Episode 8- The ABCs of Intervention

Speaker 1:                        Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters Dr. Lisa Interligi and Kristine Christopoulos, and their guests, on sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcast, Spotify, and Stitcher to name a few. You can learn more. Connect with the Loop Me In community and listen to more episodes on our website loop-me-in.com.au.

Dr. Lisa Interl…:              Hi, Pam. Great to have you on today and great to see that you’re in Noosa. So, you’re obviously a little bit shielded from our lockdown here in Melbourne.

Pam:                                 Yeah, a fortunate person I am I think.

Dr. Lisa Interl…:              Yes, indeed. Yes, indeed. And we’re really excited to have you on, because both Kris and I have had experience and our children have worked with you a long time ago actually, but it’s great to see each other and great to hear what you are doing, and hear some experience that you might be able to give to our listeners. So, maybe we’ll just start with asking you a bit about why you became a psychologist in the first place.

Pam:                                 Okay. It’s a long time ago. I was working teaching in a TAFE college with kids who mostly come out of special education, but I was doing postgraduate studies at the time. I was lucky enough to work with a man called Lawrie Bartak, who was, at that time, very influential in understanding autism. And then there was Bruce Tonge from Monash and a colleague of mine from Adelaide, Verity Bottroff. And Verity and I did our research with those two people supporting us.

And so I ended up in the field of autism, partly because quite a few of the people that I had in the program in the TAFE college had a background of autism. So, it all became very interesting and it just grew from there. And I then came out of TAFE and decided, “Well, I’ll go into practice and see what I can do.” And it started. And all these small children started arriving. Some of them were very little.

Kristine Christ…:             And how did you involved with ABA therapy, Pam? Did that come shortly after that?

Pam:                                 Yeah, it was a little while after that. And I was really fortunate because some of my clients were starting to work with people coming in from America. So, there was man called John McClurkin, who’d worked in a lab below us, and I was absolutely blown away when these programs started with the children I was seeing, because for the first time ever, we had something that we could offer families rather than just we’ll help any way we can.

But just watching these children sit with their therapists for their three hours of session, and so on, and watching what happened with those children, the ones that hadn’t been able to say anything, didn’t play, started to play, et cetera. And those outcomes are definitely not the same for everybody, but at least we had something. We had something that we could get our teeth into and that we could help with the children. And as we did that, sometimes then we got to help with the behaviors. In fact, more often than not, we got to help with behaviors. We kept saying the children, because they were not ours really, we ended up with these lovely children. And they had different abilities, but they were often lovely. Just great to be around.

Dr. Lisa Interl…:              And can you explain a bit about ABA just so that people understand what it entails?

Pam:                                 Yeah, it’s actually interesting now, because I notice whenever I’m writing up NDAs, information that… I’m not necessarily meant to say ABA anymore. I’m supposed to say intensive early intervention, but we started with ABA therapy. We understood it as ABA therapy. And I think it got adjusted in many ways to an Australian market, because it was a program coming out of America. And so the process was… It was intensive. So, usually, I used to say 10 or 12 hours a week was bare a minimum. Children working one on one with a therapist.

The therapist came from all works walks of life. There were people that had worked in banks and people that were studying, and people that had been teachers, and so on. So, they’re from all over the place. And if they were the right person, they really stuck with it. And they stuck with their family sometimes for years and years actually. And for the child, there was this structured program with a huge amount of fun and play and interaction in it, but it was just teaching really. So, there’s a little person that I see at the moment going through this process and just watching that child, who was not accepting any information really from the outside world, now can’t wait to sit down with a therapist, a tiny person, tiny child, and do these activities and interact with the therapist via the activities. At the moment, just loving them.

And you think, “Wow.” I don’t think it could happen unless you have that process of structured teaching, the amazing people that do the work, and the fact that the child just knows what’s coming. We had all sorts of buzzwords. We wanted 80% criteria and all sorts of things. But the main thing was that the children knew what to expect and they knew when they’d got it right, and they were happy to then do it again, or do it again the next day, and eventually use it in the rest of the world, whatever they were learning. So, it might be learning to make a request, or it might be learning just to finish a puzzle, anything.

There were so many activities that we tried and did, and made up as we went along. And people made things. Now we can go to various ABA versions of shops and buy all sorts of wonderful cards and things, but our first cards were pieces of cardboard with a picture of grapes cut out and stuck on it. So, we had no materials. Everything had to be made.

Dr. Lisa Interl…:              What’s really wonderful about ABA, because we did ABA for a while with Louis, was that there’s a sense of success, or being able to do something successfully. And so I think that positive reinforcement for the kids is really important in a world where often they’re not getting that positive reinforcement.

Pam:                                 Yeah. Yes. And being able to… We could see progress, because we were very detailed with our record keeping. We could say that this child now knows how to clap, how to copy clapping hands, whatever it was, where they hadn’t known how to copy clapping hands at the beginning. So, there were all sorts of things that we knew were crucial, but they needed to copy actions, and sounds, and words, and activities and sequences from another person. And once they could copy, then you opened a learning opportunity for them.

Kristine Christ…:             Yeah, what you mentioned before about structure, I think that’s crucial, isn’t it, to any type of therapy we do with these kids?

Pam:                                 Yeah. And we saw it again and again. I think that was the fortunate bit that we could… It wasn’t just one child where we could see this progress, or we could see that the structure helped them with behavior, or with interactions with others, but we saw it again and again and with very different children. And I think that was the crucial bit. We had children who had quite serious delays and other children who were already reading words at the age of three years. There was a huge range of potentials.

Dr. Lisa Interl…:              So, how does that flow now into dealing with behavioral issues? Because I guess that’s one of the most challenging things when you have a child with additional needs and particularly with autism. How do you actually, as a parent, try and deal with those issues as they emerge? In Louis’ lifetime, we had lots of different phases of that. But yeah, so just generally, what’s your advice?

Pam:                                 With behaviors, in the beginning… I suppose I’m still thinking under the umbrella of ABA, but of course, once we got past that, we were dealing with behaviors for all sorts of reasons. We might have been dealing with behaviors at school, or at home. Sometimes, those behaviors were relatively minor I suppose. It might have been something that was a bit antisocial, like spitting, or something like that, or it could be potentially quite harmful.

And so the difficult… In terms of the behavior, we looked at a teaching process always. So, that’s where the ABA process informed what to do about the challenging behaviors, because if we were going to create a difference to those behaviors, then we had to be able to assist the children with learning a new behavior, or an adjusted behavior. So, it wasn’t enough to try and get them to restrict the behavior that was causing a problem, but they had to learn something new.

And so then they needed practice. And so it came back to that process of how are we going to get this sort of practice? And quite often, it was the parents that were having to put in this. If there was no actual program in place at home, then it was the parents that were going to have to put this practice into place. And it would come back to the same systems. We’d look at what were the antecedents to the behavior, then of course, the behavior and the consequences, what was either reinforcing, or providing an opportunity for the child to continue with the behaviors.

And so a little bit of recording would go in about when did they occur? Who was the child with, or the person with? And what sort of cognitive abilities could they bring to the table about shifting those behaviors? I’m sorry. As I talk about this, I keep thinking of the amazing range of challenging behaviors that came across the table. But obviously we’d look for triggers and potentially record those. And then we would look for what was maintaining the behavior. And sometimes, as I know because I’ve got five children of my own, sometimes what was maintaining the behavior was the parent just giving up.

So, if the child was screaming for X, then sometimes X was provided because that was a lot easier than finding another way to get past that behavior. And I was talking to somebody yesterday, who’s a grown up person, who wanted something and decided to behave very badly to try and get it. And then the difficulty was does that person get this, or not get it because of the behavior now? But if the person didn’t get it, then it could be dangerous. Okay? Not necessarily in that situation, but there’s always that potential if the need is perceived to be great.

So, sometimes, you have to problem solve on the run and we can’t always not give in, but every time we do give in to some version of a tantrum, then the child’s going to use it again and probably escalate the next time. And that’s the difficult thing and that’s true of any child. So, one of the things was always, with children on the spectrum, that they needed to know the same limits as other children did. They couldn’t run amok just because they had a different background.

Kristine Christ…:             Yeah. And I think that happens sometimes, doesn’t it? My other two kids always say that Matthew gets away with anything.

Pam:                                 Yeah, I know, I know. Why wouldn’t you want to keep them comfortable and happy? So, then it was always that difficulty with how do we react to this? As you know, we’d have planned ignoring in ABA sessions. If the child did X, then we’d potentially turn our head away. And then after a certain amount of time had lapsed, we’d just turned back again and continue with maybe the same demand. So, there were all sorts of processes like planned ignoring, or trying to redirect the child. So, we know that if we can put this thing in front of the child, then they’ll forget about that thing, or they’ll move on.

There was always that notion of how do we get a child to follow instructions? And obviously in ABA, there was a huge process of compliance and cooperativeness, which meant that if I’ve said, “Put your hands on your head,” hopefully the hands will go on the head. I’m talking about the little kids when I say things like that. But it was just the following an instruction. And I used to sometimes say, “We’re not under voice control yet.” But another big issue with challenging behaviors was safety.

So, was the child safe, were the people around him safe, were things safe? And so a lot of planning went into that. And so for some children, all they needed was a withdrawal space. So, this is [inaudible 00:16:10]. If I’m in this mood and I withdraw to this space with these activities, then I’ll feel better and I can come out and continue. And so they could potentially learn a process of self-regulation and be able to say, or appearing to be able to say, “Uh-oh, I think you’re at a number four. What would be the best idea?” And the person could say, “I can withdraw and I can do these things. And then I’ll adjust.”

But that’s a bit like wishful thinking. It didn’t always work. And as you know, often in autism, the emotional regulation is one of the big issues. If I’m sad, how do I make myself feel better? If I’m angry, how do I calm down? It’s really hard for them, self soothing. So, now we’ve got lots of things like mindfulness. And for a long time, we’ve had the social stories, which would provide the adjusted behavior. So, if I’m asked to get out of the pool, I swim to the side of the pool and I get out. And when I get back to the center, I will get whatever was on my prize list, because I did such a good job of managing myself.

So, we would have the notion of where there was going to be a problem, what it would look like if the person managed themselves, and what the reinforcement was going to be. Those versions of self-regulation needed to be practiced daily and that was the hard thing. There was five in school or center setting. It was a bit hard to ask parents to try and have a practice daily of some process of adjusting a behavior. And we always had to be mindful that there’s so many things to do and there’s limited resources. And to go through, even if it’s only a five minute process of practicing something, can be really difficult for a family. So, sometimes we would be able to do that with a little video. Okay, put the video on and the child can practice it that way. There were various ways around it, but it was still hard.

Kristine Christ…:             And keeping it consistent in the school, or the day center that they’re at too, isn’t it?

Pam:                                 Yeah, that’s right. And you did a great job today. I thought we did that sort of social reinforcement that you can do so easily in a center. It’s actually more difficult to do that at home. You try and remember to do it, but it’s quite difficult. It’s just coming from the same person all the time, so it becomes less interesting.

Kristine Christ…:             Yeah.

Pam:                                 A lot of considerations about what was the function of the behavior, was the child trying to escape or avoid? Did they always have a meltdown when you put a math task in front of them? Did they always have a meltdown when you said no to some desire, object, or event? So, there was always a lot of ideas, especially coming from an ABA background, of what do we know about the behavior? Why is the person using that behavior? And what will be the teaching process that will help them use something different?

And I think I mentioned before when we were just having a chat, the other thing that used to worry me a lot was stimulation. So, I used to just sometimes think, especially in some settings, is this just a function of being under stimulated? What’s happening, whether it would be lashing out, or harming self, or loud screaming, or anything else, or absconding, is there something in this environment which is… Even though that many things are good, but it’s not meeting the person’s needs.

Kristine Christ…:             And I think we’re finding that at the moment, aren’t we, through COVID, the lack of stimulation?

Pam:                                 Yeah. And when you think about it for children, if they’ve had ABA, they’ve had all that version of stimulation and there was a lot of it, one way or another, and then there’s a school environment where they are actually learning. And I’m not too sure sometimes whether there’s enough. It’s probably just a private thought I shouldn’t be expressing, but whether there’s enough emphasis placed on learning once they’re adults. Because I don’t think… Most of us shouldn’t have a use by date when it comes to learning.

Dr. Lisa Interl…:              No, we agree with you, Pam. It’s one of the things that we talk most about I think now, Kris, isn’t it?

Kristine Christ…:             Yeah.

Dr. Lisa Interl…:              Amongst our group about whether our kids are getting that learning opportunities and that stimulation to keep them developing, because you’re right. Nobody has a used by date. And with neuroplasticity, you’d hope that everybody gets a chance to keep growing and developing their brains. And we want the same for our kids.

Pam:                                 Yeah. And if you think about that, then there’s always a potential that some of that could happen in a classroom style environment, or an outdoors zone. Doesn’t matter where it is. But so many things just with that notion of the skill development is here and if we add this little layer, what will that mean for the person?

Dr. Lisa Interl…:              What about hormones? Because that’s when I felt that there was a bit of a gear change in Louis’ life. It was I think when he hit teenage, late teenage years and there was definitely a behavioral impact.

Pam:                                 Yeah. Well, if you think about it, one of the things that I’ve always felt for nearly everybody is, biologically, there are certain things that completely apply even though the person has autism. So, I think that when they reach potentially early teen years, especially I’d see with the children more in mainstream settings, they would be very distressed by the lack of social opportunities. They didn’t necessarily know what to do about making social opportunities, but it was like a biological imperative. I don’t know how to be part of a group, but I want to be part of a group.

And then on top of that, of course, comes all those physical and hormonal changes, which is still true for everybody, without necessarily the outlets that other people have. And I still see a number of adult clients who are just waiting for the soul mate to walk through the door. They’re not interacting with anyone much, but they still think that person will magically appear and that will make their lives okay. So, it’s not only that the physical notion of the hormones, but it’s actually life opportunities. And so I think that those limits that are imposed, because if they’re in their school settings, they can’t necessarily express themselves as they would like to, like they might want to tell someone they’re looking good, or they might want to just have an opportunity to just be part of the group.

And it’s so hard for them. So, I think I noticed that just simply, at the hormonal level, some people really struggle with it. And you have a lot of behavioral outcomes as part of that transition from this stage to that stage, and then the next stage. In other people, it seems to pass fairly calmly and quietly. And I suppose it’s true of our other children too. With some of them, we talk about raging hormones with our 13 or 14 year olds, or something like that. And yet another person might somehow manage that differently. And so what are you going to do? Because they haven’t got the options that other people have. They won’t necessarily have a relationship. They won’t necessarily have an opportunity to be involved in a sexual relationship when they’re old enough and so on.

So, they’ve therefore got to be taught to manage it in different ways. And it’s still hard at a social level to have that management and very hard on families too I think. And I don’t know whether that process of denying that this is a big issue for them and therefore please go off to your room. There’s lots of information we can’t deal with this in the family space. We need you to move away. And which is reasonable, absolutely reasonable, but it also leaves them with not very many fallback situations. And that’s a really hard one. So, is it pressure of hormones and not being able to express that need the way they need to and as others might?

They might just be off playing football every night and they’re fine as long as they’ve exhausted themselves physically. So, there are a lot of things that vary enormously for the person with autism. And so then we say, “Oh, gosh, now what do we do, because we’ve got hormones as well?” And none of us really have a good answer. I wish I did. Besides all the things that we do to help them with management and that comes back to that process of teaching again. Here’s your management process and helping them with that, and rewarding them for following the process.

Dr. Lisa Interl…:              I think one of the hard things that I learned early on, and I think it was a process of doing the ABA stuff, is that you’re not conscious of the rules that you’re setting up as a parent, or a family, or in that context, and the consequences. They’re not obvious. So, I remember when Louis was initially going to school and he was very fussy about his eating. So, he’s eating Vegemite toast every morning.

And then it got to the weekends and I’d give him Vegemite toast, because that’s what he was eating at that point in time, and he’d stop eating breakfast. And I couldn’t for the life of me work out why he wouldn’t eat, but it was because he’d associated Vegemite toast with going to school. And he thought that was a way to stop going to school. So, it was a weekend so I won’t go to school, so I won’t eat my breakfast. So, I had to really rethink the whole idea of breakfast and what I was doing.

But completely unaware. It took me months to work it out. And so it is being like a forensic detective, trying to work out behavioral patterns and trying to understand the what’s the antecedent, as you call it, what’s the causation factor, and what’s the behavior, and how that’s being reinforced. So, for him, he thought, “Great, I didn’t go to school. So, I didn’t eat my Vegemite toast. So, that’s working for me. I’m never going to eat it again.”

Kristine Christ…:             Yeah.

Pam:                                 Which is amazing. And I’m glad you got there too, because I would’ve been sitting there scratching my head too, because Vegemite toast works for him, so why wouldn’t he eat it? It would’ve been a hard one.

Dr. Lisa Interl…:              Yeah. We had lots of those curiosities, but you’re not really aware of it until you have to sit and unpack it. And that’s a real skill where a therapist, or somebody, would be really helpful to help you do that.

Pam:                                 Yeah. And sometimes it is just a conversation, like you might be sitting there with a person who… Potentially a therapist who has a background in autism and says, “It somehow works out that the child’s made that link like Louis did. Okay, if this works on school mornings…” And sometimes, it’s just a conversation. There’s no magic involved. It’s only because you’re exploring the issue and going, “Well, I want breakfast to still go ahead on the weekends. What should I do?”

And sometimes, it’ll just be an experiment. It might be what’s the range of food? And as we know, sometimes that range of food is not very high, which was always… It was actually another behavioral issue with the children who literally only ate white food and so on. There weren’t a whole lot of them, but there were always enough to cause anxiety where you would try to gradually increase that range, minute amount by minute amount until they could be having something that was going to help build their brain.

So, behavioral challenges didn’t just come from the children who had tantrums, or who lashed out, or who hurt themselves. It certainly came from the children who just withdrew, or just refused. Their compliance was poor. And so normal things like get dressed, or clean your teeth, or something were just never going to happen if they could help it.

Kristine Christ…:             If they can… Yeah. And it’s triggers as well, isn’t it?

Pam:                                 Yeah, yeah, yeah. And are very hard on families, that notion of how do I get this child through these steps every day and still leave the house without us all being completely distraught three hours late, or something? So, there were plenty, but I’m glad you made that connection, Lisa, because that could have been really difficult for a while.

Dr. Lisa Interl…:              Yeah, it was. Oh, Pam, we have lots of funny stories. Like I think one of my other funny stories with that, I’ve got lots of them, is we persisted because we love going on holidays as a family. So, we persisted in going on a holiday and on a plane to far North Queensland and inevitably that flight, Louis would be screaming like he was going to die, like he was in an environment that was very close with other people.

We always had a baby behind us crying. He was triggered because of his experience in hospital. And it was just horrendous and we kept on doing it for years. And gradually, we desensitized him and he got a little bit better, and he’d watch his iPad and have his earphones on. Except if there was turbulence, he would yell out, “Oh, my God, we’re going to die. We’re going to die.” And people would turn around like he knew something that they didn’t know.

And eventually, they would laugh and we’d all be okay. Or when people stood up to get their luggage out of the overhead lockers when the plane had landed and you have to wait, and he’d be yelling out, “Oh, my God, come on, come on. Move!” And I guess verbalizing what everybody else was thinking, but out loud. So, luckily, people had a sense of humor around him, but we got there in the end, but it did take a lot of effort and it would be easy to give up.

Pam:                                 Yeah, yeah. And isn’t it amazing that you survived those, because people did give up. You know?

Kristine Christ…:             Yeah.

Pam:                                 And that was hard. There were always children who didn’t easily leave the house once they reached a certain age. It might be quite young, four or five. The whole family had been in the car and the family would be trying to move this child into the car. And it was a bit like attached to the door jamb, or something. They just weren’t going. And incredibly disruptive and same as you’re saying, Lisa, it was like you had to not give up. But it put everybody through a nightmare doing it. And there are so many things like that. The version of reinforcement was sitting in the car, waiting for them, and so on, or the favorite puzzle would be in the classroom to get them in the door.

It’s always that notion that you had to do a lot of reinforcement to get normal things done, because sometimes, we’d just talk about cooperativeness and we had this expectation that our kids would be relatively cooperative. There was an agenda, the family were going out, whatever it was, and that we’d all fall in with the plan. And often the child with autism wasn’t going to be part of the plan at all. And I used to sometimes think… I’ve never been sure about that, but I used to think, “Gee, I wish I had the t-shirt that says this is what might happen, or something.” You know?

Kristine Christ…:             Yeah.

Pam:                                 A friend of mine for her son with Asperger’s, she got a t-shirt saying, “I’ve said hello and that’s enough socializing for today.” And as a young adult, he’s really happy to wear it. Because he felt, “Well, now I don’t have to explain. I’ve got the information on the front of me.”

Dr. Lisa Interl…:              That’s fantastic.

Kristine Christ…:             Yeah.

Pam:                                 Yeah.

Kristine Christ…:             I think we could listen to you all day, Pam.

Pam:                                 That’s nice of you.

Kristine Christ…:             There’s so much there that even at the age of 21, this is still happening for us with Matthew. Getting him in the car, or taking him somewhere. There’s always a challenge. But then with a reward, we get him there. And it’s what you said before. It’s little steps to get to where you want to get them in the end, isn’t there?

Pam:                                 Yeah. And it’s creating, at great cost to yourselves, that bit of flexibility. So, just that recognition that when I go out, I’ll be safe. I was talking to an adult today who said, “I’m not doing too well at leaving the house, but I want to leave the house. But I’m not doing too well at leaving the house.” And it comes back to the same thing, unfortunately, to know you’ll be safe when you go to X, or you leave the house, or whatever, you have to actually leave most of the time.

You might have to go through a whole lot of steps to get there, but you have to actually do that, or otherwise the family ends up… Well, it’s too hard. And of course, it’s too hard. But when those discussions were appropriate, we’d talk about, “So, how will you increase your flexibility? So, that if something changes, or there is something to do that you don’t really want to do, but you’ll be able to still do it. How will that happen?” And like you said, because it was often, “Well, we’re going to have to make it worth their while.” But that’s okay. If that works and they learn that they’re still safe, that’s a good thing. Yeah.

Dr. Lisa Interl…:              Well, thank you so much for your time. We really appreciate it. And as I said, we haven’t seen you for years, and years, and years.

Pam:                                 And years.

Dr. Lisa Interl…:              Absolutely, years. But it’s lovely to catch up with you. And as I said, having somebody in your corner that you think, A, is an expert and knows what they’re doing, even if you feel completely out of control, is really valuable. And I really appreciate the support that you gave to us at that early years for Louis.

Pam:                                 Okay. That’s really nice of you. Thanks, Lisa. And Kris, and I’m really glad to hear that the boys are together and that gives them a whole basis of… Well, their own version of safety. I have a friend.

Dr. Lisa Interl…:              Exactly.

Kristine Christ…:             Yeah.

Pam:                                 And it makes a big difference as well.

Kristine Christ…:             Thank you so much. Oh, yeah. They’re actually together today and I think they’ve just done 7,000 steps together walking. So, if they’re happy, we’re happy.

Pam:                                 Yeah, that’s great. Okay, I’m glad you got there. Well done.

Kristine Christ…:             Thank you.

Pam:                                 Thank you. See you later.

Kristine Christ…:             Thanks. Bye, bye.

Speaker 1:                        Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcast. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers, and providers.

If you would like us to cover a topic, or invite a guest to chat, please email us at contact@loop-me-in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want. And of course, if anything in the podcast today has raised concerns for you, you can contact Beyond blue on 1322-4636, or Lifeline on 131114.