Friday, January 23, 2015

"You're just not trying *hard* enough..."

I know that several parents of teenagers are anxious about "how their kids will turn out" and one of the subject I hear most often is questions about employment.  This is difficult for me to talk about, a very loaded subject.  My own parents used the phrase "you're just not trying hard enough" on me so often, not unlike a verbal baseball bat...which I proceeded to take from them and continue beating myself for many years.  Thank God when I was diagnosed with ACC and began to understand whyI had so much difficulty in this area, I have been able to begin the process of healing.

In my own personal experience, and in my chats with other adults with ACC there is observed a pattern.  Many of us are capable of learning vocational tasks, other tasks, scoring highly on them in a controlled situation, but when asked to perform the task unsupervised in the "real-world" we fall short of our demonstrated ability.  This was/is especially true of me.

Fresh out of high school, I decided that I wanted to attend EMT school.  The classes were for 4 hours on a Saturday morning and afternoon, 12 weeks total.  I scored very highly in this training, and I remember being very proud of it.  Yet, I only had one EMT job, lasting all but a few weeks.  This pattern has continued throughout my life.  During my interview with Dr Lynn Paul, I was asked "why did I think that was?"  As I am not the doctor I can only guess, but in my experience it seems that I lacked the organizational skills to perform the needed tasks at hand.

I remember, very early on in my experience of trying to work, that no matter what I did, what kind of work I performed, my mind was "off somewhere else" not wanting to attend to the task at hand.  If the job was 9am-5pm by 10am I was already thinking about what I needed/wanted to do once I got out of there, and all I could think about  was getting out of the task.  I have always had an obsession with "not having enough time."  I can't tell you having enough time for what, just that "I don't have enough time."

Even though I trained as an EMT, immediately on the job I found I could not manage the many tasks needed to be done without constant prompting.   Unfortunately, such prompting is not available in most adult work tasks.  I went from job to job to job for a couple of decades...beating myself up with the thought "I'm just not trying hard enough."  Being told I was "lazy" and "didn't care enough" and "not applying myself" (still don't even know what that last one means.   Thing is, even today, if I am not prompted, I just kind of wander around in my mind and thoughts.

I also have great difficulty switching tasks.  What I mean is this.  I was told "you need to get this done" so I would apply myself to it and work to finish it.  Then a contingency or change would happen, I would be expected to put aside the task I was doing and begin the new task, going back to the old one later.  This is really difficult for me.  Kinda like a freight train jumping tracks is how I experience this, but without the track switches, I'm just supposed to sort of "jump over here now and do this."  So, while on the one hand I need great concentration to stay on track, I am very resistant to switching tracks.  This is not a "willful" resistance, not "no damn it, I'm not going to do it!", I would rather describe it as a confusion, a frustration.

Before I was put on SSDI, I had several dozen job attempts...sort of does away with "not trying hard enough", don't you think?  Even after I was put on SSDI and didn't understand my ACC I spent years just trying to find "the right job", that magic bullet that would allow me to be "just like everybody else."  I caused myself so much unnecessary pain and suffering doing this.  And then I had to deal with Vocational Rehabilitation.  This was an awful experience.  They never were concerned with finding me a job with the right fit, what I could and couldn't do, what I could stick with, they were concerned with their numbers and results.  By the age of 40, some 15 years (I'm guessing) after I got on SSDI I used up all my "trial work hours."  It would be impossible for me to try and go "back" to work now, as I would loose major benefits.

I want to stress, I want you to all know how incredibly painful this experience, this subject is for me.  Even now at 52, diagnosed with ACC, supposedly "knowing better" I still have my father's voice in my head beckoning "why can't you just be 'normal' like everybody else?"  "Normal" is something, I'm afraid (rhetorically) I will never be.  Yet neurotically, I will often still pretend and behave like such a thing exists.

After decades of failed job attempts, I think the longest I ever kept a (part time) job was 6 months, my self-esteem has suffered incredible blows.  I know better but I still judge myself about what I can't do.

After being diagnosed with ACC, I have worked hard, but in a different way.  I'm learning to be ok with who I am, with what I cannot do.  And (I know, don't start a sentence with "and" surprise of surprises the more I accept my limitations, the more the gifts  I do possess come to the forefront.  The most obvious example is this blog.  It is the single-most coherent and consistent effort of mine to do anything, that I have ever accomplished in my life.

I know that I am just one person with ACC.  And, if you've seen one person with ACC, you've seen one person with ACC, but it is my hope that the sharing of my experience can open up my world to others, to parents with ACC children and adolescents, and other adults with the disorder.  I "think" I'm doing a good job at this.

I'd like to say that I'm convinced had this disorder been recognized (and understood) as it is today when I was younger that proper intervention may have provided me a different outcome.  I know many ACC adults that struggle with work, but many of them do much better than I ever did.  This is why I am stressing "I am just one person with ACC."  I just hope that those that are like me don't have to go through the self flagellation and deprecation that I unnecessarily put myself through for far too many years.

In many ways I remain emotionally immature.  I feel exactly as I did as young teenager running around the halls of junior high school (like I was ten years old.)  I don't quite have the same grip on "real world responsibilities" that others do, that even some ACCers accomplish.  I remain bitter, when I hear and see of other ACCers who are accomplished in the work world.  I know I shouldn't be, that I should be happy for them, grateful that they succeeded where I only fail, yet I am still reminded every day when I wake up that I don't have "purpose" in the world as other people do...and it makes me incredibly sad.

Again, having this blog has helped me...and apparently helps others, so it makes me happy.  Yet I even judge myself saying/thinking "the blog could be better, it's childish, repetitive" etc...I'm so used to the Protestant Work Ethic that was jammed down my throat growing up that I still judge myself by that ruler.  My parents thought and taught that the solution for every problem was simply "work harder."  I admit, that both of my parents worked very hard, were driven in fact, to provide for us, we never lacked material necessities.

I honestly can not understand them, my mother successfully kept the same job for (I'm guessing) twenty years, as had my father, lived in the same house, same phone number, same everything for as long as I can remember.  This is not my experience of the world.  I've had very little stability in my life, the only real stability occurring in the past 10-15 years.  To use the AA expression, all of my life I continued "pulling a geographic."  I convinced myself that if I moved to yet another city, another state, other people that my problems would not follow me.  Well, we both know how that turned out...

I'm sure there are other aspects of working and keeping a job (trying to) that I could write about.  Other ACCers seem to be more successful at it than I, perhaps ask them.  If there are other aspects that I haven't covered that you think I can, either leave me a comment here or on one of the ACC support groups, and I'll answer if I can.

Thank you for spending time looking into my mind...


Thursday, January 22, 2015

AUTcast & ACCused

AUTcast and ACCused
Separate and distinct,
Generalized and penalized
The labels are succinct.
I wonder with the thunder of never ending thought:
Do you see me?  Can you be me?
Painful and distraught?
I am so much more, than what you hear or see
I beckon and implore from your judgement set me free.
Care to know, care to go
Where few have gone before?
I will show you what I can do-
On highest wing I soar
I am alone myself of kind
As you alone are too
Find the one who known by just you
To thine own self be true
Can you be me, can you see me?
I say that you cannot,
Each and every one is special
To know this, each one ought
Many flowers in the garden
A beauteous array
Hearts hardened loveliness decreases
If you take just one away
Working labels are just fables
Fictions causing strife;
See each one as they are able
An expression of God's life

Wednesday, January 21, 2015

Lab Rat for the Greater Good...

There is important research going on surrounding Agenesis of the Corpus Callosum and I have  just finished a three day study with Drs Warren Brown and Lynn Paul Kerling.  I want to reach out and thank them especially, as well as Ryan Mangum (the research assistant I got to know the most) and the other fine ladies and gentlemen that administered the testing and made my time there most enlightening, most fulfilling.

I apologize for not remembering all of your names, but I have difficulty with names, but you are all equally important.

First, I would like to start off on a purely personal note, then I'll talk more about the research...:

I'm 52 years old, and I spent the greater portion of my life not knowing I had Agenesis of the Corpus Callosum.  Yet I always knew I was different, the way I thought, felt, and communicated unlike those around me.

Not knowing this was because of my ACC I lead a life of dysfunction, self-blame and hatred.  My parents accusing me of "faking it" and "lying", telling me there is "nothing wrong with me" "I fabricated it all in my head." (Fabricated a hole in my head, that is a good one SMDH.)

When I was diagnosed it was like a light turned on inside of me.  All the misplaced hate, rage, misunderstanding, anxiety, all began crumbling down, melting like an iceberg in the sun of knowledge.

Today, I still deal with people that tell me "it's all in my head" sadly these people are "doctors."  Doctors who tell parents either "(s)he didn't need that 'little bit of tissue' in the brain" "it's of no consequence" or "your child will grow up to be profoundly intellectually disabled, will never walk, never talk."  These doctors are ignorant uneducated fools, harming patients by there uneducated and misguided pronouncements.

Dr Warren Brown
Hence where this research comes in...

The research piloted by Dr Warren Brown director of the Travis Research Institute is designed around demonstrating the core cognitive and psychosocial deficits common to all individuals born without the corpus callosum.

Dr Brown is assisted by Dr Lynn K. Paul. 

Dr Lynn K. Paul
Dr. Paul is heading the Caltech Corpus Callosum Research Program and an inter-institutional research consortium on AgCC. The purpose of the Caltech AgCC Project is to "characterize the neuroanatomy, effective connectivity, cortical organization, emotional responsiveness and social cognition in adults with Primary ACC."

From the moment I met these two fine doctors I was impressed with their passion and commitment to uncover the secrets of agenesis of the corpus callosum.

On a purely personal level, this experience has at once been both cathartic and healing, both bringing up and simultaneously healing old wounds.  Finally having exacting recognition that what was "going on in my head wasn't 'all in my head' " has helped me bring closure to the denial and gaslighting, the shame and disgust heaped on me by my own flesh and blood.  One literally cannot "invent" a hole in his head, missing the largest single brain structure, responsible for so much in the neurotypical brain.

This, however, is not the primary reason I participated in the study; rather I wanted to participate because I knew how meaningful, how important this research is, and that perhaps a generation down the line it will permanently alter the lives of those born with this disorder for the better.  ACC, as with autism, in my observation of parents with children and adult with ACC is that early intervention is key to a positive outcome.  This research is tuned to not just present that there is a "problem" with not having a corpus callosum, but what exactly the deficits are.  Only knowing where the exact cognitive and socio-emotional-social issues are can we hope to improve the outcomes for people like myself.

I want to be careful and not talk too much about study specifics, as I agreed with Mr. Mangum I would not.  To do so would be to invalidate and leave the study open to irregularities for the participants in the future.

I arrived at the facilities on a Friday, we did some initial testing, then I had lunch with Dr. Paul. I was taken to the California Institute of Technology to have my "hydrogen atoms flipped."  By this, of course, I am talking about spending time in an MRI (Magnetic Resonance Imaging) machine.  I have tattoos on my body, and apparently this particular MRIs radio frequency was so strong that they were concerned of "cooking" my tattoos. (As they are unsure of the inks, some of which absorb the radio waves and can heat up.)  So, I spent the better part of an afternoon with ice packs in contact with my ink inside of an MRI scanner....WHAT an experience! LOL

They were able to get all of the various scans they needed of my brain and ACC.  Who could have imagined that being scanned was so exhausting! (but no cooked tattoos, thank God!)

The remainder of the weekend was spent taking various and sundry cognitive, memory, social and emotional based many I lost count.

For most of the testing, it would be improper for the researchers to go into any details as to the meaning and results of the examinations, and I went in to this understanding that. That being said, there were times that it was acutely obvious to me that I had problems performing certain tasks.  In one sense, to be honest this was excruciating.  It was confrontational to the "Nth" degree.  I do not mean the research assistants were confrontational, but that my "deficits were right in my face."  This was pretty painful for me.  I have spent my life in denial of my shortcomings, because I was constantly bombarded by those telling me they were fabricated, so for my own sanity I had to deny them.  But here I was, voluntarily an open book for the researchers with everything hanging out.  This has been both the single most painful yet liberating experience of my life. 

I feel that I finally have closure.  I no longer wonder that "maybe I'm just not trying hard enough" or that I am immoral or evil as my "parents" would have me believe.  I can now put that to rest forever.  They refuse science, they refuse any attempt at reconciliation, and it is truly their loss.  I feel terribly (for them) but will no longer let it rule my life, leading me around on a leash of misplaced shame and guilt.

Knowing that I can never have the reconciliation with my family that I desire, I have great peace, knowing that this research will change the lives of ACCers in the future.  Knowing that in my small part, I am making a difference.

On that note, I want to stress that you can make a difference too.  The NODCC, the National Organization of Disorders of the Corpus Callosum, founded by Dr Paul and Barbara Fonseca is an organization created to support these types of research, and to support and educate families affected by ACC is in need of your help.  The truth is, ACC is such a rare disorder affecting between 1 in 10,000 to 1 in 4,000 individuals.  We've not had the same exposure as has other rare disorders (yet), but I'm confident our time will come.

Dr Brown and the research team was kind enough to take me to dinner, to thank me for my participation in the study.  But really, I want to thank them.  Having participated, I now understand in more detail how important this work is for the future.  Participating in it has been a high point in my life.  I was treated with great deference, with respect, kindness and importance for my contributions to this study, and I am truly grateful to all who were there as part of it.

Truth be told, the weekend was perhaps one of the most mentally and emotionally exhausting and challenging things I have ever done...but I would do it again in a heartbeat, without any hesitation.

The research team and I discussed subjects I could write about on my blog, things that many parents have asked about but I have not yet covered.  I have a lot more material to write about, so please be sure to visit my blog soon in the future, and let others know about it.

Thank you everyone for your unwavering support,


Monday, January 12, 2015

Disability and Poverty...the American Way...

According to recent statistics 1 in 4, or 28% of those aged 18-64 years of age living with a disability live below the poverty rate.  I am one of those myself.  The poverty rate in the United States is considered any individual earning under $11,139 per year, which basically describes all of the disabled in the united states living on SSD and SSDI.  Those of us considered disabled are not allowed to earn over $700 a month in order to receive SSDI, cannot ever save over $2000 in savings, in short,  everyone with a disability in the United States who receives SSI is legally obliged to be poor.

Even as today, there is a new law passed that allows parents of disabled children under 18 to put roughly over $100 thousand into a savings plan, this money can only ever be used for medical expenses and disability related expenses.  

This income disparity between the abled and other-abled/dis-abled can hardly be what the founding fathers of this country had in mind.  A lower socio-economic status is linked directly to lower education, poverty and poor health, ultimately affect our society as a whole. Inequities in wealth distribution, resource distribution and quality of life are increasing in the United States exponentially.

Specifically, I am thinking about all the many children who becoming adolescent age out of the "system", those with developmental disabilities such as ACC and ASD.  Many of us end up homeless, hospitalized, on the fringes of society, even in prisons that are largely being used as "storehouses" for the intellectually and developmentally disabled populations of this "great" county of ours.

I question, where is the opportunity so often spoken of as available in our country to lift one's self up and succeed?  I would argue it largely does not exist for us.

I myself grew up in an upper middle class family.  Both parents worked (hard), and I never lacked for anything (monetarily or physically) in my years of maturation.  Yet, in a family that was sorely prepared or willing to deal with my disability for the first, say, 20 year of my adolescence  I did the equivalent of couch hopping in order to survive, depending on the kindness of friends and strangers, till they themselves no longer could cope with my (as yet) undiagnosed disabilities.

I left home young, then came back home, ultimately by 26 I was shunned by my family, told to be "family at a distance" and then completely estranged from them.  I can honestly say, that since then, till the present time at age 52 I have lived well below the poverty line.

Prior to diagnoses I tried to work.  After all, my father would constantly pound in my head his good ol' "Judeo-Christian 'work ethic' " of "just try harder, you have to work harder and that is the solution to all your problems."  By the time I was put on SSDI I had many dozens of job attempts, so was it really that I was not "trying hard enough"?  I say not.  I have never kept a full time job at all, not for more than a couple of weeks anyhow, and the longest I ever kept a part time job was 6 months, but this wasn't for lack of trying.  It is because of my disability.

Prior to diagnoses of ACC I had no way of understanding why I could not navigate complex social situations.  I also had no concept as to why the organization and management of my life (let alone "work") was nearly impossible for me.  Those with ACC can often have great difficulty with executive function.  We can, in a controlled environment test very highly in our abilities, but given the task to perform these same in a "real life" situation we find ourselves unable to perform at all.

While I can't speak for everyone with ACC, I can describe my own experience living with this lifelong disability...I can tell you that one can get to a point where one questions one's ability, sincerity, one's sanity and worth in society as a whole, when forced to fit our "round peg" into the square hole that society provides for us and demands we fill.

Since diagnoses, as I have mentioned many times before, my life has changed radically for the better. Of this there is no doubt.  Insofar as self-acceptance, and encouragement and embracing the many gifts and skills I do possess my "old life" is but a shadow of who and where I am today.

Having said that, I, as a 52 year old man, am left with very little options to function and fit into the "real world."  The so-called "jobs programs" available, have never been focused on long term successes, rather in their own numbers and figures.  Even going through "vocational rehabilitation" I have constantly run into unfunded and under educated "help" only interested in forcing my round peg into their square hole, long enough for them to increase their funding.
arrow pointing to the missing corpus callosum

It does not help that ACC is so little recognized and understood.  I've run into problem in my own state of California, trying to access services for the developmentally disabled where they will tell me "ACC is not a 'legally recognized' disability" and therefor I am not able to access needed services.  You tell me, if having a hole in your brain, is not a disability, then what is?

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually." (from the works of Dr. Lynn Paul Kerling)

HOW is this not a disability?  I still constantly run into ignorant doctors, therapists, and workers that want to shuffle me off because they do not understand.  I was actually told by a worker at the California Regional Center when applying for benefits that because I had ACC I wasn't ASD but rather schizoaffective, which I might add has been struck down dozens of times by multiple doctors as being inaccurate and untrue.  Because ACC is a neuro-anatomical structural defect, it is not included in the DSM, which strictly speaking is an insurance billing manual for the American Psychiatric Association.  WHERE does it leave us with ACC?

I myself, have reconciled with the fact that I will always be poor, and the poor are always shuffled off to the margins of society.  This does not mean that I will not continue to fight for the rights of others, that I will not continue to try and make a change for the future generations.

It is my hope that when my book comes out, I will be able to help make that difference.  One in four thousand of us are born with a disorder of the Corpus Callosum.  Again, I would argue that would make it the second most common disorder (next to ASD) affecting people today, rare, but not for those who have it.

As I'd mentioned last week, I will soon be participating in the Corpus Callosum Research Program study of Dr Paul.  While I'll have the added benefit of some personal enlightenment, this research will likely have untold benefits on future generations that I will never know about, and I'm fine with that.  Yet, I will never stop working to educate the public about ACC and its effects on an individual.

In the meanwhile, my heart breaks for all of those (us) that continue to live poor and unnoticed, unhelped, on the margins of society.  We will never be a "free land of opportunity" until that opportunity is equally available to all its citizens, as it certainly is not at the current time.

Wednesday, January 7, 2015

Penny in the air..........Penny drops...

I was very young when I realized I wasn't like everybody else.  I remember being mocked and made fun of, as early as second grade.  With ACC childhood (and sometimes adult) confabulation is a given.  Confabulation is common with all young children, but as the NT child socially and emotionally matures they begin to differentiate between fantasy and reality, whereas with ACCers confabulation at this time can be even more pronounced.

For me, it was second grade when the penny dropped.  I had magical visions of extra-terrestrials that would come to my beck and call when I activated my "magic belt" (it was a magnetic clasp belt, so to me it was magic.)  I remember the children telling my teacher, Ms. Youngquist how "stupid" I was, that I was telling them "faery tails."  To me though, they weren't...they were the world inside my head, which was just as real as the world outside of it.  I remembering the other children jeering and making fun of me, and I could not understand why.  This was my first inkling that I was different.

This sort of thing went on, all the way through high school age.  What I can't for the life of me understand (today, as an adult) is how this was not recognized for what it was.  (For me) it wasn't until I was in my early thirties that I had a grasp on the difference between fantasy and reality, and even sometimes today it still slips by me.

I have a multi-coloured multi-textured imagination, I always have.  I would go away from watching television shows, I particularly remember a childhood favorite "Lost in Space."  Long after the show was over on the TV this brightly coloured story-line would continue "out there" and I would confuse what was happening on TV with what was happening in real life.

I can vividly remember this "confusion" long into my junior high school years.

The thing is, with those around me not recognizing what was going on, as I matured my parents looked at me through an entirely different lens.  I remember being 13 and my father labeling me a "psychotic liar," and I didn't even really fully understand what that meant.

As I matured my confabulation continued, taking on a different tone/aspect.  Where my memory would fail me, my mind would come up with fantastic distortions of reality.  The resistance and anger of my father only became more pronounced.

Taking into account that I was also a victim of childhood sexual abuse, and the trauma associated with that, my mind would constantly fly into a realm of fantasy in order to cope with what was done to me.  Even though I was an exceedingly verbal child, I had no way of describing to my parents the abuse I underwent, I knew that they would not believe me even if I could.

I remember the 7th grade, running up and down the halls of the junior high school fighting imaginary monsters, and running with imaginary friends.  This was more than my parents could or would handle and not too much longer after this I was placed in the "Archie F Hay Village School 'for the emotionally disturbed' " (I despise that title :(   .)  Rather than helping me, this "placement" made the problem only worse for me.  My young mind gave up completely, trying to separate fantasy from simply was no longer exercised and stopped trying.

By the time I turned 13 this fantasy world in my head became morbid and dark, reflecting my life at school and at home with my parents.  I would lay alone in bed at night, unable to sleep, for hours imagining "demons and monsters" and other imaginary creatures staring in through my large bedroom picture window.  I would remain haunted by my mother's painting of a clown on my bedroom wall, thinking it was going to wait until I went to sleep and kill me in my sleep.

Not everyone with ACC has such profound confabulations, and even when they do it can largely end in childhood as it does with NT children.  This was not the case for me.  Whenever throughout my adolescence I was faced with a stressor, an emotionally untenable situation my mind would write into my memory a fantasy to deal with it.  I remember at one point even trying to convince my parents that I was dying of a deadly disease (to their dismay.)

Today, as an (older) adult, confabulation still happens, although not in such fantasies.  Where I have "missing pieces of thought or memory" due to inadequate memory formation or recording, my mind will make up the answer.  As I am older there are certain cues that make me aware that this is happening, something I didn't have in childhood.  If I absolutely insist something occurred a certain way, and those around me insist it did not, that is one obvious clue.

I can swear to somebody, in all honesty, that I had this detailed conversation with them only to discover through others that it never happened, or definitely did not happen in the way I remember it.

Now, factor in the gaslighting of my father, him trying to convince me I was insane, morally flawed, and the time I was in my mid twenties I was suicidal and had been hospitalized several times for the same.

For decades, not understanding my ACC I learned to hate and to judge myself, believing my father's
lie that I was "morally flawed" "evil" "psychotic" (and worse.)

Imagine, if you will the relief I experienced when I was diagnosed with ACC...

Being the encyclopedic braniac that I am I immediately studied, learned and digested everything that was currently available about ACC.  I went from being a victim to someone who for the first time embraced all of his self with unconditional (for the most part) love.

Being "trapped in my mind" and its great ability to imagine was much like the bird in the gilded cage... even though the door lay open before me, I could not recognize was literally a living hell for me.

Strangely, having studied and learned about this phenomenon, I have been able to largely rein it in.  As an adult with a mind capable of (somewhat) higher reasoning, I can recognize (many times) that my memories are not "in sync" with reality, and immediately lay aside the false information and try to correct the error.

Sadly, as an adult, this does nothing to cure the wounds of judgement, of misunderstanding, even hatred that is heaped on me by my own adult family...whereas I was trapped unwillingly in a cage of my imagination and ignorance, they choose to remain ignorant and unwilling to learn the truth about their son, their brother, their relation.

It will likely take me the rest of my life to reconcile, resolve and learn to let go of all of this.  There is no change when an individual is unwilling to look outside of their own thoughts, emotions, imaginations...and this is true not just for me, the weaver of great stories and imagination untold, but for my NT parents who comfortably remain in their ignorance, and pain and suffering.

This is just one person's (with ACC) view into what it is like to live with this brain disorder, I know other's experience may be different.

I hope some of you have benefited with a glimpse into what it is like to live as this Boy With a Whole in His Head.

Sunday, January 4, 2015

"The two most important days in your life are the day you are born and the day you find out why...."

In July of 1962, I was born Scott Joseph Galbraith...

In October of 2008, through the encouragement and support of my dear late friend Troya Patch, I was diagnosed with ACC and later ASD.

That day was truly the most important day of my life.  One in every four thousand births globally are born with a disorder of the Corpus Callosum...many (like I was) suffered through their lives, misunderstood, incorrectly or completely non-diagnosed, questioning our own sanity.

While ACC can be considered a spectrum type disorder, while individuals with it can appear severely disabled or relatively "normative", research bears out that all born with a collosul disorder experience certain cognitive and memory traits, social and communications traits, not seen in the general population.

I want my average reader to put yourself in my shoes, up until 2008.  I was a man in my forties, that had been shuffled off with various mental health diagnoses, and when neurologists may have been aware of this brain injury, it was often shuffled off to the tune of "well you didn't need that 'little' piece of your brain, anyhow" or some such ignorance.

Truly that day in October in Southern California, was the day  I found out why I was born.  I had a choice to mourn, to feel slighted, and angry, manipulated and shunned (which I did, even after the diagnoses for a short time), or I could let it inform the rest of my life.  My diagnose(s) with ACC and ASD filled in the missing pieces of a picture, of a puzzle that was of my own unique making.  I knew immediately what I had to do.

I decided, with full knowledge that it was too late to heal the rifts and wounds in my own family, inflicted by ignorance, hatred, and shame, but I could help heal, or even help others avoid, from ever having to go down that road in the first place.

I want you to hear me again:

One in every four thousand births are born with a collosul disorder.

It is possible that one in four thousand people you will ever meet, are born with this congenital brain injury, and never discover "the day they found out why."

Agenesis of the Corpus Callosum is the most common congenital brain defect in the human gene pool, even as it is so exceedingly rare.  I want you to think long and hard about all the many going through life, fighting for life, that are constantly on a daily and hourly basis running into stumbling blocks, and outright barriers to living the full life, a life of meaning, a life of purpose and fulfillment.
I can tell you, I think about them, all of them, every day. I know their struggle, self deprecation, self induced hatred and shame, and depression.

THIS is why I was born....

And don't get me wrong, I don't style myself anybody special. Not, at least in any exclusive way.  All I know, is that out of my own grief and pain and desire to heal the wounds of my childhood and much of my adulthood, I can reach out to others with ACC.  I can reach out to their parents and loved ones, providing them what little support I am capable of.

Here's the rub though....

What about those many undiagnosed ACCers out there?  To have this condition, and to not know it,  is nightmarish.  Uneducated doctors will diagnose that person with a number of conditions, bi-polar, schizo-affective, personality disorder, or worse, because they lack the training to recognize this most common of rare congenital birth defects

I want you to walk in their shoes...

I do, I walk in them every day.  Although I have been blessed to be diagnosed and treated, been blessed to endeavor not so much to change what I thought broken, but to thrive with what I have been given.  We are not all savants, like my hero Kim Peek, whom the "Rain Man" movie was modeled after, who had ACC; but we, each and all of us do have a gift, a reason we are here in this world.

I envision the day that ACC is as well known as autism.  One could make the argument that ACC is the second most common developmental disorder next to ASD.  There are many reasons that this hasn't happened yet.

I'm still in the process of writing a book about my life, and about what it is like to live with this disorder; what parents and loved ones can do, if they suspect or know their child or loved one has ACC.  As with ASD early intervention is absolute key with ACC.  Sometimes the child with a collusul disorder shows barely any "symptoms" until the age of 13.  This most magnificent part of the brain, at 12-13 "revs up" begins making new connections in the brain, increasing higher reasoning and socio-emotional skills.  It is largely at that time that a child with ACC is seen to lag behind her peers.

I had been wrongly diagnoses with ADHD from the age of 5 myself, they ASD diagnoses did not even exist at the time.  Let alone, doctors were (and still largely are) ignorant about this most common of rare birth defects, and its many implications.  I remember those days clearly, I remember being 12 years old, having no friends, I remember feeling like a five year old amongst graduate students.

In Junior High, before I was put in "special school" I remember running up and down the hallways causing mayhem, just in the same way you would imagine a five year old.  I couldn't grasp the concept of personal or social responsibility.  I lacked any formation of "Theory of Mind", or 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.  I lived in a world of fantasy at a time when my peers were already thinking about such things as growing up to become an astronaut, a fireman, a father and a husband.

I thought and believed that what I would watch on TV was reality.  My personal confabulation was so strong I often could not tell objective reality from the fantasies generated in my mind...I knew I was different, but I didn't know why I was different.

Following the "lead" of my parents and peers, I learned to treat myself with  rage, disappointment, embarrassment, hatred  and disgust.  Through the constant Gaslighting and denial of my parents, I was lead to believe that I was a morally flawed individual, that I "just wasn't trying hard enough", was "lazy" "manipulative" and worse, my own father branding me a "psychopathic liar."

Such was my introduction to adult living.

I had such a fear and distrust and misunderstand of myself, that I had been convinced by others that I could not take personal responsibility for my life...and I carried that baggage proudly until the age of 46 when I was diagnoses with ACC and autism.  As I have written before; sitting in the neurologist's office, I could see him being pensive, worried about how I would take the news, as he explained to me after looking at my brain scan "do you know, you were born without your corpus callosum?"

In that very moment, all the self imposed shame and guilt began to melt like a glacier in the sun.  All the years of gaslighting by my parents and some others around me, having me believe that I was insane ended in that moment.  The "light" turned on in my head, I knew WHO I was "when I was born" and WHY I was.  The relief was palpable.

It has taken me years, and will take many more years, to fully recover from the shunning and gaslighting of my family, and ignorant doctors, but that is OK.  I know why I am born, why I am here...if I can help just one, single person or child with this congenital defect not go through what I had, I will have done my job in the world.

In a few weeks I will be participating in the Corpus Callosum Research Project ran by Dr. Lynn Paul.  There will be three days of taking pictures of, the poking and the prodding of my brain and behavior, to better understand Agenesis of the Corpus Callosum.  While there is sure to be a great deal of self-discovery in this process, largely I do not do this for myself.  I do it for all that are born after me with ACC, to give them a better life.  I do it so that people like Dr Lynn Paul and Dr Elliott Sherr can better understand this gift I was born with, better equipping boys and girls, young men and women, old men and women alike, to better live...nay...THRIVE with ACC.

I will try to write during the process, although it may have to wait until I am through, we'll have to play it by ear, but you'll be sure to hear all about.

I know I have already, but I want to take this time in the first days of 2015 to thank all of you that have been and continue to be part of my journey into self discovery, thank you for supporting me, supporting my blog and all my efforts.  Let's each one of us, as much as possible help others with ACC find out not only who they are but why they are.  We need not languish in the shadows any more, but thrive in our own unique ways.

God Bless you all, and I wish a very happy, healthy and productive 2015 for all of you.

~Joseph Galbraith

Tuesday, December 30, 2014

Picking up all the pieces...

I know there are some adults with ASD that reject the symbolism of the puzzle piece.  I can understand this, since (I believe) it originally came from the organization Auti$m $peak$.  If you wish to be supportive to families dealing with autism, they are the last place you'll want to put your hard earned money and support.

You might ask why, well:

  • Auti$m $peak$ does not have a single autistic member on their board.
  • Auti$m $peak$ only spends 4% of their budget on “family services”.
  • Much of Auti$m $peak$’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
  • Auti$m $peak$ produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Auti$m $peak$ was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Auti$m $peak$’ Youtube channel.
  • Auti$m $peak$ is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
Now that I have gotten that off my chest (LOL):

Having both ACC and ASD, I am always struggling to put all the pieces together in my life.  Much like the childhood puzzles I remember playing with, I would rearrange the pieces and put them back together, but the last piece would never fit.

Having said that, much like the picture above expresses, I always feel like the odd piece left out.  I don't quite fit in the ASD community, or the ACC community, or the "normal" community, my religious community, and just when I think I do, that one last piece refuses to fill the hole in the puzzle.

Much like the hole in my head, I exist with a hole in my heart.  I don't blame the world for this, nor do I exactly blame myself, but such it is...Like many with ACC (or ASD) I often find myself at odds with even those others born with the same condition as myself.  I suppose this shouldn't bother me, I know this is true for NTs in the "real world" to a large extent also. I am particularly feeling this in the holiday season.

For whatever reasons, unknown to me, my family feels such shame about who I am, that they must make up lies and stories in their heads, to reject me and "protect themselves" from harm.  Even in the face of direct medical evidence, MRIs of my brain showing my ACC, doctor's reports diagnoses my Autism Spectrum Disorder, they still insist "I am a liar", "I am looking for attention", "I fabricated my illness" etc...

This isn't much different than others in the NT world I come across, even well meaning friends.  I'll hear comments like "you don't look disabled", "you don't sound disabled", and more...Answer me this, what the hell does  disabled look like?  With the deepest respect to those on all parts of the spectrum, not everyone with autism is a mute headbanger....furthermore, not ever mute headbanger is intellectually disabled.  Everyday it is found when nonverbal autistics find a way to communicate, be it a sound board or a keyboard, some of them have extremely high intelligence, while remaining in a "locked up body."  Some like myself pushing 180 or higher in IQ speak very well, even eloquently, yet cannot manage the subtlety of face to face communication, social cues, and have severe issues with memory and executive function.

I guess what I am trying to express is my experienced exhaustion with trying to fit into the molds other people create for me.  Perhaps, I will always be the odd piece out if this is the case.  I think rather the world is one great interlocking puzzle to which each person has a unique function and place.  As Einstein said "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."

Those that love me and support what I am doing are constantly reminding me of this.  When I express to them my grief of having a family who abandons me, they remind me of the good things I am doing in the world, and the lives that I touch in doing so.  I want to take this moment, and thank all of you who have and continue to support my efforts to educate people about what it is like to live with ACC and ASD...To those that offer me sometimes even daily encouragement, when I am down, I am most grateful.

I'm unsure what 2015 holds in store for me, and when I sometimes look, and see no light at the end of the tunnel, you are there at the tunnel's end calling me forwards out of the darkness.  I honestly don't know what I would do without all of you and your encouragement.

May all of you that are reached by my blog have a most blessed 2015, and onwards.


Friday, December 26, 2014

Gaslighting 101 & the Abuse of the Disabled

Over the holidays I have spent some time talking with one of my ASD friends, about the "situation" with my family.  We talked at some length and then she brought up the subject of "Gaslighting."  Admittedly I had heard the term but was not really all that aware of what it meant and its implications.

The term Gaslighting come from the 1944 film “Gaslight.” In this movie the pianist Gregory Anton launches a secret campaign to drive his wife, Paula, insane—and to have people in her life also believe she is crazy. He dismantles her sanity through subtle manipulations of their home environment and little changes in the details of their conversations.

Specifically Gaslighting is "the systematic attempt by one person to erode another person's reality, by telling them that what they are experiencing isn't so-and the gradual giving up on the part of the other person" (Dr. Robin Stern-The Gaslight Effect)

This form of abuse is as subtle as it is insidious.  The abuser has their victim so confused, and so doubtful of their own reality that they often think they are crazy.  It can also be hard to prove, as we don't usually journal the everyday moments of our life.

My own father, he calls me a "psychopathic liar", insists "I am not disabled", "I am immoral", "I am manipulative", when the entire time he is actually describing himself, not me.  I went through childhood emotional abuse, bullying, sexual abuse (by another relative), all the while having it drummed into my head that this was my "imagination."    Furthermore with a person that has ACC, it is very easy to manipulate their memories and imagination.  My father would just continue to repeat lies over and over until I believed them, or at the least doubted my version of reality. 

At the age of 19, I began using my middle name (Joseph) in place of my first name (Scott) and have lived so ever since.  He would tell me such things as "only criminals change their name," etc...All the while, the man has never used his first name (Robert), but gone by Dick or Richard (his middle name.)  The ultimate in hypocrisy, as he is accusing me of what he himself had done.

My father is so manipulative and volatile even at the age of (almost) 80, that he has my entire family wrapped around his little finger.  I have a 22 year old nephew, and his sister, my niece, that I have never been able to get to know.  I have a brother 3 years older than I that has not been able to know the truth about my ACC and ASD.  He would have them believe all the lies he has manipulated them into believing.

He would have my brother forget his father's alcoholism and the years of emotional and verbal abuse that we both suffered under, and act as if it never occured.

Talking with my good ACC friend Sara, we surmised that it would not be surprising to see this type of Gaslighting abuse prevalent in our generation of ACCers and ASDers.

<VENTING>I can say right now, that I am taking a stand, I will no longer bow to his manipulations.  While I have no family, the loss is truly his not mine.  The only thing that saddens me, is this form of abuse I am sure has been passed on to my nephew, as I know for a fact my father has repeated the same lies and manipulations to him that he had to me.  I can also say, there will come a day when his house of cards will come falling down, and everyone will see this man for who he really is.  I hope that day comes soon, but I will not be holding my breath.</VENTING>

I'm sure I'll have much more to say about this in the future, but for now I will let it stand here...
Thanks for listening/reading!

Happy Holidays to all of my friends and chosen family, may  your New Year be bright and happy!


Saturday, December 20, 2014

ACC, not just "missing wires" but REwired...

As it turns out, those of us born without a corpus callosum are informing researchers on aspects of autism spectrum disorder.  Not all of us with cACC would qualify for an ASD diagnoses, but many do.  Groups such as the Simons Foundation Autism Research Initiative have discovered some fascinating things, which I have known intuitively all of my life.

It used to be though that those with a collosul disorder simply had wires missing, and that otherwise we were like NTs.  It has been observed that this is not the case. What the SFARI discovered was that our brains are actually rewired, with the "wiring" we do have.  In light of neuroscience this actually makes quite a bit of sense.  We know that the human brain, continues to grow, neurons continue to migrate and make new connections, sever old connection well into our mid-twenties.

The brain, it is also widely known now, is an adaptive organ.  This isn't the 70s where, when I grew up it was thought you were "born with so many brain cells, and if they die, tough luck."  Studies as the ARI and Dr Paul's Corpus Callosum Research Program, are studying just how plastic the brain truly is.

For an example, I have been through neuro-psychiatric testing several times.  There is what is called "interhemispheric tranfer."  This means the passing of information from the left to right or right to left lobes of the brain, through the corpus callosum or the much smaller anterior commissure.  Theoretically it should be impossible for me to do this, as I do not have either of these neuron bridges between my right and left lobes...Yet it has been observed that have do have some.  This is a clear example of the brain rewiring itself.  Now, that being said, in my testing it was observed that I had some IT (interhemispheric transfer), but faltingly, and very slowly, and the the more pressure put on me, the less I was able to do so.  Still, it is astounding that I can do it at all.

Yet, even as the brain is able to "rewire" itself, the most functional of individuals with cACC are still seen to have subtle language and social issues.  The most obvious one is meta-linguistics or secondary meaning of words; inferences.

While I can appreciate and even initiate irony and inference, and the non-literal meaning of language, particularly in it's written form, it was observed that in spoken language I do so inconsistently.  I have known this all of my life, but only in these recent years have been able to express it, thanks to learning about my congenital defect and my autism.

I think about the strange and amazing wiring of Kim Peek the real "Rain Man" that the movie was written about, who was born with cACC as I am, and his magical gifts..

The ideas that the SFARI study bring up are intriguing to me.  The entire concept of brain plasticity infers that the brains of us with pACC and cACC might someday be coaxed to adapt and learn and grow in a way that improves our life's outcomes.  I am grateful to participate in the Corpus Callosum Research Program, and will be studied next month.  While this will largely improve my personal insight into my condition, I know the research will have a profound impact on future generations.

As I undergo the study next month, you will hear much more about it, I'll be sure to include copious amounts of blogging on the subject.

Till then!

Monday, December 15, 2014

Diagnoses...for me...was waking from a nightmare

I often think of what it must be like for other adult ACCers who have not been yet diagnosed with the condition...I remember how it was for me.

While ACC like ASD is a spectrum, there are many (MANY) of us out there, suffering, struggling through life, without the benefit of knowledge of our condition.  I reflect on the self-imposed shame, guilt and self-hatred that was a major part of my psyche for most all of my life...

waking from the nightmare
It is estimated that 1 in every 4,000 births has some sort of collosul disorder.  Going undiagnosed, then, like me they spend perhaps their entire lives, misdirected, misguiding, misdiagnosed and not able to live to their full potential.  Many ending up in mental hospitals, prisons, or worse even dead.

When I was a child, I know they were aware of my brain anomaly, but even neurologists were quite ignorant of ACC and its implications.  Today, there is more knowledge of the condition, but it is still not routinely diagnosed.  As a child, doctors would say stupid sh*+ like "oh, he doesn't need that little piece of his brain, he'll do just fine!" and other such ignorant things.  Today, we know this is simply not true.

I mean, think of this rationally,ok?  As far as the human organism goes (not addressing soul or spirit) we are our brains.  At the very least, the brain is the receiver, transmitter, and processor of information with and in the "outside world."  How could a computer work, if you took out a RAM stick, or had a faulty hard drive, worse yet a faulty processor? It would not work normally, if at all, right?

By the time I was in my mid twenties I had already begun a hopeless journey through the mental "health" system, being drugged by countless medications, that, God know WHAT did to me, and in many cases creating problems and exacerbating any comorbid conditions I did have.  I had learned to hate and distrust myself, feeling that I was inherently broken, inherently imperfect (again, other than a spiritual sense, I'm speaking as brain/personality.)  I learned to hate myself, to treat myself with utter contempt, becoming my own worst critic and final judge.

Much of my life was, "couch hoping", depending on the good will of others to "take care of me."  When I was an adolescent, I was not, like my peers, thinking about career, thinking about how I would contribute to the world, no...I was thinking "who will take care of me."   I felt and believed myself to be entirely dis-empowered, unable to meet my own needs without the constant concern and care of others.

And there were and are SO many well meaning people in my life, SO many caring individuals, that throughout this time reached out and tried to help.  Yet, I would "wear out my welcome," as others realized I saw myself totally dependent, and unable to stand for myself.  Today, post diagnoses, I wish I could go back throughout my life, and thank all the many people who tried to help and guide me, some of which today, I cannot even now remember...yet this is impossible, so I write this blog.

When I was diagnosed with ACC, and shortly after with ASD, it was not like some might imagine, that the label took away my power, that I became dependent upon, the opposite was true.  I was overwhelmed with the positive knowledge of who I was.  I was (in my eyes) no longer broken, I was no longer the character flawed misfit that my father tried to convince me that I was, and that I believed I was.  When I learned what it was that I was not, when I discovered what I could not do, it rather freed me entirely.  I no longer spent my life trying to do what I could not.  I began to focus on and discover my skills, my strengths and to lean solely upon them.  Where I found ability but weakness, I began to learn how to use my strengths to bolster and improve upon my weakness, but I no longer hated nor judged myself for that which I was not, for that which I could not, and will not ever be able to do.

I remember leaving the neurologist's office in 2008.  I immediately got on the payphone at Kaiser with Troya my BFF who I lived with.  She asked me "how do you feel about all this?"  I remember being SO overwhelmed with positive and negative feelings that I said "I just don't know yet."  She told me that this was ok, "how could I?"

Alongside the positives of diagnoses, and waking up from this horrible nightmare of life, came truckloads of bitterness and resentment for not having been understood and diagnosed as a child.  Unrest in my soul for the many years of my life "lost" because I didn't know about my ACC.  I still struggle daily, I pray, I do good works, in the hopes of releasing more of this angst.

I have learned since that time, that today many ACCers are diagnosed at an early age, even in utero.  This has given me tremendous comfort...No, I cannot change my history, my past, but knowing that it is different for children today, and knowing that I can blog, I can reach out, I can share my experience with others, well, it fills my soul with tremendous love, tremendous healing and hope for others like me in the future.

The Corpus Callosum Research Project
Next month, I will be partaking in the Corpus Callosum Research Project led by Dr Lynn Paul.  This research is aimed at more closely identifying the deficits associated with being acollosul.   And, while it is largely for me an exercise in self discovery, it is moreso filled with a lot of hope that I am helping others with my condition in the is a great relief for me.  Stay tuned, because I am sure to blog freely about my three day participation in the study. I will be scanned again, and studied, and interviewed...and honestly part of me feels a HUGE sense of vindication for all my "lost years."

My own parents refuse to acknowledge my ACC even when I have provided them proof, but like I can make up a hole in my brain?  I'm hoping that Dr Paul's research will assist others in reaching out to my family and healing old wounds before it is too late for my elderly parents.  Hopefully I'll write more about this in the future!

My gratefulness, my thanks to all my many blog followers, and my continued hopes that my words offer some sort of hope, and instruction, and indication of how good life can become for someone with Agenesis of the Corpus Callosum.

Monday, December 8, 2014

Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

A requested repost from an earlier date>>>>>>>>>

I want to talk about the ACC and ASD phenomenon of meltdowns.
First we must establish that a meltdown is not the same thing as a tantrum:

In a typical tantrum from either child or adult, one observes that they have control over their
behavior, choosing to engage in it.  The goal of a tantrum is specific to something one wants or does not want...if the individual gets what they want, the tantrum can rapidly end.  During a tantrum the child or adult focuses on others around them, communicating, yelling at them and drawing their attention directly.  Typical in a tantrum the individual is looking for a reaction, can talk, negotiate but with demands and yelling, even hitting or kicking or destroying property.

Meltdowns, on the other hand occur when the brain is overwhelmed with stress chemicals and has entered the fight or flight stress reaction; the stress building up to the point that the brain overwhelms and loses the ability to cope. 

In a typical meltdown, the individual seems to be in a panic mode, has no control over their behavior.  They are unable to talk or problem solve, negotiate or reason.  Cannot easily or at all follow directions, argue with you, generally so overwhelmed they cannot even engage with you.  Someone experience meltdown feels unsafe and reacting from extreme fear.  If you try to talk to them, it will be nearly impossible to identify the cause of their emotions, or any wants or demands. The two most common causes of meltdown are sensory overload, cognitive stress or social demands that exaust the brain's resources.

Rather than what is seen in a tantrum, the individual is not trying to gain something they want, but escape what is overwhelming them.  They will often attempt to flee or escape the situation, but not seek attention. The only time someone in meltdown would become violent, hit, kick, bite, scream is when you try and attempt to calm or redirect them, if you back away from them, give them personal space, remove any demands made on them and stop interacting, the aggression will likely cease immediately. Unlike a tantrum a meltdown takes time to dissipate, needing time to escape stress, regroup and  reset.  The one having a meltdown often expresses remorse for their meltdown and actions occurring because of it.

In both ACC and ASD meltdowns are precipitated by fright and fear. Fight or flight is triggered and the person tries to escape the source of stress and seeks proprioception (physical stimulus, hitting, self injury, rocking and other behaviors, as these release stress chemicals.  During a meltdown we do not want to interact with anyone or seek their attention, and desire to isolate ourselves, withdrawing for the stressor(s).  If we don't feel safe, we act against the people or property around us to get them to back away, or release stress chemicals.

Sensory Processing Disorder is commonly found in individuals that are ASD and/or ACC and is a common cause of meltdowns. Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Cognitive overload is a situation in which there is too much information to process or too many tasks to perform simultaneously, resulting in the individual being unable to process this information.  This results in a reduction or elimination of the executive functions and higher reasoning, producing anxiety and stress, and sometimes even triggering the fight or flight mechanism mentioned earlier.

This toxic dyad, sensory over stimulation and cognitive overload are part of the daily life of those of us with Autism and/or ACC, and should be understood by parents, caregivers, educators and law enforcement, concerned friends and family (I can think of a few more), and it would make our lives so much better.  Those of us on the spectrum tend towards a lot of self blame and self hatred because what is constantly reflected back to us is that we are choosing our condition/social-emotional situation, that we are inherently broken and "different."

It does not have to be this way.  We can learn to accept the differences of individuals and allow them room to grow and thrive in their own way.  But in order to do this we must educate others.  I hope this post has done just that.


Friday, December 5, 2014

The Importance of ACC Research...

So, I am very pleased and excited to be asked to participate in a study about Agenesis of the Corpus Callosum...

Having spent the greater part of my life undiagnosed for either ACC or ASD, when I became diagnosed (and even today) I hold a tremendous amount of bitterness, regret and anger in my heart.  I know that with early intervention those of us with this condition can be taught to thrive, regardless of our disability.  I myself was not diagnosed until I was 46 years old...that, despite growing up with unidentified special needs, going to "special" school and the like.

Complete Agenesis of the Corpus Callosum
In those 46 years, I received many wrong diagnoses, everything from bipolar to schizophrenia, to God knows what.  In 2008 when I was diagnosed with ACC then ASD my doctors clearly expressed that all of these diagnoses were incorrect.  Today, besides ACC and ASD, I still hold the diagnoses of depression, PTSD and ADHD.  I jokingly tell people I am "alphabet soup."

It isn't just the fact that my outcome would have been different with early diagnoses...but all these wrong diagnoses, and treating me with inappropriate therapies and medications wreaked havoc on my mental and emotional health.  Until the age of 46, I carried around tremendous self-imposed guilt, shame and hatred, always knowing that I was different, but never understand just how different, or why I was different.

On top of this, I spent the majority of my life continually trying to do things and be someone  I was not.  The old saying of "doing the same thing, expecting different results, is insanity" applies here.  Prior to my being put on SSDI in my mid to late twenties, I had well over 50  job (attempts.)  The longest I lasted at any job was six months, but usually they lasted no more than a few weeks to a month, sometimes only days.

Now, I just want you to imagine what that would feel like for you, if you were me.  Can you for a moment imagine the shame and guilt, the self blame that you might experience, if you try and try and try and never get new results?

I grew up with two very hard working parents, and I never lacked for anything (physically/monetarily), and for that I am very grateful.  Yet my parents grew up in a generation that worshiped the so-called "Protestant work 'ethic' ."  I was constantly led to believe that the cure for all ills is just applying yourself harder, working harder.  And if you couldn't do this, in their eyes, you were morally or ethically flawed.

Like many with ACC and/or autism I am very intelligent, and in controlled environments I can test highly on IQ, and different functions, but given those same tasks in a real life uncontrolled situation I consistently fail to perform at an optimal level.  While today I am learning to accept myself as God created me, I still default back to being self-critical, judgmental and even hateful towards myself when I can't perform as an NT.  I'm learning to change this, but the change (any change really) does not come easy for me.

Next month, I am going to participate in a study on Agenesis of the Corpus Callosum under the wing of Dr. Lynn Paul and the Corpus Callosum Research Program and I'm incredibly excited about this.  My parents to date refuse to believe in my disability.  I had (and still have) major issues with confabulation, and was branded by my own parents a "psychotic liar" (which all of my doctors emphatically denounce as false) and even worse.  I've not had any meaningful contact with them in well over 20 years.  Dr. Paul is so well known, and her research is so well respected, I'm hoping that my parents get wind of this study, and maybe they can have a change of heart.

They (my parents) even accuse me of fabricating ACC and ASD.  And I ask you, how can I fabricate a literal hole in the center of my brain?  How can I fabricate enlarged ventricles that take up a major portion of what should be the occiputal lobes of my brain?

Needless to say, participating in this study has me feel that I am getting some retribution (not sure if that is the right word) and acknowledgement, even while my own family refuses to accept the facts.

There are many like me, adults with ACC and other comorbid disorders that are rejected by there families.  Hell they didn't even have the term autism until I was out of school, and ACC, these stupid doctors would just tell parents "he's missing a little part of his brain that he doesn't need."  EXCUSE THE F*CK out of me, but who in their right mind could say with an honest face that you don't need a piece (an extremely important piece btw) of their brains?

I'm not going to pull punches here.  I underwent loads of abuses in the so called "Archie F Hay Village School for the Emotionally Disturbed" including restraints, beatings, isolations and more.  I endured the ridicule and rejection of my own flesh and blood family...false accusations, blind judgements and flat out shunning.  To this very day, I have regular nightmares and night terrors about what was done to me in that school.  I am quite certain my parents did not know what happened, they did not want to know what happened there.

And, despite the fact that I have always had a very high verbal IQ, I was not able to, nor did tell my parents anything about those abuses.  I also underwent sexual abuse of relatives, which my own parents still insist I am lying about, not to mention the horrible bullying and emotional abuses from my own father.

Dr Lynn Paul
Dr. Paul, well, she is one of my heroes.  The research she is doing is already improving the lives of children and adults with Agenesis of the Corpus Callosum, and will have a profound impact on the lives of those like me born in the future.  I am so proud to participate, and feel a great deal of vindication (that's actually the word I was looking for earlier.)  IF in the presence of all this research and data my blood relations still refuse to recognize my ACC, to recognize my ASD and my differences, and why I was the way I was/still am I will finally be able (even though with great sadness) to wash my hands of any responsibility towards reconciliation with my family.  It tears my heart apart that my parents are both very old (77 and 80) and they may soon go to their own deaths never knowing what a wonderful and special person I am.

So, thank you Dr Paul, and also thank you Dr Sherr (another ACC study I am enrolled in) for believing in me, studying me, using what you learn about me to improve the outcomes, the lives for many in the future!