Slouching Toward Joy: My Best 6 Phases To An Actually Autistic Relief
Hey, if you were just diagnosed autistic as an adult… or care about someone? Still on the fence yourself… maybe you’re autistic, maybe not?
You gotta wonder what’s going to happen next. So, let’s talk about it…
🚨Content note: brief mention of suicidality, profanity, opinionated…
I got diagnosed at 63. Old AND autistic… Talk about problems with change.
I went through 6 phases. But it was all one… long… surreal… roller coaster ride. Ups. Downs. Sideways…
Now, I’m an analytical, self-reflective kinda guy. So I took notes. Then organized them. I worked with the traditional “6 stages”… but more of a “Relief” than “Grief” model.
The 6 Phases: From My Late Diagnosis to Autistic Joy
Disbelief. Waves of “That’s-Me-That’s-Not-Me.” A year or two.
I needed reassurance. Read as much as I could. Some brief counseling ended my doubt. But it took a year or two.Blame. Myself. And everybody else in my life.
I needed to be angry. I’d been living in a dream state. Decades spent blocking out trauma. Took me a year or two, but I give up on whose fault it was.Arguing. Inside. Outside.
My “autistic behaviors” increased. I stopped faking knowing what was going on. Worked on not masking. Experimented with telling folks I was autistic. Store cashiers, customer service reps, waitresses… folks I had to deal with. Another year. Mebbe more.Shutdown.
I fucking give up. It’s never gonna get better. And no one gives a shit about me… 6 months?Accommodating.
It took me THIS long to find the comfort to change. Finding one tiny change that feels a little better. Then another… Couple of years making changes for my comfort… not others.
I focused on three areas.
Reducing sensory input to comfortable levels.
Spending as much time as I need alone.
Making my passionate interests the center of my life. Not for an NFT side hustle. Not to win the Nobel Prize. For the sheer *joy* of the creative moment… the process.
More info and here.Relief.
An occasional moment. Then another… a few weeks later. Then… a life worth getting out of bed for… and moments of joy.
The worst? About 3 years in. The best? Well, right now… Call it 6 years til I tossed around the phrase “autistic joy.” Something I came to experience most days. In time.
This is my journey. From disbelief to relief. To a chance for joy.
To my fellow autists, whether you were diagnosed by a professional or your own self-knowledge… I’m sure your story is unique. So I hope this starts a conversation…
“Autistic” and “joy”? Not two words I’d ever throw together. Not before diagnosis. Not after. Until a certain blog post… which, for the life of me, I can’t find again. So details may be a little hazy…
It’s maybe 2 years after Doctor Mike diagnosed me autistic.
I’m still doing that Late-Diagnosis Hard Bop Jitterbug in my head. To the beat, “So-Maybe-I-Am, And-Just-MayBE-I’m-Not.” Hopping from one mental foot to another. Always landing on the wrong offbeat. Flailing around off-balance…
Great. Maybe I am officially autistic. My life still sucks…
So… yet again I’m buried in a blog post on autism. Grabbing a few minutes madly scrolling my phone in the car. My wife’s running an errand in JoAnn’s. We separated the year before but became friends again. It’d be another two years before we regroup as a couple.
In this post, a young autistic software developer talks career struggles. Mostly, other humans.
Toward the end, she drops a notion new to her… autistic joy. And how… surrounded by all her difficulties… she was struck by the joy in moments she spent alone, focused on coding. Probly Python…
Joy? Seemed ridiculous at first.
Most blogs? I read “burnout”… and I nod my head, “yes.” Failing at parties… I nod my head. Following all the rules, still failing at everything…? Freaking bang my head.
I made 3 trips to the psych ward in my life. Ya know, suicide watch. Autistic joy? That’s wack. Cringeworthy… But something about her article stuck in my craw.
I hit Twitter and search “autistic joy.” Bang. Jen White-Johnson, an Afro-Latina artist and educator. She moves me when she writes about her son Knox. Especially his infectious joy in his interests, his triumphs, the weather…
Something called to me… Forgotten memories…
3rd grade, just me and my chemistry set in the basement…
2nd-grade library, sitting alone, devouring mythology & juvie sci-fi…
Collecting polliwogs on a brisk, early-spring morning, I’m 9…
Dancing in every rainstorm til at least 7…
Ya know, joy was everywhere when I was a kid. I felt it. I blurted it out to anyone who would listen. Say, about my realistic dinosaur models…
But they always walked away. Eventually…
It seems my joy wasn’t the right joy. Wrong reasons. Too loud. Too long. Unacceptable. To anyone in my life.
So I learned to ignore my joy… deny it…. forget it.
So, my first step on the journey. Focusing on memories of what once made me happy… and increasing that… now.
Then, dropping “shoulds” that I could never hope to achieve.
Which led me to examining everything and everyone that made me uncomfortable… and reducing contact with them.
Look, I’m not out to blow toxic positivity up your pant leg.
Not every autist will run around turning handsprings, singing the “Hills are Alive.” And no one should imply that any autist who doesn’t experience joy is somehow deficient.
Trauma, disability, poverty, prejudice… these can crush joy in any life. Beyond any human effort.
Whatever our similarities at birth, our lives make every autistic person different.
Some autists pretty much always knew. After diagnosis? They carry on.
Some may feel surprise at first, but then great relief. Their lives finally make sense!
For some, finding other people who actually think and feel like they do? That’s immediate joy. Cuz… Who the freak knew.
But my tribe? We scour blog posts. Download podcasts. Flick thru videos. Binge Neuroclastic… Search for signs. Symptoms. Diagnoses. Anything written by a “real” autist. To ease our pain, confusion, anger…
Our ritual greeting might be, “How long’s it gonna take? To just feel OK? I don’t know if I can hold on… Oh, and btw, how’s by you? The family…?”
We need help. We need reassurance. We need freaking hope… And sometimes, official diagnosis doesn’t help at all. It just makes things we’ve been dodging all our lives…
Um, painfully clear.
Please note this is only my experience. I have no intention of creating a system. Rigid symptom lists and recovery systems?
Despite everyone’s best efforts, they become goals to compete… or fail at. Opportunities for folks to feel better than… or worse than. Opportunities for webinars. Books. Counseling. Professional fees.
I only write what happened for me. And hope reading it helps you reflect on your journey.
But I suspect joy is our birthright. It’s in our wiring. There for the taking, if…
If we’re not overwhelmed by abuse, pain, illness, loneliness, poverty, bigotry, disability… societal prejudice.
We are hard-wired for joy. Could be all humans are. It just so happens that autistic joy… and the things that invoke it… are different for us than for other humans.
How long does it take? Autistic joy is not a goal you reach. A state you achieve. It doesn’t solve all your problems. It’s not like enlightenment or anything. For me anyways.
I still fight doubt, depression, difficulty functioning. But my life now? A shit-ton better than, say…
2nd grade…
Jr High…
My teens…
My 20s…
My 30s…
My 40s…
Nearly all of my 50s…
Turns out when the chaos dies down…
when the silence creeps back in…
when the stims and passions come out to play…
again…
Joy dawns…?
One last story.
I’m one of those special screwballs who chased sainthood my whole life… Which is pretty funny. Considering a lot of things I’ve done. And “grew out of.”
I was a Catholic thru 7th grade… then rabidly started chasing gurus… and enlightenment.
Which is another metric-shit-tonne funnier. Considering the lack of self-knowledge I possess. After decades and decades of meditation. AND autistic review & re-review of every conversation… every note… EVERY party.
But I know from the drive for perfection.
Let’s say…
I’m 70 now. Happiest time of my autistic life…
Not too worried about some fabulous unachievable autistic Nirvana these days.
Here’s the story…
When my grandfather used to take me sailing out to Montauk Point…
a sea journey from Bay Shore, Long Island…
at least as he sailed it on the ocean side…
swinging out into the deep water…
In his telling, it was a fabulous place.
Where the trees grew slanted from the constant offshore breezes.
The grass on the golf course grew sideways.
The constant wind carries all the sound away.
But its constant roar in my ears creates a kind of hushed silence
inside me…
I always experience high anxiety as we lose sight of the shore. Just sky, waves & constant rolling. Disoriented. Like a whiteout in a blizzard. If you add in some seasickness.
But after an hour or so,
I make my way to the prow.
And sit.
Wind on my face.
Sun on my body.
Salt breeze filling my chest…
Quieting my heart.
Anxiety? Disorientation?
I stop caring about the shoreline. And the anxious life waiting for me on the other side. For hours at a time.
Who cares about sailing toward Montauk and its fabulous trees… anymore…
Or ever again?
I’m busy breathing in…
this
moment
Coming soon as an AutisticAF.me podcast & YouTube segment.
BTW, I have a new podcast episode out, “Authentic Autistic Life: 4 Short Stories Fearless, Joyful and Chaotic. s03e02.” Text/transcript, audio, and captioned video.
Support AutisticAF.me here: Paypal · Ko-Fi · Facebook Pay “ Johnny Knapp Âû “
