May 13, 2024 • 56 mins
In this profound episode of 'Now You Know One Autistic! Podcast,' hosts Moshe and Leah delve into the intricate world of genetic testing for Autism Spectrum Disorder (ASD), sharing their personal journey and insights. They explore the science behind genetic testing, its benefits, and limitations, particularly focusing on their Ashkenazi Jew lineage's impact on ASD.
The discussion extends to the ethical considerations surrounding genetic testing for autism, including the contentious issue of eugenics. Moshe and Leah explain the critical differences between monogenic and polygenic gene changes and how these contribute to complex disorders like autism.
Highlighting scientific advancements in early autism detection, the hosts debunk myths about autism's causes, emphasizing its genetic roots. They also tackle the ethical implications of gene selection and manipulation, sharing their perspective on the value of all life, regardless of ASD.
Join Moshe and Leah as they dispel myths and illuminate the genetic aspects of autism from a deeply personal viewpoint. Engage with their online community to shape future content and support individuals with ASD through knowledge and understanding.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Moshe (00:11):
Hi, I'm Moshe, and I'm autistic.
Leah (00:14):
I'm Leah, and I'm boring.
Moshe (00:16):
Welcome to now you know one autistic.
Leah (00:18):
A podcast about neurodiversity in couples, marriage meltdowns, and making it all
work.
Moshe (00:23):
The opinions expressed in this podcast reflect the experience of one couple and one
autistic.
Leah (00:28):
Nothing that you hear in this podcast should be taken as a medical opinion.
And unless otherwise stated, no one is anaccredited specialist in any of the many
fields that comprise the autism spectrum.
Moshe (00:39):
But as someone who is on the autism spectrum, I feel that my experiences will be
very valuable to many of you.
Whether you're on the spectrum, a support
person like Leah, or just a curious bystander.
Leah (00:51):
If you think that you or someone you care about may be autistic, consult your
family doctor.
Hi, Moshe.
Hi, Leah.
How are you today?
Moshe (01:06):
I'm great.
How are you?
Leah (01:08):
I'm right.
So we're going to be doing an episode about
something that we actually went throughrecently and how we feel about it.
So what we're talking about is genetic testingfor autism spectrum disorder and related
disorders, and genetic testing, pre pregnancyand pre IVF in general, I suppose, will be one
(01:31):
of those things as well.
Before we get into the meat of our experience,
which was interesting.
It wasn't bad, but it was up and down.
We're going to talk about genetic testing ingeneral and genetic testing for ASD, just so
people have an idea of what it is.
Before we get into when we had to sit down
with a genetic counselor and how that wastraumatizing.
Moshe (01:53):
Right.
Genetic testing is something that, I mean,
unless you know that you have a specificcondition or you know that your family has a
specific condition, it really only comes upwhen you are trying to have a baby, because
when you are with a partner and you decide todo the thing where you sort of combine your
(02:16):
DNA, that's generally how babies happen.
Leah (02:20):
Did you know?
Moshe (02:21):
I did know.
I have a sneaking suspicion.
I just really like your smile, so the rest isjust kind of a bonus.
But the genetic testing thing often comes upin the case of trying to have a baby, because
the question that a lot of the people ask is,do you know if you have a family history of
(02:44):
this or if you have a family history of that?Leah and I are both Ashkenazi Jews on our
mother's side.
So with our particular line, there's
definitely a higher instance of certaingenetic conditions.
But it's really only in the case of people whohave, like, two parents who are Ashkenazi
(03:05):
Jews, which we don't.
Leah (03:08):
So when you're trying to have a baby, what they'll generally do is they'll test mom
for all kinds of stuff.
Right?
So they tested me for the Ashkenazi Jewdiseases.
You know, one very prominent one, or used tobe prominent, is tay sachs, which they always
check Ashkenazi juice for before they havebabies, or they try to.
They tested me for, you know, geneticmutations that cause breast cancer and
(03:35):
cervical.
Or was it ovarian cancer?
Moshe (03:37):
Ovarian cancer.
Leah (03:38):
I don't have those.
They suspect you have it on your side, but
they haven't checked you because, well, thelack of ovaries, it would.
Moshe (03:44):
Really only be girls that, I mean.
Leah (03:48):
You can carry the jeans.
Moshe (03:49):
You can.
But if you have a daughter, they could.
It could be affected by it, or if you have ason, who in turn has a daughter.
So if you have a granddaughter, they couldcarry the gene, because, of course, the boy
would pass it along to another boy, who wouldpass it along to a girl.
And you could be wondering, why am I at ahigher instance of not just ovarian cancer,
(04:10):
but anything?And then they can trace the line back.
Leah (04:13):
The reason we're saying that is because Moshe's mother, who we love very much, passed
away from ovarian cancer.
So it might be on his side, but his sister
doesn't have it.
So anyway, they didn't find it worth testing
him for.
So what they'll generally do is test mom,
which they did a battery of tests on me.
Those were the two that I can think of right
now.
But they did also the general ones, you know,
(04:35):
trisomy, which is for down syndrome, and spinabifida.
Not spina bifida, but muscular dystrophy.
Sorry.
Spina bifida is not genetic.
It's a malformation.
Moshe (04:46):
Folic acid.
Folic acid.
Leah (04:47):
Folic acid.
So they did, you know, all that stuff, they
looked for proteins in my blood cells and allthat other stuff.
They didn't find it necessary to test moshefor anything.
But they were very interested in his autismand adhd diagnoses.
And the third thing that can happen is whenyou either have an embryo or a baby, they can
(05:08):
test the embryo or baby as well.
We don't have either of those at the moment.
I mean, we have older babies.
And Riah has had genetic testing for other
things.
So that is how that generally will go.
So I've had a battery genetic test at thispoint, can genetic testing, or, sorry, it's
(05:31):
done through blood, by the way, just for thosewho really have no idea.
They draw a whole bunch of blood, and theylook at your DNA or specific parts of your DNA
that they know cause certain disorders.
Moshe (05:42):
There are genetic testing that they do through saliva or through a cheek swab.
You might have seen the commercials for, like,23 andme and ancestry.com dot.
Leah (05:52):
I get ancestry.
Moshe (05:53):
And that does some testing of genetics.
But the really conclusive, like, targeted
genetic testing does have to be through bloodtests, because you.
You can tell, for example, by testingsomebody's genetics through, like, a cheek
swab, their matrilineal line, theirpatrilineal line, if they're a high instance
(06:17):
for having wet earwax or, like, unnecessarybut interesting how much Neanderthal.
How much Neanderthal you are.
That was going to say that one.
Like, if you're related to Genghis khan orsomething, but not.
But if you want to know, like, if your childor if you yourself carry genes, blood tests
are really the way to go.
Just to be sure.
Leah (06:37):
I did the ancestry.
It showed literally 50% to 51% Ashkenazi and a
bunch of other stuff.
So, you know, french and italian and other
things.
I was curious about the other parts that I
knew.
So that was just for fun, though.
That doesn't really diagnose anything.
Moshe (06:54):
Yeah, I mean, if you're into genealogy or whatever, it's kind of nice to see where
you come from.
Or if you're adopted and you don't really know
your birth parents, you might want to trackthem down.
Or if you are, you know, if you're looking forrelatives, you can pay some money and stick a
swab inside your cheek and send it to a bunchof people in a lab, and they can find your
(07:17):
fifth cousin, once removed, who lives in somecountry, introduces you to a great, great,
great grand relative that you never knewexisted.
Leah (07:25):
So we're kind of rambling.
I just want to verify.
So Moshe and I have both done the 23 andme andthe ancestry for fun.
That doesn't diagnose anything.
Moshe (07:32):
Yes. So the actual instance is sort of getting back on topic.
We engaged in genetic testing because we'relooking to increase our family.
And, of course, Leah and I want to get thetesting done to.
Well, let's backpedal that.
We didn't actually want to get the testing
done.
It was.
We were asked to get it done by the peoplethat we were Israel.
Leah (07:54):
That's kind of required because we're of a certain age.
Yeah.
Moshe (07:58):
Leah's a little bit on the older side.
Still gorgeous, like.
Like a fine wine.
Leah (08:04):
Thank you.
Moshe (08:05):
And I am like a different kind of wine.
Anyway, the wine analogy doesn't work.
But the point is, because of our age, whichisn't that big a deal in Israel, because
people continue to have children until they'rephysically not able to.
Leah (08:18):
But they like to do tests.
Moshe (08:20):
They want to know, just so you know, what the chances are.
And of course, they test for a variety ofgenetic conditions, or what they suspect are
conditions that have genetic links.
Which brings us to the topic of the episode
today.
Leah (08:36):
Right.
So that is the medical testing that we've
done, mostly me.
So I had nine or ten vials of blood taken, and
that is more of a diagnostic thing in terms ofthat.
So if mom has issues, then they'll check dad.
If dad and mom have issues, then they'll check
baby or fetus or embryo or zygote.
Moshe (08:57):
And we had some conversations which we'll get into.
Leah (09:00):
We'll get into it.
So my first question to you, Moshe, is can
genetic testing diagnose ASD?
Moshe (09:08):
The answer to that question is possibly.
Leah (09:11):
So the answer to that question from my research is probably not.
Yes, at best.
Moshe (09:18):
Sometimes they can detect some genetic links that might lead to a higher instance of
people developing ASD, but they can'tdefinitively state this gene here causes
autism.
Leah (09:34):
So they will never actually diagnose autism based on their genetic or blood tests,
ever.
Not without it being in conjunction with the
formal testing which you and Avram have bothhad.
Right.
So the 802 that you filled out and the other
diagnostic tests that you filled out and thetests for ADHD and stuff, which are written
tests which you're supposed to do partially onyour own, partially with your partner or
(09:55):
parent if you have one.
Because sometimes we're not the best at
knowing how we actually act or feel aboutthings.
Moshe (10:01):
Autism is weird, though, because unlike some other genetic conditions, because if a
child is in utero or a child is newly born ora child is developing, you can look at them
sometimes and go, well, that baby has trisomy,that baby has this, that baby has something.
(10:25):
There's definitely something going on withthat baby.
But autism is one of those conditions thatthey label as invisible in that you could look
at a baby and you can't definitively look atthe baby and go, you see right there, that
autism right there.
Leah (10:39):
So that's why essentially, you need the written tests combined with somebody actually
observing you.
So somebody who's trained in this.
Right?So either a neurologist or psychologist or a
psychiatrist or a therapist, or in the case ofAvram, a developmental pediatrician which is
an extremely specialized specialty, and theywill diagnose you with autism spectrum
(11:02):
disorder and often ADHD as well.
And then they can investigate genetic reasons.
But our question ultimately is why?Because once you've been diagnosed with
autism, they're sort of very early on in termsof defining which genes actually might cause
(11:25):
autism.
And even if you find them, it's not going to
improve your quality of life, your treatment,or find a cure.
So ultimately, we feel like the geneticinvestigation of autism is essentially for the
curiosity of the scientists who are doing it.
Moshe (11:41):
And there's a few things that we saw or read about in terms of some of the testing
that was done and the reasons behind it.
Leah (11:51):
There are some useful ones.
So if they can diagnose a syndrome that has
ASD as one of the symptoms, then it canabsolutely help the treatment of that person,
because those often come with other healthproblems.
Right?So, like heart problems or, you know, walking
problems or whatever.
So there are a few syndromes that tend to have
(12:12):
ASD as a symptom or a much higher level of ASDwithin them, and those can be determined
genetically.
But just for your garden variety ASD, I don't
know.
We're not so sure how we feel about that.
Moshe (12:24):
Yes, because ASD is interesting in that it's a condition, or if you use the actual
term, it's a disorder, but it's also a symptomof other disorders.
Or like Leah says, it's a. There's certainother syndromes, genetically caused syndromes
(12:48):
that allow a person to have a very high oralmost, you know, inevitable diagnosis of
autism.
And if you can identify autism from a genetic
component, and you know that this child hasthis syndrome, which also comes with physical
things or predispositions for kidney issues orheart issues or digestive issues, and you can
(13:09):
go, okay, then.
Leah (13:10):
You can test the heart and the kidneys.
Moshe (13:12):
That kid is autistic.
But also they have this, which means we have
to check these things, which.
Leah (13:16):
Is the only reason we honestly found, after really looking into it, that we thought
was even somewhat necessary for genetictesting for ASD.
Another reason why we find it so unnecessaryis because there are currently 1000 single
genes and 17 genetic regions.
(13:36):
So when you talk about genetic regions, I
believe they're talking about, help me here,not genes, but chromosomes.
They're talking about chromosomes that havebeen associated with ASD.
Therefore, if you can find a thousand ofsomething that may or may not cause something,
is it actually really that useful to you?
Moshe (14:00):
It's really one of those instances going back to the analogy of ancestry.com,
where you run your genetics through theirfilter and you go, well, this particular
person has, you know, a certain percentile ofshared chromosomes or genes or whatever with
(14:23):
you.
So it's quite likely that they're a cousin of
yours.
And your answer to that would be, oh,
interesting.
And then that's really, that's really
inaccurate.
Leah (14:33):
Because I have an aunt who I know is my aunt, right.
And genetically they said she is a closerelative of yours.
She might be your aunt, your sister, or yourmother.
Moshe (14:41):
Right.
Leah (14:41):
So it's.
It's. It's not like a targeted thing, the way
people think or the way they show it in themovies.
Moshe (14:47):
It's kind of like a shotgun versus a laser.
You kind of have a whole range of potentialsversus a. This is 100% unreservedly the case.
Leah (14:58):
So as of 2022, only three to 40% of people will get a genetic diagnosis.
So they've already done the eight O's, two.
They've already done, you know, being seen by
a neurologist.
They've already gotten that diagnosis on
paper, and then they'll look at their genes,and only three to 40% of those people will
they find a genetic diagnosis.
Moshe (15:18):
Right.
Leah (15:19):
Now, does that mean they don't have a genetic predisposition?
No. What it means is that currently geneticsis very limited.
They don't actually know what they're lookingfor.
So if you don't look at the part of the genesor the chromosomes that are causing the
issues, then you're not going to see it.
So it's going to come up as a non test or a
(15:40):
negative test.
It doesn't mean it's not there.
It just means they can't find it or they don'tknow what they're looking for.
Right.
Moshe (15:45):
And that's why we actually saw a video that said that if you don't get a diagnosis of
a genetic, genetic autism, then you actuallycan come back in a few years and test again.
Because they are still so early in the stagesof identifying genetic links to autism that
(16:06):
constantly new research is being.
Is being reached.
And today they might say, you don't have agenetic link to autism, but then in ten years
they might go, oh, see, that gene is what wenow know causes, you know, causes autism, but
it's not there.
Leah (16:22):
So you're.
Moshe (16:22):
It's. It's, for lack of a better term, a **** shoot, because you never know if the,
the negative you're getting is a definitive noor if it's a not right now type of thing.
Leah (16:32):
Exactly.
Either way, it's not a no, because if a
psychiatrist has diagnosed you with ASD, youhave ASD.
If you meet the criteria, you have it,regardless of whether your genes say you do or
not.
Moshe (16:42):
And that is essentially what they told me because I have a formal diagnosis of
autism, of ASD and ADHD.
And then when we start talking about genetic
testing, it was like, okay, so you have yourdiagnosis.
That's wonderful.
You should probably also investigate your
genetic links that might have caused yourautism.
(17:04):
And we had a discussion about it, and again,it really came back to the question of why,
what's the point?
Leah (17:10):
And the answer.
So geneticists don't like to say this, okay?
They will sit with you and they will say,well, it's for your health.
It's to make sure for your general health,it's to see for the health of your offspring.
It's to see family stuff.
And then eventually they'll start using terms
like family planning.
And then eventually, if you push them enough,
they will tell you, so that you could excludeembryos or so that you could decide whether
(17:35):
you really want to mix those genetics togetherto see, you know, if the baby is going to be
functional, you know, healthy.
They like to use the word healthy.
If the baby is going to be.
Moshe (17:45):
Healthy, if you can, if you're fortunate enough to be fertile, then you can
essentially do the things that, you know, menand women do to get pregnant.
And then the baby comes out and it's there.
There's not a whole lot you can do about it.
But if you're going through more designermethods like IVF or other things, then you're
(18:09):
essentially taking a natural process andmaking it into a moral debate.
Because what they're really asking you is ifyou're going through IVF and you are creating
a certain number of viable embryos and they'rejust sitting there, do you want us to have the
(18:32):
ability to look at them and go, well, that onedoesn't have a genetic predisposition for
autism.
That one does.
So we're going to take the one that doesn'tbecause you don't want to give that
opportunity to your child.
Leah (18:45):
So essentially, what they're talking about, and that's eugenics, ultimately, is
eugenics.
Moshe (18:49):
That's all it is.
Leah (18:50):
And that's the only reason other than the, you know, syndromatic with other health
problems that we could see that people wouldwant to do genetic testing for ASD or ADHD or
any non life threatening difference that theywould want to weed out of their family and
there are people who absolutely would want todo that.
And I have opinions, but I'm not going to passmoral judgment.
Moshe (19:14):
And I mean, I have opinions, too, and I can speak from first hand.
Leah (19:17):
Experience, but I mean, we're jews.
We know what eugenics is.
Moshe (19:20):
Yes, unfortunately, eugenics is something that the jewish people throughout
history have a very long and bad history withbecause it's something that happened.
And, you know, anyway, we're not going to getinto it because this is a podcast about
neurodivergency, not, you know, genetics, butessentially look up, you know, Doctor Mengele
(19:42):
and the people who conducted.
Leah (19:44):
Doctor Asperger.
Moshe (19:46):
Yes, Doctor Asperger.
People who essentially, their job was to
either try to find what makes a person fit andwhat makes a person unfit and then what to do
with the ones who are unfit.
And that is, unfortunately, something that's
still happening today.
(20:06):
Because if you.
And again, this is a podcast about autism andemergency.
It's not a podcast about religion.
But if you are the kind of person who
believes.
I don't want to get into pro choice or pro
life, but if you're the kind of person thatbelieves that a child is a child is a child,
(20:27):
then you have to decide if you're comfortablewith, you know, that kind of tinkering with
essentially what amounts to God.
And that is not something that everyone is
going to want to do and not something that,honestly, I feel should be available if
there's a chance.
Because, and again, this is a slippery slope,
(20:50):
and I'm trying very hard not to get into it.
But if you are looking for a predisposition
genetically for something that will cause thechild immeasurable pain, reduces lifespan,
cause them constant health issues like taySachs.
Leah (21:03):
That's why we test for that, then.
Moshe (21:05):
You'Re going to go, you know what? I get it.
But also, I would rather have a child that Ican, you know, who's going to live a healthy,
hopefully long life versus a child, you know,that I'm going to take a chance that.
That I'm going to have a child that may end uphaving a life of pain and suffering and
drastically reduced.
But autism is not like that.
I'm autistic.
(21:26):
Avram is autistic.
There are many autistics out there, except forbeing somewhat, you know, I don't know, they
have some.
Some processing issues, but it's not fatal.
It's not causing them pain.
It's not causing them to be, you know,
challenged in some way.
And when you have a child, any child, you
(21:50):
don't know, if that child's gonna sleepthrough the night, it's gonna have digestive
issues, it's gonna be lactose intolerant, it'sgonna have colic, is going to have frequent
ear infections, it's going to have asthma, isgoing to have any number of conditions.
So you're just basically, if you want to goalong the idea of creating a superman or
(22:12):
superwoman kind of child, then what's thepoint anymore?
Leah (22:16):
I mean, I have a very strong genetic predisposition to asthma.
My mother's asthmatic.
I'm asthmatic, right?
Our daughter's asthmatic.
Moshe could look at me and say, do I really
want those asthma genes in my baby?And that's kind of where we feel that we're at
in terms of the autism genes?Well, yes, it definitely causes people to have
(22:37):
a harder life.
Yes, it definitely causes.
I'm not minimizing the struggles of peoplewith autism.
Please don't take it that way.
But is it worthy of saying this person doesn't
deserve to exist?I mean, I would ask an autistic, ask any
autistic, do you like your life?Are you happy that you're alive?
And someone say no, but a lot would say yes.
Moshe (22:57):
Unfortunately, people with autism are at a higher instance of mental illness and
suicide.
But I think that has far more to do with a
lack of support versus a constant struggle.
There was an article in the paper in Canada
not too long ago about a woman who was tryingto do the medical assistance and dying program
(23:20):
because she was autistic.
And it really kind of horrified us because to
my understanding, again, I'm autistic, my sonis autistic.
And sometimes it's difficult.
Sometimes it's hard.
Sometimes, you know, it's challenging.
But would you, is autism something that you
(23:40):
would be willing to look at a child and go,you don't deserve to live because you might be
autistic?I would argue no. And for me, I believe that I
am in a position to make that call, because,again, I am autistic.
And I would very much like to have beenallowed to continue to live if my mother had
(24:02):
been given the choice.
So I am not a mistake.
I am not an accident.
I am not an error.
I am a human being.
And while I do have my own challenges and my
own difficulties, I have a lot to contribute,and I believe that my life is valuable.
And the life of any child who has the chanceof developing autism is just as valuable.
(24:26):
We are not trying to create a super race.
We're just trying to have a family, right?
And that's really what this is about.
Leah (24:33):
With all the diversity and challenges that come with that, because every human being
is born diverse.
That's what sexual reproduction does, right,
versus, you know, cloning or whatever.
And everyone has their own challenges in life.
Moshe (24:47):
Everyone does.
If your skin is a little bit lighter, you
can't be in the sun as much if your eyes areblue, if you have a predisposition for.
Leah (24:56):
I like Moshe's blue eyes, but I'm not going to choose our child's eye color.
Moshe (25:00):
Diabetes, like, there's a lot of variables that a child could develop and you
could go through all the testing and try andtheoretically weed out every little thing that
they have the ability to test, and then boom,there's like something else that they didn't
expect that comes up anyway.
Leah (25:13):
But how many things do they not have the ability to test?
If you talk to, again, an honest geneticist,they will tell you there are so many things
they don't have the ability to test becausethey haven't studied it yet, because they
haven't found it yet, because they don't knowexactly.
The human genome is huge.
Moshe (25:27):
It really is.
Leah (25:29):
Speaking of which, speaking of mistakes and spelling errors in the genome, let's get
back to genetics.
So there are two types of changes that you
could see in some of these genes.
So basically, against the expense, one is
called monogenic and the other is calledpolygenic.
Now, mono means one, poly means money, justfor those of you who are out there.
(25:50):
So monogenic changes means that there is onechange in the genes, right?
So one gene is off, it's knocked over, it'smisspelled, it's the wrong letter, and then
it'll maybe knock over another gene furtherdown the line and cause some sort of a
diagnosis.
So, you know, a syndrome or an issue like
asthma, like I have, or an issue like cancer,for example.
(26:15):
And then there are polygenic changes, whichare multiple but subtle changes in many, many
genes that will cause a very complex disorderlike autism.
And they just don't really have thetechnology, truthfully, to look in detail at
all of those little changes.
(26:35):
So it may be the way genes work right there.
They're lettered and you expect, you know, ana to be here, a g to be there, a t to be
there.
And it may look like you're agtagt, and then
suddenly there's another t there somewhere,and you have many of those in a line, and it
could cause nothing or it could cause autism,or it could cause.
(26:58):
I don't know, skin rashes, I don't know.
It could cause anything.
Moshe (27:02):
Right.
There's certain genetics that are very clear.
Leah (27:06):
The ability to do that reliably, or they do, but it costs a lot of money.
And then you're looking at every single gene.
And even then, if they don't know what that
gene does, turned on or turned off, you'regoing to have to go back in a few years
anyway, once they've done more research.
Moshe (27:21):
Exactly.
Certain things are very easy to detect.
Certain things are not.
Certain things are detected very simply
through pure genetics.
The reason that down syndrome.
Down syndrome is a chromosome.
It is.
Leah (27:35):
Chromosomes are the big parts, right?
Moshe (27:37):
So you get a certain number of chromosomes from your mother and a certain
number from your father.
Leah (27:41):
I think they have an extra.
Moshe (27:43):
Now, what down syndrome is, down syndrome's actual scientific name is trisomy
21, because on the 21st pair, there is threegenes instead of two.
Leah (27:55):
So they have 24.
Moshe (27:56):
They have 24 genes instead of 23.
Again, 23.
Andme is not called 23 me because it's a luckynumber.
That's literally what you have.
And on the 21st, whatever you want to call it,
there's a third when there should only be two.
And that is what causes.
Leah (28:15):
So one for mom, one from dad, and a random.
Moshe (28:17):
And then just like a random anomaly, they have an extra chromosome, and it is a
very clear link.
Like, you could do a panel and go, there it is
right there.
Leah (28:29):
And it's very easy to see because it's on the chromosomal level, which is not the
individual genes, but it's sort.
Moshe (28:35):
Of the whole big picture and something like fragile x, you could look at the X
chromosome and see that little piece and go,that's fragile x.
Leah (28:43):
We're going to talk about fragile x.
Moshe (28:44):
But autism, there's no.
Leah (28:46):
You can't.
Moshe (28:46):
You could look at all the genes and you can't, like, look and go, oh, well, see there,
right there is on that thing that means thatautism.
Leah (28:53):
Individual lettering within the chromosomes, and it's very complex.
Moshe (28:57):
It's. They discussed it in the video.
It's like looking at a book, and you have to
basically open the book and go through everyrecipe and find a spelling mistake in one
recipe of one ingredient and go, see, that iswhat's causing this.
Leah (29:16):
And in reality, our scientific ability is more like looking at all the recipes and
seeing whether or not they're cookies.
Moshe (29:22):
Right.
Leah (29:23):
But looking for spelling mistakes in the individual ingredients is.
It's very involved.
It's possible, but it's very involved.
Moshe (29:30):
And if you're looking at the 21st shelf, and you go, there's three books there,
and there should be two.
Leah (29:33):
That's easy.
Moshe (29:34):
You can just look at it.
You don't even have to do anything else.
But with autism or with the potential forautism as well as other syndromes or
disorders, you really have to go down, downdeep to the.
Like, the actual letters and go, there's an athere, and it should be a g, or whatever it
is.
I'm not a geneticist.
Leah (29:52):
And even then, they don't know what that means because they haven't studied it.
Moshe (29:55):
That could be a thing.
Leah (29:56):
You're like, there's a g there, but.
Moshe (29:57):
We don't know what that does because the truth is, and again, not trying to get
into religion here, but the fact that a humanbeing is created the way they are is super
scientific.
Leah (30:10):
It is.
Moshe (30:10):
It is.
It is, frankly, amazing.
And the truth is that every single person onearth has something a little bit off because
you can't create that much complexity and not,like, accidentally.
Like, there's a thing there that should bethis nothing.
It could be a nothing.
(30:31):
It could be, you know, a little thing that
adds an extra freckle to your skin or, like, astreak of white in your hair that they don't
know why it happened.
Like, it could just be something so minute, so
minor that, well, there's a genetic error.
That genetic error makes, you know, my nails
grow longer than normal, but that geneticerror makes my brain not work.
Leah (30:54):
Like you're getting into Darwinism and the survival of the fittest.
Right?Genetic errors are what cause evolution.
Moshe (31:00):
Exactly.
Leah (31:00):
It's just that they're beneficial genetic errors.
Moshe (31:02):
Some are, some aren't.
And again, that's like, there's lots of
podcasts about evolution and darwinism.
Leah (31:10):
But, yeah, so that is where we're going, is really, again, science.
When you see it on tv, when you see it in thecrime dramas, when you see it in the medical
dramas, it makes it look like we reallyunderstand more than we do.
But our ability to really understand geneticson that level is quite limited.
Moshe (31:31):
It really is.
We are in 2024 at the time of this recording,
5783, if you follow the.
But we are still.
So we are still, like.
So we're in the dark in the beginning stages.
There was a. There was an article that I readin the science journal, actually, this morning
(31:53):
while we were waiting for the bus, and it saidsomething to the effect that they took a
square millimeter of the human brain and triedto map it, and they discovered that the amount
of data that fits in that square millimeter isin the trillions upon trillions.
(32:16):
And that if they actually converted the humanbrain to an inorganic data like field, it
would take, I think, something like 147 acresworth of computers to fill that amount of
data.
Leah (32:33):
And then people are complaining because your processor is a little slow.
Moshe (32:37):
Exactly.
Leah (32:37):
It's crazy.
Moshe (32:38):
The human brain, the square millimeter.
A square millimeter of the human brain holds
more data than any computer that exists today.
Leah (32:47):
And it would have to.
It would, because you live for 100 years,
maybe, if you're lucky, and you have toprocess all those memories, all that
information, everything you've learned,languages, you know, people, names, dates,
anyway.
You know.
You know what I'm saying?So one of the things that the geneticists in
the video that we watched discussed was onebenefit of getting genetic testing, they say,
(33:12):
is so that the parents of children with ASDdon't feel guilty about giving them ASD.
So essentially, it says, it's not your faultthat your child has ASD.
It's their genes, or so that they can pin iton the dad instead of the mom, or the mom
instead of the dad.
Or it's nobody, or it's a grandma.
So what were our thoughts on that, Moshe?
Moshe (33:32):
I feel like science is such an important field, and specifically the field of
genetic research, when it comes to discoveringcures for diseases and discovering causes for
conditions, are so important to the future ofmedicine and science and chemistry and all
that stuff.
(33:53):
I don't know that relieving guilt is a worthy
endeavor.
Leah (33:56):
I don't.
Okay, so I produced a child with significant
challenges for autism, and I don't know thatI've ever, like, woken up in the morning and
gone, I feel so guilty about that.
I don't understand the concept.
Moshe (34:10):
Okay, so.
And again, this is a bit of a strange tangent,
but there was a really good video by RabbiLord Jonathan Sacks, who I greatly admire,
blessed memory, because he passed away a fewyears ago, and it was to do with antisemitism.
And as part of the video, anti semitism isanti jewish racism.
By the way, part of the video, they werediscussing why anti semitism exists.
(34:36):
Again, a weird tangent that.
I have a point.
And they said that when it comes to.
When it comes to a negative situation, when it
comes to a negative event, because they'retalking about the origins of antisemitism,
there's two ways you can approach it.
You can say, what can we do about this?
(34:58):
Or who can we blame for this?And when you're looking at a thing like
autism, or you're looking at a thing, likeanything genetic, really.
If you have a parent that has a child who hasautism, there's a lot of resources out there,
(35:18):
especially if it's detected when the child isyoung.
It's very difficult sometimes to detect inbabies until you start reaching milestones or
not reaching them, but it's not true.
Leah (35:30):
They've actually done stuff.
Moshe (35:31):
They do fantastic.
Leah (35:32):
We can look them up and maybe post them somewhere.
But they've done studies where you canactually diagnose autism in babies as young as
a month because they track eye movements, youknow, the whole eye contact thing.
Moshe (35:44):
That's incredible.
I'm really interested, like, advances in
titans.
Leah (35:48):
But again, that's not genetic science.
That's observational science.
Right?ASD is an observational diagnosis.
Moshe (35:54):
So if you have.
Okay, so you have.
You are a new mother or you're a new father,your new parents, and you have a baby, and the
testing like you described is done, and thebaby has now conclusively been, you know,
designated.
This child likely has autism.
There's a number of different ways that youwould react to that news or what you would
(36:19):
take away from that.
And I don't know that it's.
That it's healthy or even responsible topander to the argument that one of their main
priorities is, whose fault is this?Your child has autism.
That's unfortunate.
I mean, I'm sure there's a lot of things we
can do.
What can we do to help them?
(36:40):
What can we do to help support them?What can we do to guide them?
What allowances can we make?What can we do to make their life easier?
Not, oh, they have autism.
Well, is this my fault?
Is this his fault?Whose fault is this?
Leah (36:50):
And again, why.
Why is autism one of those things?
Because it's so not nice.
Could you guys picture again, our baby has
their first asthma attack, and moshe goes,well, this is clearly your fault.
Everybody would say, he's so mean.
So why would.
Why would autism be anything?
Moshe (37:05):
Asthma, typo and taequin, diabetes, anything.
When you're in a position, especially as aparent, where you're essentially blaming your
child's conditions for, you know, on certainthings because, well, okay, so did I do
something wrong?Because, I mean, if you're a new mother,
(37:26):
you're gonna be worried.
Should I drink this?
Should I eat this?Maybe I took a pill.
Leah (37:29):
I shouldn't have taken autism.
Like, you know, the whole vaccine thing, which
has been debunked, by the way.
Please don't write me.
Don't write me.
I don't want to hear about it?
The whole vaccine thing and the whole, oh,well, nurture versus nature and did you expose
your child to mercury?And did you eat tuna while you were pregnant?
Did you drink caffeine?Like, there was a lot of those things around
(37:51):
that tried to blame the mom in the pregnancy.
And the reality is there's some environmental
factors, but the vast majority of it isgenetic.
We just don't understand why.
Moshe (37:59):
And, yeah, and again, as we said at the beginning of the episode, there is a
beneficial reason to do genetic testing,either before the case of.
Of autism being discovered or possibly afterand her daughter came home from school, or if
(38:24):
you're in the case of you have a child and thechild is now out and about and you've
diagnosed them as autistic, you're not.
If you're still at the point where you're
trying to decide whose fault it is, thenthat's not helping you as parents, and it's
certainly not helping the child.
(38:45):
Do you think your child cares whose.
Leah (38:46):
Fault it is that they have autism?
Moshe (38:48):
They don't care.
Leah (38:49):
They just know that that's something I kind of do.
Look at your family members and go, oh, yeah,oh, yeah, that's the autistic one.
That's where you got it from.
We kind of do, but it's more of a fun game we
play.
Moshe (39:00):
Yes, because when you have autism, it's very easy to.
To get to that point where you can kind ofmake light of it.
And it's not to try and diminish or belittleor undermine the fact that being autistic is
oftentimes difficult, sometimes wonder why.
And we're in a great position.
But at the same time, if you are spending somuch time trying to decide whose fault it is
(39:30):
and you're not providing support to yourchild.
Leah (39:33):
Exactly.
Moshe (39:33):
You're not giving your child the needs that it will have, given that it is autistic.
You're just trying to relay your own guilt.
And guilt.
Guilt has no place in a diagnosis.
Leah (39:49):
It really doesn't.
So a few things that actually are useful that
geneticists have found just for people'sinformation is that they have now notice that
autism runs in families.
It's not because of the MMR vaccine.
It's not because mom drank coffee while shewas pregnant.
It's not because you went bungee jumping whenyou were 25.
(40:10):
Whatever.
So they have noticed that full siblings, so
two full siblings together will have a 9.3%chance higher to have autism if their sibling
has autism.
So full siblings, mom and dad.
Say mom and dad, if one has autism, then theother one will have a 9.3 higher chance or ten
(40:33):
times higher chance of autism.
Moshe (40:34):
Almost.
Almost ten times higher chance.
Versus, you know, and for whatever reason.
Leah (40:40):
A maternal half sibling.
So you have the same mom, different dad, you
will have a 5.8% higher chance.
Moshe (40:47):
Right.
Leah (40:48):
A paternal half sibling.
So same dads, different mom, you'll have a
3.9% higher chance.
And even if your cousin is autistic, so first
cousin, you could have a 1.9% higher chance ofhaving an autism diagnosis.
Moshe (41:01):
So that child and another child share the same grandparents.
Exactly, yes.
So there's a link.
So there's definitely a genetic link.
Leah (41:11):
They've also noticed that if you have an older sibling with autism, you have a much
higher risk of having autism yourself.
If the older sibling is a girl, it is an
extremely high chance that any boys followingwill have autism.
Again, they don't know why, but statistically,it's a thing that they've noticed.
Moshe (41:30):
There's definitely something to discuss.
Leah (41:32):
For example, Raya is the oldest child that I've, you know, born, and she's
different.
I don't know.
She's some sort of neuro.
Spicy.
I'm not exactly sure.
And Avro came out like full autism and ADHD,
which we haven't had diagnosed yet.
But a neurologist looked at him and was like,
(41:52):
yeah, so bring him back, because ADHD, andthat is apparently a huge thing.
Whereas if the girl is older and they'reneurospicy or even not, if your older sibling
is a girl, you have a much higher chance ofhaving genetic predisposition to ASD.
Moshe (42:09):
Right.
Leah (42:13):
So let's discuss the three types of testing that they currently do right now.
The first is they do a chromosomal arraytesting.
That means they're looking at the 23chromosomes for mom and 23 from dad and seeing
if there's anything amiss there.
At this point, that's very easy for them to do
because they're quite practiced at it, andit's large chunks.
(42:36):
Right.
You're looking at the whole recipe books or
the whole shelves at the same time.
Moshe (42:40):
That's sort of the array.
The array test is typically how you would
diagnose trisomy 21, because, like I said,it's very easy to see that third set on the.
On the 21st tier.
Leah (42:53):
Then they talk about fragile x. So they check for fragile x chromosome.
Boys are more severely affected by thatbecause they only have one x chromosome.
And if it has it, then they're affected by alot of times a much higher risk of ASD.
And they have learning disabilities andintellectual disabilities.
Other things, the shyness, sometimes someunique.
Moshe (43:17):
Facial features, and girls, because they have the two x chromosomes, it's less
obvious.
It's off.
Like the unhealthy one is offsetting or isoffset by the healthy one, which causes
symptoms, but less severe generally than boys.
Leah (43:36):
And the third one is whole exome sequencing.
So that means they literally go through everygene and they check the spelling of all the
genetic code.
That is the most expensive, the most
extensive, the hardest to get, and it takesthe longest, probably the least useful because
we only know what some of the genes do, right?
Moshe (43:56):
Because you could get a bunch of different hits about certain spelling errors.
We'll call them and, you know, you'll look atthem and go, what does that mean?
I don't know.
Leah (44:08):
So syndromes that can arise from these genetic differences, I don't think we're going
to spend a lot of time on that.
I think we can do maybe a separate video or
write a little article about it or somethingif that interests people, let us know.
The last thing I wanted to talk about is,again, this is one of those why questions.
(44:29):
Why would you bother if you find a gene thatis associated with ASD?
The person actually may not even have ASD, sothey have the gene there and they don't have
it.
I have that, actually, I was contacted after
my genetic testing and asked if I wanted toparticipate in a study because I have a gene
that should theoretically give me 70% chanceof having autism, which clearly I must have
(44:54):
passed on.
Right?
But we don't know.
And if you have no genetic cause, you can
totally have ASD.
Moshe (45:02):
Right?
Leah (45:03):
So we don't even see what the point of looking for it is.
Moshe (45:07):
Right.
Ultimately, some things are worth testing,
again, either because they come with, youknow, significant health issues or drastically
reduced life.
Some things are more.
I don't know.
I think I would.
(45:27):
I would characterize them in the category ofdesigner genes.
Like if you kind of prefer that your child benot autistic or maybe you.
Or if you want your child to have blue eyes orlong eyelashes, you know, you want to.
You want to basically pick and choose what youwant your child to look.
Leah (45:44):
Like, which is illegal, by the way.
I think in most countries maybe all.
Moshe (45:48):
It definitely is.
And if it's not, it should be because there's
no instance whatsoever of the color of yourchild's eyes being a factor in whether or not
you either carry the child to term or you lovethem.
(46:12):
And unfortunately, I do have to bring up thecase of gender selection because it's a big
deal because I come from Canada and mostrecently in British Columbia on the west
coast, and there is a huge instance in thewest coast of not doing certain testing unless
(46:41):
it's absolutely unnecessary.
Absolutely necessary.
Because in certain cultures, and I won't namethem for the sake of not being accused of
being racist or whatever, but there arecertain cultures that definitely favor males
over.
Over girls.
And they went so far as to actually make itagainst the law to tell the parents the gender
(47:06):
of the child because it would increase therisk that they would abort a child if they
were a girl.
Leah (47:13):
Yeah, I don't want to go there, but it's absolutely a thing.
I don't even believe in it.
And gender selection, and again, it's illegal.
I believe in most places.
I think some places you can do it, but I would
have to do research on that.
And then I don't know that I want anybody to
look at my Google history if I did research onit.
Moshe (47:31):
It's definitely a big thing.
And I know that in Canada they're really
trying to restrict it and it already is quiterestricted because needless to say, if you do
genetic testing on a baby, you can easilydetermine what sex it is, obviously.
And they definitely don't want to get into it.
Leah (47:50):
They do have a test.
Now, did you know that when mom is pregnant
and baby is far enough along, they can takemom's blood and sequence the entire baby's
genome?
Moshe (47:58):
Interesting.
Leah (47:59):
Yeah. So you can see everything.
And it puts a lot of people at ease because
they do test for a lot of the bad stuff beforebaby's even big enough to see on the
ultrasound.
But also.
Moshe (48:11):
Right, because it's not.
It's, again, one of those things where you're
like, okay, the baby's there.
Does it really matter?
Unless it's something that could significantlyimpact their life.
Leah (48:23):
Now we're getting into a pro choice talk, which I'm happy to talk about again,
separately.
Enough interest would have to be shown in
order for me to do that.
I'm going to go out on record here and say
that I am pro choice.
I have interesting theories about what choices
I would make and willing to talk about themreligiously.
Moshe (48:43):
You really can't help but be pro choice because if you are of the mind that every life
is sacred and every child is important, thenthey have to be allowed to thrive in whatever
capacity they can.
(49:03):
But ultimately the child is.
We don't believe in suffering, part of our,part of the mother.
And I mean, again, I'm not going to get intoit, but if the mother determines that the
baby's at risk of suffering, then obviously wehave to consider those sorts of things.
But again, that's a great conversation that wecan certainly get into if enough interested
(49:26):
is.
But otherwise, we'll try to stay away from the
abortion debate as much as possible.
Leah (49:33):
Okay, so with our last ten minutes, let's talk about our actual experience.
So they already know.
I said twice that I had a bunch of blood
drawn, and they did genetic testing.
And then because we said the words autism, we
just said them in the office.
While they were deciding which blood test to
run on me, we were summoned to a geneticcounselor.
We walked into the room, and you actually hada very interesting thought process about it
(49:59):
before we went, because he said, well, havingASD is really hard for me, honey.
If we can not have a kid with ASD, that wouldbe a good thing.
That was actually what you said to me beforewe went.
After we went in there, after hearing what thegeneticist had to say, moshe changed his mind
drastically and quickly.
I was always of the mind that it's not the
(50:21):
type of thing that I want to test for, becauseit's not the type of thing I'd want to exclude
or get rid of.
But he had a different opinion.
So we sat down, right?And the genetic counselor looked directly at
you and then asked a whole bunch of, like,really invasive and inappropriate questions.
(50:42):
Right?Are you healthy?
What do they define as healthy?Somebody with no genetic predisposition to it?
And of course, you have to answer no. And oncethe autism thing came up, that was all she
thought about.
I was the mom literally sitting there going,
I'm the one who's going to be pregnant.
I was trying to interject.
I have these genetic issues.
(51:02):
Would you like to look at them?
And she was like, no, let's talk about autismfor 4 hours.
And then she definitely said, you know, well,based on what I'm seeing, he has a very strong
history of passing on autism, and are you surethat you want to do this?
And, you know, we do have a possibility oflooking at any zygotes that you produce in.
(51:23):
You know, she didn't say the words, but itcame through as deleting any mistakes that
might be there.
And that's when you sort of looked at me and
said, honey, I'm not a mistake.
And I said, I know I told you.
And I think we kindly on my part, kindly onhis part not so kindly told the geneticists
that we're done now.
And if this isn't a necessary thing to do in
(51:45):
order for us to have a baby, we would like tobasically, yes.
Moshe (51:51):
The idea of creating a child, if you have the option that is not autistic, you
know, it was tempting to.
Leah (52:00):
You for, like, 3.5 seconds.
Moshe (52:02):
It may be preferable on the surface, but deep down, you really do have to consider
the fact that we're talking about an actual,you know, life potential.
And it's the difference between being able togo in and, like, switch off the autism in a
(52:27):
particular zygote and just being like, well,no, because that's what we're talking about.
We're not talking about just, like, doingsomething.
And then, oh, they're not autistic anymore.
Leah (52:37):
I'm more the sciency one.
So Moshe didn't understand, and when she.
He didn't understand what they meant by it,and when she explained that they would be
creating zygotes.
Right.
So creating life basically, essentiallybabies, not to full term or anything, and
throwing them away, he was horrified.
Moshe (52:55):
Yeah.
Leah (52:56):
It's because we don't have the ability to turn on and off jeans.
Right.
But you didn't know that.
Moshe (53:00):
I'm not as familiar with science, so I wasn't clear on what we were talking about.
And when I was clear on it, I'm definitely ofthe mind that every life is important,
especially if it's, like, from me.
Like, I don't think that any part of me should
be thrown away because it's a little bit off.
Yeah.
Leah (53:21):
So, yeah, he looked at me and said, honey, I'm not a mistake.
And I said, honey, I agreed before we evencame in here.
And then we said to her, can we still proceedif we don't do all here?
Because she wanted to do all kinds of testingon you to see if they could find a gene that
they could, you know, use to select for thebest embryos, et cetera, et cetera.
And we said, is it necessary?She said, no, you'll just have to sign a
(53:43):
waiver.
And we said, okay, bye.
Moshe (53:45):
Yes, I would gladly sign a waiver that said that I'm aware that my child has a good
chance of being autistic.
Like, oh, well, you know, whatever.
Leah (53:55):
Them just living in my uterus, they have a good chance of being autistic because
there's an oldest female sibling and theirolder brother is profoundly autistic, you.
Moshe (54:05):
Know, oh, well, you know, we're in for the ride, and it's it's going to be a really
awesome journey and we definitely look forwardto involving all of you on it with us,
depending on how things go and what happened.
But yeah, so this is another episode.
(54:26):
We're really, really going to try to stick toa Sunday recording schedule and little
content.
So if you haven't had a chance to check out
our TikTok or our Instagram or Facebook, thenI would advise you to go do that.
There's a lot of really funny stuff that Leahand I put up, a lot of stuff involving the
(54:46):
kids.
We're still going to try and figure out a way
to involve the kids in some way in thepodcast.
Leah (54:53):
And I mean, they heard Ryan come home today.
Moshe (54:55):
They did.
She was already, it was her debut on.
You can email us at contact us at 99autistic.com.
You can search for 99 autistic on YouTube, onApple Music, on Spotify, on pot chaser, on
iHeartRadio.
Leah (55:13):
And it really helps us a lot, actually, when you just listen, download, share rate,
interact with the podcast in any.
Moshe (55:19):
Way on our podbean homepage, of course.
Leah (55:21):
And also check out our Patreon.
I mean, it does allow us to do more of this
content.
Moshe (55:26):
We do have the ability to have you, you know, tip us or donate to us if you want.
It's on the website.
It can be a little, or it can be a lot.
It doesn't really matter.
There's some little gifts and stuff that I put
up for people that give a certain amount.
But honestly, if you like what we're saying
and you want us to keep saying it, itdefinitely helps.
(55:48):
But, but we're going to try and keep it as, assimplified as possible.
So thank you very much for listening today andenjoy the pleasant sounds of our outro.
Well, that's our show for today.
(56:09):
Now, you know, one autistic just a little bit
better.
So something you may not know about some
autistics is that we often struggle withending social interactions.
So layup.
Leah (56:24):
All right, Moshaw, I'll take care of it.
Thank you for listening to now, you know, one
autistic.
See you next week.
Hi, I'm Moshe, and I'm autistic.
Leah (00:14):
I'm Leah, and I'm boring.
Moshe (00:16):
Welcome to now you know one autistic.
Leah (00:18):
A podcast about neurodiversity in couples, marriage meltdowns, and making it all
work.
Moshe (00:23):
The opinions expressed in this podcast reflect the experience of one couple and one
autistic.
Leah (00:28):
Nothing that you hear in this podcast should be taken as a medical opinion.
And unless otherwise stated, no one is anaccredited specialist in any of the many
fields that comprise the autism spectrum.
Moshe (00:39):
But as someone who is on the autism spectrum, I feel that my experiences will be
very valuable to many of you.
Whether you're on the spectrum, a support
person like Leah, or just a curious bystander.
Leah (00:51):
If you think that you or someone you care about may be autistic, consult your
family doctor.
Hi, Moshe.
Hi, Leah.
How are you today?
Moshe (01:06):
I'm great.
How are you?
Leah (01:08):
I'm right.
So we're going to be doing an episode about
something that we actually went throughrecently and how we feel about it.
So what we're talking about is genetic testingfor autism spectrum disorder and related
disorders, and genetic testing, pre pregnancyand pre IVF in general, I suppose, will be one
(01:31):
of those things as well.
Before we get into the meat of our experience,
which was interesting.
It wasn't bad, but it was up and down.
We're going to talk about genetic testing ingeneral and genetic testing for ASD, just so
people have an idea of what it is.
Before we get into when we had to sit down
with a genetic counselor and how that wastraumatizing.
Moshe (01:53):
Right.
Genetic testing is something that, I mean,
unless you know that you have a specificcondition or you know that your family has a
specific condition, it really only comes upwhen you are trying to have a baby, because
when you are with a partner and you decide todo the thing where you sort of combine your
(02:16):
DNA, that's generally how babies happen.
Leah (02:20):
Did you know?
Moshe (02:21):
I did know.
I have a sneaking suspicion.
I just really like your smile, so the rest isjust kind of a bonus.
But the genetic testing thing often comes upin the case of trying to have a baby, because
the question that a lot of the people ask is,do you know if you have a family history of
(02:44):
this or if you have a family history of that?Leah and I are both Ashkenazi Jews on our
mother's side.
So with our particular line, there's
definitely a higher instance of certaingenetic conditions.
But it's really only in the case of people whohave, like, two parents who are Ashkenazi
(03:05):
Jews, which we don't.
Leah (03:08):
So when you're trying to have a baby, what they'll generally do is they'll test mom
for all kinds of stuff.
Right?
So they tested me for the Ashkenazi Jewdiseases.
You know, one very prominent one, or used tobe prominent, is tay sachs, which they always
check Ashkenazi juice for before they havebabies, or they try to.
They tested me for, you know, geneticmutations that cause breast cancer and
(03:35):
cervical.
Or was it ovarian cancer?
Moshe (03:37):
Ovarian cancer.
Leah (03:38):
I don't have those.
They suspect you have it on your side, but
they haven't checked you because, well, thelack of ovaries, it would.
Moshe (03:44):
Really only be girls that, I mean.
Leah (03:48):
You can carry the jeans.
Moshe (03:49):
You can.
But if you have a daughter, they could.
It could be affected by it, or if you have ason, who in turn has a daughter.
So if you have a granddaughter, they couldcarry the gene, because, of course, the boy
would pass it along to another boy, who wouldpass it along to a girl.
And you could be wondering, why am I at ahigher instance of not just ovarian cancer,
(04:10):
but anything?And then they can trace the line back.
Leah (04:13):
The reason we're saying that is because Moshe's mother, who we love very much, passed
away from ovarian cancer.
So it might be on his side, but his sister
doesn't have it.
So anyway, they didn't find it worth testing
him for.
So what they'll generally do is test mom,
which they did a battery of tests on me.
Those were the two that I can think of right
now.
But they did also the general ones, you know,
(04:35):
trisomy, which is for down syndrome, and spinabifida.
Not spina bifida, but muscular dystrophy.
Sorry.
Spina bifida is not genetic.
It's a malformation.
Moshe (04:46):
Folic acid.
Folic acid.
Leah (04:47):
Folic acid.
So they did, you know, all that stuff, they
looked for proteins in my blood cells and allthat other stuff.
They didn't find it necessary to test moshefor anything.
But they were very interested in his autismand adhd diagnoses.
And the third thing that can happen is whenyou either have an embryo or a baby, they can
(05:08):
test the embryo or baby as well.
We don't have either of those at the moment.
I mean, we have older babies.
And Riah has had genetic testing for other
things.
So that is how that generally will go.
So I've had a battery genetic test at thispoint, can genetic testing, or, sorry, it's
(05:31):
done through blood, by the way, just for thosewho really have no idea.
They draw a whole bunch of blood, and theylook at your DNA or specific parts of your DNA
that they know cause certain disorders.
Moshe (05:42):
There are genetic testing that they do through saliva or through a cheek swab.
You might have seen the commercials for, like,23 andme and ancestry.com dot.
Leah (05:52):
I get ancestry.
Moshe (05:53):
And that does some testing of genetics.
But the really conclusive, like, targeted
genetic testing does have to be through bloodtests, because you.
You can tell, for example, by testingsomebody's genetics through, like, a cheek
swab, their matrilineal line, theirpatrilineal line, if they're a high instance
(06:17):
for having wet earwax or, like, unnecessarybut interesting how much Neanderthal.
How much Neanderthal you are.
That was going to say that one.
Like, if you're related to Genghis khan orsomething, but not.
But if you want to know, like, if your childor if you yourself carry genes, blood tests
are really the way to go.
Just to be sure.
Leah (06:37):
I did the ancestry.
It showed literally 50% to 51% Ashkenazi and a
bunch of other stuff.
So, you know, french and italian and other
things.
I was curious about the other parts that I
knew.
So that was just for fun, though.
That doesn't really diagnose anything.
Moshe (06:54):
Yeah, I mean, if you're into genealogy or whatever, it's kind of nice to see where
you come from.
Or if you're adopted and you don't really know
your birth parents, you might want to trackthem down.
Or if you are, you know, if you're looking forrelatives, you can pay some money and stick a
swab inside your cheek and send it to a bunchof people in a lab, and they can find your
(07:17):
fifth cousin, once removed, who lives in somecountry, introduces you to a great, great,
great grand relative that you never knewexisted.
Leah (07:25):
So we're kind of rambling.
I just want to verify.
So Moshe and I have both done the 23 andme andthe ancestry for fun.
That doesn't diagnose anything.
Moshe (07:32):
Yes. So the actual instance is sort of getting back on topic.
We engaged in genetic testing because we'relooking to increase our family.
And, of course, Leah and I want to get thetesting done to.
Well, let's backpedal that.
We didn't actually want to get the testing
done.
It was.
We were asked to get it done by the peoplethat we were Israel.
Leah (07:54):
That's kind of required because we're of a certain age.
Yeah.
Moshe (07:58):
Leah's a little bit on the older side.
Still gorgeous, like.
Like a fine wine.
Leah (08:04):
Thank you.
Moshe (08:05):
And I am like a different kind of wine.
Anyway, the wine analogy doesn't work.
But the point is, because of our age, whichisn't that big a deal in Israel, because
people continue to have children until they'rephysically not able to.
Leah (08:18):
But they like to do tests.
Moshe (08:20):
They want to know, just so you know, what the chances are.
And of course, they test for a variety ofgenetic conditions, or what they suspect are
conditions that have genetic links.
Which brings us to the topic of the episode
today.
Leah (08:36):
Right.
So that is the medical testing that we've
done, mostly me.
So I had nine or ten vials of blood taken, and
that is more of a diagnostic thing in terms ofthat.
So if mom has issues, then they'll check dad.
If dad and mom have issues, then they'll check
baby or fetus or embryo or zygote.
Moshe (08:57):
And we had some conversations which we'll get into.
Leah (09:00):
We'll get into it.
So my first question to you, Moshe, is can
genetic testing diagnose ASD?
Moshe (09:08):
The answer to that question is possibly.
Leah (09:11):
So the answer to that question from my research is probably not.
Yes, at best.
Moshe (09:18):
Sometimes they can detect some genetic links that might lead to a higher instance of
people developing ASD, but they can'tdefinitively state this gene here causes
autism.
Leah (09:34):
So they will never actually diagnose autism based on their genetic or blood tests,
ever.
Not without it being in conjunction with the
formal testing which you and Avram have bothhad.
Right.
So the 802 that you filled out and the other
diagnostic tests that you filled out and thetests for ADHD and stuff, which are written
tests which you're supposed to do partially onyour own, partially with your partner or
(09:55):
parent if you have one.
Because sometimes we're not the best at
knowing how we actually act or feel aboutthings.
Moshe (10:01):
Autism is weird, though, because unlike some other genetic conditions, because if a
child is in utero or a child is newly born ora child is developing, you can look at them
sometimes and go, well, that baby has trisomy,that baby has this, that baby has something.
(10:25):
There's definitely something going on withthat baby.
But autism is one of those conditions thatthey label as invisible in that you could look
at a baby and you can't definitively look atthe baby and go, you see right there, that
autism right there.
Leah (10:39):
So that's why essentially, you need the written tests combined with somebody actually
observing you.
So somebody who's trained in this.
Right?So either a neurologist or psychologist or a
psychiatrist or a therapist, or in the case ofAvram, a developmental pediatrician which is
an extremely specialized specialty, and theywill diagnose you with autism spectrum
(11:02):
disorder and often ADHD as well.
And then they can investigate genetic reasons.
But our question ultimately is why?Because once you've been diagnosed with
autism, they're sort of very early on in termsof defining which genes actually might cause
(11:25):
autism.
And even if you find them, it's not going to
improve your quality of life, your treatment,or find a cure.
So ultimately, we feel like the geneticinvestigation of autism is essentially for the
curiosity of the scientists who are doing it.
Moshe (11:41):
And there's a few things that we saw or read about in terms of some of the testing
that was done and the reasons behind it.
Leah (11:51):
There are some useful ones.
So if they can diagnose a syndrome that has
ASD as one of the symptoms, then it canabsolutely help the treatment of that person,
because those often come with other healthproblems.
Right?So, like heart problems or, you know, walking
problems or whatever.
So there are a few syndromes that tend to have
(12:12):
ASD as a symptom or a much higher level of ASDwithin them, and those can be determined
genetically.
But just for your garden variety ASD, I don't
know.
We're not so sure how we feel about that.
Moshe (12:24):
Yes, because ASD is interesting in that it's a condition, or if you use the actual
term, it's a disorder, but it's also a symptomof other disorders.
Or like Leah says, it's a. There's certainother syndromes, genetically caused syndromes
(12:48):
that allow a person to have a very high oralmost, you know, inevitable diagnosis of
autism.
And if you can identify autism from a genetic
component, and you know that this child hasthis syndrome, which also comes with physical
things or predispositions for kidney issues orheart issues or digestive issues, and you can
(13:09):
go, okay, then.
Leah (13:10):
You can test the heart and the kidneys.
Moshe (13:12):
That kid is autistic.
But also they have this, which means we have
to check these things, which.
Leah (13:16):
Is the only reason we honestly found, after really looking into it, that we thought
was even somewhat necessary for genetictesting for ASD.
Another reason why we find it so unnecessaryis because there are currently 1000 single
genes and 17 genetic regions.
(13:36):
So when you talk about genetic regions, I
believe they're talking about, help me here,not genes, but chromosomes.
They're talking about chromosomes that havebeen associated with ASD.
Therefore, if you can find a thousand ofsomething that may or may not cause something,
is it actually really that useful to you?
Moshe (14:00):
It's really one of those instances going back to the analogy of ancestry.com,
where you run your genetics through theirfilter and you go, well, this particular
person has, you know, a certain percentile ofshared chromosomes or genes or whatever with
(14:23):
you.
So it's quite likely that they're a cousin of
yours.
And your answer to that would be, oh,
interesting.
And then that's really, that's really
inaccurate.
Leah (14:33):
Because I have an aunt who I know is my aunt, right.
And genetically they said she is a closerelative of yours.
She might be your aunt, your sister, or yourmother.
Moshe (14:41):
Right.
Leah (14:41):
So it's.
It's. It's not like a targeted thing, the way
people think or the way they show it in themovies.
Moshe (14:47):
It's kind of like a shotgun versus a laser.
You kind of have a whole range of potentialsversus a. This is 100% unreservedly the case.
Leah (14:58):
So as of 2022, only three to 40% of people will get a genetic diagnosis.
So they've already done the eight O's, two.
They've already done, you know, being seen by
a neurologist.
They've already gotten that diagnosis on
paper, and then they'll look at their genes,and only three to 40% of those people will
they find a genetic diagnosis.
Moshe (15:18):
Right.
Leah (15:19):
Now, does that mean they don't have a genetic predisposition?
No. What it means is that currently geneticsis very limited.
They don't actually know what they're lookingfor.
So if you don't look at the part of the genesor the chromosomes that are causing the
issues, then you're not going to see it.
So it's going to come up as a non test or a
(15:40):
negative test.
It doesn't mean it's not there.
It just means they can't find it or they don'tknow what they're looking for.
Right.
Moshe (15:45):
And that's why we actually saw a video that said that if you don't get a diagnosis of
a genetic, genetic autism, then you actuallycan come back in a few years and test again.
Because they are still so early in the stagesof identifying genetic links to autism that
(16:06):
constantly new research is being.
Is being reached.
And today they might say, you don't have agenetic link to autism, but then in ten years
they might go, oh, see, that gene is what wenow know causes, you know, causes autism, but
it's not there.
Leah (16:22):
So you're.
Moshe (16:22):
It's. It's, for lack of a better term, a **** shoot, because you never know if the,
the negative you're getting is a definitive noor if it's a not right now type of thing.
Leah (16:32):
Exactly.
Either way, it's not a no, because if a
psychiatrist has diagnosed you with ASD, youhave ASD.
If you meet the criteria, you have it,regardless of whether your genes say you do or
not.
Moshe (16:42):
And that is essentially what they told me because I have a formal diagnosis of
autism, of ASD and ADHD.
And then when we start talking about genetic
testing, it was like, okay, so you have yourdiagnosis.
That's wonderful.
You should probably also investigate your
genetic links that might have caused yourautism.
(17:04):
And we had a discussion about it, and again,it really came back to the question of why,
what's the point?
Leah (17:10):
And the answer.
So geneticists don't like to say this, okay?
They will sit with you and they will say,well, it's for your health.
It's to make sure for your general health,it's to see for the health of your offspring.
It's to see family stuff.
And then eventually they'll start using terms
like family planning.
And then eventually, if you push them enough,
they will tell you, so that you could excludeembryos or so that you could decide whether
(17:35):
you really want to mix those genetics togetherto see, you know, if the baby is going to be
functional, you know, healthy.
They like to use the word healthy.
If the baby is going to be.
Moshe (17:45):
Healthy, if you can, if you're fortunate enough to be fertile, then you can
essentially do the things that, you know, menand women do to get pregnant.
And then the baby comes out and it's there.
There's not a whole lot you can do about it.
But if you're going through more designermethods like IVF or other things, then you're
(18:09):
essentially taking a natural process andmaking it into a moral debate.
Because what they're really asking you is ifyou're going through IVF and you are creating
a certain number of viable embryos and they'rejust sitting there, do you want us to have the
(18:32):
ability to look at them and go, well, that onedoesn't have a genetic predisposition for
autism.
That one does.
So we're going to take the one that doesn'tbecause you don't want to give that
opportunity to your child.
Leah (18:45):
So essentially, what they're talking about, and that's eugenics, ultimately, is
eugenics.
Moshe (18:49):
That's all it is.
Leah (18:50):
And that's the only reason other than the, you know, syndromatic with other health
problems that we could see that people wouldwant to do genetic testing for ASD or ADHD or
any non life threatening difference that theywould want to weed out of their family and
there are people who absolutely would want todo that.
And I have opinions, but I'm not going to passmoral judgment.
Moshe (19:14):
And I mean, I have opinions, too, and I can speak from first hand.
Leah (19:17):
Experience, but I mean, we're jews.
We know what eugenics is.
Moshe (19:20):
Yes, unfortunately, eugenics is something that the jewish people throughout
history have a very long and bad history withbecause it's something that happened.
And, you know, anyway, we're not going to getinto it because this is a podcast about
neurodivergency, not, you know, genetics, butessentially look up, you know, Doctor Mengele
(19:42):
and the people who conducted.
Leah (19:44):
Doctor Asperger.
Moshe (19:46):
Yes, Doctor Asperger.
People who essentially, their job was to
either try to find what makes a person fit andwhat makes a person unfit and then what to do
with the ones who are unfit.
And that is, unfortunately, something that's
still happening today.
(20:06):
Because if you.
And again, this is a podcast about autism andemergency.
It's not a podcast about religion.
But if you are the kind of person who
believes.
I don't want to get into pro choice or pro
life, but if you're the kind of person thatbelieves that a child is a child is a child,
(20:27):
then you have to decide if you're comfortablewith, you know, that kind of tinkering with
essentially what amounts to God.
And that is not something that everyone is
going to want to do and not something that,honestly, I feel should be available if
there's a chance.
Because, and again, this is a slippery slope,
(20:50):
and I'm trying very hard not to get into it.
But if you are looking for a predisposition
genetically for something that will cause thechild immeasurable pain, reduces lifespan,
cause them constant health issues like taySachs.
Leah (21:03):
That's why we test for that, then.
Moshe (21:05):
You'Re going to go, you know what? I get it.
But also, I would rather have a child that Ican, you know, who's going to live a healthy,
hopefully long life versus a child, you know,that I'm going to take a chance that.
That I'm going to have a child that may end uphaving a life of pain and suffering and
drastically reduced.
But autism is not like that.
I'm autistic.
(21:26):
Avram is autistic.
There are many autistics out there, except forbeing somewhat, you know, I don't know, they
have some.
Some processing issues, but it's not fatal.
It's not causing them pain.
It's not causing them to be, you know,
challenged in some way.
And when you have a child, any child, you
(21:50):
don't know, if that child's gonna sleepthrough the night, it's gonna have digestive
issues, it's gonna be lactose intolerant, it'sgonna have colic, is going to have frequent
ear infections, it's going to have asthma, isgoing to have any number of conditions.
So you're just basically, if you want to goalong the idea of creating a superman or
(22:12):
superwoman kind of child, then what's thepoint anymore?
Leah (22:16):
I mean, I have a very strong genetic predisposition to asthma.
My mother's asthmatic.
I'm asthmatic, right?
Our daughter's asthmatic.
Moshe could look at me and say, do I really
want those asthma genes in my baby?And that's kind of where we feel that we're at
in terms of the autism genes?Well, yes, it definitely causes people to have
(22:37):
a harder life.
Yes, it definitely causes.
I'm not minimizing the struggles of peoplewith autism.
Please don't take it that way.
But is it worthy of saying this person doesn't
deserve to exist?I mean, I would ask an autistic, ask any
autistic, do you like your life?Are you happy that you're alive?
And someone say no, but a lot would say yes.
Moshe (22:57):
Unfortunately, people with autism are at a higher instance of mental illness and
suicide.
But I think that has far more to do with a
lack of support versus a constant struggle.
There was an article in the paper in Canada
not too long ago about a woman who was tryingto do the medical assistance and dying program
(23:20):
because she was autistic.
And it really kind of horrified us because to
my understanding, again, I'm autistic, my sonis autistic.
And sometimes it's difficult.
Sometimes it's hard.
Sometimes, you know, it's challenging.
But would you, is autism something that you
(23:40):
would be willing to look at a child and go,you don't deserve to live because you might be
autistic?I would argue no. And for me, I believe that I
am in a position to make that call, because,again, I am autistic.
And I would very much like to have beenallowed to continue to live if my mother had
(24:02):
been given the choice.
So I am not a mistake.
I am not an accident.
I am not an error.
I am a human being.
And while I do have my own challenges and my
own difficulties, I have a lot to contribute,and I believe that my life is valuable.
And the life of any child who has the chanceof developing autism is just as valuable.
(24:26):
We are not trying to create a super race.
We're just trying to have a family, right?
And that's really what this is about.
Leah (24:33):
With all the diversity and challenges that come with that, because every human being
is born diverse.
That's what sexual reproduction does, right,
versus, you know, cloning or whatever.
And everyone has their own challenges in life.
Moshe (24:47):
Everyone does.
If your skin is a little bit lighter, you
can't be in the sun as much if your eyes areblue, if you have a predisposition for.
Leah (24:56):
I like Moshe's blue eyes, but I'm not going to choose our child's eye color.
Moshe (25:00):
Diabetes, like, there's a lot of variables that a child could develop and you
could go through all the testing and try andtheoretically weed out every little thing that
they have the ability to test, and then boom,there's like something else that they didn't
expect that comes up anyway.
Leah (25:13):
But how many things do they not have the ability to test?
If you talk to, again, an honest geneticist,they will tell you there are so many things
they don't have the ability to test becausethey haven't studied it yet, because they
haven't found it yet, because they don't knowexactly.
The human genome is huge.
Moshe (25:27):
It really is.
Leah (25:29):
Speaking of which, speaking of mistakes and spelling errors in the genome, let's get
back to genetics.
So there are two types of changes that you
could see in some of these genes.
So basically, against the expense, one is
called monogenic and the other is calledpolygenic.
Now, mono means one, poly means money, justfor those of you who are out there.
(25:50):
So monogenic changes means that there is onechange in the genes, right?
So one gene is off, it's knocked over, it'smisspelled, it's the wrong letter, and then
it'll maybe knock over another gene furtherdown the line and cause some sort of a
diagnosis.
So, you know, a syndrome or an issue like
asthma, like I have, or an issue like cancer,for example.
(26:15):
And then there are polygenic changes, whichare multiple but subtle changes in many, many
genes that will cause a very complex disorderlike autism.
And they just don't really have thetechnology, truthfully, to look in detail at
all of those little changes.
(26:35):
So it may be the way genes work right there.
They're lettered and you expect, you know, ana to be here, a g to be there, a t to be
there.
And it may look like you're agtagt, and then
suddenly there's another t there somewhere,and you have many of those in a line, and it
could cause nothing or it could cause autism,or it could cause.
(26:58):
I don't know, skin rashes, I don't know.
It could cause anything.
Moshe (27:02):
Right.
There's certain genetics that are very clear.
Leah (27:06):
The ability to do that reliably, or they do, but it costs a lot of money.
And then you're looking at every single gene.
And even then, if they don't know what that
gene does, turned on or turned off, you'regoing to have to go back in a few years
anyway, once they've done more research.
Moshe (27:21):
Exactly.
Certain things are very easy to detect.
Certain things are not.
Certain things are detected very simply
through pure genetics.
The reason that down syndrome.
Down syndrome is a chromosome.
It is.
Leah (27:35):
Chromosomes are the big parts, right?
Moshe (27:37):
So you get a certain number of chromosomes from your mother and a certain
number from your father.
Leah (27:41):
I think they have an extra.
Moshe (27:43):
Now, what down syndrome is, down syndrome's actual scientific name is trisomy
21, because on the 21st pair, there is threegenes instead of two.
Leah (27:55):
So they have 24.
Moshe (27:56):
They have 24 genes instead of 23.
Again, 23.
Andme is not called 23 me because it's a luckynumber.
That's literally what you have.
And on the 21st, whatever you want to call it,
there's a third when there should only be two.
And that is what causes.
Leah (28:15):
So one for mom, one from dad, and a random.
Moshe (28:17):
And then just like a random anomaly, they have an extra chromosome, and it is a
very clear link.
Like, you could do a panel and go, there it is
right there.
Leah (28:29):
And it's very easy to see because it's on the chromosomal level, which is not the
individual genes, but it's sort.
Moshe (28:35):
Of the whole big picture and something like fragile x, you could look at the X
chromosome and see that little piece and go,that's fragile x.
Leah (28:43):
We're going to talk about fragile x.
Moshe (28:44):
But autism, there's no.
Leah (28:46):
You can't.
Moshe (28:46):
You could look at all the genes and you can't, like, look and go, oh, well, see there,
right there is on that thing that means thatautism.
Leah (28:53):
Individual lettering within the chromosomes, and it's very complex.
Moshe (28:57):
It's. They discussed it in the video.
It's like looking at a book, and you have to
basically open the book and go through everyrecipe and find a spelling mistake in one
recipe of one ingredient and go, see, that iswhat's causing this.
Leah (29:16):
And in reality, our scientific ability is more like looking at all the recipes and
seeing whether or not they're cookies.
Moshe (29:22):
Right.
Leah (29:23):
But looking for spelling mistakes in the individual ingredients is.
It's very involved.
It's possible, but it's very involved.
Moshe (29:30):
And if you're looking at the 21st shelf, and you go, there's three books there,
and there should be two.
Leah (29:33):
That's easy.
Moshe (29:34):
You can just look at it.
You don't even have to do anything else.
But with autism or with the potential forautism as well as other syndromes or
disorders, you really have to go down, downdeep to the.
Like, the actual letters and go, there's an athere, and it should be a g, or whatever it
is.
I'm not a geneticist.
Leah (29:52):
And even then, they don't know what that means because they haven't studied it.
Moshe (29:55):
That could be a thing.
Leah (29:56):
You're like, there's a g there, but.
Moshe (29:57):
We don't know what that does because the truth is, and again, not trying to get
into religion here, but the fact that a humanbeing is created the way they are is super
scientific.
Leah (30:10):
It is.
Moshe (30:10):
It is.
It is, frankly, amazing.
And the truth is that every single person onearth has something a little bit off because
you can't create that much complexity and not,like, accidentally.
Like, there's a thing there that should bethis nothing.
It could be a nothing.
(30:31):
It could be, you know, a little thing that
adds an extra freckle to your skin or, like, astreak of white in your hair that they don't
know why it happened.
Like, it could just be something so minute, so
minor that, well, there's a genetic error.
That genetic error makes, you know, my nails
grow longer than normal, but that geneticerror makes my brain not work.
Leah (30:54):
Like you're getting into Darwinism and the survival of the fittest.
Right?Genetic errors are what cause evolution.
Moshe (31:00):
Exactly.
Leah (31:00):
It's just that they're beneficial genetic errors.
Moshe (31:02):
Some are, some aren't.
And again, that's like, there's lots of
podcasts about evolution and darwinism.
Leah (31:10):
But, yeah, so that is where we're going, is really, again, science.
When you see it on tv, when you see it in thecrime dramas, when you see it in the medical
dramas, it makes it look like we reallyunderstand more than we do.
But our ability to really understand geneticson that level is quite limited.
Moshe (31:31):
It really is.
We are in 2024 at the time of this recording,
5783, if you follow the.
But we are still.
So we are still, like.
So we're in the dark in the beginning stages.
There was a. There was an article that I readin the science journal, actually, this morning
(31:53):
while we were waiting for the bus, and it saidsomething to the effect that they took a
square millimeter of the human brain and triedto map it, and they discovered that the amount
of data that fits in that square millimeter isin the trillions upon trillions.
(32:16):
And that if they actually converted the humanbrain to an inorganic data like field, it
would take, I think, something like 147 acresworth of computers to fill that amount of
data.
Leah (32:33):
And then people are complaining because your processor is a little slow.
Moshe (32:37):
Exactly.
Leah (32:37):
It's crazy.
Moshe (32:38):
The human brain, the square millimeter.
A square millimeter of the human brain holds
more data than any computer that exists today.
Leah (32:47):
And it would have to.
It would, because you live for 100 years,
maybe, if you're lucky, and you have toprocess all those memories, all that
information, everything you've learned,languages, you know, people, names, dates,
anyway.
You know.
You know what I'm saying?So one of the things that the geneticists in
the video that we watched discussed was onebenefit of getting genetic testing, they say,
(33:12):
is so that the parents of children with ASDdon't feel guilty about giving them ASD.
So essentially, it says, it's not your faultthat your child has ASD.
It's their genes, or so that they can pin iton the dad instead of the mom, or the mom
instead of the dad.
Or it's nobody, or it's a grandma.
So what were our thoughts on that, Moshe?
Moshe (33:32):
I feel like science is such an important field, and specifically the field of
genetic research, when it comes to discoveringcures for diseases and discovering causes for
conditions, are so important to the future ofmedicine and science and chemistry and all
that stuff.
(33:53):
I don't know that relieving guilt is a worthy
endeavor.
Leah (33:56):
I don't.
Okay, so I produced a child with significant
challenges for autism, and I don't know thatI've ever, like, woken up in the morning and
gone, I feel so guilty about that.
I don't understand the concept.
Moshe (34:10):
Okay, so.
And again, this is a bit of a strange tangent,
but there was a really good video by RabbiLord Jonathan Sacks, who I greatly admire,
blessed memory, because he passed away a fewyears ago, and it was to do with antisemitism.
And as part of the video, anti semitism isanti jewish racism.
By the way, part of the video, they werediscussing why anti semitism exists.
(34:36):
Again, a weird tangent that.
I have a point.
And they said that when it comes to.
When it comes to a negative situation, when it
comes to a negative event, because they'retalking about the origins of antisemitism,
there's two ways you can approach it.
You can say, what can we do about this?
(34:58):
Or who can we blame for this?And when you're looking at a thing like
autism, or you're looking at a thing, likeanything genetic, really.
If you have a parent that has a child who hasautism, there's a lot of resources out there,
(35:18):
especially if it's detected when the child isyoung.
It's very difficult sometimes to detect inbabies until you start reaching milestones or
not reaching them, but it's not true.
Leah (35:30):
They've actually done stuff.
Moshe (35:31):
They do fantastic.
Leah (35:32):
We can look them up and maybe post them somewhere.
But they've done studies where you canactually diagnose autism in babies as young as
a month because they track eye movements, youknow, the whole eye contact thing.
Moshe (35:44):
That's incredible.
I'm really interested, like, advances in
titans.
Leah (35:48):
But again, that's not genetic science.
That's observational science.
Right?ASD is an observational diagnosis.
Moshe (35:54):
So if you have.
Okay, so you have.
You are a new mother or you're a new father,your new parents, and you have a baby, and the
testing like you described is done, and thebaby has now conclusively been, you know,
designated.
This child likely has autism.
There's a number of different ways that youwould react to that news or what you would
(36:19):
take away from that.
And I don't know that it's.
That it's healthy or even responsible topander to the argument that one of their main
priorities is, whose fault is this?Your child has autism.
That's unfortunate.
I mean, I'm sure there's a lot of things we
can do.
What can we do to help them?
(36:40):
What can we do to help support them?What can we do to guide them?
What allowances can we make?What can we do to make their life easier?
Not, oh, they have autism.
Well, is this my fault?
Is this his fault?Whose fault is this?
Leah (36:50):
And again, why.
Why is autism one of those things?
Because it's so not nice.
Could you guys picture again, our baby has
their first asthma attack, and moshe goes,well, this is clearly your fault.
Everybody would say, he's so mean.
So why would.
Why would autism be anything?
Moshe (37:05):
Asthma, typo and taequin, diabetes, anything.
When you're in a position, especially as aparent, where you're essentially blaming your
child's conditions for, you know, on certainthings because, well, okay, so did I do
something wrong?Because, I mean, if you're a new mother,
(37:26):
you're gonna be worried.
Should I drink this?
Should I eat this?Maybe I took a pill.
Leah (37:29):
I shouldn't have taken autism.
Like, you know, the whole vaccine thing, which
has been debunked, by the way.
Please don't write me.
Don't write me.
I don't want to hear about it?
The whole vaccine thing and the whole, oh,well, nurture versus nature and did you expose
your child to mercury?And did you eat tuna while you were pregnant?
Did you drink caffeine?Like, there was a lot of those things around
(37:51):
that tried to blame the mom in the pregnancy.
And the reality is there's some environmental
factors, but the vast majority of it isgenetic.
We just don't understand why.
Moshe (37:59):
And, yeah, and again, as we said at the beginning of the episode, there is a
beneficial reason to do genetic testing,either before the case of.
Of autism being discovered or possibly afterand her daughter came home from school, or if
(38:24):
you're in the case of you have a child and thechild is now out and about and you've
diagnosed them as autistic, you're not.
If you're still at the point where you're
trying to decide whose fault it is, thenthat's not helping you as parents, and it's
certainly not helping the child.
(38:45):
Do you think your child cares whose.
Leah (38:46):
Fault it is that they have autism?
Moshe (38:48):
They don't care.
Leah (38:49):
They just know that that's something I kind of do.
Look at your family members and go, oh, yeah,oh, yeah, that's the autistic one.
That's where you got it from.
We kind of do, but it's more of a fun game we
play.
Moshe (39:00):
Yes, because when you have autism, it's very easy to.
To get to that point where you can kind ofmake light of it.
And it's not to try and diminish or belittleor undermine the fact that being autistic is
oftentimes difficult, sometimes wonder why.
And we're in a great position.
But at the same time, if you are spending somuch time trying to decide whose fault it is
(39:30):
and you're not providing support to yourchild.
Leah (39:33):
Exactly.
Moshe (39:33):
You're not giving your child the needs that it will have, given that it is autistic.
You're just trying to relay your own guilt.
And guilt.
Guilt has no place in a diagnosis.
Leah (39:49):
It really doesn't.
So a few things that actually are useful that
geneticists have found just for people'sinformation is that they have now notice that
autism runs in families.
It's not because of the MMR vaccine.
It's not because mom drank coffee while shewas pregnant.
It's not because you went bungee jumping whenyou were 25.
(40:10):
Whatever.
So they have noticed that full siblings, so
two full siblings together will have a 9.3%chance higher to have autism if their sibling
has autism.
So full siblings, mom and dad.
Say mom and dad, if one has autism, then theother one will have a 9.3 higher chance or ten
(40:33):
times higher chance of autism.
Moshe (40:34):
Almost.
Almost ten times higher chance.
Versus, you know, and for whatever reason.
Leah (40:40):
A maternal half sibling.
So you have the same mom, different dad, you
will have a 5.8% higher chance.
Moshe (40:47):
Right.
Leah (40:48):
A paternal half sibling.
So same dads, different mom, you'll have a
3.9% higher chance.
And even if your cousin is autistic, so first
cousin, you could have a 1.9% higher chance ofhaving an autism diagnosis.
Moshe (41:01):
So that child and another child share the same grandparents.
Exactly, yes.
So there's a link.
So there's definitely a genetic link.
Leah (41:11):
They've also noticed that if you have an older sibling with autism, you have a much
higher risk of having autism yourself.
If the older sibling is a girl, it is an
extremely high chance that any boys followingwill have autism.
Again, they don't know why, but statistically,it's a thing that they've noticed.
Moshe (41:30):
There's definitely something to discuss.
Leah (41:32):
For example, Raya is the oldest child that I've, you know, born, and she's
different.
I don't know.
She's some sort of neuro.
Spicy.
I'm not exactly sure.
And Avro came out like full autism and ADHD,
which we haven't had diagnosed yet.
But a neurologist looked at him and was like,
(41:52):
yeah, so bring him back, because ADHD, andthat is apparently a huge thing.
Whereas if the girl is older and they'reneurospicy or even not, if your older sibling
is a girl, you have a much higher chance ofhaving genetic predisposition to ASD.
Moshe (42:09):
Right.
Leah (42:13):
So let's discuss the three types of testing that they currently do right now.
The first is they do a chromosomal arraytesting.
That means they're looking at the 23chromosomes for mom and 23 from dad and seeing
if there's anything amiss there.
At this point, that's very easy for them to do
because they're quite practiced at it, andit's large chunks.
(42:36):
Right.
You're looking at the whole recipe books or
the whole shelves at the same time.
Moshe (42:40):
That's sort of the array.
The array test is typically how you would
diagnose trisomy 21, because, like I said,it's very easy to see that third set on the.
On the 21st tier.
Leah (42:53):
Then they talk about fragile x. So they check for fragile x chromosome.
Boys are more severely affected by thatbecause they only have one x chromosome.
And if it has it, then they're affected by alot of times a much higher risk of ASD.
And they have learning disabilities andintellectual disabilities.
Other things, the shyness, sometimes someunique.
Moshe (43:17):
Facial features, and girls, because they have the two x chromosomes, it's less
obvious.
It's off.
Like the unhealthy one is offsetting or isoffset by the healthy one, which causes
symptoms, but less severe generally than boys.
Leah (43:36):
And the third one is whole exome sequencing.
So that means they literally go through everygene and they check the spelling of all the
genetic code.
That is the most expensive, the most
extensive, the hardest to get, and it takesthe longest, probably the least useful because
we only know what some of the genes do, right?
Moshe (43:56):
Because you could get a bunch of different hits about certain spelling errors.
We'll call them and, you know, you'll look atthem and go, what does that mean?
I don't know.
Leah (44:08):
So syndromes that can arise from these genetic differences, I don't think we're going
to spend a lot of time on that.
I think we can do maybe a separate video or
write a little article about it or somethingif that interests people, let us know.
The last thing I wanted to talk about is,again, this is one of those why questions.
(44:29):
Why would you bother if you find a gene thatis associated with ASD?
The person actually may not even have ASD, sothey have the gene there and they don't have
it.
I have that, actually, I was contacted after
my genetic testing and asked if I wanted toparticipate in a study because I have a gene
that should theoretically give me 70% chanceof having autism, which clearly I must have
(44:54):
passed on.
Right?
But we don't know.
And if you have no genetic cause, you can
totally have ASD.
Moshe (45:02):
Right?
Leah (45:03):
So we don't even see what the point of looking for it is.
Moshe (45:07):
Right.
Ultimately, some things are worth testing,
again, either because they come with, youknow, significant health issues or drastically
reduced life.
Some things are more.
I don't know.
I think I would.
(45:27):
I would characterize them in the category ofdesigner genes.
Like if you kind of prefer that your child benot autistic or maybe you.
Or if you want your child to have blue eyes orlong eyelashes, you know, you want to.
You want to basically pick and choose what youwant your child to look.
Leah (45:44):
Like, which is illegal, by the way.
I think in most countries maybe all.
Moshe (45:48):
It definitely is.
And if it's not, it should be because there's
no instance whatsoever of the color of yourchild's eyes being a factor in whether or not
you either carry the child to term or you lovethem.
(46:12):
And unfortunately, I do have to bring up thecase of gender selection because it's a big
deal because I come from Canada and mostrecently in British Columbia on the west
coast, and there is a huge instance in thewest coast of not doing certain testing unless
(46:41):
it's absolutely unnecessary.
Absolutely necessary.
Because in certain cultures, and I won't namethem for the sake of not being accused of
being racist or whatever, but there arecertain cultures that definitely favor males
over.
Over girls.
And they went so far as to actually make itagainst the law to tell the parents the gender
(47:06):
of the child because it would increase therisk that they would abort a child if they
were a girl.
Leah (47:13):
Yeah, I don't want to go there, but it's absolutely a thing.
I don't even believe in it.
And gender selection, and again, it's illegal.
I believe in most places.
I think some places you can do it, but I would
have to do research on that.
And then I don't know that I want anybody to
look at my Google history if I did research onit.
Moshe (47:31):
It's definitely a big thing.
And I know that in Canada they're really
trying to restrict it and it already is quiterestricted because needless to say, if you do
genetic testing on a baby, you can easilydetermine what sex it is, obviously.
And they definitely don't want to get into it.
Leah (47:50):
They do have a test.
Now, did you know that when mom is pregnant
and baby is far enough along, they can takemom's blood and sequence the entire baby's
genome?
Moshe (47:58):
Interesting.
Leah (47:59):
Yeah. So you can see everything.
And it puts a lot of people at ease because
they do test for a lot of the bad stuff beforebaby's even big enough to see on the
ultrasound.
But also.
Moshe (48:11):
Right, because it's not.
It's, again, one of those things where you're
like, okay, the baby's there.
Does it really matter?
Unless it's something that could significantlyimpact their life.
Leah (48:23):
Now we're getting into a pro choice talk, which I'm happy to talk about again,
separately.
Enough interest would have to be shown in
order for me to do that.
I'm going to go out on record here and say
that I am pro choice.
I have interesting theories about what choices
I would make and willing to talk about themreligiously.
Moshe (48:43):
You really can't help but be pro choice because if you are of the mind that every life
is sacred and every child is important, thenthey have to be allowed to thrive in whatever
capacity they can.
(49:03):
But ultimately the child is.
We don't believe in suffering, part of our,part of the mother.
And I mean, again, I'm not going to get intoit, but if the mother determines that the
baby's at risk of suffering, then obviously wehave to consider those sorts of things.
But again, that's a great conversation that wecan certainly get into if enough interested
(49:26):
is.
But otherwise, we'll try to stay away from the
abortion debate as much as possible.
Leah (49:33):
Okay, so with our last ten minutes, let's talk about our actual experience.
So they already know.
I said twice that I had a bunch of blood
drawn, and they did genetic testing.
And then because we said the words autism, we
just said them in the office.
While they were deciding which blood test to
run on me, we were summoned to a geneticcounselor.
We walked into the room, and you actually hada very interesting thought process about it
(49:59):
before we went, because he said, well, havingASD is really hard for me, honey.
If we can not have a kid with ASD, that wouldbe a good thing.
That was actually what you said to me beforewe went.
After we went in there, after hearing what thegeneticist had to say, moshe changed his mind
drastically and quickly.
I was always of the mind that it's not the
(50:21):
type of thing that I want to test for, becauseit's not the type of thing I'd want to exclude
or get rid of.
But he had a different opinion.
So we sat down, right?And the genetic counselor looked directly at
you and then asked a whole bunch of, like,really invasive and inappropriate questions.
(50:42):
Right?Are you healthy?
What do they define as healthy?Somebody with no genetic predisposition to it?
And of course, you have to answer no. And oncethe autism thing came up, that was all she
thought about.
I was the mom literally sitting there going,
I'm the one who's going to be pregnant.
I was trying to interject.
I have these genetic issues.
(51:02):
Would you like to look at them?
And she was like, no, let's talk about autismfor 4 hours.
And then she definitely said, you know, well,based on what I'm seeing, he has a very strong
history of passing on autism, and are you surethat you want to do this?
And, you know, we do have a possibility oflooking at any zygotes that you produce in.
(51:23):
You know, she didn't say the words, but itcame through as deleting any mistakes that
might be there.
And that's when you sort of looked at me and
said, honey, I'm not a mistake.
And I said, I know I told you.
And I think we kindly on my part, kindly onhis part not so kindly told the geneticists
that we're done now.
And if this isn't a necessary thing to do in
(51:45):
order for us to have a baby, we would like tobasically, yes.
Moshe (51:51):
The idea of creating a child, if you have the option that is not autistic, you
know, it was tempting to.
Leah (52:00):
You for, like, 3.5 seconds.
Moshe (52:02):
It may be preferable on the surface, but deep down, you really do have to consider
the fact that we're talking about an actual,you know, life potential.
And it's the difference between being able togo in and, like, switch off the autism in a
(52:27):
particular zygote and just being like, well,no, because that's what we're talking about.
We're not talking about just, like, doingsomething.
And then, oh, they're not autistic anymore.
Leah (52:37):
I'm more the sciency one.
So Moshe didn't understand, and when she.
He didn't understand what they meant by it,and when she explained that they would be
creating zygotes.
Right.
So creating life basically, essentiallybabies, not to full term or anything, and
throwing them away, he was horrified.
Moshe (52:55):
Yeah.
Leah (52:56):
It's because we don't have the ability to turn on and off jeans.
Right.
But you didn't know that.
Moshe (53:00):
I'm not as familiar with science, so I wasn't clear on what we were talking about.
And when I was clear on it, I'm definitely ofthe mind that every life is important,
especially if it's, like, from me.
Like, I don't think that any part of me should
be thrown away because it's a little bit off.
Yeah.
Leah (53:21):
So, yeah, he looked at me and said, honey, I'm not a mistake.
And I said, honey, I agreed before we evencame in here.
And then we said to her, can we still proceedif we don't do all here?
Because she wanted to do all kinds of testingon you to see if they could find a gene that
they could, you know, use to select for thebest embryos, et cetera, et cetera.
And we said, is it necessary?She said, no, you'll just have to sign a
(53:43):
waiver.
And we said, okay, bye.
Moshe (53:45):
Yes, I would gladly sign a waiver that said that I'm aware that my child has a good
chance of being autistic.
Like, oh, well, you know, whatever.
Leah (53:55):
Them just living in my uterus, they have a good chance of being autistic because
there's an oldest female sibling and theirolder brother is profoundly autistic, you.
Moshe (54:05):
Know, oh, well, you know, we're in for the ride, and it's it's going to be a really
awesome journey and we definitely look forwardto involving all of you on it with us,
depending on how things go and what happened.
But yeah, so this is another episode.
(54:26):
We're really, really going to try to stick toa Sunday recording schedule and little
content.
So if you haven't had a chance to check out
our TikTok or our Instagram or Facebook, thenI would advise you to go do that.
There's a lot of really funny stuff that Leahand I put up, a lot of stuff involving the
(54:46):
kids.
We're still going to try and figure out a way
to involve the kids in some way in thepodcast.
Leah (54:53):
And I mean, they heard Ryan come home today.
Moshe (54:55):
They did.
She was already, it was her debut on.
You can email us at contact us at 99autistic.com.
You can search for 99 autistic on YouTube, onApple Music, on Spotify, on pot chaser, on
iHeartRadio.
Leah (55:13):
And it really helps us a lot, actually, when you just listen, download, share rate,
interact with the podcast in any.
Moshe (55:19):
Way on our podbean homepage, of course.
Leah (55:21):
And also check out our Patreon.
I mean, it does allow us to do more of this
content.
Moshe (55:26):
We do have the ability to have you, you know, tip us or donate to us if you want.
It's on the website.
It can be a little, or it can be a lot.
It doesn't really matter.
There's some little gifts and stuff that I put
up for people that give a certain amount.
But honestly, if you like what we're saying
and you want us to keep saying it, itdefinitely helps.
(55:48):
But, but we're going to try and keep it as, assimplified as possible.
So thank you very much for listening today andenjoy the pleasant sounds of our outro.
Well, that's our show for today.
(56:09):
Now, you know, one autistic just a little bit
better.
So something you may not know about some
autistics is that we often struggle withending social interactions.
So layup.
Leah (56:24):
All right, Moshaw, I'll take care of it.
Thank you for listening to now, you know, one
autistic.
See you next week.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Nikki Glaser Podcast
Every week comedian and infamous roaster Nikki Glaser provides a fun, fast-paced, and brutally honest look into current pop-culture and her own personal life.