Thursday, March 5, 2015

The Politic of Change, Sameness & Inconsistency...

We live in a world of change; nothing stays the same...in many ways this is the bane of my existence.

On some level, all people resist change, yet those affected by autism and/or ACC resist it with all their might (in my experience.) This is also complicated by our (seeming, by others) inconsistencies.

I imagine it is frustrating for our neurotypical friends and parents and the like, more so, I dare say for us with the condition.  I have often explained the inconsistency like this:  I will tell you with conviction that "I HATE broccoli, would never eat that garbage, I've ALWAYS hated it, and I COULDN'T imagine eating it" on a Friday, you come visit me on Monday we go out to lunch and low and behold I'm eating broccoli, and I'll say "I love broccoli, I can't get enough of it, I can't imagine life without it."  Now, I know that this is a silly example, but it does transfer to how we can appear to others.

In my case, I will hold to a religious, political or philosophical position, even fight to defend it, then another time I might hold exactly the opposite position.  This has got to be confusing to those around me, but it isn't to me, nor is it a contradiction.  I will have the typical autistic obsession on a given thing for a long time and then a switch flips in my head and it becomes something else.  Then, all of the conviction, all of the energy and commitment to the previous way of thinking or seeing something is completely supplanted by the new obsession/way of doing and seeing things, and I can no longer even imagine the old way.

So, on one level there is a fluidity in my brain and personality, although generally speaking I am not in control when the "fluid changes."  I live with a great deal of relativity on a certain level, and when faced with aggression, confusion, frustration I am apt to change positions on a whim...all appearing consistent to me while to others appearing confusing and incongruent.

I am resistant to change of any kind.  Be it good or bad, difference makes me feel very uncomfortable.  Even the foreknowledge of positive changes and moves evokes tremendous anxiety in me.  So, in some ways knowing in advance of negative things is less troubling, as I can work, I can fight, to change it.  Yet when I positive change is coming, I still have tremendous anxiety about it.  It's known that ASDers overthink things, and I'm sure it is true of ACCers as well.  When I have positive plans for change my mind races, overthinks, confabulates futures that do not yet (or may never) exist.  The end result is complete emotional exhaustion.

One of the major ways I combat this is to try with all my might to stay focused in the present moment.  It isn't always effective, but it is the best thing I can do to not enter a loop with my imaginative mind that leads to anxiety, frustration and depletion of any and all of my emotional energy.

I can be so stuck on sameness and having things presented in my life in exactly the same way, that when I learn a task, and learn it in a certain way, it only takes a single variable thrown in the mix for me to unlearn that task.  To an outsider many of these things might appear as OCD but I (personally) think it is a coping mechanism to deal with our memory encoding problems.

For example, when I do dishes, I must do the glassware, the dishes, the utensils and pots and pans all separately.  When I do the utensils, I will do all the forks, then spoons, then knives, (in whatever order) but will not do a fork, then a spoon, another fork, a knife.  And then each must be stacked separately.  The knives must not be put in the dirty dishwater because I know in my absence of mind I am likely to reach into the sink and cut myself badly (I have done this.)  I have IHSS, (in home support services) that help me with household cleaning, cooking, and order.  I will insist that they do (for example) the dishes in exactly the same way as I would do them, and if they didn't, I would do them over again, or worse let those dishes sit in the drainer and not use them for a long time.

This makes my life really very complicated when it comes to my ADLs.  IF I remember to do them at all, I have to do them in a certain order, and a certain fashion, and if anything interrupts or changes that order I will "loose" that habit for a long period of time.

The most obvious example that comes to mind is brushing my teeth.  All of my life I have had difficulty in "remembering" (processing?) the task of oral care.  I usually want to do it in a certain order, and also having sensory issues that make the task even more difficult.  I really dislike the feeling of anything against my teeth, and even more hate the feeling of dental floss.  When, a year ago I moved to my current location, I had up until that point, maintained an oral regime that I kept consistent for about 6 months.  This included using a water flosser with specially prescribed medication (I have dental implants, having lost most of my back teeth by my twenties, and both the water flosser and medicine were prescribed and deemed necessary because of my inconsistency) and where I would not consent to brush my teeth if I had to use floss, I worked with a dentist who had success with special needs clients and helping them learn consistent habits, for about a year, the water flosser and sonic brush made the task tolerable.

Yet, a month after I moved here, my flosser broke.  As they are very expensive and I'm on Social Security Disability as my only income I could not replace it.  So I stopped brushing my teeth altogether, except perhaps once every couple of weeks, until many months later when I had the extra money to buy a water flosser.  I am sorry if this example grosses you out, but, certainly not all with ACC have this issue, but I can guarantee that quite a few are probably not all that different than I am.

The thing is, you can transfer this inability to cope with change in a multitude of things in my life, from the most mundane to the most impactful.

Household moving, for example, while stressful for many is practically intolerable for many with ASD or ACC.  Even in the very best of situations it provokes an anxiety to be reckoned with.

It is as if the great factor called the unknown allows my ACC brain to start spinning out of control.  In just ten minutes, I am capable of fabricating dozens (if not hundreds) of possible scenarios.  In the right context, this is quite a gift but someone with ACC generally does not have a switch with which to shut this off.  Furthermore, our confabulations for all extents and purposes to us, are real things.  While cognitively we have the sense "this is my imagination" in reality we still have a great deal of difficulty not accepting these scenarios as real.  In many cases in my brain, they are in a sense "happening" as I'm imagining them.

Hence, my insistence that the major tool to combat this is to stay in the present.  I know often my therapist would "bring me back" by examining my imagination from a cognitive standpoint.  She would often remind me of the reality of the present situation, and that more or less what I am thinking about it are only possibilities, but not reality.  Often my confabulations occur because I really don't have a solid grasp on all the facts of the present situation, so she would rehearse with me, what is actually going on in the present time.

So, I would say to an ACC parent, that if your child is not wanting to do something, they are not (necessarily) being stubborn or indignant, there may be something else at work there.  I know it can be very difficult for us to express our thoughts to others.  Even today at 52 years old, when I am in the midst of this turmoil, that I can lack the ability to describe my internal process.  What you see here in written form is a skill that I have developed over decades of practice, yet often to describe the same thing to you verbally (in the moment it is occurring) is fraught with difficulties.  As I have said many times on my blog, encouraging skills that can evoke ToM (Theory of Mind) are likely the single most important skills, or at any rate foundational skills upon which to build positive changes in the life of an ACCer.  I recommend DBT and other mindfulness-based skills as they, in their very conception, are designed to develop ToM.

I hope you have found what I have written here helpful and welcome your feedback in the comments section and/or on Facebook.  Thank you for taking the time to look inside the mind of someone born without his Corpus Callosum.

~Joseph

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