Perfectionism ain’t working for me… maybe not for Autistic AF dot you, either. So here’s something, shall we say, a little “rawer” than my usual /rant…
Read it on Medium.
There is more to autistic experience than I have words… for you.
There is more intelligence in my autistic mind than I can speak… when I talk to you.
There is more going on in my body than I’m dimly aware of.
But my autistic soul? I’m guessing that’s as infinite as any soul a typical doctor possesses. Maybe more so…
Say, like the doctor I happen to be talking to.
In the compressed time that I experience…
spinning around the emotional black hole…
they call the modern family physician checkup.
I need to rant about yesterday’s doctor visit. And how it echoes with dozens of experiences I’ve had with helping professionals. In my rather long autistic life.
If you’re curious about the hurdles autistics face in healthcare… or if YOU ever felt misunderstood by a doctor, you won’t want to miss this. And hit “subscribe” to keep these stories coming… for free.
For me? 15 minutes in a medical appointment is like a season in hell, relativistically speaking.
An alternate autistic reality where M.D. might as well stand for Miserable Dread.
Major Discomfort.
Mundane Despair.
Merciless Drill.
Mocking Disdain.
Most (whispered…) Judgmental Damnation.
This isn’t a thread. Not even a threadlet. But the back of my head is working overtime on a post that might pop out of the quantum soup that I proudly call my AuDHD brain… Some day.
I’ve been chewing on this topic for some months. Some of you may remember I wrote about my struggles with hormones a month ago.
The TL;DR, Too-Long-Didn’t-Read Version…
- I had a sudden physical crash in March of this year.
- Disabling illness. Fast… and outta Nowhere.
- The ONLY diagnosis and treatment I have had is testosterone replacement therapy.
- So far.
On the health side, this story has just begun. Because a sudden physical crash like this is unusual, even in a 70-year-old. So, I’ve been seeking an appointment with an endocrinologist to discover underlying causes. Which can include cancerous or other tumors. Or endocrine problems like thyroid or pituitary. Critical testosterone levels lead to damaged nervous, cardiac, and other systems if they persist for months.
My testosterone was 10% to 25% of normal when I was finally diagnosed. Well into the red zone…
But TBH, I have other than medical-diagnosis fish to fry today.
Before my /rant mode goes off, let me reassure you that I am getting better. A shot in my hip twice a month and I’m clearer, more awake, have more energy, have some ability to make decisions… and the only thing that matters to me: To write.
But the ride is still jarring. Even by veteran autistic burnout standards.
As they dial in the right dosage, I’m alternately getting too little… or too MUCH testosterone to function. To do things like, ya know, change my underwear and brush my teeth. Push a lawn mower. Write an hour… most days.
Or alternately, publish like a madman for two weeks. Then go silent for 4…
Which is why I still need to write a more coherent article/podcast/video with more helpful information for you. I hope to have the spoons soon.
But I NEED to rant this morning.
And as I’ve discovered when I rant and reveal? I do more for folks who follow me than when I spend hours and days polishing my prose…
So, for today, here’s something I could call…
“This Autistic’s Fantasy: So, He Asks about My History… What I told My Doctor.”
I always try to give you an accurate rendition of actual events. With enough sensory impact to make it real. I’m gonna veer a little into fantasy here. Cuz, well, I’m not really this good…
My wife and I tend to have our medical appointments together. She’s just finished her history and physical exam with Dr. T. They call him that in university-town Bloomington, Indiana. Medical staff around here are challenged, ya know, speaking foreign names, say from Europe.
I’ve come to feel safer in the last year or two in a medical appointment. My wife comes with me now. It helps. Honestly, she helps me communicate.
With the emotional pressure of every medical appointment for me? When my diaphragm’s tight, jaw’s cramping, hands are rubbing over and over and over, stimming with all their might… for me to just hold on?
I tell the doctor-of-the-moment either too much, too little… or the wrong fucking thing. Every time. Unless I have my wife’s support.
So here’s my ass planted on the white paper of a medical examination table. Feet dangling. Hanging in the air that sharp, acrid, antiseptic odor… that I can’t tune out…
Ever notice that every aspect of any medical scene looks and reeks only of… death?
Pretty much my least favorite places in the world… since they stopped giving me lollipops for good behavior.
“So, now, your turn. Are you working?” Dr. T asks me.
“I’m 70.” I smile my friendly, I’m-just-a-guy-talking-to-a-professional-and-have-nothing-to-hide grimace. Cuz, well, I don’t. I need this guy to take care of me. Why lie?
Old Doc T crinkles his eyes behind the black frames. A shock of white hair. Thin, athletic build. His smile? Think Dr. Welby back on 70s TV. Before he started making ads for Sanka…
You know. Doc T glows health. And… condescending warmth & gentle wisdom.
“Well, I’m 74. And I’m still working.” He vaguely waves his stethoscope in my direction.
Fluorescent lights hum for a moment.
“Well, I don’t.” Pause. I look to the side, out of his steady gaze.
“I’m retired. And I’m not doing much of anything for work.”
Ok. I’m pissed. But I don’t know that until I get back in the car and review the checkup with my wife. It’s a thing we do. It really helps me avoid unnecessary worry and anxiety.
It is not this man’s fault… necessarily. Which I only discover as think it through with her. I remember that I tend to deeply analyze slight microgestures… microaggressions. And that I make lots of mistakes.
But there are things I cannot undo from inside my own skin. Like 6 decades of being misunderstood, misjudged, and frankly mistreated by professional caretakers. Pros who place their confidence in the normative models that they were indoctrinated in.
Which …
I.
Do.
NOT.
Fit.
Because autistic, ADHD, and post-traumatic as I am… There’s NO place on the Bell Curve of “Normal” that they expect…
For me. AutisticAF dot me.
Let’s say Dr. T’s eyes widen a tad at my response. But, I think to myself, he might be a good Doc. Cuz whatever his personal feelings are, he continues without rancor.
Back to Gentle, Wise Gaze. “May I ask what you did before?”
I’ve seen this movie. Too many times.
“Wow.” I have no idea how to summarize my life. A flood of images, memories, conquests, disappointments in my mind’s eye… “That’s complicated. I’ve been a publishing executive. And I’ve been homeless.”
“That is quite a range. How do you explain?”
Hey, I’m pretty much thinking that he already thinks I’m full of shit. I have on worn-out jeans and a GoodWill cotton shirt. What does autistic me do? I can’t help myself. I bring up random supporting details.
“Look, it’s more complicated than that. I’ve worked at McDonald’s, cleaned houses, been a marketing vice president, and homeless. Several different times in my life.”
There’s a pause. Doc T thinks a moment.
“Are you from around here? How did you come to Indiana? Where were you living before?”
My anxiety’s rising. I hear myself talking faster and faster.
“Upstate New York. The Adirondacks. I was living with my mother and family.”
“Oh. How did that come about?”
I think, You know, wtf, what does this have to do with checking my testosterone level. He’s already told me that’s all he can do until I see a specialist...
But I answer.
“My career crashed. One of several in my life.”
I’m having trouble giving you an idea of how few words I am using. Mostly just nouns and verbs. It is so hard to come up with words…
Look, I’m a trained and experienced mental health social worker. Worked in clinics and private practice for about 10 years. I know from Functional Scales. And why the questions are nearly all based on occupation… in our Capitalist Society.
And I myself have had to gently nose around in a client’s life to get a sense of their well-being. Or substance use. Believing I can help.
So what. All my knowledge and experience? In that moment, I’m a cornered human animal.
I’m feeling judged. And I KNOW one thing from past doctors, nurses, therapists…
ANY explanation I give of my autistic life is pointless.
I have never pierced the professional all-knowing shell of a helping pro… and felt seen. Felt justifiably human in their presence.
All registers with me? It doesn’t matter what the truth is in the hearts. They may be selfless, brilliant miracle workers. That is not what I feel.
I feel small.
I feel crushed.
I feel unable to be heard.
And having been a helping professional? I must add this. I suspect there’s a lot of self-justification and outright lying to oneself required to work in these fields. About their “special” knowledge. The good they do for clients. And the myth that You Will Be the One to Make a Difference.
There was in me. Back when I cosplayed being a pro…
None of that insight matters. It all vanishes in the moment of a medical exam.
All I register from doctors and helping professionals? A wall of arrogant narcissism on their outside. And inside me? A wall of rage, frustration, guilt, and self-disappointment that I will struggle to recover from. Sometimes for days.
Now, there IS more I need to tell you. Probably there’s more you’d like to know. I do think this shortish rant will grow into a more complete work with more hard information. Soon if I can…
But right now, I had to tell someone what it feels like for me to face a doctor. Cuz I know in my freaking sinews, some of you understand. And I need heard.
BUT…
If you love, care for, teach, or employ an autistic person?
I personally have some things I hope you can take away from my rant.
• You cannot understand…
or G-d forbid judge…
an autistic person in the moment, or even a month or two.
Our internal experience is different than yours.
Our “common sense” is different than yours.
How we learn? How we live?
Different from you.
• To know us, to work with us, you need the humility and genuine awe of Star Trek’s First Contact with Vulcans.
We come in Peace.
We come bearing Great Gifts.
We come in Autistic Joy.
If… you give us the space to breathe.
Okay, as we used to say on the Usenet… back before WWW.Fucking.Anything… end rant.
/Rant mode off. For today.
Btw, the fantasy aspect of this conversation? It’s not the content. This is my truth as directly as I can speak it.
The fantasy lies in all the thoughts between the rapid-fire exchanges.
In other words, all the things that I WISH I could have told him. Given the time I need.
Further Reading Suggestions
Low Testosterone Levels in Older Adults
- “Low testosterone levels can lead to a variety of health issues, including decreased muscle mass, low energy, and even mood swings.”
- “Many older adults are unaware that low testosterone can also impact cognitive functions, leading to memory issues and decreased mental sharpness.”
- Normal levels for testosterone by age, gender, more.
Testosterone in Autistic Adults
- “Decreased dehydroepiandrosterone sulphate levels in plasma of autistic adult males”
- “[S]ome research suggests that men with autism may actually have lower levels of testosterone than neurotypical men.”
Related Reading from AutisticAF
- #AutisticRave: Rediscovering Autistic Joy as an #AutisticAdult.
- How to Get Diagnosed #ActuallyAutistic… in Just 26 Years! – Podcast
- Confessions of an #AdultAutistic Anxiety Junkie – Stimming, Overload
- Autistic Burnout: What Works for You…?
- 50 Shades of Autistic Thinking, Pt 2: Verbal Processing
One Autistic Voice: Escapin Up The Country – #AutisticAF Out Loud
- One Autistic Voice: Escapin Up The Country
- Actually Autistic? Whatever Doesn't Kill Your Unique Neurodivergent Ass… s4e3
- Autism? It's a State of Being. NOT an Identity Group, s4e2
- Slouching Toward Joy: My Best 6 Phases To An Actually Autistic Relief, s4e1
- The Night this Autistic Adult Broke Free: An Autistic A.F. Halloween Tale, s3e8
#AutisticAF 
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