No one knew me

A commenter graciously mentioned that he looked forward to hearing more about my discovery of autism spectrum membership, so with thanks and gratitude to him and hopes that this may provide encouragement or a little lifeline for others out there, here it is. ūüôā


The title of this post comes from a phrase buried deep in the lyrics of “Mad World” as covered by Gary Jules, which perfectly illustrate that isolated, alien feeling I have known for most of my life.¬† I’ve always known I was different; I just never knew why.¬† I had never even imagined that I could possibly be autistic/an Aspie.

I knew what “everyone else” “knew” about autism…

…which is embarrassingly little.¬† Hell, I probably knew even less than the average person about autism.¬† I had been under the impression that autism was merely a form of mental retardation, having been caused by heaven-knows-what (vaccines, toxins, food reactivity, etc, were all on the table, but the jury is still out and I wasn’t sold on any one factor).

Almost a month ago, life took an unprecedented and completely unpredictable turn.

It began innocently enough, combing through the archives of medical research journals, an activity that has occupied practically *all* of my downtime during the past two years and four months (Clues #1 and 2).  The medical journal I had stumbled upon, NeuroImage, has an extensive archive of fascinating titles, and I devoured all of them, collecting the open-access (i.e. free full-text) articles and saving them to my hard drive (Clue #3).  This activity is simultaneously robotic and euphoric (Clue #4).

In fine-tooth-combing through the various articles in the archive, I noticed titles such as, “Functional connectivity in an fMRI working memory task in high-functioning autism“, “Social stimuli interfere with cognitive control in autism“, “Neural mechanisms of advance preparation in task switching“, “Atypical neural networks for social orienting in autism spectrum disorders“, “Altered cerebellar feedback projections in Asperger syndrome“, and “The anatomy of extended limbic pathways in Asperger syndrome…”.

Something began to stir…

Task-switching…was that the academic name for the frustrating “switching of the gears” that normally takes people less than a minute but took a full 20 minutes (I timed it) for me? (Clues #5 and 6)

Cerebellar feedback issues…extended limbic pathways…social stimuli… These were all concepts that, although I may not grasp their full meaning, something visceral certainly awakened.

I seemed to have difficulties in these areas, too.

I began to think back to a visit with family, talking with a cousin at the dinner table, a friendly-but-aloof lovable chatterbox who told story after story about events that occurred 20 years ago, always beginning each anecdote with the peculiar, “in the summer of 1991 in [city A], [another cousin], [an aunt], and I were all in the car and we went to [city B] to the zoo.¬† Yeah, I was 14 that year.”¬† And then she’d go on a conversational marathon, being sure to cover every detail, and often repeating herself a few times.¬† My partner and I had theorized that she might have Asperger Syndrome or some other form of autism.

In a way, I “got” her.¬† While her mannerisms might have bothered others, I could tolerate them just fine.¬† And I even understood her, in ways I couldn’t explain.¬† She must have felt it, too, because she calls me and we talk for hours, even though we’ve only known each other for a matter of months and led vastly different lives, separated by a thousand miles.

It often slowly dawned on me, far too late into a conversation, that I would babble endlessly about something that interested me.¬† I, too, was often complimented on my long and detailed memory.¬† I, too, began many monologue stories with dates and places–specifics I have begun to recognize that others may perceive as trivial. (Clue #7, and probably #8 and 9 as well)

I seemed to have some of those quirks in some way, shape, or form, too.

Neurological oddities…personality quirks…unexplained emotional responses…persistent preference to be significantly less social…

I began to piece the puzzle together.  And a deep curious yearning caught flame within me.

I had to know.

I went to my closest neighbor, Google, and typed in “Aspergers quiz”.¬† I took the first one, answering every question as honestly and unfiltered as possible.¬† There were 50 questions; the average score for a neurotypical is 16.4, and scores above 34 were considered a strong suspicion or high likelihood of Asperger’s or autism.¬† I scored 43.¬† I took the quiz again a few days later.¬† Score: 44.¬† I took a different type of quiz (from the same source), geared specifically for adults.¬† Same results.

I took a different type of quiz from yet another source, also designed specifically for adults.¬† Here’s the screenshot of my results:

Screen Shot 2016-05-04 at 12.55.53 PM

But these are just online quizzes, right?¬† Surely they’re not diagnostic, are they?¬† So I ran a Googler for “autism diagnostic criteria“, and started scanning the list, nodding my head as I went.¬† (How did they know??)

Failure of back-and-forth communication?  Check.

Lack of eye contact?  Check.

Difficulty sharing imaginative play with others?¬† Check.¬† (What “others”?¬† I preferred to play alone.)

Inflexible routines?  Check.

Hyper-reactivity to sensory stimuli?  You got that right.

And so on.

I met all the criteria, hands down.

My desire to know became all-consuming, my appetite for information a bottomless pit.¬† I searched for “Asperger’s adult female characteristics”, and other variations with similar meaning.¬† I found Tony Attwood and Tania Ann Marshall (who is especially adept at describing young girls and women on the spectrum!) (Again, how did they know?)

I felt like I was staring into the mirror.

I felt liberated.¬† My journey through life hit a Warp Zone.¬† I devoured blog after blog, written by other adult female Aspies just. Like. Me.¬† Who battled the same inner conflicts.¬† Who had harbored the same self-doubt.¬† Who experienced the same confusion.¬† The same sensory overload.¬† The same hyper-reactivity.¬† The same meltdowns we couldn’t control, make sense of, and felt ashamed about afterward.¬† The same creative, caring, emotionally-rich, and empathic traits I had.¬† The same anxiety.¬† The same need for rituals.¬† The same intensity of Special Interests.¬† The same socially-defective feeling.¬† The same “people’d-out” fatigue I get when I’ve been out and about for too long.¬† The same feeling of No One Understands, the same feeling of being dropped off on the Wrong Planet.

Several times during the next couple of weeks, I literally broke down in tears, not from sadness, but from feelings of freedom and relief.  Suddenly it all made sense.  Everything could be explained.  Everything.

I’m not a cold bitch.

I’m not an ill-tempered hothead.

I’m not a control freak.

I’m not an antisocial recluse.

I’m not defective.

I’m not immature.

I’m not lazy.

I’m not slow.

I’m not stupid.

I’m not obsessed.

I’m not narcissistic.

I’m not weak.

I’m not weird.

I’m not depressed.

I’m not angry.

I’m not broken.

I’m not a wuss.

I’m not crazy.

I never was.

And…I’m not alone.

I’m…okay.¬† Yes.¬† Okay.

I know now that my meltdowns are not due to some psychological problem; they result from psychological stress that arises from feeling overloaded or fatigued, being inflamed, or experiencing conflicting neurological mechanisms (again, the jury is out on the specifics).¬† It’s neurologically reflexive.¬† I can’t help them any more than someone could keep their foot from swinging out when the doctor taps them on the knee with the little triangle hammer.

It’s also something that’s not going away.¬† We don’t outgrow our genes or neurological wiring.¬† We might be able to influence gene expression or manipulate neurological pathways or brain function, but those are not fully elucidated yet.

No one knew me.¬† No one had ever known me.¬† It’s not their fault.¬† How could they have?¬† I hadn’t even known myself.

Will I be going for an official diagnosis?¬† I don’t honestly know yet.¬† I’ll seek an official evaluation as I find a need for one.¬† In the meantime, I’ll keep writing about my journey and the new lightning-strike-moment realizations and their unfolding ripple effects that repeatedly hit me with waves of liberation, acceptance, and awakening, from which I gain insight that continues to transform my life relentlessly, a transformation that is a long time coming, and so far, refreshingly welcome.

ūüôā

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