Tuesday, April 19, 2016

But "you don't look disabled"

I can't tell you how many times in my life I have heard this.  My first question is always "what the hell does 'disabled' look like?"  Many people have this skewed idea that unless one is in a wheelchair, deaf or blind or intellectually damaged that one is not "disabled."  I've often thought that this is because the truth of it is just too frightening for them.

This goes along with ableist terms like "high-functioning" or "low-functioning", the one an excuse to ignore the disability, the other to ignore and denigrate the abilities someone has.  Another one I hear is "mild" autism... what the hell is that?  NONE of these descriptions are medically based, but based on an ableist view of the world.

Functioning labels are used to deny agency and deny services, depending on which are used. I know some folk who might fit in both "extremes" of this meter simultaneously. This doesn't really apply (unless your goal is to "other" people).

If I sound angry on this post (as some have sometimes accused me of in my writing) I would clearly admit they are damn right (this time, anyhow.)

I function (minimally) ok on my own, but I will never be in a place in my life where I can thrive without the help and assistance of others.  I fought this fact for decades, for most of my adult life.  I had my own delusions about "rising above" my disability and becoming someone different.  That is because I did not like myself.  These days however, I look at things very differently. I do in fact have my deficits, while at the same time I do have unique skills and abilities and something to contribute to the world.  But I could not see my gifts, my skills and abilities, until I decided to look through the lens of me, who I really am.  I hear some ACC and ASD adults that are always in denial about their differences, and it breaks my heart, because I know that they know differently if they face their own selves.

Accepting one's own limitations is the first step in discovering one's own gifts.  Back in 2008 when I was finally diagnosed with ACC then ASD I experienced the biggest "AHAA!!!" moment of my life.  Up until that point I would strive, and work and fight to be and do things that I simply was not capable of.  This consumed all of my mental and emotional energy so much so, that I never succeeded in discovering my own skills and abilities that I did excel in.  After my diagnoses of ACC and ASD, I was able to put aside so many things, and delegate to others that would and could help me with them.  In doing so, I have now freed up so much mental and emotional energy that my gifts and abilities "jumped out at me" as it were, made themselves known to me.

This being said, almost daily, I am laughed at, mocked, denied, gas-lighted, and told "you are not disabled, you don't 'look' disabled, cut it OUT!" and worse.  The truth is I struggle,  I deeply struggle socially, intellectually, cognitively, emotionally, to understand and to fit in the world that surrounds me.

Even navigating such things as companies, bills, payments, doctors, insurance, etc...is far beyond what I am capable of doing, without help.  If I didn't have my advocate (call her "L") right now, things would be much worse off for me and I doubt I would even be in as good a situation as I am currently in.

I am so fixed by routine and ritual...and if one thing changes in it (the routine) my entire effort at building a habit (for example my ADLs) comes crashing down and I can no longer do it.  This includes things like showering, brushing teeth, laundry, housecleaning and more.

I'm 53 years old...and remain terribly lonely.  If it weren't for my therapy dogs, Boris and Natasha, I would quickly lose the will and desire to live and function, let alone thrive.

In any given social situation I am constantly second guessing myself..."did I say the right/wrong thing?" "Did I do the right/wrong thing?"  "Did I understand them correctly or did I get it wrong?"  Needless to say, this alone is so exhausting that I limit my social interactions to those people who know me well.  In the "real" world, I can only think of maybe two people that describes.  My entire "social" life consists of communication of Facebook, because it's safe and available.

I doubt I will ever have a meaningful long-term-relationship (the kind you would have with an intimate partner) because I've not met anyone who cared long enough to get to know me and all my quirks.

I'm always and will likely remain the "other" as long as I live...sometimes (often) I'm fully exhausted even at the start of a new day, nothing to look forward to....this is one of those days...I'm sorry for the rant :(

Monday, March 14, 2016

"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.

Wednesday, March 9, 2016

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

Wednesday, March 2, 2016

One Step Forward, Three Steps Back...no rest for the weary...

It seems as though my life is destined to be this cosmic and hectic dance, one step forward and three steps back.  If it seems as though my posts have betrayed frustration, anger, disappointment and disillusion lately, you are not off the mark by much. 

I have been thinking a lot lately, about the families I know with children that have ACC and/or ASD, and what those kids will face as they mature, their needs change and grow...I've come to the conclusion that today's world is still largely a hostile and inhospitable place for those with disabilities, those that are in any way different and neurodivergent.  While things have improved IMMENSELY in the USA because of things like the ADA  the facts are that the country and the people are slow to adapt to change.  I'm in a situation right now where I have had to ask for reasonable accommodations, because I was literally told that "if you are poor, you don't deserve the same services as our wealthy clients."  It has me shaking my head in disbelief.

Through my SSDI and Medicare I have quality insurance, but providers are free to reject my insurance and not see me, because they don't like the billing procedures involved...and so in a town with multiple hospitals and large clinics I am having trouble even finding a doctor who will see me.  The one physician I saw, refused to write my ACC into the record, and to treat me according to my diagnoses, being utterly dismissive over the issue of my disability.

WHY, in this time and place, when laws have been put in place to prevent this sort of thing, do I have to fight for the smallest scrap of dignity and equal treatment?

I have had people tell me "you can't be disabled, have autism, ACC doesn't mean anything, because you are walking and talking just like me."  People are too ignorant to understand that not all disabilities are visible ones.  I often dare people to spend just 24 hours in my brain; many if not most of them would be curled up in a ball crying in fear by the end of the day if they understood what I cope with on a daily basis.

Sometimes though, I get tired, I'm exhausted over fighting for my rights...

I have the added benefit today of having a caring Advocate, and some connections with Adult Protective Services.  Yet, I am often down on myself for my lacking the ability to do these things myself.  There are some with ASD and ACC (unlike myself) that are also intellectually disabled...and (I beg forgiveness if I offend any ACC parents of children like this) I often wish that I were born intellectually disabled.  Why?  Because then I wouldn't be so acutely aware of what I am missing out on, on what is "wrong" with me.

The most frustrating thing (to me) is to go through life around neurotypicals and see myself faltering wrong with you, you are just lazy, and all your problems would be solved if you just got a job and worked harder."  I have a really difficult time with this...I have a hard time accepting myself as I am, even in light of my diagnoses.  I (can) judge myself incredibly harshly at times (less so, now days, but when I do still just as damaging.)
and not being able to "keep up."  A lot of this goes back to my own parents.  They wholeheartedly worshiped the Judeo-Christian Work "Ethic." They believed (literally) "there is nothing

I have come a long way from this.  Proper diagnoses has helped relieve me of much of the self-imposed guilt and shame and judgment that I carried around all my life.  Yet, when I have to continually fight for myself, it wears me down, and I end up in that horrible mindset all over again.

This is definitely one of those days for me...

Wednesday, February 24, 2016

Routines, Schedules, and Daily Living...

<RANT>

I just had a horrible morning...

Now that Adult Protective Services has found me housing that is affordable on disability and is safe and secure I am working on recovering habits, routines, schedules and my ADLs.  In no way are these things easy for me.

For example, for nearly the past 5 months I have no brushed my teeth at all...firstly, I despise the sensation of something foreign in my mouth, I find it deeply disturbing.  But the thing is I have implant dentistry which must be kept clean or I could get a severe infection in my jaw pretty quickly...

About a week ago, I created a new routine; Wake by 6am, Coffee, Shower, Brush Teeth, Meditate.  I have done excellent for 7 days, but with today came a change in my schedule, I had to Wake without coffee and go and have a fasting blood test.  While I'd managed to do all those other things in order, they were (none of them) done well at all, simply because the coffee was "missing."  This has less (or nothing) to do with a caffeine addiction, as it does, building a routine.

Then, I get to the blood test and was told, "insurance wouldn't pay for it" (a ROUTINE blood test) and I just imploded.  I interrupted my morning routine for this?

That wouldn't be so bad if I were neurotypical, but you see any shift in my routine and it can completely undo the habit I have tried to create. And that's not all...the way my thinking works (outside of my control mostly) is that this routine is a failure and trying to rebuild it nearly impossible until I am in an entirely new situation.  I don't think it has gone this far, this particular time, but the fear and anxiety that it will is enough to derail me from even trying.

This is really, REALLY hard on my self-esteem because this has been the cycle I have gone through during my entire life...one step forward, four steps back (it seems.)

The smallest disturbance in my surroundings or routine from the "outside" is totally unnerving to me.  Part of ACC is having a really bizarre memory...I have been dubbed by many the "encyclopedia of useless information."  My ability to remember facts and pieces of information is huge, but my ability to remember what I had for breakfast, or to take the trash out or brush my teeth doesn't exist.  I completely depend upon the sameness of my environment and routine in order to get by in life.

And they wonder why I could never keep a "normal" job?

I am just SO frustrated in this moment, and I wish people could understand how difficult "normal-average" life can be for me.

This issue with routines and schedules pervades every single part of my life without question, the unknown, scares, confuses and confounds me, and I cling to sameness and abhor and change in routine, because without it, I wander in a wasteland of confusion and on a wheel like  a rat, never accomplishing anything new.

</END OF RANT>

~Joseph

Friday, February 19, 2016

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

Wednesday, February 17, 2016

A Day in the Life of...Relations, Friendship, Accommodations...

My one wish is that my neurotypical friends could spend a day in my shoes...no...in my brain.  I'm afraid that if that were possible some of them would be crawled into a corner of the room in terror for that 24 hours.

By this, I don't mean that to me my mind is that particularly terrifying (although it can be at times), rather that what I experience as an ACCer is so vastly different than a neurotypical's brain they would likely be in shock trying to cope with it.

Having been thoroughly tested, it is apparent to all my Drs, neuro-psychologists and the like that I do not share a set of skills that the neurotypical person finds second nature.  For one thing, I do not read/predict social cues from facial expressions, body language, and voice inflections the way they do...If I do so at all, it is hit or miss in its accuracy.  Even when I've known a person for a long time, I have trouble interpreting the intentions of their conversations...are they serious, are they joking, are they using irony?

Prior to my diagnoses, life was more difficult, because I had no way to relate to friends and acquantances these differences I share.  Even the most loving, well meaning friends, would become shocked, insulted, put off, irritated, exhausted at what they saw as unpredictable, innapropriate behavior/speech. Because of this, for many years of my life, I simply stopped trying.  I didn't understand WHY I couldn't understand, WHY I was deemed "innapropriate."  People that even loved and cared for me deeply often giving up, shunning me and wanting no further part of me.

Post diagnoses, there is still a lot of the same, with those I am not close with and do not know about my diagnoses.  Yet armed with the knowledge of why I am the way that I am, I have been able to educate those closest to me.  And while they still get exasperated at times, if they truly care, they are willing to look past these differences, or even accept them and embrace the way I am, even celebrate it.

Having the diagnoses though, has helped only marginally, in the case of navigating the world at large, dealing with and meeting new people on a daily basis.

Whenever I meet someone new (and very often even with those I know well) I am always in a process of second guessing whether or not what I said was appropriate, whether it would be recieved well.  I have a great deal of difficulty in knowing when it is appropriate to start conversations, end conversations...blissfully (or not) unaware if I am getting under someone's skin until after they fully implode and vent in my direction.

I often wonder if I had been properly diagnosed at a young age (and that they understood ACC and ASD back then) how I might be different today?  Might my coping skills and strategies have developed differently?  I cannot help but believe this is true.  The unfortunate matter, though, while there is elasticity of both brain and behavior, many of those skills can only be learned early in life during developmental periods.  This is why I stress with all my heart that ACC and/or ASD children be told about their differences, and early on.

Many parents of ACCers are under the illusion that there child is fully or "high" functioning (whatever that really means.)  Yet, the research done by Dr. Lynn Paul Kerling and others has shown that no matter what the IQ or "functionality" of the individual, those with ACC absolutely share certain cognitive differences, that are always present, even if coped with in a different fashion.  We have differences in our cognitive abilities, our memory processes, our social function...

Theory of mind
As an adult of 53 years old, a large part of my life remains personal development.  I have a meditation practice; I exercise Theory of Mind on a regular basis. ToM is something that both ACCers and ASDers can have great difficulty with, but when grasped and understood and worked can have profound transformative effects, for neurodivergent and neurotypical alike...Having said that, the basic "problem" will always be there, I cannot "grow" a Corpus Callosum, neither can I teach myself skills that are not inherently part of my neurology.

By the end of a typical day, I have expended far more brain power than a neurotypical, with far less accurate results...In short, life is exhausting.  In order for me to function optimally, I have to build rules, rituals, routines that I must stick to, any deviation in them means that I will not meet my needs and even at minimum my ADLs.  If any unforeseen event occurs to alter the rhythm of these routines, I can be thrown off for weeks, or even months before I can function optimally again.

So if you have a loved one with autism or with Agenesis of the Corpus Callosum or any other neurodivergent condition, please be understand, please attempt to view the world through their eyes with compassion, we are worth it!



Wednesday, February 10, 2016

"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


Sunday, January 17, 2016

The Pain of Loss, Stability, Friendship and Security, and those that would abuse it...

It has been a long time since I have written, and I apologize for that, best intentions aside...

Back in October 2014, I lost my best friend, been victimized by her family and subsequently have lost years of hard work and change and development in my soul since I learned about my ACC and ASD.  Since that time, I have had a number of people taking advantage of my, my naivete, my differences and deficits.

My friend Troya, immediately recognized my differences and accepted me regardless.  When we both discovered my congenital brain defect and my autism diagnoses it was the missing piece to the puzzle of my life and all the suffering I had been put through.  If it were not for her I would not have sought the medical treatment for my liver, all the way back then that set forward a series of domino events that ended in my ACC and ASD diagnoses.  And when all of that came to the fore, she supported my journey all the more and protected me from those who would try to hurt me, was my advocate and best friend.

Since the time of her death, I have faced not only the loss of someone who we considered ourselves brother and sister (I have that in her own handwriting) but the loss of stability, close friendship, security, advocacy, and much more.

She worked hard to bolster up my self-esteem, never letting me think less of myself.  I guess I could say that some of that did "rub off" on me, as today I am a stronger person, but the pain of loss is still unbearable.

People with ACC and ASD do not face change easily.  The disruption in routine, daily life and environment is profoundly disabling for us.  For an NT this is never a big deal, they change, they adapt and they move forward.  But for people like me, it is like going backwards thousands of miles and dozens of years in development.

I depend upon sameness in everything to cue me into daily habits and such that NTs find automatic.  This includes things like bathing, oral care, proper eating and feeding, organization of my life and surroundings.  Without that sameness I have no foundation in my life or ability to replicate even the simplest of tasks.

Since my friend died, I have been in a wilderness, with no foundation, nothing familiar.  She left me a small amount of money for my needs, which lasted a small amount of time.  I am truly grateful for that.  Yet, on Social Security Disability, I have to survive on money well  below the poverty level.  Less than $800 a month, to house, feed, take care of medical, transportation...

Because of this, I had to remain open to those out there who said that they would help me, be there for me, etc...but I have found many of them to simply want to take advantage of a vulnerable person.  I was moved across the entire country, because I trusted someone that said that they would "be the family I never had", would "pay half my housing, using the other half as 'office space'" be my In Home Support Services, help me "plug into services..." Instead, this person has manipulated me, taken my money, literally made me homeless turning off the electricity to where I was staying, never offering a penny in help but instead milking my own funds and bank account.

To say I am bitter is an understatement...

And there were those who saw and were aware that this person continued to do those things to me, but they shamed ME, trying to gaslight me and convince me that I WAS in the wrong for bringing this person's crimes to the fore.

All this has lead to my being put on the radar with Adult Protective Services, and I guess I should be very glad for that.  The police are now investigating the crimes against me, and APS, along with an advocate who lives far away from me are trying their damndest to get me housed and protected.  I am grateful to be certain, but why does it take being dislocated from one's housing for it to come on the radar that crimes are being committed against me? Troya's own family, after she passed continue a campaign of harassment that was seemingly never ending, but at the time I didn't have an advocate.  I do now, so I'm far less worried about them and other's who would seek to take advantage of me.  Having moral and intelligent and legal advocacy has gone a long way to help me.

I'm currently displaced, living in a motel paid for by APS and they are working full time to get me housed.  We are working to get me into housing for seniors and disableds.  I have been accepted but we are working on getting my service dogs allowed.  The hoops I have to jump through are just debilitating in themselves.

The really sad thing is, though, is that my story is not unique.  Having talked to other adults with autism and ACC, it is a sad reality that many of us are continually taken advantage of, abused, gaslighted throughout our lives.  Without exageration, I can think of at least a dozen others I have talked to, just in the past few months that have gone through or are currently going through similar situations to my own.

The developmentally disabled adult in our society is at risk of constant abuse.  People look at me and have the arrogance to say "you don't look disabled."  What the HELL does that "look like"?  The truth is it looks like YOU.  Those of us with so-called "invisible disabilities" are constantly at risk for this kind of treatment.  People think because I can drive a car (under certain circumstances) and wipe my own ass, that I am just like them, that I should be held to their standard.   It is too painful for them to imagine anything else.

ACC, as with autism is a very spectrum type disorder.   And it helps not to think of this as an A-Z or 1-10 phenomenon.  Rather than saying we are "low-functioning" or "high-functioning", that we have for example "A-F" missing (or F through Z) most of us are more like a block of swiss cheese.  I might have A and F and P and R, S, W and X missing, while I might even excel in some of those other letters.

So THIS is why I haven't written in so long, I've not had any security or stability in my life for a very long time... I am grateful to "L" (my advocate) and to Richard from Adult Protective Services.  I am grateful for the detectives investigating the crimes done against me.  I'm just thoroughly exhausted having to go through this.

And there has also been constant threats, gaslighting and abuse coming from a few people when I write posts.  This is why I have comments blocked expect when I approve them.  All those abusive posts are put into a file and available to the authorities now.

For all my faithful followers of A Boy With a Whole in His Head, I want to express my gratefulness, and ask for your prayers and well wishes.

I'll try to write again soon.

Saturday, October 31, 2015

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.
  • Controling 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.

My daily life is exhausting, to say the least.  I now live in a situation with little to no social contact, other than my church, and I prefer it that way...is it lonely?  Without a doubt it is, but I can't handle the pain of misunderstanding and conflict constantly at my door.

I have a dear friend in my life right now, who continues to be helpful in so many ways, but they dont' understand that many times when they talk to me, they sabotage me, causing me all kinds of grief.  They set me up with untenable situations, leaving me hanging, without answers, and I end up having sleepless nights and extremely anxious days, mostly because they have not learned how to communicate with me.  I really care for them, but this is crushing me, because I don't know how to get the point across to them that they are doing this.

All in all, life is improving, and I'm back to writing on my blog, so you'll hear more from me in the near future.  Thanks for listening.

Joseph


Tuesday, September 22, 2015

Come on over and sit a while...

Normal, average, self controlled,
Round peg in a round hole.
Born to be what I would be,
Many parts make up the whole.
Yet what you'll get is what you'll see;
Unique is what I'm born to be...

Special talents, flair and flaws,
Different every way with different laws.
All I can speak, and this I know;
Torn from mediocrities' claws.
God's gifts upon me are bestowed;
He the maker, He the cause...

One of many, only singular,
Constant dialogue, I the listener.
Ladder of clouds and thoughts my norm,
Internal, eternal, entirely insular.
Loving and innocent, friendly and warm;
Never at home always a visitor...

Won't you come enjoy with me,
This variegated world to see;
An orchestra imperfect,
Unless everyone can be...
Prejudice deserted.
Our differences; our very beauty?
It's so much more pleasant over here, why don't you come on over here and sit a while?

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 crazy" 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...


Thursday, September 3, 2015

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 Troya 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

Wednesday, September 2, 2015

My Apologies

My apologies for not writing in my blog for some time.   Much has been going on in my life that has kept me from the task.  I will write soon, but certainly by next month I will be writing regularly again.

Joseph