I’m back! Season 2 of the podcast—here we go! After a long pause, I’ve been feeling the pull to start podcasting again.

In this episode, I talk about supporting my kids through PDA autistic burnout. What even is PDA autistic burnout? What does it look like? What strategies were helpful? And what does life look like now that we’re (mostly) on the other side?

Navigating a season of burnout was incredibly difficult, exhausting, and isolating. If you’re in the deep end of it right now, I’m sending so much love and light your way. I hope this episode brings you hope—and helps you feel a little less alone.

COVERED IN THIS EPISODE:

• [00:00] I’m Back! Why I Took a Break from Podcasting. What’s New?
• [04:30] What Is PDA Autistic Burnout and What It Looks Like
• [08:55] Strategies for Supporting Our Kids Through PDA Autistic Burnout
• [09:26] Getting an Accurate Diagnosis Matters
• [13:52] At Peace Parents’ Paradigm Shift Program Review
• [15:04] Inner Work and Self-Care for Parents
• [15:47] Low-Demand Parenting: Reducing Pressure for PDA Kids
• [20:58] Structural Changes That Made Life Easier
• [21:52] Leaning into Child-Led Learning
• [22:49] Life After PDA Burnout: Our New Normal

RESOURCES:

• Full show notes: maybethiswillbethecure.com/blog/pda-autistic-burnout
• At Peace Parents’ Paradigm Shift Program: https://www.atpeaceparents.com/paradigm-shift-program
• At Peace Parent’s Free Burnout Masterclass: https://www.atpeaceparents.com/burnout

CONNECT

This podcast was born out of a desire for connection and community, so feel free to reach out—I’d love to hear from you:

• Spotify - Leave a comment
• Instagram - DM or comment @maybethiswillbethecure
• Email - megan@maybethiswillbethecure.com

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DISCLAIMER

The information shared in this podcast is for informational purposes only and is not a substitute for professional medical advice. Consult your physician before making any changes to your health plan. The host, Megan, is not a healthcare provider. Always seek guidance from a qualified health professional for your individual needs.

Welcome to maybe this Will Be the Cure, a podcast where the wisdom of a healing journey meets the warmth of shared experiences. Join as we explore the topics of healing, living with chronic conditions, chronic pain, neurodiversity, mental health, and parenting kids with disabilities. I'm your host, Megan.

Hi, I'm back. It's been a while. I. I think the last podcast episode I did was in last May. May of two thousand twenty four. And then, you know, life happens. I had started taking this online course. I have a web design little business and so I just wanted to level up my skills. So I started taking another web design course and then I took another web design course. And so trying to juggle caregiving on top of my web design business, on top of taking an online course on top of the podcast, just wasn't happening.

So I paused the podcast and then last October, I actually took a full time corporate job, which was not in the plan, but it just kind of fell into my lap and it sounded fun and I went with it. And it's been a really cool experience. So that has taken up a lot of my time.

But I just have been wanting to get back into podcasting because I really enjoyed the connections. I love when people, like, listen to something and then respond back to me. It helps the, you know, parenting experience or the living with chronic health experience feel a little bit less isolating.

And I also feel like, wow, I'm getting this Ivy League experience in life, you know, with different challenges and why not share that? Maybe it will be helpful to somebody somewhere, you know, not that I have wisdom to share, but I think sharing our stories can be helpful. Like, I've gained, you know, just ideas or different insights from other people's experiences and stories. And so I just have been feeling the pull to get back into it. So here I am.

And, you know, when I was doing the podcast a year ago, I really spent a ton of time. I would write a full transcript and in full honesty, my brain fog was so bad, so bad back then that I needed a full script in order to get, you know, do a podcast because I had to have the words written out. I couldn't just pull it from my brain. But my brain fog, thankfully has gotten a lot better recently. I still have some days where it's not as good, but I'm doing good today. So I thought, since I am working full time in this job and, you know, still a mom and still have the other life responsibilities, if I want to do this, I gotta find an easier way to do it because I would spend hours writing a script and I'd spend hours editing, and I would spend hours writing the transcript and a blog post to go with it.

And I just have been thinking, like, the only way for this to work is it's gotta be simpler. So I am just gonna show up a little bit more vulnerable and less polished and just see how it goes. And sorry if I'm like, really annoying to listen to. I guess you can not listen, right? There's always that option.

Anyways, what I wanted to talk about today is making our way out of burnout. So I've mentioned it before, but, you know, when we moved here, gosh, almost three years ago, where we had moved to Arizona, and my boys were both autistic with pda, adhd, you know, ocd, all the things, both went into autistic burnout. And it was a long, hard, hard time. But gradually we've made our way out of burnout. There's still some lingering symptoms, but for the most part, they're doing so much better and have a much bigger capacity than they did even, you know, a year ago. So I just kind of wanted to talk about what that experience was like.

And I know some people don't know what burnout is or autistic burnout. So I just want to talk about that for a second. I think anybody can go into burnout, but I know autistic people are especially vulnerable to that because there's certain sensory needs that aren't being met in our society or other, you know, other needs that are just butt up against the wall of how society does things. You know, our life isn't really, you know, this western life isn't really built around a model that is set up for autistic people to thrive, I think, in a lot of ways. And so I think they can be especially vulnerable to going into burnout. And I have heard that it's common, you know, especially for like, PDA autistic kids to go into burnout around, like six years of age. So, you know, think of, like school starting or the, you know, more demands placed on them.

So because both my kids are pda, any demands, external or internal demands, activates their nervous system and can cause a fight flight, freeze response. And my understanding of burnout, this is not clinical. This is just how I've taken it in and kind of understand it is. It's almost like their bodies get stuck in freeze, like in a freeze state. They've been pushed past their window of tolerance so many times that now their body's just Kind of stuck in freeze. And so why don't you think if you're like super sick or you break a leg or something like that and your body needs to heal, you know, maybe you're resting and you're watching TV and you're eating comforting foods and you're cuddled up in a blanket, you know, if you've been through something traumatic, those are the kind of things that your body might need. And same kind of thing for these kids or adults in burnout, you know, so what it can look like day to day.

And I'm just speaking about like PDA autistic kids, because that's been my experience and in the communities that I've been a part of where other parents have experienced similar things, these are some of the things that they've experienced. And I won't, you know, say the specifics of my own kids for their own privacy and, you know, out of respect for them, but I'll just talk about some of the things that are common and just let you know that, yeah, we have experienced a lot of these. So like meltdowns, like hours, long, violent meltdowns, like crying, screaming, throwing things for hours. Toileting challenges. So maybe kids that were toilet trained have a regression or they'll only go to the bathroom in the tub or outside, or they need extra help toileting where they didn't before. So all kinds of toileting challenges. It can cause sleeping challenges. So maybe their sleep schedule is totally off. Going to bed at like 3 in the morning and waking up at 2 in the afternoon. Or maybe they're waking up multiple times a night or needing you to sleep with them. Maybe even teenagers who maybe were previously sleeping independently and now cannot sleep without a parent. Another challenge, eating challenges. So some kids might stop eating altogether. They might be so restricted down to like one food in a specific bowl and or, you know, can't eat around other people. Really restricted eating or different eating challenges. Another symptom could be limited activity. So maybe they don't want to go anywhere. Maybe they only want to stay in the house. Maybe they only want to stay in one specific room of the house. Maybe they won't even leave the couch or their bedroom or their bedroom for days. And they might not want to be social, like not wanting to hang out with friends, not wanting to go do things with other people. Another common thing is hygiene challenges. So I'm talking going months without brushing teeth or showering or, you know, brushing their hair, washing their face, that kind of thing.

So all of these are some of the different symptoms that you might notice if your pediatric kid is in burnout. And I'm sure there's some similarities with, you know, with people in burnout in other capacities. But I'm just speaking to my experience and in the communities that I'm in, what things that people have talked about and have experienced.

So coming from burnout, where it's very isolating, very challenging, sad place to be, to coming out of it where hygiene is a lot better, eating is so much better, being able to be social, like, all those things start to improve. And I just kind of wanted to talk about kind of, how did we get out of that, you know, how did we get out of that hard place? What things were helpful.

And I think the first thing was getting. Getting an accurate diagnosis. So we had tried to get, you know, my oldest, we had gotten him evaluated when he was like almost seven, and it was not very thorough. And she even dismissed some of the assessments. Like, one of the assessments, he did score high. It was like an autism assessment. He did score high, but because of the way he was interacting in that one hour, two hour meeting with her, she's like, there's no way he's autistic and just wrote it off. And so it was really frustrating because we didn't get an accurate diagnosis at all.

And about a little bit before, my oldest was diagnosed with type 1 diabetes and we had that whole, you know, hospital experience and all of that. A little bit before that, I had heard about PDA and I had been listening to podcasts of this mom talking about her experiences, and I was like, oh, my gosh, it. It just fit. Like, wow, that. That sounds like my life. I just cried through every episode because it was the first time I had heard, like, a parent talking that I could relate to. Really? Like, oh, my gosh, that is my experience. Anyway, so I had kind of had that in the back of my mind that maybe PDA was at play.

And I had learned more about autism at this point. And I just started to, you know, suspect that, like, wow, there's a lot of similarities. I remember watching Love on the Spectrum. I think it was the Australia version. And I just remember being like, oh, my gosh, like, this is my life. These are. This is how my kids are. Anyway, so I just started to suspect autism as well.

Once I suspected pda, I realized we would need to find someone that was PDA informed, like a PDA informed therapist, so that they could be able to make that assessment. Because PDA isn't recognized officially in the US yet it's not on the dsm. A lot of times kids in the US that are PDA are diagnosed with ODD instead. Oppositional Defiance disorder. But it's starting to become more recognized in the us. It's recognized in like the UK and Australia.

Anyway, so I wanted to find a therapist or psychologist that could identify PDA in my kids because that just changes how you approach everything if you have. If you have that PDA lens, like you are going to approach therapies and everything in such a different way than if it's just autism without the PDA piece.

So I found there's a list you can get online that has, you know, PDA aware or like PDA trained psychologists, therapists, occupational therapists. Anyway, so we got on a couple different wait lists. I think it was on three or four different wait lists. Anyways, it was just a long process. But finally we were able to get an appointment with this amazing neuropsychologist in Illinois actually. And they, through psypact, they're able to do assessments in Arizona too. And so we finally did a thorough evaluation.

And it was virtual, obviously, because they're in Illinois, but they just really took the time. So it was first of all, tons of assessments, like online assessments that we filled out as parents. And then there was some assessments that we did with my boys, which was a little bit challenging. So we just did the best that we could. And then they met with the boys individually, like multiple times for hours. And then they met with us multiple times for hours. So they just did a ton of like, data collection before they made an assessment. It was very thorough.

And then finally we had a diagnosis that fits. And that just kind of changed everything because we knew what was like, we had a better understanding of what was going on and what strategies would be supportive to what is going on. So I think that was the first piece that was really important. The second thing that we did is we took the Paradigm Shift program from At Peace Parents. So she's a mom. She's also, I think she's like a scientific researcher of some sort. And she. Her child is PDA and she created these different programs around it.

And so we, once we had the PDA diagnosis, we signed up for that program. And basically there's all these different lessons where you learn about PDA and you learn about different strategies that are helpful. And then there's the coaching aspect of it. And a lot of it really is changing yourself, I would say, so changing your own mindset around things and changing how you show up and how you handle situations. And so I feel like that was huge for us as parents to change how we responded to things and how we interacted. And it was super helpful for my boys and we didn't have to change them, it was changing us. So that was super helpful.

The next thing that we did, I worked a lot on myself, so I do coaching. I meet with a coach every week to do like thoughtwork coaching and then I do therapy regularly. And I've just done a lot of work on myself. And so I think doing that, I show up differently and it reduces, you know, the stress in the home. And I think that's a really important piece. I think autistic kids are very sensitive to our energy and to stress to everything. And so I think me showing up better and me being better ultimately has a positive impact on them, the whole family, really.

Another thing we did, we really leaned hard into low demand. So if you are in the PDA space at all, you might have heard of lowering demand. So it's just this idea of, you know, if your child is having a fight flight response to every demand, it's just trying to reduce the demands on them. You can't reduce everything. Obviously their body is going to give them the demand that they need to go to the bathroom. There's nothing that you can do about that, you know, or they're going to have the internal demand that there's hungry sometimes and you can't do anything about that. But you could start putting out snacks in their vicinity multiple times a day, prompting them to eat. And that might reduce the internal demand and it might reduce the external demand of you being like, oh, it's breakfast time and you know, instead just like bringing them snacks throughout the day. So we stopped making them do things that they didn't want to do as much as possible.

It's hard because, you know, as parents we have our own needs too. So we had to find ways to get our own needs met without asking that of her children. So for example, for months, like they wouldn't want to go anywhere. Well, I get stir crazy and that's not good for my own mental health. So what I had to start doing or they would panic when I would leave. Like literal huge panic attack meltdowns for hours if I would try to leave the house. So I couldn't leave the house. But also that's not healthy for me either. So one way that I would get my own needs met is I would go outside every morning while everyone was asleep and I would just sit on the porch and soak up the sunshine. And that's all that I could access at that point without asking too much of them. But it was enough to get a little bit of my needs met and not ask anything that was too hard of them. So reducing that demand on them, where maybe before I'd be like, no, we have to get out of the house and try to force them to go, which ultimately doesn't work anyways.

So, anyways, we just really leaned hard into lowering demands and reducing our verbal demand. So, for example, instead of like, hey, it's time to brush your teeth, I would just get their toothbrush ready and set it on the counter. And then there was no pressure, like, they could interact with that or not. And I had to, you know, deal with my own fears and frustrations and worries about them not always brushing their teeth. But even when I forced it, they wouldn't either. So I just had to be okay with a new way of doing things. Just more offerings, less demands, and doing more things for them. So doing whatever we could to kind of soften the load on them while still trying to get our needs met the best that we could. But I won't lie, this is hard, but ultimately, I think it was super helpful.

Another thing we did is part of that lowering demands is making sure that we're doing true drops or giving them real choices. So, for example, I love holidays. They're, like, super important to me. I really want to be there with the family. But when my kids were in burnout, that was so hard for them to do. And I remember one event, we were supposed to go somewhere with a family. And I remember trying to lean into that low demand of, like, okay, you don't have to go if you don't want to. Like, I will stay home. But it wasn't a true drop because I was upset about it. So they could sense that. So they knew their choice was essentially go, which was outside of what they felt they could handle or what they wanted to do at the time, or they could upset their mom. That was kind of the choice that I was giving them. So to do a true drop, what we did instead for a different event was, you know, my husband doesn't get as upset, like, about missing out on certain holiday things. The holiday stuff isn't as important to him. So instead, what we decided was, if they didn't want to go, I would go and my husband would stay home with them. And so then their choice now was, oh, we can go, or we can stay home, and mom isn't upset because she's. Obviously, I would rather be there with my family. I want to spend the holidays with my extended family and my own immediate family. But it was easier for me to be able to at least go and not feel like I was missing out, even if it was by myself. So, you know, that's just an example of making sure we were giving them real choices without these, these perceived consequences or like, without the pressure, I guess I should say.

Okay. Another thing that helped is just some structural things. So my son finally got an insulin pump. And so instead of having to do multiple shots a day, he just has to do sight changes every three days. And so that was huge because he had started really resisting eating because he hated the shots. So this helped him eat more regularly and it just was way less demanding on him. And so, you know, think talking about lowering demands, that was a huge lowering of demands because we didn't have to get him to take a shot multiple times a day with a pump. We push a button and it delivers insulins. And then we just had to worry about the every three day site change. And so that just went so much better.

Another, like, structural change. Leaning into child led learning. So, so, you know, we had tried public school, didn't work. Then we had tried homeschooling where I had, you know, curriculum that we used and lesson plans. And then, you know, with my kids in burnout and them having a really hard time accessing any basic life stuff and especially like, you know, education, so we leaned into child led learning. So just following their lead and supporting their learning that way. Lots of Legos. So for a while that was the only thing one of my kids could access that was somewhat educational was Legos. So we just leaned in, we did lots and lots and lots of Legos.

And then I think another piece of it is time. Like the body needs time to heal, so we just gave them that space and time to heal. And little by little, things started to improve. They started having the capacity to go more places and wanting to play with friends again, being more creative, you know, hygiene improving, eating improving, going from five hour meltdowns every day to, you know, a short one every week or something like that. So more connection with us.

So, you know, when we were in the deep end of burnout, we couldn't even handle cooking. Like, even making meals was too much because there was too much going on with them. And we literally were like eating out quick foods three meals a day. It was out of control. And now we eat most of our meals like home cooked meals at home. And anyways, things have just gotten way better. And obviously we've dramatically changed how we parent and we've totally changed our lives to support their needs. So there's some like, big structural changes that we made and we don't have the same expectations. We don't push the way that we used to. You know, our lives are really different. There are still some lingering symptoms of burnout that's really challenging. Like sleep has still not returned to normal and it is hard, hard, but so much has improved, so much has gotten better.

And anyways, that's been our experience in burnout and coming out of burnout and that was what was helpful for us. And I know sometimes, I don't know, I remember listening this therapist one time was talking about like intuitive eating and she's like, I just try to eat what I feel like in the mood for each day. And I was like, I am on a really tight budget and I meal plan for the whole month so that we're very, you know, careful with our resources. And I can't just eat whatever I want to eat in this moment, you know, And I remember sending her a message like frustrated about that. So as I'm talking about these things, I'm very sensitive to the fact that some of these strategies that we used are not accessible to everyone. You might not be able to just buy Legos whenever your kid wants Legos. I totally get that, or afford an evaluation or anything, but I feel you. I'm sorry. And I think there are still little things that you could do to start supporting your kids if they're in burnout. Like, you know, lowering demands in a way that works for you, it's going to look different than it did for our family.

But anyways, I just want to send a lot of encouragement. Burnout was so, so, so hard and I'm really glad that we've made so much progress out of that dark hole because it is hard. And so I'm just sending a lot of love and support your way. And thanks for being here and letting me talk your ear off.

Thanks for joining us today. Where dreams are nurtured, challenges are met with resilience, and every tiny step forward is a victory hit. Subscribe so you can easily find new episodes and join this community, because maybe this will be the cure.