MY STRUGGLE WITH AUTISTIC BURNOUT LEFT ME BALD.

Nov 27, 2021

It should have been no big deal.

I was using the toilet in my very narrow bathroom, and when I stood up my hair caught on a precariously-placed metal peacock statue. Had I been in my logical mind, I’d have simply untangled it; or, at worst, maybe I’d have had to trim those hairs.

But I wasn’t in my logical mind. I was having an autistic meltdown during a complete nervous breakdown.

I’d been unable to participate in society since 2015, when a congenital B12 deficiency nearly killed me (via nervous system demyelination). That trauma sent fibromyalgia symptoms through the roof, bringing pain that hit 8’s on the pain scale daily, body-wide. It led to homelessness and two trips to the psych ward to prevent my own suicide, but by 2020 I’d gotten myself pretty together, if insecurely so.

Unfortunately, 2020 proved capable of ripping away the life I’d painstakingly cobbled together, leading to increased neurological issues and an eventual diagnosis of Level 2 Autism, finally, after 38 years of confusion and chaos.

I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.

While I’m extremely grateful to have answers to my brain, more tools to manage it, and connection to a literally like-minded community — processing an Autism diagnosis after decades of thinking you’re just bad at being normal is a total mindfuck. Worse, people aren’t prepared to know how to react, they don’t know even what Autism in adults actually looks like and entails; it took me over a year to even find a therapist that had any experience with autistic adults, an all-too-common problem.

At first, I was able to cling to the positive aspects nonetheless, but then there was the trauma of realizing that I really am very naive, and all the realizations that followed that one: They weren’t really laughing with me. There actually are physiological reasons for my differences, and people did indeed take advantage of those differences. The teasing that I was once able to laugh off took on a new light — events like being tied up in a barn loft whilst being taunted, then left there crying for hours looked like actual emotional abuse, and not just “kids being kids.”

Additionally, I’ve been fighting a neurological disorder called Autistic burnout (clinically different from occupational burnout) since the beginning of the pandemic, meaning I’ve been dealing with extremely intensified problematic Autism traits. This means I’m unpredictably unable to verbally communicate, tolerate sunlight, navigate technology, drive, walk/move normally, and sometimes even think — which feels like a black hole is swallowing me, my consciousness, from the inside.

There are so many other aspects too, it’s my freakin’ brain. It runs everything.

Trying to deal with it alone led to a mental break last summer, not long after the diagnosis. After that scary event, I spent this whole year trying to get out of the extremely increased symptoms and general neurological hell that is Autistic burnout.

Unfortunately, it hasn’t been a successful mission.

The always-out Southern California sun feels like fire ants and its brightness makes my head feel like it’ll explode, verbal communication outside of my “safe group” often leads to autistic meltdowns, my executive malfunction and sensory sensitivity issues are off the charts, and in the months leading up this summer’s breakdown I had several neighbors who seemed amused by pushing me into meltdowns — which are terrifying, dangerous, and make the burnout so much worse.

All this while in near-complete isolation, especially since the pandemic.

Additionally, not long before the tangling, I learned that shock treatment — something deemed torture by the UN — is being done on autistic people, in my country, the United States.

It broke my heart and further shattered my mind. Add on heartbreaking realizations about my past, resurfacing repressed memories, and a brain that’s been completely fried — and you should have a solid idea of where my vibes were at when my hair caught on that statue.

I did not react calmly, I freaked the fuck out.

The statue immediately caught onto my metal shower hooks, along with much more of my hair. I sobbed and yelled as I struggled to get free, my mind torturing me in a completely different way. I don’t know how long it took to free myself from the hooks, but it felt like it took hours. After I finally did, I carried the statue above my head and exhaustedly fell onto my bed, forgetting it had netting all around it.

The statue caught on the netting and another battle ensued. After standing on the bed to get some leverage, the statue caught fabric elsewhere and sent me flying backward, hitting the back of my head so hard the drywall cracked and now has a head-shaped dent that’s nearly a hole. I eventually ripped the netting from its hooks and lied down — the statue, netting, and everything else that joined, still on my head, with the statue’s prongs painfully pressing into my scalp and threatening to break the skin on my skull, it’d already left puncture wounds, now scars, on my arm.

I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.

The statue was attached in multiple places around my skull, right up to the scalp, I remember feeling the cold blade of the scissors against it as I chopped off the hair that’d taken me years and years to grow out. (Three months later, I can still hear the sound.) Projectile vomiting started not long after that, then I just lied in bed for days, totally and completely out of it.

The first couple of months afterward were terrifying.

Nearly anything, and certainly anyone, could send me into a meltdown or a panic attack — I had so many of the latter that hooks started blocking my vision, and I feared that I’d have more seizures, as they’d happened a week before this whole episode started. I cried at the drop of a hat, and since my brain wasn’t functioning, I was dropping fucking everything.

It’s now been a little over three months, but the back of my head sometimes still aches and I’m just as in burnout as I was before. I’ve been committed to a wellness morning routine for years, and I’m still doing it, but many mornings I burst out sobbing during my meditation, it’s just all so much, and it’s been so long.

But I’m grateful to have a support system, even if it’s mostly long-distance, who fundraised to keep homelessness at bay for the next couple of months anyway and keep me talking often enough to feel at least semi-human.

Then there’s the whole freakin’ now I’m hairless thing.

For me, my long hair had been a symbol of healing, as I’d finally been able to grow it out after resolving several health issues — it was a persistent sign that I’m healing from the inside out, a reminder that the rest of me will get there too. It was otherwise pretty pointless as I’ve been in isolation for the vast majority of my time since late 2015, but I was attached to my tresses nonetheless. Silly as it is, they’d been a comfort to me during this very long crisis.

The first few weeks were hard in that aspect, looking in the mirror and seeing my bareass scalp was shocking and disorienting, but those surface-level worries were also a distraction from the more terrifying and heart-wrenching thoughts spinning in my head.

I’ve since adjusted to my new look, but continue to struggle otherwise. I spend a lot of time trying not to feel furious at the fact that this debacle could have been entirely prevented with a couple of timely diagnoses, but instead, a freakin’ B12 deficiency nearly killed me and undiagnosed autism led to complete physical and mental burnout.

I feel like decades of my life were stolen from me by a system that cares about profits over patient health, a system that just shrugs about why autism diagnoses are primarily given to white males; leaving far too many unbeknownst autists living decades of our wondering why we’re so different and trying like hell to pretend to be whatever the heck “normal” is.

It’s not fair. And not enough people are trying to change things. It’s daunting.

But life goes on. All I can do is continue to walk the tightrope between doing and moving enough to keep fibro, depression, and life chaos at bay; and doing too much, thereby falling further into burnout, and starting the whole recovery over again. (Yet again.) Good vibes appreciated.

Writing this helped. Thanks for reading. ❤