I was very young when I realized I wasn't like everybody else. I remember being mocked and made fun of, as early as second grade. With ACC childhood (and sometimes adult) confabulation is a given. Confabulation is common with all young children, but as the NT child socially and emotionally matures they begin to differentiate between fantasy and reality, whereas with ACCers confabulation at this time can be even more pronounced.
For me, it was second grade when the penny dropped. I had magical visions of extra-terrestrials that would come to my beck and call when I activated my "magic belt" (it was a magnetic clasp belt, so to me it was magic.) I remember the children telling my teacher, Ms. Youngquist how "stupid" I was, that I was telling them "faery tails." To me though, they weren't...they were the world inside my head, which was just as real as the world outside of it. I remembering the other children jeering and making fun of me, and I could not understand why. This was my first inkling that I was different.
I have a multi-coloured multi-textured imagination, I always have. I would go away from watching television shows, I particularly remember a childhood favorite "Lost in Space." Long after the show was over on the TV this brightly coloured story-line would continue "out there" and I would confuse what was happening on TV with what was happening in real life.
I can vividly remember this "confusion" long into my junior high school years.
The thing is, with those around me not recognizing what was going on, as I matured my parents looked at me through an entirely different lens. I remember being 13 and my father labeling me a "psychotic liar," and I didn't even really fully understand what that meant.
As I matured my confabulation continued, taking on a different tone/aspect. Where my memory would fail me, my mind would come up with fantastic distortions of reality. The resistance and anger of my father only became more pronounced.
Taking into account that I was also a victim of childhood sexual abuse, and the trauma associated with that, my mind would constantly fly into a realm of fantasy in order to cope with what was done to me. Even though I was an exceedingly verbal child, I had no way of describing to my parents the abuse I underwent, I knew that they would not believe me even if I could.
I remember the 7th grade, running up and down the halls of the junior high school fighting imaginary monsters, and running with imaginary friends. This was more than my parents could or would handle and not too much longer after this I was placed in the "Archie F Hay Village School 'for the emotionally disturbed' " (I despise that title :( .) Rather than helping me, this "placement" made the problem only worse for me. My young mind gave up completely, trying to separate fantasy from reality...it simply was no longer exercised and stopped trying.
By the time I turned 13 this fantasy world in my head became morbid and dark, reflecting my life at school and at home with my parents. I would lay alone in bed at night, unable to sleep, for hours imagining "demons and monsters" and other imaginary creatures staring in through my large bedroom picture window. I would remain haunted by my mother's painting of a clown on my bedroom wall, thinking it was going to wait until I went to sleep and kill me in my sleep.
Not everyone with ACC has such profound confabulations, and even when they do it can largely end in childhood as it does with NT children. This was not the case for me. Whenever throughout my adolescence I was faced with a stressor, an emotionally untenable situation my mind would write into my memory a fantasy to deal with it. I remember at one point even trying to convince my parents that I was dying of a deadly disease (to their dismay.)
Today, as an (older) adult, confabulation still happens, although not in such fantasies. Where I have "missing pieces of thought or memory" due to inadequate memory formation or recording, my mind will make up the answer. As I am older there are certain cues that make me aware that this is happening, something I didn't have in childhood. If I absolutely insist something occurred a certain way, and those around me insist it did not, that is one obvious clue.
I can swear to somebody, in all honesty, that I had this detailed conversation with them only to discover through others that it never happened, or definitely did not happen in the way I remember it.
Now, factor in the gaslighting of my father, him trying to convince me I was insane, morally flawed, and evil...by the time I was in my mid twenties I was suicidal and had been hospitalized several times for the same.
For decades, not understanding my ACC I learned to hate and to judge myself, believing my father's
Imagine, if you will the relief I experienced when I was diagnosed with ACC...
Being the encyclopedic braniac that I am I immediately studied, learned and digested everything that was currently available about ACC. I went from being a victim to someone who for the first time embraced all of his self with unconditional (for the most part) love.
Being "trapped in my mind" and its great ability to imagine was much like the bird in the gilded cage... even though the door lay open before me, I could not recognize it...it was literally a living hell for me.
Strangely, having studied and learned about this phenomenon, I have been able to largely rein it in. As an adult with a mind capable of (somewhat) higher reasoning, I can recognize (many times) that my memories are not "in sync" with reality, and immediately lay aside the false information and try to correct the error.
Sadly, as an adult, this does nothing to cure the wounds of judgement, of misunderstanding, even hatred that is heaped on me by my own adult family...whereas I was trapped unwillingly in a cage of my imagination and ignorance, they choose to remain ignorant and unwilling to learn the truth about their son, their brother, their relation.
It will likely take me the rest of my life to reconcile, resolve and learn to let go of all of this. There is no change when an individual is unwilling to look outside of their own thoughts, emotions, imaginations...and this is true not just for me, the weaver of great stories and imagination untold, but for my NT parents who comfortably remain in their ignorance, and pain and suffering.
This is just one person's (with ACC) view into what it is like to live with this brain disorder, I know other's experience may be different.
I hope some of you have benefited with a glimpse into what it is like to live as this Boy With a Whole in His Head.