“If the brain’s default assuming is ‘I’m dying’, it will do any and everything to save you.”

When my Mother died when I was eight, I was shuffled into a psychologist’s office in short order-  adopted brown kid in a white area, dead mother– my father was no fool, he knew that I would need support.

The problem was, of course, the age in which I grew up. I was born in 1994 in the South, so our medicine and philosophies regarding mental illness (and wellness) were misinformed at best and deeply traumatic at their worst. Whilst I had sat and talked until I was blue in the face, this did not prevent the onslaught of symptoms that would plague me for many years starting at age 13.

At 13, my attempts at ‘emotional regulation’ as they had called it, were primarily bad coping mechanisms, i.e. self-harming (mostly cutting). I was considered ‘habitual’ or ‘chronic’, meaning that I did it regularly and with frequency, even if I wasn’t experiencing panic or distress in an outward way. I would start experimenting with substances here, sneaking cigarettes and alcohol whenever I could.

At 16, I started developing an eating disorder, which became quite severe through the next decade, culminating in extensive rehabilitation for my gastric system. I would have four suicide attempts. I would have two hospitalizations.

The diagnosis remained the same: Bipolar and borderline.

But then the pandemic happened when I was 25, and I was away from the ‘normal’ environments I was used to, which was school and school buildings; bright lights, bustling hallways, high demands on my attention and energy, endless boxes to check, intense demand for perfection.

I began to feel my symptoms ease. I liked being alone, and thrived being alone. I was… dare I say… happy. I had never considered myself a happy or peaceful person, but yet here I was, under the strangest of circumstances, finding myself perfectly content in a world of chaos.

My newfound happiness spurred my academic research into a new area. I’d obtained my MA in English, studying the mental illness memoirs of other women diagnosed with Bipolar Disorder, BPD, or eating disorders, but none of my research had prepared me to deal with being well. In the stories I’d read, these women were always sick, always unwell, were chronically suffering and miserable, and they almost always died by their own hand.

So why wasn’t I?

I started studying neuroscience exclusively, wanting to truly understand the functions of the brain itself– not just the language the brain is producing (as I had in studying narratives). In studying neuroscience, I began to understand the importance of the central nervous system, or parasympathetic and sympathetic nervous systems, and how actually settling down one’s nervous system could in fact relieve one of many Bipolar/BPD symptoms. I also found birth control helped.

Without sounding too ‘professorial’,  I’ll just summarize it like this: If the brain’s default assuming is I’m dying, it will do any and everything to save you (this is its desire for homeostasis). However, if the brain gets stuck on the I’m dying channel, aka fight-or-flight, it will lose its ability to discern real danger from perceived danger. In the cases of patients with neurodivergent central nervous systems (like autism), they are more likely to become stuck in this state as they are prone to over- and under-stimulation.

In my case, the hot temperatures of the classroom, the scratch of the tags on my back, the fluorescent lighting, the hum of electricity, the sound of Styrofoam at lunch, the inability to be alone… Years of this had resulted in chronic overstimulation. This is why I suspected I was cutting so frequently in high school. I was seeking relief in any way I could find. Cutting was simply the most effective grounding method I found that could be hidden. The phrase, “But you don’t bang your head on the wall!” applies here. I may have not been slamming my head on my desk, but that doesn’t mean I wasn’t doing it with the razor on my thigh.

Now science and medicine as a whole work through the Scientific Method, which boils down to, “We assume you have one diagnosis, we exhausted all treatments for said diagnosis, and if those have all failed, we will attempt a different diagnosis, repeat repeat repeat repeat.” The opposite way of working would be, “Let’s assume you do have something, start treating it, and if it works, the diagnosis would then be confirmed.”

So, for me, I just started assuming I did have autism…. And if I did have autism, what would that look like for me? How would I make accommodations to my sensory needs?

The changes were gradual: I started working remotely, keeping to my own hours; I didn’t force myself to sleep when I wasn’t sleepy, and I didn’t force myself to be productive when I was feeling low. I started keeping my house as cold as a morgue, always having been hot-natured and sweaty. I started eating foods repetitively and without thought (in ED treatment, they say repetitive habits are symptoms and we should eat with variety, but I dislike a variety of foods and prefer ones that are consistently the same and do not require chewing).

I stopped wearing wired or tight bras, and found that the feeling of not being able to breathe began to subside. I started wearing baggy pants and shirts, the shapeless feeling and lack of contact doing wonders for me mentally (not to mention not seeing my own body was deeply satisfying). I started dancing– a lot– really leaning into my stims, my echolalia. I rewatched my favorite shows unapologetically. I listened to my favorite songs on repeat. I started riding horses again. I stopped drinking. I started using instacart and doordash (the grocery store is always a terribly triggering and difficult place for me).

I stopped having a ‘cheery’ fake personality; my voice became monotone and lower. I started taking ice bath plunges to further help regulate my nervous system. I did yoga to stretch out my hips, where so much of our trauma as women gets stored. For the first time, I stopped being ‘27 personalities in a trenchcoat’. I simply went with the vibe.

Now before I continue– I want to emphasize the fact that I am speaking from a privileged place wherein I was able to both obtain a degree in my field, seek education in neuroscience, and have access to psychological and psychiatric care, and I am aware that not everyone can access this.

But once I fully got out of fight-or-flight, once I was no longer over-stimulated, when my body finally believed that I was safe– I finally slept. This would be the interlude that Meyers did in Twilight where months pass and nothing happens. I slept a lot. For hours. Just lay there and rotted. But I needed the hibernation– my body needed it. I didn’t want to at first, feeling lazy, but I knew that it was needed. I was tired. I had been someone else for so long, and now that I was finally me again, it was time to rest. And now being 29, my frontal lobe was finally solidified.

I do not have anxiety anymore. There are things that stress me out, but I am not panicked in the moment. I have gone through these challenges before and survived, I will again. I do not react quickly; this has been key to my success with horses again, for they spook so easily and need an owner/rider who is steady. I have been fully stepped on and bitten with no reaction. I am not concerned with how others perceive me, and when I find that I become preoccupied with outward appearance, I know it is time to retreat home and regain perspective. I call it ‘thinking in the morgue’, just sitting still in the cold quiet to gather my thoughts.

I learned that I wasn’t narcissistic or borderline in the classic sense, though I discovered I do have a natural lack of empathy, meaning I have excessive empathy for everything but (most) humans. Did you know the default was to like everyone and empathize with everyone?

I didn’t.

For me, empathy was earned– animals and oppressed persons got it by default– but the average Joe? No. I did not find them worthy of my time or empathy. This further explained why I failed to integrate well into social groups or maintain friendships– was it really splitting? Or was I just simply removing the empathy they had lost? Was I a bitch? Or was I simply not entertaining people I found offensive? Did I hate my family? Or was I simply able to see beyond the arbitrary family labels in favor of demonstrated, action-based, earned labels of chosen family? Was I a narcissist? Or was I just painfully aware that, at the end of the day, we truly do only have ourselves (as Taylor Swift says, “You’re on your own kid, you always have been”).

I learned that my brain wasn’t ‘broken’ and it didn’t need to be ‘medicated’ in the traditional psychiatric sense. I still take Vyvanse for my attention span, but I don’t take mood stabilizers, SSRIs, SNRIs, or benzodiazepines. I don’t have mood swings anymore, truthfully. I can tell when I’m becoming over-stimulated now, so I simply go home when it’s happening.

My friend died last year and I sat and cried through the entire holiday season. But I didn’t drink, didn’t cut, didn’t purge, didn’t starve. I just sat and cried, knowing that a good night’s sleep and a nice snack would be balm enough for today.

My psychiatrist did not want to believe I was autistic, but the proof was in the pudding, or, more accurately, the proof was in the lack of pudding, a complete absence of the trademark characteristics that had plagued me for over a decade– no longer a cutter, no longer having an eating disorder (stable weight for a year), no longer having suicidal thoughts or passive suicidality, no intense feelings of self-hatred, no endless rumination, no frantic ER trips for cardiac events related to panic and anxiety, no rage, no punching walls, no screaming, no black-out drunken nights, no hospitalizations.

I don’t like crying still. It’s exhausting. I think that experiencing sober grief proved too that I had spent many years avoiding the action of crying, which logical me finds terribly useless, pathetic, and wasteful (tears won’t bring them back, why let them fall?). But perhaps in this new state, my body is finding it safer to cry and does not run to the razors when we feel the well of tears. 

There are certainly aspects of autism that have illuminated my unknown physical ailments, and I was diagnosed with Ehlers Danlos Syndrome (EDS) last year, Mast Cell Activation Syndrome (MCAS). I have had a terrible time managing my allergies this year. I have hives constantly despite having perfect blood work (sound familiar?). But knowing EDS comes with autism was invaluable to getting the medication I needed to manage my Mast Cell symptoms and getting an accurate EDS diagnosis.

But as we know, the diagnosis of autism or other spectrum disorders was often based on one demographic, but it is simply impossible to assign one set of criteria for a ‘disorder’ that is really just a different brain pattern and system altogether. Some folks may have EDS/ MCAS like I do, some may be more hypermobile. As a former gymnast, the hypermobility is apparent but managed. For many, walking becomes difficult and painful; doctors are unwilling to explore options because, again, normal blood work. But knowing the links between autism and these various syndromes is key to helping patients become better informed and better equipped to manage their symptoms as they see fit, for no doctor can ever truly know what a patient needs in the intimate way we know what we need ourselves.

There are certainly people in my life who do not believe that I am autistic, finding me, “Too funny,” Too well dressed,” “Too educated,” or “Too much.” This is the same logic behind the BPD diagnosis- she laughs, “Too loud,” is “Too emotional,” is, “Too much.”

The truth is (without getting into too much grey area of gender) that girls/women/female/female socialized/etc. patients often present differently than their male counterparts (this is also due to hormonal differences like estrogen, but again, that’s a whole other can of worms, as they say). Generally speaking, the diagnostic criteria most professionals look for is: nonverbal, outwardly aggressive, antisociality, and poor test-taking/grades in school.

But for the girls, they often are hyperverbal and conversational (many rehearsing conversations in advance yet unable to deviate from the pre-decided script), inwardly aggressive (prone to self-harming behaviors kept hidden or secretive), participating in social events (but reporting feelings of being ‘on the outside’ or not fitting in totally, experiences bullying from other ‘popular’ girls), and excellent at school (perfectionist, photographic memories, savant-type skills, good-test takers).

Again, this is a broad generalization, but this is why in my specific age and gender demographic was often misdiagnosed or ignored. We could pretend well in public but we fell apart at home. To the outside, we are fakers, we pretend to be good or normal in the world (overstimulating) and then come home and fall apart and ‘go crazy’ (in attempts to regulate). It was easier for people to dismiss me as, “another crazy bitch” than addressing the neuroscience behind it.

But even those in my family who did not believe it cannot deny that the 30 year old in front of them bears no resemblance to the broken 18 year old they sent off to college. Indeed, just yesterday my former professors looked me dead in my face and didn’t recognize me at all.

I don’t have a lot of friends in real life, but the ones I do share my intense passions. They are the fellow Star Wars fans, the fellow Horse Girls, the Doctor Who fans, the Swifties. I say over and over again it was my Fandoms that saved me. And I think this is true for anyone on the ND spectrum– find what you love and let it consume you. Draw everything, write everything, get the stuffed animals, get the trinkets, collect the rocks. Let the joy be your guiding beacon and lean into it. Giving up my Ivy League school, giving up the high paying job… and just being a stable hand, a part time online tutor, and a nerdy hermit was the best decision I ever made. I don’t make as much as my cohort from grad school. I don’t have a house. I’m not married. I don’t have human children. I don’t have a nice car. But I have many rocks, a fabulous medical oddities collection, and endless joy.

I hope that my wellness and my writing continues to blossom and I can use my story as a way to help others find some sort of peace of mind… heaven knows we need it.

If you are out there questioning your diagnosis, questioning your future, questioning if real recovery or wellness is real, I can say with full certainty that it is. Is it hard to get to wellness? Yes, of course. But you’re not crazy if you think you’re on the spectrum. Trust your heart and your instinct and let your joy be your guide.

As my Granddad used to say: “The sun may set in the west, but it always rises again in the east.”