Ep. 49: Understanding and Addressing Anxiety in Autism – Strategies for Special Education

This episode explores the intersection of autism and anxiety, highlighting how to identify and address anxiety-driven behaviors in students with autism through evidence-based, student-centered approaches.

✨ Key Takeaways
✔️ We address a recent Facebook group question about trichotillomania and anxiety.
✔️ Recognizing Anxiety in Autism: Girls with autism often exhibit higher levels of social anxiety due to heightened awareness of social differences.
✔️ The Evolution of ABA: 20 years ago, internal events like anxiety were often ignored in behavior analysis. Today, there's a stronger focus on addressing underlying causes.
✔️ Avoid the "Whack-a-Mole" Game: Replacing a behavior without addressing the root issue can lead to other problem behaviors emerging.
✔️ Strategies That Work: Combine behavioral interventions (like DRI) with approaches that reduce anxiety triggers and stressors.

📚 Resources and Ideas
✔️ Grab the free anxiety visuals here
✔️ See the Calm Corner visuals to support your classroom here
📘 Journal Articles – Some useful articles to check out:
     An update on anxiety in youth with autism spectrum disorders (reviews recent evidence regarding the characteristics, assessment, and treatment of anxiety in youth with Autism Spectrum Disorders)
     Anxiety in Autism Spectrum Disorder: Clinical Characteristics and the Role of the Family (examines anxiety disorders as common psychiatric comorbidities in children and adolescents with ASD)
🌐 Find Dana at High Ground Divorces

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Transcript

Episode 49 Understanding and Supporting Anxiety in Special Education

Intro: [00:00:00] Welcome to the Misfit Behaviorist Podcast. Join your hosts, Audra Jensen and Caitlin Beltran, here to bring you evidence based strategies with a student centered focus. Let's get started. 

Audra: Hey everybody. Welcome back to the Misfit Behaviorist Podcast. And we today are talking about anxiety. And in specific, a question that came through the Facebook group. I just got off Zoom with an old friend of mine who has dealt with this issue of anxiety and trichotillomania, tricho, trichosomethingmania, anyway, hair pulling. And so she and I had a nice little discussion about that. And one of the things I talked about with Dana is that 15, 20 years ago, when we were dealing this with her son, we were really about DRI, finding an incompatible behavior, finding them other things to do. And this listener viewer or whatever, she says, you know, they've tried beans in the putty and stuff like that. And that [00:01:00] absolutely is a piece of it, but what we weren't so good about then that we're definitely better at now is figuring out what that core reason is, the anxiety, what is causing it, what's the internal stuff, because, you know, 15 years ago, we were like, internal events, we don't want to deal with internal events, but we have to deal with internal events, so whether we're talking about stressors or anxiety or whatever, and over the years, tell me if you've seen this between maybe the boys and how they exhibit and the girls and how they exhibit autism. Most of the girls or the young women or the women that I've dealt with who have an autism diagnosis are either profoundly autistic, like level three plus or high anxiety, high social anxieties. And I was thinking about that over the years going, well, you know. The females in general, we tend to be more social creatures, right? So if you're a social creature by nature and you have autism in you too, which is a lot of just a social disorder, then you're like, well, now I [00:02:00] have anxieties about it because I'm more aware of my differences. And so I've seen it exhibit very profoundly with autism and anxiety more in girls than anything else. What have you seen over the years? 

Caitlin: I never thought about it that way, but I have seen, to your first point, similar in that the females that I've worked with are, I'm thinking of one in particular, and in fact, her autism was very severe, but she was verbal, but not in a very functional way. But she probably, to this day, had what I consider, the worst, highest, most severe case of anxiety that I've ever seen. And I would always tell my BCBA at the time, "I really think she has anxiety." This was going, like, 20 years ago, almost. And he would always tell me, like, "b b b b, like, we don't talk about anxiety." He would say, "we can address her anxiety related behaviors", which gave me, like, a good way to think about things. But in my mind, it was always, like, Okay, but no matter how you slice it, I'm seeing the anxiety, but he wouldn't "I [00:03:00] swear, we're not seeing the anxiety, we're seeing this behavior", which I understand over here, we only talk about those overt behaviors, and then here, we don't talk about anything at all, but I think there's like some shades of gray we were missing in the middle.

Audra: We have improved greatly in that, because if you deal with just the behaviors, and you do a DRI or something, you replace a behavior, and you haven't dealt with the core issue of why it's happening, then it's going to manifest itself somewhere else anyway. So you may get them to stop picking their eyebrows, but they're going to start picking somewhere else. They're going to find some place to do it, or they're going to exhibit it in another way, because that internal event that 20 years ago, we didn't want to talk about, is still there and it's still going to manifest itself. And so we've got to address, especially if it's a safety issue, if they're doing something to harm themselves or others, obviously we have to replace that behavior with something and get that that behavior under control. But we also do have to or we talk about trauma or we talk about stressors, we're talking about anxieties. What [00:04:00] can we do prevent that behavior from happening in the first place or to mitigate? We have to address both of those those tiers. 

Caitlin: Yeah. And I think to your point about the kind of whack a mole game we all play. I think we thought we were doing that, addressing the root of that, but what we weren't doing was looking for anything beyond, like, I don't remember having any conversations about the research in anxiety treatment or things like that. I worked at a fantastic school. We were always doing the best of the best, the most recent clinical applications of research based treatments for autism. But again, we weren't tapping into anything on that other side of it, which I think now kind of like that shift for me into branching into the public school and learning so much more about anxiety and other disabilities and circling back and being able to apply that even with my learners with severe autism has taught me so much perspective and I know for me specifically I certainly just wasn't as sensitive to it back then because I was never trained to be so.

Audra: So when I think about autism, I [00:05:00] think about anxiety in the learners, and I've seen it kind of manifest itself in different ways. So tell me if you've seen this or if I'm missing anything. Definitely self harming behaviors, whether it's hair pulling, skin picking, head banging. I mean, I've seen a gamut of different self harming behaviors or harming others behaviors, which can also come from that. I've seen destruction of property, excessive tinkering, coping through manipulating things. I've definitely seen that. And I've seen verbal responses, so echolalia, strong echolalia that kind of perseverates everything that they're doing, increased stimming through stress. Those are kind of the three areas that I've seen anxiety exhibit itself in the learners that I've worked with. Have you seen other things that I'm missing? 

Caitlin: No, I've seen all of those. I would always refer to it as like those OCD like behaviors, not being a doctor, not wanting to add a label or anything. But what kind of global catch all to describe whether it was like a verbal stim or like a behavioral thing that they had to do had a [00:06:00] learner who would have to write his name in a certain way and if you didn't, if you interrupted that chain of like the tail on the end of the Y or something, it would cause that the property destruction or the self harm or something like that.

Audra: And I asked Dana, her son's now 26, and is she able, now that he's older and can manage things as well and can verbalize what's going on, and she's now able to ask him when she starts to see behaviors, you know, how are you feeling, what are you feeling, and has she seen there's like a pattern to what usually causes the behaviors, and she says it's, yeah, it's usually anything that's open ended, so, he doesn't understand what's expected of him in a certain situation or how long something's going to take. Or, you know, it's just that unknown stuff that kind of triggers, those behaviors and that's his way of coping with it. And I'm like, yeah, that's actually, even though Isaak doesn't go into those behaviors that we're discussing, those are definitely the same triggers that I see for him too. The same things, the unknowns, the not knowing the [00:07:00] expectation, not knowing when something's going to be done. So just kind of those preventative measures that we can do as teachers is making sure we're front loading so much that we can for those students, especially those high anxiety students, letting them know what's expected of them, when they're going to be doing things, when the thing's going to be done, what the expectation of them is, how are they going to mitigate if they're feeling uncomfortable, and then always being able to ask them or observe their behaviors that may indicate, you know, that behavior is communication. Those, we get to know our students really well. And so we can see those behaviors like, okay, their, their anxiety is increasing. What can I do to stop it from getting worse right here? 

Caitlin: Yes, a hundred percent. And I was so glad you ended with that phrase because I think it all comes back to obviously just knowing our learner and choosing the right method for them. Because when we're talking about preparing someone for an event versus pulling some of that research and those things we know from clinical [00:08:00] anxiety treatments, I know with myself or like with my own son, for example, like I'll always try to prep him. I'm like, all right, we're going here. These people will be there. This is what it will be. But I noticed there's a fine line between preparing and then like, okay, don't forget we have that thing later, don't be nervous, because there's gonna be a lot of people there, and anyone with anxiety will tell you, just over and over talking, but over rehearsing, over preparing, like, too much of a good thing is not a good thing. And so sometimes, finding that sweet spot of preparing and rehearsing and roleplaying, and then also, there's times where, if I have a stressful situation coming up, somebody talking about it over and over in my face literally does not help and in fact does the opposite. So knowing when to like walk away, change the subject, go to a coping skill, find something preferred to do. Like all those little things that just come with knowing your learner and what works best in the moment. 

Audra: Yeah, that's a really good point. Too much of a good thing is not a good thing. 

Caitlin: I was at a workshop once and he was like, you know, we talk about preparing our kids for transitions all the time. And he [00:09:00] was very big on like, isolating is it a transition issue? Do they not know what's coming or do they not like what's coming? For what's coming, you need to be told what's coming, right? Like, if someone's like, we're going to go to the car soon and you're like, huh, where are we going? Like, we're going to go to the dentist. But if you know you're going to the dentist and you don't like going to the dentist, then saying, don't forget, dentist, five minutes, two minute warning, dentist, 30 seconds.

Audra: Such a great point 

Caitlin: So unhelpful and that really was like a light bulb to me for again school, my own life, my own child rearing experience and just preparing for transitions or over preparing.

Audra: So good that's what we want to talk about anxiety today and reiterating the importance of addressing those internal issues And those external behaviors as well is that we really got to deal with both of them. And just one little plug always to collaborate with your families. So if you have a student who has high anxiety or is exhibiting behaviors or you're concerned about, make sure you're in regular contact [00:10:00] with that family so that everybody's working on the same page. 

Caitlin: And also just to add to that, asking families if they're comfortable, if they are working with a treating doctor, if they're comfortable with you giving consent for you to speak to that doctor directly. I know for me that's helped a ton of our students when we have that great collaboration with the family, the doctor, and if the family is working with a doctor anyway, a lot of times you can be that bridge again with their consent, of course, and their permission, like the family, I've had a lot of families that are like, well, that all comes with autism, right? And sometimes it's like, no, that does not all come, some of the things you're describing as behavioral are in fact other things as well. And I think that can get lost in translation with that, like once a year, once every six month doctor visit, and that's where being the specialist, the practitioner can help bridge that gap.

Audra: So this is my friend Dana. Dana, you and I have been friends since we were 11 years old, which means over 40 years. We got this, we got this [00:11:00] question in our Facebook group and I thought, you know what? I know somebody to find out her perspective on it. So the question was, "I have a student that is pulling his hair out. It just started this year. Mom shaved his head, but now he's pulling out his eyebrows and eyelashes. It's delicious. Not sure why the change. Mom also mentioned that he has destroyed three TVs and two cell phones at home. He's not aggressive, but is destructive. Likes to take things apart. Will work on the bolts under his desk until the top falls off. We have started with some heavy putty with beads and that seems to help some. It at least deters him from picking his hair. So where do I start?" And then he is 12 years old, probably going through the changes. It's nonverbal, limited echolalia, very bright, loves to read. So I guess my question for you is, what role did anxiety play in your son's life? In particular, with hair pulling. And how did you handle it? 

Dana: The night before junior high was about to start. And before school started, they would have [00:12:00] everyone come to the school, depending on your last name and go get your pictures for your ASB and all this. So everybody went to bed and he was excited and we did a social story and we wake up and I'm like, wait, what are you? What happened to you? Are you okay? Are you sick? Do you have a fever? And I couldn't figure it out at first if something was really weird until I realized his eyelashes were gone and I'm like What is going on? I really had no idea I'd never seen anything like it. I'd never heard of anything like it. We go to the school, we get a picture. I have a picture of him holding his ASB. And I look at that sometimes and remember. So that night after everyone went to sleep, I did the thing you're never supposed to do. 

Audra: Googled. 

Dana: I Googled. I'd never done it before with any of the other issues. I have really good doctors. I know what to do. I googled, and really for the first time, I cried about his disabilities. It wasn't the autism, it wasn't the language disorder, it wasn't, you know, he presented in so many other ways that were hard and frustrating and lots of therapy, but this one, like, even talking about it right now, that was [00:13:00] huge for me, and it sounds a little bit shallow. And I remember that night, sitting in the office, reading these things, going, What in the heck? Why would someone do that? I can't help him. I can't fix it. Like, it's his eyelashes. I have to just wait. The thing that hit me the hardest, why I was so sad, is realizing how he must have felt on his insides. I didn't know that he felt like that. He didn't say anything else. 

Audra: He couldn't verbalize that feeling at that time.

Dana: He presented in the way that he was taught to present. 

Audra: Yeah, we do much better about teaching that now about verbalizing, teaching them to identify what they're feeling and verbalize it and be okay with however they're feeling and saying that which we didn't have so well down, you know, 15 or 20 years ago when you and I were going through this.

Dana: I had the most amazing neurologist who taught me all about it gave me this packet. He said, there's not a lot available on this. People don't like to talk about it, it's embarrassing, and so here's this packet, read this packet. And he would not medicate Kyle until Kyle took N- [00:14:00] acetylcysteine, it's an amino acid. I still don't totally know why, but it immediately worked. 

Audra: It got rid of the hair pulling?

Dana: Got rid of the hair pulling. And the neurologist, he said, he needs to do this first. People seem to notice that it works for about six months. I guess it helps sometimes with anxiety. 

Audra: What was the name of it again? 

Dana: NAC. N acetylcysteine. It's just an amino acid. You can buy it on Amazon. Thorne brand is great. It's strange, right? So it really did work. He still takes it. A thousand milligrams in the morning, a thousand milligrams at night, and it is prescribed. 

Audra: And the hair pulling went away with that. Has it come back at all? 

Dana: Yeah, yeah, it came back. So it went away for about six months. It took just a couple days to build up in his system. So you know how people sometimes you get things when you're low and like minerals or vitamins like I don't know that much about that, but I will say this made a big difference. He did end up adding Zoloft. If he goes off of that, he hair pulls. 

Audra: That's anxiety. 

Dana: So that's, that's what he said. Well back in the day when I looked [00:15:00] into it, they wouldn't really tie trichotillomania to anxiety. My kids also have Tourette's. That's all four of their main diagnosis is Tourette's. So, is it a tic? Is it anxiety? Is it OCD? My kids have those things. I think, though, that this question of your Facebook person, that they asked, I think, like, a teacher trying to take responsibility for that would be really hard. I think, everyone knows fidget things help, so there's things like putting band aids on your fingers. It's harder to pull. I tried it a couple times. I mean, that's actually one of the treatments, is you put band aids on your fingers. They should find some other way. But also, I felt like with Kyle, it would teach him that, like, he was wrong or bad. He really internalized that kind of thing. 

Audra: Yeah. I think about in this particular case, she's talking about possibly puberty, and that absolutely triggers all sorts of anxiety and other behaviors, and kids, we see all that all the time. So it doesn't surprise me that this is a new behavior that's starting now, [00:16:00] because all these other changes are happening internally too. How does Kyle deal with his anxiety today at 26? 

Dana: So today I'll be like, Hey, what's up? You pulling your eyelashes? You know, like if I noticed a thing, he's like only just a few over here, mom, just a few. He'll pace it out. But instead of being like, stop it, you can't do that, you know? I'm like, what's going on? 

Audra: Oh, that's great. 

Dana: That like, what's going on? What's up? What do you want to talk about? 

Audra: Is he able to? 

Dana: Yeah, yeah, sure. But he doesn't like to tie the two because he doesn't want to be wrong. 

Audra: Yeah, yeah. When you ask him what's wrong and he says what's wrong, do you see a pattern of what it usually is?

Dana: It's definitely something he doesn't know the end to. Something he doesn't know the answer to. Open ended stressor. So, like, I have an assignment. I know it has to happen at the end of next week, but I don't actually know how I'm gonna get there. And it might be even more vague than that. What time am I working on that? Or am I going to horseback riding still? Or do I have to change my therapy appointment? [00:17:00] It's usually like something that doesn't have a concrete solution. Sometimes there isn't a concrete solution. 

Audra: In life. 

Dana: In life, right? In general. Maybe it's things that would up anxiety for anyone anyway, but Kyle definitely likes to perform. You know, he wants to do good. He wants to be like his brothers. And if it's something that he could control, he will. And if he can't control it, he usually can find a way to control it. You know, usually there's something that he can't quite make work the way it's supposed to, or if someone's disappointed in him, that's big. 

Audra: Well, there's two things. There's what you're talking about is what we call differential reinforcement of incompatible behavior. So that's having them do something where they can't do the thing you want them to stop and that's the incompatible. That's why band aids or giving them a fidget or something. They can't do both at the same time. You can't have band aids on and pull your hair. You can't fidget and pull your hair. So that's the incompatible behavior thing. But you also aren't getting rid of the internal need to [00:18:00] do that, which is the other thing you have to address. So that's where you have to look at anxiety and all these things that, you know, 15 years ago, we didn't care so much about, you know, it's an internal event. Today we know trauma. We know anxiety, we know stressors, all these things impact and if you stop a behavior, but you don't deal with the internal need, it's going to exhibit itself somewhere else. You didn't get rid of the need, 

Dana: And he's watching you to see if you approve. And he knows now that he's disappointing you and now it's even worse.

Audra: Yep. And so he may do it that way as somebody else may just, well, if you take away this, I'm going to exhibit it over here and you're not going to like this one much better than that one because this is going to be worse. So you have to do both. You give them something to do that's incompatible with behavior, but you've got to address it internal stuff, whether it's medication or therapy or all of the above or eliminating any preventative measures . But that's kind of like the twofold thing where you and I did this 15, 20 years ago where we really only addressed the one [00:19:00] thing. 

Dana: I didn't know any better. 

Audra: And none of us did, you know, we just get better as a field. 

Dana: So, you know, anxiety in general, like from what I learned from him, spinning, jumping, rocking, bouncing, talking, you know, whatever the thing is that makes him feel better, but the neurologist teaching me, hey, this behavior is going to come out. The best you're going to do is control where and when and how it comes. 

Audra: Exactly. So Dana, I know that right now you are a domestic violence advocate and specialize with kids with special needs in particular. If somebody wants to find out more about you and what you do in the field of special education, special needs, where can they find you?

Dana: Well, my website is highgrounddivorces. com. So I specialize in custody battles and kids with special needs, mostly abuse survivors and victims. We find all across the country that there's a high percentage of special needs kids in the arena of divorce and custody. If you want to reach out and send me a note on there, tell me that you heard about me from [00:20:00] Audra and then, yeah, then we can do a free consultation that way.

Audra: If you'd like to comment on anything we've talked about or share some of your concerns or anything going on, if you have questions, find us in the Facebook group, the Misfit Behaviorists. And we will do our best to answer questions there or here or wherever we find a way to do it. 

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