Recent public statements by federal sources and “influencer” culture have contributed to confusion and fear around vaccines and Tylenol use during pregnancy. Local experts and advocates came together for a virtual discussion of these statements about autism. You can watch the entire event above, or read a transcript below, and learn how you can make informed decisions based on science and lived experience, not speculation.
The panelists, guided by BTPM Disabilities Beat Reporter Emyle Watkins, explored the evidence behind claims linking Tylenol and vaccines to autism, and how such claims may have undermined health professional and advocacy efforts. Whether you're a parent, healthcare provider, educator, or an interested member of the public, you can learn tools to navigate these complex health narratives and support informed decision-making.
TRANSCRIPT
This is a rush transcript created by a contractor. It may be updated over time to be more accurate.
Tom Calderone: I'm president and CEO of Buffalo Toronto Public Media, and we're honored tonight to have this panel. And at this moment in time with Erie County. I want to tell you first off what I look like for those that are visually impaired. I am about five foot four. I'm wearing a black blazer, black slacks and black shoes, and I have a blue t-shirt underneath my sweater. I want to talk a lot tonight about why we are here. Public media is here to tell the story of the underserved communities, to give voice to the voiceless and to cut through the clutter with meaningful conversation. Not yelling, not screaming, not pontificating about personal thoughts, but finding a path so you have understanding so when you leave this YouTube stream, you'll be a better informed citizen about the topic of autism that we're going to talk about this evening.
I also think it's very important to know that through PBS, we have a little animated character on our stage named Carl the Collector. It's an animated series that is produced, written and voiced by people on the spectrum, people with autism, and that's a very important moment for us, particularly partnering with PBS on a series like this because again, it's giving storytelling to the voiceless. So tonight you're going to learn some things, hopefully you'll have a couple of aha moments, but more importantly, how do you move forward better as a public media consumer to make the world a better place? And that's why we're here tonight. So we want to thank again Erie County for allowing us to host this. Thank you to all of our panelists. And we're going to toss it now to Emily Watkins, our disability reporter at Buffalo Toronto Public Media's NPR station, who's going to kick it off with us. Emily, it's all yours.
Emyle Watkins: Thank you so much, Tom. I really appreciate that. Hi, I'm Emily Watkins. I'm BTPM NPR's disability reporter. I'm disabled and neurodivergent myself, so it's a great honor to moderate this discussion tonight and to be a part of this public media organization that has shown so much support for the disability community and the neurodivergent community. And I'm so excited to introduce you to all of our guests in just a moment. But first, I want to welcome Dr. Gale Burstein, the commissioner for the Erie County Department of Health, to just tell us a little bit more about what we're going to talk about tonight.
Dr. Gale Burstein: Thank you. Well, first I'm going to start off with giving a visual description of myself. So I'm a white woman. I have a short, dirty blonde, curly hair. I'm wearing glasses, a rust-colored sweater, a plaid skirt, a mustard colored tights and loafers. So I just want to start off to frame this to we just have to take a pause and remember that science is dynamic, it's not set in stone, and it's always changing and it's based on new data, new discoveries, new evidence, and new facts. And so we're constantly revisiting what we know and what science tells us. And what it does is it shapes our economy, our culture, our history, and our health. Also, our experiences are not set in stone. They're dynamic. We're always having new experiences and how the experiences world is really shaped on our relationships, our personalities, our environment, and also our health.
So unfortunately in the recent climate, there's just been a lot of misinformation and myths that have just really blossomed. And a lot of this misinformation has been around vaccines and autism and pregnancy, and it's really caused a lot of confusion and fear among pregnant people and parents and just in the general community, and people fear what they don't understand. So what we're going to be doing tonight is presenting scientific information to help people understand these issues around autism and vaccine and Tylenol during pregnancy and everything else. So your job tonight, Emily, your mission if you choose to accept it, is you're our moderator and you're going to walk us through these questions to examine what is the scientific evidence that we understand and how messages through the media and has really shaped our understanding and perceptions around vaccine and autism, what we do around medicine and pregnancy. And so you're also going to give us some practical tools that people can use, and then we have that and so much more in the next 90 minutes.
Emyle Watkins: Great, thank you so much, Dr. Burstein. And I think it's so vital that we're having this conversation at this moment. And before I speak too much, I do also want to give a visual description of myself. I am a white person with medium-length brown hair. I'm wearing purple glasses, a black sweater, black blouse, a silver necklace, and brown pants. And I am also disabled in neurodivergent as I mentioned before. And something I really want to highlight is this panel is such a great combination of both experts in the medical field and the autism field and people with lived experience because lived experience is its own expertise. And as a reporter, I've seen how challenging and confusing this time has been. As Dr. Burstein mentions, it's hard with all the information out there to sort through these facts. I do that as a job and I find it tough.
And I also think that as a neurodivergent person, it's been hard in my own life finding the right resources, sorting through the noise, and even with my background, it's been a battle. So I'm really excited to moderate this tonight. I'm really excited to break down some of these topics. And before I introduce the of the panelists, I'd love to just go through a few questions with you, Dr. Burstein, to kind of help guide this conversation, lay some framework. And I know a few weeks ago when you first mentioned this event to me, it sounded like Erie County really wanted to get on top of this issue. Why is it so important to address misinformation in a setting like this?
Dr. Gale Burstein: Well, it wasn't just our department that wanted to put us together. Actually, Pastor Nicholas from the Buffalo Center for Health Equity called me a couple months ago and he was also very concerned about all this misinformation about autism. And he said, "Let's do something about this." But I thought, "This is really big. We have to bring in other people to help us. This has to be a big team effort." So from the health department, I pulled in our Office of Health Equity, from the county I also pulled in our Office for People with Disabilities. I pulled in my medical colleagues that we're going to hear from tonight, and then some champions of people from the autism community. And then of course, you all from BTPM have really been able to help us bring this together and broadcast this here live tonight. And there are also been a lot of people in the background helping out too, that you don't see here. But this has really been a big huge team effort because this is such an important topic.
Emyle Watkins: Absolutely. And as a leader in local public health, what are the most common misconceptions about autism that you've encountered?
Dr. Gale Burstein: Well, there's really been a continuum of misinformation about autism, just like there's always a continuum about misinformation about every medical topic. But the problem is that the misinformation and the myths around autisms and vaccines have been really stuck and they stuck because they sound like they could be real. However, they're very confusing and they've caused a lot of fear and destruction, and some people are afraid to get vaccines. And that's very destructive because vaccines save lives. And so what we're going to do here tonight is, again, talk about the medical evidence. We have some great medical experts here on all those topics and they're going to help walk us through this.
Emyle Watkins: And lastly, just because I know this is a key difference that will come up in the next 90 minutes, what is the difference between correlation and causation and why does it matter?
Dr. Gale Burstein: Well, these are scientific concepts that we use all the time in public health, and actually we all use all the time in our life. So correlation means that two concepts are related either in time or by location. And causation means that one factor actually causes another factor to happen. So an example can be the number of sunburn cases and ice cream sales. So we both know that those increase in the summer. However, I think we all feel pretty confident that sunburns don't cause increase in ice cream sales and that ice cream does not cause an increase in number of sunburn cases. However, they both increase in the summer and when there's a lot of intense sun. So they're related to each other, they're correlated, but one does not cause the other. If that makes sense.
Emyle Watkins: That does make sense. That's such a great way of understanding it. And thank you so much for helping kick this off with me, and I'm really delighted now to bring in our panel of experts. I am going to introduce each speaker and then have them share a brief visual description. I also want to acknowledge that we have two American sign language interpreters from People Inc.'s Deaf Access Services, which includes Cindy Neuroth-Gimbone and Clara Rich. And they are in the corner of your screen. Both of them are wearing all black. One woman, Cindy is a middle-aged white woman with silver hair and black glasses. And Clara is a younger white woman with blonde hair. Thank you both so much for being here tonight and for helping make this accessible.
And first on our panel, I want to introduce Dr. Stephen Anderson, the former CEO of the Summit Center, which he has led or led for nearly 30 years. He's known for solidifying the Summit Center's focus on autism and leading the Center's growth from one program to over 30. He also helped develop the clinical practice guidelines on autism for the New York State Department of Health. And he holds a PhD in Developmental and Child Psychology. Dr. Anderson.
Dr. Stephen Anderson: Thank you, Emily. I'm a white male. I'm wearing a blue blazer with a blue shirt, gray pants and black shoes. I have glasses. And I refer to my hair as gray, but I said that recently in the presence of my granddaughter and she said, "It's not gray, it's white." So white hair, I guess.
Emyle Watkins: Okay, cool. We love how everybody self-identifies. And next I want to introduce someone who really emphasizes the importance of person-centered autism care and self-advocates are a huge part of person-centered care. The self-advocacy movement focuses on people with disabilities leading and teaching other people with disabilities, the tools, resources, and skills needed to thrive. And for self-determination. We're lucky to have Hannah Brecher with us who is not only a vocal self-advocate, but a peer mentor to others. She's known for her advocacy and development of plain language resources, which help make information more accessible to all.
Hannah Brecher: Thank you, Emily, so much. For those of you who are visually and low vision, I am a plus size, heavy set woman with dark, curly hair, cheetah glasses, black pants, a purple top, and a Mary Jane style shoe with white socks.
Emyle Watkins: Great, thank you so much Hannah. And our next panelist, David Herring, PhD, is a psychology professor and the current program development and evaluation director for the Neurodiversity Network of Western New York. Like Hannah, David brings both professional and personal experience to this panel. David studied social cognitive neuroscience and holds a doctorate in psychology from the University of Texas at El Paso. He also proudly identifies as disabled and neurodivergent and is raising an autistic child. David.
David Herring: Hey, y'all. I am a white man with a short, dirty blonde hair. I'm wearing a black t-shirt, black blazer, blue jeans, and black shoes.
Emyle Watkins: Fantastic. Thank you, David. And everyone on this panel seems to have multiple expertise and Dr. Michelle Hartley-McAndrew is no different. She's dual board certified in pediatrics and neurology with special qualification in child neurology. Dr. Hartley-McAndrew treats children with autism and is the medical director of the Robert Warner Center for Developmental Pediatrics and Rehabilitation at Oishei Children's Hospital. She's also a pediatric developmental health expert and clinical associate professor of pediatrics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo.
Dr. Michelle Hartley-McAndrew: Thank you, Emily. So I am a white woman in her early 50s. I have blonde hair pulled back into a bun. I'm wearing black colored glasses, I have navy blue pants, a lighter blue top, a sort of beige colored cardigan and navy blue shoes.
Emyle Watkins: Fantastic. Thank you so much. And next is Dr. Mark Hicar, MD, PhD. He's a physician scientist and expert in pediatric vaccination and pediatric infectious disease. He's an Associate Professor of Pediatrics at the UB Jacobs School of Medicine. Buffalo Spree magazine has previously named him one of Western New York's top doctors. And in 2022, Hicar also penned a book chapter focused on vaccine hesitancy. Dr. Hicar, thanks for joining us.
Dr. Mark Hicar: Hi. Thank you for having me. I'm also in my mid-50s six foot one male. I have short cropped, almost buzzed haircut with a glowing white goatee. I'm wearing a brown blazer and jeans. Remarkably good-looking. Why is everyone laughing? Don't tell them. All right, that's it.
Emyle Watkins: Hey, we left it up to y'all to describe yourselves and we love the confidence. We want to bring the confidence. And we are also lucky to have with us one of Western New York's leaders in maternal health, Dr. J'Leise Sosa. Dr. Sosa is the medical director of the John R. Oishei Children's Hospitals OB-GYN centers. Dr. Sosa is also board certified OB-GYN who has served on the American College of Obstetrics and Gynecologies and may have just said that wrong and I apologize Safe Motherhood Initiative and the New York State Governor's Task Force on Maternal health Dr. Sosa obtained both her medical degree and Master's of Public Health from St. George's University. Dr. Sosa.
Dr. J'Leise Sosa: Thanks for having me, Emily. I am an African American female who won't tell you her age with shoulder-length black hair wearing an ivory suit.
Emyle Watkins: Great. Thank you so much. And last, but never least, is a nationally recognized advocate for health equity Pastor George Nicholas. Pastor Nicholas is the CEO of the Buffalo Center for Health Equity and a founding member of the African American Health Equity Task Force. Pastor Nicholas' work has focused on racial and geographic and economic issues of health equity, primarily in Buffalo's zip codes most impacted by the results of racial segregation. Pastor Nicholas, thank you so much for your work and for joining us.
Pastor George Nicholas: Thank you, Emily. I am an African American male, early 60s, clean-shaven. I have a bluish blazer, blue tie, no, a blue shirt with a gold tie and glasses. And I'm just so grateful to be here.
Emyle Watkins: Great. Thank you all so much. And as a reporter who covers disability, we want to make sure this event is not only accessible, but also recognizes the myriad of experiences of people with disabilities. In my nearly five years of covering disability, I've learned that there is a variety of language used to describe people with disabilities and different people have different preferences. For instance, some people may say they are a person with a disability because they prefer their personhood to be recognized first. That is called person first language. On the other hand, some people prefer to say they are a disabled person because it reflects that their identity is not something that they can separate from themselves. And that's just like race, gender, sexuality. For example, I prefer to be called a disabled and neurodivergent journalist because I can't separate my identity from my experience or my work and that's called identity first language.
I will primarily refer to the autistic community in an identity first way because from my research, that is often the preference of many autistic adults and advocates. But as we move through this panel, I want to encourage everyone to use the words disability and autism directly rather than euphemisms and respect that people may have differences in preference of language. And for our first question, David and Hannah, I'm wondering if you could both briefly share a little bit about language and autonomy of choice in language and just why is this so important to the autistic community? David.
Hannah Brecher: David first.
David Herring: Yeah, sure. I think for, like you said, Emily, for many autistic persons, using identity first language kind of akin to how we see, for example, folks in the deaf community use it is very important to them. I get the differing viewpoints as you pointed out. I think there's a tendency for many parents of children who are autistic, many allies, many providers to use that sort of language. And I hear that. No one wants folks around the autistic youngster to just rely on a label, "Oh, you mean the autistic kid?" I guess for me, I tend to align with a lot of people in the autistic community in that I feel that identity first language, there's a certain level of pride that comes with that. I think there's just really no separating the autism away from the person. I think with person first language, in some ways I feel like it does perpetuate still a sort of negativity by just separating out the autism.
I know it comes with good intentions. I think people who use it certainly have good intentions. I think there's also just kind of the oddity in that. Am I a person with whiteness or a white boy? Am I a person with heterosexuality or am I heterosexual? But at the end of the day, I think we should honor folks' choices, their preferences. And I think if people are in a position where they have to refer to someone who's autistic... I mean, there's always a third option, using neutral. So if you find yourself in a position having to talk about, say, an autistic child, and you don't know what the family preference is, you could just say a member of the autism spectrum, for instance.
Emyle Watkins: Absolutely. Thank you, David. I think that was a fantastic way of explaining that. And Hannah, I'm wondering if you could dive in a little bit more on why it's so important for people to have autonomy in deciding how they're described.
Hannah Brecher: Definitely. For me as a self-advocate, we use person first language for agency purposes. I just want to make that clear, because agencies go back to earlier vocabulary, back when the '60s and '70s when they were using different other languages and medical languages to say who we are. But I love to say I'm autistic. I love to say that I am disabled because there's a certain authenticity and there's a certain realness behind it, because I can't hide who I am. It's going to come out one way or the other. And I feel like with so many labels, I feel like it makes us feel a little bit, I want to say the word different in a sense, because it feels like I don't know what to be and you're stuck in this box. Am I disabled? Am I autistic? It's like it's putting something... I'm just a person. That's all I am.
Emyle Watkins: Absolutely. And I really appreciate that spectrum of opinions and ideas around language. And I just want to open this conversation up because I think that's something that gets left out so much when we talk about autism is it suddenly becomes this debate over what are we calling people? Or it becomes, "You're right, I'm wrong." Like you both mentioned. I also know there's terms out there that are rather negative as well. And David, I wanted to ask you too, I know your son has autism and ADHD, which many people now refer to as A-U-D-H-D.
David Herring: AuDHD.
Emyle Watkins: AuDHD, which is with the little U in the middle. But a lot of people use the term neurodivergent. I identify as neurodivergent because I have multiple conditions that fall in the realm of different brain functioning, which is kind of how we describe neurodiversity and being neurodivergent. I want you to just talk a little bit about that term, especially because you are part of the Neurodiversity Network. What is the neurodiversity movement?
David Herring: Yes. So I think there's an important distinction between the neurodiversity approach and the movement. The movement, it relates to really social and political issues. The neurodiversity approach I think is, it's really the way I think about it, it's a different lens. And oftentimes the neurodiverse-
David Herring: ... lens. And oftentimes the neurodiversity approach, folks will pit it against, say, a medical model, for example. And I guess the position I take is that they don't have to be antagonistic. I see them as different lenses. The neurodiversity approach, it really boils down to just the recognition that human brains and therefore minds have infinite variability.
And so I think with that lens, which tends to be kind of more of a strength-based approach, that when we recognize all the variability in membranes and minds, I think that can be very empowering for people. And so it's really just a neurological difference. And so when people use the word neurodivergent, they're referring to someone, traditionally it's been thought of as conditions that are neurodevelopmental in nature like autism, but also ADHD, Tourette's, for example, dyslexia, dyscalculia, dysgraphia for instance.
So neurodivergence is someone who does not have a typically developed nervous system. And so really, again, it's a different lens. It doesn't have to be viewed in opposition of a medical lens. And so yeah, I think it's really just encouraging kind of reimagining and thinking about these conditions in alternative ways that I think many people find empowering, a lot of pride in that way.
Emyle Watkins: Absolutely. Thank you so much for sharing that. And in a moment, I'm going to have our experts talk a little bit more about diagnosis and causes of autism because I know that's something people are really trying to understand in this moment, and there's been a lot of confusion about. But since we have people who have lived it and have that lived experience, I want to give both Hannah and David a chance to talk a little bit about the diagnostic process for your family and what coming to terms with the diagnosis looked like for you or for your family.
Hannah Brecher: Definitely. So for me, I actually have a learning disability first. I have MPLD, which is nonverbal learning disorder. I was born with that. And I will say I actually use one of our sources up here on the stage. I actually went to the Robert Warner Center twice a week for a year.
And I have to say to the Robert Warner Center, I would not be here today if it wasn't for them. They definitely saved my life because look at me now. I'm a self-advocate for now eight years, and speaking my mind, but the diagnose process, my mom learned very early on that I had autism, but she didn't want to say anything to my family members right away because there is such a... In the disability community, there's such a thing as the mourning period, which a lot of families kind of mourn the child, and it's kind of a bleak process, but I feel like that process, it doesn't matter if you're mourning somebody or not, you're learning about that new person.
You're learning about their love and their support that you're going to need. For me, I got diagnosed, properly diagnosed by a psychiatrist who's no longer in practice, but he was amazing. And it was during my junior year of high school and I was 18 years old, and I remember this so vividly in my head.
I was coming out of the psychiatrist office and I was going to the car with my mother, and I told her, I said, "Mom, I don't know how the heck am I going to..." Because I developed such a good relationship with all my cousins and my aunts and my uncles. What am I going to say to them? How am I going to process all this information? And she said, "I'll let you do it on your own terms. You'll handle your cousins. I'll tell the others and we could do it together." And yeah.
Emyle Watkins: Hannah, I don't mean to jump in. And David, I want to hear about your family as well, but that just really strikes me because I wonder, do you think part of that grieving and mourning is also dealing with those misconceptions and those stereotypes of autism? Because I think that's a really hard thing when you find out you're neurodivergent, and then you're like, "What are people going to think of me?" Is that part of the mourning process?
Hannah Brecher: It's basically mourning... I know everybody says this, this is cliche, but everybody wants a perfect child. I mean, there is no such thing as a perfect child. And I think that everybody has this stigma inside their head that, yes, every child is beautiful, every child is in their, quote, perfect. But it's not. People are going to make mistakes. And I think, I hate the wording of it, which is the mourning period, because I just, it makes my skin crawl every single time thinking about, but it's like, I am just perfect the way I am.
Emyle Watkins: Yes, you are. I think that's so huge, because I think that especially from reading about and researching the early days of media around autism, I have a friend who wrote a phenomenal book about autism, Eric Garcia, and he talks a lot about how early campaigns around autism education focused on autism's lurking in your closet, autism's lurking in your child's bedroom, autism's in your backyard waiting to strike, as if autism is this dark, scary thing when it's not.
Because many people with autism, many of us live very full lives and by looking at us, you'd never know. And David, I want to go into your personal experience as well, because you have, I don't want to say a unique experience because I think it's more common than people think, of being both a parent who identifies as neurodivergent while having a child who's neurodivergent.
David Herring: Yeah. So my mother was a neurodivergent. She had pretty, let's just say she was high in the OCD spectrum. She had a great level of needs related to that. So I think given my family history, and I think given recent years where I, just in talking about that internalized stigma, I think the last few years I've done a lot of work on myself, I mean, I basically sat on an ADHD neuropsych eval for years just kind of setting it aside.
And so I think because... And then had another one, which was really emphasized again, I think the last few years and just coming to understand my own neurodivergence has really allowed my wife and I to be very deliberate. I was not sure with Max, I mean, it was very clear he was hyper like I was when I was a child, I saw a lot of things that look a lot more than ADHD with autism.
So I wasn't really sure what the diagnostic outcome would be, but I think my wife and I... Love you, honey. I think that we've just been very deliberate about celebrating it. I was not affirmed growing up. I was an undiagnosed very hyper, very talkative kid. And so I want my son, Max, I know you're watching, to know that mama and papa love you. You're perfect and beautiful the way you are.
We need brains like yours. Now, inform mama, which of the flags hanging up in the living room, which has a Nordic cross red background, white stripes, tell her which country that is? I love you too, Izzy.
Emyle Watkins: I love that so much. And I think that's so important, what you're doing, is I think that especially when a lot of us who are sitting here were growing up, these diagnoses were much more misunderstood and there's a lot more stigma around it than today. And I went through the same thing, especially being an ADHD kid. My parents were told she probably has ADHD, but she'll grow out of it. Just give it time. And I wish I would've had the resources and the medication I have now much sooner. It would've made a huge difference in my life.
David Herring: Well, especially I think we're closing the gap with the gender kind of bias and making those assessments with ADHD and other forms of neurodivergence too.
Emyle Watkins: Absolutely. And that's something I want to dig into a little bit more in a minute. I really want to bring into the conversation now, Dr. Anderson, who has worked with so many children with autism over his nearly 30-year career at the Summit Center. I really want to dive into what does that diagnostic process look like now and what are some signs that someone could be autistic? How do we define autism now?
Dr. Stephen Anderson: Well, let's maybe start with probably what parents see at a pretty early age if the child's on the spectrum, and there are certainly different levels as we know of autism, but they're probably going to see that their child doesn't vocalize at an age or have words at an age that most other children do. But if they do have words, they don't function to socialize much with others, and they're almost detached from the socialization piece, their language and socialization are almost like separate pieces. Then they may not engage much with normal family activities, with other children in the family. And parents may notice this, and if they haven't had children before, they may, for the most part, dismiss it as they go along, thinking he's a slow developer, and they may go to their physician who may say the same thing, "Let's give it a little bit more time. He's still young."
Or they may do something like do a screening. There are screens out there for determining whether someone could be on the autism spectrum. They're not perfect, but they're not bad. And that might be an alert that maybe somebody needs to look at them a little more carefully. When they go to preschool or they go to a daycare center, often those centers will say, "He just seems, or she seems a little different than the other children. I think you should get them evaluated."
And of course, Erie County has the ability to do those evaluations, which is wonderful. And those screenings. When they go for an evaluation, centers like Robert Warner or the Summit Center where I'm actually retired now, I do spend a little time there, but I'm not the CEO anymore. They'll come in and there are some really good instruments now for doing diagnostic assessments that can be pretty accurate even at a young age.
And it didn't used to be that way. And they're going to look at a couple characteristics. They're going to look at their social communication, because that's really a hallmark of what defines autism. They have language, but they don't use it in a way that functions to socialize with others. And they may not recognize another person's perspective. They might not even recognize their parents' emotional state.
And even the things that we know about how people stand, how they interact with you, they may not recognize those little subtleties and that type of thing. The second piece is that they may have repetitive mannerisms and some rigidity to change. So the repetitive mannerisms can be anything from really an overemphasis on a certain area. They're very expert as flags, for example. I don't know if that's right or not, David. And they'll really get into a particular movie or the lyrics from a movie.
It made me think, when I was thinking about this, a kid, if you ever saw Stuart Little, I had a student who would always... You'd introduce him to somebody. His first thing was, "We don't eat family." And that was a line from that movie. It's just stuck in my head for now 30 years, that student using that line, or from the Rain Man. And they can do just extraordinary kind of things. But there's a whole group of individuals that have little or no language, that don't have those advanced behaviors. They're certainly functioning more intellectually delayed than others. And so this is a broad spectrum that can happen with that. And there are good centers for getting that evaluation.
Emyle Watkins: Absolutely. I mean, that even reminds me of Carl the Collector who we have behind us, with us. Carl the Collector, his special interest is collecting. He just loves collecting. He shares his collections with his friends and all of his friends who are also neurodivergent have their own special interests that they share in the show. But also there's such a wide range of experience represented from people who may be nonverbal to people who may be both ADHD and have autism.
So it's such a wide range of experience, and that's why I'm so glad we're talking about this today, because I think it's important to recognize people from lower support needs to higher support needs. And yeah, I know one of the challenges with autism has just been that a lot of the early diagnostic criteria was kind of created based on certain races, certain genders, and how have our ideas around autism, particularly around girls and people of color and adults who get diagnosed later in life, how has that changed in your career?
Dr. Stephen Anderson: Yeah, a couple of things you said there. It is a spectrum disorder, as you said, it'd be a broad range. And I think we have to always remember that when we talk about how we're going to best serve them. It's not going to be a one-size-fits-all type of thing.
It's interesting on the diagnostic piece, there is a large number of boys that have autism, far more boys than there are girls. And that's probably genetically based. But girls also have an extraordinary way of, it seems like trying harder to socialize, masking some of the deficits they may have. At least that's our belief. And so they're underdiagnosed in many cases. The CDC every two years has a report that they put out on the prevalence of autism among 12-year-olds that they're assessing, and I think it's 11 sites. And for the last several reports, the frequency of individuals being diagnosed who are black and brown has gone up pretty dramatically.
And now you may say, "Well, then that means there's something going on with that population." But there's no evidence that any ethnic group or racial group has more kids with autism than others. But what we can say about certain populations is what opportunities did they have? What access did they have to assessments? And those are going up because they're finally getting access to the service they need, the diagnostics that they need, and so on and so forth. So I think before we overgeneralize, I think that's more about their access to services than anything else.
Emyle Watkins: Dr. Sosa, I want to bring you into this conversation, because I know in addition to having your medical degree and a master's in public health, you also studied biological sciences and African-American studies at Stanford, and you've gone on to become such a strong advocate for equity in healthcare. I'm wondering how these racial inequities and the diagnostic process and in resources has maybe impacted your patients and their children.
Dr. J'Leise Sosa: I think I echo what Dr. Anderson said, that historically we know that in African-American communities and females, that autism spectrum disorder is underdiagnosed. And this is as a result of provider bias, about misconceptions about behaviors and attitudes in young children. There may be misdiagnosis being having a behavioral disorders instead, so perhaps oppositional defiant disorder, some sort of conduct disorder as opposed to having autism spectrum disorder or ADHD.
And thankfully, with time, there's still a lot of work to be done, just to be said. But thankfully with time, the I would say advocacy from persons with disability of color, addressing that has helped the medical establishment be a bit more aware, and then be more aware of the nuances and not over-diagnosing or mis-diagnosing individuals in that way.
And so I think we've come a long way for us at our clinic, we are able to have a psychiatrist and psychologist in-house who are also able to help assess our patients, which is really helpful. And so having medical professionals who are tuned in to the bias that already exists, and then being able to truly assess patients who may be marginalized traditionally is what gets us to have better outcomes and more diagnoses so folks can be treated.
Emyle Watkins: Thank you so much. And I think that's huge because I think we hear about this so-called rise in autism, and I think it's very easy for people to forget that the disabilities field as a whole has grown tremendously in the past 30 or 40 years. The outcomes of our lives are quite different than they used to be, but the resources have changed, the diagnostics have changed.
There are so many elements that have gone into just making it possible for more people to understand those things about themselves, versus anything necessarily contributing to that rise other than it's more possible now than ever to find out that about yourself, to find out if you're autistic or if your child's autistic. And Dr. Anderson, I want to come back to you because I'm wondering what are some of the myths that are very prevalent around autism that we know science has debunked?
Dr. Stephen Anderson: Well, there's so many. I mean, the issue of, I don't want to step on toes with some of the other things they're going to talk about here, but that autism is caused by vaccines. And I'll let others speak to the research on that. And I think there's so much research showing that there's not a connection there, that the increase is due to some environmental influence. Now, we don't know yet.
Certainly there is a genetic component to autism, and that explains some extent the boys versus girls, but I don't think we've ever been able to isolate a single gene, it could be literally hundreds of genes could be responsible for the autism. So there's another myth. I'm trying to think of other things that might be critical, I know I had a whole bunch in my head earlier today.
Emyle Watkins: Well, there's so many, and I appreciate what you brought up about genetics. I went to a conference over the summer in health, and that was a big discussion, is that there are even just studies happening focused on certain populations to just try and identify all the different genes in that population that could contribute. And I have a genetic disability that, along with causing this genetic disability, this genetic change, also, we're more likely to be autistic if you have Ehlers-Danlos syndrome, for instance. So there are other disabilities where those disabilities also have a higher prevalence of autism.
There's just still so much we're learning, and I really want to dive into the things we're learning. Dr. Hartley-McAndrew. I want to ask you, what do we know about those potential causes of autism from research? What does the science tell us could cause autism?
Dr. Michelle Hartley-McAndrew: Yeah, so I just anecdotally, vaccine hesitancy has been around for quite a while. I think Dr. Hicar is going to talk about the famous Lancet article, but over 20 years, and COVID certainly helped exacerbate that vaccine hesitancy, but that was five years ago. So I do see children that come in for evaluations that haven't been vaccinated, and we diagnose them with autism, but the reason that they haven't been vaccinated is because the parents are concerned because they might have had a sibling that also has autism.
And so what we know about what causes autism is that it's complex, as Dr. Anderson was mentioning, but it does have a strong genetic component. For decades of research that scientists have done, it is over a hundred different genes that have been shown to have implications of causing autism. Now, there is a genetic component, and then there's other risk factors that we know about, those risk factors like advanced parental age or premature birth or things like that, that can increase a risk of having autism.
So we know that from twin studies, like identical twins, so the concordance for identical twins, is about 70 to 90%, so that means if one identical twin has autism, there's about a 95% chance that the other twin is going to have autism. So now if we look at fraternal twins, so that concordance is about 20 to 30%. So there's still some concordance, but if you have one child with autism, that other twin, the fraternal twin having autism, is more like 35 to 40%.
So what that tells us is that there's a pretty strong genetic component. So it's complex. There's a lot of factors, but we are constantly looking at it. But we know that there's a strong genetic component, as Dr. Anderson was saying. And this field of genetics is really exploding. And the American Academy of Pediatrics...
Dr. Michelle Hartley-McAndrew: Is really exploding. And the American Academy of Pediatrics is really recommending ... Well, the American Academy of Neurology has always recommended genetic testing for autism, but now other individuals with developmental disabilities and things like that, just because we are learning so much.
Emyle Watkins: But it sounds like even with these tests, it could be hard to know. It doesn't sound like there's, correct me if I'm wrong, but it sounds like there isn't a hard and fast don't do this and you won't have an autistic kid, do this and you will have an autistic kid, test for this, you'll know for certain. It sounds like there's really no way to know for certain if you'll have an autistic child.
Dr. Michelle Hartley-McAndrew: Yeah. So there is no one single cause, and I think that's what you're getting at. So I think just going back to the correlation versus causation, and I think the challenge is that with the normal sort of autistic presentation, that history that we get, about 20% to 30% as Dr. Hicar and I were talking about earlier, there is a regression, and that's going to happen no matter what. So you get this sort of natural history in 20% to 30% of the autistic presentation that will have some regression. And so normally parents will, as humans like to do, is they try to figure out, well, what could have been happening around that that could have caused it. And so there are families that say, "I think it was the vaccines." But it doesn't actually happen as often as you would think. A lot of times they'll say, "Oh, it was another major life event that happened. Like we moved or something, and then they regressed around that time."
Emyle Watkins: But it sounds like understanding, and the whole goal of tonight is understanding autism a little bit better, understanding those things that can cause regression can cause changes. Dr. Anderson, do you have something you want to add?
Dr. Stephen Anderson: I was just going to mention those. I'm glad you brought those regression cases where kids seem like they develop pretty well, and then they begin to lose skills. Even those cases seem to suggest when they have videotapes of the early development of those kids, there actually were signs prior to that regressive period showing those kids had some of the features of autism very, very early.
Emyle Watkins: So it's hard when we see that regression to kind of figure out is there a causation. And there can be things that cause it, but also it might not be the things people think of it sounds like. And one of the things I wanted to ask you about is when a parent finds out their child is autistic, I'm sure you see a lot of varying reactions. And obviously a lot of parents dive right into, understandably, how did this happen, could I have changed anything. What do you tell them? What matters when their child is diagnosed? What advice do you give them? What hope do you give them?
Dr. Michelle Hartley-McAndrew: Yeah, so sometimes I'll just ask them, "Was this something that you were expecting?" And they'll have various response. One of the most important things that I sort of explain is a little bit about, I say that you're the expert on your child, obviously you know a lot about how your child responds, I'm going to share with you what we seem to understand about how children on the spectrum learn.
So I kind of try to explain it's almost like a social learning disability. So if I have a sort of reading learning disability, I need my therapists and my teachers to help me practice some things that aren't coming very naturally for me. So one of the most important things is that if you have an autistic child is that they could learn. So there are certain skill areas that aren't coming very naturally for them, but the teachers and the therapists will help them learn some sort of social and communication skills that aren't coming as naturally for them.
So I think I try to encourage them that it wasn't anything, one thing that they did. I try to explain, especially if they've had that experience of regression, I explain it and kind of correlate it to many sort of neurologic conditions like Alzheimer's, dementia. There's a time to onset for that and that's deep within the genes. That's going to happen regardless of what has ... Nobody did anything to trigger that. And so I talk to them that their child can learn and it's really everybody else to understand that your child learns this way and how we can help them learn.
And then the other thing that I tell them is just because they're not looking at you doesn't mean they're not paying attention. And so that's a really important thing. And I think it's good for parents to understand their child a little bit more. They just haven't learned that skill to pair their body language with their sort of vocal and verbal language. And so those are the things that I tell families and caregivers.
Emyle Watkins: I think that's huge because I think it's about helping people not feel shame and guilt, that it sounds like our society for a long time has kind of told people that they need to feel about having a disability or a genetic disability or their child having a disability that can have a genetic cause. And David, I know you went through this firsthand, what it's like to get that news. What was your reaction when your child was diagnosed and what questions did you have?
David Herring: Yeah, so like I mentioned earlier, I strongly suspected ADHD to begin with. Because of the nonprofit work that I'm involved with and just being around a lot of autistic folks in the community, I was, like I said, I was starting to see things that seemed a bit more than just ADHD alone. And so I guess I wasn't terribly surprised. I felt pretty confident he was an ADHD-er. But I've also, for many years now, I've also been suspecting that I'm autistic as well. And so yeah, it didn't really super surprise me.
I think that really just the first question I had was, okay, how soon can I set up a new IEP meeting and can we review basically his current services, everything that's in the IEP, and given the diagnosis now, what would be some appropriate adjustments. But I heard what Hannah was talking about, and so I can only imagine though if I hadn't done a lot of the work understanding my own neurodivergence, if I was a young parent, very uninitiated, no, I can certainly see how that's a lot to take in, especially if you just haven't really been taught a lot of information surrounding autism. So yeah, it was just really, I think for me, okay, given that we know he's autistic now, how can we address his needs?
Emyle Watkins: Absolutely. And Hannah, you want to add to that?
Hannah Brecher: Sure. So adding to what David said, I definitely went through early intervention when I was a very young girl, and it really did help me. And I heard a lot of stuff about early intervention. And the reason why the numbers are rising for people with autism, it's not just because of the diagnosis, but it's also the acceptance of the diagnosis, it's also the awareness that we're spreading, and it's also because people are starting to come around to it.
And it's such a beautiful thing because it feels like we've been hiding for so long, and now we can just finally be our authentic selves and not have to worry about people staring at us all the time when we're in the grocery store or having to explain to ourselves, I don't know, a hundred times to other adults of why I wear usually all-cotton clothes because I'm allergic to the wool or I have sensory issues to certain types of clothing. So I have these different certain situations that have happened, but I get around them and I speak up for myself through being able to use my words very, very carefully to be able to say this is who I am, take it or leave it.
Emyle Watkins: I love that. And thank you Hannah for saying that because I think that's what tonight is all about, right? For any of the parents out there watching, any of the families watching, everyone on this panel I think would say we understand some of the fear and the confusion of something happening that maybe you don't know a lot about. Maybe you've gotten this information on the internet that scares you or confuses you or you've been made to feel like there should be some shame or guilt around this change for your family. But as Hannah said, it doesn't have to be a negative thing. You've pointed out that this is something that empowered you. And David, it's something that empowered your family to get the right resources for your son.
And I want to make sure that something we address tonight is the topic of vaccines because I think that is a place of a lot of fear and confusion and it doesn't have to be. So Dr. Hicar, can you just talk a little bit about where this myth of vaccines cause autism came from and why it's not true?
Dr. Mark Hicar: Yeah, I'd be happy to. So modern vaccination, so we've kind of known about autism, I think Asperger was one of the first to describe it in the 1940s. I'm a little bit out of my field right now when I say that. But we've had modern vaccinations since the fifties with polio, and then smallpox, and adding Pneumovax or pneumonia vaccinations after that. And really it was not on anyone's radar that vaccines and autism were connected.
In 1998, Andrew Wakefield, who was a British gastroenterologist, published this paper that was a descriptive paper of 12 individuals who had some type of autism described. And there was a correlation in reports of the parents that this was somehow around the time that they had their MRR vaccine. So he published this paper. It was a pure observational study, much like someone walking out and saying, "There's somebody sunburned and somebody eating ice cream. Those two things are connected." It didn't have any controls. It was a very, very little, very basic study in science. One of the most basic things you can do is just describe observations, and that's really what the study was.
It was somehow published in Lancet, which is a very prestigious journal. Still unclear exactly how that happened. However, it took a while to get retracted, but 12 years later they retracted the study for a variety of reasons, and I'll get into that a little bit later.
What he did after the study was published was he had a press conference and started touting the idea that because this association he saw, and he saw basically these children with autism had gastro, basically their guts were inflamed basically, and he had some people do colonoscopies on them and they looked at their guts, but there was no kind of viral studies that backed any of this up. So he published this paper, then he started having press conferences.
And probably not many people would've followed up on the paper, but it was getting enough press and actually influencing people's opinions on vaccination in Britain particularly. So a number of three different studies followed up on this, including studies that were well controlled, and they did biopsies from the gut and looked directly in comparison to each other and saw no correlation with measles products, or virus, or antibody levels or anything basically. So we had three different research groups follow-up on these studies and basically said his observation may be of interest, but it didn't really mean anything.
However, he kept going with this. He lost his license and the Lancet retracted the paper because when they looked into these things, he was actually getting funding from a lawyer who was suing the producers of the MMR vaccine. He was also put filing a patent for his own single-containing vaccine, measles virus vaccine. So that's one of the reasons why he came out in the press conference and said, "I saw this association. You should split the vaccine into three parts." Which is a terrible idea by the way, and it's a terrible idea that you might've heard about recently as well.
So it's a terrible idea to split the MMR vaccine for a variety of reasons. We don't even have those products available, really readily available now anymore. And at that time, he had an obvious conflict of interest that he didn't disclose, and that led to the Lancet pulling his paper and also losing his medical license. And there were other things actually, the colonoscopies weren't really clinically indicated, and there's a variety of reasons he lost all credibility. However, this really took hold and spread to very famous people have brought this up. Jenny McCarthy and Jim Carey were touting this as an idea and it really unfortunately has influenced and is continuing to influence anti-vaccine ideas to this day.
Emyle Watkins: So essentially, I actually didn't know he was a gastroenterologist, so essentially a stomach doctor who was friends with a guy who is suing the vaccine company, so he was giving money to the stomach doctor, and the stomach doctor found 12 autistic people and went, "They're vaccinated. That must be it." And then just did some not great colonoscopies and then ran with this?
Dr. Mark Hicar: That's a good summary. It really was a study that is ... He went out started touting this in public and had a press conference about this very observational study, and really probably no one would've really followed it up. He really should have followed it up and made this a better study for the next study. That's what you usually do in science. If you see an observation like that, then you're like, "Well, how am I going to actually prove this correlation that I think is happening?" Once again, sunburn and ice cream basically. Is one causing the other or is this something else that's causing both?
Emyle Watkins: That's just shocking to me because I would never go to the guy I get a colonoscopy from to talk about autism.
Dr. Mark Hicar: Yes, I don't really know the background why he started. Well, he was also developing a measles vaccine. There seems like an obvious conflict there that he didn't disclose when he sent the paper and you really should disclose that you're filing patents and things like that.
Emyle Watkins: I just point that out because as we talk tonight, and we have a great resource guide online that'll be linked on our website and that's on the Erie County Department of Health's website, where you get your information from matters. And that's why I point that out because the simple version of that is a stomach doctor saw something, wrote about it, and people ran with it. And that's the thing is we need to do our research as parents, as advocates, as people with these disabilities. We need to be our best own advocates and experts and we really have to read up on these things and go, "Is that someone I trust for information?" I think we see so much information online and it pops up on TikTok and we're like, "That must be true." But you really have to step back and say is it. And Dr. Anderson, I know you wanted to add to this.
Dr. Stephen Anderson: Maybe you can clarify this for me, but the other piece of it was that the vaccines in this country, a preservative was used. That way, they could be made in less sterile environments. So thiomersal had ethylmercury in it, and that became its own conspiracy basically. And for whatever reason, the pharmaceutical companies here continued to produce the vaccines in that way, even though a lot of other countries took out the thimerosal, weren't using it anymore. So I think that created just a mistrust between the CDC and parents of kids with autism. And I don't know how familiar you are with that, but I always thought that was a big deal too.
Dr. Mark Hicar: Yeah, I was going to get into that on some of the reasons why people are still hesitant about vaccines. And thimerosal sounds scary. We haven't had it in any of the children's vaccines basically for over 25 years now. And it really has shown no change on the incidence of autism, basically taking that out of any of the vaccines, and even when they take it out in Europe. And really ethylmercury, there's a whole issue that you get into where people are afraid of chemicals basically. And then toxicity levels are also come into that. What is a toxin? What is a poison?
And so we can all take too much dihydrogen monoxide and end up dying. Dihydrogen monoxide is water. You drink it every day. But it sounds much scarier when I say dihydrogen monoxide. And you can overdose on water, you have to drink a lot of water. We do not recommend it, obviously, but you can actually overdose on water. And so knowing that cyanide's a poison that everyone recognizes as a poison, however your cells make cyanide. Every cell in your body is making cyanide right now at a very low level. It's necessary for certain processes. But this is basically, there's a toxicity level when something's in something. And just because something has a chemical name doesn't mean it's a bad thing.
Emyle Watkins: Like acetaminophen?
Dr. Mark Hicar: Like acetaminophen, yes.
Emyle Watkins: Which is Tylenol. Dr. Sosa, you have something to add as well?
Dr. J'Leise Sosa: I may be jumping ahead, but I think you brought up a great point, Emyle, about knowing your sources. But I want to make it clear that it's not always on the onus of the individual to do so. As Dr. Hicar highlighted, this came from the Lancet, a highly recognized, almost like the religious text of medicine. And there are gatekeepers who are editors who lead this submission and then decide it's published. So if you can't even trust the scientific source, then we can't fault individuals for being leery and concerned. So it's not necessarily always TikTok or social media, I think we as medical professionals also have to make sure that these articles are truly vetted, that they're studied on a diverse group of individuals and that there are studies that are based in high quality science.
Emyle Watkins: Absolutely. And that brings up questions I had for both you, Dr. Sosa, and for Dr. Hartley-McAndrew. One of the most important things is that doctor-patient relationship, right? It can be hard to know who to trust online. It can be hard to know who to trust in the science world. It can be hard to figure all of this out, but that doctor you have is someone you can trust. That should be the one person you can go to and ask any question. I'm wondering how you both have navigated those conversations with your patients, not only about vaccines, but also more recently about Tylenol and about other alternative treatments. I see people trying different diets, there's been talk of glucoiberin. How are you both navigating that conversation with your patients and what do you tell them about Tylenol vaccines and alternative treatments?
Dr. Michelle Hartley-McAndrew: So I'll let Dr. Sosa talk about the Tylenol. But as far as some alternative treatments, because a lot of times the child has autism by the time, and they're asking about alternative treatments and things like that. Usually, I try to maintain trust with the families and I ask them to just be cautious with things that promise big things with a lot of cost.
Recently, some medical students did a study on TikTok and it was presented in a recent conference. And they looked at 50 videos that were recommending certain dietary treatments for speech delay with regards to autism. So they looked at just the first 50 videos because they were medical students, they're younger, I wouldn't know how to study TikTok or whatever. So they looked at the 50 videos, and these 50 videos had 50 million views, 76,000 saves, 75,000 shares. Of these 50 videos, I think 41 of them were inaccurate or had insufficient evidence to back their claim. And 45 of them actually were linked to a product for profit to sell.
So those are things that I just encourage them to just watch out for, just things that cost a lot and have these big promises. The other thing is certainly trying to guide them away from things that are overtly harmful, like chelation, pulling out heavy metals, because that could cause arrhythmias and things like that. And then please don't do them at the expense of evidence-based treatments. Like if you're going to try this, please don't do that instead of some of the therapies that we know are known to help and are more evidence-based.
Emyle Watkins: And Dr. Sosa, on the topic of Tylenol, because I know that's been more recent, tell me a little bit about what you say to patients who are concerned about taking Tylenol in pregnancy and also what's the risk of not taking.
Emyle Watkins: ... about taking Tylenol in pregnancy and also what's the risk of not taking Tylenol or not vaccinating that child when they are born?
Dr. J'Leise Sosa: Yeah, so I think it's important as a medical provider to start with curiosity instead of being accusatory, instead of just sort of establishing that I'm the only one who knows the truth, I need to understand why my patient may be hesitant, why they may be concerned. I would encourage them to show me that TikTok video or tell me about the Google search, a lot of folks are coming in telling me they put their symptoms in Chat GPT and Chat GPT told them this is what they have and that's okay. I think the important part is that they're having that conversation with me, that they're not just taking the information and then running with it. They come to a trusted professional and then we have a discussion about it.
And so with regards to a acetaminophen specifically, we know that none of the studies that have been done have been shown to have a direct causation between acetaminophen use in pregnancy and leading to autism. I think the major study was in 1970s that falsely again, that association, that correlation that we're seeing autism in individuals they happened to have had acetaminophen in the pregnancy, but those studies were not well controlled, meaning they didn't have a similar group undergoing similar scenario who did not get exposed to acetaminophen or Tylenol at that time. They also didn't control for what we call confounders, so were they in an environment that also could have contributed to autism? Was it the actual fever that the patient had that led to autism, not the use of the acetaminophen. And we have more recent studies in 2021 and 2024, which looked at twins, that's a really good way to have a control. And when twins were studied, there was actually an even lower risk of autism in twins where one twin used acetaminophen and the other did not. So the very opposite of what the claims are saying is what occurred in those studies and those studies are deemed to be high quality ones.
So when a patient comes in, I first let them know that we are limited with what you can take for fever and for pain in pregnancy. Outside of Tylenol, there really isn't much we could do Ibuprofen, Advil, those are not recommended in the first or third trimester. They could affect a baby's heart, they could lead to low fluid causing preterm birth, which as mentioned before, preterm birth itself can be a cause of autism. So, Tylenol is it, we would not recommend opioids for pain management because we know about opioid pandemic is what we use... Epidemic, my apologies, the opioid epidemic and we don't want to lead to dependency on these. So again, if we say no to Tylenol, we have very little to treat women in pain, women who have fevers in pregnancy. And that's not to say we're just going to use it because we have nothing else. It's because we know there are no studies that show clear causation or correlation between the two.
Emyle Watkins: And those fevers-
Dr. J'Leise Sosa: Causation, sorry.
Emyle Watkins: And those fevers can be much more dangerous than taking Tylenol.
Dr. J'Leise Sosa: Exactly, yeah. So fevers in pregnancy can be very harmful to fetal neurodevelopment in particular, and it can also lead to preterm birth. And so it is important that a woman who's experiencing fever, that fever be treated as soon as possible. It is also important that women who are experiencing headaches in pregnancy, one of the things we do is actually to have them take Tylenol. And if that headache is persistent, they don't have a history of migraines it actually may be an indicator of preeclampsia, which is another life-threatening condition in pregnancy. So Tylenol has very useful need in those who are pregnant and absence of its use or choosing not to use it could have pretty negative outcomes for the parent and for the fetus.
Emyle Watkins: And Dr. Hicar, in light of all of this, we were just talking about how we couldn't trust these initial studies on vaccination and right now people are very confused about and hearing this information about Tylenol. I want to ask, how do we know that we can trust the research that says vaccines don't cause autism that's currently out there, and what are the risks of not vaccinating?
Dr. Mark Hicar: Yeah, thanks. So there were those three follow-up studies that kind of directly debunked Dr. Wakefield's assertions, but it was still pervasive in the public. And so since then there's been very large epidemiological studies, 16 have been published that specifically looked at autism rates, regression within children who are autistic in those groups, they looked at thimerosal, and they looked at amount of shots, that's another thing that some people worry about. Oh, there's too many shots at a time. Trust me, every infection they get has way more immune stimulation than any collection of vaccinations you get at your doctor's office.
So there has been 16 studies, they studied over 1.8 million children in all these studies and all of them showed no association of autism and vaccination. And particularly, they didn't see any difference in regression in those who were vaccinated and those who weren't who had autism. And even before the regression studies, before vaccines, or before the MMR and was even licensed, have shown no difference in regression rates between before MMR and after MMR. So there's just this preponderance of data, every major clinical group supports sticking to the vaccination recommendations and supports that vaccines are safe for your child and in pregnancy, by the way, the ones that are recommended. So what was the next part of your question?
Emyle Watkins: No, I think you summarized it. I just mean some of these conditions that the vaccines prevent, like my mentor has post-polio, she's told me about how that's impacted her life.
Dr. Mark Hicar: Oh, yeah.
Emyle Watkins: These infections like polio and measles are dangerous.
Dr. Mark Hicar: Yeah, these are dangerous. I mean, I've unfortunately seeing a child die from measles and it's obviously terrible. It's rare that children die from measles, but still one in four children with measles end up in the hospital and one in 10 get pneumonia from measles and that could be very severe, long hospital stays and is greater risk. So these are not benign infections when they happen necessarily.
So vaccinations taking on the... That's one of the things you'll see on social media, my child has never been vaccinated and he's perfectly healthy. Well, luckily most kids never go to the hospital so this is a problem with trying to say that's a correlation that because you didn't vaccinate, your kid didn't go up in the hospital, most kids aren't going to end up in the hospital. But the kids who end up in the hospital with flu, kids who end up in the hospital with COVID, almost none of them are vaccinated. So that's the correlation is that the kids who are in the hospital basically skip their vaccines.
Emyle Watkins: And Dr. Sosa, do you want to add to that just briefly?
Dr. J'Leise Sosa: I really just wanted to add a personal, I had measles as a child, I am from the Caribbean and vaccination was not nationally performed at that time. And one of my classmates actually died of measles, her name was Maria, I was probably eight or nine years old and I remember her face up to today. And I got measles and I remember being very afraid that I would die like Maria too. I remember having fevers that would never go away, having this rash over my entire body, my mom giving me these calamine lotion baths and it was pure misery. But within six months of that, when there was a huge outbreak in the schools, vaccination became mandatory in all the schools I remember us lining up to get them. And because of that personal experience too, I think I am very, very much strongly an advocate for vaccination, seeing what it does to improve the health of entire communities.
Emyle Watkins: Thank you so much for sharing that and I'm so sorry to hear that happen to you. I mean, these are things that don't need to happen to children anymore. I think in the disability community we always talk about we're excited and willing to accept anyone who comes into our community and needs help and support, but we don't want more people becoming disabled that don't need to be. And I think a lot of this, again, comes back to that shame and stigma around autism. I think again, it goes back to the messaging a lot of us grew up with that autism is one of these bad things that can happen to your children. We're getting close to the end of our show and Hannah and David, I want to give you a chance to leave our listeners with what do you want them to know about autism, about having an autistic child or an autistic adult in your family? Is it this scary, bad thing or can it be a joy? Can it be a wisdom?
David Herring: So I think autism is beautiful, if there was a cure for autism, I wouldn't want it. I want autistic minds in the world that I live in. It's not the end of the world, I think at one point someone made a reference to say a young parent who's maybe already had an autistic child and then is worrying about the next one having it. I'm more interested in us finding cures for ableism than I am a cure for autism. I get it, especially if you're a young parent, you don't feel equipped to navigate a lot of the information.
On some level I get why people are drawn to ideas that are not backed by science because there is kind of of and in itself some community in that, I would argue it's not the most productive means of having community. But when you're feeling a lot of uncertainty, when you're feeling overwhelmed, I can see how it comes to that. So I would just say, and to let me be clear, the neurodiversity approach isn't about these pollyanna-ish notions. Many of my colleagues, we don't take the strength-based approach to a point where we're denying the real needs that people have. So I think find productive community, pause when you see information, and find ways to celebrate the beautiful autistic child you have.
Emyle Watkins: Absolutely. I really appreciate you saying that. I want to emphasize again online, we're going to have a lot of resources you can dive more into these topics about Tylenol, about vaccines, about resources for your child or for you because this isn't something like you said you have to go through alone. There is such a beautiful, vibrant community that I personally feel so lucky to be a part of. And Hannah as someone else in that community, what's your message to people out there who are encountering autism or going through diagnosis for the first time?
Hannah Brecher: For me, it was a scary process, telling my cousins about my autism and stuff and seeing their reaction. I had it in the back of my head now I know who to trust and who not to trust in my family because it took me a long time to tell them. And I had to go down the list of a lot of my cousins and tell them individually about my autism and I saw a lot of people turn their backs on me just because of my autism, just because I was different, and just because I wasn't this perfect child that they all wanted and it hurt me to no end.
I still keep in contact with a certain few of my cousins and some of them have contacted me and said, "We love you, we support you." Some of them have definitely reached out to my family, have opened their arms to the fact that yes, I am autistic, but that's not all of me that's just part of who I am. I think of my autism as my superpower, I'm doing something for the good of the advocacy community. And one of my advocate friends who's probably watching her name is Heather Romanak from the Watertown era, she actually said that she thinks of it as her superpower and she would not want to change her autism because she happens to be autistic herself so shout out to Heather, I think of you when I think of that.
Emyle Watkins: And I think that's powerful what you both just said is because again, so much of the dialogue around this has focused on what causes it, is there a cure? But there's people like us who are living and thriving with this. There was a time where journalists like me couldn't be open about being disabled or neurodivergent, it's still very hard with that ableism. But we can be visible and we can be visible in our fields, we can have PhDs, we can be self advocates, we can become doctors and this doesn't need to be something people need to fear. It just takes some learning, it takes some gathering of resources, I know two of the great resources that you all have recommended that is linked online is Healthychildren.org, which has some great information about science-backed resources and just information in general.
And David has a book that's linked for parents who might be going through a diagnosis for the first time, that's a great introduction. And we of course have Carl the Collector on PBS Kids, which I've heard a lot of parents have used to be able to have that conversation with their kids and say, "See, Carl, he loves collecting all these objects, you love flags. This is okay, this can be beautiful, this can be enriching."
David Herring: The book is on the Erie County Resources, the beginning of the title is start here, it's through the Autistic Self Advocacy Network.
Emyle Watkins: Which is also a great organization and a great example of autistic people leading the way. The Autistic Self Advocacy network is run by and for autistic people, I've used them as a source several time in stories because they follow the science and they live it so they get it. And I know we're running a little bit past when we said we'd be ending the broadcast, so thank you for sticking with us we had some technical difficulties at the start.
As we wrap up our broadcast, I want to bring it back to the person who kind of kicked off the idea for this event, Pastor George Nicholas, you came to Dr. Burstein with this site, not even an idea yet, but just a concept of we need to do something about this. I want to hear your message to the community. What would you encourage as someone who is an advocate and a leader locally in health equity?
Pastor George Nicholas: So I wear many hats and as a health equity advocate, as a pastor, a member of the clergy. But I'm also a parent of a wonderful young man, Georgie, who's over here with us tonight. And never once did I ever feel that there was something wrong with him. Never once did I feel that my wife and I did something wrong to him. So my message is this, there's a couple of them real quickly. One is, for those of you who have people who are autistic in your life, celebrate who they are. Don't try to fix them because they're not broken. Don't try to change them, but change the way you interact with them because it's a wonderful gift people who have autism are giving to this world. We have to make room for them in our educational institutions, and our healthcare systems, and every part of our society and make sure that we surround them with a community of care and understanding.
I'm very concerned about the numbers as I see, especially in the African-American community and the growing numbers. I think some of it is related more awareness and hopefully more early intervention. The best thing that my wife and I did was when we got the diagnosis, is to find the best possible services and support we could provide for Georgie. That comes from a position of privilege, my wife and I are both college-educated, professional people. Not everybody has that access and one of the things I was talking to my friend over here, Summit was one of the place, but we we need a Summit on the east side because if we have some more children from those communities who are being diagnosed, then we need to make sure and find ways to put centers in their communities so those mothers and fathers can walk their children or to some of the programs and we're going to work on that together.
Finally, one of the great privileges of living in the United States of America is that we have access to information. And when I called Dr. Burstein, I knew that I was calling a trusted source. I didn't call her because I like her as a friend because I do, but she is the commissioner for Erie County, the health commissioner, and she's a pediatrician. So I know I could talk to her about this issue and get the facts, get the truth, because she has studied, she has experience, and she has a commitment to all children. I am greatly concerned that now in this country that we are almost sacrificing the access to knowledge and listening to people who are in very important and influential positions that when they speak, even if they are wrong, people will hear and they will respond.
So my message to the community is, one, the parents embrace your children, friends, family, embrace autistic kids. Let's make sure these families have all the services and all the access to all the support that not only that they need, but they deserve as part of our community. Then we also have to demand those who are in critical positions, positions of influence, that they are responsible and accountable for their words and that we listened to the trusted sources. I don't know how many years of education we got up here, but a lot of them, right? Well, people sacrifice, they work hard to get this knowledge, they don't just say things because they want them to be true, they say them because they are true. And so we have to begin to hold people accountable and we have to listen to those who have done the work, and then we have to make sure that we take care of everyone in our community and make sure everyone has access to enjoy the good things that we have in this nation. Thank you.
Emyle Watkins: Absolutely. Thank you so much, Pastor, I wish we could clap but we're all holding mics and that doesn't seem like it'd go really well. Oh yeah, this is both I believe Deaf and autistic community is a way to clap or jazz hands, as some people call it.
But I want to thank you all so much for joining me tonight, bringing so much lived experience, so much medical experience, science experience. This is what we need, this is who we need to listen to, are the people who've put the time and energy and work into making this their livelihood of spreading truth rather than people who just make a sound bite and I'm in the profession of getting those sound bites. There are people who have dedicated their whole lives to understanding these topics and building trust and I hope tonight everyone who's listened has realized that there are resources for you, there are people you can trust. You are not in this alone, you have a community here, the disability community, the autistic community, we're here to welcome you with open arms and let you know that you don't have to go through all of this alone.
And I would really encourage you, tomorrow we'll have this recording up on our website, we will have a transcript. Share this with people you know, check out the resource guide. And thank you all so much for tuning in to Buffalo Toronto Public Media's live stream of understanding autism.
