THINKING PERSON'S GUIDE TO AUTISM

Time 2021-01-02 16:09:47

Web Name: THINKING PERSON'S GUIDE TO AUTISM

WebSite: http://www.thinkingautismguide.com

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"There are so many basic human rights that autistic people are being denied just because society isn't accommodating autistic people." Read about this issue and more, such as why just because autistic people are good at "systematizing" doesn't mean they are all destined to be engineers, and "how a different style of education is appropriate for a systemizing thinker." Our editor Carol Greenburg and NeuroTribes author Steve Silberman join Simon Baron-Cohen for a Zoom discussion on Baron-Cohen's new book on autism, The Pattern Seekers.----Katherine Hill: Hi everyone, I'm Katherine Hill for Basic Books, and I'm excited to welcome you to today's conversation about Simon Baron-Cohen's new book, The Pattern Seekers: How Autism Drives Human Invention.Joining us is Steve Silberman, author of the award-winning NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Steve's articles have appeared in Wired, New York Times, New Yorker, and many other publications.Special education advocate Carol Greenburg is also with us today, diagnosed with autism at 44. Carol's understanding of disability is enhanced by her autistic son's daily progress in communicative skills. She is an editor at Thinking Person's Guide to Autism, has spoken at venues throughout the United States, and has written articles for and been interviewed by media outlets, ranging from Family Circle online, to Child Mind Institute, Spectrum, Parents.com, and Neurology Now.And last, but certainly not least, I'm happy to introduce the author of The Pattern Seekers, Simon Baron-Cohen. Simon is professor of psychology and psychiatry and director of the Autism Research Centre at Cambridge University. He is the author of 600 scientific articles and four books, including The Science of Evil, The Essential Difference and The Pattern Seekers. Please join me in welcoming Simon, Steve, and Carol.[image: Zoom screenshot of Steve Silberman, a white man with short salt-and-pepper hair, wearing headphones.]Steve Silberman: Hi Simon and hi Carol. Thank you very much for joining me this morning. I wanted to welcome Simon and Carol to this conversation, which is really a historical conversation in some ways. Simon, I hope you would agree with me that one of the most important developments in recent years is autistic people demanding a place at the table when autism is being discussed in society. In that spirit, I've invited Carol, who was not only diagnosed late in life, but is also the mother of a wonderful autistic son. I thought it was important that we walk our talk by having Carol be part of this conversation about autism. So thank you Carol very much for participating.Carol Greenburg: Thank you for inviting me.Simon Baron-Cohen: Steve, maybe I should just pick up on your use of the word demand. It's true that some autistic people demand to have a voice, but equally it's for any of us who are writing about autism, and talking about autism, the responsibility is on us to make sure that autistic people are included.Steve Silberman: Yes. In fact, is it not true that when you were president of INSAR, that you insisted that there would be a committee of autistic researchers and autistic representation on the board?Simon Baron-Cohen: Yes. For those people who don't know, INSAR is the International Society for Autism Research. And for every 10 years, there's been a community of scientists studying autism but not really doing it in partnership with the autism community. So it's very important that we have autistic people on the board. And increasingly there are scientists who are autistic themselves who have a different perspective and we need to hear it.Steve Silberman: Absolutely. Simon, I promise that we will get to your new book in my second question. My first question is a big one. In 2017, you were invited to give a keynote speech at the United Nations. You chose the topic of autism and human rights. And you concluded your address by saying, "I want us to be continuously asking people with autism, what their lives are like and what they need so that they are fully involved in shaping their future. Only that way can we ensure their human rights are met." Well, that's a beautiful statement. But you began your career at a time when autistic people were decidedly NOT invited by clinicians and researchers to be fully involved in shaping their future. Please tell us a bit about your personal evolution along those lines, and feel free to go back as far as your relationship with your sister, who was multiply disabled.[image: Zoom screenshot of Simon Baron-Cohen, a white man with short light brown hair,]Simon Baron-Cohen: Sure. I've been involved in the field of autism research for over 35 years. A lot has changed in that time. You're absolutely right that back in the early '80s, we weren't consulting autistic people. We only really knew about a small fraction of the spectrum. And there wasn't really a concept of working together with the people you're studying. So that has been a big change over that timeframe.When I made that statement at the UN, my speech was entitled "Autism and Human Rights," because it's increasingly evident that autistic people are falling outside of basic human rights the right to education, the right to employment, the right to dignity, the right to leisure, the right to access to health, even access to justice in the criminal justice system. There are so many basic human rights that autistic people are being denied just because society isn't accommodating autistic people.Steve Silberman: It's even worse than that. In some of the history that I wrote about in NeuroTribes, it's very chilling how dehumanized autistic people were by clinicians like Ivar Lovaas [the founder of ABA, Applied Behavioral Analysis for autism]. They really did not give autistic people even the recognition that they were human beings. So we're coming out of some very dark chapters of history.Simon Baron-Cohen: Then you asked me about my sister. She was obviously a profound influence on me. She was the next child in the family and was born with severe learning difficulties, so she never developed language. She had really the development of a young infant in terms of her mental age as they call it. She was in a wheelchair. She couldn't feed herself. She had profound, physical and intellectual disabilities. But her life spanning from the 1960s through to just recently, she saw all of the changes that we're talking about as they applied to the autism community. Back in the day as a child, she was in an institution. Out of sight, out of mind. That was the mentality back then, and the same was true for many autistic people put in institutions. So I think we don't want to spend too much time on this point, but there have been huge changes in how we think about disability, and the journey is not over. The end of my book is really a call to action to try to address some of the very fundamental inequalities that still exist towards autistic people, like the fact that the majority of autistic adults are unemployed and have very poor mental health as a consequence.Steve Silberman: Before we move on to your book, Carol, is there anything you want to respond to in what Simon just said?[image: Zoom screenshot of Carol Greenburg, a white womanwith long platinum hair pulled back, wearing glasses.]Carol Greenburg: It goes further. Our rate of unemployment is quite high. But not only that, a lot of us have been talking lately about how not only do we not have access to so many things because [people] get access through employment, and through the money you make in the United States, obviously health insurance. Sometimes when the talk revolves entirely around jobs that we can or cannot get jobs that we may or may not be suited for there are a lot of stereotypes at work about what jobs would be most suitable for us, and what jobs would tend to be off limits to us, and that's limited.But also if you think of us only in terms of what we can to put it crudely what we can produce to enhance the gross national product, you essentially commodify us as human beings. So as you said in your address, we need access to employment, but we also need equal access to everything else, to make sure that we are included as full human beings with the full range of human emotions. Even though we might present them in ways that are hard for non-autistic people to understand.Steve Silberman: Absolutely.Simon Baron-Cohen: I think it's really important, Carol, that you've raised this issue about commodifying autistic people. That would be a bad outcome. When we're trying to increase employment for autistic people, it's to give them the same opportunities that everybody else enjoys, which is autonomy in their lives, and having a sense of purpose. It's not about whether they're making profits for their bosses.Carol Greenburg: I didn't mean that.Simon Baron-Cohen: Right. No. But it's ultimately why do we go to work? We need to have a sense of purpose every day. We need to have contact with society, because we know that social isolation is not good for you. We need to feel valued, but the problems don't start with employment and autism as you know. They start all the way back, even with primary school and with getting a diagnosis, and getting the right support right through your life.Carol Greenburg: And depending on who you are, and what color you are, and what gender you are, or what gender you are perceived to be, whatever gender identity you actually embrace, you are more or less likely to receive diagnosis and the accompanying services.Steve Silberman: Absolutely.Simon Baron-Cohen: I think the other important point you were just making, Carol, was about how we have to guard against stereotypes. That there isn't a single kind of work that autistic people are suited for. We have to challenge the stereotypes continuously, because they can creep in.Steve Silberman: In a way, Simon, your new book, The Pattern Seekers, is an elaboration of a pattern that you started recognizing in the late '90s. I think it was in 1997, you wrote a paper with Sally Wheelwright and others called Is There a Link between Engineering and Autism? Then you went on to try to study that link at MIT, but were actually suppressed, which is an interesting story that you tell in the book. Please tell a short version of that story again. You and I started talking in 2001, because I'd written about autism in Silicon Valley for Wired magazine, and it ran alongside a piece of yours on the Autistic Quotient. You ended up studying the genetics of a similar but different community -- Eindhoven in the Netherlands. First of all, tell us the anecdote about MIT, because it's interesting and illustrates the pervasiveness of anti-autistic prejudice. What did you learn from your work in Eindhoven, and how did it contribute to the big idea of "The Pattern Seekers"?Simon Baron-Cohen: Sure. Let's take things back to 1997, because that was our paper where we looked at the occupations of fathers and grandfathers of autistic kids. We also tried to look at mothers and grandmothers, but not enough of them were working outside the home for us to get a clear idea of what their aptitudes would be outside of being a homemaker. So we looked at the fathers and the grandfathers. And what we found was the fathers of autistic kids were overrepresented in the occupation of engineering. So were their fathers. So that's the grandparents on both sides of the family, so maternal grandparents and paternal grandparents. And we looked particularly at engineering as an occupation, because we knew that autism was increasingly looking genetic, but the parents may not have autism.So if you go back a few generations, you may not see autism, but you may see aptitude for understanding systems, aptitude for understanding the physical world, how objects work and how systems work. So that early study was the first clue. Then as you mentioned, we thought the next best place to test this link a genetic link between aptitude and understanding systems or patterns and the likelihood of autism in the family would be MIT, because MIT attracts people who are really good at understanding systems, whether it's in physics or math or computer science.We tried to look at the children of the alumni at MIT, and this was at the invitation of the alumni association at MIT, because they were noticing that amongst their members, they had very high rates of autism in the family and their kids. The university initially approved the study through their ethics committee, but then the study was shut down, perhaps because of the concern about reputational risk to the university.So we had to relocate the study and we decided to look at the city of Eindhoven in the Netherlands. Eindhoven is like Silicon Valley, but it's in Holland. Eindhoven is a city where one third of the jobs are in IT, information technology. Eindhoven is also where they've had the Phillips factory for over a hundred years, attracting people who are really good at electronics and engineering. They've also got the Eindhoven Institute of Technology in that city, which is the equivalent of MIT.So for many reasons, it was an ideal city to look at to look at the autism rates compared to two other Dutch cities that were equivalent in size, Haarlem and Utrecht. So we matched them for demographics. What we found was that autism rates were indeed twice as high in Eindhoven compared to these two other Dutch cities. So we were getting these clues that maybe for genetic reasons, there was a link between autism in the family, and an aptitude for understanding systems and patterns in the parents.Steve Silberman: While I was reading your book, I was reminded of something that happened while I was researching "NeuroTribes," which was that I found a book from the early '80s called "Silicon Syndrome," written by a marriage and family therapist in Silicon Valley. Keep in mind that Lorna Wing the cognitive psychiatrist who was, I assume, one of your mentors or at least a huge influence on you had not yet proliferated the diagnosis of Asperger's syndrome. But the description in that book, "Silicon Syndrome," of what the author called "sci-tech" men, was so reminiscent of Asperger's syndrome, that I ended up calling the author and actually telling her that. I remember one thing that she said was that sci-tech men in her view, when they have problems in relationships, "seek information like Data on 'Star Trek'." So that struck me as very familiar.Another thing that happened was that when "NeuroTribes" came out, one of the first calls that I got was from a product manager at Microsoft who told me, "All my top debuggers have Asperger's syndrome. They see the code as a pattern in their minds, and they look for the breaks in the pattern, and that's where the bugs are." How did your experience in communities like Eindhoven produce the big idea of "The Pattern Seekers and what is that big idea for people watching us?Simon Baron-Cohen:The big idea in the book "The Pattern Seekers" is to ask the question, is there a link between autism and the very human capacity for invention? When we think about invention, I argue in the book that invention relies on a certain way of thinking, a certain pattern seeking but it's not any old pattern, it's very special patterns called "if and then" thinking. It's logic. It derives from an analysis by a 19th century logistician called George Boole.Many people will have heard the phrase "Boolean logic." You can think of any human invention going all the way back 70,000 years when I think we see the first evidence of invention in the archeological record as requiring this "if and then" thinking. If we take an example from archeology, the earliest musical instrument, which was found 40,000 years ago, was a flute made from a hollow bone of a bird. The inventor must have thought, "If I blow down this hollow bone, and I cover one hole, then I'll get a particular note. But if I blow down the hollow bone and uncover the hole, then I get a different note." So what you see in this quite impressive complex tool that one of our ancestors made. Homo sapiens was experimenting with these if-and-then patterns.Fundamentally, I think that underlies every invention that we've got, whether we're looking at smartphones today, the invention of a vaccine against COVID, or the bow and arrow 75,000 years ago. It's the same if-and-then logic that drives human invention. It turns out that autistic people from our research and Carol, I'll be really interested in your reaction to this perform better on tests of understanding how systems work, being able to spot these if-and-then patterns.Carol Greenburg: Okay. I have a confession to make: I've been practicing using the if-and-then sequence to improve my ability to communicate since I read Pattern Seekers for the first time. That is a very reasonable framework. And if I can use that to communicate with non-autistics, and we understand that I have a natural difficulty in communicating with non-autistics, then perhaps non-autistics will have an easier time understanding me without having to work extra hard as they so often seem to be doing.Steve Silberman: Or at least say they're doing.Carol Greenburg: They do claim to, yes. And I'd like to say that I give people the benefit of the doubt but in fact, I don't. I think it's usually better to observe people for a very long time, and figure out their patterns of behavior, and make an informed preliminary judgment about whether this is a person who might be trustworthy whether this is a person with whom I might have something in common and can continue to, as Jane Austen, would say, improve our acquaintance. But yes, I think that that's an excellent construct for autistics we're not only doing it unconsciously, but to take it from the unconscious into the conscious, and consciously use it as a way of reaching out to non-autistics.Simon Baron-Cohen: I like that a lot. I mean, in my book, I call this way of thinking the if-and-then logic systemizing. When you're trying to understand a system in terms of its rules. And you see young autistic kids become quite obsessive to use that word about particular activities...Steve Silberman: Or passionate. Passionate.Simon Baron-Cohen: Passionate, right? And we can all imagine autistic kids we've met who might become passionate about electric light switches in the house where they all have to be either in one position or the other. And if anybody disturbs them, the kid gets quite upset. But they're trying to figure out the system of light switches.Carol Greenburg: If you walk into a physicist's lab and you interrupt her experiment, she's going to get upset. And that's what you're doing. You're walking into the physicist's lab, and you're interrupting their experiment, and they have to do it a certain number of times, and they have to do it a certain number of ways, in ways that non-autistics don't seem to see. If you use the switch from one angle, it might produce a different result than using it from another angle. We're not repeating the same activities over and over again, we're using subtle different ways of manipulating objects that non-autistics don't seem to be able to pick up.Simon Baron-Cohen: Exactly. Steve, you were asking about the history of what's changed over the last few decades. We used to think of autistic kids and adults, when they were engaged in repetitive behavior, we used to see it in negative terms. The clinicians used to say, "We should stop the child from doing this repetitive behavior." Whereas the book argues the opposite. This is the way that autistic people learn. This is the way that they spot patterns in the world. And sometimes those patterns could be very valuable.Steve Silberman: Right. And I was somewhat relieved to see that in The Pattern Seekers, you don't limit the functionality of systemizing thinking to say computer programming or science. It's also in art and music as well, and has advanced society like that.Carol Greenburg: I stink at math.Steve Silberman: I've heard a lot of autistic people say, "What about me? I'm not into debugging computer software."Simon Baron-Cohen: But you might find that the same person that same autistic person who says "I can't do math," or "I'm not interested in computers" takes a very systematic approach to some other part of life. It could be cooking. Because when we cook, we try to identify the rules, the if-and-then rules that will end up with a particular outcome. And then we start playing with the rules to see whether we can optimize that particular dish that we're cooking. It could be music where you play the same riff, the same sequence of notes. So again, it's about patterns, but then you start to vary the pattern. And that is invention, just as inventing a new dish to eat is invention.Steve Silberman: Somebody recently sent me a photograph of the restaurant where the great Bach interpreter of the 20th century Glenn Gould ate every night that he was in Toronto. He always ate at the same table and always ordered the same meal. You talk about that in the book actually.Simon Baron-Cohen: I do. So in both of our books we look at figures in history. You looked at [Henry] Cavendish, and I looked at [Thomas] Edison. I also look at Glenn Gould. They're figures in history who seemed to have a lot of autistic traits. They were fantastic at figuring out patterns, figuring out how the world works. Of course there are dangers to making any diagnosis of someone who's not alive just based on their biographies...Steve Silberman: Right. And I want to quickly say, because it's a prevalent myth about my book, that I did not just decide to diagnose people like Henry Cavendish. I spoke to people like your mentor, Uta Frith, and Oliver Sacks, because I'm not an authority, I'm a science writer so I always had someone with experience in doing diagnoses to confirm.Simon Baron-Cohen: Absolutely. But I think the general principle is that you can't really diagnose someone who's not alive just based on their biography. You can get a clue, but we don't know whether they would have needed or wanted a diagnosis. The biographical record is always full of gaps.So in our research, we tend to focus on people who are living. And maybe I can just mention one of the studies in the book involves 600,000 people. So it was a big population study, and we gave everybody three measures. One was a measure of systemizing. How interested are you in systems or patterns? A second measure was empathy. And I'm sure we'll talk about that, but how easily can you pick up on what other people are thinking and feeling? And then a third measure was autistic traits. So you just go through it's called the AQ, the Autism-Spectrum Quotient and then you just say whether you agree or disagree with the statements. And each statement is one or two autistic traits.And that way you can have a metric, a measure of how many autistic traits the person has. I know all kinds of interesting results came out of that big study. We also had 36,000 autistic people take part in this study. So it's a big online study. One of the things we found was that if you looked at people working in STEM science, technology, engineering or math they have more autistic traits than people who don't work in the STEM. So was another clue that there's some link going on.If you look at people who score high on our systemizing measure and look at their DNA, we found that the genetic variants that are associated with scoring high in systemizing overlap with the genetic variants that are associated with autism. So even at a molecular level, we were finding there's a link between being autistic and the genes that code for aptitude in pattern recognition.Steve Silberman: Yeah. I want to point out that there's an interesting distinction between your hypothesis and your work and the notion of "savant" abilities that was much talked about in the '80s and '90s, in the "Rain Man" era. Darold Treffert, who was really the leading clinician who studied savant abilities, just passed away. So I want to have a little moment about that.One of the interesting shifts in the world of autism is that I spoke to Darold about a young jazz musician named Matt Savage, who had been diagnosed with PDD-NOS. Matt was introduced to me by Doctor Treffert as "the rarest of the rare" a savant who could think creatively. And the notion that savants could not think creatively actually came out of some of the work that you did Simon, and some of the work that Lorna Wing did, and that whole generation of...Carol Greenburg: Sorry Simon!Steve Silberman: Sorry, but it's a true thing. In any case, let me just finish. What's interesting about Matt Savage is that he has gone on to become a jazz musician, and he's amazing, and he's got a great imagination, and he's not the "rarest of the rare," more like relatively common. And the mechanism that you postulate in The Pattern Seekers is not some special savant thing. So talk about that. We're not talking about like rare savants anymore. We're talking about something that's built into the genetic background of autism.Simon Baron-Cohen: When we use that measure called the Systemizing Quotient, it's a questionnaire. It's in the back of the book or you can find it online, but the idea is that we all systemized to some degree. It's part of what makes us human, is that we take an interest in how things work. We're interested particularly in cause and effect. And no other species seems to be interested in this, to experiment in this way.But this measure gives rise to a bell curve. So it's not like savants do it and no one else does it. There's a bell curve right across the population. Most of us are just average in terms of how interested we are in these patterns. Autistic people we found in that big study score above average, in terms of how interested they are in patterns and Carol, you were giving a great example of even systemizing people in terms of their behavior. How predictable are they? How consistent are they before you can feel like you can trust them?Autistic people seem to be shifted to a higher level, whether they show savant abilities or not. Probably the jazz musician you described who were autistic, that's not true of every autistic person or even the majority. But that's just coming out as the extreme end of a distribution, a spectrum. So I think we have changed our thinking towards the idea that there are traits in the population that lie on a spectrum. We all have autistic traits, autistic people just have more of them than the rest of us, and we all systemize. Autistic people seem to systemize more than the average person in terms of needing predictability in searching for those predictable patterns.We all empathize to different degrees, too. In that big study, we categorized people according to whether they were more towards systemizing or more towards empathizing. This gives rise to different profiles in the population type E if you're more towards empathy, type S if you're more towards systemizing, and then the extremes of these. In my book, I give this as an example of neurodiversity.Neurodiversity is not just about people with a diagnosis. It's about the fact that we all have different brains. Even the three of us on this call, we all have different brains. We have to acknowledge difference and respect that one isn't better or worse. We just have different patterns, different profiles.Steve Silberman: Absolutely. I wanted to ask about one of the most provocative ideas in the book. One of the things I've noticed in just being friends with autistic people I have a lot of autistic friends after writing NeuroTribes is that they are challenged daily by anxiety. Simon, you postulate in the book that that anxiety is a product of not being able to readily systematize human relationships as dependably as other systems.Simon Baron-Cohen: That may be one factor. I think a lot of anxiety and indeed poor mental health in autistic people is to do with lack of support and stigma.Steve Silberman: Absolutely.Simon Baron-Cohen: And having been traumatized, many autistic adults that I meet tell me that they were bullied at school back as a child, that they were called terrible names, they were made to feel like they were stupid when they weren't. Anxiety comes from low self-esteem as well.Steve Silberman: Yes. Carol, what did you think of that hypothesis? That some autistic anxiety is caused by the fact that human relationships are not as easily systemizable as other kinds of systems?Carol Greenburg: This gets problematic because this gets into the whole empathy question. Do you mind if I...Simon Baron-Cohen: No. Let's go for it.Steve Silberman: Yeah. Go for it.Carol Greenburg: Okay. So Simon, I've been reading a lot of your work for a lot of years and you have taken great pains to talk about the differences between essentially two types of empathy. I want to make sure I'm understanding you correctly. Okay. So there's cognitive empathy, which is the ability to read social cues around you. Right? Is that correct?Simon Baron-Cohen: I would define cognitive empathy as the ability to imagine what someone else is thinking or feeling.Carol Greenburg: Theory of mind.Simon Baron-Cohen: Theory of mind. Yeah.Carol Greenburg: All right. Okay. I'll go back to that. And then there is the other type of empathy and my language is failing me a bit...Steve Silberman: Affective.Carol Greenburg: Affective empathy, which I recall your having written is relatively unimpaired among autistics. And we tend to have a greater difficulty with cognitive empathy.Simon Baron-Cohen: So just for the benefit of the audience, affective empathy is having an emotional experience that's appropriate to somebody else's thoughts and feelings. So it's the response element, how do you feel?Carol Greenburg: Compassion.Simon Baron-Cohen: Compassion, for example. That would be one of them.Carol Greenburg: It would be all of those words that we tend to use connected with emotion, and that is relatively unimpaired among autistic people.This is my understanding of the way you have presented it. Okay?Simon Baron-Cohen: Yeah.Carol Greenburg: And one question I wanted to ask you, and hopefully we can get into later, is when you're testing people for their amount of empathy, are you talking about both types of empathy, or are you talking about cognitive empathy?Simon Baron-Cohen: Different tests can try to assess or separate different types of empathy. So one test that our group developed was called the eyes test. I'm sure you've seen it, when you look at photographs of people's eyes. So it's just one chunk of the face. It's not the whole face. And you have to pick which word best describes what the person is thinking or feeling.And autistic people we've done this in hundreds of studies as a lab, but also in the science community autistic people tend to score lower on that test. Being able to read facial expressions when the cues are very subtle. And I would say that's cognitive empathy. It's just one example of a test but you don't want to rely on a single measure.Carol Greenburg: All right. So in terms of your question, Steve, what do I think of it? Well here's the thing. Cognitive empathy, the ability to read cues and things what we're finding more and more, and I think what research is finding more and more, and what certainly autistic people know from our lived experience, is that we do have a lot of trouble reading social cues, facial expressions, and tones of voice among non-autistic people, but we don't have that same trouble among autistic people.Steve Silberman: Absolutely.Carol Greenburg: Now, in terms of affective empathy. When I noticed that you had written that [affective empathy] is relatively unimpaired, I started thinking about Damian Milton, and an article he wrote recently about double empathy and the double empathy problem. I wrote an article about my own son and myself about this very issue. That's a real thing.I have an experience of life where not only am I highly tuned to sensory input, but I'm highly tuned to emotional input that I may not understand. So I don't read microexpressions. You're quite right about that. I don't read microexpressions but I do read macroexpressions. I know if somebody looks generally happy or generally sad, but I can't gauge the level. I often say that I don't know if somebody just broke a nail or lost their best friend. I have no idea.So I walk around an office, and one of the reasons I have trouble working in an office, and one of the reasons I lost a lot of jobs, was that I was trying to give support, appropriate support, emotional support, to my coworkers who seemed upset. And they thought it was really weird because all they had done was broken a nail. And I was talking to them as if their dog had just died. So those kinds of misunderstandings come up all the time. It's not that it's unimpaired. It's that it's an overdrive all the time. That's not unimpaired. That's real different.Simon Baron-Cohen: Yeah. So theory of mind...Carol Greenburg: I think I have some impairments in theory of mind. However, they don't translate the same way among other autistics. I have trouble reading you guys but I don't have trouble reading John Elder Robison at all. And he's pretty low affect. So was my dad. No trouble.Simon Baron-Cohen: So I think you're raising a whole bunch of really interesting points. We can try and cover some of them. But when you're talking about being able to judge what is appropriate, for example, at work, about how much do you give support to coworkers. That judgment is something that a lot of autistic people report that they struggle with, making the appropriate social judgments based on what other people might think or how they might be perceived.And just going back to the big study we carried out, 36,000 autistic people took part and they filled in the EQ, which is the empathy quotient. And by their own reports, they scored lower than typical people in the population. But the thing is, what you're describing is you've got your affective empathy almost on overdrive.Carol Greenburg: Constantly on overdrive. Just the exact same way my sensory issues are in constant overdrive and it's exhausting. Yeah. That's an issue.Simon Baron-Cohen: Absolutely. By itself, it's a very important clue that autistic people do have empathy. They do care.Carol Greenburg: We have empathy. And we all laugh when people say that we don't have empathy. And I can't believe I'm about to tell you this, but I actually wrote in the margins [of your book], when I started to see the definition, "Poor Simon," because you keep getting criticized for saying that we don't have empathy, when in fact, I don't think you've ever said that. I think there's been a lot of misunderstanding around the whole concept. And I think there's some cultural and linguistic misunderstanding about what British people mean when they say empathy, and what Americans mean when they say empathy too. I think there's just a whole lot of stuff to unpack there. And I don't think you actually ever said we don't have any empathy but there's a lot there.Simon Baron-Cohen: Thank you for clearing that up, because there are lots of misunderstandings. The other thing you've raised is whether autistic people might find it easier to communicate with other autistic people. That's a really interesting idea.Carol Greenburg: Most of the autistic people I know say they can, and I know I can, and I know my son and I can. It's pretty obvious.Simon Baron-Cohen: And is that because of the style of communication that non-autistic people often don't say what they think, often don't mean what they say?Carol Greenburg: We say what we mean and we mean what we say. It's neurotypical people who don't say what they mean and mean what they say, frankly.Simon Baron-Cohen: Exactly. So in some ways, autistic people's communication might be a bit clearer.Carol Greenburg: Yeah. The thing is, we know how to listen to each other. That's the thing. Neurotypical people in my lived experience are constantly trying to get us to talk better, to speak more precisely as they see it especially my son, who is mostly non-speaking, I should add. Most of the time when you meet an adult speaking autistic like myself, you assume that their kid has what used to be called Asperger's. Not true of my son. He is mostly non-speaking. That is his greatest challenge. And yet we understand each other because I know how to listen to somebody who can't speak. And quite frankly, and that's a learned skill. I don't think that's an innate skill. I think it's mostly a learned skill. And most neurotypical people don't bother learning.Simon Baron-Cohen: Interesting. Can I pick up on Damian Milton's really interesting ideas about the double empathy problem?Steve Silberman: Yes.Simon Baron-Cohen: Whilst researchers like myself are looking at how easily can autistic people interpret facial expressions or infer what someone might think even if they don't say it, I think what Damian has highlighted is that it goes back to this whole point about including autistic people in the conversation. That the neurotypical world may not be making the effort to empathize with autistic people.And parts of what we talked about at the beginning was how society has left autistic people out. There's been a terrible exclusion of autistic people. It's still going on in junior school, in high school, in the workplace, in the healthcare system, autistic people are being excluded. And that shows a lack of empathy by society towards autistic people.Steve Silberman: Absolutely. We have to start winding up, and we have questions from the audience. So this is a perfect moment to drop in this question from someone out there. Thank you.How does the book address the issue of what social development opportunities are missed for humanity as a whole, by excluding diverse groups and autistics specifically in innovation, systems, institutions, disciplines, networks, policies, et cetera.Carol Greenburg: And by diverse groups, I would imagine this person probably means lesbian people, gay people, transsexual people, and non-binary people. There's a whole range of human behavior that seems to be skipped in our way of binary thinking. And I'm wondering if that's the next step in human evolution, if our understanding that we are less binary than we ever thought we were, that we are more fluid than we ever thought we were, in terms of race and gender. That's all.Simon Baron-Cohen: Sure. And I would just pick up on this question that when we think about diversity, we can think about people who may need a diagnosis autism, dyslexia, ADHD, language difficulties, there's a whole bunch of diagnoses. We can also just think about people who think differently. And I alluded to this earlier in our conversation, people who love patterns, but who may struggle to read people or vice versa. And at the moment, the education system assumes that we all learn in an optimal way in just one classroom, one type of classroom. So our school system is not addressing the needs of diversity.Steve Silberman: Yeah. And one of the interesting ideas in your book, I thought, is that you talk about how a different style of education is appropriate for a systemizing thinker. And so the usual valued approach is to go start really broad, and then people will narrow themselves down. But how are systemizing thinkers different and how can that be accommodated or used for education?Simon Baron-Cohen: Supposing you're the kind of kid who just likes to learn one topic at a time, and learn it really deeply, to really understand the patterns in that topic. I have a story about a kid called Jonah in the book, and he's really interested in leaves on the trees and trying to understand every kind of leaf in nature. And trying to understand what gives rise to the different patterns of leaves that we see in nature. That's a kid who just wants to study one thing.And yet the school system says, "Well, you can study geography or biology for just one lesson but then we've got to switch to something else." For a kid who has passions, what used to be called obsessions, but maybe a real strong interest in one thing, why shouldn't we cater to that type of child? It's just a difference in learning style. Let them pursue their interests and see where it leads.Steve Silberman: Absolutely. I have another question from the audience. It harkens back to what we were talking about with your sister, and the question itself makes an important point. So I'll just read the question. "Simon, you said your sister didn't have language. If she couldn't speak, I'm curious how you know that. AAC or alternative and augmentative communication was pretty much non-existent when she would have been growing up. People so often conflate speech, a motor function, and language, a cognitive function, despite clear anatomical differences between the two. The assumption that non-speaking people are incapable of understanding and using language causes them to be denied access to robust AAC." I very much agree with that. What do you think, Simon?Simon Baron-Cohen: This questioner is absolutely right. I've got to be careful how I talk about my sister. She didn't have any expressive language, so she didn't have any words that you can recognize. She would make sounds. She may well have understood a lot more than people realized. She didn't have the motor skills, like the manual control to be able to use something like a keyboard to express herself. So we really don't know. I mean, this questioner is absolutely right. We shouldn't make assumptions that because someone doesn't have expressive language that they may not understand quite a lot.Steve Silberman: Yes. Carol.Carol Greenburg: At least as we say at [Thinking Person's Guide to Autism], the least dangerous assumption is that we presume competence. And all of us, all of the editors have high support autistic sons, very high support. So their spoken and written language is quite limited. So we all presume that they understand everything we're saying. And we never talk about them as though they're not in the room. We talk to them about difficult subjects in as many ways as we possibly can. We ask their permission to talk to them. Certainly with my son, I say, do you want me to stop asking you questions? Am I annoying you? He'll say yes. And I know and there's communication right there.So we start with the premise that everyone can communicate and therefore everyone can self-advocate. A simple holding up of your hand, that says, "No" that's self-advocacy. That's where it starts. And autistic self advocates have mentioned that numerous times. The assumptions we make have to start with competence.Steve Silberman: I want to throw in a plug here for a movie that is going to be coming out online very soon, that is one of the best films about autism I've ever seen, and one of the best films about humanity I've ever seen. It's called The Reason I Jump, and it's based on the bestseller that was written by a young Japanese guy, but it goes much farther than the book. It looks at the lives of non-speaking people in many different cultures all across the world. And it's just an absolutely beautiful and very powerful film. So I'd recommend that everyone see it.I'm being told that we have to wind up. So I want to thank Simon very much for joining us this morning and very grateful to Carol as well for joining us. There will probably be more talk about this on Thinking Person's Guide to Autism.Simon Baron-Cohen: Can I just thank both of you. It's been a really wonderful conversation, so thank you to both of you.Carol Greenburg: Well, thank you both too.Steve Silberman: Thank you to both of you and everyone here. Take care.----This discussion took place on Dec. 16, 2020. Transcript and images courtesy Steve Silberman.A Conversation About The Pattern Seekers by Simon Baron-Cohen2020-12-19T13:24:00-08:00Shannon Des Roches Rosaautism|Carol Greenburg|neurodiversity|Simon Baron-Cohen|Steve Silberman|CommentsWe are beyond relieved that a COVID-19 vaccine is now available in the United States. At the same time, we worry about misinformation that could lead to people needlessly getting sick from this coronavirus or even dying. To help reassure our community members, we spoke with epidemiologist Dr. Rene Najera about COVID-19 vaccine myths and facts.----Thinking Person's Guide to Autism (TPGA): Could you please tell us about yourself, and the kind of work that you've been doing lately?Dr. René Najera[image: Black-and-white photo of a Mexican-American man with short curly dark hair,resting his chin on his hand, looking tired.]Dr. René Najera: I'm an epidemiologist, and have a doctor of public health degree from Johns Hopkins university. I also have a master's in public health, in epidemiology and also in biostatistics. I currently work for a rather large county health department in the Washington DC area. I'm also an associate at the Bloomberg School of Public Health, and an adjunct at the George Mason University global and community health department. So I do a little bit of everything. I'm also the editor of the History of Vaccines Project at the College of Physicians of Philadelphia.TPGA: That's a lot.Dr. Najera: Yeah, It's a few things.TPGA: We have a decade-long history of vaccine advocacy, including countering vaccine misinformation. And we've seen an uptick in vaccine concerns and fear mongering with the release of the COVID-19 vaccines. So I'm really grateful to talk with an expert who can give us accurate information, and reassure us about what's actually happening.And if you don't mind, I'll jump right in: Now that a COVID-19 vaccine is approved, can you tell us who is eligible, and how prioritization is working?Dr. Najera: So technically, everybody's eligible. We want to give it to as many people as possible, but as you can imagine, with the limited supply we have to prioritize. That prioritization was done with the recommendation of the Advisory Committee on Immunization Practices (ACIP), which is a CDC committee of scientists and citizens. The ACIP looked at who was getting the coronavirus the most. Not just the numbers, but also in rates and proportions. Who was dying from it the most.The ACIP also looked at who was driving the epidemic, because that is not necessarily the same as the people who are dying. For example, in the Washington, DC area the people who were dying in greater numbers tended to be white and more affluent. And that was because they also tended to be able to afford nursing home care or assisted living care. And that put them in a situation where they were very close with each other and with the people delivering the care.But the group that was driving the epidemic, in terms of spreading the virus around, was mostly Latino workers who can't stay at home because they're low wage employees, who cannot skip two weeks of work, and are living paycheck to paycheck. They have to go out into the community. They do housekeeping. They do manual labor. They also work in the care industry, including of elderly patients. They are not necessarily being affected as severely, but they certainly are being affected. This is what we call the social determinants of health: If you're a low wage worker, you're more likely to live in crowded housing. You're more likely to not have access to medical care. That also figures into the equation of wanting the priority group to be people who are being affected socially.Native Americans are also being affected in a very severe way. So they are also towards the top of the list. And then there are the critical infrastructure healthcare workers, and police and firefighters. I'm sure the military is also going to be getting it pretty soon. These are groups that are deemed to be critical.The people at the bottom of the priority list are very likely your typical, otherwise healthy 20-year-olds who are not showing any symptoms, who are not working in critical infrastructure, who are not taking care of other people.Children are probably not going to be getting the vaccine in this first round or in the foreseeable future, and they were not included in the clinical trials. Even though we know they do get coronavirus, it's not at the rates of adults, and certainly they don't have as many bad outcomes as adults do. So ethically, we can wait a little bit. And of course, there are exceptions: Unfortunately, I've seen reports about children in other cities passing away from this disease. But at the population level, this is the policy.People with disabilities tend to be excluded from pharmaceutical companies' clinical trials, because of issues of autonomy or because people with disabilities often have co-occurring conditions, and clinical trials tend to be more designed towards people who are the "perfect patient." Academic institutions are more likely to enroll people with, or living in, special circumstances. They're gonna be the ones who are probably going to look into this a little bit closer, and start recruiting disabled folks and children.TPGA: There are some reports that people with developmental disabilities are not being prioritized for vaccines, even though they are disproportionately affected by and dying from COVID-19.Dr. Najera: One important thing to remember is that this prioritization is just a recommendation from ACIP. The local and state governments are going to be the ones making the actual decisions as to who gets the vaccine. And that's where advocacy should come in. That's where you reach out to your local Board of supervisors, or to your local health board, and offer up the evidence, even if that evidence is from your own experience (even though we in science often shy away from anecdotes). But put it out there and do that advocacy more at the local level, as in the U.S., public health is very local. Make them realize that it is a need.Officials need to understand what the risks are, like overcrowding. The definition of overcrowding is two or more per room, but the risk is not becausethey're being crowded all in one room, necessarily. It's because you have a person, plus their caregivers in a home situation. Even if the caregivers go to another house overnight, you have 18 hours with a lot of people in one place.TPGA: Do you know if efforts are being made to make sure that the information going out to people is in plain and accessible language, to ensure as many people as possible can better understand why getting the vaccine is so important?Dr. Najera: Yes. And we do it because we have non-English-proficient folks, immigrants, living in our county. Also it's a fact of life that some people don't have an education in or understand biology but they deserve to be as well informed as the rest of the folks. But again, public health is so local. I'm betting good money that a lot of places are going to fall short.TPGA: So accessible information about the vaccine is not necessarily happening at the Federal level?Dr. Najera: Exactly. To be honest, I haven't seen it at the federal level. If I go to the Centers for Disease Control (CDC.gov) website, even I, with my doctoral degree, get a little confused at some of their wording for the recommendations. They have very technical language on their website, and it's the same way with the National Institutes of Health (NIH.gov). And it's the same way with the spokespeople. Most of the spokespeople have doctoral degrees, and they talk in very technical language.Then you have people who never learned biology or chemistry, for reasons that are not necessarily their fault. But they encounter this official information, and they say, "No, it's too complicated. I don't know what you're saying." And then they hear something that they understand a little bit better, and they go with that instead of the accurate information that they don't understand. And then the misinformation sets in.TPGA: Yep. I can't believe we have people railing against a vaccine that combats a highly infectious and deadly disease, yet, here we are. I have a number of questions combatting this misinformation if you're up to that. When people claim that the vaccine has not received any longitudinal studies or that it's being rushed to testing, what is your response?Dr. Najera: You have to remember that the first vaccine was Edward Jenner's, for cowpox, back in 1795. So that gives us 200-plus years of understanding the interaction between a vaccine and the immune system, right?With vaccinations, the first leap was just getting a vaccine, so you didn't have to get the actual infectious disease to become immune. And then the next leap was in attenuating the virus, which means making it less harmful or not harmful at all. That happened with the Rabies vaccine in the 1850s. The next leap was to actually be able to see the viruses, and be able to grow them in the lab. That was in the mid 1900s. The next leap is that you don't have to get the whole virus or bacteria. You just have to get a little piece of it, and that is enough to get you your immune system to protect you.Then the next leap is with genetic technology, where we don't even have to grow anything in the lab. We just have to know the virus's DNA fingerprints. We are able to create little bits and pieces of it in the lab, just the parts that we need for the vaccine. And then now we have this next leap, which is based off of the last one, where we read the genetic material. We got the genetic blueprint for coronavirus in January, and then they went and said, You know what? We don't even have to make this make the little proteins and little bits of the virus in the lab. We can show our own cells in our body, make those little bits, and trigger the immune response. And that is where we are with mRNA (messenger RNA) vaccines.If the COVID-19 vaccines seem rushed, it is because mRNA vaccines haven't been in the public consciousness. But this technology goes back about 20 years, for cancer and HIV and other vaccines. And the COVID-19 virus is actually pretty stable and mutates very slowly compared to flu virus, where we have to have a new vaccine every year, or the HIV virus, which mutates every few hoursThese vaccine trials took about the same amount of time as other vaccine trials. They involved tens of thousands of people, including my wife. And we have the technology to follow up on those thousands of people. The polio field trials in 1954 were in many different cities throughout the US, and the paperwork that went into that had no computers, no social media, no internet, no email. Scientists had to pore over a lot of paperwork to look at the outcomes.With the COVID-19 vaccine trials, you have participants who are hyper-connected. They are given an app to report any symptoms. If they get a positive COVID test, they can look almost immediately and see if the participant was vaccinated with the placebo, or with the vaccine itself. All of these technologies come together.The other example I like to give people is, "Look, in the 1920s they started mass producing cars, and it took several weeks to make one car. Today I can order my car online, and it will be delivered to my house in a matter of hours." As humans, we attach ourselves to the way things should be, based on our experience. And when something like this vaccine technology is new and it's fast and it comes and it doesn't match our experience, we can get scared of it when it is just adapting previous technologies.TPGA: That's a really reassuring explanation, thank you. I'm just grateful this vaccine happened so quickly, because with the polio vaccine you mentioned, my understanding is that it took five years?Dr. Najera: Yeah. The record was the mumps vaccine. That took four years. The polio vaccine was a little bit over five years. And with the HIV vaccine, we've been at it as long as I've been alive, but it hasn't come around because of the challenges of that virus.If you have the time and patience to watch the entire FDA broadcast of the COVID-19 vaccine discussion, the scientists were asking very, very pointed questions about safety and effectiveness. And when you look at all that information, you see that the safety is remarkable. And in the next few weeks and months, we biologists at the local health departments and the academic institutions will be looking at adverse events that get reported, to fine tune what we know even even further, in terms of who gets the vaccine and who should probably not.I like to remind people that health departments and institutions are not just the buildings: There's mothers and fathers and uncles and aunts and brothers and sisters working there. And we have people who we care about, people who are from all walks of life. And we are doing it for them as well. And so we're going to be looking at this matter very closely, and will hold people accountable. Accountability is not just in the courts; it's also in the court of public opinion. And we are doing this and discussing issues with openness, and also we live in an era now that if we notice an issue or shenanigans, we'll put it up on Twitter.Consider that in Great Britain, the same day that they started giving the COVID-19 vaccine, 22 healthcare workers out of thousands developed a kind of allergic reaction. And what happened? They immediately said that everybody who has a history of allergic reactions, please stay off of this vaccine for the time being. Talk to your healthcare provider. If you're at a super high risk of contracting COVID-19, and you meet the criteria about having allergies, let's do the vaccination under the care of your physician.It's going to be the same way here in the U.S. We'll track adverse events from the beginning. And not only with the Vaccine Adverse Event Reporting System, VAERS, which is often misused, and not only with the CDC's Vaccine Safety Datalink, but also with the surveillance systems that we have at the at the local health departments. Also with the state health departments. And also the hundreds of scientists and epidemiologists all talking to each other, formally and informally, and sharing information. It's really remarkable that you have all this technology now coming together to stop a pandemic, and save hundreds of thousands of lives.TPGA: I can't believe that people are scared rather than grateful, but that's the result of these anti-vaccine misinformation networks.Dr. Najera: In the History of Vaccines Project, we have several articles that talk about why anti-vax efforts are nothing new. In the early 1700s, Onesimus, an African slave in Boston, told minister Cotton Mather about giving people smallpox under controlled situations, and people survived smallpox because of this inoculation. And then anti-vaxxers firebombed his house. And after Edward Jenner developed the cowpox vaccine in 1796, there were horrible cartoons about him.I like to remind people that the anti-vaxxers, the people who react this way, people who say these things, they're in the very, very small minority. They are very loud, they like to make a big deal out of things, and they like to pretend like they have an army of followers behind them when they really don't. There are more people who are willing to to listen and to follow the advice of experts. Anti-vaxxers want to make us feel like we're alone. And we're not alone the majority of people are reasonable.TPGA: Yes. My experience in moderating the TPGA community and working in vaccine advocacy for 10 years is that there are definitely more people listening and trying to to understand what's going on with vaccines who are reasonable people, like you said. Then there is this tiny but vocal minority of people who are just so loud. So I think it's important to emphasize what the reality is.But we do need to talk about concerns people have about the COVID-19 vaccines. Can you tell us what allergic reactions look like versus normal side effects?Dr. Najera: Interestingly, after my wife got the COVID-19 vaccine, she felt a little feverish, a little run down; she just didn't feel really well. And that was because of her immune system. When your immune system gets activated, you have to create a lot of new cells to defend you, and those cells are created in your bone marrow, the very center of your bones, and they take up a lot of energy and that means that you're going to get tired. By their nature immune cells take the scorched earth approach, they try to take everything out. And that's what can make you feel sick. Also, obviously, you're getting an injection, so you're going to have pain at the site. It's a needle; it's going to hurt.But these symptoms go away. People will say "I got the flu shot and I got the flu," and you ask them to describe their flu. And it's nothing like the actual flu. They didn't land in the hospital. They didn't stay away from work for two weeks. They weren't getting winded just walking on the hallway. They felt a little feverish for a couple of days, and that's the kind of thing you expect to see, because your immune system is being called into action, right?Some people have no side effects to vaccines because their immune system doesn't take the scorched earth approach, and is more relaxed in how it handles things. And on the other end of the bell curve are people who are going to have more serious reactions because their immune systems are a little bit hyperactive. These are the people who have allergies or they don't even know that they have an allergy, and then they get exposed to something they're allergic to, and then their bodies overreact. That's where you get into the inability to breathe, because their throat is swelling up. Or, the feeling flushed, or dropping of blood pressure, things like that.This is when knowing your medical history is very important. When you get the vaccine, they ask you a number of questions. And people often skip these questions because they think they're like the licensing terms for software. They think, "It's just It's too long; I'm not gonna read this." And that goes back to our whole thing about accessible language, right? But in those questions are things like, "Do you have a food allergy? Have you ever had a vaccine reaction before?"If you have ever had a bad reaction to a vaccine, you need to have a conversation with whoever is giving you the vaccine, be it at the pharmacy or a medical office. You need to tell them that, "Last time I got the flu vaccine, this is what I felt," or "I'm allergic to eggs. I'm allergic to food dyes." You need to have those conversations to prevent those reactions. My guess is that out of the thousands of people in the UK that were getting the vaccine, those few people who had reactions probably didn't know that they had an allergy.I know that the coronavirus is scary, and some people who have food allergies will want to get the vaccine because they feel like the virus is some ways worse than their allergies. But at the same time, allergies can get really bad if they're not careful. And so they need to have a conversation with a healthcare provider to be sure that they're they're going to be okay getting this vaccine,TPGA: People in the autism and developmental disabilities community are more likely to hace co-occurring conditions, like Mast Cell Activation (MCA). Is that something that to be aware of, for getting the vaccine?Dr. Najera: That is something where you'd say, "Let me talk to my health care provider." And consider that we are several days into the UK vaccinations, and now that data is being looked at. So statistically you're probably going to start seeing people with these kinds of medical histories, and people will be looking closer at how they come out of the vaccine. I can't give you a certain answer, but it's a subject for discussion with a health care provider that knows your medical history.I try to remind people that if they have a medical condition and a vaccine concern, they really need to talk about it with a healthcare provider. They don't want to talk about it with random people on the Internet. They want to go to the subject matter experts. We live in an era where telemedicine is a thing. And I know that healthcare health access is still a big problem in the U.S., but I at least want to get ahold of a healthcare provider. If I go to the pharmacy, I can ask the pharmacist. I just want to double-check with somebody who knows a little bit more than the random person on the Internet. If people did that, we would be so much better off in so many ways. That's another avenue that we are working towards correcting.TPGA: Yeah, We definitely have to remind people in our TPGA Facebook page that we are not vaccine experts, and they need to talk to their medical providers.Dr. Najera: I had a person email the History of Vaccines project with a personal medical question. I replied, "You're better off talking to your health provider." And they shot back with a lot of mean language of, "Well, you're a doctor in public health, you should know better." But no, I'm not a physician, and you're asking a very personal question and I have no access to your medical history. And even if I did, again, I'm not a physician. You know that, that kind of thing. It's understandable; we are in uncertain times, and people are looking for confirmation.TPGA: But it's interesting to me because they're asking an expert for a question, and the expert says "I'm actually not that kind of expert. Please go to another expert."Dr. Najera: And that makes them upset. I know. Like my grandmother used to say, "Every head is its own world." Every person that I encounter is different. For instance, the anti-vaccine people. I used to lump them all together, but I've learned in the last 13, 14 years of dealing with them that some are skeptics because they have healthy skepticism, some are cynical people, and then there are the people you can't reason with and I kind of just let them go their own way.TPGA: Exactly.Can you tell me, how does this vaccine compare to other vaccines that we know to be safe?Dr. Najera: Sure. For example in 1976, a new flu virus came out of Fort Dix in New Jersey. A soldier got sick, they did a swab, and when they took it to the lab, they discovered it was a novel flu virus, a swine flu strain. And the CDC and the World Health Organization got scared, because a pandemic could begin from that one outbreak. President Ford signed into law a lot of money to be given to scientists to develop a flu vaccine immediately. Then when they were giving the vaccine out, they noticed that about 2 to 3 people in a hundred thousand were getting a very severe auto-immune disease called Guillain-Barre syndrome.What they didn't know, because there was no surveillance system and no systematic collection of data for Guillain-Barre, is that this disease occurs at 2 to 3 per hundred thousand in the general population. Which is rare. But because they were paying close attention to the vaccine, they noticed Guillain-Barre as well and when they backed off of the vaccine, they stopped it early. Thankfully, no pandemic ever materialized.And this vaccine became known as a fiasco that gave so many people Guillain-Barre. But later on in the 1980s and 1990s, the public health people started looking at the literature, and we realized, "Hey, that's actually the background rate for Guillain-Barre." So the vaccine is actually safe, and it wasn't the vaccine. The vaccine might have triggered it, but the flu would also have triggered it.For the COVID-19 vaccine, 72,000 people were in the Pfizer trials and 36,000 or so were in the Moderna trials. That's a lot of people. And they might not detect the one in a million reactions, but you will detect more things that are more one in one thousand.Also, in the Pfizer placebo group, they saw eight deaths not immediately, but in the weeks after the vaccine. And in the group that got the vaccine, they had two deaths. So does that mean that not getting the vaccine is four times as deadly as getting the vaccine? Well, no. These were expected background rates of death, because the participants were people who were advanced in age, and so they actually died of natural causes. One I think it was an accident.And so, compared to those to other vaccines, and taking into account the background rate of things that happened, these new vaccines are very safe. There hasn't been a point where we gave you the vaccine and within hours, they were dead, and then we did an autopsy and and research, and we found that it was the vaccine component that did it. There hasn't been anything like that.At this level they've already gone through the initial phase of trials in animal models and in computer models and experiments. They already gave it to a few dozen volunteers who were checked daily, in person, for any kind of adverse reactions. And then they were given to a one hundred people to check for immune reactions. And then phase three of the process had thousands of people tested for safety, immune reaction, and protection of the vaccine against the virus. So it's a lot of steps.Are we going to see one in a million reactions? Once we start hitting a million people getting vaccinated, probably. And then that's where we fine tune again. And that's another thing I think people don't take into account: that vaccines do get fine tuned.Also, everybody seems to think that we want to give a vaccine to everybody. No, no, no. We want to give the vaccine to everybody who can get it. And that provides herd immunity, which helps protect the people who cannot have vaccines.TPGA: Can you also address why this vaccine is not going to mutate our DNA, even though it's an mRNA vaccine?Dr. Najera: The reason why the COVID-19 vaccine is not going to mutate the DNA is because it never makes it into the nucleus of the cell. That's it. And again, people will say, "I never paid attention in biology class. So I'm not gonna know these things." But they hear DNA, RNA, and think, "Oh, there's gonna be some genetic interaction there." There isn't.When people eat meat, they eat a lot of mRNA. And our bodies are great at not letting the mRNA from other cells do anything to our cells. Andwith this vaccine, you're giving the mRNA in a shot. It goes into the cells, but not the nucleus of the cells, because the cell would rather die before letting anything into the nucleus. And that's actually what happens when you get a viral infection: Viruses do get all the way into your DNA on some of the viruses. They do that, and they kill the cells. And that's why you have injuries to tissues themselves.So the mRNA gets into your cell and it finds these little, little things called ribosomes. They put together proteins, and can make the protein that looks a lot like the virus protein. And then those virus proteins go out and your other cells pick them up, and they begin to make antibodies but it never gets into the nucleus. It doesn't change your DNA because that's not how it works.Viruses themselves can change your DNA, like the human papillomavirus (HPV). That virus goes into cells, like in the cervix in women. It makes the cells multiply, and that's how it creates cancer cells. That's the danger. The HPV vaccine prevents cancer. That's the kind of thing that I remind people of: Look, the COVID-19 vaccine will not get into the cell nucleus, But you know what does? HPV, and we have a vaccine for that, too.TPGA: Great. Thank you so much. Can you tell me why is it significant that this is not a live vaccine?Dr. Najera: Good question. If you have a live vaccine, you have to find a way to grow it in the lab. And when the pandemic started, I emailed Dr. Paul Offit, and said, "Hey, it's gonna be hard to make a vaccine because it's hard to grow the coronavirus in the lab, correct?" And he replied, "Yes, correct." With this vaccine, we don't need to grow it in the lab. We have just the genetic code, and that's enough to make the vaccine.The other thing is, if you don't have a live vaccine you don't expose laboratory workers or people who are manufacturing the vaccine. You're not exposing them to the virus either. You don't have lab accidents like we used to do with smallpox. When you're handling a virus that doesn't have a known cure, treatment, or vaccine, you have to set up what's called a Biosafety Level Four lab, and there's only three or four of those in the U.S. We don't need to use those labs for this vaccine. All we need to do is put the virus in the machine that reads the genetic code and tells us what that code is, and then we go to another machine and say, "Hey, make me some mRNA with this code," and then package it up, and you're good to go. That's a very simplistic way of putting it, but that's where the safety comes in.Then the other thing is the immune response. If you were giving somebody a live virus vaccine, even though it's attenuated, the reaction or the chance of a severe reaction is higher, because your immune system has to react to an actual invader instead of just getting prepared for a little protein.TPGA: That's super helpful. Can you talk about why prioritizing people at the highest risk is not the same as experimenting on them?Dr. Najera: The COVID-19 guinea pigs were actually the first five or ten people who got the vaccine way back when, to see if the components were safe. I would dare to say that maybe my wife was a "guinea pig," even though she was part of tens of thousands of participants.Prioritization happens because we have a very deadly virus that is killing people in a group. And we have a vaccine that has been shown to be safe. Ethically, you have to give it to that group. You have to prevent disease. Even if it were an experiment, knowing what we know, it's still an ethical experiment because you're preventing something that is deadly with something that is known to be safe. If we had no idea of the safety of the vaccine, then the ethics get a little hazy: is it as bad as the virus, or worse? If we didn't know that, we wouldn't be able to do this. But we do know that, and so we're able to be ethical about it.And that's the other thing. When I was telling you earlier that health departments are not just buildings, they are people, I mean that we all took an oath to protect public health, and we take that oath very seriously. People who don't take it seriously are not working in public health anymore. Those of us who take it seriously, we do this work out of caring for communities and our families, and and and wanting to stop things like this disease.TPGA: We also have encountered wariness from the Black community about the COVID-19 vaccine, based on that community's history of mistreatment by the medical establishment. How are you and other public health workers addressing these types of concerns?Dr. Najera: When we have discussions about anything like this vaccine with the African American community, they bring up the Tuskegee Trials. The issue there was that they had African-American people who had syphilis, and the scientists didn't do anything about it. They just let the disease run its normal course. And this was in an era when antibiotics were available to cure it. If it had been 300 years earlier, when there were no antibiotics, and there was nothing to do, they might as well observe it and see how it goes. But at this point in history, they already knew that antibiotics worked. They already had plenty of cases of syphilis, and they knew how it behaved. For some reason, they thought it was okay to do this, and it was probably born out of institutional and personal racism.The story of Henrietta Lacks is another one that resonates with the African American community. She was a woman who died of cervical cancer. Her cells were used for medical advancement, but there was no justice in it neither she nor her family got to benefit from her sacrifice. You see this over and over again. In the Latin American community, we have the contraceptive pill experiments in Puerto Rico. The Army also bombed Vieques Island there, sometimes with chemical weapons. You have companies that went down to Central America in the 1970s and 1980s to do clinical trials for their medications. And then and then they left the people without the medication when it was proven to work, or so expensive that they weren't able to afford it.And if we're talking about justice, you also have people who are fleeing their own governments or have been abused by governments. And then the U.S. Public health system is run by governments, and so naturally they mistrust it.Going back to the question from the African American community, having doubts is understandable. My best reply is that we have gone very, very far in ethics, and in ensuring ethical treatment of people. We're not perfect, but it's much, much better than it used to be. Many of the researchers are African American. They don't only speak the language of the people that they are trying to help. They also speak the language of the experience of the people that they are trying to help. They come out of underserved communities, they go into scientific fields, and they help to do this.Myself, I was born and raised in a very poor part of Mexico, and migrated to the United States when I was ten. And here I am: Doctor of public health. Helping with this vaccine effort and the pandemic, and explaining things. So I have an interest as well in promoting the justice of this vaccine, and in the ethics, and in making sure that the distribution, prioritization, etcetera are ethical.And so that is my best answer: it's very hard to get over what is centuries of mistreatment and injustice. And I completely understand that, I will never have any judgment against people who are skeptical, or even cynical to be honest, of vaccines because of that history.But at the same time, my mission is to inform them and say, "Look, I understand this is what happened. And this is where we are now. We've come a long way. We still have a long way to go. But we can make strides." And just one is that we recognize that minority communities have been hit very hard by COVID-19, and so they are being prioritized to receive this vaccine.TPGA: Does a COVID-19 vaccine mean that we can stop wearing masks and washing your hands?Dr. Najera: No, no, no. And the reason is because the vaccine is not perfect. It has 95% efficacy, which is how it performs under controlled conditions. It's probably going to have a very high effectiveness, which is how it performs once it goes out into the communities. But that is going to depend on who takes it and who doesn't. For example, The MMR vaccine is very highly efficacious, at 98%. But it's not very effective in the anti-vaccine community. Because it's not perfect, and because not everybody's going to take it because it's going to take a while for immunity to develop, we're going to have to wear masks for a while. We're gonna have to wash our hands, and we're gonna have to be careful for a little while.I think at the local level, when we start seeing herd immunity kick in, community immunity, then we'll probably start easing those restrictions.TPGA: The main thing people seem to want to know is when can we get back to "normal"?Dr. Najera: My best guess is the fall of 2021. And that is if everything goes according to plan. But we're going to have a U.S. administration that is pro science and pro-evidence, and so that'll help. We're going to have a partnership and by "we" I mean "We the people" with UPS, FedEx, the U. S. Postal service, the military, the police. Everybody's going to get involved in distributing this vaccine throughout the whole country. We have the ethics committees, the ACIP, and everybody recommending priority groups, and that will cut down on infection rates. And if we can get all this done in the next nine months, then you're looking at the holiday season of next year (2021) with remarkably less restrictions. But it's going to take all of that put together. So I'm hopeful. I'm hopeful.My best guess is it's gonna be late next year when we all finally get to take off the mask and go back to a new normal. It's not going to be the old normal I think that movie theaters are done, and a lot of restaurants are going to be done. But in 1919 after the Spanish Flu pandemic, a lot of things changed, and that was the new normal. And now we're going to go into our new normal.I do hope that the incoming administration reinstates the CDC surveillance systems around the world, which were cut and killed under the Trump administration. Those systems would have given us a warning about COVID-19 as early as September of last year. Those three-four months, those were critical. SARS in 2002-2003 and MRSA in 2011-2012 did not become pandemics because the first few cases were identified and acted upon so early that it just stopped everything. Those were coronaviruses just like COVID-19, but they didn't become pandemics. But the current administration, unfortunately, came in and killed a lot of our institutional knowledge, and we were left defenseless. And this is where we are.TPGA: So infuriating.Dr. Najera: Yeah, it is.TPGA: I really, really appreciate your time. Is there anything else you wanted to add that I haven't asked about?Dr. Najera: I'd like people to be very mindful that people with intellectual disabilities, or who are non-speaking, know that something's going on with this pandemic, because they feel the stress, they see the stress. I'd want to transmit my hope about this vaccine to them.TPGA: That's wonderful. It's a really great way to end it. So thank you, René. Again. So grateful.-----René Najera, MPH, DrPH, was born and raised in Mexico. He immigrated to the United States at the age of ten and graduated from the University of Texas at El Paso with a degree in medical technology. He holds a master s in public health and biostatistics from George Washington University and a doctorate in public health from Johns Hopkins University. He is currently the editor of the History of Vaccines Project from the College of Physicians of Philadelphia, an associate in the Department of Epidemiology at JHU, an adjunct at George Mason University and a senior epidemiologist at a county health department in northern Virginia. He is the father of a three year old and husband to a physician assistant.We Asked An Epidemiologist: COVID-19 Vaccine Myths and Facts2020-12-15T17:22:00-08:00Shannon Des Roches RosaCovid-19|Disability|Dr. Rene Najera|public health|vaccines|vaccines work|CommentsDo you appreciate TPGA? Consider making a donation to help us pay our writers. Thank you.paypal.me/TPGA Myers-Rosa Foundation. Awesome Inc. theme. Powered by Blogger.

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