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.

Follow me on

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.


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