Now You Know One Autistic! Podcast
1
00:00:11,840 --> 00:00:13,982
Moshe: Hi, I'm Moshe, and I'm autistic.
2
00:00:14,118 --> 00:00:16,094
Leah: I'm Leah, and I'm boring.
3
00:00:16,254 --> 00:00:18,198
Moshe: Welcome to now you know one autistic.
4
00:00:18,286 --> 00:00:22,550
Leah: A podcast about neurodiversity in
couples, marriage meltdowns, and making it all
5
00:00:22,582 --> 00:00:23,086
work.
6
00:00:23,230 --> 00:00:27,734
Moshe: The opinions expressed in this podcast
reflect the experience of one couple and one
7
00:00:27,774 --> 00:00:28,750
autistic.
8
00:00:28,942 --> 00:00:32,622
Leah: Nothing that you hear in this podcast
should be taken as a medical opinion.
9
00:00:32,758 --> 00:00:37,014
And unless otherwise stated, no one is an
accredited specialist in any of the many
10
00:00:37,054 --> 00:00:39,278
fields that comprise the autism spectrum.
11
00:00:39,406 --> 00:00:44,166
Moshe: But as someone who is on the autism
spectrum, I feel that my experiences will be
12
00:00:44,190 --> 00:00:45,838
very valuable to many of you.
13
00:00:45,966 --> 00:00:47,830
Whether you're on the spectrum, a support
14
00:00:47,902 --> 00:00:51,190
person like Leah, or just a curious bystander.
15
00:00:51,382 --> 00:00:55,046
Leah: If you think that you or someone you
care about may be autistic, consult your
16
00:00:55,070 --> 00:00:56,114
family doctor.
17
00:01:03,174 --> 00:01:04,222
Hi, Moshe.
18
00:01:04,358 --> 00:01:05,270
Hi, Leah.
19
00:01:05,422 --> 00:01:06,502
How are you today?
20
00:01:06,678 --> 00:01:07,390
Moshe: I'm great.
21
00:01:07,502 --> 00:01:08,198
How are you?
22
00:01:08,286 --> 00:01:09,046
Leah: I'm right.
23
00:01:09,190 --> 00:01:13,342
So we're going to be doing an episode about
24
00:01:13,398 --> 00:01:17,822
something that we actually went through
recently and how we feel about it.
25
00:01:17,958 --> 00:01:23,070
So what we're talking about is genetic testing
for autism spectrum disorder and related
26
00:01:23,142 --> 00:01:31,098
disorders, and genetic testing, pre pregnancy
and pre IVF in general, I suppose, will be one
27
00:01:31,106 --> 00:01:32,414
of those things as well.
28
00:01:33,754 --> 00:01:36,882
Before we get into the meat of our experience,
29
00:01:37,018 --> 00:01:38,594
which was interesting.
30
00:01:38,634 --> 00:01:40,694
It wasn't bad, but it was up and down.
31
00:01:41,794 --> 00:01:47,242
We're going to talk about genetic testing in
general and genetic testing for ASD, just so
32
00:01:47,258 --> 00:01:48,714
people have an idea of what it is.
33
00:01:48,834 --> 00:01:51,066
Before we get into when we had to sit down
34
00:01:51,090 --> 00:01:53,618
with a genetic counselor and how that was
traumatizing.
35
00:01:53,786 --> 00:01:54,462
Moshe: Right.
36
00:01:54,618 --> 00:01:58,238
Genetic testing is something that, I mean,
37
00:01:58,326 --> 00:02:03,670
unless you know that you have a specific
condition or you know that your family has a
38
00:02:03,702 --> 00:02:09,598
specific condition, it really only comes up
when you are trying to have a baby, because
39
00:02:09,766 --> 00:02:16,446
when you are with a partner and you decide to
do the thing where you sort of combine your
40
00:02:16,470 --> 00:02:20,394
DNA, that's generally how babies happen.
41
00:02:20,714 --> 00:02:21,458
Leah: Did you know?
42
00:02:21,546 --> 00:02:22,362
Moshe: I did know.
43
00:02:22,498 --> 00:02:24,134
I have a sneaking suspicion.
44
00:02:25,474 --> 00:02:29,534
I just really like your smile, so the rest is
just kind of a bonus.
45
00:02:30,514 --> 00:02:36,978
But the genetic testing thing often comes up
in the case of trying to have a baby, because
46
00:02:37,066 --> 00:02:44,266
the question that a lot of the people ask is,
do you know if you have a family history of
47
00:02:44,290 --> 00:02:49,912
this or if you have a family history of that?
Leah and I are both Ashkenazi Jews on our
48
00:02:49,928 --> 00:02:50,784
mother's side.
49
00:02:50,944 --> 00:02:54,648
So with our particular line, there's
50
00:02:54,736 --> 00:02:59,064
definitely a higher instance of certain
genetic conditions.
51
00:02:59,144 --> 00:03:05,160
But it's really only in the case of people who
have, like, two parents who are Ashkenazi
52
00:03:05,192 --> 00:03:08,088
Jews, which we don't.
53
00:03:08,256 --> 00:03:11,912
Leah: So when you're trying to have a baby,
what they'll generally do is they'll test mom
54
00:03:11,968 --> 00:03:12,904
for all kinds of stuff.
55
00:03:12,944 --> 00:03:13,384
Right?
56
00:03:13,504 --> 00:03:16,644
So they tested me for the Ashkenazi Jew
diseases.
57
00:03:17,034 --> 00:03:23,210
You know, one very prominent one, or used to
be prominent, is tay sachs, which they always
58
00:03:23,242 --> 00:03:27,054
check Ashkenazi juice for before they have
babies, or they try to.
59
00:03:27,834 --> 00:03:34,214
They tested me for, you know, genetic
mutations that cause breast cancer and
60
00:03:35,034 --> 00:03:35,650
cervical.
61
00:03:35,722 --> 00:03:37,370
Or was it ovarian cancer?
62
00:03:37,442 --> 00:03:38,258
Moshe: Ovarian cancer.
63
00:03:38,306 --> 00:03:39,294
Leah: I don't have those.
64
00:03:39,754 --> 00:03:41,442
They suspect you have it on your side, but
65
00:03:41,458 --> 00:03:44,776
they haven't checked you because, well, the
lack of ovaries, it would.
66
00:03:44,800 --> 00:03:48,512
Moshe: Really only be girls that, I mean.
67
00:03:48,528 --> 00:03:49,616
Leah: You can carry the jeans.
68
00:03:49,720 --> 00:03:50,312
Moshe: You can.
69
00:03:50,408 --> 00:03:52,768
But if you have a daughter, they could.
70
00:03:52,856 --> 00:03:59,688
It could be affected by it, or if you have a
son, who in turn has a daughter.
71
00:03:59,736 --> 00:04:03,296
So if you have a granddaughter, they could
carry the gene, because, of course, the boy
72
00:04:03,320 --> 00:04:06,576
would pass it along to another boy, who would
pass it along to a girl.
73
00:04:06,720 --> 00:04:10,680
And you could be wondering, why am I at a
higher instance of not just ovarian cancer,
74
00:04:10,752 --> 00:04:13,484
but anything?
And then they can trace the line back.
75
00:04:13,784 --> 00:04:17,856
Leah: The reason we're saying that is because
Moshe's mother, who we love very much, passed
76
00:04:17,880 --> 00:04:19,104
away from ovarian cancer.
77
00:04:19,144 --> 00:04:21,392
So it might be on his side, but his sister
78
00:04:21,448 --> 00:04:22,280
doesn't have it.
79
00:04:22,392 --> 00:04:24,640
So anyway, they didn't find it worth testing
80
00:04:24,672 --> 00:04:25,264
him for.
81
00:04:25,384 --> 00:04:28,576
So what they'll generally do is test mom,
82
00:04:28,640 --> 00:04:30,456
which they did a battery of tests on me.
83
00:04:30,480 --> 00:04:32,200
Those were the two that I can think of right
84
00:04:32,232 --> 00:04:32,400
now.
85
00:04:32,432 --> 00:04:35,304
But they did also the general ones, you know,
86
00:04:35,464 --> 00:04:40,970
trisomy, which is for down syndrome, and spina
bifida.
87
00:04:41,002 --> 00:04:43,082
Not spina bifida, but muscular dystrophy.
88
00:04:43,138 --> 00:04:43,394
Sorry.
89
00:04:43,434 --> 00:04:45,050
Spina bifida is not genetic.
90
00:04:45,082 --> 00:04:46,194
It's a malformation.
91
00:04:46,274 --> 00:04:47,074
Moshe: Folic acid.
92
00:04:47,154 --> 00:04:47,874
Folic acid.
93
00:04:47,914 --> 00:04:48,546
Leah: Folic acid.
94
00:04:48,610 --> 00:04:50,370
So they did, you know, all that stuff, they
95
00:04:50,402 --> 00:04:54,334
looked for proteins in my blood cells and all
that other stuff.
96
00:04:54,754 --> 00:04:58,074
They didn't find it necessary to test moshe
for anything.
97
00:04:58,234 --> 00:05:03,014
But they were very interested in his autism
and adhd diagnoses.
98
00:05:03,974 --> 00:05:08,326
And the third thing that can happen is when
you either have an embryo or a baby, they can
99
00:05:08,350 --> 00:05:10,590
test the embryo or baby as well.
100
00:05:10,702 --> 00:05:13,214
We don't have either of those at the moment.
101
00:05:13,254 --> 00:05:15,874
I mean, we have older babies.
102
00:05:16,534 --> 00:05:18,878
And Riah has had genetic testing for other
103
00:05:18,926 --> 00:05:19,514
things.
104
00:05:21,974 --> 00:05:24,414
So that is how that generally will go.
105
00:05:24,454 --> 00:05:31,656
So I've had a battery genetic test at this
point, can genetic testing, or, sorry, it's
106
00:05:31,680 --> 00:05:34,600
done through blood, by the way, just for those
who really have no idea.
107
00:05:34,712 --> 00:05:39,656
They draw a whole bunch of blood, and they
look at your DNA or specific parts of your DNA
108
00:05:39,680 --> 00:05:41,684
that they know cause certain disorders.
109
00:05:42,264 --> 00:05:47,124
Moshe: There are genetic testing that they do
through saliva or through a cheek swab.
110
00:05:47,504 --> 00:05:52,184
You might have seen the commercials for, like,
23 andme and ancestry.com dot.
111
00:05:52,224 --> 00:05:53,168
Leah: I get ancestry.
112
00:05:53,256 --> 00:05:59,500
Moshe: And that does some testing of genetics.
113
00:05:59,692 --> 00:06:03,980
But the really conclusive, like, targeted
114
00:06:04,052 --> 00:06:07,500
genetic testing does have to be through blood
tests, because you.
115
00:06:07,532 --> 00:06:12,844
You can tell, for example, by testing
somebody's genetics through, like, a cheek
116
00:06:12,884 --> 00:06:17,748
swab, their matrilineal line, their
patrilineal line, if they're a high instance
117
00:06:17,796 --> 00:06:22,740
for having wet earwax or, like, unnecessary
but interesting how much Neanderthal.
118
00:06:22,772 --> 00:06:24,116
How much Neanderthal you are.
119
00:06:24,140 --> 00:06:25,476
That was going to say that one.
120
00:06:25,620 --> 00:06:29,284
Like, if you're related to Genghis khan or
something, but not.
121
00:06:29,324 --> 00:06:35,516
But if you want to know, like, if your child
or if you yourself carry genes, blood tests
122
00:06:35,540 --> 00:06:36,756
are really the way to go.
123
00:06:36,820 --> 00:06:37,380
Just to be sure.
124
00:06:37,412 --> 00:06:38,180
Leah: I did the ancestry.
125
00:06:38,212 --> 00:06:43,372
It showed literally 50% to 51% Ashkenazi and a
126
00:06:43,388 --> 00:06:44,076
bunch of other stuff.
127
00:06:44,100 --> 00:06:46,444
So, you know, french and italian and other
128
00:06:46,484 --> 00:06:46,852
things.
129
00:06:46,948 --> 00:06:49,452
I was curious about the other parts that I
130
00:06:49,468 --> 00:06:50,024
knew.
131
00:06:51,164 --> 00:06:52,540
So that was just for fun, though.
132
00:06:52,572 --> 00:06:54,342
That doesn't really diagnose anything.
133
00:06:54,428 --> 00:06:57,266
Moshe: Yeah, I mean, if you're into genealogy
or whatever, it's kind of nice to see where
134
00:06:57,290 --> 00:06:57,842
you come from.
135
00:06:57,898 --> 00:07:00,442
Or if you're adopted and you don't really know
136
00:07:00,458 --> 00:07:02,574
your birth parents, you might want to track
them down.
137
00:07:03,194 --> 00:07:12,058
Or if you are, you know, if you're looking for
relatives, you can pay some money and stick a
138
00:07:12,226 --> 00:07:17,378
swab inside your cheek and send it to a bunch
of people in a lab, and they can find your
139
00:07:17,426 --> 00:07:22,986
fifth cousin, once removed, who lives in some
country, introduces you to a great, great,
140
00:07:23,090 --> 00:07:25,418
great grand relative that you never knew
existed.
141
00:07:25,506 --> 00:07:26,570
Leah: So we're kind of rambling.
142
00:07:26,642 --> 00:07:27,594
I just want to verify.
143
00:07:27,634 --> 00:07:30,882
So Moshe and I have both done the 23 andme and
the ancestry for fun.
144
00:07:30,938 --> 00:07:32,186
That doesn't diagnose anything.
145
00:07:32,250 --> 00:07:36,106
Moshe: Yes. So the actual instance is sort of
getting back on topic.
146
00:07:36,290 --> 00:07:41,346
We engaged in genetic testing because we're
looking to increase our family.
147
00:07:41,530 --> 00:07:46,574
And, of course, Leah and I want to get the
testing done to.
148
00:07:47,204 --> 00:07:49,116
Well, let's backpedal that.
149
00:07:49,140 --> 00:07:50,700
We didn't actually want to get the testing
150
00:07:50,732 --> 00:07:50,876
done.
151
00:07:50,900 --> 00:07:51,236
It was.
152
00:07:51,300 --> 00:07:54,404
We were asked to get it done by the people
that we were Israel.
153
00:07:54,444 --> 00:07:57,584
Leah: That's kind of required because we're of
a certain age.
154
00:07:57,884 --> 00:07:58,260
Yeah.
155
00:07:58,292 --> 00:08:00,516
Moshe: Leah's a little bit on the older side.
156
00:08:00,700 --> 00:08:02,460
Still gorgeous, like.
157
00:08:02,572 --> 00:08:03,948
Like a fine wine.
158
00:08:04,076 --> 00:08:04,984
Leah: Thank you.
159
00:08:05,364 --> 00:08:09,868
Moshe: And I am like a different kind of wine.
160
00:08:09,996 --> 00:08:11,860
Anyway, the wine analogy doesn't work.
161
00:08:11,972 --> 00:08:15,852
But the point is, because of our age, which
isn't that big a deal in Israel, because
162
00:08:15,908 --> 00:08:18,796
people continue to have children until they're
physically not able to.
163
00:08:18,860 --> 00:08:20,220
Leah: But they like to do tests.
164
00:08:20,252 --> 00:08:24,852
Moshe: They want to know, just so you know,
what the chances are.
165
00:08:24,868 --> 00:08:31,380
And of course, they test for a variety of
genetic conditions, or what they suspect are
166
00:08:31,412 --> 00:08:32,956
conditions that have genetic links.
167
00:08:32,980 --> 00:08:36,492
Which brings us to the topic of the episode
168
00:08:36,508 --> 00:08:36,732
today.
169
00:08:36,788 --> 00:08:36,980
Leah: Right.
170
00:08:37,012 --> 00:08:39,020
So that is the medical testing that we've
171
00:08:39,052 --> 00:08:40,116
done, mostly me.
172
00:08:40,180 --> 00:08:44,949
So I had nine or ten vials of blood taken, and
173
00:08:45,101 --> 00:08:48,325
that is more of a diagnostic thing in terms of
that.
174
00:08:48,349 --> 00:08:50,229
So if mom has issues, then they'll check dad.
175
00:08:50,261 --> 00:08:52,133
If dad and mom have issues, then they'll check
176
00:08:52,173 --> 00:08:56,713
baby or fetus or embryo or zygote.
177
00:08:57,173 --> 00:09:00,893
Moshe: And we had some conversations which
we'll get into.
178
00:09:00,973 --> 00:09:02,233
Leah: We'll get into it.
179
00:09:02,813 --> 00:09:05,229
So my first question to you, Moshe, is can
180
00:09:05,261 --> 00:09:07,233
genetic testing diagnose ASD?
181
00:09:08,053 --> 00:09:11,494
Moshe: The answer to that question is
possibly.
182
00:09:11,794 --> 00:09:15,370
Leah: So the answer to that question from my
research is probably not.
183
00:09:15,482 --> 00:09:17,978
Yes, at best.
184
00:09:18,066 --> 00:09:26,690
Moshe: Sometimes they can detect some genetic
links that might lead to a higher instance of
185
00:09:26,762 --> 00:09:33,322
people developing ASD, but they can't
definitively state this gene here causes
186
00:09:33,378 --> 00:09:34,058
autism.
187
00:09:34,226 --> 00:09:39,338
Leah: So they will never actually diagnose
autism based on their genetic or blood tests,
188
00:09:39,386 --> 00:09:39,974
ever.
189
00:09:40,274 --> 00:09:42,674
Not without it being in conjunction with the
190
00:09:42,754 --> 00:09:44,666
formal testing which you and Avram have both
had.
191
00:09:44,690 --> 00:09:44,826
Right.
192
00:09:44,850 --> 00:09:47,714
So the 802 that you filled out and the other
193
00:09:47,754 --> 00:09:52,394
diagnostic tests that you filled out and the
tests for ADHD and stuff, which are written
194
00:09:52,434 --> 00:09:55,626
tests which you're supposed to do partially on
your own, partially with your partner or
195
00:09:55,650 --> 00:09:56,490
parent if you have one.
196
00:09:56,522 --> 00:09:57,826
Because sometimes we're not the best at
197
00:09:57,850 --> 00:10:01,754
knowing how we actually act or feel about
things.
198
00:10:01,834 --> 00:10:08,502
Moshe: Autism is weird, though, because unlike
some other genetic conditions, because if a
199
00:10:08,518 --> 00:10:15,594
child is in utero or a child is newly born or
a child is developing, you can look at them
200
00:10:15,934 --> 00:10:25,034
sometimes and go, well, that baby has trisomy,
that baby has this, that baby has something.
201
00:10:25,534 --> 00:10:27,950
There's definitely something going on with
that baby.
202
00:10:28,062 --> 00:10:33,212
But autism is one of those conditions that
they label as invisible in that you could look
203
00:10:33,228 --> 00:10:38,100
at a baby and you can't definitively look at
the baby and go, you see right there, that
204
00:10:38,172 --> 00:10:39,148
autism right there.
205
00:10:39,236 --> 00:10:43,940
Leah: So that's why essentially, you need the
written tests combined with somebody actually
206
00:10:44,012 --> 00:10:44,676
observing you.
207
00:10:44,700 --> 00:10:46,220
So somebody who's trained in this.
208
00:10:46,252 --> 00:10:48,492
Right?
So either a neurologist or psychologist or a
209
00:10:48,508 --> 00:10:54,396
psychiatrist or a therapist, or in the case of
Avram, a developmental pediatrician which is
210
00:10:54,420 --> 00:11:02,210
an extremely specialized specialty, and they
will diagnose you with autism spectrum
211
00:11:02,242 --> 00:11:04,614
disorder and often ADHD as well.
212
00:11:05,714 --> 00:11:11,058
And then they can investigate genetic reasons.
213
00:11:11,226 --> 00:11:17,570
But our question ultimately is why?
Because once you've been diagnosed with
214
00:11:17,602 --> 00:11:25,234
autism, they're sort of very early on in terms
of defining which genes actually might cause
215
00:11:25,274 --> 00:11:25,938
autism.
216
00:11:26,106 --> 00:11:28,306
And even if you find them, it's not going to
217
00:11:28,330 --> 00:11:31,242
improve your quality of life, your treatment,
or find a cure.
218
00:11:31,418 --> 00:11:38,930
So ultimately, we feel like the genetic
investigation of autism is essentially for the
219
00:11:38,962 --> 00:11:41,534
curiosity of the scientists who are doing it.
220
00:11:41,914 --> 00:11:48,570
Moshe: And there's a few things that we saw or
read about in terms of some of the testing
221
00:11:48,602 --> 00:11:51,146
that was done and the reasons behind it.
222
00:11:51,330 --> 00:11:52,594
Leah: There are some useful ones.
223
00:11:52,634 --> 00:11:56,170
So if they can diagnose a syndrome that has
224
00:11:56,202 --> 00:12:00,876
ASD as one of the symptoms, then it can
absolutely help the treatment of that person,
225
00:12:00,940 --> 00:12:03,784
because those often come with other health
problems.
226
00:12:04,164 --> 00:12:08,188
Right?
So, like heart problems or, you know, walking
227
00:12:08,236 --> 00:12:09,780
problems or whatever.
228
00:12:09,932 --> 00:12:11,980
So there are a few syndromes that tend to have
229
00:12:12,012 --> 00:12:18,724
ASD as a symptom or a much higher level of ASD
within them, and those can be determined
230
00:12:18,764 --> 00:12:19,172
genetically.
231
00:12:19,228 --> 00:12:22,612
But just for your garden variety ASD, I don't
232
00:12:22,628 --> 00:12:22,780
know.
233
00:12:22,812 --> 00:12:24,588
We're not so sure how we feel about that.
234
00:12:24,716 --> 00:12:33,516
Moshe: Yes, because ASD is interesting in that
it's a condition, or if you use the actual
235
00:12:33,580 --> 00:12:38,364
term, it's a disorder, but it's also a symptom
of other disorders.
236
00:12:38,524 --> 00:12:48,036
Or like Leah says, it's a. There's certain
other syndromes, genetically caused syndromes
237
00:12:48,100 --> 00:12:54,540
that allow a person to have a very high or
almost, you know, inevitable diagnosis of
238
00:12:54,572 --> 00:12:55,196
autism.
239
00:12:55,340 --> 00:12:58,380
And if you can identify autism from a genetic
240
00:12:58,412 --> 00:13:03,820
component, and you know that this child has
this syndrome, which also comes with physical
241
00:13:03,892 --> 00:13:09,612
things or predispositions for kidney issues or
heart issues or digestive issues, and you can
242
00:13:09,628 --> 00:13:10,356
go, okay, then.
243
00:13:10,380 --> 00:13:12,004
Leah: You can test the heart and the kidneys.
244
00:13:12,084 --> 00:13:13,164
Moshe: That kid is autistic.
245
00:13:13,204 --> 00:13:15,052
But also they have this, which means we have
246
00:13:15,068 --> 00:13:16,612
to check these things, which.
247
00:13:16,668 --> 00:13:21,224
Leah: Is the only reason we honestly found,
after really looking into it, that we thought
248
00:13:21,264 --> 00:13:25,604
was even somewhat necessary for genetic
testing for ASD.
249
00:13:27,664 --> 00:13:33,424
Another reason why we find it so unnecessary
is because there are currently 1000 single
250
00:13:33,464 --> 00:13:36,856
genes and 17 genetic regions.
251
00:13:36,920 --> 00:13:38,816
So when you talk about genetic regions, I
252
00:13:38,840 --> 00:13:45,400
believe they're talking about, help me here,
not genes, but chromosomes.
253
00:13:45,472 --> 00:13:50,120
They're talking about chromosomes that have
been associated with ASD.
254
00:13:50,312 --> 00:13:56,296
Therefore, if you can find a thousand of
something that may or may not cause something,
255
00:13:56,440 --> 00:13:59,124
is it actually really that useful to you?
256
00:14:00,464 --> 00:14:06,124
Moshe: It's really one of those instances
going back to the analogy of ancestry.com,
257
00:14:06,944 --> 00:14:15,210
where you run your genetics through their
filter and you go, well, this particular
258
00:14:15,322 --> 00:14:23,610
person has, you know, a certain percentile of
shared chromosomes or genes or whatever with
259
00:14:23,642 --> 00:14:24,146
you.
260
00:14:24,290 --> 00:14:26,346
So it's quite likely that they're a cousin of
261
00:14:26,370 --> 00:14:27,130
yours.
262
00:14:27,322 --> 00:14:29,874
And your answer to that would be, oh,
263
00:14:29,994 --> 00:14:30,626
interesting.
264
00:14:30,690 --> 00:14:32,530
And then that's really, that's really
265
00:14:32,562 --> 00:14:33,090
inaccurate.
266
00:14:33,122 --> 00:14:36,074
Leah: Because I have an aunt who I know is my
aunt, right.
267
00:14:36,154 --> 00:14:38,746
And genetically they said she is a close
relative of yours.
268
00:14:38,770 --> 00:14:40,882
She might be your aunt, your sister, or your
mother.
269
00:14:41,018 --> 00:14:41,554
Moshe: Right.
270
00:14:41,674 --> 00:14:42,218
Leah: So it's.
271
00:14:42,266 --> 00:14:45,130
It's. It's not like a targeted thing, the way
272
00:14:45,162 --> 00:14:47,802
people think or the way they show it in the
movies.
273
00:14:47,898 --> 00:14:50,218
Moshe: It's kind of like a shotgun versus a
laser.
274
00:14:50,346 --> 00:14:58,490
You kind of have a whole range of potentials
versus a. This is 100% unreservedly the case.
275
00:14:58,602 --> 00:15:03,834
Leah: So as of 2022, only three to 40% of
people will get a genetic diagnosis.
276
00:15:03,954 --> 00:15:05,754
So they've already done the eight O's, two.
277
00:15:05,834 --> 00:15:07,802
They've already done, you know, being seen by
278
00:15:07,818 --> 00:15:08,498
a neurologist.
279
00:15:08,546 --> 00:15:10,602
They've already gotten that diagnosis on
280
00:15:10,618 --> 00:15:16,556
paper, and then they'll look at their genes,
and only three to 40% of those people will
281
00:15:16,580 --> 00:15:18,420
they find a genetic diagnosis.
282
00:15:18,532 --> 00:15:19,020
Moshe: Right.
283
00:15:19,132 --> 00:15:21,820
Leah: Now, does that mean they don't have a
genetic predisposition?
284
00:15:21,932 --> 00:15:28,424
No. What it means is that currently genetics
is very limited.
285
00:15:29,284 --> 00:15:31,484
They don't actually know what they're looking
for.
286
00:15:31,524 --> 00:15:35,956
So if you don't look at the part of the genes
or the chromosomes that are causing the
287
00:15:35,980 --> 00:15:37,674
issues, then you're not going to see it.
288
00:15:37,804 --> 00:15:40,166
So it's going to come up as a non test or a
289
00:15:40,190 --> 00:15:40,950
negative test.
290
00:15:41,062 --> 00:15:42,206
It doesn't mean it's not there.
291
00:15:42,230 --> 00:15:44,958
It just means they can't find it or they don't
know what they're looking for.
292
00:15:45,006 --> 00:15:45,238
Right.
293
00:15:45,286 --> 00:15:53,142
Moshe: And that's why we actually saw a video
that said that if you don't get a diagnosis of
294
00:15:53,158 --> 00:15:59,470
a genetic, genetic autism, then you actually
can come back in a few years and test again.
295
00:15:59,622 --> 00:16:06,720
Because they are still so early in the stages
of identifying genetic links to autism that
296
00:16:06,792 --> 00:16:08,800
constantly new research is being.
297
00:16:08,872 --> 00:16:10,056
Is being reached.
298
00:16:10,160 --> 00:16:15,296
And today they might say, you don't have a
genetic link to autism, but then in ten years
299
00:16:15,320 --> 00:16:21,200
they might go, oh, see, that gene is what we
now know causes, you know, causes autism, but
300
00:16:21,272 --> 00:16:22,224
it's not there.
301
00:16:22,384 --> 00:16:22,864
Leah: So you're.
302
00:16:22,904 --> 00:16:27,232
Moshe: It's. It's, for lack of a better term,
a **** shoot, because you never know if the,
303
00:16:27,288 --> 00:16:32,062
the negative you're getting is a definitive no
or if it's a not right now type of thing.
304
00:16:32,158 --> 00:16:32,662
Leah: Exactly.
305
00:16:32,718 --> 00:16:34,222
Either way, it's not a no, because if a
306
00:16:34,238 --> 00:16:37,486
psychiatrist has diagnosed you with ASD, you
have ASD.
307
00:16:37,670 --> 00:16:41,702
If you meet the criteria, you have it,
regardless of whether your genes say you do or
308
00:16:41,718 --> 00:16:42,206
not.
309
00:16:42,350 --> 00:16:48,374
Moshe: And that is essentially what they told
me because I have a formal diagnosis of
310
00:16:48,494 --> 00:16:51,354
autism, of ASD and ADHD.
311
00:16:51,654 --> 00:16:54,958
And then when we start talking about genetic
312
00:16:55,006 --> 00:16:57,534
testing, it was like, okay, so you have your
diagnosis.
313
00:16:57,574 --> 00:16:58,512
That's wonderful.
314
00:16:58,678 --> 00:17:00,764
You should probably also investigate your
315
00:17:00,804 --> 00:17:04,184
genetic links that might have caused your
autism.
316
00:17:04,684 --> 00:17:09,564
And we had a discussion about it, and again,
it really came back to the question of why,
317
00:17:09,724 --> 00:17:10,588
what's the point?
318
00:17:10,676 --> 00:17:11,436
Leah: And the answer.
319
00:17:11,500 --> 00:17:14,356
So geneticists don't like to say this, okay?
320
00:17:14,500 --> 00:17:17,292
They will sit with you and they will say,
well, it's for your health.
321
00:17:17,348 --> 00:17:20,748
It's to make sure for your general health,
it's to see for the health of your offspring.
322
00:17:20,796 --> 00:17:23,516
It's to see family stuff.
323
00:17:23,700 --> 00:17:25,996
And then eventually they'll start using terms
324
00:17:26,060 --> 00:17:27,645
like family planning.
325
00:17:27,819 --> 00:17:29,777
And then eventually, if you push them enough,
326
00:17:29,825 --> 00:17:35,377
they will tell you, so that you could exclude
embryos or so that you could decide whether
327
00:17:35,425 --> 00:17:41,561
you really want to mix those genetics together
to see, you know, if the baby is going to be
328
00:17:41,617 --> 00:17:42,993
functional, you know, healthy.
329
00:17:43,033 --> 00:17:44,545
They like to use the word healthy.
330
00:17:44,689 --> 00:17:45,769
If the baby is going to be.
331
00:17:45,801 --> 00:17:51,793
Moshe: Healthy, if you can, if you're
fortunate enough to be fertile, then you can
332
00:17:51,913 --> 00:17:57,298
essentially do the things that, you know, men
and women do to get pregnant.
333
00:17:57,466 --> 00:18:01,026
And then the baby comes out and it's there.
334
00:18:01,210 --> 00:18:02,978
There's not a whole lot you can do about it.
335
00:18:03,066 --> 00:18:09,490
But if you're going through more designer
methods like IVF or other things, then you're
336
00:18:09,522 --> 00:18:16,634
essentially taking a natural process and
making it into a moral debate.
337
00:18:16,754 --> 00:18:23,874
Because what they're really asking you is if
you're going through IVF and you are creating
338
00:18:25,294 --> 00:18:32,182
a certain number of viable embryos and they're
just sitting there, do you want us to have the
339
00:18:32,198 --> 00:18:37,230
ability to look at them and go, well, that one
doesn't have a genetic predisposition for
340
00:18:37,262 --> 00:18:37,678
autism.
341
00:18:37,766 --> 00:18:38,910
That one does.
342
00:18:39,062 --> 00:18:44,390
So we're going to take the one that doesn't
because you don't want to give that
343
00:18:44,542 --> 00:18:45,574
opportunity to your child.
344
00:18:45,614 --> 00:18:48,746
Leah: So essentially, what they're talking
about, and that's eugenics, ultimately, is
345
00:18:48,770 --> 00:18:49,218
eugenics.
346
00:18:49,266 --> 00:18:50,074
Moshe: That's all it is.
347
00:18:50,154 --> 00:18:54,938
Leah: And that's the only reason other than
the, you know, syndromatic with other health
348
00:18:54,986 --> 00:19:01,154
problems that we could see that people would
want to do genetic testing for ASD or ADHD or
349
00:19:01,194 --> 00:19:06,706
any non life threatening difference that they
would want to weed out of their family and
350
00:19:06,770 --> 00:19:09,554
there are people who absolutely would want to
do that.
351
00:19:09,714 --> 00:19:14,054
And I have opinions, but I'm not going to pass
moral judgment.
352
00:19:14,494 --> 00:19:17,374
Moshe: And I mean, I have opinions, too, and I
can speak from first hand.
353
00:19:17,414 --> 00:19:19,550
Leah: Experience, but I mean, we're jews.
354
00:19:19,582 --> 00:19:20,790
We know what eugenics is.
355
00:19:20,862 --> 00:19:26,614
Moshe: Yes, unfortunately, eugenics is
something that the jewish people throughout
356
00:19:26,654 --> 00:19:31,006
history have a very long and bad history with
because it's something that happened.
357
00:19:31,030 --> 00:19:35,790
And, you know, anyway, we're not going to get
into it because this is a podcast about
358
00:19:35,822 --> 00:19:42,672
neurodivergency, not, you know, genetics, but
essentially look up, you know, Doctor Mengele
359
00:19:42,848 --> 00:19:44,704
and the people who conducted.
360
00:19:44,784 --> 00:19:46,224
Leah: Doctor Asperger.
361
00:19:46,384 --> 00:19:48,424
Moshe: Yes, Doctor Asperger.
362
00:19:48,464 --> 00:19:52,720
People who essentially, their job was to
363
00:19:52,752 --> 00:20:00,608
either try to find what makes a person fit and
what makes a person unfit and then what to do
364
00:20:00,656 --> 00:20:02,400
with the ones who are unfit.
365
00:20:02,552 --> 00:20:05,472
And that is, unfortunately, something that's
366
00:20:05,488 --> 00:20:06,676
still happening today.
367
00:20:06,840 --> 00:20:09,184
Because if you.
368
00:20:09,684 --> 00:20:12,988
And again, this is a podcast about autism and
emergency.
369
00:20:13,036 --> 00:20:14,708
It's not a podcast about religion.
370
00:20:14,836 --> 00:20:18,604
But if you are the kind of person who
371
00:20:18,644 --> 00:20:19,504
believes.
372
00:20:20,364 --> 00:20:21,820
I don't want to get into pro choice or pro
373
00:20:21,852 --> 00:20:27,396
life, but if you're the kind of person that
believes that a child is a child is a child,
374
00:20:27,580 --> 00:20:37,022
then you have to decide if you're comfortable
with, you know, that kind of tinkering with
375
00:20:37,118 --> 00:20:39,030
essentially what amounts to God.
376
00:20:39,182 --> 00:20:41,886
And that is not something that everyone is
377
00:20:41,910 --> 00:20:46,430
going to want to do and not something that,
honestly, I feel should be available if
378
00:20:46,502 --> 00:20:47,078
there's a chance.
379
00:20:47,126 --> 00:20:50,174
Because, and again, this is a slippery slope,
380
00:20:50,254 --> 00:20:52,486
and I'm trying very hard not to get into it.
381
00:20:52,590 --> 00:20:57,110
But if you are looking for a predisposition
382
00:20:57,182 --> 00:21:01,858
genetically for something that will cause the
child immeasurable pain, reduces lifespan,
383
00:21:01,906 --> 00:21:03,834
cause them constant health issues like tay
Sachs.
384
00:21:03,874 --> 00:21:05,050
Leah: That's why we test for that, then.
385
00:21:05,082 --> 00:21:07,770
Moshe: You'Re going to go, you know what?
I get it.
386
00:21:07,802 --> 00:21:12,834
But also, I would rather have a child that I
can, you know, who's going to live a healthy,
387
00:21:12,874 --> 00:21:16,962
hopefully long life versus a child, you know,
that I'm going to take a chance that.
388
00:21:17,018 --> 00:21:21,066
That I'm going to have a child that may end up
having a life of pain and suffering and
389
00:21:21,090 --> 00:21:22,214
drastically reduced.
390
00:21:22,714 --> 00:21:24,434
But autism is not like that.
391
00:21:24,554 --> 00:21:25,734
I'm autistic.
392
00:21:26,424 --> 00:21:27,680
Avram is autistic.
393
00:21:27,752 --> 00:21:34,536
There are many autistics out there, except for
being somewhat, you know, I don't know, they
394
00:21:34,560 --> 00:21:34,888
have some.
395
00:21:34,936 --> 00:21:37,912
Some processing issues, but it's not fatal.
396
00:21:38,048 --> 00:21:39,520
It's not causing them pain.
397
00:21:39,592 --> 00:21:42,504
It's not causing them to be, you know,
398
00:21:42,624 --> 00:21:44,168
challenged in some way.
399
00:21:44,336 --> 00:21:50,084
And when you have a child, any child, you
400
00:21:50,664 --> 00:21:53,880
don't know, if that child's gonna sleep
through the night, it's gonna have digestive
401
00:21:53,912 --> 00:21:57,792
issues, it's gonna be lactose intolerant, it's
gonna have colic, is going to have frequent
402
00:21:57,808 --> 00:22:02,124
ear infections, it's going to have asthma, is
going to have any number of conditions.
403
00:22:02,504 --> 00:22:12,400
So you're just basically, if you want to go
along the idea of creating a superman or
404
00:22:12,432 --> 00:22:16,720
superwoman kind of child, then what's the
point anymore?
405
00:22:16,792 --> 00:22:20,088
Leah: I mean, I have a very strong genetic
predisposition to asthma.
406
00:22:20,136 --> 00:22:21,080
My mother's asthmatic.
407
00:22:21,112 --> 00:22:22,414
I'm asthmatic, right?
408
00:22:22,504 --> 00:22:23,818
Our daughter's asthmatic.
409
00:22:23,946 --> 00:22:25,762
Moshe could look at me and say, do I really
410
00:22:25,818 --> 00:22:32,634
want those asthma genes in my baby?
And that's kind of where we feel that we're at
411
00:22:32,714 --> 00:22:37,202
in terms of the autism genes?
Well, yes, it definitely causes people to have
412
00:22:37,218 --> 00:22:38,282
a harder life.
413
00:22:38,458 --> 00:22:40,354
Yes, it definitely causes.
414
00:22:40,434 --> 00:22:42,842
I'm not minimizing the struggles of people
with autism.
415
00:22:42,898 --> 00:22:44,354
Please don't take it that way.
416
00:22:44,514 --> 00:22:47,114
But is it worthy of saying this person doesn't
417
00:22:47,154 --> 00:22:51,060
deserve to exist?
I mean, I would ask an autistic, ask any
418
00:22:51,092 --> 00:22:54,156
autistic, do you like your life?
Are you happy that you're alive?
419
00:22:54,340 --> 00:22:57,340
And someone say no, but a lot would say yes.
420
00:22:57,452 --> 00:23:02,460
Moshe: Unfortunately, people with autism are
at a higher instance of mental illness and
421
00:23:02,492 --> 00:23:03,284
suicide.
422
00:23:03,444 --> 00:23:06,260
But I think that has far more to do with a
423
00:23:06,292 --> 00:23:10,020
lack of support versus a constant struggle.
424
00:23:10,052 --> 00:23:13,004
There was an article in the paper in Canada
425
00:23:13,164 --> 00:23:20,260
not too long ago about a woman who was trying
to do the medical assistance and dying program
426
00:23:20,332 --> 00:23:21,916
because she was autistic.
427
00:23:22,100 --> 00:23:25,980
And it really kind of horrified us because to
428
00:23:26,012 --> 00:23:30,484
my understanding, again, I'm autistic, my son
is autistic.
429
00:23:30,604 --> 00:23:32,116
And sometimes it's difficult.
430
00:23:32,220 --> 00:23:33,308
Sometimes it's hard.
431
00:23:33,436 --> 00:23:36,212
Sometimes, you know, it's challenging.
432
00:23:36,388 --> 00:23:40,332
But would you, is autism something that you
433
00:23:40,348 --> 00:23:44,900
would be willing to look at a child and go,
you don't deserve to live because you might be
434
00:23:44,932 --> 00:23:51,212
autistic?
I would argue no. And for me, I believe that I
435
00:23:51,228 --> 00:23:55,892
am in a position to make that call, because,
again, I am autistic.
436
00:23:56,028 --> 00:24:02,340
And I would very much like to have been
allowed to continue to live if my mother had
437
00:24:02,372 --> 00:24:03,544
been given the choice.
438
00:24:04,364 --> 00:24:06,148
So I am not a mistake.
439
00:24:06,276 --> 00:24:07,516
I am not an accident.
440
00:24:07,660 --> 00:24:09,076
I am not an error.
441
00:24:09,220 --> 00:24:10,564
I am a human being.
442
00:24:10,644 --> 00:24:13,116
And while I do have my own challenges and my
443
00:24:13,140 --> 00:24:20,720
own difficulties, I have a lot to contribute,
and I believe that my life is valuable.
444
00:24:20,872 --> 00:24:26,528
And the life of any child who has the chance
of developing autism is just as valuable.
445
00:24:26,696 --> 00:24:28,544
We are not trying to create a super race.
446
00:24:28,584 --> 00:24:31,128
We're just trying to have a family, right?
447
00:24:31,296 --> 00:24:33,408
And that's really what this is about.
448
00:24:33,456 --> 00:24:37,240
Leah: With all the diversity and challenges
that come with that, because every human being
449
00:24:37,312 --> 00:24:38,824
is born diverse.
450
00:24:38,864 --> 00:24:41,932
That's what sexual reproduction does, right,
451
00:24:42,068 --> 00:24:44,140
versus, you know, cloning or whatever.
452
00:24:44,332 --> 00:24:47,844
And everyone has their own challenges in life.
453
00:24:47,964 --> 00:24:49,064
Moshe: Everyone does.
454
00:24:49,364 --> 00:24:51,132
If your skin is a little bit lighter, you
455
00:24:51,148 --> 00:24:56,508
can't be in the sun as much if your eyes are
blue, if you have a predisposition for.
456
00:24:56,636 --> 00:25:00,948
Leah: I like Moshe's blue eyes, but I'm not
going to choose our child's eye color.
457
00:25:00,996 --> 00:25:04,748
Moshe: Diabetes, like, there's a lot of
variables that a child could develop and you
458
00:25:04,756 --> 00:25:09,036
could go through all the testing and try and
theoretically weed out every little thing that
459
00:25:09,060 --> 00:25:12,580
they have the ability to test, and then boom,
there's like something else that they didn't
460
00:25:12,612 --> 00:25:13,788
expect that comes up anyway.
461
00:25:13,836 --> 00:25:16,348
Leah: But how many things do they not have the
ability to test?
462
00:25:16,396 --> 00:25:20,844
If you talk to, again, an honest geneticist,
they will tell you there are so many things
463
00:25:20,884 --> 00:25:23,868
they don't have the ability to test because
they haven't studied it yet, because they
464
00:25:23,876 --> 00:25:26,100
haven't found it yet, because they don't know
exactly.
465
00:25:26,132 --> 00:25:27,828
The human genome is huge.
466
00:25:27,996 --> 00:25:29,104
Moshe: It really is.
467
00:25:29,564 --> 00:25:33,196
Leah: Speaking of which, speaking of mistakes
and spelling errors in the genome, let's get
468
00:25:33,220 --> 00:25:34,304
back to genetics.
469
00:25:35,244 --> 00:25:37,692
So there are two types of changes that you
470
00:25:37,708 --> 00:25:38,860
could see in some of these genes.
471
00:25:38,932 --> 00:25:42,326
So basically, against the expense, one is
472
00:25:42,350 --> 00:25:45,214
called monogenic and the other is called
polygenic.
473
00:25:45,254 --> 00:25:49,594
Now, mono means one, poly means money, just
for those of you who are out there.
474
00:25:50,014 --> 00:25:55,878
So monogenic changes means that there is one
change in the genes, right?
475
00:25:55,926 --> 00:26:00,566
So one gene is off, it's knocked over, it's
misspelled, it's the wrong letter, and then
476
00:26:00,590 --> 00:26:05,566
it'll maybe knock over another gene further
down the line and cause some sort of a
477
00:26:05,590 --> 00:26:06,326
diagnosis.
478
00:26:06,430 --> 00:26:09,430
So, you know, a syndrome or an issue like
479
00:26:09,462 --> 00:26:15,470
asthma, like I have, or an issue like cancer,
for example.
480
00:26:15,662 --> 00:26:22,022
And then there are polygenic changes, which
are multiple but subtle changes in many, many
481
00:26:22,078 --> 00:26:27,514
genes that will cause a very complex disorder
like autism.
482
00:26:27,814 --> 00:26:34,134
And they just don't really have the
technology, truthfully, to look in detail at
483
00:26:34,174 --> 00:26:35,788
all of those little changes.
484
00:26:35,926 --> 00:26:39,896
So it may be the way genes work right there.
485
00:26:39,960 --> 00:26:45,696
They're lettered and you expect, you know, an
a to be here, a g to be there, a t to be
486
00:26:45,720 --> 00:26:46,192
there.
487
00:26:46,328 --> 00:26:49,032
And it may look like you're agtagt, and then
488
00:26:49,048 --> 00:26:54,096
suddenly there's another t there somewhere,
and you have many of those in a line, and it
489
00:26:54,120 --> 00:26:57,896
could cause nothing or it could cause autism,
or it could cause.
490
00:26:58,080 --> 00:27:01,208
I don't know, skin rashes, I don't know.
491
00:27:01,216 --> 00:27:02,498
It could cause anything.
492
00:27:02,696 --> 00:27:03,198
Moshe: Right.
493
00:27:03,286 --> 00:27:05,834
There's certain genetics that are very clear.
494
00:27:06,774 --> 00:27:12,694
Leah: The ability to do that reliably, or they
do, but it costs a lot of money.
495
00:27:12,734 --> 00:27:14,678
And then you're looking at every single gene.
496
00:27:14,806 --> 00:27:16,646
And even then, if they don't know what that
497
00:27:16,670 --> 00:27:20,270
gene does, turned on or turned off, you're
going to have to go back in a few years
498
00:27:20,302 --> 00:27:21,854
anyway, once they've done more research.
499
00:27:21,974 --> 00:27:22,806
Moshe: Exactly.
500
00:27:22,950 --> 00:27:25,222
Certain things are very easy to detect.
501
00:27:25,318 --> 00:27:26,674
Certain things are not.
502
00:27:27,174 --> 00:27:30,084
Certain things are detected very simply
503
00:27:30,784 --> 00:27:32,256
through pure genetics.
504
00:27:32,360 --> 00:27:33,920
The reason that down syndrome.
505
00:27:33,952 --> 00:27:35,336
Down syndrome is a chromosome.
506
00:27:35,440 --> 00:27:35,800
It is.
507
00:27:35,832 --> 00:27:37,536
Leah: Chromosomes are the big parts, right?
508
00:27:37,600 --> 00:27:40,704
Moshe: So you get a certain number of
chromosomes from your mother and a certain
509
00:27:40,744 --> 00:27:41,696
number from your father.
510
00:27:41,800 --> 00:27:43,124
Leah: I think they have an extra.
511
00:27:43,504 --> 00:27:48,656
Moshe: Now, what down syndrome is, down
syndrome's actual scientific name is trisomy
512
00:27:48,680 --> 00:27:55,604
21, because on the 21st pair, there is three
genes instead of two.
513
00:27:55,704 --> 00:27:56,844
Leah: So they have 24.
514
00:27:56,924 --> 00:28:00,904
Moshe: They have 24 genes instead of 23.
515
00:28:01,404 --> 00:28:02,236
Again, 23.
516
00:28:02,260 --> 00:28:04,668
Andme is not called 23 me because it's a lucky
number.
517
00:28:04,756 --> 00:28:06,704
That's literally what you have.
518
00:28:07,244 --> 00:28:11,324
And on the 21st, whatever you want to call it,
519
00:28:11,364 --> 00:28:13,984
there's a third when there should only be two.
520
00:28:14,364 --> 00:28:15,548
And that is what causes.
521
00:28:15,596 --> 00:28:17,596
Leah: So one for mom, one from dad, and a
random.
522
00:28:17,700 --> 00:28:23,956
Moshe: And then just like a random anomaly,
they have an extra chromosome, and it is a
523
00:28:23,980 --> 00:28:26,604
very clear link.
524
00:28:26,644 --> 00:28:29,068
Like, you could do a panel and go, there it is
525
00:28:29,116 --> 00:28:29,668
right there.
526
00:28:29,756 --> 00:28:34,476
Leah: And it's very easy to see because it's
on the chromosomal level, which is not the
527
00:28:34,500 --> 00:28:35,948
individual genes, but it's sort.
528
00:28:35,956 --> 00:28:40,004
Moshe: Of the whole big picture and something
like fragile x, you could look at the X
529
00:28:40,044 --> 00:28:42,964
chromosome and see that little piece and go,
that's fragile x.
530
00:28:43,044 --> 00:28:44,260
Leah: We're going to talk about fragile x.
531
00:28:44,292 --> 00:28:46,028
Moshe: But autism, there's no.
532
00:28:46,196 --> 00:28:46,684
Leah: You can't.
533
00:28:46,724 --> 00:28:50,844
Moshe: You could look at all the genes and you
can't, like, look and go, oh, well, see there,
534
00:28:50,884 --> 00:28:53,264
right there is on that thing that means that
autism.
535
00:28:53,684 --> 00:28:57,780
Leah: Individual lettering within the
chromosomes, and it's very complex.
536
00:28:57,892 --> 00:28:59,788
Moshe: It's. They discussed it in the video.
537
00:28:59,876 --> 00:29:04,396
It's like looking at a book, and you have to
538
00:29:04,420 --> 00:29:10,884
basically open the book and go through every
recipe and find a spelling mistake in one
539
00:29:10,924 --> 00:29:15,956
recipe of one ingredient and go, see, that is
what's causing this.
540
00:29:16,020 --> 00:29:20,872
Leah: And in reality, our scientific ability
is more like looking at all the recipes and
541
00:29:20,888 --> 00:29:22,408
seeing whether or not they're cookies.
542
00:29:22,576 --> 00:29:23,024
Moshe: Right.
543
00:29:23,104 --> 00:29:26,768
Leah: But looking for spelling mistakes in the
individual ingredients is.
544
00:29:26,816 --> 00:29:28,320
It's very involved.
545
00:29:28,352 --> 00:29:29,976
It's possible, but it's very involved.
546
00:29:30,040 --> 00:29:32,696
Moshe: And if you're looking at the 21st
shelf, and you go, there's three books there,
547
00:29:32,720 --> 00:29:33,728
and there should be two.
548
00:29:33,856 --> 00:29:34,464
Leah: That's easy.
549
00:29:34,504 --> 00:29:35,680
Moshe: You can just look at it.
550
00:29:35,832 --> 00:29:37,440
You don't even have to do anything else.
551
00:29:37,552 --> 00:29:42,656
But with autism or with the potential for
autism as well as other syndromes or
552
00:29:42,680 --> 00:29:46,700
disorders, you really have to go down, down
deep to the.
553
00:29:46,732 --> 00:29:51,132
Like, the actual letters and go, there's an a
there, and it should be a g, or whatever it
554
00:29:51,148 --> 00:29:51,276
is.
555
00:29:51,300 --> 00:29:52,212
I'm not a geneticist.
556
00:29:52,268 --> 00:29:55,484
Leah: And even then, they don't know what that
means because they haven't studied it.
557
00:29:55,524 --> 00:29:56,188
Moshe: That could be a thing.
558
00:29:56,236 --> 00:29:57,356
Leah: You're like, there's a g there, but.
559
00:29:57,380 --> 00:30:02,276
Moshe: We don't know what that does because
the truth is, and again, not trying to get
560
00:30:02,300 --> 00:30:09,964
into religion here, but the fact that a human
being is created the way they are is super
561
00:30:10,044 --> 00:30:10,572
scientific.
562
00:30:10,628 --> 00:30:10,940
Leah: It is.
563
00:30:10,972 --> 00:30:11,704
Moshe: It is.
564
00:30:12,004 --> 00:30:13,780
It is, frankly, amazing.
565
00:30:13,932 --> 00:30:22,468
And the truth is that every single person on
earth has something a little bit off because
566
00:30:22,516 --> 00:30:27,580
you can't create that much complexity and not,
like, accidentally.
567
00:30:27,732 --> 00:30:30,764
Like, there's a thing there that should be
this nothing.
568
00:30:30,844 --> 00:30:31,788
It could be a nothing.
569
00:30:31,916 --> 00:30:34,412
It could be, you know, a little thing that
570
00:30:34,508 --> 00:30:39,356
adds an extra freckle to your skin or, like, a
streak of white in your hair that they don't
571
00:30:39,380 --> 00:30:40,356
know why it happened.
572
00:30:40,460 --> 00:30:43,124
Like, it could just be something so minute, so
573
00:30:43,204 --> 00:30:46,588
minor that, well, there's a genetic error.
574
00:30:46,716 --> 00:30:50,164
That genetic error makes, you know, my nails
575
00:30:50,244 --> 00:30:54,948
grow longer than normal, but that genetic
error makes my brain not work.
576
00:30:54,996 --> 00:30:57,724
Leah: Like you're getting into Darwinism and
the survival of the fittest.
577
00:30:57,764 --> 00:31:00,220
Right?
Genetic errors are what cause evolution.
578
00:31:00,332 --> 00:31:00,820
Moshe: Exactly.
579
00:31:00,852 --> 00:31:02,780
Leah: It's just that they're beneficial
genetic errors.
580
00:31:02,812 --> 00:31:04,264
Moshe: Some are, some aren't.
581
00:31:04,564 --> 00:31:06,052
And again, that's like, there's lots of
582
00:31:06,068 --> 00:31:08,344
podcasts about evolution and darwinism.
583
00:31:10,304 --> 00:31:16,192
Leah: But, yeah, so that is where we're going,
is really, again, science.
584
00:31:16,288 --> 00:31:19,776
When you see it on tv, when you see it in the
crime dramas, when you see it in the medical
585
00:31:19,840 --> 00:31:23,792
dramas, it makes it look like we really
understand more than we do.
586
00:31:23,848 --> 00:31:30,724
But our ability to really understand genetics
on that level is quite limited.
587
00:31:31,184 --> 00:31:32,284
Moshe: It really is.
588
00:31:33,264 --> 00:31:36,376
We are in 2024 at the time of this recording,
589
00:31:36,480 --> 00:31:38,678
5783, if you follow the.
590
00:31:38,856 --> 00:31:39,834
But we are still.
591
00:31:39,914 --> 00:31:42,754
So we are still, like.
592
00:31:42,834 --> 00:31:46,854
So we're in the dark in the beginning stages.
593
00:31:47,514 --> 00:31:53,106
There was a. There was an article that I read
in the science journal, actually, this morning
594
00:31:53,290 --> 00:32:01,074
while we were waiting for the bus, and it said
something to the effect that they took a
595
00:32:01,114 --> 00:32:09,758
square millimeter of the human brain and tried
to map it, and they discovered that the amount
596
00:32:09,846 --> 00:32:16,326
of data that fits in that square millimeter is
in the trillions upon trillions.
597
00:32:16,470 --> 00:32:26,742
And that if they actually converted the human
brain to an inorganic data like field, it
598
00:32:26,758 --> 00:32:32,026
would take, I think, something like 147 acres
worth of computers to fill that amount of
599
00:32:32,050 --> 00:32:32,614
data.
600
00:32:33,074 --> 00:32:37,250
Leah: And then people are complaining because
your processor is a little slow.
601
00:32:37,402 --> 00:32:37,874
Moshe: Exactly.
602
00:32:37,914 --> 00:32:38,690
Leah: It's crazy.
603
00:32:38,762 --> 00:32:40,834
Moshe: The human brain, the square millimeter.
604
00:32:40,994 --> 00:32:44,010
A square millimeter of the human brain holds
605
00:32:44,042 --> 00:32:47,466
more data than any computer that exists today.
606
00:32:47,530 --> 00:32:48,402
Leah: And it would have to.
607
00:32:48,498 --> 00:32:50,906
It would, because you live for 100 years,
608
00:32:51,010 --> 00:32:55,210
maybe, if you're lucky, and you have to
process all those memories, all that
609
00:32:55,242 --> 00:33:00,560
information, everything you've learned,
languages, you know, people, names, dates,
610
00:33:00,632 --> 00:33:01,032
anyway.
611
00:33:01,088 --> 00:33:01,568
You know.
612
00:33:01,656 --> 00:33:06,552
You know what I'm saying?
So one of the things that the geneticists in
613
00:33:06,568 --> 00:33:12,496
the video that we watched discussed was one
benefit of getting genetic testing, they say,
614
00:33:12,680 --> 00:33:18,072
is so that the parents of children with ASD
don't feel guilty about giving them ASD.
615
00:33:18,208 --> 00:33:21,960
So essentially, it says, it's not your fault
that your child has ASD.
616
00:33:21,992 --> 00:33:26,794
It's their genes, or so that they can pin it
on the dad instead of the mom, or the mom
617
00:33:26,834 --> 00:33:27,490
instead of the dad.
618
00:33:27,522 --> 00:33:29,282
Or it's nobody, or it's a grandma.
619
00:33:29,458 --> 00:33:32,214
So what were our thoughts on that, Moshe?
620
00:33:32,834 --> 00:33:40,626
Moshe: I feel like science is such an
important field, and specifically the field of
621
00:33:40,650 --> 00:33:46,506
genetic research, when it comes to discovering
cures for diseases and discovering causes for
622
00:33:46,570 --> 00:33:52,102
conditions, are so important to the future of
medicine and science and chemistry and all
623
00:33:52,118 --> 00:33:52,862
that stuff.
624
00:33:53,038 --> 00:33:56,310
I don't know that relieving guilt is a worthy
625
00:33:56,342 --> 00:33:56,790
endeavor.
626
00:33:56,862 --> 00:33:57,470
Leah: I don't.
627
00:33:57,582 --> 00:34:00,758
Okay, so I produced a child with significant
628
00:34:00,886 --> 00:34:05,102
challenges for autism, and I don't know that
I've ever, like, woken up in the morning and
629
00:34:05,118 --> 00:34:07,234
gone, I feel so guilty about that.
630
00:34:08,814 --> 00:34:10,574
I don't understand the concept.
631
00:34:10,734 --> 00:34:11,630
Moshe: Okay, so.
632
00:34:11,742 --> 00:34:14,198
And again, this is a bit of a strange tangent,
633
00:34:14,326 --> 00:34:19,592
but there was a really good video by Rabbi
Lord Jonathan Sacks, who I greatly admire,
634
00:34:19,648 --> 00:34:25,632
blessed memory, because he passed away a few
years ago, and it was to do with antisemitism.
635
00:34:25,808 --> 00:34:30,440
And as part of the video, anti semitism is
anti jewish racism.
636
00:34:30,512 --> 00:34:36,400
By the way, part of the video, they were
discussing why anti semitism exists.
637
00:34:36,552 --> 00:34:37,768
Again, a weird tangent that.
638
00:34:37,776 --> 00:34:38,564
I have a point.
639
00:34:39,024 --> 00:34:43,214
And they said that when it comes to.
640
00:34:44,714 --> 00:34:48,562
When it comes to a negative situation, when it
641
00:34:48,578 --> 00:34:52,714
comes to a negative event, because they're
talking about the origins of antisemitism,
642
00:34:52,874 --> 00:34:55,138
there's two ways you can approach it.
643
00:34:55,266 --> 00:34:57,906
You can say, what can we do about this?
644
00:34:58,010 --> 00:35:03,018
Or who can we blame for this?
And when you're looking at a thing like
645
00:35:03,066 --> 00:35:09,704
autism, or you're looking at a thing, like
anything genetic, really.
646
00:35:11,404 --> 00:35:18,364
If you have a parent that has a child who has
autism, there's a lot of resources out there,
647
00:35:18,404 --> 00:35:21,104
especially if it's detected when the child is
young.
648
00:35:22,164 --> 00:35:28,076
It's very difficult sometimes to detect in
babies until you start reaching milestones or
649
00:35:28,100 --> 00:35:30,340
not reaching them, but it's not true.
650
00:35:30,372 --> 00:35:31,396
Leah: They've actually done stuff.
651
00:35:31,460 --> 00:35:32,628
Moshe: They do fantastic.
652
00:35:32,756 --> 00:35:35,884
Leah: We can look them up and maybe post them
somewhere.
653
00:35:36,004 --> 00:35:40,052
But they've done studies where you can
actually diagnose autism in babies as young as
654
00:35:40,068 --> 00:35:44,420
a month because they track eye movements, you
know, the whole eye contact thing.
655
00:35:44,492 --> 00:35:45,464
Moshe: That's incredible.
656
00:35:45,844 --> 00:35:48,116
I'm really interested, like, advances in
657
00:35:48,180 --> 00:35:48,804
titans.
658
00:35:48,924 --> 00:35:50,588
Leah: But again, that's not genetic science.
659
00:35:50,636 --> 00:35:52,100
That's observational science.
660
00:35:52,212 --> 00:35:54,532
Right?
ASD is an observational diagnosis.
661
00:35:54,588 --> 00:35:55,796
Moshe: So if you have.
662
00:35:55,940 --> 00:35:57,020
Okay, so you have.
663
00:35:57,052 --> 00:36:03,610
You are a new mother or you're a new father,
your new parents, and you have a baby, and the
664
00:36:03,642 --> 00:36:09,970
testing like you described is done, and the
baby has now conclusively been, you know,
665
00:36:10,042 --> 00:36:10,522
designated.
666
00:36:10,578 --> 00:36:12,682
This child likely has autism.
667
00:36:12,858 --> 00:36:18,994
There's a number of different ways that you
would react to that news or what you would
668
00:36:19,114 --> 00:36:20,498
take away from that.
669
00:36:20,626 --> 00:36:22,234
And I don't know that it's.
670
00:36:22,314 --> 00:36:30,652
That it's healthy or even responsible to
pander to the argument that one of their main
671
00:36:30,708 --> 00:36:35,212
priorities is, whose fault is this?
Your child has autism.
672
00:36:35,348 --> 00:36:37,260
That's unfortunate.
673
00:36:37,372 --> 00:36:38,812
I mean, I'm sure there's a lot of things we
674
00:36:38,828 --> 00:36:39,076
can do.
675
00:36:39,100 --> 00:36:40,036
What can we do to help them?
676
00:36:40,060 --> 00:36:42,604
What can we do to help support them?
What can we do to guide them?
677
00:36:42,684 --> 00:36:46,460
What allowances can we make?
What can we do to make their life easier?
678
00:36:46,572 --> 00:36:48,100
Not, oh, they have autism.
679
00:36:48,252 --> 00:36:49,284
Well, is this my fault?
680
00:36:49,324 --> 00:36:50,756
Is this his fault?
Whose fault is this?
681
00:36:50,780 --> 00:36:51,708
Leah: And again, why.
682
00:36:51,796 --> 00:36:53,404
Why is autism one of those things?
683
00:36:53,444 --> 00:36:55,060
Because it's so not nice.
684
00:36:55,212 --> 00:36:57,676
Could you guys picture again, our baby has
685
00:36:57,700 --> 00:37:00,908
their first asthma attack, and moshe goes,
well, this is clearly your fault.
686
00:37:01,036 --> 00:37:03,020
Everybody would say, he's so mean.
687
00:37:03,212 --> 00:37:04,204
So why would.
688
00:37:04,284 --> 00:37:05,588
Why would autism be anything?
689
00:37:05,636 --> 00:37:09,504
Moshe: Asthma, typo and taequin, diabetes,
anything.
690
00:37:10,884 --> 00:37:17,940
When you're in a position, especially as a
parent, where you're essentially blaming your
691
00:37:17,972 --> 00:37:24,700
child's conditions for, you know, on certain
things because, well, okay, so did I do
692
00:37:24,732 --> 00:37:26,460
something wrong?
Because, I mean, if you're a new mother,
693
00:37:26,492 --> 00:37:27,348
you're gonna be worried.
694
00:37:27,436 --> 00:37:28,180
Should I drink this?
695
00:37:28,212 --> 00:37:29,540
Should I eat this?
Maybe I took a pill.
696
00:37:29,572 --> 00:37:31,988
Leah: I shouldn't have taken autism.
697
00:37:32,036 --> 00:37:34,236
Like, you know, the whole vaccine thing, which
698
00:37:34,260 --> 00:37:35,460
has been debunked, by the way.
699
00:37:35,492 --> 00:37:36,572
Please don't write me.
700
00:37:36,628 --> 00:37:37,404
Don't write me.
701
00:37:37,484 --> 00:37:38,944
I don't want to hear about it?
702
00:37:39,804 --> 00:37:44,020
The whole vaccine thing and the whole, oh,
well, nurture versus nature and did you expose
703
00:37:44,052 --> 00:37:46,698
your child to mercury?
And did you eat tuna while you were pregnant?
704
00:37:46,756 --> 00:37:51,254
Did you drink caffeine?
Like, there was a lot of those things around
705
00:37:51,294 --> 00:37:53,646
that tried to blame the mom in the pregnancy.
706
00:37:53,790 --> 00:37:55,710
And the reality is there's some environmental
707
00:37:55,742 --> 00:37:57,934
factors, but the vast majority of it is
genetic.
708
00:37:57,974 --> 00:37:59,674
We just don't understand why.
709
00:37:59,974 --> 00:38:04,838
Moshe: And, yeah, and again, as we said at the
beginning of the episode, there is a
710
00:38:04,886 --> 00:38:12,354
beneficial reason to do genetic testing,
either before the case of.
711
00:38:14,024 --> 00:38:24,776
Of autism being discovered or possibly after
and her daughter came home from school, or if
712
00:38:24,800 --> 00:38:30,600
you're in the case of you have a child and the
child is now out and about and you've
713
00:38:30,632 --> 00:38:34,324
diagnosed them as autistic, you're not.
714
00:38:35,184 --> 00:38:36,680
If you're still at the point where you're
715
00:38:36,712 --> 00:38:43,484
trying to decide whose fault it is, then
that's not helping you as parents, and it's
716
00:38:43,524 --> 00:38:44,948
certainly not helping the child.
717
00:38:45,076 --> 00:38:46,900
Do you think your child cares whose.
718
00:38:46,932 --> 00:38:48,420
Leah: Fault it is that they have autism?
719
00:38:48,532 --> 00:38:49,468
Moshe: They don't care.
720
00:38:49,636 --> 00:38:52,420
Leah: They just know that that's something I
kind of do.
721
00:38:52,452 --> 00:38:57,180
Look at your family members and go, oh, yeah,
oh, yeah, that's the autistic one.
722
00:38:57,212 --> 00:38:58,124
That's where you got it from.
723
00:38:58,164 --> 00:39:00,076
We kind of do, but it's more of a fun game we
724
00:39:00,100 --> 00:39:00,452
play.
725
00:39:00,548 --> 00:39:04,464
Moshe: Yes, because when you have autism, it's
very easy to.
726
00:39:04,844 --> 00:39:08,300
To get to that point where you can kind of
make light of it.
727
00:39:08,372 --> 00:39:12,844
And it's not to try and diminish or belittle
or undermine the fact that being autistic is
728
00:39:12,884 --> 00:39:15,304
oftentimes difficult, sometimes wonder why.
729
00:39:18,004 --> 00:39:19,384
And we're in a great position.
730
00:39:20,404 --> 00:39:30,796
But at the same time, if you are spending so
much time trying to decide whose fault it is
731
00:39:30,820 --> 00:39:33,080
and you're not providing support to your
child.
732
00:39:33,252 --> 00:39:33,784
Leah: Exactly.
733
00:39:33,824 --> 00:39:39,484
Moshe: You're not giving your child the needs
that it will have, given that it is autistic.
734
00:39:40,144 --> 00:39:44,512
You're just trying to relay your own guilt.
735
00:39:44,648 --> 00:39:45,604
And guilt.
736
00:39:45,984 --> 00:39:49,856
Guilt has no place in a diagnosis.
737
00:39:49,920 --> 00:39:50,924
Leah: It really doesn't.
738
00:39:51,704 --> 00:39:54,416
So a few things that actually are useful that
739
00:39:54,440 --> 00:40:01,946
geneticists have found just for people's
information is that they have now notice that
740
00:40:02,130 --> 00:40:03,482
autism runs in families.
741
00:40:03,538 --> 00:40:05,322
It's not because of the MMR vaccine.
742
00:40:05,378 --> 00:40:07,698
It's not because mom drank coffee while she
was pregnant.
743
00:40:07,786 --> 00:40:10,722
It's not because you went bungee jumping when
you were 25.
744
00:40:10,778 --> 00:40:11,494
Whatever.
745
00:40:12,434 --> 00:40:15,434
So they have noticed that full siblings, so
746
00:40:15,474 --> 00:40:22,898
two full siblings together will have a 9.3%
chance higher to have autism if their sibling
747
00:40:22,946 --> 00:40:23,814
has autism.
748
00:40:24,474 --> 00:40:26,010
So full siblings, mom and dad.
749
00:40:26,042 --> 00:40:33,184
Say mom and dad, if one has autism, then the
other one will have a 9.3 higher chance or ten
750
00:40:33,224 --> 00:40:34,344
times higher chance of autism.
751
00:40:34,384 --> 00:40:34,944
Moshe: Almost.
752
00:40:35,104 --> 00:40:37,000
Almost ten times higher chance.
753
00:40:37,072 --> 00:40:40,504
Versus, you know, and for whatever reason.
754
00:40:40,544 --> 00:40:41,784
Leah: A maternal half sibling.
755
00:40:41,824 --> 00:40:44,392
So you have the same mom, different dad, you
756
00:40:44,408 --> 00:40:47,144
will have a 5.8% higher chance.
757
00:40:47,264 --> 00:40:47,904
Moshe: Right.
758
00:40:48,064 --> 00:40:49,424
Leah: A paternal half sibling.
759
00:40:49,464 --> 00:40:52,056
So same dads, different mom, you'll have a
760
00:40:52,080 --> 00:40:54,056
3.9% higher chance.
761
00:40:54,200 --> 00:40:56,848
And even if your cousin is autistic, so first
762
00:40:56,896 --> 00:41:01,648
cousin, you could have a 1.9% higher chance of
having an autism diagnosis.
763
00:41:01,736 --> 00:41:06,776
Moshe: So that child and another child share
the same grandparents.
764
00:41:06,880 --> 00:41:08,204
Exactly, yes.
765
00:41:08,864 --> 00:41:10,184
So there's a link.
766
00:41:10,264 --> 00:41:11,776
So there's definitely a genetic link.
767
00:41:11,840 --> 00:41:15,904
Leah: They've also noticed that if you have an
older sibling with autism, you have a much
768
00:41:15,944 --> 00:41:18,404
higher risk of having autism yourself.
769
00:41:19,184 --> 00:41:21,952
If the older sibling is a girl, it is an
770
00:41:22,008 --> 00:41:26,604
extremely high chance that any boys following
will have autism.
771
00:41:26,684 --> 00:41:30,452
Again, they don't know why, but statistically,
it's a thing that they've noticed.
772
00:41:30,548 --> 00:41:32,212
Moshe: There's definitely something to
discuss.
773
00:41:32,308 --> 00:41:40,624
Leah: For example, Raya is the oldest child
that I've, you know, born, and she's
774
00:41:41,164 --> 00:41:41,692
different.
775
00:41:41,788 --> 00:41:42,196
I don't know.
776
00:41:42,220 --> 00:41:43,100
She's some sort of neuro.
777
00:41:43,132 --> 00:41:43,572
Spicy.
778
00:41:43,628 --> 00:41:44,796
I'm not exactly sure.
779
00:41:44,900 --> 00:41:47,948
And Avro came out like full autism and ADHD,
780
00:41:47,996 --> 00:41:50,500
which we haven't had diagnosed yet.
781
00:41:50,532 --> 00:41:52,700
But a neurologist looked at him and was like,
782
00:41:52,732 --> 00:41:59,348
yeah, so bring him back, because ADHD, and
that is apparently a huge thing.
783
00:41:59,396 --> 00:42:04,124
Whereas if the girl is older and they're
neurospicy or even not, if your older sibling
784
00:42:04,164 --> 00:42:09,596
is a girl, you have a much higher chance of
having genetic predisposition to ASD.
785
00:42:09,780 --> 00:42:10,504
Moshe: Right.
786
00:42:13,884 --> 00:42:17,984
Leah: So let's discuss the three types of
testing that they currently do right now.
787
00:42:18,694 --> 00:42:23,062
The first is they do a chromosomal array
testing.
788
00:42:23,118 --> 00:42:27,998
That means they're looking at the 23
chromosomes for mom and 23 from dad and seeing
789
00:42:28,046 --> 00:42:30,222
if there's anything amiss there.
790
00:42:30,278 --> 00:42:33,394
At this point, that's very easy for them to do
791
00:42:33,694 --> 00:42:36,238
because they're quite practiced at it, and
it's large chunks.
792
00:42:36,286 --> 00:42:36,446
Right.
793
00:42:36,470 --> 00:42:38,582
You're looking at the whole recipe books or
794
00:42:38,598 --> 00:42:40,142
the whole shelves at the same time.
795
00:42:40,238 --> 00:42:41,750
Moshe: That's sort of the array.
796
00:42:41,822 --> 00:42:43,854
The array test is typically how you would
797
00:42:43,894 --> 00:42:50,430
diagnose trisomy 21, because, like I said,
it's very easy to see that third set on the.
798
00:42:50,462 --> 00:42:52,794
On the 21st tier.
799
00:42:53,854 --> 00:42:58,794
Leah: Then they talk about fragile x. So they
check for fragile x chromosome.
800
00:42:59,534 --> 00:43:03,654
Boys are more severely affected by that
because they only have one x chromosome.
801
00:43:03,694 --> 00:43:09,646
And if it has it, then they're affected by a
lot of times a much higher risk of ASD.
802
00:43:09,790 --> 00:43:12,674
And they have learning disabilities and
intellectual disabilities.
803
00:43:13,364 --> 00:43:17,284
Other things, the shyness, sometimes some
unique.
804
00:43:17,324 --> 00:43:22,444
Moshe: Facial features, and girls, because
they have the two x chromosomes, it's less
805
00:43:22,484 --> 00:43:22,820
obvious.
806
00:43:22,892 --> 00:43:23,564
It's off.
807
00:43:23,644 --> 00:43:29,308
Like the unhealthy one is offsetting or is
offset by the healthy one, which causes
808
00:43:29,396 --> 00:43:36,012
symptoms, but less severe generally than boys.
809
00:43:36,148 --> 00:43:39,708
Leah: And the third one is whole exome
sequencing.
810
00:43:39,756 --> 00:43:44,260
So that means they literally go through every
gene and they check the spelling of all the
811
00:43:44,292 --> 00:43:45,396
genetic code.
812
00:43:45,580 --> 00:43:47,508
That is the most expensive, the most
813
00:43:47,556 --> 00:43:53,532
extensive, the hardest to get, and it takes
the longest, probably the least useful because
814
00:43:53,588 --> 00:43:56,932
we only know what some of the genes do, right?
815
00:43:56,988 --> 00:44:02,500
Moshe: Because you could get a bunch of
different hits about certain spelling errors.
816
00:44:02,532 --> 00:44:07,324
We'll call them and, you know, you'll look at
them and go, what does that mean?
817
00:44:07,444 --> 00:44:08,344
I don't know.
818
00:44:08,894 --> 00:44:13,718
Leah: So syndromes that can arise from these
genetic differences, I don't think we're going
819
00:44:13,726 --> 00:44:15,274
to spend a lot of time on that.
820
00:44:16,694 --> 00:44:20,134
I think we can do maybe a separate video or
821
00:44:20,214 --> 00:44:24,254
write a little article about it or something
if that interests people, let us know.
822
00:44:24,374 --> 00:44:29,638
The last thing I wanted to talk about is,
again, this is one of those why questions.
823
00:44:29,686 --> 00:44:34,630
Why would you bother if you find a gene that
is associated with ASD?
824
00:44:34,782 --> 00:44:39,942
The person actually may not even have ASD, so
they have the gene there and they don't have
825
00:44:39,958 --> 00:44:40,182
it.
826
00:44:40,238 --> 00:44:43,470
I have that, actually, I was contacted after
827
00:44:43,502 --> 00:44:48,790
my genetic testing and asked if I wanted to
participate in a study because I have a gene
828
00:44:48,822 --> 00:44:54,862
that should theoretically give me 70% chance
of having autism, which clearly I must have
829
00:44:54,878 --> 00:44:55,670
passed on.
830
00:44:55,822 --> 00:44:56,254
Right?
831
00:44:56,334 --> 00:44:58,110
But we don't know.
832
00:44:58,262 --> 00:45:01,198
And if you have no genetic cause, you can
833
00:45:01,246 --> 00:45:02,670
totally have ASD.
834
00:45:02,862 --> 00:45:03,286
Moshe: Right?
835
00:45:03,350 --> 00:45:07,034
Leah: So we don't even see what the point of
looking for it is.
836
00:45:07,334 --> 00:45:07,790
Moshe: Right.
837
00:45:07,862 --> 00:45:12,954
Ultimately, some things are worth testing,
838
00:45:13,614 --> 00:45:21,326
again, either because they come with, you
know, significant health issues or drastically
839
00:45:21,390 --> 00:45:22,434
reduced life.
840
00:45:22,854 --> 00:45:25,674
Some things are more.
841
00:45:26,094 --> 00:45:26,870
I don't know.
842
00:45:26,982 --> 00:45:27,630
I think I would.
843
00:45:27,662 --> 00:45:31,022
I would characterize them in the category of
designer genes.
844
00:45:31,198 --> 00:45:36,594
Like if you kind of prefer that your child be
not autistic or maybe you.
845
00:45:37,134 --> 00:45:41,374
Or if you want your child to have blue eyes or
long eyelashes, you know, you want to.
846
00:45:41,414 --> 00:45:44,750
You want to basically pick and choose what you
want your child to look.
847
00:45:44,782 --> 00:45:46,350
Leah: Like, which is illegal, by the way.
848
00:45:46,382 --> 00:45:48,274
I think in most countries maybe all.
849
00:45:48,654 --> 00:45:49,670
Moshe: It definitely is.
850
00:45:49,702 --> 00:45:54,254
And if it's not, it should be because there's
851
00:45:54,294 --> 00:46:07,556
no instance whatsoever of the color of your
child's eyes being a factor in whether or not
852
00:46:07,620 --> 00:46:12,076
you either carry the child to term or you love
them.
853
00:46:12,220 --> 00:46:23,884
And unfortunately, I do have to bring up the
case of gender selection because it's a big
854
00:46:23,924 --> 00:46:30,190
deal because I come from Canada and most
recently in British Columbia on the west
855
00:46:30,222 --> 00:46:41,518
coast, and there is a huge instance in the
west coast of not doing certain testing unless
856
00:46:41,566 --> 00:46:44,094
it's absolutely unnecessary.
857
00:46:44,174 --> 00:46:45,714
Absolutely necessary.
858
00:46:46,334 --> 00:46:50,926
Because in certain cultures, and I won't name
them for the sake of not being accused of
859
00:46:50,950 --> 00:46:56,394
being racist or whatever, but there are
certain cultures that definitely favor males
860
00:46:56,734 --> 00:46:57,166
over.
861
00:46:57,230 --> 00:46:58,614
Over girls.
862
00:46:58,734 --> 00:47:06,270
And they went so far as to actually make it
against the law to tell the parents the gender
863
00:47:06,302 --> 00:47:11,310
of the child because it would increase the
risk that they would abort a child if they
864
00:47:11,342 --> 00:47:13,046
were a girl.
865
00:47:13,230 --> 00:47:17,030
Leah: Yeah, I don't want to go there, but it's
absolutely a thing.
866
00:47:17,222 --> 00:47:18,452
I don't even believe in it.
867
00:47:18,478 --> 00:47:20,440
And gender selection, and again, it's illegal.
868
00:47:20,512 --> 00:47:21,664
I believe in most places.
869
00:47:21,704 --> 00:47:23,664
I think some places you can do it, but I would
870
00:47:23,704 --> 00:47:25,464
have to do research on that.
871
00:47:25,624 --> 00:47:27,592
And then I don't know that I want anybody to
872
00:47:27,608 --> 00:47:30,564
look at my Google history if I did research on
it.
873
00:47:31,184 --> 00:47:32,376
Moshe: It's definitely a big thing.
874
00:47:32,400 --> 00:47:34,336
And I know that in Canada they're really
875
00:47:34,400 --> 00:47:40,920
trying to restrict it and it already is quite
restricted because needless to say, if you do
876
00:47:40,952 --> 00:47:46,444
genetic testing on a baby, you can easily
determine what sex it is, obviously.
877
00:47:46,794 --> 00:47:50,466
And they definitely don't want to get into it.
878
00:47:50,490 --> 00:47:51,218
Leah: They do have a test.
879
00:47:51,266 --> 00:47:53,642
Now, did you know that when mom is pregnant
880
00:47:53,698 --> 00:47:58,186
and baby is far enough along, they can take
mom's blood and sequence the entire baby's
881
00:47:58,210 --> 00:47:58,706
genome?
882
00:47:58,810 --> 00:47:59,506
Moshe: Interesting.
883
00:47:59,610 --> 00:48:01,290
Leah: Yeah. So you can see everything.
884
00:48:01,362 --> 00:48:03,818
And it puts a lot of people at ease because
885
00:48:03,906 --> 00:48:07,882
they do test for a lot of the bad stuff before
baby's even big enough to see on the
886
00:48:07,898 --> 00:48:08,734
ultrasound.
887
00:48:09,154 --> 00:48:10,134
But also.
888
00:48:11,394 --> 00:48:14,814
Moshe: Right, because it's not.
889
00:48:15,434 --> 00:48:17,082
It's, again, one of those things where you're
890
00:48:17,098 --> 00:48:18,614
like, okay, the baby's there.
891
00:48:18,954 --> 00:48:20,074
Does it really matter?
892
00:48:20,154 --> 00:48:23,538
Unless it's something that could significantly
impact their life.
893
00:48:23,586 --> 00:48:26,850
Leah: Now we're getting into a pro choice
talk, which I'm happy to talk about again,
894
00:48:26,922 --> 00:48:27,654
separately.
895
00:48:28,554 --> 00:48:30,442
Enough interest would have to be shown in
896
00:48:30,458 --> 00:48:31,734
order for me to do that.
897
00:48:32,554 --> 00:48:34,346
I'm going to go out on record here and say
898
00:48:34,370 --> 00:48:35,694
that I am pro choice.
899
00:48:36,394 --> 00:48:39,050
I have interesting theories about what choices
900
00:48:39,082 --> 00:48:42,978
I would make and willing to talk about them
religiously.
901
00:48:43,146 --> 00:48:48,250
Moshe: You really can't help but be pro choice
because if you are of the mind that every life
902
00:48:48,282 --> 00:49:02,234
is sacred and every child is important, then
they have to be allowed to thrive in whatever
903
00:49:02,274 --> 00:49:03,534
capacity they can.
904
00:49:03,834 --> 00:49:07,108
But ultimately the child is.
905
00:49:07,276 --> 00:49:10,836
We don't believe in suffering, part of our,
part of the mother.
906
00:49:11,020 --> 00:49:17,316
And I mean, again, I'm not going to get into
it, but if the mother determines that the
907
00:49:17,340 --> 00:49:21,932
baby's at risk of suffering, then obviously we
have to consider those sorts of things.
908
00:49:22,068 --> 00:49:26,740
But again, that's a great conversation that we
can certainly get into if enough interested
909
00:49:26,772 --> 00:49:26,940
is.
910
00:49:26,972 --> 00:49:31,196
But otherwise, we'll try to stay away from the
911
00:49:31,220 --> 00:49:33,504
abortion debate as much as possible.
912
00:49:33,874 --> 00:49:36,970
Leah: Okay, so with our last ten minutes,
let's talk about our actual experience.
913
00:49:37,082 --> 00:49:37,866
So they already know.
914
00:49:37,890 --> 00:49:39,514
I said twice that I had a bunch of blood
915
00:49:39,554 --> 00:49:41,394
drawn, and they did genetic testing.
916
00:49:41,554 --> 00:49:44,586
And then because we said the words autism, we
917
00:49:44,610 --> 00:49:46,586
just said them in the office.
918
00:49:46,770 --> 00:49:48,642
While they were deciding which blood test to
919
00:49:48,658 --> 00:49:52,454
run on me, we were summoned to a genetic
counselor.
920
00:49:53,274 --> 00:49:59,842
We walked into the room, and you actually had
a very interesting thought process about it
921
00:49:59,858 --> 00:50:03,602
before we went, because he said, well, having
ASD is really hard for me, honey.
922
00:50:03,658 --> 00:50:07,098
If we can not have a kid with ASD, that would
be a good thing.
923
00:50:07,226 --> 00:50:09,786
That was actually what you said to me before
we went.
924
00:50:09,970 --> 00:50:16,294
After we went in there, after hearing what the
geneticist had to say, moshe changed his mind
925
00:50:16,834 --> 00:50:18,906
drastically and quickly.
926
00:50:19,090 --> 00:50:21,866
I was always of the mind that it's not the
927
00:50:21,890 --> 00:50:25,202
type of thing that I want to test for, because
it's not the type of thing I'd want to exclude
928
00:50:25,258 --> 00:50:26,414
or get rid of.
929
00:50:27,814 --> 00:50:29,374
But he had a different opinion.
930
00:50:29,414 --> 00:50:35,230
So we sat down, right?
And the genetic counselor looked directly at
931
00:50:35,262 --> 00:50:41,834
you and then asked a whole bunch of, like,
really invasive and inappropriate questions.
932
00:50:42,494 --> 00:50:45,206
Right?
Are you healthy?
933
00:50:45,270 --> 00:50:49,102
What do they define as healthy?
Somebody with no genetic predisposition to it?
934
00:50:49,158 --> 00:50:55,134
And of course, you have to answer no. And once
the autism thing came up, that was all she
935
00:50:55,174 --> 00:50:55,638
thought about.
936
00:50:55,686 --> 00:50:57,590
I was the mom literally sitting there going,
937
00:50:57,622 --> 00:50:59,308
I'm the one who's going to be pregnant.
938
00:50:59,476 --> 00:51:01,348
I was trying to interject.
939
00:51:01,516 --> 00:51:02,892
I have these genetic issues.
940
00:51:02,948 --> 00:51:04,172
Would you like to look at them?
941
00:51:04,308 --> 00:51:07,264
And she was like, no, let's talk about autism
for 4 hours.
942
00:51:08,324 --> 00:51:14,220
And then she definitely said, you know, well,
based on what I'm seeing, he has a very strong
943
00:51:14,292 --> 00:51:17,564
history of passing on autism, and are you sure
that you want to do this?
944
00:51:17,604 --> 00:51:23,640
And, you know, we do have a possibility of
looking at any zygotes that you produce in.
945
00:51:23,772 --> 00:51:30,072
You know, she didn't say the words, but it
came through as deleting any mistakes that
946
00:51:30,088 --> 00:51:31,004
might be there.
947
00:51:31,304 --> 00:51:32,928
And that's when you sort of looked at me and
948
00:51:32,936 --> 00:51:34,216
said, honey, I'm not a mistake.
949
00:51:34,280 --> 00:51:36,564
And I said, I know I told you.
950
00:51:37,224 --> 00:51:42,264
And I think we kindly on my part, kindly on
his part not so kindly told the geneticists
951
00:51:42,304 --> 00:51:43,432
that we're done now.
952
00:51:43,568 --> 00:51:45,752
And if this isn't a necessary thing to do in
953
00:51:45,768 --> 00:51:49,564
order for us to have a baby, we would like to
basically, yes.
954
00:51:51,044 --> 00:51:59,036
Moshe: The idea of creating a child, if you
have the option that is not autistic, you
955
00:51:59,060 --> 00:52:00,212
know, it was tempting to.
956
00:52:00,228 --> 00:52:02,396
Leah: You for, like, 3.5 seconds.
957
00:52:02,580 --> 00:52:10,084
Moshe: It may be preferable on the surface,
but deep down, you really do have to consider
958
00:52:10,164 --> 00:52:18,614
the fact that we're talking about an actual,
you know, life potential.
959
00:52:19,034 --> 00:52:27,802
And it's the difference between being able to
go in and, like, switch off the autism in a
960
00:52:27,818 --> 00:52:32,274
particular zygote and just being like, well,
no, because that's what we're talking about.
961
00:52:32,314 --> 00:52:35,570
We're not talking about just, like, doing
something.
962
00:52:35,642 --> 00:52:37,586
And then, oh, they're not autistic anymore.
963
00:52:37,690 --> 00:52:39,026
Leah: I'm more the sciency one.
964
00:52:39,050 --> 00:52:42,330
So Moshe didn't understand, and when she.
965
00:52:42,482 --> 00:52:47,234
He didn't understand what they meant by it,
and when she explained that they would be
966
00:52:47,394 --> 00:52:48,386
creating zygotes.
967
00:52:48,410 --> 00:52:48,522
Right.
968
00:52:48,538 --> 00:52:52,490
So creating life basically, essentially
babies, not to full term or anything, and
969
00:52:52,562 --> 00:52:54,934
throwing them away, he was horrified.
970
00:52:55,394 --> 00:52:56,154
Moshe: Yeah.
971
00:52:56,314 --> 00:52:58,994
Leah: It's because we don't have the ability
to turn on and off jeans.
972
00:52:59,034 --> 00:52:59,210
Right.
973
00:52:59,242 --> 00:53:00,442
But you didn't know that.
974
00:53:00,618 --> 00:53:06,210
Moshe: I'm not as familiar with science, so I
wasn't clear on what we were talking about.
975
00:53:06,362 --> 00:53:11,614
And when I was clear on it, I'm definitely of
the mind that every life is important,
976
00:53:11,954 --> 00:53:14,038
especially if it's, like, from me.
977
00:53:14,126 --> 00:53:16,486
Like, I don't think that any part of me should
978
00:53:16,510 --> 00:53:20,534
be thrown away because it's a little bit off.
979
00:53:20,614 --> 00:53:21,134
Yeah.
980
00:53:21,254 --> 00:53:23,230
Leah: So, yeah, he looked at me and said,
honey, I'm not a mistake.
981
00:53:23,262 --> 00:53:25,990
And I said, honey, I agreed before we even
came in here.
982
00:53:26,142 --> 00:53:29,910
And then we said to her, can we still proceed
if we don't do all here?
983
00:53:29,942 --> 00:53:34,286
Because she wanted to do all kinds of testing
on you to see if they could find a gene that
984
00:53:34,310 --> 00:53:40,018
they could, you know, use to select for the
best embryos, et cetera, et cetera.
985
00:53:40,186 --> 00:53:43,402
And we said, is it necessary?
She said, no, you'll just have to sign a
986
00:53:43,418 --> 00:53:43,634
waiver.
987
00:53:43,674 --> 00:53:45,134
And we said, okay, bye.
988
00:53:45,474 --> 00:53:50,746
Moshe: Yes, I would gladly sign a waiver that
said that I'm aware that my child has a good
989
00:53:50,770 --> 00:53:52,210
chance of being autistic.
990
00:53:52,362 --> 00:53:55,562
Like, oh, well, you know, whatever.
991
00:53:55,658 --> 00:53:58,746
Leah: Them just living in my uterus, they have
a good chance of being autistic because
992
00:53:58,770 --> 00:54:05,212
there's an oldest female sibling and their
older brother is profoundly autistic, you.
993
00:54:05,228 --> 00:54:12,100
Moshe: Know, oh, well, you know, we're in for
the ride, and it's it's going to be a really
994
00:54:12,252 --> 00:54:19,104
awesome journey and we definitely look forward
to involving all of you on it with us,
995
00:54:19,884 --> 00:54:23,276
depending on how things go and what happened.
996
00:54:23,420 --> 00:54:26,420
But yeah, so this is another episode.
997
00:54:26,452 --> 00:54:32,518
We're really, really going to try to stick to
a Sunday recording schedule and little
998
00:54:32,566 --> 00:54:32,870
content.
999
00:54:32,942 --> 00:54:34,622
So if you haven't had a chance to check out
1000
00:54:34,638 --> 00:54:41,686
our TikTok or our Instagram or Facebook, then
I would advise you to go do that.
1001
00:54:41,870 --> 00:54:46,870
There's a lot of really funny stuff that Leah
and I put up, a lot of stuff involving the
1002
00:54:46,902 --> 00:54:47,514
kids.
1003
00:54:48,374 --> 00:54:50,302
We're still going to try and figure out a way
1004
00:54:50,318 --> 00:54:53,034
to involve the kids in some way in the
podcast.
1005
00:54:53,414 --> 00:54:55,582
Leah: And I mean, they heard Ryan come home
today.
1006
00:54:55,678 --> 00:54:56,118
Moshe: They did.
1007
00:54:56,166 --> 00:54:58,834
She was already, it was her debut on.
1008
00:55:00,354 --> 00:55:04,014
You can email us at contact us at 99
autistic.com.
1009
00:55:04,354 --> 00:55:11,858
You can search for 99 autistic on YouTube, on
Apple Music, on Spotify, on pot chaser, on
1010
00:55:11,986 --> 00:55:13,050
iHeartRadio.
1011
00:55:13,162 --> 00:55:17,602
Leah: And it really helps us a lot, actually,
when you just listen, download, share rate,
1012
00:55:17,698 --> 00:55:19,226
interact with the podcast in any.
1013
00:55:19,250 --> 00:55:21,346
Moshe: Way on our podbean homepage, of course.
1014
00:55:21,410 --> 00:55:22,818
Leah: And also check out our Patreon.
1015
00:55:22,866 --> 00:55:25,182
I mean, it does allow us to do more of this
1016
00:55:25,298 --> 00:55:25,954
content.
1017
00:55:26,294 --> 00:55:32,478
Moshe: We do have the ability to have you, you
know, tip us or donate to us if you want.
1018
00:55:32,526 --> 00:55:33,514
It's on the website.
1019
00:55:34,454 --> 00:55:36,374
It can be a little, or it can be a lot.
1020
00:55:36,414 --> 00:55:37,262
It doesn't really matter.
1021
00:55:37,318 --> 00:55:40,030
There's some little gifts and stuff that I put
1022
00:55:40,062 --> 00:55:42,534
up for people that give a certain amount.
1023
00:55:42,574 --> 00:55:44,902
But honestly, if you like what we're saying
1024
00:55:44,958 --> 00:55:48,670
and you want us to keep saying it, it
definitely helps.
1025
00:55:48,862 --> 00:55:55,014
But, but we're going to try and keep it as, as
simplified as possible.
1026
00:55:58,594 --> 00:56:06,454
So thank you very much for listening today and
enjoy the pleasant sounds of our outro.
1027
00:56:08,034 --> 00:56:09,810
Well, that's our show for today.
1028
00:56:09,962 --> 00:56:12,290
Now, you know, one autistic just a little bit
1029
00:56:12,322 --> 00:56:12,894
better.
1030
00:56:13,354 --> 00:56:16,794
So something you may not know about some
1031
00:56:16,834 --> 00:56:21,294
autistics is that we often struggle with
ending social interactions.
1032
00:56:21,674 --> 00:56:23,374
So Leah.
1033
00:56:24,114 --> 00:56:26,514
Leah: All right, Moshe, I'll take care of it.
1034
00:56:26,674 --> 00:56:28,970
Thank you for listening to now, you know, one
1035
00:56:29,002 --> 00:56:29,562
autistic.
1036
00:56:29,618 --> 00:56:30,394
See you next week.