This is not a poor-me story. This is a journey to #AutisticJoy story…
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.
Hi! I’m Johnny Profane.
DSM 5… Diagnosis 299.00. An Autism Spectrum Disorder diagnosis…
Why get one…? Does it label you for life? Does it change… anything…?
If you’re autistic… you’ve already answered these questions for yourself.
But if you love one… parent one… employ some… or wonder if you are one…
Well, these are more than casual questions.
Here’s my story…
Autistic As Fuck Out Loud…. episode 8… “How to Get Diagnosed #ActuallyAutistic… In Just 26 Years.”
Real talk. Adult to adult.
But I suspect you’ll find some reassurance here. And info you may want to share… with someone you know… who cares.
Article continues below…
Videocast (captions, 18:23)
This is not a poor-me story. This is a journey to #AutisticJoy story…
I’m a blogger, podcaster & pretend Rock Star. Decent following… after at least 5 other careers.
I’m also #ActuallyAutistic. Or my fave hashtag… #AutisticAF.
Two most frequent private-message questions I get?
Not about lyrics… or why I rock a mohawk at nearly 70…
The first? “Could I be autistic? “
And the second, “Should I get a diagnosis?”
Well, here’s my way-long, way-detailed, way #ActuallyAutistic answer…
I was born in 1953. Long before autism made the scene in medicine or pop culture. More or less, beginning in the 70s.
By 4 years old, I knew I was “different.” Neighbor kids told me so. Family, too.
In kindergarten, a teacher reported I was unusually creative… But “stayed to myself.” After a 2nd-grade IQ test, they tagged me “gifted.”
But teachers noted my behavior was “odd.” Solitary. My speech, formal. A know-it-all. “Insensitive to context.” Talked & played during class. “Inattentive” to lessons.
I had one close friend at a time… In fact, only one I remember from all my four primary schools. 4th grade.
Wonder what Jeff’s been up to the last 60-odd years…
Anyway, my intelligence was uneven. My reading skills? Off the chart.
But auditory learning, most of school back then, was difficult for me. Math tested high. But I was so impulsive on quizzes, I got remedial help.
Tests were a silly game. It was fun being first-one-done. Couldn’t have cared less about grades. I’m a process-, not a results-oriented guy.
And most glaring of all? Classmates, cousins, probably even parents… disliked, even hated… me.
I was a target for mockery, hate speech, bullying, physical and sexual attacks. Later molestation.
Plus… I earned almost universal disappointment: “You’re not living up to your potential.”
After graduation? Dozens of jobs. Dozens of relocations. Lost years in a cult. Lost years in awkward, mismatched relationships…
And truth? A history of causing great pain to others. Inadvertently maybe… But not always. Then circling back to those coupla decades in what most would label a “cult…”
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I first sought a diagnosis at 17. Following suicide attempt #1. The intake experience was horrific.
I felt badgered by the therapist.
“I know you have a secret you want to tell me.” Rinse, repeat…
I wanted so badly to please her. But had no idea what I was feeling… much less why. A condition common enough to have its own label. Alexithymia.
I didn’t try therapy again until Columbia grad school, 1980. I was in a deep depression… spiraling down cuz I couldn’t function in school. Yet again.
Therapy hadn’t worked the first time. But… I didn’t know where else to turn.
End result? The psychiatrist dismissed me pronto… without a plan… when I didn’t respond to imipramine, an anti-depressant back then.
Dunno. Mebbe I pissed him off. I seem to have a talent for stepping on therapists’ toes.
So, I dropped out. Cuz I couldn’t handle it. Even after the department invited me to enter the doctoral program. Saying, they could “work out” those coupla incompletes…
In 1991, I finally entered the mental health system and… really? Never left.
For 26 years…
Each new psychiatrist, psychologist, therapeutic social worker… Each diagnosed me… beaming with confidence. Each with something entirely different.
Between 1991 and 2017, I “caught…”
- adjustment disorder,
- major depression,
- type II Bipolarity,
- rapid cycling bipolarity,
- borderline personality disorder,
- dissociative disorder Not Otherwise Specified (including discussion of multiple personalities),
Other suggestions & rule-outs?
- Social & performance anxiety,
- TIAs (brief blood blocks in the brain),
- stroke damage…
Pretty sure I left a few out.
With each new diagnosis, each & every professional told me that he or she had nailed it.
And unlike any doc in the past… *they could REALLY help.
Radiating absolute certainty in their methods & drugs. NEW! In “just the last few years.”
Say… Believing you can help someone else… Does that come with some kinda side order of built-in, self-serving arrogance?
All I know is… don’t cross ’em. Beware the backlash if you wound the ego of someone “who is only trying to help”…
Over time, they medicated me with
- all the modern SSRIs like Prozac,
- that one syringe of Haldol,
- narcolepsy drugs like Provigil,
- sleep aids,
- supplements like fish oil,
and more I clean forget…
I was also offered trials of Abilify, Seroquel, other antipsychotics… plus electroshock (ECT)…
Turned all those down.
And I survived therapies, including… but not limited to…
- dialectical behavioral,
- and the rare session of alternative therapies like EMDR & NLP…
Not one of these interventions helped materially.
Yours truly was actually a counselor himself from 2001 to 2011. Strange, but true. And my training… simply gave me new labels… for my bizarre life. No solutions.
BTW, I had creepy medication side effects. Tics. Emotional numbness. Difficulty thinking. Feeling like a stranger in a strange mind…
I dumped all treatment & medication in 2011. Cold turkey.
Bouts of suicidality followed. But then, again… they never left me during treatment, either.
Over the years, a few friends… and one wife… tossed the term autistic around… but I never followed up.
It seemed so unlikely. I was so bright. So articulate. Even somewhat successful… few months at a time.
I wasn’t conscious of it then. And it still throws me. But, I’d gotten good at hiding that I was in reality… dysfunctional… majority of the time.
I could pass for “normal” by masking… when not under stress. Starting in junior high, I practiced classmates’ “normal” behavior in the bathroom mirror.
Cuz early on… I learned to hide behavior that got me harsh judgment. A survival instinct. Things like
- panic attacks,
- total autistic burnouts, sometimes not functioning for months, years…
No one knew.
What changed things for me?
The intimacy of the most successful relationship of my life. The only successful relationship of my life.
In 2011, I faced losing my third wife. This forced me to look inside as deeply as I could.
For decades, I’d blamed failures… on being some kind of misunderstood genius. Or picking the wrong spouse. Being stuck with the wrong teacher, wrong doctor, wrong job…
My third wife’s family had a young boy diagnosed “Asperger’s.” An old term, like “high-functioning” autism. Now we drop functioning labels and just say… autism.
Watching him negotiate his social world? Like watching myself on reality-tv body-cam footage.
We had so many behaviors in common. Mine were mebbe… better disguised.
With my wife’s encouragement, at 63 I began reading articles, books, online forums on autism.
In 2016, when we separated briefly, I finally re-entered therapy. This time, I contacted adult-autism experts. I found them through Indiana University’s IIDC, Indiana Institute For Disabilities Community.
Every “character flaw”… traced back to this pervasive developmental diagnosis.
I made progress in a kind of task-oriented counseling. Working on strategies to accommodate characteristics that ain’t gonna change…
I left counseling after a year. Dealing with Medicaid transportation was too much… for this autistic. Half the time drivers never showed. Plus Medicaid screwed up billing for my psychologist. He couldn’t count on payment.
Torture for this autist. I couldn’t handle the anger. And I couldn’t handle the guilt.
But I got many gifts from external, credible diagnosis. Gifts I guess I gave myself. Out of gaining some level of certainty.
- I was able to accept that, yeah I am different. With different needs from most folks. I’m no longer failing… at least not at being somebody else.
- Learning to provide for those needs, as I discovered them. For instance, understanding my “special interests” are not hobbies. They are central to my survival. My job.
- Reducing stimulation. Sensory & social. Moving to the country. Going to few public… or family… events.
- Accepting I will have few intimate relationships in my life. And learning caution about new “friendships.” Only those few folks who take the long, twisty path to knowing me. After a lifetime greeting each new stranger like a new friend, my motto became, Don’t like me? Don’t hang.
- Spending unashamed time… alone. I have a radical need for autonomy. While simultaneous difficulty managing independence when any other human is around me. As much as I crave intimacy, I must manage my time with humans. Say less than 5 minutes with a stranger… before anxiety or panic sets in. Mebbe 2 hours with my wife. Which brings me to…
- Finding love. My non-autistic wife and I respect, admire, encourage, and desire one another. And after solid work, we communicate clearly… and with compassion. Most of the time… Pretty much a first for me.
BTW, we’re still together. Deep in love. But we live in separate homes a few hundred feet apart.
She needs breaks from my intensity. Imagine that…
I find even her company exhausting after a few hours.
So, should you… or a loved one… seek a diagnosis?
There are no guaranteed treatments… for autism. There is no guarantee of government aid. There are accommodations in education and employment… for the formally diagnosed. But they are unproven… in their infancy.
So, knowing this… why did I seek a diagnosis?
It seemed like my only option. I needed some fig leaf of certainty. I could not shake a nagging fear. That I was making this all up. Years of the if-I-had-only-tried-harder scenario… were driving me crazy.
I needed outside confirmation. For me.
What did I get out of diagnosis? And short-term counseling?
Over the last few years, I’ve experienced reductions in
- night terrors,
- and panic.
Most important, I’ve come to realize my natural state.
When I’m focused
- creating words or music,
- walking alone in Nature,
- watering my garden,
- fermenting pickles,
- making bread,
- yard sale-ing,
- loving on my pets,
- even shaving… in detail…
I’m in the flow.
There is no time. There is no space. No surroundings. No memory.
Everything and everybody that restricts that joy? Gotta go.
That’s my story.
And this time…
I’m sticking to it.
Shoutouts & Outro:
An earlier version of this podcast appeared in the on-line publication Neuroclastic.
This week’s personal detail? I ripped right outta the personal history behind this episode …
I was founder & publisher of my own magazine at 30. Ran an ad agency for years. Went to grad school in my late 40s. Headed an informal, volunteer nonprofit nearly a decade…
But on average, only functioned about 3 months at a time. Before going down in flames…
Wanna know more? Check out my posts, paintings, poems, music, and politics at www.autisticaf.me…
And… If you enjoyed this episode… please share it on social media? Better yet, send it directly to a friend.
Authentic Autistic Life: 4 Short Stories Fearless, Joyful and Chaotic, s3e2 – #AutisticAF Out Loud
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