The Misdiagnosis Pipeline

Trigger Warning: This post briefly mentions self-harm and suicide.

I have been diagnosed with ADHD, bipolar disorder, MDD, GAD, OCPD, and PMDD. Oh, and I’m autistic. Collectively, that alphabet soup of a list isn’t a brag. It’s a warning label about what happens when the medical system doesn’t see the forest through the trees. It’s a cautionary tale of how many wrong turns a person can take when nobody knows how to look at the whole picture.

Let’s start at the beginning.

The Five-Year-Old Twirler

I was five years old when I was diagnosed with ADHD combined type. Couldn’t focus, couldn’t sit still, stood up randomly to twirl at my desk then sat back down like nothing happened. The diagnosis is right but incomplete. I was put on Ritalin immediately. But the Ritalin didn’t “fix” the rest of me. It didn’t fix the fact that I had a violent hatred for certain fabrics like wool, or that I flat-out refused to wear pants until middle school because anything constraining made my skin crawl. It didn’t matter if it was freezing outside; I was wearing a skirt or shorts. To this day, if a shirt collar or a turtleneck touches my neck, my brain goes into immediate fight-or-flight.

I also didn’t just play; I collected. I read the dictionary for fun. Words became my hyperfixation. They had specific, rigid meanings, and they had textures. Some words were fun to say, like lackadaisical. Others felt physically hideous and disconcerting, like the word c*nt. I can cuss like a sailor, but that word is an absolute crime against my sensibilities. Can’t even stand it in writing. So gross. 

I wasn’t just a hyper kid; I was a little girl trying to categorize and survive a world that felt entirely too loud and abrasive.

By high school, I refused to take the meds. I questioned if I even had ADHD at all back then and because I didn’t trust the people giving it to me. I was positive my parents just wanted to shut me up. So I stopped. And I struggled. Hard. But it wasn’t because I lacked the Ritalin. That era was when my PMDD really began violently messing with my system (not that anyone would actually diagnose me with it until I did it myself about six years ago). I also heavily spiraled into OCPD traits here; looking back, that rigid perfectionism was my desperate way of trying to control what little in my chaotic life I actually could control. Still, the depression grew severe. I hurt myself on the regular, and tried to take my own life more than once.

Adult Diagnostic Bingo

Fast forward to adulthood. After my first child, I had severe postpartum depression, but it never really went away. So I started seeing a therapist and was eventually diagnosed with bipolar disorder. And I thought okay, that explains some things. Except it didn’t, not really. The pieces still didn’t quite fit. Eventually, that diagnosis was corrected to MDD, GAD, and OCPD. Major depressive disorder, generalized anxiety disorder, and obsessive-compulsive personality disorder, a whole perfectionism personality. 

I remember the intense perfectionism from high school vividly. Every assignment had to be written in pen. No white-out allowed, that was ugly. So if I made a mistake, even on the back of the page and the very last line, I started over. Completely. Every single time.

Looking back, that wasn’t just a personality quirk. It was an autistic need for absolute control and predictability. I had one specific pen. If the ink didn’t glide exactly right, my brain short-circuited. (Honestly, I’m still like this with my bullet journal today).

A Walking Ball of Sensory Contradictions

When I was a girl, I had a favorite tree I would spend hours a day in; I read books up there, ate my lunch, painted my nails, and basically lived in it. But I insisted on doing all of it in pretty, lacy, twirly dresses. 

Decades later, as a volunteer field biologist, I’d spend weeks hiking chest-deep through wetlands in muddy cargo pants, eating lunch with dirt on my hands, and then spend the rest of my time in full 50s-style dresses, heels, and hair I had actually put real energy into styling. I didn’t know how to just “be” a person; I curated characters to match my environments.

Then PMDD was added to the stack, and boy howdy did this one click (another one I figured out for myself, by the way). Premenstrual dysphoria disorder is basically PMS on steroids. In other words, I lose my absolute shit based on my hormone levels. Very reminiscent of pregnancy hormonal fluctuations: you’re sad, you’re livid, you’re laughing so hard you’re crying, all in the span of 5 minutes. So fun to be me.

Anywho, so there I was. MDD, GAD, OCPD, PMDD — which, by the way, explains a significant chunk of what was being called MDD, but that’s a whole other post. A diagnosis list that looked complete on paper but still left the picture looking wrong. Like a puzzle where all the pieces sort of fit but the edges don’t match.

Looking Away to Form Words

I even brought it to my therapist once. I’d noticed a pattern, when I was listening to her I made eye contact, but when I was talking I looked away. It had been nagging at me, so I asked her: “Isn’t that a sign of autism?” She told me no. A sign of autism is not being able to make eye contact at all. So I went home and looked it up myself. Turns out, for highly masked autistics, that’s exactly how it presents. Eye contact when listening because you’ve learned to force yourself to, looking away when speaking because forming words correctly requires heavy focus. I literally cannot look and form words at the same time. I brought that data back to her. She was still quite confident I did not have autism. 

That interaction was the exact moment the seed was planted. It took me another two or three years to fully untangle it, but that dismissive conversation was where I finally realized that if I wanted real answers, I was going to have to find them myself. It was the catalyst that forced me to realize self-diagnosis wasn’t just a valid option, for adult women left behind by the medical system, it’s often the only option.

Enter TikTok

Then I found TikTok. Yes, I know how that sounds, but hear me out. Creator after creator talking about their autism. Their lived experiences. The way their brains worked. And I kept thinking — wait. That’s me. That’s exactly me. Over and over and over again.

I started researching. Really researching. And the more I learned, the more the puzzle pieces rearranged themselves into something that finally, actually made sense:

• The OCPD? Probably autism.
• The MDD and GAD? Probably autism with a hearty helping of PMDD.
• The bipolar that was never quite right? Autism and ADHD.
• The ADHD that was correct but incomplete? AuDHD. Because it turns out autism and ADHD are basically best friends and show up together constantly. (In my head, they’re two entirely different people sharing a lease: Roxie has ADHD, and Bess has Autism. They do not agree on house rules).

Those “severe panic attacks” I’d been having for years? Not panic attacks. They were full-blown autistic meltdowns. I had spent years telling therapists and psychiatrists that during these episodes, I would rock back and forth, completely shut down, and lose the ability to speak. I could hear my husband trying to talk to me, but the bridge between my brain and my mouth was completely washed out. All I could do was chant “too much, too much” inside my own head. But sure, let’s keep calling it a panic attack because looking at a doctor while they speak apparently disqualifies you from having a neurodivergent brain. *rolls eyes*

The Flashlight Effect

Here’s the fun part: autism is commonly misdiagnosed as bipolar disorder. It’s also commonly misdiagnosed as the MDD/GAD/OCD combo. I got diagnosed with all of it. Of course I did.

I’m self-diagnosed autistic because getting a formal autism diagnosis as an adult woman is damn near impossible. It really wasn’t built for us. Hell, it’s not really built for girls either (but then what part of our world is?). And it definitely wasn’t built for people who spent decades learning to mask so well that even the people closest to them didn’t see it. Nor is it financially feasible for the majority of us. So I did the work myself. I researched, I reflected, I recognized myself, and I came to a conclusion I trust, even if I can’t get anyone to put it in a chart. That was its own journey, accepting a diagnosis I gave myself.

I take Ritalin now, by the way. As an adult, with a brain that has some understanding of what it actually is, it helps. The ADHD diagnosis wasn’t wrong. It was just never the whole picture. None of them were. Not really. They were all just different doctors holding different flashlights in a dark room, each one illuminating one small corner and calling it solved.

Anyone else take the misdiagnosis pipeline? Drop a comment below.

Keep going, folks.