In honor of World Autism Month I am speaking with an expert in the field of autism treatment and the author of the new book, Hidden Brilliance: Unlocking the Intelligence of Autism, Dr. Lynn Kern Koegel.
Whether your child has Autism or not, her strength-based approach that uses a child’s natural interests to drive their motivation and help them tap into their full potential will resonate with parents of children with both neurodiverse and neurotypical brains.
Dr. Lynn (00:00):
We know that all children have areas where they’ll find challenges no matter whether they have a diagnosed disability or never have a diagnosed disability. As a parent, we all know that there’s always areas of challenges, but there are easy ways if we can motivate the children to get through those challenging areas.
Dr. Sarah (00:24):
April is Autism Awareness Month. Autism Spectrum Disorder refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and non-verbal communication challenges and difficulty forming relationships with others. Here today to help bring awareness to using a strength-based approach to tap into the full potential of those with autism and truly with all children is Dr. Lynn Kern Koegel. Dr. Koegel is a clinical professor at Stanford University School of Medicine and co-founder of the Koegel Autism Center at the University of California Santa Barbara. Her new book, Hidden Brilliance, offers a groundbreaking approach that encourages parents to identify their children’s strengths and interests and use them as a tool for social communication. Improved learning in overall growth while reminding us all to welcome and support diversity in our homes and in our communities. So whether your child has autism or not, these methods of fostering intrinsic motivation and looking past the behavior to try to identify our child’s true desire in offering their more appropriate ways to get their needs met, our strategies, all parents will be able to utilize.
Hi, I’m Dr. Sarah Bren, a clinical psychologist and mom of two. In this podcast, I’ve taken all of my clinical experience, current research on brain science and child psychology and the insights I’ve gained on my own parenting journey and distilled everything down into easy to understand and actionable parenting insights so you can tune out the noise and tune into your own authentic parenting voice with confidence and calm. This is Securely Attached.
Hi everyone. Welcome to today’s show. We have Dr. Lynn Kern Kegel here today and I’m really excited she’s written this kind of amazing book and we’re going to get to talk to you all about it. So welcome and thanks for being here.
Dr. Lynn (02:29):
Thank you so much for having me. It’s my pleasure.
Dr. Sarah (02:32):
Yeah. And so you’ve got done quite a bit in the world of autism and I can you tell us a little bit about how you got into this work, what you’ve been doing, the Koegel Autism Center that you’ve founded and how this work got started?
Dr. Lynn (02:51):
Well, I did start a long time ago. I started in the seventies and that was when autism was very rare. There weren’t very many that were diagnosed with autism, so it was pretty rare. And now a lot of one in every 44 children are diagnosed with autism. So it’s very different from back when I started when one in every 2,500 or so had autism. So it has changed a lot, but there are a lot more resources going into every aspect of autism from diagnostic all the way through treatment. So a lot of good things are coming out and there’s a lot more funding going into it. And previously I spent a lot of my career at the University of California in Santa Barbara and my husband and I founded the Koegel Autism Center there and now I’m up at Stanford and I work in the School of Medicine at Stanford.
Dr. Sarah (03:46):
Amazing. And so you wrote this book, Hidden Brilliance and it’s not a typical book that I’ve seen about autism and I’m just so, I was super intrigued by it cause it’s super aligned with the way I look at all things in childhood from this strengths-based lens. And so can you talk a little bit about why you wrote this book?
Dr. Lynn (04:09):
It probably was in the thinking stage for maybe a decade or more and it really hit me when my nephew was diagnosed with autism and there were people evaluating him and the specific instant was when he was upset and he threw a toy and it went into like 25 pieces and he looked shocked and he put together the toy so quickly that, I mean, it was something that I would’ve had to use the manual for and maybe even had trouble with that I could never have done it in the minute that he did it. And he was non-verbal at that time and I thought, gosh, that’s really interesting. But when we got his report back, the only thing the report said was that he threw the toy. So it was kind of a aha moment where I started thinking back about even my training. I was trained always to look for what’s wrong with the child and I think there’s a little bit more focus now to look at what’s right with the child, but not as much as there should be.
So what are their strengths? What are they doing well? What little glimpses do we see of things that will bring out the best in them? So we wrote this book mostly just to get people thinking about the great wonderful parts of autism and pretty much any, we know that all children have areas where they’ll find challenges no matter whether they have a diagnosed disability or never have a diagnosed disability. As a parent, we all know that there’s always areas of challenges, but there are easier, easy ways if we can motivate the children to get through those challenging areas. And while it’s helpful with kids without autism or any disability, it’s critical for children with autism because they really lack motivation because things are hard for them. And if someone says hi to them, if they say hi, say hi back, it’s going to get harder because someone will say, how old are you and what’s your name and what’s your teacher’s name and where do you go to school? It’s like that’s the hardest thing for them. So we’re trying to really focus on a really incorporating these motivational components which are good for any child to really help their learning and produce better outcomes.
Dr. Sarah (06:21):
It’s sort of like child centric versus diagnosis centric.
Dr. Lynn (06:27):
That’s exactly right. And it’s also when thinking about what they need is not worrying so much about are they having this milestone and this milestone and this milestone for example, with language, we don’t want to worry if they’re saying mama or dad or things that might be more social words and harder for them, but really saying what are they like and what’s going to be a good stimulus for first words or language or anything that’s really going to motivate them. And later we can worry about the mama and dad and things that are more social, but getting a good kickstart so that the kids really are motivated and come in running to the sessions and love the sessions rather than trying to avoid the sessions and learning slower or maybe not learning at all.
Dr. Sarah (07:12):
Yeah. Oh, that’s such an interesting point to think about it because this makes me think of a Reggio Emilia model for education, which is like so in love with that style of education because it’s child led, it’s the interests of the child dictate the curriculum in the classroom. And so in my head I immediately jumped there because it kind of translates to the same ideas when you’re doing therapy with a child, it’s so hard and I so much understanding and empathy for a parent who has a child who has autism, who as a parent who doesn’t perhaps wants just so desperately to have that child look at them and come to them and hug them and look for those social responses that we really value and cherish in our interactions. And to say, if I could only just get my child to do that, things would feel better. And perhaps that’s true, but it’s almost like focus, that might be the byproduct, but of really recognizing where is this child at right now and instead of trying to get them to do the thing that we wish they could do to do the thing that they’re interested in as a way of building out that language and that social cognition and all the things that you know, got to get the in first.
Dr. Lynn (08:42):
Exactly. That’s so true. And we know from the literature with children without language chi, children that are typical language learners, if you talk to them a lot, they develop their language. The more you talk to them, the faster their language will develop. So just talking to them is so important and expanding on their language. So if they’re playing with a toy to talk to them and if they say something like book to say, oh yes, it’s a book about animals and just kind of expanding. But unfortunately with children with autism, it doesn’t work that way. The parents have to be really vigilant and the treatment providers and teachers have to be really vigilant to try to see where their motivation is. Otherwise it just is going to go over their head and they’re, it’s going to be kind of not productive time and it’s really a lot of effort for parents.
My heart goes out to how much effort it is for them to really set up those learning opportunities because many children with autism, if the learning opportunities aren’t set up, they’re not going to learn. So for example, if they like to go on a drive in the car instead of just jumping in the car and saying, oh yeah, I’m going to grab my keys and I’m going to grab my purse. And then we can get in the car setting up that opportunity where you say opened to open the door or buckle to buckle the seatbelt or go because the end result is something that’s going to be naturally reinforcing for them. But it is setting up those opportunities and really thinking about motivation and what’s going to be so exciting to them that they’re going to make this big effort to try to talk and to try to use more language and communicate, which is a big challenge for them.
Dr. Sarah (10:25):
So it makes me think of set and setting versus content. If we set up the mindset of interest engagement because if we’re talking about something that they’re motivated and enjoy and the setting, doing the learning in the car where they’re really excited versus trying to force the content in a set and setting that doesn’t activate their attention and their engagement or maybe is overstimulating to them and they shut down and pull back. That’s really interesting.
Dr. Lynn (10:58):
Yes, absolutely. That’s just critical and I think that’s important for all kids. I do remember when I got my PhD after I had children and I remember coming home from my first statistics class and the same week one of my daughters came home and said, oh, we learned mean, median, mode. And I was like, oh, that’s what I learned in grad school today. And they did it with a bag of M&Ms and they had ’em count the M&Ms and the colors and line them up and each child in the class had to do mean median and mode and they loved that. And here they are learning statistics, which a lot of people shy away from, but they loved it. I I thought that’s a brilliant way to teach it. I wish I had done that in my grad class.
Dr. Sarah (11:43):
Right? Where were the M&Ms?
Dr. Lynn (11:45):
Yes. And that kind of teaching, which has natural reinforcer in it and has motivating items used or activities used is great for all children. But it is again, especially critical for children on the autism spectrum. And I will say that the one difference between children who are developing that don’t have autism and children that have autism is they in order to get that diagnosis, they have to have restricted and repetitive behaviors. So a lot of times it’s individual, every child’s is different, but sometimes they’ll be really interested in turning, let’s say the light on and on and o off and on and on and off. And it’s not really something that you see kids without autism so interested in or they might be interested in watching the ceiling fan go away. But we have learned through the research that if you use those is a stimulus, they really can motivate the child and they don’t increase at other times. So some people say, oh, I’m so stressed about turning the light on and off because he is always wanting it on and off and I’m afraid that’s going to be the only thing he does. And it’s actually kind of the opposite. If we can get in a good context where we start and just cover up the switch and say on and have the child say on or off, then you can expand on that and they’re really learning appropriate social interaction and language within that context of that activity that’s really rewarding for them.
Dr. Sarah (13:18):
Yeah, that’s really interesting because, and I’m curious, your take on certain types of autism interventions, applied behavioral analysis, where or other very behavioral interventions that really look to modify a behavior, oftentimes these repetitive behaviors. And I’m just curious how does that fit in or maybe shift with what you are kind of articulating?
Dr. Lynn (13:43):
Well that’s a really good point that you bring up because years ago there was a parental causation theory of autism and is if we mom need moms need more guilt, we always felt, I dunno, as the mother felt guilty about everything and most moms I think, yeah, we always worry are you doing everything? But unfortunately many years ago there was a theory that the mothers caused it and most of the interventions separated the children and their mothers as they felt like the parents, but mostly mothers were kind of feeding into the problem instead of helping their children, which was so sad. But some of the early ABA intervention did show that it separating the parents and the children was the exact worst thing you could do because they didn’t generalize these newly learned behaviors and actually that the parents, we needed them to be an integral part of the intervention.
It’s not their fault. The personality tests everything have shown that there’s nothing the parents did to their children once they were born and they never wished they didn’t have them or anything like that. It wasn’t anything like that. It’s something they’re born with. We don’t know the cause, but it’s something the children are born with. And so the early ABA interventions were a big jump, but unfortunately they used a lot of punishment and that’s really unfortunate. But that was just kind of the process because people didn’t understand that when children have inappropriate behaviors, it’s not that they’re being bad, it’s that they don’t have appropriate way to communicate any child. Always with our kids we always say, oh, use your words. When they start to tantrum or get upset, we try to replace that. And if they’re language is developing without a delay, they’re usually pretty good at just getting to learn that they need to say their words maybe in the second year of life early on.
But children with autism who have language generally have some communication delays. It’s really difficult for them to get that connection and sometimes they use those earlier behaviors that work. So now we know the more important way to get long lasting change is to really get in there and figure out what the problem is and teach them a good replacement behavior. And so the reason we did a lot of our work or in the late seventies and early eight eighties on motivation was because the ABA, it was effective but the gains were slow and it required a lot of hours of intervention. And so we did a lot of work on motivation and how to motivate the children. That’s where we and some other people that at that time were researching around the country. Some good stuff came out of Emory with in incidental teaching.
And back then we found that if we used their motivation, we didn’t even have to worry about the inappropriate disruptive or interfering behaviors because they sort of dropped out by themselves. When the kids are having fun, they’re more engaged and they learn faster. So that was really important that we did. And the other thing that we’ve really looked a lot at is where can we get some added gains? If we pick particular behaviors, will we have some added gains? And that’s where we started looking at these initiations. So teaching children for initiate interactions, that kind of takes the pressure off parents of having to set up all these opportunities. We’ve done a lot on question asking, having the children ask, what’s that or where is it? And so on, all the different questions, what’s happening because it seems like that really helps create independence, it gives them a way to initiate learning opportunities and it’s more back and forth.
And sometimes a lot of our kids are developing these great requests, so when we start teaching first words, they’ll request things but then, and they may even get to sentences where they say, I want something or can I have something? But they don’t do this question asking. So we talk about this in the book also where we have laid out some procedures for teaching questions, which I think it’s good for all kids. I mean, I taught my kids pretty young to ask when they, what’s that mean? What’s that word mean? Or what does that mean? Or ask a lot of questions. So I think it’s that information seeking is good, but I think especially important for the kids with autism who may not develop that without special, special help in that area.
Dr. Sarah (18:18):
And it’s interesting because I think if we do look at just the behaviors, just the restrictive repetitive behaviors or we focus on the meltdowns that happen in these moments of big frustration, we can, I wonder if that’s maybe a bit of a red herring. I mean when I talk about parents of kids who don’t have autism, I still say those are focusing on just the behaviors in isolation is a bit of a red herring. It’s always more important I think to look under the hood, why is that behavior happening? So for the sort of repetitive behaviors, maybe it’s just because it’s really stimulating and pleasurable, but also I think for the explosive behaviors it’s like well is it because there is this frustration and the frustration may be actually due to a lack of the communication skills to solve the problems, to ask what they need to say? No, I don’t like that to be assertive. And so with or to be able to understand the sort of back and forth of a conversation. And so they get frustrated and if we’re able to actually focus on helping them meet those needs more effectively or have access to the behaviors that they find self soothing…
Dr. Lynn (19:36):
Dr. Sarah (19:37):
We can actually, we don’t need to focus so much on changing the behavior anymore because you were saying it kind of corrects itself.
Dr. Lynn (19:46):
That’s absolutely right. And I think the early ABA interventions is, there was this belief that you had to get rid of all those other behaviors first. So we spent a lot of time just saying, hands down, look at me and getting rid of the behaviors first. And then we were realized, I mean first of all there we all have repetitive behaviors. Some of us tap our foot or play with our hair or tap our pencil or things like that that just don’t interfere at all. And that’s the same with kids with autism. And then there are other behaviors that do interfere with learning that we kind of want to reduce. But if we get this motivational teaching going on in there, we don’t really have to target them at all. We don’t have to do anything for ’em. If we get the kids, if they become interested and our teaching methods capture their motivation, then we don’t really have to worry about those other behaviors.
They kind of drop out by themselves. And I think that we don’t really know, we still to this day don’t really know why the kids engage in the rbs. The repetitive and restricted and repetitive behaviors are often called self stimulatory behaviors. But there is kind of a thought that if they’re not that the organism needs sensory input and if they’re not getting it from the environment the way other people without autism would get it, they might create it for themselves just to arouse their themselves and things like that. So in that, if that is true, by giving them fun activities that are competitive or competing with that repetitive behavior, we can have some good gains and it just kind of goes away because they’re having so much fun. And then other ones, as you mentioned, may be self soothing. They may not be that big of a deal. Maybe we need to teach the rest of the world. Okay, some people tap their foot, some people might do other things, but don’t worry about it so much.
Dr. Sarah (21:44):
And I think that gives, it’s like when you focus on it and focus on it and focus on it, it also can amplify anxiety around it I imagine for a child. And so it can actually do the opposite of what we’re trying to do. If a child is engaging in a repetitive behavior as a way of soothing themselves and then we are in focusing on that, amplifying their anxiety, they’re going to need to soothe themselves more.
Dr. Lynn (22:13):
And people are different. I have a few adults that have come to me and said, I want a date and I want to know what I might be doing interfering with that. And sometimes they’ll be having some repetitive behaviors and they want me to tell them and point that out. And some of ’em might be, I had a guy the other day that a brilliant grad student on the autism spectrum and he would inadvertently pick his nose while during conversations and he didn’t even realize he was doing it. So some of those things he was thrilled to have me just point out and he said, oh, I didn’t realize that I was doing that. We all have a niche now and again.
Dr. Sarah (22:57):
But again, that’s a good example of following his interests and motivations, right? Because he wants to gain these social relationships, he’s motivated and interested in doing that. Your feedback for him to modify his behaviors is part of that. And he’s like, he’s able to integrate that in with a regulated open position. Whereas if you are a three year old and you just want to turn the light switch on and off before you move out of a room and that’s just something you really want to keep doing and everyone is like you not allowing you to do that for whatever reason I’m picking, I mean I’m picking that example, but it becomes, can become more amplified, the need, the urge to do it.
Dr. Lynn (23:42):
And I think that people, what you can do is if they’re learning first words you can do on and then when they get to the two word stage, you can say light on and turn and so you can expand that. So even maybe later on they’re doing a lot of conversation and then getting to do that. And there’s also a lot of good research on transferring that to more appropriate maybe toys with lights or things like that. But I think you’re perfectly accurate. And I also think you mentioned about the meltdowns. I think too often, even sometimes when people figure out the function of the meltdowns, maybe they’re trying to avoid a task, they don’t first look, how can I make the teaching more fun? So there might be a way to teach the same task but make it really fun for the child. And then second, if they’re replacing trying to teach a replacement behavior, I need a break.
A lot of people don’t really get the understand that they have to really practice that a lot till it becomes really automatic for the child. So a lot of times they wait till the problem behavior occurs. I know all of us parents do this a little bit, but where there’s a problem behavior and you say, oh remember you’re supposed to use your words. And then they use the word, but then they figured out that first I have to show the problem behavior, then I use my word and then I get what I want. Whereas we want to take out that first nip that in the bud where they go straight to the replacement behavior, but only can we get that if we practice it a lot in between those more challenging times. So really just practicing setting up situations where you can say, okay, tell me if you need a break. If that’s why they’re needing, if that’s why they’re showing the interfering behaviors or let me know if it gets too hard and is it too hard before they get really frustrated. So that practice is something that’s really important with children with autism to make sure, and probably adults too, but make sure that they’re really getting a lot of practice so that they, that’s their go-to it, go-to just interfering behavior and then they get that prompt to show an appropriate behavior or request, verbal request or whatever or sign or whatever it might be.
Dr. Sarah (26:02):
And it’s interesting because I think a lot of this also is true for kids, all kids. I’m thinking of my kids definitely do a lot of things that aren’t great behaviors and I have to figure out how to, not in the moment try to teach them not to do it, but to sort of set them up for more success in the next moment and try to, I talk a little bit about the ABC’s: antecedent, behavior, consequence. And trying to help a kid understand, well what happened before you did this thing? And then what happened after? And if we want to change what happened after, could we look at what happened before so we could work giving kids more insight into why they might engage in a behavior. And then looking at that piece as where we modify versus just focusing on shifting the behavior. An example for, and I’m imagine this would work with autism as well, but imagine for an example for any child might be when you get frustrated you hit okay, well frustration usually leads to hitting if you have no impulse control.
And most little kids struggle with that. So instead of trying to teach them to do something else when they’re frustrated first you can get there, but first we need to figure out how do we notice when we’re frustrated, right? Because the goal is not actually don’t hit the goal is notice you want to hit and stop. And that’s a far more complex task and it requires mindful awareness of the, I’m mad or I’m frustrated and I want to hit and then I can practice putting in a replacement behavior. But the very first step is that mindful piece of notice that I’m frustrated or maybe notice that I have the urge to hit. And I imagine this process that you just described that you’re using in helping children autism kind of learn these alternative behaviors. I mean that’s a good model for learning a behavior period.
Dr. Lynn (28:17):
You’re absolutely right. And I’ve worked with so many grad students and they come in and they’ll to my office and say, oh, he hit me or he hit himself or he bit himself or he had a meltdown. And I’m like, okay. So first thing, whenever a child has one of those behaviors is when they’re really agitated or irritated, it’s really hard to work on something in that moment. So the important thing is not that you stress about it, I say take a breath. It’s okay. We all have those kind of behaviors. The important thing is what is the plan in the future? So if we know the child is hitting because someone took the toy, we might want to teach ’em to say mine, but we need to practice that again a lot. Practice, practice, practice. So we might even want to set up situations that say, okay, I’m going to take the toy, can you say mine and give it right back and make sure that when you’re doing in a natural environments that the other children give it back so they’re rewarded for that.
Or we had a little guy that one of the things that’s important that I should preface my story with is that aggressive behaviors work kids wouldn’t keep using if they didn’t work. If you hit the kid when they’re taking away your toy, they probably won’t come back and try to take your toy away again. So the only reason that the kids keep doing these behaviors, which are anything meltdown, aggressive behaviors, is because they do work for them. So the important thing is really to set up a situation where they practice a better way to express themselves. So my story, we had a little guy that liked to throw the basketball, but whenever somebody walked in front of him, he’d take the ball and throw it right at the child and most of ’em would end up in the nurse’s office because getting hit in the head with a basketball, that can be pretty painful.
And even if it didn’t cause any damage, they’d still go to the nurse’s office cause they were pretty upset. What we had to do is when he started playing base basketball, we had people walk in front, we started with adults and then some kids and we held the ball and we had ’em say, excuse me, excuse me. And they get away really quickly if they say, excuse me. But we had to really practice that a lot. So in the moment when he was throwing the ball at the kids, we didn’t work on it right then because he was annoyed that they were there. But in the future we set up a situation where every single day we practice that. And after a few days he realized that actually it’s a lot easier to say, excuse me, because you don’t have to go run after the ball afterwards and it has the same outcome.
So you can see how that works with just about any behavior for any child, just trying to figure out what they’re trying to communicate. And a lot of people think that kids on the autism spectrum are not social, but a lot of ’em really want to have friends. And when we talk to the studies that interview verbal adults and verbal adolescents and verbal children even they say they want to have friends and they want to have relationships and things like that. And I noticed that a lot of times preschoolers with autism, they will maybe show some aggression because in their repertoire they don’t have a lot of skills to engage socially. So just teaching them some good ways to play, take turns with toys, give other kids toys, say my turn, your turn. And things like that really early on are really helpful to really improve that social but also replace that behavior that might be trying to get a peer’s attention by using pushing or some other behavior that works but is not appropriate.
Dr. Sarah (31:54):
It’s so funny because that basketball, I was just the other night I was my daughter, she’s three, she’s a typical three year old kid who gets frustrated sometimes and doesn’t always have the language to ask for what she needs. And my son was, he had this basketball that he had just gotten, he was really excited about it and she grabbed it and ran away. He was really upset. And I don’t know how I had the wherewithal in this moment because I’ve definitely could have very easily just been yelled at her and he was using that give it back. But instead I said to her, are you trying to get him to play with you? And she nodded and I said, you can hand him the ball and say want to play catch? And thank goodness that my son was not so mad at her for taking the ball away that he was very much sure we can play catch. And she said, play, want to play catch. And he said, yeah. And then they played catch for a couple minutes and then they went off to do something else. But it just made me realize, I was like, there’s so many times when our kids do something that gets us scared or frustrated or in some way hits our threat detector and we want to shut it down or teach not to do that, instead of trying to understand why they might be doing something and teach them what to do instead.
And it could have not landed. She could have just been, screw you, I’m running with this ball. But just being willing to sit there and be like, is there an unmet wish or need that they would maybe be equipped to communicate if you gave them a little bit of an a support of a scaffold of a little bit of a sup of an assist and then they can run with it. And I think obviously with kids with autism, it’s a little bit more of an we have to repeat it 10 times more or a hundred times more than we might with a neurotypical child, but it doesn’t the same mechanism. It’s just how many times do we need to repeat it for the learning to get sort of internalized.
Dr. Lynn (34:13):
I think that’s a brilliant example because we know from studies of parents who have typical language learners that if they use the style where they’re more punitive and just when there’s a problem say, oh, don’t do that, and oh, get away from there or this and that versus the example you gave where they explain everything and try to teach the kids that have, the parents that try to teach end up doing much better in the long run language rise and they just do much better. So I think you’re absolutely right of taking all those opportunities which happen across the board no matter if a child has a disability or not, taking those opportunities to really teach and taking those moments to teach and like you said, trying to figure out if there’s a function and if we can really create a nice environment from that function that could have gone south. But if we could have really used that to have a teaching moment, and that’s a great skill that she’s going to learn is to be able to play and do that and how to play and how to ask, how to enter play and how to ask kids to play. Those are really important skills. So I think that’s a great example.
Dr. Sarah (35:23):
And I think that the reason why that one stuck out to me as significant for me to remember, I was like, I got to log this in my own parent toolbox, is that I think a lot of times we think if a kid is doing something aggressive, they’re mad. And we forget that sometimes when a kid is aggressive, they’re actually seeking out connection. They just are doing it with really, really shoddy problem solving skills.
Dr. Lynn (35:50):
Exactly. And I think it’s important to remember that a lot of times we do the wrong thing. For example, schools as kids get older, they’ll suspend the kids if they have a problem behavior. And I have kids where they’ll get disruptive in school because they don’t like the assignment and they send ’em home and their kids are like, yes, got out of that one. Or they’ll send ’em to another room instead of really thinking about what can I do to support the child so it won’t happen again. So time out, things like that that maybe aren’t really that helpful for the children, they’re not going to learn that. Really think thinking of things like you mentioned where you can really use it as a teaching moment.
Dr. Sarah (36:35):
And in order to teach, you need to know what the function of the behavior is, you have to be curious about it. And sometimes that takes a little bit of trial and error, but very, you have to be intentional. You can’t really be reactive.
Dr. Lynn (36:47):
Exactly. And I mean there are some situations like my nephew, when he was in preschool, he used to hoard the trains, he loved the trains and the train tracks and when the other kids came around, he would scream at them and they would run away. And consequently, after just probably about a week, he had his own little private that he got all the trains and he no one else would come near. So we really taught him how to take turns and invite kids into play when he wanted to play and not to that they weren’t, were the school’s toys, he had to take turns because other kids like to play with ’em. But a lot of times I think children think that if a toy is taken away, they’ll never get it back. So when we teach turn taking, we start with just taking away my turn and giving it right back really quickly and then doing it over and over so the kids realize I’m going to get it back, it’s just going to be a few little short period of time, but I don’t have it.
And then it gradually add on to that so they can in what we call tolerated delay, they understand that, okay, I’m going to get it, but it might not be right this second so that my turn really helps. And that helped with my nephew. He al actually had to open every single door. If he didn’t get to open a door, he would have a major meltdown screaming. And you can imagine if his parents inadvertently opened the preschool door, he’d come into the preschool screaming for 20 minutes and they were like, what’s wrong? So we did my turn, turn with that and the first time he didn’t like it when it wasn’t his turn. But pretty soon he got to realize that every other time was his turn, he just couldn’t open every door. And then later on as he grew up, it didn’t become an issue.
But I think some of those things you can deal with sometimes there isn’t seeming he can’t figure out the function. I don’t know why he had to open every door and would have a meltdown if he didn’t get to. But that was really interfering with them being able to go a lot of places. Or if anybody else inadvertently opened a door like a stranger, he’d have a meltdown. So some of those things you can deal with with just teaching them things like turn in your turn, but it’s often as possible if there is a function, it’s critical to address the function, otherwise the behavior will never go away. Cause they don’t have a way to appropriately communicate.
Dr. Sarah (39:09):
And I think you bring up a good point that one, even neurotypical kids, you can’t always figure out what the function of the behavior is because you can’t read their minds and their logic is a little bit primitive. So it sometimes doesn’t make any rational sense, but I would imagine that’s even more pronounced sometimes in autism where the reason behind it is so deeply embedded in some internal system that we don’t have insight into and they might not be able to show or articulate. So it’s probably in a lot of cases, a little bit more. If you can get there, fantastic. If not, assume there’s a reason and at least just try to validate that there’s probably a reason and move towards teaching the replacement or the alternative way to get their need met.
Dr. Lynn (39:52):
Exactly. And I think if the kids have some communication delays, that makes it even more challenging. And a lot of the early intervention programs don’t put as much emphasis on verbal communication as they should. And so the kids maybe continue with that delay for a longer period of time than necessary. So I think that’s really important to start early, getting that communication going and getting even simple little verbalizations for them to indicate their needs so they don’t have to fall back on that earlier behavior that all babies use when they’re not perfect, which is crying and other, that kind of communication.
Dr. Sarah (40:33):
And I’m curious if parents are listening to this, and I know we’ve been sort of talking about the spectrum of things and also recognizing that a lot of these strategies work for kids who aren’t even on the spectrum, but also parents are like, I guess I have two questions. One is if parents are listening to, they’re just like maybe is my, I’m not sure how to know and there’s always been this sort of question, but we haven’t really assessed one. What do you recommend to parents who want to understand their children’s behaviors better understand if they’re maybe perhaps dealing with or want to rule out an autism diagnosis? And then my second question is for parents who do have children on the spectrum, a lot of what you’re describing is a little bit different from a lot of the mainstream ways of treating autism historically. And I imagine parents who are listening to this might be like, whoa, this is, no one told me about this. And I, this is the first I’m hearing about this and these different ways of thinking about it. What do you recommend are steps parents can take to find out what their options are as far as supports and philosophies and resources that are more aligned with this kind of a strength based and sort of child-centered approach?
Dr. Lynn (41:52):
Well, we know that early intervention is really helpful for the children. And we do know that parent education is important. So if a provider is saying, oh, you shouldn’t sit in the session or we don’t need you here, just drop ’em off or go in a different room, there’s a problem there. We also, I would say it’s a big red flag if your provider comes to the house or you’re bringing your child to school and they’re crying. So sometimes parents will say, oh, they look out the window and see the provider’s cart coming up and they’re start crying. For the most part, that usually means that they’re using some outdated procedures that aren’t really considering the children’s motivation. So I would say it’s not a really hard tweak to be able to really consider the kids’ motivation. There are specific steps that we discuss in the book that you can make sure that we have a fidelity of implementation where we look and say, are they using child choice?
Are they varying the task? Is it a natural reinforcer? Are they rewarding attempts? So there’s a lot of different variables that you can objectively look at and see if the kid’s getting a good program and if not, they’ll usually have some avoidance behavior or escape behavior. So that’s important. And I think sometimes with the training, sometimes you get the people that are least have the least amount of formal education in the specific areas that spend the most time with the kids. So some of the in programs, they have less formal education, the people that are spending the hours and hours and hours with the children. And same thing with school. Sometimes it’s a paraprofessional or an aide that might not really have any formal training in the area. So that’s important. And to make sure they get the training and also to make sure the parents get some training too so that they know to be able to recognize this and be able to say, I’ve had some parents that just help their provider really show them, the parents showed them what really works with my kid, your child better than anyone else, and what works and what doesn’t work.
And it should be more of a team effort than it needs to be a team effort for everyone to, and I’ve had a lot of school programs where maybe they aren’t prompting the behaviors they need to, or maybe they’re had programs where I see the paraprofessionals sitting in between the child with autism and the peers at lunchtime. So they’re really interfering with socialization. So there’s a lot of ways that we can, if the person that’s spending a lot of hours gets proper and enough training, that’s important. And I think also it is sometimes there’s some package programs that just use standard procedures for training and don’t individualize it. So they’re trained, but they’re not trained in how to individualize it for each child’s unique needs. So that’s another thing that’s really important in the training programs is that they really understand the child’s unique needs.
And for paraprofessionals, I have some, my parents give the paraprofessionals little cheat sheets and just say, my child responds well to this and that and this and that and doesn’t respond to X, Y, and Z because they’re not always going to read the child’s goals and not even sometimes not even know. So sometimes just a little bit of cheat sheet, a little cheat sheet that’s short and simple and tells you prompt this or prompt that can be immensely helpful for getting the child to have more opportunities and more learning in school or even in the in-home programs.
Dr. Sarah (45:38):
Yeah, no, that makes so much sense. And I’m curious too, if a parent is trying to articulate to a school or to an early intervention program that they’re working with what their needs are or they want to learn more about different approaches, what are some of the sort of keywords you would suggest a parent look for or some of the pedagogies or treatment philosophies that you would say are aligned with this model?
Dr. Lynn (46:13):
So we developed pivotal response treatment, which has outlined, this was developed in the eighties and is still, this is pretty consistent in the recommendations for the teaching procedures. And other ones have come up that use a lot of those same procedures that we developed, that we published about in the eighties and started researching in the late seventies. So there are specific things that are useful that or can be objectively measured. And I would say too that most teachers are pretty good. I’ve worked with so many teachers and teachers don’t want to have children disliking their class. They want to work to have the children engaged in liking the curriculum and not having interfering behaviors. And they’re really good about, if you point out, I had a child that was doing terrible and literacy and getting kicked out of the class a lot because the behaviors were interfering and disrupting the class.
And what we did is instead of having a topic that he wrote about that the teacher chose, we just tweaked it a little bit. So he really liked computers, so he just, he had to write an essay on computers and then he got to play with the computer after, and that changed everything. He would sit in class and write, write, write, and produce these really nice essays. And this can be done with anything, any subject. And you can see just tweaking it a little, what had another kindergartner that they were doing penmanship and the teacher was having them do the same letter over and over again and she would have so much interfering behavior. She wasn’t learning how to write. And so we just tweaked it a little bit and had her write whole words instead of independent letters of her favorite items. And then she could play with it for a minute, then she could write another word. So just tweaking the curriculum, they still have the same goal. They’re still learning legible writing or how to write an essay or whatever the same goal is, but just tweaking it so their interests are incorporated.
Dr. Sarah (48:21):
And I love that so much because what’s inherent in that is a basic trust that the child has within them, this capacity. It’s such a non deficit viewpoint. It’s not like they don’t have this, they can’t do this, well, they can’t do it this way, but we know they’ve got it in them somewhere. And it might not look the same as anybody else’s skillset, but it’s there. How do we tap into it? And I think that that is at its core, what makes your book right. It’s saying it’s hidden brilliance. It is there, yes, we have to figure out how to see it and how to draw it out in a way that is accessible to that individual child, which I think is beautiful.
Dr. Lynn (49:09):
Absolutely. And then you’re going to see a lot fewer meltdowns, a lot fewer interfering behaviors, and a lot faster learning and more responsiveness, which makes a big difference in learning.
Dr. Sarah (49:20):
And you can apply that to absolutely any human being in the world if you think about it, right? I think we all want to be seen for our potential and have someone say, if it’s not here now, there must be some way to get it and I’ll just keep trying to understand and trying to iterate and trying to see you and trying to meet you where you’re at. Whew. That would feel really nice for everybody, I think.
Dr. Lynn (49:45):
Exactly. Yeah, I think that is relevant for all kids. I think one of the important things is that these, there’s a lot of research going on with autism, but a lot of these principles can be applied to all children. And I think as you mentioned earlier, there’s kind of a continuum of the autism spectrum. There’s kids that have developed very, very good language, but just don’t use it socially all the way to kids who have a lot of trouble and are very late learning their first words and don’t maybe a small percentage, maybe five or 10% that even with the best procedures, never learn verbal communication. So there’s a whole range and there’s a whole range of the interfering behavior. Some of them are so intense that it’s really upsetting to the individual to take them away from that, where others are just not a big deal.
They might just do some behavior that doesn’t really interfere with their learning. So there’s such a big continuum, and since we all have some characteristics of autism, especially all of us up here in Silicon Valley, I’m sure that we all need to really just think about which ones are really interfering with behavior and need to be dealt with and learning interfering enough that in interfering with socialization and learning in other areas of our life that maybe need really need addressing. And that’s the same thing with parents. I know it’s one of the things that concerns me is a lot of times when a child is diagnosed with autism, the parents feel more and more isolated. They feel like they can’t go to the park because their child might have a meltdown or they can’t go to the family party because grandma or auntie or somebody has said, oh no, this is, he’s interfering with our dinner or whatever.
Or they feel like maybe they can’t go to mommy and me groups or daddy and me groups or whatever the groups are because their child might not behave like the other children. And I think one of the things that we as professionals and maybe as a society we have failed parents of children with disabilities is not coming together as a team and really supporting them and saying, we know you need to get out there. We don’t want you to feel more alone. We want you to feel more supported because this is where you need it. And all the way through, have them on play dates, have them learn, how can I support them? What can I do? So I think as a society, we have failed our parents of children with disabilities of not really coming together and really saying, how do we keep them in the mainstream environment? I mean, we want them to get jobs as adults. How do we keep them in the mainstream environment as much as possible so they can have these more positive outcomes where they can be, have employment and have friends and have leisure activities later on.
Dr. Sarah (52:37):
Yeah, I think that’s a really good point. And I think if parents are feeling isolated, are there, what would you recommend they try? Now, I imagine things have shifted a little bit, and it’s also probably hard. It’s probably hard as a parent of a child with autism or another disability to feel like, okay, I’d love to do all those things, but do I start?
Dr. Lynn (53:00):
And I think what’s really important is professionals sometimes, as I mentioned with my example of sending kids home from school, if they have a problem, behavior, sending, suspending them. I think what we need to do is turn this around and if there’s a challenging behavior, if the parent says, I have trouble taking them to the park because they may push or they may not play or they may what for whatever reason, maybe they cover their ears when an ambulance goes by or have a meltdown. I think the professionals need to give not one, but three, okay, we’re going to do this, this, and this, because we know that multi-component programs are more effective than just saying, we’re going to try one thing. We need to really figure out a really good comprehensive program to deal with that. And I think professionals, schools tend to take kids out of the classroom.
There’s a PR when there’s a problem, or maybe send them home. And sometimes the in-home programs tend to just work in home and not go to situations. Maybe they don’t do well in the grocery store, but the parents have to shop. So maybe going to the store and buying one thing they really like for a few times and then maybe adding one thing they don’t like and then the thing they like and gradually working up. So we need these really good comprehensive programs that are in the natural environment. So the parents, they report that they’re feeling really isolated and their activities shrink and their friend group shrinks. That should be the opposite. It should be expanding. And professionals, we as professionals should be really helping the parents to give ’em a hold, and we should be providing support in these natural environments with a whole tool chest of techniques that can be used and will be helpful.
Dr. Sarah (54:47):
Yeah, that’s so valuable. If people want to learn more about like, okay, they’re like, oh, I need that. They want to work with you, or they want to learn more about the kinds of work you do, or they want to read your book, where can they find you? How can they get in touch?
Dr. Lynn (55:01):
So we do have a couple of websites for our new book. We have hidden-brilliance.org. And for PRTA, a website that has training, different materials on the motivational components, we have a website that is autism PRT, which stands for Pivotal Response Treatment. So autismprthelp.com.
Dr. Sarah (55:27):
That’s great. And it sounds like this is a place where people can go to access all kinds of resources, and your book just sounds absolutely amazing. So I’m really glad that you shared with us all these amazing pieces of wisdom and new ways of thinking about autism. And just thank you so much for coming on and being here today.
Dr. Lynn (55:52):
Great. Well, thank you so much for having me. I really appreciate it. It was great talking to you.
Dr. Sarah (56:01):
Dr. Koegel and I were talking a lot in this episode about the lack of support that parents of children with disabilities receive. And this can be a major factor leading to burnout. If you are feeling overwhelmed, exhausted, and at the end of your rope, there are things you can do to start filling your own tank. But knowing where to begin can be daunting sometimes. That’s why I created a simple calendar to help you be intentional about addressing your cognitive, social, and emotional needs. Plus, I’ve created a kid version to help you teach your child how they can help themselves to relax and refuel in ways that actually benefit their development and mental health.
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