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Autism Subtypes · Why We Do What We Do

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  Speaker 1: You're listening to Why We Do what we Do. Welcome
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  Speaker 1: in the middle of more episodes that are about disability
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  Speaker 2: Second, second, we'll do the third, one third exactly.
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  Speaker 1: But it is November twelfth, and so I'm going to
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  Speaker 1: wish you all a chicken soup for the Soul Day,
• 2:40
  Speaker 1: and that can be plant based chicken if that's the
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  Speaker 1: way you swing.
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  Speaker 2: I was just gonna ask if a vegans could have
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  Speaker 2: this day. It is a GIS day, which it means geography.
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  Speaker 2: It's like Geography Information Systems Day.
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  Speaker 1: Okay, I thought that was GPS day. Just kidding.
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  Speaker 2: That's uh, who knows anymore, there's too many days.
• 3:00
  Speaker 1: Next day. It is is a confusing set of words
• 3:02
  Speaker 1: in the order that they go. It's Happy hour day,
• 3:05
  Speaker 1: so a whole day that's an hour long, or a
• 3:08
  Speaker 1: whole hour that's a day long, and either way it's
• 3:10
  Speaker 1: happy and it probably has something to do with imbibing substances.
• 3:13
  Speaker 1: But that's the day.
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  Speaker 2: That's the day. It is International Pathology day. It's a
• 3:18
  Speaker 2: weird day.
• 3:19
  Speaker 1: It is National French dip Day, although in France they
• 3:23
  Speaker 1: just call it National dip Day.
• 3:26
  Speaker 2: That's true. I don't know what the azu was called
• 3:28
  Speaker 2: there is it? What does aju mean? Does it just
• 3:31
  Speaker 2: mean sauce? Anyway, I don't know. I don't know elles
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  Speaker 2: speak French. It's a National Pizza with Everything day except anchovies.
• 3:40
  Speaker 1: Both lots of mushrooms. Yes, it is World Pneumonia Day.
• 3:44
  Speaker 1: Don't get the pneumonia the world. That's bad.
• 3:46
  Speaker 2: This is a really wild day. Is It's Dear Santa
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  Speaker 2: Letter Read Week, which is lovely.
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  Speaker 1: Yeah, I gotta get him in and it's got millions
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  Speaker 1: to read. It is Geography Awareness Week. Geography exists, y'all.
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  Speaker 1: That's an important dude.
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  Speaker 2: Apparently people do not know that, so we got to
• 4:03
  Speaker 2: do some more time on that kind of It's a
• 4:05
  Speaker 2: Home Care Aid Week.
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  Speaker 1: Good one, man. I think we've talked about doing an
• 4:09
  Speaker 1: episode about some version of that. We did, yeah somewhere,
• 4:12
  Speaker 1: but anyway, National Book Awards Week.
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  Speaker 2: Love that ideal of that. And it's International Week of
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  Speaker 2: Science and Peace, which the United States is best. It's
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  Speaker 2: the best, it's the best. But the United States is
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  Speaker 2: not participating this year.
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  Speaker 1: No, yeah, we don't participate this year. Maybe probably not
• 4:29
  Speaker 1: for the next few years. Hopefully one day again that
• 4:32
  Speaker 1: will be a thing. Hopefully, So if we want to yeah,
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  Speaker 1: if we want to survive as a species at least. Anyway,
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  Speaker 1: let's get to our topic at hand. We don't just
• 4:40
  Speaker 1: talk about holidays. We do talk about holidays, but we
• 4:43
  Speaker 1: don't only talk about holidays. As I said, we're sort
• 4:45
  Speaker 1: of in the middle of this kick of episodes that
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  Speaker 1: are about disability and accessibility, and important to point out
• 4:51
  Speaker 1: that this episode is not going to unpack the very
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  Speaker 1: complicated history of autism and diagnostic changes that have occurred
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  Speaker 1: over time. We've talked about that in other episodes. We
• 5:02
  Speaker 1: recommend checking those out. We actually released an episode called
• 5:06
  Speaker 1: what Happened to Asperger Syndrome and then we re release
• 5:10
  Speaker 1: that as a nostalgia So you can listen to the
• 5:12
  Speaker 1: nostalgia one because it'll have the entire original, full length
• 5:15
  Speaker 1: and updated information. But yeah, you can check that one out.
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  Speaker 1: And we've talked about autism in a number of places
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  Speaker 1: in a number of ways, so feel free to go
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  Speaker 1: back to check out those episodes. But we're adding to
• 5:27
  Speaker 1: our number of the discussions that we have about this topic.
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  Speaker 2: Yes, so we are going to talk about a major
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  Speaker 2: development in the autism studies that have occurred more recently
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  Speaker 2: and specifically how it intersects with genetics, because this is
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  Speaker 2: a there was a really interesting study that came out
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  Speaker 2: that was kind of an interesting advancement. I would say
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  Speaker 2: maybe as we unpack kind of the science and the
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  Speaker 2: structure and the new information that we have with autism
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  Speaker 2: studies and genetics.
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  Speaker 1: Very good. We always begin with the necessary information that
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  Speaker 1: you need to sort of proceed with the discussion that
• 6:00
  Speaker 1: we're going to have here, and the argument about causes
• 6:04
  Speaker 1: of autism have been complex, to say the least. However,
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  Speaker 1: the most currently accepted viewpoint outside of the ultra maga
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  Speaker 1: anti vax conspiracy theorists people who cannot tell their ass
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  Speaker 1: from a hole in the ground, is that autism is
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  Speaker 1: genetic and the causal factors of it are not understood. Really,
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  Speaker 1: we don't know what's going on here, but the research
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  Speaker 1: is ongoing. We're trying to learn more about what's going
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  Speaker 1: on with this diagnosis, how it comes about, what does
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  Speaker 1: it mean, et cetera.
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  Speaker 2: Right, So, in pursuit of understanding autism and autism spectrum
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  Speaker 2: disorder researchers continue to explore various aspects of autistic people
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  Speaker 2: and their related biology.
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  Speaker 1: So we're gonna this gets to be a fairly research
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  Speaker 1: heavy discussion and today because this is really based on
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  Speaker 1: like the sort of latest stuff that's coming out, So
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  Speaker 1: jump right into that. Actually, yeah, Littman and colleagues in
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  Speaker 1: an article published this year, this year being twenty twenty five.
• 7:00
  Speaker 1: You might be listening to this years down the road. So,
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  Speaker 1: published in twenty twenty five is an article called Decomposition
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  Speaker 1: of Phenotypic Heterogeneity and Autism reveals underlying genetic programs.
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  Speaker 2: That's the title of the article. Just it's like it's
• 7:15
  Speaker 2: like a spicy read. It's like how people like to read,
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  Speaker 2: like sexy romantic novels. That's what we're That's what we're
• 7:20
  Speaker 2: talking about here. Like it's like, oh, just rolls off
• 7:23
  Speaker 2: the tongue, doesn't that it does?
• 7:25
  Speaker 1: Yeah, it's very catchy, very catchy title.
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  Speaker 2: Mmmmmm okay, So we're gonna do our best to explain
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  Speaker 2: what this means. So bear with us here. First, what
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  Speaker 2: this article did. It identified four specific, clinically and biologically
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  Speaker 2: distinct subtypes. I want you to remember this from now.
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  Speaker 2: Clinically and biologically, we're gonna unpack what that means. But
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  Speaker 2: those are two specific I'm sorry, two specific terms for
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  Speaker 2: four specific subtypes that they have identified in this study.
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  Speaker 1: And by subtypes, I think what we can broadly say
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  Speaker 1: that that means. If you hear that and you're like,
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  Speaker 1: what are you talking about subtypes, is that if you
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  Speaker 1: have the broad classification of autism spectrum disorders, the notion
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  Speaker 1: being put forward here is that you could actually lump
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  Speaker 1: them into four categories under that umbrella how autism shows up? Right?
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  Speaker 1: Does that that feel like that's a cogent way to
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  Speaker 1: describe them?
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  Speaker 2: I think that makes sense.
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  Speaker 1: Okay, cool. So the researchers collected and analyzed data from
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  Speaker 1: over five thousand autistic individuals, and of course there's way
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  Speaker 1: more than that out in the world, but you got
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  Speaker 1: to go somewhere. So that was their pool of people.
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  Speaker 1: Five thousand's a pretty decent sample when you're doing some research,
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  Speaker 1: so they got a good end size there. Specifically, what
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  Speaker 1: they were looking for is they were trying to look
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  Speaker 1: at genetic markers and combinations of other traits so that
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  Speaker 1: they could find some pattern in how to then classify
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  Speaker 1: sort of how this shows up in these different silos
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  Speaker 1: of characteristic features.
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  Speaker 2: Right, and so the team describes using what they what
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  Speaker 2: they called as a person centered approach that included identify
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  Speaker 2: over two hundred and thirty separate traits in each individual.
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  Speaker 2: These traits included behaviors and characteristic That's a lot, I mean,
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  Speaker 2: that's that's like, that sounds like, you know, when we're
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  Speaker 2: talking about five thousand people, that's at least two hundred
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  Speaker 2: and thirty separate traits from at least five thousand people.
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  Speaker 2: This is a heavy duty study.
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  Speaker 1: Yeah, that's a lot. I'm trying to imagine, like if
• 9:20
  Speaker 1: someone said tell me two hundred and thirty things about yourself,
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  Speaker 1: I'm like, would I would I be able to get
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  Speaker 1: to two hundred and thirty? Yeah, that seems like a lot.
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  Speaker 2: It feels a lot. So these traits included behaviors, characteristics
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  Speaker 2: related to social engagement, stereotopy, developmental milestones, lots of different things.
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  Speaker 2: And this original identification of traits did not include identifying
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  Speaker 2: genetic markers or links to single traits. This is actually
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  Speaker 2: important for the study because they were able to link
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  Speaker 2: traits back to those specific genetic markers independently and across subjects.
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  Speaker 2: They weren't looking for the genetic markers at the same
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  Speaker 2: time they were looking at the traits. They gathered all
• 9:52
  Speaker 2: trades first and then they went back and looked at
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  Speaker 2: genetic markers. Is in relation to those traits, right.
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  Speaker 1: So I guess the way you could sort summarize that
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  Speaker 1: as they're like, we find these categories of behavioral traits,
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  Speaker 1: and we did the typing of the genetics of these individuals,
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  Speaker 1: and we're going to see can we link those categories
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  Speaker 1: to the genetics and see like it's common enough among
• 10:16
  Speaker 1: this genetic marker that we're going to link those the trait,
• 10:19
  Speaker 1: the behavioral trait and the genetic marker together to say
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  Speaker 1: this forms a subtype, and this is like a classification
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  Speaker 1: if you will, right.
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  Speaker 2: Yes, exactly.
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  Speaker 1: So this resulted in the findings that there were clinically
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  Speaker 1: relevant autism subtypes which were linked to those distinct genetic
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  Speaker 1: profiles because they could make an association between the prevalence
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  Speaker 1: of a genetic marker and the behaviors that were associated
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  Speaker 1: with that category that could then be linked to that
• 10:45
  Speaker 1: genetic marker. So they say, quote, understanding the genetics of
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  Speaker 1: autism is essential for revealing the biological mechanisms that contribute
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  Speaker 1: to the condition, enabling earlier and more accurate diagnosis and
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  Speaker 1: guiding personalized care.
• 11:00
  Speaker 2: Quote. And I think that there's a lot to say
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  Speaker 2: about that. There's some questions, some comments and things, but
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  Speaker 2: I do think it's really important they're leaning on this
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  Speaker 2: idea of personalized care in individualized care. I mean, when
• 11:12
  Speaker 2: we go work with folks, we spend so much time
• 11:14
  Speaker 2: doing individualized treatment that like this is this is I
• 11:17
  Speaker 2: think a really great look at like or at least
• 11:20
  Speaker 2: a great idea to be going. We're going to look
• 11:22
  Speaker 2: at personalized care like important specific care for this individual
• 11:26
  Speaker 2: and this individual alone. And that's that's a really big deal.
• 11:28
  Speaker 1: For sure. We'll get more into sort of our thoughts
• 11:32
  Speaker 1: around this as we're wrapping up this discussion, because you
• 11:35
  Speaker 1: might be like wondering, like I don't know, for people
• 11:38
  Speaker 1: who listen to this, we tend to insert our own
• 11:40
  Speaker 1: thoughts about this as we go. Sometimes we save it
• 11:43
  Speaker 1: for the end, and that's kind of the plan today,
• 11:45
  Speaker 1: I think, is let's just talk through it and then
• 11:47
  Speaker 1: we can give a little bit more in terms of
• 11:51
  Speaker 1: how we are thinking about this as a couple of
• 11:54
  Speaker 1: people who have worked in this field. Yeah, and also
• 11:56
  Speaker 1: understand that like those are going to be our opinion,
• 11:58
  Speaker 1: but we do want to just make sure we can
• 12:00
  Speaker 1: through the science part first.
• 12:01
  Speaker 2: Yeah. Absolutely, So we're gonna take a quick ad break.
• 12:04
  Speaker 2: And this is something I learned while I was in
• 12:05
  Speaker 2: Canada is that our Canadian friends don't hear ads. So
• 12:09
  Speaker 2: what they hear is they hear us lead up to
• 12:11
  Speaker 2: the AD and then go right back into the episode
• 12:13
  Speaker 2: without a single AD showing up. Wow, at least I
• 12:16
  Speaker 2: had somebody tell me that. And they also told me
• 12:18
  Speaker 2: that I have an AD prep voice that has become
• 12:22
  Speaker 2: a cmo R for them, So they start cringing when
• 12:25
  Speaker 2: they hear me prepare for an AD, and then they
• 12:28
  Speaker 2: and then they and then no ad ever comes, which
• 12:31
  Speaker 2: is like this whole thing. So it's a really kind
• 12:32
  Speaker 2: of funny thing. So our Canadian friends, if anybody up
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• 12:36
  Speaker 2: an AD after this.
• 12:44
  Speaker 1: All right, we're back, And if you are in Canada,
• 12:47
  Speaker 1: then we're really back very quickly. But I guess surprise
• 12:52
  Speaker 1: too many of the other people. You probably heard an
• 12:54
  Speaker 1: AD for some kind of medication or something. Who knows. Yeah,
• 12:57
  Speaker 1: but let's let's get into the four sub tie or
• 13:00
  Speaker 1: phenotype classes that were identified in this recent research.
• 13:04
  Speaker 2: Yeah. So for this section, it's important note specifically a
• 13:06
  Speaker 2: term that comes up a few times Denovo mutations. So
• 13:10
  Speaker 2: Denovo mutations refer to a quote genetic alteration that is
• 13:14
  Speaker 2: present for the first time in one family member as
• 13:17
  Speaker 2: a result of a variation or mutation in a germ cell,
• 13:20
  Speaker 2: which is Spermer egg of one of the parents, or
• 13:23
  Speaker 2: a variant that arises in a fertilized egg itself during
• 13:27
  Speaker 2: early embryogenesis, and that comes from the National Cancer Institute.
• 13:31
  Speaker 1: So to put this in simple terms, the mutation is
• 13:34
  Speaker 1: expressed for the first time due to variation in one
• 13:37
  Speaker 1: of the parents, but the parents do not have the
• 13:39
  Speaker 1: expressed mutation themselves, but in the gammytes in the Spermer
• 13:44
  Speaker 1: egg that they produce.
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  Speaker 2: Yep, you nailed it. So the first phenotype is labeled
• 13:48
  Speaker 2: social and behavioral challenges. What this means is individuals with
• 13:52
  Speaker 2: this marker may be more prone to social challenges and
• 13:54
  Speaker 2: or stereotopy. They may reach general developmental milestones at a
• 13:58
  Speaker 2: pace similar to the majority of children. They may also
• 14:00
  Speaker 2: experience higher rates of comorbidities related to anxiety, depression, ADHD
• 14:05
  Speaker 2: or OCD.
• 14:06
  Speaker 1: That sounds about right. Co morbidity autism and between autism
• 14:11
  Speaker 1: and ADHD and things like depression is so high. So
• 14:14
  Speaker 1: it'd be interesting to see the extent to which the
• 14:16
  Speaker 1: co morbidity exists more among this subtype as they've identify
• 14:20
  Speaker 1: it than others. Yeah, but anyway, this was the largest
• 14:23
  Speaker 1: group in the study. This accounted for about thirty seven
• 14:26
  Speaker 1: percent of participants that were linked to this marker, and
• 14:29
  Speaker 1: so out of four subtypes, over a third of them
• 14:32
  Speaker 1: were in this group, meaning that this is not equally
• 14:35
  Speaker 1: distributed among subtypes.
• 14:37
  Speaker 2: Yeah, exactly. Now. The second subtype was called mixed ASD
• 14:41
  Speaker 2: with developmental delay, and about nineteen percent of participants were
• 14:44
  Speaker 2: found to have this phenotype. And again these were folks
• 14:46
  Speaker 2: that were likely to reach certain developmental milestones. It may
• 14:49
  Speaker 2: not show anxiety depression, but they may have some stereotopy
• 14:53
  Speaker 2: and social challenges and some other type of developmental delay
• 14:56
  Speaker 2: they may have, you know, maybe they have some challenges walking,
• 14:59
  Speaker 2: or they may not communicate as early they do it
• 15:02
  Speaker 2: some milestones, not all the milestones, and that developmental delay
• 15:05
  Speaker 2: exists with them.
• 15:06
  Speaker 1: The next subtype number three if you will, if you're
• 15:09
  Speaker 1: trying to keep track, this is moderate challenges. So these
• 15:14
  Speaker 1: folks are more likely to show common well you might
• 15:17
  Speaker 1: think of as common. I guess you could sort of
• 15:19
  Speaker 1: like lump it into broad interpretations of what might be
• 15:22
  Speaker 1: considered common or core autism related behaviors, but less strongly
• 15:26
  Speaker 1: than other groups. They're likely to achieve developmental milestones, and
• 15:31
  Speaker 1: these folks do not experience co occurring psychiatric conditions. And
• 15:35
  Speaker 1: this paper indicates that this group actually makes up one
• 15:38
  Speaker 1: of the second largest chunks here. This is it is
• 15:40
  Speaker 1: the second largest chunk. It's about thirty four percent of
• 15:44
  Speaker 1: the total sample. So between moderate challenges and social and
• 15:47
  Speaker 1: behavioral challenges, that is over sixty percent. Mater of fact,
• 15:51
  Speaker 1: that's over seventy percent of the entire population. And so
• 15:55
  Speaker 1: the remaining thirty percent is split among the other two subtypes.
• 15:59
  Speaker 2: I also think that as an important statistic that we'll
• 16:02
  Speaker 2: talk about later. Yeah, And then the final group is
• 16:05
  Speaker 2: labeled broadly affected, and this is the group that appears
• 16:08
  Speaker 2: to be the most severely impacted with a wider range
• 16:11
  Speaker 2: of concerns related to challenging behavior, developmentalays, social and communication difficulties, stereotopy,
• 16:15
  Speaker 2: and comorbidities. This is the smallest group, the smallest group
• 16:19
  Speaker 2: of all the subtypes of about ten percent of the participants.
• 16:22
  Speaker 2: But this group actually showed the highest proportion of Dnovo mutations.
• 16:28
  Speaker 2: So this is the first group that those mutations that
• 16:29
  Speaker 2: we showed that talked about earlier, this was had the
• 16:31
  Speaker 2: highest impact, the most what they described is the most
• 16:33
  Speaker 2: severely impacted and had the highest proportion of those Denovo mutations.
• 16:38
  Speaker 1: It's going to be important to remember these as we
• 16:40
  Speaker 1: start to talk through the implications of this as well,
• 16:43
  Speaker 1: which because of how this is showing up in politics
• 16:49
  Speaker 1: as right in like sort of contemporary discussions and what
• 16:53
  Speaker 1: we'll get back to that. But an important thing here
• 16:56
  Speaker 1: is that the first author, Ivia Littmann, says about this quote,
• 17:01
  Speaker 1: these findings are powerful because the classes represent different clinical
• 17:05
  Speaker 1: presentations and outcomes, and critically, we were able to connect
• 17:09
  Speaker 1: them to distinct underlying biology end quote. So they're specifically
• 17:14
  Speaker 1: pointing out that what is different about this approach relative
• 17:18
  Speaker 1: to how we have talked about, researched and understood autism
• 17:23
  Speaker 1: in the past is we're now saying that they can
• 17:27
  Speaker 1: look at the genetics that are specifically related to the
• 17:32
  Speaker 1: way that the autism shows up for the people that
• 17:35
  Speaker 1: have that diagnosis, where you look for it and you
• 17:39
  Speaker 1: see how the variety of ways that people experience the
• 17:42
  Speaker 1: symptoms of an autism diagnosis, how it presents in those individuals.
• 17:46
  Speaker 1: There is now an underlying genetic marker that they can
• 17:49
  Speaker 1: turn to and say that we've seen a correlation between
• 17:53
  Speaker 1: this and how it presents, which is very different than
• 17:55
  Speaker 1: we've ever known or talked about or had access to
• 17:58
  Speaker 1: the information before.
• 18:01
  Speaker 2: Yeah, there's like a I feel like what might be
• 18:04
  Speaker 2: assumed as a level of precision that we haven't had before. Yeah,
• 18:07
  Speaker 2: precision and predictability. I would say, it's like and that's
• 18:10
  Speaker 2: really kind of what maybe is like. One of the
• 18:11
  Speaker 2: big implications of this is that I can identify this
• 18:14
  Speaker 2: particular genetic marker, which means I can assume with high
• 18:18
  Speaker 2: predictability that you're going to see it presented this way,
• 18:20
  Speaker 2: which is which means that you can get this level
• 18:22
  Speaker 2: of care. And the authors actually go on and they
• 18:24
  Speaker 2: say they actually note that other biological processes may influence
• 18:27
  Speaker 2: these subtypes. They say, specifically, what we're seeing is not
• 18:30
  Speaker 2: just one biological story of autism. But multiple distinct narratives,
• 18:34
  Speaker 2: and I think that's important too, Like they're not going
• 18:36
  Speaker 2: if you have this, you're gonna be this. They're saying, yes,
• 18:39
  Speaker 2: this is one thing, but like we've seen pretty consistently
• 18:42
  Speaker 2: that this particular marker is an indicator that you might
• 18:45
  Speaker 2: see these types of behaviors, these types of presentations of
• 18:49
  Speaker 2: the disorder, and these folks with this with this marker.
• 18:52
  Speaker 1: I want to go back to to what you were
• 18:54
  Speaker 1: saying about this level of precision, because it strikes me
• 18:57
  Speaker 1: that I think that a lot of peop people think
• 19:00
  Speaker 1: that this was the level of precision that people have
• 19:03
  Speaker 1: been operating at for a long time when diagnosing autism. Yes,
• 19:07
  Speaker 1: Like I think that they hear there's a diagnosis of
• 19:10
  Speaker 1: autism and they're like, well, that it's settled. This is
• 19:13
  Speaker 1: concrete now, Like they must know because the level of
• 19:17
  Speaker 1: science is such that if they can make this diagnosis,
• 19:20
  Speaker 1: then there is not a shadow of a doubt that
• 19:22
  Speaker 1: it's wrong. And that's not how it's been operating. Like
• 19:26
  Speaker 1: many many mental health diagnoses are like, well, you answered
• 19:31
  Speaker 1: this questionnaire in this way, so that is good enough
• 19:34
  Speaker 1: to say you meet the criteria for this diagnosis and
• 19:38
  Speaker 1: there's some that are like, we observed this set of
• 19:41
  Speaker 1: behaviors this time and within this time framework that meets
• 19:46
  Speaker 1: the qualifications of this diagnosis. So this is a new
• 19:50
  Speaker 1: level of precision that I think a lot of people
• 19:52
  Speaker 1: believed was being brought to diagnostic criteria before that it
• 19:58
  Speaker 1: simply wasn't and so on. Fortunately, I think the experience
• 20:01
  Speaker 1: that people have now is like, now there's a greater
• 20:05
  Speaker 1: level of precision, and they're almost going to be like, well,
• 20:08
  Speaker 1: didn't we always have that? Why is this new? I
• 20:11
  Speaker 1: don't know. I'm interested in sort of the perception that
• 20:15
  Speaker 1: people have had about what it meant to getting diagnosis
• 20:18
  Speaker 1: in the past, because I gotta tell you, there is
• 20:21
  Speaker 1: a shockingly large number of diagnoses where to achieve that
• 20:25
  Speaker 1: diagnosis you fill out a questionnaire. Yeah that's a thing.
• 20:28
  Speaker 1: That is a thing, Yeah, exactly.
• 20:30
  Speaker 2: And I think the other thing that stands out to
• 20:32
  Speaker 2: me in this particular section of the article when they
• 20:34
  Speaker 2: talk about this is the level of folks that are
• 20:39
  Speaker 2: likely to have an autism diagnosis but do not present
• 20:43
  Speaker 2: in what is often the stereotypical way that autism shows up,
• 20:46
  Speaker 2: Like you're going to have over seventy percent of autistic
• 20:49
  Speaker 2: folks that like are somewhat I mean, according to this article,
• 20:53
  Speaker 2: reported to be less impacted than ten percent, which is
• 20:57
  Speaker 2: often what I mean. I don't. I think we've worked
• 21:00
  Speaker 2: in this space for a long time. I generally work
• 21:02
  Speaker 2: with the folks who could be described as either moderately
• 21:05
  Speaker 2: no I'm sorry, mixed ASD with development delay, or broadly affected.
• 21:09
  Speaker 2: So I work with that thirty percent that operates at
• 21:12
  Speaker 2: that on those subtypes. Yeah, But like the broadly effective
• 21:15
  Speaker 2: folks are the folks that I often get called in
• 21:17
  Speaker 2: to work with, Like I get I work with autistic
• 21:20
  Speaker 2: people that barely communicate or don't communicate at all, that
• 21:23
  Speaker 2: have missed multiple developmental milestones, like I work with the
• 21:26
  Speaker 2: folks that are often supported by the profound autism society,
• 21:29
  Speaker 2: Like I don't work with the folks that are like
• 21:32
  Speaker 2: portrayed on television as like the quirky doctor that knows
• 21:36
  Speaker 2: how to answer every single question and has like an
• 21:38
  Speaker 2: unlimited knowledge of the of all the medical books. Like
• 21:41
  Speaker 2: that's not usually it. I was actually pretty surprised to
• 21:44
  Speaker 2: find that they were such a low the broadly affective
• 21:47
  Speaker 2: folks were such a low percentage comparatively. But I think
• 21:50
  Speaker 2: that's I think it's important. I think it's important because
• 21:52
  Speaker 2: I think that that shows you the one we've already
• 21:55
  Speaker 2: kind of already known that autism was a spectrum, but
• 21:57
  Speaker 2: like that, I think that really shows to a degree
• 22:00
  Speaker 2: like that there is more of a spectrum. But the
• 22:02
  Speaker 2: other side is that it's a hidden disability. Like you've
• 22:05
  Speaker 2: got folks that are diagnosed autistic and have very mild symptoms,
• 22:10
  Speaker 2: but are still impacted because of the comorbidities, because of
• 22:14
  Speaker 2: their own symptoms with autism. Like you've got all these
• 22:17
  Speaker 2: different things that are I think maybe this opens up
• 22:20
  Speaker 2: that perspective a little bit.
• 22:22
  Speaker 1: Absolutely, Yeah, And I think that that again, it's going
• 22:24
  Speaker 1: to be very relevant as we get to some of
• 22:26
  Speaker 1: the implications about this later, is that that ten percent,
• 22:29
  Speaker 1: and I completely agree the majority of the work that
• 22:32
  Speaker 1: I did was with that ten percent group, the smallest
• 22:35
  Speaker 1: group there of the people who would be classified as
• 22:39
  Speaker 1: broadly affected. And I do I'm going to go back
• 22:41
  Speaker 1: to one more step again, I apologize, but in this
• 22:44
  Speaker 1: discussion about the precision of the diagnosis that even though
• 22:48
  Speaker 1: they're bringing a level of precision that I think is
• 22:50
  Speaker 1: closer to what people thought that already existed this still
• 22:54
  Speaker 1: is not that precise, right, Like it's more precise, but
• 22:58
  Speaker 1: it's not the end all be all. It's not like
• 23:00
  Speaker 1: the job is done now, you know, wipe your hands
• 23:03
  Speaker 1: off and call it a day. Like, there's just now
• 23:06
  Speaker 1: a different level that's being brought to this, and so
• 23:08
  Speaker 1: I think it's important still to understand that there's a
• 23:10
  Speaker 1: lot more work to do to understand more of what's
• 23:13
  Speaker 1: going on. Absolutely, we're going to keep it simple. There's
• 23:17
  Speaker 1: going to be an ad for our American friends and
• 23:20
  Speaker 1: dead air for like one second for Canadian friends. We
• 23:30
  Speaker 1: are back. Let's start getting into some of the implications here.
• 23:33
  Speaker 1: I think it's important to start asking the question the
• 23:37
  Speaker 1: questions that might arise from even being able to present
• 23:42
  Speaker 1: the idea and then some evidence to support that idea
• 23:45
  Speaker 1: that there's such a thing as US autistic subtypes. What
• 23:49
  Speaker 1: does that do for us as clinicians? What does it
• 23:51
  Speaker 1: do for the autistic population? Like? What are the implications here?
• 23:55
  Speaker 2: Yeah, so genetic testing is already part of the standard
• 23:59
  Speaker 2: care for autistic people in the US. I think that's
• 24:01
  Speaker 2: something that is often missed that's already there, But current
• 24:04
  Speaker 2: testing only provides explanations for about twenty percent of those tested.
• 24:08
  Speaker 2: With possible advances like this, we may get that level
• 24:11
  Speaker 2: of precision where we can get far more people tested,
• 24:14
  Speaker 2: we can get far more information about what might be
• 24:16
  Speaker 2: impacting them. And like I said, we're really only seeing
• 24:19
  Speaker 2: a very small portion of those folks that are even
• 24:22
  Speaker 2: being tested, and there's any sort of like usable results
• 24:24
  Speaker 2: with our current testing.
• 24:26
  Speaker 1: Yeah, the greatest implication here is that there is an
• 24:29
  Speaker 1: argument for biological markers as predictors for clinically relevant concerns
• 24:35
  Speaker 1: as they might arise. By identifying the genetic markers, we
• 24:39
  Speaker 1: can I guess to an extent predict you might predict
• 24:44
  Speaker 1: with greater accuracy than before the types of clinical concerns
• 24:49
  Speaker 1: that might arise throughout the development depending on the subtype
• 24:53
  Speaker 1: that that person belongs to or could potentially belong to
• 24:56
  Speaker 1: based on those genetic markers. So this could potentially lead
• 25:00
  Speaker 1: to more targeted clinical and social supports earlier in the
• 25:04
  Speaker 1: process of providing supports for this person and individualize to
• 25:09
  Speaker 1: that person's unique needs, assuming that it is correct and
• 25:13
  Speaker 1: precise enough to put you on that path.
• 25:17
  Speaker 2: Yeah, and I think the timing of these emerging traits
• 25:19
  Speaker 2: may also be dependent on these subtypes too. Because genes
• 25:23
  Speaker 2: kind of quote switch on and off like and of
• 25:25
  Speaker 2: course I'm not a geneticist, so and I'm not a biologist.
• 25:29
  Speaker 2: I actually like flunked out of biology early on. I
• 25:31
  Speaker 2: was like, I hate this, this is terrible. That's actually
• 25:33
  Speaker 2: the reason I'm not a marine biologist, because that was like,
• 25:35
  Speaker 2: I hate biology. But genes kind of switch on and off.
• 25:38
  Speaker 1: I just like fish, I just like totles.
• 25:41
  Speaker 2: So genes will switch off and on at various stages
• 25:44
  Speaker 2: of development. We may find that these subtypes may also
• 25:47
  Speaker 2: express at different stages. So for some types without developmental delays,
• 25:51
  Speaker 2: these markers may express later in development, whereas those who
• 25:54
  Speaker 2: have who are broadly affected, may see more immediate presentations.
• 25:58
  Speaker 2: So there are other factors here that just saying the
• 26:00
  Speaker 2: markers exist, it also is important to understand when those
• 26:04
  Speaker 2: genes switch on and off and how that's impacted. That
• 26:07
  Speaker 2: might explain why somebody who has pervasive developmental disorder or
• 26:11
  Speaker 2: NOS like or what it's called now that that's kind
• 26:13
  Speaker 2: of pulled into the autum specrum disorder, but like that
• 26:16
  Speaker 2: disorder where like the genes might switch on at a
• 26:18
  Speaker 2: certain age and then all of a sudden you lose
• 26:19
  Speaker 2: a little bit of communication. We don't know that, and
• 26:22
  Speaker 2: I think that's something that we can now start kind
• 26:24
  Speaker 2: of asking questions about now that we understand that these
• 26:26
  Speaker 2: genetic markers exist.
• 26:28
  Speaker 1: Genetics are definitely very complicated in something about which we're
• 26:31
  Speaker 1: still learning a tremendous amount. But you may have heard
• 26:35
  Speaker 1: in our voice already in some of the discussion we've
• 26:38
  Speaker 1: had we are trying to present this essentially with like
• 26:41
  Speaker 1: the kind of narrative that the author's brought to it.
• 26:47
  Speaker 1: There is definitely a note of caution here that we
• 26:50
  Speaker 1: should we should take on and understanding this, I think
• 26:53
  Speaker 1: it's worth worth having a brief conversation here about eugenics,
• 26:57
  Speaker 1: as is probably going to come up. I think again
• 27:00
  Speaker 1: speaking to some of the discussion that's been happening politically,
• 27:05
  Speaker 1: is the idea of autism has been treated as if
• 27:07
  Speaker 1: it's basically a death sentence. The worst thing that could
• 27:11
  Speaker 1: happen to a human autism is the way that people
• 27:14
  Speaker 1: are talking about this, that is not we do not
• 27:16
  Speaker 1: subscribe to this by the way that autism is the
• 27:19
  Speaker 1: worst thing in the world, or even really something that
• 27:22
  Speaker 1: needs to be treated as if it's always a pathological
• 27:26
  Speaker 1: thing to be concerned about, but autism and disability at
• 27:29
  Speaker 1: large has a long history of genetics research and related concerns,
• 27:34
  Speaker 1: mostly dickheads that think eliminating these genetic anomalies is the
• 27:39
  Speaker 1: best thing for humanity. They look at something that has
• 27:42
  Speaker 1: a diagnosis, and because we have labeled it as having
• 27:47
  Speaker 1: a diagnosis, it is therefore something broken. This goes back
• 27:51
  Speaker 1: to the medical model of disability, and that the person
• 27:54
  Speaker 1: who is therefore considered broken by that idea should be cold,
• 27:59
  Speaker 1: or at least vented from contributing any more to humanity
• 28:03
  Speaker 1: because they represent a deviation from the ideal, which is
• 28:07
  Speaker 1: I'm going to use a term here to because I
• 28:09
  Speaker 1: was just in the South, that is hogwash, soph In
• 28:20
  Speaker 1: this space, in a discussion about genetics, you're going to
• 28:24
  Speaker 1: hear people talk about curing genetic variations, fixing them, curing them, whatever.
• 28:29
  Speaker 1: These kind of got discussions will prompt larger discussions that
• 28:32
  Speaker 1: sort of lead down the gross path to eugenics. I
• 28:35
  Speaker 1: would caution folks that as this research emerges and develops,
• 28:39
  Speaker 1: we are cautious to understand the dark history related to
• 28:43
  Speaker 1: this idea of fixing genetic variations and ensure that like
• 28:48
  Speaker 1: we when we notice that that conversation is happening. We
• 28:51
  Speaker 1: catch it and prevent it as much as possible. So
• 28:55
  Speaker 1: I don't think it's a hard stance to say that
• 28:56
  Speaker 1: eugenics is awful. I think we can as a podcast
• 29:01
  Speaker 1: espouse that. I think we can as a species espouse that. Yeah,
• 29:04
  Speaker 1: and we should never be considering this. It's a low bar,
• 29:06
  Speaker 1: but there there are too many people who are not
• 29:09
  Speaker 1: meeting that standard. But yes, eugenics is bad.
• 29:12
  Speaker 2: Yes, in case that wasn't clear now, I think, on
• 29:16
  Speaker 2: the other side, more information isn't bad, but I do
• 29:18
  Speaker 2: think that it can mask more nuance concerns related to
• 29:21
  Speaker 2: the individual. So, for instance, it's great to know that
• 29:23
  Speaker 2: someone has one of these subtypes or a genetic marker,
• 29:26
  Speaker 2: but there are other factors that can contribute to a
• 29:28
  Speaker 2: person's development. For instance, someone with social behavioral challenges, which
• 29:31
  Speaker 2: is the largest group, could also have a limb difference,
• 29:34
  Speaker 2: family history of other diagnoses, an acquired brain injury, et cetera,
• 29:37
  Speaker 2: et cetera, et cetera. Right, we have to remember that
• 29:40
  Speaker 2: biology is not the only predictor of behavior, and it
• 29:43
  Speaker 2: is really only a small portion of it in the
• 29:46
  Speaker 2: large the grand scheme of things biology will maybe maybe
• 29:50
  Speaker 2: lead to or like may set the cajun for certain things,
• 29:54
  Speaker 2: but it's really all about the mechanism by which we engage,
• 29:57
  Speaker 2: Like it's it's how we engage in behavior, it's how
• 29:59
  Speaker 2: we interact, like how our body interacts with each other,
• 30:01
  Speaker 2: and like all those things. It's not the cause of
• 30:04
  Speaker 2: behavior in these situations. And I think it's really important
• 30:07
  Speaker 2: to kind of like reorient to that that it is
• 30:10
  Speaker 2: nature and nurture together that creates behavioral circumstances. Yes, we
• 30:14
  Speaker 2: can't just go, oh, they got this, that's it, Like
• 30:17
  Speaker 2: we have to be really cautious to make sure that
• 30:19
  Speaker 2: we have that balance.
• 30:20
  Speaker 1: Yeah, never one without the other. And man, it is
• 30:23
  Speaker 1: so tempting that people see there is a behavior they
• 30:27
  Speaker 1: find challenging, and the knee jerk solution is always just
• 30:31
  Speaker 1: like call it.
• 30:32
  Speaker 2: I'm just like, yeah, but the behavior do we have?
• 30:35
  Speaker 1: I mean, do we have to start there? Could we
• 30:36
  Speaker 1: maybe like not start there and start somewhere else instead,
• 30:41
  Speaker 1: because I'm like, if we start at some other place
• 30:43
  Speaker 1: that's more compassionate and thoughtful and not stupid, we'll probably
• 30:46
  Speaker 1: much never get to kill it as the solution, right, So, like,
• 30:50
  Speaker 1: I don't it feels like people start there a lot
• 30:52
  Speaker 1: of the time.
• 30:52
  Speaker 2: Yeah.
• 30:53
  Speaker 1: Anyway, last point on this part here I think is
• 30:56
  Speaker 1: this is only one study that we're talking there are
• 31:00
  Speaker 1: more research is definitely needed. Sometimes we find studies like
• 31:03
  Speaker 1: this and we want to run with it because it's
• 31:06
  Speaker 1: so it's so much of a new revelation in the
• 31:09
  Speaker 1: sort of discussion, the space of discussions around topics like this.
• 31:13
  Speaker 1: But we we caution that this is just a single study,
• 31:16
  Speaker 1: which means that the findings need to be replicated before
• 31:20
  Speaker 1: and ideally by independent research groups before we start assuming
• 31:25
  Speaker 1: that we have enough information to say we've got it,
• 31:28
  Speaker 1: let's go. This is very early stage research. The findings
• 31:31
  Speaker 1: are promising, they'll likely lead to other research lines that
• 31:35
  Speaker 1: will continue to inform our thoughts and an understanding of this.
• 31:38
  Speaker 1: But again we're just we're at there are limitations to
• 31:41
  Speaker 1: behold and understand that we're still in early stages.
• 31:44
  Speaker 2: Yes, essentially, what we're saying is, please do not run
• 31:47
  Speaker 2: with this as accepted fact. Like this is the part
• 31:52
  Speaker 2: where you get to be skeptical. You get to go
• 31:53
  Speaker 2: this sounds really nice. I really like where this is going.
• 31:56
  Speaker 2: We need more research to bolster it up, to lift
• 31:58
  Speaker 2: it up to give it more credence. And that's not
• 32:01
  Speaker 2: to say that these researchers are bad researchers. That's not
• 32:04
  Speaker 2: at all what we're saying. We're simply saying that one
• 32:06
  Speaker 2: study does not equal consensus. So we just need a
• 32:09
  Speaker 2: little bit more to kind of like push it forward
• 32:11
  Speaker 2: and to give it more evidence and more backing.
• 32:14
  Speaker 1: Absolutely, all right, let's go ahead and get into then.
• 32:18
  Speaker 1: You know, we're behaviorists. We should get into a behavioral
• 32:21
  Speaker 1: interpretation and understanding of what to take away from this research.
• 32:26
  Speaker 1: But first we are going to get into some more ads.
• 32:29
  Speaker 1: For some of you, we'll be r hey back, Okay,
• 32:42
  Speaker 1: we are back. We're talking about the sort of behavioral
• 32:45
  Speaker 1: interpretation here, and to dive into this, I think we
• 32:47
  Speaker 1: need to make sure we're clear on a few points. Okay. First,
• 32:53
  Speaker 1: behaviorists have this reputation as thinking that biology sometimes that
• 32:58
  Speaker 1: biology is irrelevant. That is not the ethos that is
• 33:02
  Speaker 1: actually foundational to an understanding. As we've described before many
• 33:06
  Speaker 1: times in our discussions and even in this very episode,
• 33:10
  Speaker 1: biology is one of the determinants of behavior. Said another way,
• 33:14
  Speaker 1: maybe we are born with it. It is to say
• 33:16
  Speaker 1: that we are biological organisms. To pretend that biology is
• 33:21
  Speaker 1: not relevant is to suggest that we are not biological organisms,
• 33:24
  Speaker 1: but in fact we are, and that we interact with
• 33:28
  Speaker 1: the world as biological organisms. I think the problem is
• 33:32
  Speaker 1: that most people look at behavior and they're like, well,
• 33:35
  Speaker 1: that's all the biology. That's the only reason they're doing
• 33:37
  Speaker 1: all the things that they're doing. And we keep pushing
• 33:40
  Speaker 1: back on that because there's so much more to say
• 33:44
  Speaker 1: about what's going on with the behavior. We have shown
• 33:46
  Speaker 1: empirically so many times it's not even worth attempting to
• 33:50
  Speaker 1: list the number. Let's just say a trillion because it's
• 33:52
  Speaker 1: going to be close enough to that anyway, A trillion
• 33:54
  Speaker 1: times we have demonstrated that environmental factors influence behavior, and
• 33:59
  Speaker 1: people just keeping that so to keep harping on that.
• 34:02
  Speaker 1: But that is not to say that we don't understand
• 34:04
  Speaker 1: that biology as relevant is completely relevant, right, you can't
• 34:07
  Speaker 1: have behavior without biology, so like, of course it's relevant.
• 34:11
  Speaker 1: But also just people I think misunderstand that point, right.
• 34:15
  Speaker 2: I think the second thing that we have to also
• 34:17
  Speaker 2: point out to is that specific genetic markers can help
• 34:19
  Speaker 2: predict possible behavioral traits that may emerge. But said another way,
• 34:25
  Speaker 2: the more information that we have can tell us what
• 34:28
  Speaker 2: might happen, not what will happen, but what might happen.
• 34:33
  Speaker 2: Genetic markers do not dictate fate. It is not a
• 34:36
  Speaker 2: preordained set of behaviors or problems they're going to come up.
• 34:40
  Speaker 2: It's just telling us that the likelihood might be higher
• 34:42
  Speaker 2: but not certain. I think that's really really important to
• 34:46
  Speaker 2: pin down here.
• 34:47
  Speaker 1: Yes, very good point. Okay, this kind of is I mean,
• 34:53
  Speaker 1: the definition of this. We aren't born with learned behavior
• 34:57
  Speaker 1: because it's learned.
• 34:58
  Speaker 2: Right so much I sometimes you just got to say it,
• 35:02
  Speaker 2: you know, is I mean one hundred percent?
• 35:04
  Speaker 1: Like, you're absolutely right. I think that people think there's
• 35:07
  Speaker 1: these learns They will talk about like a reaction to
• 35:10
  Speaker 1: something like text, and they're like, well, I guess you're
• 35:13
  Speaker 1: just born that way. I'm like to text, our genetics
• 35:17
  Speaker 1: know what kind of text we're going to be encountering
• 35:19
  Speaker 1: in life.
• 35:20
  Speaker 2: Oh my god, to understand that language specifically.
• 35:25
  Speaker 1: Right, Yeah, what a revelation? No, God, come on, Like
• 35:29
  Speaker 1: we're born with the capacity to interpret text, sure, and
• 35:34
  Speaker 1: that's a very interesting thing. But the reaction we have
• 35:38
  Speaker 1: to a specific kind of text, how could biology possibly
• 35:43
  Speaker 1: plan for that? Our biology doesn't know what English is.
• 35:46
  Speaker 1: It doesn't know what Spanish is, It doesn't know what
• 35:49
  Speaker 1: Mandarin is. We don't have genes that code for what
• 35:53
  Speaker 1: language we are going to speak. It is the environment
• 35:56
  Speaker 1: we are raised in, the languages that we are exposed to.
• 36:00
  Speaker 1: We know that one hundred percent. Like that, like the
• 36:02
  Speaker 1: fact that we can speak language biology the language we
• 36:05
  Speaker 1: speak learned, right, But okay, got to say it. I
• 36:08
  Speaker 1: guess yeah, we don't have genetic flagpoles that tell us
• 36:11
  Speaker 1: will have social issues or that tell us that will
• 36:14
  Speaker 1: have aggression. Boy, that one comes up a lot too.
• 36:16
  Speaker 2: Yep.
• 36:17
  Speaker 1: We may have an increased likelihood for those kind of
• 36:21
  Speaker 1: behaviors based on the markers, but it's not a guarantee,
• 36:25
  Speaker 1: Like we might never encounter a situation where that behavior arises.
• 36:29
  Speaker 1: Even if we had those markers. We might not have
• 36:31
  Speaker 1: those markers and still be aggressive. So like it tells
• 36:35
  Speaker 1: us that there is it seems like it's correlated with
• 36:38
  Speaker 1: an increased potential, It does not mean it's going to happen.
• 36:42
  Speaker 2: Right, And I think that's important to point this out
• 36:44
  Speaker 2: here because this is a larger discussion about labels and correlation.
• 36:47
  Speaker 2: It doesn't account for actual experience. Actual experience does alter
• 36:52
  Speaker 2: or change the course of somebody's entire life. I always
• 36:55
  Speaker 2: think about the difference between like I have a family
• 36:58
  Speaker 2: member and myself that are the samege and we have
• 37:02
  Speaker 2: lived two very different lives. Yeah, similar biology, because we
• 37:06
  Speaker 2: come from the same family tree. You're related, Yeah, because
• 37:09
  Speaker 2: we're related, similar circumstances, low socio economic status, parents were
• 37:13
  Speaker 2: together those types of things and have vastly different outcomes.
• 37:18
  Speaker 2: So you could probably look at our genetic markers and
• 37:20
  Speaker 2: find similar markers, but have very very very different sets
• 37:24
  Speaker 2: of behaviors and different outcomes for lots of different reasons. Yeah,
• 37:26
  Speaker 2: so actual experience does make it different. I mean, we
• 37:28
  Speaker 2: grew up in the same town, almost on the same street,
• 37:31
  Speaker 2: so like it's one of those things where our circumstances
• 37:33
  Speaker 2: were as close as they could be without living in
• 37:34
  Speaker 2: the same house. I think it's really important to remember
• 37:37
  Speaker 2: that when we talk about these labels and we talk
• 37:40
  Speaker 2: about this, it doesn't automatically dictate that this person is
• 37:42
  Speaker 2: going to have this outcome, because actual experience does make
• 37:46
  Speaker 2: a difference.
• 37:47
  Speaker 1: Yeah. Yeah, you could clone a seed of some plant
• 37:51
  Speaker 1: plant the original in one planter, the clone in another,
• 37:55
  Speaker 1: and like give one of lots of like fertilizer and
• 37:57
  Speaker 1: sunlight and water and take really good care of it,
• 38:00
  Speaker 1: and the other one you just give it nothing whatsoever.
• 38:01
  Speaker 1: And you will get very different plants even though they
• 38:04
  Speaker 1: are clones, right, And there are lots of factors you
• 38:07
  Speaker 1: can manipulate that are going to change the kind of
• 38:10
  Speaker 1: plants that you get, even though they are genetically identical.
• 38:13
  Speaker 1: You will get different kinds of plants because you've done
• 38:17
  Speaker 1: different things to their environments. And behavior is vastly, vastly
• 38:21
  Speaker 1: more complicated than that. So let's take, for instance, someone
• 38:25
  Speaker 1: who is labeled as broadly affected. This is that ten
• 38:28
  Speaker 1: percent category where it's like they have some of the
• 38:30
  Speaker 1: most salient impacts related to that diagnosis. Someone who's severely
• 38:36
  Speaker 1: impacted under this category, we should expect behavioral challenges or
• 38:41
  Speaker 1: severe deficits. However, this does not account for things like
• 38:44
  Speaker 1: personal circumstances, access to care, cultural perspectives, the myriad of
• 38:49
  Speaker 1: factors that could shift behavior in many different directions. Someone
• 38:55
  Speaker 1: who is raised with a huge amount of structure and
• 38:57
  Speaker 1: support and like people who are experts at guiding the
• 39:01
  Speaker 1: development of an acquisition of new skills, versus someone who's
• 39:05
  Speaker 1: the parents who are neglectful and don't care or don't
• 39:08
  Speaker 1: know how to participate, and maybe only rely on things
• 39:11
  Speaker 1: like punishment, and they don't really communicate with their child.
• 39:14
  Speaker 1: Those two children, even if they were genetically identical, would
• 39:17
  Speaker 1: turn out very different in those circumstances. And when we're
• 39:20
  Speaker 1: most of these are not genetically identical anyway, but those
• 39:24
  Speaker 1: circumstances are going to play a huge role.
• 39:26
  Speaker 2: Right, So I think we can illustrate this with using
• 39:29
  Speaker 2: two other examples. I think you can use Down syndrome
• 39:31
  Speaker 2: and generalized anxiety disorder as two specific labels for different
• 39:35
  Speaker 2: conditions that people have. Right, one is a disability related
• 39:38
  Speaker 2: to genetic variations, and the other one is a mental
• 39:40
  Speaker 2: health diagnosis that's an anxiety disorder specifically in both situations.
• 39:44
  Speaker 2: In both cases, the label establishes a set of expected outcomes.
• 39:47
  Speaker 2: You expect certain traits, certain behaviors, certain experiences out of
• 39:51
  Speaker 2: those folks, including those behaviors that we expect to see generally,
• 39:54
  Speaker 2: Like when we've talked about somebody with Down syndrome, we
• 39:56
  Speaker 2: expect some level of developmental disability. We expect something like
• 39:59
  Speaker 2: maybe some some porous skill acquisition. In some ways, we
• 40:03
  Speaker 2: generalize anxiety disorder, we expect to see panics, panic attacks.
• 40:06
  Speaker 2: We expect to see these different things. But we know
• 40:09
  Speaker 2: here the beauty is in the variation. We also know
• 40:13
  Speaker 2: that people the beauty is in the experience that people
• 40:16
  Speaker 2: will change and alter, they'll gain skills. You'll have folks that,
• 40:19
  Speaker 2: regardless of those labels, they will have unique skill sets.
• 40:23
  Speaker 2: I was going to use the example of juggling, right,
• 40:25
  Speaker 2: There are some people who can juggle and some people
• 40:27
  Speaker 2: who can't. I cannot juggle. And that's the beauty of
• 40:29
  Speaker 2: behavioral variation in general, right, Like, that's the beauty of
• 40:32
  Speaker 2: that is Like, we're gonna see variations across labels, across people,
• 40:36
  Speaker 2: across circumstances. It's a really wonderful thing.
• 40:40
  Speaker 1: Is there a genetic marker that tells you whether or
• 40:42
  Speaker 1: not you'd be good at juggling? No, because you just
• 40:45
  Speaker 1: though't something you practice, Like right, I think there are
• 40:49
  Speaker 1: going to be people who struggle with motor coordination that
• 40:51
  Speaker 1: might be related to some kind of medical diagnosis, and
• 40:54
  Speaker 1: it might be tougher for them to learn how to juggle.
• 40:56
  Speaker 1: Maybe you could say something about that, but it certainly
• 40:58
  Speaker 1: won't tell you anything about particularly think about things like
• 41:02
  Speaker 1: mental health conditions. The extent to which that would be
• 41:05
  Speaker 1: that predictive of something like talent or skill, right like
• 41:08
  Speaker 1: where you spend your time and imagine growing up in
• 41:10
  Speaker 1: a time where juggling was not a thing that was
• 41:12
  Speaker 1: known to the culture that you were raised in time
• 41:15
  Speaker 1: or a culture. I guess, would you ever be good
• 41:17
  Speaker 1: at juggling even if you had that genetic marker they've identified, No,
• 41:20
  Speaker 1: because you would have never ever tried so like right',
• 41:24
  Speaker 1: It's just not as black and white as I think
• 41:26
  Speaker 1: a lot of people seem to think that it is.
• 41:29
  Speaker 2: So going back to the example of DOWNS in German
• 41:31
  Speaker 2: generalizing xiety disorder, someone with DOWNS in GERUM may have
• 41:34
  Speaker 2: significant challenging behavior or they may never need behavioral interventions
• 41:38
  Speaker 2: throughout their life. There you might see the two of
• 41:40
  Speaker 2: those in those situations. Similarly, the spectrum of behaviors we
• 41:43
  Speaker 2: may find across individuals with generalized anxiety disorder can include
• 41:46
  Speaker 2: more severe clinical concerns such as substance use to mother
• 41:49
  Speaker 2: experiences like minor avoidance behavior somewhere in between where you
• 41:52
  Speaker 2: have major panic attacks. You can see lots of different
• 41:54
  Speaker 2: things in there. The variation, again is part of the
• 41:57
  Speaker 2: beauty of this and really understanding that those diagnoses do
• 42:01
  Speaker 2: not automatically dictate how somebody is going to act in
• 42:04
  Speaker 2: every circumstance.
• 42:06
  Speaker 1: Yeah, exactly, even the ones that are based on the behavior,
• 42:10
  Speaker 1: that that behavior may not occur again given the circumstances
• 42:14
  Speaker 1: under which it arose in the first place. Because, as
• 42:18
  Speaker 1: we've talked about in a couple of different places in
• 42:20
  Speaker 1: past episodes, like that, a whole saying the past behavior
• 42:24
  Speaker 1: is the best predictor of future behavior is just wrong.
• 42:27
  Speaker 1: It's just wrong. It's right, the past circumstances and what
• 42:30
  Speaker 1: you learn from that situation is the best predictor of
• 42:33
  Speaker 1: future behavior, right, because you will have had an opportunity
• 42:35
  Speaker 1: to do something in a similar situation, and then there
• 42:38
  Speaker 1: was some outcome that told you, do you do that
• 42:40
  Speaker 1: thing more in the way that you did it, or
• 42:41
  Speaker 1: do you do it in a different way than maybe
• 42:43
  Speaker 1: how you did it? Do you maybe just escape the
• 42:45
  Speaker 1: situation altogether. Point being that, like, just even classifying things
• 42:50
  Speaker 1: based on their behavior you would think would be predictive,
• 42:52
  Speaker 1: except that it needs to factor in context and the
• 42:55
  Speaker 1: learning that happened inside of that context. So no, right,
• 43:01
  Speaker 1: Like anyway, the point here is that behavioral classification occurring
• 43:05
  Speaker 1: before learning history is developed is very misleading, and I
• 43:09
  Speaker 1: think people are going to be tempted to do this
• 43:11
  Speaker 1: and jump the gun. It's not necessarily unhelpful, but it
• 43:14
  Speaker 1: can be very misleading, and I think it can people
• 43:17
  Speaker 1: can shoot too early at what they think is going
• 43:21
  Speaker 1: to be the best course of action before they've had
• 43:23
  Speaker 1: an opportunity to observe how things are actually unfolding. Right,
• 43:26
  Speaker 1: And if we know what kinds of potential problems can occur,
• 43:29
  Speaker 1: then we can try to attempt that the right resources
• 43:32
  Speaker 1: are in place to prevent the development of those And
• 43:34
  Speaker 1: if they never develop, we won't know whether or not
• 43:37
  Speaker 1: it was providing those supports or if they weren't going
• 43:39
  Speaker 1: to develop. But honestly, who cares? Like the fact is
• 43:42
  Speaker 1: it didn't develop, Like we at least did something, and
• 43:46
  Speaker 1: now we have some reason like things are turning out. Okay.
• 43:49
  Speaker 1: We should not expect that someone who has said characteristic
• 43:52
  Speaker 1: will have said characteristics simply because of the label. So
• 43:57
  Speaker 1: broader discussion here, I guess just about how we interpret
• 43:59
  Speaker 1: things diagnoses and genetics, but I think is relevant here.
• 44:03
  Speaker 2: Yeah, yeah, I really don't have much more to say
• 44:05
  Speaker 2: beyond this right now, in this moment, but I do
• 44:07
  Speaker 2: think it's important to remember this as a single study.
• 44:10
  Speaker 2: And I think what's happened is this this study caught fire,
• 44:13
  Speaker 2: and it's and for a good reason. It's an interesting study,
• 44:16
  Speaker 2: it's a fascinating study. It's a powerful study. However, it's
• 44:20
  Speaker 2: a it started conversations. I mean, here we are doing
• 44:23
  Speaker 2: a whole podcast on it. Yeah, you know. But I
• 44:26
  Speaker 2: do think that there is like this level of just
• 44:28
  Speaker 2: understanding that it's one study. We need your applications. It's
• 44:32
  Speaker 2: not sufficient for adoption, it's not sufficient for consensus because
• 44:35
  Speaker 2: we do not have consensus. We need more research. So promising,
• 44:40
  Speaker 2: but let's be cautious and let's dip our toes in
• 44:42
  Speaker 2: the water a little bit and just understand that there
• 44:45
  Speaker 2: are lots of big conversations that are going to come
• 44:47
  Speaker 2: out of this.
• 44:48
  Speaker 1: I actually do have two quick things I was thinking
• 44:51
  Speaker 1: about that we should discuss. The first one is an
• 44:54
  Speaker 1: ad I knew it all right, we're back, So thing
• 45:07
  Speaker 1: one is downing two. There's an implication about this politically
• 45:11
  Speaker 1: as well, and because as we've described, there's in the
• 45:15
  Speaker 1: United States, RFK Junior is doing his best to kill
• 45:17
  Speaker 1: all of us, and he's got a target on the
• 45:20
  Speaker 1: heads of all the people who are autistic, and he's
• 45:23
  Speaker 1: gone on to say things about people who are autistic,
• 45:26
  Speaker 1: like they don't pay taxes, they don't create works of art,
• 45:29
  Speaker 1: they don't write poems, they can't do anything. Basically is
• 45:32
  Speaker 1: his sort of his sort of take on it. And
• 45:35
  Speaker 1: you may have noticed as we're describing these subtypes that
• 45:38
  Speaker 1: he's describing what would probably be fall into that broadly
• 45:42
  Speaker 1: affected subtype, that ten percent. And he keeps a lot
• 45:47
  Speaker 1: of people in the anti vax space who are really
• 45:49
  Speaker 1: concerned about people having autism has been the worst thing ever.
• 45:53
  Speaker 1: They frequently point to the increase in the prevalence of autism,
• 45:57
  Speaker 1: which actually, to be fair, has tapered off the last
• 46:00
  Speaker 1: decade and a half or so. And the reason that
• 46:03
  Speaker 1: we saw autism was on the rise to begin with
• 46:06
  Speaker 1: had to do with a lot of factors. And we
• 46:07
  Speaker 1: talked about this in some past episode. I don't even
• 46:10
  Speaker 1: remember which, although I do think that we mentioned it
• 46:12
  Speaker 1: in the Asperger syndrome discussion. But part of it was
• 46:16
  Speaker 1: recognition of the symptoms, Like it just wasn't very common
• 46:20
  Speaker 1: for a long time because people weren't diagnosing it, and
• 46:22
  Speaker 1: then they started diagnosing it. And they started recognizing the
• 46:25
  Speaker 1: symptoms more. That was one. Another one is that like
• 46:29
  Speaker 1: criteria for or like mandating support from insurance became a thing,
• 46:34
  Speaker 1: which meant that like people were more likely to look
• 46:36
  Speaker 1: for that as what the diagnosis could be because that
• 46:39
  Speaker 1: would provide funding than for intervention and support for that disability.
• 46:43
  Speaker 1: And then the third one, there's more than three, but
• 46:45
  Speaker 1: the third one I'm gonna mention is that they collapsed
• 46:48
  Speaker 1: all versions of the spectrum of autism into one label.
• 46:53
  Speaker 1: So now you what people who are being called like
• 46:57
  Speaker 1: pervasive developmental disorders. Yeah, yeah, that was its own thing.
• 47:03
  Speaker 1: Now it's called autism. So the numbers that were over
• 47:05
  Speaker 1: there are now subsumed over another one. So anyway, like,
• 47:10
  Speaker 1: those are many of the features that led to the
• 47:11
  Speaker 1: increase in here. But as awareness has spread about autism
• 47:15
  Speaker 1: and a lot of communication, I think ultimately that's mostly
• 47:17
  Speaker 1: been a good thing for the autistic community. They do
• 47:20
  Speaker 1: see these numbers swelling in terms of the rates of
• 47:23
  Speaker 1: people who are communicating autism and who again, that's as
• 47:26
  Speaker 1: largely plateaued in the last decade and a half. But
• 47:28
  Speaker 1: RFK Junior points to this and says, like, look at
• 47:31
  Speaker 1: this huge problem that we have. The vast majority of
• 47:36
  Speaker 1: those diagnoses are the other ones that we described. It's
• 47:40
  Speaker 1: the mixed ASD with developmental delay, the social and behavioral
• 47:44
  Speaker 1: challenges people, the people who are not how he described
• 47:48
  Speaker 1: right as like the ten percent ten percent, and like
• 47:51
  Speaker 1: the ten percent that made up pretty much everyone who
• 47:53
  Speaker 1: is being diagnosed before. But the spectrum nature of this
• 47:57
  Speaker 1: that is includes those other types. Those have way outpaced
• 48:02
  Speaker 1: the sort of broadly affected group, and so there's actually
• 48:05
  Speaker 1: some kind of utility and building these subclasses to help
• 48:08
  Speaker 1: show like the people that RFK Junior is so afraid
• 48:12
  Speaker 1: of that might fall into the nonverbal camp, that might
• 48:16
  Speaker 1: fall into the like requiring support for a lot of
• 48:18
  Speaker 1: physical things, even like learning how to wash your hands
• 48:21
  Speaker 1: and brush your teeth and put on clothes, Like the
• 48:23
  Speaker 1: people who fall into that camp. That's only ten percent, right.
• 48:26
  Speaker 1: The growing number is coming from recognizing the spectrum as
• 48:30
  Speaker 1: being applied to things like the people in the social
• 48:32
  Speaker 1: and behavioral challenges category and the mixed ASD with developmental
• 48:35
  Speaker 1: delay category. It's like those are the spots where there's
• 48:40
  Speaker 1: the most recognition is now occurring. And he's like pointing to, like,
• 48:44
  Speaker 1: look at all these cases of autism like those aren't anyway,
• 48:47
  Speaker 1: I think you know what I'm saying, right, Like, Yeah,
• 48:49
  Speaker 1: the whole point is I think there is some political expediency,
• 48:52
  Speaker 1: and I don't think that was the goal of the authors,
• 48:54
  Speaker 1: but I could be wrong, but I think there's some
• 48:55
  Speaker 1: political expediency and helping to specifically isolate here, Like where
• 49:01
  Speaker 1: is it you think that there's such a massive problem.
• 49:04
  Speaker 1: And again, even if we have these people who are
• 49:07
  Speaker 1: in the category of the like broadly affected, it doesn't
• 49:10
  Speaker 1: mean there's like they're not bad people. We're not trying
• 49:12
  Speaker 1: to rid the world of them. They're just people who
• 49:14
  Speaker 1: need extra support. Like let's let's provide the extra support.
• 49:17
  Speaker 1: So I don't know, it's I think those an important
• 49:19
  Speaker 1: feature to just sort of get into here.
• 49:21
  Speaker 2: Yeah, and I think you nailed it. I think one
• 49:24
  Speaker 2: percent perfect.
• 49:25
  Speaker 1: I think we've said what we need to say about
• 49:27
  Speaker 1: the autism subtype. So let's go ahead and wrap this
• 49:29
  Speaker 1: one up here. Is there anything you'd like to add
• 49:32
  Speaker 1: before we get to our sort of closing comments. Uh no,
• 49:36
  Speaker 1: If any of you are new here, I wanted to
• 49:38
  Speaker 1: let you know that we are going to give some recommendations.
• 49:41
  Speaker 1: That's the thing that we do and it's really fun.
• 49:42
  Speaker 1: So stick around through the credit so we can get
• 49:44
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• 49:46
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• 49:47
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• 49:49
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• 49:52
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• 49:55
  Speaker 1: the reason that they're actually here is at the end
• 49:57
  Speaker 1: of each discussion. At the end of each discussion, I
• 50:00
  Speaker 1: can say words, I will read the list of names
• 50:02
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• 50:04
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• 50:07
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• 50:11
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• 50:13
  Speaker 2: You're the best. You're the best, You're the best of
• 50:14
  Speaker 2: your best.
• 50:15
  Speaker 1: Writing and fact checking from Shane and myself. Thank you
• 50:18
  Speaker 1: so much for putting together the notes on this one today. Shane, Hey,
• 50:21
  Speaker 1: thank you.
• 50:21
  Speaker 2: This one was fun.
• 50:22
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• 50:25
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• 50:27
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• 50:30
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• 50:31
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• 50:34
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• 50:36
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• 50:44
  Speaker 1: the cool stuff that you hear in podcasts. It's really
• 50:46
  Speaker 1: good helps us. Yeah, but yeah, but I think that
• 50:49
  Speaker 1: that's what we have to say about those things are
• 50:51
  Speaker 1: ready to transition to our recommendations, I think, so all right,
• 50:54
  Speaker 1: let's do it. Recommendations I'm recommending. So. I just got
• 51:07
  Speaker 1: back from a conference. It was in a city I
• 51:09
  Speaker 1: have never been to. It was lovely Savannah, Georgia, And
• 51:13
  Speaker 1: man is it beautiful there. Holy cow. Pretty much everyone
• 51:16
  Speaker 1: I interacted with was just unbelievably nice. The city itself
• 51:20
  Speaker 1: is gorgeous. It is it is old. It is like,
• 51:23
  Speaker 1: got all these really cool buildings. There's a bunch of
• 51:25
  Speaker 1: modern stuff. There's amazing parks, like it feels like a
• 51:29
  Speaker 1: huge metropolis condensed down into a small city. That's like
• 51:33
  Speaker 1: the proper city of Savannah's got like one hundred and
• 51:35
  Speaker 1: twenty thousand people. The Savannah area is like four hundred thousand. Like,
• 51:39
  Speaker 1: this is not a super large place, but it's got
• 51:41
  Speaker 1: everything that you would want from a city and it
• 51:43
  Speaker 1: is gorgeous. So I'm recommending to visit Savannah when you
• 51:46
  Speaker 1: get a chance. And I even I'm putting a website
• 51:48
  Speaker 1: visit Savannah dot com in the notes here. I mean,
• 51:52
  Speaker 1: I just told you what it is. It's not that
• 51:54
  Speaker 1: you remember, but you can click on that link and
• 51:55
  Speaker 1: go check it out.
• 51:56
  Speaker 2: I love Savannah. The first time I ever got to
• 51:58
  Speaker 2: visit Savannah, I was on tour and we played a
• 52:01
  Speaker 2: pizza place called Sweet Melissa's and we had to carry
• 52:04
  Speaker 2: all of our gear downstairs and play in a brick
• 52:07
  Speaker 2: basement and we got paid in pizza. So uh, that
• 52:11
  Speaker 2: was my first memory of Savannah and it was lovely.
• 52:14
  Speaker 1: So that's awesome.
• 52:15
  Speaker 2: Yeah, it was great. It was it was I mean,
• 52:17
  Speaker 2: we needed gas money, but like the pizza was helpful. Yeah, yeah,
• 52:20
  Speaker 2: go visit Savannah. So I also just got back from
• 52:23
  Speaker 2: a conference and actually this this one pains me a
• 52:25
  Speaker 2: little bit, only because you were so close to me,
• 52:29
  Speaker 2: Like if you if I, if I had not gone
• 52:31
  Speaker 2: to the conference I was going I went to, I
• 52:33
  Speaker 2: could have gone to Savannah because it's only a three
• 52:35
  Speaker 2: hour drive from me, Like you were right down the road, man,
• 52:39
  Speaker 2: but lo and behold, I was in another country. Yes,
• 52:42
  Speaker 2: I went to on Taba And on Taba is the
• 52:45
  Speaker 2: Ontario Apply Behavior Analysis Association. If you ever get a
• 52:48
  Speaker 2: chance to go to this conference, they are truly the
• 52:51
  Speaker 2: loveliest people I have ever spent time with. There are
• 52:54
  Speaker 2: very few conferences that I'm like, just go to this
• 52:56
  Speaker 2: conference and spend time with these people, because like sometimes
• 52:59
  Speaker 2: I'm just like, yeah, it's Comsida, I like I enjoy it.
• 53:01
  Speaker 2: But I would say on Taba, Faba and Asyaba, so Arizona,
• 53:06
  Speaker 2: Florida and Ontaba are all three really truly wonderful conferences,
• 53:10
  Speaker 2: and on Taba always makes me feel like home away
• 53:13
  Speaker 2: from home. Like the community there is very rich. They
• 53:16
  Speaker 2: are leading an advocacy. They've done some really killer work
• 53:20
  Speaker 2: to make sure that the profession stays a profession in
• 53:22
  Speaker 2: the in the province. The people that are working on
• 53:25
  Speaker 2: the board are very forward thinking, progressive, incredible people. Some
• 53:29
  Speaker 2: of my favorite folks and just some of the behavior
• 53:31
  Speaker 2: analysts there, Like I've had the lovely opportunity of meeting
• 53:34
  Speaker 2: some really truly amazing behavior analysts and wonderful people. So like,
• 53:37
  Speaker 2: just a huge shout out to to Jamie, jess Ali,
• 53:41
  Speaker 2: Naomi Sarah. I got to meet Ben from Behavior Speaks
• 53:45
  Speaker 2: at this conference too, and he's a really lovely dude.
• 53:48
  Speaker 2: So and if I forget anybody's names, by all means
• 53:51
  Speaker 2: you can yell at me and scream at me. Albert
• 53:53
  Speaker 2: like just really cool people. So but either way, lovely people,
• 53:56
  Speaker 2: super scientist, practitioner forward, just really really great conference. So
• 54:00
  Speaker 2: you should go. And if you can't go, you should
• 54:03
  Speaker 2: go onto their website and you should purchase some of
• 54:06
  Speaker 2: the talks to watch what they do, because they do cool,
• 54:10
  Speaker 2: so go support them.
• 54:12
  Speaker 1: Fantastic. All right, very good, Well we will wrap this
• 54:15
  Speaker 1: one up here. I think I did not say this earlier,
• 54:19
  Speaker 1: but you can tell us your thoughts on the autism
• 54:23
  Speaker 1: subtypes and anything we discussed in this episode. We also
• 54:27
  Speaker 1: accept heaping amounts of praise. Of course, you can email
• 54:30
  Speaker 1: us directly at info at wwdwwdpodcast dot com or reach
• 54:36
  Speaker 1: us on the social media platforms. But I think that's
• 54:38
  Speaker 1: what we have to say about this for now, So
• 54:40
  Speaker 1: thank you all for listening. Anything else you'd like, d
• 54:43
  Speaker 1: ed not today, all right, then this is Abraham.
• 54:45
  Speaker 2: And this is Shane. We're out sea. You've been listening
• 54:49
  Speaker 2: to Why We Do What We Do. You can learn
• 54:51
  Speaker 2: more about this and other episodes by going to wwdwwdpodcast
• 54:57
  Speaker 2: dot com. Thanks for listening, and we hope you haven't
• 54:59
  Speaker 2: allo okay,