How To Get Diagnosed #ActuallyAutistic in Just 26 Years6 min read

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.

22 Comments

  1. I love how you describe “Autistic Joy!”  I have described it also as a state of “bliss.”  A lot of your experience is highly relatable to my own.

    1. Author

      Excited to check out your blog.  Thank you!

    2. Somehow, my comment got swallowed…

      In your honor, I now refer to #blissout as my meltdown from joy…

      Which you sparked in me.

  2. This gentleman JohnnyP explains Autism better than any other which I’ve read thus far on this Aspergian discussion site.  Kudos.  Glad that you finally found your proper diagnosis and are now much better after understanding what is actually NORMAL for YOU.

  3. Yes, I can too resonate so much with your well described simply autistic joy :)Thank you!

  4. So relatable!  Thank you for articulating what I think about almost always

    1. Curious…

      Cuz I have no close autistic friends IRL…

      What did you relate to most?

  5. So much of what you write reflects my own experiences.  Thank you so much for your candidness.  Autistic joy: way to go!

    1. Would you share experienced you relate to?

      I haven’t developed face to face with fellow autists yet…

      So I love to share stories…

  6. This is all sooooooo understandable.  Yeah.  Me too.

    Welcome to our tribe …

  7. Ummm I worry about bandying about the term “Neurotypical” ( especially as a insult).  There is an almost infinity variation of people’s characters, behaviours perceptions, etc,
    I would prefer to se the term ‘normal’ .
    As I explained to my Nephew when he asked me what Autism/Asperger’s was/ He needed to be able to tell a Doctor who had never heard of it, so he could get a repeat prescription of the medication he relied on.
    I said that it was a grab-bag of behavioural characteristics — which everybody had.
    When one has many of these quirks, we describe it a either Autism of Asperger’s.
    I say “BEHAVIOURL” advisedly because although I am totally aware that it is basically in the brain or metabolism I feel absolutely sure that there is a plethora of different causes and that neither Autism or Asperger’s is a real diagnosis.  Just a description.
    And what any individual NEEDS probably is very individualistic.
    And THERE!  MY responding to this in these terms is the sort of thing that causes my sisters to assure me that I have Asperger’s.  Also the fact that I don’t think Temple Grandin is wonderful — she’s a perfectly ‘normal’ odd-bod,!

    1. Tbh, our thoughts are different enough I don’t have a ready response.

      But I thank you for sharing them.

      And I’ll think about them.

      -Johnny

  8. I always thought that we ‘Asperger’s’ come in families.  🙁 Both of my parents would have been diagnosed as Asperger’s if that was a diagnosis then,
    My Dad was Diagnosed as ‘Schizoid personality’.  He used to write long long long letters to people about things he had concerns about.  This could get him into serious trouble, especially during the 1940s and ‘The War’.
    My mother was a ‘difficult woman’.  I have memories of staying with my Grandparents and hearing Grandfather saying to Grandma, “Ruth always WAS a difficult child”.  She prided herself on ‘telling the truth and shaming the devil”.  Unfortunately she told everyone what was wrong, and never complimented 🙁
    I have two seriously Asperger’s nephews — one is unemployable – though brilliant with computers, the other is a brilliant Physicist.  I would venture to suggest that ALL physicists are Asperger’s 🙂 I also have a couple of odd-bod nieces 🙂
    I was lucky enough to go to Selective Schools form 5th Class onward and odd-bods (lateral thinkers?) tended to abound.  So I didn’t feel so much as an odd-one out.
    I’m sorry but I have little contact with ‘Autistics’ (who I see as quite different to we Asperger’s people).  I think that there is a far greater variation in Autistics than Asperger’s.

    1. Author

      I’m reasonably certain my father was autistic.  My mother?  Seems unlikely…  But one of her brother’s may or may not have been schizotypal.  Certainly, I’ve wondered about that uncle for sometime.

      I broke all contact with my family of origin nearly 10 years ago.

      Honestly, my experience with autistic folks has been largely with average or above-average intelligence.

      As a social worker, I worked with one woman in her 30s who I was told had an IQ in the 80s…

      I found her to be unusually verbal. 

      Didn’t know of a psych diagnosis for her…  But in hindsight, I wonder.  At any rate, I enjoyed her company, her interests (among them knitting…  As stimmy as it gets), and her conversation.

      1. I’ve taught junior secondary kids with IQs as low as 70.  They are perfectly ‘normal kids’.  They can be lovely, they can be awful and everywhere in between, I’ve never known any of them to have troubles with speaking and understanding language.
        They just don’t do well in schools without ‘streaming’.  It was heartbreaking having to ‘teach’ these kids stuff that had no hope in Hell of understanding

        1. Author

          Well, I may not have communicated well, I may not actually be a good judge of verbal skills, or unfortunately I may have prejudices I’m not aware of yet. 

          I worked for ARC at the time, and my client’s verbal skills more closely matched those of my college-graduate wife than those of my other clients.  It was noted by my fellow workers as well.

          I’ve always believed she expressed an uneven intelligence, much as I do.

          In addition to the more usual difficulties understanding social cues, verbal processing, status, interoception, detail vs generalization, etc, I have lower than average ability to process three dimensions, some odd pinholes in abstract thinking (I was supposed to be a math wiz but 2nd semester calculus and ALL of statistics stopped me cold), and a few other things that don’t show up on IQ, GRE, LSAT and similar tests.

          But I ramble…

          1. Snap!  I was ‘brilliant’ at Maths.  — or rather excellent at Euclidean Geometry and OK at Algebra, and they put me in the top maths class at my selective school for the senior years.  I Bombed.  Fail mark which I cannot remember in Maths I (Algebra and Calculus.  so the algebra saved me from utter ignominy) and 2% in Maths II Coordinate Geometry and Trigonometry. 
            Basically I was in too high a class and the Teacher couldn’t teach !  SHE was a brilliant Mathematician and simply expected s to be able to “understand” — because she couldn’t explain it as it was all so so obvious for her.

  9. When you said “I’m in the flow” I felt it.  Not sure if I’m autistic but I relate to so much of what is said/written here.  Need for time alone.  I walk fast and get into the zone, as I call it.  I hate being interrupted and sometimes I can’t socialize at all.  Even with my kids.  Just can’t rise to it.  I love them dearly too.  As I get older it seems harder to “mask”, if that’s what I’m doing when I go out.  Not sure but I seem to want to be understood and released from expectations of normalcy.

    1. Author

      Welcome, neurofriend.


Talk to us... what are you thinking?