It Turns Out I'm Autistic
I recently had an Autism assessment and learned that I am in fact Autistic.
In this episode I discuss what led me to pursue an Autism assessment, how I've been feeling since having my Autism confirmed, and what this has to do with my PMDD and this podcast.
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Title: It Turns Out I'm Autistic
Episode number: 22
Date: 09.20.24
URL: https://mindfulnessforpmdd.buzzsprout.com/2253562/episodes/15784389-it-turns-out-i-m-autistic
Solo episode: Diane is the only speaker
EXCERPT (00:00:00)
This is how I felt my whole life with different diagnoses, whether it's depression, anxiety, what have you. It felt like, oh, okay, this makes sense, but there's still something unaddressed here. And even as I learned new tools and new skills and new ways to manage my PTSD or my PMDD, and even as those skills and tools were things that I was able to apply to other areas of my life, it still felt like this is not quite enough. This is not addressing other things that I have experienced my whole life. And so I've felt like I've been on this freaking life journey of trying to understand myself and trying to understand what it is that I've been experiencing, that no diagnosis has been able to encapsulate.
INTRO (00:00:58)
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 (00:01:50)
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.
SAYING OUT LOUD THAT I'M AUTISTIC (00:02:06)
Hi, friends. Today's episode is going to be a little bit different because normally I work from a little bit of a script, I guess, or outline, because if I just kind of riff and just go off the ideas in my head, I will never get to where I'm going and I won't articulate myself quite the way I want to. But today I have something I want to share, which is a little more personal than usual. And I do feel like the best way to share it is to kind of just talk it out.
This isn't like bad news or horrific news. It's just something that I have to talk out more than write a script for. I do have notes, but it's more just kind of like to guide me through. And basically, a couple of weeks ago, I learned that I am, in fact, autistic.
And so I want to talk about that today, but I want to say before I jump in that I'm not an expert on autism. I can only share my own experience, and I am very much still processing and kind of looking back through my memories of my life and my experiences of my life. So this isn't kind of like an overall commentary on autism or late adult diagnosis. It's very, very much just me sharing my own experience.
And I am going to share how it relates to my PMDD, and I will continue talking about PMDD as I continue with this podcast, but I can't separate the two. So I will be talking about my PMDD and my autistic traits and how they affect each other.
WHEN THE BOOKS FELT LIKE THEY WERE TALKING ABOUT ME (00:05:00)
I had wondered for the past few years, I guess, whether I might be autistic. And then finally, a conversation with someone, someone who I know, someone who I work with, lit a fire in me to start doing more research and simultaneously — well, I was going to say simultaneously pursue an autism assessment and start reading books about autism. But actually even before that, I started doing a bunch of online assessments just to kind of, I don't know, give me the courage to pursue an autism assessment and not feel like I was just, you know, pulling this out of nowhere.
An interesting thing when I started reading books on autism, specifically Aspergirls by Rudy Simone and Unmasking Autism by Devon Price, is that as I read these books, I kept feeling and literally exclaiming out loud, this is insane. It feels like they are talking about me. It feels like someone's been looking over my shoulder my whole life and just documenting everything that I've been feeling and experiencing.
It felt like a good 98 percent of what I had read was pulled directly from my life experiences. My entire life, I had felt out of place absolutely everywhere, even with my own family. And also, like the regular movements and responsibilities and tasks of daily life and the transitions into different life stages felt like they were so much harder for me than they appeared to be for other people.
And I also felt very sensitive to absolutely everything and very, I don't know, antisocial, withdrawn, introverted, anxious. All these things felt like they kind of described what I was going through, but also didn't. And even as I felt all these things, I still craved connection with other human beings because I am still a human being, but connecting with other people and engaging with other people was very, very challenging. Even with people that I liked and wanted to engage with and wanted to get to know better and wanted to have a connection with.
WHY PMDD NEVER FELT LIKE THE WHOLE STORY (00:08:15)
I've also wondered why some of my PMDD symptoms seemed way more intense than those of others that I'd spoken to in my personal life and in support groups. And why some of the symptoms I was experiencing weren't necessarily the PMDD symptoms that are, like, highlighted in lists of PMDD symptoms or not at the forefront of lists of PMDD symptoms that are highlighted by, like, major medical and mental health organizations.
So seven and a half years ago, I became a mom, which was a wonderful, beautiful thing. And I also entered a chapter of my life that has consisted of PTSD, a PMDD diagnosis. Then COVID-19 came along and we were all affected by that. Then our family, my husband, my partner, my son, and I, had an international move from London back to the United States. And after that, I had this insane period of feeling absolutely crushed by PMDD, even in the follicular phase, which I now suspect was a period of autistic burnout.
And ever since then, I have felt like I just have never been able to fully get back on my feet. Even as I have gone through periods of being able to manage my PMDD really well and have been able to re-engage in life so much and get so much of myself back, it just felt like, ugh, there's something that's not being addressed here.
This is how I felt my whole life with different diagnoses, whether it's depression, anxiety, what have you. It felt like, oh, okay, this makes sense, but there's still something unaddressed here. And even as I learned new tools and new skills and new ways to manage my PTSD or my PMDD, and even as those skills and tools were things that I was able to apply to other areas of my life, it still felt like this is not quite enough. This is not addressing other things that I have experienced my whole life.
And so I've felt like I've been on this freaking life journey of trying to understand myself and trying to understand what it is that I've been experiencing, that no diagnosis has been able to encapsulate.
MASKING, BURNOUT, AND PUSHING PAST MY CAPACITY (00:11:51)
Before having my son, I had a very active life of working, going back to school while still working, volunteering, changing careers, traveling, socializing. But as I look back, I worked very intensely to make that work and to keep myself held together and to keep presenting myself as a person who was comfortable moving through the world and engaging with others in these ways. And I was aware of that to some extent even as I was doing it. Also didn't realize the full impact, the full effect it was having on me.
And of course the truth is that I was masking heavily and would pay the price with exhaustion. I had so many migraines, to the point that I had a period of time where I had something like 30 days of migraines in a row. I've had bouts of depression, meltdowns, burnout, periods of time where I just didn't know how I was going to get up and do the next day.
Even if it wasn't depression, even when I felt, I know what depression feels like, this isn't it, I still felt like, I don't know how I'm going to keep doing this. I don't know how I'm going to get up and just keep going through all the tasks of the next day. And now I understand that I was just like working way beyond my capacity and also probably going through seasons of burnout, autistic burnout. I realize this now.
And my whole life I've been trying to understand myself and I've been searching for a reason for why I felt this way. And when I finally recently went ahead and pursued an autism assessment, I think it was in part because I felt like I had just hit a wall. I couldn't carry on any further, not in the way I had been. I felt like something was wrong. And of course now I know that something wasn't wrong, but that there was a huge part of me that I didn't understand and wasn't addressing and that I was just way beyond my capacity.
But I felt like I was doing something wrong. I felt like I wasn't working toward my potential, wasn't pushing hard enough. When in fact, I was pushing myself too much to do things that just aren't the right thing for me, pushing myself too much in ways that were causing more harm than good.
THE RELIEF AND NUMBNESS OF FINALLY HAVING AN ANSWER (00:15:27)
I now realize that I was forcing myself to move through the world in a way that simply doesn't work for me, which is why even just going through the motions of like a regular Tuesday, for example, was often so overwhelming and so exhausting. And which is why even when I was doing something that I kind of wanted to do and that did not give me true anxiety, I still had this feeling of dread and this feeling of understanding that this probably wasn't the thing I really should be doing.
And I still had such a crushing exhaustion afterward and such a huge need for like repair and restoration and re-energizing myself afterward.
But of course, when I started to suspect that I might be autistic, it wasn't enough for me to just believe that for myself. And there's a lot of discourse, there's a lot of conversation out there about self-diagnosis and that it's right for some people, that it doesn't feel right for others, you know. And for me, I felt like I just wasn't able to convince myself to give myself the space and compassion that I needed without a formal diagnosis.
And that sucks, that, you know, I would love to be able to say that I could just give myself the compassion that I needed. But I felt like I needed to hear it from someone else first, and that's not something that is accessible to everyone. And I was lucky that I did have the ability to go find someone to provide an autism assessment. And I found it somewhat quickly and it wasn't prohibitively expensive, or you know, I just couldn't do it for financial reasons. I'm very lucky for all those reasons.
And I have found a certain sense of peace as a result. And already, like I said, this was just like a few weeks ago, a month ago, already I can feel myself not expecting myself to do so many of the things that don't work for my brain, don't make me feel good, that are way outside of my capacity.
That said, I also feel kind of numb, and I think that's because, like I said, I'm probably in a constant state of trying to process this new information. I've got 43 years of life to look back at with fresh eyes, so I'm sure I'll be processing for a long time. But in addition, like I said, I am definitely someone who was masking a ton, which as I've learned is not uncommon for someone who received a diagnosis late in life or relatively late in life.
And now that I have this new understanding of myself and an understanding of masking and how I myself have been masking, I guess now I'm in this other process too of catching myself when I'm doing it, of actively trying not to do it, of actively, in a moment, in a given moment, like, deciding whether I'm going to do it or not do it. You know, it's like I'm watching myself now move through my days, move through my life. And so there's like this lag, I guess, between my brain and my actions as I watch myself and see myself and my actions and my thought processing in different ways. So there's like a numbness. It's the only way I can describe it. It's like a numbness that I feel.
But I'm so glad that I got my assessment. I feel so much better now knowing that I am in fact autistic. I wasn't making it up. I wasn't making it all up. I wasn't just being too sensitive. And it is the first time in my life that a diagnosis really has seemed like the missing puzzle piece. It doesn't feel like I still need to continue searching for the answer, which is a huge relief.
MOVING FORWARD WITHOUT COVERING UP WHO I AM (00:21:36)
There's so much more I want to share here about my plans for moving forward and about how my autism affects my PMDD. I would love to share about what my own autistic traits look like, maybe what my assessment was like. I don't know. I feel like there's so much already that I could share about and plenty of things I would like to share about.
But for now, for today, I kind of just wanted to put this out there more for myself than anything, because moving forward, I just need to be me without all the masking up and covering up and pretending. And that includes bringing my full self to this podcast, especially since, as I mentioned, I cannot separate my autistic traits from my PMDD. They do affect each other. They do exacerbate each other.
So I hope you'll stick with me. And I also hope that this helps someone else, because when I was looking for personal stories of other people's experiences, I just could not find enough, especially not those of other late-diagnosed people, especially not enough stories of people who are also moms and definitely not enough stories from people who experienced both autism and PMDD.
So here I am, and I hope you'll continue with me on this ride. And again, I really just want to end this by saying, like, I am not an expert on autism. I am not here to be a medical or, you know, resource on autism. I am not here to give you, I don't know, like these definitive facts or something. All I can do is give you insight into my own personal experience.
And you know, I've also learned in this process that there is a saying, it's a quote. And in fact, I don't know right now who it comes from. In fact, I'm going to look it up and just say it instead of just adding it into the show notes because I think it's important.
Okay. So the quote comes from a Dr. Stephen Shore, who once said, "When you meet one person with autism, you've met one person with autism." Meaning everyone's autistic experience is unique, is individual to that person. And we cannot just kind of apply generalizations of autism to every single person with autism. And so, as I said, all I can do is share my experience in the hope that it helps someone else.
And also because I think it's important to sharing my PMDD story and to sharing about perhaps a little insight about what it might look like for someone who maybe is autistic and has PMDD or PME. I mean, there's a question right there. If you've got PMDD, you know, I did the episode before this was about bipolar and PMDD, and I learned that there are a lot of combinations you can have. You can have bipolar and PMDD. You can have bipolar and premenstrual exacerbation of bipolar, but without having PMDD.
So we've got a lot to unpack now, I suppose, with autism and PMDD and/or PME — premenstrual exacerbation of an existing condition. Right. So, so much to learn here. And that's why I think it's important for me to share this new discovery I've had about myself.
Okay. But for today, that's it. I'm going to leave it here. Cause like I said, I'm myself, I'm doing so much processing. I'm a little bit numb and I really just want to be able to move forward in this podcast, just being my full self, showing up as my full self. I hope it helps someone. Thank you to those of you who made it this far in this episode and who are here to join me on the ride. I will catch you in the next one.
OUTRO (00:26:56)
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.
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.
