Reframing Behavior

Behavior is an important form of communication, but what if behavior puts the wellbeing of students with autism and others at risk? Dr. Lisa Kemmerer unpacks this tricky topic through research, compassion, and evidence-based strategies.

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Transcript

Transcript 

00:00:01 Johnandrew Slominski 

Welcome to this episode of the Autism Annex Podcast—our first episode of 2024. I'm your host, Johnandrew Slominski. We've been re-releasing a few of our favorite episodes recently, and in the meantime, we've been developing some new content that I'm excited to share with you. 

00:00:23 Johnandrew Slominski 

On today's episode, we tackle the tricky topic of challenging behavior with the help of my guest, Dr. Lisa Kemmerer.  Dr. Kemmerer has spent 30 years as a teacher and researcher in special education, and much of her work focuses on the nuances of challenging behavior.  Lisa, welcome to the podcast.  To get us started, what does your work in challenging behavior look like these days? 

00:00:54 Lisa Kemmerer 

I am a training specialist for STAR Autism Support. I'm also the director of challenging behavior supports, so I oversee our behavioral resources. I do trainings, webinars, workshops, I do in class consultation for students with autism related disabilities. 

00:01:17 Johnandrew Slominski 

Before we go much further, it might be worth defining this term, challenging behavior, which can carry a lot of baggage. Could you give us a working definition and maybe some context? 

00:01:30 Lisa Kemmerer 

Sure. So when we think about defining challenging behavior, I think one of the first things I think is important for everybody to kind of consider or to think about is that how we define challenging behavior is really going to vary. It's going to be different depending on the group of people that are defining it. It's going to depend on what's challenging maybe for one person and one setting or for one group may not be challenging for another group or another setting. So we look at context, we look at a lot of different variables to help us define whether a behavior is challenging or not. 

00:02:11 Johnandrew Slominski 

So we're talking here not just about what a person does, right, but the context and environment where behaviors take place.  And I know you've got a great example that illustrates this from your own life. 

00:02:25 Lisa Kemmerer 

I love basketball. I love college basketball. I go to games a lot. Let's say I'm at that basketball game and I'm sitting and rooting for the Hawkeyes, my home team, and I'm in that crowd on the side when I'm screaming and yelling and I get pretty exaggerated. And I'm saying woohoo. Great job, clapping loud.  Under those contexts that those behaviors of screaming and clapping and maybe yelling out are going to probably seem OK and appropriate. However, let's say I went and sat, I'm in that same side with my Hawkeyes, and I start yelling and screaming and praising and saying good job when the other team makes abasket.  So in that context, under those conditions, that might be considered to be challenging for those people around. 

00:03:13 Johnandrew Slominski 

And to your point, we're not emphasizing the stopping of quote-un-quote “bad” behavior here, but really trying to first understand how a person's behavior fits into the bigger picture. 

00:03:28 Lisa Kemmerer 

We are oftentimes thinking that it's not that we need to get rid of it, and that's exactly what you said. It's not that that we want that behavior to be reduced to zero all the time. There are some times where it's going to be really appropriate and we're going to want to actually have that student engage in that behavior. But there are other times and there other contexts where it's maybe going to interfere with the student’s learning or interfere with the learning of others. 

00:03:55 Johnandrew Slominski 

Let's talk about some of the origins of behaviors, whether they're challenging or not.  In most cases, behaviors are learned, right? But I wonder if you could explain some of the tools and assessments you use because they can help us to understand not just the outward signs of learned behaviors, but also some of the underlying reasons and motivations. 

00:04:18 Lisa Kemmerer 

So when we are thinking about again why the behaviors occur and we get back to that challenging behavior, so we know that a lot of behaviors are learned. We know that some behaviors start out and they're learned based on the environment and what we know is that through assessment and through a lot of the research that we have now on how to assess challenging behaviors, that they often fall into a couple of categories as to why that's occurring. So, for example, many individuals, many children and adults, we do what's called a functional assessment and that is really sort of what we call the gold standard now for being able to understand what's behind that challenging behavior. Why is that behavior occurring? And we have great tools. Now we have this great tool called functional assessment or functional analysis that we didn't have years ago. And since about 1982, really we had this huge change in how we can treat challenging behaviors because we went from learning how to really individualize and know what was behind that behavior, as opposed to just treating sort of the behavior itself that that topography. So with those tools, what we know based on using these assessments, that again some of our students and some of the people that I work with have been—they use certain challenging behaviors to get out of activities that they don't want to do or things that they find maybe aversive or aren't their favorite thing to do. So examples for me in the classroom would be many, many times when we're asking students to come inside from recess right? And to do something that maybe is not as preferred as being outside that can result in a challenging behavior. So maybe they refuse to come in, they run the opposite way. They drop to the ground and maybe have a tantrum. 

00:06:13 Lisa Kemmerer 

If I bring a student over, I ask the student to come over and maybe do some work, work on their math, that can result sometimes in challenging behavior because it's difficult. It's hard and they want to avoid that. So some of the behaviors that we see that are challenging are the result of I really don't want to do that. It's not my favorite thing. And what do we learn? For what many children learn is that if they escalate certain behaviors, they engage in some of those challenging behaviors. Sometimes those tasks, those activities go away, sometimes they. Get removed from those for a little bit and it works for me and we call that really negative reinforcement, but all it is is that our students are or the individual is really engaging in a behavior to avoid certain things. 

00:07:01 Lisa Kemmerer 

We have another area, a camp, that we see a lot of in general and that's engaging in behaviors to gain things that we find pleasant, things that we really like to do or we want to be a part of so lots of examples that I see in classrooms are, you'll have a classroom of, you know, 10, 15, or more students, and I have worked with children who are engaging in challenging behaviors to get access to adults, attention to get more help with their work. Or maybe they want to gain access to more time on the computer or the iPad. So we see a lot of that in classrooms where challenging behaviors result in a little bit more time with that preferred activity. 

00:07:44 Johnandrew Slominski 

So when I advocate for my wants and needs, whether it's for something I want more of or I want less of or not at all, it can be enormously frustrating if I don't have the communication skills to express that want or that need to someone else. 

00:08:04 Lisa Kemmerer 

Exactly. And you're really bringing up a really important part of intervention that we know now is really successful for helping intervene and treat challenging behaviors. And that is the role of functional communication and being able to advocate for what are your wants and what are your needs in the environment? And so many of the children that I work with with autism, with other developmental disabilities or related disabilities, do have some deficits in the area of communication. They may have some developmental delays in their receptive and expressive communication. And if you think about it as sort of logically, if I don't have a good way to advocate for myself if I don't have a good way to tell you, hey, I'd rather not do that right now.  Or, um, I want more time with that. Right? You took it away too soon.  And I don't have a way to do that, but I get upset and that actually then results in me maybe getting some of those things we can kind of see how that might that might happen, right? How an individual might learn that. And so there is this really, really high sort of inverse relationship, I guess we could say, between building communication skills and building other academic skills and self-care skills, but especially in that area of expressive and receptive language.  We know that the more as we see students start gaining those skills, we oftentimes at the same time see challenging behaviors decrease. And that really that role of functional communication is really important there. 

00:09:46 Johnandrew Slominski 

That's a fascinating link between communication skills, especially expressive and receptive language and behavior. Lisa, you mentioned a term, functional communication training,  or FCT for short. Could you unpack that for us and explain how it's different from other ways of teaching communication skills? 

00:10:11 Lisa Kemmerer 

Sure. So, yeah, functional communication training is really in a nutshell, is teaching an individual a better way to communicate their wants and needs instead of engaging in challenging behaviors.  And functional communication training, what kind of sets this apart from more traditional language training, so maybe other types of programs that teach receptive and expressive language, is really that it's tied directly to challenging behaviors.  We always do what's called the functional assessment first. The first step is really to identify what that challenging behavior is. And then once we do that, we're able to then come up with a replacement behavior and that replacement behavior is that communicative response.  And it can be a verbal response. It can be teaching a child or an individual how to sign if they have some signs in their language and maybe they don't have the vocal. It can be teaching a child or an adult to use some type their iPad or some type of voice output device where they can use text or, you know, press and they get, you know, we record a message, it can be using picture exchange communication systems. So the mode really depends on sort of what the needs of the child are and we can do lots of different things that we teach them.  The key is really tying the function of the behavior to that communicative response, and what we want. Now, what we do with functional communication training is when we teach the child or the adults to do that, what's super important is that they get the same results that they were getting previously for that challenging behavior. 

00:11:57 Johnandrew Slominski 

I'm sure you have countless stories of children you've worked with over the years.  Could you share one that's been particularly memorable for you? 

00:12:07 Lisa Kemmerer 

Sure. So this particular child that I worked with she was just about 2 ½.  She was—had some developmental delays and she did have some language skills she could say hi and bye. She was able to point to things and reach, but she was engaging in a lot of self-injurious ehaviors by report from her family. She was biting her hand. She was slapping her head and we talked about, you know, when do we intervene? This was not just happening once or twice. This was sometimes happening multiple times and very intensely within maybe a 10- or 15-minute period. 

00:12:47 Lisa Kemmerer 

It was happening to the point where she had abrasions on her on her wrist, on her hand. They had become infected because she had bitten so much. She had bruises on the side of her face. She would often get really upset and bang her head and hit it against hard surfaces. 

00:13:06 Lisa Kemmerer 

So this was something that we felt really needed to be addressed because that was a safety issue. 

00:13:13 Johnandrew Slominski 

And when you were talking to the girl's family, what had they been noticing in terms of patterns in her self-injurious behaviors? And what happened next? 

00:13:24 Lisa Kemmerer 

So when her parents and her mother came in and also a grandparent was there as well, that was in the home with the family. They both expressed that this was happening at multiple different times throughout the day, so it was happening when it was time to wash hands, brush teeth, do some of those things. It was happening whenever Mom couldn't hold her. So she wanted to be held by Mom a lot, and if Mom would set her down, she would start engaging in some of these self-injurious behaviors. 

00:13:57 Lisa Kemmerer 

And it was also happening when they were asking her sometimes to help maybe pick up her toys. And when they were having to remove a toy at a point in time. So basically, there are a lot of reasons that we felt this behavior was occurring for. So we did an assessment and when we did, we set it up so that basically we were putting together situations in a very structured way using this functional analysis that where the parents have described in the caregiver that the behaviors are more likely to occur. So we asked them to have her try to brush her teeth and when they did that we looked and watched and see how what the behavior what happened with the behavior. 

00:14:41 Lisa Kemmerer 

And we also, as soon as she engaged in a challenging behavior, we had the parent basically stop that activity right then we would have the parent do it again. So we observed across these conditions that sort of mimicked some of the same experiences that they were telling us. We had the parents put the child down. And if the child got upset and then we had, we instructed the parent to go and and pick her up. OK, so we did this assessment, we identified and we saw patterns. And sure enough, what we saw is that under these conditions, when attention was removed, we saw escalations in some of those behaviors. And we observed them and it was happening very systematically when Mom was holding the child, behavior stopped when mom sat down with the. child, we saw these behaviors. So then what we did is we started teaching that communicative response and we started out teaching that with the parents. So we had the parent involved. We started to just focus on the attention piece of it and what we did is we worked with speech and language pathologists and we identified what to work on with the parent and we said, hey, art, this child didn’t have a lot of verbal skills. But she could sign please. And she could touch. Yep. Touch the card that had a picture of mom on it. She had great pointing skills. So we chose two things, two communicative responses that were really easy for her to do. She could do it quickly. She would do it easily. She had that in her response class. 

00:16:16 Lisa Kemmerer 

And we basically set up these situations where we'd have mom come over and play with her for a little bit, read a book, have her on her lap, maybe do cuddles, that kind of thing, and then we'd say, OK, mom, I want you to set your child down. She'd set Julie down. We put the card or either we prompt her to sign please. So we'd model that and we'd place the card in from her and right away. At the beginning, we just jumped in and helped her, so we didn't want her to get upset. We wanted to show her right away, touched this car to mom. And guess what? Mom's going to pick you up again right away. 

00:16:51 Lisa Kemmerer 

And we would do that so very quickly within for this particular child within a 20-minute session, the first time that we started that intervention, she started stopped engaging in that self-injurious behavior. We saw she wasn't doing it at all, and she was touching that card to get mom’s attention. OK, so that was just one of the things we worked at so very quickly, we were able to see intervention results with that particular child. 

00:17:25 Lisa Kemmerer 

We also then took that, and we took it to other parts of the day. So we worked on that when she was in the living room, just at multiple different settings across the child's day so that she was getting lots of exposure to when I touched this card, when I signed please, I get the same. I get Mom, right? I get that.  And that's just one, really small part of what we did. 

00:17:52 Johnandrew Slominski 

So with this child, who we're calling Julie (not her real name) she took some pretty incredible steps very quickly. But it's worth pointing out that that's only the first step in a much longer process. 

00:18:07 Lisa Kemmerer 

Yes. Yeah. I want to make it really clear that, you know, we saw very quickly this change happening, right. But it was, it was the first step and we did continue at times to see some challenging behaviors because, you know, luckily she was really—she was young. So she was 2 1/2 years old. She didn't have a really long history of engaging in those behaviors. Her parents said she started that in about two years of age, so it was really about five or six months that she had been engaging in that behavior. 

00:18:35 Lisa Kemmerer 

So one of the things that we know is the longer behavior has been occurring, the longer it's going to take to really reduce those behaviors to what we would, we would say are acceptable levels for a child, right? And in this case, we don't want it ever happening, right? That behavior was significant enough and causing enough damage that we didn't want that to be occurring at all. 

00:18:57 Lisa Kemmerer 

And we did see from time to time that there were some times where she engaged in those behaviors.  And so another really important part of functional communication training in addition to teaching and training communicative response that replaces that behavior is what to do when you do see that challenging behavior. And basically what we have to really work hard at with teams is making sure that whatever that challenging behavior that they were using in the past, we want to make sure that that no longer works for the child, right? So in other words, with Julie, if she went to bite her hand, mom was directed not to attend to that. Right. Not to say anything to her, to maybe gently sort of block just to make sure she's not hurting herself. But not to talk about the behaviors and definitely not to pick her up and to and that's hard for a parent, right, not to pick her up, not to hold her, not to try to alleviate her stress. Sometimes we need help, right? We need what we what we think is our natural response in these situations is often, unfortunately, the human thing to do, but it's not the most therapeutic thing to do, at least in the long run. 

00:20:15 Johnandrew Slominski 

In these scenarios that you're describing, Julie's mom is a huge part of the process. But there are undoubtedly going to be situations in real life where Mom just isn't available for any number of reasons. So I'm curious: how do you get to that stage where Julie can tolerate the absence of the things she's requesting? In this case, her mom's attention, without engaging again in that self-injurious behavior? 

00:20:45 Lisa Kemmerer 

I'm glad you asked that, because that is really the next step and with Julie. What we did is we taught her gradually how to delay that reinforcement or a delay to having her mom come over. And the key there is really that we have to do it gradually. So we did a couple of things. So #1, it's a lot easier to wait for something if you have something else to do, right? If you have a preferred activity, if you have something available. So we coached Mom to have some things set aside. When she needed to do other things, she needed to get dinner ready. She needed to make a phone call. 

Or whatnot or just. 

Need a little bit of time. 

For herself, we. 

Had her put some things away for Julie so that those things were available. They were fun things that we knew that she really liked. And that was sort of in essence sometimes compete with moms attention. So we put that in place. But we also then taught her, that is, we'd have mom walk away. We'd have Julie either sign please, or she would touch that communication card. And then we would say to her, OK, great job. But just we'd have Mom put up a finger and say just second and at first it was literally 1 second. Mom comes back over, so a very brief period of time. Then, slowly over time as she was doing better, we started increasing that delay, so we brought in a timer. We brought in a visual that indicated when Mom was available, when she wasn't. So when the picture, which I think with her we used a stop and a go sign, or we had a picture of mom that we turned over when that was available, and when she wasn't available, she had her other things and we had another card there. Our signal to her.  And so, with that combination of things over time, she was able to, by the time she left the clinic and then when we went in and did some training in the home with both mom and the grandparent, she was up to, I believe when she left 5 minutes and it doesn't sound very long, but it it's a long time when we're considering sort of the severity of her behavior.  And that we were able to increase that over time. So she also began to develop a lot more skills. So as she was you know in school as she was gaining more skills, she also was able to play better. She was able to entertain herself more. And so gradually, you know, she could wait a lot longer for mom. 

00:23:18 Lisa Kemmerer 

So that's always the the last step is, how do we make this really functional and how do we how do we teach kids that you know, yes, we can communicate appropriately, we can get the things that we want using this other mode instead of challenging behavior, but we don't we can't always get everything that we want at that moment. So yes. 

00:23:41 Johnandrew Slominski 

Julia's story is such a great example at 2 1/2 years old. And in thinking of older students in school, I know many listeners are familiar with or even use the STAR Program, and I wonder if you could talk about how functional communication training works with challenging behavior in those settings. 

00:24:03 Lisa Kemmerer 

I think what I'll talk about is a child that I work with in elementary school and he was, I'm thinking probably around, I'm thinking second or third grade. This was, he was at, this was actually a classroom that I was consulting in for STAR, nd this team was using the STAR Curriculum, their scope and sequence and using lessons from that. So they had the curriculum in place, they were doing all kinds of great things. They were using visuals, they had things, the environment set up for him.  Primarily what they were having difficulty was is any type of academic work that they were trying to get him to do.  Bringing him over to teach, maybe some skills in isolation, he was engaging in really severe forms of destructive behavior. He was throwing items and he was aggressively kicking, trying to pinch, and grabbing the teachers’ hair or the adults hair.  So there are a lot of aggressive behaviors occurring. 

00:25:09 Lisa Kemmerer 

And these behaviors again have been occurring for quite a long time. So one of the things that I do want to just kind of mention is that many times for many students, when we get the right curriculum in place, when they're being taught the skills that they need to learn, when they have the prerequisites, we're using evidence based practices right, we're using visuals. We're using reinforcement. They were doing all of these things for this child, but they were still having really high rates of behavior that were occurring and you get a lot of that has to do with how long that history has been occurring and this was a third grader who by report had a very long history of engaging in these severe behaviors.  And when you think about it, basically what the team was doing is, but they were hanging in there for as long as they could and then when the behaviors escalated, they would basically say, OK, we need to stop trying here and they would stop the work. And so what we saw over time was that basically he was getting out of those. He was avoiding. Tasks for those higher levels of behavior. So what we did is we incorporated into the curriculum that he was already using and into his work time, he already had a lot of he was not a verbal speaker, but he had was using an iPad, a device, and he was also able to use a break card. 

00:26:34 Lisa Kemmerer 

So we took that break card, we wanted something to be really easy. He was just going to, he would just hand that to the staff member. So we really went back a lot of a really kind of a long way. He was very capable of doing a lot of the work. That wasn't necessarily the issue. He just didn't want to do it. And he had again this long history of learning that if I get aggressive, those things go away. So what we did is we would and when we brought them over to the table, he would always transition over there. But then as soon as they sat down and asked him to do something, he would have his—he would get aggressive. So first time what we did is we put the card down, the break card, and we said to him, you know what? You don't, even if you don’t want to work, just hand this card over to your teacher. So he would hand the card and he would get to leave. OK. And so we did that for several days and he did not do any work at that time 

00:27:31 Lisa Kemmerer 

 And we basically reward that.  Then what we did is when he would come over, we had one thing ready to go and we would have the card there and we'd say and he touched the card and we said, you know what? Great, great job for asking. But you know what? Tell me, what's 1 + 1, OK?  Or whatever he was doing, we have him do a very small task and then we'd say, OK, great, now you can tell me when you're finished. So we picked something that we knew he could do, really easy, actually was that it was a task that we knew he would do quickly, that he already knew how to do and that he had already basically demonstrated that he would do OK. So, we didn't start out with the necessarily the work, we started out with something that basically he had to follow an instruction and then he could tell us he wanted to take a break.  Then slowly over time, we started introducing as he was being more successful, we basically broke down that challenging behavior. We broke that connection down between, you asked me to do something, I hit you, and then I'm done. And instead what we did is we said, hey, if you don't want to do that, just tell us, right?  Hand us this card and the same thing's going to happen. And then gradually, as he was being successful, we gradually were able to introduce those skills that they were using within that the STAR Curriculum and he was doing more and more of that and he was earning his rewards. And then he was telling us he was all done. 

00:29:01 Johnandrew Slominski 

Lisa, what advice would you share with parents and caregivers if someone they care about is struggling with challenging behavior? 

00:29:10 Lisa Kemmerer 

First of all, I always want families, parents, teachers to know there are supports out there, right? There are ways that we can—we have really good strategies now we know a lot about how to work with some of these challenging behaviors and and they can change.  So if you are a parent and you your child is engaging in some significant challenging behaviors, you know one of the first steps that it really depends on, you know that your school. Oftentimes these behaviors are occurring at school as well. And so your school team, your school is often going to have some resources.  Maybe, maybe it's not happening at school. 

00:29:49 Lisa Kemmerer 

But they also are going to have some probably good ideas for you that maybe some, there's some strategies that they're using at school that might help with their child at home. So again, maybe they've got some visuals that they're using that really help that student really know where to do what to do. So talk to your educators, talk to your child's teacher. 

00:30:10 Lisa Kemmerer 

The first step is really identify why? Why is that behavior occurring when is it occurring and once we can kind of answer that then we can really come up with interventions but start with probably your school or maybe start with if your child's younger and going to a preschool environment, they may have some help for you. They may be able to either help you with resources in the community, or they may able to give you some tips on things where some behaviors are maybe occurring at school or how they are dealing with the behavior and what they do, can we can work on these behaviors and we have a lot of really great tools that can help. And then finally, a lot of the work that I've done in the past has been training caregivers, training parents and parents can implement these strategies very effectively. They're very good at t it and I think it's really important that we are making sure that these interventions are being offered to families. 

00:31:09 Johnandrew Slominski 

You've been listening to my conversation with Dr. Lisa Kemmerer. 

00:31:15 Johnandrew Slominski 

Lisa, thanks for being a guest on today's podcast and for all your insights. 

00:31:20 Lisa Kemmerer 

Thanks a lot, I really appreciate it.  It was a pleasure. 

00:31:25 Johnandrew Slominski 

I'm Johnandrew Slominski, host of the Autism Annex, podcast developed by STAR Autism Support. 

00:31:34 Johnandrew Slominski 

Be sure to subscribe to stay up to date on new episodes. My upcoming guests this spring are experts in occupational therapy, sensory processing challenges and dentistry for children on the autism spectrum. I hope you'll join us. 

00:31:52 Johnandrew Slominski 

Until next time, take good care of yourself and one another.