Autism Vox

90 opinions for Fast Results in Autism Genetics

• Autism Genome | Special Needs Mama
  Oct 25, 2007 at 1:20 pm

  […] Read the full post here.  Cross posted on Speak Softly. […]

• anon
  Oct 25, 2007 at 3:41 pm

  Kristina, I understand the concerns of many people who are concerned that genetic testing for autism would lead to abortions of autistic babies.

  I asked for prenatal testing during my pregnancy because I’m just an overanxious person. Mostly I was concerned about Down’s Syndrome.

  In reality, I can’t imagine ever having an abortion, though I respect anyone’s right to do so, what a great thing genetic testing for autism would be.

  Talk about early intervention!!!!

  All of us would like to believe that we give the best care to our children from birth, early intervention, as you must know, is pretty intense and based on a very young child’s tolerance and comfort level, that could be applied and make huge (potentially) communication gains with them.

  I wish I’d known that my child was autistic or at risk for autism from the time he was born, I would have done a lot of things differently, or at least earlier.

  For the record, even though I do have some inheritable conditions in my family, my pediatrician refused to give me an amnio test. He was Catholic, with a large family and I got a lecture from him about quality of life, etc. and that it wasn’t necessary. Military doctor.

  Chances are my son’s condition would not have shown up on any test and his situation was such that he did regress later, but if there were a test to show that a child is at risk, I would welcome that as a blessing.

  As for the abortion issue - I’m not sure that anyone who would abort a baby with autism, should parent one anyway. They’re the parents who would complain about what a burden the child is.

  Having said that, I believe that there are some conditions that can be diagnosed before birth that one would have to seriously consider the quality of life of the child.

  I’m full of opinions.

• Amanda M
  Oct 25, 2007 at 3:57 pm

  Anon said:
  “As for the abortion issue - I’m not sure that anyone who would abort a baby with autism, should parent one anyway. They’re the parents who would complain about what a burden the child is.”
  in fairness to these hypothetical parents,
  if all they’ve heard is “autism is a train wreck, worse than death/cancer/ financially crippling, marriage/career/family ruining rhetoric
  they may indeed choose abortion because they are “considering the quality of life” of the child.
  with the current devastation rhetoric they may feel they are choosing best.
  lets face it- they are more likely to read about autism on autism speaks than autism vox.

• Kristina Chew, PhD
  Oct 25, 2007 at 4:14 pm

  I’ll have to keep chipping away…….

• amy
  Oct 25, 2007 at 4:24 pm

  This is possible. But again, I think abortion is a reasonable choice when the mother suspects that she either cannot or will not want to raise an autistic child. Quality of life for the child may be part of the consideration; but I think quality of life for the parent should also be a consideration. There is no need to pass judgment on women who would choose abortion, or to use a rhetoric of “the virtuous v. the selfish complainers”.

  When I found I was pregnant — shortly after deciding that having a child with my then- husband would be a bad idea, just then — my ex had enough problems that I knew I might well end up raising a child alone. I figured I could do that, give her a good home and a good start, and retain enough of my life to be reasonably happy, and indeed that’s how it’s going. But I also guessed that raising a special-needs child on my own would be too much for me, and that I would not have good family backup; my family is small, scattered, and aging. Nor would I have had that kind of money. Had my amnio come up with negatives, I’d have had an abortion. For my own sake.

  If someone came to me and said, “Try! You don’t know what it’s really like till you try,” and wanted me to stake the rest of my life on it, at no cost to him, just to satisfy his sense of right and wrong, or his sense of possibilities — well, I’d say that’d merit a laugh and a swift kick in the nuts.

  I respect greatly the family life that Kristina has made. I respect the way she finds richness and joy in it. But there are real differences between her life as a mother and mine. My daughter is four, and can play happily by herself for a half-hour at a time, or run off with other kids while I work or talk with friends, for instance. I don’t want to spend another four or five years having to be right there with a child every minute; that’s part of why I haven’t had more children. If it turns out that for some reason it’s necessary, of course I’ll do it. But I wouldn’t knowingly volunteer to do it.

  Yes, I think the genetic testing is a very good thing, and I’d call it a feminist issue.

• Kristina Chew, PhD
  Oct 25, 2007 at 4:38 pm

  Actually it will probably be another several years/a lifetime of being right in step with Charlie—a good life, it is.

• Regan
  Oct 25, 2007 at 5:18 pm

  Without taking a public stand on the particular point, because I can’t speak for someone else, the possibility does raise discussion points of right to choose and right to life.

  That said, genetic testing might make possible the ability to be prepared both mentally and to stage a positive environment much earlier and proactively than is currently possible.

  I would be for the possibility of genetic screening.

• Amanda M
  Oct 25, 2007 at 5:27 pm

  Amy said….
  “I’d call it a feminist issue.”
  while Regan said
  “possibility does raise discussion points of right to choose and right to life.”
  let’s take what Amy said…
  say abortion is just a feminist issue (i dont believe its just a feminist issue any more the environment is just a political one)
  but lets say Amy’s right
  if a woman’s right to choose supersedes any possible rights an unborn human being would have….
  if a woman can choose to abort her child for any reason she wants…
  (and in this country she can)
  what does it matter whether its an autistic or nt?

• Kassiane
  Oct 25, 2007 at 8:47 pm

  This scares me a lot. There are too many reasons to list in a comment…but…

  a) False positives-there so many factors in autism. How many of those babies ID’d as autistic wouldn’t actually be on spectrum?

  b) False negatives-since there is likely a threshold point, there would be a huge increase in lawsuits because OMG MY BABY IS AUTISTIC! because, like, they had 14 markers not the cutoff 15 or whatever.

  c) Frankly…if you want a kid you want a kid. If you don’t, you don’t. If you do not want a child, you will find a way to bitch about whatever child you get regardless of neurology.

  Deciding that a group of people is devestation and pouring money into preventing them doesn’t sit right with me, regardless of what they have that supposedly makes them so devestating.

• Regan
  Oct 25, 2007 at 10:42 pm

  Kassianne said,
  “Frankly…if you want a kid you want a kid. If you don’t, you don’t. If you do not want a child, you will find a way to bitch about whatever child you get regardless of neurology.”

  With due respect to your point, my thought is that these things may be more unpredictable, subtle and individual than that. My daughter was not planned; in fact we had one of those rare failures of birth control. I went through alot of soul searching because of being well over 40 and some other issues. We decided to go ahead, even though, as has been pointed out–termination is legal, and abstractly, I support the right of choice. I had screening, and since it all was thumbs up, I can’t say what I might have done or thought otherwise.
  At a later point my daughter turned out to have autism, and it would be a plain lie to say that we were thrilled…in fact that was a very difficult time for us as parents. Fast forward 8+ years. Life is on the whole, pretty good, she is a great kid (and also very challenged), and, well ,it is what it is.
  So, maybe it is an opinion of one, but I think that this can be very individual, and even on that basis may elude that predictive certainty.

• Kassiane
  Oct 25, 2007 at 11:08 pm

  I guess I wasn’t clear on my POV.

  I wasn’t stating an opinion on abortion one way or the other, as I’ve stated it ad nauseum. I WAS stating an opinion on eugenic abortion. Not being able to care for a kid at the time is different from “Oh i only want a kid if they’re ‘perfect’”, which is a view I have heard. And the inconvenience view. And the money to society view…

• Paula
  Oct 25, 2007 at 11:43 pm

  I don’t remember a huge amount of negative hype about Down Syndrome, yet estimates indicate that 80-90% of Down Syndrome fetuses are aborted. The negative media attention to autism spectrum disorders is much more visible, with Autism Speaks/Cure Autism Now events being held constantly. Were there big rallies and fund-raising events for DS? I know the analogy breaks down because people realize, unlike with autism, that there is not a “cure” for DS. Well, there is, though. Abortion. I think many if not most women who are exposed to the “train wreck” view of autism would elect to abort the fetus. That’s my main reason for disclosing my autism dx to people, so they can see a real human being rather than just reading or hearing about my “flawed brain.” They’ll get to see me and my brain operations up close and maybe make more informed decisions that way.

• so cal
  Oct 25, 2007 at 11:49 pm

  I have experience within my extended family with the practice of “eugenic abortion”. It’s something that’s been happening for quite some time and in some of the cases I know about, it’s practiced by those with (hmm, how to say?) certain connections.

  Anyway, within my extended family it began being practiced in the mid-90s using their take on certain scientific findings. Using aminos, certain possible indicators were used to determine who would be terminated. Eventually, the ‘perfect’ children were conceived.

  What this meant for those in the family with disabilities, is that they were shunned. Pariahs. Invitations to family events stopped. Family pictures discarded.

  Why? I don’t know. Guilt about what they’d done? Not wanting to be reminded of things? No matter. They are the dominant culture within the family and I’ll never know, because we no longer know any of them. Or hear about them. Oh, except when they’re books come out, or they go on speaking engagements or their articles appear in various national magazines. And then I have to laugh at the blatant deception of it all and their fragile, fragile egos.

• so cal
  Oct 25, 2007 at 11:52 pm

  Oh, and one more thing: It was more than simple amnios that were used. It was more like DNA analysis and such; things not generally available unless you have certain connections. Also, some things that at the time were not legal in the US, were done in Europe.

• amy
  Oct 26, 2007 at 12:03 am

  Kassiane wrote:

  “c) Frankly…if you want a kid you want a kid. If you don’t, you don’t. If you do not want a child, you will find a way to bitch about whatever child you get regardless of neurology.”

  Kassiane, I’m sorry, but I don’t think this is true. I have been incredibly lucky with my daughter, not just because she’s a fine human being — which I’m sure most any mother would say about her child — but because she’s been blessedly easy from about 4 months of age. Things with my ex were hard and frightening enough that I’d have been in the hospital, I think, trying to take care of a high-needs child as well. She continues to be a shockingly easy kid. I don’t know how many 4-year-olds calm down after being terrorized with a series of shots when you explain what city summers were like before the polio vaccine, and why parents were so grateful when it was invented.

  “Not being able to care for a kid at the time is different from “Oh i only want a kid if they’re ‘perfect’”, which is a view I have heard. And the inconvenience view. And the money to society view…”

  well, I’d change “not being able” to “not wanting to”. I imagine, for instance, that I would be able to raise another child. But I don’t want to. Again, I don’t want to pose this as “abortion is an in-extremis, desperation choice”. It’s a choice. Personally, I’ve never heard anyone say they’d only want a perfect child. I don’t know of anyone who expects a perfect child — I’m not even sure I know what that means.

  Maybe I should clarify. When I had my amnio done, I knew I would have an abortion if the child had any genetic abnormality that meant it was likely the child would not likely grow up to be independent, would be unusually expensive to raise, or would have a devastating disease like Tay-Sachs. In other words, while I wanted to be a mother, I wasn’t willing to turn the rest of my life over to it to that extent. Not knowingly.

  Amanda M. writes:
  “if a woman’s right to choose supersedes any possible rights an unborn human being would have….
  if a woman can choose to abort her child for any reason she wants…
  (and in this country she can)
  what does it matter whether its an autistic or nt?”

  Nicely put. It matters to the woman, child, and family involved, I’d say. I’d point out that right to choose has limits, btw; it’s very difficult to find 2nd-trimester abortion providers in the US (hard enough to find 1st-trimester in many places) and illegal after viability.

  I agree with Regan, btw, that the knowledge can allow time to learn, reconcile, adjust.

• so cal
  Oct 26, 2007 at 12:11 am

  “btw; it’s very difficult to find 2nd-trimester abortion providers in the US”

  Not difficult at all. I know of those who’ve easily gotten them at nearly 20 wks. For well-over a decade now.

• amy
  Oct 26, 2007 at 1:49 am

  Look outside so cal, so cal. In this state there are few providers who will do it. In at least one neighboring state there are none. That’s what makes the amnio so hard; it’s not done till about 16 weeks, which means that if you want an abortion you really have to decide within a few days, schedule, and go in. I can’t imagine what it must be like for women who make that decision and then find they’ll have to go a few hundred miles to a strange city to find a doctor. I’ll be very grateful when amnios are replaced by screens done much earlier.

  Here’s an interview with a doctor who provides 2nd-trimester abortions in Minneapolis; she talks about how far her clients travel, and the effects of med schools dropping the training or making it optional:

  http://www.prch.org/publications/Profiles/hanson.shtml

  And I guess that’d be germane if we’re talking about a genetic screen. Yes. Earlier would be better.

• so cal
  Oct 26, 2007 at 2:28 am

  I’m talking about outside So Cal amy. But, of course, I’m talking about those with the means. And that has nothing to do with location.

• Amanda M
  Oct 26, 2007 at 6:19 am

  2nd trimester abortions are easy to get here, just a short out of state drive.
  I think (obviously) that it isnt just a choice issue.
  lets take disability/autism out of it for a minute.
  if people decided to abort their child because it was a girl, would that be ok? hey do it in China and India - those parents dont want the burden of raising a girl in a pro-male society (talk about a feminist issue!) -so they can abort right? its ok…its their decision right?
  say Watson and his ilk came up with a prenatal test for homosexuality. Homophobic parents could abort…they wanted a heterosexual- so hey, its their decision - right? (bet some gays would be as angry as some autists are about the prospect)

  an argument might be…
  “but hey…gays and women are different than disabilities…”
  they are people still arent they?
  not just a feminist issue, -its ethical, its moral, its about personhood, its about societal attitudes.

• Kathy
  Oct 26, 2007 at 7:28 am

  I have no respect for selfish people who abort a human being.

  This not a dog we are talking about!

  No matter what disability the baby may have!

  It’s no excuse.

  Life is precious.

  And, always remember, we are all, in some way or another disabled.

  Remember too, that one day you in your old age may need special care.

  You know, I am extremely grateful to God for my dear sister-in-law who has Downs Syndrome.
  She has brought such happiness and joy into the lives of many.

  It’s a sobering thought though, that had she been conceived in the 21st century to permissive parents, well, in all probability she may never have been born.

  That would most certainly have been, a huge and tragic loss..

• Amanda M
  Oct 26, 2007 at 8:59 am

  I would add that if you really believe that
  “if a woman’s right to choose supersedes any possible rights an unborn human being would have….”

  but then to say that a woman’s right to choose has limits…
  you are contradicting yourself.
  if her right to choose has limits- theres more to it than just the feminist viewpoint stated above. there is so much more to be considered…a lot to talk about, including society (family, doctors, autism organizations) putting parents under pressure to abort.
  if her right to an abortion is more important than anything else- then anything goes…

• amy
  Oct 26, 2007 at 9:14 am

  Kathy,

  Oddly enough, I still have respect for people who trample on the rights of women. I expect they have reasons and some sensibility behind their speech. Maybe it’s too much English lit, you know, all that humanity in Iago.

  Amanda — the viability law comes courtesy of Blackmun et. al., not me. There’s a good discussion on the topic at bitchphd, archived. As for “reasons to abort”, well, I think it defeats the purpose of the argument here (which is “it’s not that bad raising a kid with autism!” v. “no, that’s more work than I want,”) to take autism/disability out of the picture.

  I have to run — will come back & follow up on the other points, incl. the Chinese policies — later. My short answer, though, is that the reason ain’t none o’ your beeswax. If the woman wants to abort, she wants to abort. As women are the people who carry and, for the most part, raise the children, and take the social, physical, and financial hit for it, I’m very happy that it’s our decision.

• Cliff
  Oct 26, 2007 at 9:26 am

  Amy, I know you and I have had a discussion on this before, so I’m not going to repeat that here, so this isn’t really directed at you, but I will note for theoretical reasons as much as personal reasons I take issue with abortion that decides between kids. Even if you have to give the kid up to adoption, there’s the issue of homogenizing people, and even to the degree that Amanda points out and well beyond. I’m not for forcing people raising a kid they aren’t ready for, but I am significantly worried about selecting kids. In this regard, adoption is very worthwhile.

  Basically, in a rule, if you’re not ready to have a kid of any kind, go ahead and abort, but selecting kids is at a minimum dangerous. And if you have a kid you can’t handle, give the kid up to someone who can take care of the kid.

  Cliff

  Cliff

• Cliff
  Oct 26, 2007 at 9:27 am

  Bah, where did that second signature come from? Odd…

  Cliff

• Amanda M
  Oct 26, 2007 at 9:36 am

  perhaps I mistook your first post…
  but it seemed you were saying that whether autism is devastation rhetoric having an effect on whether or not a couple chose to abort was not really an issue because hey it was their decision. I disagree with it being merely a women’s feminist issue.
  I also dont think it’s unreasonable to take autism/ disability out of the equation and replace it with another minority group….thats what you are talking about - a group of people who for whatever reason are marginalized, discriminated against, abused. do they not have a right to LIFE liberty and the pursuit of happiness?
  I would also say that a society that thinks its perfectly fine to kill a “defective” baby wont be too inclined to accept the “defective” adult.
  (we must agree to disagree on this point I think)

  Could you agree (which was my point of my first post) that with the current autism as epidemic/devastation climate the woman (couple) who makes the decision to abort based on autism diagnosis is in serious danger of making said choice based on misinformation (which then isn’t much of a choice at all)?

• Kathy
  Oct 26, 2007 at 9:36 am

  So, murdering a helpless human being who cannot defend itself is no one else’s business eh?

  I’m not interested in reasons.

  Only in justice and the rights for the unborn!

  There are many childless couples who would dearly love to adopt. Even a child with a so called disability.

  ” If a woman wants to abort, she wants to abort yadda yadda yadda..”

  Like I said, selfish!

• Amanda M
  Oct 26, 2007 at 10:00 am

  Kathy -if it is the unborn child you want to have a chance at life you must try to understand the reasons why some would abort, you must try to
  work for alternatives…
  a pro-abortion mentality will not be changed by legislation, or angry blog posts.
  it is peoples hearts you must work to change (like Kassiane or Paula’s efforts regarding autism) you must appeal to those potential parents, to the personally opposed but…fence sitters, and to those who are pro-choice
  and you cant do that effectively if you lose your temper (i have learned this from personal experience)

• Kathy
  Oct 26, 2007 at 10:24 am

  But, Amanda my dear, I have not lost my temper.
  Just stating the cold hard brutal facts.

  This notion of it being the womans choice to abort is absolute nonsense.

  What is a good enough reason for abortion Amanda, eh?

  Unfortunately the majority of abortions are performed for selfish reasons.

  Now, if a woman had been raped, well one could sympathize. If a woman had been forced , coerced or threatened by a partner, again, one could understand.

  Reasons like:

  I don’t want any more children.
  I can’t afford it.
  I want to go back to work full time.
  I want a life of my own.
  My partner said he would leave if I didn’t abort.
  I don’t want to ruin my figure.
  My child will be born with a disability….

  As I said , selfish..

  Suffer the little children!

• Amanda M
  Oct 26, 2007 at 11:05 am

  ok Kathy, instead losing one’s temper lets call it- making extremely emotional sounding statements that will only discredit the point you are trying to make…
  as for understanding reasons
  how about the young girl..lets say 19, is having sex with her boyfriend and for whatever reason…contraception fails. she gets pregnant. She has her friends, professors at her college, and even her mother telling her to get an abortion. she really doesnt know much about development to realize she’s carrying a baby, they dont talk about that much in school. she’s sick, she’s scared, she doesnt know what the father will think, she doesnt realize life might not be too bad, doesnt know that there is support/options available to her - because pro-choice groups regularly lobby against “right to know” laws-and are generally successful. she is prone to peer pressure. and her “friends” give the information to the closest clinic.
  is her choice a real choice of selfishness?
  i was pregnant at 19. I had all the pressures listed above save being prone to peer pressure. I had the blessing to be roommate of the right to life president at my college, i was blessed to be pulled aside by a nursing professor and handed a model of a ten week old baby (they look unbelievably like human beings to be considered not-really by those who think first trimester ab is ok) and i was blessed not to give rats as* as whether my peers approved of anything. not every girl in that situation has that chance….

  as to whether its a woman’s “choice” to abort..the cold hard facts are that just or not it is the law here. just or not it is societies views that make it acceptable, children disposable, AND people that arent like everyone else nonpersons.

• amy
  Oct 26, 2007 at 12:37 pm

  Well, I’m not going to get into an ethics-of-abortion-in-general debate, because it isn’t a debate when the starting points are irreconcilable. So Kathy, I wish you well, but we disagree.

  Amanda, I appreciate the moderacy. Disposability involves much more than abortion, btw. And I would respectfully suggest that women are not disposable either.

  Cliff, I appreciate the fine-tuning. I notice that costs to the mother plays no role in your talk, which is not surprising because they’re overlooked in general socially; we are simply expected to give ourselves in ways that men are not (and the response can be quite angry when we decline). For your reading list, I’d suggest, again, Joan Williams’ _Unbending Gender_, Nancy Folbre’s _The Invisible Heart_, and Ann Crittenden’s _The Price of Motherhood_ as a starting point. Williams is a lawyer at AU, Folbre is an economist at Amherst, and Crittenden was an NYT journalist. (I read Crittenden while I was pregnant, and I said, “Oh crap, I thought we fixed that.” She turned out to be right on the money. Oops.) My take is that Crittenden’s a little shrieky but makes an excellent point about power structures. Folbre’s not above using the handwave instead of the demo and twists Dawkins terribly, but is still worth reading, and makes a compelling argument about the our dependence on a vast invisible economy — the free and often socially coerced labor of women. I very much respect Williams’s argument in the first half of her book and think she’s the best of the three, but dense and dry going.

  If you read these, you may begin to see why the issue of costs of motherhood is a big deal. And why a woman might reasonably reckon them when looking at an amnio result, knowing that the estimate has suddenly jumped astronomically.

  And as I’d mentioned before I don’t think homogenization is a likely problem, first because in practice it seems not to work out that way (unless you have a one-child policy like China’s, and you’re essentially encouraging parents hard to cull according to social pressure); second because if the issue is in fact genetic the carriers will remain, meaning you could switch autism back on whenever you pleased; and third because frankly you can have some pretty homogenous populations and they get along quite nicely. Iceland, for instance. Japan. Until recently, the world’s Jews. All some very long-lived cultures and at various times quite dynamic. It’s not something I’d advocate on purpose, but I don’t think it’s likely to be a serious problem if it happens (and I doubt it will anyway).

  Amanda, you’re talking about abortion based on social distaste. -Isms. When I’m talking about my own choices, I’m talking about abortion based on work and expense — personal, real, daily costs to me, and the likelihood of being able to recover from them. I figure I can recover from the costs of having a reasonably normal kid, and that’s why I not only wanted to have one but was willing to. Yes, my work, health, finances, standing in the world take a hit now. And for the next couple of decades. But the odds are very good that after she’s grown, I’ll have few decades largely to myself again, and I’ll recover much of that. (That’d be less true if I made more money. Ann Crittenden is right about the financial cost of motherhood for professional women.) For me the wildcard is likely to be my own health, and I was willing to take the gamble.

  To short-circuit: If you go rhetorical and accuse feminism of sponsoring autistic fetal genocide, feminism will be unpleasantly rhetorical back, and tell you that on the contrary, abortion rights empower women to choose to give birth to and raise autistic children; and feminism puts women in positions of power, where we can work for policies that recognize the work of mothers and create support for families with autistic children. Like, for instance, workplace policies that are supportive of genuinely part-time tenure tracks, and a level playing field for business so that everyone can support caregivers who need to leave the office at 3 pm.

  Of course, I’m not a fan of the rhetoric on either side of that kind of exaggeration, so I’d rather skip it altogether.

• Amanda M
  Oct 26, 2007 at 1:24 pm

  wow…for having a disdain for rhetoric you do use a lot of it.
  its no exaggeration that genetic testing and attitudes have led to the disposal of people with down syndrome, ( 2002 literature review of elective abortion rates found that 91–93% of pregnancies with a diagnosis of Down syndrome were terminated) …its not extreme to worry the same will happen to autistics.
  but then…the way to ignore a problem is to say it doesnt happen…or if does happen it couldnt THAT happen much

  -Amanda

• Amanda M
  Oct 26, 2007 at 1:37 pm

  i’m not a moderate in any sense.
  Come January you’ll find me in D.C -my little aspies and I are typically hanging with the teens under the West Virginians for Life banner. (will you be there Kathy- we’re the really pale ones) I vote for pro-life candidates -those with a consistent life ethic -that believe me when i say this- no political party holds (if you think Republican automatically means pro-life you are out of your mind)
  I voted for my Democratic governor based on his previous voting record regarding life issues.
  I try within my community to offer teen girls who are in the position I was that indeed they dont have to fear choosing life.
  i hope to show through my family life that autism does NOT equal devastation and that these kids are far from burdens.

• amy
  Oct 26, 2007 at 2:20 pm

  I’d meant your moderacy in not frothing at me.

  “i hope to show through my family life that autism does NOT equal devastation and that these kids are far from burdens.”

  To you. Your kids, to you. Others may reasonably see and experience it quite differently.

  “wow…for having a disdain for rhetoric you do use a lot of it.”

  I think you missed the end of the sentence. I don’t like the nuclear-option rhetoric involved in saying that abortion = genocide or the disingenuous feminist rhetoric in response, both illustrated in that paragraph.

  I agree that, depending on how the test works, the vast majority of women would probably choose abortion. Some would not. And if you were only talking about the “burden or not” question, then you’d just have the job of proving to women’s satisfaction that no, it isn’t a burden, and it isn’t substantially more difficult, exhausting, impoverishing, etc. than having a more-or-less normal kid. Neither this blog nor the reality I see down the street persuades me of these things, and I don’t think you’re going to be able to pull it off in general. The Downs people have been trying for quite a while, and I think their success is very qualified. And for good reason.

  But I think you’re conflating your two issues: Right to life, and the realities of having autistic children. To you they may seem one and the same. But in practice, for many women, they are separate. If you persuade women that having an autistic child is not a serious burden, then your right-to-life issue is moot. Doesn’t matter what they think of abortion. They’ll have the kid.

  I think the problem here is that you and other advocates are trying to persuade people that they should want some transformation, some hero’s journey. And very few people will seek that on their own. The hero’s journey involves a death of the former self, a profound and painful death of self. That’s why, for instance, Frodo has to be practically shoved out the door and down the road. It takes a Siddhartha to go seeking. I doubt it helps to hector the rest, or to be angry when they don’t want what you’ve seen.

  As for “disappearance of ______” arguments…I find them chilling, and no different from eugenic and “save the white race” arguments, frankly. You want women to serve as vessels and parents, willing or not, in order to preserve a certain strain in the population, a certain culture.

  Those who want to preserve autism will preserve it, just as those who want to preserve Downs will preserve it — though I doubt very much they think in those terms when they make the decision. In any case I would question seriously the morality of forcing others to do it.

• Kassiane
  Oct 26, 2007 at 3:24 pm

  The biggest problem with this test, all moral arguments aside, is…there IS no way of seeing how accurate it is. With Down Syndrome you can look at the fetuses and do a karyotype and say “oh shit, false positive”, and obviously there are false negatives as well.

  At this point in time autism is diagnosed by behavioral criteria, not a genetic test. So obviously telling how many false positives there were is going to be absolutely impossible, since for the most part autistic kids look like everyone else.

• so cal
  Oct 26, 2007 at 4:08 pm

  “if people decided to abort their child because it was a girl, would that be ok? They do it in China and India”

  They do it here as well. At least in the case of terminating all boys. I know those who’ve done it.

• amy
  Oct 26, 2007 at 6:00 pm

  Kassiane, all the decisions are based on risk. We don’t get absolute certainty.

  I don’t do karyotyping, btw, but I wonder how often you’d really get a false positive with Downs. I mean you can count them chromosomes, they’re not that small, and you wind up with one extra. I’d imagine most of the uncertainty has to do with degree of disability.

• amy
  Oct 26, 2007 at 6:02 pm

  Oh. So cal, you sure know some freaks out there. You know lots of people who’ve had 2nd tri abortions? And you’ve seen people abort based on sex? Where do you work?

• so cal
  Oct 26, 2007 at 6:14 pm

  Don’t misquote me amy. Re-read what I wrote. I stand by it.

• Kassiane
  Oct 26, 2007 at 7:01 pm

  Amniocentesis is what they do the Down’s test with.

  It isn’t based on a karyotype, which is accurate (more or less…there’s always mosaicism, within which there is no way of telling the degree of disability, there isn’t even for NONmosaic DS). It’s based on protein markers within the amniotic fluid. Same with prenatal tests for neural tube defects…I highly doubt theyve changed since I learned about them in high school. They do karyotypes AFTER THE FACT to check the accuracy of the test, and like any medical test there is of course an error rate.

• Kristina Chew, PhD
  Oct 26, 2007 at 7:48 pm

  An antidote to this discussion would be Ralph Savarese’s Reasonable People: A Memoir of Autism and Adoption.

• Kathy
  Oct 26, 2007 at 9:21 pm

  Yeah, you are right of course, Amanda.
  I guess I did get a bit worked up last night.

  I can also understand the position of a 19 year old girl who gets pressured to have an abortion.
  Thankfully you did not succumb to pressure, though many poor girls do!

  Many subsequently need counselling, too, as I am sure you are aware.

  And no,I don’t think it is a selfish act under the circumstances.

  I would love to join you, only I live in Western Australia.
  I am however pro- life(I guess you noticed huh?)I support the “Right To Life” movement here in Australia.(Financially and through prayer as well.)

  I too, only vote for pro- life candidates.

  I wish you well in your good work Amanda.

  And Amy, at least we agree on something.. I wish you well too!

• amy
  Oct 27, 2007 at 12:07 am

  so cal, I’m genuinely curious. I’ve never met anyone or even heard friend-of-friends stories about anyone who’s had an abortion at anything close to 20 weeks, and I’m good buds with a woman who runs a landmark clinic. (20 weeks LMP is the legal limit in my state, btw, and there’s only one clinic that will perform abortions that late.) Never met or heard of anyone who sex-selected that way, either. Both are shocking to me. I wondered if you worked in some clinic where you do actually see a large number of these cases coming through.

  Kathy, I’d like you to back up that “many need counseling afterwards” with a proportion and citations. Some appear to be fine with it ever after. See the stories at http://www.imnotsorry.net/ . Krista Jacobs, I think her name is, has a similar book with collected stories of women who were glad the choice was available.

  Kristina, I’ve heard Savarese on the radio and he sounds like a remarkable man. And no, these conversations aren’t nice, but I think they’re necessary. I have to say I’m wondering now where the pro-choice, pro-fetal-screening autism parents are, and whether they feel they can speak openly.

• Kathy
  Oct 27, 2007 at 1:38 am

  Amy,”Giving Sorrow Words” by Melinda Tankard Reist(Australian journalist and women’s rights activist) is a good start for you.
  I don’t have my copy at the moment but here is an excerpt from a web link, that is a good summary.

  Abortion has been presented as a simple procedure that allows women to put the crisis of an unintended pregnancy behind them.
  The women in this book were told they’d be able to get on with their lives after abortion.
  But their lives would never be the same.

  “Giving Sorrow Words” includes the personal accounts of 18 women who have had abortions and draws on the experience of more than 200 others. These women share their stories of personal suffering and loss- stories that have often gone unheard in a society eager to dismiss abortion related trauma.
  Melinda Tankard Reist examines the experiences of women, including the lack of resources and support, misinformation and lack of informed consent, and the intense pressure and coercion applied by partners, families and society in general to force women into unwanted abortions.

  I know personally of women who “were not fine with it ever after” as you put it.
  My Grandmother being one of them. She had two abortions, and it forever haunted her in later years.
  When she finally told my mother,some ten years before she died, my Grandmother, said she would often wake to see two little girls at the foot of her bed.

  Guilty conscience, or genuine apparations???

  The fact was, my grandmother suffered immensely over the years as a result, of those abortions.

• Amanda M
  Oct 27, 2007 at 7:28 am

  http://www.silentnomoreawareness.org/
  (started by women who deeply regret their choice)

  http://www.wisegeek.com/who-is-norma-mccorvey.htm
  (short article regarding norma mccorvey (jane roe) in roe vs. wade- as well as mention of her book denouncing the abortion industry.

• s c
  Oct 27, 2007 at 3:35 pm

  amy:
  Sorry I’m I didn’t understand you were genuinely curious, the fact that you called them “freaks” threw me off. And, no, it has nothing to do with “work” (that would be violating all manner of ethics and HIPAA regs. to boot). I”m already uneasy about discussing this too much further. IF you re-read what I wrote I mentioned extended family. I thought that was clear. Additionally, I know of … let’s just say acquaintances. The sex-spinning thing has been used by some who have asd boys … and the cure for them is to have a girl — at any cost. As for your “look outside so cal” statement, none of this took place w/in so cal until of late. Initially, ppl went to (now i’m going to be vaque-ish because I’ve already said too much) somewhere english-ish in the UK and then somewhere east coast-ish in the US. And finally, these individuals would be part of certain socio-economic groups who can easily spend tens of thousands, have no need to involve insurance, and get generally get whatever if they want if it can be gotten. ~FINIS~

• passionlessDrone
  Oct 27, 2007 at 3:44 pm

  Hi Amy -

  “To you. Your kids, to you. Others may reasonably see and experience it quite differently.”

  This kind of disconnect happens all the time on both sides of the autism discussion. What appears alarmingly rare is the ability to see that other people might have opposite, and completely valid ideas.

  “And if you were only talking about the “burden or not” question, then you’d just have the job of proving to women’s satisfaction that no, it isn’t a burden, and it isn’t substantially more difficult, exhausting, impoverishing, etc. than having a more-or-less normal kid. Neither this blog nor the reality I see down the street persuades me of these things, and I don’t think you’re going to be able to pull it off in general. ”

  Excellent summarization. Nicely done.

  - pD

• Kristina Chew, PhD
  Oct 27, 2007 at 5:12 pm

  I’ll keep trying to “pull it off” in specific ways if not generally…. best wishes.

• Kristina Chew, PhD
  Oct 27, 2007 at 5:16 pm

  @ amy—regarding these “conversations not being nice”: it was long ago that I wrote “bring it on!“. All part of the dialogue and thanks very much.

• amy
  Oct 27, 2007 at 8:58 pm

  Thanks, Kristina.

  Kathy and Amanda: In your replies I don’t see anything that answers this directly:

  “Kathy, I’d like you to back up that “many need counseling afterwards” with a proportion and citations. Some appear to be fine with it ever after. See the stories at http://www.imnotsorry.net/ .”

  No stats with cites from Kathy. Amanda, I’d be surprised if some women didn’t regret abortions. However, that doesn’t dissolve the fact that some women seem to be quite relieved that they had abortions and were able to get them legally. I truly doubt that any woman kicks up her heels on leaving the clinic and says, “Whoo-ee, let’s do it again,” but I think relief is often apt.

  While we’re at it, let’s talk about “I couldn’t imagine my life without my child(ren).” I never quite know how to react to that one when someone says it. I figure the options are (a) they’re lying; (b) they’re unimaginative; (c) they had their children when they were children themselves, and really do find it hard to imagine being a grownup without kids; or (d) they’re sentimentalizing to the point of self-delusion, and want me to go along with them. Usually I do, because usually we’re not talking about it in the context of abortion rights, and I am persuaded that if we didn’t sentimentalize children we would eat them, if only to get them to stop making noise. I don’t ordinarily quibble with survival mechanisms.

  However. Of course I can imagine my life without my child. It’d look very much like the life I used to have without my child, the one I had well into my mid-30s. It was pretty nice. There are aspects of it I’m going to be very happy to return to when my daughter is old enough to despise me and closet herself in her room for hours trading gothic sympathies with her bff. I can’t even talk about the things I’ll be able to get back to when she’s old enough to move out, because I might get dizzy with anticipation and fall off my chair.

  Am I glad I had her? Sure. (Well. Except for some early-morning moments when I open my eyes and the first thought that crosses my mind is, “Oh. You’re still here,” followed by, “Aren’t you going to be 18 soon? I want to read the Times in peace.” Then the nifty sentimentality kicks in and I think about how precious and beautiful her mouth-breathing inspection of me is, and get up to make breakfast.) What’s not to like about a 4-year-old in a tiara who’s furious about immigration quotas? And there’s no other way to know what parenthood is. It’s enriching, it’s deepening. It yields presents I never looked for. But, to tell the truth, so do other things. I was never one of these “a child at all costs” people.

• Kristina Chew, PhD
  Oct 27, 2007 at 9:07 pm

  Plenty of “autism advocates”/parents who talk rather about how they can imagine life without an autistic child. I can and I’m good with the life I have.

• Kathy
  Oct 27, 2007 at 11:00 pm

  Read Melinda Tankard Reist’s book Amy!

  Only the most hardened of people would not be moved by how traumatized and affected these women were after abortions.

  “Some appear to be fine with it ever after”

  Well, this book clearly shows that many are not!

  “No stats with cites from Kathy”

  READ THE BOOK!

  The accounts of these women clearly prove that they have been, and continue to be (affected)

  Or don’t they count?
  Do you think these are fairy tales?

  I know also of women myself who have had counselling, to try to come to terms with their grief after an abortion.

  My point is, that many women ARE affected by abortion.

  I urge you once again to read the book.
  Then come back and tell me, that these women were not affected.

  Trying to undermine the credibility of the evidence in this book by haughtily demanding I provide stats and citations, will not change this fact.

  Your diversionary tactic,
  “Show me the stats or it isn’t true ,”
  ain’t gonna work with me, Amy my dear.

• kyra
  Oct 27, 2007 at 11:23 pm

  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.

• Kristina Chew, PhD
  Oct 28, 2007 at 1:19 am

  “Educate Autistic (and All) Kids Now!”

• amy
  Oct 28, 2007 at 1:45 am

  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.

• amy
  Oct 28, 2007 at 2:06 am

  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.

• Kathy
  Oct 28, 2007 at 7:37 am

  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.

• Marla
  Oct 28, 2007 at 10:48 pm

  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.

• Amanda M
  Oct 29, 2007 at 12:36 pm

  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!

• amy
  Oct 29, 2007 at 1:38 pm

  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.”

• Kristina Chew, PhD
  Oct 29, 2007 at 5:11 pm

  Then: Some children, however skilled, accomplished, and independent, may end up needing their parents’ assistance in other ways. Once never knows.

• Cliff
  Oct 29, 2007 at 6:49 pm

  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

• amy
  Oct 30, 2007 at 2:56 am

  :D Cliff, we’re people. We don’t have the intellectual maturity to get out of bed in the morning, and yet we do. Do we have the moral authority? Do you mean “by what right”? If so, I’m with Burke, and say we make the rights we find good and necessary. I’m not a theist. But if you want to talk about authority to make choices, then abortion is the very tip of the iceberg. People pay for us to sit comfortably and type here.

  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.

• Cliff
  Oct 30, 2007 at 7:21 am

  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

• amy
  Oct 30, 2007 at 3:25 pm

  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.

• gack
  Oct 30, 2007 at 3:51 pm

  amy — what’s your dx again?

• amy
  Oct 30, 2007 at 3:56 pm

  “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.

• Cliff
  Oct 30, 2007 at 4:00 pm

  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

• Cliff
  Oct 30, 2007 at 4:08 pm

  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

• gack
  Oct 30, 2007 at 4:30 pm

  What Cliff said.
  [Brilliantly and politely, too.]

• amy
  Oct 31, 2007 at 5:16 pm

  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.

• amy
  Oct 31, 2007 at 5:25 pm

  gack, I have so far avoided being tagged with a diagnosis, though I am sure there are people who’d enjoy doing it.

• Cliff
  Oct 31, 2007 at 8:08 pm

  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 y