Say no to Down syndrome

There's a NY Times article about how some parents of children with Down syndrome are trying to prevent genetic testing and abortion of fetuses with the syndrome. I find this attitude repugnant.

According to the article, new technology allows doctors to determine if a pregnant woman's fetus has the syndrome without a possibly risky amniocentesis. This means there is no longer any need for children to be born with Down syndrome. There is no longer any need for society to waste money on research and expensive care for people with this syndrome.

Women who would still choose to give birth to such a baby should not be given any taxpayer funded medical care or special education for their children's problems.

Comments

[Φ]

But why stop at Down's syndrome? How about Spina Bifida? Or Cystic Fibrosis? Or Tay Sachs? Or any other childhood disability, like blindness or deafness?

What if improvements in genetic testing allow us to detect IQs under 70?

Why don't we deny taxpayer subsidized assistance to anyone who could have been aborted, but wasn't? We could have a perfectly Darwinian society: succeed and thrive, or perish!

This last has the virtue of internal consistency, but as long as the social contract allows for government sparrow-catching, it is not clear why the parents of mongoloids, who presumably pay taxes too, should be singled out for disfavor.

[The Engineer]

Yeah. That's pretty harsh. Abortion is already morally shaky, and now you're going to for all intents and purposes coerce certain women to get them?

It is pretty amazing to me the negative attitudes that people have to Down's Syndrome kids. There is something wrong with our society when the worst thing that could happen to you is to have a kid with Down's Syndrome, or any other birth defect.

Anyway, I don't think that HS's coercive policy will be needed. 90% of down's syndrome kids are aborted already. If there is an easier and less invasive test, it will be used by most women who "need" it, and that percentage will increase significantly.

People with Down's Syndrome are an endangered species.

[Buckaroo]

It's unlikely that this thread of discussion will have a favorable light/heat ratio since it intimately involves abortion.
I would simply point out that this is yet another illustration of how the logical evolution of socialism inexorably leads either to the system's collapse [can't possibly pay for all the things people expect for "free" from the government] or to grotesque restrictions on people's personal and economic freedoms [we won't help with your retarded child - you should either kill it or support it yourself which you can't do since we've confiscated half of your income to pay to people who will play ball].

[Half Sigma]

The Engineer wrote: 90% of Down syndrome kids are aborted already.

No, only 90% of those who are actually tested abort their Down syndrome fetuses (not kids).

This demonstrates the general consensus that aborting a Down syndrome fetus is the morally correct thing to do. Now we need to test the rest of the population not being tested.

Taxpayers shouldn't have to fund the 10% with non-mainstream ideas. If they want to pay for the kid themselves, fine, but not on my dollar.

Did you ever consider the burden on society of ugly fat girls? Ugly men can still be productive, disproportionately so in many cases. But ugly girls will be a major drain of resources and be unlikely to attract a husband to support them, and thus it will fall on the general taxpayer.

With the rapid loss of traditional ugly girl occupations such as accounting or phone operator, this population will experience disproportionate underemployment and need to be supported by an array of social services -from welfare and unemployment, depression, suicide, mental health bills, weight loss surgeries etc... They are also more likely to have drunken one night stands and have children out of wedlock; another burden on the general tax payer.

Thats the situation in the West- what are Eastern families supposed to do with an ugly girl? Not being able to marry her off without crippling dowry, she will be a steady drain on her extended family.

Ok, we dont have adequate pre-natal tests to detect ugliness today, but how hard would they really be to develop? Checking for cleft lip or fat genes is something that could be done today. If initial tests discover a girl, the mother could be sent more more extensive testing of the fetus.

Even a 1 or 2 point increase in the general attractiveness of girl children could be a great benefit for families and rate payers.

[axolotl]

"It is pretty amazing to me the negative attitudes that people have to Down's Syndrome kids. There is something wrong with our society when the worst thing that could happen to you is to have a kid with Down's Syndrome, or any other birth defect."

What, exactly, is wrong? You are implying that there is or was a society where this wasn't a crushing blow to a family. In the past, downs syndrome and other severely deformed and retarded children were left to die in institutions. Before that, they were likely killed by the midwife or left to die by the mother. So when was it accepted as a normal part of life?

We are not talking about a cleft palate, or a deformed limb. This is a pervasive syndrome that affects functionality and lifespan.

[axolotl]

BTW, I've seen other articles on the kind of parents that are seeking to stop prenatal testing.

They treat their affected children as dumb pets. One family (in an old CNN.com article) even adopted another downs syndrome kid to be a "friend" to her own downs child, and teach her other children a lesson! Other families interviewed were gushing about how their downs children were angels sent to teach about love, since they love everyone. They did not treat them as humans. Plus, downs children are not eternally happy - a lot of them turn violent when they get older. I wonder how these families will handle that.

[mondo]

All the screening tests tell you is how high a risk your child runs, and the current risk cutoff seems to be set absurdly low enough to generate alot of false positives, fright, and additonal testing. My sister-in-law (who is in her twenties) went through this a year ago. According to the sonogram and blood tests in her first/second trimester, her child ran a risk of something like 1 in 60 of having trisomy 21 (the risk cutoff according to one website for the initial screening is 1 in 250). This created a scare in our family until the amniocentesis came out, from what I recall, mostly negative. The mathematical truth, as interpreted by doctors, can be unnecessarily scary to the average patient.

[mondo]

I think the controversy in this article seems to be generated by the large number of false positives many expecting parents have now gone through, and not the issue of whether or not to abort(since most families will). This is the real problem with neonatal testing, since it's really not accurate enough. If my nephew was considered "high risk" at 1 in 60, that means there were 58 other high risk but normal infants with worried parents and only 1 who had Down's syndrome.

[JewishAtheist]

Women who would still choose to give birth to such a baby should not be given any taxpayer funded medical care or special education for their children's problems.

Are you nuts? First of all, you'd be punishing the child for the actions of his/her mother. Second, allowing the government to deny benefits because of blame is a huge can of worms. Will you deny special ed to kids of moms over 40? What about kids who were allowed to eat McDonald's every day? What about kids with moms with IQs below 80? Etc.

[Φ]

. . . non-mainstream ideas

Um . . . yeah, that must be why I hang out at Half Sigma: we're so in the mainstream! ;-)

[The Engineer]

This demonstrates the general consensus that aborting a Down syndrome fetus is the morally correct thing to do.

It demonstrates no such thing. Morality is not open for a vote. Something is either moral or it's not, irrespective of how the majority or vast majority act.

What about the women who don't get the test (and thus don't abort)?

[The Engineer]

I agree with JA that this opens up the eugenics can of worms. However, it is technology and abortion that opened up that can of worms a long time ago.

After all, 90% of the women with the positive downs syndrome test are getting an abortion. THAT'S the statistic that bothers me, not HS's idea of pulling funding from the other 10%.

[David Alexander]

What about kids with moms with IQs below 80?

I'd imagine that sterilization and abortion of anybody with an IQ below 100 would be popular amongst certain classes of people who visit this website.

[turkey]

I'm a bit skeptical of that 90% figure. The old method of detecting Downs is to pick up hints with ultrasound and then confirm with amniocentesis. Since amnio has an element of risk for the fetus, I'd think that most women who wouldn't abort would turn down the amnio. If someone were prone to cherry picking figures, they could find a startling one "behind" the amnio step.

I remember researching it due to a family situation last year, and the study the 90% figure was drawn from was not available online and didn't fix the method in the abstract. I didn't feel like tracking it down at the time.

[Spungen]

By the time a Down Syndrome diagnosis is made, a mother has probably seen her fetus moving around at least twice on a sonogram. In fact, while they're doing the amniocentesis they use a sonogram. You start to feel pretty attached to the fetus. I could understand a mother not being able to terminate the pregnancy after that.

[Peter]

I've seen other articles on the kind of parents that are seeking to stop prenatal testing. They treat their affected children as dumb pets. One family (in an old CNN.com article) even adopted another downs syndrome kid to be a "friend" to her own downs child, and teach her other children a lesson! Other families interviewed were gushing about how their downs children were angels sent to teach about love, since they love everyone. They did not treat them as humans.

Behavior like this sounds ridiculous, but I would imagine that most of the parents are just trying to cope with an impossibly bad situation and end up acting in ways which, to outsiders, seem strange. We should give them the benefit of the doubt.

[Kurt9]

What can I say about this issue that is appropriate and not said before? First, I do not have kids and do not plan to have them. So, I think it inappropriate for me to tell those who do plan to have kids what their choice should be.

I will say two things about PGD and the so-called consumer "eugenics" that have not been said here:

First, if socialization of medicine results in the taxpayer being put on the hook for the medical costs of all of the babies of the country, you can bet donuts to dollars that those same taxpayers will demand that only "healthy" kids be born into this country. You can use your imagination as to what "healthy" means in this case. This will be the reality of socialized medicine. Don't like this reality? Then work to stop the socialization of medicine. If not, do not blame the taxpayer for the outcome.

Second, as we rant and rave about "consumer eugenics", the Chinese "Just Do It". Do bear in mind that they have 4 times our population, a population with a mean IQ 1/3 SD above ours, and 10% annual economic growth rate. What do you think 2040 will be like?

[Jason Malloy]

But why stop at Down's syndrome? How about. . . Tay Sachs?

Indeed, Tay Sachs has already been eliminated. Jews are leading the way with eugenics:

It became an international effort, fueled by passion and involving volunteers who went to synagogues, Jewish community centers, college Hillel houses, anywhere they might reach people of Ashkenazic ancestry ... If two people who carried the gene married, they were advised about the option of aborting affected fetuses ...

Thirty years later, Tay-Sachs is virtually gone, its incidence slashed more than 95 percent. The disease is now so rare that most doctors have never seen a case.

Emboldened by that success and with new technical tools that make genetic screening cheap and simple, a group is aiming even higher. It wants to eliminate nine other genetic diseases from the Ashkenazic population

More here. The process of eliminating genetic disease in developed nations is well underway:

"40% of infants with any one of 11 main congenital disorders were aborted in Europe"

[Φ]

Jason: It appears from the article that the primary weapon against Tay-Sachs is premarital genetic screening rather than abortion.

But my point was not that we shouldn't try to eliminate genetic diseases, nor even that couples who are carrying a child afflicted with Down's Syndrome should be denied abortion (though I happen to think abortion is immoral).

My point was that if, in the era of socialized healthcare, we start to deny benefits to people based on a calculation of their net fiscal worth to society (or some such), we start a process whose logical end-point may not be where we want to go.

[The Engineer]

What do you think 2040 will be like?

Good point. It's also related to my question in another topic about "mental steroids". If there was a drug that made you smarter, would it be "fair" to take it, just like is it fair for baseball players to take steroids.

You can damn well be sure that if there were mental steroids, the Chinese would be taking them.

Did you guys see "Serenity" or "Firefly". I though that it was interesting that Chinese obviously was the dominant culture in those sci-fi shows, like Japanese was in "Blade Runner". That's pretty perceptive.

[The Engineer]

Jews have children? Who knew?

Okay, slight exageration. But you can't deny that Jews have as many children these days as Italians or Koreans. 50% of that 95% reduction could just be from plummeting birth rates.

Well, except for those wacky Hasids.

[JewishAtheist]

It's not fair to compare Tay Sachs to Down's Syndrome. Tay Sachs is a terrible disease that's almost always fatal by age 4. People with Down's Syndrome have issues, of course, but it's not even in the same ballpark. It's also 100% avoidable without abortion by testing couples for genetic compatibility (i.e. not both being carriers) before marriage. That's what's currently done in Orthodox Jewish circles.

[Gannon]

If women were haing their children when nature intended to (late teens, early twenties) we wouldn't even talk about this. Now of course that women are haning theri children in their middthirties this issue will continue to grow. Since I oppose abortion per se, I must speak against this proposition. Abortion is murder,and murder of any kind of person is wrong, doesn't matter if he has serious disabilities.
Ah, and there are no ugly girls at 18.

[Alex]

I'd imagine that sterilization and abortion of anybody with an IQ below 100 would be popular amongst certain classes of people who visit this website.

I don't think sterilization is necessary since you can achieve the same results through genetic engineering/genetic screening.

The only problem is getting society used to the idea of genetic engineering/genetic screening.

Low IQ people are a burden to society. I don’t understand why so many people are uncomfortable with the idea of “designer babies”?

I mean, poverty and crime are largely linked to low IQ, and yet conservatives and liberals seem to not want to use genetic engineering/genetic screening to solve this problem.

[The Engineer]

I mean, poverty and crime are largely linked to low IQ, and yet conservatives and liberals seem to not want to use genetic engineering/genetic screening to solve this problem

Alex, could you elaborate on exactly what you mean? What would this genetic engineering/ screening involve?

If it's an amnio test for intelligence that then leads to abortion, I am not on board. But other forms of genetic engineering might be acceptable to me. Widespread use of Aderall, for example.

Also, we had a story in the news yesterday that the average todler watches 4 hours of TV per day. Now, that is lowering that kid's IQ. Not even debatable. Yet, who's buying all those Baby Einstein videos? Not "Latisha", or "Juan".

How hard it is to keep your kids from watching fucking television? Yet people won't even do that, even ostendibly intelligent people. What makes you think that people will submit to genetic engineering?

[JewishAtheist]

Alex:

There's a HUGE difference between parents "designing" their own babies and government forcing their "designs" on people's babies. If having children isn't an inalienable right, I don't know what is.

[Half Sigma]

If having children isn't an inalienable right, I don't know what is.

But there's no right to make OTHER PEOPLE pay for their expensive special education and medical problems.

[Alex]

Alex, could you elaborate on exactly what you mean? What would this genetic engineering/ screening involve?

I am thinking about the screening of embryos. A couple who would want to have children would go to a genetic specialist, and he or she would make the pairing of egg and sperm and implant the embryo in the woman's womb. Once scientists figure out the genes involved in intelligence, this would be possible.

[Half Sigma]

Once scientists figure out the genes involved in intelligence, this would be possible.

And people who don't believe that intelligence even exists couldn't possibly complain about this, could they?

[Axolotl]

I will admit there is a difference between Down's Syndrome and Tay Sachs, in that the lifespans are 49 vs. 7 years. However, Down's Syndrome does come with its health issues, even if these dont cause incredible suffering.

I just remembered that I saw one of those baby shows on TLC where a young Hispanic couple was having a baby. They were told early on that the baby had Trisomy 18 (or 13, I don't remember which). They decided to go forward with this pregnancy because one of the doctor's told them it was "like Down's Syndrome". So they went through a complicated pregnancy (likely on Medicaid) and talked of watching the baby grow up. Either of these trisomies has a lifespan of less than one year, and all are dead before adulthood.

"Also, we had a story in the news yesterday that the average todler watches 4 hours of TV per day. Now, that is lowering that kid's IQ."

Please explain.

[David Alexander]

The only problem is getting society used to the idea of genetic engineering/genetic screening.

A couple who would want to have children would go to a genetic specialist

Yuck, no more natural impregnation. Now you've taken out the only remotely fun part of raising a child.

Also, we had a story in the news yesterday that the average todler watches 4 hours of TV per day. Now, that is lowering that kid's IQ. Not even debatable. Yet, who's buying all those Baby Einstein videos? Not "Latisha", or "Juan".

The people who are buying those Baby Einstein videos are high-IQ people who have children who would have done well regardless of those videos. Latisha in contrast is doomed to a miserable future even if her mother purchased the DVDs for her.

And people who don't believe that intelligence even exists couldn't possibly complain about this, could they?

There are people who don't believe that intelligence doesn't exist? Even my ten year old nephew raised in the ghetto can tell you that intelligence exists.

Widespread use of Aderall, for example.

What I've noticed about the Asian kids at school is that they have a tendency to be very obsessive about the activities that they're performing. It's almost as if high IQ is essentially the ability to focus obsessively over a subject. Plus, the ADHD symptoms almost sound like the same attributes that people give to those with low IQ...

[The Engineer]

Please explain.

Watching TV is not conducive to brain development. This is why the APA recommend that children under 2 watch no television whatsoever, and older kids be limited to 2 hours of "Seseme Street" and like material (not the shit they see on Fox and Nickelodeon in the afternoon).

I see this with my own kids. They're slack jawed drooling idiots when they watch TV, even Seseme Street. When they're playing, they're so focused and engaged in what they're doing, there's no comparing the two activites. And when they're not at school, they should be playing, not watching TV.

[The Engineer]

A couple who would want to have children would go to a genetic specialist, and he or she would make the pairing of egg and sperm and implant the embryo in the woman's womb. Once scientists figure out the genes involved in intelligence, this would be possible.

I don't know how well this would work. If the parents don't have the genes for intelligence in the first place, this won't work. All this will do is make sure that the highly intelligent don't "regress to the mean".

What you need to do is splice in the genes for intelligence.

More likely, you develop drugs or other treatments that replicate the processes that create intelligence.

Like Aderall, for example. It allows you to concentrate better and focus on your work. Just the thing to make students learn more.

[SFG]

What I've noticed about the Asian kids at school is that they have a tendency to be very obsessive about the activities that they're performing. It's almost as if high IQ is essentially the ability to focus obsessively over a subject. Plus, the ADHD symptoms almost sound like the same attributes that people give to those with low IQ...
I wonder if Asian societies have a slightly higher proportion of genes that predispose to Asperger's in excess quantity. Notice the intricate rules in Japan to deal with many forms of social interaction; while there are plenty of friendly and outgoing Asians, the general spectrum seems shifted toward introversion. It's not a matter of everyone being a nerd, simply of everyone being slightly nerdier and society being different as a result.

It also would explain the increased willingness of Asian women to date nerdy guys; if the ideal man is hardworking, studious, and polite rather than outgoing, athletic, and expressive, more slightly nerdy guys will fall into the realm of acceptability.

These traits don't seem to be harmful on a societal level; does anyone think China's inability to produce lots of athletes is going to keep them from becoming a world power?

[David Alexander]

And when they're not at school, they should be playing, not watching TV.

The problem is that when they're playing, they make noise, destroy shit (like expensive furniture), and require being watched. When the TV is on, they just sit there and leave the parent alone to do their other tasks.

Oddly, with my niece and nephew, TV bores them, and one hour or so of it seems to be unable to keep them entertained. They can't even sit still to play video games for more than thirty minutes either.

[David Alexander]

One of the weird things about Asian culture is that one would expect lower levels of corruption than in the Western world due to their higher IQ, but they're just as corrupt if not more corrupt. The only difference is that their political leaders don't view the business classes as the enemy.

does anyone think China's inability to produce lots of athletes is going to keep them from becoming a world power

China's increasing economic might will give them much more influence on the world's stage. In turn, this will allow their military spending to grow and in turn spend more lavishly on R&D projects to counter our high-technology systems. Given that wars and less and less based on true manpower and more on technological advantage, it's not so much of a problem. Plus, there's nothing prohibiting the PLA from giving their soldiers massive amounts of steroids in case of war.

It also would explain the increased willingness of Asian women to date nerdy guys

It's also probably connected to the fact that Asian women have limited opportunities for financial independence (and career growth) when compared to their American and European counterparts.

[mondo]

Economic might is separate from political and military might. The Chinese are economically mighty as long as they're willing to work for American dollars for less. The same went for the Japanese in the 80's. It went for the Chinese back in the 1600-1800's with the silk and tea trade, until there was a huge imbalance in silver reserves, and the West responded with the Opium Wars. Today, we can just keep printing money as long as the rest of the world accepts our currency, which they will as long as we're perceived to be able to influence the world militarily.

[Alex]

I don't know how well this would work. If the parents don't have the genes for intelligence in the first place, this won't work. All this will do is make sure that the highly intelligent don't "regress to the mean".

Even dumb people can have smart children, it is only less likely (in a probabilistic sense). All you have to do is screen for the genes, and select the embryo that satisfies the gene test requirements.

Although, you could also do gene splicing (it might be more effective at getting large gains in IQ). I guess it depends on how advanced the technology to do this gets.

More likely, you develop drugs or other treatments that replicate the processes that create intelligence.

Like Aderall, for example. It allows you to concentrate better and focus on your work. Just the thing to make students learn more.

What are the IQ gains (in points) of using Aderall and do you have a copy or link to the studies that show this? I am skeptical of IQ gains from using this drug. I have heard it makes you concentrate better, but I would like to see solid proof (double blind studies) that show an IQ gain on an approved IQ test.

[Axolotl]

http://cpj.sagepub.com/cgi/content/abstract/44/5/405

Here is a study showing "significant" gains for children on adderal or ritalin after 1 year. The average change was 7 points on overall IQ. The gains were greatest in "processing speed" (on WISC-III), which presented a 10 point difference. The control group presented a 3 point gain overall, and lost 10 points on performance speed.

Anecdotally: I was put on Ritalin by a neurologist at age 10 (not for ADHD though, but for overconcentration). I was given thorough IQ testing before, and 1 week after. My performance score had lagged in the first test and affected my overall score, but matched my other score at the second (a >10 point difference). So, this fits with my experience.

[mondo]

Asian women are attracted to nerdy guys because asian women tend to be nerds as well. Even if she appears well-dressed and knows how to put on makeup, she was a nerd in childhood.

[fuggy]

In the recent past most Down Syndrome newborns died shortly after birth because they were premies and/or of heart defects and/or intestinal blockage.
It is greedy doctors who have saddled families with this disaster.

A friend of mine's body and nature tried to end the life of her Down Syndrome baby. Her body ejected it 7 weeks early. Nature gave it holes in the heart and intestinal blockage--any of which would have killed her in the old days. $300,000 in medical bills later the doctors let her take home her Down Syndrome baby with a doctor-created very long life-expectancy.
If you give birth at home to allow nature to claim back its Down Syndrome newborn I supppose you will go to jail? I was not able to purchase health insurance the last time I was pregnant due to pre-existing conditions.
A $300,000 bill would have wiped out all our savings and left us in debt forever. Why do the doctors get to do this to people?

[Axolotl]

Because then they get to write up a very nice case report in a medical journal, get in a local paper, and brag to their friends.

Every time I see a news story about the latest "earliest premie ever to survive", I cringe, because the lifelong health and mental problems wont pop up until long after the jubilation is gone and the doctors have forgotten the parent's names. Although, I'm sure the parents will still be paying off the long-term NICU bills at that point. What is the cut-off between a miscarriage/spontanous abortion and a premie if a baby can now survive at 4 or 5 months?

[Rain And]

Clinic to weed out embryos with a squint:

"The licence was granted by the Human Fertilisation and Embryology Authority (HFEA) to Prof Gedis Grudzinskas . . . He said: "We will increasingly see the use of embryo screening for severe cosmetic conditions."

He added that he would seek to screen for any genetic factor at all that would cause a family severe distress.

When asked if he would screen embryos for factors like hair colour, he said: "If there is a cosmetic aspect to an individual case I would assess it on its merits.

"[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it."

[Avi]

Rain And, that piece has 'Brave New World' all over it.

[Flockmom]

There is a basic belief (unfounded) that children born with down syndrome are mentally retarded or handicapped. This is not true and has been based on non controlled for studies. To this day we do not know what this population is capable of. There are those who are typical and do everything any other child does. So the DS is not what people should be worried about, but instead a heart problem or a thyroid problem, etc. Many babies are being aborted who first of all probably don't have it (because the tests aren't 100%) and second of all who might not have any problems at all.
We've got to get a clue with this one and stop making decisions based on past assumptions.

[Rob]

Flockmom,

Are you claiming that lots of people with trisomy 21 appear and behave normal, so they aren't counted in with the mentally retarded developmentally disabled Down Syndrome population?

Or are you just a member of the retarded babies are fun crowd?

[Flockmom]

I'm saying that it is a myth that they are automatically developmentally delayed and yes, they appear and behave normal. Some are, but not all and it is not definitive that a baby will be (delayed) at birth. There are things that contribute to the possibility of developmental delays including medical issues, hearing and sight loss (undetected and untreated), and low tone and social issues (like being institutionalized - like in romania). If these are dealt with, then you have babies who develop typically or very close to that.

"member of the retarded babies are fun crowd" - I'm not a member, but I would say we need to learn a lot more tolerance in this society. Bunch of whiners we are (on all sides). I just wanted to address the widespread myth about all DS kids being developmentally delayed. When they talk about the different possibilities with this syndrome for some reason people believe that DD isn't a possibility but an automatic. This just isn't true anymore.
Thanks for asking.

[SFG]

I was actually under the impression there were no Down's children with IQs over 80. Do you have a reference or something for this? It really is not what I learned in science class at all, and while conventional wisdom has been wrong before, I am curious.

More tolerance would be nice. With our strong focus on competition I don't think it's likely.

[Flockmom]

There hasn't been a lot of true research about it and what is out there is very old and doesn't control for institutions, medical treatments, home environment, etc. There are DS kids and adults now who are integrated into regular schools, holding down jobs and apartments, having real and regular conversations, going on to college and even grad school. I think the two got tied together back when research was weaker (like around Dr. Down's days). We now know that any children raised in institutions have many delays and severe social problems, that prematurity may result in delays and autism, and of course if a baby is undergoing multiple medical procedures early on it is not getting the developmental stimulation time that it needs. It is not until the past few years that doctors upon telling a parent that their baby has down syndrome have said "the sky is the limit now adays, we don't know what can happen", before then a dark picture was painted often resulting in depresion in the mothers, which is then linked to delays in a child. All of these things can be corrected for meaning that the DS itself does not cause delays but the symptoms it's presented with in the individual, the way it is interpreted, the IQ of the parents, and more make or break the situation. I could go on and on about how this works, but won't.
I'm currently researching this and looking for articles, so if you find any, let me know. What's out there doesn't match the high achievers that I have met on a regular basis: models, actors, college grads, educators, skiers, etc.
Thanks for being curious!

[Axolotl]

Flockmom - I think you are using Autism awareness stats that you have confused for Downs. Asperger's and High Functioning Autistics can do all the things you say. DS kids can not. One is a spectrum illness (or multiple illnesses). The other is a well-studied single cause defect. And the studies are not old.

Here is a study from 1999 by Deb and Braganza of ALL DS adults over age 35 (so without fatal defects) in 5 health districts in Wales.
http://www.blackwell-synergy.com/doi/full/10.1046/j.1365-2788.1999.043005400.x
IQ breakdown: "Fourteen subjects (22.6%) had mild (IQ 70–50), 41 (66%) had moderate (IQ 50–35) and seven (11.4%) had severe intellectual disability (IQ 35). " Not one approached a normal IQ, let alone an exceptional one.
In addition, All DS adults over 40 exhibit Alzheimer's type features on autopsy

This study from 2000 looked at outcomes for 30 year olds with DS that had been followed since birth.
http://www.blackwell-synergy.com/doi/full/10.1046/j.1468-3148.2000.00003.x
It states that all other longitudinal studies have found average IQ's in the 50s and acheivement unchanged since childhood. This longterm study found mean IQ to be 41 at age 21, with academic acheivement equivalent to 54-92 month old children (about 4-7 year olds). 60% of the 30 year olds lived at home, with the majority of the rest living at institutions

Are you sure these high-acheivers had Trisomy 21? And not an autism spectrum disorder or something else that you misheard?

[Axolotl]

Also, the mean mental age for the cohort of 30 year olds Downs adults in the second longitudinal study was 5 years, 6 months. It was the same at age 21.

[Flockmom]

Thanks for the articles. I'm sure it was Down Syndrome. In the USA and Spain, there are DS people who are attending colleges and graduating and so on. What I'm finding with studies is that they are very small populations, they haven't controlled for certain issues, and they don't assess performance accurately.
We really are at the beginning of understanding the condition and the potential of the individuals with it. I'm too tired tonight, but I'll pull some things and post them regarding the issue.
Even "Smith's Recognizable Patterns of Malformation" says that due to early intervention and an understanding of the issues, the performance of this population is yet to be determined (2006). This is because this is all relatively new. It's also become commonly known that if a DS person has severe delays they most likely have other issues such as autism.
More later...

[Rob]

Axolotl,

The Alzheimer's-like plaques are interesting. Do you know how old DS children are when they develop them? It's pretty interesting that we have a second population that has the disease.

Do they have a different Alzheimer's etiology ,or is it just because the age quickly?

[Axolotl]

Rob: The study said all DS cadavers over age 40 had them, and that a large percentage of DS adult individuals had dementia. I think it has something to do with the increased aging.

Flockmom: I still think you are making a mistake. You are blaming Autism for making DS children seem retarded - when it's autistics that are on a spectrum containing both a relatively small non-functional population, and a relatively large functional population that goes to college, marries, looks normal, has high IQs, and produces further autistic children. It's autistics that have other medical issues (fragile-X, etc..) that contribute to retardation in non-functional individuals. In fact, one reference states that a longitudinal study of autistics and downs children showed that autistics showed improvements in language and basic intelligence over time, and DS children did not. The same book said that the intelligence of DS individuals diagnosed early declines with time in every longitudinal study (Sigman and Ruskin, 1999). A major longterm study of outcomes by J.H. Carr (1995, 2000) agrees.

The studies I cited above were only two of many longitudinal studies of adult Downs patients from the past 15 years easily found on google scholar. The studies included every DS individual born in a single year, or living in a single area. An anomaly (like a college graduate with a 100+ IQ that looked normal) would have been presented as a case study (such as a DS woman with good verbal skills above her 65 IQ was the subject of one - Rondal, 1995)! The closest there is to normal DS is mosaic DS, where not all the cells are trisomy. Is it this you have confused with classic DS? These people still dont have high or normal distributions of IQ.

The closest things I can find to what you are talking about, are a book noting that some DS individuals have better language skills than their IQ would suggest, and points out a painter of the 19th century that had DS. These are used as examples of savantism (Rondal, 1995).

Can you please tell me what page of Smith's book you took that quote from, and exactly what it says? All the summary articles I'm finding say only that we cannot know exactly how mentally retarded and disabled DS individuals will be based on diagnosis at birth, and some may be only mildly retarded (but still slow). Not even the summaries based solely on that book say anything about high achievement.

[Flockmom]

This is what I have found so far:
The information that low intelligence and alzheimers are definite in this population is a myth, they are a possibility. Alzheimers only effects 25%. I personally know two adults with DS right now. One is 23 yrs and in college and a teaching assistant to preschool (She has also lobbied before congress ). The other is 41, does not have alzheimers, and holds a job, collects hats, is a movie encyclopedia, and is currently educating himself on dogs (like any typical person would, with encyclopedias and such). Considering that he was born in a time when they recommended institutionalizing and had a mother who had to fight discrimination every step of the way, he’s doing very well. It has been proven with other populations that discrimination holds people back.
This is taken from another person’s blog on neonataldoc. It has some good sites in it.
“There are most certainly children with full Trisomy 21 who have normal IQ's, including my child. Her most recent eval showed an IQ of 72, not "high normal" or "above average" but perfectly within range of "normal".
Most people with DS are in the mild category of MR, and some do fall in the normal range. Interestingly, as time goes on and children have access to better supports and services, the IQ range is moving ever higher. IQ scores range from 20 (severe mental retardation) to 85 (low normal). http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/syndrome/down.htm

there is a great deal of variation in these deficits. The severity of intellectual disability varies by the order of 50-60 IQ points among both children and adults (Carr, 1988), and Pueschel and Hopmann (1993) report wide variation in communication skills across a wide age-spread of children with Down's syndrome. Such variation, caused by both biological and environmental factors, impacts on the level of academic attainments of these children (Laws et al., 2000).
altonweb

Such a pessimistic view is challenged by Rynders et al. (1997) who argue that misinformation and too little information about the educational potential of schoolchildren with Down's syndrome have led school teachers, psychologists and other school personnel to have low educational expectations of these children. In general, the findings of studies of the academic progress of children with Down's syndrome through secondary school and beyond support this viewpoint.
It is reasonable to suspect that much of the research evidence based on studies with children who were at school during the 1970s and 1980s may still underestimate the potential for academic attainment
http://www.altonweb.com/cs/downsyndrome/index.htm?page=academics.html

another good link:
http://www.nichd.nih.gov/publications/pubs/downsyndrome/down.htm

Here are a couple of sites of people I’ve come across and some organizations:
Pablo Penada (going to graduate school): http://www.dsa.org.mt/magazine_2004_june_06.htm
http://www.hno.harvard.edu/gazette/2001/03.15/05-wolfe.html
www.ndss.org
www.museum.wa.gov.au/exhibitions/online/downs/html/images.htm

This is some of what I have found so far. I am working towards some articles of my own regarding this issue. I think that it has been overlooked that some of the resulting problems that DS people face like prematurity, heart problems, and hearing loss have now been found to be linked to developmental delays in the typical population who experiences them. Why this has not been applied to the DS population, I do not know. Children and adults with this diagnosis are blowing the myths out of the water every day.
A great article on discrimination is http://home.vicnet.net.au/~borth/DOWN1.HTM

[Flockmom]

Oh, page 9 and it says
"Early development enrichment programs... have resulted in improved rate of progress in the first 4-5 yrs of life. Whether such programs will appreciably alter the ultimate level of performance remains to be seen".

Although this is the newest version, I'm not sure they've changed this in a while since these programs have been in effect for a while i would say. And if they are new, then bringing the kids back home instead of institutions created people like Chris Burke, then the early intervention stuff should augment that. It remains to be seen.

[Axolotl]

I hate to break it to you Flockmom, but 72 is a very low IQ, and not near average. Two-thirds of the population has an IQ right around 100 (85-115, or 90-110 depending on the test). The prevalence of an IQ of 72 is equivalent to the prevalence of an IQ of 128. 128 would be considered gifted and above average. 72 is extremely below average, and borderline retarded (since IQs tended to vary by 5-10 points depending on the test). This is the recorded upper limit for DS and not unexpected. An IQ of 72 would likely never graduate high-school, let alone go to college. The 50 to 60 point range in IQs in your one source is the 20 (severely retarded) to 85 (borderline below average) range cited in your other source.

I just told you that the articles I found state there are college programs like the one your friend is in, that train DS adults for tasks that can be done at their level - like teachers assistant. It speaks nothing to their IQ, and is not college in the sense you are thinking of. The difference in progress in your last source is still referring to degree of learning disability and retardation - not the possibility of high acheivement (associated with the average college grad with an IQ of 115-120).

The Alzheimers effects are found on autopsy and may not show symptoms in life. The characteristics you mention for the man in his 40s are connected with the savantism referenced in one of my links. It does not indicate a higher than expected IQ.

In other words, I don't see anything out of line with the typical reports of low IQ and delays associated with DS.

[Half Sigma]

It's not in my habit to judge arguments in the comments, but in this case I have to declare that "Flockmom" is wrong.

[flockmom]

Ok, now I'm angry. You showed your articles i showed mine. I have the gifted IQ (much higher than the one you mentioned). I showed real life proof in my documents I sent to you. The guy did graduate from college and he did it on his own.
The articles you showed me had flaws. I spoke to some of them in my response.
You are not entitled to "declare" anyone wrong. What special privilege do you own? Credentials? You obviously don't have any experience with the population.
You just want to stay blinded by your prejudice. Bring on your white hood.
Flockmom signs out...
Thanks for demonstrating your closemindedness.

[Spungen]

So the DS is not what people should be worried about, but instead a heart problem or a thyroid problem, etc. Many babies are being aborted who first of all probably don't have it (because the tests aren't 100%) and second of all who might not have any problems at all.

Flockmom, I understand that the test is in fact 100 percent correct. The trisomy disorders are chromosomal, and the doctor examines the fetus's chromosomes by collecting a sample through amniocentesis. I don't think there is any ambiguity.

[Axolotl]

I'm a biologist working on a graduate degree in a top tier program. I interpret scientific data for a living.

I saw your links, they did not match your interpretation. There's no prejudice here, I am pointing out the facts on the ground. Down Syndrome = Mental Disability if not Mental Retardation (if you'll note, I pointed out that another heavily talked about syndrome, Autism, does not). Plus, we are dealing with averages here. Pablo Pineda (likely mosaic DS based on looks and acheivement) is the equivalent of a 170 IQ (assuming the average for DS is 50 and that guy is 120). The articles themselves point out that he is the only person with DS ever to obtain a regular college degree - one in multiple millions (although it says nothing of a grad degree). His likeness has not been found in any longitudinal study. Chris Burke and the other girl you linked to play DS adults on television, basically playing themselves. You originally said you personally knew multiple grad students, actors, and models who acted completely normal and that they were a significant percentage of DS adults - not just one or two outliers who still display all the physical symptoms of DS. Anecdotes are not data. So, I guess that's it.

And thank you Half Sigma!

[biopsychguru]

I agree with Flockmom in that the abilities of T21 people are yet to be determined. They have advanced from severely disabled in the 1960's to mildly disabled and even normal now(an IQ of 72 is normal, low normal, but normal).
I think the argument is that they shouldn't be written off as useless or a burden to society. They are not to be stereotyped either. The people with T21 who are "high functioning" are either called just that or considered typically developing.
The argument of IQ is irrelevant anyway. There are many ways to test abilities and the IQ test is a very narrow one. Someone with a gifted IQ can often be non functional in society if they do not have the EQ to match it.
All people should be treated on an individual basis no matter what their genetic material says about them. And anyone who questions that or fights to put people into boxes needs to look at what their problem is with that population of people. To admit that perhaps they have a personal issue or two that finds it so important to pull others down.

[~]

I agree with you. 90%(ish) of them are aborted. That proves they are not wanted by a heck of a lot of people. They're fine with them being around, but not in their own home thank you very much.

I agree that they should pay for everything for their own children like the parents of normal kids do, especially schooling. They have less of a future ahead, some none at all, and money should be spent on the future.