DEEP DIVE: Dr. Lynn Koegel on the Hidden Brilliance of Autism

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0:42Angela Santomero:Plus, the Northern Lights Arcade spent some quality time there. So your kid who loves the Lazy River and your kid who loves fantasy games will both have a great time. Great Wolf Lodge also offers great dining options and complimentary daily events like nightly dance parties. All under one roof. Unpack the car once and you're settled in to have fun. And with 22 lodges across the country, you're always a short drive away from adventure. We've both had such great times at Great Wolf Lodge. So bring your pack together at a lodge near you. Learn more at greatwolf.com and strengthen the pack. Hello and welcome to Fresh Take from What Fresh Hell?

1:21Angela Santomero:Laughing in the Face of Motherhood. This is Margaret and today I am talking to Dr. Lynn Cagle. She is the co-author of Hidden Brilliance, Unlocking the Intelligence of Autism. Lynn is a clinical professor at the Stanford School of Medicine. She and her husband developed pivotal response treatment, which focuses on motivation. She has been supporting autistic individuals for more than 40 years. Welcome, Dr. Lynn Cagle. Thank you so much. Thanks for having me. And so although we are talking generally about children with autism today, I urge you to listen to this. First of all, almost certainly you have a child with autism somewhere in your life.

2:04Angela Santomero:But also, and Lynn, correct me if I'm wrong, I think that as a mom with a kid on the spectrum, I find that so much of what I learn about helping kids with autism applies in so many situations. There are so many kids who don't have autism who still struggle with transitions, who still may have particular sensitivities. And so I think for our audience, even if you don't have a child with autism living in your home, there will be good takeaways for you from this episode. I think that's so important that you mentioned that because some of the research that we've done on behavior especially suggests that children don't have behavior issues because they're trying to be naughty or things like that.

2:47They're just have behavior issues because they're trying to communicate. And that's kind of true across the board. So there's a lot of things we've learned from children with autism, and it is just a spectrum. All the children have some behaviors that the children with autism do, but a lot of the things, most of them are relevant to all children.

3:06Angela Santomero:I think that's so important and something that I really liked about this book. We talked to Dr. Becky, who her thesis is Good Inside. That's the name of her book. And that the idea of approaching kids, kids are good inside. And so therefore, what we're always trying to figure out is what's blocking that? What's in the way of that? What's making it difficult for them to communicate. And I found it really touching in this book, and I have had this experience myself, that I think a lot of times kids with autism, we struggle a little bit more sometimes to see past this diagnosis and past the behaviors that can be challenging.

3:44Angela Santomero:These kids are also good inside. And figuring out, and you sort of start with this idea of connection and interests and how to begin the process of connecting with kids with autism. So let's start there. Great. Well, we know years ago when I first started in the field, we didn't consider the kids' interests at all. And there's still a lot of programs that are somewhat like that, where they're just not really considering the kids' interests. But we feel like autism, a large part of the issue is a motivation problem. Things are hard for them. It's early communication is hard. And so they really need to be motivated to want to engage because it is so easy to try to avoid if something's challenging.

4:32So we really try to look for where their interests are. And I think this is kind of true of all children. Like we know even children with late talkers or language delays, if you use their interests and go for what they're playing with or what they're doing or what they're interested in, that will have a lot more success. And I guess even children that don't have any diagnosed issues. Also, same thing. I think all of us remember back to school, the times that we remember the most are the ones where we did a really fun project rather than sitting doing page after page after page of a workbook. So I think just really looking for kids' interests is so important, and especially children with autism who tend to avoid or try to escape learning situations because it's difficult.

5:17We've found that if we do focus on their interests in the intervention, we don't really need to worry about any interfering behaviors. They just kind of drop out by themselves. They're not trying to avoid or escape the situation.

5:30Angela Santomero:I read a description a long time ago. I should have cited the author, but I don't remember who it was. talking about reaching kids with autism. And they were talking about how, if I saw you sitting in a park, and I wanted to go to a movie, and I walked up and you were reading a J.D. Salinger novel, and I walked up and slapped it out of your hand and said, we're going to the movie, you know, that you would think, I don't want to do that. I'm doing the thing I want to do. And then it used the example of, if I really wanted you to come to the movie, I might sit next to you reading another J.D. Salinger novel for a long time until you noticed.

6:08Angela Santomero:Then we would start talking about J.D. Salinger. Then I would make the connection. Oh, there's this movie playing that reminds me of his characters. And that the idea of connecting interest to activity, I think, can seem very intellectual. But that example really spoke to me of, okay, I want you to get from here to there, but it's going to take more steps than just, hey, let's go to a movie. Because my go with the flow kid might be like, yes, I would love to, but my kid on the spectrum and my kid who is neurotypical both need a little more convincing than that. And so you use a lot of examples in your book of actual children that you have worked with.

6:51Angela Santomero:Give us an example of connecting through interest? Well, I think that we can do it in a lot of different areas. So usually the first thing that parents notice when they feel like something, well, when they seek out help is when their children aren't talking. They may have noticed a few things before, like some eye contact or affect, but usually when they're not talking or don't start talking or lose words is when they first kind of reach out for help. And that early communication is so important. If we try to make children fit into what we want them to say, they're not going to be motivated to talk.

7:27And most kids that are learning language as they should on those milestones, they might be saying mama and dada and auntie and doggie and things like that. But our kids often, sometimes their first word will be cookie or something on if they want to turn the light on and off. And it's so important even if it's, sometimes people get worried if it's a behavior that they don't like, like the child will turn lights on and off. But we've learned from the research is that it's okay to use that interest, even if it doesn't seem like it's what other children without autism might be interested in. It's okay to learn that.

8:06You can have them say on and then turn on the switch. So you're really just getting in into their own interest, getting those learning opportunities. And later on, when the kids get into school, the same thing pertains. For example, if the kids have to write a story, sometimes a teacher will say, I want you to write a story about your summer vacation. But our children might want to write a story about Pokemon. And as long as they're learning to write, it's more important that they have their interests involved. They'll have less avoidance behavior. They'll come to the table quicker. They'll do more work.

8:39So it's really important, even like math, if they're not interested in learning to add numbers on a worksheet, but they are interested in learning how much things cost and adding numbers that way, you can kind of incorporate that. So just really figuring out what their interests are and incorporating those into as many learning situations throughout the day as possible.

9:01Angela Santomero:I think that's really true. And I also think it can be hard for parents, and I speak for myself, that sometimes when you have a kid who's struggling with anything, but in this case, let's talk about an autism diagnosis, to feel like your goal is to make your child act like a quote unquote normal child. And so therefore, like normal children go to the zoo and you point to the animals and they say the name. But if my kid's interest does not lay there, that it's just going to be a frustrating situation for both of us and that I'm going to come away from that situation saying, my kid doesn't have a fun day at the zoo and therefore I'm robbed of that experience and we're not having a good time and everything's going terribly.

9:56Angela Santomero:That to be able to lean in, it's finding where that experience lives for your kid versus for yourself, I think, which can be hard, that it may not seem interesting enough to turn the fan on and off and talk about that for a long time because the regular kids are at the zoo. And I think that that, it's Amy often says, the pain is in the gap. And I think for me, sometimes the pain was in the gap that like the zoo is good and the fan is not good and that letting those things be morally neutral was challenging for me. Do you find that for a lot of parents? Yes. And I think there's so many things involved in what you just said.

10:37One thing is, is that I don't think as a culture, we've embraced these children well enough to make the parents feel comfortable and really come as a society to help and chip in. And the parents, a lot of the families, and we talk about this in our book, a lot of the families feel more and more isolated because they feel like they can't go to the zoo or maybe they might have a behavior problem if they go to the park or maybe if there's an ambulance that goes by they might have a meltdown so they just avoid and their lives become even more isolated and that's exactly what we don't want we really want the kids to be out there and just giving you an example of the kids need socialization that's they have difficulty with socialization so we need to work on that and learn ways to help them be more social.

11:24Because as we know, verbal adults with autism say they want to have friends. And it's harder to make friends when you haven't had help with it all the way along. And so I had a child recently that I was working with at a preschool. And he loved to sit there and open and close the door. He'd lay on his side and just open and close the door to the playhouse over and over and over again. But the other kids kind of are interested in doors if you call them over. So we said, hey, come over here. Look, you know, this little guy's opening and closing the door. Let's talk about it. And they were taking turns opening and closing the door.

11:58We talked about hinges. We talked about doorknobs. We talked about all kinds of things. So a lot of these activities that are special interests that maybe aren't, you wouldn't think would be so interesting with the kids that don't have an autism diagnosis, you can tweak them a little bit to make them interesting and then have those social goals. So, you know, there is the idea that we can take these interests and turn them into social things. We do this with clubs. We've developed lots of clubs around the kids' interests. And in fact, they're usually voted the president of the club because they have so much knowledge on this particular subject.

12:36And I think I wrote in the book about a little guy that I work with now that scores below the fifth percentile on all the language tests. But he knows everything about drains, everything. I mean, he's so interested in drains. Every time he sees one, he's down on his hands and knees. And it's like incredible how much he knows about drains. So tapping into some of those interests and turning them into a social activity is very important.

13:01Angela Santomero:I want to pause on that. We're talking to Dr. Lynn Cagle, the co-author of Hidden Brilliance, Unlocking the Intelligence of Autism. And we'll be right back. You're listening to this podcast, so I know you've got a curious mind. Here's a helpful fact you may not know yet. Drivers who switch and save with Progressive save over$900 on average. Pop over to Progressive.com, answer some questions, and you'll get a quick quote with discounts that are easy to come by. In fact, 99 % of their auto customers earn at least one discount. Visit Progressive.com and see if you can enjoy a little cash back. Progressive Casualty Insurance Company and Affiliates.

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15:12Angela Santomero:That's 10 % off your first order site-wide with code FRESH at oseamalibu.com. There are so many examples in this book that I think are really helpful. I think sometimes, you know, the language around autism has changed to some degree and you'll hear autism is a superpower and it actually makes you special. All things that I happen to believe, but I think when we get too facile with them, it's we're skipping the important work that you're talking about of actually facilitating these connections. And my sister-in-law, who's an educator, was telling me when one of my guys was struggling in elementary school, the day is set up in elementary school in a way that is almost maximally difficult sometimes for kids with autism.

16:04Angela Santomero:Because she said, as an adult, nobody says to you, okay, Margaret, it's art time, 40 minutes of art. Okay, stop art now. You're done. Like, oh, you were into your painting? Too bad. Put it away. it's time for archery like archery what okay I guess I'm shooting arrows now I don't know what I'm doing okay now it's time for English now social studies and that some of those things I'm not interested in it at all some of those things I'm interested in and don't want to stop just because there's an arbitrary time limit some of those things other kids are really good at and I'm terrible at it and that makes me feel bad and then some of those things I'm super interested in and then a bell rings and no more of that for me.

16:45Angela Santomero:And that that's nothing like how adults live their lives. I get up in the morning and I do the one thing I'm pretty good at, which is make a podcast and run a company about podcasting all day. And then I make dinner, which I'm medium good at, and then I relax. And so I think that this book taps into just first of all, recognizing the water that the kids live in, like recognizing the environment and where the environment is difficult, but then also finding, connecting them to learning in a way that I don't see happening as much as I wish. I think that's really important. And I think we tried to write the book to bring out the best in every child because some children, you know, we do see these really strong skills where they're really good at math or really good at music.

17:37But some children, we don't really see them right off the bat. Like my nephew, we didn't really, you know, when he was younger and nonverbal at two and a half, nobody saw that he would, he had a lot of interfering behaviors such as throwing toys. And I noticed that he could put them together so quickly. And I thought, this kid is really smart. And I've had two kids in the last couple of years that I've worked with that people said they're never going to start using verbal communication. And after two years, they started using words and that was two years of really working on those words. So kids, but we kind of had a feeling because we could see that they could tune into certain pictures and visual things.

18:19So we had a feeling that they had some capabilities. And while some kids will learn, start saying first words in the first session, other kids take a lot longer. So regardless of the behavior, I think it's important to just really try to look at what these areas of strength are. And we're just so used to, especially my profession and other professions that work with special needs children or children with differences, I should say. We're kind of trained to look for what's wrong. We're not trained to write and look for what's right. And that gives us a really good starting point to really look at all these things that are going well.

18:59And then we have a place to start and say, what can we do based on these things that the children are doing well?

19:05Angela Santomero:And will you tell that story from the book? Because it really spoke to me about your nephew being assessed and breaking the toy and like what you saw in that experience, which was different than what the assessors saw. Yes. So in our very first session, when he was getting diagnosed by the state, this was back when California state paid for services. Now they go through the insurance, But they had some assessors from the state come out to his house, and we had this ramp that he loved to put the balls down. It was taller than him. And he'd reach up, put the balls down, and watch them roll down.

19:43And the assessors were saying, does he say any words? And he had said an echolalic word here and there. So I thought, well, you never know. So I held up the ball and said, ball, to see if maybe we could get him to say that before I gave it to him. and he got really frustrated and he took the toy, picked it up and threw it down as hard as he could. And it must've gone into at least 20 or 30 pieces. They were all over the floor. And when it's somebody that's that close to your heart, you really pick up on the emotions of the assessor. And I saw their eyes get big and he, and step back and like, Ooh, you know, kind of moan, you know, you could just feel that they didn't really want to be in this room with this.

20:25Not the right choice. Yeah. So, but then he looked horrified that the ramp had broken into so many pieces and he put it together so quickly. I could not believe it. Your nephew did, this little boy. Yeah. My nephew did. He put it together and I would have had to get out the man or Google the manual because I had no clue of how to put together. But the report came back and didn't even mention that. All it mentioned was his, you know, disruptive behaviors and other few disruptive behaviors that he had that, you know, to me was this idea that he could put together this puzzle or this, you know, maze was so incredible that that should have been like the first paragraph, but he did do well.

21:11I mean, looking at those strengths, it was a lot of effort. And as you mentioned earlier, you know, it's not like you can take him to the zoo and they're going to learn because it's just, you just talk about things. We do have to set up these opportunities. We try to have the opportunities in everyday routines so the parents don't feel stressed about, oh no, I got to sit down and work with my child. Just, we try to have parents learn how to do opportunities throughout their everyday routines. But getting back to our original point, we did a lot of work with him. He did, he's in college now. He did really well.

21:44He's, his teachers loved him. he's the nicest person you could meet. I mean, probably I would say that most of the people with autism that I know are the nicest people you could meet.

21:55Angela Santomero:Yeah. What I like about that story, and I think I keep coming back to it because for me, this was the aha of the book, is that I feel like with neurotypical children, the kind of, okay, we've solved a lot of stuff and now we're on to communicating through difficult behaviors, be it with our teenagers, our two-year-olds, but that somehow some special needs, especially autism, has been left behind in that. Like, well, they, we've got to stop that rocking that they're doing and get them to focus on the blackboard. And it seems to me that this book, it really is about, I've had this experience with my own child who in first grade, I was told by a teacher, like, well, he doesn't even know his sight words, you know, because that's what we care about, the sight words.

22:43Angela Santomero:And I said, do me a favor. Tomorrow, if you have a quiet moment or have one of the aides, go sit within the back, hand him a book he's never seen before. He'll read it to you. He doesn't care about sight words because that's not how he learns. He knows how to read, but he doesn't either, I don't know if it's a lack of capability. I don't know if it's a lack of interest. But yes, he does not want to stand while you recite words. On the flip side, I understand that they're trying to manage 25 kids in a classroom and that a kid who needs to be reached in a very special way makes that difficult. So I wonder what you think about in terms of the dynamic within a classroom.

23:28Angela Santomero:Inclusion, we've been pushing for inclusion, which I think is very important to have kids mainstreamed and with their peers. At the same time, is it costing some opportunities for kids who could use more specialized, perhaps, instruction? Well, I think as an educator, I can take some of the blame on this as I'm not sure that we always teach our teachers properly. I like the idea of inclusion. I like everybody being together. All children have challenges in some area. There's no such thing as a perfect kid or a normal kid or a typical kid. Any parent that tells you their kid is perfect. I think we've got that.

24:07Angela Santomero:Yeah, no, I think everyone's nodding. We got it. Yes. As parents, we all go through ups and downs with our children, and they have weaknesses and strengths. and I think that the children with autism, I think as educators, we haven't gotten to the point where we're really training our teachers well enough in individualization. Every single 25 or 30 kids in that classroom is going to be at a different level. And I think if the teachers learn to individualize it, it helps all the children in the class. And it's kind of like a little, when you're washing the dishes, if you have a little tiny baby, you're not going to have them put the glass in the dishwasher, but you might have them put their plastic plate or their plastic fork in there.