Wednesday, April 16, 2014

Anxiety Paralysis aka Brain Freeze...

I sometimes wish that my verbal IQ was not as (extremely) high as it is.  I have the ability to use words and language to express myself in ways that many with Autism and ACC find very difficult.  What I do share with those on the spectrum is the anxiety paralysis or brain freeze, when I am expected to express learned knowledge or rehearsed knowledge in an ad hoc situation.  The frustration I experience with this is something I have lived with all my life but only recently been able to express.

Talking with my Psychiatrist yesterday I confided that I come off much more functional than I really am, that I refuse to let people know how dysfunctional I am in so many areas of my life, that I "put on a good show" etc...It shocked me that she said to me "I know that."  That's how naive I really am.  Those that are trained to see such things really do know how difficult these things are for me.  This was somewhat of a relief for me.  I can be assured that it's not all "in my head" as some would accuse me of.  

By the time I was in 5th grade I had the verbal skills of someone in graduate level schooling, so you can imagine how this would confuse those with an untrained eye.  I can read a book, for example, know it backwards and forwards, but I cannot give you a verbal report on the book (without extensive preparation and a controlled environment.)  Also, I've never been able to express myself well to "customer service", i.e., the phone company, cable, electric, whatever; without some kind of explosive thing going on.  Firstly there is the fact that I both misunderstand and miscommunicate my needs....second is this brain freeze I speak of.

I'll have an intention to say one thing, and a complete other thing will come out of my mouth OR nothing at all will come out of my mouth and I'll just freeze in a state of utter anxiety, and then when I'm pushed to speak I'll just explode.

In a prepared speech, and a controlled situation, I can actually do fairly well, so long as there are no "loose ends" or unexpected situations coming up.  Like others on the spectrum though, if someone outside of my expectation comes up, I come completely unglued and there is really no telling how I am going to react.

I wish I could describe the depth of loneliness I experience.  While in recent years I've got to know others born with ACC and ASD many if not most live too far for me to have any meaningful close contact.  I know there are people (particularly now) in my life trying to help and assist me, but I cannot help thinking that they cannot fully understand the pain and loneliness, the sadness that I feel.  I want to be appreciated for who I am not what I am not.  But most who know me know me for what I am not.

There is a terrible disorder where someone can become completely paralyze from the eyes down, it is called "brain lock" and for all intents and purposes these individuals are locked in their skulls as the only thing they can voluntarily move (sometimes) is there eyes, often doctors even thinking they were "vegetables."   I feel not much different than this.  It seems no matter what I say or do, that no one can see or feel inside my world.  My only hope is that these words I write help you'all to do so, as faulty as they are.

Currently I have doctors and therapists, soon even Adult Protective Services all looking out for my well being, yet I still feel like a "vegetable" with brain lock, only wishing you could enter my world and I could enter yours.

~J

Monday, April 14, 2014

Intention vs Initiative, the "should be" and the is...

I am going to try to put words to this most difficult of concepts (at least to me...)  I could just as easily title this post "obsession vs uninterested on a dime."  I'm not quite certain how the two (exactly) come together but the two different concepts are related in my life.

While procrastination on some level is normal for individuals I'm not referring here to a lack of initiative based on that.  Rather, I'm pointing towards an anxiety that runs so deep as to be paralyzing.  If I were playing Let's Make a Deal I would freeze, simply due to the fact that there was a door number one, two, and three.  If there were two doors, I'd feel uneasy, but I could make a choice, three, fugetaboutit! 

Peoples born with my type of neurology function better within a range of limited possiblities. There are types of therapy that function to empower an individual rather than direct them.  For example instead of saying "do you want A or not?" one asks "do you want A, B, or C?"  Theoretically people do not feel challenged, but personally "in"powered so they therefore are moved to make a personal choice...or so the theory goes.  But whenever such approach was offered to me I would move into a state of complete anxiety and freeze up and never understood why I did so (of course, now I do.)  This phenomenon takes place even down to the most "simplest and benign daily tasks" of my life.

I can (and have) read hundred of books, take and do hundreds of hours of cognitive therapy to try to "understand" how to function in the world, yet for me the world on paper (intellectually) never meets the world (tangibly/realistically.)  I can rehearse a behavior, an idea, a practice, function, theory or course of action in a controlled environment, and even excel  within the controlled environment in performance of the object of my attention,  yet when tasked to perform the same in a real world scenario I freeze up and am unable to reproduce the same.


Since the discovery of my diagnoses(s) I have come a long way in disregarding the self hatred, self blame and disgust that I have heaped on myself over the years...having said that, it is still a daily battle for me to remember that I am good enough, that I am who I was born to be and cannot be any other than that.  Knowing that I am the King of Unfinished Business, that I have hundreds of thousands of unfinished projects and ideas, (probably even more than this) really dampens any attempt at bolstering my self esteem.

ACC brains can only handle one simple task at a time.  Truth be told all human brains can only handle one task at a time.  The concept of multi-tasking is in itself a false one.  People that appear good at multi-tasking are not in fact managing several tasks at one time.  The science shows that they are quickly able to move back and forth between multiple tasks, multiple thought streams, managing them, and more or less moving to each one as needed.  This is part and parcel executive function the very thing ACC brains have difficulty with.

For me to complete any task, it must be broken down into its most simplest and basic components, and the other components must, more or less be "hidden from my view" or I will immediately become distracted by them.

And to make matters worse, many of us seem to live on a binary flip switch of obsession vs uninterested.  While I found this image online and it is meant as a joke (to some) it is a grave reality to others.  It can annoy, perplex and even frighten neuro-typicals, can disgust them, or lead them to believe things about us that are untrue.

Some of my lifelong obsessions have never changed, but within the primary obsession is found change all the time. 

Many on the Spectrum (ASD) and many ACC folk have great difficult with Theory of Mind (as I have mentioned before several times,) and while I certainly have difficulty with it (for me, it "comes and goes" quite often) when I am aware of it, what I do have is quite highly developed.

I believe this is because I have had a lifelong obsession with psychology/philosophy/metaphysics and religion...in short my very obsession is with what psychology terms "magical thinking" in children, but I believe to be the basis of myth, philosophy and religion.  My obsession has always been with that which cannot be seen with the human eyes.

Yet my autistic struggle to make black and white sense of something which is (inherently) a grey matter has been a lifelong cause of great consternation and frustration on some level.  My need for "orthodoxy" my need for clear cut boundaries where (for me) none such exist, can be maddening at times.  Through it all, through all the religious and philosophical systems I have not simply studied but deeply dove into I have discovered a Golden Thread.  This Thread can't be defined tightly, but is understood, certainly one the likes of Joseph Campbell thoroughly grasped this Thread as it was the cornerstone of his entire ideology.

Getting back to the main subject though, from "the outside" from appearances...others that observe me only see discontinuity and confusion...on Monday I "HATE BROCCOLI" next Friday "Broccoli is the greatest, I've loved it all my life, couldn't imagine life without it"....but for me there is no conflict, last Monday's person does not exist to me.

So many things I can easily obsess on, clothing, dress, lifestyle, and just as easily I can ignore those things in a flash.  I can't imagine how befuddled this must leave those around me who observe it from the outside.  In "Eastern Speak" the only One that ever remains through all of this is the Witness of it (the ultimate in Theory of Mind, actually), and if I had no inclination nor knowledge of That I'd have simply no will to live in this crazy mixed up jumbled up brain and body of mine.

Sunday, April 13, 2014

ACC is...

(I freely admit adapting this from someone else's Facebook post, I saw it and it reminded me of myself immediately:)


  • ACC and ASD are being bullied just because you see things differently or do things differently.
  • ACC and ASD are when you have to suppress who you are in order to be accepted,
    even though those who claim to accept you may never really like you.
  • ACC and ASD are when you see people around you acting funny as if something is wrong;
    you wonder what is causing them to act that way only to find later that it was you they were reacting to.
  • ACC and ASD are the shame and embarrassment parents feel when friends
    question their child's behaviors. Many children are punished for behaviors they cannot control.
  • ACC and ASD are suddenly screaming at a friend who was angered because you are confused about an emotion they've shown attached to something they've said which does not make sense, so you inquire and they take it wrong.
  • ACC and ASD are being so desperate for friends that you are willing to buy things in order to entice friendships, but still devastated years later when your "friends" tell you they were only using you.
  • ACC and ASD are when family members don't want to be around you anymore because you have absolutely nothing in common. It is as if being shunned for bad behavior or becoming a pre-teen or teen means you've aged-out of being accepted.
  • ACC and ASD are when your 5th grade teacher doesn't question why you walked out of the classroom nor does she make any attempt to call you back.
  • ACC and ASD are being left behind, forgotten, ignored. It is a lacking.
    The lack of ability for people to see your beauty, truth, intelligence and viability.

"The thing is what you make of it" or Theory of mind revisited...

The presence and awareness that "I am not my thoughts; thoughts are things"   is not always clear to me as it is to other peoples.  How easy it is to be swept away in the oceanic flow of images and idea and obsessions coming at me non stop. The nonstop storyteller in my head easily rivals and J.K. Rowling or Stephen King....would I could I find a way to express that and use it in some positive sense, then I'd have something concrete....

So wrapped up am I in the world of image(ination) that it dominates my attention.  This is much less so when I am living around someone else who provides a "touchstone" for me.  When Troya lived, she was so much a part of my life, yet simply having someone around was enough to ground me more in the here and now.  Lacking that these days, I languish and fade into the gilded cage of my thoughts and imagination, I'm practically paralyzed in regards to any real actions. 

Yet, the thing is what I make of it.

My words come from more of an explanation than an apology for who I am.
I suppose though in a real (formal) sense this blog has been my apologetic.
Sometime exorcise my demons, sometimes sit down with them for a nice cuppa chai and a chat.

There are times for which theory of mind does not exist for me, I become my thoughts and do not, can not judge them critically.  It is something I hope no one ever has to experience.  It blinks out of existence and I'm lost in a sea of free association. This is itself is profoundly disabling.

Chart showing how theory of mind is developed
Recently I sat with my neurologist and looked at the actual films of my MRI brain scan.  To actually see the deformities really got to me.

The immediacy of it all was at once affirming but but also very "final."  My own family is in denial about my birth condition.  They have been presented with the evidence countless times over but refuse to acknowledge its relevance.  I remain the black sheep of the family (well, in this case, the rainbow sheep.)

The sad thing is, on the Autism boards, and ACC boards I find I am not alone or unusual.  There are so many my age (and even younger) that are summarily rejected by and scorned by there families.

Currently I am in a frightening part of my life.  There are those that realize how easily my memory and attention are manipulated, and would use that to their advantage, sadly.  After Troya's death so much has taken place that I am clearly not prepared for, and there were, unfortunately, lined up many who would take advantage of me and manipulate my circumstances for the worst.  This has been going on for some time and has put me in an untenable situation.

I am grateful to my Case Manager as she has told me she is alerted APS (Adult Protective Services.) She feels that not only have I been manipulated but that I am being but in danger.

I wish I could explain to people how "I work," how my noggin computes, but I barely understand it myself.  I have an encyclopedic knowledge of information in my head, but when it comes to acting on said information I show real deficits.  I hope that this latest move by my case manager is going to have positive changes in my life.

~j

Sunday, April 6, 2014

The consistency of inconsistency...

I think perhaps one of the most off putting things about me (in other's eyes) is my seeming inconsistency.  To be truthful it can, at times be exhausting to me as well.  I've talked about it before, but I'm trying to write more these days from stream of consciousness, the way in which my brain works.  Some people call this the **SQUIRREL** factor or "ewww shiney!!! :-)" but that's only part of it.

About the most organized anyone will ever see me will be in print.  But this in no way represents who I am in real life.  Likewise, I talk a good game, I'm the master of the monologue, yet, when it comes time to "put up or shut up" I'll usually shut up.  This is very lonely business.

I think so many things that are "fixed" in the average personality are more "movable" in mine.  This can be exhausting.  Because of this, from early on, I have modeled and tailored my opinions and desires after that of other people, thinking theirs to be more "stable" than my own.  As a young man, if we went to the movies, if you liked it, I did, if you hated it, I did, I could not form my own opinion separate from that of others.  

I began to realize this around the age of 19.  So, at this point, I would intentionally go see a movie or a TV show, and would have to "work" to create my own opinion of it.  I would have to even question myself if my opinions were modeled or depended upon some other person's ideas...I'm so easily swayed.

As a child is with their imagination, so I am within my own mind.  The imagination in a child is that which brings the attention away from the present into the "not so present" world of fantasy.  So it is with me as an adult with ACC.  

I often don't posses the skills to critically question my thoughts, where they came from, how appropriate they are for the circumstance.  It is almost like my attention is a magnet that will attract the nearest thought, image, idea, concept...and if there is nothing there to stop it the mind will totally wrap itself around this new shape.

On the outside (to other people) this can appear confusing, confounding, even frightening.  I often evoke anger, disgust, even scorn from those who do not understand.  To them I am "all over the map" but to me I've not gone anywhere.  

Another aspect to inconsistency...no matter how hard I try, I can study, practice, repeat, try to learn something over and over again, even have it memorized, but not be able to carry the task out.  Now, I don't know anybody else like me, so this gets really frustrating and really lonely.  I have been told that I have cognitive issues with learning new things (like I needed anyone to tell me this, but it is nice to have the external confirmation.)  I have some kind of cognitive interrupt between thought and action.  I will even go to do a (certain) task and for whatever reason I arrive to do it and don't.  This is not psychological, there is no "reason" I don't, there is an interrupt between volition and action.  The first I'd heard of this was with F.A.S. as it is a real common thing in that disorder.

There is never a dull moment in the lives of those who remain my friends, needless to say... :)

~j

Tuesday, April 1, 2014

More on executive function...

Decision making, To do what with which and when, to plan, organize, execute, be flexible for contingencies... all these areas are difficult for me.  Think of it as "ADHD on steroids. I hold a lot of "fact bites" but still have significant cognitive impairments in other areas.  Basically, I am capable of great things, but frankly I need prompting and supervision and support for that to happen.

The amount of thought and information swimming around in my brain (unfiltered) would astound most people.  I live inside the free associative, intuitive, emotional way of things, to an extreme.  Simply having a human touchstone, someone to redirect me, keeps me more grounded in the here and now without all that window dressing...the human touch can be magic. The subconscious dialogue that most people are unaware of, that comes as images, and feelings; the stuff of dreams...going on during every waking moment that I am not sitting in meditation...quite maddening really. 

These are not hallucinations, but the imagination unfettered...

All of this while "at the same time, on the other side of the room" (so it seems to me) navigate the world of people and things and "solids" and "facts" etc...

Think of the ADD kid mind wandering out the window

now multiply that to the 24th power and this comes close to a glimpse of a moment in between my ears...

ADHD, so called, is not actually an attentional  disorder.  If one is diagnosed with it or knows someone who is it's observed that ADD folk can hyperfocus if they show interest in the topic.  So it isn't whether or not the individual can "pay attention", at issue is whether or nor one can regulate attention, moving it as needed, keeping it long enough on a specific task as needed, etc...at will, and consistently...  This is the area of executive function.

Take for example, the common experience of "walking downstairs to get something, but you've forgotten what it was you were going to get, you go back up stairs and you remember..." but imagine this occurring dozens, even hundreds of times in a day.   I can read a book, learn a subject well, but to put it into "practice" is an entirely different matter...to translate it into real world experience, to generalize over, as it were, into the real world, doesn't quite work with me as it does with the average bear.

At age 51, I was clearly unaware this was happening, until the age of 45 or thereabouts when I discovered I was born with ACC.  That having been said, there is no "treatment" for this, it is a cognitive dysfunction that is part of my neurology...acceptance of it, personally, has gone farther to "heal me" than would any "cure" ever concocted by humankind.  The only other alternative is to hate and despise God's creation, and how can I possibly do that?

Executive function is also all about  execution and regulation...

When I "plan" something, for me it always remains general, I have difficulty "putting myself in the plan."  If contingencies occur, unexpected events, they simply derail my course and direction, my forgetting where it was I was going to begin with.

Planning for me, when something has more than three variables, is a dubious affair.  If I am engaged with, or prompted by an other person I don't usually have as much of a problem, but left to myself I have trouble initiating even well planned activities, unless they have been broken down into the smallest parts and only those parts are presented to me.

It is strange, I have a brain, filled with facts, but in real life for me, less is more.  I thrive under structure...I thrive when none too many options are put before me.  Ask me "door #1, door #2, or door #3?" I can intellectually make a choice but the variables are so many that I am forced not to (or so it seems to me.)  Apparently part of my cognitive problems is the learning of new behaviors (generally.)  Such has to be reinforced and rehearsed countless times for me to finally adapt the behavior. There is also no guarantee that I'll be able to consistently repeat the behavior over a long period of time, having to start all over again.  I know that "average" people don't experience anything like this.  Just imagine how frustrating it is then.., for me.

A friend commented recently on "how well I compensated" given my disability.  I do not disregard her words in the kindness they were meant, but there is another level to this as well.  People only think I compensate well, because you see the outside of it, you are not living through my eyes, walking in my shoes.  The old notion of a "blind person get's super hearing to cope with being blind", is none-sense.  Now I have known legally blind individuals some having excellent hearing, another deaf as a rock....point being, we tell these stories to feel better about ourselves, but they are not (generally, only specifically) true.

Certainly the turning point for me was late in 2008 when I discovered I was born with ACC, I was like the cartoon character with the light bulb gone off over his head.  It was the singular missing piece (there are still other pieces not in place) that when recovered caused all of my history to make sense.

Knowledge is power.

~j

Thursday, March 27, 2014

"But you look so 'normal' ... " :(

If I had a nickle for every time I heard that I'd be wealthier than Donald Trump.  

The Rub:  
NONE of these people would care to be around me long enough to see how I interact in "real society."  They either know me online or casually through a group or something, but have never seen me "in my own element."  I had someone the other day on Facebook message me "you are the most together person I know," it was at that point I realized this person knew absolutely nothing about me, and how hollow their words/comments were.

It is true, many with ACC and ASD "put on a good show" we can perform good on certain types of tests because they are in a controlled environment.  But life is not a controlled environment and never will be, and to think that the same results one gets in a clinical interview will necessarily reflect those in a social setting is ludicrous.  Thankfully skilled clinicians understand this and these factors are most often taken into account during testing.

I studied to be a Medic, was top of my class, but could not work as a medic.  I even did basic training in the military.  Basic was difficult, but I succeeded, but when I was put in my Advanced Individual Training there was so much less structure and discipline that I completely fell apart.  I went to Massage School, I studied Hypnotherapy, Studied Psychology, same difference.  I have a "high technical aptitude" in some areas, but left alone to carry out technical tasks cannot do so.  Then I get told "you just didn't try hard enough."  I said it in  a previous post, but I am sick and f*ck*ng tired of hearing that, because it simply is not true.  In fact in many areas I have tried and tried to my detriment, piling up so much self-guilt and self-shame that it was paralyzing me.

My sense of time is different than yours, compare my 24 hour day to the things you think about and do in a month, and you come close to the activity in my brain.  Were it not for the stillness of meditation I know I would have taken my own life decades ago.  

A never stopping flow of free association and imagery with with single breath I take; every thought I have has a thousand counter thoughts and images, every single waking minute (and sleeping minute) of my life.

Because I don't have a Corpus Callosum I have complicated issues with memory.  Sometimes a memory is not recoverable, or doesn't even form in the first place, and when that happens my brain confabulates an answer.  Sometime I do, but most often I have no idea this has taken place and will argue my point of view.  It could look like this:

My mother would ask "did you take out the garbage" and my mind would manufacture an image of me putting the garbage in the can outside and I would say "yes", (I was not lying to my knowledge I put the garbage out), then she would still see the garbage in the kitchen, I would be beaten for this (and similar) and eventually branded a "psychotic liar" by my own father.  Thing is, I had absolutely no idea that any of this was taking place until I discovered my ACC, and even know I am only vaguely aware if and when it happens, mostly by the reaction and response of those around me..

Much as Temple Grandin speaks about I think entirely in images.  I don't know if others with ASD
experience this or it is an ACC thing or what but for me those "internal images" are overlayed on top of "reality" on top of external imagery.  This doesn't mean I hallucinate images, it does mean that my brain is telling me to see things in ways that are entirely inaccurate, or at the very least not in line with what the majority of others see.

I'm fatigued, tired by the humiliation and derogatory insults of others.  I can not accept the premise that "something is 'wrong' with me" because this is all I have, and what I am born with, and it is not going to change.  

Well meaning people saying "but you don't look _____" don't realize what an insult, what a put down this is.  Usually people say this, because it is too frightening, too uncomfortable to believe the truth that is being presented to them.  I see it mostly in people my age and older, as that generation has some queer attitudes and ideas about mental and developmental disabilities.

signing off for now,
~J

Wednesday, March 26, 2014

A Struggle with Orthodoxy, the Black and White and the Grey... Rigid Thinking...

I would wax eloquent; I would speak on the difficulty of grey in my life...

Many of us without the Corpus Callosum have this difficulty and other DDs like ASD have this in common.  While it is classified as "rigid thinking" this does not (necessarily) denote stubbornness (it can, though.)   I have a great deal of difficulty with executive function, decision making, planning and execution, flexibility to change or interrupt routines.  Largely however I have no say in this.  I have always been told I needed to "try harder" when at 51, I am promise you that I have done this all of my life and it has gotten me mixed results at best.  I can rehearse and know the steps to do something, but left to my own devices without external prompting there is little consistency in these important areas of function.

I have a seeming encyclopedia locked up inside my head, but using it in any "common 'ordinary' daily task" requiring planning execution and contingency... 'fagetaboutit'  I can go through a training and ace the studies (and have done this is several vocational areas) but when it came to the social interaction and my ability to cope with the "administrative and executive mental tasks" especially planning and memory, execution.  At 51 I'm still inconsistent with my ADLs without prompting from without.  I would just "be in my mind" all day long lost in a train of thoughts from one to the next; right brain dominant in almost all matters.  

The inability to change the mental "track" we are on is something noted in people along the spectrum, and with ACC and other DDs.  I have mentioned this before, but it is the question of not seeing the trees through the forest.  I see the entire picture and have trouble breaking things down or "chunking them down" in any way that I can understand.  I see the whole forest and the the individuals trees are entirely out of focus. They don't even exist.

All of this, and I find myself in the most difficult and trying time of my life.  It has only been 6 months since my best friend passed from cancer.  In so many subtle and some no so subtle ways I was dependent upon her, and now that she is gone I am in the untenable position of caring for myself without the needed skills or resources.  I have lots of people offering lots of suggestions, but most of them boil down to my selling off, or tearing up my life, "getting rid of" my children Boris and Natasha (my dogs.)

Inflexibility and rigidness can also impairs my ability to adapt to a changes in routine. I can work hard to establish a habit or pattern, say that has steps "A,B,C, and D" in them.  You come along, and insist I use step "W" because it is "correct" or works better or whatever, and in doing so, you have completely unraveled all the hard work I put into creating the habit in the first place.  I will be luck to ever establish that pattern again.  People see this behavior and they chalk it up to stubbornness, but for me it's not, it is just the way things are.  

This situation becomes all the more painful when those around you start pointing fingers of blame and pronouncements of responsibility where in fact none lie.  Many like myself beat ourselves up emotionally much of our lives because we believe the maxim "you just need to try hard enough," and we are always looking for the magic bullet (that does not exist) to "cure" us of this.
I have such difficulty with executive function, i.e., planning and execution of, and interruption and regulation of tasks that I often cannot even remember that I started a task, so that task does never get finished.  I am weary, exhausted, fatigued at having to (or feeling I need to) explain myself to others, especially in light of the fact that they just do not get me. It's like asking someone who speaks German to listen to an essay in Japanese on Nuclear physics and they are just in 5th grade to boot~ :(

This post is ending, short and frustrated, because that is where I am at today.  Sorry I can't be my "chipper self" (whatever that is) for all of you.

Regards,

~j

Monday, March 3, 2014

on the fringe...

on the fringe 
1. Lit. at the outer boundary or edge of something. He doesn't live in the city, just on the fringe.

of society...

I don't mean a particular society, American, 2014, white, blonde hair and blue eyed, or any other.  When I am referring to society, I am speaking of it as archetype.  I have always felt a pilgrim in this land.  Connected yet not even so...

Of all the labels that would be thrust upon me by the world, "white", "gay", "disabled", "Sikh", "animal lover and rescuer".., and on, and on...unlike so many caricatures of autism; AgCC folk want to connect socially, we often strive for it, but we constantly see our subtle communications skills miss the bulls eye.  Not once, not once in  awhile, but as a way of life.  

Non typical folk like myself often learn backwards of the average bear.  For one thing, we have difficulty generalizing one skill or understanding to similar or related situations.  It isn't until we have many many examples of that skill set, or knowledge, in differing circumstances, only then does our brains make a rule.  Average don't see the forest through the trees; I don't see the trees through the forest.

I find it remarkable, that this striving "against all hope" was part of my personality from early on.  I never wanted to know what, I wanted to know why.  Recognizing from an incredibly young age that I didn't think nor experience the world remotely like anyone else around me, I felt like an alien in a strange land.  This even came down to the relationship with my family, to all of our detriment.  At the same time, I wanted to belong, needed and wanted a niche; a society place to call "my own."  And it is only now at 51 I am realizing that we are one human family, and I in my difference belong in this family, make up a necessary part of it, and that my presence can better this planet and those that live upon it.  Yet there is still the struggle.

I imagine, for the rest of my days, "society" will elude me.  Funny thing though...

There are those who love me despite, and even because I am so different.  They love an accept me for who I am, call me their family and I them.  

More than a simply philosophical construct, I really grok the human family...

a dynamic relationship experiment on the global human scale...we are all in school, that is, all of us as human beings (should) strive to better ourselves and the understanding of ourselves, and we should support this in all who me meet.  

Whether it be my family, my occupational (limited anyhow), social or spiritual associations I have always felt "left out" of the inner circle.  I don't drink or do bars anymore, but I remember feeling the "stranger in a strange land" in the GLBT world, I feel the same in my educational, vocational, political and religious labels as well.  It can be rather frustrating.  This is compounded by the fact that many ASDs and AgCC doubt our actions all the time..."did I say the right thing," "did I do the right thing,"  "did they misunderstand me?" "how do I get my point across?"

I guess my reason for writing this...if you are neuro-typical, please try to understand the struggles we go through on a daily even hourly basis.   Do not misunderstand, I love my life, just as it is, I wouldn't change a thing, but it is a daily struggle of connecting and belonging.

This is hitting me so hard right now as it has been 4.5 months since I lost my best friend and spiritual sister to ovarian cancer.  She was the first person I could ever relate to without fear of being misunderstood.  She herself was most certainly not typical, and we spend our days in complete acceptance of the other, despite what our families and acquaintances did.  I watched her grow in her last five years, more than in her entire life, and the same is true for me.  Now I'm utterly lost without her (I'm being over dramatic here.)  I related to her so entirely.  It seems that her family as deeply misunderstood her as mine did myself.  Because we shared that, we lived in an environment of utter and complete acceptance of the other, with all our wonderful differences and imperfections.


It is just before dawn now, as I finish this post, and as is usual this time of the morning, I am thinking of her, and thanking her for her presence in my life, in life, and even more so in her "death."  The body has dropped, but the lessons, the loves, the friendship and belonging she gifted me with is stronger today than even while she walked the Earth...I love you Troya, and I miss you terribly.  Godspeed in your Journey to the next Whatever <3

~joseph

Wednesday, February 26, 2014

Nice to know some things are on schedule

As I write this I'm 51 years old, and I've never been more content as I am right in this moment.  Nevertheless mamma never promised me a rose garden!  

I have been struck by this overall sense of being comfortable in my own skin.  Sharing the experience with others I'm told this is common for both men and women around 50 or so;  you've lived a while and experienced much, and in my case "backwards generalized" the entire catalog of the school of hard knocks and plateau experiences and began to make sense of it all.  

Doesn't do a thing for my memory and organization of my thoughts...

anyway...

I'm starting to access services that can help me such as OT, PT, having an IHS worker that helps me when I need it.  So, no, not exactly a rose garden, but Life nonetheless...

Contentment.

There are a lot of changes occurring and shortly occurring in the future...and considering I don't do well with change, I'm handling life with grace, and a new kind of confidence...

Change the world, one person at a time, and start with yourself!


Thursday, February 13, 2014

A Peek into Genius (my brain) . . .

A N D . . . 5,  6,  7,  8   .   .   .

Stream of Consciousness posting...

(What this means is that there is a method to the madness, a means to an end, but you cannot see it!  Assume this with me always...)
Brains are all different, you see.  Some will talk of "normal" or "typical", please someone show me this...I've not ever seen it in myself, nor have I seen it in an other.  Just as with ASD and ACC, generalizing knowledge is not my strong point...  A child (or adult) with ASD and often with ACC views the world through our particularly unique rose coloured glasses.  As an example; a "typical" 5 year old who has been told "don't cross the street without looking first" while crossing Main St, infers and generalizes that (s)he should not cross any street without looking first.  SAY it isn't SO?~?~?

Someone with my unique neurology experiences life differently:
If you tell me "don't cross the street without looking first", I won't, at least I won't cross Main St. (the street you told me not to cross) without first checking to see if a car is coming towards me.  However, I will, most likely walk over to Broadway and run right across the street with no concern for oncoming traffic.  And (I know, don't start a sentence with "And") likely this will be true for 1st Ave., and 2nd St. too.

People with ASD and ACC often "backwards generalize."  This is how it looks.  Mum tells me "don't cross this street without looking" (Main St.), then she takes me to Broadway and she gives me the same admonition.  Again, she takes me to 1st Ave. and 2nd St. and does so again.  Now I have 4 different examples of how things work, and from this I "backwards generalize", I now create a new rule, thought, behavior, etc... based on my experience with mum and the four streets she took me to.

Repetition, repetition, repetition, and more repetition...We may even state "I got it! I understand", yet will not be able to complete the task in question, until we have actually performed the task under "supervision" many many (did I say A LOT?) of times.  In the old days, teachers taught with the method "See it, hear it, do it" and this works well for people like myself.  In fact all children learn better with that method, because it covers all the main modalities of learning (visual, auditory, and kinesthetic) and so regardless of the child's strong points or weak point this method appeals to all the modalities.  Less than 5% of the planet learns kinesthetically (by touch, movement, performance) and I am one like that.  In fact, I almost entirely learn that way alone.

It looks like this:
I see what you've shown me, and I hear your explanation, and perhaps even have a good cognitive grasp on it, yet I will never  be able to perform the task, unless not only shown, but having myself being "put through the paces," through the actual exercise of practicing the task or knowledge  physically, tactically, operationally, etc... and with supervision and prompting.  For me, individually, I might even have to be put through the task dozens and dozens of times for it to "take" both cognitively and as a discreet behavior (actualizing not simply memorizing facts about something.)

Of course, I was born without a Corpus Callosum so their are quite literally two sides to me.  There are with most typical folks too, but they often go unnoticed as discreet and unique processes as they do with me.  For most there is some level of integration...

For many years I felt like the Greek myth of when the Gods created mankind.  (Wo)Man, was created androgynous ("Adam and Eve" were one being, as it mentions in the Torah, not two beings, in the beginning), and they were joined at the back.  The one is always completely aware of the other, yet not able to see, nor touch, nor directly apprehend / comprehend the other.  The myth further states that this created human being moved around through life, almost like when we did a cartwheel as a child, and hopefully the two sides are cooperating, and travelling in the same direction; if not at very best is halted jerky movement, at worst, no locomotion at all.

When I began learning about my neurology, this myth appealed greatly to me.  I felt it described me to a T.  So I began to honour all my disenfranchised parts, so to speak.  I have haltingly, tried to operate from a viewpoint of logic only for most of my life...tried to "figure things out."  This never worked well for me though.  I learn by doing, not by thinking.  I learn by experience.  I learn if and only when the knowledge, skill, behavior has become a gestalt (a whole, 3 dimensional and felt experience), short of this it is only "words in my mind."  Linear words at that, no inference, no colour nor comparison, rather black and white, on and off "facts" which bear little resemblance to reality.

The concept of linear words vs words that are in themselves a gestalt (a felt whole experience) such as the Japanese Kanji, (the adopted logo-graphic/ideographic Chinese characters (Hanzi) that are used in the modern Japanese writing system.) both a Chinese and a Japanese can read it, understand exactly what it means, yet call it something entirely different, still understanding what it means, because they share a common concept.  It does not represent a sound or a (?) phoneme, but a "seed concept."  These seed concepts even built upon each other changing meanings organically, much like a DNA sequence chain.

For example (and I am making this up for ease) a small line, representing the idea "straight."

From that is then compounded another image in the character that represents a shift in the meaning, with the new strokes in the image "straight" becomes "arrow" etc. and it works more like organic language tiny concepts, but fluid in use of expression.

Our Western language systems however, are based on phonemes, and an alphabet ( a representational sound system.)  My brain doesn't do this well, reading can be quite an effort with a disordered working memory and diminished executive functions...  It is like "translating it twice"  going from the words to a concept, then to an image.  I already have the image, that's how my coconut works LOL. Although, for example , the Japanese Katakana is a basic  system like "A, B, C" however it is used only for the unusual, or the italicized, for foreign borrow words, as the intent it approximating the original word with typical Japanese phonemes. It's used also in signs and advertising, book titles, etc... obviously focused on pronunciation as it's main intent.  

I actually owe a lot of thanks to my mom and dad for involving me very early in Judo and Karate while I was still young. I'm sure I was average, but the experience was invaluable, I learned values and lessons, regardless of any "disability" that have stayed with me many years.  And I also learned to love Japanese culture, in my not so different search that everyone really goes through as they mature and move out into the world.  One of the things I gained from this is an understand of Kanji.  When first exposed to an ideographic representational language system, I felt, for the first time, like a fish in water.  I found my element, so to speak, and found it ridiculously easy.  Today I understand perhaps 2000 of the 3000 Kanji commonly taught in Japan for primary education, I can just about read a Japanese newspaper.

Regarding language, my brain also has its unique abilities.  I am multi-lingual, have competency in perhaps half a dozen languages (even Western ones), but I didn't learn them the way a "typical" person would.... In my case, simple exposure to the spoken language for a long enough period of time, and I do that backwards thing I spoke of.  I learn vocabulary last.  I start by listening to the cadence of the speak, inflection, and syntax.  You may wonder how I can comprehend syntax prior to (advanced) vocabulary, but I pick up basic vocabulary by examining syntax, and phrase structure grammar... not the "normal" way of doing things.

I think in 3D....have practiced meditation my entire life, and find ridiculously natural, skills that many spend their lives trying to perfect.  I not only can visualize any object perfectly internally, but can even project it outward into my (actually visual/physical) field of vision...for example I can image-in an apple and set it on the desk here next to me, eyes wide open....I can then pick it up, feel its texture, smell it, and bite into it, hear it crunch, etc...

Internally it is even a bit stranger...When I "see" something inside, it is primarily, anyhow, not visual but kinesthetic.  I "wrap myself around" an object, and I "see" it with my felt sense.  In the same way you use proprioception (the ability to know where your body is in space and in relation to things around it) externally to navigate the world, I use it internally, to navigate or "feel around" an image.

IF I can do this, then I spontaneously can hold its perfect image, internally, and even externally....YEAH confabulation (it is the imaginative confabulatory process, I believe, that allows me to do this.

In short, you think in words translated to concepts then images, but I think in images translate that to concepts and words most naturally.  Yet for me it has texture and shape, form, colour.  The kicker, this never shuts off.  My brain is constantly producing streams of tens of thousands of images...it gets quite crowded in here (and in hear LOL.)  I have something called sensory disintegration disorder...the typical brain, able to manipulate and order the 6 senses (the 6th is that ability specifically) is easily overwhelmed in me, sound, light, and touch at times can be penetrating and excruciating to a degree I would not wish on the worst of Hitlers.  The technique of deep sensory stimulation, has been quite literally a Godsend for me, the only thing that orders my disordered senses, and does so completely and quickly.  If you are AgCC/ACC and or ASD (or even ADHD) the likelyhood is you experience at least some of this sensory disorder. The link in this paragraph leads to an extract of a study that explains the technique and its use in some details...my thanks to Temple Grandin who helped rediscover and mainline the knowledge and application of this technique.

It is now time to give this brain a rest...thank you for listening....now back to your regularly scheduled programming.

~joseph
~gurudaasa

Sunday, February 9, 2014

Juggling and brain function growth plasticity...

No I cannot grow a missing corpus callosum & neither can science (yet, but that is way too Frakenstein for me to even consider) but the long assumed evidence is in.  We knew the brain remained largely plastic cells continuing to grow and migrate throughout the body until about age 26, with the rapid development of the nervous system slowing down about then...but this is amazing:

Did you know that neuroscientists are now getting into the juggling act? Brain researchers at the University of Regensburg (Germany) have found that learning to juggle can change brain structure.



The researchers divided 24 people into two groups:

  1. The Juggling Group: 12 subjects learned a three-ball cascade juggling routine. 
    They were considered to be skilled jugglers when they could juggle for 60 seconds.
  2. Non-Juggling Group: 12 subjects had no juggling practice.

Magnetic Resonance Imaging was used to measure the size of different areas within the brains of the subjects. Brain scans were taken before anyone practiced juggling, three months after the jugglers practiced and three months after the jugglers stopped practicing.

At the first brain scan, there were no differences in the brains of the study participants. However, at the second brain scan, a significant expansion was found in two areas (the mid-temporal area and left posterior intraparietal sulcus) within the brains of jugglers. These two areas of the brain are important for processing information related to moving objects. No changes were seen in the brains of non-jugglers at the second scan. At brain scan #3, after the jugglers stopped juggling, the brain expansion seen earlier was reduced. 

This data suggest that learning new skills can alter brain structure. However, it is unclear what exactly caused the brain changes. The expansion in the two brain areas may have been caused by an increase in the number of nerve cells, glial cells or synapses.

Further research may provide therapies for people who have brain damage. For example, it may be possible to design an exercise program to target a specific area of the brain to repair damage and restore function.  I think we have a long way to go, but it's nice to see the archaic "you'll only ever have what you were born with, and it's all downhill from there" view of the brain and nervous system, begin to choke and die.  I foresee great promise and development for the betterment of us all with thinking like this.

Comments?

Saturday, February 8, 2014

Complexity of Emotion and Social Interactions....Finding Balance...

First, to all my readers, I apologize for not having written all month.  Many of you are personally aware of the activities in my life right now, and aren't surprised, but others do not know.  My thanks to all who continue to call me there friend and reach out to me.

Reflecting (and frustrating) on how easy it is (or appears) for others to read the emotions, intentions and subtle clues in human communications.

There is this "land" where all of that occurs, yet Gandalf stands there (where my Corpus Callosum should have grown) and shouts YOU SHALL NOT PASS. Throw in high functioning autism and Oooooh Macarena...


I work hard to find a balance in life, that I never quite seem to apprehend on my own...

I write quite a bit about not being pigeon holed, labeled.  I speak about how for the most part labels have served me, rather than hold me back, however there is yet another side to this.  I have always had difficulty asking for help...scratch that...I have always had difficulty articulating exactly what I need, the "help that will help" me.

Growing up this was so very difficult.  Like most high functioning non-typicals of my age and generation from the outside looking in we appear "normal" often enough (at least this is what others say, personally I have no concept of what normal even really means, other than an arbitrary social designation.)  Both ACC and ASD are spectrum disorders though, and spectrum does not necessarily denote an A-Z, or 1-100 scale that an individual falls along a line upon.  Rather it looks more like a block of Swiss Cheese.  This is because, (to use the previous A-Z, 1-100 scale) it is not that "everything to the left is dysfunctional, and everything to the right functional." It is more like, say, I do good with A-F, but have G, H, I, missing, I got K, and L, have M missing, N through V works some of the time, but not all of it, and W, X, Y, and Z, I haven't a clue.

People judge us by there own subjective view of us, but never consider what it is like for us, never walked in our shoes.  I've said it before, and I'll say it again...if many of these naysayers spent one twenty-four hour day in my shoes, they would be huddled up in a corner, in terror and/or tears.  I don't say this to promote a woe is me attitude, I only want others to understand that the world looks mighty different through my neurology than it does yours. (And the truth is, this is true for everyone.)

The balance that I have had difficulty finding is between discovering and improving my spectacular skill sets, while at the same time, being able to admit those things I cannot, nor will ever be able to do without help from others.

Many of my close friends, and those who follow my blog, know of my best friend and Soul-Sister Troya Patch.  Troya died October 2013 after a long battle with end stage ovarian cancer.  I became the Trustee of her Estate and felt I could do it all on my own. (I had managed a Trust some years ago, but, as it turns out, that Trust was an extremely simplified version of what Troya did for her Trust.

I recently sat down with the Trust's attorney, and we went over many things.  She also gave me documents to read.  I was overwhelmed by the meticulous details and sequential happenings that must take place with a Trust.  The attorney explained to me that no one could really be expected to manage a Trust on their own without legal assistance, let alone someone with my neuro-differences (my comment.)

People with Autism and people with ACC both often over think things.  We often imagine scenarios that have not yet taken place and we worry, worry, worry about it, while at the same time loosing touch with what must occur in the present to have life run more smoothly.  The truth is, that managing (or attempting to) the Trust has pushed me to the brink, to the edge.  The most amazing thing though, this wonderful woman, my sister Troya spent her last years encouraging, nourishing, and supporting tremendous growth and change in my life.  She alone "held the pregnant space", the nurturing environment in which I was completely allowed to be myself, discover, forgive, embrace and love myself.  Over the past 8 years, but particularly the last 6 I have gained more social and emotional skills than I have in my entire lifetime.  I owe this to my hard work, the dedication of doctors, OTs, therapists and more, but especially to Troya.

In the words I used with my MD "If this had happened (Troya's passing) in my life, just 10 years ago, you would be peeling me off the streets of LA and hospitalizing me."  This has been a test that the Divine has given me, not for Her benefit (the Divine's) but for my own.  This entire time Troya has been whispering over my shoulder to stand up to  the person bent on  bullying me, reminding me of the "metal" I am made of that I made it through 18 months of my own chemo and immunotherapy, and lived.

So I'm always asking the question where do I draw the line?  There are those who would (who have) judged me with the same line of bullshit my parents did for years "you just aren't trying hard enough", and there are those that would even discourage me, telling me "you just aren't cut out for that, accept your differences."  There must be a balance in the elusive middle somewhere though.

It is easy for me to be so caught up in who and what I am not, and not capable of, that I forget I have skill sets that some deem incredible, that you likely will never have in your entire life.  This is changing too, but more slowly.  I'm in the process of writing a book about living with ACC/ASD and my journey along the way.  I am forming my own Mobile Notary Public business (which I will write more about in the very near future),  I am actively reaching out and helping in the lives of others with my peculiar neurology and their families.  Becoming a Notary Public is a huge accomplishment for me.  It may not appear so to others, they might role there eyes, but to that I say f*ck y**, no one has a right to judge me, and especially not by their own standards as a benchmark.

But, in order to do this, I must always keep in mind that I cannot meet all of my own needs without help, and this will likely be the case until I am old and draw my last breath.  I don't like to admit that, I still have the echo in my head of my father saying "why can't you just be normal, why can't you be like everybody else?"  (The answer is two-fold, there is no such thing as "normal", and no one is like anybody else.)

I want to thank everyone who has and continues to help me through this most difficult time in my life, especially my soul-sister Troya Patch.  I want to thank those who believe(d) in me, even when I have difficulty believing in myself; for being a constant encouragement and support.

I had wanted to already be writing more on my blog since January, but my life has been so fully with things to do, and only now is slowing down to a dull roar where I think I can pick up where I left off.  Be expecting to hear more from me soon.

Every single day now, I get emails from people directed to my blog, who either have, or have a child born with AgCC and/or Autism.  They relate to me how important it is the work I am doing.  I am peculiar (in more than one way LOL) in that in the past 8 years or so, I have developed a very strong theory of mind.  TOM or Theory of Mind  is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own.  Deficits occur in people with ASD, AgCC, Schizophrenia, Attention Deficit Hyperactivity Disorder,  as well as neuro-toxicity due to alcohol abuse. Though there are philosophical approaches to issues raised in discussions such as this, the theory of mind as such is distinct from the philosophy of mind.  


Temple Grandin
  In short, I am able to help parents of children born like myself understand what my own parents could not (for lack of education and information.)  I can help them peek into the AgCC brain, much the same way as my hero Temple Grandin helps others peek into the Autistic brain.  

Albeit, AgCC is also a spectrum "disorder" and even though their child may turn out to be very different than I, they can still get a round about approximation of what it must be like to be their child.

My parents did not have this, and I will never be able to fix that in my own life, however, knowing that I am making this difference in others' lives gives me a joy and peace I cannot even describe.

To all my faithful followers, I bow in reverence and touch your feet (a sign of humility and honour in my traditions.)  We are all teaching, and learning from each other.

~joseph

Wednesday, January 1, 2014

Until all the pieces come together...


For a long time I remained obsessed with the greater picture.  In other parlance, I couldn't see the trees through the forest.  My brain deals with whole images, and has difficulty with constructs made of many parts.  

This "reverse polarity" also shows up in regards to  the way I learn verses the way a "typical" person learns.   A "normal" child will learn, once (s)he puts there hand in the fire, that it burns and never to do it again under any circumstance.  If (s)he sees a fire again in an altogether different circumstance, (s)he generalizes, learns from a single example and then applies the knowledge to an other part of their life.

But a child that is not neuro-typical might not learn it that way.  Rather we learn by the eventually collecting of various situations and form an understanding that they are related.  We don't generalize our skills well into other domains of our lives.  Speaking for myself, many of us feel compartmentalized and split off from parts of ourself (I don't mean in a multiple personality sort of way, rather that our "theory of mind" or conceptual framework that "I am not my thoughts, thoughts are things and I can examine and change them. others have thoughts feelings and emotions to and I can relate and communicate with them by understanding how they think")  It is only later in life, I'm now in my fifties; where I have developed this theory of mind to a powerful and helpful extent been able to implement change and growth in my life more than in decades.   Is is my opinion that theory of mind is the single-most profound gift and skill that a parent of a developmentally disabled child can attempt to reinforce and nurture.

I never had this in life, until recent times.  I had a firm intellectual grasps on the concepts, but could not "self-apply" them as I can now.  In my case it is the result of hard work, and many years of deep introspection.  I was in fact very aware of my mental processes on a conscious level, but could neither affect them nor interact with them in any creative capacity.  Self-Inquiry and meditation, many dear teachers, doctors and therapists, case managers, occupational therapists and many others now assisting me, and for the first time at 51 years old I get it....  the world is my oyster.

Later in life, I now have a better grasp on the concept of the "pieces that make up the whole person 'me' ..." As long as everything is exactly the way I want it to be, I am totally flexible... Funny? Perhaps, but true nonetheless. Our thinking, my thinking, is inherently black or white, has trouble with grey let alone the rainbow of colours.  Behavioral flexibility is another piece of the puzzle that you can introduce into even a child's needed routine.  For example, I have a very bad time remembering to and brushing my teeth.  I would even walk up to the toothbrush several times, look at it and walk away.  I then was taught about introducing flexibility into my all or nothing thinking and it would work it's way, so to speak into other areas of my life.  So, the next time I walked up to the toothbrush and "gave up" because I started walking away, I decided to grab the electric toothbrush and use it at the kitchen sink, then finish upstair with the flosser.  The next day I did the same, but walked to the downstairs bathroom.  I have "given myself options" and those options help me to follow through on thoughts and/or tasks.  

We (I) have very strict mental "lines" in our thinking process.  If even one little thing in our pattern that we have established gets "moved over" we cannot function, and are liable to get really angry, and deregulated in behavior and communications.  Teaching flexibility can change that, and the earlier, the better.  Even if your child is not yet diagnosed, work to reinforce these things, and do it now,  do it right away.  The earlier the intervention the better the outcome, period.   Perhaps in these earliest years, you can benefit and do more for your child than during the rest of there lives.  

To be fair, I'm certain my own parent knew nothing of my thinking processes persay (they had no concept of their own, what was I to expect?)  While I have worked through and healed the bitterness and pain, I must clearly admit and recognized that had I been given correct treatment, diagnoses and care from the earliest age, I would be an entirely different person today.  Be that as it may, my task is to encourage and educate others to to so for their children without reservation.

Until all the pieces come together, I'll not cease to try and help  myself and others gifted with our unique neurology.  There is quite a bit of evidence now in science that what we think of as absolute genius, Einstein for example, is actually an abnormality, often a mutation.  The spacial-visual parts of his brain are many times larger than seen in typical humans....and he (began to) unravel time and space before our eyes...

I am unique, I am different, I am, as are you, made of many different parts...we need not hide in the shadows anymore. We are your friend, your boss, your mailman, your neighbor, and we are coming out into the light and we are going to shine.  We are only "disabled" as in the actual sense of the word; society has barriers to our equal access.  This is as much true, if not more for children and adults with a developmental disability or ACC.  Our difference is often ridiculed, and scorned and "tolerated."   While I would be a liar to say that my DDs haven't held me back in life, I would not trade my brain for anything in the world...I wouldn't be myself anymore, and I would have my talents and gifts, my love and compassion and urge for equality for all.

~joseph