Everything you’ve always wanted to know about autism — Chasing Life

[0:01] Welcome to Chasing Life. [0:03] Last year I got a voicemail that really made me pause. [0:06] It was from a caller named Victoria, she lives in San Antonio, Texas, and she had a pretty [0:11] simple request. [0:12] We'd love if you can kind of just give us some facts about autism. [0:17] We've seen the numbers go up in, I have an autistic son, thank you for being a source [0:23] that we can trust. [0:25] Facts. [0:26] That's what Victoria is asking for. [0:29] For herself, yes, but I think also for anyone trying to make sense of all the headlines [0:33] and debates and misinformation that we're seeing these days about autism. [0:38] So that's exactly what we're going to do today. [0:40] I'm going to be talking with Dr. Matthew Lerner, who is a leading autism researcher at Drexel [0:44] University, and we're going to be getting into the facts. [0:48] What is autism? [0:50] How has our understanding of it changed? [0:53] And why does it seem to be rising in terms of overall numbers? [0:57] I'm Dr. Sanjay Gupta, CNN's chief medical correspondent, and this is Chasing Life. [1:08] For a lot of people, doctor, who they're tuning into this podcast because they want to learn [1:13] more. [1:14] Yeah. [1:15] They sort of generally know what autism is, but want to hear what it is specifically [1:19] from someone like you. [1:20] And also, I think maybe at the same point, what it's not. [1:25] So is there a way to sort of, you know, simply define it? [1:27] Excellent. [1:29] And I think really important question for precision, Sanjay. [1:31] If we're talking in DSM terms, right? [1:33] The DSM is the Diagnostic and Statistical Manual put out by the American Psychiatric Association. [1:37] It's the thing that a clinician will use in America to diagnose somebody with autism. [1:44] It's autism spectrum disorder. [1:46] That would be the term. [1:48] And autism spectrum disorder in the current DSM has sort of two groups of criteria. [1:54] One is in the social and communication domain, right? [1:57] Difficulties with fluid back and forth social interaction, reading and using nonverbal cues, [2:03] making and maintaining friendships and relationships. [2:06] Another domain that has to do with restricted repetitive behaviors and sensory experiences. [2:12] So maybe needing to say the same thing over and over again, or needing to line up toys [2:19] in a very particular way and getting really frustrated if they don't go in exactly that way, or hand [2:24] flapping, or kind of pacing back and forth, as well as having maybe a lot of reactivity [2:31] to certain kinds of sensory experiences like loud noises, itchy shirts, things like that. [2:38] When you bundle those features together and you have some in the social communication domain, [2:44] some in the restrictive repetitive behavior domain, that's what we call autism in a clinical sense. [2:51] Is this something that is present since birth or maybe even earlier than that in utero? [2:56] Autism science has really made great strides over the last 20 years. [3:00] There has been excellent, very well-funded, you know, consistent research trying to say, [3:07] where does autism come from and when does autism start? [3:10] We can now say with confidence that, you know, autism represents a unique developmental trajectory of the brain. [3:18] Literally, it's considered a neurodevelopmental condition. [3:21] The best evidence suggests that that different developmental trajectory begins in utero. [3:27] Probably in the second trimester would be, you know, the best guess at the moment. [3:34] That diagnosis historically takes place, you know, 18 months, two years, three years. [3:40] But actually, some, you know, cutting-edge early detection autism researchers are continuing to push that number lower. [3:50] There are, you know, folks and certain researchers who can pretty reliably identify many cases of autism by 12 months. [3:59] There's even some research that has successfully been able to predict autism with features by six months. [4:06] And even some efforts going younger than that. [4:09] This is going to be an important point for later in this discussion because, obviously, people have a lot of concerns about vaccines. [4:15] And again, I don't want to say this in a pejorative way or minimizing it because, you know, look, if you're a parent with a child who has autism, an autistic child, [4:24] I can understand the desire to sort of try and uncover or look into anything that may have caused this or anything that's going on there. [4:33] So, but the idea that there may be genes associated with autism, I think there are genes associated with autism. [4:39] The idea that it starts at that young age before vaccines are even given, that seems pretty foundational to me when I hear that. [4:47] That's exactly right. And that's when I started in the field, you know, maybe there were a couple of conditions, very specific genetic conditions that were associated with autism. [4:58] Now we can say that autism is largely a genetic condition. Autism is roughly 80% heritable, 80% heritable. [5:10] A good, a good analogy for that is, you know, what else is 80% heritable? Height. Height. I'm six foot four. There's a very good chance, right? [5:19] If people see me, they can, you know, say, all right, those kids are probably going to be pretty tall. [5:24] You can say that with as much confidence as we can talk about the heritability of autism. [5:30] And there's about now, I think a last estimate is about 102 specific genes that have started to be associated pretty reliably with autism. [5:42] The other point you raised earlier is this is the idea of a spectrum on the spectrum is language that is often used. [5:50] First of all, appropriate language. And second of all, what does it mean? [5:54] One of the other big developments in autism research over the last several decades is the understanding that autism can present in a wide variety of ways. [6:07] 40 years ago, autism was seen as extremely rare and there was only a really kind of small subset of ways of being autistic that were identified. [6:19] At that time, people didn't really talk about autism as a spectrum. [6:23] But as we learned more about all of the ways in which those features I talked about before can manifest, can get in the way, can work together, how folks develop over time, right? [6:34] How young kids who maybe present in one way actually change over time and look very different than we used to think. [6:40] We've come to understand that autism is indeed a spectrum condition, meaning there's a range of ways to be autistic. [6:50] Right. You can have some of the features, but not others. [6:56] So it would be very reductionist or overly simplifying to say that it's more severe versus less severe. [7:03] That's not what the spectrum is really reflecting. [7:06] It sounds like it may be different character traits for one person versus another. [7:11] That's one of the more common misunderstandings is this idea that the spectrum just means, well, somebody is sort of more autistic or less autistic. [7:18] Right. [7:19] And also, by the way, that more autistic or less autistic means that a person has a harder or easier time. [7:25] You know, those who present as having maybe more language challenges, they're often underestimated in terms of certain things that they know or can do because, you know, language is conflated with abilities, other abilities. [7:41] On the other hand, autistic people who maybe do have strong language ability or have been able to really like, you know, muster through and, you know, end up getting a job or something. [7:51] They're often expected to be able to then do all of these other things that other folks who have strong language ability can do. [7:58] And then folks are surprised or get upset with them or think that it's intentional when they suddenly are having a tough time. [8:05] And that's because their autism is still there. [8:09] It's still, you know, something that they are, you know, that's part of who they are. [8:13] It's just manifesting differently at different times and importantly, can change over time or with demands of the environment. [8:22] Has the rate of diagnosis or the number of people who are diagnosed at any given time, has that gone up? [8:27] And if so, why? [8:28] A couple of things are true. [8:31] Number one, it is true that the rate of diagnosed autism has increased. [8:37] 40 years ago, it was just a couple in 10,000. [8:42] Now it's about one in 31. [8:46] And that increase in a number is something that gets a lot of attention. [8:51] And there are certainly folks who, you know, have concerns about what that is and why. [8:57] But actually, we do have a good idea of most of why that's happening. [9:05] And so there are, if I may, four different things that could be happening. [9:13] And what we've learned is that the first three are most of what's true. [9:17] Number one is changing diagnostic criteria, right? [9:23] As I said, in the early 80s, in that version of the DSM, there were only a couple of ways to be autistic and they all involved having really pretty significant language challenges, for example. [9:37] That's not true anymore, right? [9:39] We've expanded. [9:40] We understand that the subtleties of the ways that autism can manifest can allow somebody to be very verbal. [9:45] Some autistic folks are actually hyperverbal, but they're still autistic, right? [9:50] So that has expanded things. [9:53] The second piece is broader awareness and understanding, which has allowed people to then see autism in the community. [10:03] And even outside of the clinical domain, autism is much more known and present in the community. [10:09] Stigma around autism have changed in such a way that, you know, people are more willing to even use the term. [10:15] And so every time that happens, we can think of as one more opportunity for a family member or a friend or a person themself to go, huh, maybe that's me or maybe that's my child or maybe that's my friend. [10:29] And that increases the rate over time. [10:32] The third thing is something called diagnostic substitution, which is things that kind of look like autism or somebody sort of on the borderline between, you know, ADHD and autism and they're not sure, right? [10:45] For a long time, in part because of the stigma, in part because there weren't even good models for what it would mean for somebody to be able to be successful or get good intervention and support. [10:55] A clinician might say, I'm not really sure, probably it's ADHD and anxiety or, you know, on the other end, maybe it's intellectual disability. [11:04] Well, now we do have more models in the community. [11:07] We do have more examples. [11:08] We do have more interventions and we do have more precision. [11:11] And that allows that substitution to go towards autism. [11:15] Those three things are most like probably over 80 or 90 percent of why autism, that rate has increased. [11:25] That said, the last, the fourth, would be a true rise in the rate in the population, even after correcting for population growth. [11:36] It does appear to be evidence that there's still a small amount of that, but not most of what is happening, right? [11:45] That is a drop in the bucket of the rise in autism. [11:49] So, contextually, I realize that this fourth category that you're talking about accounts for a very small increase in the overall numbers. [11:59] But that is at the same time where a lot of people have focused their attention. [12:02] So, let's spend a little bit of time in that bucket. [12:05] Paternal age, vaccines, environmental exposures. [12:09] Is that what we're talking about in this fourth bucket? [12:12] Here's what I can tell you. [12:13] The first thing that you mentioned, paternal age, and to a different extent, maternal age, right? [12:20] So, having older parents, does appear to be associated with, relatively strongly, with higher rates of autism. [12:27] Yeah. [12:28] And there's really interesting reasons for why that may be. [12:33] Other factors, such as some environmental exposures, certain pollutants, for instance, something called valproate or other chemicals in utero. [12:47] So, like the mom taking that medication, also appear to increase likelihood that a child will be born with autism. [12:57] There is this phenomenon in science, we sometimes refer to it as the paradox of ubiquity. [13:03] And it's this idea that if everyone's exposed to something, then you can associate it with just about anything, right? [13:10] And I think this gets us a little bit into the, you know, into the vaccine conversation. [13:15] And, look, I think that there's plenty of data now, both scientific data and epidemiological data, to be pretty definitive in this idea that there is not a link between vaccines and autism. [13:27] This is a myth that has persisted. [13:29] But it is worth saying, look, the paradox of ubiquity, children get vaccinated. [13:33] And as a result, because so many children get vaccinated, again, you can associate with just about anything, including autism, even if it's not true. [13:42] Even if it's not true, that becomes the sense that they have in their head because of the fact that they're dealing with something that is so widely used, vaccines. [13:50] This must be one of the questions you're getting more and more lately, especially over the last couple of years, as you have a secretary of health who basically believes that vaccines cause autism. [13:59] How do you answer that question again in a respectful way to parents who are legitimately concerned about this? [14:06] The idea of the association with autism came from actually just this diagnostic timing question, right? [14:18] For a long time, about 18 months, was when we could first start to notice some of the signs of autism using our best diagnostic technologies. [14:29] And about 18 months is when folks are getting a lot of their vaccines. [14:34] Right. [14:35] And so this is this classic kind of correlation causation error that we see in the world, right? [14:42] They say, well, what happened to my child around now? [14:44] I don't know. [14:45] They took him to the doctor and they cried a lot for a few days. [14:47] Maybe they even got a little welt on their arm. [14:49] Well, what could that be? [14:50] But importantly, as I just told you, we now have pretty reliable diagnostic tools that go much younger than that. [14:58] Yeah. [14:59] So that alone often helps to sort of dispel that myth, right? [15:06] Like I can tell you and certainly my colleagues who focus on early childhood can very often tell you well before your child gets their vaccine about their diagnostic status. [15:19] I think that's, again, a foundational point. [15:22] And I hope people just pay attention that the idea that what we're talking about, which you're describing, Dr. Lerner, is something that happens before the child has ever received vaccines. [15:31] And let's let's let's continue with a couple of things that have been in the news. [15:34] The the that was kind of a wild press conference, I got to tell you, involving the president, involving the health secretary about Tylenol and autism. [15:43] And again, you get a lot of questions about this, which is why we come to you and the Tylenol consumption, even among women who are pregnant and had fevers during pregnancy. [15:55] Tylenol use went down after that that press conference. [15:58] We know untreated fever during pregnancy can be problematic for sure. [16:02] And Tylenol is one of those medications that has for a long time believed to be safely used during pregnancy. [16:09] Where did this come from, Tylenol and autism? [16:12] Is there any merit to it? [16:13] And what's the message to women? [16:14] Something that we know is true is that I don't think anyone's taken Tylenol, especially pregnant moms, for fun. [16:21] They're taking Tylenol for a reason. [16:25] And the reason is usually that they have a fever or they're sick. [16:30] One thing that's hard to disentangle is if those some women who are taking Tylenol go on to have an autistic child. [16:38] Is that happening because they are having taken Tylenol or is it happening because they're having some fever or some other illness that might affect the neural development of their child? [16:53] That's really hard to take apart because that's this ubiquity problem again. [16:58] Many folks are taking, you know, it's pretty hard to find a woman who has the exact same fever and the exact same, you know, I don't know, whatever environmental virus that happened. [17:09] Here's one who did take Tylenol and here's one who didn't. [17:11] What's the difference? [17:12] What's the difference? [17:13] But some people, uh, like my, you know, like my colleague here at Drexel have actually done some of that work. [17:18] And, um, what they're finding pretty reliably is that it appears to be the fever, right? [17:26] It appears to be the, uh, neuro development is fragile. [17:29] Uh, the, um, maternal, uh, uh, uterine environment is, is fragile. [17:36] Uh, and, um, if a mom gets really sick for a while, there's a lot of things that can happen to, uh, her child developmentally, including autism. [17:46] To answer your question, right? [17:48] What's the message to moms? [17:49] The message to moms is that, um, if you're sick, uh, you should treat your fever. [17:57] In fact, one irony Sanjay is that, you know, there's, there's a real risk if pregnant, large numbers of pregnant women are now not treating their fevers for their child children to have a number of, uh, of neurodevelopmental outcomes, including autism. [18:17] Yeah. [18:19] There, there, there's a, there's a, uh, a sort of tragic irony in there that the women being sort of warded off something or told not to take something that could actually be helpful towards prevention. [18:29] The very thing that they're, they're worried about two terms people should look up as they're listening to this podcast. [18:34] Again, this paradox of ubiquity, which Dr. Lerner and I have mentioned, and also something known as base rate fallacy. [18:41] Just look these terms up and when you're thinking about these discussions, maybe it'll help sort of guide your thinking on statistics and, and why some things appear to be obviously problematic when maybe they're actually the, the very opposite of problematic as with Tylenol. [18:57] After the break, much more on autism with Dr. Lerner. Stay with us. [19:05] Well, part of the reason we really wanted to have you on the podcast is because we want to deal in, in facts and we want to, there's a nuance to everything in life. [19:19] And I, and I don't want to oversimplify or minimize by saying facts, but there are facts that should be shared around this. [19:26] And let me start just even one step further back by language. [19:31] And I saw this, this thing online about just how to talk about this, the, the appropriate way to talk about it. [19:37] And, and the couple of terms I just want to throw at you and maybe you can, you can give us some insights. [19:42] Don't use the term person with autism, I am told, but instead autistic person. [19:49] Is, is that your understanding as well? [19:52] So, you know, historically, uh, clinicians, teachers, others, uh, are taught, uh, to use what they call person first language, right? [20:02] Everyone should be considered a person first, right? [20:04] Your humanity is what matters. [20:06] Uh, increasingly over, uh, the, uh, last several, uh, years as, uh, sort of the autistic community has, you know, gained more prominence. [20:17] There's really been an appreciation of this idea of sort of identity first language. [20:22] That to call me a person with autism is to kind of pull the autism out of who I am. [20:27] But autism has been with me since birth and I wouldn't be who I am without my autism. [20:33] And so increasingly in the community, there's a, there's a preference for, uh, identity first language. [20:39] That said, there's a good research that's been coming out of the last few years about community preferences. [20:45] And there is some nuance. [20:47] There are some folks, including families who feel like they still prefer person first language. [20:54] So I think the moral of the story often is to, um, when you're having these conversations, think about who you're talking to. [21:01] Think about, uh, uh, you know, who you're talking about and making sure that we're speaking with some level of respect and understanding. [21:08] Yeah, I think, I think it's such an important point. [21:12] And as you're saying it's, it's nuanced. [21:14] I have always just personally focused on person first language as a, as a physician. [21:19] I mean, not to equate any of these things, but, um, I say a person with diabetes as opposed to a diabetic person, because I guess to your point, how much of your identity is coming from whatever, you know, you're specifically talking about here. [21:34] But I think the point you're making with autism is that people try and disentangle it and maybe in the process, minimize the impact that it's had on one's life. [21:43] So in that case, saying someone's an autistic person would not be bad. [21:47] It's in some ways paying respect to the idea that that's been a central part of their identity. [21:51] Yeah. [21:52] Some, some autistic people, uh, phrase it to me this way. [21:55] They say you want to respect who I am as a person. [21:58] Well, I wouldn't be that person without autism. [22:02] That's interesting. [22:03] So calling me a person with autism almost to, you know, to them, somebody once told me that seems redundant or, you know, one, uh, autistic, uh, advocate, uh, who, who kind of, uh, pokes fun at it and says, you know, uh, yes, I'm a person living with autism as a roommate and, uh, they don't pay rent. [22:22] They're just there. [22:23] No, but, but, you know, I think for anybody listening, uh, it feels like it's okay to have the conversation and maybe, maybe to ask. [22:31] And, and, and that can be a good, a good way to, to sort of get into it with somebody because the language does matter. [22:37] It can alienate if, if you're not sort of at least thoughtful about it. [22:41] Not, not everyone's going to get the language right, or at least not right for that particular conversation always. [22:46] But to be thoughtful about it, I think is the key. [22:49] Yeah. [22:50] Let me throw just a couple more at you. [22:51] Nonverbal versus non-speaking. [22:54] Nonverbal is, um, the more traditional language, which usually refers to folks who don't use verbal or spoken language. [23:06] Um, historically, the implication of nonverbal is that that individual's capacity to communicate might be very limited or even, even non, close to non-existent. [23:23] Non-speaking is, uh, a term that has also gained more prominence in the last decade or so as we appreciate and understand the value of augmentative communication devices. [23:34] Mm-hmm. [23:35] The fact that now we have technologies and tools that allow folks to communicate perhaps without speech. [23:41] You know, sometimes it's, um, typing, uh, or, you know, using an iPad, um, and, or, or signing, uh, actually. [23:50] Um, in fact, there's, there's whole, a whole subset of sign language that was developed, simplified sign that was developed for, for certain, uh, non-speaking autistic people that might be sort of, you know, easier to manipulate in their hands. [24:02] Um, the point being non-speaking generally is meant to refer to somebody who may still communicate and often in many cases may communicate very eloquently, but not in the way that you and I are right now. [24:16] Again, we want to get the language right. [24:18] Just talk to me about the word cure. [24:20] Um, what, when you hear the idea that people want to cure autism, what goes through your mind as a, as an expert in this area? [24:28] Here's what I can say about cure. [24:32] What is the thing that you're trying to cure? [24:35] If we take seriously what science tells us, which is that autism is a part of who somebody is, it's with them from birth, it's part of the way their brain has developed. [24:48] Um, there's a real risk of conflating this idea of curing or taking away their autism with taking away their, who they are. [24:58] On the other hand, it is absolutely the case that there are many people, in fact, the vast majority of people who are autistic, who struggle, um, and can struggle in ways that can be anywhere from, um, very difficult on a daily basis to really significantly, uh, impairing. [25:20] Um, you know, in terms of their own health and wellbeing and safety. [25:23] When you actually talk to people, even autistic people who struggle a lot or their family members, when you really press them and say, well, what is it when you're talking about this word cure that you're looking for? [25:33] They usually are talking about something really specific, right? [25:36] I want, you know, myself or my family member to be able to not find myself so frustrated that I, I could run into, they could run into traffic because I can't control my own body. [25:48] Or, you know, engage in, in self-injury to the point that I have to go to the hospital. [25:53] That happens to some people. [25:54] And that is something that most people would want to take away or even cure. [26:01] But importantly, that's not equivalent to all of their autism, right? [26:06] There are other aspects of their autism that they might not want to, to take away or are causing them harm or even are, you know, giving them great benefit. [26:15] This is enlightening, Dr. Lerner. [26:17] Dr. Lerner, I, I, and, and as we talked about, it's, it's timely. [26:20] This is an important discussion. [26:22] I hope we continue to have these discussions. [26:24] Thank you for saying that, Sanjay, too, because, you know, as we know, we're having this conversation in April. [26:28] April is Autism Acceptance Month. [26:30] It's very much, you know, on, on people's minds. [26:33] But as the autistic people and families that I work with every day say, you know, every day is Autism Acceptance Day in my life. [26:39] And, you know, so I'm hoping that, you know, we can keep having these conversations even, even beyond April. [26:45] All right, that was Dr. Matthew Lerner. [26:50] I got a lot out of that. [26:51] I hope you did as well. [26:53] Dr. Lerner is the director of the Social Connections and Treatment Lab at the AJ Drexel Autism Institute. [26:59] This episode might be over, but we're going to continue the conversation because autism is not a single story. [27:06] Every person's experience is unique. [27:09] That includes Professor Josh Amber, who studies what adulthood can look like for autistic young people. [27:15] And he also speaks from a lived experience. [27:18] So next week on Paging Dr. Gupta, we'll continue the conversation with Professor Amber and also our listener Victoria, [27:25] who had questions about supporting her son as he grows up. [27:29] That's on Tuesday, and I hope you'll be listening.