Authentic Autistic Life: 4 Short Stories Fearless, Joyful and Chaotic, s3e2 – #AutisticAF Out Loud
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My relationship with Anxiety…complex. Can’t live with it. Can’t function without it…
NOTE: Some autistic & ADHD folks process reading better, some listening… some both at once. So I include a transcript, podcast, and “pretty” captioned video below. #InclusionMatters.
Intro
Hi! I’m Johnny Profane.
Congratulations… You made it!
Welcome to our final installment on autistic sensory overload, stimming, and anxiety.
What better day to talk autistic anxiety… than Colonialist Thanksgiving?
Sold as a comfy celebration of your clan. Fond memories. Traditional tidbits. Hard cider around a roaring fire…
But for many autists? A freaking minefield. Social obligation. Exhausting small talk. Grinding anxiety.
Anxiety & me…? It’s complex. Like that partner you can’t decide if you hate… or can’t live without.
So I call this one… “Confessions of an Autistic Anxiety Junkie.”
If you’re autistic… you may wince… mebbe chuckle.
If you love an autist… parent one… work with some… or can’t make up your mind if you are one…?
Come visit a world where Black Fridays, get-togethers, office parties? Not all cheery & gay.
Real talk. Some… a tad edgy.
But maybe… some things to help you understand. And share with family members who… care.
Episode
“Wow,” says Doctor Mike.
“Do you realize how many neurotransmitters you just burned up?”
I’m gonna hit pause right here. Let me rewind. Catch you up to speed…
So… Five years ago. I’m seeing a shrink for autism-related difficulties.
Five minutes ago, I asked him a question. See…
There was this confusing conversation I had with a friend. I want to figure out where I went wrong. Ya know, get tips for next time.
“Well,” Doc says, “you know the drill. Give me some idea what happened. But more important, tell me what you felt.”
I saw the Gates of Hell yawn before me…
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I try to avoid trouble. So I always shoot for the shortest, simplest, least detailed answer I can swing.
I always miss.
I begin telling him the wheres and the whens.
The scene flashes in my mind’s eye…
- The dark wooden room.
- What I’m wearing.
- Traffic noise outdoors.
- Cooking smells from the kitchen.
- The incomprehensible mini-grimaces on my friend’s face.
- The slow storm surge of competing emotions I’m feeling…
- eagerness,
- disappointment,
- confusion,
- anxiety,
- anger,
- rage…
- tongue-tied, I’m-gonna-die PANIC.
I guess I talked louder. Angrier. Faster — finally stammering, stuttering…
“Are you okay??!” He stops me. I’m startled. I haven’t told him anything yet…
“Why?” I ask, flipping right back into my routine conversational voice.
Doctor Mike looks… worried?
It’s not like I was loud or angry… back when I spoke with my friend.
But the way my memory works? It’s a process. To tell him my story, first I called up images, sensations, surroundings. Then feelings… Even some I held back at that time… anyway.
Strong ones.
I guess, my “tone of voice”… um… transformed. It wasn’t my carefully crafted, Therapist-Approved,™ hushed tones… not anymore. Definitely NOT my good-client mask of “intellectual curiosity.”
Oh…. n o o o o.
I went straight for raging, ranting, lunatic. Loud enough to echo into his waiting room. I guess.
Dr. Mike sits forward in his chair.
“What was going on for you right now?”
I knew I’d “done something wrong.” In therapy nearly 30 years. Gets so you just know.
Me, meekly… “I was remembering what happened and… trying to tell you.” I feel guilty… and suddenly so tired, my eyes ache, just trying to keep them open.
“And now that you’re done remembering… you’re calm again…. Hmm.” He looks off a moment. “Are you telling me you were actually reliving that moment… so you could remember?”
“Um. Yeah…” I said, “How do you remember?”
Apparently, not that way…
Dr. Mike gives me a quick info dump…
- dopamine, serotonin, norepinephrine…
- how, because these neurotransmitters are precious, complex biochemical hormones,
- our bodies exhaust huge energy using them up…
- and and creating new ones.
Then he said I’d used up so much, my mind and body were falling into collapse. A mini-autistic burnout.
He says, “How often does that happen for you?”
I say, “You mean, like, how many times a day…?”
So… we went on to talk self-care…
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But something ELSE was going on besides social anxiety. Something else was eating at my craw.
I replayed that session over and over in my head. I do that when I smell something that might mean something… that I can’t see. Yet.
Weeks later… talking to my wife… I knew.
Why, so often, do I get loud or passionate or angry… when I try to say something original…?
I’m getting a fix of my favorite drug to give me a boost…
And it has side effects.
See… today I’m not chasing the autistic “memory” or “awkward communication” butterflies. I’m chasing the elephant in the room.
Anxiety.
So, please allow me to begin again…
Hello, I’m John. I’m autistic. AND I’m an anxiety junkie. This is my story…
You won’t find anxiety listed in the manual for autism. But I’ve yet to meet an autist who doesn’t struggle with it. At least none trying to make it in the work-a-day world.
Anxiety is more than something I suffer. I’ve come to realize it’s a drug. That I use. And abuse.
Sorta like caffeine… if caffeine were meth.
Like some autists, I have difficulty waking up. As in, I may not grasp most of what’s going on… the first few hours.
I may be hazy on where I am. I may lack the energy to do… anything. I may find speaking… hard. Even in short sentences.
Why use two syllables if I can get away with one…?
There are labels for this. Sleep drunkenness or confusional arousals.
So I drink coffee. Caffeine helps.
But like any substance I use to alter my mood, it has downsides. Too much triggers edginess. And, unfortunately, it’s addictive. So I use more and more to chase the same high. Right up to the point that I use… too much.
I believe that I use anxiety neurochemicals the same way. I first noticed it with procrastination.
Since junior high, I waited later and later to write term papers. In my early teens, hitting the encyclopedias less than a week before the due date. (Old skool, pre-dating Google.)
By college, I was smashing a semester’s research and writing into 36 hours of sustained effort. At first, every single waking hour over 3 days. By senior year, starting midnight Friday and finishing dawn, Sunday morning.
No meals. Only necessary pee breaks.
Grad school? Starting the day after a paper was due… handing it in a week late. Taking the grade cut.
In the end…? Flunking out. Not because I was lazy, stupid, disorganized… whatever.
Because…
- I needed ever greater doses of uncut FEAR
- coursing through my veins
- to have enough ENERGY
- to slog through details,
- make decisions,
- choose words,
- create topic sentences,
- and order a logical flow.
Without fear… I couldn’t think.
Late in life, I began to suspect that… without anxiety… I can’t relate to other humans. Even loved ones.
Not at work. Not at parties. And… trust me… not at family holidays.
A single case makes the point. I love being alone. And, G-d knows, I love being with my wife.
But…
If I spend a long time alone…? Say she visits family for a day or two? It’s as if my emotional and expressive centers power down. She comes home to a husband quiet, bleak… curt…
Until…
The anxiety of the social awkwardness warms up my inner radio tubes. “Friendliness” seeps back into my brain and I’m back to “normal.”
At some point, I realized I need anxiety to have the energy to communicate much… at all. Including writing, by the way.
People who first meet me have the impression I talk a lot. And I do…
But…
A LOT of what I say are…
- short memorized phrases,
- sayings,
- repeated jokes,
- pop references,
- quotes,
- canned bits of trivia,
- slight re-wordings of what you said a moment ago… my form of echolalia,
- all delivered in Jim Carrey-like tv voices.
In other words, camouflaged autistic behavior. That conserves my energy in social situations.
Anyone could see it… Say, if I repeated a few dozen phrases all the time. Instead of the hundreds, even thousands, I use.
Still, anyone who begins to know me notices… in time.
Like those thousand or so background music hits you hear in Walmart. My repetition can tire folks out.
My point?
That topic sentence swimming up from the depths of detail I’m drowning in?
To actually create more than one or two original sentences at a time? More than I can do. On a good day…
Unless…
I’m pumped up… on anxiety, or its twin devil spawn, fear and anger.
It is true that sometimes, too rarely in the past, the experience of explosive autistic joy can get me where I need to go.
Also true, in the last years since diagnosis, joy is coming more and more frequently…
But bottom line?
I live for loving and creating… I have trouble doing either without twisting the dragon’s tail of my anxiety.
Permitting it. Even coaxing it.
Anxiety was once something “bad” to me… avoid it like the plague.
But I’ve come to a value-neutral view. Like most of my traits, it can be a strength… or a weakness… in the right place or time.
So, like any junkie, I shut up. And pay the price.
So appropriately enough…
I got a family get-together to get ready for. I’ll keep it short…
I hear from parents… and adult autists… daily. As this podcast grows, I am so thankful I’ve touched hundreds of lives. And they’ve touched mine.
But this holiday season, I make a direct appeal. I need your help.
If you enjoyed this episode? Please click the “Support” button. On Apple, Spotify, wherever you found #AutisticAF Out Loud.
Any amount will go straight to my autistic activism.
But… as always…
The best support you can offer…?
Share this episode with a friend that you know… cares.
An earlier version of this episode appeared in Neuroclastic.
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