With Respect to the Spectrum (Revisited)

Earlier this month I reworked and updated the post I wrote here the week I received my Autism Spectrum diagnosis nearly 5 years ago for publication at Wellness Works NW.  With their permission I'm cross-posting it here.

At the bottom of this essay is appended a list of some of the books on autism I've encountered since my diagnosis. That list is short compared to the TBR list I've collected on the topic so tomorrow I'm participating in Dewey's 24 Hour Read-a-Thon and intend to devote at least 50% of my reading time to the topic in both fiction and non-fiction.

I was diagnosed with High Functioning Autism in the Fall of 2015 the very week of the annual fundraiser for Autism.  How ironic is that?

I was 57 and 10/12ths.

Essentially I had self-diagnosed a few months previous 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 that resonated with my own memories of similar incidents.  There were already over half a dozen and as the days progressed I continued to highlight something nearly every day.

After stewing on it for a week or so upon 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.

A few weeks after that it was official.  Although they don't call it Asperger's anymore as the new manual subsumes that diagnosis under High Functioning Autism. 

Most of my issues are in the social, sensory, emotional, and perseverating behaviors.   Sensory overload results in (or is the result of) an inability to process all the data flooding all five sensory intakes in real time which is likely (in my self-observation-informed opinion) the root of most of the other issues. 

Who wouldn't have social anxiety if every conversation is conducted in a room with multiple blaring TV's and radios on different channels, tuning orchestras and marching bands, and a window open to big-city traffic on a sunny day with its constant flicker of light and shadow and cacophony of horns, engines, sirens, brakes, raised voices...  Now add to that a sixth channel for an equally chaotic swirl of emotion.  And yet another channel for a cascade of sensory and emotional memories triggered by all of that.  Who could be expected, under such conditions, to assign meaning to subtle changes in facial expression, body posture and tone of voice to figure out there is more meaning being proffered than the dictionary definitions of the spoken words.  It was hard enough and often impossible to capture the words and their meanings in real time.  No wonder conversations held in my presence often sound like they are being exchanged between the staff at Charlie Brown's school.

This untamed chaos accompanied by awareness of incomprehensible expectations on the part of others creates the anxiety (performance anxiety on steroids?) which leads to the 'unacceptable' behaviors like social isolation, rituals and rhythmic movements, OCD, inconsistency, getting stuck in a groove, zoning out (Earth to Joy!) giving the appearance of self-involvement or selfishness.  

That is where the name Autism for this condition originated--from the cognate 'auto' meaning self.  But I believe that is a misleading misnomer born of limited information and lack of imagination on the part of the early researchers.  What if it is all evidence of instability of self-hood--an inability to maintain a coherent sense of self in the midst of sensory chaos.  If that is so then all those manifestations of information overload and attempts to self-soothe are evidence of monumental courage and tenacity.  

Modern theories use the term Mindblind which has potential to be less judgmental and pejorative but only if those contemplating it realize that it is a two way street.  To accuse those on the spectrum of 'mindblindness' because they exhibit little evidence of being able to predict the output of other minds by extrapolating from personal experience while exempting themselves from the visa versa is nothing more than hubris and will only lead them down another blind alley.  

The assumption in play is that only the neurotypical mind is a legitimate manifestation of mind.  I reject that as I reject the idea that someone speaking another language is less human than I.  

Originally I felt enormously relieved and full of hope having the diagnosis.  It explained 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 a dearth of 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 I'd always avoided crowds and 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 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.  With a mirrored disco ball shooting light shards.  I had previously spent the pep rallies in the library but they had just made attending them mandatory.  After that 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 wasn't faking it as severe anxiety can create symptoms that mimic illness like sore skin, low-grade fever, sore throat, nausea.  It plays havoc with immune systems as well.)
• 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 got that treatment in the year following my diagnosis?
• Why I dislike being touched
• Why I like handling things with different textures and shapes and feel a compulsion to touch every object 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 booth.  
• 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 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.   Although--maybe, if I were allowed to count all the characters that inhabit my storyworlds.  :)
• Why I cover my ears and feel tempted to tantrum when sirens or trains go by within a block.  Or jets approach or leave runways.  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 enervating angst.
• Why I think in images and video clips and struggle to translate them into words before whoever is listening loses patience.
• Why my thoughts go into a free association at light-speed 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 that can be explained by a neurological condition that makes processing and integrating 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 another--one stream per person present.  Emotions another, if not separate streams for each emotion present in the environment--mine and theirs.  Spatial relationships yet another. Time yet another.  Self/Other boundaries yet another.  If having a stable sense of self requires integrating all of that and more in real time, what is the meaning of the phrase 'self-involved' in this context?

Some of the relief the diagnosis generated in me when I first received it 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 4.  A depression that reached suicidal levels several times before age 40.  As I wrote in my blog at the time: 

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?

With Respect to the Spectrum

The hope that accompanied that relief was rooted in the expectation that the diagnosis would open new doors for me like counseling that was more like coaching targeted at the issues that prevent me from living an autonomous and productive life.  I believed that defining a problem was the first step in fixing it and thus I was on my way to a brighter future.  But not so much.  Turns out the community mental health system where I'm at doesn't provide such services for adults.  And all the information I've accessed in my year's long research project has just added more data streams to the chaos.  

Yes, the information from the dozens of books, articles and videos has helped me understand my situation and develop compassion for my self and even forgiveness but it hasn't yet helped me stop creating new need to forgive myself on a daily, even hourly basis.  It has given me a sense that it should be possible to organize my self and my life to create competency and self-respect but I've yet to find a way to apply the knowledge with a consistency that even begins to mimic normal adulthood.  And now, at age 62 it is getting harder to cling to the hope for a self-actualized life and I'm overwhelmed by the sense that my self will remain as unfinished as the dozens and dozens of novels, essays, stories, and poems in my files and the dozens of unfinished fiber art projects in boxes and bags surrounding me.

But if I've learned nothing else it is that consistency like perfection is overrated and and neither are viable goals in the first place.  Hope is the prerequisite for effort and effort nurtures hope.  The process itself is the goal.  Trying the next thing when the last thing fails is the mark of maturity.  So I will continue the research and the efforts.

Following is a list of some of the books I’ve encountered since the diagnosis that have informed, nurtured or empowered me:

Academics: Science, Theory, History, How-To, Sociology, Psychology, Journalism

• Asperger’s on the Job by Simone, Rudy
• Asperger’s and Girls by Wrobel, Mary et al
• Coming Out Asperger by Murray, Dinah
• NeuroTribes by Silberman, Steve
• The Autistic Brain: Thinking Across the Spectrum  by Grandin, Temple
• Exposure Anxiety – The Invisible Cage by Williams, Donna
• An Anthropologist on Mars by Sacks, Oliver
• Mindblindness An Essay on Autism and Theory of Mind by Baron-Cohen, Simon
• Natural Genius : The Gifts of Asperger’s Syndrome by Rubinyi, Susan
• Neurodiversity by Armstrong, Thomas
• The Neurofeedback Solution by Larsen, Stephen
• The Social Skills Guidebook: Manage Shyness, Improve Your Conversations, and Make Friends, Without Giving Up Who You Are by MacLeod, Chris
• Working With Adults With Asperger Syndrome: A Practical Toolkit by Hagland, Carol & Webb, Zillah
• Self-determined Future With Asperger Syndrome : Solution Focused Approaches by Bliss, E. Veronica & Edmonds, Genevieve
• In a Different Key by Donvan, John & Zucker, Caren
• The Highly Sensitive Person by Aron, Elaine N.
• Autism and the God Connection : Redefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness by Stillman, William
• Writers on the Spectrum by Brown, Julie
• An Exact Mind: an Artist With Asperger Syndrome by Myers, Peter

Biography and Memoir by those on the spectrum and those who care for them

• The Best Kind of Different: Our Family’s Journey With Asperger’s Syndrome by Schilling, Shonda & Schiller, M. J.
• Carly’s Voice by Fleischmann, Arthur
• Funny, You Don’t Look Autistic: A Comedian’s Guide to Life on the Spectrum by Michael McCreary
• Nobody Nowhere by Williams, Donna
• Somebody Somewhere by Williams, Donna
• Born on a Blue Day by Tammet, Daniel
• Look Me in the Eye by Robison, John Elder
• Raising Cubby by Robison, John Elder
• Be Different by Robison, John Elder
• The Spark: A Mother’s Story of Nurturing, Genius, and Autism by Barnett, Kristine
• Temple Grandin by Montgomery, Sy
• Thinking in Pictures by Grandin, Temple
• A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story by Cutler, Eustacia
• Raising Blaze by Ginsberg, Debra
• To Siri With Love: A Mother, Her Autistic Son, and the Kindness of Machines by Newman, Judith
• Life, Animated by Suskind, Ron
• Following Ezra by Fields-Meyer, Tom

Fiction

• House Rules by Picoult, Jodi
• The Speed of Dark by Moon, Elizabeth
• Love Anthony by Genova, Lisa
• Best Boy by Gottlieb, Eli
• The Peculiar Miracles of Antoinette Martin by Knipper, Stephanie
• Shine Shine Shine by Netzer, Lydia
• How We Deal With Gravity by Scott, Ginger
• Ginny Moon by Ludwig, Benjamin
• The Curious Incident Of The Dog In The Night-Time by Haddon, Mark
• The Art of Fielding by Harbach, Chad
• 600 Hours of Edward by Lancaster, Craig