Imagine that trying to enjoy the world outside of your tiny studio apartment (even your precious patio) involved a very high chance of your brain becoming overwhelmed to the point of malfunction; the sounds, brightness, unpredictability — all threats that could potentially result in meltdowns and a repeat of seizures, which you find terrifying.
Every time you verbally communicate there’s a ~50% percent chance of the words coming out wrong, and/or with tears. Even text-communication is often overwhelming. Basic executive functioning tasks, like routine cooking, become immensely challenging. Generally, you have all the energy of a sloth.
You are in autistic burnout.
And you’ve been in and out of it for six months.
Then you have a precious good brain day. It aligns, not surprisingly, with a good health day — you also have fibromyalgia, which is common in autistic women. It’s the winter solstice, so you take your emotional support dog to a nearby lagoon for some nature time.
Yes, it was only 15 minutes on the way to pick up your grocery order, and yes getting some sun did make your skin itch in a strange electric way — but it was a beautiful walk, so so very worth it.
You saw light dancing on water, herons perched on floating Christmas-tree structures, discovered your newly-adopted dog (Foxy) hates dust but has the cutest sneezes in the world, and watched her make a little girl’s day as they said hello, both all wiggly and excited at life.
After you put your groceries away at home, you’re amped to find that you still have some energy and cognitive function left to work — so you sit down to write, delighted at the sound of your own hands quickly tapping away at your keyboard.
But then a far more unpleasant noise starts, yet again.
At first, it’s just some music down the street, you hope it’s a passing car. But instead, it gets louder. The words on your computer screen begin to scramble in your head, you can no longer sort out their meanings, let alone write more of them.
The music gets even louder.
You shut your door and tiny window, so now there’s less noise but almost no natural light. It’s hard to decide if that’s more of a sensory relief or depressing factor. You turn on a lamp and your stimmy mind-happy-making music, try to focus. But it gets even louder. You give up on work and turn to streaming televised art to calm you down and drown it out.
But their music is louder than your TV. In your apartment. With the window and door shut.
Your brain is threatening to go white again, feeling like it could explode, waves seeming to pass through your vision— you know you can’t keep living like this. Literally. Cannot.
You head outside and find a car parked sideways in the road (blocking access to the street), with a nearby scooter playing music so loud you feel your teeth vibrate from 100 feet away.
There are 3 or 4 men standing around the car, their bodies postured in an intimidating manner. Bystanders stare at them, seemingly irritated but not saying anything. Your mind tries to tell you confronting them might not be safe, but you can hardly hear your own thoughts, fuck you can hardly think them — so this just causes more anger.
As you pass the blaring speaker, you lose control of your body and it squirms uncontrollably, which gets the men’s attention. You ask them to please turn it down, saying you can’t work; but they can’t hear you over the noise. You try again, your voice cracking, your hands shaking. They turn it down a bit. You walk to the end of the street, turn the corner so they can’t see you, then stop to try and get yourself together.
They fucking turn it back up.
You’ve lost it. You feel your eyes going steely and realize you’re already beelining towards the man who answered for everyone, your voice is saying things, you’re not even sure what.
He just smiles, even lets out a small laugh.
The man turns it down again, then stares at you, arms crossed, chest out. Your response is squeaky and shaky, trying to explain autism and sensory processing and meltdowns and how this loudness is stealing your life.
Which is what always happens when you get like this.
They quietly laugh. And smile at you like, “you strange silly thing,” then deny having done so if you manage to call them on it.
And every single time, it makes you want to give up entirely. Literally.
Your whole body starts shaking uncontrollably, you realize there are like 10 people now staring at you now (your neighbors!), and you can’t really understand what their faces are saying. (Fear? Pity?) You walk away, unable to hide the stimming and shaking, but holding your tears in until you collapse in your apartment.
Then you do your best to shake it off, knowing letting yourself spin-out would result in a full meltdown. (They are the same in adults. They are a complete loss of control, and they are horrifying.) Luckily, you’re very practiced at pretending you don’t feel like your whole world is on fire.
You stim it out, reflect on all the good points of your (comparably good) day, then use the adrenaline from the incident and your inability to recognize your emotions for the good — managing to have a relatively nice mellow little Yule evening.
Of course, the next day you’re useless, recovering. Your work can’t get done. The vegetables don’t even get chopped, which is fine because you’re too nauseous to eat them. You feel worthless, like the dirt on the bottom of that quietly laughing man’s boots.
But the day after that you wrote this, anyway.
You know your immense strength. You know your whys. You have your passion and drive. You know how to appreciate the good, and you have the will to fixate on it.
It might seem like you’re just sitting there, but you’re learning to steer your mind.
Meditation is simply the shit. It may seem like just sitting there trying not to think, but it’s really a process of centering in oneself. Of learning to better manage our mental space. Of finding our best selves.
And it’ll start working quickly too, even if you find that you can’t get a moment of mental silence during your sit. This is because of increasing mindfulness, meaning an awareness of what is happening in one’s mind.
If you’re a fellow flawed human, you’ve probably heard yourself say, “I’m sorry, I don’t know why I did it, it just happened!” (Not. Fun.)
Mindfulness helps get rid of that sort of banal unpleasantness by properly introducing us to our minds, thereby meeting our motivations. And when we start to see the why’s behind our did’s — they change.
And then there’s the recognizing of harmful thought patterns: seeing the negative self-talk, all the replaying shite memories, the limiting beliefs, and all the other ways we let our minds bully us.
Meditation and mindfulness help create a detachment from all that unpleasantness, which helps it to lose momentum, allowing us space to chooseto create a more nourishing mindset.
Our society seems to think we’re a mere collection of our past thoughts, that they define us — but our minds our tools, they are not who we are.
We think, therefore we are, sure sure sure.
But we can also think about thinking and change it, working to ban harmful conditioning and replace it with awesome; therefore we are also more than our minds.
Our minds are just tools.
And meditation helps empower us to use them better, to gain control — so a tool isn’t always calling the shots. (We get enough of that in politics, yes?)
It’s super easy to get started too.
Here’s a quick how-to:
Get in a comfy position. You don’t need to pretzel it up, know lying down can lead to sleeping, but other than that, just be comfortable in your body.
Focus on your breath. Feel the air moving through your nose, filling your lungs, and effortlessly flowing out.
Don’t engage with your thoughts. As Mooji says, “Let every thought come and hug you, but you don’t hug anything.” Don’t judge it, try to not mentally react, just note it and return to your breath.
Repeat, repeat, repeat! It’ll get easier with time, really it will. Eventually, you’ll start enjoying the peace of clear mind, which is addicting once you know it.
Anywhere. In my cubicle days, I used to depend on bathroom stall meditations to find my center and get through the day — you can truly meditate an-y-where. Try it on a walk, focusing on the sensations in your body as it moves.
Anytime. Well, you can’t meditate while having a conversation, not a decent one anyways — but you can rock the mindful 24/7, simply by keeping an eye on your mind. Keep a detached, yet discerning, perspective; giving energy to inspired thought patterns, and ignoring the others, which will get them to peter out.
If you visited a zoo, and a gorilla started talking to you, what do you think they’d say about humanity? Think they’d be cool with the modern state of affairs?
According to Daniel Quinn, author of 1992’s award-winning Ishmael: An Adventure of the Mind and Spirit — the answers are a whole lot, and hell no.
Ishmael features a man being taught about the world by a gorilla, one who divides humanity into two types: the Leavers and the Takers.
The first philosophy puts humans within the web of nature, working consciously to only take what they need; and the other puts humans as the world’s ruler, free to take whatever we can.
If the events of 2020 have left you questioning the way our society does things, or are interested in living a more conscious life — this should be your next read.
Here are a dozen (very hard-to-narrow-down) quotes from the book:
“The premise of the Taker story is ‘the world belongs to man’. … The premise of the Leaver story is ‘man belongs to the world’.”
“And every time the Takers stamp out a Leaver culture, a wisdom ultimately tested since the birth of mankind disappears from the world beyond recall.”
“I have amazing news for you. Man is not alone on this planet. He is part of a community, upon which he depends absolutely.”
“The obvious can sometimes be illuminating when perceived in an unhabitual way.”
“You’re captives of a civilizational system that more or less compels you to go on destroying the world in order to live… I think there are many among you who would be glad to release the world from captivity… This is what prevents them: They’re unable to find the bars of the cage.”
“The world of the Takers is one vast prison, and except for a handful of Leavers scattered across the world, the entire human race is now inside that prison.”
“Donald Trump can do a lot of things I can’t, but he can no more get out of the prison than I can.”
“They put their shoulders to the wheel during the day, stupefy themselves with drugs or television at night, and try not to think too searchingly about the world they’re leaving their children to cope with.”
“Diversity is a survival factor for the community itself. A community of a hundred million species can survive almost anything short of a global catastrophe.”
“We’re not destroying the world because we’re clumsy. We’re destroying the world because we are, in a very literal and deliberate way, at war with it.”
“The mythology of your culture hums in your ears so constantly that no one pays the slightest bit of attention to it.”
“I think what you’re groping for is that people need more than to feel scolded, more than to be made to feel stupid and guilty. They need more than a vision of doom. They need a vision of the world and of themselves that inspires them.”
Can you envision a version of yourself you find inspiring?
Originally written on April 29, 2017, a year and a few months after I nearly died from a congenital vitamin B12 deficiency (maintained with help of the aptly-dubbed MTHFR mutation), which sent aggravating fibromyalgia symptoms to completely horrifying and utterly debilitating.
After a few years of continued health-improving obsession, I’ve gotten much better, but rereading it just now still made me cry.
I hope it helps someone out there in the worst of it feel hopeful and less alone:
Due to a problem with my nervous system, I am disabled and chronically ill. My symptoms often become incorporated into my dreams, sometimes it’s almost funny: a man getting an electric foot massage on my back when the machine shorts out. (Okay, weird/scary, not that funny.) More often, it’s just me trying to keep up with the dream and sorely falling behind.
I just woke up from a miserable one. A repeater. Familiar people are telling me that I’m faking it. That I’m pretending to be weak to get attention. That I’m just irresponsible and lazy and need to try harder. Or worse, they roll their eyes and give one another a knowing smile like, “Won’t this be fun to dish about later?”
It’s bad enough constantly having to explain what’s wrong with me and why I can’t do x, y, and/or z just like everyone else — but then to have convince them that you aren’t telling falsities, and to do so when your brain can’t even recall basic information reliably — I can’t explain how awful it is. How demoralizing. How it just makes a person want to give up.
But then to also do it every night in my dreams? Shiiiiiiit, this has to stop.
I clearly still have issues with people from my not-so-distant past, that’s where I can do work. Forgiveness. Self-love. Continuing to hang with empathetic folks.
But the real problem lies with society. The people in my dream aren’t “bad” guys. They are very “normal” people. We, as a society, still don’t have a strong understanding of invisible illness. (Even though it’s pretty darn common.) And we definitely aren’t aware of how to behave with empathy in regard to it.
Just because you can’t see a person’s pain doesn’t make it less real. To us who deal with invisible illness, it’s all the more real: because we’re so often received with disbelief and even bitterness in place of compassion. Can you imagine? No, like, really try to imagine.
Take a couple of minutes: Imagine waking up in agony, trying to shake off dreams like I just explained. Knowing that you have maybe 3–4 usable hours, that this agony is as good as you’ll feel all day, that it’s just going to get worse. Pushing through everything that you can get done despite your symptoms — which is never even close to the amount that needs to be done. As far as keeping up with life goes, you’re fucking drowning.
And then the pain levels rise so high that you can’t think straight. And then the fatigue levels get so high that just taking a bath is daunting. The television, and all sounds, feel abrasive; so all you can do is lie there until you feel tired enough to pass out despite the pain. But once you actually get to bed that’s rarely the case, as your memory foam feels like pavement — squishing your tender body and making it scream all the louder, a cacophony of miserable symptoms that you just have to lie there and bear. For hours. Every. Single. Night.
Imagine getting through a day and night like that, and then having someone say to you, “Man, I’m jealous — I wish I could stay at home all day!”
Do you see how demoralizing that could be to someone? It’s a private fucking hell, it’s truly awful. Not that my whole life is awful, but more days than not are indeed this bad, and all too often that’s people’s attitude. It really wipes my resting niceface right off, and totally screws up my “fake it ’till you make it” coping strategy.
But how can you really know if someone’s sick if they don’t look it?
WITH THEIR WORDS, dummy. YOU LISTEN TO THEIR WORDS.
Trust the people in your life who tell you they’re not feeling well. Your reaction to someone else’s admittance of that, which often doesn’t happen until a breaking point — can have a HUGE impact on their life. Be the person that helps them find the right doctor. That googles their symptoms in-depth to help find answers. Or simply be the person that listens to what’s going on with them, instead of hurrying away uncomfortably or changing the subject.
We’re doing it all wrong when it comes to our attitudes about chronic illness, and it’s at the detriment of those of us already in a very precarious place. This is off-topic for the website, I know, but it’s really important to me — so I suppose my sharing here is fuckless.
My bookbaby, #HowILostAllMyFucks, is a 3-parter. This is from Part III’s Fuckless Adventures, “Make something beautiful.”
Carl Sagan once said, “We are a way for the universe to know itself. Some part of our being knows this is where we came from. We long to return. And we can, because the cosmos is also within us. We’re made of star stuff.”
The idea that creation is a way for the universe to know itself is a spiritual concept that I found both internally (meditation) then externally (philosophy class) almost twenty years ago.
It helps me find meaning when things seem just ridiculous, detachment at the unpredictable, and lightness amongst the heavy.
And he’s being literal about the starstuff.
The carbon, nitrogen, and oxygen atoms in our bods were created in stars that lived over 4.5 billion years ago. (And perhaps some evolving dinosaur bits in betwixt…)
This fun with creative makeup is a representation of that idea, using a leaf as the earth-thing. I’m going to get a pro to design a similar tattoo; though not across my face, haha, not quite that fuckless.
It was a lovely time. I’m even more excited to get the tattoo, and amped to keep playing with my new hobby here.
I’m a spoonie and had been struggling physically and mentally to get decent work out of myself, but after playing with face paint and having some silly photo fun — most of an essay poured right out! Inspiration begetting more inspiration, gotta love that.
As for the rest of the book: Part I sets the fuckless scene in traditional reading form, and Part II is a 30-day meditation challenge.
Together they will have you setting yourself freeeeeee of all the bullshit you don’t want and don’t need.
I’m seeking a book deal for my bookbaby and very much appreciate follows and claps ❤
A few years ago, everyone on the internet was all about #positivevibesonly, and I was fully on board. ⠀ ⠀ It was the first year of being full-time debilitatingly ill, and I doused myself in positivity, making myself feel better via “I’ll heal by xx date” hopes, then hope would proceed to kick my fucking ass, over, and over, and over. For. Years.⠀ ⠀ Trying to put roses on a shit sandwich results in losing touch with reality, setting ourselves up for disappointment.
And that’s when it’s our sandwich.⠀ ⠀ When we put roses on someone else’s shit sandwich, it can be far more damaging — setting expectations that aren’t possible, leaving the person in shit feeling even worse, because now they’re letting others down too. It leaves hurting people feeling further diminished.⠀ ⠀ And when it comes to chronic conditions, toxic positivity can be downright ableist. If someone shares their struggle with you, anything along the lines of, “It’s not that bad” isn’t helpful. At. All.⠀ ⠀ If you’d been stuck in rain for hours, feeling cold and miserable, and were likely to stay there for years — would you feel better if someone said, “At least it’s not a blizzard?”⠀ ⠀ Helpful positivity lifts up others, “You’ve come so far the last five years, and you’re working so hard. You’ve got lots of healing ahead, there’s no hurry, and I’ll be here.”⠀ ⠀ On the other hand, toxic positivity is like a band-aid that’s just the sticker — “It doesn’t seem that bad to me, I bet you’re fine.” It hurts the wound further, ripping off healing when it’s revealed to be a farce.⠀ ⠀ Looking for a silver lining is lovely. But never insist a highly-problematic cloud isn’t an issue. ⠀
Sometimes in order to become who we need to be, we actually *need* our lives to act like big asshoolios for a bit. Obnoxious as it may be, it’s this sort of being cracked open that often leads us to our inner treasures; our unique strengths, talents, quirks, and inspirations that could not have been mused up through the same ol’ same ol’.
So if life is presently pushing you towards a breaking point, I recommend that you lean into your emotions instead of avoiding them – the way out, is through. Have a meditation on the matter, a good cry, or beat the shit out of your bed.
Sooner or later, you’re going to break either way. We break because we need it, so the process cannot be stopped — only proloooonged.
You can do it with intention, knowing that the upset is happening for a reason, and you’re gonna fucking find it – or you’ll break when it finally catches up with you, usually by surprise, and never at a great time. (In my experience, the universe tends to get louder when it repeats itself…)
Nothing, inherently. It’s nice to want to get along and it’s normal to prefer being adored over disliked, of course.
The problem is when you start giving fucks in order to get someone to like you: Agreeing when you actually don’t, censoring yourself beyond politeness, doing things you’d really rather not, allowing attitudes towards you that are less than respectful, and all kinds of other ways we diminish ourselves when we make our objective: be liked.
Because when that’s your MO, there’s no choice than to be less of yourself. Giving fucks makes a dull wash out of the glory that you are; the you when you’re behaving with more inner-direction, when you’re really being yourself.
This realization terrified me when I first had it. I thought of myself as being a good friend, well-liked, caring, friendly, fun – I was only considering myself in relation to others. This led to trouble when I was alone. Over analyzing my relationships. Overconsidering others’ perspectives on things like my art, or even what kind of music I was listening to, i.e. “I’d be so embarrassed if so-in-so knew how much I love this.”
It was like I was never alone, not really, despite larger-than-normal amounts of time spent alone. Who was I even living my life for?
It was such an important realization: My life should be about me.
It was like I was spending all of my energy on being the best co-star in everyone else’s movie. Not that I didn’t pursue my own passions and whatnot – but “they” (those I’d prefer like me) were intrinsically involved in my decisions, even ones that had nothing to do with them. It was just little blips of thought that seemed like nothing, but as a mindfulness-obsessed sort, I quickly realized that they added up to living on the periphery of my own life.
Watch your mind and see if you do this. (You almost def do, society trains us to.) And try to drop it. This will help loads in the next step: staying inner-directed when you’re with others. This involves fighting the urge to blend in and saying what you really, truly, think of matters and opinions that arise. (Don’t be a dick or anything… Or maybe do, I don’t know what’s best for you. 🤷♀️)
Start paying attention to your feels when you’re around others, and right afterward. It’s important to feel good.
I feel like that’s almost a controversial thing to say, I can hear the cries of, “but selfish!” It’s not selfish to ensure your well-being, not at all. In fact, making sure you’re feeling centered is responsible. Being where you want to be and doing the things you want to do is responsible. The world needs you at your best! Your people need you at your best!
You’ll probably find that even when you’re acting from a truly inner-directed place you’re still a positive force in others’ lives. Perhaps not in the same ways. And perhaps with a totally different flavor: martyrdom vs weeeeeeee.
And the funny thing is that when you get really good at this inner-direction thing, most folks will indeed like you. It’s nice to be around people who are at peace with who they are, comforting even. They lack neediness and emanate confidence. They offer unique perspectives and speak their truth.
But others will still totally think you suck. C’est la vie.
Looks can be deceiving…there’s so much people don’t know.
TW: Suicidal ideation.
What comes to mind when you think of an autistic person? The movie Rain Man? Someone who loves to talk about bugs? A child hitting his head against the wall during a raging meltdown?
You probably don’t picture someone like me; a 37-year-old female who’s been described using words like “perky,” who’s organized an extensive amount of fundraising efforts and events, who’s had some career success, someone who largely “seems normal.” So, when someone like that, someone like me, winds up being diagnosed with Level 2 autism; there are some who are dubious, especially those unaware of autism updates in the Diagnostic and Statistical Manual of Mental Disorders, which redefined the already-misunderstood syndrome.
These doubtful folks also cannot see the things undiagnosed autistic adults go through, the times I quite resemble that raging child (but worse, tbh), and the circumstances that build up to it. And they don’t know the chaos it causes, how it can lead to loss of income, shelter, and relationships:
They don’t know that in addition to being a way to control my social environment, planning fundraising events were my specialinterest; something I engaged in therapeutically, but compulsively. They don’t know that even a decade post-planning, the idea of running a charity event’s silent auction still makes my hands sweat because names and numbers are like Teflon to my brain. They don’t know having problems with executive function isn’t the same thing as “being ditzy,” and they don’t know it isn’t the same thing as not paying attention, either. (I care, far far too much.) They don’t know that I felt like an outsider at my own events, or that I’d get extremely drunk afterwards because my body was vibrating wrong and my mind wouldn’t stop obsessing over each interaction.
They don’t know that while the motivations for my efforts were pure of heart, my enjoyment was largely a façade — one indicative of how I’ve approached life in general, trying to hide the weird complicated iceberg of who I am by showing just the teensy lil’ sparkling bit. They also don’t know that this method, pretending to “be normal” all the time, started exploding, to my (often extreme) harm, as soon as I put on that mask.
And they don’t know the price of “seeming normal.” They don’t know about the eating disorders, or about the night I was sent to the mental ward for my safety at 19, the night the list of suicide “warning signs” started looking like a list of announcements. They don’t know that I had my first mental break later that year, 2002; at one point going out dressed weirdly and finally behaving however I wanted, feeling free as a bird, as if my mind had been repressed its entire life and finally demanded a break from the pressure. And they don’t know about the other mental hospital stays, where I kept posting to make sure people knew I was going to be okay, even as I planned and wished for life to cease with every fiber of my being — feeling that since I’d tried everything and was still failing, death was simply the most logical solution.
They don’t know I’ve lived in seven different cities since high school, desperate for somewhere that felt safe to be the whole me. They don’t know how many times I’ve tried to live abroad, hoping I’d be perceived as less “off” if I were a foreigner. They don’t know about all of the work problems I’ve had; all the whispering, the cocked heads, the strange comments, the constant confusion and misunderstandings. They don’t know that fluorescent lights make it hard for me to think, as does hearing others’ conversations; or that air conditioning can truly send me over the edge, just like uncomfortable shoes. And they don’t know that my brain can have a much harder time cooperating if I have an aversion to the task at hand, that building pressure while doing it makes me feel like I’m going to explode. They don’t know that getting energetically overwhelmed to the point of neural malfunction doesn’t mean someone is lazy.
They don’t know my thoughts often happen all at once, examining an idea from all over, reviewing what I know and have experienced, then finally puzzling it together; which makes it difficult to verbalize a prompt reply, especially since it doesn’t really happen in language but in…impressions? I am constantly struggling to make my actual point understood, failing, and giving up. I’m not just misunderstood in a “they don’t get me” way — I, like other autistics, am consistently, miserably, misinterpreted.
They also don’t know that this is made worse by a coping method I’ve employed when no thoughts feel safe to say: asking questions. They don’t know that I’ve probably made many past friends simply because I often subconsciously, but continually, encourage people to talk; which they like at first, but that it doesn’t tend to work out well for me in the end. (It’s hard to be seen when you hide.) And they don’t know that when I listen for too long it makes my core quake and my strength deplete like I might fall out of my body, even when I’m authentically enjoying the connection. Which I very often am, my curiosity is wonderfully palpable — but after a certain point, my brain gets overwhelmed and kuputs, this is not a choice.
They don’t know that seeming “normal” requires filtering my natural expression to the point of feeling like a robot, that my smile and positivity may be for their comfort; so I don’t overwhelm them with the intensity of what’s actually happening inside me, so they don’t take it personally. Other times, I’m afraid I’ll be rejected if I don’t “shine.” (Or, reasons I’m not even consciously privy to; the defensive mind is one complicated beast.)
They don’t know that sometimes I “seem so chill” because, like many auties, it can take days to figure out how I actually feel about an event; that offenses I brush off in the moment can later lead to a perilous state. And since the frustrated energy behind it has been building up for decades, it’s too combustible to be received by the source — so that pent-up energy has nowhere to go, even therapists haven’t seemed to want to deal with it. So, the pressure keeps building. And building.
They don’t know how hard it is to function when I feel like that, especially since the motions my body asks to release the pressure with (called stims), are considered “too weird,” a sight likely to leave one perceived as unemployable. They don’t know that’s why I used to growl loudly all the time, a behavior I’m not sure how I got away with for so long. They don’t know that suppressing it is when the self-harm started, using my long nails to tear into my skin during a meltdown; causing a quick, but bizarrely soothing, rush of calm.
They don’t know the shame that pours over me when I’ve accidentally touched the broken skin, reminding me of my weakness, and of how self-destructive I can be. They don’t know about the much darker times; the plans I’ve made to leave this world, how close it’s come, nor how many times. And they don’t know that even though it keeps trying to kill me, I authentically love life, so these experiences are like being taken over by a dark and terrifying stranger.
Beyond that, they don’t know my mother chose her death, so it’s also a minefield of childhood trauma.
Coming out #ActuallyAutistic
They don’t know that since my late-May autism revelation, I’ve spent most nights awake with traumatic memories crashing into me; all the experiences that resulted in chipping away at my identity in shameful chunks, eventually leaving just tits and a smile. They don’t know how I clamored with coming out at all, how I debated if advocating for myself was worth the seeming likelihood of being societally dubbed “undateable.”
They don’t know how it felt to finally figure out why I am the way I am, to feel like I finally have clarity, some hope — after all the moves, the mental wards, the homelessness, the loneliness — just to have acquaintances decide that they know more than the professional who spent hours diagnosing me. (It must be noted that due to lack of access to professionals with up-to-date knowledge/experience diagnosing adults, resorting to self-diagnosis is a regularity in the community.)
They don’t know how horrifying it was to realize that there are people who won’t believe my diagnosis simply because of “how I seem” to them; without knowing me, without even bothering to ask one single question. They don’t know their not understanding actually makes autistic situations much worse — with some even asserting their ignorance somehow means we shouldn’t be in need of societal support. And, worse than apathy, they don’t know how terrifying it is to discover that there are people who are actively against people like me finding answers (please read).
They don’t know that after years of struggling to find an income I can actually perform, it was lost to the pandemic — or that Unemployment Insurance is months late paying, and just isn’t responding. They don’t know I haven’t been able to make rent since June and literally cannot, will not, survive being homeless again. They don’t know that this is probably a pretty “normal” state of affairs for autistic adults right now; that we’re already 2.5 times more likely to die early, and when things are dicey for society at large…they’re always more dangerous for those already vulnerable.
And they don’t know how it felt when, while dealing with all of that; a stranger shared my coming-out post, lied about a lack of professional diagnosis, then publicly proclaimed me a fake during perhaps the most vulnerable time of my life. They don’t know that a few days after that public bullying, bolstered by private interactions, I went into my second mental break — this time much more intense, and for much longer. I was on my own and cannot remember much of it, but it started after an especially heartbreaking denial of emotional support, when it felt like there were literal explosions going off in my brain; then my body started violently convulsing, which happened sporadically throughout the break. (Yes, I’m trying to see a neurologist.)
They don’t know I thought I was wandering through an afterlife, rather than through LA-county cities full of very alive, potentially dangerous, strangers (whom I was not at all shy about interacting with). The coming days brought a run-in with police, a night in the hospital, and hundreds of borrowed dollars in impound fees — but I know the grim truth is that I’m lucky not to be imprisoned, or worse.
They don’t know that the little girl who was called cruel names due to oddities (like preferring to wear only purple dresses, how horrifying) — did not stop her wide array of natural expressions so easily, not even if she made it easy on the adults in her world. That if a child acts “nice” in front of you, but then “destroys her bedroom every night, except for the time we hid a video camera in her room,” it’s more than a fucking anecdote.
Somehow, they don’t seem to know that kids grow up, and that adulthood lasts a very very long time.
People who share their autism stories online aren’t trying to prove their autism to the oddly skeptical; we are communicating with people who are like us, trying to provide and receive tools while creating community for those of us who feel like we aren’t made for this world, human beings who desperately need ways to survive within it.
So, to those weirdly suspicious of the neurodiversity community — inadvertently or not, your attitudes are helping to kill people like me. Please, for the love of all that is good, quit making it about you. Please, please, just let us be.
So, 3 years after diagnosis, I’ve figured out how to nearly squash the fibromyalgia pain that’s plagued me for close to a decade – Wim Hof and the endocannabinoid system are fabulous, as is eating/drinking intensely healthy, and exercising through the pain takes years and can truly drive a person over the edge but does indeed help wonderfully, hooray!!
But the fatigue is still there. (Esp annoying because w/pain you can just pretend like it’s not happening until you burst, but fatigue…you just can’t. effing. GO.)
Long story short, the fatigue seems to be getting a lot of help from another diagnosis; one that I’ve just received. It also explains jillions of things throughout my issues-filled life, which is a common description for independent adults with this dx. It explains why I’m capable of doing things like interviewing scientists; but will get flustered if you list stuff and expect me to remember it, struggle with regulating my emotion, and have trouble with executive function tasks. (People like me often get asked mean questions like, “how are you smart, but also so stupid?”)
It sheds light on random things like why people often misread my intentions and emotions, why I have no verbal filter, prefer to talk frankly/bluntly about things, am very interested in “boring” details, why I zone out at sparkling things/rock when I sit/spin around my apartment/otherwise ‘stim,’ why my JTT crush was so next level, why learning to drive was like explosions in my brain, why I totally lose my shit when plans change at the last minute, and even why I strongly prefer to wear the same style of shoe, daily, for years.
Today, after hours of assessments, I was officially diagnosed by a mental health professional as being on the autism spectrum.
I am autistic. Weird.
An online test given to me by an autism organization confirmed it 6 weeks ago, and talking to people with brains like mine has been eerie, like having my completely weird, largely hidden, experiences described by people I’ve never met. It kind of makes me feel less original, I thought I was so unique, haha, nope, many of my seeming eccentricities are completely normal for an autistic person – but it’s very very comforting.
Though it’s definitely been a lot to process and an intensely emotional time; knowing the whys and having tools and community is helping already, I am definitely grateful for this news.
Autism in females is estimated to be much much higher; until recently, psychologists were trained in traits that traditionally present in males, but not for typical female experiences (patriarchy, psssch), which involve a lot more masking of autist traits (vids below, any gender can have these ‘secondary’ traits/verbiage is in flux). I’ve been referring to this masking behavior as “people-pleasing” or, here “giving fucks,” as I worked on stopping it over the last decade…thereby accidentally unmasking my autism.