How to Help Your Child Move Beyond Explosive Reactions and Crisis Mode

Episode Transcript

Dr. Nicole Beurkens 

Hi, everyone. Welcome to the show. I am Dr. Nicole, and on today’s episode, we are focusing on ways we can support kids and young adults who are in what we might call crisis mode. Maybe they are struggling with extreme behaviors, explosive reactions, extreme overwhelm, and anxiety. They are not able to move forward in their lives as a result. And if you are parenting or working with someone in crisis, no doubt, you are feeling overwhelmed, anxious, and are struggling as well. So we are going to talk today with Raun K. Kaufman, who has a wealth of experience on this topic. He’s going to help us frame these crisis behaviors as a neuro crash, and provide us with proactive and reactive strategies to support kids and young adults who are struggling. Before we get into all that, let me tell you a little bit about Raun. 

He is an autism thought leader and co-creator of the Autism Crisis Turnaround Protocol, author of the book Autism Breakthrough, the former CEO of Autism Treatment Center of America, and an international lecturer and graduate of the Ivy League’s Brown University with a degree in Biomedical Ethics. His articles have been featured in journals, he has been interviewed by national and international media, and in addition to his work with families and educators for almost 25 years, Raun brings his own personal history, which he is going to talk about with us about in just a moment. It’s such a thrill to have you here. Raun, welcome to the show.

Raun K. Kaufman 

Thank you, Nicole. I am super psyched to be here.

Dr. Nicole Beurkens 

So as we were talking before the show, it’s been at least a decade since we have seen each other in person, but we reconnected recently, and I am so excited about this new focus that you have in the work that you are doing, and just really cannot wait to share this with the audience today. But where I would love to start, actually, is with you talking about your personal story, because you really do have a pretty remarkable history, and I would love for you to share that with all of us.

Raun K. Kaufman 

Sure, and it’s so important to me because this doesn’t sort of just either an academic or career thing, although it is that too. For me. It’s so deeply personal. At a young age, I was diagnosed with what they said was severe autism, and when I say severe, I mean, I have no language, no eye contact, very much enveloped in my own world, my own space. I would do things rock back and forth and move my fingers in front of my eyes, which are familiar for people who know someone on the spectrum. One of the things I loved to do was take kitchen plates and put them on their edge on the floor and spin them over and over again. My parents were told I had an IQ below 30, really, it was harsh. And I think what had the biggest impact, and I think this is true, even today for a lot of parents is that the diagnosis tells you what’s going on, so great. But then there’s this prognosis, which I always say is somebody’s guess about the future, right? My parents were told I would never have friends. I mean, I would never even prefer people over objects, and so I would never be going to any kind of regular school or living on my own or getting married or anything, any of these kinds of things that a lot of us take for granted when we first have kids. And my parents did something super amazing in the face of this, which is they took me home, they developed their own very much home-based child-centered kind of program. They call it the Son-Rise program, and they worked with me for a little over three years. And I really blossomed and grew in 1000 different ways. I am this guy talking to you. But I went on to do those things that you said — I feel funny saying this, but I know it’s important to some people. So I’ll say it. Yes, I am married, I have a wonderful wife named Dilma, she is a total rock star and the best human being I have ever met. So I am super happy about that. But I also just would say that if you are a parent of a loved one who has special challenges going through something, I have been where your loved one is so I know what’s going on here. I also really get that your loved one on the spectrum is having other difficulties. They are not the problem. And even I would say their autism or other challenges aren’t really the problem either. Those might be challenges but if someone’s going through a crisis or a difficulty, what you were saying was a neuro crash, it’s not because of the person and their “misbehavior”, and it’s not even because they are on the spectrum or have another challenge. It’s a different factor, which I hope we can talk about. But I feel this very, very personally in my bones. Do you know what I mean?

Dr. Nicole Beurkens 

You do because you lived it and you have lived it from the personal side of being the person with challenges, but then also you have worked so extensively with so many families, with so many professionals, and so you are really attuned to their needs and what’s going on for them and the challenges. So I think you just bring such a unique sort of 360 views of this.

Raun K. Kaufman 

Thanks. Thank you. Yeah, I will just say a quick comment on that is that yeah, I have gotten a chance to work with so many families, and I really seen what these — not just my parents who helped me with my life, but what parents are capable of when they either have the right tools, they aren’t being constantly thwarted, and they have this chance to actually help their person who has the challenges. It’s pretty amazing what their kids can do when they have a parent like that. So I feel like I have seen it like you said, kind of from 360, from all different angles of what’s possible.

Dr. Nicole Beurkens 

Yeah. And unfortunately, our systems are still so set up to disenfranchise parents and families. And that is the standard and what is still recommended widely for treatment and intervention for kids when they get these kinds of diagnoses — which is a whole other show that you and I could do, but really just so devastating. So it flies in the face of what we know really works and takes parents out of the equation, basically saying: “The prognosis for this is really bad, you don’t know what you are doing. You need to turn your kid over to other people for x bazillion hours a week and let them do something.” And it’s so devastating not only for the parents and the families but also for the child.

Raun K. Kaufman 

Yeah, nobody wins in that equation. You are so right. Even today, it’s gotten a little better, but I still hear so many parents who get told, “Well you are just the mom”, or “You are just the dad” or “You are the parent. So you are too emotional. I understand you feel that way, but this is the way it really is.” And so there’s just a constantly little denigrating “move to the side” kind of message. I don’t even know if people are intentionally doing that. My hunch is that they are not, they are trying to do the best they can, but the way they are communicating is super disempowering like you were saying, to parents.

Dr. Nicole Beurkens 

Yeah, and I know the core of your work is really about helping parents and caregivers understand really what’s going on, because as you said, the surface of what we think we know is going on, okay, my child has this label or this behavior, but you are really about, let’s look deeper at what’s actually happening here because that completely shifts the way that we relate to the person and the way that we support them. Right?

Raun K. Kaufman 

It really does, Nicole. Actually, it’s funny you should say that, because one of the things that come up in conversation a lot when I am with people is this idea of, hey, everyone’s coming at this from the outside. They are coming at it from outside the child’s — I don’t want to say, everyone, of course, many people, let’s just say are coming at it from the outside, and they are sort of looking in. They are trying. Their intent is of course to help the child, to help the family. But they are looking at it as a neurotypical person who might gaze upon this person in need of help and change, right? And so they are saying, “Oh, well, okay, how do we stop this behavior that we don’t like? How do we change this thing? How do we get the person to act differently? How do we get the person to do the appropriate thing?”, but the problem is, and I feel really strongly about this is, look, it’s so important if we can come at this from the inside of it. Okay, so what is this person on the spectrum’s actual day-to-day lived experience like for them? What does it feel like for them when someone says no or someone says yes, or they are overstimulated? What does that actually feel like? Why do they feel the need to do what they are doing? That’s a big — instead of “How do we change what they are doing?” They are doing what they are doing for a reason. Why do they feel that need? And then for me, the third one is this inside question of, “Okay, so how do we help this person on the spectrum or with other challenges? How do we help that person to feel a sense of safety, feel at ease, feel a sense of trust and not be in fight or flight survival mode? How do we do that? Give them that experience?” So I feel you are right on the money there with the difference between coming at it from the inside and looking at it on the outside.

Dr. Nicole Beurkens 

Totally. And to go beyond that, I hear a lot of behaviorists, behavior specialists who are like, “No, we are looking at the meaning of the behavior. It’s avoidance.” No, we have to go even deeper than that. We are not just talking about those surface-level things. We are talking about what the actual internal experience of the person is. And so I am so glad that you…

Raun K. Kaufman 

Yes Oh, my gosh, Nicole, I am so just so glad you said that because you are right. It’s avoidance, right. But there’s something, there’s a reason why that’s happening, right? Why are they avoiding something, right?

Dr. Nicole Beurkens 

Right. It’s just well time for us to get beyond those archaic ways of looking at it. So I think this is really what you are talking about when you say, and you mentioned it a few minutes ago, we are blaming the wrong thing. Share a little bit more by what you mean about that.

Raun K. Kaufman 

Oh, well, yes, this is another thing. And specifically, when I say we are blaming the wrong thing, I am referring to when our loved ones — and I say loved ones because I don’t want to keep saying “kids”, because truly, we had a bunch of people in our last program, most of them were parents of 20’s and 30-year-olds, although we had parents of a 7 and an 11-year-old as well, of course. But yeah, what I feel happens here is if our loved ones are going through a crisis, which — if I can, can I back up a little and sort of define that a little bit? What I see a crisis as, and my colleague, Kate C. Wilde, she has authored multiple books, and we have been working together for a long time. We spent a year and a half kind of developing this ACT approach, Autism Crisis Turnaround. We are thinking of this idea of, okay, what most people are doing when they have loved ones, and periodically, at different points, that loved one might go through a crisis — Now people have different definitions for crises, and I am not trying to enforce my definition, but in terms of what we are trying to aim at to help people with, it’s a lot of the things you mentioned the beginning of our talk, which is like they might have someone who is having explosive behaviors or hitting or screaming, or if they are more verbal, they might be swearing, or say “I hate you, and I hope you die,” or all these kinds of things, which I never take personally, but I know some people do. 

 

There’s that kind of thing, then there’s going through transitions like puberty or the death of a loved one, or the dissolution of a friendship or a relationship. And then sometimes it’s manifest, not in an explosive behavior, but in what you mentioned, which is just really intense feelings of anxiety and misery, and it kind of just breaks your heart and you want to help this person not be in that space. So that’s what I am talking about when I say crisis. But what a crisis actually is, in my view, is the kind of repeated neuro crashes that are causing upheaval and disruption in life. And then if I go into what’s a neuro crash, I would say it’s when the imposed situation — I’m starting to define all this, but the imposed situation is just the environment or circumstance that a person’s exposed to, usually without their say. So then, a neuro crash is when the imposed situation overwhelms that person’s brain so that their coping mechanisms shut down. And I just think this is so important because the person with these challenges is already doing a bunch of really smart self-regulation and coping mechanisms.

Oftentimes, those are actively thwarted by the people trying to help them. “Oh, don’t do that, it looks funny,” or “We are sitting at circle time now, so don’t do that.” And really, these kinds of coping mechanisms are the only thing standing in between this person and a neuro crash. But even if they are allowed to do these coping things, which is great, I support that, even still, these imposed situations, these buildup of different things that are happening in their environment and to them throughout the day can really build up and then cause this situation where even the coping mechanism isn’t powerful enough to ward that off, and the brain starts to short circuit a bit, that’s why I am calling it a neuro crash. And basically, then you get these sort of explosive or big things happening. Does that make sense?

Dr. Nicole Beurkens 

It makes perfect sense, and it also explains why so much of the ways that these things are commonly managed are really ineffective because a lot of the assumption with dealing with these behaviors is that the person is totally making a decision to do this, and what you are really spotlighting here is that no, these behaviors are simply a response to processing circuits in the brain being totally overwhelmed neurologically, they are not able to manage and the behavior that you are seeing is the outgrowth of that. It’s not like they are making a choice to be — You know what? I really want to aggravate everyone, and I really want to make everyone’s life miserable, and I really want to make a scene and have everybody staring at me right now, so I am going to scream and throw chairs”, right? So I think what you are saying is so important for people to hear and understand. It’s a totally different thing that’s going on at a neurological level.

Raun K. Kaufman 

Yes. And oh my gosh, I can’t even tell you how it warms my soul to hear you say this, because it really is. People treat it off or at least talk about it as if it’s exactly that: “what if I break that window?”, right? And these are not thoughts through choices and behavior, right?

There’s something — exactly what you said: There’s something happening in the brain. And by the way, the thing that happened in the brain also isn’t that person’s fault. And also, and this is why I say we are blaming the wrong thing too, it’s not only not the person’s fault, but even the situation itself, let’s say an Autism Spectrum challenge, people talk about — Well, this is natural, I mean, if you have someone on the autism spectrum, you are going to have this stuff. But actually, autism isn’t causing that. It’s actually the clash between autism, which isn’t causing anything like that, and then these outside imposed situations that are overloading the brain and causing all sorts of problems. the two biggest ones, by the way, the two biggest ones that I think if we are going to blame the “right thing”, the two biggest things that I feel like are factors here — two to three, the two biggest would be building sensory overload, and then also, because our loved ones often have a heightened need for predictability and control, which we all have, but they might have it more, then that’s being continuously disrupted throughout the day. Again, no one is trying to be mean to these people, but oftentimes, their control, their predictability, and their autonomy are taken away in service to other things. And so both of those things are building up. One of the things I say a lot to people because they’ll go — I just had someone tell me this: “My son really flips out almost whenever his younger brother says almost anything, especially if he’s whining or crying, but sometimes even when he’s just talking.” So they make a direct one-to-one. So it’s something about this younger brother’s voice or something else. But actually, what I try to tell this person is it’s not one thing, it’s all the things. So yes, that may be the approximate trigger. Okay, you are seeing that happen. But actually, I would argue that if you had a lot less of this other stuff throughout the day, his ability to tolerate his younger brother’s voice might be significantly different. It might really increase, it might feel really different for him. And so one of the analogies I use for this is it is like your loved one that has a cup. Your brain is almost like this glass, and we are pouring water into it all day. And it’s okay to have some water in it, but that water is different times when their control is challenged, different times when there’s sensory stuff going on in their environment. They can take some of that, but what happens is eventually it’s going to fill up and when it overflows, that’s when you get a neuro crash. And that’s why it’s not one thing, it’s one of the drops of water. It’s all the water being poured in. So if we can pour in less water, or even better, maybe take out some water, then even the brother talking or this other thing doesn’t have to always be the trigger. Right? And so I sort of see it this way. It’s like we are blaming someone who is in a really hot room for clamoring to get out instead of thinking “Hey, it’s too hot in this room.” But we are blaming someone who’s scratching, why are they scratching? Instead of, “Hey, their bed is filled with poison ivy” Yeah, that’s why they are scratching, right? It’s not a behavior that they are doing to bug you right? So yes, if we can just sort of blame the correct thing, number one, it takes a bunch of pressure off people, but it also yields a solution to this. And one last thing I’ll just say is that this other thing I see — I know, Nicole, you will resonate, with your background, you will resonate with this, which is there’s just this huge trust deficit that’s been built, that builds up because of the different way that our loved ones can often relate and communicate. People aren’t meeting them where they are, and so what ends up happening is a trust deficit on the part of the person who’s on the spectrum, or who has another challenge. So then, basically, what occurs from that is when they start to move toward a crisis, they start to move toward a neuro crash, we call it hitting their sensory wall or their control wall when they are sort of hitting their limit of what they can take, then, of course, the best people to meet them there to try and help them might be their parents or a really good teacher or instructor, a really good OT, right? They are the best people for it, but they are going to be met with resistance oftentimes because there’s already this trust deficit, where the person who is challenged is seeing this person as a disrupter and a thwarter even though they are not, they are coming from love. But now, the very person who can most be helpful is going to get met with resistance. So then it comes to “Okay, how can we address that too, this trust deficit so that they are going to be open to us when they most need our help? Does that make sense?

Dr. Nicole Beurkens 

It absolutely does. And unfortunately, a lot of times when kids do hit that wall, and they then go into a neuro crash, oftentimes if it’s at school or some other places, there isn’t even someone in the environment who they have ever really developed a thorough, solid foundation of trust with. I had that happen at a situation that should not have blown up at a school yesterday, but it did. And it was because this kid hit that wall, and was in what you are calling a neuro crash. And who did they send them to interact with him and deal with it? The security officer from the school who he had never met before, the vice principal who he had never met before, and some guidance counselor who he also had never met before. And it’s like where were the people who he had established at least some level of trust with? And then they wonder why it kids escalate and it takes so much longer to come out of it. So I think I am so glad you raised that because so much of that is our work to do as parents, as caregivers, as professionals around how do we become who we need to be so that they can trust us and we can develop that foundation of trust. And that’s our work. That’s not their work.

Raun K. Kaufman 

That’s our work. I love that. Oh my gosh, that’s so true. We have something called the ACT Live Rescue Course, it’s a live course we do on certain weekends throughout the year. So we talk about these seven main causes of crises, we kind of go through all of them. And one of them is being around someone who is agitated and hasn’t built up trust in exactly the way you are saying, but also is agitated and has an emotional agitation, which is, hey, it’s understandable. I am not going to fault someone for that. But what ends up happening is that’s another assaultive sensory experience for our loved ones. And so then we talk about: Okay, so that’s our part. What do we need to do? We have ways that we address it, I am sure you do, too. But what do we need to do to help you be in a place where you are at ease enough so that you are not triggering them, and you are not triggered by them, and you can help them feel at ease? And then you can move forward from there.

Dr. Nicole Beurkens 

Absolutely. And I think really what you are talking about — I want to get into those seven causes. I want people to hear about that or at least some of them. But what you are really talking about here is us all understanding that how we have tried to manage or proceed with kids or adults with these challenges is to force them to fit into what the world is. And it’s like, “You need to be able to do that.” And then there has not been nearly enough recognition of the disconnect between who they are, how their brains operate, and what their needs are, and what we call ”normal” school, community, or home environments. And we haven’t had any sort of appreciation for that, so it’s sort of been just trying to force this fit. And what we are seeing is more and more kids who are having these crashes and going into crisis, not because there’s something terribly wrong with them, not because this is something they are doing on purpose, not even because we are bad parents or bad teachers, but because we fundamentally don’t have a fit and aren’t working towards that fit between neurologically who these individuals are and how the world operates.

Raun K. Kaufman 

Yes. Oh, my gosh. I think of it as the clash between their unique way of experiencing things, and the imposed situations that we are insisting on. There’s a clash there. If we could just not have that clash, we can solve so much of what’s happening with these kinds of crises and neuro crashes. Absolutely.

Dr. Nicole Beurkens 

Yeah. So, so true. And to people who say ”Well, that’s not realistic. That’s not how the world works. they need to figure it out.” We could do again, a whole episode on that, but the reality is, how well is it working for your child or your loved one or your student or whoever, to continue forcing this and then breaking down and not being able to function? That clearly isn’t workable, either.

Raun K. Kaufman 

It’s really not workable and people talk about — I love that you just said that because I hear that all the time “But the world, but the world, but they have to adjust to the world!”, right? And this world that you are talking about, even beyond just autism or special needs, is a world. I really feel, no joke — so you know how there are all these videos now of a flight attendant politely asking someone to put on a mask? I am not going to get political, don’t worry, but you have someone to put on a mask and that person loses their mind, right? And it circulates around the internet and everyone’s is like looking at the overreaction, and that’s a big one, overreaction, and what I feel is we are experiencing the first mass neuro crashing happening. So people think it’s because the flight attendant asked this person to put it on. I am like that was the trigger, yes. But there was a whole day or week or month of stuff that just built up to that. That person was an inch away from their wall, and then when you asked them to put on their mask, you basically took some control from them on the plane. I want them to wear a mask on the plane, but I am having this sense of —And not just in planes, right? There are people flipping out in Walmart, on every side of it, this isn’t just one type of person doing this, right? What I am saying is I really feel people that are dubbed neurotypical are having tons of these neuro crashes. So this sort of real-world that everyone has to adjust to, ain’t nobody adjusting to it. There are really big problems happening right now that aren’t being addressed.

Dr. Nicole Beurkens 

Oh, man, that is so true. We are collectively in a worldwide neuro crash epidemic here, and really, that’s what I have been saying to families and even my professional colleagues and to patients over the last, well now, 20 months of this whole thing. This is really a normal response to a totally abnormal situation, and I think framing it in that way is just so important because it takes the focus off of “There’s something wrong with you”, or “There’s something wrong with me.” It’s like no, there’s something wrong with the situation. And let’s look at how we can deal with that differently.

Raun K. Kaufman 

Could we change that in such a way that it’s not a constant trigger for people?

Dr. Nicole Beurkens 

That’s right. That’s right. Yeah. So let’s talk a little bit about — you shared that one of these sort of causes that you feel is behind these neuro crashes, you talked about sensory overwhelm, I think you have mentioned a couple of them. But let’s have you just share as many as you are open to sharing just so that parents and caregivers can just get an idea of what are some of the things that really can lead to this?

Raun K. Kaufman 

Yes, I can actually whip through all seven pretty quickly, but if I could, just as a lead into that, I could make just this one point, which is: Being aware of this kind of stuff can be so helpful, because we have this other term we use in the ACT protocol that we call, we want to look for SOS, which stands for Signals Of Stress. And we actually even named the skill of getting good at that, because actually, I don’t feel a lot of people have been helped to get good at that, so people are missing a lot of stuff. But we call that skill Socioception, which is the ability to really detect SOS, so that you can really detect your loved ones’ stress level and their boundaries way before a neuro crash is going to happen, when they are 10 feet from the wall and not just when they are an inch from the wall. So I just want to say because this is so important. There are obvious ones that everyone sees, these are the ones that our loved ones do right before they hit the wall, right? They might be covering their ears, so people are like, “Oh, something’s wrong.” But there are a bunch of more subtle ones that happen way earlier, that is so important to start to get good at perceiving. That can be anything from literally clenching of the jaw muscle. I see a lot of kids making fists. Not a fist to hit, just a fist at their sides. They are trying so hard that they are actually — and this is the thing: Everyone blames them for the neuro crash. They are trying so hard not to have the neuro crash. Do you think they want to have the neuro crash because you think that’s some fun, pleasant experience? Of course it isn’t, right? They are suffering as much as the people on the other side of it, right? So they are trying really hard not to have it, and that’s why they are not having it every second, right? They are trying really hard not to have it, and so they are doing all these things. And we can be aware of these signals, we can be aware of changes in breathing. Again, we are not really trying to be observant in that way. I have people all the time saying “That was just out of the blue”, or “It was an overreaction” when actually, I guarantee you it’s not out of the blue, there are a bunch of signals. And it’s not an overreaction, because they are not really reacting to that thing you think they are reacting to. So the better we can get at perceiving all of that, we have a huge list, we have pages where we have people do checklists so they can really start to get good at it. And actually, first we have people do it on themselves. We have our own SOS too.

Dr. Nicole Beurkens 

People are notoriously bad at even being aware of that for themselves. So yeah, I love that: First tuning into our own experience. What are we noticing about our stress response? 

Raun K. Kaufman 

And it goes, again, we could have a whole one-hour conversation just on this because I am thinking of all the couples, neurotypical couples who aren’t seeing their loved ones SOS as there as they are building. There’s so much of this, I can talk about this all day. But anyway, in terms of our loved ones with challenges, they are having some SOSs that Kate and I have seen for years. We know exactly what these things look like. So we are trying to get people really good at seeing that. It doesn’t happen overnight, it takes a little bit of time. But if you can get good at that, you can address these seven things, which I can just whip through real quick.

So I’ll just say them really quick. So I mentioned one already, which is being around someone who is emotionally agitated. Number two is being pushed, and I don’t mean physically. Oh, I hope that’s not happening. But I mean, emotionally pushed. And there are three main ways that this happens. One is that the “no” isn’t respected. Someone’s saying “No, no, no.” “Yes, yes, yes”, we are saying. We are doing it anyway. Right? And even if they can’t verbalize “No”, usually they are expressing “No”, right? They are frowning, they are pushing us away. We know they mean “No”. Another is we are trying to get them to do something, like let’s say homework or sitting at the dinner table, because that’s what you are supposed to do is sit at the dinner table, and they don’t want to do it. So we are pushing them to do that. And then another, which I call the enemy of autism, and I think everyone will resonate with this, which is rushing. Oh my gosh, rushing is the worst thing you could do if you have someone with special needs. You don’t need me to tell you that. Anybody listening knows that. We see that everybody sees that because it brings in a lot of these problems, the agitation because I know how I am when I am rushing, I am a freak when I am rushing. Yeah. So anyway, that’s all just under being pushed. Then there is invasion of personal space, which is everything from unwanted, unfortunately, unwanted affection, when we try to hug and kiss our loved ones and they don’t want it, picking them up and moving them if they are smaller, and then another part of this same thing is taking their stuff. Don’t take their stuff. If they hold something in their hands or they have a favorite thing, and we are constantly pulling that out of their hands. So that’s another thing. Then there is sensory overload, which we have been talking about, but I just want to say that that is one thing I talked about a lot. We call it S4. It just basically means Super Sensitive Sensory Systems, which you will resonate with. And basically, all the different things that put a stressor on that that we might not be aware of. And then number five is unpredictability. And I am talking about our unpredictability. Think about it. We are indifferent moods each day. We say dinner’s at six, but then we work late one night, so dinner is at seven that night. Neurotypicals are known to lie sometimes. So there are all these different ways we are not super predictable, and then number six is blurry boundaries, which what I often see is a combination of way too many boundaries, and then inconsistent enforcement of that. So we always try to say you want way less boundaries, but you have to be 100% consistent with those few boundaries that you have. And then the last one is another term we have been using, which is what we call a bio storm, which is basically biological. It has the characteristics of a storm, meaning it’s super explosive, but it also passes. And that could be triggered by anything from something that was eaten to — I have had some dryer sheets cause that. All different kinds of things. Smells. This is going to be a little gross, but people think when you smell poop, that happens by magic. But actually, in order to smell poop, there are microparticles of poop in the air that you must smell. So I had one family where their loved one had a lot of neuro crashes on Fridays for some reason. They didn’t know why. We tracked it back and they were like “Oh, that’s the day the house gets cleaned.” So there’s just tons of microparticles now in the air from all these detergents and stuff that they are using. That makes it really hard for them to function. They are going to have more neuro crashes that day, absolutely. This is a combination of sensory overload, but I just talked to this mom, this was just a week ago. She had a 32-year-old, and every three meals a day for over a decade, there were giant meltdowns and neuro crashes. Every single time. Think about for both of them, it must be horrible living that. So she takes our live course. After that, she walks into the kitchen, she just closes her eyes without him there, and she realizes she can hear the hum of the refrigerator, and she can also smell all of the cleaning from the dishes that were done ages ago, but she can still smell it. And so she just starts to do something really simple. She just starts to have the meals in his bedroom instead. And literally nothing. No problems. No meltdowns, no neuro crashes. After over a decade of this. Three times a day, right? So now we have changed the imposed situation. We have now matched it. We are not dropping him into a situation three times a day, that is completely triggering for him and completely hurtful to his brain and his experience. And hey, he’s not going to have a neuro crash every second when you do that.

Dr. Nicole Beurkens 

It strikes me as you are talking through all of these — which is a great list by the way, love those seven. I think that’s so right on. It strikes me that this really involves us making a shift to getting curious and being willing to step outside of the realm of our own experience and perception, and perceiving things through the lens of our loved one. And so rarely do we really talk about that. And so rarely do people do that. It’s “Nope, this is what’s happening. This is my perception. I am not bothered by the kitchen. I don’t know what your problem is. Everyone else is just fine sitting here and eating”, right? And so it’s that getting curious and that being willing to say “There’s got to be a reason here. Let me set my own experience and perception aside and try to understand what your experience of this is.”

Raun K. Kaufman 

Yeah. I am feeling you big time, Nicole. And look, that’s hard for a lot of people. That’s not where everyone’s naturally coming from, and especially if they have someone in their life who has a lot of special challenges. They are often in crisis mode, they are trying to run around, put out fires or get this person to conform in a certain way. And so they are not seeing that, but what you just said is so crucial. Oh my gosh, so important.

Dr. Nicole Beurkens 

So I know we are going to have to wrap up here in a few minutes, but I want to share that I think this has just been such a great conversation, and you have given such an important shift for our listeners to make in how they think about this. I wonder if you could leave people with a tip or two. If somebody is thinking, “Okay, wow, I really I get this now. I have not understood this before, and I am going to start trying to be more aware and better understand what’s happening here.” Is there a starting point or tip that you would share with parents and caregivers around maybe how to make themselves a more trustworthy person? Or maybe it’s somewhere else that you start. Something that they could take and say, “I am really going to work at this”?

Raun K. Kaufman 

Yeah. I am so glad you asked. Sure, absolutely. So one of the things to note is actually before people go to the live course, they’ll can take — And if they buy this other thing I am about to say, it’s free if they take the course but they can buy it separately, but it’s basically just a little online almost a pre-course course. It’s called the Autism Crisis Lifeline, and it gives them — a lot of people don’t want to wait, let’s say, whatever, a month or even a week for this, so we want to give them some things to do. So I can think of some things from there, a couple of things. So we have these five turnaround tools, which are the main things we focus on helping people with. The first one is called use socioception. It’s all about getting good at recognizing the SOS’s that we were talking about. The second one is called a ceasefire, and it’s all about changing these control battles because these control battles are massively contributing to these neuro crashes. So a lot of people feel like “I can’t give” — because we advocate giving more control in a bunch of different ways, but a lot of people just aren’t ready for that as a first step. They just can’t get there. So we start with this idea of, “Okay, let’s eliminate some of the big battlefields first”. We call it eliminating the battlefield. So if you are always having the battle over them raiding the freezer and eating all the ice cream, even if there’s a gallon of it. Right. Okay, so we could not have ice cream in the house for a little while, right? Even if it’s the whole fridge, we could actually put a lock on the fridge. This way, we are not saying, “Hey, don’t touch that, Hey, I told you not to do that. Hey, give me that back.” And now I am going to tug of war with that. Just taking away the whole battlefield. There’s no field for us to have a battle on. That, I feel is important to go through. We have a checklist, but people can start this on their own, just looking through “Okay, what are the biggest things we have these battles over?” Can I actually just remove something? I had someone who was like “My kid is always writing on the walls”. Okay. Could we not have markers all over the place? Then you don’t have to grab the markers from them. There’s just nothing to write on the walls with. So hey, the problem is solved, right? So there’s that piece.

I just want to say one other thing. This is part of the very final, the fifth turnaround tool, which is something that we call nurture more, but it has to do with using these things. So I am sure Nicole, you are familiar with a very famous book about the five love languages, right? Of course, right? So everyone’s familiar with that. So what we did is this thing we call the five autism love languages, and there are things you do. You don’t do them during a neuro crash, that is not a time, but you do them in between the neuro crashes, all the times that we could be using to do what you just said, which is get rid of the trust deficit, build more trust there. One of the things I say a lot is that lots of people are helping our loved ones, but very few people are helping them in a way that feels like help to them. Lots of people are loving our loved ones, but very few are loving them and caring for them in a way that feels love and caring to them. So how can we express love and care to them in a way, in a language they can digest, in a way that feels that way? So it includes things, I’ll just give you some very quick examples, like interest in their interest. So instead of constantly trying to get them to move on from talking about airplanes, we need to become airplane fanatics. We need to get really into airplanes, right? So one is interested in their interests. Another is what we call immediate responsiveness. So very oftentimes, when they finally do put things together enough to really try and communicate with us, we are busy, we are this, “I’ll do it in a minute, I am going to cook dinner, first, I am going to do this,” it’s really important, again, unless there’s an emergency and you can’t, to try and be responsive to their actual reaching out as quickly as we can. There are obviously things like words of support, ways we can talk to them that are very supportive. There’s this too: We are often unaware of what our faces look like. Friendly face. But basically, it’s so important to have a friendly face. People talk about, I am going to just say on the spectrum, specifically, people talk about people on the spectrum, they say mindblindness, and they don’t understand other people, they don’t have empathy, right? I feel like when I am working with people on the spectrum, they are way better detectors of this stuff. I can act like I am in a good mood for my neurotypical friends, and if I am really paying attention to it, I can fool them, and they can think I am having a good day. I cannot do that with the people on the spectrum I work with. So it’s really important that all these little nonverbal ways that this stuff leaks out, we have to come back to putting ourselves in a place where we are having a friendly face, and all the little signals that tell us that we are either angry or accepting, that we are in a bad mood or a good, that we are dangerous, or we are safe. It’s really important to monitor and then put those on the surface so that our loved ones can feel safe. There’s a Dr. Stephen Porges, I don’t know if you have heard of him, that sort of safety. Really important. He said had this quote, which is that the feeling of safety is the therapy. It’s not some side thing that we have to get out of the way so that we can get to the business of — that is the therapy. That is so important. If our loved ones can really feel safe and at ease, not being fight or flight. That’s the key.

Dr. Nicole Beurkens 

I love that. And that really is all under our control because we can be in charge of being aware of and managing our own emotions and our responses to those emotions. That’s so powerful. I love this. I could talk to you for five more hours, and maybe we will need to have you back because this is such an incredible and helpful conversation. I do want to make sure that people know where they can find out more about the work that you are doing, particularly around ACT, The Autism Crisis Turnaround, and I would just say, I think that you would agree, but correct me if I am wrong: Even for people listening who are like “Well, my child doesn’t have a diagnosis of autism, but all of this sounds very much like my kid”, that that’s okay, right? The work that you are doing is applicable to lots of different kinds of people. But I want to make sure that they know where to go to get more info and also about the live class that you have coming up in a couple of weeks.

Raun K. Kaufman 

For sure. I’ll just give two quick things. So one is they can just go to autismcrisisturnaround.com. There’s a lot of information there. And then we have put together the ACTS Protocol. By the way, it is a protocol, not a program. So there are programs like RDI and the Son-Rise program that are good long-term developmental programs. This is only designed to — you learn it, you take two to three weeks to really implement it to get this kind of turnaround happens. So it’s compatible with anything that isn’t long term. But anyway, they can take the ACT Live Rescue Course. And basically, that’s an all-day Saturday and Sunday course, which happens over zoom. It’s super helpful and we have lots of Q&A. Kate and I teach that together. And basically, the next one that’s coming up, for people that are listening to this is November 13 and 14th. That’s a Saturday and Sunday. And they can actually go to the autismcrisisturnaround.com to register for it.

Dr. Nicole Beurkens 

Awesome. And that’s great. I want to encourage everybody to do that. And even on the website, you have got, as you mentioned, that free really helpful intro video, you have got lots of tools and things there as well. So I just really want to encourage people to go to the website and check out what you have got going there. Raun, thank you for spending the time with us today, first of all, but also more than that, just thank you for the really important incredible work that you are doing around these issues. It’s so needed and we are all just really blessed by the fact that you are willing to use your personal experience and your professional experience to do all of this work and to share it with us. So thank you so much.

Raun K. Kaufman 

Thank you so much, and right back at you. I know we haven’t talked in 10 years, but I have been following your work and I am in your corner 1,000%. I love what you are doing.

Dr. Nicole Beurkens 

Thank you so much. And thank you, as always, to all of you for being here, for listening. We will catch you back here next time.