How Down Syndrome Works

People with Down syndrome lead rich, complex lives like any other human, but it’s only been in the last few decades that everyone else stopped persecuting them long enough to notice this. As a result, both their IQ and their life expectancy skyrocketed.

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Episode Transcript

Speaker 1 (00:01):
Welcome to Stuff you Should Know, a production of I
Heart Radio. Hey, and welcome to the podcast. I'm Josh,
and there's Chuck and Jerry's here too, and this is
a good old fashioned stuff you should know and it's serendipitous. Chuck,
do you wanna know why? I know why? Oh you

(00:23):
do here? Well, I think you're probably gonna say that
we're recording this during Down Syndrome Month. That is correct, sir,
although it will be released uh in November probably, Yeah,
but still we're recording in down Syndrome Awareness Month. And
I had no idea that October was down Syndrome Awared,

(00:44):
So I think it's pretty cool that it worked out.
Anytime it works out like that. That's right. We're we're
recording way ahead of time. We're trying to bulk up
for our Christmas holiday break that we like to take.
That's right. I voted today early voting. If that shows
you when this is congrats Chuck. And it felt good
to just get or done, get it out of the way.
And it feels good to do this episode because down

(01:08):
syndrome is a condition that is really really really changed. Yeah,
a lot like in our lifetime, like since since the
nineteen seventies. Uh, and how it's how it's viewed, how
it's accepted, and actual health outcomes, and a lot of
those health outcomes actually have something to do with how

(01:30):
it's been viewed and accepted, which is remarkable and sad,
you know, if you're speaking historically. Yeah, yeah, for sure.
But I mean that's just the headway that's been made
things to in large part the disability rights movement. Yeah,
people with Down syndrome have really benefited from that, and
I'm happy it can be about that too, that's right. Um,
we should say from the outset, we're talking about a

(01:51):
group of human beings who, like any group of human beings,
are um, incredibly varied in talent, skills, hopes, dreams, um,
medical problems, facial features, all that stuff. So to say,
like you know, down syndrome people all look a certain
way or they're all happy all the time, is it's
stereotypical and incorrect at the very least, you know. Um,

(02:14):
So we just want to preface all of this that
we're talking in in total generalities here about Down syndrome
people in general. Just keep in mind this is not
some pet group, like any group of humans is not
some pat group, that's right. Although I will say every
kid that I've ever met who had Down syndrome, which
has been a handful, have been some of the most wonderful, loving,

(02:36):
sweetest kids I've ever met in my life, every single one.
And I met some other kids who are just jerks. Yeah,
for sure, for sure, And again it's a it's a stereotype.
It seems to be rooted in a lot of anecdotal evidence.
But just just keep in mind, like the people with
Down syndrome have rich inner lives, and they're happy, sometimes

(02:56):
they're sad, sometimes they're angry, sometimes they're frustrated, sometimes they're
glad sometimes Like again, they're human beings, so just don't
forget that. UM. So again we caveated that by saying
we're talking in general, and this doesn't apply to all
people with Down syndrome, but there are some facial characteristics
that the majority of people with Down syndrome typically have
that um make them readily recognizable. I think, yeah, for sure.

(03:20):
And we should preface this also by saying that at
this point it's about I've seen between one and every
seven and eight hundred babies born in the United States
have down syndrome. So it's kind of somewhere in that range.
And if we're talking typical physical characteristics, almond shaped eyes
that typically slant upward. Um. Sometimes the net can be shorter, uh,

(03:44):
the ears can be smaller um sometimes and some of
these didn't even know. There can be tiny white spots
in the irises of the eyes. Um. Hands and feet
maybe a little smaller. And another interesting one increase a
cross the palm of the hand. Did you ever heard
of that? I had not? Uh. And then small pinky

(04:05):
fingers that sometimes can curb towards the thumb uh and
are generally a little shorter than average. Yeah. They also
typically have UM less than average muscle tone, and loose
joints frequently UM. And one of the things that I
did not realize before but I do now after doing
this research is that a lot of the stuff that

(04:25):
I think people chalk up to cognitive impairment among down
syndrome people are actually the result of UM motor impairment.
They're actually like, like a really good example is speech.
They tend to UM become verbal later than non down
syndrome kids. UM, but it's not because they don't know

(04:46):
how to talk. It's because their mouth muscles haven't developed
enough to actually talk, and that can actually lead to
a tremendous amount of frustration because you're a kid who
is unable to express himself for herself, and you would think, like,
you know this, this kid with Down syndrome can't talk
yet because of cognitive inabilities, and that's just not the case.

(05:07):
It's not the case. Um. There are also medical issues
that are typically arise when you have Down syndrome, and
this is just something that you know that parents need
to know if if you have a baby with Down syndrome,
you're gonna get a lot of information thrust upon you.
And there's a lot of information medically out there. Um.
One of the big ones is a congenital heart defect,

(05:30):
which is about half the people with Down syndrome end
up having this. About half might have some hearing and
vision problems, um, which can range. You know, the vision
can be anything from cataracts to just regular role near
sighted and far sidedness to um uh strabismus which uh,

(05:50):
that is something I've heard of before. That's when the
eyes don't track together. Yeah. A lot of people used
to call it being cross eyed. Yeah, exactly, um. And
then I think later in like the puberty years, they
found that sometimes they can lose their sense of smell.
Is that right, Yes, which is fascinating, And we'll talk
a lot of a little more about that later on

(06:13):
because they may have found a way to treat that incidentally. Um,
but yeah, there seems to be like a decline in
ability to smell and in cognitive abilities around puberty. Okay. Uh.
Thyroid problems can happen, um, usually hyperthyroidism, UH, tummy issues, UH,

(06:34):
sleep apnea or asthma, like some kind of general breathing issues,
childhood leukemia, and then another thing that we'll talk about
a little bit more. Um. And it's very sad, but
Alzheimer's disease can come pretty early sometimes, right. So what
we just did, Chuck, Um, from what I understand is
what a doctor will basically tell a parent when they

(06:55):
find out that their child, or their fetus or their
child in the womb, however you want to put it,
Um almost certainly has Down syndrome. And I saw a
Down syndrome rights activist who was like, yeah, I think
if you gave an expecting parent a list of all
the possible medical problems any person could have like no

(07:17):
one would have a kid. So just bear in mind that,
like there's actually more it can be. It can be
more pronounced than this, it can be less pronounced than this.
This is just kind of the Down syndrome population just
tends to have these problems more than the general population.
That's a good way to put it. Uh, And we'll
talk about this a little bit more too. But your

(07:38):
chances of having a baby with Down syndrome increases as
you get older. So if you're twenty five years old,
the chances about one in one thousand, two hundred and fifty,
and then if you're forty plus that goes to about
one and a hundred UM. But we said, now it
shakes out to, you know, an average of about one

(08:00):
and seven to eight hundred when you take the full
you know, birthen age range, right exactly. I also saw
that somebody who has already had a baby with Down
syndrome is more likely to have another baby with Down syndrome.
UM and you said something about the syndrome being tied
to the mom's age. I saw something like nineties something

(08:21):
percent of Down syndrome cases are the result of UM.
The donation of an extra chromosome by the mom. And
I didn't understand that UM until I saw it explained
by UM an author from an Atlantic article It's really good.
Her name is Sophia Zang, and she explained that UM.
I didn't realize this either. UM. When a woman's eggs developed,

(08:45):
they actually developed while she's a fetus, before she's even born.
Her eggs are are set and they contain one set
of twenty three chromosomes. You put that together with the
twenty three chromosomes carried by a male sperm when they fertilize,
you get a full forty six chromosomes. But over time,
as the woman ages, the proteins that hold those chromosomes

(09:07):
in place and lock them in where they should be UM,
that can degrade, and so they can kind of move
around or do different things, or get copied additionally accidentally.
And that is the basis of Down syndrome. It's also
called trizoni one, which means that there is a third
copy of UM chromosome one. That is that's Down syndrome.

(09:29):
That's what causes Down syndrome. It's the one thing all
people with Down syndrome have in common. Almost all people
I should say not. It doesn't even capture the full
population of down syndrome if you think about it. Yeah,
and like you said, the UM, I think in nine
of the cases when you were born with that extra
number twenty one chromosome, it is inherited from the mother. Uh.

(09:54):
And that is it looks like usually as a result
of the degradation of that protein that's holding everything together.
So it's really I never knew that. It's uh, it's
pretty amazing that we know so specifically how this stuff
works now. I think it was Chromosome twenty one was
the second human chromosome that was fully sequenced as part

(10:16):
of the Human Genome Project, and it's that extra chromosome.
Is that number twenty one that's uh, that causes all
of it. Yeah, I saw that. It's one of the
smallest chromosomes, if not the smallest chromosome, but it's responsible
for UM encoding anywhere from I saw two hundred to
four hundred different genes, and some of those genes expressed

(10:39):
different proteins UM that can be used in more than
one reaction. There's one called nuclear hormone receptor interacting protein.
Awesome name probably not a band name though I don't
think so too much. It's involved in twenty different functions
in the human body, just that one protein that's expressed
by that by one of those two D four hundred

(11:01):
genes on chromosome. So when you put all that together
and you realize how many proteins are involved in how
many different functions, that's how you get kind of this
galaxy of symptoms that make up Down syndrome essentially. Yeah,
and you mentioned that the trisomy twenty one doesn't even
cover the full range of Down syndrome. That is because
that's about the other five percent come from two other

(11:24):
ways that you can have Down syndrome. One is translocation down,
and that is when there is either a piece or
a part or either a whole extra copy of number
twenty one that's out there, but instead of being distinct
and separate, it's attached or translocated to a different chromosome.
And that's the accounts for three percent. And then uh,

(11:47):
and this is I know a kid, a friend of
our family who has mosaic down. That's the third type
and that is accounts for the other two percent. And
that is when um, some of the cells in your
body do have the three copies of the chromosome twenty one,
but others have the two, which is what you usually have.
So it's sort of a mix and they're all kind

(12:10):
of similar. But if you do have mosaic down, then
you tend to generally have fewer of the typical features
that you think of when you think of Down syndrome. Yeah,
they represented by a percentage of cells in your body
that have the third chromosome, and that that percentage reflects
that UM. Also that mosaic um down syndrome occurs after

(12:32):
the egg is fertilized, so it occurs during fetal development,
like a cell divides um differently, and that that third
chromosome is generated in some of the cells. That's why
some of the cells go on to divide. They didn't
have that that um that different division. They had regular
too chromosome or two pair chromosome division. Right. So UM,

(12:53):
that explains one of the mysteries I think behind Down syndrome,
which is how, um, you could have identical twins and
just one of them has Down syndrome and the other
one doesn't. Oh yeah, did you just figure that out?
Like is this breaking news from you? Oh? I see, Uh,

(13:14):
maybe maybe it's my it's my little contribution to the field.
All right. I think that's a good sort of general overview.
Maybe we should take a break and we'll talk a
little bit about I'm just gonna go and say it,
the shameful history of how humans dealt with people with
Down syndrome. Sorry, geh. So, if you're talking human history,

(14:00):
there has always been it seems like Down syndrome. Um,
you you dug up this was that like a clay
sculpture or something. I didn't dig it up, I think
in archaeol just did. But yes, I found it on
the internet. That counts. Friend, dug it up on the internet.
That was from five d CE. That it very much

(14:21):
seems to be someone with Down syndrome. Uh. There are
also been other various works of art. There's a very
famous Flemish painting called the Adoration of the Christ Child
from fifteen fifteen, where there's an angel, quite a few angels,
but one of them seems to have the physical characteristics
that we associate with down. So it has been there
for a long time, but very sadly if you were,

(14:46):
I mean, it wasn't even that long ago. Certainly if
you were, you know, really far back history, your chances
of living with Down was uh, pretty low. Um for
you know, living any any kind of life. If you
lived at all, it's a very short lifespan back in
those days, and then if you did manage to live,
you were probably sort of cast out of society and institutionalized.

(15:10):
And this kind of stuff was going on up until
like the late sixties and early seventies. Yeah, I think
in nineteen sixty in the United States, if you had
Down syndrome, your life expectancy was ten years old. And
again any time you hear like, oh well, the people
in olden days just lived to be thirty five. Now,
so many children died at birth that its skewed the

(15:33):
average life expectancy that far downward. And that's understandable, especially
you know in pre medical days, um, because so many
I think like half are born with congenital heart defects
and that you have to go undergo surgery starting about
three days after you're born when you have something like
that to correct it, and it takes multiple surgeries. And

(15:53):
before the advent of that, yeah, that was you were
not going to live very long as a baby because
you had a congenital defect and no one had any
idea what that even was, let alone how to treat it. Yeah,
it's UM. If you wonder where it gets his name.
In eighteen sixty two, there was a English physician named
John langdon Down that's where the name comes from, who

(16:14):
first identified it. UH. And it was sort of an
important distinction at the time because it did make a
distinction between UM, what at the time they categorized as
a mental disability and an actual sort of well, you know,
it took a long time before they identified the chromosome issue,
but UM, it was a big distinction at the time,

(16:35):
and for many many years they UH in this. You know,
Olivia helped us put this together, points out that this
is very offensive in many different ways. But the term
mongoloid was used UH, and this could be an interesting
short stuff. It was based on the idea that if
you were white and you had Down syndrome, then you

(16:56):
might resemble someone who is East Asian or what they
referred to as Mongolian back then, which was and this
is the part that I think would be interesting is
Johan Blueman Box racial classification UH system, which was Caucasian, Mongolian,
which was East Asian Malayan, which is Southeast Asian, Ethiopian,

(17:19):
which was basically any part of Africa, and then American,
which meant indigenous Americans. Um. Obviously that's super outdated, but
I think it could make for an interesting, like historical
short stuff. I think it might actually be its own
um episode because I was thinking into it. Yeah, and
apparently it's still generally respected even though it is the

(17:41):
terminology is outdated, and of course there's way more um
subcategories of people, and the idea of race is even
considered a social construct now. But Bluemenbach is considered the
first scientist to purposefully divorce racism from science. Yeah, so
as racist as you know, calling someone Mongolian out seems

(18:01):
um like his purpose was to prevent that, to to
just create a specifically scientific approach that's not racist to
um two different types of people. Yeah, maybe we should
tackle that. The long and short of this, though, is
that the term mongoloyd was around, Like I remember hearing
that word when I was a kid. Yeah. That was

(18:23):
Divo's first single in Yeah, that was the first single
they ever released, was Mongoloyd. I love Devo? Yeah, I mean,
otherwise they're they're pretty great, good feeling what a song. Yeah.
The more I listen to them more, I'm like, these
guys were just amazing. And then to think of like
them performing in the late seventies and early eighties and

(18:44):
coming up with this, it's like they weren't working off
of anybody else's stuff. It seemed like they were their
own group. This good kids music too. By the way,
if you're a parent and you have a young kid
and you want to introduce him to cool music, like
something about Diva like really made my daughter dance or
early on, oh do whip it maybe the best song
to dance to and definitely to run to as well.

(19:07):
I have one more little music tidbit um uh music
titles that were unkind to UM people with down syndrome, Uh,
black Eyed Peas. Do you know the UM song Let's
Get It Started? Yeah, that was a re record. The
NBA came and said, hey, can you re record your
song Let's get are worded? Which is the original title

(19:29):
of it? Oh? Really yes, And they re recorded it
for the NBA and ended up releasing it as a single.
It became a huge hit. But that is not Let's
Get It Started as not the original title of that
song or original lyrics. That's true, and that was the
two thousand three that is a black eye on the
black eyed peas sor uh. So that term, the term

(19:58):
mongoloid um, was actually sent to the World Health Organization
in nineteen sixty uh from the nation of Mongolia and said, hey,
maybe you shouldn't be using this word anymore. But it
took a little while for it to catch on that
we shouldn't be using that word. Uh. And now we
just say down syndrome like we should. Yeah, it's not
a downy or a down person or anything like that's

(20:19):
a person with down syndrome like any any other condition. UM.
And that's also why because it's named after John Langdon
down why it's a capital D lower case S when
you spell it out. Yeah, And you know a lot
of people say downs, which is incorrect. But I have
seen that that has kind of become kind of accepted,
and I think it felt a little more like resigned

(20:40):
to than except you can see that so, Chuck. One
of the things that UM is just a real blemish
on the history of humanity, and I think UM, I
hope becomes even more so as we progress as a species. UM.
People with down syndrome. Uh, we're targeted for you an assists.
Like right out of the gate, they were an obvious

(21:03):
population to target. They were considered um completely dependent on society,
a burden to their families, UM. And the premise was
that you either needed to institutionalize them essentially from birth,
like back in the day not too long ago, when
you figured out that your baby had Down syndrome, you said,

(21:25):
here you go, state, thank you for taking care of
this child for the rest of his or her life.
We're washing our hands of him or her or they
were um sterilized against their will or both. Yeah, it's
very sad and shameful. And uh, I mean that that
that's sort of what we've seen in time and time
again of any kind of UM mental issues that people had.

(21:49):
It was just like, you know, put them behind closed
doors where everyone else can just not think about it anymore. Right,
So that's I mean, they were neglected, They were probably beaten.
In many K races, they had no access to medical
care or any kind of stimulation. They were just basically
left to rot for the for the sole reason that

(22:09):
they had Down syndrome. And again this was based on
really faulty information the idea that they would never speak,
that they couldn't walk correctly, they would never be able to,
um uh perform any kind of like socially productive work
or anything like that. There they were just to be
left in these institutions. And finally, in the sixties, the

(22:30):
whole de institutionalization movement that really started to take hold
that we kind of referenced in the rosen hand Han
experiment episode, UM that that benefited people with Down syndrome too,
And so they were released from the institutions and were
now raised in at home in the community, and almost
immediately the life expectancy for Down syndrome people skyrocketed because

(22:55):
it turned out the greatest risk factor for death for
Down syndrome person was being institutionalized. That's how mistreated they were. Man,
I mean that that's hard to even uh swallow, you know, like, hey,
it turns out if we care for people and treat
them as human beings and give them love and healthcare,

(23:15):
then they'll thrive and survive. It's really sad, but it's
it's actually, you know, since the nineteen seventies, um, it's
not sad, it's been wonderful. By two thousand seven, Americans
with Down syndrome live an average of forty seven. Um.
I've seen that number average go as high as sixty.

(23:37):
I think there was an Australian study that edited about
sixty Between nineteen seventy nine and two thousand three, the
rate of death within the first year dropped from eight
point five percent to five percent. And the quality of
life has just been there's been a huge sea change. Uh.
And we're like I said, we're talking within our lifetime.
This was like pre nineteen eighties. Keep we're still being

(24:00):
institutionalized u from infancy infancy sometimes so they were you know,
not necessarily banned, but just sort of weren't brought out
in public, weren't taken to the movies, weren't taken to
parks and things like that. Even in Benjamin Spock, you know,
the very famous doctor Spock who wrote the famous baby book.

(24:23):
This was a you know, supposedly progressive person at the time,
said that, uh, mongoloid babies should immediately be institutionalized, since
if the infant merely exists at a level that is
hardly human, it is much better for the other children
and the parents to have him cared for elsewhere. Yeah,
and This is Dr Spock, who was considered extremely progressive

(24:46):
and arguably the person who ruined the baby boomer generation
by giving poor advice to their parents. But regardless, he
was a very progressive voice. And this is what he
was saying. That's how widely UM assumed this. This, this
whole idea about down syndrome people was that late in
in the century. So UM Again, in the sixties and seventies,

(25:09):
the disability rights movement comes along and says, hey, these
people are being mistreated for no good reason. If you, UM,
you know, if you visit with somebody who has been
raised at home with parents who send them to school
and care about their simulation, they're actually like their i
Q starts to increase tremendously, I think. UM. There was

(25:30):
a study from nine that found that UM down syndrome
people raised in institutions had an average i Q of
twenty to thirty UM and then those raised at home
with stimulation had i Q of about fifty five. And
as people kind of change their perception, or I should says,
down syndrome people changed other people's perception more and more.

(25:54):
They started to graduate from high school, graduate from college,
get driver's licensees, get married UM and just start living
more and more normal lives. Again, depending on the amount
of UM self sufficiency they're able to maintain. Some people
with down syndromes live with their parents for the rest
of their lives. Some people have an apartment with their buddies,

(26:16):
some live alone. And it's just again, it's a spectrum
of what they're capable of or even what they are
interested in. Yeah, and I was about to say, I'd
love to see that study today because that was all
the way in ninety nine. But thankfully you're not going
to get that study today because they're no longer institutionalized
like that. Yeah, there's one part of that study that

(26:36):
I bet that they could just do i Q studies
and a bet that would be even higher. Is what
I was trying to get to. If it was a
good study, you could reproduce it using the same methodology
today and you'd be able to compare the institutionalized to
that you know, stimulated at home. Yeah, that's a good point.
So let's talk a little bit about UH. Development and

(26:56):
this is sort of all over the map intellectual if
it's development social development, and again these are generalizations, UH
and you know you'll see in a lot of cases
that UH, kids with Down syndrome can be behind in
some ways by just a little bit, sometimes behind by
a little bit more, sometimes ahead in other areas. UH.

(27:17):
And it starts at birth basically UM in infancy, things
like feeding UH. And this is because of the muscle
tone issues UM and hypermobility. Things like UM feeding during
infancy can cause problems or you know, problems with feeding
which can lead to constipation problems. UH. They may be

(27:37):
a little smaller physically at first and be a little
slower on the growth curve uh than their peers typically
develop UM. But as they you know, they kind of
catch up as they get older, and that generally improves
and UM those developmental milestones you know, feeding themselves, dressing
and stuff like that. Using the toilet you mentioned speaking,

(27:59):
they might happen a little bit later, right, I saw
it explained as they they can and do develop skills
throughout their lives, but they just reach goals at a
different pace, and all kids reach goals at different paces.
So it's just about setting expectations, is apparent. One of
the things that is available now that is really helping

(28:20):
to increase not just life expectancy but also quality of
life among people with Down synd room is occupational therapy.
They've figured out that basically the moment that you realize
that your child has Down syndrome after they're born, UM,
you want to start different kinds of therapy. I think
occupational to start because it's so hands on and physical.
But UM, some of the things I saw that you

(28:41):
can do at home because they have smaller fingers and
smaller hands and pinkies that curve on average. UM, one
of the things you want to do is help them
learn to hold a pencil properly or you know, manipulate
things with their hands better. So you have them play
with plato or UM paste areos to UM like UM

(29:03):
construction paper or something like that. Stuff that like you
you use like the very fine motor skills for and
then also ones that require like big motor skills like
UM I saw. Focusing on your core is really important
because there's a lot of people with downs RUM are
considered to not be able to engage in self care
because again it's a cognitive disorder disability. It's actually not

(29:26):
necessarily the case in all cases. UM, It's that their
core is not strong enough or toned enough to hold
themselves up while they put on a sock or tie
their shoe or something like that. Yeah. Absolutely, So that's
what occupational therapy does, is helped get that stuff in
order so that they can start to excel and hit
those goals sooner. And the occupation in this case is

(29:47):
being a baby. That's your job. Uh. Social functioning, Um,
it's usually a little less delayed. If you have a
baby with Down syndrome. You might be looking at a
week or two sometimes for things like recognizing faces, looking
at faces, smiling back at somebody, recognizing a smile, uh,

(30:09):
communicating through just like gestures and you know that Google
Gaga type of stuff. Uh. You know, could just be
a week or two. Some kids, UH might have a
greater reading ability than might be typical for someone uh
their age or at their cognitive level. Um, the delays
and spoken language we've talked about a little bit. Uh,
Their math and their number skills might be a little

(30:31):
bit behind, usually about two years behind the reading skills.
But if the reading skills are a little advanced, you know,
it might not average out to be that much farther
behind than their peers. UH. And then you know, there's
so many different ways kids learn these days, and that
kids are being taught according to their needs, which is
the biggest like breakthrough in education of the past, like

(30:53):
a couple of decades, is recognizing that, like not every
kid is in a box and learns the exact same way.
And if you have down syndrome, then you have much
better visual processing and visual learning skills than maybe with words.
So you're gonna be working with your teacher either, you know,
sometimes a special classrooms, sometimes in just the regular classroom

(31:16):
to work with that uh, work with that kid to
you know, teach them a little differently. Yeah, I think
um integrating classrooms together with people of different cognitive levels,
especially you know, if you're now teaching people differently rather
than making them all conformed to one thing, that seems
like that would allow for integrated classrooms a lot more,
which I think is absolutely wonderful. Yeah, and you know,

(31:38):
it happens in all kinds of ways. You talk to
your school, see what kind of support that you can get. Uh.
Sometimes it's just regular class for most of the day,
and then they're specialists who come in for a couple
of hours, maybe every day, sometimes a few days a week. Uh,
if you're um, if you're able to, sometimes you can
hire someone privately to to ass with stuff like that.

(32:01):
But it's it's just you know, be in good contact
with your school and with your teachers, and it's just
a different scene than it was when we were kids. Yeah,
and um, you can thank your federal government for passing
laws that banned discrimination in public schooling against cognitive disabilities.
The Idea Act and then the A D A M
both guarantee um quality public schooling for kids of different

(32:24):
cognitive abilities and uh, in fact like tailored schooling depending
on their needs. Which hats off to that one, because
I can tell you not every state would offer that
if that weren't a law. No, they wouldn't took. I
had one foot up on a soapbox. I'm gonna step
back down. That was very close, very close. So let's
take a break and I can shake it off. How

(32:45):
about that? All right, We'll be right back. Okay, we're back, Chuck.

(33:14):
And before we get started, we just want to give
a little shout out to our ongoing pledge drive for
our friends, A Cooperative for Education, right, that's right, the
great nonprofit in Guatemala that we've been working with for
many years. Let us know that the stuff you should know.
Army since we started working with him, has donated just
about a hundred thousand dollars shy of a million bucks.

(33:36):
So we want to help them get to that million
dollar mark. And there's a really quick easy way to donate, right. Yeah.
They set up a page just for you to go donate. Um.
It's Cooperative for Education dot org slash s y s
K and it's a very painless process. Just chip in
whatever you can and if everybody chips in whatever they can,

(33:56):
then we'll come up with a bunch of money for
COED to use to help kids in the mall to
break the cycle of poverty. That's right. Should we talk
about down syndrome testing, let's because it's a fairly new thing.
Um until I think that really kind of the eighties
is when it really started to becoming much more common.
You were you had no real idea whether your baby

(34:19):
was going to have down syd um or not until
they were born, even sometimes after they were born. That's right,
But now that's different, right, they have different kinds of
tests that they can do. Is early is nine to
thirteen weeks I think, yeah, there are a few different
kinds of tests that can be used together to make
this determination or separately or uh, well, I guess those
are the two ways. Um. The first thing that you

(34:41):
might start with is a blood test, and this is
between nine and thirteen weeks gestation, and that is measuring
um plasma protein pregnancy plasma protein A, which is called
p A p p A. And then something we've talked
about before HC G human uh corean ganata tropin right,

(35:02):
very nice. Um, After that, between eleven and thirteen weeks,
you're gonna have an ultrasound that's gonna measure the back
of the fetus's neck to see if there is any
unusual fluid collecting there. And then a doctor will take
the ultrasound that first test, and they will see the
maternal age and then say, all right, this may be

(35:23):
the likelihood of you having a baby with Down syndrome, right,
And if it's really high, they'll say, we we recommend
you do more invasive testing, because that's the thing. A
blood tests, they're just taking blood from the mom and
checking it out and um, it's not very invasive, but
it's also not quite as accurate as a more invasive

(35:43):
test like amniocentesis. Yeah, and also carries zero risk. The
blood test yeah, UM, although it's risky if you don't
like needles. Well, yeah, that's true. There's also another one
called choreonic villas sampling or CVS and UM. One uses
cells from the placenta. One takes a sample of amniotic fluid.

(36:04):
The annual synesis does and UM. They're a little more
invasive UM and because of that, there is a a
slight chance that the mother will miscarry UM from the test.
And they always blame the tests forever, but now I
think they're starting to think that there's a chance that
in at least some of the cases the miscarriage would

(36:25):
have happened, regardless that it actually wasn't the test that
triggered it. UM and I saw everything from one in
a hundred pregnancies miscarry after the test all the way
to one in nine hundred in Alberta, which is apparently
where you want to get these tests carried out. The
chances much much lower there, but they're they're accurate. That's
why they perform these tests in the first place. That's right.

(36:47):
And then there's a new test sort of the newest
thing going. UH. It's UH non invasive. It's called in fact,
noninvasive prenatal testing and IPT or screening n i p S,
and that analyzes and this is really stuff. It analyzes
fragments of DNA UH from the blood and some of
that is going to come from the placenta, with the

(37:08):
idea that placental cells or placenta cells d n A
is usually identical to that of the fetus. So it's
a really simple way to screen for these abnormalities really
early on, like ten weeks in. It's been around since
about twenty of has become much more popular, but UM
it has still not been cleared by the f d A,

(37:30):
and the f d A even this year said don't
just get that test, Like, if you want to get
that test, you can get that test, but UM, just
don't look at those results alone, right. And the reason
the FDA would say anything like that is because the
point to these tests for the vast majority of people
who get them are UM to determine whether they're going

(37:52):
to keep this pregnancy or not. UM. There's a lot
of concern among people who are UM part of the
Down syndrome community that there's not a concerted effort to
UM wipe out people with Down syndrome from the diversity

(38:13):
of you know, human types. Um. But that a million
different individual UM decisions, all going the same way, can
ultimately have the same effect. It really depends on where
you are in the world. Again, that so I think.
I call her Sophia Zang. I'm sorry, her name is

(38:34):
Sarah Zang. She wrote that article in The Atlantic. Um, yeah,
it was really wonderful. She um. I guess if an
article about UM accidentally eradicating Down syndrome people from Earth
could be wonderful, it definitely is. But um she uh.
She focused on Denmark, where there's something like I think

(38:55):
of UM people who come back with a screening that says, yes,
your baby is going to have Down Synemer has Down syndrome. Um,
they abort, They choose to abort the pregnancy. And I
think it's even higher in Iceland. I think it's approaching
a dent in Iceland, and as a result, the number
of people with Down syndrome being born there's plummeting in

(39:16):
I think two thousand and eighteen, Sarah Zang said in Denmark,
eighteen people were born in the whole country with Down syndrome.
Only seven of them were purposefully born. The other eleven
had gotten false negatives and had carried on with the
with the pregnancy, and you presume that some of them
probably would not have otherwise. I wonder, I don't know.

(39:40):
I wonder what it is about that part of the world.
I don't know, because if you read the article, she
really goes on about how that that country in Scandinavia,
I think in general, really kind of considers itself like
very diverse, um, culturally and very inclusive and they're not
like anti disabled, uh people or anything like that. But

(40:02):
when it comes down to it, it's like, yeah, those
individual decisions, very private decision. Um, can they add up
to that in in private and public? It's different? In
private it's a completely different different game apparently. Yeah. And
you know, we should also mention that when you get
these tests done and they come back, you have that

(40:23):
choice to make. But a lot of times it's also
like uh, preparing yourself, like, yeah, I'm gonna go through
with this pregnancy, and I want to know what to expect.
I want to prepare myself. I want to educate myself.
I want to um, you know, there's there's money involved,
which we're gonna talk about in a minute. So I
want to get my finances UM squared away, or make

(40:44):
sure I can have it squared away. I think the
I guess we should talk a little bit about some
of the statistics. UM. The abortion rate for Down syndrome
positive pregnancies UH is declining, you know, for sure. UM.
It's it's kind of tough in the US because they
don't have great stats apparently, but the CDC said between

(41:05):
seventy nine and two thousand three UH the number of
babies borns with babies born with Down syndrome increased by
over that time frame, and al analysis found that termination
rates for fetuses with Down syndrome was between UH sixty
seven and eight and was declining. Yes, and that's the

(41:26):
US only. It doesn't appear to be declining in some
of the Scandinavian countries for example. In other places in
the world, I think Japan and China also have really
high abortion rates for Down syndrome positive pregnancies. But the
U s um there's a few factors at play for
UM why they would be declining and the down syndrome
population would be increasing. UM. I think the national Down

(41:47):
syndrome society says about today about people with Down syndrome
are born each year, and there are, like I said,
a few reasons why it's increasing. One is just because
they've been brought of institutions and people have been able
to see like, oh, yeah, these are human beings. They're
different from me, but there's still human beings and they're

(42:08):
the same as me in a lot more ways than
I realized. And also again anecdotally, they're amazing people to write. Absolutely,
it's like, oh goodness, When I we just accept people
as people, then everything gets better. Right. So that was
that was just one factor. There's some others too. Uh yeah,
one of them. Well, one factor is Hispanic women are

(42:29):
much more likely to give birth regardless of whether or
not they have down uh syndrome, positive pregnancy happening right. Uh.
And then another factor that can be complicated is that
these screenings used to be something that you specifically request.
Now they're a little more standard, So that could just overall,

(42:51):
you know, if you're just gonna have more screenings, that
could increase the overall percentage of those positive results of
people who still continue with that pregnancy and increase the
total number of terminations, so I guess all the numbers
would be rising. Right. Also, the fact that people are
giving birth later on average is increasing the rate of
Down syndrome pregnancies to begin with, and that that means

(43:14):
that just by by definition, more Down syndrome people are
being born. So I think the number one factor is
um being able to take people with Down syndrome to
the park now has just changed everything. Yeah, Um, I
mentioned money, and there is you know, if there are
more medical complications on average, Uh, then there are going

(43:35):
to be more medical costs on average, and that is
definitely something that people need to think about. I think
among there's one study among children between birth and age
four that at private insurance, the average medical care costs
were about twelve times higher if you had Down syndrome.
And I think about families with a child with Down syndrome.

(44:00):
Um had a family member that stopped their job, that
stopped working to care for them full time, and about
also said it caused the financial strain on their family, right, Um,
And I mean there's plenty of other challenges as well. Um.
One of the things about people with Down syndrome is
that they age faster. Their bodies just age more quickly

(44:20):
than people without Down syndrome. UM statistic I saw is
that a person aged forty with Down syndrome, UH, their
bodies probably about five years older than their peers um
and in the general population. And then at sixty, their
bodies about twenty years older than the average sixty year
old in the general population. UM. And then one of

(44:42):
the things that I think really kind of looms like
a dark cloud over the Down syndrome community is that
there's a really good chance that they will develop Alzheimer's,
probably better than a fifty percent chance. I saw an
editorial in the Washington Post that said a ninety percent
chance either way. It's a really good likelihood that they're
going to develop Alzheimer's. It's a big problem in the

(45:04):
Down syndrome community. Yeah, you sent me that stuff, but
I didn't get a chance to look over the reasons why.
But they they've kind of think they've isolated why right, Yeah,
So that that twenty one chromosome, right, um, that you
they often have three copies of that third copy actually
boost production of what's called amloid beta, and amloid beta

(45:25):
is one of the things that's responsible for the creation
of plaques on the brain that leads to Alzheimer's. So
is another um substance called TAO, and people with Down
syndrome produce more of this stuff, so their brains age faster,
so they develop Alzheimer's at a much younger age, and
they're they're much more likely too, because they're overproducing these

(45:45):
proteins that create the plaque um and then also in UM.
The Down syndrome population, Alzheimer's starts to present differently. It's
not really memory loss or for forgetfulness that's like an
early signed. It's more and this is very said, reduced
interest in being sociable, conversing or expressing thoughts, and decreased
enthusiasm for usual activities. So there's a lot of people

(46:10):
who are like, Okay, well, we're starting to work on
Alzheimer's and testing new drugs, obviously we're going to include
people with Down syndrome in those tests. And that is
absolutely not true. As a matter of fact, there was
a test that the FDA explicitly excluded people with Down
syndrome from for testing in Alzheimer's drug yes, and so

(46:31):
there's there's a real movement to like start to include
people with Down syndrome in these clinical trials, and it
seems to be starting to to gain some traction. But
it's just completely insensible to to just exclude the group
that I guess, on average has the highest likelihood of
developing Alzheimer's of any other human group around. Yeah. So

(46:56):
it's funny. When I was reading this stuff that Livia
sent us, was getting um a little frustrated with like
this study says this, and you know, we talked to
parents that said this, and I was like, well, you know,
has someone talked to people with Down syndrome and about
how they feel? And good news is Livia held it

(47:17):
till the end, and they've done just that uh many times.
In fact, that was she found one study in two
thousand eleven, and this is of kids twelve and older
with Down syndrome, and of them said they were happy
with their lives. Uh. Seven percent said they liked who
they were, uh, said they like how they look, said

(47:38):
they love their family, and eight six percent said they
could make friends easily. And then they asked it some
sort of open didded questions just to get like, you know,
real world answers, and uh, you know, most of these
kids did express some frustrations with their condition. Um, but
it was parts of their condition and not their lives

(48:00):
and not like this is my life is just so
frustrating as is like this one part of my life
is frustrating. And obviously a lot of this stuff in
high school and like in puberty, they found that, you know,
there were more reports of kids being sad who had
Down syndrome and not adjusting as well. And you know
that's that's called puberty and being in high school and

(48:22):
it's uh, probably especially rough if you have Down syndrome,
but those are the changes that are going on with
every kid, and so it may be a little more
pronounced at that age. Yeah. And this, um, this is
a really good study to skim. It's called Self Perceptions
from People with Down Syndrome. It was led by Brian Skoto,
was from two thousand eleven. It's available for free online

(48:43):
and it has just it's just chock full of quotes
from the study. And he even says that they conducted
the study because so many people are being presented with
all of the downsides of Down syndrome when they're told
that their child has Down syndrome, and do they want
to keep the pregnancy, and he's like, we need to
get other data that shows the full picture out there
to people too. That's why he conducted this. But it's

(49:06):
a really great study to read. And one of the
things that it kind of points out without overtly pointing out,
is that people at Down syndrome generally are aware that
they have Down syndrome, that they're different in some way,
and yet despite that, this study shows that they're way
happier on on this self first self reported study granted

(49:28):
than the average person UM twelve and older in the
general population. Yeah, it's it's a really and you know,
I hate that we saved this stuff to the end,
but it's kind of a nice way to leave things.
I think for sure. I want to shout out to
other amazing well three other amazing people, um well four, five, five,
But in three groups you're always in there. Um. One

(49:52):
is Paul and Chris Sharoon Deforge. I believe when Paul
died they both had Down syndrome. They both they have
been married for twenty five years. Pretty amazing. Um. There
was a woman named Lisa White who was fifty back
in two thousand sixteen. She had Down syndrome. It still

(50:12):
doesn't believe she's around. But one of the things that
was so amazing about two thousand six teams that Lisa
turned fifty and her son Nick, her son Nick, who
also has Down syndrome, turned twenty. That is really rare
in the community. But it also shows like this woman
has Down syndrome and she raised a child and she
was living independently. Also, yeah, uh, we can also shout

(50:34):
out people like Sujiete de Sai, who was the first
musician with Down syndrome to play at Carnegie Hall, has
played in all fifty states thirteen countries. Uh, if you
saw the great movie the Peanut Butter Falcon, really good
movie is that I haven't seen. Yeah, it's really good.
Has Shyla buff in it. But zach Um gotts again.

(50:55):
I think his house pronounces the actor. He's been in
a bunch of stuff. But Peanut Butter fact and was
certainly the highest profile movie and it's a really, really good,
good flick. Okay, I'm gonna check it out. I mean,
there's special Olympians who are on the national team, UM
runaway models. Um arguably the famous person, the most famous
person with Down syndrome, Chris Burke who played Quirky on

(51:17):
Life goes On. Gotta shout out Chris Burke for sure.
Chris Burke, who played Quirky. Life Goes On was a
very big show and a big deal as far as
raising awareness, Like it seems like it just a sort
of a trite thing to shout out the guy who
played Quirky, but that show was. It was a game changer,
and not only with just Down syndrome, but just awareness

(51:38):
in how people viewed a lot of different kinds of disabilities.
So he's worked with the National Down Syndrome Society h
for a long time and it's just a great ambassador
for that group and speaking you gotta shout out. I
also want to shout out Kayala McKeon, who manages grassroots
advocacy for the National Down Syndrome Society. She also has

(51:59):
Down syndrome herself. She was also the first registered lobbyists
in America with Down syndrome. And we met her Chuck,
because she came to our Atlanta show, Um where um,
we had the National Down Syndrome Society come and then um,
what was the name of the animal charity that you supported? Oh?
The local one? Yeah, Uh lifeline, Lifeline. That's right, That's

(52:21):
what I was gonna say. So, UM, Kayla as a
very cool person who is still at it from what
I can tell, So shout out Kayla and everybody at
the n d SS. Awesome. And then we have one
more thing we just have to cover too. We can't
not mention it. That article from UM I think New
Scientists that there's a study that was carried out and

(52:41):
it was just among seven adult men with Down syndrome
over six months, but they gave them uh pulses of
geneta trope and releasing hormone g n r H and
it improved their cognitive function over six months. That's like
going from a thousand to add on the old school

(53:03):
s a t that actually tested cognitive ability. Yeah. Yeah,
when you put in that perspective, it's nuts giving them
one hormone. And again that's what actually increases and gets
triggered when puberty hits, which also coincides with the decline
and cognitive ability among Down syndrome people. So they may
have figured out something really big, not just for Down

(53:24):
syndrome people, but for Alzheimer's as well. We gotta shout
out one more thing Okay, now where were running long?
But our very own Jerry sent this to us. Uh.
Although it's called Jerry's Habima Theater h A B I
m A uh, it is not our Jerry's Theater, just
strictly coincidence. And I didn't know about this. This is

(53:44):
in Atlanta. It's on tilly Mill Road, and it is
a professional, uh theater company of actors and they all
have special needs. And apparently there is a show that
goes on I think it's this in March every year.
It's coming up March nine through to save the date

(54:06):
for Cinderella, and tickets go on sale in January. And
this is an all inclusive theater company that puts on
these plays and it's looks like a wonderful thing. I
think Jerry said that she had been and it's like
one of the most fun best things uh and as
well as being supportive, but just a really fun thing

(54:27):
to do. So go check out Jerry's Habima Theater. Okay,
I'm out of stuff for now. I got I mean,
we could plug people all day, but I'm out of
stuff too. Okay, if you want to know more about
down syndrome, that's really something that you should go out
and learn more about and while you're doing that, in
the meantime, I say it's time for listener mail. I'm

(54:51):
going to call this UH pretty quick follow up from Fundamentalism.
It was released today and as it happens, we start
getting emails minutes after release, usually about forty five minutes after,
although sometimes people jump the gun and email us during
an episode. Hey guys, thanks for the recent episode on fundamentalism.
You put into words exactly what I've been going through

(55:12):
for the past couple of years. I come from a
very fundamentalist Catholic family and have been dealing with all
the joy that comes from expressing a different viewpoint. My
wife and I are both atheists, and this has been
a point of contention with my family never since we
have decided to have a non religious wedding. UH. The
tension is only increased since we have welcomed our daughter
into the world and had to deal with my family's

(55:32):
push to baptizer. The episode on fundamentalism is some very
good points and definitely allowed me to look at the
situation in a different light. The issue is closed mindedness
and not necessarily religion. Appreciate all you guys do all
the best that is from Jake. Awesome, thank you for that.
I can imagine that their wedding someone said God bless

(55:55):
you two, and they were like, get out. You know,
I'll take a guy bless you. I don't mind it.
Uh when you sneeze her anytime. Anytime, if someone uh,
I don't know, if my grocery store check her outer
just says God bless you have a blessed day, I
just say, you know what, thanks very much, because that's
that's a kindness that they're bestowing upon me in their

(56:16):
own way. Oh yeah, I'm like, you've never heard of
separation of church in public. You're fired as you're smashing
a sheet cake into your mouth. That's exactly right, because
those things don't make it out the door. Well, thanks
a lot for sending us that email, Jake, And if

(56:36):
you want to be like Jake, then you can send
us an email to uh stuff podcast at iHeart radio
dot com. Stuff you Should Know is a production of
I Heart Radio. For more podcasts my heart Radio, visit
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