This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.
Lauren Roth (moderator):
Hello again. I'm spending a lot of time with you people today. It’s great. I want to introduce our next speaker who some of you may know from the last panel. This is Kate Woodcock and she's a behavioral psychologist on the faculty at the University of Birmingham in the UK and her research is focused on Prader-Willi for many years. She's really a leader in the field. You have a new way of thinking about behavior and Prader-Willi Syndrome. She's done research on helping people with PWS cope with change and rigid thinking and flexibility and manage their tendencies towards these issues. Her talk today will focus on research towards decreasing problematic resistance to change and people with Prader-Willi Syndrome. Kate (Dr. Woodcock) will talk for about 40 to 45 minutes and then we'll have some time for questions at the end. Please join me in welcoming Kate — Dr. Woodcock.
Thanks Lauren and it's a pleasure to be here. I'm really excited so I wanted to start off by talking a little bit about temper outbursts because when we think about difficulties with change temper outbursts become very important. I call them temper outbursts but that's just what we call them in the research, literature; other people call them meltdowns, blips, whatever word you use. I don't mean to pass a value judgment or anything like that so I'm just going to play you a video of a girl who is an actress who worked with us, acting out some of the behaviors that parents told us are the most common behaviors that happen during temper outbursts.
The sound doesn't seem to be working.
[video plays of actress acting out a temper outburst-no sound]
Obviously, we have all observed temper outbursts. We know that they're really difficult when they do happen. They involve lots of emotional behaviors; shouting, screaming, going red in the face. They're really difficult for individuals with PWS and for everyone else around them to deal with. This is some work from a study that I was involved with collaborators in Australia where we asked families to talk about the triggers of temper outbursts. You'll see that one of the most important triggers of temper outbursts; that more than nine in every ten people told us about is these changes to routines, plans, or expectations.
Ultimately, that is this resistance to change that we're talking about. What is resistance to change? I want to give you a couple of examples. One example would be: If the child normally goes to school on a school on a school bus with Bob the bus driver but on one day Bob the bus driver is ill and Bill the bus driver turns up instead. That’s the time when a temper outburst can be really likely. Often then the child wouldn't even manage to get onto the school bus and can't get to school on that day on the bus. Another example might be: What if Lucy is used to on the way home from Grandma's house—grandma usually gives her a packet of sugar-free sweets—but on one day grandma forgot to buy the sugar free sweets so instead she gives her an apple. That is another time when a temper outburst is really likely. If we think about those two examples, then there's something important going on with the second example. Obviously, something has changed in in Lucy's expectations. If she was expecting to have a sugar-free sweet and now she's not, obviously we can expect that she probably prefers the sweet to the apple. When we're thinking about doing research to try to support this rigidity and develop strategies to help individuals, it's really important for us to know what role are the changes-just themselves playing in the behavior and what role are other things playing? For example, the preference or the desire to have sweets.
It's really important for us to understand what the role of the changes in themselves are. What I was going to do is show you a couple of videos that help (I don't know if they're going to play). I'll just tell you about them. What we need to do is try to separate out the role of changes on them by themselves. Thinking about, if can we control the environment in such a way that we can watch what happens (if we only make changes) and the way that we've done that before (with careful observations) of game-like scenarios and in everyday life. I'm going to try and play you a game type scenario (I'm just going to explain to you what was in the videos).
I was going to show you some examples of how we demonstrated that the changes by themselves are important in terms of temper outbursts. What we did was set up game type scenarios where we could play a game as a child was expecting and then make a change in that game. If you think about something like Snap (we might be playing Snap) and then suddenly say, “Oh no don't say Snap anymore you need to say Bingo. That is a change and we'd look at the child's behavior when we're playing the game as they're expecting and then we'd look at the child's behavior when we're playing the game with the changes We observed that subtle signs of anxiety increases stress and some of the low-level behaviors that we see in temper outbursts happen when we make those changes (even in a game typesetting).
Then, if we take that to everyday life (if we observe people's changes, people's routines in everyday life) we can see that, if for example, we watch a routine as someone is expecting everything happens you know there's no temper outbursts. If a change in our expectation happens, then we can see a temper outburst but if we can also carefully control for the change. For example, (if the video showed) a girl who I worked with who was expecting to play a certain amount of games and activity and do activities with me for a certain amount of time. I said before that she'd finished the games that she's expecting with to play with me. I said, “No, I need to go now. I'm really sorry. I need to go”. That precipitated really difficult behavior. Then on another occasion, she was again expecting to play a certain amount of games with me. After she'd finished playing the amount of games that she was expecting to play with me I said, “I'm really sorry, but can you just play another five minutes? The computer's broken or something so I need to get another five minutes from you”. It triggered exactly the same difficult behavior and systematic observation.
We can show that changes on their own are really important for the more difficult behaviors like temper outbursts. That shows you it might seem a bit slow doing research in that kind of way because we need to do all those observations. We need all these other families to participate. It was really important in telling us that it's not all the other things that are going on; it’s not the preferences. The changes on their own are really important. The first thing that we did was think, are there some simple behavior strategies that we could use to deal with the fact that we know changes by themselves are important for triggering difficult behaviors? One of the simple strategies that we use is based on tried and tested behavior principles where we know that if we can use a distinctive signal that something is going to happen. Then, that signal can come to predict something that happens in future. We developed a brightly colored card that we called a change card and families use that with a particular verbal phrase saying something is going to change. They have this colored card and a verbal phrase; thinks something is going to change and what we ask families to do is to teach the child how to use this card.
I’m going to do a demonstration on how this signaling card strategy works because it helps to bring to life what I was just saying. I said that if we have a distinctive signal that something is going to change then that can help us to teach children to better predict the changes. I'm going to play you some loud noise so hopefully you can see what I mean by this.
That’s exactly how our signaling card strategy works. We have a signal that something is going to happen. In this case, the noise signal and that signals, “Okay that's going to be like a loud nasty noise”. Ideally, you should have noticed that the first sound you heard was more nasty than the second and the third sound. That’s because the second or the third sound you know that the signal is going to tell you that that you're going to hear the loud nasty noise. It makes it a little bit more expected and a little bit easier to deal with and that's what our signaling card strategy did. We tested that in a small study with individuals with Prader-Willi Syndrome and we showed that it seems to be quite good in terms of specific routines that have been changed for individuals. If we signal those routine changes, then it's easier for the child to deal with them. That then gave us the evidence to build this into a much larger project where we worked with individuals with Prader-Willi Syndrome and some other with neurodevelopmental disorders individuals.
We were comparing, what is this change signaling strategy compared to another strategy where families are asked to plan as much as they can to avoid changes (but bearing in mind that's not always possible)? We wanted families to also plan different eventualities into their plan so if we take going to school on the school bus example- if you know that going to school on a school bus can be difficult if the bus driver is ill, then you'd build into the plan more than one possible option. You would have Bill the bus driver in the plan. If Bill the bus driver is ill then you would also have Bob the bus driver in the plan. We're comparing these two strategies and we built some web-based resources to teach parents and caregivers how to use those two strategies. We compared them in a randomized control trial and that was with individuals with Prader-Willi Syndrome and some of the newer developmental disorders. We started off with a long period of behavior recording over six months and that was where families were using a diary to record behavior. Then we gave families access to one of these two strategies that I've just taught you about and the training around those two strategies and then we had another long period of behavior recording again over another six months.
In terms of the group comparison we found that both strategies seemed to be a little bit helpful. After after using the two strategies that we saw as a group there seemed to be some improvements in behavior, but they were quite subtle and there was quite a lot of individual variability. I've put some of the different experiences of families on that slide. You'll see that for example, one of the families who used the change signature strategy did find it really helpful and carried on using afterwards. Two people who used the planning a head strategy had quite different experiences and both of these strategies were based on tried and tested behavior principles. I think some of the most important lessons that we learned from this study are not about the comparison of the two structures to talk about other things that were going on. I've just pulled out three really important things that were going on here.
One really important thing that families told us was, “You asked us to record behavior over six months and we did that with her but with a diary. Just thinking about the behavior helped us to better manage our own child's behavior. It’s not that we were using the strategies that you gave us because you haven't given us a strategy yet; but keeping the diary and thinking about: what are the important things going on for my child? It actually helped me to think about better managing it”. One of the things we did going forward was to develop a much simpler behavior diary that allows parents and caregivers to read all of their entries online and help with that tracking process.
Another really important thing that we found was that these strategies are obviously based on trying to behave with principals. A lot of families told us, “We've worked it out for ourselves by the time children some of our children were in that study were 13-14”. By the time children got to that age, parents said “We’ve already done it all before. We needed to know this years before. We needed to know this from an early age”. That really pushed us towards thinking about early intervention. After we've thought about these simple behavior strategies, can we think more about what is underlying the difficulties with change that could help us to get a handle on other potential helping strategies? That's what we wanted to think about the brain processes or cognitive processes that might be important and when we think about the brain process of cognitive processes this thing called task switching seems to be really important.
Task switching is just thinking flexibly; it’s changing from thinking about something in one way to thinking about that same thing in a different way. The reason the picture of the eggs are up there is if you've got a boiled egg and you want to eat that with a spoon, you need to start off thinking about that spoon as a heavy hammer type implement that you can break the eggshell open with. If you want to stop and eat the boiled egg with the spoon, then you have to switch how you think about that spoon and think about it as a concave implement that's capable of scooping the yolk out of the egg. I want to just give you a quick demonstration of what this actual task switching feels like when you're doing it. What you need to do is answer the question at the top of the slide by calling out one of the numbers at the bottom of the slide. In this case- is the top person young or old? You’ll call out the number one because that person is young…So can you try doing that now just callout as loud as you can.
[Slide shown, audience participates]
If you could have seen the question, then you would have had to change how you were thinking. You would have had to go from young or old to is the person male or female? That’s what task switching is so it is difficult for all of us. Some of our early work showed that people with Prader-Willi Syndrome have a real difficulty with task switching and this is stuff from a brain imaging study that we did to show that there's a neural underpinning for that difficulty with task switching. There’s something different about how the brain is functioning, that's underpinning that difficulty so importantly. We also showed that the more difficulty someone has with task switching the more resistance to change we have.
In careful experiments, like the ones I try to describe to you without the help of videos at the beginning, we showed that if we put demands on task switching then we see more resistance to change more temper outbursts behavior. There's this link between difficulty with task switching and resistance to change. In our tester project, what we're trying to do is develop a way to train task switching using a game to then hopefully reduce resistance or change. It turns out that certain commercial video games are already quite good at improving task switching skills in gamers in the general population. I want to show you a clip of one of these commercial games.
[Video is unable to play]
These commercial games share some important characteristics. They're really exciting, really motivating, and really adaptive. Those three characteristics are important because we know from other research that those three characteristics help our learning to transfer from one situation to another. If I gave a person with Prader-Willi Syndrome a task (like the one I did the demonstration with you) on task switching, they would most likely with practice, improve quite a lot on that task. It is unlikely that that those improvements in that task would transfer to anything in task switching in everyday life. What the work on videogames have shown us is that with certain kinds of games, we can get this transfer to everyday life. With the early part of our study we worked collaboratively with a group of children with Prader-Willi Syndrome and we found out “what other things excite you and motivate you?”. Afterwards, we'd found that we developed our own game based on children's preferences to make as exciting and motivating for them as possible.
This is a picture of what our first prototype game looked like. We built it to put the key gameplay dynamic in line with children's preferences, so children liked controlling characters to collect things. Obviously, that fits in with what we know about some individual's preference for collecting things so in our first prototype of our game, players had to move a character around the screen and collect things on the screen.
You can see that at different times the player has to collect things of a different type. That’s what puts the core demand on the task switching. What the player needs to do is to go around collecting the good thing. In this case, they're the blue things (that you just saw) they were supposed to collect but they have to avoid the bad things and then at different times we can change what's good and change what's bad with this really rudimentary prototype. We tested it in a really small study to see “is that capable of improving cognitive skill in task switching?”. We showed that with a small placebo controlled trial (where we had one game that was built to put demands on switching and a different game that was built not to put demands on switching (a similar gam) that was built where we took the switching demands away) we showed that it does seem that we can get improvement in the cognitive tasks of task switching.
With that kind of small trial we don't know what those improvements actually mean. Is that level of improvement in task switching relevant for everyday life? We don't know. In our ongoing work we had to massively develop the game because in our prototype version we've been able to encourage people to play for a couple of hours or one hour for those two people that completed the small trial. What we were aiming for was hours and hours because in other cognitive training research it's been shown that if you can promote (for example twenty to thirty minutes of play on most days over about five weeks) then you can get improvement in certain cognitive functions that are deficient in people with other neurodevelopmental disorders. That's what we were aiming with for several hours of play over several weeks.
I think you can see some other things going on so one of the important things that we did to motivate children was to give them more control over their own gameplay. We know that control is really important for people with Prader-Willi Syndrome. We gave them a choice over which character they played with and which character was telling them whether they'd completed a level correctly or not. (Like this one) You can see that we built in a lot more progression into the game. There were several things that motivated players to play.
I want to just point out the several things that we've built into motivate players to play. You saw there when one of the levels was completed an item appeared and atoms (one of our currencies in the game) and players when they earned atoms, they got higher up a ladder towards a prize that players won. That prize was something that agreed with players outside of the game, so players knew the prize that they're working for and that was one of the motivating systems. Also, each of the levels completed, players won a star and they could use those stars to buy extra skills in the game so that was another thing motivating players to play. These different types of creatures (that you can see); there's one family there of creatures and you saw a different family of creatures earlier. Those are all different things that could be collected at different times and when special creatures were collected then then players could put those special creatures into their gallery. We had several different ways of motivating players to play. We also built in a number of different ways to improve the game; the way that the game actually trains task-switching.
You saw in the last bit of video that I showed that a cloud had appeared over the top of some of the creatures. That's because one of the important skills that supports task-switching is your ability to hold things in memory and change what you're holding in memory. When that cloud appeared, that helps to train one of the skills that we know supports task switching. We made the game really flexible so that it wasn't just capable of improving the task switching on its own, but it was also capable of improving these supporting skills (flexibility) in a way that matched the individual player’s needs. I can't talk to you about the actual results because they’ve just come in and we haven't finished analyzing them yet, but I just wanted to talk to you about what we've managed to achieve in terms of motivating players to play.
These are our players who played the game in our trial. It was a placebo-controlled trial, but these are the players that played the real active version of the game. You can see that the red line is the target that we're hoping for based on those previous cognitive training studies (in terms of playing about 20 to 30 minutes a day most days over five weeks). Most of our players did achieve that target level of gameplay and you can see that some players achieve massively more than that. I wanted to tell you about some reports from some of these families.
I think this family is probably the most positive story that I've spoken to so far. This is a young woman with Prader-Willi Syndrome and she played quite a lot of hours. She really enjoyed playing and she played a lot while she's at school. When she got home for the summer holiday she didn't play so much. At a time when she got home from after the summer holidays, both her mom and dad noticed sometimes when there was stuff that changed, they were both holding their breath (because they were expecting a behavior reaction) and they found that their daughter was able to cope with the changes quite a bit better than what they were expecting. They didn't get the same sort of behavior reaction that they were expecting. That is just reports; it's not part of the placebo-controlled trial, so I can't say if this is a real result of the game though (that's certainly what that particular family felt). Other families felt that there were some other potential benefits but perhaps not so much directly on the resistance of change.
I think it was this family here that said the practice of dealing with some of the frustration in the game helped their daughter to realize that I can do things that are really difficult. Starting off, the game was really easy and then because it's adaptive and it pushes her to do things that are more challenging, she got to a stage where she thought, “no it's too difficult. It's too fast I'm not going to be able to do it”. Her dad said, “I'll just come back the next day and try it again. She found on the next day when she come back to it she can do it”. They felt that it was really helpful in teaching their daughter that she can achieve things. In terms of when things change, understanding that, Yes, perhaps it's going to be difficult, but I can I can deal with this in the end”. I'm excited to see where the results of that are going but we'll see.
I've only got five minutes and I want to quickly talk to you about the early intervention study. This is based – we know that these task switching difficulties are linked to resistance to change; there's some really important work in developing youngsters to show that if children around preschool years (rounds of five or six)- if they're exposed to more flexibility in their routines or in their activities then those children develop task switching skills better, more efficiently. We've done some stuff with Prader-Willi syndrome to show that children who are exposed to more flexibility around the early primary school age, later on that seems to be associated with better ability to deal with change (just an association). What we hypothesize is if we could strike this right balance between having structure that we know is important but enough flexibility that might train the task switching in people's everyday lives.
What we've done, and this is work with Siobhan (who I'm going to makes stand up in a minute); we’ve got several families, several of whom have Prader-Willi Syndrome involved in collaborating with us to build this early intervention approach to strike this right balance between structure and flexibility. We've talked with those families to set out what we've called criteria, for what this approach should look like. If we're trying to develop an approach where we want structure, but we also want flexibility what should it look like (two really key things I think speak to the session)? parents told us, “If we're going to deliberately have flexibility, trying to make our child be more flexible, then it really should done in a way where the responsibility is removed from me so it's not on my shoulders (my child doesn't think that it's me making this choice).
That's the key thing that we wanted to build this approach on. What we've got in mind will seem like a game to the child (although it's not actually a game) but the point is that because it seems like game to the child, it means that the parent has the tool to impose that flexibility in an exciting way that's going to be certain for the child. I don't have time to go through in a huge detail, but I would really appreciate it if over the course of the weekend you would come up and talk to me or Siobhan (who I'm going to make stand right now). Siobhan is working with me on this project and because of all the technical folks I haven't had as much time to go into this as I wanted to, but we'd really appreciate the opportunity to talk to you about our plans. At this stage it's still in design phase and we really want to get input on what is going to work most effectively for you guys. What do we need to do and how do we need to go forward? To pull out the core point is taking responsibility away from the parent or carer. That means that at certain times during the day the child will have a plan and they can use that plan as much as is appropriate (given their personal characteristics on their age) but then at certain times in the day there's going to be a point where, “Okay, this is the point where you're going to put in flexibility and at that point it's when the game is going to choose for the child what that flexibility is going to be”. The parent will have been able to program that beforehand but from the child's perspective it's the game that's choosing. Hopefully I can show you a prototype of what that might look like.
The red one might be the typical routine and each of the options could be a different routine, but only a slight change. You saw there were five (this is just a prototype and we'd have to build it so that it's very flexible) and there could be different numbers of options to meet into each individual child's needs. Of course. we've only got things written here whereas some children would need to have visuals. That’s the idea, that at times when you plan to be able to include some flexibility, you could do that in a way where the system is helping you to do that because it's recording what that flexibility would be (and you're keeping track). It’s also allowing you to remove that responsibility from your own shoulders and give the control to the child, so the child is in control (because they can watch the system select it and then they can get a reward in the game if it's appropriate if you know if they do it correctly). Hopefully if we're able to work with you guys in other families, where we could build that approach into something where we're able to increase flexibility at an early age and then test this what we think is an important hypothesis. If we have this increased flexibility can improve tasks switching and can that reduce resistance a change later?
I just want to say thank you to everyone who's been involved. Of course, we couldn't have done any of the work without the families who've helped us. I know some families who've been involved in some of our research are sitting in the audience (so huge responsibility) and Siobhan who's worked with me on the flexible scheduling project and all of the members of my research team. Please do come and find us and please contact us about any anything that I've talked about today.
Learn more about Cindy Szapacs' presentation on ABA and PWS: Dispelling Myths and Changing Behavior.