You're Wrong About - The Anti-Vaccine Movement

Episode Date: February 1, 2021

Special guest Eric Michael Garcia tells Mike and Sarah about the deep roots of a pernicious modern myth. Digressions include Mary Tyler Moore, British place names and supermodel dating habits. Mike fi...nally gets to talk about Swedish statistical methods. Here's some of Eric's work on autism and here's his book!Support us:Subscribe on PatreonDonate on PaypalBuy cute merchWhere else to find us: Sarah's other show, Why Are Dads Mike's other show, Maintenance PhaseSupport the show

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Starting point is 00:00:00 You know, people complain about what the internet has done to culture, but I do think the fact that people don't just sit around quoting Anchorman all day long is an improvement, because that's what life was like in 2004. Welcome to You're Wrong About, where every so often we prove that we know a third person. I am Michael Hobbs. I'm a reporter for The Huffington Post. I'm Sarah Marshall. I'm working on a book about the satanic panic. And if you want to support the show, we're on Patreon at patreon.com slash you're wrong about, and many other places in the description. And we have a special guest today.
Starting point is 00:00:46 Hi, how are you? Hi, Eric Michael Garcia is one of our favorite journalists. He writes for everyone. He's one of those people that just in his bio is like, Eric has written for, and then they list like 51 publications that you've been reading. And you're like, National Geographic's in there? What? And importantly, for this episode, he also has a book coming out entitled, We're Not Broken, Changing the Autism Conversation. And he is here to talk about vaccines and autism. Thank you very much for having me. I'm a big fan of the show.
Starting point is 00:01:16 Michael and I DMs about politics. Sarah and I DM about pop culture. And I'm a big fan. I'm a Patreon supporter. Oh, yeah. Yeah, I'm that serious. Getting them bonus episodes. Yeah. Well, and I think of you as someone who I get to see in the like high school proxy that is Twitter. It's like prom. It's just constant prom in there. I don't think it's prom. I think it's just like a regular day and you're just like, I'm tired and I got to do fucking lacrosse. And none of my actions seem to have consequences.
Starting point is 00:01:46 But we're here and we're making jokes about it. I say a lot of times that like when I'm on Twitter, like there's always really, really serious stuff going on in the news. Michael's yelling about it. I'm yelling about it. And I'm like, Sarah is usually just like, Oh, I'm watching all episodes of NCIS or Prairie Basin. And like this really makes me happy. Eric, I'm so happy to have you on here because I feel as if like all of this moral panic stuff, all of this epidemiology of misinformation stuff is like, I hate to say it, but maybe more relevant right now than it has been in a while in this very horribly obvious way. And this,
Starting point is 00:02:27 what we're talking about with you today, I think is a really important kind of a keystone within this whole zeitgeist that we're unfortunately trying to punch our way out of, I guess. Yeah, that's that. I mean, I appreciate you saying that what I have to say is relevant. Autism and misinformation is kind of the canary in the coal mine for a lot of the disinformation that we're seeing now. There are many ways that what happened with our understanding of autism illustrates how misinformation, the age of misinformation is really happening these days in a lot of other ways. This sounds great. Set us off, Eric. Should we start with sort of what is autism and just
Starting point is 00:03:06 sort of laying the table for what we're actually talking about? Yeah. So let's start with a really, really rudimentary discussion about autism. Autism is a disability that affects everybody from myself to people who can't speak to people who are kind of in the middle. One to two percent roughly is estimated to be autistic. And one, as of right now, we know at least between one and 68 and one and 50 children are autistic. But the problem is that because the story of autism has gone through so many filters, a lot of what we know about autism has been misunderstood, wrong or distorted throughout history in the public life.
Starting point is 00:03:46 That would be unprecedented in the story of medicine and psychology. Where do you place the beginning of the story? Because I think where a story begins is something that can be specific to the teller. If you really want to be generous, you go back to 1908 and 1911, when Eugene Boyler, who was, I believe, a Swiss psychiatrist, he saw autism. He labeled it as a trait of schizophrenia. As a result, for a long time, you'll see kind of autism and childhood schizophrenia being kind of used interchangeably. You can't understand how we understand autism today without going to Baltimore, Maryland in the 1930s and 1940s and Nazi-occupied Vienna.
Starting point is 00:04:32 Okay. See Silverman's book. I'm going to be referencing his book a lot in this podcast. It's called Neuro Tribes. Leo Connor was serving children, I believe it was 11 children in Baltimore, Maryland, and he saw autism as something that was very rare, that existed very narrowly. Conversely, Hans Asperger, he thought that autism was something that existed on a continuum. But the problem was, A, we don't know the extent to which Hans Asperger was affiliated with the Nazis. We do know that he referred some of the children who he treated to clinics where children died. Hans Asperger, what happened is his clinic was bombed during the war. A lot of his stuff
Starting point is 00:05:20 was lost for years. As a result, because Connor was speaking, it was the English speaking world, his paradigm about autism became the default and became the conventional wisdom. So knowledge about the autism spectrum is one of the hidden casualties of World War II. Oh, that's good. That's good. This is why we don't have words, people. Yeah, yeah, exactly. So this is where it gets really, really complicated. Leo Connor in his book, in his initial study, did write that while autistic children were born with an innate ability to form typical contact, he also wrote that there are very few really warm hearted mothers and
Starting point is 00:05:59 fathers of autistic children. He later told Time Magazine that the children he studied were, quote, kept neatly in a fridge, which didn't defrost. Those did kind of plant the seeds for what was later to be known as refrigerator parents, which was really popularized by Bruno Bettelheim. And he basically, in his book, The Empty Fortress, said that basically the parents of autistic children wish the children didn't exist. Yeah. Bruno Bettelheim called it Mother's Black Milk. Oh my God, Bruno, like if you use less inflammatory language, you know. I know. It's not like you're selling like a novelty ice cream in Japan. Right, yeah. So you're saying that these treatments were more effective at thawing children out who had been frozen by their Mother's Black
Starting point is 00:06:44 Milk. Okay. It's funny because I know Bruno Bettelheim as the author of The Uses of Enchantment, which is a book on fairy tales. And I'm like, oh yeah, there he is. Yeah. Like maybe you should do your different fields on different days. This strikes me as unnecessarily cruel to the mothers. Like even if you think that this is brought on by the mother's attitude or behavior, like maybe calling them that isn't going to encourage them to do a better job. Maybe what you're just asking them to do essentially with that level of shaming is to just stash their children away. That was what led to a lot of autistic kids becoming institutionalized because then they're being taken away from their unloving parents. In fact, in the 1960s, I believe, so Richard Rory Grinker
Starting point is 00:07:30 cites this in his book, Unstraged Minds. There is a movie called Change of Habit where Elvis plays a doctor with Mary Tyler Moore, who's a nun. One aunt takes a child to the clinic and assumes the child is deaf. But then Mary Tyler Moore says to Elvis, I think she's autistic. Elvis says, it's not going to work, Michelle. She's hiding behind a wall of anger. It's not going to work. I'll take over her. We'll try rage reduction. And then he tries to rid her of her autistic frustration. Oh, Elvis. Remember this was at the time when there really was a very narrow definition of autism? These four kids were sent away to institutions. What's interesting is that in the 1970s, there were all of these kinds of consumer safety pushes, unsafe at any speed.
Starting point is 00:08:16 But autism as a result, because if it's seen as bad parents are causing it, then it's not a public policy concern. You know what I mean? That's fascinating. That's a really, yeah, that's such an interesting attitude of the time. And then I feel like, I mean, this is a theme that we come upon a lot, which is that people didn't use to talk about this. And the fact that there isn't a cultural imprint, aside from weird Elvis one-liners occasionally, doesn't mean it wasn't there. The 50s weren't idyllic. And people didn't not have sex when they were married. You just created media that reflected that. And we're just so easily fooled by that. This stuff was happening. It was just that they were being sent away. Autistic people existed. We just didn't want to
Starting point is 00:08:58 talk about it. This is so much like the history of the discovery of childhood sexual abuse and people in the 70s being like, where did it come from? It's this new societal threat. And it's like, no, it just was always there because we silenced people. We didn't talk about it. We minimized it. We acted like it was something that only affected a tiny percentage of the population, which of course is wildly untrue. Very similar aspects in some ways. Much in the same way if we're going to keep on talking about Elvis, just in the same way that Elvis upset parents because he brought sex out into the open. They were probably equally as upset about him talking about autism in his movies. Yeah, they started to have suspicious minds.
Starting point is 00:09:38 That's nice, Mike. Yeah. So for a long time, parents blamed themselves. And then what happens is the pair of times slowly starts to change, largely with the help of a guy by the name of Bernard Riemlund, who is a father of an autistic child. And his book Infantile Autism really kind of leads to kind of a pushback to that idea and helps relegate it. The problem is Riemlund was one of the biggest promoters of the idea that vaccines might cause autism. And it's important to recognize that this was going on before Andrew Wakefield. When does this book come out? This comes out in the 1960s. Okay. But then what also happens is that after Riemlund's book comes out, a lot of parents start to coalesce and start to meet up. And he's one of the co-founding members
Starting point is 00:10:19 of the autism, what later becomes the Autism Society of America, along with Ruth Christ Sullivan, who's incidentally the mother of one of the people who Rain Man was based off of. Riemlund, while he was correct in debunking that really, really toxic idea of toxic parenting, he also was one of the people who brought ideas like case in free diets, giving children high levels of B12 will helpfully make them not as autistic anymore. So you have this kind of weird doom loop where Leo Connors, the first person to talk about autism, but he also plants the seeds for Bruno Breilheim's nonsense. Bernard Riemlund debunks that, but then he also is one of the biggest promoters of these kind of quackery cures and treatments for autism. So it's like,
Starting point is 00:11:02 it's not this crank explanation, it's this other crank explanation. Yeah. I think it's also important to remember that autism doesn't exist as a separate diagnosis in the diagnostic and statistic medical manual of mental disorders until 1980. Oh, really? Yeah. So gay people were in there, but autistic people weren't. Great stuff. Autism first appears on the DSM, DSM1 in 1952 under schizophrenic reaction and childhood type. It doesn't appear as separate from schizophrenia until 1980. Around that same time, Lorna Wing in the UK rediscovered Hans Asperger's work. She also had an autistic daughter. So she knew the parenting thing was rubbish, as she would say. And she said in her 1981 article, Asperger syndrome, a clinical account that autism belonged in,
Starting point is 00:11:54 quote, a wider group of conditions we have in which common impairment of development of social interaction, communication and imagination. So really what happens is in the 1980s is when we get our understanding of it. Even then it is until 1994 that Asperger's syndrome is put into the DSM and then it isn't until 2013 that all of it comes under the same umbrella of what we now know as autism spectrum disorders. All the while that we are having these kind of changes that are happening in the DSM, we're also changing our understanding of disability and there's public policy that's being changed. So in 1990, the Americans with Disabilities Act is passed. That is a historic piece of legislation, but I would argue there's also an equally important
Starting point is 00:12:39 piece of legislation, which is Congress reauthorized what was then the Education for All Handicapped Children Act under a new title, Individuals with Disabilities Education Act. Specifically, IDA included autism and was, quote, meant to establish autism definitively as a developmental disability and not as a form of mental illness. And IDA mandates that students with disabilities receive what's called a free appropriate public education. And that now finally applies to students with autism. But what it also means is that schools that receive federal dollars have to report the number of autistic students they serve. So what that does is that leads to a spike in kids getting diagnosed because they're getting diagnosed at school.
Starting point is 00:13:24 This was a net positive to see this many autistic people because we missed it. We missed it for a long time. Well, this is like the Me Too movement, right, where there's this idea that like the world changed in 2017 or whatever. And it's like, no, it's just like all this had always been happening. There just, you know, was the sort of bloodletting of all these stories that had always been there, it seems like, you know, just reacting to social recognition of an experience as if the people with that experience are being created the moment you become aware of it seems like a consistent problem we have news consumers. There's also a consistent thing that we see in moral panics is this idea of a growing problem. And then the minute you look into it, it's actually just a
Starting point is 00:14:12 statistical artifact. Famously, Sweden is the rape capital of Europe, because it has a much higher rate of reported rapes. And that's because they have a different statistical method for counting rapes. They count the number of sex acts. So if you're in a marriage and your husband is raping you repeatedly, they'll count that as like 400 instances of rape, whereas other countries will count it as one instance of rape because there's one perpetrator. But then there's all this like moral panic shit about like Sweden's letting in immigrants and they have all these rapes and it's like literally read a footnote, dude. At least this is stopping like angry reactionaries from going to Sweden. Like I'm kind of happy about that. Keep the alt right out of Sweden. It's
Starting point is 00:14:53 actually a fine outcome. Yeah. In the same way, I mean like here's a sentence from a book review in the New York Times that about when you start to see this moral panic, this is a book review from I believe 2005. It says, beginning in the 1980s, the number of autism cases started to take off. The latest estimates are one child and 166 has some sort of disorder with effects that range from mild to quote unquote crippling. There's a piece called the secrets of autism came around the same time. It talks about the cases of autism and closely related disorders like Asperger's are exploding in number and no one has a good explanation for it. While many experts believe this increases the byproduct of recent broadening of criteria, others are convinced
Starting point is 00:15:37 that the surge is at least in part real and thereby a cause for grave concern. Championship both sides there. Yeah. This is like classic time magazine writing of like, could it be this reasonable thing or perhaps this unreasonable thing? We don't know. Bye. Straight forward that like if there's literally a law that schools now have to report the number of autism cases that they're seeing, you're obviously going to get a massive spike in the reports of autism because there's now a law saying that it has to happen. Well, and also like as a school, if I'm running a school, right, if I'm like a crooked whoever's in charge of this thing, could I possibly get additional funds by kind of fattening up my
Starting point is 00:16:20 autistic kid numbers? Yeah, I should add that like IDEA as good as it is, the federal government has never lived up to its commitment. Right. It only funds like I think 14% of the IDEA. So it's not even that much, but even then, like can you imagine how much better things would be if the federal government lived up to its commitment? Well, also as with so many things, there's probably so many kids that are sort of in a borderline area like could be yes, could be no. These kinds of laws give the incentive to sort of err on the side of let's assign that kid some sort of autism status so that we get the extra funding. Right. And then to the outside world, it's going to look like this avalanche of new like, oh, the kids are autistic now. And it doesn't have to be sinister
Starting point is 00:17:04 either because like, you know, here, I'm sure you're like, let's, you know, it's better to get funding for the kid, hopefully then to deprive them of any additional help. Right. And I should add that like getting parents fighting for IEPs and things like that, it's really, really difficult. Yeah. And it is something that parents constantly have to fight with, fight with the schools. I know my mom did. I do feel like it fits in with the sort of right wing myth that you can say like, I'm black, and then you'll immediately get accepted to Harvard. This is their conception of how affirmative action works. And I think that they also have a conception that you can just stand up be like, I'm disabled. And it's like, okay, you don't have to pass any tests ever again. And here's a giant
Starting point is 00:17:43 envelope full of money. It's like Michael Scott going, I bankruptcy. Yeah, exactly. Even if you are getting some sort of recognition of a disability, it's not like just money is raining from the ceiling and things get easy at that point. Yes. So the other thing that happened is after the IDA and after these spike in diagnoses, there was a real chance that now that we knew what autism was, now that we were getting more people diagnosed, there was a real chance that we could actually help these people. Autism was for so long seen as a mental illness. So it wasn't part of the larger disability rights movement in the 1970s, like the sit ins, or you know, the crawl up the capitol, even though some people were autistic. So like they were largely excluded
Starting point is 00:18:28 from that disability rights movement. Because up until this point, disability was still really bipartisan. The IDA was signed by George H. W. Bush, and it was done by voice vote in the Senate. So that means that it was so popular that they didn't even need to keep track of who voted for it. And then the vaccine theory basically throws this all out the window. I feel like this is like the pivot in the Scorsese movie where it's like Jimmy was cutting ties with everyone between him and Lufthansa. You're like, oh no, things seem so great for one second. Yeah. My understanding is that there was this like rogue British doctor who did the study or read the study and was like, by Jove, vaccines cause autism. I put in an accent because this is also depressing.
Starting point is 00:19:15 Just thought we could have a little fun. And so spread this theory that I believe on further analysis or competent analysis had like very clearly no basis in fact, but it's the kind of thing where you get this like fossil of meaning. Yeah, people were ready to believe it. And then I believe Jenny McCarthy was of some importance in like bringing this theory to a wider audience. Or maybe that's just how I first heard of it. From Nazis to Jenny McCarthy, the story of autism. Yeah. So in the 1980s, there was talk about vaccines. There had been books like DPT is shot in the dark. There had been fear that vaccines might be dangerous. The doctor's name was a guy by the name of Andrew Wakefield. This is in 1998. So he holds a press
Starting point is 00:20:01 conference. Once again, this sounds very, very British. So forgive me. At the Royal Free Hospital in Hampstead in North London. Oh, you weren't kidding. It also came with a new company video that said researchers at the Royal Free School of Medicine may have rediscovered a new syndrome causing inflammatory bowel disease and autism. And Wakefield was in a lot of ways very, very welcome to this. He had studied Crohn's disease before. He was seen as a very, very credible person. He was also very, very media savvy. He looked really handsome. He kind of played this role of this kind of I'm this crusading doctor who is speaking for the children. And as you know, most of the times saying you're doing something for the children is like the perfect way to promote
Starting point is 00:20:47 your wacky idea. You get carte blanche if you claim to be acting for the children. It is a fantastic scam. And I should say that nowadays, Andrew Wakefield, he lives in the US, his current girlfriend is El McPherson, which is hilarious. Oh, God. El, you could do better. You dated Joey Tribbiani. Wakefield basically argued that there was this idea called leaky gut syndrome wherein vaccine particles prevented the breakdown of certain foods like wheat and dairy, which then passed through the walls of the gut, make their way to the brain and cause autism. Oh, so it's supposed to be dairy in the brain. Sure. Then you would have much higher rates in Wisconsin. Incidentally enough, I got diagnosed. I first got diagnosed with stuff in Wisconsin.
Starting point is 00:21:30 Oh, well, there you go. I think that holds up the entire theory. We got to get behind this Wakefield guy. But the other thing that's important to note, and Stu Sonoma points it out, is that a lot of autistic people like to eat a lot of the same stuff all the time. So it would make sense that eventually they might develop some gastrointestinal issues. So if you want to eat the same spicy meatball every night, then you can have a problem. Yes. So you've also got the sort of the quote, unquote, evidence that a lot of autistic kids are also experiencing like stomach aches and stuff. Yeah. So Wakefield's got a call from a mother of an autistic boy. Initially, he says he didn't know anything about autism. And then the mother explained that the kid had really bad bowel problems
Starting point is 00:22:16 like diarrhea and incontinence. And as she said that he had been behaving really normally until he received the vaccine. And then, like I said, his controversial work on Crohn's had already made him a figure among anti-vaccine activists. So he already had the ground was already fertile for him. Right. And also, I mean, is the central evidence that you have this massive explosion in the number of autism cases at the same time as you have this massive explosion in the number of children receiving vaccines? Basically, it's this great graph line with the two lines going up at the same rate. Measles, Mumps, Rubella vaccines specifically. Yes. So like peer reviewers in the early draft were really worried about the city's language. And the Lansing editor said, quote,
Starting point is 00:22:59 published evidence is inadequate to show whether there is a change in incidence or a link with the MMR vaccine. So is this article published with a disclaimer? Is that what that is? Okay. But at the promotional video at the press conference, he basically suggested that this was that his study was the latest evidence challenging the safety of the MMR vaccine. Wakefield really becomes this kind of crusading person on both sides of the Atlantic. Not only is it in the UK, but it's also in the U.S. And he's invited to testify before Congress. He testified before the House Oversight and Government Reform Committee. And the chairman of that is the guy by the name of Dan Burton. So Burton holds this hearing in 2000. And he talks about how his
Starting point is 00:23:42 granddaughter nearly died after she received the hepatitis B vaccine. And his grandson became autistic after he was vaccinated. And he said that there was some emerging evidence about a connection between vaccines and autism in some children. And that we can't close our eyes to this. And what's interesting is you go back and you watch the actual video. A lot of members of Congress are like, we're glad that we're moving on from the idea that autism is caused by by unloving mothers. Once again, it's like, we're doing something about autism. The whole time, when I watched the videos when researching this, I was like, you guys did something about autism 10 years ago with the IDEA. I was like, Khrushchev banging my shoe on the desk.
Starting point is 00:24:24 There were a couple years there where this was seen as worth asking the question. Didn't the Daily Show have an anti-vaxxer on? Yes. This was seen as, like you said, this might be worth looking into. I will say that in 2008, both Barack Obama and John McCain talked about it. So like Obama says, I'm just quoting, he was speaking at a rally in Pennsylvania. He says, we've seen a skyrocketing autism rate. Some people are suspicious that it's connected to vaccines. So the science is inconclusive, but we have to research. And then also to your point, Sarah, about Jenny McCarthy. So this is the really important thing. She has a son who's autistic and she says that she's done a lot of really crank things with her son, including like
Starting point is 00:25:06 putting him in a hyperbaric chamber, I think. She even co-authored a book with Andrew Wakefield in 2011 called Callous Disregard. Those must have been interesting conference calls. And she's talked about the vaccines getting her son Evan autism. She says, in her interview with Oprah, the first thing I did, Google, I put in autism. I started my research. Something came up, a change in my life that led me to the road to recovery, which said autism is reversible and treatable. The name of the episode was called Mother's Battle Autism. And I think that this is really important to say because not only is she promoting bullshit, the way both Oprah and Jenny McCarthy are framing the bullshit is also important because it's not only that vaccines
Starting point is 00:25:51 cause autism. It's that mothers have to fight autism, not fight to make the world better for autistic people, but battle autism. I actually have a really personal story about this. The first time I heard about vaccines and autism was on Larry King when he invited Jenny McCarthy. I remember asking my mom, I was like, did I become autistic because of the vaccines? And she was kind of puzzled because she was like, what are you talking about? Because I've been diagnosed before all this stuff happened. I think I got diagnosed in 1998 before Wakefield did his whole shtick. So it's funny that like my first public encounter with autism was through Jenny McCarthy promoting this garbage. Well, how did you feel, Eric? I mean, I feel like it's weird. It always just makes me
Starting point is 00:26:34 uncomfortable when parents talk about sort of the tragedy of their kids being who they are. Yeah. So at the time I should say when I was 16, when I saw that, when I watched that, initially I thought, oh, cool. Somebody actually cares about this thing that I have because I was bullied a lot. And I thought that, oh, maybe there's something worth looking into on this. And my feeling was, okay, if it's on CNN, then it has to be factual. This is something that we should at least look into and the veneer of credibility. It gave credibility to a lot of this stuff. And it needed to seem like this was an important thing to discuss. And I think that that was how it poisoned the well. And we're really still seeing the damage of it. I do think that
Starting point is 00:27:15 period is really interesting because there were a couple years there before all the Wakefield stuff got debunked. I just very much remember the sort of smug, we must ask this question. Like for the purposes of free speech, I feel like it's all wrapped up in like South Park somehow. I was just thinking about South Park as you were saying that, yeah. I was thinking about South Park too, because I used to go to South Park a lot when I was younger. This is our like murders on the room work moment. Yeah. We all thought of South Park. And it was very, I just feel like it was very sort of wrapped up in this idea that there's never any harm in asking a question. There's never any harm in saying something has to be looked into. There's never any harm in bringing up
Starting point is 00:27:54 something over and over and over again, that as long as you're just asking the question, you're not necessarily making the argument. But of course, what we know now is that like asking a question does actually see that idea with the public and can have real effects, even if you're not necessarily saying, I know that vaccines cause autism. We must continue to investigate this question. Yes. Even though there's overwhelming evidence, basically proving at this point that it isn't true, we mustn't, we must continue to fight, to battle autism. And it's like, I don't even think we should talk about battling cancer, honestly. Like, do you really want to sound, do you want to be saying that, Jenny McCarthy?
Starting point is 00:28:32 Yes. When there's really thin evidence for something and there's a potential for massive societal harm, maybe just fucking wait until more studies come out. Like all we had at this point was essentially one study and a really specious correlation. And it was like, just don't ask, it's not worth asking the question right now. But then you get into this like free speech, like I'm allowed to ask the question stuff and like you're allowed to, but you're a dick. So around this time of the talk about vaccines and autism and all of this, Bob Wright, who's the head of NBC Universal, his grandson, Christian, is diagnosed with autism. And as a result, him and Suzanne Wright, his wife at the time, start Autism Speaks.
Starting point is 00:29:13 Well, what is Autism Speaks goals while we're talking about who they are? Autism Speaks was initially started to find, to basically look to find a cure for autism and then remove the chair from its language in 2016. Until 2015, the charity's position was, it remains possible that in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlining medical or genetic condition. So basically, they at least gave a veneer of credibility to, well, this is one theory. This seems like a lot of rich parents. I honestly think it's a lot of rich people who think that they're doing the right thing. Where you don't actually have autistic people at the
Starting point is 00:29:52 table, which for a long time, they didn't have autistic people at the table, or at least in a leadership on it. You're often not listening to the actual needs of autistic people. I think that's why a lot of autistic people really don't like Autism Speaks. Almost every autistic person I know doesn't like them. I think the thing is that they see autism as a charity and something to be dealt with and not a specific identity and a group of people who deserve to be treated fairly and who deserve to be treated, accepted in society. They've changed a little bit. So they don't talk about cure anymore. They don't talk about removing anymore for such a long time because they framed it in a term of autism as a tragedy. That's made it really,
Starting point is 00:30:34 really hard for autistic people as a whole. So in fact, they didn't add, I'm going to send it to you right now since 2009. Okay, we can count down and do three, two, one, go and I'll watch it together. Three, two, one, go. I am autism. I'm visible in your children. But if I can help it, I am invisible to you until it's too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently. And with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric aids, cancer and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall
Starting point is 00:31:33 into my hands and I will bankrupt you for my own self gain. I don't sleep. So I make sure you don't either. I will make it virtually impossible for your family to easily attend the temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. It's not fatal. It's putting the parents' experiences first over the children. It's almost literally autism saying, hello, I want to play a game. I've seen episodes of criminal minds that are a lot less menacing than this. It's so fucking unethical to use real kids in this. It's just it's framing autism like Freddy Krueger. Yeah, this kind of frames how they view dealing with autism. Right. And this is how they frame seeing autism as something to be
Starting point is 00:32:22 battled or combated. And like even if they had some success in 2006, the piece of legislation that was signed was the Combating Autism Act. Nice. And it wasn't until 2014 that it was changed to the Autism Cares Act. So it very much talks about how they how they framed it and how they saw it as a menace. This makes me think of what if you made an ad that was like, I am menstruation. I am painful. I have invaded the woman you love. Right. You know, and then it's like these all these like men swearing to beat menstruation. Yeah. And I think that this is this goes to the idea that it was parents trying to do something for their kids. And it was more about how tragic autism was. And it's framed in the same idea that autism was this epidemic. And what do you do with
Starting point is 00:33:09 epidemics? You try to curb an epidemic. Right. You got everyone to stay home and like, well, actually, apparently, if you have an epidemic, you all cram people into rallies and have them shout on each other. So it isn't until 2010 that Wakefield is strutting his medical license. So from 1998 to 2010. Yeah. And does that happen for something unrelated just by happenstance? What happened is there was tons of inquiries and look at investigations all started uncovering problems. Turns out that two of the kids who were reported to have suffered from autistic and trocholitis after the MMR had never been diagnosed with autism at all. And then Wakefield had also made sure that children in the study who had previously been described as normal before
Starting point is 00:33:58 receiving the vaccine had actually been flagged for development to issues like hand flapping and language delay. So he was just really careless. Right. So vaccines cause autism. But some of the kids aren't autistic. Yeah. And some of the other kids were showing signs of autism before they were vaccinated. Mike, vaccines cause kids. All right. We didn't have this. What really brings this into stark contrast is that Wakefield had been paid. He had failed to disclose to the editors from the Atlanta that he had received a lot of compensation from lawyers who were planning to mount a class action lawsuit against against vaccine manufacturers. This kind of horror David versus Goliath fighting the evil Goliath of capitalism,
Starting point is 00:34:42 Big Pharma, was actually big law capitalism. Nice. Yeah. I mean, certainly in America today, we have no further experience with what seem to be grassroots movements that are actually strategically manipulated causes that serve the needs of some sort of corporation or profit seeking group. But basically the point is he was making a lot of money by doing this. Right. Everything came tumbling down. I am curious about where we incorrectly perhaps draw the line between like the child being a problem and the society that doesn't support parents and that makes almost any form of parenthood incredibly punishing and potentially financially disastrous. The first place I always want to take that is like how do we support the family? Like is society supporting
Starting point is 00:35:33 this family and like what support do they need? Yeah. Of course the answer is often like money, money or kids. Autistic people need you to support them. Right. This is what I keep on trying to say. I say this is an autistic person. I say this is somebody who loves autistic people is that we're human beings. We are fine as just as we are. What really needs to happen is changing the world to adapt so that autistic people can live in it. Right. I was born in 1990, the year the ADA and the Individuals with Disabilities Education Act passed. I think a lot of people think oh I'm so inspirational or think that autistic people are so inspirational as they can do this. But it's a lot less sexy to say that autistic people are having a difficult time because
Starting point is 00:36:20 the world sucks because it puts more on us on them. Whereas if autistic people are just inspirational or angelic then it doesn't cause us to change anything. Oh so you're like a murdered girl at this point. It's like isn't she such a tragic angel and it's like she died because of very preventable and endemic violence against women and like this could have been predicted. It's like we would rather like see people as tragic figures who like you know just so noble so brave and just completely unrelated to my choices. It's interesting. Yeah it's like you know my whole point I mean I'm a political reporter at heart is that we are a product of policies. The only way I am able to even do this is because the policies like the ADA and the IDEA and they're not even fully funded.
Starting point is 00:37:06 They're not even fully realized. Well also it takes away the concept that private donors can privately fund their own solution and they just disrupt government and make your own spaceship There's also an interesting generational handover story right in the previous times when we did have fewer diagnoses of autism and it was really the much more severe cases the kind of the quote unquote movement was led by parents whereas after these laws in 1990 you now have a generation of people who self identify as autistic and are finally able to sort of form the movement themselves and take the movement in the direction that they want. So it feels like we're in the midst of this like handover. So you're partially right. Initially it was parents being
Starting point is 00:37:52 told that they need to send their kids away to these institutions. Then the second part I would say from like the 1970s to the 1980s and 1990s was parents trying to get their kids out of institutions but because like you said the most vocal parents were the ones who have kids with the most support needs they became seen as the real spokespeople right and then now you're seeing that even autistic people like myself but that even autistic people with higher support needs who can now speak for themselves because of things like assisted communication they're now trying to reframe the nearest. Right do we want to talk about sort of where the anti-vax movement went after Wakefield stuff was debunked because it is amazing how resilient it is considering that like the entire
Starting point is 00:38:32 basis of it has now been completely destroyed. Yeah isn't it weird that people believe things for which there is no evidence and only proof of the opposite like it's such a I've never heard of that happening elsewhere. The classic point is that Donald Trump said that on the debate stage about autism being an epidemic five years after Wakefield lost his license. Right. What I think has happened now is that oh is that Wakefield and a lot of these other people now see themselves as martyrs heroes and brave truth tellers. Can you tell us about just where the anti-vax movement I suppose or like that culture like where it is like what is its health what kind of organism is it right now. I think for a long time anti-vaccine conspiracy theorists were very much it was very
Starting point is 00:39:17 kind of a horseshoe because you had kind of crunchy liberals who didn't like vaccinating their kids and putting toxins in their kids to your point about toxins and then you had conservatives who just don't like government mandates. This is one of those Oregon country fair to Salem gun show issues. Yes. Yes. Yes. I think nowadays it's become a lot more right wing. Yeah. You see anti-vaxx just running in Republican primaries in Texas. In many ways I feel like it fertilized the ground for QAnon. I mean it is like worth noting that this has a toll like I did work on this for a story months ago and the number of measles cases in the United States used to be like 60 in the entire country and it's now like 1200. That's bad. Like there are communities there's a place
Starting point is 00:40:05 outside of Seattle fashion island which is this really rich kind of enclave that you have to take a ferry to get to and as of 2015 one in five kids in the schools was not vaccinated. Oh my god. That's bad. It's so weird how like rich kooky people and prisons are like these two populations that some epidemics are going to be able to rip right through like that's a weird thing to have in common by choice. It's almost like rich people almost feel like they're too rich to participate in the social contract. Right. Yeah. I think that explains a lot and also too rich for their bodies to fall victim to like poor people disease like I think there's something like there was something in like the very early days of AIDS that scientists and people trying to wrap their heads around
Starting point is 00:40:52 the disease like originally rejected the concept that it could be transmitted to babies through cord blood. Yeah. And part of the pushback was like it's a gay man's disease. Homosexuals get it. How could a baby get it? It's like it's people get it. I also think that there's a media story here too though in that the anti-vax movement is primarily a right wing movement but because that's kind of like a dog bites man story at this point like right wing people have crazy conspiracy theory that isn't as interesting to report on. So I do think that communities like Fashion Island that are like these super left wing enclaves with like a bunch of crunchy granola hippies those things just get much more media attention. Yes. Yeah. Cause it used to be like
Starting point is 00:41:34 you said it used to be like people on the fringes of both sides but now it's because I think oddly enough I think that the Trump presidency has made it even more of a right wing venture. There's something so appealing about these like very tight and easy stories especially when there's sort of societal correlations involved. Yes. Where it's like the vaccines rose at the same time as autism rose and it's like well a autism isn't quote unquote rising in this kind of one to one way and secondly there's literally a million other things that change in society during that 20 year period like if you look at sort of the the rising crime rates in America in the 1980s match perfectly with the fall of vinyl records. And as disco fell too.
Starting point is 00:42:18 Yeah. But it's like there's literally an infinite number of things happening in America at that same time and you could draw the same parallel trend line along the rise of autism rates with a million other things. The number of hours B Arthur is on crime time in a given year. Sure. We see this with a lot of social issues too that you know as like trans rights become more accepted there's a growing number of trans people because people are comfortable coming out and that of course is seen by reactionaries as somehow a threat to society like oh my god the number of trans kids is growing and it's like that's actually good news and you can say that all of these extra diagnoses of autism since the 1980s that's good that means kids are getting the help
Starting point is 00:43:01 that they need or like maybe if we actually see the rise in autism rates then maybe we can put more money in schools and special education disability education and things like that. So like maybe maybe it's not a reason for a moral panic but it's a reason that we can probably make schools better for disabled kids. This is actually this is how I feel about my kitchen which is if I'm like Sarah you're going to do dishes and then I let go and I'm like oh my god like why did I save all of these cottage cheese containers and now I have to clean them and why am I saving them but I can't throw them out I would be you know and then I'm like fuck it I'm watching Matt about you if every time you try and engage like you just focus on like the
Starting point is 00:43:41 overwhelmingness of it and are like what does this say about me and it's like nothing it says nothing everyone has dishes every country has kids who need more help than you've been giving them to this point just like yeah yeah yeah I have not done my dishes. Yeah like I mean it says that you like cottage cheese Sarah that's all it says about you. It does say that which is pretty damning according to some people but you know I stand by it. I think what I want to say essentially is that I mean the thing that I always keep on saying is that the only way that we can get people to accept autistic people is through funding schools you know having a robust social safety net so that they can't succeed. All of these things that require a lot of work and also require us listening
Starting point is 00:44:22 to autistic people they are who they are they've always been there we just haven't wanted to listen that's a good note to end on Eric thanks so much for coming on thank you so much I love doing this thank you and I you know I know that we're just I guess going to be having at least six moral panics at any given time forever I accept that and I'm happy that we got to have you on to talk about one of them because you are smart and being a watch one of the many watchdogs that this world requires and it's just great to have people come and talk about you know what they are watching thank you thank thank you for this I mean I put in a lot of hard work on this and I put a lot of work on on this book wait and do you want to say again just um what is your book called when is it
Starting point is 00:45:07 out my book uh we're not broken changing the autism conversation comes out august 3rd it's a leo your book's a leo pre-order at uh on indie bound or your local book shop if you want to okay fine amazon yeah we hope you make enough money on the book that you can move to one of those enclaves where people don't vaccinate their kids that's the dream I hope that you can achieve the millennial dream which is having as many streaming services as your heart desires

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