Encountering My Twin...

"Super Gabe" and I at the mall in Northridge, CA

I'm excited, I live in a somewhat isolating environment...I don't see a lot of people right now.  But my friend Sara who has ACC like me, and her son Gabe who is on the autism spectrum are both coming to spend a week's time with me.

It's not just that I've been isolated, I'm excited, because as Sara puts it, she's my twin, but with a vagina....and that's pretty accurate! LOL  Plus her son doesn't have a dad in his life, and he really has fun and attention when he's with me.

We took him to the ocean for the first (that he could remember) time this year...at first he was scared, then Sara said that he wouldn't stop talking about it afterwards.

Where I live, there is a local water-slide, and I'm hoping that he loves that too, I know I will!

Sara and Gabe!

When I say "twin" I mean more of a fraternal than and identical one.  Sara is her own person, and she is different from me in many important ways.  While she has ACC, and has a similar affect as I do in many ways, she's played it out differently.  

She has three great kids, and I couldn't for the life of me imagine raising kids.  Perhaps I could now, but I'd been without proper guidance for so long I'd not built up the skills and tolerances that she had.  When I think about the awesome responsibility of raising children, it just dumbfounds me.

I won't speak for Sara, although I'm sure she'd agree, there is something really special that two ACC folks can share that no one else can possibly understand (accept for another ACC folk.)  It is at once life affirming and and self affirming for us to be around each other.

When she and I would hang at the mall together with Gabe, we would just tear the place up, become chatterboxes and enjoy each other's company immensely, not something I do easily with others.

I feel that it is of utmost importance for ACC adults to have some kind of connection to their peers.  the NODCC .  There is the National Organization for Disorders of the Corpus Callosum to which most of us belong.  They have a meeting every two years for parents of ACCers as well as ACC adults.  I've not yet been able to attend, be it for time or money, but I'm hoping I can go to the one in two years (I'll have missed this one.)

I find it frustrating that the ASD "side of me" has been so researched, and well funded, but ACC is still considered an "orphan illness," really rare, but this isn't the case in truth.  Science says that between 10-14 thousand births, one is born with a disorder of the Corpus Callosum.  That really is not very rare.

This is horrible, actually, that ACC is not scanned for and more identified.  As I've mentioned in other posts, even the most well adjusted ACCer has cognitive and behavioral traits in common.  There are many walking around diagnosed, some with severe problems in life, as I had before I was diagnosed properly.  Not only do these walk around in life with self judgement and guilt, unnecessarily, but early intervention is always key to a better outcome in life.

When I was a kid, Neurologists were trained that if they detected ACC, they many not even inform the parents of it, if the child appears "normal."  The difficulty with that is that it isn't until age 11 or 12 that much of the ACC affective traits become obvious, and all that time will have been wasted.  Neurologists are not all that much better today, but there isn't an outright dismissal either.  To be fair, it is only in the recent two decades that any research regarding those born with ACC might help make a difference in lives.

I'm working on plans to spread public awareness of ACC including tv/entertainment coverage.  It is what is really needed.  So much more research and development and intervention needs to occur that is still waiting in the wings.

15 hours and counting, SO excited to see you guys! <3

Justa Guy

I wear my heart on my sleeve

This is a repost from a couple years back, in light of sanity and justice and GLBTQ folk beginning to have their civil rights ratified, I'm posting it again...we have far to go...but this sentiment still rings true...  :

It is sure as you are Roderigo,
Were I the Moor, I would not be Iago:
In following him, I follow but myself;
Heaven is my judge, not I for love and duty,
But seeming so, for my peculiar end:
For when my outward action doth demonstrate
The native act and figure of my heart
In compliment extern,
'tis not long after
But I will wear my heart upon my sleeve for daws to peck at.
~Shakespeare's Othelo.

I no longer apologize for who I am. I have always been accused of wearing my heart upon my sleeve, but as it is the only thing I know, it is who I am, and I am loved and accepted.  

Having said that, I regret some of the ways I dealt with my being gay, in regards to lashing out in anger angainst anyone who wouldn't accept me as I was, then rejecting them.  Given the history of my disability, while I find it understandable, I find it reprehensible.

Regardless,  I am so proud of my country, so proud, even be it political and calculating, yet still from his firm convictions, President Obama.  I don't know many gay people my age that could have ever even imagine a standing president defending our civil rights.  It is called a civil right, justly so, it is not up to the popular vote of the people.  Jim Crow was the "popular" vote of Mississippi, so should we still enforce that law?  There will come a day soon in history, where all of the "haters" and bigots will fade into history, into the background on this issue.  Thank God.   

I also acknowledge the pain of those, that are now standing on the wrong side of history...the pain of not wanting to let go to old ways of thinking, assuming some sense of "permanency" in an otherwise intangible thing we call the mind, me, I, and quite a few other appellations.  One day, when you realize that God is the God of Love, just as the Rabbi said, the scales will fall off of your eyes and you will look with the eyes of Love.  I don't hope this will happen for you, I know that one day it will, just not yet.

Let us be wary though...I recall hearing one media calling this the last civil rights movement.  I am very uncomfortable with this.  Let us not fool ourselves into thinking this is the only situation in which a minority is being biased against.  Of course, the first thing that comes to my mind is the disabled.  In a country that promises life liberty and the pursuit of happiness, only 40 years ago, the disabled were routinely "warehoused", not permitted to work at an average American job, was not allowed to choose there own living situation or medical treatment, was denied equal access to public facilities.  Even today there is a bias deep in society.  After all, "that human is broken, I can't look at it or acknowledge it, I might realize I am just like him."

And yet, in a free society, I'm unsure if there will ever exist a moment in history where some minority is not persecuted.  The nature and texture of society changes throughout history,  yet the fabric remains the same.

When you look into the eyes of a stranger today, deep inside of you in your silence recognize "he or she is just like me", and treat that person as you would yourself want to be treated, as the Rabbi said.

Let all beings be happy and free,

~Just Joe

Striving for the Illusive Perfection & All or Nothing Thinking...

I have created sort of a never ending loop of expectation vs reality...This is not as abstract as it at first sounds...

I have always held myself to an impossibly high standard.  I'm not necessarily speaking this with my disabled cap on.  I believe that everyone holds themselves to impossible standards on some level.

Nevertheless, I think this pattern of life and behavior has been a great disservice for me.  It's prevalent both with those of us on the autism spectrum as well as those with callosul abnormalities like my ACC.

I think self shaming on some level is endemic to being an adult with ACC, particularly those of us that only were diagnosed much later in life.  We tend towards average and superior intelligence, although some are also intellectually disabled.  This can make it all the more difficult.  Unlike classical autism I think most with ACC wish to be social, while at the same time we clearly acknowledge we get those signals crossed and sometimes we don't get them at all.

To be clear, I'm speaking from my own experience. I have known other adult ACCers whose experience is similar. And then, there are those with callosul disorders that are very well suited in life and managing for all appearance fine (I don't really believe that though, there are some specific cognitive and perceptual traits present in all tested folk with complete ACC as myself, and they are present in the larger population.)  Their ability to cope with this brain abnormality is something I admire...

Getting back to my point, regardless of this I have always held myself to impossible standards.  That does not mean that I will not reach for the sky, but I have to acknowledge this cosmic meat-suit with it's unique wiring,  it's benefits as well as it's deficits.  If I'm not ready to live life as I show up, as I am, on any typical day, it usually means I am putting myself up against others as a standard.  This is something I think no one should do, disabled or not.

This is the standard I hold myself to; to thine own self be true...

I'm not perfect in this! :-) but it is now what I aim for in life.

This perfectionism is also present in my daily life in the form of rigid ways of doing things, repetitive, predictable, rehearsed...

On a positive note, for me it helps create a sense of order.  Its darker side shows in that when individual or circumstance interferes with the way things are done I'm left in a sort of "no man's land."  The rug has been pulled out under my feet and the world is upside down.  "follow-through" and "stick-to" circuits interrupted or not there at all. If there is any resistance to a mental or physical task, there's just a mental shrugging of the shoulders and on to the next shiny thing.  ADHD on steroids as one of my friends puts it.  With many of us then it is all or nothing. If this normal order was interrupted then I'm likely to completely ignore whatever it was that I was doing.  Self-defeating behavior at it's worst. (best?)

All or nothing thinking is also my reality, my attention very easily swayed from any task, my learn to easily give up, easily surrender.  I absolutely hate conflict, and will give in and just let an other have there way just to get the hell away from them.  I think much of this was learned early in life.

There is so much evidence with ASD  & ACC that early intervention correlates to a better outcome in life.  It's too late for me, but not parents of ACC kids, whatever your experience of your child, around age 12-13 you'll observe for the first time how affected they are socially, how they are impacted.  Be prepared, and you will make the biggest difference in their lives <3

Teach your child to trust themselves, to love themselves as they are, let them flower into the standard that is unique to your child.

I can say with honest forethought my life is good.  Where before I was in the position of victim, now I'm in the position of an individual I have choices, where before I had none.  There is great room for improvement.

as they say,
"The destination is the journey"

Thanks for listening,

Justa Guy

Neuro-diversity, the (a) Final Frontier...

I would argue that prejudice against the developmentally disabled is at once the most acceptable, and yet hidden  form of discrimination on a social level.

Many my age grew up in  what some refer to as the developmental disability  latchkey times.  

I myself would only find out in my 50s that the entire truth was kept from me, and filtered  and kept from my extended family.  My parents knew of my ACC, and yet did nothing about it (even considering little could be done in those days, it identifies a major congenital birth defect.  

This is how the latchkey thing works:  "(s)he seems to be ok, (s)he walks, (s)he talks, so we'll ignore it."  This advice even came from doctors, betraying there own ignorance of the implications of something like ACC or ASD.  While my parents tried to help when I was younger, by the time I was 12-13 (the "magic age" in ACC when everyone who has a Corpus Callosum begins to socially integrate and mature, and we are left in the dust.  Having talked to many adults with ACC (particularly those more "visibly" effected) I hear over and over again (as is true for myself) that we doubted our sanity, more than once in life, before we knew of our diagnoses.

I have always known that I was different, speaking for myself at least; it was glaringly obvious from a very early age.  My parents, they refused to speak about or acknowledge my difference, sans only with the responses of shame, blame and anger.

The four common ways seen in society today that reinforces this attitude, and even is used to find this form of bigotry acceptable are:

Stereotyping, Stigma, Psychological Discomfort, and Pity

One sees the example of stereotyping every time someone shouts at someone visual impaired, even trying to ambulate them, as if they couldn't use their arms and legs.  A common stereotype one sees is that all mental or developmentally disabled people are violent or dangerous, or that physically disabled people must be mentally disabled too.  Finally, there is the lovely treating the disabled as if they are children.

Stigma; a mark of disgrace associated with a particular circumstance, quality, or person. It is a long standing part of Judeo-Christian culture promotes the idea that deviance from physical or mental norms is linked with deviance from moral norms. The Bible begins with the tale of Cain's being physically "marked" as punishment for killing Abel, and continues with numerous other stories associating disability and disfigurement with sin.  One need only look into the tales of the Brother's Grimm, Shakespeare and modern film to see this over and over again.

Regarding psychological discomfort, studies show when individuals are asked to interview a person with an apparent disability, there are more restricted in their communication, express views less representative of their actual beliefs, and  they will terminate the interview sooner than when interviewing the same person when that person appeared to have no disability.  Also people maintain a larger "body distance" from the disabled (or seemingly disabled) person, while if performing the same task with an "abled" person much more up close.

Now to my biggest pet peave, paternalization & pity:

Often people will view those with disabilities as neither incompetent, evil, subhuman, unnerving nor repugnant.  Still, they harbor concepts about them that result in diminished opportunity or outright segregation.

These people believe that the world is simply too much of a struggle for persons with disabilities, and, therefore, that they should be protected from its chalenges. Paternalism enables the dominant elements of a society to express profound and sincere sympathy for the members of a minority group while at the same time keeping them in a position of social and economic subordination.

The outcry that accompanies prejudice against racial, ethnic and religious minorities is rarely exhibited in regards to prejudice against the disabled. This lack of response is a paternalistic notion that persons with disabilities, unlike other minorities, "deserve" to be treated unequally.

Canadian studies found that, although two-thirds of employers expressed willingness in principle to hire persons with developmental disabilities, at the conclusion of the survey only 26% of them would agree to receive job inquiries from such persons.

Often people who would outright deny and disability bigotry, nonetheless respond in a prejudiced and exclusionary manner in real life situations with a disabled person.

You may have noticed, for the most part I have been reflecting on the visibly disabled.  I would also argue that the bigotry affecting the disabled in some ways is more pernicious and hateful towards those with "invisible" or "hidden" disabilities.

Not only those with mental or developmental disabilities, but countless physically disabled also have invisible disabilities.

This bigotry and hatred of the disabled can take most ugly forms.  One has only to look in the "news" to see this.  Who comes to mind immediately is Alex Spourdalakis murdered by his mother, and then his memory exploited by Eugenics based groups such as "Autism Speaks."  (Autism Speaks, does not in any way represent the scientific study of Autism, it's causes, effects, etc, but is based on bogus bs and pseudoscientific claptrap.)

Alex Spourdalakis, alive and happy

The concept of "normal" in regards to neurology, well, it simply does not exist.  The lovely little color charts of human anatomy and physiology that you looked at in high school (or even college and graduate school) are average or "typical" of human anatomy, to be certain, but only typical.  Anyone who has  been exposed to gross anatomy can tell you that there is a huge variety and difference in organs of the body, including the brain.  We are all individuals, we are not carbon copies of "perfect human body" or broken carbon copies...no, we are not.

Even taking into account the variation in genetic materials (your genome is unique amongst all human beings) there is also the individuals phenotype.  Your phenotype is your own set of observable characteristics resulting from the interaction of your genotype (genetic material) with your environment/social construct.

The concepts "normal" and "abnormal" are moreso a social judgement than a scientific conclusion.  They are rooted in the history I've mentioned earlier.

In 1973 the (American) Rehabilitation Act became law; prohibiting discrimination in federal programs and services and all other programs or services receiving federal funds.On July 26th of 1990, 3 days before my 28th birthday. George Bush signed into law the Americans with Disability Act. Prior to these laws being established in the United States it was clearly legal to discriminate against me based on my disablity.  Prior to this time, I did not have the legal right to decide my own housing/employment/relationships/medical care.

I for one, have decided that I will no longer strive to be simply "tolerated."  I am a (unique) individual, with unique gifts, talents and deficits, not unlike any other human being alive today.  I will insist, for myself, and all other-abled individuals, that we be allowed our place in society, be given equal rights, equal respect, and equal dignity.

It is time for mankind to move beyond this bias towards the other-abled, in all our forms.  The other-abled, may be your brother, or sister, mother or dad, relative or friend, perhaps not today, perhaps tomorrow, but they (or you or I) will be.  Those that insist on pushing us out of their sight, their memory, their presence, will be in the most horrible shock of their lives, when they find themselves in my (and many other-abled's) position, because, they will, whether or not they wish to remain blind to that fact.

Anyhow, that's enough of my thoughts for ya'll to chew on today

May all beings be happy
May all beings be free
May all beings know Peace

~Joseph

Can you hear me now?

I love Don Adams! :)

Sometimes it can be so difficult feeling that my needs are being addressed & heard; knowing that others just are not getting it. They aren't understanding what I'm saying.  

But   I do not necessarily put the onus on anyone other than myself.  You see, I have this internal disconnect, that was seen upon examination, between volition and action, or the the will to act in a certain way, and the execution of that intention. 

Think of it as A.D.H.D. but on steroids. On a given day I have so many intentions, and so few actually ever get carried out, sans some very basic and rote habits.

I'll want to talk to you about apples, but I say to you I want to talk about avocados.  Often I'll appear to say or do the exact opposite of what it is I'm trying to communicate.  I'll intend to go right, and I'll turn left.

I've spent years now getting neurological, medical and psychiatric support and while the skills I've gained have invaulably lifted my quality of life....none the less this will continue to be how the brain in this meat-puppet works.  While I have no doubt that I can can continue to have improvements I have to also be focused on working with myself exactly as I show up, and not some ideal picture in my head.  The "meat & potatoes" as the saying goes, the practical day to do function....I'm soon to be 52 and there isn't likely to be some magnanimous change...I feel like I should just "settle in" and continue to grow more comfortable with myself as I show up, and learn how to best utilize "me" in the world. 

I was born in '62, so I remember first run episodes of Get Smart with Don Adams...a comedy genius.  Pictured here to the right is the "Cone of Silence", supposedly to create secure conversations that no one around could hear, thing is, they could never hear each other either.  I feel like Maxwell Smart in the cone of silence!

I'm blessed to have known someone in life who "got me" and wholeheartedly and unconditionally embraced me and supported my growth and development, and amongst all my self acceptance.  If you have this gift in life, do not squander it, for you do not know how long it will remain so.  No cone of silence needed, in fact often we understood what the other wanted entirely without words.  Freaky for someone like me who has difficulty with the non-verbal stuff.

I'm afraid that such will never be my average or "normal" daily life again.

I am blessed to know others born with ACC though, and that makes a difference.  Folks with ACC fall along a spectrum of experience, yet we all share common traits that can easily be seen by each other.  For example, I have an ACC friend, Sara Oliver... younger than I, who has three children, one himself, special needs.  To be certain she has many ACC related traits and issues, yet she manages to do something I could never imagine possible; raising children.

I find it difficult enough to "raise myself," let alone three children.   On top of that, my friend lives with epilepsy and hydrocephalus that needs regular medical intervention.

To be sure, she hears me.

I've learned a lot from her though...Many with autism have a "quick to be self-defeatest attitude, and I am no exception to this.  This is the antithesis of my friend though.  She embodies the lifestyle of my friend, spiritual sister and mentor Troya, who said "I'm not strong because I want to be, I'm strong because I have to be."

I admit, I really don't fully "get" this, but I'm learning.  I've been so conditioned to accept complete dependence, even upon situations, so that if something is not to my liking, I'm immediately slipping into the role of victim.  Less so, today, thank God.  She's been a good example for me.

My point it, and I'm speaking to other adults with ACC: wherever you fall along our ACC spectrum reach out to others like yourself. Speaking of myself, I can learn from anybody.  There is nobody "greater" or "lesser" than I, we all have talents, skills, deficits and the like.  Observe and see how your fellow ACCer does something, and you might find a new way to do it yourself.

Until later in life, the only way I knew how to speak up, was in panic, aggression, fear...but I'm beginning to understand assertiveness.  Beginning to embrace self-love and care.  If I am not there to parent myself, then no one is.  I still find it difficult, I hate confrontation, and discord, so I'd rather live in a spirit of avoidance, or at least I have for a majority of my life.  My ACC friend proves to be a positive example in this regard too.  She also embodies the old "F*ck them, if they can't take a joke..." i.e., not apologizing for who we are.

Can you hear me now?

Breathtaking

It's my dream to go to Christchurch New Zealand with my telescope to view the Milky Way!

Ability, Dis-ability, Other-ability and Balance...

Finding the balance between independence and interdependence at 51 years old is just as, if not more complicated than it was at 5 years old.

Unlike typical children, at the age of "maturity" or 18, I was still very much like a 10 year old child (still am in many ways.)  After all, it is said of ACC to "expect their teens throughout there twenties."

When I speak about balance, I speak more of a homeostasis or a dynamic balance.  I (personally) don't believe there will ever come a time where I (or anyone else) will find "balance" and never experience imbalance again.  This may be an ultimate fantasy that I (and others) strive for, but it doesn't exist.

Having said that, my life has been a constant struggle to express my individuality, while still needing support for the simplest of things (in life, that are easy for neurotypicals.)  I have spent quite a bit of time over the years in my blog advocating the concept of "Other-abled" and I still believe it valid, but even us non typicals (in my opinion) should not use this as an excuse to ignore our real needs.

After the death of my best friend and soul sister Troya, I find this to be "on the front burner" with me all the time.  She taught me, and showed me what metal I was made of.  I watched her, while she was in remission take care of me while I was on my chemo/immunotherapy, and her strength changed my life.  She was often wont to say "I am not strong because I want to be, I am strong because I have to be!"  Troya had a focus of Will(power) that as yet I've not fully grasped in myself.  Yet her example gave me a pattern to imitate.

I think others are often confused about this issue as well, especially when dealing with disabled/other-abled folk.  People judge by their own standards, looking out of their own eyes, having walked in their own shoes, but rarely (can) take the perspective of the other.  Especially when dealing with developmental and/or mental disabilities there seems to be a constant prejudice that "If I cannot see it, it isn't real."

Many disabilities are "invisible" disabilities, in that you are not walking with me, day in and day out, unless you were "in my head" you'd never really be able to understand what it is I live with and cope with on a daily basis.

I don't (necessarily) judge people for this either, it is almost innate in the human experience to experience the world according to our own past experiences.  The brain craves (firstly) to put new experience on a scale and reference with our past experience.  Only when it is convinced it has never experienced it before will the brain take it in "unbiased" and unaltered.

Many on the Autism Spectrum, as well as many with ACC often are constantly judging our own behavior, over-thinking our every response and communication, because we already know that we are not neurotypical,  we end up judging ourselves and our communications over harshly and with bias.  Sometimes we need to do this, but often it just gets in the way and creates more problems.

ACC while known about for a very long time has only really received clinical attention in the past few decades.  Even so, we know more about it now that we have ever before.  This knowledge can give individuals like me and you (the ACC reader) more hope, more possiblities than ever before.  

Yet where I continue to struggle is the balance between evoking my talents, skills, strengths, and abilities, and recognizing where I fall short, where I need help to function in typical daily life and society.  This is not always easy (it really never is) , because it is so difficult for me to recognize where I'm needing help, I often need the mirror of others and experience to tell me this; and to be able to relate this to those that can help.

I can relate my experiences better in writing than in speech, even though I actually have a very high verbal IQ.  I can know something inside and out, but when asked (on the spot) to relate it, I often have difficulty putting it into words.  This has changed a little, for the better, in recent years, but it will never "be cured."  It is the way of my neurology and personality.

It really is a lifelong struggle, journey, whatever to come to some sort of a balance...being able to ask for help when I need it, and yet being independent and even encouraging independence.

Some would say, "but yeah, look at you, you've been intelligent enough in life and resourceful enough to put out the firestorms in your life" etc...but that's just it, I crave a simple life, challenged in a good way, yet stable and secure in another.  ACC can cause someone to appear wildly inconsistent, and I've never hid the fact that I am no different! 

I am fully aware that even your average/typical human being experiences problems with self-esteem and such, but throw on top of that this disability, and the fact I'm not always aware that I need the help that I need then life as I live it is constantly frustrating.  Human beings are always on this kick of bettering themselves, and that's fine, I'm copacetic with it, but learning to accept myself for who and what I am (or appear to be, at any rate) is turning out to be a lifelong project.

To be certain, I'm farther along that path today, but it has not always been so, even until my recent history.

Having said all of the above, I remain an advocate for the concept of being "other-abled."  In truth, it could describe anybody and everybody.  We all show up in this world with different skills, abilities and the like, we are all unique and uniquely suited to fulfill a role in life that can be acted out by no one else.  I believe in a society where this type of thinking should be encouraged, and acted upon.

~j

The Web in the Head

One of my ACC symptoms I refer to as the "web in my head."  The spider, is my imagination, my thought stream, 3D holographic images, "real-time."  Such is a great when one needs to call upon creativity, spontaneity, and intuition, this is certain. Where the "rub" comes is that this is a dominant feature of my thinking process.  So much so that it can interfere with logic, and "reality" (the world according to everyone else.)  It is free association, gone a muck. 

The average or "typical" person may even have this kind of access, yet largely this is guided and held together in the larger frame of rational, every day to day "meat and potatoes" functioning.  My thinking process surrenders and sacrifices executive function, planning, organization and regulation skills and puts all it's energy into this web of thought.  The constant dialogue of the subconscious, with whom the typical person is only vaguely aware, but for me it does not shut off, but in my sleep.

I was about 7 years old when I realized that mine was not the mental process of typical people.  My peers in school had already begun to cognitively separate "the world out there" from there imagination, but I had not.  In fact not only had that begun but that my imaginative process only continued to become stronger and more dominant.  In 3rd grade I was laughed at and mocked by fellow students because I still believed a fantasy about space ships and aliens, which for me were just as real as the classroom we all shared.

I think I was about 15 years old when I began to comprehend that the world of my imagination did not (always) represent "reality" "out there." The famous Autistic author Temple Grandin refers to this as "her life in pictures."  My thoughts are primarily represented in very strong, vivid internal imagery, and often this imagery overlays what I am seeing, hearing, communicating.  This has led some to wonder if we were "on the same page" many, many times in my life.

I've often tried to estimate and describe to others what this is like.  One analogy I return to again and again is this: "my 24 hour day of thoughts is equal to your entire week...", over thinking in the extreme.

 I get exhausted so quickly with social contact, as the studies have shown I don't pick up facial expressions and subtle body language, unless they are overt and obvious,  I demonstrate an audio processing error as well.  

While all of this is clinically observed, it is difficult to discover which is the chicken and which the egg.  Phenotypically ACC can effect a person in so many different ways, are the autistic type features of ACC primary or secondary.  I've gotten to the point where that doesn't so much matter to me.  Getting occupational therapy, and DBT and other helfpul tools to work with it as it is, is so much more important than "understanding" it.

While I do rather well expressing thought in writing or monologue I seem to fall short in dialogue.  The entire reflexive process of communication, the "back and forth" of it doesn't operate with me like it does in neuro-typicals.  While I have a higher than average intelligence, and retention of long term information, I lack in the areas of short term memory transfer/working memory that is necessary for communications and higher logic, the "swap memory" that enables the brain to multi-task. (We do not/cannot truly multi-task, but the typical brain itself excels in it.)

ACC often shows up in confabulation, conflation, and correlation of thoughts, images and ideas that the brain creates in order to cope with failed memory encoding and retrieval.  I'm often, if not entirely unaware that this is occurring until it is pointed out to me by individuals or situations that my thinking is not in line with the evidence around me, what others see/think/experience of a situation.  The story in my head and the "solid world" mix, they don't collide.  

I do not and never have "heard voices" or "seen things..." or any of that sort, but the subconscious, internal, free-associative dialogue in my head is never silent, excepting deep meditation or sleep.  Most of you have some awareness of your mind's dialogue, but have never, could never experience it as I do.  Largely it is as if I have no subconscious, or at least not a singular "separately operating" one.  Real-time and memorex are always blending together...which results in easy quick exhaustion.

In my last neuro-psychiatric evaluation it was found I had rather good cognitive skills when tested in a controlled "steady" environment.  However it was also seen that as they put the pressure on, increased the difficulty and speed of task, my executive function flew out the window, and my ability to "follow' quickly breaks down.  It's like my four speed transmission only goes into first and second gear.

I know there are a lot of people out there the push aside the possibility of using medications to lessen symptoms, and I'll respect their opinions, but I'm pretty set in how I feel about this.  The chief of psychiatry and my neurologist have me on low dose Respiridone, an atypical anti-psychotic prescribed sometimes for ASD and ACC folk with varying results.  For me, the results are immediate and profound.  The "web" spinning out of control, happens much much less, I tend to obsess less on the confabulations, and it is easier for me to connect with people "in the world out there."  I've tried several times to go off of it considering that perhaps my cognitive skills would help me cope and think differently, but to no avail.

Sleep is problematic for many, if not most with ACC as well as those with ASD.  In ACC, we have trouble with any of the regulatory functions of the body/mind.  When the average person sleeps they go through several sleep cycles throughout the night.  After REM typical individuals "surface" to a very light sleep state, almost awake, and then go through the next sleep cycle...

I'm different...
Without medication I can easily wake up (fully and completely) after one or two sleep cycles...and this isn't a slow waking up, this is "all the lights are on, and the stereo is blasting."  Whatever first conscious thoughts are in my mind I will tend to obsess on them rapidly, not able to shut them down, and I'll become not only wide awake but particularly anxious and disturbed.  It is at this time (with the meds) that the web in the head spins out, full blast.  So, just imagine you go to bed at 10pm and your eyes open wide at 1am, your mind fully engaged in thought about something (could be anything, something simple to something complex and worrisome...) This is what I cope with on a daily basis.

 I am always caught up in a story, if not sleeping or in deep meditation, that story so visual, so innate and natural that it can blind, confuse and distort "the world out there."  Also when the spider mind is spinning this web, I completely forfeit my ability to comprehend Theory of Mind.  In short TOM looks like "I have these thoughts, thoughts are things, I can listen to, or ignore them, and the same is true of other people."  This is an a priori accepted "fact" for most neurotypicals, not for me.  Even amongst NTs one sees strengths and weaknesses in TOM, but nonetheless on some level it is still present.  For those periods of time where it does not exist for me, I become victim of my own thoughts and imaginations.

For me personally, this is one of those features of ACC and ASD that has frustrated me my entire life, drowning in the ocean of my imagination. I have spent a better part of my life perfecting DBT skills and meditation, they both help immensely, but do not "cure" or "solve" this issue.  Primarily my task becomes and remains one of self-acceptance and the rejection of a victim mentality.  When the MRI came back, and the medical doctors, neuro-psychologists and psychiatrists all came back with and diagnosed me with ACC (first) and ASD, I no longer felt like I was the out of control victim.  In fact, I was never out of control, I was living out exactly who and what I was born (in this body) to be, and that I need not be like, behave like, think like other peoples, and that my success will not look like any other's successes or failures.

“Everybody is a genius.

But if you judge a fish by its ability to climb a tree,

it will live its whole life believing that it is stupid.”

― Albert Einstein

I know there are some ACC folk out there that clearly understand the confabulation I am referring to, and the web of mind, etc...and for many of us we thought of it as our "dirty little secret" too ashamed to, or simply unable to describe it to others, as many of us didn't understand until we were diagnosed, at adulthood...I'll say to you though that you are unique, and perfect as you are.  Doesn't mean that life will not be any more or less difficult than other folks, but accepting who you (I,we) are will go a long way (perhaps the longest way) in healing what can be healed...the harsh self judgement, even hatred, the frustration and anger...these things can and do resolve if we start with the base of self-acceptance.

~PeaceOut,
Justa Guy

Lions and Tigers and Bears Oh MY (Obsessions, Anxiety and Fear)

Part of living (arguably a very large part) with both ACC and ASD is lifelong anxiety, fear and fixation/obsession.  I've recently had an enormous amount of change in my life, and I'm grateful to have had people that care, people that without who's help I would not have been able to move forward.  

But the moving forward for me is racked with anxiety, pain, fear, fixation on "what ifs" et al...

Those of us on the Spectrum have lifelong strained relationships with those we love and love us, and there really is no way around it.  From the outside people try hard to understand, but it really is not possible, as it's not possible for me to fully understand them either.

I recently moved out of where I was living for the past 6 years.  It was the first "home" that I'd lived in, in many, many years.  Not to mention, my best friend Troya, perhaps the only person I'd ever known who understood me completely lost her battle with ovarian cancer.  I doubt I'll ever find another person who will fully be able to "grock" me the way she did.

I am currently so torn up inside, I feel as though I have been passed through my paper shredder, then burned to ash, then trampled under foot.  While cognitive skills for the most part "work" for neuro-typical folks, there is no short circuiting these things with us, for the most part they have to play out.  The unfortunate thing is that those that love us get caught in the "crossfire" and can feel also hurt and tread upon, caught up in our anxieties, etc...  ACC and ASD folk, we are used to loosing loved ones and friends, perhaps not used to  it, but accepting of it, because it happens all our lives.  I'm just blessed to have a few folks in my life that try the damnedest to look beyond my weirdness and see my heart for who I am.

When someone with ACC begins to obsess on something, and we are told "don't obsess on "____", all

we hear is "obsess on ______."  If I had the ability to shut off the rat wheel in my head I would.  I'm even rather accomplished in meditation, I can "go where many have never gone before" etc...but when I get caught in these loops, they must play out, and my meditation must become allowing it and trying to control the damage it causes.  It rips me up inside, because I see it hurt those around me.

We also, in this state will tend to lash out and everyone and anyone, and it is not personal.  I can understand why people take it personal, believe me, I really can, but it is never personal.  In this state it feels like I've been put on the rack and I'm being pulled apart and I'm fighting for my life, but only I can see this.  

When I moved to my new place I had no phone nor music nor TV nor sound nor anything for a week, and that silence alone was literally amping my anxiety through the roof.  I'm still dealing with it, only now I have internet and telephone. 

As for the fear I go through, imagine the thought "I'm dying" (I mean yes, we all are, all the time, but,) and amplify this hundred fold.  Imagine, anxiety on a scale from 1-10, mine being a 25.  This is what I have to cope with at any given moment.  Someone telling me to just "bully up" and "take it like a man" only make this problem worse, because it drives it down my throat as guilt and shame of not being able to do so...

I'm sorry, I know this post is a bit more rambling than most of mine, but this is how I'm feeling today, just like this little rat in the picture above, and I have yet to get any rest.  I hope to produce some more productive material in the near future so please do check back soon. 

Thank you for listening...

Joseph

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

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.

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

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