Not An Island Podcast

Ep 14. Understanding Stimming | Breaking It Down

Todd and Amanda Johnson Season 1 Episode 14

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Join us on this episode of the Not an Island podcast where we unpack the intricate world of stimming behaviors, shedding light on why these actions are essential for individuals with autism. In this episode, we share the vital role stimming plays in self-regulation and emotional well-being, and why it’s crucial to approach these behaviors with understanding and acceptance.

Navigating stimming in public spaces comes with its own set of challenges. We discuss the importance of creating environments that accommodate these needs, such as quiet rooms in workplaces, and delve into the nuances of ABA therapy. How do autistic individuals balance their need for self-stimulation with societal expectations? We tackle these critical questions, exploring the fine line between necessary self-regulation and societal integration. This thoughtful conversation aims to foster greater empathy and inclusivity within our communities.

We offer practical strategies to support those with autism in managing their stimming behaviors positively. From sensory tools at home to public accommodations like sensory gyms, we provide actionable advice to help integrate these essential practices into everyday life. Highlighting the long-term benefits of stimming for focus and learning, we share inspiring examples, including notable figures, to illustrate how these behaviors continue into adulthood. Tune in for a compassionate and insightful discussion on stimming, and learn how to give grace and understanding to those navigating the complexities of autism.

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Speaker 1:

Hi and welcome to yet another episode of Not an Island podcast. We're on episode 14. We are the place, that little corner of the world where autism, family and faith meet. We're your hosts. I'm Todd, I'm Amanda and we have another fun episode for you. Yes, and today? What are we talking about?

Speaker 2:

Today we're talking about stimming.

Speaker 1:

Yeah, what is stimming?

Speaker 2:

Well, first I just want to say shout out to our good friend Victoria Hoy, who gave us this idea literally months ago and we're finally getting to it. But she wanted us to do an episode on stimming, so here we are.

Speaker 1:

Yeah, thank you, victoria, we love you. Yeah. So what is stimming for the people who may not know what stimming is?

Speaker 2:

So it's self-stimulatory behavior. We all do it to some degree. You might tap your foot, you might tap your fingers, you might wiggle a little.

Speaker 1:

Some people rub their hands on their legs.

Speaker 2:

Rub your hands on your legs, rub your hands together, yeah yeah, there's all kinds of different.

Speaker 1:

So stimming is actually a really common way that investigators know you're guilty when you're in trouble. You know, looking off to the side, that is actually a form of stimming. As weird as that sounds, stimming yeah, everyone does it.

Speaker 2:

Yes, but for children on the autism spectrum and adults and whoever on the autism spectrum, especially those with more severe autism, their stims are way less controllable. For them, it's something that like we may be doing something to comfort ourselves and we can stop, you know, but it's something for them, that it's like their brain is so overloaded and overwhelmed that it really it's needed and it should, in my opinion. It shouldn't be stopped unless it's causing danger to them or someone else.

Speaker 1:

Yeah, yeah, so stimming is when those kids flap their hands or when they cannot stop saying one thing over and over and over and over and over and over and over, and yeah. Like we might have some experience with the vocal stimming oh and over and yeah, like we, we might have some experience with the vocal stimming. Oh so stimming why? Why is stimming important?

Speaker 2:

well, I think it, like I just said, it's important for um for ezra, I know it's important for his regulation um, when he was young he would spin, just spin and spin and spin uncontrollably back and forth on his knees.

Speaker 2:

Yes, he'd rock and he would spin. And uh, I was like how is this child not getting dizzy? Like this is so wild that he can spin, like that? Some of you know exactly what I'm talking about right now. Um, they have whole like gadgets that like like a sit and spin type of thing, but on crack, you know, that just goes absolutely wild. Yes, and Ezra would love to get on the swing, you know, and spin. Yeah, and when he was starting in therapy, it was actually something they would use the spinning stem to help stimulate his brain so that he could focus. When they went to sit down to do something, one of his therapists his speech therapist had they went to sit down to do something. Um, one of his therapists his speech therapist had been in the therapy game for a while. She has a daughter with Down syndrome and shout out, you know who you are.

Speaker 2:

Oh, we love you. You guys changed our lives and you changed Ezra's life just point blank. Uh, but she'd have me go get the little office chair from Todd's desk and we'd put Ezra in it and he would spin and y'all I'm like I would. You'd watch his eyes.

Speaker 1:

How is he not seeing his breakfast a second time? Right, but he loves it.

Speaker 2:

And his eyes. Just it looks so strange to me but he was like visually stimming as he's spinning and it's, it's actually bringing life to him, you know, yeah.

Speaker 1:

Yeah, so stimming is important because it's stimming stands for stimulation. It stimulates the portions of the brain that um help calm someone, right? So you might be rubbing your hand on your leg when you're nervous, because you're trying to. Your brain is subconsciously trying to comfort you. The same thing for a child with autism or a child with special needs in general. It's not just autism that stimming is common in. There's other diagnoses, but stimming at its base is self-comfort. It's self-comfort and, like she said, children with autism have a hard time stopping.

Speaker 1:

So it can. It can make for awkward situations, it can make for some, uh, some hard days, but, um, so stimming, that's what it is. It's why it's important. What, uh? What do we do with stimming Like? What is? What does our stimming look like day to day?

Speaker 2:

So, uh, for Ezra, probably now his predominant stim is vocal stimming. He wakes up vocal stimming, he goes to sleep vocal stimming. Um, he's been doing it as long as he could talk, Even before there was language, it was noises in a sequence. He's been doing it as long as we can remember and it can be really, really difficult to get his attention because he's stuck in this loop. You know vocal stemming. I think I've talked about this on another episode, but he has phrases.

Speaker 1:

Everyone around us knows his phrases, knows different things and they change.

Speaker 2:

We get new ones ones that we're not so fond of, uh ones that are you know, youtube is gone.

Speaker 1:

Okay, anyway, youtube is gone. Bye, bye, youtube, no more. Uh, anyways, uh. But he, what are some of his vocal stems?

Speaker 2:

Todd, can you think of some? F is for frog, f is for frog.

Speaker 1:

F is for frog. You get frog. He's addicted to frogs right now. Yeah, frogs are the thing. They're the flavor of the week, so everything frog, yeah. But he'll say that to himself when we put him at bed at 8.30, he'll say F is for frog until about 11 at night.

Speaker 2:

Yes, the past two nights it's actually been the speckled frog song or the five little speckled frogs. And he has to go through them all.

Speaker 1:

So music honestly, for a lot of children is you know. Stimulatory yeah like nursery rhymes, things like that.

Speaker 2:

Yes, it's stimulatory behavior when there's a child with autism doing it over and over and over. When, for Ezra, his language came through repeating, and that's how it still is he learned to repeat things. So before he really had a lot of language he maybe even had the sounds or whatever to a nursery rhyme, but he did that over and over again. Or maybe it was a little line from Mickey Mouse that we heard you know a hundred times. So now he creates his own, like F is for frog. I've never heard you know and you get frog. We have no idea what that even is.

Speaker 1:

Yeah, but on the day-to-day. I mean, he could say that to us and we're like oh, as we're stemming, but he could say that to a family member who doesn't understand, or he might say it to a complete stranger and they may look at him like he's lost his marbles, or they may look at him like, oh yeah, f is for frog, but it can make for some fun days for sure.

Speaker 1:

If you're in an environment where maybe autism isn't so prevalent, I'll say, or there's not a big history of people who understand special needs it can, uh, it can. It can make for some eyes getting turned away because why is that kid being loud? Why are they not listening? Why do they have headphones on yelling? F is for frog, you know over and over, or you know um, there's just stem stem. Stems is what they're called. Stems are, they can be, they can be fun.

Speaker 2:

They can be fun Vocal stems yeah. And and they help him regulate and, like I said, sometimes even with the vocal stems, we have to make it stop, because it's it is. It's making him, you know, go and go into like a meltdown or something, sometimes like he's he works himself until he's you can't, you know, can't contain himself and for the most part we just let him f is for frog.

Speaker 1:

All day, every day, he just does his thing like at the end of the day, is it hurting anyone? Is it bothering anyone in our house when he does it at the house?

Speaker 2:

No, we don't care, it's so funny because he goes to public school. Obviously we're in summertime right now, but one of his vocal stems is it's quiet time.

Speaker 1:

Yeah, yeah.

Speaker 2:

And we know, you know, because he can't vocal stem all day at school, he's got to, you know, be quiet to be able to.

Speaker 1:

So let's talk about stimming in public, in society, and why that might be problematic, right? So I think of where maybe a 20-year-old might be yelling F is for frog at their workplace. That's not super acceptable.

Speaker 1:

It's not going to go over too well, yeah, yeah. So there are things like there's therapies out there ABA therapy, which a lot of people might be against, a lot of people are for for different reasons, but stimming is something that can be regulated Right, can be incorporated into our society, like there are workplaces now that that accept people for who they are, to the point where they will make a specific room for hey, if you're having a hard day, and you're needing to yeah, just like, go in there and do your thing, you know, have your quiet time Maybe.

Speaker 1:

maybe you know, whatever stemming needs to happen, you know, and so they, they, they try to help with that in a lot of ways.

Speaker 2:

Yeah, bring accommodations.

Speaker 1:

Yeah, in our society.

Speaker 2:

And it's such a, it's such a taboo topic, I think, right now, as far as you know, there being such a wide spectrum and it affects people and autism affects people in so many different ways. It affects people and autism affects people in so many different ways. And so the people, who are a lot of people, who are against ABA, may be higher functioning and you know they felt like they had to suppress those self-stimulant stuff, self-stimulatory behaviors, to the point that you know it caused harm to them and it's just that or that. You know that's how they feel about it is that they're constantly having to mask.

Speaker 2:

You know that's how they feel about it is that they're constantly having to mask, they're constantly having to suppress and then finally they're able to you know stim when they're in private, you know, or whatever, um, but I but I know, for for children like ours, who that's all they do all day long is stim, you know to some degree like for them to function in society some of that has to kind of calm, you know for our child, for our child to have a hope of having to be able to function in society, he has to learn how to regulate certain parts of his diagnosis and we, you know, we welcome him to STEM all day long here at the house.

Speaker 2:

We welcome it even in public if it's something that's not going to disrupt, you know, uh, yeah, I think where, where you were going with this topic is, there comes a point where it can become violent, or it can become harmful to them or to someone else, and that's when, um, you know, it becomes a problem in society.

Speaker 1:

Yeah, um, when she says violent, I even physical there's not just focal stimming, there's physical stimming, and a lot of times, like children with autism, they might not realize that there's someone next to them. That they're physically stimming and they might accidentally hurt them. Or, like our son, bless his heart. One of his stims is when Justice is doing something. Bless his heart One of his stems is when Justice is doing something.

Speaker 2:

He thinks he's being like silly and or like maybe like.

Speaker 1:

Justice likes it. He pats him on the head, but he does it really hard, yeah, and he gets in trouble a million times a day for hitting his brother in the head Right and that's a stem that we don't welcome you know, we're like hey man, you need to chill out that, you know.

Speaker 2:

That's involving someone else that you're hurting, which I don't think that's his intention to hurt him. I think that that's just a stim, yeah.

Speaker 1:

And that's it. At the end of the day, it's a stim, so we're trying to find ways to incorporate it.

Speaker 2:

Ie, hey, be gentle, be easy, you can still pat him on the head when he, when he lets you right but don't do it in a way that's going to hurt crossing his boundaries and harming him right and, at the same breath, he shouldn't be doing that to any other children right and he shouldn't do it to his brother when his brother doesn't want him to and that's super hard for ezra to differentiate, because if we allow certain things in in a context where maybe it is a little more appropriate, aka punching daddy then we don't know who we can and can't punch elsewhere. You know that.

Speaker 2:

You know they might wrestle around, but then he doesn't have the understanding that not every guy he meets wants to wrestle with him you know and it's we're learning as we go that there's certain things you know that we have to kind of nip in the bud because it can cause him to be misunderstood, one in a way that could get him in big trouble. You know what I mean, and we don't want him patting someone too hard on the head at school or hurting another kid.

Speaker 1:

We don't want him stimming when he's 18 years old and getting put in jail for assault because he just touched someone on the head and they didn't want to be touched and next thing you know, they're pressing charges.

Speaker 2:

And he's seven now, but he's not going to be seven forever, Right?

Speaker 1:

So yeah, I mean, there's reasons you want to mitigate things socially. There's reasons you want to work with children with autism socially to help them to be able to function in society, and that's what really. That's what aba therapy is for right, it got a bad rap through the years because of multiple things that happened, but uh, and we haven't had the chance to go through it yet we have ezra's never had aba therapy, so we have no expertise whatsoever in this we know people who work in the industry who are incredible and I really think they're giving their lives to these children in an incredible way.

Speaker 2:

I will say that so don't come for us if you hate ABA.

Speaker 1:

Like you know and you know. But for us, we see the utility to it, we see the use for it in society.

Speaker 2:

And all ABA now is positive reinforcement. It's very much more, from what I understand, a positive environment Cause that was a concern for us. It's like if there's any kind of negative, reinforcement no no, we're the ones who supply discipline, not, not a therapist.

Speaker 1:

Not someone else, right? So, um so, we talked about how, what it is, we talked about what our life is like with it we talked about how it can be a problem in public. Um, let's talk about, like how it, how it marks people with autism even as adults.

Speaker 2:

What do you mean?

Speaker 1:

so there are certain people, even celebrities, you can watch and know that I'm pretty sure that person might have autism, right, you look at and I'll even name one the way that Elon Musk looks at people, or even doesn't look at people when he's talking, the way his mannerisms are. A lot of that is stimulatory behavior. He's trying to, um, find ways to, um what's the word? Cope with the specific situation he's in which he's a master at that. Dude's ridiculously good at just being a business leader, much less being a human being. So he's a master at masking, really, and he's also a master at coping with situations, and I really applaud him for that.

Speaker 2:

But but it it it's not like to a certain degree for some people it's just not something they can control. So even if they're trying their hardest to control it, you see it come out a little bit. You know it's their way of. They're very uncomfortable in social situations. A lot of people with autism it's like nails on a chalkboard and they're doing their best to like sit there and appear, quote unquote, normal, um, and so little things come out.

Speaker 2:

You know little Sims come out because, because they need need that to comfort themselves or calm themselves.

Speaker 1:

For sure. So when you see someone in public, what I'm getting at is when you see someone in public and it looks like they might be doing something repetitively, that might be a little different than, socially, the norm Throat clearing is one that I like.

Speaker 2:

I know some of our friends that are adults on the spectrum and it's just a part of their like yeah, they're trying to calm themselves down.

Speaker 1:

So if you're in public and you see that, if you don't have a lot of experience with autism, maybe give those people some grace. Know that that might be something they genuinely can't help. That might be something that's just their way of not losing it.

Speaker 2:

I want to talk about some ways to help them stem in a positive way. So we talked about sensory rooms. Something that we've been big on is we have a sensory swing, we have right on bouncy balls, we have all the sensory things that help with that. Um, for sure, yeah, help regulate it, you know, because they have a safe space to spend their heart's desire or they have a space, safe space to bounce it out, you know, whatever they need and and we've talked about this on a previous episode but you know, ezra craves outside time, like he needs, like hard physical play, and that's, that's a stimulatory thing. A lot of times it's him swinging, or it's him riding a scooter in the same direction over and over again, you know, or whatever. It's those repetitive behaviors that are self-stimulatory. Um, but they're they, but they're in an environment where it actually is productive and it's helpful, or slamming his toy cars on the ground over and over.

Speaker 1:

That's not always fine. He breaks a lot of things, breaks a lot of toys.

Speaker 2:

Because of that. But yeah, can you think of any other things that could help?

Speaker 1:

Yeah, I mean if you live in a very populated area, odds are you're pretty close to a sensory gym. That's a big deal. Sensory gyms are a very open play, padded environment that has ADA compliant equipment for your kid with autism.

Speaker 2:

Yeah, they can crash in, because that lot of a lot of kids on the spectrum I know ours for sure he loves to crash into- things you know that that, just like you know it, makes him come alive. It's something he loves.

Speaker 1:

So sensory gyms is one. Like she said, sensory rooms. A lot of schools are starting to incorporate sensory rooms into their environment. Also, a lot of theme parks. We went to one in Branson, silver Dollar City. If you go to Silver Dollar City, you're watching this, you may not know this. Tell them your child has autism. They will give you the code to a room in the middle of the park.

Speaker 2:

That is dead silent. I mean quiet. They have a little sound machine. It's a calm down.

Speaker 1:

Yeah, and uh, it's, it's amazing. So a lot of theme parks are starting to go with that. So I mean there's tons of stuff out there in public.

Speaker 2:

Right, and at home. I mean people like the little poppets, you know, the fidget spinners, things that keep Ezra's hands busy because he is still stimming when he's doing those activities, but he's able to focus and pay attention. His hands may be distracted, but it's like it opens his ears and his mind to hear things.

Speaker 1:

It's a really big deal. It's like that kid back in high school or middle school when you were growing up that would not stop clicking their pen. They were probably stimming, they were doing that because they're trying to regulate their emotions so that they can pay attention. What you'll find is a lot of kids who are stimming. The moment they're stimming, they actually listen better than if they were not.

Speaker 2:

Right, and that's wild to think, but it's true, it is true.

Speaker 1:

Like when our kid is bouncing on his bouncy balls all through the house. You can tell him to do something and he'll do it.

Speaker 2:

Yeah, Actually, I'll pull out short words that he's learning to read and he's doing amazing. We'll pull out sight words. We'll pull out short words.

Speaker 2:

I'll pull out a learning activity while he's doing that and his engagement goes up 50 to 70% on what we're doing, and then if I try to get him to sit right here still at the table and pay attention to it, so it may be an avenue for learning for your children too, if you can help them. Stem in a way that is productive and, you know, is bringing life to them versus not, Because I think that's what we're getting at in most of everything that we're saying is, STEMs can be really productive and really good and they can be really bad and and it's you know, knowing which is which and helping them to regulate. You know properly, you know.

Speaker 1:

Yeah, yeah. So, um, ultimately, what we're talking about in this episode, like she said, is stems and how to just. I hope this episode gives you ideas on how to maybe find ways to incorporate stemming in a healthy way into your family, into your public environments, into the schools that your children go to, into the churches that your children go to. That is something that is vitally needed is churches to have a place for children to express their sensory needs. It's just not there for the most part, so we hope that this episode gives you that.

Speaker 2:

Yes, yes, and I'm sure if you're a viewer and you have autism yourself, you could have like giving. Given us so much more insight to what we're speaking about, you know, we know. We know self-stimulatory behavior from a neurotypical standpoint and we know it from from what we've learned from our son. But we don't know the ins and outs of how that feels, you know to get that release or any of those things, and so it'd be cool to interview somebody on this sometime. That'd be amazing.

Speaker 1:

Well, guys, that's it for this episode. We talked about stemming. Yes, well, guys, that's it for this episode. We talked about stemming.

Speaker 2:

Yes.

Speaker 1:

Listen, we are so glad to have you all here. Be sure to share these episodes with your friends, with people that you know who are affected by autism. We're a small growing channel. We just got started back not long ago running some episodes again.

Speaker 2:

So, guys, we need your help to help this channel grow and we need your help to advocate for these families affected by autism and I hope this was helpful and also maybe comforting in some way to know, like, oh, my child does that too, like I hope it was relatable to know that you know you're not alone out there with your child's self-stimulatory behaviors. It's a real thing and it's important for us to learn how to navigate it.

Speaker 1:

So yeah, for sure. Well, that's it for today's episode. I'm Todd.

Speaker 2:

I'm Amanda. Thanks for watching.

Speaker 1:

Thanks for watching. We're not an island podcast. Until next time Peace. We're not an island podcast until next time peace.

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