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Hi! I’m Johnny Profane.
Welcome back to Autistic As Fuck Out Loud. This episode I talk aging as an Autistic Elder.
Getting finally diagnosed at 63… only to face mental decline as I hit 70…?
One Swedish study pegged autistic male lifespan at 53. So I’m living on 17 years of borrowed time, I guess… so far.
If you’re autistic, love one, work with some… or just can’t figure out if you are one…
There’s gonna come a time you worry…
Real talk. About real life.
Cuz they ain’t talking autism in AARP… yet.
I call this one, “Look Doc… You Just Don’t Get #AutisticJoy.” Cuz… they never will.
“Hon… It’s as if I’ve lived my whole life backwards!”
So we’re waking-&-baking… And I had one of those moments. That undeniable experience of clarity… you wish ANY drug could provide. Reliably.
See, I had my annual Medicare health check yesterday. Turns out I’m not senile… as measured by a mini-mental test… a definite cause for celebration.
Cuz about a year ago… I had a scare. And wrote about my fear of oncoming dementia.
For some months, things took a dark turn.
More depressions… longer… darker… more frequent.
Bouts of distrusting friends, suspecting motives.
Feelings of sinister irreality.
And my mind fading…
Difficulty finding words…
Persistent fatigue — mental, emotional, physical…
Losing phone, keys, wallet…
There was no question I was changing. Folks close to me made… cautious… comments. My wife & I began to whisper… “What if…?”
So what good news did the Doc have for me…?
Yeah, I can still draw a clock face. And remember Biden’s still president. About all you need to pass a Mini-Mental screen for dementia.
But they do a depression screening, too. And, that’s the story I really want to tell…
Let’s say, I was a tad too autistic for my own good…
I told the truth.
One question after another… each too broad to have any meaning in my autistic life…
”In the last 14 days…
have you been sad…
slept more or less…
thought you might be better off dead?”
One multiple-choice answer after another. To sort my 3-standard-deviations-into-the-autistic life into the right box…
”Not at all
a few days…?
half the time…?
most of the time…?
all the time?”
My one simple answer… over & over.
”Yes… A few days.”
The nurse looks more & more uncomfortable… As she checks one symptom of clinical depression… after another.
I’ve spent decades lying to medical professionals at this point. Giving them a socially acceptable fib… to get through an awkward moment.
I’m sick of it.
So I tell the truth. What’s to lose at this point…? I’ve walked out before on doctors, nurses, dentists. Without going into total meltdown…
And I’m gonna tell you just what I said… Right after this brief word from our sponsor… cuz, ya know, I got bills to pay.
Did you know most folks check out 5 episodes of AutisticAsFuck Out Loud?
If you found something valuable… a tip, further reading… or that shock when you realize you’re not alone…
You can help with my work. I offer all my autism info for free. But expenses run about $175 bucks a month. A few bucks make a big difference.
Every dime goes towards this podcast.
So I focus intently on my nurse’s left eyebrow… ya know, faking “genuine” eye contact like some autists do.
“I’m being honest. And I’ve been in the therapy business. That scale, that test won’t tell you what I need you to know… This is the best time of my life.”
She looks startled. A confused smile…
“No.” I wave my arms. “Not kidding…
“Yes, I have suicidal thoughts a few times a week. Yes, I’m in the middle of a podcast that’s desperately important to me… but I’m frozen and I can’t finish it… no matter what I do.”
Even I have to take a breath. But I plunge on…
“And dealing with the fact that
I have NEVER been able to count on my mind or body
to allow me to complete ANY important project on time…
in my life… is very…”
I search for the least “pitiful” word I can find… quickly…
OK. I begin to tear. But I don’t get embarrassed. Not any more.
I finish in a rush, “It’s not every day. And I haven’t been hospitalized in 6 years… maybe 7? I forget. I’m actually completing more work… that’s important to me… than at any time in my life… I have joy more than a few times a week. And I have love… every day.
“So, I’m okay. I’m better than okay. I’m great.”
“That’s why I need you to know… I don’t care what ‘score’ I get. I don’t want intervention. And I don’t need treatment.”
That was just fine by me.
Here’s the deal…
If you’re autistic… or care for one… I need you to know… Only a few pros have ever understood my needs. Over 5 decades of seeking help.
BECAUSE PROS ARE IN-DOC-TRINATED TO DIAGNOSE AND CHANGE BEHAVIOR… NOT IMPROVE OUR INTERNAL, AUTISTIC EXPERIENCE.
Basic translation? They learn to observe whether you “function”… function… as a normal, productive citizen… You hold a job. You go to parties. You wash your privates every day…
Can you work? Or are their tax dollars gonna support me?
“Are you a team player? Or gonna be a problem?” “Can you take care of your self? Or will you embarrass us?”
The basics for surviving the modern, factory-like culture of education and employment.
So, Any annoying behavior that upsets “production”? They say…
“You need fixed. Probably medicated too.”
Hard to believe? Check out the two “tests” most medical or therapeutic pros use: Global Assessment of Functioning Scale, or World Health Organization Disability Assessment Schedule 2 (WHODAS 2.0). Links in the transcript.
Neither measures my Autistic Joy. Or even asks about it.
Hyperfocus…? DOESN’T need fixed. I live for the intense joy… hour after hour writing, painting, even housework.
Stimming…? DOESN’T need fixed. Whether I’m soothing anxiety… or celebrating delight.
Any reasonable measurement of autistic well-being wouldn’t diagnose these. The only “problem’? If they aren’t in my life.
NOT if they disturb the guy in the next cubicle…
Any “pro” who gets in the way of that? They need fired.
Getting back to living backwards…
Most folks feel they achieve their best in their youth. Then comes the slow decline into doing less… and less… as they age.
As if humans fade away. Into memories of what they once… did.
I’ve fought to survive autism… in a world hostile to my mind, heart, and soul… My entire life.
So I pat myself on the back for being this awake after 6 decades of abuse & trauma. So I shake off the nightmares that kept me company last night. And the anxieties that woke me up this morning.
They’re just old friends I endure once in a great while…
Because in the last 10 years…? I began winning that fight. At last.
This… THIS is the most joyful and productive time of my life. Even as I report I’m only productive a few days a week on average.
It may be a cold and a broken hallelujah… But it’s DEFINITELY a hallelujah.
Thank you… for being alive when I am. And sharing these bits of my life with me. Means a great deal.
The older I get… now? The better I become.
Not for the faint of heart.
But a fight worth living.
I bet you’re wondering. What was the explanation for the months of genuine decline I experienced?
Not mental illness.
Not Covid… long, short or in between.
Almost certainly my self-imposed, year-long Covid lockdown.
I’ve definitely aged. I definitely notice some memory and attention changes. But I’ve walked and exercised most of my adult life. For over a year, all that stopped. And I rarely left my house.
Over the last few months, as I’ve renewed my activity…The worst of the symptoms cleared up.
So my fears of dementia? Likely another of my mistakes you can learn from…
At least for now. I’ll keep you up to date.
Thanks for listening! I love your comments & emails. From autistics that recognize similar experiences… Loved ones with questions…
Quick reminder. Find #AutisticAF Out Loud podcast on Apple, Spotify, and most podcast platforms. YouTube episodes feature closed captions to support folks with audio processing difficulties. Like me.
The blog at Autisticaf.me has all the transcripts… and more posts.
I mentioned hitting the support button or the transcript links to support my expenses.
But… as always…
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