Friday, September 19, 2014

Teens Through Their Twenties ~ or transitioning to "adulthood"

There is a well known saying in the ACC community regarding our children.  "Expect their teens through their twenties."  The emotional and social maturity that comes with age in an NT takes much much longer in those with ACC. 

Often times a child with ACC will be largely asymptomatic throughout childhood, until roughly the age of 12-13.  In human neurology this is the time that the Corpus Callosum (in NTs) "revs up" or begins to function faster and more completely, making connections that were not necessary in insular childhood.  This enables NTs to develop a social consciousness and Theory of Mind and also allows for more complicated cognitive processing.  Those of us born cACC (completely without the Corpus Callosum (CC) and those of us with pACC (a partial CC) don't have the benefit of this structure to aid us in this normal part of human development.

As the brain itself is still quite plastic until the early to mid twenties, our neurology is still growing and migrating throughout the brain and body making new connections.  So even those with collosul disorders can do a great deal to adapt to the environment, but we can never grow a Corpus Callosum.  It is at this age (12-13) that many ACCers are seen to lag behind our peers, in terms of social development and cognitive abilities.  Our neurology continues to grow and adapt through our early to mid twenties, but without benefit of the CC our progress does not appear like that of an NT.

If the ACC child is prone to confabulation, it is likely (as it was in my case) that said confabulation continues throughout adolescence.  In fact in my case it only became more pronounced.  I honestly had very little grasp on the difference between fantasy and reality until my early thirties.  In the unaware eyes of their parents, they may seem to be liars, rebellious, "in their own worlds" and just not "going with the program."

It was also at this age (for me) that I myself realized I was not like other children.  My isolation only grew stronger.  I remember being as old as 12 and having a profoundly rich imaginary life.  I also failed to recognize that other children began to separate fantasy from "reality" and take a more objective and social role in the world.

By the age of 18 I was expected to "get a real job" and function in the world.  Out of school, still living with my parents I took County classes and became an EMT.  I could learn all the modules well, in fact I aced them and the examinations.  Yet, when it came time to generalize these skills and live them in the real world, it was apparent to me that I could not do so.  I remember (and still experience often) that my 24 hour day is in many ways similar to an NTs week (or even month.)  I had a very loose understanding of time, and really no concept of personal responsibility.  Well into my twenties and early thirties I was still looking for "who was going to take care of me."

While my own parents had limited access and knowledge to resources that could help me, they also came from the generation of shame regarding disabilities.  From a very early age, my father continually shouted at me "why can't you just be like everybody else?"  In my twenties I actually began regressing in social skills and cognitive function, without the umbrella of my parental guidance.  My parents not understanding eventually rejected me, and we are completely estranged to this very day.  

Without early intervention (or even later intervention and management) I began to be dragged through the mental health system.  Not knowing about my ACC nor my autism diagnoses, in 25 years I was (jokingly) diagnosed with nearly every major mental illness  in the DSM, and by my late twenties became suicidal.

Flash forward to all these years later, I have been the patient of the chief of psychiatry at one location for six years.  After my ACC and ASD diagnoses, she observed and worked with me closely.  The only other co-morbid diagnoses that "stuck" were an organic mood disorder (depression), ADHD, and PTSD.

I've worked very hard at relieving myself of the bitterness and anger of having been put through the mental health wringer, but sometimes it still gets the best of me.

So why, you may ask, am I telling you my story?  Not for sympathy, rather that you understand your adolescent child while adult in body, is largely still a very young boy or girl.  As neurologists have said, expect their teens throughout there twenties.  They will take more time than an NT, and even at the point of "maturity" may not look exactly like what you expect.

My own parents expected their cookie cutter model of adolescence and adulthood, and it only served to cause myself (and them) more pain and anguish.

It is important, that you as parents of ACC children begin in childhood to plan for their adolescence.  Who knows, you may be one of the lucky ones in which your child does garner a good amount of maturity in earlier age, but there is definitely no guarantee  of this.  Early intervention is not just for early childhood.  You must begin to plan your child's adolescence and adulthood resources now while they are still young.  You can make a difference!

It is too late for me, but it is not too late for me to make that difference in all of your lives.  It gives me a lot of pleasure and a measure of peace knowing that I am contributing to the well being of young people like I was, to hopefully create a better outcome in their futures.

If you find A Boy With a Whole in His Head beneficial in any way, I would ask that you share it with other ACC adults, parents of ACCers and educators and get the word out.  This would be much appreciated.

~Joseph Galbraith


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  2. I read your blog on "Learning to Pass" especially the part about repeative actions needed in order to "get it". I was diagnosed about 3-4 years ago with under/undeveloped CC - I turned 60 this past year. I graduated from high school, took some college courses, held down a Federal Government job for 40 years -- going from a clerk typist to a Contracting Officer. I'm stating all of this because looking back I remember that I had difficulty in learing how to tie my shoes, and also how to make a bed (hospital corners). My step mother wasn't patient with me, calling me stupid, etc. It wasn't until my diagnosis that I could understand what was happening to that little girl so long ago. I am amazed that I have been able to accomplish so much in my life, when the situation could have been so much worse, and I give my thanks to God for that. Ginny B.