 Okay. Good evening, everybody. Welcome to Autism Awareness Week at Bed for Playhouse. My name is Dan. I am the Director of Development Programming for the Bed for Playhouse. And we have a great program today. It's kicking things off. Autism 101 with Dr. Stephen Canny. Hello, Dr. I just want to mention, before we start, that for those of you who are still not quite up to speed on how to use Zoom at this point, shame on you first of all, but you are welcome to ask questions at any time during the program using the Q&A button, which if you are on your laptop or on your PC should be at the bottom of your screen. And feel free. Also, if you're on your iPad or phone, I believe it's at the top of your screen. And you can post questions at any point during the conversation, and we will have a little Q&A session coming up at the end of the program. Also, I should mention that Bed for Playhouse is a 511C3 nonprofit organization. So if you enjoy tonight's program and you'd like to see us do more like it, please consider visiting our website, which is bedforplayhouse.org, and making a contribution to help bring this type of programming. We really can't do it without your help. We are hoping to reopen. Our scheduled reopening date is May 28th next month. So in the meantime, we are doing a lot of virtual programming. Our cafe and bar are open on weekends. You can find the specials, the weekend specials on our website as well. Let me introduce our special guest. Dr. Canny is the director of the Center for Autism and the Developing Brain at Wild Point Elementary School. His current research interests focus on children with autism, targeting diagnostic tools, outcome measures, behavioral phenotyping, co-occurring symptoms, evidence-based therapies, and sub-threshold symptoms. In addition to publishing in the areas of autism, Dr. Canny has also published in the areas of cognitive neuropsychology, history of neuropsychology, and pediatric traumatic brain injury. Dr. Canny is board certified in clinical neuropsychology. He also looks to teach and train, and he does workshops nationally and internationally on autism. We are very, very happy to have Dr. Canny here with us. And it is your show, sir. Well, thank you. First of all, I wanted to say thank you to the Bedford Playhouse for inviting me to give the talk. I absolutely love giving these talks to the community. And the talk I'm giving tonight is really designed to just go over the kind of basics of autism because we often get questions about, you know, what is it? How do you diagnose it? There's so much out there in the media about autism, different TV shows, different movies, just the history of it that people have lots of questions. So we just wanted to like give a talk that kind of said, you're the basics of kind of what we know now. So I'm going to share my screen now. And then switch it over to the right slide. So hopefully you're all seeing the correct slide right now, which is just the first one. So this is, you know, it's called Autism 101 where it really is just what, you know, what are we doing now in terms of the current diagnostic practices and how we do treatment approaches. And, you know, the talk tonight really is designed more for just a kind of broad sweeping view. So I plan on giving 15, 20 minutes at the end to try to answer any questions that come up. Because when I've given these talks in the past, we often get questions from the audience, just general ones about like, what is this and what should we look for that type of stuff. When you see there's a line drawing, I'm actually new here to Cornell. I started here back in August came from the middle of Missouri where I ran an autism center there. There's a line drawing of our building, which is a conversion museum. It's absolutely beautiful. The architect who designed it made it very autism friendly in here. So it's a beautiful space that we currently reside in here at our center. So the first really basic question is what is autism. We call it a spectrum now autism spectrum disorder. Just to be clear about what we know about it, we know that it's a neurodevelopmental disorder, meaning it affects a child or an adult's brain functioning. It occurs very early in life, either pre or postnatally. It's not something you catch when you're three or four years old. You're typically born with it. And if you're diagnosed with it, you clearly have developmental consequences that are associated with it, meaning it affects how a person develops. And how we market the disorder is the symptoms themselves that we look for really manifest themselves in two basic areas, which are how does a person communicate socially? And what are these different types of behaviors? How do they react to their environment that's a little bit different than other people might? And we're going to go over those in more detail so you get a much clearer picture of what those two things are. There's another spectrum and I read this really interesting article. There's a big movement now in a very appropriate one in neurodiversity where we want to make sure people understand that as a spectrum, it's not a linear spectrum. I mean, we don't want to think of high functioning versus low function. It's really a false way to think about autism. It really is a myriad of different symptoms that can present themselves very differently in each individual. It's not like you're at this level or you're a six or you're a 10. It's really not that at all. It's more like just a wide variety of how these symptoms can present themselves. And that's why I really enjoy working in this field because people who have autism, their symptoms can vary from very not severe at all to very severe. So a lot of symptoms, the same symptoms, you know, I can see a child at age two who looks very, very different when I see that same child again at age four or five. Not only that, but if I'm evaluating someone for a question of autism, I have no idea how they're going to present to me in clinic except for these core symptoms, meaning like autism looks different across every single individual that presents themselves to me both in terms of the strengths they present with, but also the challenges that they might have that would actually support a diagnosis of autism. So most of my work just so you know I'm a clinical pediatric neuropsychologist, most of my clinical work is as a diagnostician, meaning seeing lots and lots of kids for a question of do you have autism or not. I love this slide because there's so much in this one slide. And, you know, when people look at this like, oh my gosh, you know, 10 15 years ago, autism wasn't really much of a thing so if you look at there was like one in 250 and 2001 one in 575. What is happening is there's something in the water that we're drinking that's causing autism. And we don't really think that the prevalence is increasing where actually this slide is already outdated it's actually one in 54 now. And I think the reason why it's changing the incidents itself of autism we don't think is changing it's the prevalence of it. By that we mean what we used to define autism as was like a barrel this big. But now we think of autism as a barrel this big. So we really define autism in a much broader sense. So there are kids and adults, you know, 15 years ago that we wouldn't have recognized had autism. I'll return this later but I guarantee you there are people that you probably interact with maybe a coworker a friend, who was just very different in the way they approached the world and saw the world, they might have had autism depending on how much they struggle with the challenges that they faced. Unfortunately, there really isn't a biological test, or cure for autism. I know when I say that it can sound very disheartening, meaning there's no cure for autism. Why do we have what we have a ton of hope. This means right now the state of science that we're in, we actually diagnose autism through its behavioral symptoms. And we have a firm belief grounded in lots of evidence that it's a genetic disorder, meaning you're born with it in your genes. So right now we don't have genetic cures. So, but much like everything else, you know, if you're born with a specific genetic, whatever that causes a speech problem, you could go to a speech therapist and actually overcome your speech deficits where no one could recognize that you have that. That's true in autism to it doesn't make sure it doesn't necessarily get rid of autism, but you can do a ton of different things to help ameliorate the symptoms of autism, such that that in many cases sometimes you can't even tell. But also this is a very serious thing this is what I really want to get across to people. We tend to romanticize autism sometimes in the media. It's a very important with tons of families and it's incredibly difficult to deal with just for the financial burdens alone. It can cost up to $60,000 a year, and that's without some co-occurring symptoms even more so if they have co-occurring symptoms so it's very, it can be very important for the family to understand and appreciate like how impactful this order can be. And it really is an equal opportunity to sort of meaning we see it pretty much equally in terms of incidents and prevalence across all racial and ethnic groups wherever we looked. The overall incidence is about a little bit more than 1% is the way we think about it. And it's always seem to be that way throughout all the history. It's just we're changing how we actually conceptualize the diagnosis. So the DSM-5 if you're not aware this is the diagnostic kind of manual that we use that is very much a cultural document because it can change over time. But it's how we currently define and diagnose the disorder, meaning people have to show these particular patterns of different difficulties for us to diagnose it. And just to be really clear, I always like to give this caveat when I'm talking to more community type members. To be diagnosed with something like, even if you had, everyone has anxiety, but to be diagnosed with anxiety disorder, that means it's significantly impacting your functioning on a day-to-day basis. The same thing for autism, you know, if you go through these symptoms, we all are probably somewhere on the autism spectrum, we all have some symptoms of autism somewhere. Yet it's when they actually occur to the degree that they're impairing your functioning, that's when you're going to get a diagnosis of it. So what we look for are the two main areas. We need to have deficits in social communication. And this area called restricted and repetitive behaviors. So we're going to go over those, what those look like. But in addition to that, they have to be present early childhood. So again, it's not something you catch when you're five or six. They have to, as I just noted, cause clinically significant impairment in your functioning. And the last one they put in, because a lot of people, you know, if someone has a significant intellectual disability, oftentimes you see impairments that can overlap with or look a lot like autism. And so we, that's a very kind of tough diagnostic question to ask, but because you can have both intellectual disability and autism. But you really have to figure it out. Is it only an intellectual disability or is autism present as well. So you really have to make sure that the symptoms can't be explained by an intellectual disability. So we need three in the area. If you remember back at this slide, three deficits in the area of social communication, social interaction. So we're going to go through those three, what they look like. So the first thing is, you need to have deficits and social emotional reciprocity. What does that mean? It can range. It can mean, and again, when I go through these, you might laugh because like you've known people who have done this, you might yourself have had an abnormal social approach. It's the inability to really understand how to interact with people appropriately. Like there's this deficit in your ability to know how to do so. So it might be you approach people abnormally, you might hug a stranger. One of the big ones is this failure of this normal back and forth conversation. So it's a true inability. We call it pragmatic language. They may talk at you as we talk about it. It's like, like, and again, you might have met people like this where you can't get a word in edgewise. Well, this is not on steroids, where they only, they don't answer you or they only talk about their top part of the conversation. They never had that ping pong match back and forth of a conversation. Another part of this is a reduced sharing of interests. So, you know, as a younger kid, this might be taking the playground and children with autism aren't usually like looking at the other kids on the playground sometime, you know, depending on how the autism presents. And where, you know, kids who don't have autism might be looking around other kids in the playground and see what they're doing being curious and want to run up to other kids and join in. So that's kind of what we see because it'd be like just a child that is often doesn't share interest with their parents. They don't come home and show the cool thing they made at school or they're not able to show their emotions very well or they can't share when they're excited or let you know it's it's really hard to read them. And the more extreme level we have kids who who they don't initiate or respond to social interactions at all. So it's almost like they have these big, you know, Star Trek shields around them where nothing can get in and they're in their own little world is what we call that. And it's, it's quite striking when they have that level of social emotional reciprocity deficits. The second area that we look for are difficulties and non verbals. And this is interesting because you probably heard all the like trite comments about 80% of our communications non verbal it's kind of true. And you'd be surprised how many non verbal things that you do even when I'm talking to you I'm using my hands my eyebrows are moving my facial expressions change. I have a lot of difficulty with this, where sometimes their facial expressions are very flat. That's one of the biggest things that we might see is they go, they might have smiles and they might have frowns or crying, but all the subtle facial expressions, they're just not there so it's kind of hard to read them. They might have a failure to develop pointing appropriately gesturing is kind of inappropriate. One of the big ones that you hear a lot about his eye contact. And yet we do see a lot of abnormal eye contact I think people get that wrong a lot because it's not just that they don't make eye contact. Actually, sometimes the opposite sometimes make too intense eye contact for too long. Well we really look for there is an inability to socially modulate your eye contact. Think around when you're in a conversation with someone or if you're in a social setting, how people will use their eyes to use them socially to check in on other people's faces or to make sure you're paying attention. That's what we're looking for here. The third area in this social communication area is really this inability or difficulty in developing and maintaining relationships, and this could be friendships, this could be more romantic relationships. When their kids it could be difficulty making and keeping friends. And at a very more basic level, it's difficulty in even engaging an imaginative play because sometimes some of our kids are so concrete they can't imagine that this stick is a sword it's just a stick why would I pretend it's a sword that's silly. At the very, very, again, more severe end. It's a complete absence of interest in peers or friends. You can see from these past three slides that it really is a range, even within each of these different dimensions there can be a range, and they have to be all three of these, but it can be very severe or can be less severe depending on the child so you can already see the range of different children or adults that can present ourselves to present themselves to us that might have autism. The basic area is is restricted repetitive behaviors. These are the things that if you see them, you know, typically they just they strike you as very much more atypical, when a person shows them. So, as you can see in the picture that the child's posturing and looking up at the same time it's a very striking pose. Again, you can't tell anything from a photograph but that's a child that we did capture, but it can be like hand flapping could be finger wiggling so you somewhere kids flap their hands when they get excited. You can see kids line up their toys. Now again, what we have to be clear is all kids line up their toys during development so don't think oh my gosh my kids learning other toys they might have autism it's not that it's that is the main way that they play though is they don't play at the toys as a toy. They play at the toys by lining them up or just flipping an object around or just inspecting the objects they don't really play or use an object the way it's intended. They use it in a different way. Another thing we look for in a very kind of clear ways echolalia is called this is where you repeat what you've heard, just after you've heard it. And it has no, like, if I say, if I use a word or something people don't understand the go did you just say blah blah blah they'll repeat the word that's not what we're talking about. We're talking about when they repeat what you say right after you say it with no semantic or language reason they just do it for repetition. It's very striking when you hear it. And I smile because these can be incredibly poetic and actually accurate, but they're just idiosyncratic and it's like they'll hit your ears they're like most people don't mostly talk like that. So for example we had a kid who, whenever he got anxious would rock back and forth a little bit and say it seems that Thanksgiving is upon us it seems that Thanksgiving is upon us. So what he meant by that was he was watching bear in the big blue house, and bear got very anxious because Thanksgiving is coming and that's what he's used. So this child and use that entire phrase, whenever he got anxious that's what he meant on being I'm getting anxious right now. So it's a very idiosyncratic way of using a phrase. So you can see the lining up of toys in the background there. The reason we put on this slide though is another. You need to be two out of four in this area of repetitive behaviors. One of the four was what we just talked about which was these repetitive kind of lining up in hand flapping type behaviors. This one is called insistence on sameness. And it's again very striking. It's where a child needs to do the same thing. It's very, very insistently, or they have a meltdown. Again, all kids do this at some point right all kids have meltdowns and have bad behavior. This is not that it's like this all the time, where they have to drive the same way to school every day or they'll have a complete meltdown. They have to have the food arranged on their plate in the same way, or they have a meltdown, you have to say something in a very particular way, or they have a meltdown. And quite honestly is one that sneaks by a lot of people, but you can imagine it has the most impact on school on daily functioning, because if they can't be flexible, and you'd be surprised how much flexibility our world requires. They have lots of behavior problems and lots of difficulty. The third area in the repetitive behaviors is restricted or fixated interest or special interest we call them. This is actually one of my areas of research because I just love this area. And again, like there are things that all kids like, which is why they become popular like dinosaurs and Thomas the train or trucks. But this is that again on steroids. It's like the only thing they care about or study about or read about or what toys or what wallpaper or bed spreads about is that topic. Thomas the train everything has to be about Thomas the train so they don't have other interest it consumes all of their interests. And these can even become very unusual. Like we had a kid who I worked with who loved vacuum cleaners, and he was seven. And if you said hi, my name's Susan, he would say oh hi Susan, what kind of vacuum cleaner do you have like that's the first thing that he asked. And he would, by the way, he would get upset if you don't have a Dyson because that's the best kind of vacuum cleaner to him. And he went to your house he would go to your closet and look what kind of vacuum cleaners you have. And he knew every detail about vacuum cleaners that you'd ever want to know. So it's an unusual interest, which is even more striking than something like Thomas the train. So we look for that as well. In the fourth area, which came about in the DSM five. Was this hypo or hyper reactivity to sensory. Now, these days, a lot of people are fixating on sensory stuff with kids with autism, and rightly so. However, if you think about sensory issues, we all have them we all have different sensory responses some of us like tags some of us don't. My wife doesn't like heavy covers. I do. Some people like light some people don't so we there's a normal distribution of sensory issues. This, again, is that on steroids. We see a lot of what we call sensory seeking behaviors that are atypical visual inspection will look out the corner of their eye at something or lay on the ground to watch wheels, or sit there and stare at water dripping for an hour. Or they could be covering their ears as a sensory inversion because they there's even a typical sound that doesn't bother us bothers them. Someone who leans down licks the table to see how it tastes that's just not typical that you see another kid so we really do again look for more of an extreme end of that piece of it as well. I spent a lot of time on this but just for general knowledge. There have been changes. This is about what five years ago I guess now where the DSM for had a different conceptualization where we actually at Asperger's disorder, PDS and autistic. All those were under the umbrella of autism, and in the DSM by they have all become under just termed autism. And a lot of people are upset about that because Asperger's is very meaningful. But if you think about it's like it's just a type of autism is the way we think about it. And three symptoms are down to two now where because you think about it you can't really be social without communication. So it made sense that those collapse into one dimension. This is really important slide to me to just because you might in the center you see this core symptoms which cause you know impairments and autism. But the interesting thing about autism, it hardly ever comes and that's what we just went through all those different criteria. Autism comes with so much more than just this core symptoms. It comes with oftentimes anxiety or depression or intellectual problems, or the inability to take care of themselves in the real world or learning problems. Sometimes gate problems or fine motor issues, sometimes behavioral dysregulation or seizures. So there's always almost always something else that is going on that affects these kids lives and adult lives, even more. You know, if you had to put these in buckets. These are the different types of disorders in terms of cold morbidity that that are considered different from autism, but come with it a lot in terms of like people meet the criteria for this as well. And this next slide is not supposed to be scary but it kind of is, because this is a friend of mine here, Jeremy Vienster Vanderweil is a very famous psychiatrist here. And this is just to show the complexity of what autism is. So you have the genetics involved or learning so much more about the genetics, about, I'd say 30 to 40% of the cases of autism we can now identify the genetic issue. It's not a single gene. It's called a polygenetic disorder. And where we know that there's multiple genes that actually affect common pathways that create the behavioral manifestation of what we're calling autism. But then you have different biomarkers that we're looking for different mental comorbidities behavioral comorbidities, and they all come together to create autism so when I have a child or an adult present to me. It's like do I have autism. This is what I need to keep in my head like what is it amongst all these things. Is it autism or is it just one of a single thing alone. So a lot of our kids with autism and our adults have difficulty with behavior. This is true of kids with intellectual disability well but they're at much higher risk for behavioral problems, like aggression. They, a high percentage of our kids over 50% can engage in acting out behaviors like hitting and kicking others. What's incredibly difficult to watch and see is when they start injuring themselves. I worked in a severe behavior disorder clinic where these kids would hit themselves so hard they detect their own retinas I mean it was, it was frightening what they could do to hurt themselves. They can throw things, you know when they have their meltdowns we really do mean meltdowns, but then they can also go into self stimulation whether I do hand flapping or scripting. So even how all these things, if you're in school or other type of setting sets these kids apart, even more than other kids and creates difficulty with their social interactions. I want to pause for a second on the last one because the, the largest cause of death in autism those diagnosed autism is drowning. A lot that has to do with that last bullet point where a lot of our kids elope, which means that they will even if you like so my parents, both their doors and lock them and even with that the kids will elope and get out of the house. And for some reason they're drawn to bodies of water and don't have a sense of safety. And they'll oftentimes either cross the street that's dangerous or head to a body of water where drowning is a hazard so one thing we work with in communities is encouraging parents of kids who showed these types of symptoms. To make sure first responders know so that when you call the place the first place they go is two bodies of water to make sure that they're safe. Another one that's again incredibly frightening in some ways and concerning is suicidality autism so as our kids get older especially into adolescent age there's a much higher incidence of depression and anxiety in our population. So one of our studies adults with autism were 10 times more likely to die by suicide and Swedish study the population study. And even in here what we see is is more so suicidal elevation in our sample so it's just something you want to keep your ears open for and take it seriously when you hear it can be hard to figure out. So you want to scream for it but a lot of our kids they'll say things and they're very concrete and they don't mean exactly what they're saying so you really do have to figure out what's happening when they make these comments. So there's been a lot of a ton of interest in environmental factors in autism meaning like what's causing this. I mean I'll get lots of parents who are concerned oh my gosh was it that third cup of coffee that I had you know why. And we do know that epigenetics and environmental factors can play a role it's not just straight like are they born with it. I mean that's true of every genetic condition is how the genetics interact with the environment can actually change the manifestation of a disorder. So we know for example there's an increased risk of autism with paternal and maternal age premature babies have a higher risk of having autism. There are some epidemiological studies that do show that certain environmental factors like there's a study in California that showed along the highway system there was a greater risk of autism. What does that mean by the way just to be clear that that toxins cause autism what that means is they interact with the genetics to change the manifestation of the disorder just to be clear about that. And just the strongest evidence you know as a scientist vaccines do not contribute to the risk of autism this has been a battle that we've been fighting for a long time and if you know the history of this you'll know why we get very passionate about it. But there's no evidence that vaccines themselves cause autism. We are though learning a ton about the genetics of autism. You know we hope 10 years ago that we could find a single gene that caused autism that ended up not being the case there isn't a single gene I think we now know about oh maybe 90 to 100 single genes that cause autism. But that's like accounts for I forget like 10 or 15% most of the case of autism or polygenetic meaning a combination of different genes that are working together. But it's a highly genetic disorder and you can see from that bullet point that you know we know that from twin studies that you know the concordance of ASD symptoms is much higher and identical versus fraternal twins. And you know about 93% is the maximum we think the risk is heritable for autism so it's one of the most heritable psychiatric disorders that we know of actually. And again sibling studies if you have one sibling if you have a child autism your chance of having another child autism are much greater just because of the genetics involved. We also know that there's not one single genetic disorder that is is is perfectly penetrating for autism. By that I mean like oh you have this genetic issue, you're going to have a deletion or duplication or a de novo event, you're going to have autism it doesn't work like that. So we find it's different genetic syndromes have a higher incidence of autism. So again, it wasn't as clear as we thought it might be, and not to dive too much and this is not my area so please no one asked me questions about this. But like, I do work with Genesis where there's so many new things that they're studying the field of genetics is expanding so rapidly because of technology and science, but things like copy number variance spontaneous mutations how epigenetics. So epigenetics just let you know, that's when we two people I have the same genetics. But epigenetics are genes that turn on and off other genes, depending on the environment around that is probably the most simplistic explanation. So you can see how that allows the environment to affect your genes, and we do know epigenetics play a role and now your genes but the genes of your, your, your children. You know that plays a role in autism to we're just trying to figure out kind of what is happening in the world of autism genetically, and just to make an analogy like back in the 50s 1950s like, all we know about cancer was the end stage like oh that person has cancer look what it looks like. But with science and years and years of study we thought actually there's like hundreds and hundreds of different kinds of cancer that look many different ways that different genetics associated and respond to different treatments. And we're out with autism, and we're now realizing that it's not a single thing they're not there's not an autism they're autism it's a behavioral presentation has many different genetic pathways to get there. And we're trying to figure out okay what are the genetic pathways, what are the the prognosis associate with them, and what are treatments that we can target based on those, which kind of leads us to the treatment thing what do we do. There's a lot of work with what we have now available to us in terms of, and here at our center we only promote evidence based treatments meaning I will only engage in treatments that have research and evidence behind them that they work. And if you Google autism treatments it's frightening. There's like 400 different treatments that pop up, and it could be this field like many if there's a vacuum of science, people jump in with some people that aren't well intentioned and just want to sell something, or don't have enough science or there's testimonials that say they work and people get on the bandwagon. And I'll be honest if I was a parent of a child with autism I would do anything to help my kid get better and I wouldn't wait. And yet what we want to do from our side of it is say no you know what I would recommend to parents though are treatments that we know work. They might not work for every kid that we're trying to figure out what works best for what kids, but there are certain treatments we know can do a really good job of helping almost every kid. And that's what you see in front of you there. So what you see there is just a really easy graph of evidence based court treatments early intervention that early we get to these kids. We know it will help them. And that's because the brain changes. That's not to say you should not treat people who are older that's now we're saying, we're just saying it's like, think about this way if I was able to help a child when they're three years old. Instead of five, the five year old missed that two years of practicing with other kids and learning how to be social that the the three year old that I treat it can get by the time they're five. The earlier we get to the kids, the better. If you have it in the world of autism heard of a BA applied behavioral analysis. It's one of the most evidence based treatments for autism and one of the most highly recommended. And maybe I got a really bad rap way, I'd say back in the 2000s or so. But I don't want people now to think a BA is the same as it was then. Maybe it was actually like some science that was born the 50s for actually adults with intellectual disabilities. It's really just how using behavioral science to change behavior. And now it's all positive reinforcement based. It's not the type of punishment stuff but it is having seen it work with many, many kids it is unbelievable what it can do and how can change these kids lives. It's now evolving the eight principles are evolving into many other type of therapies like the next one, the natural naturalistic developmental behavioral interventions that incorporate a BA principles but add to them with naturalistic environments and play based therapies and other stuff that have come a long, long way and have evidence now that they're very effective. You know medications there's no drug yet that treats autism core symptoms, but what they do do is treat the other comorbid symptoms that we talked about. If I can dial back ADHD if I can dial back seizures if I can dial back OCD type behaviors. It really helps us then with the other behaviors that we need for autism so medications are often a big part of the treatment for autism. Teachers out of North Carolina it's an entire method of teaching kids and working with them with autism that also incorporates behavioral principles with others. So, when it comes to treating it and as you as you probably got the message autism isn't just one thing right so it's really hard to say this is the one treatment it's going to work for everybody. So, even the behavioral treatments that I talked about have to be very individualized for that patient. So what happened is someone would come to us and we're okay let's do an evaluation find out where their strengths are, because you know, when it comes to autism these kids have tons of strengths that you want to build on those strengths like anything else right if anyone comes to us at once help. Okay what are your strengths where your challenges how can we use the strengths and address your challenges. So it has to be goal driven evidence base, but it really does have to take into account the child and the family along with it. As we know from cove that we've all learned, it's really hard to be a teacher and be a parent, meaning going out to work and do other stuff at the same time. So being able to take to take into account the entire family is very very important. I actually try to get these kids into some type of behavioral interventions as early as possible if we can, but it's never too late so I want to be sure that you understand that too. By the way the problem often is, is driven by like Sally insurance like what is paid for by as a treatment for autism which is very, very sad to me. So social skills, training and social language groups are also very helpful, especially for adolescents and for adults. They just have less kind of evidence behind them they actually are doing as good of a job as a behavioral treatments but there is growing evidence that they do help. So as I said, there are no specific medications that treat the core symptoms of autism. And the pharmacology associated with it is is really, like I said focusing on these comorbid symptoms. So you can see from there there are specific medications that have been approved for autism. What's really interesting to me though is like you look at the ADHD ones those are just standard, your medications that you would give to any child with ADHD. So if you have autism that has ADHD you do want to go to a doctor or psychiatrist that knows autism, because the kids response or the adults response to these meds aren't exactly the same they don't have the same efficacy and they're saying a little bit more nuance than a kid who doesn't have autism. So having someone you can go to that has autism expertise is super important to just to increasing the chance of those drugs are going to work. So three fourths of our kids and adults were on some type of medication last year by one of our studies. And in the US especially it's common that we treat some of these comorbid symptoms with some type of medication. So that's why though to so the way I think about it is like internal and external you know if we use the medication to kind of dial things back. We're going to focus on behavioral treatments because we have found those to be very effective for improving the skills that the kids need to be approved, but they're actually reducing some of these other challenging behaviors that we see earlier the better. Almost every study shows that they're earlier we can get them in the better. So that thing is right to this point we still haven't used or some medications that we're actually looking at to see if they're effective in treating core autism like oxytocin others but nothing unfortunately is really panning out from the research side. So we talked about a via I'm not going to go in depth in this I have a couple slides and I'm going to kind of blow through them kind of fast. And otherwise, if you've heard about this, it really isn't a single technique it's a family of techniques. And, you know, without actually going into too much detail on the slides. What I'm going to get to this slide here, here we go. You all have done a VA, just not as to the level they do it if you've ever. You know if you ever have a significant other friend or someone your relationship with that did something nice to you. So you give them a gift or flowers or something, you're practicing a VA. You're saying here's a positive behavior I'm going to reinforce it so it increases the chances of that positive behavior again. What do you do when something bad happens, you know that your partner your significant other your friend does that you don't like you ignore it. If you ignore it long enough, it will go away because they're not getting reinforced. That's the basic behavioral principles of a VA. The difference is that they bring it to a level of science. And it really is incredibly impressive if you see that it looks like they're just playing with the kids, but they actually do what's called a functional behavioral analysis first to see what is the function of the behavior. If you target that try different things actually they have grass that track how that behavior goes up or down. And if you've ever even tried to get your child to, you know, baby to stop crying through the night, or having your child go to bed at the right time. You know what we're talking about this can be very difficult seems easy. It's not. So having professionals that are licensed and have lots of ability to do this, and our talented is extremely powerful thing. And that's why a VA has become one of the most successful ways to treat autism. We only have a couple more sizes one end on it to me one of the most important kind of aspects of our job here. Because you know, our, to be clear, our patient is the child or the adult that that possibly or does have autism, but it doesn't happen in a vacuum. And what you find is you really do have to think about the effect and the impact on families. You know, if you think about it, if you have a child autism was any type of special needs. How do you tend to another child children near home with other siblings, you're paying less attention to them because you're paying more attention to this child's needs. How do these tantrums affect the whole family if you ever had a kid who has significant tantrums every time you bring them to Walmart, or to a restaurant, you know what that feels like, you don't you stop going to restaurants. So when they start, sure when they're young two years old, you can stop the aggression but what about when they're eight or nine, suddenly there, it hurts a lot more because they're a lot bigger and stronger. I had a family who the kid only slept two hours a night for the first five years can you imagine that. So you're losing sleep you have to navigate the medical issues seizure disorders. And I guarantee you almost everyone has their own opinion and criticism. There's always so and so says I just think of or they have a friend over here it says like why aren't you discipline like this and the teacher says they don't have autism. So, oh my gosh you get advice from everyone these families are bombarded with all these different stressors from everywhere. What about the family apparent themselves you worry about what the future what happens if I leave what's going to happen when I pass away what about my child on the friends all of our families lose friends because of their focus on the child autism. It takes it as I told you an enormous amount of money. It's a whole IEP system like the SSI you have to navigate all these new systems of care and worried about your child running out the front door anytime so it is just you can imagine how incredibly stressful it is so the one thing we're focused on here is creating what we call medical home or a health based home or autism medical home, where it really is it's it's about the patient, but it has to be more than that has to be about the whole family. We have to it's not just just your child as autism or not and I get very passionate to about like just the diagnostic question, because it's not just about the diagnostic question is about how do we help. How do we make the child, you know, do their best they can in life. How do we coordinate things across all these different professionals. How do we do so in a way that is highest quality and equitably so so across financial spectrums and racial spectrums. How do we make sure we access, you know, have access to our care as much as possible, kind of a difficult, you know, mission to have it something we're all committed to here. My last slide just to show you kind of our center it's on a beautiful 200 acre campus here at Westchester, and they convert the gymnasium to an autism center they had a specialist come in who was an architect and made it very autism friendly so with the colors it's like a little if you look on the inside little village every room is a little house. So what I love about this is, is our mission is baked into our building meaning like if you look at our building you'll understand what our mission is. All right, so I kind of blew through that pretty quickly and there's a lot of information, but I wanted to make sure that about maybe 15 minutes or so to answer whatever questions you might have so let me stop sharing my screen and Okay, well we actually have some a lot of really good questions teed up so let's get right to them. The first one. I want to make sure I read this correctly. In your estimation, what percentage of autism cases are initially misdiagnosed as other conditions. Great question. I think it really depends. I know I saw your politician now I've been watching so much politics I've learned how to answer questions very evasively. I don't mean to do that. The autism because of behavioral diagnosis. The problem is I think initially depend if you don't go to the right specialist that you find it's misdiagnosed more often meaning a lot of people miss it. It's because they just, you know, a pediatrician who doesn't know autism very well. I've heard all the stories like oh my gosh don't worry they'll know it's a boy they'll talk later. They got this from their brother. I would. Yeah, and just like any other disorder there are hits and misses false negatives false positive with what we do. You know our diagnostic rate that's what we're getting very good at our diagnostic rate by the age of two is like 90% or over 90% stable as they get older so we're very good at recognizing it. If you get to the right specialist though that's the key right because you get you have to get to someone who knows autism if you don't. You know the rates go much higher in terms of the inaccuracies involved. I get very scared of computer programs and like screen devices that you just answer questions they tell you about autism or not. That's not the way it goes. You know what we look for is very sophisticated in terms of diagnosing autism, and it's history and how we interact with the child and what we do that actually produces the diagnosis. So what related to that. Another question is, does autism pair with other conditions. Yeah, it does. So, well, that I say, let me answer that differently. Autism is not protective of other conditions, meaning like you can have any other condition that anyone might get if you have autism as well. That being said, like we often see like that slide I showed you showed that where it's like, we often see ADHD type symptoms we often see anxiety we also see depression. We often see GI problems we often see seizure disorders so there are much higher rate in our population of kids than in others. Next question is, since we all have differences. Is there a way to see signs that we need to pay attention to it's challenging as a parent to know when and how to look at your own children. Can you talk to that a little bit. Absolutely. It's a great question because like you're right, you know, like we all, as I wanted those symptoms we can all go oh my gosh I might have autism like I love Star Wars that's all I talk about. So, we all have differences and you know part of the world we live in is honoring and respecting those differences and not pathologizing them right now saying, oh my gosh they're weird they must have autism it's not that at all. So there are certain things you know that's why you come to a specialist to say are there are very specific signs and symptoms that we look at that create the diagnosis. And it has to be an impairments not just that someone might be a little bit atypical or a little bit odd that's not what we're looking for. I think we're all, you know children all children are odd by the way every children is weird or odd in some way. And it's a different way though to there was a study that was done that showed that 84% of the time or higher that the mom was concerned there's something wrong with their kid, there was. So, meaning like if you go, you know the moms like oh my gosh I think there's something wrong with little Joey, believe her, go get it evaluated go to a pediatrician do the screening whatever you need to do. Dad's word is good because dad's words primary caretakers and opposite wasn't true when the mom wasn't worried that did not correlate with whether the child had something or not. But what we learned is like, whoever that primary caretaker is their instincts are like there's something going on here, we need to check out listen to them. And you know I see the question to like, what do we look for at certain ages, like, you can look for there's a couple websites like the early signs website you can go for which says, here's what we look for in autism, like if you're starting to see these things and they're to a certain degree, you might want to get them checked out at a higher level of screening. If you're worried even to a greater degree, if you just Google m chat m ch at, there's a free screening that even has a little follow up questions that does a pretty good job of screening for autism or not. And again, if you score in the range it doesn't mean your time does autism. It just means like wow there's enough concerns here, we might want to take it to the next level. I mean, I could go on forever about what I look for at different ages for, you know, like, well, there are certain things that all kids should be doing at certain ages. And if I don't see that, I'm worried. One of the biggest things of course is language. You know if you don't have single words by year 18 months of age and if you're not in phrases by two years of age, you need to have your child checked out, either by language therapist or it could be something else going on like autism. If you start to see always if there's any like going down in anything kids don't regress in abilities they only usually increase. If you ever see a regression and anything, take them to the doctor, whether it be language or social skills or even physical things there's kids shouldn't go down they should continue to go up to a certain age. And then at a specialist level we look for things like when do they smile when do they point when their facial expressions there those types of things so it gets more complicated then. We actually have a couple of questions that are somewhat related. One that was submitted through the q amp a. My brother and ex husband around the spectrum my 23 year old daughter has symptoms, particularly social. She's asked if I think she's on the spectrum. I think she is would it be beneficial to her to get a diagnosis now. And related to that, we had someone submit a question via email, kind of the same thing talking about someone is convinced that their father, who is 74 is on the spectrum, but of course it was unknown when he was young. Is there any, anything that is worth doing anything now at his age. So I guess two different. And so, because we often get asked this by a parent about a child as well so think about this way so in your first question about the two parents who have been identified. You know should they should they encourage a daughter to one thing to reflect on is what did it mean as when the parents themselves got the diagnosis, what did that mean to them. Right, so what I hear a lot from from people who are on the spectrum, and I am not so I can't speak with that voice fully but my anecdotally what I hear is, if there's something going on with you. You know if I'm living my life and I'm running into difficulties, and I don't know why I'm having those difficulties. It's hard to like create all these reasons in your head that are sometimes worse than the real reason. So what I've heard is that if I go to someone, and I find out oh this is the reason why you're feeling that way this is the reason why you're different. It's actually a good thing for them is what I've been told. That's not always the case but I've been told it can be free it's like oh, the reason I have this this these problems socially or whatever is because I have autism it's not because I'm a bad person or my mom did this or it's like there's a reason to having that reason as an organizing principle that can be very beneficial psychologically for people. And then it also gives you a course of treatment right it's like oh if I have this I know what direction to go. The bad side that people think about though is is the, the label, you know, oh gosh I'm going to be set in the category I have a label. And you know this is where you run into people who have you know stigma associated with the word, or like they think everyone thought is like a rain man or something it's like, and that's so not true right so that's the bad side of it though like you get categorized as something. You know I think the world is becoming more aware of the spectrum and kind of the neuro diversity that goes with it. I mean, and this is my opinion only, I would think there's more benefit than less to be diagnosed and to have it checked out. Because a lot of people have symptoms are, especially if you have relatives that have autism, you might have symptoms but not meet the diagnostic criteria for autism. And the question then becomes like, well wait is it impairing you though, because you know you can have, you can have all the symptoms in the world but doing finds, who cares. You know it doesn't affect you at all but if it's impairing you somewhere, and hurting you, or hurting your ability to be the best you, then yeah, like get it checked out and find out if that's what it is and get the right direction. Is your center treated adults. Yes. Yeah, okay, I have to be honest, we do, but not as much as I'd like to. Like the world of autism is mostly a pediatric world, but we, we do treat adults and we need to up our game even more with adults. Next question is, are there certain foods that will help with the behavior of autistic children like a gluten free diet, for example. Yeah, so most, if not all the evidence to date has shown that gluten free diets do not help with courses of autism. And that was kind of one of the things that was way out even 10 years ago, and it became not I don't want to say a bad but it became a big thing. But let me clarify, a lot of our kids that have autism have GI issues. There was definitely a link there, more so than the general population. One of the difficulties is we don't know why that is, and it's not considered one of the core symptoms of autism. I have one GI doctor explained to me this way which for some reason made a lot of sense to me. It's like, okay, so if I was talking to you, and you were allergic to certain foods and every time you ate your stomach cramped up like total yuck. And that was, but you couldn't communicate very well, like what was wrong with you. And that makes that you're going to improve all the way around, you're going to be a better move, you're going to be better deal with your environment. So I think that's the way that a lot of us are conceptualizing it. So the answer, yes, it can definitely help the child you want to definitely, you want to make sure though that that's what's really going on, like it's not every good autism has gluten, you know case and free problems that would benefit from being having that type of diet is really expensive and hard to do. So let's just try it and see if it works and see if it helps and see if anyone else notices because you'll have your own placebo effect. But for the most part, unless they're showing significant GI issues. We don't usually recommend that unless we're specific symptoms associated with. Next question is how do you determine if the behavior like lining up toys or shoes or asking repetitive questions is an anxiety type behavior or if it's autism, if the child almost seems to have some OCD type of issues. And that's one of the differentials that we really try to get to is trying to ferret that out. And that takes a little bit of digging right. So one is kids with autism lineup toys because they like to. It's their way of that's the only way like to play with toys. It's very important to them to get mad when they're not, which is a lot different than if I'm lining up toys because this is where the FBA I started that functional behavior analysis comes in what is the function of that behavior. Why are you lining up toys. Is it only happening when you're anxious or an anxious situations, or if they're relaxed at home and lining up toys well that doesn't make sense because they're not anxious right. So then the OCD part is, are there more compulsive tendencies, not to, you know throw around the big words but OCD tends to be what they call ego dystonic meaning people with OCD are aware of and don't like the compulsion like I know I have to wash my hands I don't like it I close the door three times I don't like it because of autism. It's not it's called ego syntonic where they actually it's something they like to do it's not something they don't like to do so there are different ways that we can actually figure out if it is more OCD or if it's more of a stem or repetitive behavior that we say. I should just mention real quick just as a reminder that we are actually recording tonight so we will be sending out the link for this recording to everyone who's who signed on. In case you ever want to go back and reference a certain point of Dr. Kennedy's presentation, or any of the other questions that have been asked and we will also include some additional information. So if you want more information about things like m chat. We can include that in that messaging. Another question is one example of like when someone's son was in school and someone had a classmate who was on the spectrum. Parents were complaining about the time that child took away from the rest of the class. How can schools and parents learn to understand how to be sympathetic and compassionate towards children on the spectrum. Thank you from Vanessa. What a great question to because I think that I would actually generalize that to the world today. Not just a school and number two not just about autism. You know we hear the same complaint about kids with ADHD or traumatic brain injury or even that's in a wheelchair. Whenever you have any child with a special need that requires more attention, you'll have a certain group of people get mad about that well that's taking attention from the rest of the class or, you know, what's interesting if you study neuro diversity. Whenever you have inclusion as part of your, your programmatic baked in. And actually you find it improves the class dynamics improves team dynamics and improves the compassion of the whole class, and that's modeled from above by the way. So me like if the teacher is able to show acceptance and be able to incorporate those things and that's modeled for the rest of students and the parents, then there are the benefits are extreme with regard to being able to to incorporate in those kids. It's, it's just a sad state of our world though that that's often not the case, you know, and, you know, I'm not trying to be judgmental because like as a parent myself you know I want my child to learn I get mad if the parent of the teachers always paying attention to the behavior problem kid over there. So it's just about inclusivity it's about the other part of it though is is the separate is like, well we as a society and schools, we need to give the kids the right support to succeed. We need to be aware of the teacher, having 30 kids to have to deal with a kid you know who's having any type of behavioral problems right. So we want to make sure, and again this is about resources about money and this is about the school system is about like work, it's work in settings the same way. How do we as a society, get the right resources to support our kids to succeed in the best way. We have two more questions that are sort of related on one that is in the form here and another one that was asked sort of in advance of my email. So the first question is again from Vanessa is what age should a parent be attentive. These sorts of differences and start looking into a diagnosis. And then the other question that came in which is what advice do you have for parents who may be somewhat in denial. And Vanessa can ask any more questions she's done. Okay, let me answer in a different way one is, you know, we are able to diagnose autism reliably actually done this 12 months of age if the symptoms are there and obvious. And which might be something I find shocking it's like wow that's so young. That's only in kids at that age who are showing significant symptoms. And by two years of age, we're very good and very stable. There are a small subgroup of kids at two years of age that are just on the edge of it. We have them come back within six months in a lot of them end up having autism, but still so you know by age of three for sure but we can diagnose as young as 12. Two years is well within our wheelhouse and being able to see the symptoms. So, what you can look for what you should be concerned about again use your instincts if there's anything probably a lot of first time parents they don't compare it they don't know most parents don't know what a little baby supposed to do a lot of doctors don't know like I asked a doctor when is the first time a baby is supposed to smile they don't know they know what goes wrong, but you know when is when is the average child actually walk. We don't know that we know when it's delayed, but we don't know the average range of babies walking. So, you know, like I said the markers the early signs I would actually recommend going to if you just Google early signs autism. You'll come up with a website that actually does a really good job saying here's what we look for a different ages that if you're not seeing this by this point, kind of be concerned. You know if you're not seeing pointing by this age you're not seeing smiling by this age sharing it kind of goes through that in a very easy or more clear way. But even beyond that, if you are a parent and you're concerned, let let your pediatrician know. And if you go if you're not satisfied with the pediatrician's response, push it, you know, take it up to the next level like don't take no for an answer. That's my advice because you know how many stories I've heard like all the pediatrician or whoever said don't worry about it and now it's been three or four years I wish I would have said don't go with your instincts is what I would suggest for that. The denial question. Wow, that's a lot harder right because you know any parent doesn't want to hear anything usually about their their child that is something's wrong with them. What I learned to do I've actually had personal experiences with this where I've had relatives I'm like this is what I do my gosh I'm afraid to tell them. You can't tell them if they're not ready to hear it won't help. Ethically you might feel like you need to like you might point out a very gentle way like, hey, you know I noticed a little bit of differences here. Have you noticed them compare other kids I would do it in a question curious way, and then I'd see what response I got, you know the response was militant no I would back off a little bit and just let me know like I'm here. I would view them but if if they are open to it at all then I would push it a little bit more and say yeah I know it's another kid like this have you ever thought about this and push it but your the denial piece is is really hard as a professional it's even harder because I feel it's my job to even sometimes leap beyond the personal part and say like no you're this is something important that you need to look at and sometimes you need they just need to hear it objectively. So you can actually have someone else is more objective telling that that's even better. Okay, we have time for one more. So I think will be a useful question is, are there any caregiver groups that people can join or support groups that people can join to either deal with their own issues or to lend support to others. Yes, the real kind of disadvantage on that as I'm new to the area I just moved here like four months ago so I'm not the best person to ask. I can tell you though that autism speaks is everywhere, including New York. And they, if you went on their website, they would have a list of resources as well. I have a social worker and stuff here that can guide people to different resources with regard to support groups. It's a great question and let me just end it by saying, you know, I know it's unsatisfactory they're not able to say what the support group might be. But I have been told by parents that the most help that they've ever gotten isn't from someone like me, who's the doctor talking about this it's from other parents who have lived experiences similar to theirs. So I know there are, there are email support groups there are Facebook groups, autism speaks as a group. So, without being able to say exactly what those groups are I can tell you definitely pursue that though, because you're not alone out there if you're dealing with this I guarantee even though you feel that way, it might even feel more that way as it progresses and you navigate to the systems. But one of your best sources of support are going to be other parents that have gone through it as well. Thank you very much. Dr any this was great. I want to say, we really appreciate your time for spending an hour with us. And again to everybody who tuned in we will be sharing the recording with you. Please share it. If, you know, Dr Kenny can I ask if, if anybody has any additional questions they'd like to follow up with. Is it okay for us to reach out to you then perhaps direct them to the proper. Yeah, I think that they have your email or whatever send your it's in my way we can try to help out as much as I can. Fantastic thank you so much again. And again thank you for you guys for doing it's a great community service. And I hope I hope if you're interested we'll see you tomorrow night for our next program which is art and autism, which should be really fascinating. Thank you everybody take care. Have a good night.