Interview between Speaker 1 (Meg Ferrell) and Speaker 2 (Amanda Diekman)
Episode 101B: Supporting Autistic Kids During Meltdowns
Meg:
Hey, podcast listeners! We are back with a bonus episode for you. This one is specifically for the families of Autistic kids that you support. And parents, we know you’re listening. This episode is truly for you. I don’t know if you know, but at Learn Play Thrive Parents, we’ve been creating content to reach families directly. And one of our favorite parent resources is Amanda’s free talk and paid parent course on how to support Autistic kids when they are in distress, meltdowns, shutdowns, and burnout. And she teaches families how to do this without overextending your own nervous system as a caregiver.
Amanda Diekman is an Autistic parent of Autistic kids who has really been there, and she handles this topic with incredible insight and tenderness. Our bonus episode for you today is the audio from Amanda’s free webinar she did for Learn Play Thrive Parents on ‘How to Support Autistic Kids During Meltdowns’. If you also want to hear the incredibly poignant question-and-answer session that came after this talk, you can access that in the video recording of this live talk at parents.learnplaythrive.com/meltdowns, and when you register, you get her free set of scripts for how she responds to other people when her kid is having a meltdown.
We have really exciting news. We could not be more excited to launch a caregiver community of support this fall. That includes access to Amanda’s course, ‘Supporting Autistic Kids in Distress’, two live discussion groups with Learn Play Thrive Parents Content Coordinator, Daniella Boyd, and a live question-and-answer session with Amanda Diekman. It starts in October. It’s enrolling now, so please be sure to have the families you support visit parents.learnplaythrive.com/community to get the details.
Here’s Amanda Diekman on how we can support Autistic kids during meltdowns.
Amanda:
Thank you so much. I am Amanda Diekman. I am a late-diagnosed Autistic mom of three Autistic kids who range from 8 to 12. And just to say that while the big banner headline of our talk here and of the course is for Autistic kids, I wanna say that the strategies that I’m gonna be teaching you both today and in the course apply to kids in distress across the spectrum. So, if you’re also thinking — and not just the Autistic spectrum, the human spectrum.
So, if you’re thinking, well, I only work with some Autistic kids, the rest of my kids are just other kids in distress, or you have multiple neurotypes in your family system, we also have a range of complex profiles. My kids couldn’t be more different from each other, and these approaches are much more about us and how we view them, how we react to them, and how we nurture their safety so that they can emerge into their full and best self.
So, my journey — a quick version — is that I was trained as a pastor, so I’m good at organizing community and casting visions of hope and helping people to heal and to grow. And when I had three kids under four, I was in such personal distress that I couldn’t show up for that work anymore. So, I stepped down from my pastoring and I devoted myself to full-time care for three kids who were all really struggling.
And we went through quite a few difficult years, including about an 18-month period when one of my kids went into Autistic burnout, which is something that I cover in a lot of detail in the course. And we can talk about some of that in the Q&A if those are topics that relate to meltdowns, because it’s a period of time when capacity decreases so dramatically that meltdowns are just inevitable.
The window of tolerance is something that we’ve talked about before. It’s that zone where a kid is okay enough to handle whatever is presented to them, where their body and their brain has enough flexibility to respond. And in burnout, it’s like a permanent narrowing of that window of tolerance. It doesn’t last forever, but it lasts a long time. So, it’s not just like, ‘Ooh, they’re having a hard day’. This is months and months of hard. So, definitely pertinent when we’re thinking about our Autistic kids as well, because oftentimes what might look on the outside like a kid who’s losing skills, who’s struggling socially, might at home come along with a lot of meltdowns and/or a shutdown, just kind of like a withdrawal into themselves. And that can be burnout. It can be a really significant and needing to be named reality in their life.
So, I wanna talk about one mindset shift and one more practical tool — although as I was telling my husband, I was like, oops. The practical tool is also a mindset shift. Darn. [Laughs] And if you all have questions about my personal story, I think I didn’t, like, draw the through line all the way through. We came out of burnout; we went back into burnout. We still have hard days, but on the whole, we have a lot of good days right now. And I’m not saying that because that’s where the story has to end. I know that hard times will come again, but I wanna name that I have the capacity right now to be in a season where I’m teaching, where I’m sharing, where my kids are leaving the house, where they don’t need my constant co-regulation and attention, and I am so grateful for that reality. I’m just so glad for the good days when they come and for being in a season of good. It’s just really rich.
So, if you’re here live and wanna share in the chat, if you were gonna name your season, whether you’re in the hard-hard, whether it’s burnout, if you’re in your own version of good days, tell me what that looks like. I can see the chat, so I’ll be able to see what you’re sharing. And if you are watching on the recording, take a minute and think about how you would name the season that you’re in, because the first shift that I wanna offer is a way from an idea that I find pervasive when we’re talking about struggling kids. And what I wanna do for you, it’s I wanna give you freedom from something that is not working.
So, I guess in that way, it’s not a mindset shift, it’s really a release of an expectation. And so, again, if you’re here live, feel free to put in the chat if this resonates that when your kid is struggling, the dominant thing that we are told to do as the adult, as the caregiver, as the teacher, as the aide, as the provider, as the grandparent is to ‘stay calm’. I cannot tell you how many times some kind of online teacher has popped up on my social media feed, or I’ve gotten a blog post, or I’ve sat through a webinar where essentially the big message is ‘Mom and Dad, stay calm’.
And it comes with all these variations like, ‘Don’t get pulled —’ I’m not gonna get the words right. This is part of my Autistic brain. I never, like, repeat things exactly the way that I heard them. But like, ‘Don’t get pulled into their storm’, ‘Bring them into your calm’, or ‘Calm is infectious’, which is something that, I think, one of the courses that you mentioned, I was like, oh, I love that phrase. Like, why can’t that be true? [Laughs]
And so, what I wanna talk about is, number one, how that makes us feel when we are bombarded with the message that we must remain calm. Number two, I wanna talk about why that likely doesn’t apply in the situations that we are facing. And then, three, I wanna give you an alternative that is actually a lot more doable, a lot more freeing, and a lot more aligned with what science is really telling us can happen in those moments. So, feel free to let me know if the tyranny of calm resonates with you. If you have felt, number one, why it isn’t working for us, that whole category, is because largely the idea that we must remain calm when our kids are in a meltdown, or a shutdown, or in burnout, when our kids are in distress, we have to remain calm — what that does is it makes us feel shame.
We feel shame when we can’t do that, when we feel anything besides calm. And here’s the reality. I have never felt calm as like a lived, embodied emotion. That has never been my lived experience when my kid is in deep distress. I’m gonna talk a little bit about the science and why that is so recommended, which is also key for why it doesn’t work for our kids. So, yes. Somebody is saying in the chat, “It feels like gaslighting.” Exactly. We’re gonna get into why that is in a slightly more technical lane. It makes us feel terrible when we are inevitably angry, frustrated, terrified. When we are overwhelmed, when we are shaking, when we are crying, when we can’t invite them into our calm because we have no calm to invite them into, and then we think, “I’m just a bad parent. If I could just remain calm, then all of this would be fine. It’s my fault.”
So, when you take an impossible expectation, layer shame on top of it, and then isolate parents, then there’s no way out. Because what shame says is: Don’t tell anyone. Keep this a secret. This is a problem with you. Hide it. And so, then we don’t even wanna tell people about what we’re really facing because deep down, way deep down, we think that we’re causing it. That if we were just better, then we would be out of this. I’m just gonna hold a minute for that reality. I have spent so many hours beating myself up for not staying calm, but I wanna tell you why it’s an impossible expectation.
So, it’s out there because there is good science to support the fact that calm is contagious. That one person who is deeply regulated, really fluid, flexible, and in touch with themselves can absolutely invite another person into that same state. It is — that is completely facts. The problem is, and so imagine this with me, imagine your kid is grumbling because it is five minutes until dinner and their tummy is empty and they are desperately hungry. And they’re, like, freaking out because they’re so hungry and there’s five more minutes left to go before dinner.
Now, that is a situation where your calm could absolutely be contagious, right? Like, imagine they’re just like grumbling, like, “I’m so hungry, it’s never gonna be here. I’m dying.” And you’re like, “You know what? I know that five minutes feels like a long time when you’re hungry, but is actually very survivable. We’re gonna get through this. Five minutes, the food will be ready. You’re gonna be feeling so much better.” Ha, calm is contagious, gorgeous. Like, invite them into that calm. That is actually doable.
What is not doable is when your kid is scanning the room for any item that can be turned into a weapon. You are frantically gathering your technology to tuck it anywhere that it won’t be destroyed while sending smaller, more vulnerable children behind locked doors, preparing yourself to receive whatever blow might come — and you’re telling yourself you’re supposed to remain calm? No. That’s not possible. In that moment, your nervous system is not able to access calm. You might feel terrified. You might feel alert. You might feel resigned. You might feel scared. But you’re not gonna feel calm. So, let’s just say that is not a thing for us. For the things that we face, calm is not real.
And trying to, number one, trying to be calm or force calm in that moment is almost always going to be impossible, which is going to give us a sense of shame. When we do feel something that looks like calm, it’s usually dissociation, which is a protective state that our body is going into. It’s a separation from self. It’s a going outside of ourself into something else so that we can manage our distress in the moment, which is why it is so difficult and invalidating. I’m thinking of a time where we had a public challenge at a park. A kid had a large branch and was swinging it around other kids who I didn’t know, growling, yelling.
It was very difficult, and my nervous system was in total overdrive. When it was all over and finally it was done, my friend who was there helping said, “Oh, my gosh, you are so calm. How do you do that? You’re amazing.” And I felt so unseen because I was anything but calm. That incident would take days for me to work out of my nervous system. I’m gonna have nightmares. I’m gonna have sweats. My hands are gonna shake. I’m never gonna be able to come to this park again and not think about that. That wasn’t calm, that was trauma response. I just dissociated for my own survival. I don’t want someone to look at me and think, “Wow, she’s superwoman.” I want someone to look at me and think, “Poor thing. What can I get you right now? Do you need something warm? Are you okay?”
So, trying to be calm is impossible. When we are calm, it’s actually a protective state that hurts us and we need to acknowledge that so that we can allow care for ourselves in. So, what’s the alternative? So, I wanna give you a possible alternative that is actually really liberating from all of the pressure that we put on ourselves to be something that we never are going to be. And that is that I invite you instead of being calm, I invite you simply to be present. Present to yourself, present to this moment, presence with maybe like a dash of dissociation because it is a helpful thing.
You don’t wanna be so, so present that you get flooded and overwhelmed. You wanna be present enough that you can stay with what’s happening and then have the confidence that you know how to integrate this experience later. So, that’s a tool that I have that we can offer alongside the handouts and things that Meg has, is something called the Wave Method. And I’m gonna walk through it really quickly right here ’cause just talking about this, you might be feeling some of those escalated and dissociated feelings just hearing me name this.
So, the first is the W. That’s to ‘Wake’ your system. So, I have in my hand a screw. I have this here on purpose. I like to keep a screw in my pocket because when I’m getting dissociated, if I use that tip of the screw to put pressure on my thumb, it can help me come back into my body. It can help me stay present with myself. So, waking up to the present moment using an intense sensation, you might use an ice cube for a similar reason. Then, for your A, you’re going to ‘Allow’ whatever is present to be there, to come up. So, if the meltdown is over, you might allow the tears to come. You might allow the rage to move through you while you punch a pillow. You might allow yourself to go outside and just give like a primal yell. Then the V is you’re going to, you’re gonna ‘Vent’ out what is getting stuck in your body. And so, for that, I’ll usually like do some sort of a sway or some sort of movement ’cause you get really stuck and clench-y.
And so, V is going to be about venting the body. So, like, I’ll sway, rock, hum, hold my chest and my belly, sometimes some ‘Voo’ breath to stick with that V. If you’ve never done this before, you ‘Voooooo’ like a cow. It helps the vibrations in your body move things through you. And then, ‘Ease’ to exhale and go back in. Because sometimes we only get 60-seconds between one meltdown and the next. And if we’re thinking, “I need to go for a long walk, or have a therapy session, or do yoga,” that’s not real. We don’t have time for that. So, this is that 60-second reset that allows you to come back into presence with all that is in your body. Because the goal isn’t to be calm, the goal is to be present. Present to yourself, present in the moment, able to witness what is happening, and stay with your child rather than trying to fake or manufacture some sort of calm.
The last tool that I wanna offer you before we get into some questions — and I see people are engaging in the chat and I love seeing that. Please continue to share what’s coming up for you and the questions that you have. The other piece that I wanna offer, and this comes from a similar place that when we think about meltdowns, we often think about them as a ‘failure’. Like, that prevention is the best. And so, if we couldn’t prevent it, if we couldn’t get everything in place to prevent a meltdown, well, we messed it up. We failed. And we get into black and white thinking, like either we’re good parents who get everything right and put everything in place so that our kids don’t struggle; or we’re bad parents who missed it, forgot the headphones, didn’t plan ahead enough, and then, oh, the meltdown happened and it’s, again, it’s my fault.
I wanna give you a different way of looking at this, and that is the idea of melting down better. In the course, I have a whole section on a bunch of different ways to melt down better. But the idea is what if we got really good at the bad stuff? What if being in a season where your kid is having a lot of reps at meltdowns and shutdowns and so is everyone in your family, it gives you a lot of tries to figure out what works for you. It gives you a chance to get good at melting down.
Can you make your house safe for meltdown to happen anywhere in the home? Can you find a way for siblings to know just what to do when the temperature gets too hot? They know right where to go. They know how to get themselves safe. They know what to do while it’s happening, and they know how to come back and repair afterwards. Can there be a sense of progress and momentum to go from punching you in the face to saying, “I wanna punch you in the face.” There’s so much — that is such a ‘better’, right? That is better. “I wanna punch you in the face,” versus actually doing it is massive for us. We gotta celebrate that. That is better.
And giving yourself that room, number one, that you don’t have to either get it right or wrong, that you can learn. Then you can show up to your kid transparently and say, “Kiddo, I love you so much. You know my job is to set you up so that you can get to school without a meltdown so that you can get your shoes on without a meltdown. I don’t want you to suffer, and I hate when it happens. I tried this thing and it didn’t work. I think you probably noticed that it didn’t work, and I wanna do better next time. Help me out. What would make that a better situation for you?” It opens up room for genuine collaboration because it’s not all on you to get it right or wrong. It’s a team effort to do it a little better each time.
Meg:
Thank you so much. A few people asked, so can you just say what each of the letters means again so we have it right there?
Amanda:
Sure Okay. W is ‘Wake the body’. A is ‘Align your energy’. That is helping your body shift from being totally in a threat response back into more in touch with yourself. V is where you’re gonna ‘Vent the tension’. E is ‘Exhale and move on’.
[Ending note]
If you enjoyed learning from Amanda in this episode, we want to invite you to check out her full course, ‘Supporting Autistic Kids in Distress’. In this three-and-a -half hour on-demand course, Amanda teaches you how to nurture your child in their greatest moments of overwhelm and distress. You’ll learn how to recognize the signs of meltdowns, shutdowns, and burnout; and how to bring your child back to safety without working beyond your own capacity or neglecting your own overwhelm. You can watch the course on-demand or in a discussion community with other caregivers. Get the details at parents.learnplaythrive.com/distress.
And as always, your purchases from Learn Play Thrive support our mission of uplifting Autistic voices and caring for our community. We support wealth redistribution by paying about 50% of all sales directly to our guest course instructors. We also donate 2% of all sales for parent courses to the Alliance Against Seclusion and Restraint. We will always be a loud and steady advocate for the most oppressed amongst us, even when it’s unpopular.
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