My guest this week is Greg Santucci, he is a Pediatric Occupational Therapist and the Founding Director of Power Play Pediatric Therapy in New Jersey. He has been an OT for over 20 years, and currently is a Supervisor of Occupational Therapy at Children’s Specialized Hospital in New Jersey. Greg is certified in sensory integration and continues to maintain a caseload in the schools and outpatient sensory gyms where he works. When he’s not playing with kids, Greg is lecturing nationally on topics related to challenging behavior, sensory processing, self-regulation, and best practice in the schools.
In this episode, Greg and I discuss how many of the approaches being used with children who exhibit challenging behaviors are outdated, they are not supported by current research, and there are many adults on the autism spectrum and with related kinds of issues who have started to speak out about the trauma they experienced during these kinds of therapies when they were kids. Unfortunately, these types of approaches continue to be recommended in schools, in some therapy settings, and at home, so I’m thankful for people like Greg who are advocating for developmentally and neurologically supportive approaches that actually meet the needs of kids. Learn more about Greg here.
Need help with improving your child’s behavior naturally?
Applied Behavior Analysis (or ABA)
- An outdated approach to training kids how to comply
- Typically used on kids with diagnosed, more significant challenges and issues like Autism, ADHD, behavior or mood dysregulation, etc.
- Comes from animal training research
- Still practiced in schools and some therapy settings today and is not proven to have meaningful success on a person’s ability to grow and thrive
Classroom systems used today need updating to a more meaningful approach
- The tags, clipboards, pom poms, and online point systems are unnecessary
- Instead of punishing the behavior, it is much more effective to connect with the child who might be causing the majority of the issues and find out the best way forward for them to learn, feel acknowledged, and not feel the need to be disruptive
- Dr. Ross Greene says “Kids do well if they can” and that’s 100% true
- Kids don’t wake up with the intention of causing problems. The behavior problems happen because they are lacking skill development, regulatory capabilities to do the things that we are asking them to do. The points, clips, charts, etc. aren’t going to teach them those skills.
A diagnosis does not automatically mean your child needs 20-40 hours of therapy
- For parents wondering what therapy they should get for their child, my question to them is: What does your child need help with? Are they connected to their child in such a way that they understand what they need most?
- Once parents understand the greatest need, that’s where professions like occupational therapy and speech therapy can really help your child (Masters level clinicians with training in neuro)
Registered behavior technicians
- Be aware that registered behavior technicians, while well-meaning, often have no formal training in neuroscience, child development, RBT or anything related.
- If working with this type of assigned help is not working, seek help from an accredited professional in one of these areas.
Follow Greg Santucci
Applied Behavior Analysis … 00:04:30
Systems for behavior in school … 00:25:30
The best way to support kids needs … 00:34:50
Registered behavior technicians … 00:39:13
Behavioral approaches that work … 00:44:00
Co-regulation before self-regulation … 00:47:45
Episode wrap-up … 00:50:00
Dr. Nicole Beurkens:
Hi everyone, welcome to the show, I am Dr. Nicole, and today we’re going to talk about a really important topic that’s near and dear to my heart: Behavior management systems, specifically how they are applied in many school and therapy settings.
If you have spent any amount of time listening to this podcast, scrolling through my social media content, reading my blog, listening to my talks, you know that I am a big believer in looking beneath child behavior to understand what’s really going on.
Behavior is just the external red flag that tells us that something is going on that needs attention and support. But that’s not originally how I was trained back in my first career as a teacher working with kids with autism and other neurodevelopmental disorders.
I quickly learned that the typical approach was about rewards, punishment, compliance and rote skill development.
It didn’t resonate with what I understood about kids, the brain or development back then, 20+ years ago, and it still doesn’t resonate with me today. Many of the approaches being used with the children who exhibit challenging behaviors are outdated, they are not supported by current research, and there are many adults on the autism spectrum and with related kinds of issues who have started to speak out about the trauma they experienced during these kinds of therapies when they were kids.
Unfortunately these types of approaches continue to be recommended, and even touted as the thing that parents need to be doing to help their kids.
I’m thrilled to see more professionals advocating for developmentally and neurologically supportive approaches that actually meet the needs of kids, and to see more parents doing their research and opting out of systems and therapies that are inappropriate.
One of the professionals who is very vocal in this area is Greg Santucci, and I’m excited to have him on the show today to engage in what I guarantee will be a very passionate and important conversation.
Let me tell you a little bit about Greg. He is a Pediatric Occupational Therapist and the Founding Director of Power Play Pediatric Therapy in New Jersey. He has been an OT for over 20 years, and currently is a Supervisor of Occupational Therapy at Children’s Specialized Hospital in New Jersey. Greg is certified in sensory integration and continues to maintain a caseload in the schools and outpatient sensory gyms where he works. When he is not playing with kids, Greg has spent the last decade lecturing nationally on the topics related to challenging behavior, sensory processing, self regulation and best practice in the schools. He has presented workshops with people like Dr. Ross Greene, Dr. Mona Delahooke, Tina Payne Bryson, people that you know if you’ve listened to previous episodes of the podcast, and other leaders committed to advocating for children and alternative brain-based solutions to support kids with behavior challenges. Greg is married to a pediatric occupational therapist, two in the family, and has two children, 12 and 13 and he is willing to share his toys with all three of them.
Greg, I’m so thrilled to have you here today, welcome!
Oh, it’s so great to be with you. Thanks for having me.
Dr. Nicole Beurkens:
So this is going to be a great conversation, we’re just going to see where this takes us because you and I can probably talk for days on this and share story after story, we’re both really passionate about this. I want to start, actually, if you’re willing — you have talked publicly and written about a story related to an encounter you had earlier in your career that really had an impact on you professionally on how you view the management of behaviors on your work, on your advocacy, and actually, you probably have several stories. But I’m wondering if you’d be willing to start by sharing one of those stories with us to really lay the groundwork for how you came to have the beliefs that you have around this and why you feel like this is so important.
Yeah, I have several stories and we’re going to start with a triggering story right off the bat. I can start with what I refer to as “The Wool Hat Story”, and it’s a story that’s still hard for me to actually talk about, which is why I do more writing about it. The situation was that I was working in a school that was a verbal behavior program, and verbal behavior is heavily based in Applied Behavior Analysis, ABA for short. I was working as an OT and I had gone to pick up a little boy in his classroom.
I had been late dealing with another challenging behavior. So because I was late, they were already out in the playground. And as an OT, working on a playground in the summer is just delicious for me.
There is so much motor planning and gross motor coordination and sensory processing that happened outside, that it was very appealing to me and, of course, the child to stay out there and do the session out there.
However, when I came out to the playground, the teacher who had seen me, immediately called the child down to say, “It’s time for OT, come inside.” Clearly, the little boy who was non-speaking or had very little verbal language didn’t want to go. And I had explained to the teacher that I’m perfectly fine staying out here.
However, in her training, she believed that once the demand was placed, she had to follow through with it. So there was a conflict there and although I expressed to her that I really would be fine, I know he’s going to resist, I really would be fine staying out here, and she held to her training and her belief and started to take the child off of the playground, and of course, he resisted.
So it was herself — and again, disclaimer, a very lovely human being, a person who is dedicated to helping children herself and a paraprofessional who was there started to physically bring this kid off of the playground, which escalated the behaviors further. I had stepped back at this time. I had said my peace. I tried to stay in my lane and as the child was taken down off of the playground, he dropped down to the ground screaming, crying, making sounds trying to express that he wasn’t really going for this. As they got him off the playground, he again dropped to the ground and he started kicking them. Again, communicating to then in any way he knew how, the only thing he had available at that moment to express himself.
And as he did that, that triggered the behavior plan that they had in place. And what I had learned — I did not know what it was at the time. What I had learned is that the behavior plan included what they called a visual screen. And what I saw happen is the teacher had asked the para “Should I get the hat? Should I get the hat?”, and I didn’t understand what that meant and she went outside and she got a wool hat. What I had learned by watching is that the visual screen was to, when a child gets aggressive, cover their face, cover their eyes with a wool hat until they calmed down and then proceed with the original demand.
So that was mortifying and the teacher who clearly was conflicted with this was taunting him with the hat, “Do you want me to use the hat?” and the child who had very little language was saying “No hat! No hat!” and on the inside, I was just being ripped apart watching this happen. The child settled. She didn’t actually cover his eyes at that time. The child settled and we were able to go inside. The child was a mess, I was a mess, everybody was shaken up. There was absolutely no humanity in that session whatsoever. So my session involved giving that kid the love that he needed and settling everything down. Obviously we were not getting anything done for the day.
As devastated as I was, I took a moment to think and realize that that can’t happen ever again, and I actually went out to my car and I called the State Institutional Abuse Line and ended up getting in a significant amount of trouble for that, I was actually fired 48 hours later.
That was devastating for my family and I had 0 regrets to that, but I’ve always known about the techniques and the tactics that have been used in a behavioral mindset and now I saw the worst of the worst in action, and this was a behavior plan that was signed off by multiple board-certified behavior analysts, followed through by registered behavior technicians and teachers, the entire administration thought this was okay. And what I had learned after the fact from friends in the school was that they carried wool hats in their back pocket, that was called the Hat Trick.
Parents don’t know what’s going on. They don’t know this is happening. So it was devastating and it fired me up to be a voice for kids who don’t have a voice. The only thing this child had was his body, and he did the best he could to let us know the aggressive behavior was caused by the adults. So that put me on the fast track of being a voice for kids. It was traumatic for the kid, it was traumatic for me, I still struggle telling the story, I still can hear him saying “No hat!”, but the reality is and what I’ve learned is stories like this are happening all over because this is the archaic system that we still work in. So one of my missions is to bring these stories to the forefront so that we know what’s happening and so that we can do better because the brain science and the research backs up the new paradigm and doing better.
Dr. Nicole Beurkens:
So true. And I appreciate you sharing that. I wanted to set the stage right out of the gate for what we are talking about here because these things do happen all over this country, all over the world, not just in schools but in therapy clinics, they’re happening in homes because parents are taught by board-certified behavior analysts, by people in these fields that this is how you train your child, this is how you help your child improve, this is how you manage your child and it’s important that we shine a spotlight on this because we are still doing — we’re operating in this paradigm that the research has long showed us — we’ve moved way past this.
Back in the 50’s, the 60’s when some of you may be familiar with Lovaas when he started using these principles of Applied Behavior Analysis into the 70’s, 80’s with kids with developmental disabilities, with autism and it was like this “Oh, wow, look! We have a way to train these kids to do things.” But we’ve moved way beyond that. We have an entire body of research in the field of neuroscience that we didn’t have then, that shows us what is going on in the brain, what’s needed. And yet in the field of autism and behavioral disorders, we have gotten stuck in this realm of behaviorism that actually, as a psychologist, I can confidently say the field of psychology moved on from this decades ago.
The only place you will find Applied Behavior Analysis still having a stronghold is when we are talking about kids and individuals with autism, with more severe emotional and behavioral disorders. It’s really frustrating, it’s appalling, it’s all of those things.
And I think there are probably people listening who are saying, “Well, Greg, that’s really a sad and traumatic story. That’s terrible that those people did that, that’s really abuse. But that’s not actually what’s happening when my child has one of these behavior plans at school” or “My child is in ABA therapy. That’s not actually what’s happening”. I’d like you to respond to that because you and I both have some strong feelings there.
Sure. And I have learned a ton from autistic adults who have received this type of therapy and are now speaking out. And I say “therapy” and I want to pull back from that. I am an occupational therapist. We’re talking about behavior analysts and behavior technicians. I don’t necessarily want to call that field “therapists”. To me personally, there is nothing therapeutic about it. That’s me being a little bit more controversial. So it starts off mild. The story I gave was extreme. But when you put your hands over a child’s hand and you say “Quiet hands” or you’re telling a child to ignore their body and comply, when you put your hand on their chin and you say “Look at me when I’m talking to you”, making eye contact, especially for autistic children is very uncomfortable. It’s uncomfortable for some adults.
So some neurotypical adults can say that looking at you is difficult. Also if an autistic child or someone who is uncomfortable with it, if you’re focused on all of the facial expressions that are happening, you’re not getting the content. So we’re applying this neurotypical standard to a neurodivergent person. So that’s where it starts, showing them a food, a reinforcer if you will, a snack, a Skittle, a pretzel, and holding it back until they do what you say, that’s what’s happening a lot. So, yes, it is happening.
The other thing is when you have someone in your house for 20, 30 hours a week, you start buying into this and sure, a lot of it is play-based, but then there are the times where they’re making kids comply. And what it’s doing is it’s forcing kids to ignore what their body is telling them just to comply, just to meet the demand.
Autistic adults will tell you that that is masking, that they will shut everything down, put their mask on so that they can do what we say and then get whatever reward, whatever carrot and stick we’re dangling in front of them, and usually it’s something they really, really want. So that is much more prevalent. Withholding the pretzel or saying “Quiet hands” or saying “Look at me”. So yes, that’s what’s out there, and I think that’s what parents can relate to more. And that, I would say, is an enormous red flag.
Dr. Nicole Beurkens:
Yeah. Absolutely. And it’s this compliance. It’s rooted in compliance that the goal here is this training to do what you’re told and to exhibit these skills. What always struck me as so bizarre about that, aside from the sort of non-human aspect of it is we know that children’s brains learn and grow and develop through number one: Meaningful connected interaction with other human beings, and number two, through meaningful engagement and functional activities and tasks. That’s how I was trained back in the teacher education program, it’s what I learned going through my PhD in psychology, and yet, in behaviorism, in these approaches, these things are not even part of the equation. It really is rooted in a history of animal training, and most people do not realize that Applied Behavior Analysis, behaviorism as a field is rooted in animal training, it’s still used.
You’ll see many of the studies that are used to support this are done with chickens, with other kinds of animals. That’s all well and good because animals do not have a frontal lobe that’s developed like human beings.
Humans have a very different brain and we need relational connection, we need engagement, we need safety in order to grow and develop. So it’s taking this approach that’s rooted in working with animals and it’s applying it to human beings who, while they may have some neurological challenges, some neurodivergent ways of their brain operating, they are still human beings who need the exact same things every other child and human being needs in order to truly develop meaningful language, in order to truly develop meaningful relational skills, in order to feel safe in their bodies and in the world.
That’s the piece at its root that I think many people don’t understand, and that right out of the gate we are off on the wrong foot when we’re starting to look at approaches like dangling rewards, like training for compliance, like doing these drills for skills, even for speech, for things like sitting in a chair — we now are off on a path that is so divergent from everything we know about how the human brain works and what we actually need to be doing to help these kids grow new connections neurologically as well as relationally.
Right, and I think it’s fascinating to me, the lack of humanity that is in some of these approaches. If you look at this time in our history with the pandemic, as we’ve all felt the lack of human connection and that has hurt all of us, so the work of Bruce Perry, and Born To Love and how humans are wired for connection and we use all of these rewards for compliance, but yet, we as adults know that for grandparents, hugging a grandkid — that’s what they miss the most during the pandemic, and that’s true for every human being.
When I talk to teachers who have all of the charts and the pom poms and the points, if they have the courage enough, they really don’t need any of that. Instead of investing the time and energy into those systems, they don’t have to be replaced. Genuinely, their relationship and that mutual respect are the best behavior management system that we have, and it’s a cross-development across the lifespan, and we know it in our hearts to be true, especially now because of what we lost because of the pandemic.
Dr. Nicole Beurkens:
I think that’s such an excellent point, we’ve all had a real opportunity to feel that in a very real way over the last year. And I love what you said that a teacher’s relationship with students is the best “behavior management tool”. I think that’s so true and there is no better example than the kids that you and I both see who maybe one year have a horrific year in a certain classroom with a certain teacher and there are problems, constantly, and lots of issues. And then they move to another classroom the next year with a teacher who connects with them in a different way and who they feel safe and supported by, and all of the behaviors go away!
Dr. Nicole Beurkens:
That’s right! And it helps us to see that the problem is not in the child, the problem, a lot of the times, especially with how these things are managed in school environments is in the environment and in our response as adults to what kids are dealing with and our continued emphasis on what’s going on on the surface — The kid’s not sitting down and focusing, or the kid’s not turning in their work, or the kid’s getting into problems on the playground, as opposed to looking at what is actually going on beneath that and what we can do to support this child so that they can function in ways that are more adaptive to the situations, so that they feel like they can do the work that’s being asked, they feel like they are being heard and cared for. That piece, we still have it so backwards.
I could tell you a story that happened to me this school year with a little boy in the class, and he was the kid — he can’t sit still. It’s not that he won’t sit still, he literally can’t sit still. So I was able to convince the teacher that standing is probably going to be better for him, but he was super smart, and this is regular education. He knew the answer to everything, and he needed the teacher to know that he knew the answer to everything. Any teacher listening to this knows this is the kid who is disrupting class, who is calling out — what I would call a sensory-seeking kid.
So we got him to stand. You know, he was the kid who was always his clip moved or points taken away, but I was in the class and I made a deal with him. The first thing I did was I validated him. “I noticed you keep calling out and raising your hand, what’s going on?” He said, “Well, I know the answer!” “Well, I know you know the answer, you’re the smartest kid in the classroom, probably the smartest kid in the school. However, the teacher has to make sure that the other kids in the class are learning as well.”
So we came up with a deal, and I was in the class for a substantial chunk of time, so I made him a deal that if he knew the answer, he would give me a little signal. So I was like the para in the class, if you will, for the time because I was working with other children. So sometimes he would wave his pencil, sometimes if I was in the area, he would whisper the answer to me. And then the deal with the teacher was that she would actually call on him early on in the lesson. All of a sudden, everybody is happy. He is validated, the teacher is able to move the kids forward, you just don’t need the clip chart.
And I get it, when you have 20 kids in the class, the one or two kids who are constantly disruptive — I understand the appeal of that quick little tag just to kind of shock them and keep the group moving forward, because that’s how teachers are being measure if they are effective or not: Are they moving the group forward? So this one kid is affecting the teacher’s ability to get the lesson in, that’s what I hear all the time. But again, if you spend that time and energy on the child and not just the behavior, everybody wins. So this kid was validated, the teacher got the lesson in, everybody is happy and clip charts be damned, we don’t need them.
Dr. Nicole Beurkens:
So let’s go there because that’s a more pervasively used method with all kids. We’ve been talking about how behavior sorts of paradigms, ABA types of things with kids with diagnosed, more significant challenges and issues, but here, we’re really getting at how a lot of classrooms, at least in America, operate for all the kids in the class, which is these stoplight kinds of systems, I’ll move your tag to yellow, move it to red, these clip charts, these pom poms in the jar, these earning things. Now there are these elaborate online point systems that schools are using, that parents are supposed to log into to see, ClassDojo and these other kinds of things. So this has seeped into so much of what goes on in classrooms, in education, so it’s not just what we’re doing with kids with autism or kids with more significant behavior challenges. This is really a pretty pervasive way of approaching behavior, isn’t it?
Yes, and it’s annoying, for lack of a better word. For a kid to have success in the classroom, the curriculum is important, and also are the self-regulation skills that you need in order to be able to take in a curriculum and then perform, but those self-regulation skills: The flexibility, the adaptability, the ability to problem-solve, spending time on those skills is actually what’s going to make employable adults. Now, in fairness to teachers, they didn’t get a lot of this in their education, so they’re still learning it and again, the vast majority of teachers that I have met are overworked, overstressed, absolutely amazingly wonderful human beings who wish they could spend as much time as they needed to to connect with these kids and move them forward.
So again, I understand the appeal of these clip charts. There is a book, Lost At School by Ross Greene that really gives teachers the strategies and the language. And I go into that classroom and for that one teacher who is really looking for that lens shift, I’ll buy them the book and then I’ll show them how it works. How do you do a whole class, a collaborative way of getting the community working together to support each other? And then again there’s just no need to go to your cell phone and take away points from a kid or takeaway class bucks so that they can buy something. It’s just completely unnecessary, it just takes — they need that additional tool in order to make the leap.
Dr. Nicole Beurkens:
Well, and I think the other piece around this, and I think so many of the parents listening can relate to this because they have kids in classrooms, in settings where this is how it operates, and it creates a lot of stress at home, right?
Because kids come home very dysregulated, very distraught, parents are fielding notes and whatever all the time about this stuff, so I think this is really relatable for parents, but what these kinds of systems assume, and it’s a wrong assumption, but what they assume is that this is a choice, a conscious intentional choice that children are making and fails to recognize that this is a lack of skill, a lack of brain development, a lack of executive function and so these approaches really use shame and external rewards, as if the problem is that the kid just needs to have more motivation to intentionally make the choice to focus, to turn their work in, to whatever. You and I both love this quote from Dr. Ross Greene, “Kids do well if they can.” And so the premise of these systems is so off-base because for any of these kids, diagnosed or not, if they are struggling, it’s not that they are intentionally wanting to behave badly, to create problems or whatever. It’s because they are lacking skill development, they are lacking regulatory capabilities to do the things that we are asking them to do. So all the points and the clips and charts and whatever in the world aren’t going to teach them those skills.
No class clown wants to be the class clown. He would prefer to be doing well. The young child who is crying on the floor at Target because they didn’t get the toy that they wanted, they would prefer not to be there. That’s not working out. We really need to remember that. We were saying yeah, “Make the choices, make the choices” They’re doing the best they can with the skill so perfectly. You just have to commit to it because the reverse of that, “Kids do well if they want to”, like you said, then we’re trying to get them to want to do well and that’s where we’re driving them to want to do well. “If you do well, you’ll get this”.
If you say “Kids do well if they can”, well that implies helping them when they can’t. Total game-changer, totally different trajectory. So it moves away from the behavioral strategies that parents and teachers use all the time and more into this developmentally-informed approach that helps with connection, helps with emotional regulation and just helps kids do well. It just feels better.
At the end of the day, all of this brain-based approach just feels better because it is based in compassion and humanity versus based in compliance. So if you want to feel better as a teacher, if you want to feel better as a parent, go here because your kids do well, you do well, because parents and teachers do well if they can. You’re going to have a calmer household, you’re going to have a more structured and organized classroom, you’re not going to let the kids just “run the show” or “rule the roost”, whatever slogan you want to do.
You’re partnering with your child and your student, and when you’ve partnered, that’s when you get more durable changes in behavior. And I say this, not only as an OT, but I say this as a dad with a 12 and 13 year old, I’ve been here for a while and it’s paying dividends now.
And I’ve got some grief and aggravation from in-laws and everything when I was first out on this journey, and I held my ground because it felt right.
Now I’m seeing that it does pay dividends with a teenager who will still come to me, is not scared of me, is not scared that I’m going to weilled my power at any moment and take something away from them. So that trust that I have in a very tricky time of life where hormones are raging — and I screw up everyday, but I’m really comfortable where I am with my relationship with my kids because of this developmentally-informed, biologically-respectful approach to helping kids manage their behaviors.
Dr. Nicole Beurkens:
I think you made a couple of important points there that I want to hone in on: One is how it feels as a parent in particular in being willing and able to hone in on that, and the other is related to what we do instead. I think they both come from the same place of parents saying “Okay, when my child was diagnosed with autism, with ADHD, with ODD, with disruptive mood dysregulation”, whatever the labels of the day are, “my kid was diagnosed with this and this type of therapy, these behavioral approaches, these ABA approaches, these are what was recommended to us, this is what we were told to go and get, and in fact, this is what our insurance and our state will cover. This is what the school does, this is what we were told to get.”
So let’s talk about that because I think that’s a real issue and there is a conflict that I see within so many parents who come to our clinic, of on the one hand, “I want my child to progress and improve, this is what everybody has been telling us to do”, but on the other hand, them feeling really unsettled and really uncomfortable with it and I can watch parents try to reconcile those things of “I want what’s best, this is what I’ve been told is best, but boy does this not feel good or right to me” and it’s just another trauma that we as a field inflict on parents who are already struggling.
Right, wow. Okay. So just because you have a diagnosis of autism does not mean that you need hours and hours and hours and hours of therapy. The diagnosis does not bring that about. The need for support is what does. So the original study, and you had mentioned Lovaas, that was done back in the 70’s or 80’s, I believe, it was only with boys. The people were handpicked, so it was a very biased study, and that was kind of the groundwork for later studies. So I always question how a three or four year old requires 20 or even 30 hours of therapy a week in addition to all of the energy they have to expend just being a kid. Why does, all of a sudden, therapy have to be a job for them, in addition to being a kid? The motivation may be — and parents have to soul search this, “Am I trying to make the autism go away?”, and that’s something that they really have to internalize, and what I have learned is that autism is a different neurotype, it’s a different way of processing and experiencing the world, and my goodness, it should be celebrated. I’m not a big fan of functioning labels, and I know kids need more support than others. Every kid can play, every kid has strengths. Again, starting with that connection and really understanding your child, that’s where professions like occupational therapy and speech therapy can really help you understand children, Masters level clinicians with training in neuro, but for parents wondering what therapy they should get, my question to them is: What do they need help with? And start there.
In my day job right now, we do very short episodes of care. 8, 10, 12 sessions and we spend the time teaching the parent all about their kids, and they come in and they see their children thrive, and they see a strength-base model of treatment where we are celebrating their strengths and we’re using that to build up the areas where they need help, we’re explaining how they perceive and experience the world, and then we’re sending them back home to try it, and if they need help? Come on back. If you’re doing 20, 30 hours a week, you’re becoming dependent on that individual, that is a very unhealthy relationship, and you’re going to start believing things because there is plenty of data to show that it’s “working”, and I don’t necessarily know what “it’s working” means, but again, the therapy needs to be guided by where your child needs help with, not just because they have this diagnosis. So do your homework, push back on the doctors who just write the blank check and they say, “Hey, you need all of this, go get all of this.” Even that, it’s a little less stressful.
Dr. Nicole Beurkens:
Well, I find that it really takes parents out of their most important role as the key relational figure in their child’s life and puts them in the role of taxi driver and procurer of therapies, right?
It says “No, as a parent, you are not important here. What’s important is hiring all these other people who know what to do and can help your child improve”, the irony of that being if you look at the experience and credentials of most of these behavior techs and people who are being sent into homes and schools to do these 20-40 hour a week programs, they maybe have a high school diploma and some training beyond that. Maybe they are college students. I have known several people in our community with absolutely no credentials whatsoever who have gone and gotten very brief trainings, and they are sent into homes to do these behavioral programs with kids they absolutely have no business doing that, and parents are being told that these people know things and can work magic and have skills that are more important than what the parent could be doing with the child. And nothing could be further from the truth.
This is actually Google-searchable, that the people who are going into your home are registered behaviors technicians most of the time. They have no training in neuroscience, yet your child has a neurodivergent brain. They have no training in child development, no training of being an RBT in child development or anything related to that. The requirements for a registered behavior technician, the people who are coming and saying that doing ABA therapy, this is where I get offended, where a technician, a good person with a huge heart who is there to help children, I always put in that disclaimer, this is not about the individual. But the requirements are: You have to have a driver’s license, a high school diploma, 40 hours of observation and you have to pass a test. That’s who’s coming into your house for 20 and 30 hours a week, and that is problematic. True, when they’re running their trials and they’re taking their data, that’s fine, but when there is a behavior challenge and all of a sudden stress levels start to increase, it’s dangerous.
Dr. Nicole Beurkens:
I argue that even the trials are dangerous and inappropriate. Look, here is where the research supports the use of these kinds of behavioral approaches, is if the outcomes, if the goals and the outcomes that you have for your child are things like being able to name flashcards, being able to point to things, being able to follow a one-step or a two-step command, but here is the problem with that: Most parents, every parent that I know, their goal is that their child grows up to be a happy, well-adjusted person who can have some, whatever level of independence is appropriate for them, and have a good quality of life.
There has never, ever yet been a study showing that Applied Behavior Analysis or anything in this realm of behaviorist approaches leads to those outcomes.
In fact, there is no evidence that doing 40 hours of intensive early behavioral intervention leads to any kind of different outcome than no therapy at all. And these are the things that people need to be aware of that this is the stuff that’s not getting out there that people aren’t being told.
And I think we’re doing better and parents are doing better educating themselves. Parents are really starting to do their homework. We still have a huge problem with the doctors and with the payers who are just fine with the status quo, and it’s not cheap.
I just had an explanation of benefits sent to me, and I did the math. This intervention that is happening for so many hours a week and it has to be 20 hours or else the insurance is not paying for it, worked out to be $130,000 a year! And like you said, with no longitudinal research proving it’s effectiveness.
So what are we doing? And the real question is, well how do we get the doctors to know about this and the payer to pull back? I think we’re getting there and we have to keep pushing, but yes, doing nothing is not necessarily doing nothing. Doing nothing formally is educating yourself about your kid, which every parent wants to do. You want to learn how your kid works in processes and how they think so that you can better connect with them and you can work together. That’s the starting point. You’re right, you don’t need all of the professionals, you only need the professionals where you need help or your child needs help because there is a lagging skill.
Dr. Nicole Beurkens:
That’s right. I love that focus on “Let’s look at what your child, what your family, what you as parents need and focus there.” That’s going to be different. Even with 20 kids with the exact same diagnosis, the needs and the focus areas and what’s important to that family may be different. So we need to take a much more individualized approach and to people who are listening, they need, “Okay, yeah, I hear you talking about relationships, I hear you talking about development, but kids do need to learn to regulate their emotions and behaviors. I have a child who is all over the place, who maybe is a danger to themselves because their lack of awareness is creating all of this distress”. Let’s speak to those parents because there is this thought that “If I don’t use these behaviorist, behavior-focused approaches, then this is going to be my kid’s life” and let’s be clear that that’s not the case. There are approaches that can be used as alternatives that are really effective.
Yeah absolutely. And again, there’s a wide range of abilities there that makes it difficult to give that strategy, that it really comes to knowing what your child needs, knowing what developmental or cognitive level they’re at, what level of understanding they will have of the intervention. But for a child who is constantly on the go, or a child who is difficult to get their arousal level up, I’m going to give a shoutout to Amy Lawrence who is an occupational therapist and Jacqueline Fidi who is an educational consultant, a PhD and is autistic. They have autism level up and they often talk about energy levels. So in terms of understanding what your child needs, they speak to — your child has a certain energy level, and when I’m teaching kids this, I’ll teach them that 100 is really high and 0 is really low. And 100 is not bad if you’re in gym class, and 100 is really problematic if you’re trying to go to sleep. So when we’re talking about teaching kids and getting them to a place where they are actually available to learn, their energy level has to match the task at hand. So we always talk about regulation and everything. Regulation is not necessarily calm. Regulation is your energy level matching the task. So if you’re going to gym class and you’re at 100, you’re perfect. If your energy level is 10 and you’re about to go to sleep, you’re perfect. If your energy level is 100 and you’re walking into the library, what do we need to do to get your energy level to match that? And that’s where, for kids who are able to collaborate, that’s where you’re able to problem-solve. Like okay, maybe I need to move, maybe I need to carry something heavy. That’s when you use all of your sensory strategies. For kids who are not able to communicate through words, well they certainly communicate through their behaviors and their body language, and that’s the detective work that parents need to do in order to get them to succeed, and again, you’re right, this is all about just helping your child succeed at life as they move through the developmental process.
Dr. Nicole Beurkens:
That’s right, and to recognize that emotional and behavioral regulation, your child’s ability to cope with uncomfortable emotions, to find that right level of regulation and energy given the activity, those things develop through relationships, through meaningful engagement and meaningful activities and tasks and things with other people. I so want parents and professionals to hear this, that using behaviorist approaches is not the only way that we help kids improve with their behavioral regulation. True emotional and behavioral regulation grows out of a developmental relational process and that’s why Greg and I are so strong about focusing on those kinds of approaches, approaches that are informed by neuroscience, by child development, by parent-child interaction and relationship because that’s where you truly get the emotional and behavioral regulation abilities that people are really wanting for their kids, and that are so much more productive and so much more powerful for people as they go through their lives than any kind of compliance that we might train into them by using Skittles or French fries of whatever else we’re doing.
Yup, co-regulation before self-regulation. So we have to understand that as parents: Kids need you. They need you to teach them. They don’t need your sticker, they don’t need your Skittle, they don’t need that threat of taking something away, they just need you. So if you approach a challenging situation as, “You know what? I’ve got your back and I’m here for you and we’re going to get through this together”, completely game-changer. So co-regulation before self-regulation, and the most important tool in our toolbox as parents and teachers is yourself.
Dr. Nicole Beurkens:
So powerful. Love that! You and I can talk forever about this. I know we need to wrap up. I want to make sure that you have a chance to share with people where they can find out more about you, your work, what you’re up to, because I know they’re going to want to follow you and engage with you outside of this episode.
So my space right now where I’m able to put out my rants and present the research for alternative approaches is by far Facebook, and that’s at Greg Santucci, Occupational Therapist. My website is powerplaytherapy.com, gregsantucci.com is coming soon, we’re building that now. And I’m on Twitter and Instagram, but Facebook is primarily my go-to space, and I have a community of 20,000 people right now and I’ve only been on that page for 9 months, so I love the community, there are parents, professionals and autistic adults all together, fighting this fight for our kids, advocating for our kids who need us to do it.
Dr. Nicole Beurkens:
I love it, and we’ll make sure that we put all the links to those in the show notes so everybody can easily find those and I just want to put in a plug for following you on Facebook because there are some really great discussions, there are some great examples, you do some really nice live segments talking about some of these things, so just lots of great resources. If you’re a parent or a professional and you’re looking for not only more information around these topics, but just community and being around like-minded people, and Greg, you do a great job of moderating that page as well, which is not always easy around sensitive and contentious topics like this, but I just want to put in a plug for that, that I think those of you who are looking for a community around this, Greg’s page is a great place.
Love my comments section, and it is difficult to manage, but I love my comments section.
Dr. Nicole Beurkens:
That’s great. The dialogue is important and I think you’re opening people’s minds, people who maybe come into it just like, “Let me see what this is about, let me learn a little bit more.” It’s very eye opening, and you can watch people come into new understandings about that, which is so important. When we can change the way that one parent or one teacher or therapist or professional is looking at this with one particular child, that’s how we get traction to ultimately change the broader field of all this, so thank you to you for all of your efforts and the advocacy and everything that you’re doing, and thank you for being on the show today.
Thank you, I appreciate that and again, thank you for having me. This was wild and fun, and whoo!
Dr. Nicole Beurkens:
And it’s only 11AM!
Dr. Nicole Beurkens:
And thank you, as always to all of you for being here and for listening, I really appreciate your support and being a loyal listener of the show, and we will catch you back here next week for our next episode of The Better Behavior show.