Эксперты обсудили новые подходы к пониманию аутизма и необходимость реформы финансирования исследований

This episode originally aired on July 22, 2026. Misconceptions abound, pushed by the Trump administration with controversial views on what causes it. Today, one woman’s personal crusade to educate and enlighten, as well as a doctor who specializes in treating children, and a national advocacy group on the state of autism funding and research. Guests: - Gabrie’le Eato, neurodiversity advocate and founder, Eleable - Dr. Eric Butter, chief of psychology at Nationwide Children’s Hospital - Dr. Andy Shih, chief science officer at Autism Speaks Transcript This transcript is generated with AI. To ensure its accuracy, review the audio file. Amy Juravich: Welcome to All Sides with Amy Juravich. Autism, it's been misunderstood, misdiagnosed, and the subject of a great deal of misinformation. Today, we're gonna learn more about it. And we're going to start the conversation with central Ohio resident, Gabrie'le Eato. She is an advocate for neurodivergent people. She's also the founder of El Able, a global digital design and branding agency. Welcome to All Sides, Gabby. Gabrie’le Eato: Hello, it's so nice to have you here. Juravich: And you have over 100,000 followers on TikTok. And to give listeners an idea of the types of things that you post about yourself and about autism, I wanted to play a snippet from one of your videos. Let's listen. Eato: Things I'm good at as somebody with autism and ADHD. I can type up to 220 words a minute. I love to sing! I love to play the piano. The world calls me a horrible communicator by just stereotypes but I'm an excellent communicator. I think the world just doesn't know how to communicate properly and they don't understand excellent communication. Speaker 3: I'm really good at pronouncing things like pita pepper pick the peck of pickled peppers and pita paper pick the pick of pickled pepper. So many pickled peppers in pita-pepper pick. Juravich: So the typing speed, your singing voice, word pronunciation, it's all very impressive. You said Peter Piper way faster than I can. What do you hope to convey for those who follow you in the videos you make? What are you hoping to share? Eato: So my whole slogan that I go by is Autism ADHD more than a label. So a lot of people, they get diagnosed autism ADHD and they allow the label to define them and fully as a person and that's something that happened with me. For a while I was suicidal and I didn't really like myself, almost could have lost my life. And I had all these labels and it was before even autism and ADHD I was diagnosed. I was struggling with my mental health. I was given all these labels and I was trying to find a place to kind of just like find like a way to like identify myself to fit in but you know I realized that you know autism ADHD like it gave me what I needed so labels are very important but it kind of taught me to love myself it doesn't matter like what label is on me but to kind of like embrace the good qualities of myself and know that You are capable of doing things and you have beautiful traits no matter what the world says. Juravich: Well, and you mentioned that there's a stereotype of people with autism as being poor communicators. You talked about that in the video. Why do you think that that persists? Eato: Because there's a lot of misunderstanding. A lot of people think that autism has like this certain look or this certain way of being. And, you know, while the spectrum is very wide, sorry, very wide. While it's very wide there are a lot of people across the spectrum and there are lot of different people. So it's really not fair to confine everybody to a label. We all meet the same DSM criteria, Bye. It's a very wide spectrum and everybody presents in their own way. Juravich: When did you realize that you wanted to become a public advocate? Did you just like, did you make one video and it kind of caught on or did you have an intention beyond that? Eato: So that's a good question. So I actually started social media when I was 10 years old. And I started it because I was getting bullied a lot in school. Kids at school would tell me to hang myself. They would call me a fat, ugly gorilla. They would say I was stupid, ugly, all these things. And it was a very difficult time. So I started actually posting on social media around 10, and I found an escape through it. And it wasn't. To actually cheer other people up, because I found this thing in me that made me feel good, like cheering others up. But what ended up happening is later down the line, I ended up building a psychology agency, it's a digital design psychology agency Elable, and I wasn't expecting to be an advocate like this, but what ended happening is there were a lot of parents that would come to me and ask me all these questions, because I'm very introspective, so I like to kind of like think through things a lot, end. You know, they would ask me and I would be able to like kind of put words to a lot of things that people would struggle with. So it was nice that God kind of opened that door for me to kind of like help other people. Juravich: Well, now that you are helping other people and you have all these followers, what would you say to that 10-year-old girl? Eato: She's loved and you don't have to fit into a mold or be something that you're not. I would try to force myself on people to get people to like me. And I realized that when you really embrace your true essence and your true self, that's all that matters. You don't need to focus with the outward. You just focus within yourself and love yourself. Juravich: It's hard to shed society's expectations, you know, to be a certain way. What was a turning point for you when you decided to stop letting others define you? Eato: Good question so you know I just I kept dealing with a lot of people who just didn't like love me for me and I was trying to fit into all these things and I met this lady she was so sweet to me and she mentors me a very good person and she would just kind of like uplift me and just kind of taught me that it's about loving you you don't have to focus on other people and what they think about you because not everybody is gonna like Thank you. You just got to love yourself because really it's just you. Juravich: This is All Sides on 89.7 NPR News. We're talking about understanding autism with Gabby Ito, who has autism and ADHD and is an advocate for others who are neurodivergent. Tell us more about your LAable, your nonprofit. What are some of the missions there? Eato: So, Elable is a digital design. Juravich: Elable, I'm sorry, did I say it wrong? I did, yeah, elable. Eato: Don't worry, a lot of people say it this way, so it's okay. Juravich: Elable. Yes. I'm so sorry. Go ahead. Tell me about Elable, yes. Eato: So, Elable is a digital design psychology agency. It's focused on inclusive web design. So what I've developed is a stamp that people can put on their website if they have reviewed their website for ADA and WCAG compliance. So it's not saying that everything is perfect, but we try our best to have the best standards where people who are using a screen reader, maybe they're deaf, they're blind, they can go to the site. I had a lady a few weeks ago, she came to me regarding an autism evaluation and she was completely blind and she so happy that she could access my site. I've met people who were in emergent situations and they couldn't get onto a site to get help. So it's a big barrier and nobody really considers that when they're building a site. So my sites are built to be esthetically pleasing, but at the same time, inclusive. And then my nonprofit is Endiverse, So... And diverse is basically a place coming together to bring together a lot of people across the spectrum, but also just creating a community that has love as the foundation so that people can feel loved and included. Cause for me, I couldn't find a safe space. And there's a lot of places that have communities for like younger people but it's hard to find for like people who are like middle-aged teen adults. So I kind of like combined a bunch of things together and we have things all across the spectrum. It's a community for all people to find a place where they're loved and understood. Juravich: So is Endiverse, or Endiverse? Am I saying it right? Okay, Endiverse. Is it like a website or like a community or do you meet somewhere? Tell me a little bit more about it. Eato: Yeah, so we're going to have more public meetups soon, but there will be like a virtual option as well. What I have with it is it's supposed to be very inclusive and eventually there's going to be a building which would be really nice. And I'm working on a lot of like grant stuff and whatnot with that. But ideally it'll be for people who are sensory seeking and people who have sensory not seeking because there's again, a very wide spectrum. So the idea is to really include everybody. And stop confining to these labels and stereotypes there are, and find an inclusive space for everybody that's diagnosed with autism and ADHD to find a safe space. Juravich: Is that something you found was lacking when you were younger is, you know, a place to call home besides like your house. Eato: Oh my gosh, yeah, so like, it was just, it was always really hard to find a community that was inclusive. Even to this day, like, as an adult, it's very hard sometimes to find community that is understanding. And people can misunderstand a lot of things. I have a social pragmatic communication disorder. Even though I'm very, like I speak, sometimes I'll say something and it gets mismatched. And then like, it kind of like mixes things up a lot. And I know, Everybody kind of goes through this, but it's kind of a little bit more severe with me in some cases and then It's just, you know, there's so much misunderstanding, so people just judge people. But really, I want people to understand that if you have an open mind and open heart and understanding that everybody has a different way of seeing life and perceiving life, it's not just neurodivergence, just everybody across the board. We all have a different way of seeing things. It's something that you should just open your heart to and understanding not everybody sees things the same way you do. Juravich: Yeah, and you seem very busy. You wear a lot of different hats. And one of your titles is psychometrist. Did I say that right? Psychometrist, yeah. Psychometrists. I'm getting all of these words wrong today. Okay. Yeah, psychometrist. So that's a new word for me, obviously. What is that? Eato: So a psychometrist is somebody who does autism and ADHD evaluation. I score the assessment, I help with all of it. So I can help people basically get towards the point of diagnosis and a doctor will review and it's under supervision. A doctor will look at it and be like, oh, this is autism, this not. I kind of help with diagnosing, but I don't formally diagnose, that's very important because I don't want issues. I basically do all the testing, I'm trained in the gold standard ADOS, the Waze IQ, and the beauty of working with me is I understand masking and I understand a lot of different traits. I've tested people from age 3 all the way up to 60 years old. Juravich: What is masking? Eato: So masking is when you learn as a kid to act a certain way to, it doesn't even have to be as a kids. Like it's just you kind of cover yourself and who you are as a person to make other people happy. So for me, I had learned to mask all these traits about me. So when I did finally get diagnosed and stuff, there is a lot of confusion because people are like, oh, well, you look like you're fine. You have comfortability, you know, but I was really a shell of a person and very uncomfortable everywhere I went. Because I was covering who I truly was. Juravich: And so you're you could see if someone was masking on the test and because because if you mask on the tests You're not going to score where you should be. Yeah Eato: Yeah, so that's something that a psychometrist is trained to evaluate and see like read if somebody is masking or not There's certain things people do that you'll know if they're masking Juravich: So you're also a very creative person. Talk to me about what inspires your creativity. Eato: So I scored top 1% globally on a waste IQ for spatial reasoning. And I didn't understand, as a kid growing up, I was always really creative in a lot of ways. In school, nobody wanted to be my partner for the Spanish assignment I had, and I built a life-size Elmo, and a teacher gave me 100% on it. And now looking back at everything, I'm like, oh, this makes a lot sense, you know? And... I just, you know, for me, I played Neopets as a kid. I don't know if you know what that is, but. Juravich: I don't know what that is Eato: It's like a website that you can go and like you have like a pet and yeah Neo like a new pet and it's like You basically decorate the pet design the pet, but I didn't really do that as much as well I did that a lot like I did do that a but they had coding and HTML and all this stuff on there So you could build a whole market a whole store It was really cool and it like I apply these same concepts to in real life So now it's I have my digital design psychology agency my endiverse, all these great things. Juravich: And part of your work also involves helping to influence policy change in Ohio. So talk to me about the different policies that you'd like to see the state adopt, because I mean, that's a big thing to try to do. So tell me what you're trying to do Eato: I'm actually working with an organization to kind of like help on a federal and state level. So I really we're kind of working together something that I advocate for a lot is better like pricing on testing and not like excluding people out because there's a lot of families that can't even get the e-valve because it's like so expensive. Juravich: Meaning like not covered by insurance or something. Eato: Yes, yeah, so there's a lot of things going around that where I advocate for that because I think that honestly like For somebody's health and their being they really shouldn't have to Like struggle so much like I met this lady She was so suicidal like a parent because her son couldn't get the test because it was so expensive So I advocate that because i think that that's not okay and everybody should be able to live freely and happy Another thing that I notice is like often times like there's like a lot of things going on where they're pushing autism not really to be valued or disabilities in general. Disability rights in general are kind of like put on the back burner and seen as an afterthought. But I think if we put that at the forefront and we understand that everybody is unique and diverse and we don't look at people lesser than and we are inclusive, it really can change the world. Juravich: And I know you're focusing in on Ohio, but you're also organizing a multi-state advocacy tour and a lot of community outreach. So tell me about that. Do you wanna focus nationally or are you focusing on Ohio? Eato: So I, this year, I'm finishing this year doing a lot of conferences and stuff. I'm really happy because I will be speaking for the Suicide Prevention Foundation here on September 1st. I just got done speaking for, I know this is out of state, but I spoke with NAMI in North Carolina recently. I did a webinar with them. I'm partnered with Nami Mississippi. Hopefully we'll work with Namy Ohio next year. I did some things with Naming Ohio this year. And There's so many different places I'm kind of partnered with, but I'm focusing this year on just kind of like getting settled in a lot of things. And then the beginning of the year, I plan to do a whole like, the whole goal is to have a whole national tour. And then a year after that, we want to do a global tour. Juravich: Wow. All right. Well, good luck with that. When you get your global tour organized, come back and tell me about it. We've been talking about understanding autism with Gabby Edo, who has autism and ADHD, and she's an advocate for others who are neurodivergent. She has more than 100,000 followers on TikTok, where she makes videos and works to break down stereotypes with her videos. Thank you so much for joining us Have a great day, Gabby. Eato: Thank you so much. Juravich: Coming up, we're going to talk with a doctor from Nationwide Children's Hospital who treats kids on the autism spectrum. That is when All Sides continues on 89.7 NPR News. Juravich: You're listening to All Sides. I'm your host, Amy Juravich. Autism, it's been misunderstood, misdiagnosed and the subject of a great deal of misinformation. What does it mean to be, quote, be on the spectrum? And why do more kids and adults seem to be getting diagnosed now? And what are the research scientists learning? Well, joining us now is Dr. Eric Butter, Chief of Psychology at Nationwide Children's Hospital. Welcome to Allsides, Dr. Butter. Dr. Eric Butter: Thank you for having me. Juravich: So we just heard from Gabby Ito, who has autism and ADHD. She shared some from her personal journey and she talked about her advocacy work. She's working to dispel misinformation. I wanted to turn to you to understand autism through a medical lens. So what is, from a medical terminology, what is autism spectrum disorder? Then there's mild forms and severe forms because it's a spectrum, right? Butter: It sure is, yeah. And in some ways, your question is a good one, but I almost want to say that it's not helpful to completely think about autism only from a medical lens. And so likely you'll hear me pull in some themes that you heard from Gabby earlier as a person living with autism or living as a personal with autism. At its heart, we now have come to appreciate and accept both scientifically and from a society's perspective that autism is a neurodevelopmental difference. That means the brain develops differently, really from in utero all the way through the end of your life. And from very early in life, it affects how a person experiences and makes sense of the world, how they communicate, how they take in information. Represents changes to how people will communicate with each other, how they'll understand social relationships, how they adapt to change, how they process sensory information. So it's important to not think about autism as just a disease that one person has and that everybody has the same presentation. It really is a way of being, a way, of thinking and different people with autism need different kinds of support. Juravich: What does the term neurodivergent mean compared to using the word autism? Butter: Well, when you use the word autism, you will end up with that medical diagnosis. And specifically, you're probably talking about a person who has some identified impairments and some identified reasons for why their quality of life is suppressed by their neurodivergence. On the other hand, when we talk about neurodiversions without the clinical diagnostic label, you're talking about someone who thinks differently, communicates differently. Is able to hold social relationships in their life, but has learned how to do that in a way and has found their community and has people that they can trust and who they can tell secrets to and who can build a life with. So the quality of their life is not necessarily impacted by their neurodivergence, but they celebrate it. Autism itself, as you opened with the first question, is a medical diagnosis that implies a certain range of impairment that we would design supports and intervention for. Juravich: And as Gabby would say, when she was just on, she would say that different doesn't mean bad, right? That's what she's trying to communicate as an advocate. So what would you say from a medical standpoint, like different does not mean necessarily a bad thing? Butter: Exactly. I sometimes tell families that autism isn't simply about behaving differently. It's about experiencing the world differently. If the world feels louder, less predictable, harder to interpret, or more difficult to communicate within, then the behaviors we notice begin to make much more sense. And sometimes if those behaviors are preventing you from being in a classroom or going to church or going the mall, playing with friends in the neighborhood, then... It's not that they're bad, but it does mean that your world is smaller and your parents, you yourself, might want your world to be bigger than that. And so coping with those neurodevelopmental differences and how your brain is developed and helping you have a fuller and richer and more open life should be the goal of treatment and intervention. Juravich: Can you tell us more about the origins when it first came to the attention of medical doctors and how the medical field has evolved in understanding? Butter: Yeah. I think that's really important. You know, when I first started my career 30 years ago, autism was a narrower thing. It was clearly a clinical diagnosis for kids that were significantly impacted with and inability to communicate, very minimal verbal skills. Communication was through behavior. Behaviors were observed to be repetitive and significantly restricted. Play was circumscribed in young kids. Social relationships were minimal. That was the most classic form of autism that was first identified. But almost in parallel in other places in the world, another form of neurodivergence was being discovered. Now we didn't have that term back then, But at the same time that A doctor named Leo Kanner was defining the autism I just described. Hans Osberger was describing an autism of someone who could be highly intelligent, very verbal, communicate. The old term we used to use was like a little professor. And those two people, and I think like your first guest said, the spectrum is wide, sit on the same spectrum and sit in the same diagnostic category. And so, in that way, I think autism is so commonly misunderstood because it's not one thing. And there isn't one cause, and thus there also isn't way to approach treatment, intervention, and support. Juravich: Does it need, from your perspective, a medical wise, does it need more words and more names, or is it okay that it's all under this one umbrella? Butter: You know, I think there have been pendulum swings in the field, recognizing that there is value to looking at it both ways. You know I'm gonna be the typical psychologist and tell you it depends. You know there isn't one gene that causes autism, but there are thousands of genes that influence how we communicate and how we socialize. And if you think about that exponentially, and the different ways in which we grow and develop the way our genomes are expressed, the ways that we can change how our brains function based upon what we do in real life. As the poet said, I am multitudes. And a person with autism is also multitudes and there is value to lumping, putting this all together in one diagnostic category because it helps us understand different expressions of potentially the same underlying psychopathology or psychophysiology, the pathology that is causing autism, whatever that might be or the difference that. That might be sort of being expressed in a person with autism. On the other hand, if that is lumping everybody together into one diagnostic category, there's also value to splitting because what someone who can complete whatever educational goals they set for themselves, wanna graduate from high school, wanna graduate college, wanna get a doctoral degree, wanna go to med school, wanna be a lawyer, they can complete that, they can be successful in life. They can get and hold down a job that they value and love. They can build relationships, fall in love, build a family. That person is necessarily very different than someone who cannot do those things independently and who will always be dependent upon their family, their parents, their siblings, and other people in their lives to help take care of them and to help them be safe. Juravich: So, in that instance, I could see there needing to be two different names, like if you need to be taken care of and helped for the rest of your life versus being able to live independently on your own and run your own business, those are two different people. Butter: Exactly. There is value to the splitting of these different kinds of expressions of neurodivergence. Juravich: This is All Sides on 89.7 NPR News. We're talking about children and autism with Dr. Eric Booter, chief of psychology at Nationwide Children's Hospital. What about the, like, how would you respond to the criticisms about over-diagnosing now? Because it seems like there's a lot more diagnosis of autism, and I don't know if it's just because we know more about it or there's better tests, but what do you say whenever someone says to you that there's too many people being diagnosed with autism? Butter: Yeah, for me, I value listening to people's experience. When a child gets diagnosed, or a person gets diagnosed with autism, not just because their parent is worried, this might be where it starts, but there's usually a pediatrician, a teacher, there's also a grandparent, a neighbor. There are lots of other people in a child's life who are concerned. And a lot of times families, Though they might notice something different They're just going through their everyday experience of trying to raise their children, their family, you know, put food on the table and have a good life. But when someone else brings up that alarm, they come and see people like me. And they come into our clinics at Children's for support and diagnosis evaluation, diagnostic evaluations. So it usually isn't just one person raising their hand and saying, I think my child has autism or. In the case of adults pursuing evaluation. They've gotten feedback all their lives about their difference They know there's a disconnect. You heard your previous guest talk about masking she knows how hard she has to work in social settings to meet the expectations that other people have for her. So I trust families and a pediatrician has seen a child grow, teachers that have spent hours and hours and days and days and days with the kid before they come see me. But then what I bring to the table and what my faculty and staff bring to the table is the expertise in evaluating autism, experience in doing it. Sorting through the differences between autism and other potential explanations for the differences that other people are noticing So I I don't I don't open the conversation by responding to, there's an overdiagnostic problem. I do talk about that this is hard to diagnose. It does take a careful evaluation. There's no blood test, there's no brain scan that we can do that can tell us definitively a child has autism. It is a complicated and multifaceted evaluation process for us to come up with our best conclusion. It is still a clinical diagnosis. And it's hard because just like There's one cancer, but yet many different kinds of cancers and many different ways to treat cancers. We can at once say there's one autism, but there are many different expressions and kinds of autism and many different ways that we would treat it. And so therefore, I encourage everyone to keep an open mind and really pursue the complexity. And not, if you're going after the question, does this child or does this person have autism or not, I think it's the wrong question. I think you should be pursuing. A goal of trying to understand this person, understand the differences that they're experiencing, other people are experiencing with them in real life, and then decide what is the best way to characterize that and help this person. And sometimes, and a lot of times, it will be an autism diagnosis. Juravich: It was long thought that boys were more likely to be diagnosed than girls. Is that still the case? Does one gender have experienced more autism than another? Butter: Yeah, our prevalence rates continue to report a higher incidence of autism in boys. At the same time, the last 10 to 15 years of our science and diagnostic evaluation is telling us that we have missed diagnosing generations of girls with autism. As... As you heard your previous guest talking about masking, we see masking more common in girls where there is an ability to want to meet the expectations of others in their environment. And so they've learned and they've been shaped to respond in a certain way and it cover up the symptoms. Boys express themselves more through behavior and girls express themselves potentially through many, many, through withdrawing, being quieter. So there's more to see in younger boys than there is often in younger girls. And especially if we have those gender stereotypes in our head that I just described. Yeah. As parents, we will be less likely to be our grandparents or teachers or even physicians in primary care settings. Are we know are historically less likely to refer a girl because she isn't exhibiting the same kinds of behaviors that a boy is. Our diagnostic tests have also been viewed as potentially biasing a positive diagnosis toward boys and biasing a negative diagnosis toward girls. Just the kind of materials that we use, you know, toys that are more familiar to boys and not familiar to girls, for instance. And so those are all things that in the field that we've been trying to address for the last 10 to 15 years as we became aware of this. Juravich: And tell me about what Gabby mentioned. She's doing advocacy work because the testing is expensive. I mean, is the testing covered by insurance? I'm not sure if she was talking about the same tests that insurance would cover. Yeah. Butter: Yeah, I think when, especially when we're talking about pediatrics, generally speaking, our Medicaid providers, our commercial insurance companies will generally approve an evaluation process for autism, for an autism assessment. Of course, all the things hold for our families experiencing challenges with insurance, being to pay your premium, being able to. Have the kind of coverage that you need to get all the services that you needed. But, you know, our goal is to make sure that every child that needs an evaluation gets an evaluation and. Juravich: Maybe she was referring to, is it harder to get insurance to cover a test in an adult? Butter: I believe it is. And that's exactly where I was gonna go. As I was listening to her story, I suspect it is much more challenging and there are a few providers who are doing this work with adults. And so you end up in a situation where you are potentially going to a provider who could make the diagnosis, but who wants their fees paid ahead of time, rather than wants themselves to wrangle with the insurance company. And that just a very different dynamic than working with a large health system and working in pediatrics. Mm-hmm. Juravich: Just to end on, I wanted to talk about in terms of intervention. Schools have definitely made changes to accommodate students who are neurodivergent. Is enough being done? Are we doing enough in schools? Is it too much on the parents? Is it everybody needs to be involved? Butter: Yeah, it is definitely all hands on deck. Everyone needs to be involved. We need to build neuro-affirming, neurodivergent affirming communities in schools and outside of school. Again, across my nearly 30 year career, I have seen vast improvements in how schools are approaching kids with autism, but I'm also a very aspirational person. We can always do better. I tell my faculty and staff at Nationwide Children's, We, you know. We may be number one in the country in behavioral health, but we got to get better. We got to better every day. And so I would say the same thing, too. And the best schools out there know that. They are continuing to work to improve what they're doing, creating more inclusive environments, responding to bullying when it's seen. In so many ways, autism is not a social disability, but it's a learning disability. It's an inability to pick up or a different. Way in which people are picking up information from their environments. And schools are a learning environment. And so persistently asking yourself, do you have the right curriculums? Do you have right teaching methods? Do you the right classroom structure? I think is just good educational practice. Juravich: We've been talking about children and autism with Dr. Eric Booter, chief of psychology at Nationwide Children's Hospital. Thank you so much for your time today. Butter: Great. Thanks for having me. Juravich: And coming up, we're going to talk with the chief science officer for Autism Speaks. That's a national advocacy group. That is when All Sides continues on 89.7 NPR News. You're listening to All Sides. I'm your host, Amy Juravich. Autism, it's been misunderstood, misdiagnosed in the subject of a great deal of misinformation. Today, we're learning more about it. We just heard from Dr. Buder from Nationwide Children's Hospital talking about children and autism. Now we're gonna learn more about autism in adults, along with advocacy work at the national level. Joining us now is Dr. Andy Shih. Chief Science Officer at Autism Speaks, where he oversees the organization's science portfolio, including research, public health, and clinical programs. Welcome to All Sides, Dr. Shih. Dr. Andy Shih: Thank you for having me, Amy. Juravich: So you're a molecular biologist by training. You've spent two decades advancing autism research and evidence-based care in the US and around the world. So, I mean, this is gonna be a big question, but in those 20 years, what have you seen as the biggest advances in the field? Shih: Yeah, thank you so much. You know, I think in the past one year, we have learned a lot about autism, right? I mean, I remember when I first entered this community, we knew very little about, you know, what it is, who's more likely to have it. More importantly, what do you do to support, better support children and family affected by autism. I think, you now, 20 years since then, you know we have learn a lot more about how to be helpful, how to supportive. To see children and adults as well as their family over the time. So I would say that's the biggest, you know, progress that's been made today in this area. Juravich: What do we still not know? I mean, if you could wave your magic research wand and figure it out, what do you want to know? Shih: I would love to know what happens to autistic people as they age, right? We know very little about that. I think historically autism research and services has been focused on early childhood or pediatrics maybe a decade ago. There's a collective awareness that, oh, you know, these children do grow up. And so they started more investment thinking about transition adulthood and as well as young adulthood. But you know, like the rest of us, they also grow old, right? And they age. And I would argue that we know almost nothing about what their needs are and how do we best support them in those contexts. Juravich: Well, when it comes to adults with autism, does it present differently? Because we just spent a lot of time talking about how it is a spectrum and it can vary so widely from child to child, but it also varies wildly from adult to adult, right? Shih: That's correct. I think, you know, largely, I think our understanding is that I think the core differences remain the same, you know, social communication challenges, some repetitive behaviors and so on. But at least especially for those with more verbal skills, they have also learned how to mask it better, right? So they can be more included in various social essentially adjusting their own behavior and presentations. So that they can be better accommodated. And I think in general, you know, autism adulthood faces similar challenges that they face in childhood, but maybe even more, right? We know that adults with autism, we have reports, have experienced higher rates of mental health challenges as far as physical ailments. And that's something that I think often speaks to really focusing on trying to better understand. Juravich: I was just talking with Dr. Booter from Nationwide Children's Hospital about whether there needs to be more words for autism. Like autism is the big umbrella, it's a spectrum, but it can vary so wildly from needing help for the rest of your life, having like a family member or someone take care of you, to being completely independent on your own. We had a guest on in our first segment who owns her own business, right? So do you wish, I mean, you are, you were with Autism Speaks, the nationwide organization. Do you wish there were more words, or do you? Is it okay that it's a spectrum? Shih: I think the emphasis really should be on how do we really make sure that the need is served in support of everyone on the spectrum, no matter where you sit, whether you have a full-time job and you have family and so on, to someone who may need 24-7 care, is that the focus really should that these individuals get what they need in order to have the thriving a life and independent, happy life, rewarding life, right? I think at the end of the day, like the rest of us, I think that's what they deserve and that's we're trying to support and facilitate. Juravich: The Autism CARES Act, CARES stands for Collaboration, Accountability, Research, Education, and Support. So the CARES act is the primary source for federal funding for autism research. Autism Speaks worked with Congress to renew and expand. There was bipartisan legislation in 2024. How much money, do you know how much money is dedicated by the federal government for autism, research? Shih: Yeah, the CARES Act is really a foundational piece of legislation for our community, right? Since it was first passed in 2006, I think it has provided over $5 billion in federal support for research, services, surveillance, training, and so on and so forth. Pretty much all the activities that are important for our communities that deliver immediate and direct benefits to our community are resourced by that particular piece of legislation. And I think the 2024 reauthorization was actually a watershed moment for our community because it really represents a shift or evolution in the priorities the community has articulated over time. And that, you know, the emphasis on lifespan support, what happens, how do we best support autistic people as they age is certainly a priority. Adult outcome, you now, health outcomes, should I think that we previously had not really seriously considered. And, but these are obviously extremely important to our Cisca daughters and their family. Juravich: This is All Sides on 89.7 NPR News. We're talking about understanding autism with Dr. Andy Schor, Chief Science Officer with Autism Speaks. In 2025, the Trump administration made some controversial statements about what causes autism. And I wanted to ask you about that. The link between acetaminophen, you know, Tylenol by brand name, and autism. Is there any link? I know it's been disproven, but what does your organization say when you hear things like this still happening from the federal administration? Shih: Yeah, I think there really is a need for, you know, better access to accurate and current information about autism, autism research. I think this whole incident over salaminophen or Tylenol is unfortunate because oftentimes what community learns about is only one-sided, doesn't really learn the complete story. So as you all know, you now, after the initial story broke, there was a deeper dive into research and understanding the background. That inform the story. And there's a recognition that there were actually even more robust research that had been done that actually disproved the connection between Tylenol and autism. So I think we can all do, especially organizations like Autism Speaks, as well as the media can do a better job to make sure that our community are really receiving the complete information. Juravich: Yeah. Shih: That's available. Juravich: But I guess it's just like grasping at straws, wanting to know what causes autism so we can stop it or change it or something like that. But if it's such a wide spectrum, I mean, will we ever really know what cause autism? Shih: Yeah, we know that autism can occur through very variety of means. In many ways, it's like other common conditions like heart disease and diabetes. There's very mechanisms that can reach to a state where intervention or medical support may be needed. But I think in autism, the complexity has been a central barriers to understanding and to better serve our community. And that's why, you know, as often speak, I think there's a growing push, as well as in the general scientific community, to think about precision healthcare for our community. As you know the rest of the world is moving in that direction. We're trying to personalize medicine, right? Based on individual profiles and social conditions and so on and so forth. Our community deserves the same, right. And I think in some ways, if we can really start to think about how do we deliver precision healthcare. To the autistic adults and autistic children in our community can help address the great disparity in needs as well as access to care that we currently face. Juravich: The president also said in 2025 there's been a meteoric rise in autism and it called it among the most alarming public health developments in history. What are your thoughts on that statement when people like the president and others say that there's so much more diagnosis of it now. Shih: Yeah, you know, fortunately, I mean, I think the community we have reinvested in significant amount of research and issue prevalence over the years, you know, millions of dollars have been invested in this topic. CDC continue to do surveillance. And we have a pretty good sense that, you know, most of the dramatic increase that we've seen over the past 20 years are due to certainly better awareness, the fact that we have now standardized tools to assess autism that wasn't there 20 years ago, that better sense of doctors, now, clinicians. Are more confident in assessing, identifying autism in their community. I think these are all contributing to the rise that we're seeing at this point. And I think the important thing is really to really look past the rising numbers in our community and really think about what happens after they're identified? What happens after their diagnosed? Do we have the necessary resources and programs and services to properly support them so that they can really thrive? Like everybody else. So I think that's really where the focus should be. And I think, again, that's where the 2024 reauthorization of the CARES Act, the emphasis has really shifted to flowing well being. Juravich: Has the money stayed consistent in federal funding? Did that 2024, does it hold, or has there been a change in funding in the current administration? Shih: Yeah, I think, you know, this is an interesting question, you know, because I think federal funding leads for research has been consistent in terms of the pattern is allocation. What we've seen is that over the past couple of decades, majority research has gone into foundational research, such as biology and, and causes and so on and so forth. Now, obviously, those are hugely important questions that need to be answered for our community to make progress. And many of the changes that we've seen in our community these are really being derived from those foundational understanding. However, it takes a long time for foundational research because scientists translate into tangible solutions, meaningful program for members of our community. So I think, and this is articulated in the CARES Act 2024 as well, is that much more effort need to be going into thinking about how do we translate these foundational understanding into tangible solution. For our community in the short term, now, not 20 years later. Juravich: Talk to me a little bit more about the adult portion, because we were talking about how there's much more diagnosis for children because the testing has gotten better and it's covered by insurance for children. But if an adult feels like it was missed when they were a kid and they want to take the test as an adult, is that covered by insurance to figure it out as an adults? Shih: Uh, in most cases not, but you know, in some cases they are so, um, but I think the idea is that there are more, more, people now seeking adult diagnosis for many of them. You know, he actually explains a lot of their life experiences and it's ended up being a net positive for them overall. Um, but, I think that, you know just like what I've said earlier in the program, having this increase in adult odds and diagnosis is a good thing. But we also need to make sure that we had the proper services and support, you know for them You know, especially given the variety of of needs in our community. Let me just take medical care for example, right? So we know that You know it has been a journey for us in the pediatric community over the past 20 years Do you really help the pediatric committee understand how do you identify and how do better support all those children their family? That's that knowledge and expertise does not by and large, not exist in adult medicine community, right? Because if you ask your average adult clinician, adult service provider, how many autistic patients are you treating? Most of them will not really know, right. And furthermore, if you are treating autistic patients, are you adjusting in your procedures and processes to better accommodate their differences so that you can deliver a similarly high quality of care as you do with everybody else? And most of them will probably say I haven't really thought about that. I think that really points to a really huge unending for our community, right? The quality of cares of autistic adult that's being experienced, that's been delivered at this point, it's just not up to par. And as a result, what we see is that we do have a shorter life expectancy in general that has been demonstrated over and over in various research. We have a higher risk for chronic conditions, such as diabetes, heart disease. And, you know, more alarmingly recently, a condition like dementia in Parkinson's seems to have elevated risk in adult population as well. And, all these are urgent issues that currently don't have answers for, but we're very hopeful that the 2024 Reauthorization of CARES Act will provide the resources just as far as to restart to systematically rigorously examine these issues. Juravich: We've been talking about understanding autism with Dr. Andy Shih, Chief Science Officer with Autism Speaks. Thank you so much for joining us today. Thank you for having me. You've been listening to All Sides on 89.7 NPR News. If you missed any part of today's show, listen back at our website. That's www.osu.org slash All Sides or subscribe to the All Sides podcast. And you can also like the show on Facebook or follow the show Instagram. Our Instagram handle is at All Sides WOSU. Thanks for listening. I'm Amy Juravich. This is All Sides on 89.7 NPR News.