Season 3’s mission? To boldly explore living authentically autistic… out loud. Carving out a safe space to be our true autistic selves… a big part of that quest.
🚨Content note: strong emotion, profanity, opinionated, disturbing images, mental illness, death…
Intro
Here’s AutisticAF Out Loud, Season 3, Episode 2…
4 stories. But, right now? I’m hot to spill the first. So, let’s jump right in…
And talk later…
I call this one, “How To Be Strong, Fearless & Actually Autistic… Online.”
Cuz that’s what I wanna be.
Hey, do you feel safe on social media… openly autistic?
Hate speech. Bigotry. Cyberbullyies… Then facing your inbox. Scams. Creepy strangers “contacting” you…
For what? So we can kayak the white waters of stone-cold, ableist judgment. And its kissing cousin… humbug condescension.
Cuz folks “just wanna help.”
It DOESN’t have to be this way. We can build our own village. Folks we like to hang with. And who like to hang with us.
Choosing to not please everybody is a fearless act. And it hasn’t shrunk my world.
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I’m in a great Facebook conversation. With an autistic Trump supporter… who’s making me think.
Love it.
NOT how it usually goes. The insults, mockery… and ultimate weapon…
BLOCKING.
But with this friend? She knows I’m a socialist. I know she’s Libertarian. But we trust each other not to cause pain. Rare for me…
See, like some autists, I’m not great at back-and-forth.
I can hurt feelings. Or come across like a know-it-all. Last thing I want. I love people. And grok the pain condescension inflicts… firsthand.
So… I don’t try to convert anybody. To anything. Not online. Not in real life.
When I encounter hostility? Rivalry? I choose to not escalate. I choose the least hurtful path for me… and others.
I walk away.
Unfriend, mute, block… whatever it takes. And put my energy into finding friends.
No law demands we please 8 billion people.
Or prove anything.
Meet any standard.
Represent any movement.
Agree with anyone…
Not even another autist.
Remember being a kid? Pressured to make friends… with everybody?
We. Don’t. Have. To Do. That… Not anymore.
We can enjoy social media any which way we freaking please. With people who please us…
Cuz that perfect meme EVERYbody likes and shares? Never gonna change the planet. Maybe honest friendship will.
Further Reading
“Using Social Media on the Autism Spectrum”
https://psychcentral.com/autism/using-social-media-on-the-autism-spectrum#social-media-drawbacks
Intro
Season 3’s mission? To boldly explore living authentically autistic… out loud. That first story? Living fearless online? Carving out a safe space to be our true autistic selves… a big part of that quest.
If you’re autistic, love one, work with some… or just can’t figure out if you ARE one…
Story 3 tackles maintaining career & home life… as vital adult skills appear and disappear. The wild ride of autistic “variable ability.”
And we end with a quickie on how… and why… Hollywood taught us precisely the wrong values to live a real autistic life.
But right now? I don’t wanna talk challenges, problems.
I wanna talk joy… Autistic joy. And 4 ways I rediscovered mine…
Rediscovering Autistic Joy: My 4 Easy, Shameless Ways as an Autistic Adult
Hi, I’m Johnny Profane. I’m an Autistic Elder. 70.
Wanna know how I rediscovered my Autistic Joy?
Most powerful thing I’ve ever done… to better my autistic life.
In the end… it meant doing MORE of so many things… Things parents, teachers, pastors, pros told me I must NEVER do.
Now… I examine forbidden things first. Who made the rule? Who benefits? Who’m I hurting if I break it?
A long path. Slow at first…
Faster & faster… the more joy I experience.
Looking back? The concept… easy. The practice… hard. At first…
Type your email…
I hunted for joyful memories. What was I doing? Where was I? How old? Who was there?
I have a cinematic memory.
I relive scenes… in the moment… to remember. Actors, Images. Setting… buildings, furniture. The light. What I wore. The soundtrack. The dialog. What I felt like in mind & body. Facial expressions, gestures…
Most were early… before 10. And they centered around nature, my hobbies, interests…
And being alone.
I’ve made some important principles… for myself.
- reducing sensory input to natural levels,
- daily “nature baths”… light activity in wild surroundings,
- ferociously rediscovering my childhood interests,
- structuring most of my time around solitude… without shame.
But hard as I’ve worked for 6 years to make my life work… in joy…
The topic sentence came to me just this morning. Figures. I’m like that. A slow learner of new thoughts…
The greatest pleasures in my life… the only things that get me outta bed in the morning…
Uninterrupted moments…
- no anxiety,
- silence, and
- focused attention on something, ANYthing that grabs my interest.
Every tiniest step to reduce anxiety… whether caused by senses, decision-making, social interaction…
Every excuse for more silence…
Every time I prioritized my special interests over everything else…
My autistic joy grows.
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Not been easy to unlearn this much.
To listen to my own voice more than “experts.”
Accepting that my own goals have little to do with consumer society.
That there is no shame in solitude.
Hard work, But f***…
Has it ever been worth it.
Autistic Joy.
I opened a door that I cannot close…
To a path I can never turn my back on.
My hope for you…?
You find yours.
Midtro
Next up… What’s #autistic variable ability feel like? My skills, energy, focus, interest…? Materialize & vanish at whim… like ghosts.
How’s THAT feel? Do I have stories… from classroom, office, home…
And we’ll dive right in… after this quick word from our sponsor.
Cuz I got bills to pay…
[advertisement]
I call this one, “My Adult Autistic Super Powers Vanish like Schrödinger’s Weird Cat.”
Cuz they do. And then they don’t. And then they do. And then…
You get the idea.
Phone’s ringing.
I roll over. Crack one eye. Peek out a window into glaring sun.
Noon…?
Phone’s still ringing.
Woke me up, but I can’t face it. One of those days.
Autistic burnout… been in bed 18 hours. So far….
It’s 1988. I wait for the answering machine to do its thing…
Sigh. Push the button. Then…
“What’s the fucking deal…?”
Screaming on the other end.
I’m writing copy for a catalog. Dave? The guy leaving the message? Trying to sell New Age crystal jewelry. To folks who already have too much money…. on their hands.
And… at the moment… he’s not feeling that “universal harmony” vibe.
“What’s the holdup? We gotta go to press. No more excuses, Knapp. We gotta go to press.”
Quick breath. Then motors on, “You came highly recommended. Prize-winning copy, my ass. You on a bender? Drugs?”
One final hiss, “Call me. NOW.” Then bangs the phone down in my ear.
I’m 2 weeks late delivering copy. Got a hefty advance. So I got NO excuse.
My solution? I yank the plug out of the machine.
Roll back over. Never call him back…
Not booze. Not drugs. Just a little ole autistic “variable ability”…
See, I got this problem with commitment…
I can NEVER predict when… or if… I’ll get any project, any PROMISE… done.
Cuz I’ve NEVER gotta clue… what I can do… when.
Ever hear of Schrödinger’s Cat? That physics thought experiment?
There’s this cat in a box. And you can’t tell if it’s alive. Not without peeking. Something about quantum particles popping in and out of existence…?
I hard relate with that cat.
This character you know, “Johnny Profane Âû”… What I like to call my “functional” better half…
Phases in and out of existence. Ya know, like quantum shit.
So call me Schrödinger’s Autist…? That’s a mouthful.
Is the cat alive in that box?
Am I…?? Never know for sure… at any particular moment.
Pros call it autistic “variable ability.” So bland. So clinical. So professionally obtuse…
What’s “variable ability” feel like?
My skills, energy, focus, interest…? They materialize & vanish at whim… like ghosts.
Yanking my autistic life up, down, sideways. A crazed puppetmaster jerking my strings.
How’s that feel? From this side of the box? Inside?
Frightening. Crazymaking. Maddening. Unfair…
Like a brown… specifically-not-too-good… acid trip. That just won’t end. No matter how many shots they give ya.
Over and over. Year after year. Career after career.
👉Not every adult autistic person has this problem. Not even all 70% of us who are also ADHD. Links in transcript. [here (https://t.co/V5LHNOj8w4 and this (https://t.co/8DP7K8HXQY))…
But for some of us? It wrecks careers. Withers relationships. Ends lives…
Getting things done… on a schedule?
Total pipe dream for me.
Papers for school.
Business plans for vulture capitalists.
Applications for Foodstamps.
Favors for friends.
Honey-do lists for… well, honeys…
Even among the weird… I imagine I’m legendary.
Now… “Burnouts,” “shutdowns,” “variable abilities”?
So common, they’re like autistic folklore {a poem}. Lotta chatter about ’em. But it’s not clear whether we should lump ’em all together.
An autistic shutdown? For a few minutes, hours… mebbe days… I need to seek out quiet, darkness, and rest. No work. No contact.
Sometimes it’s an immediate response to one overwhelming event. Sometimes it builds over time. My mind, body & heart… exhausted.
Now, burnouts… An intense, long-lasting exhaustion. Weeks, months, years… Most autists report a general shutdown. Impacting work, social contact, and home life. Trust me…
But sometimes I lose just one specific skill. As if a single brain center fritzed out…
Example. The times I can’t speak… sometimes for hours. Pros call this “selective mutism.” Or many now say, “situational mutism.” Which seems more accurate, less judgmental to me.
But like speaking, I can lose other… vital, adult skills. For moments, weeks, months.
Like Musician Me. Days before a gig, sitting on a stool, hugging my guitar of ten years… For the life of me, I can’t remember how to play it. Or sit and hold it…
That time freaked me out so much, I gave up live performance for a few years.
Or back in 2005… Technogeek Me startles my second wife. She’s sitting in the recliner next to me.
I shout out, “I can’t remember how to use this damn thing!”
Frantic, I’m waving my Palm Pilot in the air. A device I’d been getting paid to code apps for… the last two years.
Til I missed one too many deadlines and lost the contract… Lost the wife, too.
At times, I forget how to walk. Out of the blue. My posture and gait demand intense focus to maintain. {“Designing My Home around Adult Autism“}
Are these all the same thing? Even related?
There’s precious little research on “variable ability.”
Mebbe it’s a specific kind of exhaustion. Of speech, social, or other brain centers.
Mebbe it’s psychological… inhibitions born of trauma. Trauma is endemic in our autistic community.
I experienced physical, emotional, and sexual abuse. For that matter, I was in what many call a “cult.” What I call spiritual abuse.
But I can’t suss it out… from my side of the skin. Are these waves & troughs of functionality different from other trauma survivors?
Mebbe it’s what some pros call “adult autistic regression.” Which may be like childhood autistic regression. When a kid temporarily loses speech or social skills. Usually during stress or illness.
Mebbe, just mebbe this is an area researchers could really improve our lives in.
Instead of precisely measuring milliseconds of eye contact…
Heard of the “monotropic mind hypothesis”? It was developed by actually autistic scholars.
In their experience, autistic minds focus on only one or two things at a time. And have difficulty switching from one to another. They use this insight to illuminate autism. Links in transcript. [Revisiting monotropism, https://www.autisticscholar.com/monotropism/]
It might explain my personal experience. IF… I extend it beyond thoughts, tasks & perceptions… to abilities. Mebbe entire brain centers of activity.
See, I experience my mind as a bunch of competing, quasi-independent centers…
Senses,
Emotions,
Intellect,
Internal awareness,
Language,
Sense of self,
Memory…
others.
Each squabbling… competing for limited bandwidth… And attention.
I can only manage to be aware of one or two of these things at a time… and dimly, if at all, aware of the others.
Let’s say, I can walk… but gum-chewing at the same time? Or talking? Or knowing my emotional state?
Um… No.
Like that, I can write, compose & play music, voice act, paint… at a semi-pro level.
But in any given period of my life, I can only actually do one at a time. I mean, as in 3-month-stint painting… But I can’t keep up my writing, playing music, or bread baking. For three months…
So I live with two problems.
Losing a skill in the moment… say, situational mutism.
But also longer cycles. Some skills come… some go. Like seasons?
Between autism, trauma, and my aging brain… I only have short bursts of creativity & clarity. A sort of involuntary Zen living-in-the-moment.
But I have some g r e a t moments. More all the time…
Sometimes, it feels like I can DO almost anything… One thing at a time. I just can’t predict when.
So you shouldn’t count on me for much of anything… At least, not at any particular moment.
And, especially… if you’re that guy… Dave…
Midtro 2
Okay. A last quick one for the road. Next episode… more autistic joy, creating authentic autistic education, and a winking-emoji look at social norms… from my cock-eyed autistic perspective.
But right now? I wanna talk movies. Just a few minutes. But some hidden surprises…
I dunno about you… but I majored in Escaping Reality in my formative years. So my role models? Heroes in Comics. Books. TV. Movies.
Problem is, pop culture sells unrealistic fantasies. As sacred duties.
Nothing that screens ever showed me… prepared me for an autistic life.
I call this one, “Promising Me Beautiful Lies: How Hollywood Failed My Autism.”
Cuz man, they really screwed with my head…
I remember a lot of movies & TV in my life. I gotta believe more than most of my generation. Except maybe fellow autistics.
Why…? School, home, family, nabes on my block, church… Gobs of stress in my early autistic life.
So, naturally, I spent acres of hours escaping reality.
Either nose-planted-in-book… or eyes-glazed-on-screen. Zoned-out, dissociative trance.
Star Trek “reboots” by the light-yard…
While other kids were hitting the playground. Learning to pick sides, squabble, fib politely… fight… kiss… and make up.
I remember constant struggles with my parents.
Cuz with rare exception, I preferred reading by myself in a library chair. To any human’s company. Especially science or art…
Socializing? Just another parental duty…. To make friends.
Another parental disappointment… To make friends.
Like you can actually force anyone… To “make friends.”
SO, I modeled how to act like a human… honestly, a learned role for me.
Hollywood… like any predator… or cult leader… smelled my weakness. And was happy to rush in and fill the hole in my life.
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Now, humans in movies are easier to understand…
for this adult autistic kid. Than the folks, say… I live with.
Because movie acting is not natural. Not even those Oscar-winning turns of Meryl Streep or Jennifer Lawrence.
It’s highly stylized… Slow. Exaggerated. Lots & lots of long significant “looks.” A “quick read.” To make sure audiences know what’s going on.
Then… There’s the supporting music and camera work. They telegraph what I should feel. And how to interpret actors’ motivations.
No way, no how like real-life humans.
Whose conflicting actions and words bewilder me.
Cuz actors get PAID to put across what they’re feeling. But flesh-and-blood humans sweat blood to keep their hearts… and agendas…
From me.
And ya know? A dark theater is a pretty safe place for strong emotions.
Surrounded by the comforting presence of humans. Who can’t see me. But share the same experience with me…
For once.
So what’s the problem?
Hollywood sells flattering lies.
Spinning unrealistic fantasies of wealth, power, and breaking taboos.
Ordered up by Madison Avenue ad agencies…
They tell us we can have it all. Riches. Romance. Effortless witty comebacks.
To keep us yearning for unattainable ideals. And buying gizmos to fill that hole.
Nary a whisper on how to slug it out at the office. Tougher yet… the family dinner table.
Nothing that screens ever showed me… not fucking “reality” TV… prepared me for life.
Not an autistic life.
Especially not…
A human…
slowly turning toward the camera….
and telling me exactly…
what’s on their mind.
Never, ever happens on my block. Not my nabes.
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Authentic Autistic Life: 4 Short Stories Fearless, Joyful and Chaotic, s3e2 – #AutisticAF Out Loud
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