Friday, September 18, 2015

With Respect to the Spectrum

The Big Give for Autism

How ironic is it that this week seems to be the annual fundraiser for Autism and I received an official diagnosis of Autism Spectrum Disorder on Wednesday.

I'm 57 and 10/12ths.

Essentially I self-diagnosed a couple months ago while reading aloud to my Mom The Best Kind of Different: Our Family's Journey With Asperger's Syndrome by Shonda Schilling wife of Boston Red Socks Pitcher Curt Schilling about their experience with their son Grant.  As I was reading I kept finding myself identifying with the behaviors she was describing.  After the first few evening's readings I went back in the ebook and highlighted all the incidents for which I had memories of similar incidents.  There were already over half a dozen and as the days progressed I continued to highlight something nearly every day.

So after stewing on it for a week or so after finishing the book I got up the nerve to ask my counselor if we could look into having me assessed for Asperger's.  It turned out she was already considering the possibility.

And now it's official. Well autism spectrum anyway.  She was unclear whether the psychologist who evaluated the questionnaires my sister and I filled out was specifying Asperger's or not.  And I'm not sure if high-fuctioning autism is synonymous with Asperger's.  Since I never had a language deficit and tended to excel in most academic skills that seems to fit the high-funtioning criteria if not specifically Asperger's.  Most of my issues are in the social, sensory, emotional, and perseverating behaviors.  I guess we'll be fine-tuning all that going forward.

Meanwhile I find myself feeling enormously relieved in so many ways by this diagnosis.  It explains so much--like:


  • Why as a child I had few close friends and got along with adults better than my own age group and as an adult I continue to have few close friends and gravitate towards children and teens as my confidants.
  • Why at nearly 20 months I spent the entire night following the July 4rth fireworks until past dawn screaming "BOOM! BOOM! Mama. BOOM! BOOM!"
  • Why my first and only attempt to attend a high-school pep rally ended with me hiding in the girls restroom in the school library with the lights out (until I heard Mr H. lock the front door) in the grip of a full blown feels-like-a-heart-attack panic attack that overcame me just seconds after entering the gym where the band and cheerleaders were warming up and the bleachers were full of nearly 900 students all talking at once.  I'd always avoided crowds and had previously spent the pep rallies in the library but they made attending them mandatory so after that first time I made sure to be in one of the library typing booths with the light out-sometimes hiding under the desk-until I heard Mr. H. locking the front door.  Or I'd be conveniently home sick that day.  (I usually wasn't faking it as severe anxiety created symptoms that mimicked illness like sore skin, low-grade fever, sore throat, nausea.)
  • Why I tend to get intensely focused on one topic or activity to the exclusion of others like watching all five Star Trek series inside of four months or all ten seasons of Criminal Minds inside of five weeks or crocheting for twenty hours straight or spending most of forty some hours writing a short story or listening to the same album twenty times in a row or until my brother threatened to break it if I didn't give it a rest...ad nauseum.
  • Why I research every subject that catches my fancy like I'm going to be writing a master's theses on it.  Wanna lay bets on which subject will be getting that treatment next?
  • Why I dislike being touched
  • Why I like handling things with different textures and shapes and feel a compulsion to touch everything in sight
  • Why I get lost in a zone while staring at something--or nothing.  "Earth to Joy!"  (which may have resulted in the loss of my first close friend in sixth grade after I refused to respond to her calling my name during a rainy-day-recess hide-and-go-seek game in the classroom.  I suspect just like the pep rally I was in sensory overload and had gone into my version of a virtual closet )
  • Why I resist meeting peoples eyes.
  • Why I'm such an extreme perfectionist I prefer to not do it at all than to do it wrong.  In grade school I'd start the assignment over each time I made a mistake because even the erasure smudges offended my sensibilities.
  • Why I have OCD tendencies
  • Why I'm ritualistic about tasks, liking to do them in a certain way or having difficulty doing them at all if some element of that ritual or the ability to establish a ritual is denied me.  But sometimes the ritual for just setting up to do the task consumes the allotted time for working on the task.
  • Why I have difficulty following oral directions without needing them repeated--several times.
  • Why speaking on the phone is nearly as difficult as attending pep rallies
  • Why I'm clumsy
  • Why I jiggle my leg, tap my fingers or pencil on the desk, swivel my desk chair side to side, tap my tongue on the roof my mouth or teeth (one of the ways I learned to disguise the compulsion into socially acceptable behaviors along with rocking babies, bouncing on the mini-tramp or exercise ball, sitting in swings or rocking chairs, drumsticks...)
  • Why I like to collect things and hate to give them up--even things most would toss in the garbage without a qualm--like the old asbestos bathroom floor tiles I hid under my mattress when they put in new linoleum when I was six.  I was heartbroken when Mom discovered them and took them away.  I'm still saving weird stuff but nothing quite as disgusting as that. :)
  • Why I dislike change.  Even transitioning from indoor to outdoor, from dry to wet, from awake to asleep...and visa versa. Switching tasks, changing clothes, changing routines....
  • Why Mom's favorite refrain was 'Why can't you be consistent?'
  • Why it took me nearly ten years to earn my bike via the star chart devised by my mom in which completion of each day's chores without reminding and with good attitude earned a gold star and for each gold star Daddy would put a dollar in the bank for our bike.  My baby sister whom I had a seven year head start on earned her bike several years before I did.
  • Why I dislike any social gathering but especially of more than three or four people.  One on one is my preference.  Well...not counting one on none which I suppose doesn't count as a social gathering anyway.  :)
  • Why I cover my ears and feel tempted to tantrum when sirens or trains go by within a block.  Alarm clocks are barely more tolerable.
  • Why I have such massive startle reactions anyone standing too close can get hurt.  More than once someone coming up behind me or touching me unexpectedly got an elbow in the gut or ribs.
  • Why even listening to conversation takes so much effort and wears me out. And participating is a whole other level of angst.
  • Why I think in images and struggle to translate them into words before whoever is listening loses patience.
  • Why my thoughts go into a free association at lightspeed in which I see patterns and relationships I can seldom convince anyone else are relevant
  • Why conversations with me can wear out the other person trying to follow my train of thought all over the map of ideas.  And that's even if we started out discussing the menu for the next meal.

Nearly all of those examples can be explained by the existence of a neurological condition that makes processing multiple streams of information in real time impossible.  Each of the five senses is at least one separate stream.  Verbal content another--one stream per person speaking.  Non-verbal content yet another--one stream per person present.  Spatial relationships yet another. Time yet another.  Emotions yet another, if not separate streams for each emotion present in the environment--mine and theirs.  This creates the anxiety which leads to the 'unacceptable' behaviors like social isolation, rituals and rhythmic movements, OCD, inconsistency, getting stuck in a groove, the appearance of self-involvement or selfishness.  All of which are manifestations of information overload and/or attempts to soothe the anxiety or control what seems a chaotic environment.

Some of the relief this diagnosis is generating in me relates to the pervasive sense of failure as a human being I've carried for decades because of what seemed to be character flaws preventing me from conforming to expectations--mine or other's.  This sense of failure feeds the depression I've struggled with since at least age 7 and possibly age 4.

Forty odd years after earning my bike I'm still expecting gold star days of myself and never achieving them.  But the chart I've created for myself contains dozens more requirements than Mom's did for me back then.  It's probably impossible for a neuro-typical.  But for someone with the issues I just described above its just cruel.

Now I'm getting a glimpse of a future in which I've forgiven myself for the failure to accomplish the impossible.  For isn't it as unrealistic to expect someone with sensory processing issues to be at ease in a crowd or capable of accomplishing each days tasks to perfection without reminding and with good attitude as it would be to expect a blind person to drive a car or a person with only two limbs to jump rope? 

0 tell me a story:

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