Misunderstood and Misdiagnosed: How Autistic Burnout Shaped My Fertility Journey
On Autistic Burnout and Medical Gaslighting
A personal story of undiagnosed autism, silent burnout, and a body pushed past its limits—while the people meant to help looked the other way.
It was February 2021. My phone rings. I pick up only because it's my doctor with test results I’ve been eagerly waiting for. “Your body is shutting down” she says, in so many words. I reach for my blanket and wrap myself in its warmth. I’m freezing, and it's 80 degrees outside.
What is wrong with me? Why am I so tired? So cold? So achy? So… full of rage?
We had been trying to conceive for over 6 months. And while not that long in the grand scheme of the fertility world, at 38 years old, I felt my days were numbered. I was also convinced there was something wrong with me. This new motherhood thing just wasn't going as well for me as it seemed to be for the rest of the so-called “village”. But this was all in my head. Physically, and more importantly, measurably, I was experiencing what my doctor called “secondary amenorrhea”, which just meant I was not having menstrual cycles. She had the data to provide it, so I didn't have to do much convincing. Finally I had her attention.
“You have something called ‘Hypothalamic dysfunction’, which is when the HPO Axis is out of balance. Your body isn’t producing the hormones needed for a normal menstrual cycle, or conception. I'll send you some info. But, this is unusual and is often the result of intense bodily stress. Are you stressed out?”
“uh… of course I’m stressed out. I have a toddler.”
She laughed. “Yes, but that shouldn't cause this type of reaction”.
Well you don't know my toddler, I thought. That should have been my first clue.
She continued “Do you have any history of eating disorders? Are you doing anything extremely taxing on your body, like marathon training?”
Hmmm… I thought. I did hear once that being pregnant was the aerobic equivalent of marathon training every day for 9 months. Does that count?
sigh….
“No and no.” I answered.
“Hmm. I'll send you some info and order some more labs, and send a prescription for hormonal birth control to kickstart your cycles. Let's follow up in a month.”
Reading through the literature on the HPO axis and hypothalamic dysfunction sent me on a whirlwind of emotion.
Deep down I knew…
Autistic Burnout.
But I didn't have words for it yet.
Was my body shutting down or trying to avoid shutting down? Like when your phone goes into low power mode to conserve battery. All unimportant functions must cease. The screen becomes dimmer. The light fades…
Months prior I was on the phone with a different doctor - my PCP. “You might consider finding a good therapist. I’ll send you some referrals”. I hung up the phone and cried. I was tired. I was cold. I was aching. I was… full of rage. And I was trying to get to the bottom of it. “Postpartum depression” was my diagnosis. But I had already been there. I was already on the anti-depressants. I had already worn the t-shirt. It was thread-bare. “This is something else”, I told myself. I resolved to find a new PCP, someone who would actually take the time to listen, to be curious, to be on my side. Not an easy feat as it turns out. Patient self-advocacy’s a bitch. Sprinkle in a little self doubt. “Am I being a hypochondriac?”. Years of having your worries written off and your struggles diminished will do that to a person.
Around the same time, I had self diagnosed myself with Asherman’s Syndrome, “a rare condition where scar tissue, also called adhesions or intrauterine adhesions, builds up inside your uterus.” (hypochondriac much?) I would eventually need surgery to un-fuse my uterus if I ever hoped to become pregnant again, but no one believed me yet. Many a late-night-doctor-google-ing had already planted the seed of this condition in my head, and when I mentioned this to my doctor, I was quickly dismissed in the typical fashion a Type-A know-it-all doctor might dismiss a patient who dares to suggest something they hadn't thought of.
“I had the D&C (dilation & curettage) at delivery, remember?”. I spoke gently, doing my best not to sound like I thought I knew all the answers, as I always do when playing doctor. I had read that this procedure was a risk factor for developing Asherman’s, so naturally I connected the two.
“No, you didn't.” She responded sharply, in what felt like an attempt to invalidate my experience.
Well, I guess I was technically already “D’d” (dilated), I thought. So no need to perform that procedure manually. But I almost certainly was “C’d”. At least thats what it felt like as my uterus was being scraped like the inside of an avocado. Apparently this is what happens when the placenta doesn’t cooperate. But thats a story for another time.
It's a difficult place to be. When your well-being hangs in the balance — suspended between what is known and what is felt. But I have it. The intuition. The gut feeling. The pattern recognition. Call it what you will. It doesn't get you far with doctors.
“Its probably hormones.” she said dismissively. “We’ll run some tests and figure out whats going on”.
It would turn out to be both.
After we determined my “body was shutting down”, the next step was to try to get my period to start by force of medication. We were going to trick my body into thinking it had ovulated. It didn’t work. I took all the hormones. Nothing happened.
“Thats strange.” she mused in our followup call. Well, lets get you in office for an SIS (Saline Infusion Sonogram). This will enable to look at your uterus for any abnormalities.”
As it would turn out, the SIS would fail. My uterus was completely blocked shut by so much scar tissue that there was no way for the saline to even enter. If there were a sign outside , it most certainly read ‘Closed for Business’. Or ‘KEEP OUT! Area in disrepair.”
After this, I would be referred to a fertility specialist whose skillset was in surgery to remove this sort of thing. All went well. Uterus reopened for business. But this only solved the structural part of the issue.
There was still the issue of…my body shutting down. Why were my hormones all out of whack? Why was I always cold? Why wasn’t I ovulating? Why wasn’t I losing any baby weight? Why were my joints swelling up to the point I couldn’t place weight on my hands or even open a jar? Why was I so. fucking. tired?
I didn’t know I was autistic at the time. I just knew I was exhausted in a way that didn’t make sense. Motherhood was not as easy for me as it seemed to be for everyone else. Every task felt monumental. My baby crying made my skin crawl. I didn’t want to go anywhere or do anything, not even with favorite little person in the world. Everyday was a constant struggle to do “motherhood” right, to stay afloat while I was slowly drowning.
My body was shutting down, but I kept pushing forward because that’s what I’d always done—until I couldn’t anymore.
Now I know what I was experiencing had a name: autistic burnout.
It would be a number of years before I would know this term. But, this wasn’t the first time I knew this feeling. I had experienced something like this to varying degrees throughout my life. I just thought I was predisposed to always being sick and tired.
So What is Autistic Burnout?
Autistic burnout is a state of deep, prolonged exhaustion caused by the ongoing effort of navigating a world that isn’t built for your brain. It’s the toll of masking, people-pleasing, suppressing sensory needs, overcommitting, under-recovering, and constantly trying to “keep up” without support. For many late-diagnosed autistic adults—especially women and those socialized to be high-achieving—burnout becomes a slow, invisible collapse that can last for months or years.
Autistic burnout doesn’t happen because we’re fragile—it happens because we’ve been doing too much, for too long, in systems that don’t recognize our needs. The tragedy is not just in the burnout itself, but in how often it’s misunderstood—or completely dismissed—by the people we turn to for help.
Stay tuned to learn how I finally got someone to listen, got the care I needed, and powered on my system again.
Until then..
P.S.
If you want to know more about Autistic Burnout either for yourself or someone in your life, here are a few resources I found helpful on my journey.
https://neurodivergentinsights.com/autistic-burnout-vs-depression/
Another powerful and vulnerable piece! So proud of you. So. Mad. At. The. Medical. Community.