A Conversation with Dr. Megan Anna Neff About Autistic Burnout

Debbie:

Hey, Megan Anna, welcome back to the podcast.

Dr. Megan Anna Neff:

Hello, it’s so good to be back. It’s good to see you.

Debbie:

It’s nice to see you too. And yeah, I’m excited to get into your book and hold on, had it open over here. I’m excited to get into your brand new book, which I just read and thought was so helpful. And I just want to, even before we get into it, listeners, I’m going to have an extensive show notes page for this episode. I already know that, but please go back and listen to the episodes I’ve done with Megan Anna in the past. I think this is your third or fourth appearance on the show. And also check out some of Megan Anna’s resources because there’s a lot, your sub stack is fantastic. You have your own podcast, your Instagram. There’s a lot of great content that you’re putting out. I learned so much from you. And today’s conversation, I’m sure will be no different. So. Now that I’ve been babbling for a good minute, do you want to take a few minutes and do your own introduction to you and the context for the book that we’re going to be talking about today?

Dr. Megan Anna Neff:

Yes, I think so. Social ligamenting is always hard for me. And first of all, thank you. That was a very generous introduction to me and my work. And likewise, I equally am so appreciative of your work and all that you teach in the parenting world. So see, I did a social lubricant thing there where like you gave me a compliment and I responded with a compliment. We can do this.

Debbie:

Thank you. Yeah, you’ve got this.

Dr. Megan Anna Neff:

So about me, about this work, yeah, I’m Megan Anna, clinical psychologist, and my backstory is that I discovered that I was autistic at the age of 37 after one of my children, and then a year later discovered the ADHD, and started in our Divergent Insights because I realized like, wow, we’re missing so many adults. And my field, because my field did not, my training did not prepare me to see myself or my child. And I know that this discovery, not to be overly dramatic, but I know that for myself and for many, it is life changing and often life saving. And so that’s why I started this work about four years ago.

And one of the first things that I, so after discovering I was autistic, I started Googling like every weird experience I’d ever had, like autism and sleep. And I was like, sure enough, there’s a lot of research around why I’ve always had terrible sleep or even things like sleep paralysis, why, how that’s more common for us. So part of my early research was learning about autistic burnout. And that was a pretty big aha moment for me because I’ve always struggled with depression and, and fatigue. And I was able to look back at my history and see how a lot of the depressive episodes I’ve had started with Autistic Burnout. So this became one of the first kind of really big theories or ideas I started working on in the work I did with Neurodivergent Insights. The first digital workbook I ever made was an Autistic Burnout workbook. It was terrible. It was terribly designed. I’m so sorry for people who bought the early version. But that was the very first digital resource that I ever created and put out for sale. And then most recently, with Simon and Schuster, we’ve published the Autistic Burnout Workbook, which is really kind of a compilation of the last four years of my work in synthesizing a lot of the things I’ve learned about what helps build a life that is a little bit more resilient to burnout. I don’t want to say it cures burnout. I think that would be an oversimplification of how complex energy is for us. 

Debbie:

I appreciate that introduction. You’re reminding me that, so this is your fourth appearance. And your last one was actually about your book, which was Self-Care for Autistic People, which is very connected to this book, yet very different. And that book to me felt revolutionary. It was so much more than, and we talked about this in that conversation, than like what you think of when you think of self care, but really deeply knowing yourself. How do you deeply understand who you are and what you need to live in the world as an autistic individual? So, and so interesting that this was the, I had no idea this was the first thing you’ve created. I’ve gotten near RSD downloads, like you do create so many wonderful resources. And this book is no exception to that. So what I like to do is just make sure we’re all talking about the same thing. So I don’t know if you have a definition, I’m using air quotes of autistic burnout, but what, how do you define it?

Dr. Megan Anna Neff:

Yeah, so this is where I really lean on Dora Raymaker’s research that they did with their research team back in 2020 or 2021. well, okay, let me zoom out first. So burnout, the clinical world is finally talking about burnout, general burnout, not autistic burnout. And when we think about burnout, we’re really talking about burnout of the nervous system. So first of all, I think that’s a helpful framework and any human can experience that. And I think especially right now, post pandemic, a lot of folks are in in some form of burnout. And I just think modern society doesn’t set up our nervous system well to not be in burnout. that would be, I think that’s a helpful anchoring concept. Now, autistic burnout and how it’s perhaps distinct from other forms of burnout, there’re three themes that they found in their study that emerged. So one is that pervasive exhaustion, and that can be physical, it can be mental. So I describe it as the wall of fatigue, like it feels like I’m hitting a physical brick wall and my body is just like, no, you can’t be, okay, I always confuse vertical and horizontal. My brain is saying you can’t be vertical, you have to be horizontal. Like it’s just this really intense fatigue for me.

But it can also be mental, so cognitive fatigue, emotional fatigue, so we’re gonna have less emotional bandwidth than we might normally have. So that’s a core element is that just pervasive fatigue, and it’s not the kind of fatigue that like, okay, I got a good night’s sleep and I bounce back. The second aspect is increased sensory sensitivities. So especially if the autistic person is more hypersensitive to begin with, then seeing an increase in that. So perhaps more sensory meltdowns or shutdowns or sensory transitions will become more difficult. So things that perhaps used to be tolerable, just that can create a sensory meltdown or shutdown. And then the third piece is loss of skills. And so that can look like executive functioning going way down. There’s a term in the medical space, activities of daily living or ADLs or activities, instrumental activities of daily living. So, activities of daily living would be things like bathing, clothing, of basic things a person needs to move through the day and be able to function. And then instrumental is a little bit more of those softer things like making appointments, your billing, managing your medications, things like that. for adults, we would see lots of declines in that area, as well as for children. And this can be the part that I think is most confusing for folks because it can be like, well, last week or last month, you were able to do this really complex thing. So for children, like, they were able to do this really complex research project and now you’re struggling to go to school. So the ebb and flow of functioning can be really disorienting, both for the person, but also the people around that person.

Debbie:

So you mentioned that you talked about depression and fatigue that usually started in your experience with autistic burnout. And so as you’re describing these symptoms, hitting the wall of fatigue, mental fatigue, these increased sensory stimuli, the more meltdowns, those things, and then the loss of skills that you just described, those also could be seen as a major depressive episode or something and maybe treated as such. So could you talk a little bit about the overlap between burnout and depression? I know that’s an area of expertise for you is overlapping and co-occurring conditions.

Dr. Megan Anna Neff:

Yeah, so it absolutely will look a lot like depression and then can easily lead to depression. So it’ll look like depression in the sense that when we’re depressed, it’s like our system is shutting down. And so we’re very, we tend to be very lethargic when we’re depressed. And so yeah, that wall of fatigue, the difficulty with executive functioning, the more kind of emotional sensitivity, all of that is gonna look like depression. Some of the things that distinguish it from depression. So there’s this clinical term that I will probably mispronounce, anadina, anadina, do you know how to say that one?

Debbie:

Anhedonia?

Dr. Megan Anna Neff:

Ahnedonia, there we go, thank you. And feel free to keep that in as a moment of honoring dyslexia, anedonia. So it means loss of pleasure. And this is a core piece of depression. And this would be one of the things that differentiates it from burnout is things that used to give a person pleasure no longer do, like the person can’t access it. Now in burnout, it might be hard to access things that often bring autistic joy, like if the person has special interests, because of fatigue. So one of the questions becomes, well, can you still access that special interest and does it bring you pleasure? Or is it that the whole world feels grayscale and nothing brings pleasure, nothing brings joy, nothing brings comfort or delight. And that would be an indication that we’re trending more toward depression. And the hopelessness, hopelessness is a huge part of depression as well. I often kind of simplify this as a depressed mind. Depressed mind tends to feel really negative about self and the world. there’s, I’m dropping lots of big words here. Tell me to slow things down if, but there’s this idea that I find it really helpful to understand that kind of memory and congruence effect, which is if I’m, whatever emotional state I’m in, it’s gonna be, the memories I tend to recall match the emotional state I’m in. And that’s just true of humans. So if we’re in a joyful state, we’re more likely to recall memories that are joyful. If we’re in a depressed state, we’re more likely to recall memories that align with our emotions, so depressed. And then our forecasting of the future also. So that sense of it’s always gonna be this way, there’s a lot of doom and gloom. So depressed mind is one where it’s really hard to access hope. And it’s really hard to access both present self-hope, but also past and future hope. And that would be another indication that this is more than just autistic burnout, that we’re also looking at depression. And then there’s one other distinguishing marker. Do you want to talk about suicidality on this episode, or would you rather we avoid that?

Debbie:

I’m fine talking about it if that makes sense within this context. 

Dr. Megan Anna Neff:

So this, I always like to clarify, this is a working theory of mine. I haven’t seen this in the literature, but this is a working theory of mine. When I’ve talked to folks about this, it seems to, the response from the community so far has been like, yeah, that resonates with my experience. one of the things that, so autistic burnout can be one of the pathways to depression and suicidality. We know that suicidality is very high, autistic people are at a very high risk for this. Which is one of the reasons why I think talking about autistic burnout is so important. And one thing that I think can be common in autistic burnout, but might not be depression, is what’s called non-suicidal morbid ideation. So this is the kind of thinking where if I just didn’t wake up tomorrow, that’d be a relief. That’d be okay. So it’s often a desire for things just to stop, to escape what is really, really hard.

Now when we’re talking about suicidal ideation, that tends to be a more active desire to unalive oneself. And there’s also that sense of hopelessness and often a sense of I’m a burden to people around me. And that’s a different experience than non-suicidal morbid ideation. And if that is present, then absolutely, I think we’re talking about depression at that point. If it’s the other, I think the conversation becomes like, wow, there’s a lot that you are wanting to escape right now and that makes sense. And how do we relieve some of what is hard? Because your mind is screaming at you that this is not working. it’s almost, so a lot of suicidal ideation is about trying to, your mind is trying to give you an exit ramp because the situation you’re in is creating so much suffering or pain.

Debbie:

Mm-hmm. Yeah. Everything that you just explained that makes so much sense now, like, thank you for walking us through that, because it seems very clear. I think when I was preparing for this interview, I wasn’t sure how depression differed from autistic burnout. Like, in my mind, I was making it one and the same or really hard to tease out, but the way that you just broke it down for us makes a lot of sense and is very clarifying. You talked about, again, that autistic burnout can lead to depression. Is it possible to be both in autistic burnout and depressed at the same time? And I just think about, you know, we hear about individuals and some of our kids who are in treatment for depression for years and you know, then it’s like, well, they’ve got treatment resistant depression, because we’re doing all these things, and it’s not working. So have you kind of seen that happen where they’re characterized as having that sort of depression, but really, there’s something else going on?

Dr. Megan Anna Neff:

Absolutely, and this is part of what makes it so tricky is, first, I’m gonna go back to the first part of the question and then the second. It makes so much sense that autistic burnout would often result in depression. Because if we think about some of the things that make us vulnerable to depression, when our lives are not aligned with what matters to us and our values, and when we don’t have access to meaningful connections or meaningful activities, there’s so much vulnerability for depression. Or when we’re feeling negative about ourselves. So if we think about burnout, well, skill regression, or I don’t have energy to engage meaningfully with others. I don’t have energy to engage in my interests. And so, of course, of course that’s gonna set us up for depression. It just makes sense. So yes, then we show up in therapy and maybe there’s not even awareness of autism, let alone autistic burnout. And there’s a few things I see that can happen that end up kind of getting us stuck.

And one would be, so a common treatment for depression is called behavioral activation. And I actually find it a really effective treatment for depression. I will do this when I’m depressed. It’s because our fatigue is so high when we’re depressed, we fall into what’s called the lethargy cycle, where it’s like, well, my mood is low. I’m going to do less. And then the less we do, the less sense of achievement we have, the less sense of accomplishment, the less, again, the less access to the things that give our lives meaning, so then our mood decreases further. So behavioral activation is a way of interrupting that cycle of saying, we’re gonna get some momentum here. And even if it doesn’t feel pleasurable, we’re gonna do some things. And it’s very gentle, and it can, again, it can be really supportive for depression.

However, if autistic burnout is not considered as part of that, or an autistic person’s sensory profile is not considered as part of that, you might go too fast too soon. And it might be like, well, let’s plan a social event, and let’s make sure you’re feeling an achievement. So let’s do all these activities. But when both are present, part of that behavioral activation, you’d actually want rest to be built into it, and respite, and sensory detox time. And so that would be an aspect where if the fatigue and the energy limits and the social limits and the sensory profile aren’t being considered, it could actually deepen the burnout. So that would be one area where you’d want to adapt that so that there’s a lot of that rest and respite built in.

And then the second area has to do with that depressed mind piece. A lot of therapies around depression tend to be CBT focused, which we’ve actually talked about on your podcast, kind of the different therapies that sometimes work for us, sometimes don’t. And again, if we think about depressed mind, we can understand why CBT or other approaches like kind of mindfulness-based, so like acceptance commitment therapy is one I like. It’s slightly different from traditional CBT. We can understand why these are helpful because it’s about detaching from that depressed mind that is telling you everything is terrible. However, if that’s not done with context of the autistic person’s lived experience, that can be deeply invalidating and maybe they’ll spiral into more shame if they’re trying to perhaps reframe some thoughts. But they’re not just depressed thoughts, they’re also thoughts that are connected to internalized ableism and to burnout. And so that’s another area where depression treatment would need to be adjusted.

Debbie:

Yeah, that makes so much sense. I just want to say that right up front in the book, you say that “tackling burnout requires energy and this is a particularly cruel paradox.” And so even though you just described the rest and we’ll talk more about that, but the rest that’s required, it also does require some intervention or intrinsic intervention, I guess, right, in order to kind of move through it.

Dr. Megan Anna Neff:

Yeah, it is a painful irony that you need some energy and some resources to even be thinking about, for example, okay, what is my sensory profile? And how am I gonna maybe bake in some sensory accommodations into my life? That takes cognitive energy, that takes physical energy to do some of that work, or even learning to learn about our nervous system and to incorporate some of those supports. Or sleep, sleep is a really hard one in that a lot of the things that support sleep are really hard to do and requires a bit of discipline and frankly, willpower, which is not my favorite word, but it does. And I say that as someone who knows all of the sleep things. And sometimes I follow them and sometimes I don’t. So yeah, the supports that help us require cognitive thinking and energy. And so that is a pretty brutal aspect of the burnout paradox.

Debbie:

Yeah. Yes, I I read the sleep chapter with much interest and just thinking that’s just such a tricky situation for parents who have kids and burnout because so much of sleep hygiene is dependent on the person struggling to make some choices or to practice, have the initiative to do some things that they may just not want to do. I want to go back to thinking about children and autistic burnout, because I get asked this question all the time. You know, so many parents in my community, their kids are in school refusal or they’re, you know, they have kids with a PDA profile and they are just really lowering their demands and recognizing at some point, I think my kid is in burnout. And in your book, you mentioned earlier, Dr. Raymaker’s  findings are that burnout results from an accumulation of stressors. So that made me think when I read that, like, does that mean little kids can have, you know, are there the kind of stressors that a little child would experience? Is that enough to accumulate and create burnout? Like, what are we looking at in terms of the child experience of burnout?

Dr. Megan Anna Neff:

Yeah, so far as I know, and I’m seeing more and more people talk about autistic burnout in children, which is great, because I think it’s such an important lens. But I don’t know of research that specifically looked at children. However, to me, just intuitively, it makes so much sense that a child could experience burnout, especially if we think about the transition to preschool or to school, that’s, and change is a big thing for autistic people’s nervous systems to take in. And so it makes sense, and especially if there’s limited accommodations in place or maybe the sensory needs aren’t known yet. But it just makes sense to me that children would also experience burnout. I will say the thinking is that puberty can be a trigger for burnout, which makes sense, again, if we’re thinking about big changes and hormonal changes. And so there’s some kind of developmental touch points where kids can be more vulnerable to it. It just makes sense to me that it could hit at any point in the lifespan.

Debbie:

So, you talked about the difference between depression and autistic burnout and shared some of the things that someone in burnout might be experiencing. Are there any other signs that parents can be aware of, whether they’re tweens or adolescents or young adults that we should be paying attention to and think, this actually, this is looking like burnout to me.

Dr. Megan Anna Neff:

Yeah, so some of the things that a parent might see would be that increase in meltdowns or shutdowns. And again, especially if it’s something like maybe it’s a shower, like a shower has a lot of sensory transitions to it. Maybe the child was for the most part able to handle that, but now showers are leading to meltdowns. That would be an example of, okay, this person’s sensory profile, AKA their nervous system is kind of on flames right now. Also more emotional meltdowns as well. So more emotional reactivity or sensitivity would also be common. More of that fatigue, so difficulty waking up or more school refusal than is typical if that’s part of the baseline or school avoidance if that is part of the baseline experience in general a withdrawal, like just a withdrawal because of the fatigue. And then that loss of skill as well, maybe you’ll see there were things they were able to do that they’re no longer able to do. And I think that’s really important because it can, as parents, sometimes we might interpret that as defiance if we don’t understand these things. And it could be a genuine loss of skills, maybe it’s not PDA, maybe it’s not defiance, is the child literally can’t do that at this moment.

Debbie:

Yeah, that’s super helpful. Okay, so then let’s pivot to what do we do about it? And so, I mean, that’s your book is your personal, your book, it’s called the Autistic Burnout Workbook, Your Guide to Your Personal Recovery Plan and, you talk about two key strategies. You’ve got reducing your stress levels, which you use the faucet metaphor, which I love a good metaphor. So turning down the faucet and then increasing your coping strategies, which is expanding the bucket. Would you kind of give us an overview of those two key strategies?

Dr. Megan Anna Neff:

Yeah, absolutely. And this metaphor is not unique to me. It comes from stress literature, but it just felt even more appropriate here because when we think about building in  accommodations, it’s like, that’s a way to expand our bucket. But essentially, the idea, again, for any nervous system, it has a capacity. It has some true capacity. And it can only take in so much before it overflows and it’s too much. So if we think about a faucet and then a bucket, there’s going to be two factors: how big is the bucket and how much water is coming out of the faucet. Even if it’s a mid-sized bucket, but the faucet is just, you know, tons of water is coming out, it’s full throttle, that’s gonna overfill pretty quickly. If it’s a really tiny bucket, and even if it’s just a trickle from the faucet, it’s still gonna overflow pretty quickly. So we wanna address basically both sides of the coin of the stressors, the things that are, or the demands, the things that are creating demands in our life. And then also the size of the bucket, which would be things like nervous system resilience and basically the sturdiness of how much we can take in. And again, autistic people in general, we tend to start out with smaller buckets because of that more sensitive nervous system that we have, because of that sensory processing, because in general, we just need more rest than most people. So we start this world with a more vulnerable bucket to begin with. And so yes, those would be the two sides of building and supports.

Debbie:

Yeah, when you talk about sturdy, think about Dr. Mona Delahooke talks about the sturdiness of a nervous system platform. And that’s just so helpful, since I heard her talk about that, to really think about this. That’s what you’re starting with, right? And we know that our kids tend to have a less sturdy platform. so it’s easier for them, right, to, I would imagine, to get dysregulated and move into burnout.

Dr. Megan Anna Neff:

I love that language. I haven’t heard that before. That’s great.

Debbie:

Yeah, I think she writes about it in her book Brain-Body Parenting. And yeah, it just really clicked for me when I heard her talk about that. I want to ask about this idea of recovery. So the word recovery is in the subtitle. And so I’d love to know what does recovery from autistic burnout mean? And then of course, I know the parents are going to be like, how long does it take? How long do I just have to back off? let’s start with, and of course it looks different for every person, but how would you describe recovering from autistic burnout?

Dr. Megan Anna Neff:

Yeah, and I absolutely think it’ll look different for every person. And I think of recovery as, even this feels like not a great definition, but back to what your baseline is before, kind of before the significant episode. And so everyone’s baseline is gonna be different, right? Their executive functioning baseline, their sensory profile baseline. And sometimes it can also be hard to know what our true baseline is. That’s why it might not be the best definition. I think, and frankly, I think there are some folks who, well, I’ve heard people talk about this where they don’t ever fully get back to what their baseline was before a significant burnout. These are mostly adults though, where it’s maybe been brewing for 40 years and then they experience that. I think when I think about what I hope for, for myself and my kids and other people, it’s can I get back to a place where there’s more alignment in my life, where I’m able to move toward the things that matter to me, toward the relationships that matter? Is there capacity for that? And if I’m in a season where I’m able to do that, I feel like I’m doing pretty okay.

Debbie:

Yeah. Yeah, that’s helpful. And I also just want to reiterate that your book is written for autistic adults who are moving through their own burnout. So it is in a parenting book. Of course, we also have many neurodivergent parents who listen to the show and adults who will resonate. And I think it’s so helpful for parents of autistic kids to really understand what burnout looks like and how we can support our kids in moving through it. If we could go there for a moment, I’m just like, I’m thinking of these conversations I’ve had with parents whose kids are in burnout and who are, the parents are doing very low demand there and there’s a lot of, the questions I get are how long do I, is it okay if I just let my kid stay in their room, not come out, keep their own hours, be on their screen? What does this actually look like? And I don’t know if you can answer that question. I didn’t tell you I was going to ask you that question, but just any general thoughts on what should our priority as parents be if we’ve got a kid in burnout?

Dr. Megan Anna Neff:

So my general thoughts are this question makes me really anxious because I’m still sorting it out and because I don’t think we have enough research and here are my thoughts that I might want to change in six months or a year. And this is where I’m in it too, right? I’m in it as a parent trying to sort this of dropping demands and okay, I’m trying to find some anchoring ideas here. So social withdrawal, that is typically seen as a sign of depression or worsening anxiety. And so it’s often seen like that’s a bad negative thing. Now, in the context of autistic burnout, there can be strategic social withdrawal where a person’s doing that to reserve energy. One thing, and I prepped to talk on this and then I didn’t give it, because I was like, this is gonna get some pushback. This is the first time I’m publicly sharing this idea so we’ll see how it goes.

Debbie:

Okay.

Dr. Megan Anna Neff:

The title of the talk that I almost gave was “accommodation overshadowing,” which is where we, so in anxiety treatment, accommodations are seen as kind of a bad word, and both for OCD and for anxiety, where what can often happen is the individual or their family starts to accommodate the anxiety by helping making the person’s world smaller. Okay, in my postpartum period, I had a lot of anxiety, and so I would drive to the grocery store and then I would just not go in because I was very anxious. Specifically, I was anxious around mass shooting. This is gonna be a heavy episode. And so I would drive to the grocery store and then I would leave because of the anxiety. And yeah, there were sensory pieces in there, but the reason I was leaving was the anxiety. So that would be me accommodating the anxiety, letting the anxiety drive my decisions. And the reality was, like, my family needed food. And so when we’re working with OCD or anxiety, we want to address those accommodations, because otherwise our worlds get really, really small. And I’ve lived that, and I’ve experienced that.

Now, accommodations in the neurodivergent space is a really positive thing. We want to accommodate those neurodivergent traits. We want to accommodate the sensory needs. One thing I’m trying to tease out and something that I sometimes worry about in the low demand parenting space is are we over accommodating the anxiety and the OCD in accommodating the neurodivergence in a way that then that child’s world becomes very small in a way that actually isn’t supporting them in moving through mental health issues and in moving through their burnout. So for example, and then screens again becomes a really sensitive topic, but is spending 12 hours a day on screens, is that actually helpful for burnout? And it depends how the child’s using the screens partly, but there’s a lot online that we might access that absolutely activates our nervous system in ways that is not supportive. Things like fresh air, things like access to nature, and I realize that there’s privilege in even being able to access those things. Movement, these things are supportive of burnout recovery. And so walking that line of dropping demands, reducing demands, and supporting activities that do help the body to heal from burnout, I think that’s a really delicate dance. And I think it’s hard to talk about in this space. At least I have found it hard to get at kind of really nuanced conversations around how do we do that. The language that we use with our children is stretch. We’ll talk about, and then we’ll talk about like, what’s driving this right now? Is it health, is it energy, is it anxiety? And so it’s building really good language with our children to help them understand why they’re withdrawing or why they’re needing a day in their room. And then also having language of, is this a time where we stretch? Do we do a session on the treadmill to get some movement in?

And I think there’s a pendulum swing, right? Because so much parenting has been not neurodivergent affirming. And I’ve seen this in myself. And then also, there’s things I didn’t get as a child that I wish I would have gotten. So there’s a natural human tendency to pendulum swing to the other side of, there’s going to be no demands. And my child can stay in their room all day on screens forever. And is that actually supportive? I don’t think so and I feel really anxious saying that because I feel like the way that that can be received in the neurodivergent affirming world, it can sound like, yeah, I don’t know…

Debbie:

Yeah, I think this conversation is loaded in many ways because parents don’t know what to do, they’re very strong, especially when we talk about neurodivergent affirming. I agree with you that there can just be extremes. And so it can feel challenging, really, to kind of try to see both sides and to navigate that. And I think it’s helpful because there are a lot of people who are very uncomfortable with the more extreme. Let me ask you another kind of parenting experience question. So I also hear from a lot of parents who are in active burnout themselves or coming out of burnout, who are parenting kids who are in burnout. I’m just wondering if you have any insights beyond kind of put on your own oxygen mask first, right? Like, which is, you know, of course we do need to kind of tend to ourselves, but what would you say to those parents who just feel like, I’m just so in it, I don’t know how to get out of it?

Dr. Megan Anna Neff:

And this is where I find we bump into the limits of the burnout conversation in the sense of, or maybe we just bump into a different conversation around some of the problems of how modern society is set up. Like we were never meant to do this alone and the systems do not support families, and especially autistic parents and parents of autistic kids. And this is where I want to punt the conversation to be a systemic issue, because it is a systemic issue, but then the systems aren’t there to support us, so it becomes an us thing to solve. And it’s also where privilege gets pulled in around how much access do we have to restructuring things or to doing things differently or to taking reprieve time? So it’s a really complex conversation. And to not fall into helplessness, some of the things that have been supportive that I consider are in general, do we build a lifestyle, a home that is more gentle on all of our systems, sensory systems, nervous systems?

How do we develop language around what’s happening? So I feel like I’m a broken record, but I talk about clashing sensory needs a lot. Do we have language for that? Do we have language for nervous system breaks? Can we develop a family culture where it’s normal to need to step away and take a moment? Are there practices that, like parallel practices we can do with our children where we’re both getting to experience a more low demand experience? For example, for me and my kids, Grace and Adam, is a special interest show. so, especially when I’m in low energy seasons, we will, that’s a way that we connect and it’s restorative for both of us. Or a lot of it can also be around managing just family expectations. And I think a lot of people are already doing this, but like there’s a word for this that I’m forgetting that, deconstructed meals, which is a really fancy way of saying basically snack trays. Can we do deconstructed meals versus complex meals? And again, most families are probably already doing pretty clever things around food, but are there ways as a family, not just for the kids, to build a lower demand, less friction lifestyle? Are there expectations the parents holding that perhaps they can work on releasing. And especially with that autistic mindset, it’s really easy to fall into, this is what good parenting looks like, so I’ve got to do this, this, and this.

And so that would be one thing to address. Another practice I have, and I don’t know why, it just works for my brain, but I’ll say, how can I make this moment 2 % better or 2 % more restful? So for me, might be, I’ve got, so look, I can add, but I just happen to have it. I’ve got the Sensate, which is a vagal nerve stimulator. I like this one, but there’s a lot on the market. And I’ll maybe put this over me and a weighted blanket and a stim song. And maybe I’ll do that while I’m either spending time with children or if I’m working, I’ll do that. I’ll lay rest on top of demands that I’m already doing to make the moment 2 % better. Even little 30 second, 60 second nervous system breaks to take a cleansing breath, to help activate our parasympathetic nervous system, to tell our body you’re not actually in danger right now, those add up over time the narratives we tell ourselves, if we’re telling ourselves, I’m a crap parent right now because my kid wants this and I don’t have energy for it, that narrative is actually activating that sympathetic nervous system. And so even addressing, and not because it’s like all in our minds, but because the narratives we tell ourselves either help signals to our body that we’re safe or that we’re in danger, and that impacts the nervous system, which impacts burnout. So there’s a lot of little adjustments from thinking through how to build in more nervous system supports into our day to how we talk about ourselves, about our parenting, about ourselves in general, that add up over time.

Debbie:

Yeah, that was so helpful. Thank you for sharing all of those. yeah, mean, first of all, we’re running along and I want to be respectful of your time. So we’re not going to go into all of my questions, but I just want to acknowledge that there’s so many really helpful concepts that you share in the workbook. You go into spoon theory, which is just such a helpful way to think about your energy management, both for the adults reading the book, but also to introduce that language to kids because it’s visual and it seems like it’s something they could really relate to. You explain the stress cycle, you have a chapter on masking and burnout. So there’s so much in here. And I’m just wondering, is there anything before we wrap up, anything that we didn’t touch upon that you think would be really important for my listeners to know about, whether it’s about autistic burnout in general or something you’re really hoping your book kind of does in the world?

Dr. Megan Anna Neff:

I think, so one thing, this will be an itchy thought if I don’t say it. So I don’t know that it’s like the most impactful thing, but just to clear out my itchy thoughts is that there can be a temptation to want to be like, well, is it this or is it that? Like, is it autistic burnout or is it a health issue? Autistic burnout is an umbrella term to name these experiences, but there’s a lot that feeds into that, a lot of unique drivers and often there can be some health conditions in the mix. You know, there’s actually a really interesting article that came out recently around autistic children and neurodivergent children, it might’ve been autistic and ADHD, and health conditions and chronic fatigue. so, that’s part of my, a complex journey for me. I know like there’s long COVID in the mix, there’s what I suspect is chronic fatigue syndrome. So, one thing I do like to encourage folks is don’t just assume it’s autistic burnout and be like, well, this is autistic burnout done. There might be health things in the mix. We know autistic people are more vulnerable to all kinds of health conditions. A lot of them, unfortunately, are also easily missed and hard to catch. But ruling out medical conditions that are also driving the burnout, I think is really important. And the thing I worry about my work and the conversation on autistic burnout is that it closes curiosity to maybe there’s actually some biological vulnerabilities that are happening here too. And so I think that would be one thing I just want to be sure and include in the conversation is to consider if there are medical pieces in the mix.

Debbie:

I’m so glad that you mentioned that. And I know in your book, you reference Dr. Mel Houser’s work and I actually had pulled out a quote in my little notes for this Mel Houser’s spectrum of chronic conditions, which she calls All the Things often mirror the symptoms of autistic burnout, making differentiating them challenging. And listeners, I’ve had Mel on the show. She has a wonderful organization called All Brains Belong and she’s doing such fascinating work and looking at all of the medical conditions that are pervasive in neurodivergent folks. I don’t know if pervasive is the right word, that are common in the experience of neurodivergent people and are often missed. They’re all the things, right? So I appreciate you saying that. 

So I’m going to just name your book one last time because I’m really going to encourage folks to to check it out. It’s such a helpful resource if you’re navigating this in your life. It’s called the Autistic Burnout Workbook: Your Guide to Your Personal Recovery Plan. And I’m going to mention also, I can see it behind you. I’m looking at you on camera. You have Self-Care for Autistic People in the background too, which is also, I lent my copy to somebody here, but it’s also just such a wonderful resource. I will have links. I won’t ask you to name all the places, listeners. I will have links to all the places that you can connect with Meg and Anna on Instagram, NeuroDivergent Insights to the NeuroDivergent Conversations podcast, all the places. And I really encourage you to check out her work. Is there anything you want to say before we say goodbye?

Dr. Megan Anna Neff:

Thank you for this conversation. I obviously feel like this is a really important thing for us to understand about ourselves and our children. So thank you for spending time on this topic.