Monday, September 29, 2014

Existential Dread or "Angst Without Handles"

While I can only speak to you of my personal experience, being diagnosed with both ACC and ASD, I know that what I am going to write about it common to those on the spectrum.  I've also talked to enough ACC folk to realize that it can occur with us as well.  What am I speaking of?  What is Existential dread?  It is "angst without handles" or free-floating anxiety.  

Angst means fear or anxiety. The word angst was introduced into English from Danish angst via existentialist Søren Kierkegaard. It is used in English to describe an intense feeling of apprehension, anxiety, or inner turmoil...

The first, and in my opinion most important thing to realize about this type of anxiety is that it is not dependent solely upon one's thoughts.  Certainly with the intrusive thoughts that ACCers get, that can be a cause of great anxiety, but free floating anxiety is most often without a cognitive source, or without a concrete thought process spurring it on.

Quite often when doctors are not aware that a patient is ACC, they might even be wrongly diagnosed with bipolar disorder, because from only the external point of view, it appears to outsiders like a manic state, but it is not. The anxiety is "existential" because it is at the core of the person, almost experienced as if part of their identity.  For this reason often cognitive therapy fails to produce any long term relief.  It appears "manic" because it can come on, at any time, unannounced and unprovoked, build up to a crescendo and become utterly disabling. 

I spent many years trying to cope with the facet of my life, largely to fail doing so.  I realize today that the point of view that I was approaching it was incorrect.  As I mentioned earlier, an existential dread does not necessarily have a thought process as its foundation.  That isn't to say that intrusive and out of control thoughts do not exacerbate this horrible fact they feed it and cause it to snowball out of control.

The most successful approach I know, to even begin to cope with this horrible experience is Dialectical Behavior Therapy. It developed by Marsha M. Linehan, a psychology researcher at the University of Washington, to treat people with borderline personality disorder, and has found great success in those with TBI (traumatic brain injury).  Primarily it teaches an individual distress tolerance skills and mindfulness; being able to specifically identify felt states and use techniques to change them.

The first coping skill is used to distract oneself from painful emotions and is called ACCEPTS:

  • Activities - Use positive activities that you enjoy.
  • Contribute - Help out others or your community.
  • Comparisons - Compare yourself either to people that are less fortunate or to how you used to be when you were in a worse state.
  • Emotions (other) - cause yourself to feel something different by provoking your sense of humor or happiness with corresponding activities.
  • Push away - Put your situation on the back-burner for a while. Put something else temporarily first in your mind.
  • Thoughts (other) - Force your mind to think about something else.
  • Sensations (other) – Do something that has an intense feeling other than what you are feeling, like a cold shower or a spicy candy.

the next skills is Self Soothing:

This is a skill in which one treats oneself in a comforting, nurturing, kind, and gentle way. You use it by doing something that is soothing to you. It is used in moments of distress or agitation. This could be prayer, meditation, listening to music or another activity that brings about a peaceful state of mind.

next we are taught to IMPROVE the moment

Imagery - Imagine a relaxing scene, when things have gone well in the past, or other things that please you.
Meaning - Find some purpose or meaning in what you are feeling. Tack a word to it.
Prayer - Either pray to whomever you worship, or, if not religious, repeat a personal word to yourself.
Relaxation - Relax your muscles, breathe deeply, practice progressive relaxation.
One thing in the moment - Focus your entire attention on what you are doing right now. Keep yourself in the present.
Vacation - Take a break from it all for a short period of time.
Encouragement - Be your own Cheerleader. Tell yourself you can make it through this!

Among other skills is Emotional Regulation (I found this one particularly helpful):
  • Identify and label emotions
  • Identify obstacles to changing emotions
  • Reduce vulnerability to emotion mind
  • Increase positive emotional events
  • Increase mindfulness to current emotions
  • Take opposite action
  • Apply distress tolerance techniques
Unfortunately I can only give a short overview of DBT in the small space of a blog.  I can tell you that this can be learned/practiced individually, with the aid of a book/workbook, with a therapist, or in a group, so it can be adapted to your unique situation.  

The source materials I recommend would be:
and the book and DBT Diary I personally use:

While DBT will not eliminate the extreme anxiety and dread feelings that I am writing about, it can help to reduce and make the more manageable.

I would think, that these skills would be workable by a teenager and up with ACC, but there are still many skills that can be taught early on to younger children.

Telling us to just "change our minds" or "stop thinking that" will not help someone with angst without handles.  Likely you will just serve to escalate the anxiety.  I also find very helpful a weighted blanket, that gives constant pressure and sensory input and has a calming effect on many with ACC and ASD. They are particularly effective with the younger folk who may not yet be ready for DBT.  You can find weighted blankets here: SensaCalm is a great source for these.

Not for one minute do I wish anyone to have experienced the extremes in anxiety that I can have.  Most people (myself included) collapse mentally under its weight.  I also use, for emergency only prescription Xanax, a potent anti-anxiety medication.  There are certainly moments when none of the skills I have learned and practiced will help in the moment, and I'm grateful to have the medical support, but I do not depend on it.

I hope you have found my post helpful!


Friday, September 26, 2014

Change, Chance, & the Frustration of Being...

People with ACC do not like change.  We prefer pattern, and repetition, and we don't do well when someone or something interferes with our ability to follow through on a task or thought.  It is almost like I hear from those with ADHD (one of the many diagnoses I received before discovering my ACC and ASD), and that I can really relate to, that "we must say what we need to say or do what we need to do RIGHT NOW, or we may forget it."  I'll often just give up in frustration whatever it was I was attempting and hate myself for having done so.

There are so many memory and thought processing issues with ACC that we seek to cling to sameness and do not do well with differences.  Even deeply ingrained habits that I have learned, I have learned to do a certain way, and if you interrupt that way, it causes confusion, frustration and even outright rage and anger.  Often it will give way to not caring and abandoning the thought or task, which only provokes more frustration and anxiety.

Thinking about my school years, I had taught myself to do division in a way that worked, that got the correct answer every time, but the school(s) insisted I do "long division."  They would fail me, simply because I refused to do this long division, even if I got the answer correct.  Does anybody besides me see a big problem with this?

This is why I have a problem with common core mathematics.  Besides the fact that it is totally confusing (I still do not understand it) it is forcing a child to learn a set way of doing things, when they might find an even more accurate and easy way to do them.  The way "no child left behind" has been implemented, it serves to stunt (in my opinion) any real growth and understanding a child may have, and forces round pegs into square holes.  

As an adult, I have circumscribed my social activities, because I don't cope well with chance, or unexpected changes.  I really dislike conflict and avoid it at all costs, because I just go on automatic defense, start yelling, and arguing and feeling the victim.  I have a great deal of difficulty dealing with customer service of any kind, if I feel that they are not understanding my needs.  This also lends to my being manipulated by people.  They peg me as intransigent without giving me the benefit of the doubt, without really listening to me and discovering what it is I am trying to say.

Shortly after my first year of middle school I went berserk.  Leaving the confines of a single classroom environment, where I felt protected, and that things were basically the same there were just too many options, too many things I had to "switch back and forth" from on a daily basis.  Very soon, I was taken out of public school and put into "special" school.  (Personally) I feel cheated, because that is when my real education ended.  Doctors and teachers not knowing how to work with me, expected less of me and demanded less.  Even my parents lowered their expectations so far that my real education ended by the time I was in 7th grade.

While I don't know what the answer is, exactly, I felt like they should have understood this rigidity in thought and process and found ways to work with it, instead of fighting against it.  My own father used my rigidity and inability to adapt to change as a source of bullying and demeaning me.  I gave up on myself so far as learning and growing.  I myself started to believe that I could never learn anything new.

For many years before my ACC and ASD diagnoses, I was hypercritical and self deprecating, "Why can't you just be like everyone else? You are broken and stupid..." etc...  I didn't have the awareness or foresight to even understand that I didn't cope well with change, and even if I had, I don't think I would have had the understanding or ability to relate this to parents and teachers.

Parents, I only want you to understand, that if you think you are frustrated with your child's seeming inability to adapt and change, please imagine what it must be like for him or her.  At the age of 52, I'm still unwinding the Gordian Knot of self blame and hatred that I created from childhood.  I still will blame myself for things out of my control.  I'm grateful to have a few people around me that understand this, and remind me of who I am, and that the only measuring stick I need to put myself against is myself.  

Monday, September 22, 2014

Fixations, Obsessions and Special Interests...

While I don't know if it directly relates to ACC folk as well as ASD folk, when I learned of the propensity to see things in patters, be obsessed about "special interest" it answered so many questions I had about my life.

I was diagnosed late in life with both ACC and ASD, and in looking back, the entire set of odd behaviors I had were those common with autism.

Where I grew up my home was nestled in a large wooded nana, my mom's mom would come for visits and birthdays.  She would take me away from the heavily drinking and arguing relatives out into the woods, where we would spend a long time collecting rocks, crystals and other memorabilia.  We had all kinds of quarts in those woods, and even some arrowheads and Native American artifacts.

Well, I remember that I loved the colours and shapes of all the rocks, and crystals and semi-precious stones, and I would collect them.  Mom got mad at me, because (I don't remember the age) I had filled all the shelves in the basement storage area with file boxes filled with rocks and such.  Honestly I remember it being more than a dozen of such boxes.

She made me get rid of all the stones, but I refused and kept a lot hidden in my I got older I would set up what I called "my little altars" with rocks, crystals, and  chachki of all different manner.  I was obsessed with arranging them so they would be in equal order, shape and patters, triangles and rectangles and perfect circles...I have continued to do this all of my life.  I found out after I was diagnosed that being obsessed with patterns and numbers was a typical thing for autistic children.  I was obsessed with the number six and would do everything six times, if I coughed, it had to be six time, if I turned my head to the right (six time) I had to turn it to the left...etc...I have always found visual patterns and number patterns very soothing.

As I began to grow older, the physical patterns (arrangements) didn't hold as much interest in me as did the patterns in my mind.  I craved (and still do) to see everything in balance, kind of like a see-saw perfectly balanced between two children.  I began to read more in my teens and started seeing patterns in books, patterns in words and language.  I became obsessed with languages, words, poetry (specifically iambic pentameter.) When I would talk to others or they would talk to me, my brain would rearrange the words into a rhyme in my head, and get so wrapped up in it I would immediatey forget what was being told me.

I think somehow this ties in with the rigid thinking styles of many ACC and ASD folk.  If something didn't "sound right" to me, I would all out reject what was said for my own version of it, because what they said "just couldn't be true."  As crazy as this sounds this was my childhood and adolescence.  

From about the age of 13 I began to be obsessed with faith and religion.  I am probably the only person you'll ever meet who has not simply studied major world religions, but converted to, practiced and internalized the structure of all of these.  I have always been looking for the "truth" (singular) and find relativism very difficult to cope with. 

My parents were never religious, but they were Episcopalian and so I started going to that church around 13.  My parents didn't discourage me, but if I wanted to go, I ended up having to walk 2.5 miles to the next town (Westwood) to go to the church there.  I still had the imagination and confabulation that is usually only present in early childhood, so I experienced many "spiritual" things that in retrospect were likely manufactured by my imagination, which only served to drive my parents crazy...You see, at 13 my fantasy life was still reality.  Even my approach to faith and religion at that age was very immature.  To be honest, I was looking for a home away from home, from the stresses, from my fathers violent alcoholic outbursts, and more.

Now, many years later I have come full circle and I am reinvestigating my Christian roots, after studying Judaism, Islam, Sikhism, Hinduism, and Buddhism.  

I'm only now really beginning to understand the difference between faith and reason.  We can choose to believe something that cannot be proved rationally but can be experienced spiritually, mentally and emotionally. As is the typical trait, my "spiritual" world, was in reality something locked up in my head, and not so much "lived" as thought.  Having studied multiple philosophies, psychologies and religions, I realize that these were an artificial artifice  I erected in my mind to "protect me from the world."  In retrospect, this is a horrible reason to embrace a philosophy or religion.

I found real faith in the Eastern Orthodox Church, it made the most sense to me, and I'm currently revisiting and re-enlivening my life with this.  I am finally beginning to recognize there are some things that logic and science will never be able to answer. This isn't something I have ever been able to fully accept until now in my life.  My relationship to "religion" and even philosophy was not unlike that of a codependent  relationship.  

At 52, I can honestly say I still don't want to grow up.  More accurately, I still feel as though I am the 13 year old child.  I don't really understand or relate to adults.  I could never imagine myself being a parent, yet friends tell me that I am awesome with children, I think because I feel that I still am one.

Well, this post was more meandering that some of my other ones, more stream of consciousness, but I hope that it was in some way beneficial to my readers.


Saturday, September 20, 2014

Bullying & Benchmarks...when will it end?

My first intention was to write a post about bullying and children with disabilities.  Then the thought occurred to me that I should address it generally.  Our society still fosters bullying of the ID or DD.  If we don't teach neuro-typical children to respect the disabled, and discourage bullying this behavior will go on into adulthood.

I am a 52 year old man, yet I still deal with being bullied on a regular basis.  Even at Health and Human Services I was bullied by a woman that was supposed to be a "social worker."  One essential prerequisite to bullying is the perception, by the bully or by others, of an imbalance of social or physical power. Behaviors used to assert such domination can include verbal harassment or threat, physical assault or coercion, and such acts may be directed repeatedly towards particular targets.

I guess it's asking or expecting too much that in America we educate children and adults about bullying. On a daily basis I read stories about the disabled being bullied (adults and children) and even committing suicide because of relentless abuse.

In my life the bullying started in a bout 5th continued throughout my entire "education" until I finished schooling.  Even in the Archie F. Hay Village School (it used to have the moniker "for the 'emotionally disturbed' " :( ) that was for children with developmental and intellectual disabilities I underwent regular relentless bullying, even from the "teacher's aid."

We were seen as "less then," "not right," "broken bastards," (yes I was actually called that by a teacher's aid.  In such "schools" discipline often involved restraints, or being locked in solitary for long periods of time, my 90 lb body being pinned down by several very large adults sitting on my chest and legs.

In adult life, I have met quite a few people that treat my disability like a joke.  They will even tell me "you just don't want to be 'normal' " (my father bullied me with this all throughout my childhood.)  While there are laws regarding equal treatment of the disabled, in my many attempts at work, I was ridiculed, joked about, scorned, blamed, not given accommodations (mostly because I had no advocate to help me secure them.)

Our society creates these arbitrary benchmarks that if you don't measure up, you're considered abnormal, not worth the effort, and easily targeted for bullying and scorn.

One very important thing that I want parents of ACCers and ASDers to be aware of, is that while you child may be being bullied, they may not have the capacity to tell you so.  I had some language deficit at an early age, but later actually was hyperverbal with a high verbal IQ.  Nevertheless, I was not able to use language to relate my internal experience to my parents (Theory of Mind), and in my case my father was my biggest bully, and I know telling him would have made the problem worse.

As many ACC and ASD children are unable to, and/or unwilling to tell their parents or caregivers about being bullied, it is very important that you keep alert and aware for the signs.  Here is an exhaustive list of things to be aware of:

  1. Unexplained physical marks, cuts, bruises and scrapes
  2. Unexplained loss of toys, school supplies, clothing, lunches, or money
  3. Clothes, toys, books, electronic items are damaged or missing or child reports mysteriously “losing” possessions
  4. Doesn’t want to go to school or other activities with peers
  5. Afraid of riding the school bus
  6. Afraid to be left alone: wants you there at dismissal, suddenly clingy
  7. Suddenly sullen, withdrawn, evasive; remarks about feeling lonely
  8. Marked change in typical behavior or personality
  9. Appears sad, moody, angry, anxious or depressed and that mood lasts with no known cause
  10. Physical complaints; headaches, stomachaches, frequent visits the school nurse’s office
  11. Difficulty sleeping, nightmares, cries self to sleep, bed wetting
  12. Change in eating habits
  13. Begins bullying siblings or younger kids. (Bullied children can sometimes flip their role and become the bully.)
  14. Waits to get home to use the bathroom. (School and park bathrooms, because they are often not adult-supervised, can be hot spots for bullying).
  15. Suddenly has fewer friends or doesn’t want to be with the “regular group”
  16. Ravenous when he comes home. (Bullies can use extortion stealing a victim’s lunch money or lunch.)
  17. Sudden and significant drop in grades. (Bullying can cause a child to have difficulty focusing and concentrating.)
  18. Blames self for problems; feels “not good enough”
  19. Talks about feeling helpless or about suicide; runs away.

You have to voice your concerns to your child and ask direct questions.

“You’re always hungry: have you been eating your lunch?” 
“Your CDs are missing? Did someone take them?” 
“Your jacket is ripped. Did someone do that to you?”

Watch your child’s reactions. Often what a child doesn't say may be more telling. Tune into your child’s body language. Silence is often powerful.

There is also a great Resource at Stop Bullying(dot)Gov if you suspect your child is being bullied.  It offers strategies if your child may be the one bullying as well. (It's not unheard of for an ACC child to bully another.)

Even in my secondary school years ("high school") I was relentlessly bullied, beaten, spit on, had my hair put on fire, was locked in a locker, thrown out of a window, and absolutely nothing was done by the school on my behalf.  I do remember that I was even blamed for being bullied.  I never said a word of this to my parents, there are many reasons a child may not want to share this with their parents or caregiver.  Today there are many allegations of bullying and outright abuse in group homes for DD population, but the world largely remains silent.

The resource I've given at Stop Bullying(dot)Gov is a good start, and there is many more resources out there as well.  I hope we can begin to teach all children that different is not bad, not broken, that differences make up the world's beauty that we live in.  We should not have to measure up to societal standards or benchmarks to be included in society.

Friday, September 19, 2014

Teens Through Their Twenties ~ or transitioning to "adulthood"

There is a well known saying in the ACC community regarding our children.  "Expect their teens through their twenties."  The emotional and social maturity that comes with age in an NT takes much much longer in those with ACC. 

Often times a child with ACC will be largely asymptomatic throughout childhood, until roughly the age of 12-13.  In human neurology this is the time that the Corpus Callosum (in NTs) "revs up" or begins to function faster and more completely, making connections that were not necessary in insular childhood.  This enables NTs to develop a social consciousness and Theory of Mind and also allows for more complicated cognitive processing.  Those of us born cACC (completely without the Corpus Callosum (CC) and those of us with pACC (a partial CC) don't have the benefit of this structure to aid us in this normal part of human development.

As the brain itself is still quite plastic until the early to mid twenties, our neurology is still growing and migrating throughout the brain and body making new connections.  So even those with collosul disorders can do a great deal to adapt to the environment, but we can never grow a Corpus Callosum.  It is at this age (12-13) that many ACCers are seen to lag behind our peers, in terms of social development and cognitive abilities.  Our neurology continues to grow and adapt through our early to mid twenties, but without benefit of the CC our progress does not appear like that of an NT.

If the ACC child is prone to confabulation, it is likely (as it was in my case) that said confabulation continues throughout adolescence.  In fact in my case it only became more pronounced.  I honestly had very little grasp on the difference between fantasy and reality until my early thirties.  In the unaware eyes of their parents, they may seem to be liars, rebellious, "in their own worlds" and just not "going with the program."

It was also at this age (for me) that I myself realized I was not like other children.  My isolation only grew stronger.  I remember being as old as 12 and having a profoundly rich imaginary life.  I also failed to recognize that other children began to separate fantasy from "reality" and take a more objective and social role in the world.

By the age of 18 I was expected to "get a real job" and function in the world.  Out of school, still living with my parents I took County classes and became an EMT.  I could learn all the modules well, in fact I aced them and the examinations.  Yet, when it came time to generalize these skills and live them in the real world, it was apparent to me that I could not do so.  I remember (and still experience often) that my 24 hour day is in many ways similar to an NTs week (or even month.)  I had a very loose understanding of time, and really no concept of personal responsibility.  Well into my twenties and early thirties I was still looking for "who was going to take care of me."

While my own parents had limited access and knowledge to resources that could help me, they also came from the generation of shame regarding disabilities.  From a very early age, my father continually shouted at me "why can't you just be like everybody else?"  In my twenties I actually began regressing in social skills and cognitive function, without the umbrella of my parental guidance.  My parents not understanding eventually rejected me, and we are completely estranged to this very day.  

Without early intervention (or even later intervention and management) I began to be dragged through the mental health system.  Not knowing about my ACC nor my autism diagnoses, in 25 years I was (jokingly) diagnosed with nearly every major mental illness  in the DSM, and by my late twenties became suicidal.

Flash forward to all these years later, I have been the patient of the chief of psychiatry at one location for six years.  After my ACC and ASD diagnoses, she observed and worked with me closely.  The only other co-morbid diagnoses that "stuck" were an organic mood disorder (depression), ADHD, and PTSD.

I've worked very hard at relieving myself of the bitterness and anger of having been put through the mental health wringer, but sometimes it still gets the best of me.

So why, you may ask, am I telling you my story?  Not for sympathy, rather that you understand your adolescent child while adult in body, is largely still a very young boy or girl.  As neurologists have said, expect their teens throughout there twenties.  They will take more time than an NT, and even at the point of "maturity" may not look exactly like what you expect.

My own parents expected their cookie cutter model of adolescence and adulthood, and it only served to cause myself (and them) more pain and anguish.

It is important, that you as parents of ACC children begin in childhood to plan for their adolescence.  Who knows, you may be one of the lucky ones in which your child does garner a good amount of maturity in earlier age, but there is definitely no guarantee  of this.  Early intervention is not just for early childhood.  You must begin to plan your child's adolescence and adulthood resources now while they are still young.  You can make a difference!

It is too late for me, but it is not too late for me to make that difference in all of your lives.  It gives me a lot of pleasure and a measure of peace knowing that I am contributing to the well being of young people like I was, to hopefully create a better outcome in their futures.

If you find A Boy With a Whole in His Head beneficial in any way, I would ask that you share it with other ACC adults, parents of ACCers and educators and get the word out.  This would be much appreciated.

~Joseph Galbraith

Thursday, September 18, 2014

ACC is...

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

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

Confabulation, Conflation & the ACC thinking process

The mental processes of those with ACC, can more often that not manifest behaviors seen in childhood, but these will persist into adulthood.  While not all with ACC have issues with confabulation it is nonetheless a common enough occurrence in our thinking processes, which if not understood by those around him or her can lead to blame, anger, accusation and false judgement of the child or adult with ACC.

Confabulation  is a memory disturbance that is the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive. Confabulation is distinguished from lying as there is no intent at deception and we are unaware the information is false. Although we can present blatantly false information, confabulation can also seem to be coherent, internally consistent, and relatively normal. Those of us who confabulate present incorrect memories ranging from "subtle alterations to bizarre fabrications"  and we have no doubts as to our  recollections, despite evidence to the contrary.

These event can be provoked or spontaneous. A provoked confabulation represents a normal response to a faulty memory, and can become apparent during memory testing, where a spontaneous  confabulation does not occur in response to a cue and seems to be involuntary. These are relatively rare, but are more common in cases of ACC and may result from the interaction between frontal lobe pathology and temporary global amnesia.

The majority of research on confabulation centers around children. NT children as well as ACC are particularly susceptible to confabulations based on their high suggestibility. When forced to recall confabulated events, children are less likely to remember that they had previously confabulated these situations, and they are more likely than their adult counterparts to come to remember these confabulations as real events that transpired...accept in the case of Agenesis of the Corpus Callosum. Research suggests that this inability to distinguish between past confabulatory and real events is centered on developmental differences. Due to underdeveloped encoding and critical reasoning skills, an ACC person's ability to distinguish real memories from false memories can be impaired. 

When this thinking process is not expected or understood, parents of ACC children and friends and family of ACC adults can react in a negative, dismissive or accusatory manner.  Needless to say, that does wonders to destroy self esteem and confidence in those of us afflicted in this way.  Not everyone with ACC confabulates, but it has been a major part of my life for as long as I can remember.  Because of it I was bullied, beaten and blamed for so much that was not my fault.

I usually give the following example, because in retrospect, when I learned of my ACC it jumped out at me and made itself really obvious:

Mother would ask "did you take out the garbage?"  In that instant I would have a visual memory of my taking out the trash and would tell her "yes I did."  She would look and see the trash was still full to the top (even in the same room.)  I could have been remember another time I took out the trash, or simply confused the image in my head with reality.

This also happened (in retrospect) when I was asked to brush my teeth, and "did you do it?"  Thing is, they never really checked to see if I had indeed done it.  I have never, to this day established a consistent habit of teeth brushing.

This sort of thing still happens to me today.  The difference is I've been able to educated people around me, and they can see what is actually happening, and it diffuses an often terrible situation.

Today I have memory issues that look a bit different but are nonetheless still really troubling.  I can think about preparing a meal to eat, and think I've already eaten it. I've done this, and not eaten anything until 5 or 6 in the afternoon, because all of the sudden I was sick with a headache and stomach ache, the only clues that I haven't really eaten.

Likewise you and I can have a face to face conversation, and if asked to recall it just a few minutes later, you might find a strikingly different conversation than what you remember us talking about...this leads into explaining conflation:

Conflation occurs when the identities of two or more individuals, thoughts, concepts, or places, sharing some characteristics of one another, seem to be a single identity; the differences becoming lost.  Conflations are of two types "congruent" and "incongruent."

Congruent conflations are the more commonly used in everyday life in speech and language, for example: "look who's calling the kettle black?"  The two ideas "look who is talking" and "calling the kettle black" are blended together to mean the same thing.  This type of conflation is more "normal" and understood in context.

On the other hand incongruent conflation occurs when the two thoughts or concepts do not mean the same thing, but share a common word or theme. For example, "a bull in a candy store" can be formed from the expressions "a kid in a candy store" and "a bull in a china shop". The former expression paints a picture of someone who is extraordinarily happy and excited, whereas the latter one brings to mind the image of a person who is extremely clumsy, indelicate, not suited to a certain environment, prone to act recklessly, or easily provoked. The conflation expresses both of these ideas at the same time. Without context, the intention is not entirely clear.  Yet for someone with ACC, we may not be aware we are doing this, and yet the concept or thought or memory we hold in mind makes complete sense to us, even if it confounds the listener.

Idiomatic conflation has been used as a source of humor in certain situations. For example, "A bird in the hand will get the, wait...The early bird is worth two in the well, that's the idea" by combining two popular expressions.

Yet with ACC not only is there confabulation, but these confabulated memories conflate with actual events or legitimate memories.  And this could be pointed out to the person or child with ACC and we just cannot accept it, even if you present "proof" to us that we are "wrong." 

Think of it this way, what if your very thoughts were constantly challenged and you were told they were unreal? This likely would be no less anxiety provoking for an NT than someone with ASD or ACC.  We start to believe we are less than other people, and it is drilled into our heads that we "are liars" (or worse, my own father calling me a psychopathic liar) and being beaten and abused because of it.  

Recently, I have come to the conclusion that I had confabulated and conflated events in a dear friends life.  Perhaps with something I was told or explained, the memories I had whether real or false blended with real life events.  This lead me to accusing a friend's spouse of abuse.  And to this day, I'm absolutely sure she told me what she did.  But she has no reason to lie.  This caused us a real tension in our friendship, that I doubt we'll ever recover from.  Yet, even now, I could swear to what "I was told", but several sources have assured me the information is incorrect.

Now, for the NT out there, or the parent of an ACC or ASD child that confabulates and conflates, please, just imagine for one moment what it must be like to live with this day in and day out.  A few adults with ACC that I know, we call this the "dirty little secret of ACC" because there is so much shame and invective poured on us by others because of this, we internalize the shame and beat ourselves up.

I'm still researching ways to "disarm" this phenomenon.  I know that it will always occur, and that stress brings it on more readily, but I can't help thinking there must be a way to bring it to our attention where we can actually do something to correct it.  My closest friends that are aware of this tendency in me, I have given them free reign to point out to me when, in their eyes, this seems to be happening.  It can be frustrating for the NT, because they will present to us "evidence" of our misthinking, but we cannot accept it.  WHO can accept that they cannot always trust there thoughts and memories.  So, parents of, and friends of those with ACC, please be kind...please be careful when wanting to blame and accuse us of something that we clearly do not understand is occurring.

It is one thing talking about this subjectively, but even today, I am mostly completely unaware when confabulation occurs, until I run into the "brick wall" of facts given me by situations or peoples....I am grateful for those in my life that have come to understand and work with me and not reject me because of these differences in my thinking process.

Sunday, September 14, 2014

Rehearsed vs Live in SoCal: Learning to *pass* in an NT world!

I have been reading a lot on the subject of adult autism lately.  While there isn't a lot of literature on adult ACC there are some things observed in both our populations. What is important for me to relate today is how adults, learning how to pass as an NT, how to fit in and not be noticed.  One unfortunate result of this is how the skill to pass as "normal" has many of us being misdiagnosed with various disorders, (that may be co-morbid but masking the disability.)  This is why many of us don't receive an accurate diagnoses until later in in point I was 46 when the neurologist discovered my ACC and I was diagnosed with an ASD.

I've had to really work on my bitterness.
It's well known that early intervention can improve outcomes, the earlier on life one recognizes ACC or ASD the sooner we can teach skills to cope or even thrive as a person with a disability. I know had the doctors in my childhood had access to the knowledge about ACC and ASD we have today, my outcome would look vastly different.

The way ACC and ASD kids learn best (generally speaking, of course) is by rehersal.  Actually being prompted to perform the task over and over (far more many times than for an NT.)  Such things have a more profound and permanent impact on children's brains, than their adult counterparts.  We know today that the nerve cells in the brain and spinal cord continue to migrate and grow well into our twenties.  The brain and nervous system is by its nature more plastic, or adaptable during these years.

The downside of rehersal learning is that this is how we learned to pass, or to imitate NT behaviors, even while we don't really "understand" why we must behave this way.  So on the surface, we get comments like "you don't look (insert label.)"  But how would they know?  The same is true for many medical professionals that are not at all versed in ACC and/or ASD.  Their attention passes over HFA (high functioning autism) and the need for any ACC diagnostics.  We go through the world like a billiard ball, bouncing off the walls, maybe even learning to cope outwardly, but inwardly we blame ourselves for how we are in the world because we have not been diagnosed yet. (Speaking of the many diagnosed in later life.)

This rehearsal thing has another side too.  I have attended and done very well in various technical schools, the latest was becoming a Notary Public.  But at no time was I able to translate these skills into a real life situation.  The "conditions" present when I learned are different when I am "working" and I can't generalize them over.  Many times adults with DDs perform highly on cognitive or social testing in a doctors office, while failing to be able to translate that into real life situations.  Fortunately there are more doctors specially trained to identify ASD traits, for example, despite the presence of all kind of coping behaviors.

In general your typical GP-PCP knows little to nothing about ACC or ASD, and how best to relate to us and worth with us in a way we can understand and utilize.  Having said that, things are progressing, just not as rapidly as I'd like to see.

Lastly, I just want to mention so that you understand, how exhausting it is to pass, we have to work very hard to do so, it is foreign to us, and I can say personally, a major source of irritation.  Imagine going through life feeling one has to apologize, not even for what one does, but who one is?  I for one, work diligently at being myself and shedding myself of the expectations of others.  One of the most healing gifts I could give myself. 

Saturday, September 13, 2014

Metaphor vs Meat & Potatoes...the bane of literal thinking...

an example of literal thinking
In written form, I have less of issue with idioms, metaphors, euphemisms, puns, hyperbole, sarcasm, exaggeration and implied assumptions. However in communicating verbally with people it becomes really obvious that I can misunderstand. Even so, if I lack sufficient background information I can have a lot of difficulty even in written form. Just what is literal thinking, and how does it express itself differently than the thought processes of an NT?

There are two different layers to the meaning of words, their
  1. literal definitions
    & their
  2. intended meanings...
The literal definition of the words/images in question, what a thing actual is, while the intended meaning is where we get the term "figure of speech" from: a meaning different from the actual meaning of the words themselves. Focusing on the true/definite meaning of words is at the crux of literal thinking.  Those of us who process thought this way have difficulty in interpreting this second or figurative layer.

Those ACC and ASDs that are literal thinker have three distinct differences in their thought process in regards to

  1. auditory processing, 
  2. thinking in pictures, 
  3. & not distinguishing the whole from the part.
Within my own brain I have an auditory processing delay, revealed during didactic hearing studies.  I would wear stereo headphones, and they would speak unrelated words in both my left than my right ear.  It was revealed that I could not (neurologically) hear out of (process) different words out of my both ears, I would only hear one side, and usually it was the right side.  As well, there was a significant audio delay between the spoken word and my hearing of it.  This significant processing delay is apparent in many with ASD and/or ACC.

How it works is like this:
Language get's inputed (heard) and the length of time it takes to process non literal meanings is so long that the other individual is already on to the next word or sentence.  Given sufficient background information, this is why we can pick such things up in written text, because we are not going through the auditory processing system.

We also think in pictures.  We will even take the words we hear and translate them into "visual media" of the "thing." It is a picture, static, therefore literal, "what the thing is."  In order for us to think and understand the second layer of meaning, we have to translate words into pictures, change the picture and translate it back into words. Just consider the phrase "scared the hell outta me." It conjures up darkness and medieval images of Dante's levels of hell.  Imagine getting that out of your mind!

We also have trouble discriminating the whole from the part.  We cannot see the forest for the trees.  We take all these many pieces, like one would a giant jigsaw puzzle and start trying to piece the information together bit by bit, rather than looking for the intended (figurative) meaning within the context of the entire conversation.  We often can't back away from the details.

For example, let's take the English idiom "cool your jets!"  There is definitely only one intended meaning and that is to calm down.  The thought process I go through for just this might look like this:

"Cool my what? I don't have jets?  How hot are they and why do they need to be cooled? Where are my jets? Why do they need to be cooled in the first place?  Jets are cool! I wish I could fly in one! You know the T looks like a (jet) but the the J looks like something else!  What was the question?"

This all happening in two seconds and you're already saying something else...I get frustrated, felt misunderstood (because I can't "catch up" and communicate back to you what I'm thinking/feeling)...the process is utterly exhausting for me.

Some of us find figurative speech really upsetting  It confuses us and can even create unsettling visual imagery. Often others will make fun of us and mock us because we misunderstand.  We can even receive figurative speech as if it were a lie. Both in school and on the job we get pegged for "bad behavior" because we follow instructions literally to the word.

Please don't laugh at my misunderstanding what you said, and never use sarcasm. It can be stressful when you're the only one who doesn't get a joke,  at least take the time to explain the joke so I don't feel left out.

A day in the life of Joseph Galbraith...

Wednesday, September 10, 2014

The Triad of Behavioral Flexibility

Something I have always had tremendous difficult with is behavioral flexibility; something common to both ASD and ACC.  The most successful people in society have the most behavioral flexibility.  While I have compensated and adapted many things over many, many years, I still remain rigid in regards flexibility.

What makes the situation even more untenable is the thought by others that I'm "just stubborn" or recalcitrant.  To be fair, I can be stubborn at times, like anyone else, but this lack of flexibility has more to do with executive function, or the lack thereof. 

Behavioral flexibility is like a camera tripod...if one of the legs is off, then the whole thing is unusable and out of balance.  Those three "legs" are attentional shifting, rule switching and response reversal.  At any given time, one or two legs of the tripod may be working, but the other(s) are not.  While I can't speak for anyone else, in me this produces brain lock, or causes me to freeze, to be confused, and emotionally raw.

Attentional shifting is the process of directing attention to a task to increase the efficiency of performing said task, and includes inhibition to decrease attentional resources towards unwanted or irrelevant inputs.  In the real world this most often has to do with task switching.  This is one reason I always had great difficulty when I would try to work in a job.  In any given job, circumstances come up that one might have to change their activity, adapt and focus on a new activity, then perhaps go back and finish the original task.  This is not something I can do easily at all.

"Multi-tasking" is a myth, not even NTs can focus on more than one thing at a time.  What an NT is good at is task switching, and the rapid movement of attention from one task to another then back again.  Nevertheless attentional shifting remains very difficult for me.  I've learned some ways around it in life, but even then they are not a consistent part of my life.

I'm often so invested in where my attention is, that any attempt to redirect it is met with anger, aggression, and confusion. 

Rule switching is similar...The way we do things, "use this rule for division, not this one", "I'm late for the appointment, so I have to drive on the freeway today, not the side roads."  I can think of the example of when I used to drive for morning coffee, I would always take the exact same route, and if I couldn't I simply would not go to coffee, because it went "against the rules."

Again, response reversal is also closely related to rule switching.  An example of impaired response reversal would be doing the same action over and over expecting different results.  "This didn't get me what I wanted, so let me try this other thing."

And related to this tripod is the general concept of cognitive control; the ability to recognize and understand the context in which an event is taking place and select the right response(s), to alert us to any contingencies in our planning of our task or conflict between two different sets of information. 

For example; driving in a residential area should lead to a change in behavior; the driver should slow down and become more careful, the light turns yellow, we have to either get out of the intersection or stop.  Cognitive control is the first thing to go out the window when the tripod is ineffective.

In all these areas these are common experiences to many ACC and ASD folk.  The overwhelming attitude we get from NTs is that we are "doing" this, we are willful, stubborn, recalcitrant.  It simply is not true.

This is so much a part of my normal process that when I moved to my new home a few months ago, I could not brush my teeth.  Because it was a different surroundings, different arrangement, my schedule had changed.  While I've always had trouble with my ADLs, and particularly brushing my teeth, the six years I spent in my previous home I was able to keep a semi-regular habit going, but just because I changed location I "lost" that habit.  Even when I would go away from home overnight, I could not brush my teeth.

That may be a gross example, but I want people to know how real this is and how it effects us.  This goes for any sort of daily activity, unless prompted I will rarely do it, and regardless won't do it consistently...all this is typed up with cognitive control.

On an average day (making the number up) a person might have 10 thousand thoughts in their head, multiply this times one hundred and that just begins to approach my mental processing.  When I am overwhelmed with stimulus and with cognitive pressure I can only back away, or shut down, or react negatively.

Cognitive therapy (talk therapy) has limited success with ACC and ASD folk, but some years ago I came across Dialectical Behavior Therapy.  DBT is a therapy designed to help change behavior patterns that are not effective, such as self-harm, suicidal thinking and substance abuse. This approach works towards helping people increase their emotional and cognitive regulation by learning about the triggers that lead to reactive states and helping to assess which coping skills to apply in the sequence of events, thoughts, feelings and behaviors that lead to the undesired behavior. DBT assumes that people are doing the best that they can, but either are lacking the skills or are influenced by positive or negative reinforcement that interfere with one’s functioning.

DBT has by far been the most helpful of all the tools in my kit.  DBT can be learned in therapy, in groups, or by individuals.  In fact there is an outstanding book, and The Dialectical Behavior Therapy Diary, to help make these skills a (more) consistent part of daily life.  For adults with ACC and/or ASD I recommend this above any other book(s), the skills you can learn are priceless.  When these skills are mastered behavioral flexibility can come a wee bit easier (at least in my experience.)

I hope this post has helped you peek for a bit inside my head, inside my life.  Hopefully my experience can direct you to find your own answers in life.



Saturday, September 6, 2014

Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

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, September 5, 2014

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.


Sunday, August 31, 2014

"it's all Greek to me" vs "hammer down the crooked nail"

I amused when I consider, it took the doctors fourty five years to find my Agenesis Corpus Callosum... I have always known that I saw the world differently than other people, but, how the hell was I supposed to tell them that?  That's like I speak Latin, and you speak Greek, and further more I think in Hungarian (I dunno, just picking at languages, to make my point lol.)

What I don't find amusing at all, is the we live in a society that spouts individualism, yet if it doesn't look like "my" individualism, than it's wrong.  Rather than discover how to speak a child's "Greek" to use the above metaphor, and to understand that he is thinking in Hungarian on top of instead we hammer down the crooked nail.

Our society is becoming increasingly focused on children passing a standardized test, yet not teaching them how to think for themselves.  One also has to consider that if a child does not fit into the mold society cuts out for them, they will be ostracized as the square peg in the round hole.  Is this really the legacy that we want to pass on to our posterity?  Those that society cannot hammer down into submission, are then shamed and hid in the darkness (of their minds, and of the world.)

This way of thinking finds its way into many different aspects of American life.  The disabled are seen as burdens, as not benefiting society, as not capable of doing so.  We are marginalized, and hidden; when we demand equal rights, we are told "we shouldn't get 'special' treatment."  And for those that have a "hidden disability" (it cannot be seen with the eyes) Americans often hold even more contempt...we use chemical to drug them into submission, with very little actual attention to the person or their disability. If this doesn't "work" we reject them, jail them, institutionalize them.  I am not only referring to mental illnesses, but also to developmental disabilities, learning disabilities, congenital brain defects and the like.

I can not even tell you how many times I have been told by people "you just don't want to try hard enough, there is nothing wrong with you", and other some such bullshit.  Oh, like I have 200,000,000 nerves missing from the center of my brain...yea, noooooo problem.... I mean what the fV<K, seriously?  I tortured myself for too many years, trying to "fix" myself, when I have never needed 'fixing' ."  I needed to accept the wonderful person I know myself to be, that I will never be  what my parents, society, or any "individual" wants me to be...I can only be myself.

What is even sadder, if all these were not shamed and hidden away by society, not only would they "fit in" or even thrive, no, someone might hold the cure for cancer in their mind and experience.  Someone else might solve the energy crisis and global warming in one swoop.  Someone might fill the hearts of their loved ones, with pride, and joy, and unconditional love.  Someone might smile.

All these many souls, send to the dark, forgotten places of society...they are our mothers, and fathers, brothers, and sisters, aunts, uncles, cousins, friends, or they should be.

The Victorian Age mentality in the United States (and many other parts of the world) is perverse, oppressive, unfair, dangerous to society on so many levels I cannot even count.  George Orwell 1984...from MY point of view, anyhow.

I no longer have to imagine what it might have looked like, had my condition been detected and I'd received early and continual intervention, ( not that my family didn't try, but information and resources were not available to them), what I might have become in life...I don't have to imagine, because I'm beginning to make a difference in the lives of parents with children born with ACC, and with those of us born with the very least, an ear to hear them with, so that they can be heard.

Over the next few months I want to do more research into this area, taping both sociological and psychological studies, as well as national statistics, particularly in regards to those of us with "hidden" disabilities, etc...should be interesting!

~A Boy With a Whole in His Head

Thursday, August 21, 2014

Best Video on Aspergers I've Ever Seen

Hands Down!

This is put out by the Aspergers Experts two young men on the spectrum, and is by far the best thing I've ever heard on it, it fits with my experience directly:


You can find them at