The Great Storm Before My Belated Autism Diagnosis | Late-diagnosed Autistic Woman

To begin with, there is no perfect moment to discover that we are autistic. It's not like you get a notification pop-up saying, "Surprise! You're autistic!" at 2pm on a Tuesday while you're attempting to cook a curry without spilling anything. Seriously, the spillage is a major issue, so discovering you are a late-diagnosed autistic woman is definitely a life-changing revelation. And let's be honest, if we found out during the heyday, it wouldn't magically make autism evaporate into the atmosphere.

Above all, I believe this is one of the best times for such profound discovery of our autism. Thanks to the resources provided by fellow autistic humans sharing their insights and lived experiences, it's like we have a whole team of neurodiverse superheroes out there, each with their own superpowers. I mean, who needs X-ray vision when you can hyperfocus on the intricacies of a Lego set for ten hours straight? Plus, new research into neurodiversity is available, making it a great time to embrace our quirks and oddities. So, let’s grab our capes—preferably in a soft, sensory-friendly fabric—and celebrate our unique superpowers! After all, who needs Asgard when there's a fluffy blanket fort?

I found out about my autism during a spectacular autistic burnout like other late-diagnosed autistic women. At the time, I was unaware of the meaning of autistic burnout, and the road to recovery was unclear. However, I was glad to have a starting point for my exploration. This motivated me to share my thoughts with the universe, hoping it would help me make sense of it all, and hopefully it will help at least one human to find clarity. Additionally, my fellow "aliens" from my rightful planet might pick up my signals in the digital sphere and ping back to me with the insights that somehow have escaped me all these years.

My autistic burnout actually started much earlier, but in this article, I'm focusing on the first major instance that became evident in 2016, after I underwent surgery to remove a benign tumour. Later, I discovered that the tumour wasn't benign and contained cancer cells. Recovering from the surgery was a process that would take months, and I had no idea how to perform such recovery, as it doesn't come naturally to me. This sets the stage for my intense autistic fatigue and burnout. The restlessness might be due to my autism, my Asian background, the childhood neglect I experienced, or a combination of these and other factors. However, that's a topic for another article.

Late-diagnosed Autistic Woman With Family Obligations

While I was neglecting my own recovery, my entire family was scheduled to visit for the first time since I moved to the UK. This required me to put everything on hold to accommodate them, which is like hosting an Olympics in my house. Aiming to offer a remarkable experience with once-in-a-lifetime-awe-inspiring-masterpiece-filled-with-mind-blowing-moments-and-unforgettable-memories. My family certainly left with stories to tell, and I was left with a newfound appreciation for the art of recovery—mostly because I was exhausted from trying to impress them.

In this context, the expectation is that family must be prioritised above all else is fundamental. This philosophy, often referred to as borrowed Confucianism, surpass individual interests. I adhered to these principles until recently, when I discovered that I am a late-diagnosed autistic woman and recognised my autistic fatigue and burnout. It was like realising I had jumped from a plane without a parachute! This belief is deeply ingrained in me, driving me to serve my purpose, persistently strive without complaints, and never reveal any flaws—much like a puppy unwilling to admit exhaustion.

During this time, I took a five-week leave to be with my family, with the intention of making lifelong memories. However, I didn't anticipate how taxing this experience would be, leaving me only with fatigue as a reward. I hadn’t had the chance to recover after my surgery, and I was blissfully unaware of my neurodivergence, which I now realise is like a chaotic carnival ride on a rollercoaster while vomiting my lunch.

The positive outcome is that I learned to reflect and recognise the missed opportunities, realising how they unintentionally made the ride more difficult than needed. It's like trying to find a parking space in a crowded spot only to realise you’ve been circling the same block for an hour—only to discover there was a free space right next to the entrance all along!

These reflections provide a glimpse into the challenges I faced as a woman diagnosed with autism later in life. While not all observations and insights are contained in this article, they are scattered throughout the website I created to support my recovery. Think of it as a treasure map, but instead of gold, you find wisdom (and maybe a few jokes). You are more than welcome to join me on this trip of healing out loud.

Cooking Up the Ultimate Autistic Burnout

By the time I realised the gravity of the situation, it was a little too late; the perfect storm had already taken shape and caused enough damage to my inner world. I thought I was just cooking a pot of soup for my family, but apparently, I was also stirring up a hurricane! I have lost a great deal in the midst of this turmoil—like my sanity, my favourite pair of socks, and the last ball of mochi (the real tragedy, if we're being honest).

I am still navigating this new, but not directionless path, to find a safe place, preferably one with snacks and a good Wi-Fi signal. If this was a lesson in cooking up the perfect storm, I have gone beyond expectations. However, I have learned that just because I can accomplish something—like turning my life into a thriller—it doesn't mean I should make such sacrifices to achieve it. Seriously, who needs this much drama?

Welcome to a snippet of those silent rules, where recovery is merely a suggestion and family expectations are like trying to fit a giraffe into a Mini. Here’s a peek into the hilariously chaotic Olympics that is my daily existence:

• Recovery? What’s That? – I’ve put my recovery on hold like a Netflix series that keeps getting delayed for another season. Who needs self-care when you can just dive headfirst into the family drama?

• Life’s Unreasonable Rules – Following family expectations is like playing a game of Twister, but the mat is on fire, and the rules keep changing. “Put your left foot on ‘Do What Mom Says!’ and your right foot on ‘Ignore Your Own Needs!’”

• Conversations with 13 People – Juggling conversations with 13 people at once is my new Olympic sport. I should get a medal for translating between Cantonese and English while dodging flying food and uninvited advice!

• Unspoken Signals – Turning unspoken signals into required actions is like trying to decode an ancient language. “Did Mom just raise her eyebrow? Is that a sign to serve dessert or a warning that I’m wrong again and I’m about to be interrogated?”

• Sensory Overload Shopping Trips – Shopping trips feel like I’m in a sensory overload competition. The bright lights, loud music, and endless aisles turn me into a deer caught in headlights, except I’m also trying to remember if I need rice or a life coach.

• Manoeuvring Through Crowds – Sightseeing in crowds is like being in a game of human pinball. I’m bouncing off people while trying to avoid the dreaded “Are we there yet?” from my entourage.

• Driving Across the Country – The relentless demands of cross-country driving is more like "Survival of the Fittest" than a "Road Trip". Who knew that navigating traffic and receiving critiques on my driving could be as intense as an action movie, with the GPS playing the villain by constantly rerouting? Yet somehow, my partner at the time, who recently passed his driving test with my guidance, is an excellent driver.

• Cooking for 13 People – And let’s not forget the daily marathon of cooking for 13 people. It’s like being a chef on a reality show where the secret ingredient is chaos and the judges are all very hungry and impossible to satisfy.

I was living the dream, one absurd moment at a time. If you need me, I was awake at 3am trying to figure out how to turn this Olympics into a stand-up routine!

Warning: Recipe for Meltdown Madness! These ingredients are the secret sauce for triggering my autistic meltdowns, severe burnouts, and complete shutdowns. I advise against adding these to the already complex experience of autism. While a small portion of these come naturally to me, most require significant masking. It took years of practice and scripting to perfect the right response or reaction. I've also developed a list of subtle stimming techniques to temporarily cope.

So, remember, if you want to keep your day meltdown-free, steer clear of these ingredients. Your future self will thank you—preferably in a quiet room with a nice cup of camomile tea!

Concealing the Loss of Skills and Self-Belief

Once the family visit ended, I dove headfirst back into work, pretending my inner conflicts were just a bad case of indigestion. I treated the struggles with managing daily tasks like it was a plague—avoid at all costs!

Facing the Crisis

As I tiptoed around my crumbling existence, I refused to acknowledge the impending crisis brewing like a pot of burnt tea. It was like I was starring in my own sitcom, where the punchline was: “How did I forget how to eat and drink on a schedule?”

Skills I Was Losing

Let’s break down the skills I was losing, shall we? Here are the highlights:

• Cooking: My idea of gourmet now involves packet ramen and calling it “artisan”.

• Cleaning: Dust balls have started paying rent in my house. I’m considering putting them on the mortgage.

• Driving: My car and I have developed a love-hate relationship. It loves to sit in the driveway, and I hate that it won’t drive itself.

• Personal Hygiene: Let’s just say I’m practically strangers with my shampoo and conditioner. And the toothbrush is just partying too loud.

• Commuting: I’ve become a master at the art of “walk in circles until you remember where you were going”.

• Memory: My brain has officially filed for bankruptcy. I can’t remember what I had for breakfast, but I can recite the entire book of nutritional ingredients I read five years ago.

• Finishing Tasks: I start a task like I’m training for a marathon—lots of enthusiasm and hyperfocus at the beginning, but I end up in a wormhole.

Each day, it seemed my intelligence is diminishing faster than my willpower at a sushi buffet. I never expected this! I've relied entirely on my intellectual capabilities and exceptional memory—like a squirrel hoarding acorns for winter—to get where I am today. This unexpected loss of skills is both crippling and endangering my survival and identity. My brain, once logical and methodical, now seems to be running on dial-up internet. I can only conclude that I've somehow become stupid and lazy.

The only survival instinct left is to mask, followed by even more masking. The hope is that the disguise would just be welded shut, and it would go under the radar so even my reflection does a double-take and says, “Who the heck are you?". Before I knew it, my impulsiveness took over entirely, directing all my intense focus on my career and simultaneously launching a business—because why not add a little more chaos to the mix? The compulsion was charging ahead at full speed, like a runaway train with no brakes.

So here I am, masked up and multitasking like a pro, hoping that one day I could blindly solve all my problems while wearing a very fashionable disguise!

The World I Meticulously Built Collapsed

Driven by adrenaline, I found myself in a tornado of false optimism, like a cat convinced it could outrun a car. I was subconsciously banking on this optimism for survival, as if it were a life raft made of marshmallows—sweet but definitely not seaworthy. My impulsiveness hit an all-time high, leading me to believe that my special interests would ignite a hyperfocus so powerful it could light up the entire city, overshadowing any difficulties like a concert light show at a funeral.

In some ways, this was a success story—until it didn’t. It was like trying to power a rocket with a bottle of soda and Mentos; sure, it launched me into the stratosphere for a moment, but the inevitable crash landing was less than graceful. I might have been riding the wave of enthusiasm, but it was a wave made of whipped cream—fluffy, fun, and ultimately a sticky mess to clean up!

Failing to recognise my autistic burnout was like ignoring a smoke alarm while barbecuing indoors without any windows—my health and wellbeing was reduced to ashes along with the wings. I was frantically seeking reasons to comprehend why I seemed like a browser with too many tabs open—my brain was buffering, and all I could do was stare at the spinning wheel of doom!

Eventually, I became so disoriented that my thoughts were always clouded, like trying to see through a rain-soaked window while wearing sunglasses. I lost sight of the meticulous world I had built over the years, and I was unable to take the precise steps needed to progress to the next level of life—which had turned into a SimCity project gone horribly wrong!

It was as if I’d reached and surpassed my limits, and my body no longer felt like my own. I was convinced I had accidentally signed up for a three-in-one package: fight, flight, and freeze modes were all triggered simultaneously! At this point, I’m just waiting for my body to decide if it wants to fight the day, flee from it, or just stand there looking like a confused statue. Can someone please send help—or at least a brioche? I need to feed this chaos!

The vision board disappeared into oblivion, along with other important aspects of my life. My brain didn't just clear its cache; it decided to release everything in one swift motion to become completely empty. It was as though I was living someone else's life, wearing someone else's clothes, and driving someone else's car toward a destination that had absolutely nothing to do with me. I ran out of battery in every way and didn't know how to recharge. To such a degree, I had to let go of the engagement, the eight-year relationship, the friendships, the career, the house, and the life I once knew.

En Route to My Belated Autism Diagnosis as an Adult

As I embarked on the road to seeking a formal autism diagnosis, I yet to allow my wheels to stop spinning, as I found it impossible to stop working. Instead, I was moving at the speed of a freight train. Only now do I begin to question, "How did I deal with the collapse?", "Where did I store all the accumulated things?", "Did I grieve for the void?", "Have I become used to the numbness?", "Did my coping mechanisms create this oblivion?", "Why did I ignore the signs?"

While attempting to eliminate the chances of exposing my imperfections, I noticed I was relentlessly trying to outwit my own nature. It was as if I believed I could alter my genetic coding to become something I am not and will never be. On reflection, it seems my autism wouldn't allow me to give up on fighting itself. It crafted a perfect facade to maintain composure, keeping the implosion in my inner world hidden.

It was only when the pandemic struck that I was forced to make an emergency stop and confront the reality I had been avoiding. The eureka moment was not extraordinary; it took something as simple as a fried egg in a K-drama for my partner and me to pause, look at each other briefly, and then check the show's description. The actor's reaction was all too familiar to us. I went through my recollection and evaluated the term autism. I then used a translation app on my phone to translate the English word "autism" into Chinese to see if it was a term I recognised from my native language. And there it was, a term I often heard as a child—a word frequently used maliciously to tease me during my childhood.

From that point onward, I’m officially en route to understand how women can receive a late diagnosis, setting a milestone to seek answers I had neglected for years. It was like deciding to finally read the instruction manual for a complicated piece of IKEA furniture—only to discover that the instructions were written in a language I didn’t even know existed!

So there I was, armed with Google and a questionable amount of furry layers, ready to dive into the world of autism. I figured if I could binge-watch an entire season of a show in one sitting, while writing a business plan, surely I could tackle this! I mean, how hard could it be? Spoiler alert: much harder than figuring out how to assemble a rocket with missing parts!

My Trek Included but Not Limited to:

• Reading research papers with references thicker than a brick—who knew knowledge could weigh so much?

• Watching shows on Netflix on autism that made me question if I was learning about autism or just how to quickly recite an encyclopedia.

• Having deep conversations with my fur baby, who, despite his lack of verbal skills, seemed to understand me better than all humans.

• And, of course, a lot of Googling: “Is it normal to feel like a confused rice cake?” Spoiler: Yes, yes it is.

At least I was moving in the right direction! Who would have thought that self-discovery for an autistic woman diagnosed later in life could involve so many unexpected turns?