Are you parenting a child on the autism spectrum. This interview will give you insight and hope. We talk with Dr. Lynn Koegel, a clinical professor at the Stanford University School of Medicine, and author of Hidden Brilliance: Unlocking the Intelligence of Autism. She is the Editor-in-Chief of the Journal of Autism and Developmental Disorders.
In this episode, we cover:
Hidden Brilliance: Unlocking the Intelligence of Autism
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Please pardon any errors. This is an automated transcript.
Dawn Davenport 0:00
Welcome, everyone to creating a family talk about foster adoptive and kinship care. I'm Dawn Davenport. I am the host of this show, as well as the director of the nonprofit, creating a family.org. Today we're going to be talking about autism, specifically helping autistic kids shine. We'll be speaking with Dr. Lynn Koegel. She is a clinical professor at Stanford University School of Medicine and author of Hidden Brilliance Unlocking the Intelligence of Autism. She and her husband developed pivotal response treatment which focuses on motivating individuals with autism. The Koegels have received numerous awards for their work, including Children's Television Workshop, and Sesame Street parents sunny days award for brightening the lives of children. Dr. Koegel appeared on the hit show Supernanny working with children with autism. She has published over 125 scientific articles and chapters, and eight books. She is currently the editor in chief of the Journal of autism and developmental disorders. So welcome, Dr. Keogel, to creating a family.
Unknown Speaker 1:06
Thank you so much for having me, it's a pleasure to be here.
Dawn Davenport 1:09
I want to start with a quick word about language. There is so much diversity within the autism community of how they prefer to be referred to do they want to be called autistic do they want to be said I have autism or being on the autism spectrum or just being on the spectrum or a person with autism spectrum disorders? So having been schooled in the person's first language for so long, I find that I struggle a little with this. But it to be respectful, we are going to skip around, and we'll likely probably use them all. So I just wanted to say that at the beginning. So let's start and talk about there. It seems to me that there are so many different variations in the way autism presents in humans, and the degrees of the impact. So can you talk to us about what are some of the variations that you see in the way autism is present?
Speaker 2 2:03
That's a great point. Because it is huge, there are so many variations, we see the there are two core areas where they have to have challenges in order to be diagnosed with autism. And the first one is social communication. But that compasses a huge range from children who are completely nonverbal, or adults who have never learned any spoken language, all the way to people who are very, very verbal and kind of had all their language structures fall into place at the right time, but might have a little more difficulty with the social part of the social communication. So that's huge. And the second area is repetitive behaviors, restricted and repetitive behaviors. And that ranges all the way to some individuals will engage in repetitive behaviors all day long, such as rocking back and forth or flapping their hands where others may be it's more related to a certain interest. So they might get into a topic that's really interesting to them and just accumulate lots of information on that subject. So it is a huge range of people that qualify for the diagnosis,
Dawn Davenport 3:14
and the degree of disability caused by as well.
Speaker 2 3:18
Absolutely, some people have very little trouble. And you know, we always joke a lot of college professors, a
Dawn Davenport 3:27
lot of people in Silicon Valley, a lot of entrepreneur, a lot of billionaires,
Speaker 2 3:32
a lot of very it. And then of course, we have the opposite end of the spectrum where some of the individuals less and less every year because the treatments getting better. But some individuals need quite a bit of support their whole life. But I think as I mentioned, we're having more and more people talking over the years and more and more people slowly but more and more people getting employment and focusing on self help and independent living. So I think we're moving along and doing a lot better than when I first started in the field.
Dawn Davenport 4:03
So it's good to hear of progresses. Yes. So what are some of the symptoms or signs of autism at different ages? And I think there's some debate on whether you can with an infant, can you see signs, particularly with those who are not on the very far end of the autism spectrum? So let's go just kind of, I'll throw out some general ages. First, let's talk infants. Do you think it's possible to identify children who are going to be autistic or who are autistic as infants?
Speaker 2 4:35
That's a very good question. People are trying to look at these characteristics younger and younger, so we can start intervening earlier. But children little infants have huge variety of temperaments. Yeah, so some of them, you know, just are more colicky than I am. Of my two kids. One was very colicky and one was not so it's kind of hard when they're very young to tell just because of the temperament that During the first year of life, the children that will later go on to develop autism are, generally they don't begin pointing, or they might not have as good of eye contact, or they might be more interested in staring at objects instead of their an a person. And they might not do as much babbling. So we are seeing some of these characteristics early on. And most parents whose children are later diagnosed with autism report that they saw some differences pre linguistically before, you know, during that first year of life, and especially if they've had another child, they might see a few differences. But it is hard to tell at the very in the very early months of age, but like I said, usually the motor milestones are pretty much on time, that's just some of those things like low levels of babbling and not not looking at items and back at their parents to kind of share attention and things. So they might be more focused on their toys, or a toy. So we can kind of see some of these early characteristics.
Dawn Davenport 6:06
What do parents generally start noticing? And start becoming concerned? At what age and what are the symptoms that bring parents to be concerned?
Speaker 2 6:15
Most of the time, it's because the children aren't developing verbal words. So we all know that somewhere between 12 and 14 months, or one year, around a year, they'll usually develop their first meaningful word, where they'll say like maybe donkey or mama or dad bad start saying some of those words. And generally, children with autism are a little late on developing those first words, that's usually a first red flag of parents. So the first concern of why they will bring their children in as because some language delays and maybe around 18 months, if they don't have any words, then they're really start getting concerned. The other thing is sometimes the kids, they have, like I said, sometimes hidden, brilliant, so sometimes they'll say, like ABC, or maybe 123, or memorize a nursery rhyme or a little bit of a happy birthday song, or some things like that, that are younger than expected. So sometimes the parents think, Wow, this is great. They're, they're doing really well, which is great, because it means they have a really good memory. But also, if they're not using that communication in the social way, and those first words in a social way, then the parents might notice and bring them in to their pediatrician or, or a speech therapist or somebody that can kind of see what's going on with their communication.
Dawn Davenport 7:36
So it's usually language, that is our first cue that the child is struggling. So then as we progress up to let's say, in their preschool and kindergarten, your sight for kindergarten, what are the symptoms that we might see then.
Speaker 2 7:51
So if they're not, usually if they're in preschool, like two, or three, or four, and they're not starting to talk, they'll get caught up, they'll get, you know, some support, but let's say the kids have pretty good language development, like a lot of people on the autism spectrum do, then it might be later on where the teachers like the maybe when they're four or five, the teachers might notice while they're not really too interested in other children, sometimes they'll want to spend more time with adults than other children, because they just feel more comfortable with adults and can converse better with adults. But the peer to peer interactions are really different than the adult child interactions.
Dawn Davenport 8:36
But that's a hard one because it like only children or children who have been around a lot of adults, we, we tend to say, well, they just have they're more comfortable with adults because they're around it. So that's a hard one at parents can use that as a, that's one that they could think of other reasons for.
Speaker 2 8:52
Exactly. And and it's, you know, there is a, it's all a spectrum. So it's kind of what we're trying to go by is is it interfering with your daily life, and kids do need to learn how to get along with their peers. So if they're only interacting with adults, then it's a little bit of a concern, because they need to learn those peer interactions all the way through. So you'll see, unlike kids that may be prefer adults that don't have autism, they'll still play with their peers, so but with the children with autism, you oftentimes see them in preschool, maybe they'll be alone sifting sand or opening and closing the door, the play house or isolated walking the perimeter of the playground. So they're just not engaging the activities and the social activities that the kids without autism are.
Dawn Davenport 9:41
And we would see this I would assume, continue through let's talk about school aged children. I'm assuming that social isolation or the failure to interact socially, would continue. How about academics and other things we might see. And again, let's keep reminding ourselves this is a spectrum disorder. Therefore, we could see the People who from an IQ standpoint if that's how you're choosing to measure weigh on the very, very high IQ, as well as those who are developmentally delayed.
Speaker 2 10:10
Absolutely. And we see children that far outperform their peers academically. Yeah, we see a lot of those kinds of kids in school, and they just have maybe some challenges with socialization. And we also have other children that maybe are good at decoding. But since they have language challenges, they might not be able to either understand what they're reading, or maybe even retell what they've read or answer your questions about what they've read. And so we we do see a range of academics, some children, you know, are very good at math calculation, maybe not so good at math problems, if they have that communication challenge. But we did talk about in our book, a lot of ways that are helpful in teaching the kids like using their interests is really helpful, because then they like engaging in the, in the subject rather than avoiding it.
Dawn Davenport 11:03
And is it true that autistic kids often have, especially those who are not on the very extreme level of the spectrum will have intense interest, and therefore on specific topics. And if you can tap in and you talked about that in hidden brilliance, you can, if you could tap into their interest and teach off of that, then they tend to learn better,
Speaker 2 11:26
that's really critical, because if they do have intense interest in, they're more likely to enjoy those and less likely to enjoy the ones that aren't interesting. So tapping into those for like reading, we found that with teachers, if, if they're giving like a reading assignment if we get a book of their interest, and this, of course, is true of any child, but especially critical with children with autism, who seemed to kind of lack this motivation in some ways. So we need to put in these procedures that are known to improve motivation, like child preferred items, even if it's a writing assignment, like having them write about something they prefer, preferably something that will have some kind of natural reinforcer. So for example, if they like playing, you know, a certain computer game, they could write an essay, or even a sentence or even a word, depending on where their what their target goal is. And then after they write that being able to have a few minutes on the computer, so tying those things into meaningful and relevant activities is really helpful for their motivation and helpful to help them progress faster.
Dawn Davenport 12:32
You know, we so often, and this is, I think, the, the basic premise of hidden brilliance, we so often focus on weaknesses of children in general, and as well as with children with autism, and overlook their strengths. Why do you think this is a particular problem for kids on the autism spectrum?
Speaker 2 12:52
It's particular problem, because they do have a lot of areas that are challenging for them. But they usually usually you can find a lot of areas where they have strengths, but people tend to kind of overlook those. In fact, it's interesting, I was an IEP just this week, and the child had annual or tri annual testing. And one of the testers was saying, you know, I tested him in one area, and he came out above average, and I thought maybe I missed something. So I gave a lot more tests in that area. And it was sort of like, the whole premise was to look for something wrong, instead of look for something, right. So I think I mean, I'm trained as a speech language, specialist, and also my PhDs in psychology. And we were really trained to give all these tests and see what's wrong with the child, we never really were trained, of course, I went to school a while back, but what was the focus on what's wrong and what needs to be fixed instead of what's right and looking at areas that may not show up on a standardized test, we gave some examples in our book, like some of the children, I have a little guy that knows everything about toilets, I never even thought about toilets sitting on the floor versus hanging on the wall before, how they flush and how they work and all that. And we've had kids that are interested in the pot stocks and the freeway, those little bumper things and they know everything about them, the chemical composition, everything, you know, any way you can take lots of topics that don't seem like they're going to show up or probably won't show up on a standardized test that our kids maybe have tons of good cumulated tons of information about. And we tend to overlook those a lot. Instead of saying, Wow, if this kid is really knows a lot about the pop stocks or the drain system, or trees or whatever the topic may be, let's use that and let's figure out how can we teach math through this topic and how can we teach reading and all these other areas using those really
Dawn Davenport 14:54
intense intense interest? Yes, yeah, absolutely. I want to tell you About a resource that creating a family provides that you may not know about. And that is our interactive training support curriculum for foster adoptive and kinship families. What that is, is a curriculum as the name implies, that allows you to either train or support adoptive foster or kinship families. It can be used with support groups, it can be used just as a training. It is a video based training, but it is also participatory. We have a library of the curriculum, there's 23 topics in the library. Each of the curriculum comes with a video, a facilitator guide handout, and an additional resource sheet. If you need continuing education credit, you can get that as well. So you can find this at our website creating a family.or, you can under the training tab. I'm glad you brought up testing, because there seems to be it doesn't seem to be as it's it's hard to know, what is included in the testing. So how is autism diagnosed? And then what are the limits to this testing,
Speaker 2 16:08
it's basically diagnosed by the behavioral characteristics, there are no blood tests, or no chromosomal tests, or anything that will tell you physiologically a child has autism. So it's mostly diagnosed by behavioral characteristics that fall into those two categories. And what makes it a little challenging is that, as you mentioned earlier, it's a spectrum. There's kids all the way from very mild to very significant. And it's really, I think we're trying to look at people are trying to look at where, how much it interferes with their daily life and their ability to participate and make friends and have leisure activities. Because a lot of people that have a lot of those characteristics have no problem at all, with, you know, developing relationships and going on to a nice career where it's other people does seem to interfere. So we're really looking at how much they interfere, especially when it's a more mild, winner, more mild characteristics.
Dawn Davenport 17:10
That's good. I mean, it's wonderful that we're focusing less on labeling and more on how does it interfere? So what can parents do to make sure that the testing more clearly reflects their child's strengths as well as the weaknesses?
Speaker 2 17:26
I think what's really important is to instead of looking at what they're not doing is to really look at what they are doing. Parents can be instrumental if if a child's being tested. I think first, it's really helpful to do more observational observations rather than just testing because a lot of times for our kids, the testing is boring, and it's not meaningful, and it may not tap into their interests. So giving them a standardized test. In fact, I have one family right now who's was so upset because their child came out in the fifth percentile on all the language tests, but I said he can talk up a storm on certain topics. But that didn't come up on the standardized language. They
Dawn Davenport 18:10
didn't ask him about, yeah,
Speaker 2 18:13
they didn't happen to be in the pictures on the test. So I think it's just really critical to have parents make sure that they really let the tester know or the school know, what are the things that child does? Well, and it may seem small to a parent, but it can be huge. So let's say a child is 18 months when you expect them, maybe they have, you know, a good number of words. And they only have one word. Well, instead of saying they only have one word, we need to say they do have one word, how did they get that word, and let's go from there. So figuring out how the kids learn things, and, and what's going to motivate them to learn more is is really critical. And then again, looking at every strength, like we have some kids that score really low, but boy, they can figure out how to unlock doors and how to, you know, do a lot of things that require a lot of skill.
Dawn Davenport 19:09
Take the noise machine apart from other things that they get. Yes. Work the phone, the iPhone. Yeah. Let's talk some about struggling with communication. social communication is common with people with autism. What can parents do to help improve spoken language with their child?
Speaker 2 19:29
Well, we have a lot of great there's been a lot of great techniques developed. And again, these tap into the kids motivation. So for example, if the children like a particular toy, that makes musical sounds, they might teach the child to say on and then turn the toy on. And that can even be more sophisticated. Whereas the child's at the sentence level just to say, Mommy, can you please turn the toy on? So really taking those interests and really Another thing is providing a lot of opportunities. I think it's hard. It's really hard for parents early on, because the children that don't have autism and have language that's coming in, as expected, will initiate a lot of interactions. They'll come to their parents, and they'll say, you know, Mommy look at this, or, or, you know, just tried to get their attention and really are very interactive. And children initiate interactions that result in more learning, like saying, What's this, or what's that. But children diagnosed on the autism spectrum, a lot of times won't do that. So the parents have to create all these opportunities. So if the child likes a car ride, they instead of just taking them to the car to help develop this communication, they might want to pause at the door and say, Oh, pin, and then maybe when they're putting on the seatbelt, safe seatbelt, and maybe before they drive away, say, Ready Set and wait for them to think go. And just really provide a lot of opportunities, we, we recommend that they do this within their natural activities. It stresses parents out if they feel like they have to sit down and work drill their child or work with their child. And we we don't think that's as helpful as doing it all day long. Within the everyday activities,
Dawn Davenport 21:16
everybody in their life doing it as well.
Speaker 2 21:19
Absolutely, if the baby serve a daycare, have a extended family, everybody that can pitch in and help out. And, you know, having said that, I should also add that we have a little chapter in the book about talking about how society can come together in general, and really support these parents. A lot of times the parents feel like their circle of friends gets smaller because their children maybe, maybe they have some meltdowns in public or so they don't maybe don't take him to the park, or maybe they don't get invited to all the birthday parties. And this is not how we should be as a community, we should include them as often as possible. They need playdates, you know, for parents that don't have that have children that, you know, aren't diagnosed on the autism spectrum. We all have a little bit of those characteristics. But for children that aren't diagnosed, you know, to have invite them over so that they can get those practice and in playdates are really important, and at lunchtime at school we need they need support, they need to have someone there helping them really learn how to socialize, so that we feel like it's really critical.
Dawn Davenport 22:26
I want to thank what I think is one of our oldest sponsors partners of this podcast, and that is children's connection. They are an adoption agency providing services for domestic infant adoption and embryo donation and adoption throughout the US. They also do home studies, and posted options support to families in Texas, thank you children's connection. You've named a couple of things to do on helping kids because it's social communication skills. So you've named a couple of things that are effective at helping kids understand how to socially interact, can you share a few more?
Speaker 2 23:04
Sure. So we have a pretty good success rate using our motivational techniques that are described in the book for getting first words and getting the kids talking. But we've noticed that most of the times the kids with autism, partly because of the way we teach them, and partly because of their interests, will usually start by saying first words that are around their interest. So like children without autism will might say, Mommy and Daddy is the first word and their family pet but children with autism, maybe they love light. So their first word might be light, or on and so on and so forth. Around, usually within the first 10 or 20 words, children who developing language as it should develop, will say dis or dad, which is a specific cue for a parent to label the item. And that's how they get huge vocabularies. You hear little kids going does this and sometimes they know it, it's just for fun games. They really want to learn the word. But it still is a nice social way of interacting. And we found that the children with autism, many of them weren't using those initiations that result in learning more language. So we have spent quite a few years researching motivational ways which we discuss in the book to teach things like what's that by getting their favorite things and putting them in a brown bag? And then prompting them to say, what's that and then fading out these favorite things, so they enjoy asking the question, and so that they can be taught how to ask these questions. So they're not just using communication for requests, but they're also using it for these kind of initiated question asking interactions that will bring them more language learning and I think that's helpful with all kids, but most many kids will develop it on their own. I remember my kids I kind of encouraged them to ask a lot of questions but children with autism They may have to be specifically taught to ask questions using techniques that have these motivational components. So they don't shy away from it because we really feel like communication is difficult. And it's like for any one of us if you took your most difficult subject like chemistry, let's say, and someone said, Okay, now we're gonna sit down and have you do chemistry all day long. You know, 77 days a week, 24, you
Dawn Davenport 25:24
show me now.
Speaker 2 25:28
So it's for them, it's sort of like communication is hard. And we're saying, Okay, you got to talk all the time. So they just tend to want to avoid it. And if someone says hi to them, and they say, hi, back, they'll say, What's your name? Where do you go to school? How old are you? And it's a lot of effort. But if we use these motivational components, then it's fun. They're using their interest by using things they like by using things. Even. I mean, for some children that don't seem like they have any interest. Sometimes their first word is bye, bye, because they just want you to go away. Or no, yeah, that's okay. A word is a word. As long as we're getting in those words, we don't care what they are, we just want to get a lot of words in there. So but most most of the children will have a lot of interests that they, you know, they'll play with different toys and have preferences for certain toys that you can use to get those first words. But the initiations I think, especially the question asking, is really helpful, to kind of give them more functions of communication, and also kind of round their language and get it more social. So it's more back and forth, instead of always the adult initiating
Dawn Davenport 26:35
the initiative. What are some techniques to help children learn to relate to others, especially other peers?
Speaker 2 26:43
Well, there's a lot of research showing that we kind of go for mostly their preferred interest on this, too. So there's some research that actually was done at Stanford by some of my colleagues that showed that they can do these components, like having the kids ask for things to their peers, which really helps their social interaction, and kind of do turn taking and go back and forth. And that can really help it get started with peers. And then as they get a little older, like elementary, middle school, high school and college, we always try to develop clubs around their interests. So if a child, let's say, has an interest in history, we might do a history club, we have a little guy that had an interest in flags, and you know, every flag and coins, every flag and every coin from every place in the world. So we developed some games, around coins and flags. So you can develop activities around their interests. And if you tweak them a little like, let's say, we had one child who liked cartoon characters, but it was more like a little bit younger interest than most of the children his age had. So we developed an activity that was drawing the cartoons, characters, that cartoon characters so that it would kind of bring in the other kid. So sometimes you have to tweak them a tiny bit. But if they have this basic interest, you couldn't get the kids really interested in the activity.
Dawn Davenport 28:07
Yeah, that makes sense. It seems like the inability to express their needs verbally, can lead to behavioral issues, screaming aggression, tantrums, what works to help kids and improve these behaviors.
Speaker 2 28:21
Absolutely. And I think we've moved forward to over the decades since I've been in the field, where we used to think, oh, they have to be punished. Now we know is typical with all kids, like, if you have a little preschooler, that's no has no language challenges, and they're having a meltdown, you say, Tell me your words, use your words, tell me what you want. And usually they get it. But if they have a communication, challenge, or delay, they might not that might be challenging for them. So the important thing is to really look at the function of the communication. So if something is too difficult for them, like maybe it's an assignment or activity in school, to have them learn to say help, or I need help, or, and if they're maybe having a meltdown, because they're frustrated, because they can't get an object that they want right away, is to teach him to request the object and then put in a delay, so they know they'll get it but maybe right, not this minute. So I think it's really important to look at the function. In the end, most professionals now have been trained to look at the function and not to just punish the kids. But I will say that I see too many kids being sent home from school being suspended because they have these meltdowns, or they tell the parents to pick the kids up and the kids are like, Yes, I got out of math or I got out of writing or whatever. So it ends up kind of functioning as a reward for the children or the sometimes just sent out of the classroom when the that's the last thing that should be done. Really they should. Of course, first you want to figure out the function. Why is that attention? Is it to avoid a task is
Dawn Davenport 29:58
it what's your budget? If you're trying to tell us Yes, exactly.
Speaker 2 30:03
And then develop a equivalent behavior that's appropriate. So for a child that doesn't have any verbal skills, they might have a sign or, or something that they can use to say I need a break. Or if they're verbal, teach them something that's easy and quick, because aggression and behaviors like that are quick, and they're effective. That's why the kids confusing.
Dawn Davenport 30:25
Speaker 2 30:27
I do see sometimes speaker plans that don't have a replacement behavior, they're not teaching the kids a replacement behavior. And generally, those behaviors will never go away if the kids don't have an appropriate way to tell you that they're frustrated.
Dawn Davenport 30:40
So give us an example. Either from the book or outside of replacement behavior, well, let's say a behavior that you want to extinguish a replacement behavior and and how that would work?
Speaker 2 30:54
Well, I'll give you a good one that I think would be a good one. Because, you know, a lot of kids, people think that children with autism don't want to socialize. But we actually know from verbal children with autism, that they really want to have friends. And they want to have playdates, and they want to have as they grow older, want to have significant others. So it's really incorrect. If people think they don't want to socialize, yes, it may be challenging for them. But they really want to have these social interactions and contacts and friendships and leisure activities, and so on and so forth. And as an example, I've seen children with autism that are in preschool, that they don't really know exactly how to socialize, because their language might, their communication, language might be a challenge. And so they might go on the playground and shove another child, or hit them. But if we look at the functioning, we're like, whoa, they really wanted to play with that other child. So teaching them a replacement would be if they have a word or two to say play, and then some on top can get in there saying, Oh, he wants to play with you, or turn my turn or your turn and teaching them to exchange toys. And really, so that's a function that people might think, oh, no, I have to take my kid home, because you've just pushed I can't go to the park anymore. But really it was the function of it was to kind of engage socially so that that's a good example. Because I think that's example most parents can relate to.
Dawn Davenport 32:22
Yeah, yeah. Another thing you talk about, is you call it environmental manipulation. But it's, you know, it's basically it's what we do with two year olds oftentimes, doesn't always work, sometimes three and four year olds, about two year olds, they want something or whatever, if you can change the environment, oh, let's go to the kitchen. And then all of a sudden, they forget. So it's the changing what you can, is an effective technique as well.
Speaker 2 32:49
Absolutely, there are a lot of techniques, some children do well with just being redirected for a few minutes. And I always tell my families that I work with a fifth school calls and says, Your child's acting up, period. Yeah, the question to ask is, tell me three suggestions that you have of ways you're going to work on it. Because really, we should, you know, special educators should have training, we all have training and how to work on it. And sometimes we get in the habit or you know, of kind of just sending a kid homework, what we really need to do is figure out number one, what the function is, but number two, what are things that we can do that decrease that problem. And sometimes, it'll be a certain person that just like I have a little guy in middle school that has one aide that really is corrected with them. And he has all kinds of behavioral problems with her, but he doesn't have them with anybody else. Because they're more supportive and more reinforcing for him and say, Great job, you do a good try. But the other one she'll even start out with, I don't want to have any trouble today in X subject, which is kind of setting him up to feel badly. So really, sometimes, you know, we don't always train our paraprofessionals as well as as to we should and they spend the most time with the kids. So, you know, really, just making sure that there's enough training and that people have enough tools in their toolkit that we can try different things and see what works and sometimes for any child, I will say not sometimes, but the literature shows that for children that have interfering behaviors that interfere with learning, which may be aggression, or self injury or property destruction. The literature shows that one program isn't likely to be as successful as several programs simultaneously. So one might be what are we going to teach language wise to replace it? One might be what's the function and replacement be for? One might be like a redirection or changing the environment a little bit with certain people so or certain top maybe it's the curriculum so really to look at what can we do to change it up and make sure that there's a multicomponent program going for the children that has lots of different interventions going at the same time. So we can get rid of that, that interfering stuff quickly.
Dawn Davenport 35:07
Yeah, because the interfering stuff is turning others off and providing more, not only can they not learn, but they're also getting labeled, and they're the ones who the schools want to send home.
Speaker 2 35:20
Yeah, and I think one of the nice things is the neuro diverse community has taught us it is working on teaching, the larger community that some things might not matter that much like if a person's comfortable or comforted by some kind of repetitive behaviors, maybe it doesn't make that big of a deal. But if it is a behavior, that's more significant, like aggression, or self injury, or property destruction, those are really important to really address immediately, because the longer they go on, the more the individual will be excluded from community settings. And I mean, I have some adults that have come to me and say, I can't get a date, and I don't know what I'm doing wrong. And I'll look and maybe I can pick out some things like some repetitive behaviors, and I'll ask them, Is this something you want to work on? And most of them will say, yes, they do. So if if it's important that for them to work on and they feel like it would be helpful in their life, then I think the mild ones are okay to work on to but if they feel comfortable and say, No, I, this is something that is self soothing, and I don't really want to work on that. That's, that's also fine if it's not interfering with things. So it's really an individual choice.
Dawn Davenport 36:34
Are you a subscriber to this podcast that creating a family.org podcast? If not, you should need to be it. So you know that you can gain access to our extensive archive of, of shows on all sorts of topics relevant to your parenting, or your journey, we interviewed leading experts on the topic that's, that really mattered to you. And we are now at we started in 2007. So we have what's many, many, many years of, of content for you to choose from. So to access this content, subscribe at whatever app you're using to listen, you can easily subscribe to the creating a family podcast. Something else you talk about in this chapter is priming. What do you mean by priming? And can you give us an example?
Speaker 2 37:24
Yes, I really like priming. So primary, we kind of came on it by chance. We had one of our grad students didn't have a place to live in the summer. And so one of the family said, Well, we have an extra room in our house, why don't you just come and live with us for the summer, and she was thrilled. And it was kind of an exchange for helping with their son. And so she took them to preschool and help them a little bit in the mornings and things. And one of the things she notices, he had a lot of just interfering behaviors that disrupted the whole classroom during storytime. But just by coincidence, some of those stories at preschool, everybody has like Brown Bear, Brown Bear. And some of those stories are real common. And she noticed that if that was one that he had at home, and was familiar with it, he always listened attentively. But when the teacher brought a book that he had never seen before and never been exposed to he started rolling on the ground screaming and disrupting the class. So we did a systematic study with that. And we kind of did some sessions where we had the st read the same book the night before, where we added more children that were having difficulties in circle time, because it's highly a lot of language and circle time, right. So if we read the book the night before, they had very little interfering behaviors, versus if we didn't read it. And that was kind of a double blind study. So the teacher didn't know and the parents didn't know whether the book was going to be read the next day. So it was very consistent. So we've expanded that to I think we published a study in academic areas that you can kind of prime them and kind of go over some things the night before, sometimes a school can do it. Or parents sometimes want to do it and can be after school or before the subject is presented. But I liked this technique, because number one, the kids do better academically when they're primed. And number two, without even having to work on the interfering behaviors, they kind of go out by themselves, they kind of fall out by themselves because the child is engaged and interested. And it's just so much nicer than having to play catch up and having to worry about all these behaviors
Dawn Davenport 39:34
of a negative. So why does priming work? Do you think is it because the child is overwhelmed by the new material? And it's if they've experienced it before, they then they're not overwhelmed? Why do you think priming works?
Speaker 2 39:49
I think that's absolutely correct. I think that if they're familiar with it, and they don't love it, they won't exhibit this avoidance behavior where they Oh no, this is going to be hard. I'm just going to leave liven up this class by rolling around on the floor and coughing, you know, and making it so that we don't have to engage in the sitting here while I listen to something that's over my head. Whereas if they can pick up a word here and there and kind of get the gist of the story, or the assignment, that's great and priming, you know, some of our kids, we've had children that if you really look at the reason they're missing problems, sometimes it's because they can't read the directions of, of a worksheet or a test. So some of the kids just need to be primed on that. Sometimes, if they're primed on the first few questions of a test, they do much better on the whole test. So really just giving them that comfort and little bit of knowledge so that they feel comfortable with it, and can go ahead and try instead of doing all these behaviors to avoid the activity.
Dawn Davenport 40:54
Interesting. Well, I wanted to spend some time talking about working with the schools, it is a often a source of frustration. In specific What can parents do? Because you're correct, it schools, some do a wonderful job. Others are quick to say just take this kid, listen this kid home, because this kid is just it's so disruptive or whatever. So how do parents, what would be your suggestion for parents to set up first, a good working relationship with the school second, to also advocate for their child in an assertive but not aggressive way, but an assertive way to be an advocate.
Speaker 2 41:36
That's a great point. So I think you know, we know that families that work well with their schools and have good relationships with the teacher, everybody's happy, both psychologically and the kids do better. And if there's a kind of wraparound, so everyone's working on the same things in the same way. But other times, that doesn't happen. So I think it's really important that parents write into the IEP, a homeschool coordination component, which might be a daily log, or a weekly log, I have a lot of my parents have monthly team meetings, because sometimes something will come up. And during these monthly team meetings, we get everybody together. And just for an hour, it can be lunchtime, or after school and just really talk about what the child's done well with and how we can move forward and kind of revisiting some of the goals. And do we need new goals. I also think it's helpful. Sometimes parents give teachers cheat sheets, and especially paraprofessionals just has a few of the goals written down. And sometimes on these cheat sheets, they're not going to be a long explanation, just a little reminders. And also things that work with their child. Like he likes a lot of positive, you know, praise and things like that things that might work well with their child, or he did this well this morning, try this. And then another area that we talked about in the book that I think is far underused, and now that we're looking at one in every 36 children getting a diagnosis of autism, I think it's going to have to be more used. And it's well researched in the literature is peer mediation. The peers if they're worked with are absolutely wonderful support systems. And they can be great at prompting things. And I've had kids all the way from preschool where they'll come and say, What are you doing? And I said, Well, he's learning his first words you want to help? And they'll say, yes, they liked the adult attention too. And they'll come over and we can help them take turns and to and even prompt new words and things like that. And this works out well, all the way through up through college where we have peer mentors, and maybe have them join clubs and go with a peer. So there's a lot of literature on peer mediation. And it's not just saying go have lunch with Susie or Johnny or whatever. What it is, is really working with the peers to be supportive and being understanding and assisting with whatever would be helpful for the individual goals or whatever they might need. That it can be really helpful. And it's great for the person, that's the peer mentor, they report that they have more confidence, they enjoy it, they it really makes a difference. It's a win win for everybody. So I think that's something that is really critical and very often underused because at lunchtime too often I see the kids that I work with, with autism at the top of the monkey bars not playing with anybody or walking the perimeter of the playground. And you know if it were any other subject like child that didn't have autism, and they weren't doing well in reading or math, they would be on at all right away. But when it's social, a lot of times people tend to kind of overlook it. And maybe not even for just children with autism but for all kids and that social piece is so important people that kids that understand. Other children do less bullying. We had an adolescent in high school, and he said that People were being really mean to him in English class. So we went to the English class, and we talked to the kids. And we told them that he gave us permission. And his mother did, we could talk to the class. And we told him, the class that he had autism and that some things were challenging. And a couple of the students came up to us afterwards and say, we felt that said, we feel horrible. We've been being really mean to him, because we didn't realize he had autism. We just thought, I mean, didn't think I shouldn't say,
Dawn Davenport 45:29
probably did, or we just thought he was intentionally acting weird to get attention or whatever. Yeah,
Speaker 2 45:34
yeah. So um, but once they understood it, and could support them, it was he went the next day. And he said, I can't believe that everyone's being nice to me. So sometimes, you know, people going in there, and really working with the kids. I think this this is really important. And I mean, I think nowadays, most kids have a neurodiverse person or first of all autism, in their family with it being so prevalent, or have a close friend, but it doesn't hurt to really educate and really let people know, you know, what it's like, and, and I think, kids understand when you say, you know, how would you feel if no one, you know, included you in some activities, and they're really good about, you know, if we if we educate them the right way. So I do think this peer mediation is really helpful and critical.
Dawn Davenport 46:20
So most of these kids are many of these kids will have an IEP, what are some specific things that parents should request to be in the IEP? You mentioned, the school home communication, perhaps a daily, you also mentioned, like monthly meetings, can you ask for that to be put in the IEP? What are and if so, then what are some other things that you've seen are helpful to both help the child obviously, but also help that the school and the parents be on the same team?
Speaker 2 46:51
I think that it's also important to put in the IEP that the children's interests should be considered and used in the curriculum, and meaningful tasks be used, because sometimes we'll have a teacher that says, Oh, the child just isn't doing well. And we look at the task. And we think, whoo, you know, that's probably not fun. It's a worksheet with, you know, 100 word problems on it, or something. Whereas if you, if the kids into cars, and you said the same word problem with a car, they might get it like that. It's kind of like the example where you, if you take a cookie, and say, Would you like a half or an eighth, little kids will always say, an eight, because eight, they know eight is bigger. And then when you start chopping up that cookie into eight pieces that really quickly pick up on the idea that an eighth is a lot less than, yeah, so any things that are practical and around their interests, it this helps for all children, but really making meaningful tasks, I think that it's really easy sometimes for teachers to get in the habit of just having the kids sit quietly and working on worksheets, instead of really having activities that are hands on and fun for the kids that will make a big difference. So really, just putting that in their IEP is to make sure that motivational components like child choice, natural reinforcers, task variation, maybe interspersing, easy and hard tasks, all those things are included in the curriculum, even if they're included in the regular ed, they can still individualize it.
Dawn Davenport 48:22
Something that ties in with the title of hidden brilliance, I have found in IEP meetings that I have been involved with, is that I always want to start with, how is he improved? What are her strengths, things that force the adults to recognize is strength.
Speaker 2 48:41
I love that I think that's really critical. And I think we also need to do it on the goals. So I think when we get to the point where we say, okay, the goal is to, let's say it's a language goal, the goal is to play a favorite activity with a peer, because they're not they're isolating themselves, then what can we bring to the table to say, what have you seen any little thing that might help get us there? Like, have you seen a particular child they like to play with? Or do they, you know, prefer a particular school activity? Or do they? What did they like to do? Or who, you know, who do they respond best with teaching them this, and so on and so forth. So really say what their strengths are and how we can go from there, rather than Oh, he never does X, Y, and Z and really say, Well, wait, let's talk about that a little more.
Dawn Davenport 49:33
Yeah, that makes really good sense. Let me pause right here to tell you about free courses 12 free courses that you can use to help you be a better parent. Thanks to our partner, the jockey being Family Foundation, you can access these 12 courses by going to Bitly slash jPf support bi T dot L y slash JBf support so What is the prognosis for children? And again, this is almost impossible to answer I realize because it is a spectrum disorder. So I'm not sure how I'm going to ask the question. I'm not sure how best you can answer it. But what is the prognosis with kids and, and what factors influence children who can reach their potential versus children who don't?
Speaker 2 50:21
Well, it is difficult to say prognosis because children do progress at different rates. But I will say that when I first started in the field, only about 50% of the kids became verbal, using the techniques that we had back then, now that we have the motivational techniques, like we've described in the pivotal response treatment, if we start before the age of five, about 85, to 90%, become verbal. And we have some techniques for the tricky kid. So we're doing a lot better than we were, some of them won't become conversational, but they'll become verbal, some of them will become conversational. But after five, it's a little it's, the statistics go way down, it's only about 20% of the children will be if they're if they have zero words by five, will become verbal. So that's why I always really emphasize the importance of working on that verbal communication at a young age and really starting that young because after five, it's much more difficult, and it's more likely the child won't learn it. And it's such an advantage to have verbal communication. I mean, it's easier for everybody. Absolutely, yeah. And then I think our statistics, we need to work on getting them better, as far as long term outcomes. But we have found that teaching initiations is very helpful. If the kids have initiations, they seem to have better long term outcomes. So what do you mean by initiations? Like the question asking and initiate these social interactions. Some of our research we looked at the kids when they were in preschool that initiated like brought toys to their parents and things like that had better long term outcomes than the ones that just played by themselves without interacting. However, same effect with the verbal initiation. So we can, we can look at some of the target behaviors, like learning more verbs, would that help the child more learning initiation. So that's important to kind of look at what we're teaching the kids because sometimes people get into teaching things that really aren't that meaningful in life. And then we also know that the more that we can include children, the better so socially, especially if they're included with children, that they are good role models, and have good language and peers that can really interact with them. That's really helpful too. So whenever possible, including them in as many activities with children that don't have autism is really helpful, too.
Dawn Davenport 52:50
And this may be this May this last question may be outside of your area of expertise. But that being in the field, you probably know, some of what the research is showing? Do we know much about the causes of autism? And you talked about the CDC now saying one in 36, which is, I believe, a substantial increase? And that has to be associated with diagnosis, I would assume. But what's the current thinking as to what causes autism? Is there a genetic component? Is there something environmental that's happening during pregnancy, that we think could influence? So what do we know?
Speaker 2 53:29
Well, we we don't know who we there's no known cause or cure at this point across the board. There have been a lot of studies showing that possibly there's a genetic component, especially because it's more frequent in boys, identical twins that mostly both have it, it's a little bit higher in the same family, if they have a relative or something that hadn't, although I think all of us have, you know, somebody that might be a little on the spectrum. So it's not, you know, perfect, but I think that there is a suggestion that it might be genetic, but people are really saying there's multiple causes. Some people say, you know, it's a little higher now that mothers are waiting longer, like other you know, disabilities
Dawn Davenport 54:11
wondered. Well, we there's been some research indicates older fathers exactly that too. Yeah. Yeah. And older males, which would indicate a chromosomal on both cases, I would assume there'll be a chromosomal component. Interesting.
Speaker 2 54:25
Yeah. And I've seen studies that have suggested that, you know, some things environmental, you know, but really there at this point, we don't know, with it, most people are saying there's lots of causes,
Dawn Davenport 54:37
because it's is it one, is it one thing or is it a component of things which cause this do we know that?
Speaker 2 54:46
We don't know that and that's a very possible thing that it could be, you know, something
Dawn Davenport 54:50
mini mini neuro different or something. Well, yeah, or mini neuro developmental issues that are all being lumped under autism.
Speaker 2 54:58
Yeah, exactly. And And like you mentioned earlier, there's it really is such a broad range that a lot of people have even questioned is is it like more than one thing? So right, that's sort of somebody that Exactly,
Dawn Davenport 55:11
yeah. I don't know that that changes anything for the people who are on the autism spectrum. But it would be interesting, I think, to I think we all would like to know, and is it really increasing? Or are we just diagnosing it more better?
Speaker 2 55:27
Yeah. And probably, it seems like it might be a little reach. Oh, interesting.
Dawn Davenport 55:30
That is interesting. Well, thank you so much, Dr. Lynn Cagle for being with us today to talk about helping autistic kids shine. She is the author of hidden brilliance unlocking the intelligence of artists. We appreciate you.
Unknown Speaker 55:47
Thank you so much for having me. I really enjoyed it.
Transcribed by https://otter.ai