of what you’re saying, because it isn’t your real problem with abortion.
kyra, your stance makes a lot of sense if you already have an autistic child and/or you promote the existence of autism. But if you want to lower the incidence, or don’t think it’s a great thing, the research makes sense.
I don’t really understand, either, the “I wouldn’t want research that, in Alternate Universe B, would’ve made me substantially different from the person I am” POV. Assuming it existed, and through some time-travel magic you’d come out different — or, for that matter, not at all — how would you know?
Kristina, thanks for that on the “can imagine”. Makes sense to me.
Eh. I should qualify, Kathy — when I say “screening” I mean the sort of thing most docs would find reasonable, not a Reardon list. I remember going through that thing and wondering who wasn’t “at risk”, by his definition. I couldn’t come up with a theoretical not-at-risk pregant woman for his screen. He also thoughtfully avoids Step 2 in the process, which is “weigh risks of abortion against benefits of abortion”, and jumps right to “contraindicated”. It’s cleverly put together, though.
Like I said Amy read the book!
What have you got to lose eh?
I did not say it was always the case, Amy, only that many women are deeply affected by the procedure… and the aftermath.
Women who don’t even believe in God.
After all, this is about the termination of a life non?
Not quite the same as having one’s tonsils out, I would think.
We had our daughter genetically tested. I think it can be helpful. We now know that there are some physical concerns we need to keep an eye on. There are other things to learn and gain from genetic testing. I think parents of older children who are autistic should have more access to the genetic testing.
Regarding not convincing people that raising kids with autism can be joy- think some start out refusing to believe it could be anything but burden
and in those cases “starting points are irreconcilable”
you are doing an excellent job Kristina- do keep chipping away!
Amanda, the problem isn’t “refusing to believe it could be anything but burden”. I’m sure there are plenty of joys. Certainly Kristina describes them.
The problem is much simpler than that. It boils down to: How much of my life and money am I likely to spend taking care of this child? Personally, I don’t want to spend the rest of my life taking care of children, and I don’t want to face old age poor because of the cost of their care. I have other things I want to do, too. So there could be all the joy in the world in caring for autistic kids, but if there are other things you want to do in life — things that require freedom from regular caregiving duties, or money — it strikes me this is not the choice for you. The same applies if you already have children and are committed, say, to sending them to college, being a financial buffer, and ensuring that you won’t turn them into sandwich-generation kids.
The usual response I hear here is a grasping at straws. It goes like this: Well, you never know what will happen. The most normal kid could have an accident. But the response doesn’t work, because these choices are not about certainty and guarantees; they’re about risk. The risk of having to spend that kind of time and money on a child who’s not disabled is low. Most children don’t end up back in their parents’ care permanently. But the risk of being a lifelong caregiver and support to a child with autism looks to be quite high.
That there is joy is not in question.
I hear a certain strain in these “it can be done!” posts. I think it has to do with a refusal to accept that you might like and value and treasure something, but others might reasonably say, “Yes, it sounds very nice. I still don’t want it.”
Then: Some children, however skilled, accomplished, and independent, may end up needing their parents’ assistance in other ways. Once never knows.
Look, amy, I really don’t mind recognizing the issues that come with parenthood. But I think, for me, it comes to this; Do we really have the moral authority to chose and manipulate our own population traits? Do we honestly have the intellectual maturity to do that?
I’ll admit that in any event that eliminating selection will end up with cases in which the family can’t take care of the kid, and that something should be done about that (adoption is the answer for me). But we’ve run this risk forever. Really, we have. Not particular to autism, of course, but it does seem such that. Mind you, I’m not saying we’ve been dependent on the result.
I would say the same thing if it was me or anyone else, frankly. In something like parenthood, all of the results (including the result of adoption) should be considered if you want to have a kid, and in a way that maintains human (genetic specifically) integrity. If you don’t want a kid, go ahead and abort the kid as you desire. My moral issue isn’t in regard to keeping everyone per se, it’s the issue of selection.
And onto that. I’m going to draw attention to a few things you said that I don’t agree with.
1) The carriers remain. No, not really. It wouldn’t be instant, but the carriers would be diluted as the mixing of a non-expressive, given that the genes would not pass at the same rates, but would be controlled as such. Because the genes wouldn’t be allowed to form together, childhood would be statistically selective to the non-carrier, and thus those genes become more prominent to a complete total over time. In an abortion scenario, it would be unreasonable to expect a regular pass seen in natural selection.
2) Homogenization does not work out, except in places where the law mandates it such. Err… I doubt that’s the only way that comes about, really. Assuming you don’t create a secluded populace that would reproduce normally (not likely at all), then social expectations will do the rest with an external factor of control (which was the law in China, but the test will do it, too).
3) There are many homogeneous countries, like Japan and Iceland, that exist today fairly normally. I disagree that either Japan and Iceland are homogeneous to the degree with I am describing. Indeed, calling Iceland homogeneous assumes the typical stereotype of Iceland of being completely cut off from Europe, which really isn’t true. Japan similarly is not as homogeneous as one might think, especially since it assumes Japan’s homogeneous nature is genetically homogeneous (not true either, for the different kinds of races that inhabit the Japanese islands). None of these have active genetic manipulation as described here.
Cliff
The world is messy.
Anyway. Again, I appreciate the moderacy, but much of what you’re saying seems to me confused.
1) “The carriers remain. No, not really. It wouldn’t be instant, but the carriers would be diluted as the mixing of a non-expressive, given that the genes would not pass at the same rates, but would be controlled as such.” If few noticeably autistic people reproduce now, then as far as population genetics is concerned, they don’t exist and never did. The rr doesn’t, as far as I know, often “pass”. To be simplistic about it, you have a world of Rr and RR, whether or not there is an abortion screen.
Of course, this is all a bit silly, because we don’t know how the genetics might actually work, and the story may be considerably more complicated. But in any case I would think you’d still end up with nonexpressing carriers produced mainly by other nonexpressing carriers, so your genome is still happy. Don’t forget that somewhere in Generation 18 a hideous virus may kill 93% of us. Doesn’t pay to stretch it out too far.
2) “Homogenization does not work out, except in places where the law mandates it such. Err… I doubt that’s the only way that comes about, really. Assuming you don’t create a secluded populace that would reproduce normally (not likely at all), then social expectations will do the rest with an external factor of control.”
First, I think you’re missing the point. In China you were looking partly at a social expectation; boys are socially more valuable than girls. However, when you’re talking about abortion based on disability, outside pressures are much less important. The main issue isn’t “what will people think”, it’s the amount of work that will likely be required from the mother. Closely tied to that is the question of whether she thinks she’ll likely have energy, money, and time for other children, and whether the father will put in much work and money.
Second, I didn’t say homogenization doesn’t work out; we have notable examples where it does. Secluded populations may be somewhat less likely now, but they certainly exist. You should see what Orthodox Jews go through to trace genealogy before they permit their children to marry. And boy, do they reproduce. The Icelandic population is homogenous enough to be a haven for genetics researchers. If you want to see fervor to preserve genetic identities, have a look at people trying to protect distinct groups with cultures thousands of years old.
“I disagree that either Japan and Iceland are homogeneous to the degree with I am describing.”
Cliff, we’re talking here about abortion of fetuses that some imaginary test shows to be likely seriously autistic. We are not talking about an elaborate and deeply inefficient mass cloning programme. Human diversity, including the diversity of autism, would remain. What would go, I think, would be much of the expression of severe autism. Not the genes themselves. (You might recall we still carry genes for tails and webbing between our toes; they just don’t normally get expressed.)
About adoption: I wouldn’t do it with a “normal” baby. Why? Because I feel myself to be responsible for the children I bear. Sometimes — sometimes — adoption works out well. Very often it doesn’t. I would find it a much more moral decision to kill a 10-week fetus (child, baby, the name doesn’t matter to me) than to consign a child to decades, or a lifetime, of bad homes. Particularly a child so dependent on others. That would seem to me an unspeakable cruelty.
What still disturbs me in your response, Cliff, is that you’re ready to use women, and use them pretty comprehensively, to maintain the expression of certain traits in the population. Essentially what you’re interested in is blocking one type of abortion on the grounds that we haven’t the moral authority and stature. But you seem quite comfortable with the moral authority and stature to leave this burden and cost of raising those children to women who would say no, given the choice — but yes to other children.
I cannot think of a single parent of my acquaintance, btw, who gave any thought to “human genetic integrity,” or really very much beyond their own immediate families, when having a child. When you become a parent you have a really unfortunate number of kid-and-pregnancy-related conversations, and I can tell you that this human-genome thing came up zero times. I’ve never seen it discussed on parenting boards. There’s an enormous one called babycenter.com. I think if you go over there and start talking about the responsibility of maintaining the genome, no one will have any idea what you’re talking about. Though you may get mistaken for a racist.
Gah, I gotta go to bed. Nature may be almost done with me but I still have to take the kid to gymnastics in the morning.
In terms of ultimate truth, of course I can’t begin to make that statement. But I can say that we simply do not know enough about what would be a form of genetic manipulation not to seriously mess up in the process. With that, onto the points.
1) Actually, we have recorded genetic drift in this regard, with things less subtle than autism. When you have that form of reproductive selection, you do genetically water-out the genes, even if they inherently pass. So this isn’t an impossible statement.
2) If you think that there isn’t real social pressure to have a regular kid, I would disagree heavily. If you have a control like in China, and that form of abortion does that, it does allow for serious homogeneous control. There’s also another assumption we’re both disagreeing on, and I’ll get to it in a second.
3) Actually, here’s the issue. If we’re talking about the genetics we know, namely the SERT and GABA areas, a test for “autism” would detect those traits on those areas and assuming that the kid is aborted thereafter we’re talking some very serious control. Autism is of the normal in this genetic regard, and so as the comparative traits come up the controls would have isolated some very general genes. Simply said, the genetics are so complicated and so spread out from what is known that the control of those genes needed for controlling autism per se would lead to serious genetic homogeneity, a far cry from Iceland and Japan.
Regarding adoption, I do think assuming that every life that is with that kind of difficulty still shouldn’t be invalidated because that life would be difficult. I have had a seriously difficult life at point, suicidal at a few, depressed at many more, and largely with a serious inferiority complex my whole life. Under that example, my life should have been aborted because of said serious difficulty. It’s just too tough to live, huh?
Similarly, I have an adopted sister. Teenage mother, underwent anesthetic before birth. All kinds of odd processing issues because of it. Difficult life. Does she die, too, because her life was, what, difficult?
And I never said that the mother had to raise the kid. Once again, I never said that. I’ll admit this, though, I do accept the mother would go through a pregnancy that might result in the mother giving up the kid in the end. But that’s not new, and it’s something that in my mind is unavoidable given we remain genetic integrity and get our hands out of matters we can’t reasonably understand. And I would say the same if it were me.
And I’m sorry if, apparently, this comes off direct, but I really don’t care if others think about it. I think for myself. And if anyone really knew about maintaining genome in the sense that we’re talking about, allowing reproductive methods to work their course, then it comes to me that the other side comes off as Nazi-esque. After, that was the last and only time we’ve seen the willingness to genetically tamper at the level we’re talking about.
Cliff
Cliff, do you not see that you are also looking to do genetic engineering? Once a choice is available, baby, both sides make it, pro or con. You want to keep the switch off. I want it on. But the knowledge of the switch makes us both engineers.
The difference between our positions, as I see it, is that you want women to serve as vessels and mothers to suit your purpose, which is to maintain certain expressed traits in the population. Now, you wouldn’t be the first to do that. There’s a long line of advocates for women to dedicate their lives to making particular kinds of babies. But they are all deeply misogynist, because they all want to _use_ women to some purpose.
(Do they have women’s studies courses at your university? You should take some. A few, maybe. And try and understand what they’re on about instead of arguing, because there’s bullshit a-plenty to argue with there, but also excellent insight, which you’ll miss if you’re focused on arguing with the bullshit.)
Have you noticed, btw, that you’ve posited autism as necessary to the wellbeing of mankind? Or — “Autism might be necessary to the wellbeing of mankind! We don’t know!” Well, all kinds of things might be necessary. We don’t usually wait for all answers before acting. Usually we work on a “try it and see” basis. As far as species success goes, that tactic seems to have worked out OK.
“1) Actually, we have recorded genetic drift in this regard, with things less subtle than autism. When you have that form of reproductive selection, you do genetically water-out the genes, even if they inherently pass. So this isn’t an impossible statement.”
Well, I would like to know which cases you’re talking about. Again, if most visibly autistic people do not reproduce, then as far as evolution goes, they don’t exist in the first place. They don’t pass on anything. The only people doing the passing-on are carriers to carriers.
In our hypothetical genetic screen, if the screen is crude enough to catch mere carriers or people who will have some non-disabling form of autism — something where they’re likely to do normal things like grow up, live independently, have careers, have children, etc., but they may just be a little weird — then yes, I can see doing some real damage. But I’ve already posited a finer test than that, way up above, and that’s what we’re arguing about. On your side, living but non-reproducing autistic people. On my side, aborted autistic children. Evolution says they’re the same, and that as far as gene expression goes, it doesn’t matter which happens.
Remember please to distinguish between gene expression and genome. Lots of genes persist (for a long, long time) but are not currently expressed.
It really strikes me, Cliff, that you’re confused here. I mean I know you have a concern about other genes travelling with genes for autism, but again, apart from other confusions you’ve got in there, if visibly autistic people don’t on the whole reproduce, the unintended-consequences issue is moot. Nothing was travelling with their autism-related genes anyway. That train don’t leave the station.
amy — what’s your dx again?
“Evolution says they’re the same, and that as far as gene expression goes, it doesn’t matter which happens.” Meh. Sorry. I meant “as far as the gene’s incidence goes”.
Cliff writes:
“Regarding adoption, I do think assuming that every life that is with that kind of difficulty still shouldn’t be invalidated because that life would be difficult. I have had a seriously difficult life at point, suicidal at a few, depressed at many more, and largely with a serious inferiority complex my whole life. Under that example, my life should have been aborted because of said serious difficulty. It’s just too tough to live, huh?”
Cliff, first, if you had a good and loving home, I think you err seriously in comparing your life with that of an adopted child in a bad home, autistic or not. There are many more bad adoptive and foster homes than you may think, and the systems set up to protect those children are themselves horrorshows. Have a look sometime.
I really don’t like to use the “when you’re older” line, but it’s true here. I think you’ll see this very differently if you’re responsible, someday, for a child. The question of whether or not to put yourself through hell is very different from the question of whether or not to put your child through hell. (Which is why parents routinely put themselves through hell for their children, but protect their children from the world’s ordinary horrors as far as they can.)
Right now you’re not a child’s protector, and you’ve never had to face the decision of whether or not to consign a child, quite helpless, to be brought up in homes where the odds are not good at all that she’ll be treated well or even humanely. The odds are worse then the child has a disability. Personally, I would find the decision to do that monstrously irresponsible when abortion was available. I believe that there are things worse than death. And so do others. That’s why you’ll find people expressing relief when a friend or family member who’s been ill with a painful disease, or had a terrible life, finally dies.
If there were some adoptive utopia available to disabled children, I’d have less of a problem with your idea that we avoid developing screening tests. But there is no such adoptive utopia. The choices available to mothers whose children are likely to be disabled are “abort, give over your life, or abandon the child to God knows what kind of home.”
As for your sister, she was already born. There was no question of abortion. If her birthmother had been told early in the pregnancy, “Your child will likely have serious problems,” and she kept on with the pregnancy but planned adoption, then I’d think her very young, romantic, and naive, but that goes along with the age. If she were 35 and did that I’d think it shocking.
I don’t think that choosing not to make decisions implies an engineering because the choice of the engineering itself is eliminated.
I also have the general expectation of maintaining integrity of populace, yes. But I wouldn’t have posited it as limiting a choice as opposed to using. I don’t feel that one must be a mother at all, which is implied. I do feel that any human trying to choose children is a real issue. On your argument, by the by, it can follow that because I might not be able to pay the bills (something I don’t want), I have a right to the choice to steal (a manipulation of my circumstances over general circumstances). It’s a confused argument.
Anyway, onwards.
1) I’m disturbed that you don’t think autistics reproduce, which to be honest isn’t true. In fact, that’s a really overbearing assertion. I have a direct descendant in an AS grandfather, and I might have kids too. So that assumption is overbearing and honestly untrue.
And regarding degree? Weren’t you just the one to argue in terms of a discongruent set of 3-d spaces? How would that even vaguely work if autism exists in a discongruent set of 3-D spaces? The measure is far more extreme by nature than what you are willing to imply. You’re drawing a line where there really shouldn’t be one, and where the distinction is genetically unclear regardless.
And I am distinguishing between expression and genome. But the genes don’t exactly carry as such for the same deal. The genome would mix with those with a lack of degree that the genome would be disrupted to the point of statistical elimination.
I’m sorry for being a little rude here, but it is very poor form in an argument to simply say a person is confused. I could have said that several times, as could anyone for many points, but that does nothing in regards to the points themselves. On that manner, I addressed the reproduction point above.
Cliff
My mother is a family court judge, amy. And I feel that the people she deals with, especially the kids, have something worthwhile regardless. In regards to my life, I’m not going to draw in theories of comparative emotion, but really there is actually a floor to human emotion, and people do hit it. There is a simple biological aspect of humans, a limit to how much emotional pain can occur. Don’t doubt that for whatever reason I might not have gone there.
I do think that everyone has a chance in that system to form their own lives, and I do think that it is also extremely difficult to do so on occasions. But the chance is valuable in and of itself, and just preferring death is now making the decision for another person when the stake is not your life and theirs (where abortion I find is ok) but just theirs. So now you are taking control for another person in ways that you shouldn’t. You’re assuming that a person must be negative in that situation, that a person can’t make their own lives. The chance in and of itself for that kind of existence of anyone is valuable.
Oh, and my sister? There was that decision. The parents kept.
Cliff
What Cliff said.
[Brilliantly and politely, too.]
Cliff, you are misunderstanding me. I never said that the children are not worthwhile, and I never would. I don’t believe it’s true.
Nor did I say that no autistics reproduce. I said “most”, which is what the clinical talk says, and I believe I also said “if that’s true” somewhere in there, because they’ve been wrong before. As far as we know, though, on the whole, seriously autistic people do not have children.
I’m also aware that we’re talking about a condition which is itself poorly defined. And that’s why I posited a fine screen up above. I’m not in favor of a crude screen that doesn’t tell you anything about likelihood of disability, and I doubt most doctors would be happy about that either. Frankly, at this point, this is all theoretical, so you may as well be hanged for a sheep.
If you are talking about taking on control of another person’s life — this is unavoidable when you have a child. You bring the child into being. I don’t know what greater control there is. Parenthood is, among other things, very much about control and the slow release of it.
And I don’t mean to imply your life hasn’t been hard. I can’t make that judgment anyway. (Nor are you in a position to say where the floor is for human emotion.) But there is a considerable difference between being suicidal in a supportive, loving home and growing up in a home where you’re routinely mistreated or abused, from babyhood on. Kristina mentions Ralph Savarese’s book; read the sections on his son’s early life and maybe you’ll see what I mean. I would gladly abort a child before subjecting him to that, regardless of how bright the picture might turn years later. Whether or not you give a child up for adoption, you are the mother. You are responsible for what you let other people do to him or her.
“But I wouldn’t have posited it as limiting a choice as opposed to using. I don’t feel that one must be a mother at all, which is implied. ”
Again, Cliff, you’re missing the point. The point is that women often have the ability to choose what sort of obligation they take on, and that there is a distinct difference between the obligations involved in having your average non-disabled child and the obligations involving a child who’s got a much increased chance of needing lifelong care. (Rather than rehearse, to those who say “but you never know what will happen afterwards,” I’ll say “Possibility v. probability”, and leave you to read farther up the thread, where this has been dealt with extensively.)
You’re saying, “Take what you get or don’t be a mother.” This is not unlike arguments that say that if women don’t want children, they shouldn’t have sex. In other words, forgo a sexual life and being, and leave that to men and mothers.
(For what it’s worth, many women feel that yes, they must be mothers, and that if they don’t have children they’ll be less than whole. I’m not one of them, but the feeling is evident. If you hang around with childless women in their late 20s, you will no doubt hear some of this. You’d be astonished at what women will put themselves through to have children.)
I really don’t think you see the misogyny in your arguments. And it’s not surprising to me — this is not at all to denigrate, but you’re not only interested, but 16. Why should you know what it was like for your mother? (Even if you’re a charming and easy child, she will, if she’s nice, protect you from knowing what it’s been like.)
I spent this morning scrambling for childcare so that I can go to a conference tomorrow morning; my babysitter cancelled. I’m presenting at the conference and it would not be good careerwise if I backed out; and since I provide most of my daughter’s support, that’s not a light thing. I had plenty of other things that needed doing, but instead I ended up on the phone with the lawyer (explaining why I can’t take my daughter with me; there is no childcare at this conference, and I know no one there), begging favors from friends who are themselves overwhelmed, and sending emails to settle arrangements. All of this during my daughter’s violin lesson, in the music store, before and after which I had to pretend everything was fine. This was after all the time it took to line up the original babysitter.
This is a normal professional mother’s life with an easy child, one who’s very sociable and verbal and adapts readily to change, and is, frankly, easy to farm out. Actually I’m luckier than many because I’ve been in this community for so long and have built up good support. I have friends who take can’t sleep because they’re trying to work at home to keep their babies out of daycare, and the nannies — charming as they are — don’t turn up, but the deadlines don’t change, and there’s a NICU bill to pay, despite insurance.
Kristina and Jim do what they do with tremendous good grace, and they have found a good life within what they’ve got. But both of them have given up quite a lot to get there. Jim gave up a tenured post in the humanities, which meant giving up security, income, benefits, and a solid professional roost after over a decade of hard work for it. (I believe the going availability for humanities t-t jobs is 1/700 PhDs now? Is that right?) Kristina was, I imagine, tenure-track in her humanities field, and again, let all that go. They had to live for quite a while in a difficult situation with her in-laws. Their dollar cost alone is vast, and while it’s impolite to focus on that, it’s a significant thing. Dollars mean better care in old age, rest and medicine when you’re sick, and the ability to buffer your children from trouble. But they gave up more. If their marriage were not good, or if their health were not good, they could very quickly find themselves in significant trouble.
Childrearing is hard, nonstop work and expensive, despite its many delights. That’s why it’s not only reasonable but wise for a woman who finds herself pregnant to say, “I could take care of a normal child, but I would have real trouble taking care of a special-needs child, so I would like to pick and choose as far as I can.” (If we’re talking genetics, this already happens in selection of a mate, btw. And if you want to take that further, you’ll note that the females in many species evolve quite elaborate strategies for the weed-out.)
I think you have a highly theoretical idea of motherhood, Cliff, to tell a woman, “You should accept this risk because you want a child, even though we have the ability to minimize it.” I would say: When you are the one likely to pay the price, and likely to support not just yourself but a child who needs that kind of care, all in the name of genetic diversity, you’ll be in a much stronger position to make the argument. Until then, you’re looking to other people to pay the bill, without first asking whether it’s a sustainable thing for them to do. Which is, oddly enough, a theme I seem to return to frequently here.
gack, I have so far avoided being tagged with a diagnosis, though I am sure there are people who’d enjoy doing it.
Again, the point of “severe” falls flat on its face considering autism in terms of a discongruent set of 3-D spaces, and again you’re not drawing a clear distinction to the individual, less than anything vaguely in genetic terms (no need for specifics) that would describe that. So this “fine” screen is still a matter of subjectivity and will still end up with real damage. If I’m a misogynist,you’re making the mistake of strictly creating unhelpful and faulty distinctions between, say, you and me, as well as something below. Mind you, I’m not going to assume that you are really meaning to draw such, in what my mind seems silly, lines, and that I don’t understand something. But I will go out and point out that “most” and “severe” are two terms I would throw into question. I mean, “severe” again is subjective. And in terms of discongruent 3-D spaces, it is more than possible that a highly substantial population of autistics reproduce. Not some small amount needs to be assumed.
As to the biological floor, I’ve had a stimulated effect in a drug that managed to bolster the depression effect, and it reached a stasis effect. So I’m not sure about the ridiculousness of that claim. However, onto the abuse. There is an aspect to that, and it’s not easy to know that may happen. But to then make the claim that on that basis the kid’s life should be aborted seems to be singular in focus. That argument can be twisted in all sorts of ways, actually, in regards to the “strong possibility” of someone’s life having extreme difficulty, and therefor there should not be born. I’m not going to press that point, because I feel it’s digging. But let’s say that point applies to virtually affected by a horrible war, “severe” autistics, genetic disease in the family, fill in blanks. In fact, it breaks down at “severe”, and to reasonably follow the argument to its logical point you would fairly invalidate the birth of any life. On another point, the argument seems to hinge on the certainty of certain abuse. I’d not say this is a certainty (having seen that system at work), and would further say that at a minimum securing a good parent, working to improve the adoption system, etc would be well above just aborting the child on that reasoning (again, no objection to all abortion).
And I think you miss the point as well. Again, there is no implied “taking” necessary here, with the exception of the childbearing (which I find to be something of a gambling process anyway, by nature). Though, once again, this is admittedly dependent on the process of adoption.
And I’m going to point something out, a point I avoided because it is decidedly ad hominem, but given some three entries therein I’ll make it. If I am making a decision for the mother, you are making a decision for the kid, independent in the circumstances we are talking about from your life. Is that so much better? They’re young, it’s better? If I am misogynist (which I guess I have to now assume I am, since you are making the argument largely upon “you don’t know what you’re talking about”, with some other inconclusive statements), you’re not really any better off, for you are controlling far more drastically other lives without a double sided issue of the living considered.
Nice? Not to know? Odd enough of a statement, it seems to me. No, I’m made well aware of how difficult I was by many involved, thank you, though not really all by my mom. You’d think I could live in today’s society and not get that, anyway? Believe me, that gets pressed. And I would have respected their decision to put me up for adoption. Not only that, but if that would lead to abuse and no language, I would accept that, too. But never having had life to any degree would have been worse, for me. I can say that strongly about myself, no issue. This is backed by a clear memory of my early life.
And mate selection does occur, sure. But you’d have to assert many more things about autism than I would ever would have been willing to, see above.
Cliff
Your daughter’s taking violin, amy—Suzuki or traditional method?
I’m not sure how it might sound to a child like DJ Savarese to know that his mother wished to abort him…………
The choices that we made for our careers and lives have opened up new doors. I’m very glad that Charlie gave us that chance.
Cliff, regarding “severe”—-I think if I wanted to, I could represent Charlie in ways that fit in with what people consider “severe.” I try hard not to make it sound as if he can do more than he can. “Severe” in regard to autism is another term that I feel does not really capture things accurately: Having language and going to school in a “mainstream” setting do not necessarily mean that one is going to manage well, go to college, etc etc.. Raising Charlie has shaped me in ways I still find surprising.
That’s true, Kristina. The overriding point, though, is that the matter is really very subjective. I could, by birth and by more general tendency (regardless of extreme training), fit in the severe category as well, in some circumstances. In some definitions, language is the defining barrier, which puts someone like Charlie outside that barrier. Right now, much of that can sound silly, but it’s how the condition works. At some level, there just isn’t a line to be drawn, because not only can we do it genetically, we can’t even do it practically. I’m hard pressed to theoretically, in any real sense, create this “fine” barrier.
Cliff
Kristina — it’s a mix of Suzuki & traditional. Apparently Suzuki’s falling out of favor, leaves you struggling with sight reading after years of A1, A2, A3, because you don’t really know the note names. My daughter loves it (which is good, because otherwise it’d stop immediately — this is expensive! And seriously, 4 years old?) Yeah, music is very special, isn’t it. I always enjoy your posts about Charlie and the piano. Thanks for asking.
Cliff — by “severe” I meant “disabled”, which for me is a somewhat less draconian version of the SSA requirements. Essentially that the child will need substantial help with “the activities of daily living,” will not likely be independent as an adult, hold jobs, maintain own homes, care adequately for self without substantial assistance. It doesn’t really matter where you fall in the posited 3D space if you’re disabled; someone else will likely have to center their lives around taking care of you, for as far ahead as anyone can see.
I understand your point about making decisions for others. I really do. But there are two things missing from your analysis.
One is that like it or not, the mother does the work. A depressed child who decides not to kill himself has only himself to care for, and he isn’t even fully responsible for that. But a mother who decides not to abort a child must take care of herself and the child.
You’d be surprised how the standards get hiked, too, when you take care of yourself and children. I’d never live this way just for myself — I don’t need a house, a car, a religious community, lawn care, food this good, mornings spent at various kid lessons and activities amongst nattering stay-home mothers. (Yes, they natter. They’ve got tremendous lung power, too. It’s not easy to get any work done near them.) But it’s not good for small children to live like artists, and I wouldn’t make her live that way. Instead I have this strange and very expensive double life.
Anyway — the circumstances aren’t equal, is what I’m saying.
The second is that abortion meant to saving the child from suffering is not as singular as you might think, and most of the time it’s not because of some presumption about quality of life for a disabled child. Mothers routinely have abortions because they have no money, and living in poverty is not only crushingly hard but dangerous and bad for children. There have been Christian-charity attempts to get around this by offering prenatal care, diapers, and a crib, but unless the charities can pony up a couple hundred grand for each kid, I’m afraid they’re just scratching the surface. Diapers and a crib do not get you and the child out of poverty.
About protecting you:
No, I really doubt your mother’s told you the whole story. Nor should she. No parent wants to lay that on a child; it’s not the child’s to carry. I’m sure there’s books’ worth I don’t know about what it took to raise me. Ordinarily I wouldn’t have this conversation with a young person; it’s not my place either to point these things out. But if you’re going to talk about who should raise what children, you do need to recognize that under the best of circumstances, it’s a hard and risky job. The world is not particularly interested in the fact that you have kids to take care of, and you’re competing daily with people who don’t have the nonstop responsibility, limits on freedom, and expense. In many jobs, if you want to stay employed, you essentially have to hide the fact that you have children, especially if you’re a woman.
It gets tougher if you’re a single parent, of which there are about 18 million in this country last I checked, or just married to someone uncooperative, disabled, or irresponsible. Then you have to pretend you don’t have children, work as though you don’t have children, and do it without any backup you can count on at home. If the children get sick, if the children need extra care, the odds are very good that you’ll be unemployed, and unable to support your children.
I would be in very serious trouble if my daughter were disabled in any non-stable way, and I’m much luckier than most single mothers. I have a professional degree from a top school, some financial buffer, family who can help out to some extent financially, and inexpensive housing available. But I wouldn’t be reliable to work or go to school, which is the refuge of single mothers (at the price of massive debt). So I don’t know what we’d live on. My clients are very understanding people, but they don’t want to hear, “Sorry, this is going to be real late again, I had to take care of my daughter,” very many times. Social security helps, but it’s not enough to live on when you’ve got significant healthcare expenses, and it can take quite a while to get. I understand they tend to go faster for kids, but we’re now into the third year of waiting for my ex’s case. Assuming he’s approved, it’ll likely take at least another six months before checks start arriving.
You can posit all the social amelioration you want, Cliff — adoption utopias, social programs that give immediate and adequate support to working parents without a long waiting period, availability of state-paid, well-trained in-home care, massive neurodiversity initiatives — but currently these things don’t exist and, despite much effort, don’t show any signs of existing in the foreseeable future. So what you are really asking the woman who finds herself pregnant with the theoretically-screened disabled-autistic child is this:
“I know there’s precious little support for you out there. I know this will turn your life upside down, leave you caring for the child for the rest of your life, leave you swimming hard upstream to make a living, and leave you and the child in bad trouble if your marriage ever goes sour. I know adoption is currently really uncertain for disabled kids, and that sometimes they end up seriously abused. I’m not even against abortion; I’m just against taking a peek at the gene before choosing, on theoretical grounds. So won’t you please put my theory ahead of the real and tangible price you and/or the kid will pay for the rest of your lives, and have the baby?”
And if that fails:
“You don’t have the right to choose for another person,” which takes you all the way to pro-life, without qualifications. At that point you can toss any talk about autism out the window, because it’s not what you’re most interested in. If that’s the case, you can roll up sleeves and start working for laws and institutions that take essentially pay women for their caregiving labor, or distribute the burden, so that a single mother of a disabled child may have a career trajectory and social opportunity equivalent to those of a married father with a stay-home wife and children who aren’t disabled. There’s plenty of work to do. Until it’s done, you’re saying, “You don’t have the right to choose, but you do have the obligation to pay.”
Amy,
Genetically, a whole people qualify for “disable” which include, surprise, me. Genetically, there is no term of “disabled”. You’re still in the land of subjectivity, regarding “substantial”. I see no real distinction in this point.
And I understand caring for the child, to a point. But after birth, or when that disability becomes clear, for me the mother has the full ability and right to hand over the kid and resume whatever as desired. As for childbirth, I’m still going to say that it’s a process that is random in and of itself, and even in a realm of “possibility versus probability” the possibility needs to be recognized in that degree, that something could go wrong and at that point you need to fall back to something else. Unless you make the complete choice (and we’re not implying a control quite like that in any event), there is that element.
On the singularity, I would direct you to reread my previous post and explain that further. Particularly, on the realm of it being contingent on one life and not the other.
amy, I purposefully avoided the point regarding me in specific for different reasons. But I’m going to say, rather simply, that for the large majority of my life I was reminded how much I was a “drain” on my mother’s life, an abomination not worthy of her, and not by my mom herself. So don’t assume that things weren’t said in that regard, and don’t think I didn’t get it, especially if the self-confidence (or extreme serious lack thereof) was something of an indicator (though there are many factors that caused this).
I know there isn’t a utopia. But, again, to decide to abort on the basis of the child’s life in the adoption process is making a decision for another individual based on that individual against what is almost certainly going to be against that individual’s interest. This is a simple test; go to an adoption circuit and ask them how many want to die. I’ll be certain that you wouldn’t get much in terms of affirmation.
So I don’t feel you’ve refuted the adoption option, really. Waiting to hear more, though.
Cliff
Clarification. Genetically, I would fall under “disabled”, not practically, as I somehow didn’t indicate.
Cliff
I wouldn’t listen to anyone telling you about what it’s been like for your mother to raise you. They don’t know her particular story, and they can’t know. She’ll tell you whatever she wants you to know, and keep back whatever she feels is not your concern.
“for me the mother has the full ability and right to hand over the kid and resume whatever as desired.”
For you, maybe, but not for most reasonably responsible women, Cliff. We’re not going to do a thing like that to a baby. (You’d have a real species worry if we did.) Nobody is going to hand over a kid to a potentially abusive situation, come back years later, and say, “Well, he says he’s traumatized and hurting, but he still wants to live, so I guess it’s a good thing I didn’t have an abortion. Whoops, my meter’s running, see you next year.”
I’ll give you a parallel. A newly pregnant woman who likes her job assumes she’ll put the child in daycare and go back to work, because that’s what you do with children when you’re working. Then the child is born and she sees how fragile it is, and how defenseless, and that it could actually die if mistreated or neglected even for a few minutes. So she realizes the child won’t go to the daycare right away — she hopes maybe in a few months. In the meantime she looks at licensed, state-approved daycares, and is aghast at the conditions, how the babies are cared for, etc. And on the story goes, but the point is that you don’t just hand over a baby and stroll away free and clear. Any baby.
Disabled: No, there is no genetic term for “disabled”. But it is possible to get genetic tests that show “likely to be disabled”, depending on what condition you’re talking about, and others that say “will certainly be disabled”. So that’s all I’m talking about. I see no reason why, in this hypothetical 3D autism space, there might not be individual markers, or combinations of markers, that say “Oh yeah, this one’s probably going to be hit hard.” Of course, none of this yet exists, but I don’t see why it shouldn’t eventually.
Yes, there are always things that can go wrong in childbirth. We worry about it, and we do what we can to mitigate risk. I chose older nurse midwives, for instance, rather than young OBs, because the nurse midwife won’t be so quick to call for a C-section. I chose a hospital birth rather than a home birth, in case there were problems. I didn’t think anaesthesia would be a serious problem — and it wasn’t — but there are plenty of women who avoid it altogether rather than run the risk. People research hospitals. But on the whole we’ve made birth remarkably safe here.
There are many contingencies it isn’t worth trying to plan for. The odds and/or the stakes are low.
Something else about that “accidents can happen” line…I don’t think people expect to come through life unscathed. (Well, most don’t.) There’s always hardship, serious illness, etc. But the timing, duration, and severity turn out to be important. A few heavy blows close to each other can knock people offline for a decade or more. Permanently hurt them. A serious and ongoing problem (like chronic pain, or having a mentally-ill family member) can also do real damage for a long time, damage it may take years to recover from. So people do try to manage the kinds of risk they expose themselves to. Part of that work is figuring out what the risks are, and that’s what genetic testing is for.
Something I’ve always found interesting, btw, is how doctors seem primarily concerned with the mother’s wellbeing when it comes to the decision of whether or not to have special-needs children, or take on other heavy family work. I would guess that they see a lot of mothers in rough shape, and are in favor of risk mitigation, too.
Let’s say whoever has been telling me this has had a pretty good idea of what’s going on. The exacts, I suppose not, but pretty close.
And I’d honestly think that if the mother doesn’t reasonably have the tools to take care of the kid, sometimes those measures are needed, really. Even if that kid has had a tough life, and the person would be right to regret the tough life the kid may have had, that doesn’t mean that the life never should of occurred and that nothing can come out of it. And I doubt that anyone can responsibly look their kid in another circumstance in the eye and say “Well, it really would have been better if you weren’t born, despite the objections you have of your life. You’re not important in this, because after all it is only your life, and I wasn’t even dependent on it. But I’m going to make that judgment anyway.”
So if the mother really wanted to be off with the kid, she probably should go ahead and work with the daycare system, though probably while also working to optimize the system. And if she really decides she wants to still be with the kid, fine as well. But in no way does the circumstance invalidate the kid’s life on the basis of that kid’s life, because the only true judge of that can be the kid.
And that line is going to fall into a wash, for me, because no one is going to get the difference truly. “Likely to have difficulties in life”, “likely to have significant autistic traits”, “likely to be very autistic”; the point is that all of them are going to say “abort”. Regardless of where it falls. The distinction of “disabled” and “with various autistic traits” aren’t going to matter. When presented to a person, you’re going to be aborting everyone, or very close. And I think that because of compounding factors outside of the spectrum that may influence learning of various kinds and of processes, by this point of determination you would be able to manipulate the genome way beyond a simple autistic trait.
I meant the application of “possibility and probability” in a larger scope, for virtually anything that could go wrong in one way or another. That’s a risk generally taken regardless when having a kid, and though you can say “probability” to one or another, taken as a whole the effect is extremely significant.
Cliff, you’re really missing the point, here. I understand you’re an interested party, but there is only one thing that concerns me when it comes to adoption, and that’s the likelihood of a childhood of abuse and torment. Not “is the child likely to be unhappy because it’s disabled.” Unhappiness and abuse are markedly different things.
The likelihood of adoptive/foster-family abuse does increases for a child who’s disabled, but it’s high regardless. When you adopt out, unless you’re very fortunate, you don’t know the people you’re giving this child to. Yes, you may have met them, etc. But they’re putting their best foot forward, for a short time, under limited circumstances, and you really don’t know what they’re like at home, and what their tolerances are. I’ve seen some very ugly things in adoption and the foster system. And once you’re pregnant, you don’t have time to change the system before the baby is born. Even if, theoretically, you were capable of reforming the system. The baby, the child, will get the system that is.
Assuming adoption is out — and I do — then the degree of disability matters to the mother because it means a tremendous amount of work for her, and potentially real hardship, likely for the rest of her life. The concern is not for the child’s quality of life. It is for the mother’s. (I am talking about conditions like autism and Down’s, here. If you’re talking about very painful conditions or diseases like Tay Sachs, then yes, the child’s quality of life is a real concern.) _Every_ child is likely to have difficulties in life. That’s not the concern. The concern is that the child’s difficulties will be so severe that they consume the rest of mother’s life. And yes, probability is important here in making the decision. We are well aware that we gamble in having children. But we also know that most children, come what may, will grow up, start becoming independent as fast as they can (most parents know the angry “ME DO IT!” of the 2-year-old), will move out and go off to work or college, set up their own households, and largely manage their own problems. They may need help from time to time. But it’s a pretty safe bet that you won’t spend your life getting your kid through the day, and trying to make sure people are treating him or her OK.
If that weren’t the case, I don’t think you’d see a whole lot of babies. People don’t generally volunteer knowingly for that life. In industrialized countries the birthrate is already below replacement; it’s lowest in Italy, where women say they don’t want the work and expense of taking care of children or a man. Those who have kids tend to have one child. It’s just a lot of work, and women have other things they want to do. And can do, now. The Italian government tries to entice them with lmoney, and it’s not working.
“So if the mother really wanted to be off with the kid, she probably should go ahead and work with the daycare system, though probably while also working to optimize the system.”
I invite you to go to a chat board full of working mothers and say this. There’s something about responsibility to protect the baby you’ve borne that you’re not getting, Cliff, and I think that’s really the crux of this mini-debate we’re having. I mean I understand this is all highly abstract to you, and I do wonder if your autism figures in here, but mothers don’t leave their infants in situations they don’t trust unless the family will starve or go homeless otherwise, or unless there’s something gone deeply wrong with the mother. That’s why so many mothers abandon jobs, careers, other good situations, things that are good for them personally, often quite bitterly. It’s also why exhausted mothers stay up all night with the baby, turning over the infant who’s learned to roll over, but can’t roll back, and is now having trouble breathing with face mashed against the mattress. The mother often refuses the father’s offer to take over, because she doesn’t believe he’ll stay awake, or hear the baby struggling while he’s asleep. The first responsibility is to protect and care for the baby.
Significant politics does go on around childcare, and I’ve been involved in it. I can tell you that it’s very unlikely that a good, trustworthy creche system will be put up in the US in the foreseeable future. It’s hard enough to get universal preschool for 3-4 year olds, and there are good studies showing that the babies are best off with the parents for the first year, even with good daycare available. There are also politically significant groups that want mothers to stay home with the children, period, and fight against the creation of 0-5 government-aided childcare programs.
Sweden is the gold standard for childcare and mother-support, and the best they’ve been able to manage so far is job protection for the mother, plus a stipend for the first year, with one month of that stipend lost if the father doesn’t take time off work and stay home with the baby. There’s also continued support for the mother in the form of a free, extensive, high-quality childcare system, part-time hours at work and a child stipend to age 18, and college grants for the children (meaning the parents don’t have to work themselves to death to send the child to college). The unintended consequence of this is that employers expect women won’t be “serious” employees, and try to shunt them to support roles instead of meatier professional tracks. You see this in the Netherlands, too.
It’s not like no one tries. People have been working quite hard on this for decades.
oh, I see I missed something.
The problem with attempting to make the definitions right now, I think, is that we don’t know much about any of this. We don’t know the genetics, not even in a crude way. We don’t have a good, full, qualitative description of autism and associated conditions. We don’t understand what the links might be between traits and disability. So to that extent i don’t think we know enough to talk about what a genetic test will or won’t do. That’s why I posit a fine screen that can catch probable disability — this is all imaginary anyway. But there are hordes of researchers out there — there are some advantages to having 6.6B (or is it 6.7 now?) people on the planet. I don’t see that it should be impossible to make a good screen for autistic disability; the question is when. That’ll still leave doctors, sociologists and activists fighting about what “disabled” means, but the scientists will just work with the available evidence: “People diagnosed as autistic who carry [constellation of genes] are in general X% less likely to be able to ________.” You would want to check to make sure there was no other likely explanation and that that constellation of genes isn’t common & benign in non-autistic people.
Again, I think the defining difference is in the inclusion or exclusion of adoption. The acceptance therein does make a significant difference in the argument. Again, I do think that the abuse is not necessarily so and even assuming it that the argument for invalidating based on the life of the kid is a bad one, but you’ve seen that at length.
The differing point because of it would be that I do assume it, and will honestly continue to for circumstances. I don’t think it’s realistic to rule it out, and I do think the consequences of not assuming it when the institution is there is extreme.
I’ve been leaving it abstract for what should be fairly obvious reasons, that of being offensive. But the mother in this case seems to be over asserting herself over the kid in that circumstance. If the mother doesn’t think she can or wants to reasonably take care of the kid, denying the kid the chance to make an existence on that basis of that kid is, despite the mother’s good wishes, still wrong.
Further, I would say that the mother would be over asserting herself in the circumstance, to the point of sheer arrogance. Because as much this is abstract for me (again, another assumption you are placing, which I’ll accept again for whatever reason), when you’re talking about a kid to be, and whether to nullify, we’re already talking abstraction. So I don’t think you can rule it out.
And, again, “disability” is so subjective, that it establishing it genetically would be difficult, at best. Also, the compounding factors of unrelated make that terms on constellation of genes inconclusive. Of course, you can slip this in statistical terms, but because of the structure of the genes, you’d have to establish a statistical certainty (no insignificant number of people) on every combination for every combination of autism-related genes. That just won’t happen.
Cliff
Cliff, you realize you’re making a general pro-life argument, not something to do specifically with autism. I’m just pointing this out because you’re at pains to say that you’re OK with abortion in general. But I don’t think you are. It doesn’t matter what the reason is — abortion is an assertion of the mother’s will over the child’s will to live. While I think they are going to be, qualitatively, very different (what does “will” mean for a 10-week fetus?), I have no problem saying that they’re both will.
About definition of “disabled” — yes, I mentioned that the political end of it was (and is) a big fight. It’s spongy even in less passionate arenas. I’m currently shopping for disability insurance, and I’ll pay more for a policy from a company with a more generous definition of “disabled”. But function is somewhat clearer. “Can this person live on his own?” “Can this person support himself financially?” “Can this person….” etc. And that’s really what prospective parents want to know about. You can call it whatever you want, but if the kid’s unlikely to live on his own, the parents will want to know.
You say the researchers will have to look at all permutations; that isn’t necessarily true. Much research begins because a researcher notices a correlation in some small area. You don’t have to find all groups of genes that correlate with whatever definition of “disabled” you use to find some such groups of genes. And then that’s what the test will test for, until more are found. I wouldn’t be so sanguine about the impossibility of the data sorting and analysis, btw. Data analysis can go very fast now, and speed up very fast. Once the correlation is made at the lab level…well, if you’re against these tests and you’re autistic, I’d recommend you stay away from any clinical studies. Once the data is collected it can be used. All that’s necessary is the question. Though of course you may not have control over that. We have in the past required certain populations to give DNA and other samples for statistical, public-health, and research purposes. We still do. I am trying to remember now whether I had a mandatory HIV test while I was pregnant.
I’ll give you two reasons why I would not trust, or vote for, a policy that says, “You can’t have an abortion, but you can adopt out.” Even if the adoption system provided exemplary homes for the children and some wealth of wonderful adoptive parents who would line right up if your original couple flaked.
The first is that it’s a use of the woman’s body. This would be the state asserting more control over her body than she has herself. It says, “You will grow and incubate this baby.” Pregnancy is not without danger or injury — something like 20% of US women are being placed, probably unnecessarily, on bed rest for long periods during their pregnancies now — and frankly my experience of it is that there’s no mistaking the parasitic relationship. I wouldn’t mind going through childbirth again, but I can’t see willingly going through pregnancy again. Even if it’s delightful, though, it’s the state forcing the woman’s own body to be a vessel for the term of the pregnancy. And this has very bad social effects for women. I’ll leave you to your women’s studies instructors for that, though.
Second, the child is a fact, but laws are whims. In the span of seven or eight months laws and policies can change, sometimes radically. Suppose the adoption system has had politically ugly problems for some time, and when you’re in your seventh month, all disability adoptions are stopped. For whatever reason, but I could invent a handful of usual policy reasons off the top of my head. Well? Then what? Then you have a disabled child and you’re obliged to do exactly what you’d said no to. The punishment on hand if you refuse, even if you can bring yourself to do it, is no walk in the Dennis Kozlowski woods.
When you’re the mother, you are always — always — the person of last resort. This is why motherhood @$#!!s women careerwise. Even wonderfully successful women are dependent on the nanny (will she show today? Our odds here so far are about 60-40) and the goodwill of the underpaid, undereducated daycare staff.
Yes, absolutely, I am happy to place the mother ahead of the child she carries. Things go bad very quickly for women when they have no choice but to go on with pregnancies they don’t want. And I mean women as a whole. The view of women becomes what it used to be universally: They are here to have and care for children. We have in the West a class of what are essentially honorary men, now: women who have been free to choose not to have children, have men’s traditional freedoms and income, and who can’t be caricatured as prudish spinsters. How do I know? I used to be one of them. I miss the status, which I didn’t realize I had until it went away. They’ve changed markedly the view of what women are and can do; one beneficiary was your mother. Another is me, and a third will be my daughter. That’s not possible without abortion rights. Without them, women are always at a disadvantage to men when it comes to any work but motherhood. They can always be knocked out of the game more easily.
Something I’ve left out of this conversation so far is that while views of _women_ have changed, views of _mothers_ haven’t changed all that much. Which means there are substantial penalties for doing what you suggest, and handing the kid over to some cruel life as an adopted, disabled kid. A grown woman who wasn’t in dire straits and could bring herself to do that would have serious trouble at work and socially. It’s hard enough for women who voluntarily give up custody in divorce. They’re seen as monsters, frighteningly cold. Mothers are supposed to protect their children.
=) I’m beginning to feel like I should be charging tuition for an intro to women’s studies seminar, so I will stop. But the bottom line is this: As much as you’d like for this to be about the kid, the kid’s life ain’t the only one in the picture.
No, there’s a contingency you missed in the versus pro-life. The argument is that the contingency in this circumstance is not on the double standard of the mother and child, but on the child because the mother is able to release responsibility. It’s not the same. The assertion is not the issue when there is the double standard, but when the assertion is solely on the kid’s life, which when assumed for reasons regarding the kid (as per an adoption) is solely for the kid.
And here’s the thing on point one. If it is for concern of the mother’s safety, then there is no objection for aborting the kid. Again, main point.
Secondly, phrase circumstances when that would explicitly happen, so I can understand the specifics of what you are getting at, and if they are actually reasonable.
You’re marring that distinction made above. The only pertinent objection made is not to the general assertion, it is the assertion over the child for the child. It’s not the same argument you make it out to be.
Cliff
Examples of family law changing quickly:
A legislature, over a span of a few months, introduces and votes a bill making shared custody the presumption in divorce involving children. Divorces involving custody disputes, depending on states’ time-to-trial limits, typically run 1-3 years. Women in the midst of divorce got caught by this change. A woman may have initiated a divorce after having been assured by lawyers that she would almost certainly get custody of the children — true under the old law. As the divorce is being litigated the law changes, radically weakening her chances, and leaving custody, child support, and her ability to pay the mortgage in danger. Alas, once the divorce is on, it takes two to turn it off.
Mortgage lending laws: Families in expensive markets bought houses with creative (read: stupid) mortgages, and were assured by bankers that when the expensive part of the mortgage hit, they could refinance easily and inexpensively. Last summer the mortgage-lending house of cards began to collapse, and the rules changed abruptly. These families stand a good chance of foreclosure and having to leave their neighborhoods, towns, or even states. Foreclosure will go on their credit records and will hurt their future ability to buy houses, rent apartments, buy cars, and get jobs.
There is no reason why similar changes should not go on in adoption structures. People make them up, people change them, and when the time is right, the rules change quickly. Now it’s true that the odds are low of the rules changing while you’re pregnant. The stakes, though, are about as high as they get.
_Why_ would the rules change? Jeez, I don’t know, it’s not important — these are people you’re talking about. Could be anything. National scandals involving abuse of adopted disabled children. The activity of pro-life groups who offer to help women find adoptive parents for disabled children, set up “adoptions” which don’t take, and the kids are being warehoused in agency workers’ homes in completely inadequate conditions. Crimes involving large payments to adoptive parents of disabled children who then fail to care for the children adequately. You could make up six more scenarios in the next two minutes, I’m sure, but they’re all the sort of thing that might prompt Congress, or state legislatures, to halt such private adoptions until the industry can be investigated and cleaned up.
Re abortion morality: OK, so you’re concerned about the power differential. Again, it doesn’t matter whether it’s to do with autism or not. A non-autistic fetus can’t abort the mother, either. I still don’t see where you’re not simply pro-choice with exceptions for risks to the mother’s ability to go on breathing.
The “safety” talk is nice, but avoids dealing with the social results of abortion that’s not legal _at will_, the woman’s justification immaterial. You seem to be willing to sacrifice women’s standing in the world, and ability to run their own lives, in order to preserve a genetic incidence. You’re willing to use them, in other words. If that’s so, that’s where the misogyny shows.
A few things
On the states that do presume joint custody, which I think is like Michigan and a few others, there is always a clause regarding unwilling or unable.
On the mortgage lending, that’s actually a different issue, given that it’s more about the person’s sudden economic inability, post decision. And when something radically alters circumstances like that, there’s an issue. There you may be either swamped, given you had influence over the kids, unless you want to do a possibly more influential (i.e later) adoption. That’s not specific, and a type of the general issue of losing very quickly while supporting something.
The only time I’ve functionally heard of a widespread shutdown of the adoption programs at large are, if I’m thinking straight, during the Catholic church scandals, and even that wasn’t the full government. Usually, when it is a contingency that many people rely upon like that, it’s just not that likely that people are going to shut down the entire system. For all the rough spots it has, going away like that isn’t actually that realistic.
Power differential isn’t that. It’s the contingency of the life involved. So if the mother could and was going to have a pregnancy, it shouldn’t be aborted on the sole basis of the to-be-child, but is fair if the concern if it impinges the mother’s ability to live. That contingency does not exist in a pro-life argument, but that area isn’t violated but special needs (but, again, assuming adoption).
Again, I think you are missing exactly what I am saying, because that’s not really a conclusion that I can draw from that. I suppose I am barring a certain, and a more specific choice of action than you seem to think I’m suggesting, choice, but I have little issue with that. Society, however, has no issue with that as a general policy.
Cliff
Just some interesting discussion on the process and bioethics of genetic screening.
NPR Morning Edition, October 28, 2002
Full DNA Rundown Can Predict Future Health
“…While some critics are suspicious of the new procedures and others worry about a future of genetic discrimination, David found that he might fend of a number of diseases despite his DNA’s predisposition toward a range of illnesses.”
http://www.npr.org/templates/story/story.php?storyId=1152457
Cliff, the specifics of custody and mortgage lending changes don’t matter. The point is that dramatic change happened very quickly and left people’s assumptions about the future in the dust. The consequences were quite serious, and people found themselves trapped in some seriously bad situations. Adoption’s history doesn’t matter either. (And I might point out that the custody law was a dramatic break with the last several decades’ practice.) The point is that this is a legally-bounded institution; laws can and do change quite quickly. If you go ahead with a pregnancy on the assumption that you’ll still be allowed to adopt out when the baby’s born, you take a risk. The risk may be small, but the stakes are very high. The question you have to ask yourself then is “Do you want any risk at all of having to raise this child?” If the answer is no, then it’s time to schedule an abortion.
The “only to save the life of the mother” argument is a standard softened pro-life argument. You may argue with the logic, which is a compromise, but politically, that’s how it falls out. And it still leaves women at the mercy of egg & sperm, still leaves women demoted again societally.
Interesting story. Thank you, Regan.
Cliff