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.

Joseph

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

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

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

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

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

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

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

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

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

~Joseph

Relationships~Too Quick to Burn Bridges...aka Waiting for the Other Shoe to Drop...

I want to write about relationships...everything from friendships to significant others, keeping in mind the old saw "if you've met one person with ACC you've met one person with ACC," my experiences are my own...

When I was very young, I recall trying to initiate relationships-friendships with enthusiasm.  I also remember this zeal dying quite early in my life.  Unlike typical ASD, most of us with ACC want to have friendships and relationships, but we tire of the cycle in which invariably it will turn south.  I have always been aware that I have the ability (in spades) of gaining rapport with people, it is just what to do after I have gained rapport that has always troubled me.

I'm charming, eloquent, intelligent, yet facing maintaining relationships I shrink at the task.

I suppose I'm jaded because in many ways I have given up trying.  I have come to accept that all people will come and go in my life, none will stay, not even family.  I can think of perhaps two exceptions to this, people I held dear and they the same of me, but unfortunately they are gone off this earthly plain.

Even besides the social difficulties present with my ACC, the truth is I am downright quirky, and I know it.  I know that my actions and reactions to all things of life can look odd or strange to those not looking through my eyes.  Again, the exceptions to the rule are those fully acquainted with ACC either because they or their loved ones are born with it.

In many ways, I just don't give people a chance to get close to me, because I expect that either they or I will burn the bridge that unites us eventually.  I have gotten so used to this happing that often I will jump the gun and sabotage a relationship, just to avoid the pain of them cutting it off and ending it.  I walk on eggshells, waiting for the other shoe to drop.

While this isn't the case in all of my life's circumstances it is for a large part of them.  I have come to accept and expect this so that when it does occur I'm not let down by it.  Every once and a while I am surprised by someone who, by hook or crook is exposed to me and my ACC and loves me not just in spite of it, but because of it.

"T" was one like this.  She so embodied acceptance and non-judgemental living that when I was first diagnosed with ACC she explained how she had already observed all of what I was, even prior to diagnoses and accepted me just as I showed up without and preconceptions.  It was this unconditional love and support that helped me through the initial discovery of my condition and beyond.

In a sense, it was she who taught me about unconditional love, or at the least demonstrated it to me so that I might model it within myself.

Even with all the above I've written about relationships and waiting for the other shoe to drop, T taught me first and foremost about self-acceptance.

Discovering my ACC had two sides to it.  Immediately after I was diagnosed I experienced the "AHAA" moment, the light bulb over my head, the answer to so many of life's questions, the "why" of who I was.  Yet at the same time I remember looking at the brain scans with my missing corpus callosum and enlarged ventricles in horror and disgust.  The finality of being born with this congenital defect hit me like a ton of bricks a short time later.  Dealing with feelings of inadequacy, of brokenness, defectiveness, I was so grateful to have her in my life.

T would have been the first to admit how imperfect a human being she was, in fact, she would often laugh at herself, not take herself so seriously.  I also had this wonderful behavior to model, and I work daily now towards self-acceptance.

Those of us with ACC and ASD are always pre-judging our behavior. We over analyze pretty much everything we say and do, and second guess ourselves.  This is (for me) one reason that socializing is so exhausting.  On the one hand, we over analyze, on the other, through lack of executive function we jump the gun and over or under react to a given situation, then in retrospect beat ourselves up for it.  Day by day, little by little I grow some beyond this.  I don't know that I will never not do it, but through modeling behavior and learning to live with the hardware I was given life shines just a little bit brighter.

Another great example for me to model has been the many parents of children and adolescents with Agenesis of the Corpus Callosum that I have almost daily contact with, via support groups, email and in person contact.  These parents strive to both improve their loved one's quality of life while also working to accept them just as they are.  Needless to say, I didn't grow up with the best of examples in this regard.

Also, a great help have been the many adults with ACC that I have contact with.  They have shown me that we all daily rise to our own challenge, bravely and brilliantly, and that I am not alone in this.

This post has been more "stream of thought" than anything else, I had intended to go into a detailed analysis of relationships, but it is what it is...

Thank you for listening,

~Joseph

My Personal Toolchest for Living...

It will come as no surprise to the parent of an ASD or ACC child that the typical tool chest for parents of an NT child, for the most part, do not apply.  It isn't that these approaches cannot work, they certainly can, but there are aspects to personality and maturity that necessarily must be in place for these common approaches to have any value or benefit.

Having said the above, it is also important to realize that if you have met one child or adult with ACC you have met one child or adult with ACC.  What works with one need not necessarily work with another, and visa versa.

One must also understand that "tools" need not necessarily be "methods" or "therapies", but can and importantly do represent knowledge and understanding.  

The first and most important thing to realize is that children/adolescents/adults with ACC will and must learn in their own time, not by anyone's schedule, and certainly not using an NT individual as the measuring stick by which to judge them.  It should be understood that when someone has ACC we are to expect "their teens, throughout their twenties."  The age numbers mentioned are arbitrary, but the principle holds true.

By the time I was 13 years old, I had an above average intelligence, however emotionally I was quite a bit younger than my peers.  In my experience, ego development happens differently, at a different rate than NT children.  I'll not go into specifics, only because "ego development" is looked at in different ways by different schools of thought...I only wish to stress that the "normal" or average developmental stages look very differently for us.

Again, this is only my personal opinion built of self-observation and observation of other ACCers, but a primary thing "missing" or incomplete in many ACCers is Theory of Mind. ToM (Theory of Mind) is the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own...in short the ability to objectify mental and emotional states, to "step back from them" as it were, and "operate them" as a series of tools.  Without sufficient ToM an individual experiences that they actually are their thoughts and emotions...they are too close to them to objectively work with them.

Normally children develop ToM at roughly 3–4 years of age and through a progression of stages starting at around 18 months with the awareness that their own mental states are distinct from those of others.  It is found children on the Autism Spectrum as well as Agenesis of the Corpus Callosum do not develop ToM sufficiently, and in some cases not at all.

ToM itself is also on a spectrum, let's call it, from the completely "naive" to actualized, to advanced...Throughout my own life, my own ToM was very weak and underdeveloped.  Even though I myself had an above average IQ, read many books on "psychology," my knowledge were more like Legos that I would put together in various ways, to make interesting things, but said knowledge was never applied to me personally in a way that I could use for my benefit.

My own parents and educators and doctors being unaware of ACC, would see me present as very intelligent, I could "speak the words they wanted to hear" but this did not mean I understood them and applied them as personal experience.  I went through hundreds (thousands?) of hours of "psychotherapy" that (even in my own eyes) were largely unproductive, useless, and even created more difficulties for me.

I began to experience profound shifts in my own ToM in my late thirties to early forties.  The primary tool that I used, and worked with over and over again were mindfulness practices and meditation.  I'm aware that many people have concepts of what these things are (usually incorrect ones), yet I've not found one singly more powerful set of tools than these.

Mindfulness, per say is borrowed from the system of Buddhist psychology known as Abhidharma.  It need not have any religious or spiritual overtones attached to it.  The tools could be considered more a way of being rather than a thing for doing.

The particular set of tools I use(d) are borrowed from the Zen school, and include:

Meditation- (This could look as simple as following and paying attention to ones breathing, their inhale and exhale for one minute, when distraction/thoughts come (and they will) gently return to following the inhalation and exhalation.

Being Awake-We are ACC or not usually distracted in our daily life, in the middle of whatever we are doing we slip into dreams/thoughts/fantasies of the mind, so we practice "coming back to the present moment" of whatever we are involved with, recognizing the tendency to "slip away in thoughts" and recognizing "coming back from the thoughts" to whatever we are currently doing.

Watching Our Urges-ACCers have trouble with executive function and regulation of many things, sleep, food, sex, anger, you name it.  Learning how to become aware of when an urge to do something comes upon on, just examining it and not necessarily acting on it, and watching it disappear just as easily and quickly as it arose inside of us.

Watching Our Ideals-Our ideas about how things "should" go, how they should occur.  Someone cuts us off in traffic (to give an example) and we think "they SHOULDN'T have done that!!!", but really, who is to say?  Are we in their heads, do we know what they were thinking?  Perhaps that "SHOULDN'T" is really causing me anxiety and suffering, more than getting cut off in traffic.

Accepting People & Life As They Are-When I stop trying to change a loved one, and accepted them for who they are I am able to just be with them and enjoy my time with them. This acceptance has the same effect for anything we do — accepting our peer, a student, co-worker, another child,  but also accepting a “bad” situation, an unpleasant feeling, an annoying sound. When we stop trying to fight the way things are, when we accept what is, we are much more at peace.

Learning to Let Go of Expectations-This is really the same as the previous two tools but it’s useful to watch your expectations with an upcoming situation, with a new project or class, and see that it’s not real and that it’s causing you stress and disappointment. We cause our own pain, and we can relieve it by letting go of the expectations that are causing it. Toss our expectations into the ocean.

Learning to Become OK with Discomfort-The fear of discomfort is huge — it causes people to be stuck in their old bad habits, to not begin new projects or skills, to be stuck doing something they don’t really like, because we tend to stick to the known and comfortable rather than try something unknown and uncomfortable. It’s why many people don’t eat vegetables or exercise, why they eat junk, why they don’t start something new. But we can be OK with discomfort, with practice. ACCers need to start with tiny things, small things, with things that are a little uncomfortable, and keep expanding our comfort zone.

Watch Our Resistance-When we try to do something uncomfortable, or try to give up something we like or are used to, we find resistance. But we can just watch the resistance, and be curious about it. Watch your resistance to things that annoy you — a loud sound that interrupts your concentration, for example. It’s not the sound that’s the problem, it’s your resistance to the sound. The same is true of resistance to food we don’t like, to being too cold or hot, to being hungry. The problem isn't the sensation of the food, cold, heat or hunger — it’s our resistance to them. Watch the resistance, and feel it melt. This is a HUGE one for ACCers.

Learn To Be Curious- We are too stuck in our ways, and think we know how things should be.  Instead, learn to be curious. Find out. Experiment. Let go of what you think you know. When you start something new, if we feel the fear of failure, instead of thinking, “Oh no, I’m going to fail” or “Oh no, I don’t know how this will turn out”, try thinking, “Let’s see. Let’s find out.” And then there isn't the fear of failure, but the joy of being curious and finding out. We should learn to be OK with not knowing.

Learn To Be Grateful-We complain about everything. But life is a miracle. Find something to be grateful about in everything you do. Be grateful when you’re doing a new habit, and you’ll stick to it longer. Be grateful when you’re with someone, and you’ll be happier with them. Life is amazing, if you learn to appreciate it.

a very difficult one for ACCers: Learn to Let Go of Control-Often we think we control things, but that’s only an illusion. Our obsession with organization and goals and productivity, for example, are rooted in the illusion that we can control life. But life is uncontrollable, and just when we think we have things under control, something unexpected comes up to disrupt everything. And then we’re frustrated because things didn't go the way we wanted. Instead, practice letting go of control, and learn to let life happen.

Learn To Be Compassionate-This sounds corny, but compassion for others can change the way you feel about the world, on a day-to-day basis. And compassion for yourself is life-changing. These two things need remembering, though, so mindful living is about remembering to be compassionate after you forget.

As you can see, these are things "to be" not things to do...when practiced they can evoke ToM and develop it.  Above all, I (personally) think meditation is important...again it need not be anything religiously based, I have practiced the same form of meditation for many years now, and it is not directly related to any religion or way of thinking, in fact can be adapted to any religion or way of thinking...I practice of form of traditional meditation, albeit in a secular fashion, I also have taught it to many people.  It is suitable for adolescents over the age of 13 or so, and there are modified versions of it for very young children.  The only "requirement" is that the individual not be severely intellectually disabled, as the skill is learned like any skill, and minimally one should be able to follow simple instructions.

The twelve tools mentioned above are sort of a "support" for my practice of meditation...but it was the practice of meditation that is solely responsible for my developing ToM.  Having said that, there are times, when my mindfulness (another name for ToM) wanes and I become so identified in my thoughts and emotions I can't separate myself from them, but those days are rare now, whereas they used to be my constant experience.

I hope you have found this information helpful.  If you would like me to elaborate on anything or explain it further, please either leave a comment or reach me on Facebook, and I'll do my best to accommodate you.

Thanks for stopping by!
~Joseph

MUST SEE RESOURCE!!!

I've added a MUST SEE resource created by Pieta Shakes, a very good collection of research papers on Agenesis of the Corpus Callosum that can be found here : Corpus Callosum Research the direct address is: https://disordersofthecorpuscallosum.com/the-research/ and can also be found in the sidebar to the right under "Related Links."

A 386 in a world of Pentiums...

While not the most accurate analogy, the 386/Pentium analogy works quite well when discussing someone with ACC as compared to a neurotypical individual.  There is no doubt that I am intelligent, that I can remember wrote facts, patterns, sometimes to an encyclopedic extent...but it is what I can do with these in the moment that makes me different than your average bear.

Perhaps, for me, one of the most frustrating aspects of my ACC is what I term "lag-time."  In the course of any given conversation or interchange, it may initially go unnoticed by the parties involved but it's result is not.  This is particularly true of social or emotional situations between peoples, things that an average person wouldn't think twice about...

I might be asked a simple question of how I am going to respond to a situation and before they even finish asking the question the "gears in my head" come to a screeching halt.  Sometimes it's not even "I don't know the answer" sometimes it's just blank and very frightening, so very difficult to describe.  Then oftentimes the gears might move a little, back-up, then move again.  This is especially true if a situation is not what I expect it to be or is outside of my expectation, I will simply have great difficult grasping it, no matter how simple the concept, regardless of my intelligence...

This is where "lag" comes in, because minutes, sometimes even hours later the answer will click and I will have an AHAA! moment.  When my soulmate was alive we might have a disagreement in the morning over something I simply could not understand...ten hours later, when she'd be home from work and we'd be in the living room I would just start talking about it like we'd never left off of it with an understanding of it just as she intended.  Frustrating for her and for me.

There is also the matter of being able to decode and express my own thoughts so that others may understand them, but that is a subject/post for another time...

I have come to experience that no amount of reasoning is going to correct these processing errors or this lag time.  I experienced it (I believe) far more profoundly in childhood, and was severely punished for it time and time again because I just could not understand what was going on.  Unfortunately, as an adult, I have grown into a pattern of avoidance with people simply so that this has less of a chance of occurring, (but it still does.)

I will write more about this in the future, today I just wanted to introduce the subject...

Thanks for listening,

Joseph

I Am My Thoughts and Feelings versus I *Have* My Thoughts and Feelings...

I'm writing today on ToM (Theory of Mind) People with ACC, in my experience, have a great deal of difficulty objectifying our thoughts and emotions.  Because we have difficulty with executive function skills, we also have issues with regulating our thoughts and our emotions, they are either "full on" or "full off" regardless of what they are (happy, sad, angry, peaceful, depressed, bored, etc...) and why they arose in us in the first place.

It is my experience that "it is so crowded in there" that there is no space, no room for our cognitive process to work with

 and regulate, and know the appropriateness of both thoughts and emotions.

While it appears that those with ACC fall along a spectrum, this is more or less true for all of us.  I have met ACCers with well developed ToM, with none, and everything in between.  I imagine the ability to work on and develop ToM also falls along a spectrum.  As I have mentioned in other posts, there are exercises that can evoke ToM in an individual...As mentioned above, often those with ACC find no "space" between themselves and their overwhelming thoughts and emotions, yet there are methods possible to create breathing room in the psyche.  It is this breathing room itself that evokes ToM.

I found personally, that I could not identify my thoughts and emotions accurately, nor express them, until I first related to how they made me feel in and as my body.  What I mean is "I'm feeling this 'emotion', how does it make my body feel? Do I feel it in my chest, my stomach, my head maybe? Is it pain, is it nausea, butterflies?"  You see, another issue with our ToM is that we can be very unaware that emotional states are felt in the body...yet identifying these feelings in our bodies is a first step in being able to cognitively identify and be able to describe/relate these thoughts and emotions.  Once we have identified how it makes us feel, this gives us a "handle", it gives us something to work with in a concrete manner.

For example, I get anxiety attacks.  I could not always tell you that what I was feeling was anxiety, to me it was just "emotions" and any tags I would put on them, wouldn't be accurate, they would likely be only what I think you wanted to hear. I began to work with my anxiety, and I discovered that this feeling I had was a pain in my chest and that I could hardly breath.  My breaths, I discovered were very shallow and rapid.  I felt like my stomach was this large unprotected vulnerable area, and I was afraid of anyone going near it.

So, the next step for me was not a cognitive approach, decidedly not psychotherapy.  The next movement in my process after identifying how this felt in my body was to do its opposite.  I "could not breath", so instead I made my focus my breath.  Instead of shallow rapid breaths into my chest, I would take long slow breaths, in and out, all the way to my belly.  I would not force myself to do this versus the other, but I would treat myself gently.  Every time that impulse of anxiety would move me back up into my chest and my breath would want to become shallow again, I would gently redirect my attention into my belly, and long, slow, deep breaths, in and out.

What happens to me is that there becomes a "space."  A space between the bad feeling in my body (anxiety) and the feeling of relaxation.  There becomes a realization between "this feeling" and "that feeling."  The space between these two things is where I exist.  I begin to understand, that I am neither the bad feeling or the good feeling, but I am something other than that.

I began to realize that I had these feelings in the body, instead of feeling that I was those feelings in the body. This step, in my opinion, is extraordinarily important.  It is an objectifying of the physical effects of our emotions felt in the body.

Once I was able to objectify how these emotions felt in my body, I was able to push them away slightly at "arms length."  After I'd gained a lot of practice doing this, my cognitive processes began to latch onto these sensations in the body and label them "anxiety" vs "peace and relaxation."

This is a very simple if dumbed down version of the process I have used that has helped me develop Theory of Mind.  I have been taught even more refined versions of this that have improved my quality of life greatly.  I practice a form of meditation, that in itself evokes this process very quickly and distinctly with my thoughts and emotions.  It has not been an instant fix or easy process, but remains a steady discipline I have embraced that continues to produce useful changes in my cognitive and emotional life.

I'm convinced that almost everyone with ACC is capable of some level of this process in development.  I would think the only barrier to such development might be someone who is profoundly intellectually disabled.

I would add, that this process continues to go on within me, and will likely never "end" or complete.  This is as it should be, (I feel) as human beings are meant to continue and develop, grow, and change throughout a lifetime of experiences, not just "once and your done."  In times of extreme stress or emotional upset, I can and still do appear to "lose" ToM momentarily.  I will get so caught up in the thought or emotion and its feeling in the body that I have no "room" to maneuver, no space to think about it objectively.  When this occurs, I go back to basics, and begin the process all over again, as described in this post.

I hope this post has given ACCers and parents of ACCers something to think about, ponder and explore.  I have not gone into any great detail about this process, as it really needs to be tailored individually to the person who experiences it, there is no such things as one size fits all.

Should you have any questions or comments, you can leave them here, or contact me via Facebook in one of the ACC groups.  I would be happy to help in any way possible.

Ableism, Right at Home...

I want to write about a most painful subject.  For me, it is one I have dealt with most of my life, and that is Ableism.

Ableism is both the practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities; and a set of practices and beliefs that assign inferior value  to people who have developmental, emotional, physical or psychiatric disabilities.

An ableist society is said to be one that treats non-disabled individuals as the standard of ‘normal living’, which results in public and private places and services, education, and social work that are built to serve 'standard' people, thereby inherently excluding those with various disabilities.

In extreme cases, morality, worth and intelligence may even be equated to being able-bodied or able-minded, while disability is conflated with immorality, stupidity, and worthlessness, and disabled lives may be devalued. The eugenics movement of the 19th and 20th centuries, which took its most extreme form in Nazi Germany, was a product of this belief, and some believe the ‘right to die’ movement is also an outgrowth of ableist beliefs. 

What has been most painful for me lately, is that on a personal level, someone who I trusted entirely; my priest; has entirely treated me in this ableist fashion and has not been there as a support during a most trying time for me.

I did my best to educate this person about my disability.  I provided information online about ACC and autism several times.  I happen to know that he never even looked at any of it, never even considered it.  When I brought up my disability, he laughed it off and said "everyone is a little bit crazy."  ACC and ASD are not just "a little bit autistic" but biological and neurological disorders that make a difference in how I function (or not) and how I can show up in the world.  To understand these differences is to understand me better, to be able to relate to me on my level.

All of my life, I have been forced to "measure up" to an impossible standard, and when I did not, I was judged immoral, imperfect, broken, lazy, whiny, stupid and much worse.  But to be treated that way by those who are supposed to love you unconditionally is beyond repulsive.  What damage it does to the soul is unfathomable.

I will write more in depth about this, as I am quite passionate about it, for now I just wanted to broach the subject, as it is really on my heart and mind.

More to come...

Navigating Life...or the GPS of Accommodations and Services... Be an Advocacy Hero...

Whether you are an adult of an ACCer or you are an adult ACCer yourself, you would surely recognize how difficult it is to navigate the world of services and accommodations that we need in order to thrive.

This is no less true for me.  I'm 53 years old, and for most of my life now, have fought (falteringly) to get even my basic needs met.  I collect disability, which is less than $800 a month, so I cannot pay for things that people even find most basic.  Furthermore, the Social Security Administration designs it so that those who are disabled remain ensconced in poverty.  If you collect SSI you may not have more than $2000 in total assets of any kind.  You cannot save money in case of an emergency, or for any other reason.

The laws that govern SSDI also make it nearly impossible for someone to return to work.  Sure they have the "ticket to work" program, but it is complicated and designed ONLY for those going back to work that they can fully sustain themselves on.  The laws governing SSDI are so complex, so controverted that one cannot even have a small supplemental income without endangering both their monetary and medical benefits

And this is only part of the issue...

For those of us who have no choice but to try and survive on disability, accessing related services to improve our quality of life is very difficult.  Again, there are services out there, but if one is lacking in executive function, cognitive skills, social skills and a law degree many of them are difficult if not impossible in some States to access.

I think (from personal experience) this is especially true for those of us that are misleadingly labeled as "high-functioning." The trouble with that monicker is that it really describes NOTHING.  Sure, I can drive, feed myself, bathe, brush my teeth, I can walk and talk....yet the most basic of these skills (with me, for example) are inconsistent at best, and without prompting I have difficulty remembering my own ADLs.  The mental power, social skills, and finesse that it takes to navigate agencies for services, is something WAY beyond my own personal capability.

Due to this, I (personally) have gone without, for the majority of my adult life...I have languished, failed to thrive, felt defeated and dejected even trying.  It was only a major life crisis when an individual took advantage of me (another post to write about, ACC, ASD and social naivete) forcing me and my service dogs to become homeless, that Adult Protective Services finally stepped in, observing that I am indeed a vulnerable adult.  Once on the radar of APS, they worked tirelessly to arrange to have my basic needs met.  Because of this, I am able to begin to relax and not be in a constant panic mode as to where I am going to live, how I am going to take care of myself.  They have arranged for me to get In Home Support Services to help me with my ADLs.

I also, in recent times, have another advocate in my life, let's call her "L."  She excels in areas that I

simply fall short in; having both the patience and the knowledge and skills to navigate this difficult landscape.  She has worked tirelessly to make sure my needs are being met, and to make those who have taken advantage of me and hurt me to answer to the law and justice.  These are things I simply cannot do on my own.

While I'm not quite "there" yet, all of the events leading up to today have set me up to be in a position to begin to thrive, for the first time in many years.

I know many others with ACC and ASD....Especially adults with ACC that are diagnosed later in life, we have suffered the school of hard knocks (many of us), because we lacked the knowledge and support to get along in life.  Our parents, friends, caregivers, etc....not knowing about our condition simply did not and could not have the skills and means to help us, or often not even the desire to help us.  Many adults with ACC I have met have very strained relationships (or like in my case, NONE at all) with their families.  This is usually because of late diagnoses, after years, even decades of life not knowing why we were so different.  In my case, my own father calls me a "psychopathic liar", "lazy", "unlawful", "immoral" and worse.  The man carries far too much shame to admit he was wrong about me, and I haven't really spoken to him for many decades.

If you are a parent of an ACCer and/or ASDer, be your child's champion, they need your help and assistance.  Parents, long before your child get to "legal age" it is extremely important to begin to navigate the system and to set up supports they will need to thrive. Do not put it off.  If I had had an advocate in my 20s as I do today, even without having my complete diagnoses my life would look very different.

If you are an adult friend or spouse of an ACCer or ASDer, and you see them stumbling all the time, ask yourself if you might have what is needed to be that person's advocate, to fight for them, work for them, help them thrive.  If you dig deeper, you may find that person is not quite as able to cope and function as they might want to put on.  I know I myself had far too much pride (strange considering my horrible self-esteem in those years) to ask for help, and frankly didn't know HOW to ask...YOU might just be that person's hero.

~Joseph Galbraith

The Bane of the Black & White of Things...

There is a saying amongst people that practice Neurolinguistic Programming that "He with the most behavioral flexibility, wins/is happiest."  This is a source of great difficulty for many with ACC and with autism such as myself who tend to see the world in a series of rigid absolutes, black & whites, as it were...we are concrete, literal, and absolutist.  This is not due to obstinacy or choice, but the way we are wired, literally the way we process thought and action.

We have our own set of rules and regulations and expectations of the world; these are rigid, black and white, right or wrong with very little room for interpretation or tolerance for variability. We feel safer with concrete, predictable rules and laws that remain constant, holding to these rigid beliefs and expectations, and will likely melt-down if challenged or forced out of them.

This holds true for us in social situations as well, where it does not so for the neurotypical individual.  We hold so tightly to our own social rules that we cannot easily read the normal fluctuations of social discourse that take place amongst people, this leaves us "flying blind" much of the time...we will misread a situation, react incorrectly, control the situation to match our expectations...and get extremely angry when they don't.  If things are not the same every time, our world falls to pieces....there is no "average" or "is this 'good enough'?", no possible alternatives but yes or no.

I tend to have an overly simplistic cognitive style... This is due to problems synthesizing complex information.  Those of us with ASD often artificially split decisions and social situations into two extremes: right/wrong, black/white, good/bad.  One teenager with ASD said:  "You need to understand that I only see the world in terms of zero's and one's, much like a computer.  I don't understand anything else.  It's all or nothing."  This makes decisions and life much simpler.

Individuals with ASD can be overwhelmed by anxiety and their decision-making process paralyzed by understanding that most decisions are complex and involve both good and bad aspects.  Therefore, in order to regulate their emotions, the person with ASD will tend to simplify their choices by dividing them into polar opposites.  This gives them greater clarity and avoids the anxiety and emotional regulation problems associated with seeing the world as complex.

Truth be told, this describes me to a T, and I'm quite tired of apologizing for who I am.  While I do spend much of my life trying to better myself, I do know that there are psychological and personality traits, traits of mental functioning that will never change because they are literally how I am wired on a neurological level.  The difficulty I have is that those around me, even those that love me (or say they do) refuse to recognize, through either stubbornness or lack of education, that when they communicate with me, that they cannot expect me to understand complex figurative thought and language in many situations.  Or they will "drop a bomb" on me, give me an unsolvable issue and stop talking to me because THEY are frustrated? (never taking into account on how they are making ME feel.)

Now, there are areas where I can and need to change, but it is a great challenge, and as soon as I shift in one area, another snaps back, over and over again, so it's a never ending battle.  Some of those areas are:

• Rigidly seeking predictable, static routines & activities.
• Actively resisting change.
• Controlling all activity & interactions.
• Seeking rigid routine and self-controlled activities to avoid chaos/confusion.
• Having a strong resistance to following the lead of others.
• Being compulsive, repetitive, ritualistic, & self-absorbed; oppositional; self-stimulating and defiant.

As I said, it is like Dr. Doolittle's Push-me-pull-you, I work on one area of this, and another area crops up, then I work on that area, and the first one pops up again, a never ending battle.

So, if it seems that I am particularly hard headed, and resisting what you are telling me, have compassion, because it may be that I am just not able to grasp what you are saying and meaning in that moment.

Thanks for listening.

~Joseph  Galbraith

Dead of Winter...loneliness and Sensory Processing Disorder

 Thinking about the coming Spring, I hope for change. 

I can't speak for others on the Spectrum, but being/living alone is really hard on me. If I didn't have my girldog Stella I don't know what I'd do. I tried to explain to someone today that 'relationships' just don't work for me. It is enough for me to manage my own life, and take care of my little dog; but having to mind-read someone is exhausting. Of course 'mind-reading' I mean in the psychological sense, understanding what someone means by what they speak and what I'm supposed to infer.

Alas, I'm in a someone chosen single life.

Any serious relationship I've been in never lasted, because I was too invested in trying to understand the other person that it was exhausting to me.

People think autistics are loners, that we don't want to be around other people, but it's just not true. We have to take socialization on our  own terms, and only so much as we can cope with.

For example; I love my parish, St Tikhon's but by the end of Sunday liturgy it is as if I'm traumatized by overload. One-hundred people in a small space is like being crammed onto an elevator. And, I'm sure some people think I am just weak or overreacting, but they've  not lived inside my skull. I've never felt more welcome anywhere, but it is still a harrowing experience when the Church is full to capacity. 

There simply is nothing comparable to the Divine Liturgy. Christ raises us up to heaven while condescending to us in our humanity. So experiencing it, and the real living flesh and blood presence of Christ, is at the same time both thrilling, and the peace is tangible. At the same time, afterwards, my body and brain react to the  overstimulation   of people, sound, colour. I come home and usually either nap or sit in silence long enough for my body to calm down and my mind to find equilibrium. I only hope people understand; and for the most part they do.

Sensory Processing Disorder (SPD) is a real thing. It can affect those on the Spectrum, those with a DCC (disorder of the corpus callosum), those with hydrocephalous and others. Some people will treat me as if I just need to 'get over it,' and what they don't get is that I wish I could. It is not a pleasant experience at all.

Lots of things affect my ability to function, sleep, nutrition, alone time... I can hear someone say, 'but that's true of all of us.' Perhaps, but even more so for us. 

thanks for listening,

~Joseph

Mindfulness, Theory of Mind and DBT et al...

There is a common thread amongst those on the Autism spectrum and those with Agenesis of the Corpus Callosum. We all have varying levels of difficulty with Theory of Mind, unlike anything seen in the neurotypical population. Theory of Mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own.

The level at which an individuals comprehends ToM (Theory of Mind) is a tell to how well they can integrate socially with others, understand them, communicate with them and describe their own unique needs and desires.

Particularly ToM is only present in people on the spectrum and those with ACC with variable levels of success.

While I do not know clinically it is understood that ToM is not  something easily gained or gotten if it is not present at all.  There are those on the spectrum to which they have no grounding in this existential necessity of life. However, that being said, I have discovered for myself that if one has a limited ToM, there are indeed exercises, practices, ways of life that can enhance and finely tune what one does posses.

Why is this important, you may ask?  To the degree that someone has insight into their own thought processes and those of others is the degree at which an individual can function in the social/emotional world around them.  Those with very little or undeveloped ToM operate on a more instinctual level.  By instinctual level I don't mean a higher instinct, but that of an animal of fight or flight, feast or famine type of processing the world around themselves.

In my own experience, while I have and continue to work on skills to finely hone my ToM, I find that it is not always a present part of my experience.  There are times in which it is almost non-existent, and times which it is very strong and operative.  However, the more I practice it, and become aware of it, the more consistent a life experience it is for me me.

Mindfulness is both is a foundation of, and a result of an active ToM.  By mindfulness I am referring to a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations.  While mindfulness can ease the suffering of humanity in general, it is even more so a specifically needed skill for those with ASD and ACC (at least I feel this is so).  Mindfulness is also the quality or state of being conscious or aware of something...the more someone with ACC or ASD is aware of their own internal thought processes, emotions and such the more they become aware of that of others.

There are specific forms of therapy and self-learning that can help increase one's mindfulness and ToM.  Here, I am particularly thinking of DBT, or Dialectical Behavior Therapy. DBT is a cognitive behavioral treatment that was originally developed to treat chronically suicidal individuals diagnosed with borderline personality disorder (BPD) and it is now recognized as the gold standard psychological treatment for this population. In addition, research has shown that it is effective in treating a wide range of other disorders such as substance dependence, depression, post-traumatic stress disorder (PTSD), eating disorders, and syndromes such as Asperger's (high functioning autism) and ACC.

DBT includes four sets of behavioral skills.

1. Mindfulness: the practice of being fully aware and present in the moment.
2. Distress Tolerance: how to tolerate pain in difficult situations, & not change it.
3. Interpersonal Effectiveness: how to ask for what you want and say no while maintaining self-respect and relationships with others.
   &
4. Emotion Regulation: how to change emotions that you want to change.

The more one learns to practice and exercise these skills, the more they become second nature, and the more Theory of Mind becomes active in an individual; giving them choices in life, behavior, and communication that before were not possible. 

The term "dialectical" means a synthesis or integration of opposites. The primary dialectic within DBT is between the seemingly opposite strategies of acceptance and change. For example, DBT  accepts people as they are while also acknowledging that they need to change in order to reach their goals. In addition, all of the skills and strategies taught in DBT are balanced in terms of acceptance and change. For example, the four skills  include two sets of acceptance-oriented skills (mindfulness and distress tolerance) and two sets of change-oriented skills (emotion regulation and interpersonal effectiveness).

Zen and contemplative practices underpin DBT mindfulness skills and acceptance practices. DBT was the first psychotherapy to incorporate mindfulness as a core component, and the Mindfulness skills in DBT are a behavioral translation of Zen practice. The dialectical synthesis of a "technology" of acceptance with a "technology" of change was what distinguished DBT from the behavioral interventions of the 1970s and 1980s. Dialectics furthermore keeps the entire treatment focused on a synthesis of opposites, primarily on acceptance and change, but also on the whole as well as the parts, and maintains an emphasis on flexibility, movement, speed, and flow.

Here is a link to an excellent DBT self-help site on the web to get you started, should you be interested.  DBT can and is taught in a group setting, in a therapeutic setting and as a self-help modality. I recognize that the different approaches will work differently for various individuals, but I encourage you to check it out.  For those of you with ACC or ASD children, these techniques can be adapted to and the skills taught to young children as well.

Perhaps the single-most helpful thing I have learned and practiced outside of DBT (which I credit greatly for improving my life) is mindfulness meditation.  I particularly practice Anapanasati or the Buddhist meditation of following the breath.

I know there are many out there that think "I can't stop my thoughts", "I can't be still to meditate", and other such things.  What individuals are mistaken about though is the very idea of stopping thoughts.  Not only is this not possible (for anyone) it is undesirable as well.

While it is technically more than this, Anapanasati is very simply bringing one's self back, over and over again, to the sensation of the breath in the body, at the abdomen, and/or the nose.  When one becomes distracted (and everyone certainly will) and starts thinking or dreaming or whatever, one simply and gently directs themselves back to the sensation of breathing, inhaling and exhaling.  The point of the exercise has little or nothing to do with stopping (or even avoiding or ignoring) thoughts, rather it's purpose lay in recognizing one is distracted and volitionally bringing one's attention back to the present sensations of the breath.  

When done continually, this evokes ToM and mindfulness directly...when one realizes "hey, I'm thinking about chicken dinner tonight and forgot my breath!" this is an "AHAA!!!" moment to be celebrated, that one became aware and directs their attention back to the present (breath.)  Among other things it will sharpen an individual's experience and understanding of their own internal world, thinking processes, etc...thereby making them aware of other's also.

Another aspect of mindfulness meditation is that is sharpens executive function. (EF) Executive functions (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals. Executive functions gradually develop and change across the lifespan of an individual and can be improved at any time over the course of a person's life. Similarly, these cognitive processes can be adversely effected by a variety of events which affect an individual. EF is particularly something thing all ACCers, along with ASDers and ADD/ADHDers have varying levels of difficulty with.  Mindful meditaiton can work, over a long period of time to gradually increase and develop better EF.

Mindfulness meditation is something that can be carried out, regardless of religion or belief system, or lack thereof.  It is not particularly Buddhist, although the Buddha did in fact refine and teach the system exclusively.

There are some excellent books and tools out there to learn mindfulness meditation.  I'm a little reticent to put a bunch of links on this post, only because everyone's approach to this can and should be different according to their own needs and desires.  If anyone is interested further, they can contact me or leave a comment and I will talk/chat/email with them privately about it.

Well, this was a long post, I sincerely hope that some of you will find some of the information in here helpful.

Joseph Galbraith

"But you don't "look" disabled..."

This is a difficult post for me to write, because this attitude is so prevalent today.  "You can't have autism...you can't have ACC...you don't "look" disabled."  I always come back and ask people "what the hell does "disabled" look like?"  The stereotypes that everyone with ASD or  ACC is "Rainman" is excruciating to bear.  (Although the real Rain man, Kim Peeks did have ACC like me.) The faces of the disabled are multitudinous and individual.  No one person with ACC or ASD is alike.

So, when I hear that ignorant comment "you don't look...." I have to remind myself that they are betraying their own ignorance.

It seems to me, that people that say this are trying to deal with their own discomfort.  They want us to be "normal" (whatever that is) otherwise, we, who look like them become a threat.  After all, if I look just like you, and I'm disabled, that means that you could be too.  The trouble is, is that this is the TRUTH...There is no "look" nor "luck" to being disabled.  An able-bodied person, could easily wake up in the morning "normal" and get hit by a truck, struck by a disease and become disabled.  Yet, those of us born with disabilities cannot wake up one day being able.  This is the hard truth that many do not want to look at, and find threatening.

People also look at me, because I drive, I can bathe myself, cook meals for myself and think "well, he can do all that, so he can't be disabled."  But the facts are, I can't drive at night or long distances, become easily confused driving, I forget to bathe and brush my teeth on a regular basis, and have great difficulty managing healthy meals of any kind...most able-bodied individuals are only comfortable looking at the surface, because they know if they scratch any deeper that they may not like what the find.

Then you have those that say that I would "wear my disability as an excuse, to be (lazy, stupid, moocher, want "attention") different.  I would sincerely challenge any of those people who think this, to live a day in my shoes.  Before I was put on disability in my mid-twenties I had tried MANY dozens of jobs...listening to the perverse voice in my head of my parents' obsessive Protestant work "ethic" that "you just need to try harder, you are just lazy."  I tortured myself with their voices for too long.  And if I was "lazy" how was it that I had close to 50 jobs on my SSA job record before I was given SSDI?   WHICH ONE of those jobs was I "lazy" at?

I don't "wear" my disability, I was BORN without a Corpus Callosum, I was BORN with autistic traits, I can't and don't "put it on and take it off" at will, although my poor sick parents would have me believe that.  Granted they didn't have any access to proper diagnoses and treatment for what I have when I was a child....but still.....  I don't "have" ACC or Autism, it is part of my identity, and on some level is who I AM.  When I was properly diagnosed, I could finally reckon with who I was, I could stop judging myself, start loving myself and start to discover the many and great talents that I DO possess.

So, if you are of "able-body" and "able-mind", please be careful not to judge, you have no idea the struggles another person goes through.

Joseph

ACC and Executive Function

The Brain's Executive Function

Today I want to write about ACC and Executive Function (EF).  EF is probably the most common symptom of a collosul disorder and is seen to one extent or another in all with the disability. EFs (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals.

While it can be broken down into larger groups, there are eight main areas of EF:

1. Impulse Control
   Those with weak impulse control are more likely to blurt out inappropriately, more likely to engage in risky behavior.
   
2. Emotional Control
   Those with weak emotional control often seem to overreact or react inappropriately to stimulus, and have trouble dealing with criticism.  When something has gone wrong, and you have weak emotional control you may have difficulty regrouping, refocusing and getting your thoughts together.
   
3. Inflexible Thinking
   Those of us with rigid thinking don't "roll with the punches."  We get frustrated if asked to think about something from a different angle than what we think is "correct", "right" or "appropriate" (in our thinking.)
   
4. Working Memory
   Part of working memory is verbal memory (like when reciting a phone number to memorize it), furthermore working memory is the part of the brain, that is like the RAM on a computer, manipulating information both that is inputed by the user (the environment) and taken from the hard drive (the memory) and manipulating it in the present.  We may have trouble remember directions, even if you've repeated them many times.  We need things "chunked down" into smaller doable pieces in order to function better.
   
5. Self-Monitoring
   Those with self-monitoring issues may be taken totally off guard by negative feedback from others, or receiving a bad grade or a bad performance review.
   
6. Planning and Prioritizing
   Those with weak planning and prioritizing skills will not know which parts of a given project are most important, may not allow appropriate time, or gather the appropriate resources for any given thing.
   
7. Task Initiation
   Those with this weakness, may have an idea of what needs to be done, but may have an "interrupt" between volition (the will to act) and action, they may freeze up because they have no idea where to begin a given project, being overwhelmed with it's many parts.
   
8. Organizational Skills
   Those of us with weak organizational skills easily lose our train of thought, our keys, our phone etc...

You will find in people with ACC and ASD that some EFs will be more developed than others.  For example, in my case, my weakest areas are flexible thinking, task initiation, and organizational skills....while at the same time I have developed substantial (but not complete) impulse control and emotional control. (More on the developing of EFs a bit later in the post.)  There are uninformed people that think children "grow out of" EF issues.  Nothing is farther from the truth, while true that coping and learning strategies can strengthen the EF skills of someone with ACC or ASD, in some cases EFs may even get worse with age.

If your child has a specific learning disability and/or ADHD, he or she may be eligible for an Individualized Education Program (IEP) or 504 plan that puts formal accommodations in place. These may include extra time to complete tests or a positive behavior plan to help your child improve impulse control in class.  For adults going to colleges and universities one can request and receive accomodations

What are some strategies to help?

There are many effective strategies one can use in when faced with the challenge of problems with executive function. Here are some methods to try:

Some general strategies  might include:

1. Take step-by-step approaches to work; rely on visual organizational aids.
2. Use tools like time organizers, computers or watches with alarms.
3. Prepare visual schedules and review them several times a day.
4. Ask for written directions with oral instructions whenever possible.
5. Plan and structure transition times and shifts in activities.
6. Create checklists and "to do" lists, estimating how long tasks will take.
7. Break long assignments into chunks and assign time frames for completing each chunk.
8. Use visual calendars to keep track of long term assignments, due dates, chores, and activities.
9. Use management software such as the Franklin Day Planner, a PDA (personal data assistant), Microsoft Outlook.
10. Be sure to write the due date on top of each assignment.
11. Organize work space.
12. Minimize clutter.
13. Consider having separate work areas with complete sets of supplies for different activities.
14. Schedule a weekly time to clean and organize the work space.
15. Managing work
16. 
    
17. Make a checklist for getting through assignments. For example, a student's checklist could include such items as: get out pencil and paper; put name on paper; put due date on paper; read directions; etc.
18. Meet with a teacher or supervisor on a regular basis to review work; troubleshoot problems.

I want to include this Three Brain-Based Teaching Strategies to Build Executive Function in Students but I don't want to rip it off, so I'm giving you the link, the information is EXCELLENT! This information will be really helpful to parents and their children's teachers.

On a very personal note, those with EF issues can struggle greatly with self-blame and self-esteem issues.  We tend to blame ourselves for our difficulties, thinking "if I just try harder..."  I grew up in a household largely uneducated about ASD, ACC and EFs, and I was constantly badgered with "you are lazy, stupid, crazy" "you just don't try hard enough" and the like....they bashed me with that, and I continued to bash myself with it, until I learned about ASD and this mysterious congenital brain defect (ACC) that I was born with.

Please be patient with us, and understanding....

I hope you find this information valuable,

Joseph

"Passing" in the Neurotypical World...

I want to write about the phenomenon of passing today...

Wikipedia defines passing as:

...the ability of a person to be regarded as a member of an identity group or category different than their own, which may include racial identity, ethnicity, caste, social class, sexuality, gender, religion, age and/or disability status. Passing may result in privileges, rewards, or an increase in social acceptance, or be used to cope with difference anxiety. Thus, passing may serve as a form of self-preservation or self-protection in instances where expressing one's true or authentic identity may be dangerous. 

Etymologically, the term is simply the nominalisation of the verb pass in its phrasal use with for or as, as in a counterfeit passing for the genuine article or an impostor passing as another person. It has been in popular use since at least the late 1920s...

I want you, as you read this, to think about that last emphasized bit:

" a counterfeit passing for the genuine article or an impostor passing as another person."

 Passing is a phenomenon that one sees, in regards to any number of classes.  Perhaps it's most thought of in regards to race, with African-Americans passing as Caucasians...yet hardly anyone considers  the plight of the disabled, especially those with "invisible disabilities", with neuro-developmental disabilities and the like.  Many African-Americans, if they were of mixed heritage and could do so, chose to pass as white.  And why did they do this?

To be included, to not be excluded, to feel safe, for equal opportunity and more...

The same is true of the disabled, particularly of those with neuro-developmental disabilities, those on the autism spectrum, those with Agenesis of the Corpus Callosum, ADHD, FAS, Fragile X Syndrome, Tourettes Syndrome and others.

The phenomenon of passing is what is behind ABA or "Applied Behavioral Analysis", otherwise known as "dog training for human children."  It teaches these children on a subconscious level that who they are is not acceptable, that they must behave in a certain fashion to fit in to the "normal" world.  Many of the children that are subjected to this "therapy" later in life have severe PTSD, not to mention having had their personalities suppressed and destroyed and not allowed to develop into what it otherwise would have.

While there are exceptions, those on the Spectrum and those with ACC most often have average intelligence...I would argue that the damage done to these individuals who have made themselves pass as neurotypicals is profoundly psychologically damaging.  I say this because we know, we are fully aware of both our neuro-diversity and our intelligence.  We also know that in this world today, in many or most cases we will not be accepted as we are, and we will not be given equal opportunity unless we fight for it.

Despite the ADA the world is slow to change.  People and corporations both push back against accommodations until their backs are against the wall and then they change.  The psychological and sociological attitude of the country has improved, but not nearly enough.  Very often, I and people like me are treated as second-class citizens, the butt of jokes and even scorn.  I had a roommate years ago that insisted if a disabled person couldn't do a job without accommodations, that  they didn't deserve that job under any circumstances.  I could never forget this warped mentality, because he was basically saying to me you are not equal, and if you're not equal you don't belong.

Even prior to my diagnoses (or I should say especially  prior to it) I was acutely aware that I was neurodivergent, and that who I was as a human being was simply not acceptable in "society."  I fought hard to attempt to appear as neurotypical.  In some ways, this was easy, but it entailed my repressing and suppressing who I was to such a degree that I lost myself in the process.  Prior to my diagnoses(es) I had simply given up on achieving any goals or dreams, considering myself less than others, not able of "hacking it in the 'real world .' " Once I received my diagnoses that changed for me (to a great extent at any rate)...I began to refuse to pass in order to fit in.  I began to demand that I was treated equally despite my differences.

This helped to some extent, but there have been and will always be those who attempt to "put me in my place" and let me know that I am "less than", that "if you can't hack it with the 'big boys' you don't belong."  When I have asked for accommodations I have even, at times been laughed at and told "you're not disabled" (they mean, I'm not in a wheelchair or some other visible disability) so you don't deserve any accommodations.

For the majority of my life, I was so concerned with, and so preoccupied with passing, so terrified of saying or doing the "wrong thing" and being "discovered" as neuro-divergent that this neuroses took up almost all of my mental energy.  The majority of the time was spent second guessing everything I said, and everything that I did.  My entire mental energy was consumed with "putting up a false image" one that would be accepted by those around me.

The thing is, in today's world if we choose not to pass, we run the very real risk of not being included, not being afforded our equal rights, not being taken seriously.

The real problem here is that of ableism. Ableism is the term used for a social ideology under which able-bodiedness or able-mindedness is privileged, often resulting in discrimination or social prejudice against people with disabilities. Ableism is based on the idea that a person is characterized by their disabilities, and that these disabilities make them inferior to the non disabled.

We live in a society that chooses to favor the "able" as "normal" and the disabled as abnormal or undesirable, pitiable and the like.  Currently there are laws that allow "charitable" organizations to run "workshops" for the disabled where they get paid pennies on the dollar, as little as $2 an hour to work, while these organizations rake in huge amounts of profits for their CEOs and COOs.  These laws are finally being challenged and eliminated, but not quickly enough.

For those like myself unlucky enough to be disabled to the point of not being able to work and end up collecting Social Security Disability Insurance (SSDI) we are relegated to a life of poverty, we are not allowed to own more than $2000 in assets...the system rigged in such a way that it is nearly impossible to even try to return to work on any level, without much needed medical and other benefits being stripped from us...the deck is stacked against the disabled.

I feel like I got sidetracked from what I initially set out to write about, but the above is most definitely pertinent to this discussion.

I wish I could open up my heart and mind for the world to peak inside for a single day.  I want others to know what being made to pass does to an individual's self-esteem and self-worth, what it does to one's hopes and desires...it isn't good. :-(

Such is my life as someone with ASD and Agenesis of the Corpus Callosum.  Such is the life of the many made to pass as neurotypical in a world that would not otherwise accept them.

Something I think about every day are those children that are aging out of the system into "adulthood."  I remember when I turned 18, and had the emotional maturity (at that time) of a 10 year old.  I remember the horrible things that happened to me as a result of this.  I would hope that all ACC and ASD parents out there would continue to fight for a more inclusive world, where their son or daughter could shine, grow, mature and develop into their own unique self and be a productive member of society.  Teach your child now that who they are is perfect, it is just right, that they need not change to be accepted by anybody.  That who they are has value in and of itself, and that they can leave their mark on the world...I promise you, if you do, you will not be sorry.