Tuesday, September 3, 2013

Sawing Logs and Building Bridges...

I've long wanted to write a post in more detail about the subject of sleep in regards to living with Agenesis of the Corpus Callosum.  Again, the information I share, is tempered by my personal experience, and I recognize that everyone with ACC "shows up the same but different" (our experiences and abilities/disabilities in re: ACC are unique in each person that has the condition, although certain traits and neuro-cognitive expressions are pretty much seen in everyone with ACC, although some are loath to admit this, even to themselves.

Many studies are showing the importance of sleep even in the neuro-typical brain, let alone the ACC brain.  

Durmer and Dinges study Neurocognitive Consequences of Sleep Deprivation immediately comes to mind, although there are many more studies, and particularly those in regards to memory, such as the Sleep-Dependent Learning Review 
and Memory Consolidation study by Walker and Stickgold.   More recently UCLA scientists discovered that the sleeping brain behaves as if it's remembering something.  The exact same memory patterns observed in live scans for a given task or even are "rapid fire repeated" throughout the night.  Sleep and dreaming are the brains way, it seems, of consolidating and organizing, then coding for retrieval, our memories.  

Getting back, for a moment to neurocognitive effects of sleep deprivation, keep in mind the studies are referring to the so-called "normal" (average) human  brain. Within 24 hours of sleep deprivation a "normal" experiences rapid cognitive and memory decline, decompensation of the brain's executive and regulatory functions.  If I were to remain awake for 24 hours, I would be subject to severe Transient Global Amnesia, the inability to regulate emotion, attention, energy...I would begin to confabulate and become almost stuck in my imagination, and even out and walking around it is as if there is a "dream" overlaying every waking moment, distorting it.  At worst I can have a complete meltdown and TGS usually goes along with that.  

Sidebar: On the subject of meltdowns:
One of the most common misconception about meltdowns is thinking it an everyday temper tantrum.  The parents or caregivers of, or adult with ACC and/or ASD are often scorned by members of the public as being unable to control the individual.  It is important to point out that while the physical aggressions associated with this type of escalation and meltdown appears similar to a temper tantrum, the two events are completely different.  
 A common childhood temper tantrum usually is the result of a person, typically a toddler, either being deprived of something that they want, having something taken away from them.  It is an attempt to manipulate an individual, usually a parent (or a caregiver or another toddler), into getting their way, and therefore requires that person to be actively involved in the tantrum.  If the parent is able to completely disengage from being the “audience,” there is no benefit to sustaining the tantrum.  Likewise, if the parent gives in, the goal is achieved, the tantrum was successful and there is no need to continue.  During the course of a tantrum, the toddler may pause the disruption to check to see if the parent remains engaged.  They may be distracted from the tantrum by being offered an attractive alternative.  Sometimes the threat of discipline is effected at thwarting a tantrum, especially in older children.  Finally, despite the fact the tantrum may appear reckless, the child is seldom out of control.  They are not likely to harm themselves, others, or objects that they “treasure.”  If an injury occurs or they damage a favorite object, they usually will be “shocked” out of the tantrum and immediately will become focused on what has just occurred.
Since escalation/meltdown behavior is not a form of manipulation, an “audience” is not required, either to precipitate or continue the behaviors.  The individual will not check for engagement, and the participation (or lack thereof) of the caregiver is of no concern. It is a reactive mechanism that causes the individual to lose control.  Even if the event begins as being goal-oriented, once the incident escalates to meltdown, obtaining the goal will not quell the behavior.  Likewise, if an alternative is offered, even if the alternative is highly desirable in most circumstances, it may not be acknowledged during escalation and meltdown.   
Literally, during the course of escalation and meltdown, the person with autism is losing or has lost control.  They may even know that they have lost control, but are unable to regain control on their own.  You may need to help the individual regain control.  
Remember: attempting to resolve the meltdown by threatening disciplinary action is both ineffective and not appropriate.  The individual with ACC or ASD will not have the ability to understand the consequences, and even if they can, they will lack the ability to alter their behavior.  In fact, such threats may very well add stress, further aggravating the overstimulated individual and worse an already deteriorating situation.  This is also true of just about any physical interaction with the patient, even gestures intended to be reassuring.  
During meltdown, the person is not able to process how their actions and behaviors affect others.  In other words, if there is a chair in front of them, and there is a desire to throw the chair, they will throw the chair.  While they may not throw the chair purposefully at an individual, they will also lack any regard of individuals who may be in the line of fire.  This is true, even if the bystanders are regarded as friends.  They will not be able to realize (at that particular time) that throwing the chair may cause serious injury if it strikes someone. Unlike a temper tantrum, the individual engaged in a meltdown will lack any protective instinct to avoid injury to themselves as a result of their actions.  If injury does occur, it will either have no effect on the meltdown, or it will increase the severity as a result of the additional stimulation.  Favored objects or things will not be avoided, consciously or subconsciously, from becoming damaged in the wake of the event.      
Ok, now...(just had to get the above point out...I appreciate and acknowledge Autism EMS from where I got the above quotes. )

As my last Neuropsychiatric doctor observed, "normally they would code (DSM) my presentation as dementia, but that can hardly be appropriate as dementia is seen as a loss of past function.  The memory, cognitive and sensory decompensation is atypical in that he has never fully enjoyed unhindered use of these functions." (He was here speaking of me "at my best".)

It is true, I benefity greately from simply being constanly prompted, and I don't like the term, but really "nurse maided."  If there is another person around me who can provide me cues to remember and practice my ADLs more consistently, and keep me "grounded", I can get tons accomplished, but without prompting and direction I too easily loose my way.

Now...imagine my brain on one day without sleep.  I've been told, it is more like what you would experience after 72 hours of (actual) non-sleep.  Dementia, psychosis, paranoia, fear, mental and emotional paralysis, stop eating, stop bathing, stop body care, live 24/7 in a fantasy in my head and not be able to get out, admission to a psych ward (which, thank god has been a very very long time ago now), abuse by police or those in authority not understanding what is going on with me (why I always have a MedAlert on me at all times now.)

I don't know if I actually coined the term, but I started using it some 15 years ago...I mean Sleep Hygiene.  What this is, is thinking about our sleep, much the same way you would think about bathing the body and keeping it disease free, or logging of your computer so you can defrag the hard drive (consolidate your memories).  

As it turns out, we are building bridges (literally synapse) in our sleep, regulating memory, emotional, activating the immune system, healing the body, all of these go on hyper-drive when we sleep.  

It has also been shown that in those with ASD (autism) when we study their brains (live) there is a much higher metabolic process as well as many more areas of the brain firing off and exhausting neural energy, than seen in the neurotypical brain.  I know this is true, just by personal experience.  I am extremely sensitive to over stimulation, and my brain goes on "hyper alert" mode, and this is extremely exhausting.  Also just navigating social situations is the same.  This is not a "psychological" issue with anything social, it is the result of my wiring not being able to easily interpret the signals and cues others are always easily giving and receiving.  

A two hour meeting say, and especially if I don't know everyone well, will lay me out for a couple of days, so stimulate and overload me that I will hide, it is either that or meltdown.  

My skills of meditation and the like have made an (the) enormous difference in my life, and even at my worst today, I am better than my best of yesterday, and so I am pleased.

I want to say to parents of ACC children: please start young and instill almost "ritualistic" repetition and discipline with sleep. When your child is old enough, explain to her/him how important sleep is for our special brains to perform their magic.  Sleep is far more important that is being regularly acknowledged publicly by the medical community.  And for us, it is MORE important than THAT....(off my soapbox now.)

I say the above, acknowledge the problems many with ACC have with sleep.  I have had, and continue to have lifelong sleep issues, but I work very hard to make sure I've got enough. (by the way, including my daily nap, I absolutely need about 10 hours, to function like a normie.)  Even my pop pop took naps throughout his life.  UCLA has shown that an afternoon nap markedly boosts the brain’s learning capacity, take a look! (oh, and give yourself a 20 minute nap daily, (if you can't you can train yourself to nap, it works !!! )

Well, I gotta go build some bridges~~~



  1. Hey Joe, Great Blog I must say. My name is Chris and I am a 24 Year old with AgCC or Partial agCC(Can't find the damn results of the MRI I had at the age of 15). I am of above average intelligence(129 IQ), yet in day to day life that means crap.From the age of 4-14 I was made fun of a lot, (mostly just for being the fat kid during my middle school years). My high school years still carried that stigma a bit but people were more mature about it. COLLEGE was a blast. clean slate baby! I made friends, had normal college experiences that you'd expect only a drunk party boy to have, but being the dude who walks drunk women from parties to their dorms got me "nice guy" favors from sober friends. +1 Chivalry? I was a military nut in my younger years but found "spirit" early at the age of 16 and have been spiritual ever since. In spiritual terms, think of our right and left brains as duality, we lost that bridge... we are literally levitating between duality to function "normal". ITS A SUPER POWER! Currently, I am still receiving my education, Being a part time Teachers aide, Reiki and reflexology practitioner and summer camp counselor. It amazes me the varying levels of function people with our condition have. I don't know about you, I've never been a math or science guy, but i loved me those history, philosophy and religion courses. The only frustrating thing is that I cannot hold an intelligently flowing conversation. What I am typing, in this long paragraph would come out as a few sentences followed by lots of pauses to get those jumbled thoughts in line. Can you speak publicly as well as you type? I can't. I would love to talk to you more so we could compare "limits", even though the possibilities are endless. For example, I am the weird shy guy, that has this quiet but commanding and comforting presences about me, so even if I am quiet, people like to talk to me and have me offer them advice(played counselor and advisor most of my life).

  2. you're awesome Chris! I am the same way, I "wax elloquent" in writing, bu t if you were to ask me the same sort of things within social context I can't get words out. I speak extremely well, one on one, but put me in a room with just a few more than that I can't function.

    From a young age, I new I was different (even before my ACC and ASD diagnoses), my way of talking is more of a monologue, not that I can't take in what you have to say also, but the "deeper" a conversation goes, the less able I am to go there. My parents (Quite literally) told me STFU hundreds nay, thousands of times in a month, because, I guess partially, I always felt that if I couldn't get my thoughts "out" as I was having them I would forget them. (turns out with ACC I was right.)

    I would be most happy to carry on a conversation with you, either chat, or someday even phone (if that works) if I can be helpful. My life's purpose now, is to try and help others like myself, not have to go through the hell I did, there are so many more resources and such today that didn't exist when I was your age. In that sense you are very lucky. You can reach me at justaguy (at) anyoldjoe (dot) info by email, (if you like) and we can go from there. (note I changed the (.) and the (@) only to avoid mail robots on the web that steel and spam email addresses.

    Philosophy/psychology/spirituality/neurology/religion have **always* been my happy interests.

    Thanks for writing, and please, write me if you wish