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How to Get Diagnosed #ActuallyAutistic in Just 26 Years

Every therapy, every diagnosis, every medication– burnout, meltdowns, marriages, careers, shutdowns, and then there was clarity with a late diagnosis of autism.

First off, this is not a poor-me story. This is a journey to #AutisticJoy story…

I’m a singer/songwriter, pretend Rock Star with a 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, my guitar playing, or even my mohawk…

1. Could I be autistic?
2. Should I get a diagnosis?

Well, here’s my way-long, way-detailed, way genuinely autistic answer…

I was born in 1953. Long before autism or Asperger’s were widely discussed in medicine or popular culture. More or less, just beginning in the 70s.

At least by 1957, at 4, I knew I was “different.” Family and neighbor kids told me so.

A lot.

In kindergarten, a teacher reported I was unusually creative, but “stayed to myself.” After 2nd grade intelligence testing, I was tagged “gifted.”

But my behavior was “odd.” Solitary. Formal in speech, a know-it-all. “Insensitive to context,” liked talking and playing in class. “Inattentive” to lessons.

I had one close friend at a time… In fact, only one I remember in all of primary school. In 4th & 5th grade. Jeff.

Wonder what he’s been up to the last 56 years…

My intelligence: uneven. My reading skills were off the chart, but verbal learning, most of education at the time, was difficult for me. Math tested high, but I was so impulsive on quizzes, I needed remedial classes.

Tests were a silly game to me. It was fun to be the first-one-done. I couldn’t have cared less about grades. I’m a process-, not results-oriented guy.

And most glaring? I was disliked, even hated, by schoolmates, cousins, perhaps even parents.

I was a target for mockery, hate speech, bullying, physical and sexual attack, and later molestation. And universal disappointment: “You’re not living up to your potential.”

A history of dozens of jobs, dozens of relocations, lost years in a cult, lost years in badly matched relationships…

And honestly? A history of causing great pain to others. Inadvertently perhaps, but not always. Then circling back to the couple of decades in what most would label a “cult…”

Something was just not right with this picture.

I first sought diagnosis at 17 following suicide attempt #1 in 1970. The experience was horrific.

I felt badgered by the therapist, “I know you have a secret you want to tell me.” I wanted so badly to please her. But had no idea what I was feeling, much less why.

As still happens under great stress, I temporarily lost language ability. I became mute. Which has several times been interpreted as “resistance,” “guardedness,” or even “passive aggression” by “helping” professionals.

I didn’t try therapy again until my first year in grad school, 1980. The psychiatrist summarily dismissed me without a plan when I didn’t respond to imipramine (an anti-depressant)– possibly I pissed him off. I seem to have a talent for stepping on therapist toes.

But in 1991, I entered the mental health system and essentially never left. Every new psychiatrist, psychologist, therapeutic social worker confidently diagnosed me… with something entirely different.

Between 1991 and 2016, I was diagnosed with adjustment disorder, major depression, type II Bipolarity, rapid cycling bipolarity, malingering, borderline personality disorder, dissociative disorder NOS (including discussion of multiplicity), PTSD….

There have been additional discussions of various anxiety disorders (especially social anxiety), attention deficit, schizophrenia, TIAs, stroke damage…

Pretty sure I’m leaving a few out.

With each new diagnosis, each and every professional confidently told me he or she had nailed it.

This time…

And they could help.

I was medicated accordingly with imipramine, Prozac and all the modern SSRIs, Welbutrin, Effexor, Lithium, depakote, tegretol, gabapentin, klonapin, lorazepam, respirdal, the occasional syringe of haldol, provigil and other narcolepsy drugs, sleep aids, supplements like fish oil, more I’ve forgotten….

And offered suggestions of Abilify, Seroquel, other anti-psychotics, electro-shock (ECT)…

As well as therapies including Jungian, supportive, interpersonal, analytical, psychodynamic, cognitive, task-centered, solution focused, dialectical behavior, cognitive behavioral…

I was myself a counselor from 2001 to 2011. Strange, but true.

Not one of these interventions helped me materially.

Not one.

And I experienced some very concerning side effects: tics, emotional numbness, difficulty thinking, feeling like a stranger in a strange mind. I totally gave up on treatment and medication in 2011. Bouts of suicidality ensued.

A very few friends and one wife threw the term autistic around over the years, but I never followed up. It seemed so unlikely. I was so bright. So articulate. Even somewhat successful… for a few months at a time.

And without conscious awareness, I had become adept at hiding the fact I was actually dysfunctional… perhaps the majority of the time.

Plus, I could pass for “normal” by masking… when not under stress. I learned by junior high to practice my favorite classmates’ neurotypical behavior in the bathroom mirror. Hide stimming, meltdowns, panic attacks, the total autistic burnouts lasting sometimes months, years…

In 2011, the intimacy of the most successful relationship of my life forced me to look inwardly as deeply as I could in order to avoid losing my third wife. (We are still together, deeply in love, but live in separate houses a few hundred feet apart. She needs breaks from my intensity. I find even her company exhausting after a few hours.)

My now-third wife had a family member with “high-functioning” autism, what we used to call Asperger’s (and what we now call, simply, autism). Watching this young boy negotiate his world was like watching myself in a magnifying mirror.

We had so many behaviors in common. Mine were just somewhat better disguised. With my wife’s encouragement in 2012, I began reading articles, books, online forums…

In 2016, when we separated briefly, I finally re-entered therapy. This time, I contacted various experts in adult autism through Indiana University’s Indiana Institute For Disabilities Community (IIDC).

Bingo.

Every symptom…Explained.

Every “flaw” in my character… traced back to this pervasive developmental diagnosis.

I am making progress in a kind of task-oriented counseling. Working on strategies to accommodate characteristics that just ain’t gonna change…

But the key gifts that external, credible diagnosis gave me:

  1. Accepting I really am different, with very different needs from neurotypical folks.
  2. Providing for those needs, as I discovered them. For instance, understanding my “special interests” are not hobbies. They are central to my survival. My job.
  3. Reducing stimulation, sensory & social. Accepting I will have few intimate relationships in my life and becoming cautious about “friendships,” only those few folks who take the long, long journey to know and like me. After a lifetime naively assuming each new stranger was a new friend, my motto became, “Don’t like me? Don’t hang.”
  4. Spending unashamed time… alone. I have a radical need for autonomy, while simultaneous difficulty managing independence when any other human is present. 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, maybe 2 hours with my wife. Which brings me to…
  5. Finding love. My neurotypical wife and I respect, admire, encourage, and desire one another. Pretty much a first for me.

Over the last few years, I’ve not only experienced reduction in anxiety, depression, suicidality, dissociation, night terrors, meltdowns, panic… I’ve come to realize my natural state.

Autistic joy.

Not disease…

Joy.

When I’m creating words or music, walking alone in Nature, watering my garden, cooking, fermenting pickles, making bread, decorating, yard sale-ing, reading, loving my pets, meditating, even shaving…

I’m in the flow.

There is no time. There is no space. No surroundings. No memory. No pain. Just lizard-warming-in-the-sun…

Joy.

Everything that restricts that joy? Gotta go. Good riddance…

So, diagnosis?

Yeah.

That’s my story.

And this time, I’m sticking to it.


Support #ActuallyAutistic artists, musicians, writers…

Like, Share, or Comment, so search engines share more autistic voices!


Originally published in The Aspergian.

By johnnyprofane1

Live. Laff. Love. Rebel...

Pretend Rock Star... Cuz it's ALL cosplay.

I have no credentials to offer. At least none that matter anymore to me.

So I offer my life.

It's all I have to give.

Blog
https://AutisticAF.me

Music
https://open.spotify.com/artist/20QxTBY9Yk0d7BYCt3aVeS

#ActuallyAutistic #AllAutistics #AutisticElder #AutisticSurvivor #AutisticJoy #Neurodiverse #Neurodivergent

6 replies on “How to Get Diagnosed #ActuallyAutistic in Just 26 Years”

Check: every.single.line, all ‘me, too!’ And, so glad to also get to ‘D-Day’: diagnosis day, 13 months ago: joy & relief, a new birthday, a very very late diagnosis at 70, better late than never, though zId searched my whole life for answers as to why I too am different, so your story’s milestones are very similar to mine, and so can agree from my own experience that it’s a joy to now be recognised as autistic (ASD level 1, formerly Aspergers Syndrome etc). Congratulations & welcome to this yes happy home, shared with a couple of young friends. Strange thing is, my doctor father told me so a year or so before he died, but the label was unacceptably scary back then, unchanged since his medical school days in the 30s, so I thought he was ‘losing it’ himself at the time, in his 80s, so I impatiently rejected his diagnosis out of hand! I do,so wish he had explained it in a way I could have understood, thought he was quite direct himself. It was only years later when, in hearing that the child of someone I knew was diagnosed, that I searched for a book to understand, and, bingo: it was like looking in a mirror, reading a 2-page list of symptoms; it took me 33 months to get to diagnosis day, but it was so worth it, getting confirmation of my own hunch & a proper clinical testing process by sympathetic psychologist who wrote a clear report that become my guideline. I’d recommend this to everyone, though hoping it would be quicker for younger people now. It’s been a joy, though not unalloyed, as it made tough reading, pulling no punches, & took longer to get used to as well. But getting joined up with other adults in similar situation & conditions, meant I finally ‘met my tribe’: it was worth it! So congratulations for making it to the finishing tape of the marathon, now enjoy your victory lap, as I am: we deserve all the joy this new awareness can bring, for the rest of our lives. Best wishes, Una

Liked by 1 person

My 45 year old son does not have any close friends, prefers to be by himslf,,although he has been in a relationship for the past 12 years.. He very seldom goes out and about with her,meh works and stays home..He hasn’t had any kind of a relationship with me since he was 30 years old..Until that time we were very close and just like that it’s like I’m dead to him.,hurts my heart so bad..His youngest son is autistic, doesn’t talk,,he hasn’t seen him for 14 years..My son is very intelligent and has a great since of humour..I know that I will die without ever spending time with him again..WHY !

Liked by 1 person

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