What I learned about Autism + Behavior (at Sensory Summer Camp)

 Welcome to Connected and Capable. I am Alisha Grogan, and I am so excited for this episode. I am so excited to be back after we have taken a month or so break, uh, this summer from the podcast. I have missed it. I am often thinking about what we are going to talk about next. And the month of July is a big one around here, um, because for the third year, I hosted a in-person sensory summer camp that is 20 hours long for one week. 

It’s basically four hours of fun, play-based OT, uh, and giving kids a intensive experience with therapeutic activities. We have kids that range in age from five to nine, and some kids have no diagnosis, and some kids have ADHD, and most of our kids had autism, sometimes with or without another diagnosis. And so this year at camp, there was just so many things that were really highlighted for me, and I wanted to share those with you. 

I know that a lot of you listening may have a child with autism or neurodivergence, and even if they don’t have an official autism diagnosis or maybe they are ADHD, there’s a ton of overlap here in these observations. And also, if you are a therapist, you are certainly providing services for kids with autism. It’s just if you’re working in pediatrics, that is certainly a component of it with such a large number of kids having autism. 

So there are just, uh, really important takeaways, I think, from our camp experience that I wanna share with you today. Some super practical, uh, a surprising regulation tool that I have always loved as an OT, but man, was it really, really helpful this year, even in the middle of a meltdown. And so I wanna share that with you. I also wanna talk to you a little bit about the neuro affirming conversation and what it really looks like in real life with your child, with your, uh, clients. 

There has been such a massive shift and a really good one in so many ways since I started my career over twenty years ago in how we look at the challenges or what have often been framed as the, quote-unquote, “behaviors” that a child with autism may be exhibiting. So keeping all of that in mind, uh, that’s where we’re headed today. 

But first, I do wanna give just a huge shout-out and thanks to our camp sponsor for the third year in a row. Fun and Function, which is an online sensory tool store, has supported our in-person camp by sponsoring it, providing scholarships, providing equipment, allowing us to have more staff available at camp so that kids are just getting so much hands-on attention. And I’m just so grateful to them, uh, as a, as a company and for what they stand for, and that they are really invested in supporting kids In real life. And so I’m just so grateful to them. 

You can check them out at funandfunction.com. We have more about them in the show notes. I’m gonna, uh, share a coupon code as well, and that is also in the show notes. So there’s some fun stuff that they have for us. But let’s get into a little bit more about what this sensory summer camp is. 

So what are we doing there? Uh, it is four hours, as I mentioned, and we are rotating through a schedule about every 20 to 30 minutes from different activities. We start with a circle time that includes some social skills, some emotional regulation tools, and some important reflex integrating activities, and we just kinda do this circle time every single morning. We start out there. We do Wilbarger brushing, so we’re using one of the silicone brushes, brushing on arms, hands, and legs. We’re doing that together because so many of these kids have tactile sensitivity. We send them home with a brush at the end of the week. We practice that all week. 

We then move to a very sequenced obstacle course, and that really is the moment that I think sets our day up for success. Kids are moving. They are getting super regulated. And then throughout the day, we continue with a more sedentary activity. We move into, in this case, craft, and we bounce back and forth between a movement-based activity to a more sedentary activity throughout the day doing scavenger hunts, and we had a slackline this year, uh, that was awesome that we… from Gibbon that we put in between two, uh… We actually were able to bolt right into their… the ground with our slack yard. We had kids walk on that every day. 

We did different types of sensory bins and sensory play. We had playground play. We played regular kind of kid games like red light, yellow light, green light to work on impulse control. Lots of great things every single day. Every minute is packed and utilized to be making the most of all of the developmental skills, but all in a very fun and play-based way because it’s so important that kids are having a good time, and these are fun things that they wanna be doing. 

And so we’re actually gonna talk a little bit about what that looks like, though, uh, when a child is struggling. As I had already mentioned, several of our kiddos had a, has a diagnosis of autism, and the challenges with that for that child were pretty unique from each one of them. So we, we know that autism is a very unique diagnosis, and I think what we have to really keep in mind, and again, I was just reminded of this so powerfully is that we have to realize that a variety of areas are often impacted for any given child that has autism. 

These can be things like social skills, uh, sensory processing, uh, executive functioning skills, so like that impulse control, the black and white thinking, uh, flexibility, right? A variety of things can be impacted. And for each child, they will have more or less needs in any of those areas as, as well as more. I d- certainly do not cover every area that autism impacts. 

But as we look at each one of those areas that, that tend to be impacted, a child is gonna have varying levels of needs. When we stand back and look at the whole picture of all of these different areas that can potentially be impacted, we end up seeing this unique fingerprint for each child and the challenges that they may have Because of their executive functioning skills or their social skills. 

And so I wanna highlight some of those today and the ways that they showed up and, and that there’s actually even more going on than I think we realize. And again, this camp experience is such a unique opportunity for me as a therapist because traditionally OT is set up in small increments, right? Depending on your setting, I, I was very fortunate to spend a large part of my career getting one-hour sessions with families in an early intervention setting, but having also worked in school and outpatient in a variety of settings, sometimes you might have 15 minutes with a kid once a month, especially in a school setting. You’re kinda just checking in. When I get to spend four hours a day with a small group of kids, I am really getting to understand way more about their actions and their needs and their challenges in a much deeper way, in a much shorter amount of time over the course of a week. 

And so I can really see the way that they’re, uh… they will go throughout the day with different activities. So one of our kiddos, uh, so sweet, that has autism early in the week, uh, has a very special interest, okay? So his special interest is, uh, related to stuff in nature, and he has a little jar that he has brought with him the first or second day. This, this happened the second or third day, and this day he forgot it, which is okay, you know, right? Like it’s a little bit hard now, and so he is getting noticeably upset at drop-off. 

He wants mom to go get this, go get this jar, and so that he has it at camp. So obviously, you know, we can see right away that there is some black-and-white thinking here and a lack of flexibility. That’s what we see on the surface. He’s starting to get noticeably upset. His voice is increasing. He is maybe stomping his feet a little bit. Uh, mom is wonderful. She does such a good job staying calm. Looks at me and she says, “Are, are you okay?” And I’m like, “Yep, we’re good. We got this.” And I’m expecting in the next few minutes that this is gonna get harder before it gets easier because mom is now gonna be leaving, and that is exactly what happened 

Uh, so much so, he runs into the middle of circle right before we’re about to get started and picks up our giant BeneFidgets and throws it up in the air. Now, fortunately, nobody was around right then. The kids were drawing on the wall. We had p- big, giant pieces of paper that they were drawing while we were waiting for everybody to come in and get settled. And, uh, the kids noticed, but just kind of went about doing what they were doing, which allowed me to just have a few minutes to decide, “What am I going to do in this moment?” 

Now, I’m sharing this because I think that this type of situation plays out at home. So if you’re listening as a parent, right, how many times do you see something like this, whether your child has autism or not? How many times do you see this if you’re a teacher playing out in your own classroom or something similar or in your therapy room as a therapist? Now, I have a decision right in that moment. So it escalated faster than I thought it was going to, and it was thinking in real time because now there’s, there’s not a lot of time to do it, and I have a decision right in that moment. 

Now, I can look at this through behavior lens and see, “Wow, he just threw that. This is disruptive to the classroom. He should not be throwing things. This is not appropriate behavior.” Or I can look at that through a lens of, “What does this child need right now?” Basically, what we’re talking about is compliance. Okay, like this… You know, are we looking at this through a lens of I’m– like, “This child is not complying. He– this is not the rules. 

Surely, this child understands that this is not what he is supposed to do.” Or I can look at it through the lens of his regulation, of his nervous system, and what is going on and what he is trying to express. The fact that he is a child, period, means that he does not have the developed skills yet to communicate exactly what he is feeling, to manage emotional regulation completely because it’s still developing, and that’s what I see unfolding. And so I have this choice to make, and so I’m sure you can imagine what I choose, right? 

And I have to also– let me just sidebar here, and this is gonna come up with some of the other examples that I share today. that there is a moment that I need to do a regulation check with myself, right? Because I, I am also a person with a nervous system. Now, I am an adult, which is again, much different than being that child, but I am an adult that is still experiencing somebody else’s emotional dysregulation, uh, items throwing and flying through the room. And so I’m immediately telling myself… Now, and I will say, uh, in my therapist hat, this is something that I’m kind of mentally prepared for when I show up at work that day, right? 

Like, I am like, “Yep, this is, this is my job helping and supporting kids,” because these skills are developing, again, baseline, but even more so because many of these children have even greater challenges with emotional regulation because of the way their brains are wired, and so that they need more support. And so I, as a, as a therapist, kind of have that hat already on. Now, I, I will say as a parent, I think this takes some extra effort. At least it does in my own life. I’m not always thinking that way as a parent. 

But I think the moment is still the same. In that moment that I see this happening, I am simultaneously telling myself, “It’s okay. We’re gonna get through this. Wow, he looks really upset right now. This was really hard for him.” And so as I’m choosing now, I’ve now made the choice that I am looking at this through a lens of what this child needs as opposed to this child is being non-compliant, or this is all behavior-based As soon as he throws these items, he collapses to the floor. 

He’s now sitting on the floor, and he’s crying very loudly. I immediately go, and I lower myself to the floor, and I start to just, uh… I, I already know this kid for a day or two, so I put my hand on his back so that he feels some proprioceptive input. I’m firm when I put there, but I’m also watching. Maybe he doesn’t want me to touch him right now. Sometimes that touch can be really beneficial. Sometimes that touch can be disarming and more dysregulating, so I’m watching. I put my hand on his back, and he’s okay. 

I immediately start to lower my voice. I’m very aware of the tone of voice that I’m using, and I start just saying some very simple things. I acknowledge what I think he’s feeling. “It’s upsetting, isn’t it? Yeah. You don’t– Your, your nature jar is not here.” And so I see him start to relax, and I start to just slowly just put my palm on his back in circles. So now I’m getting some rhythmic movement. I’m still watching. Is this helping? Is this something I need to stop? It seems to be helping, right by me because all of the fidgets just flew all over the place. There are some vibrating tools. 

Okay? And so this is one of our really practical tools, and I’m giving you a very specific example from camp in this story, but gosh, I could share 20 more of how many times we used vibration this week to help kids focus, attend. Vibration is a huge and powerful dose of sensory input that can be very relaxing. Now, of course, every sensory system is unique, and so that’s not something that every child responds to. 

I will say every one of our campers really responded to, were at least curious about and were sometimes using vibration to help them either sit at circle time or to help them calm down. So in the middle of this meltdown, my friend that was having a hard time had used this vibrating neck pillow. For those of you watching on YouTube, you’ll be able to see this. It kind of looks like a travel pillow. Uh, it’s very soft. You can kind of hear it. 

There it goes. Just turned it on there. And it can go around your neck, which I was not about to do to him. Okay? So he’s sitting on the floor, and even though he had used this the day before when he was getting upset about the order that something was happening because we were doing it a little bit differently than the day before, very small change, but again, showing me that flexibility is one of his greatest areas of need that I did see improve greatly by the end of the week I think it was also his capacity for flexibility was much lower at the beginning of the week because what was underneath this not having the nature jar, what was underneath the struggles to be flexible was likely some anxiety. 

I don’t think he was able to articulate that in those moments, but it may have been hard that he was leaving mom, hard that he was at this new place with people he was just getting to know and didn’t really know very well yet. And even though we had supports like visual schedules that we were going over every day, which he really liked and would often go back and check, it was still new, and it was a huge step probably out of his comfort zone, and he was doing it. There was a lot to celebrate here. 

There was a lot that he was enjoying at camp, but there were some hard moments. And so this, this bug jar or the small change that had happened in the schedule the day before made it feel like he didn’t have the capacity for that. But when we used this vibration, and so in drum circle the day before, he had worn it around his neck, and as soon as he put it on, it was the first time he had used it, he immediately started to giggle. 

So he loved this sensation. So now I’m sitting with him on the floor the next day, and I have an opportunity. It’s sitting right next to me. So I first just turn it on. I know he can hear it. You know, you can kinda hear the, the soft buzz. And so I turn it on, and, uh, I just put it on my leg very close to him, and I see him look down at it. And I ask him, “Would you like this?” And he says, “No, I would not like it.” So immediate demand avoidance, okay? 

I suspect in this moment, which is how demand avoidance shows up, the answer to a question is almost always no even if, e- even if they don’t mean that It’s just a protective system, which again is pointing me back to anxiety, that there is some anxiety going on. I said, “Okay.” So I sat there and kept rubbing his back. We talked a little bit more, again, choosing my words very slowly. And I turn it on, and I just leave it on, and I let it slide down my leg, and it just bumps his knee. 

As soon as it touches his knee, he grabs it and pulls it up onto his lap, and he’s just sitting there with it, and then I see him over the next 10 to 15 seconds start to relax far more deeply. And so there are two takeaways that is my hope for you today. Number one is having this perspective shift away from our primary focus or our focus really at all being on compliance to what is going on with this child right now. I also hope that you have a sense of building a toolbox that you can use for your child or the kids that you work with that can be tools. 

Now, is this vibrating neck pillow, which is also from Fun and Function, by the way, um, they gave us this, uh, as part of, as part of their sponsorship, which is awesome, um, and we certainly used it a lot at camp Is this going to be a magic fairy dust every time a child or even that child is starting to have really big emotions or a meltdown? Probably not. Probably not. Is it a tool that you can pull out of the toolbox that might sometimes be helpful? Absolutely. This vibration gets to deep proprioceptive input very, very quickly without having to move or go somewhere else. 

It can also, especially when on the neck, stimulate the vestibular system deep in the inner ear. Some kids will take vibrating toys and hold them up to their ear. I also love this, this little, uh, I always call them bugs, but it’s a handheld massager, and these are five bucks, uh, at Walmart, Target, uh, CVS stores. You can usually pick these up. It’s always something I have as an OT. Uh, many… We had multiples of these at camp, so often in circle time there were three or four kids at any given time holding one of these vibrating toys or while we were doing the craft. We would also use this neck pillow and put it around their waist or just sit it on their waist. Uh, there were lots of ways, uh, that we used that. 

So I also just wanna highlight that vibration can be very powerful way to improve regulation, and that’s because we’re activating that strong sensory input right there. Okay? Now, I wanna share one more example, uh, quickly in this episode, and that is, uh, you know, as I’m looking at demand avoidance, which has become such a hot topic, and understandably so. Uh, for those of you that aren’t sure what demand avoidance is, that is basically avoiding any demand. It can be a demand as simple as, “Oh my gosh, there’s a car coming, don’t run in the street,” and then the child runs in the street. 

It could be any request. “Hey, it’s time to go take a bath.” “No, I’m not taking a bath.” Okay, so all kids have some level of demand avoidance, right? They’re, they are trying to exercise their own independence. That’s part of growing up. There are times that they don’t wanna do things. Now, with children with autism, they’re, uh… some experts are theorizing that there is a profile where kids, some kids with autism are heavily avoiding demands to the point that it’s pervasive. And so you may have heard of pervasive demand avoidance, PDA. 

That is a profile, a theorized profile, and certainly see some aspect of this. Uh, we saw some aspect of this with most of the kids that had an autism diagnosis and actually some that didn’t as well at camp. But one– on one particular occasion during obstacle course, uh, we had a child take one of the elements from the, the obstacle course, and it on the surface looked like he was being a little mischievous. The other kids got upset because this beanbag that they were supposed to kind of move from one side to the other of the balance beam was now not there. 

And so, you know, the other kids are like, “Hey, he took the beanbag. Like, where is it?” He immediately starts to smile, and he puts it behind his back so that nobody can, can get it. So again, I have a choice in this moment to look at this as behavior which if I’m looking at it from just a behavior standpoint, I might be telling myself, “Okay, this child is not complying with the rules. He clearly knows that he’s not supposed to have this, but he’s doing it other way. He’s doing it anyways, and so there must be a punishment. There must be a consequence.” Or and this is, uh, I think, more challenging in this situation I have the opportunity to say, “What is going on with this child? Why is he taking this right now?” And so as I approach him and try to get the, the beanbag back, he is unwilling to give it to me in any capacity whatsoever, and he runs down the hall, which I’m right behind him. 

I have a doctoral OT student with me and another OT student from Duquesne University. They are excellent, and, you know, I’m a few feet away, and I’m like, “Yep, just kinda continue with the, the obstacle course. I’m gonna, I’m gonna help our friend here.” And so I… We’re in a safe space, I know he can’t really get anywhere, uh, but I realize that he needs a few minutes away from everybody to start to de-escalate. And so his dysregulation that I’m now seeing because he’s run down the hallway, so there’s some flight, which again, I can choose to look at behavior or I can choose to look at this through what his nervous system is showing me, and that he is probably experiencing some fight or flight. 

I’m not gonna lie, I’m getting pretty frustrated at this point, uh, because I, I wanna be doing the obstacle course. I love the obstacle course. There’s so many benefits, but I’m also using the self-talk. I’m saying, “Okay, what’s going on right now? What’s he doing?” And I’m having to very proactively use that. So he turns around and wants to run back towards the group, and I say, “Hey, let’s just, let’s just sit here for a minute and kind of calm down first.” And you know, he’s like, “I don’t wanna do that,” but he sits. 

He sits anyways, but he turns away from me, and I’m taking some deep breaths behind him to regulate. I’m probably like four feet away and deciding, “Okay, like, what are, what are we gonna do next?” as I’m taking these deep breaths, and from behind I see him wipe a tear from his face. And I immediately know that this child is hurting, that there is probably a challenge with social skills, that he is maybe wanting to interact with the other kids in some way and is not sure how to do that. 

But he does maybe have some sense that, “If I take this, I’m gonna get some attention,” and that attention is better than nothing, and maybe they would think it was funny. Maybe they would think it was a game. I’m not sure exactly what was going through his head, but I do know that the fact that he was shedding at least a tear was showing me that he was hurting inside And so giving him that space and that opportunity to have a minute instead of escalating into a battle between what’s going on just so that he is, quote unquote, compliant is a far better solution. So after that, we are, we are able to then transition back. We are able to replace the beanbag. He is able to rejoin the group and play in the obstacle course and move to the next activities throughout the day. It’s hard for me to imagine that if I had chosen– if I had not chosen that route, that we would have ended up in the same place. 

And so, uh, in these two stories, underneath the, quote-unquote, behavior, what I see is anxiety. I see a lack of connection and, uh, trying for connection And so my hope is that in listening to this, you feel somewhat encouraged that if you’re a parent and you’re dealing with a lot of meltdowns, emotional dysregulation, aggression, that I know that this is not all of the tools on exactly what to do in those moments 

But it’s so important to understand what might be going on. And when we change our perspective, it gives us a well to draw from for our own regulation and so that we can continue to guide and support that child. I am more convinced than ever, and gosh, do camp highlight this for me, that we must have a change of perspective from compliance to asking, “What does this child need? What are they communicating right now?” That does not mean that there are not boundaries. That does not mean that there are not routines and schedules, and that we are helping guide them towards a set of expectations for safe behavior, for safe actions, I should say. 

As an OT, behavior can be a fairly neutral term for me as just meaning our human actions. However, it can… behavior can be a very loaded term because it has become… it has, it has started to mean something because of the way that it has been used as something that’s kind of negative or bad. But any action is truly a behavior. So with all that being said, I’m so excited to, uh, meet back here with you next week. We’re gonna spend the next few weeks talking about autism, some different aspects of it that I don’t think we’re talking about enough. We’re gonna be diving deeper into this compliance versus, um needs. 

Uh, in our next episode, we’re gonna … We’re really gonna be honing in on when do we accept, uh, a child’s challenges, and then when do we decide to look at treatment? We’re also gonna be talking about the meltdown cycle and how that can become traumatic for a child. And then on August 19th, we are having an in-person deep dive on beyond behavior to helping kids with autism thrive. 

We’re gonna be looking at three core principles, current research, specific things that you can do as a parent, and we’re gonna get into the nitty-gritty so that you feel like you have an action plan moving forward. If you’re a therapist, as we head into the fall, that you have an action plan for your caseload, that you have fresh focus and direction that is evidence-based. I hope that you grab a seat in that. This is so long overdue, this workshop, and I am so excited to teach it. Of course, we will have the recording up ev- afterwards. That link is in the show note, all right, friends. Until then, bye for now.