Autistic Burnout: What It Has Been Like
Last month, I shared that I recently learned I'm Autistic. This month I'm talking about the autistic burnout I've been in since the summer. Specifically:
What triggered autistic burnout
The first signs I was in burnout
How I realized I was in autistic burnout and had it confirmed
How autistic burnout came on just before my autism assessment
The symptoms of autistic burnout I'm experiencing
What I'm doing to help myself through burnout
How my burnout, autism, and PMDD affect each other
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Autistic Burnout: What It Has Been Like
Episode number: 24
Date: 10/18/24
Solo episode: Diane is the only speaker
EXCERPT (00:00)
I walked into the cabin and I just couldn't move. I couldn't think. I couldn't function. I sat down on the bed and just glitched, is the only way I can describe it. My mom found me there some minutes later. I don't know how long I was sitting there like that. She helped me figure out what I was doing, but that was the first of many times this past summer that I just completely stopped functioning.
I just powered down, staring into space. I could no longer think or plan or process or move.
INTRO (00:49)
If you want to learn how you can live better with PMDD, this podcast was created for you. This is Mindfulness for PMDD with Diane. I'm Diane and I'm a registered dietitian and lactation consultant. I'm also a mom, a PMDD warrior, and a trauma-informed mindfulness teacher. And this is where I discuss topics related to PMDD through the lens of mindfulness and meditation, and where I share all about how mindfulness has gotten me to a place of greater peace and acceptance with my PMDD.
I also chat with people who have helped and inspired me along the way, so they can share their wisdom with you too. So let's get started.
SAFETY NOTE / DISCLAIMER (01:40)
This podcast is not a substitute for psychological therapy or medical advice. Please take care when listening to this podcast, as some may find certain words or subjects triggering or difficult to hear. Take only what serves you and leave the rest behind.
WHAT AUTISTIC BURNOUT HAS FELT LIKE (01:57)
So in my last solo episode, I talked about how I recently learned that I am autistic. And this week I wanted to talk about autistic burnout, because I also found out at the same time, or had it confirmed, that I was in autistic burnout at the time of my last diagnosis. And I continue to be in autistic burnout now, although I'm definitely moving my way through it and in a much better place than I was this past summer.
And so I want to talk about that today: what burnout has been like for me, how it kind of kicked off, and how I discovered it was burnout. Because, and I said this in my last solo episode, but I feel like when I was beginning to wonder if I might be autistic, I was looking for lots more real stories, like people's experiences. And since I couldn't find enough of that when I was searching for it, what I want to do now is share my version of what it is I was looking for: my experience.
THE SUMMER TRANSITION THAT PUSHED ME PAST MY LIMITS (03:31)
So I have been in burnout since this summer. I'm recording this in October 2024, and I've been in burnout since about June or July. I'll get into exactly what that has meant to me, but the background info to know is that I started looking into getting an autism assessment around late spring.
That process was taking a little while, the process of finding people who can do the assessment, who have experience with females and people assigned female at birth, and specifically late diagnoses, and also people who maybe could take FSA/HSA. Insurance coverage for an autism assessment is not super common or readily available, not super easy to find, but some people do take FSA/HSA.
And as we moved into summer, and as I got an assessment actually scheduled, at that point I began to ease up on all the research on autism that I had been doing and shifted my focus into preparing for summer and then getting ourselves settled. We live in Austin now, but we spend summer in New York, which is where we're from. And so there's a big transition period of tying up loose ends in Austin, getting ourselves packed, flying to New York, and then getting settled in a new space and a new routine in New York. And this can take a couple of weeks, which can be grueling because I thrive on routine and consistency.
Looking back now, I realized that I would find ways, even back when it was just my husband and me traveling, to build a routine and consistency into trips, whether that be getting our coffee from the same exact spot every morning or building in themes like, we have to hit a sporting event at each trip or each stop.
Anyhow, for whatever reason, this past summer I struggled to get us into a good routine and really get myself into a good routine, right? And to get myself feeling settled quickly enough. We started out in a hotel before moving into our space for the summer. And then there were a couple of road trips in the first few weekends and lots of family catch-up time overall, like throughout the summer.
Now, I realized pretty early on that living out of suitcases for a while and adjusting to lots of different places was already taking a toll on me.
WHEN I COULDN'T MOVE, THINK, OR FUNCTION (07:00)
And then there was a big family camping trip with maybe upwards of 25 people, and I was overwhelmed. It didn't matter that this was family and close friends. This was intense and overwhelming. Add to this that it rained, everything was wet, muddy, noisy, my things weren't in convenient, accessible places, and I was just slowly unraveling.
I remember at one point my son was at the central cooking and eating and socializing area in the middle of all the campsites that my family had. He was eating dinner. I was feeling too scattered and overwhelmed to prepare myself anything yet, and I needed to run back to our cabin to get him something we'd forgotten, right? A drink or something.
And I walked into the cabin and I just couldn't move. I couldn't think. I couldn't function. I sat down on the bed and just glitched, is the only way I can describe it. My mom found me there some minutes later. I don't know how long I was sitting there like that. She helped me figure out what I was doing, but that was the first of many times this past summer that I just completely stopped functioning.
I just powered down, staring into space. I could no longer think or plan or process or move.
WHY GATHERINGS HAVE ALWAYS FELT LIKE TOO MUCH (08:49)
And on that trip, I thought a lot about how family gatherings were always, in a way, dissatisfying for me, for as long as I can remember, and a source of anxiety. Because even though it was family and friends and people I love, and people I do want to be around and spend time with, it was still too much noise, too much activity, too many people, too much having lots of light conversation all around.
Too much joking around. Too much talking about things I couldn't relate to, right? I've never done well with just making light conversation. The little jokes that people make with each other when they feel close with each other. And there's so much throughout my whole life, or so many times, I just have felt like I just don't get it. I don't understand why people like what they like and are interested in what they're interested in and do what they do. I just don't get it.
So gatherings like that, parties or just big social family gatherings, were always very hard for me. And then add onto that the fact that I have a tremendous family. And so it would just be sensory overload. This has always been an issue for me.
Around this time, I also reflected on the fact that I had developed this habit and maybe also a stim, in a way, because I'm using it to regulate myself, right? But basically what I do if I'm in a large group of people, if I'm at a party, if I'm at some kind of gathering, if I'm at some sort of conference, if I'm at a wedding, what I end up doing is walking around the room. In this case, it was a campsite this summer, but I just kind of start walking around the room and I just keep moving.
I kind of say, like, I'm like a shark, and I just keep moving. I can't really stop moving, and I'm sort of pacing around or making circles around the room. And I don't know if I'm successful at this, but in my head, maybe it makes me look like I'm still engaging with people and moving around from group to group, talking with this person, talking with that person. Because I do stop here and there, right? And say hi, or kind of pretend like I'm getting involved in the conversation before moving on again.
And so I'm trying to make my presence known. Again, I don't know how successful I am at this, but in my mind, this is what I'm doing. It's like trying to participate in the event without actually having to engage.
WHEN BURNOUT DIDN'T LIFT AFTER THE TRIP (12:42)
Anyway, I somehow made it through that camping trip, and I managed to drive myself and my son and our dog back to New York. My mom had come on the drive with us to the campgrounds. Thank goodness I had her support for that because I was really overwhelmed at the amount of driving I had to do to get there.
When we came back, she wasn't with us. But we did meet up with my husband about halfway back to where we stay in New York. And so, thankfully, there were no big issues or meltdowns for any of us in the car on the way to meet with my husband after a couple hours' drive.
So made it back. But here's the thing: after that camping trip, I was never able to recover. Remember, looking back, I now see that this all kind of started creeping in before the camping trip, where it was just too much. Not getting into a groove for me, living out of suitcases, taking all these little side trips, seeing lots of different people, that had already been a lot. That was already pushing me to my edge. The camping trip pushed me to this place that felt like a point of no return. It felt like I wasn't going to survive that.
And then after that camping trip, it felt like I was never able to recover. And what I mean by that is, one, technically, here we are in October, and like I said, I still feel like I'm still in burnout, even though it's much better. But at that time, in summer, coming out of that camping trip, it was just horrific for the whole rest of summer.
It was feeling this crushing exhaustion, and like I had to rest all the time. It was having meltdowns. It was feeling like I couldn't communicate what was happening to me, so I would just kind of melt down, like lash out. It was also shutting down and going internally and not being able to speak at all or connect at all. It was suddenly finding myself unable to think, plan, read, study, write, or process any sort of information.
It was even so that not only could I not work, but I couldn't even do the things that I enjoy, like knitting, reading, even listening to an audio book or watching TV was too much. Any amount of information coming in was too much information to process. I've been learning to crochet. I do that to these video tutorials. That was too much information to take in and follow along. That's usually a happy place for me, right? That's usually a relaxing activity, a grounding activity. No, couldn't do that. Knitting, I can do without videos and without even much referencing of a pattern. Could not do that. That was way too much. It was all too much. I basically could only just stare into space or sleep.
Now, remember, I'm a mom, so I had to keep going somehow and to some extent. Thankfully, my son was in summer camp, and I'd try to rest while he was actively in camp each day. But it totally started to feel like my body and my brain had shut down on me. That they were demanding that I stop, which I guess really is what was happening, right? I think that really is just what burnout is.
It was even more than all that, though. I lost my words. So I either lost access to words entirely, or I would switch words out. So I kept saying, for example, ice instead of glass. And it was scary.
EMAIL LIST NOTE (17:20)
Hey, PMDD friend. If you want to be the first to know when a new episode is coming out, head to the show notes to join the Mindfulness for PMDD email list. I'll send you a heads up when I've scheduled a new episode to be published. I'll also give you sneak peeks at topics I'm working on and guests that I've booked. And maybe you can even submit your requests and suggestions for upcoming episodes. Get on the list of the show notes below this episode.
WHEN I KNEW THIS WASN'T JUST PMDD (17:46)
This part is really important. This was happening outside of PMDD, meaning this was happening outside of the luteal phase. I was certain of it once we got to about six to seven straight weeks of this. And I guess when I say this is really important, what I mean is, at the time, that was very important to me in terms of showing me that this, in fact, was something different from PMDD, because remember, I had not yet had my autism assessment at this time.
Now, I remember I had already been researching autism prior to the summer and I was awaiting an assessment, but I hadn't had my assessment yet while all this was happening. And I had heard a little bit about autistic burnout. So when this was happening and when it was getting really bad and freaking me out, I went back to try to understand more about autistic burnout.
Again, reading or even listening to audio or watching a video were near impossible, but I was so desperate to understand what was happening to me that I did my best. And one of the things that stuck out to me was I managed to find something that really clearly laid out possible symptoms. I think it was bulleted and/or an infographic, something that made it easier, not easy, but easier to take in the information. And having this information about what burnout can look like, I began to think for sure that this was what I was experiencing.
And intuitively, I felt like it was coming from an inability to have my routines, my consistency, my safe spaces, my quiet alone time that I need, and my things that make me happy, including what I now know is called special interests. I was not able to really immerse myself in my special interests and the things that make me feel safe and happy for far too long at one stretch.
And oh my gosh, the socializing. Our neighbors would sit outside every day, gathered together in a group, chatting. It looked very lovely for them, and they're all very lovely people. But the thing is, it felt like they were always there whenever we'd come and go. In the afternoons anyway, not so much in the morning time, but this was every afternoon. And so it felt like, to me, it felt like a confrontation almost, like a crossing of boundaries to always have people sitting right there, kind of saying hello or wanting to make some small talk right by the threshold of my safe space.
I had to talk to people in order to reach my sanctuary. And if I didn't want to talk to people, I had to find a way to just kind of, you know, put on a smile, maybe do a quick wave, put my head down, run up to the door. There's sort of like a back way I can go around to our back door. So often I would make it look like I needed to go the back way for some reason, even though they'd already seen me. You park on the front side, they can see me from where I've parked, but I might go around the back way because I just can't do it.
I don't know if that makes any sense, but that's what it was. It felt like in order to reach the place that I feel safe, I had to still conquer this obstacle of having a group of people who I felt like I needed to say hi to, make small talk with. If I try to pass them and not do it, they might try to engage with me, and that felt like too much. It felt almost like some weird video game or something.
COMING HOME, GETTING CONFIRMATION, AND STARTING TO REST (22:35)
Basically, by the end of summer, I had gotten to a point where my physical, mental, and cognitive symptoms were so severe that, like I said, I wondered if I'd ever come out of it. It felt like some new state I had entered into that felt permanent. And if I did come out of it, when was that going to be? And how was that going to happen? Because it just felt impossible that I should be able to come out of this new state.
Eventually, summer in New York came to a close. I didn't think I could survive the flight back to Austin, including just the whole experience of the airport and the sensory shit show that that is. But I did. I survived. And as soon as we got back home, this was so interesting, I felt this immediate shift. I did not feel better, but I felt the possibility of better and the potential for better. I could see the path to better, which was to get back to my routine, to my safe space, to the things that make me happy.
Shortly after we got back to Austin, I did have my assessment. And not only was autism confirmed, but my assessor also confirmed that I was, in fact, in autistic burnout. Actually, it wasn't so much a confirmation because I don't think I asked. I think I described what I was experiencing at present at the time of the assessment. And this person said, yeah, burnout. You know.
And they confirmed what I had learned, which is that I really needed to rest. And that the next step was to find it within myself, or see if I could find it within myself, to be okay giving myself what I need. To say no to the things that don't work for me and my brain, even if these things are things that are expected by society in general, or by my own social network or own family.
So I've been resting. I plan my days with a maximum of like one to two things to accomplish. And I feel like I need to say that it's not lost on me that I am really fortunate and privileged to be able to do that. To be able to go, hey, look, this is what I'm doing right now. This is what I'm focusing on, is just resting. And don't look to me to get anything more than like one to two things done on any given day. That's not something that everyone can do.
But slowly I've been getting my energy back, my ability to read or to talk to people, to plan. I have been able to knit, build furniture, plan a trip. So I'm coming back.
HOW BURNOUT AND PMDD SEEM TO AMPLIFY EACH OTHER (26:44)
But I do avoid a lot of social interaction and sensory stimuli. I mean, a lot. I just draw a hard line where I have to. I've said no to parties and gatherings. I left a doctor's office recently after waiting like 50 minutes in a chilly room where I was smelling all kinds of perfume, and people were sitting far too near to me and having all these side conversations, and I was still not being called back to be seen. I just had to leave.
I have noticed that PMDD and the luteal phase worsen my autistic traits. I've also noticed that burnout worsens all of it. Burnout worsens the luteal phase and the PMDD symptoms and the autistic traits. I feel very, very raw, very sensitive, like my nerves are raw, like my brain is literally exposed during the last five or so days before my period. And within, I would say, the first three days of my period, it is especially bad. Everything's just super heightened.
I'm nesting as much as possible, you know, as best that I can, as much as I can while still being the primary parent and the keeper of the home and the manager of the life admin. And I still feel the effects of burnout.
And recently, you know, it's not perfect. Recently I thought I was feeling better enough for us to have this tiny little road trip side trip, not too far from here, just for some hiking and stargazing. And yeah, I mean, I guess I shoulda, coulda, woulda known that doing this trip while still in burnout and in the last few days leading up to my period probably wouldn't be a good idea. I still planned it. We still went. And yeah, you know, it was kind of rough at times. It was raw.
I'm still physically tired earlier in the day, most days. And I'm just done engaging with people or accepting sensory stimuli into my life so much sooner than I would have been in the past. Meaning, when I do engage, or when I do kind of allow myself to be in an environment that has a lot of sensory stimulus, it hits me. I feel it so much sooner, or maybe the intensity is so much worse than in the past. I don't know if I'm explaining that good.
But I'm coming out of it. I'm coming out of burnout slowly. I can feel that this burnout that started back in June or July was horrific and super intense back then. Now it's October. It's still there, but it's so much better. I will get out of it. You know, we're coming along.
OUTRO (30:00)
So that's what I wanted to share. That's been my experience of autistic burnout, and I felt like I didn't have enough stories like these to help me get a better sense of what that experience might look like, whether or not I felt like I could relate to it at all. So I'm wanting to share stuff like this now in the hopes that it can help someone else.
So that's it for now. The next episode I plan to post another one of my interview episodes where I interview an expert on a subject related to PMDD. But after that, for right now anyway, I feel like my solocasts will focus on subjects related to my experiences as a late-diagnosed autistic person, and probably will also include how my PMDD is related to it.
Thank you so much for listening. There's a link in the show notes if you want to be in touch, and I will talk to you soon.
Thank you so much for listening. If you liked the show, please subscribe wherever you get your podcasts. For links to everything mentioned in this episode, you can check out the show notes and you can find me, Diane DeJesus, on Instagram @mindfulnessforpmdd. Now, I invite you to pause, take a breath, and look around.
