No one knew me

alone-cliff-free-freedom-Favim.com-2096118The 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’m embarrassed to say that I actually had an idea for a blog post that would have been titled “Politically incorrect thoughts on autism”, in which I would have proceeded to accuse most of these children of being spoiled and willfully throwing temper tantrums in order to get attention, and then to go on to claim that many of the parents of these children got their kid a diagnosis simply to shirk the responsibility of effective parenting or to drug the child into submission out of the parents’ own convenience.

I’m not proud of that now-ex-viewpoint.  There may indeed be families for whom this does indeed apply, but I thought this phenomenon was much bigger than it is.

I have always understood that there were children with genuine physical or mental issues that possibly caused them suffering that I could not possibly understand or relate to, and I did indeed give those kids–and their parents–a complete pass.  They were not part of the group I would have berated.  But I assumed that they made up a tiny minority.

I did think that official 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 I wasn’t sold on any one factor).

The target of my blog post idea was primarily planned for the subset of parents out there who could not be bothered to actually parent their children, who gave into their child’s every whim 99% of the time, who thought their child was more “special” than any other child out there, who could not seem to control said child.  And I thought that most ASC-affected families masqueraded under their untouchable diagnosis.

The post would have gone on to say that I resented the idea of “mainstreaming” autistic children into “regular” classrooms, among “normal” kids, mainly because I perceived them as disrupting the latter’s learning and the teacher’s time, posing an inconvenience and annoyance to everyone involved.  I resented the idea of some parents failing to apply proper, consistently-firm-yet-gentle discipline by instead obtaining a convenient diagnosis that gave them a free pass, the only requirement being that they reflexively spouted off the magic phrase “he’s autistic” as a catch-all defense that no one dared publicly question.

I still do have a few leftover reservations about a hopefully-small subset of parents.  I’ll get to that later.  Or maybe in another post.  We’ll see where things go.

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 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? (Clue #5)

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 suddenly flashed back to a visit with family, and my mind snapped to 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.

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 #6)

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, 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.

But these are just online quizzes, right?  Surely they’re not diagnostic.  So I ran a Googler for “autism diagnostic criteria“.

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.

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 was not a cold bitch.

I was not an ill-tempered hothead.

I was not a control freak.

I was not an antisocial recluse.

I’m not defective.

I’m not immature.

I’m not lazy.

I’m not slow.

I’m not obsessed.

I’m not depressed.

I’m not broken.

I’m not a wuss.

I’m not crazy.

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 overloaded, fatigued, inflamed, or conflicting neurological mechanisms (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.

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.  I’ll seek an official evaluation as I find a need for one.  In the meantime, I’ll probably write a series of posts dedicated to this part of 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 change my life relentlessly.

I also don’t have any current plans turn this into a singly-dedicated “Aspie” blog; I still like to express a variety of thoughts and information.  (I may start another blog that does center on “Aspienism” from a female perspective, and if/when I do, I’ll link to it from here.)  But this discovery was huge for me–huge in a way that normal human language fails to describe, and there’s a freight-train of “a-ha!”s, “so that’s why”s, information, misinformation, and support resources that I’m brimming with and eager to share.

So for now, let’s just say…there’ll be (at least some) more to come.

And to the parents of genuinely-ASC children who might have gotten caught in the crossfire of the opening lines of this post: I’m sorry.  Very sorry.

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7 thoughts on “No one knew me

    1. I hadn’t started the Aspien blog yet (at the time that I had written that post) :). But I should go back to edit the post to include a link to the Aspien blog 🙂

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