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