Wednesday, October 29, 2014

Central Auditory Processing Disorders and ACC

Understanding my CAPD opened up an entirely new world for me, and it explained a lot of what I have been experiencing my entire life, but could not put language to. Unlike the ability of the auditory nerves to hear pure tones in a quiet room CAPD is concerned with how the brain processes this stimulus.  

All children and adults with this problem can pass a standardized hearing test, and so it can go unnoticed and lead to many problems.  I discovered my own issues with this when I went through two week long neuropsychiatric diagnostic testing sessions.  Specifically a test was done that I believe was called a didactic hearing test.  How this test is performed is interesting.  The subject wears stereo headphones, and two completely different words are spoken into the left and right ears.  I know that they also discriminate with the type of words and language, like nouns and verbs etc...

In my case I had no processing error when words were spoken individually to each ear, however when words were spoken into both ears simultaneously I could not "hear" one of them.  The doctors determined that my brain particularly chose to process the right side stimulus almost all the time under these conditions.

It was actually quite distressing to take the test.  They pressure you, and it gets more difficult, and at a certain point I underwent real physical pain and extreme anxiety.

CAPDs are common with those who have a collusul disorder, also found commonly in ADHD and ASD as well.

Those with CAPD do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. Subjectively, I can tell you that if there is any kind of background noise, especially other conversations, I get easily confused and frustrated trying to understand what I am hearing.

Some symptoms of CAPD are:
  • Being easily distracted or unusually bothered by loud or sudden noises
  • Noisy environments are found to be upsetting
  • Behavior and performance improves in a quieter setting
  • Difficulty following directions, whether simple or complicated
  • Reading, spelling, writing, or other speech-language difficulties
  • Abstract information is difficult  to comprehend aurally 
  • Difficulty with word  problems in math
  • General disorganization and forgetfulness
  • Conversations can be hard  to follow

There are five main areas that affect those with CAPD:

  1. Auditory Figure-Ground Problems: when you can't pay attention if there's noise in the background. Noisy, low-structured environments are very frustrating.
  2. Auditory Memory Problems: Difficulty remembering information such as directions, lists, or study materials. It can be immediate ("I can't remember it now") and/or delayed ("I can't remember it when I need it for later").
  3. Auditory Discrimination Problems: Difficulty hearing the difference between words or sounds that are similar (COAT/BOAT or CH/SH). This can affect following directions, and reading, spelling, and writing skills, among others.
  4. Auditory Attention Problems: The inability to stay focused on listening long enough to complete a task or requirement (such as listening to a lecture). Those with CAPD often have trouble maintaining attention.
  5. Auditory Cohesion Problems: When higher-level listening tasks are difficult. Auditory cohesion skills — drawing inferences from conversations, understanding riddles, or comprehending verbal math problems — require heightened auditory processing and language levels. They develop best when all the other skills (levels 1 through 4 above) are intact.

CAPD is similar to developmental dyslexia. Some  reading problems may be downstream consequences of difficulties in rapid auditory processing. It has also been suggested that CAPD may be related to cluttering; a fluency disorder marked by word and phrase repetitions, and echolalia; the automatic repetition of vocalizations made by another person 

Some common treatments for CAPD include:

Lindamood-Bell Learning Processes (particularly, the Visualizing and Verbalizing program)
Physical activities that require frequent crossing of the midline, especially effective for those with ACC. (physical therapy)


It is important to understand that if you have a child with ACC and CAPD, the child is unaware of this disorder.  Verbal interchanges can be confusing, frustrating, and downright distressing for them. (Adults too ;)  It is important that your child with CAPD when showing anxiety or frustration, their external stimulus and environment should be such that it is quiet, and not overly visually stimulating either.   You will have a much better chance at getting through to them.  And by all means do not raise your voice and shout at them, as it will only increase their anxiety and frustration.

Being an adult with ACC and having this auditory dysfunction, life has changed tremendously for me understanding it.  As an adult, I have better control over my environment and stimulus.  Earplugs are my BFF.  I can still hear quite well even when wearing them, but it cuts down on the background stimulus.  

I remember being punished as a child, because I was putting cotton in my ears in the classroom.  I was asked "do your ears hurt?" but I didn't have the ability to explain the pain, frustration and anxiety I was experiencing, and neither did my parents or teachers.

I hope you have found this introduction to CAPD interesting and useful, if so, please share my post with others.


Monday, October 27, 2014

Obsessions and Special Interests...Lions and Tigers and Bears OH MY!

I hate compartmentalizing my disability(ies) but technically speaking I am ACC/ASD/ADHD with Co-morbid depression and anxiety.  I wanted to write this post about my ASD traits, and it just feels strange to do that...these labels aren't like different pieces of me, rather they describe my life in the world. 


Children and adults on the autism spectrum have what are called obsessions and special interests.  Often someone can obsess on a special interest and then POOF! change overnight, or instantly to a new special interest.  While this describes me, mine have almost always been variations on a theme.

My parents, they were never "religious," they had me baptized into the Episcopal Church and by the time I was 4 years old they stopped attending or taking us to church.  When I was about 13 years old, I had a strong urge to investigate God.  This did not please my parents at all, if anything they were put off by it.  The local (Episcopal) church was 3 miles away in Westwood NJ.  Sometimes dad would drop me off there, but for the most part I walked those three miles on Sunday mornings to attend.

My obsession with religion and spirituality has continued my entire life.  In those young years morphing into various versions and denominations of Christianity.  Later in life these obsessions took the form of various Eastern religions.  Yet nothing ever touched my heart like Orthodox (the Eastern Orthodox Church.)  Within Orthodoxy it is believe the body is holy and the temple of God, and Orthodox worship seeks to stimulate all five senses with that which is holy.  Senses of touch, smell, sight, taste and hearing are brought together in the Divine Liturgy of the Church.

My obsessions have also taken me in other directions, specifically philosophy and later psychology.  I became well read in all the eastern and western philosophers, but most of all psychology spoke to me.  Before I was diagnose with ACC and later ASD I spent my entire life's energy trying to understand why I was "the way" I was.  I always knew I thought different, behaved different...before diagnoses I called it my "dirty little secret," my parents taught me both by word and example that my difference was a source of shame, that I was stupid and broken, and evil.

I could never accept this.  God creates all in His image and likeness, and I was no different.  I knew this deeply, but struggled with the programming of my parents and society to believe otherwise.  Long before I knew of my ACC, strangely enough I had studied it. I picked up a book on Neuropsychology years before.  However, I viewed psychology in those days as more of a whip and a goad to change my "stupidity and brokenness" into shape (like everybody else.)  Sadly, this is not (supposed to be) the purpose for psychology.  

The study of psychology before my diagnoses only deepened my depression, I was more than able to conceptualize and understand what it taught, but could not apply it to myself.  Little did I know that cognitive therapy has mixed or little success with those that have ACC or I tortured myself mentally on almost a daily basis.  I believed my parent's lies that I was morally bankrupt, that my character was flawed.

I go back often, to think about the moment I discovered / was diagnosed with ACC.  It was like a light bulb turned on over my head.  It was a major AHAA moment.  I could finally begin to shed the skins of self imposed shame and guilt that I had worn almost my entire life.  Those lions, tigers, and bears no longer threatened me.  I had always had great difficulty with Theory of Mind and applying all the knowledge I had accumulated towards my own internal state and self...but all of the sudden those many years of obsession and study on the self, on psychology and the soul "clicked."  While I still have difficulty identifying my internal states often, it is no longer a given.  I am able to objectively work with my own thoughts and emotions and those of others.

On a side note, I have always had visual obsessions...I arrange things by size and/or by colour. I have always been obsessed about "doing things an equal number of times" I would twitch to the left six times, then I would have to twitch to the right the same number, I have always been obsessed with the number "6" and would do things six times.  Although I've been told this is also an OCD trait I've not been diagnosed OCD, but such things are common for those on the spectrum.

I'm just grateful that my obsessions and special interests, in the long term served me and my growth.  God knows I could have picked far worse things to be interested in!

Saturday, October 25, 2014

Letting Go & Moving Forwards...Adults with ACC

While I can't speak for everyone that has ACC or ASD, I know I have  a great deal of difficulty letting go and moving on.  If I feel that I have been slighted, abused, or misunderstood, I hold a grudge.  I might not do so openly, but I have learned over the years to not trust people.  Trust is really hard gotten with me.

I have a great deal of difficulty forgiving and forgetting the way my parents handled (or rather didn't handle) my disabilities.  To this very day, they refuse even scientific/medical fact, and style me a monster.  Granted, I don't know the stories of all adult ACCers (those diagnosed in later life) but I have talked to enough to know that I am not alone in this.

My mother and father tried with great effort in my youth to help me, but reaching the age of 13 was another story altogether.  Around the age of 13 the Corpus Callosum in an NT begins to function and speed up function for the first time.  If, like me you are born without your CC, then you are seen to lag behind your peers.  It is the age that if deeply affected by ACC all of the symptoms start "pouring out."  From the age of 13 my parents radically changed how they treated me, my father becoming the bully that would never let up, my mother all but giving up on me.  I was taken out of "normal" school and put in the Archie F Hay Village School for the Emotionally Disturbed.  I don't have to tell you, I despise that title, they lumped us all together in one group and labeled us.  Today the "emotionally disturbed" is dropped and the Village school is known for its work with the developmentally disabled.

I have tremendous difficulty letting go of the anger and disappointment that I feel towards my parents.  Much of it is absolutely justified, but I'm certain some of it is not, or at the least is overrated.  Sadly this is the very thing that they themselves cannot do, they cannot let go of the past, refuse even medical proof of my Agenesis of the Corpus Callosum and co-morbid disorders.  So, I don't do the best job of it, but I try my hardest to take the high road.  I try to understand that they are a product of the generation they were reared in...but I don't always do a good job of it.

It turns out, many adult ACCers diagnosed later in life have a similar if not identical life story to mine, that I am not alone.  It took me years to learn and realize that my parents behavior was as abnormal as my own was.  Thing is, I was a child, and they the parent, so I feel they should have known better.  I'm a 52 year old man, whose parents are very aged, and likely will die soon in coming years...and I'll grow old not knowing my parents for well over 20 years.  And this literally breaks my heart in two.

This was more of a personal post, a venting, rather than my (usually) informative posts, so I pray you will forgive my digression into this, but it weighs heavily on my heart at this time.

Monday, October 20, 2014

ACC, ASD and Executive Function

While Executive Function issues are considered a disability in their own right, they are almost always found in people with callosul issues, autism and ADHD.  Executive functions consist of several mental skills that help the brain organize and act on information. These skills enable people to plan, organize, remember things, prioritize, pay attention and get started on tasks. They also help people use information and experiences from the past to solve current problems.

If someone has Executive Function issues (EF), they find it difficult to make and execute plans, complete things on a time schedule, keep track of time.  They find it hard to generalize using formerly learned material to solve new problems, or look for more information when needed to solve the problem.

Those with EF issues have a great deal of difficulty multitasking.  Contrary to belief, no one actually does/thinks more than one thing in any given time, this is not what multitasking is.  Rather thing of multitasking like juggling balls; the ability to quickly switch back and forth between several tasks. This is a primary reason why those with ACC and ASD have extreme difficulty when we are knocked off track from something we may be doing or trying to accomplish.  We (innately) realize that "if it is not done now, it may never be" and we might even become angry or belligerent if you interfere with our completion of the task.

There are six discreet tasks or operations that make up EF. They are:

  1. Analysis, or discovering just what needs to be done.
  2. Planning on how to handle the task.
  3. Organizing and breaking down the task into a series of steps.
  4. Deciding just how much time is needed to complete the task, and setting that time aside.
  5. Making adjustments when unforeseen things complicate the task
  6. Completing the task in the allotted period of time.

In a neurotypical individual, these steps may happen in barely a few seconds, but with someone with EF issues they can take far longer or not even complete at all.  Deciding what words to use in a conversation, for example, can be as difficult with someone that has EF issues as it would be to plan a trip in the coming days.

There are many signs and symptoms of EF issues...

A child (or adult) can find it difficult to figure out how to begin a given task, or focus so much on the details or the overall task, but cannot do both simultaneously.

We can have difficulty deciding just how much time is needed to perform a task, performing the task too quickly, without attention to detail or slowly with missing steps.

We can find it difficult when others give us feedback on our task, and we will stick with our plan, even when it is obvious it isn't really working.

We can have trouble paying attention, are distracted easily, and loose our train of thought when our task or communication is interrupted.

We need to have the directions repeated many times, being prompted constantly in order to fully complete the task.  If we are concentrated enough to perform the task, we have incredible difficulty switching from that task to another, as needed.

May not have the words to express the task in detail, and need prompting and help conceptualizing what something feels like, sounds like or looks like.  We remember information and steps better using cues, abbreviations or acronyms.

Now, in what ways does EF issues affect an individual?
  • Impulse Control
  • Emotional Control
  • Working Memory
  • Self Monitoring
  • Planning and prioritizing 
  • Task Initiation
  • and Organization

There are other "non-mental" related areas that are affected by executive function.  Some of those are regulating hand pressure (hand writing); bodily coordination, tending to over or under compensate movements to adapt to surroundings (clumsiness), teeth brushing ( I will tend to either brush too hard and damage my teeth and gums or not have enough pressure and don't get the job done.)

With all of these issues unless an EF problem is identified parents or peers may harshly judge the individual.  We might be told we just aren't trying 'hard' enough.  Or that we are lazy, or stubborn.  Without recognizing EF issues it can be extremely frustrating to the child or adult having them.

I personally relate, especially to the lack of ability to begin a task, even after planning said task.  I have trouble regularly brushing my teeth and other hygiene issues, because it is much like navigating a complicated maze.  If I have someone prompting me at ever step I function really well, but sans that prompting I wander around the house/around life like a three year old never getting anything done.

I carried a tremendous amount of shame around on my back for years regarding this.  The constant battering refrain from my father was "you just aren't trying hard enough," or "you're lazy, why can't you be like 'everybody else? ' "  Even today as an adult, while my conceptual understanding of these issues is strong, I can't simply relate them to everyone I come in contact with, so I am called "retarded" or "stupid", "bullheaded" or "lazy" by those who do not understand.

With EF issues, it takes more brainpower for us to get through one single day, than it would comparatively take an NT to get through a 7 day week.  Just communicating, just functioning for one day can be patently exhausting.  

There are many methods that can assist in EF, they don't all work, and not all the time, but they can improve quality of life.  My own EF issues are complicated by intrusive thoughts, something common to all with ACC, a constant dialogue going on in my brain, overthinking every tiny small thing into an intricate web of thoughts and ideas.  I take a low dose anti-psychotic called Respiradal that helps slow down these intrusive thoughts, and that does help my executive function.  The catch 22 is that too much of this can also interfere with EF.

So, this post is really "a day in the life of" me, what I go through daily, and what likely or ACC or ASD or ADHD child or adult friend or family member goes through in every moment of their lives.

Thanks for listening, I hope this has been helpful.  It is important for educators and doctors to take these things into account, for parents to take them into account, especially at IEP meetings and other times they need to advocate for their little one(s). 

God Bless,


What it's like to live with HFA (High Functioning Autism) video

Thursday, October 16, 2014

The Developmentally Disabled Latchkey Generation...

I was born in 1962.  They didn't really know much about ASD then, and certainly knew nothing of Agenesis of the Corpus Callosum.  My first diagnoses was ADHD at the age of 4.  This was one of many (many) wrong diagnoses until finally someone scanned my brain at the age of 46 and saw my missing Corpus Callosum.  It wasn't long after that that I was diagnosed with high functioning autism.

My parents, they were born in a generation when things such as this brought great shame on the family.  From as early as I can remember my father ranted at me "why can't you just be like everyone else?"  Early on, they tried private school, and then I eventually ended up in the "Archie F Hay Village School for the Emotionally Disturbed" (what they called us in those days.)

It is clear to me that my parents (at least in my early life) did everything they could to provide me with a happy life, trying to mainline me.  But my father's motives were not truly for my happiness but to save them from embarrassment.  I only found out in my later life how much was hidden from my extended family and my parent's friends.

Keep in mind, that until the late 1970s people with any disability, physical, mental or developmental were not granted the rights to decide their own medical care, their own housing, their own vocation.  We were largely "put away" from sight for "the comfort of society."  I'd be lying if I didn't admit to a great deal of bitterness and rage about this.  I was also a victim of sexual abuse, and when I (finally) came forward to my parents/family about it they chose to ostracize me, call me a liar and not face the truth.  These are all symptoms of being born in that generation.  

It isn't so much that I blame my parents (personally), again, they themselves are simply products of the time and place that they were reared.  

I have personally spoken to many born without a Corpus Callosum like myself, and other adults that are diagnosed with High Functioning Autism and those of us that received our diagnoses later in life, we all have this same story.  It is gratifying to work with parents of ACCers today, and watch the way they engage in their child's life.  Much like the tattoo on my right arm, "I am different, not less."

My last neuropsychiatric testing had my IQ at 200...people hear me speak and hear my intelligence and I get "you can't be autistic" and "you can't have a piece of your brain missing" "you are so normal."  Yet these comments come from people that have never really spent any time with me.  Any of my friends that have lived with/around me for any period of time will see, rather quickly that I am not your average bear, but something different.  Those "you can't really be" comments usually come from people that are uncomfortable with the idea of intellectual or developmental disabilities.  It is a holdover from the developmental latchkey generation.  The DLG  is a term that my doctor, the chief of psychiatry for Kaiser Permenente coined as she explained this phenomenon to me years ago.
To this very day, my parents choose to blame my behaviors on "bad character" "there is something WRONG with you" "you just don't try hard enough", and they have refused to speak with me for decades now.  This brings me great grief and sadness.  Having said that, being involved in the lives of parents with ACC children and ACC adults and "righting these wrongs" gives me tremendous pleasure in life.  Hence the writing of my blog.

I'm 52, and I would say to all adults of my generation and older, to open your hearts, your minds and see that this is so.  See how individuals like me were marginalized and shut away and ignored, or worse blamed and maimed for there differences...and then you go out and make a difference.

Tuesday, October 14, 2014

If you benefit from my blog...

Dear readers, if you benefit from my blog, please pass it on to parents of ACCers, adult ACCers, educators, and doctors.  This is not for my "fame" (such that it is) but to benefit more people like myself born with ACC.

Also, if you have comments or suggestions please leave them for me, I would appreciate hearing from you.


Monday, October 13, 2014

Routines, Rituals and Remembering

At any given time, on any given day in my life, I have tens of thousands of images and thoughts rushing through my brain like a mighty river. I've never adequately been able to describe this to NTs.  My brain is very much the same as how Temple Grandin describes her own.  I think almost entirely in imagery, words come much later.   
Temple Grandin

Reading Temple's description of this was the first time I had language to describe how I think.  To me, it still defies logic.  My brain is also wired for free associative thought processes.  Much the way the NT "daydreams" is my normal thinking process.

This can be terribly frustrating for someone with ACC or ASD because it seems to us (and is in reality) that no one else understands what is going on inside our heads, and we don't know how to communicate it.  God has given me a gift in the past 7 years to have "found my voice."  I never could before use language to talk about my internal processes, thoughts, emotions, etc...this seemed to slowly grow, then one day take off, hence this blog.

My life is one of routine and ritual.  Were it not for these I could not function (at all) in the world.  It gives me a great deal of comfort, because my brain is so easily distracted from the task at hand.  Many of you know the experience of walking into a room to get something, only to forget what it was you needed, and having to walk back to where you were and try to remember.  Without exaggeration, this occurs to me hundreds of times in a day, if not more.  It is because of this that I don't tolerate unforeseen changes in habits, routines and skill sets.  

The odd thing, this is another case of my not knowing how this worked with me, until much later in life.  I could not understand, as a youth, adolescent and into adulthood, why changes in routine freaked me out so.  Understanding it (now) gives a small portion of relief, if only because I can reason to myself "this too shall pass."

My routines and rituals could be seen by the uninitiated as OCD.  And, while OCD is not at all uncommon with ASDs and ACCs it is not the case with me.  My routines and rituals are coping mechanisms for my flawed memory processing.  Before my proper diagnoses of ACC and ASD, medical professionals commented that "I was the worst case of ADHD ever seen in a clinical setting."  Another example of a misdiagnoses that was covering up the real issues at hand.

When we can't follow through on our routines, or we are not allowed to finish the task at hand because of some external stimulus we tend towards extreme anxiety and discomfort.  To parents, and others observing this behavior it might appear as rebelliousness, recalcitrance, but it is not (necessarily) so.  What it really is, is the rug being pulled out from under our mental process at the time.  And most of us understand instinctually, that if we do not complete the current thought/task/project that it will most likely be forgotten and ignored, hence the anxiety.  I compare it to a blind person, who has gotten to know where all the furniture is in the house and can navigate it, then someone secretly moves all the furniture around...we end up slamming our shins into tables and chairs and tripping over ourselves.

I also know that if I have learned a skill or habit in a certain way, I have tremendous difficulty adapting that skill set to anything else, difficulty generalizing how it could be done in a different situation, or itself done differently in the same situation.

I brought up thinking in pictures in the beginning of this post for a reason.  While we are sitting or standing there communicating to you with words, it is likely that we are actually trying to communicate our imagery to you and translate that into words, and translate your words into images.  This lends itself, often to tremendous confusion.  I (personally) have this thing where, whether a simple word or complex sentence, I will quite literally say the exact opposite of what I intend, and not even understand I have just done so.  This happens to me in complex conversations where a lot of words are being communicated back and forth.  Having to go through the process of translating your words into images, then my images back to words you understand is mentally taxing and exhausting.

In an NT, a doctor might call this phenomenon "intrusive thoughts" but again, this is misunderstanding the process happening within us.  These thoughts are not intrusive, rather they are our (particular) brain's way of processing information.  I have to work extra hard, at all times to discriminate the difference between "thoughts in here" and "things out there."  I've learned to cope with this better in my older adulthood, but because of the way I think I'm usually picked out of the crowd, ostracized and made fun of, or just plain rejected and ignored.  It is obvious to others I do not think like they do, even if they can't "put their finger on it."

I am grateful to have begun gathering people in my life that make room for me, have space for me, allow me to be who I am without censure and ridicule.  At 52 this is just beginning for me, but it is a welcome change.

Troya Patch
One year ago tomorrow my very best friend Troya Patch died of ovarian cancer.  Troya loved me unconditionally and provided a safe space where I could develop and grow over years.  She never judged me and accepted me just as I come.  I miss her terribly, perhaps even more today than one year ago, but I will never forget the kindness and love she so freely offered me.  The space she made for me to grow, allowed me to offer myself the same unconditional love and acceptance, helping me become the man I am today.

Saturday, October 11, 2014

Not Dependent or Independent But Inter-dependent

It is my contention that no one is independent. Not you, not I, there is no such thing as a self-made millionaire.  The reality of human society is that we are all dependent upon each other.  Mutual interdependence is not a theory but a reality.  This is why (for me) the entire concept of dis-ability. A disability is 
"a Latin prefix used in the English language meaning “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force (see de-, un-2.); used freely, especially with these latter senses, as an English formative: disability; disaffirm; disbar; disbelief; discontent; dishearten; dislike; disown."
Seeing someone disabled, then is unable, or unabled more accurately.  How is it that I am "unable" when I am "able" of so much?

We live in the illusion of independence...

No human being is an entirely independent entity.  For example, I depend upon the electric company who powers the computer I am writing this on.  The engineers getting paid to provide me electricity and keep it coming, depends upon his paycheck to put his special needs child in school.

Some might call this idealistic, or "human" but we see interdepedence all throughout the created world, there is no where it does not exist.

Juxtapose independence  and we find it to be a modern phenomenon, a psychological, social, political and life ideology that has no reality in human or animal life.  We are all dependent upon each other

In much the same way, humanity has embraced the concept of the "dis-abled" or unable, abnormal, doesn't quite fit in so is not included with the abled category.

There are many disabled folks that worship at the altar of independence, but what is it exactly?

 Many are concerned with "helping people with disabilities achieve their highest level of independence." But, I ask who determines what the highest level is?  Just what is that?  We all have our different definitions and need not be put in neat small boxes.  Our potentials are actually unlimited; if within limitations natures bestows on us...

Each and all of us are arrayed with various gifts and deficits, or if you like, "abilities and disabilities" fact I'd like to thing that every person born on the planet is "other-abled", we are all unique.  Some may call me idealistic, but underneath the wrapping of our society it is a fact.

Yet, in our culture that supposedly advocates independence we find that "the popular people" belong to all the right groups, have all the correct categories and pigeonholes.  If I don't fit as a square peg, in your round hole, I am ostracized, marginalized and dismissed.

I wise woman I know once commented that there all kinds of flowers in God's garden...I rather think that each of us is like an instrument in a grand orchestra.  Take away anything, say the kettle drum, or perhaps the wood section, or the lowly triangle, and the music is incomplete.  Each and all have a purpose to fulfill in society, without exception.

The visibly and invisibly disabled community are the final frontier in civil rights in the USA.  Not until the 1970s did the disabled have the right to decide, there own housing, vocation, medical care etc...We are largely seen as burdens to be dealt with, not individuals that could benefit the greater world around them.

The truth is, by marginalizing those that are differently abled society is loosing out.  If the world is going to survive the impact of humanity in global warming, in wars all over the planet we need all kinds of minds working on the solutions.  Einstein didn't speak until he was three years old , they thought him (I hate this word) retarded.  Rather than being institutionalized his gifts were discovered and nurtured and he unlocked many of the secrets of physics, time and space.  I tend to think he didn't speak because he had nothing yet to say! Nikola Tesla is rumored to have been on the spectrum, and reading his writings I have no different the world would be without these men (and women)? In my humble opinion we would have been denied the richness society could enjoy.

I'm intrigued by the concept of crowd-sourcing.  Crowdsourcing is the process of obtaining needed services, ideas, or content by soliciting contributions from a large group of people, and especially from an online community, rather than from traditional employees or least that is how  Merriam Webster defines it, but it is arguably much more than this.

One example of crowdsourcing is the group Stand Up To Cancer  They are able to begin doing groundbreaking research, using a person's own immune system to kill cancer, and have already had some successes with different cancers. How were they able to pull this off? Simple, they didn't have just cancer researchers, but physicists, mathematicians, geneticists, social scientists and more working on the problem.  The goal of their research is to discover that universal genetic factor that will eventually turn of all cancers for good.  This is only possible because working on a scientific problem they crowdsourced people from many different walks of life to solve the problem.

It is one year ago next week, I lost my BFF and adopted "sister" to ovarian cancer.  As I write this, another dear friend was diagnosed with end stage ovarian cancer as well, and yet another friend was just diagnosed with stomach cancer...the idea that we can eventually use the human immune system to destroy all cancers would be a blessing.

And no, not everyone will be an Einstein, but not everyone needs to be.  But we each have our own genius.

Interdependence is a world view I will elaborate on more in future posts...

until that time...

Thursday, October 9, 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.


Wednesday, October 8, 2014

Why I am leery of ABA....Permission to Pass Please?

There are some good reasons I am...

Out of the horses mouth:
"Applied behavior analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior."
I understand, that many parents have felt that ABA is a godsend, and I agree in principle that it can be employed to change behaviors where all other therapies have failed, but I would like to look at this theory in a deeper fashion.

"...improve socially significant 'behaviors'..."  the keyword I wish to focus on is behaviors.  What we call behavior is an outward appearance, an external activity to the individual in question.  Treat a child like a dog, manipulating it's outward behavior so that it passes for "human" yet never reaching the child/individual within.  This science used to be referred to as behavioral modification.  Skinner, who was a staunch behaviorist denied the psychological lives of individuals and believed that they were entirely a product of behaviors.  Skinner taught that "psychology should concern itself with the observable behavior of people and animals, not with unobservable events that take place in their minds."

On many levels Skinner's observations have been included in the modern psycho-therapeutic approach, but his main premise that the "mentalism" as he called it, the personality, the individual as they come to know themselves in thought but cannot be observed is meaningless; this is rejected by modern psychotherapy.   In his view a human being is purely an animal, comes into the world a tabula rasa or a blank slate to be written upon and molded as it's parents see fit.  The psychological world of the child (or individual) is not taken into account.

What I fear and have reservations about is just that, that ABA works.  Like a marionette a human puppet, we can get our child, or an individual to pass as neuro-typical while never working to alleviate conflicts, encourage creativity, personality, short caring more for performance than personality, to adherence than understanding.

As an adult with ACC and an ASD, I have learned to pass as "normal" for the most part.  It is exhausting, like walking on eggshells, every moment of my life.  It is, for me, being something other than who I really am.   Through the school of hard knocks, I've learned how I'm expected to behave, what the appropriate responses are supposed to be, even while not understanding why they should.  

ABA works, sure, but at what risk?  Are we not just covering over the problem with a band-aid?  The reason it seems to work so well (spotty results really) with autistic and ACC children is because we are generally weak in the area of Theory of Mind, that "I have thoughts, you have different thoughts, and these are not us, but things or activities of mind."  So many thinking this so, abandon the popular therapies like Cognitive Behavioral Therapy (talk therapy) and swing in the complete opposite direction of behaviorism.

I do not think this necessary...

What ASD and ACC children actually need,  in my opinion are tools, skills, and methods to discover Theory of Mind and its implications.  Many call this mindfulness therapy.  In mindfulness therapy, a person learns to focus their attention on the present moment, which impedes ruminative thoughts and emotions. This therapy has recently been modified for people with autism, taking into account their information processing characteristics. A clear merit of this intervention is that it requires few theory of mind and communication skills, since thoughts and emotions are not analyzed. During mindfulness training, meditation skills are taught, which the individual can utilize in their everyday life, in order to reduce rumination and symptoms of distress. The skills can be applied in any situation a person encounters in their life. 

There are concrete reasons that autistic and ACC people have difficulty with social interactions, but "going after" the social interactions first and trying to "force skills upon them" do nothing to alleviate these causes.  Largely those on the spectrum live in a state of constant sensory over-stimulation, and exist in a "fight or flight frenzy" in their waking hours, because they haven't learned to identify, objectify and work with their emotions, bodily sensations and stimulations.  Nor have they yet identified in a meaningful manner the sense of self that is behind all of these things.  Once they have done this, then they can approach the learning of social skills.

Mind you, these are only my observations, so take them with  a grain of salt, but I'm sure that research would back me up.

Granted there are times in adult society that we must "go with the flow" but I tire of having to be who I am not.  If you allow my quirkiness and different way of doing things, and don't judge me from the outset, I might surprise you.  But force me down, pigeonhole me, jam my square peg into your round hole, and you'll likely just get an empty set of behaviors with no understanding of them and no rapport with me.

It's no surprise that the diabolical group "Autism Speaks" believes in the staunch use of ABA, they deny the autistic person, they do not speak for autism, but for their own pocketbooks.  You will find absolutely no autistic adults on their board.  AS  is all about saving embarrassment for parents of their "damaged" child, we are seen as a problem to be fixed, not an individual to be loved and nurtured. AS' rhetoric goes as far as the talk seen in past centuries of genetic cleansing, wiping us out as if we are a disease.

(Can anyone tell this post got me heated?)

Anyhow, thanks for listening...take what helps and leave the rest!

I wanted to clarify my position, as a friend had read my post and commented to me, I am not decrying ABA therapy, I am however, cautioning you to look at providers, find the right provider, all are not equal.  Agendas effect outcomes.

I myself may soon have access to ABA therapy, and I would not turn it down, it's all about perspective.

Monday, October 6, 2014

A Stranger in a Strange Land...

For as long as I can remember I have felt like a stranger, in a strange land. For those that don't recognize it this is the title of a science fiction book written by Robert A. Heinlein. The book's central character is Valentine Michael Smith; a human who comes to Earth in early adulthood after being born on the planet Mars and raised by Martians.

Smith is possessed of various and sundry gifts; but his ways, Martian ways, do not fit in with the way of humans, some loved him, most feared him and misunderstood him.

His character has always been my personal metaphor. Living my life, I feel just like Smith. Variously called the black sheep, crooked nail elephant in the room, I feel like I stand out because I don't quite fit in...I look human, but something in not quite right with me, at least in the eyes of others.

My clock tics differently than most people's.  I live in a society that speaks about individuality, yet at the same time demands a bland conformity.  This stands out even more in someone like me.  Yet, I am really "just me" and can't be anything but that.  Therefore it's not a question of conformity, rather one of equality and acceptance.  The everlasting refrain of my father in my brain "why can't you just be like everybody else" constantly rehashed in my thoughts and emotions.

The first time I ever felt like Smith I was a child of but four years.  I was in St. Mathew's Episcopal Church in Paramus NJ; my mother had just brought me to the nursery.  For the first time (that I remember, at any rate) I was surrounded by other little humans.  They looked just like me, but they were something other than me.  I was confounded, scared and panicked.  Where other little boys and girls play and socialize, albeit on a young child's level, I felt nothing but fear and confusion.

Thing is, I always have, and always will feel that even with my own family.  Not being able to cope they distanced themselves from me decades ago,  but I felt a stranger in a strange land in my own home as a child.  There were these "parent things" "mom-things" and "dad-things."  I could see my older brother Billy, that he had rapport and relationship, he knew how to play this social intercourse thing in a way I did not.  It's only now that I have the words to describe what I was experiencing.  I had always been a very verbal child and adult, but often repeating empty words.  I saw at an early age that my mind was always swimming with imagination and ideas, in every direction, and this was part of my every waking experience...yet no one else seemed to know anything about this.  My thinking that this was NT why would have I even questioned it?

At the same time, the connectedness I did not experience on this social level I experienced with "thoughts as things."  

I remember  years later in 2nd grade students making fun of me because they didn't believe I had a magic genie in my magnetic belt I wore around my waist.  I couldn't understand that even a 6 year old experienced some some separation between the images in his head and the images outside his head, fantasy vs reality.

I've never lost this over productive imagination, in fact it is my prime mover.  Yet I lack consistency in logic and critical thinking.  As I matured the one continued to grow and the other show more lacking.

I write this post with a bit of frustration.  If I don't fit in with "society" then so be it.  What can I possibly do different than what I do, what I am?

Had I the resources of early intervention and understanding, there is no doubt in my mind I would be a different person today, on many levels.  Yet, that did not happen, and here I am.  I look like a duck, quack like a duck, walk like a duck, but I'm a goose.  People with developmental disabilities in our culture are marginalized, more so implicitly and explicitly in all parts of society.  I am a stranger in a strange land.

So be kind with me, be patient, learn to accept me for who I am...I will try to do the same with you.

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.