Wednesday, May 25, 2011

When it hurts to function

Most days at work I'm fine, if not happy, but there are days when it hurts to force myself to function normally.  Today was one of those days.  For the first two hours of work today I was in intense pain.  It hurt to talk and I mostly gestured when I could.  Normally I can look near faces if not at something on them, but today I wanted to look int the opposite direction and could barely stand to look at the upper bodies of others around me.  Every texture, every sound hurt.  Touching anything made me shudder, people talking sent spikes through my head.  It felt like the world was attacking me.

Every ounce of control I had was called in to keep me from crawling under a shelf and stimming for the next few hours.  The bad thing is that all my coping mechanisms aren't socially acceptable in public, so I tried to do things close to them that wouldn't be as obvious, like tensing all the muscles in my hand, or tapping my heels against the floor when I walked.  Those helped a bit, but what helped the most was singing and humming songs from musicals, which blocked out everything else and focused my attention.

These are the days that scare me and show that my careful control on the world around me isn't really control.  It's not that I'm really less susceptible to sensory overload, it's just that I have more sophisticated blocking systems.  When those blocking mechanisms malfunction, I'm just as easily overloaded as anyone else.

Thursday, May 12, 2011

Executive functioning: When it all collides

Like most people with AS, I have a few issues with executive functioning.  Executive functioning is pretty much the ability to plan and make decisions, as well as to change plans when necessary.  It's the ability set which not only allows for short-term planning like going to the counter to get a banana, peeling the banana and eating it, but also for more complex long-term plans, like saving for college or finding a job.  It is what allows us to refuse a food because we know we shouldn't eat it even though we want it, like if we're on a diet.

Now that I'm home from school for the summer, I help out around the house while my parents are at work.  Every morning, my mom leaves me a note with what she needs me to do.  Usually it's something like loading the dishwasher or putting away laundry, but occasionally it's more complex, like vacuuming.  This is where I start to get confused sometimes and I need her to be more specific.  If others aren't specific with me on a task, I can't get it done or I do it and then panic because I think I did it wrong.

This morning she left me a note asking me to call two dentists about appointments.  However, she didn't tell me a few details, so I'm still trying to figure it out.  This is how I'm executing it with my current information.

Thursday, May 5, 2011

Defining "High-Functioning"

Amanda Baggs wrote a great article which I recently read and recommend that you do too.  It brings up the point that defining "high-functioning" in Autism Spectrum Disorders is incredibly difficult.  Most of those on the spectrum have areas which they excel in and areas which they are very weak in.  Classifying someone as high-functioning just based on one or two characteristics is difficult, as is classifying the same person as low-functioning.  Nearly all of us have something which we're amazingly good at or can be seen as high-functioning in as well as things which would have us seen as low-functioning.

I am able to attend college and live on my own without support from any kind of aid.  Am I high-functioning?
I have breakdowns where I lose the ability to speak and can only scream and hit people. Am I low-functioning?
I can write and speak fairly eloquently and have a large vocabulary.  Am I high-functioning?
I become upset and will lash out or cry if my routine is interrupted.  Am I low-functioning?

If you just look for high or low functioning, you're going to get pretty confused.  I, for the most part, am very high functioning, able to hold a job, attend college, have friendly and intimate relationships and advocate for myself.  However, that doesn't mean that I'm no longer autistic.  I stim, bite myself, spin things, need lists, schedules and order, cry or laugh seemingly without reason and have terrible breakdowns - all things which point to autism.

The truth is that labels like "high-functioning" or "low-functioning" are very subjective, unscientific terms.  Every person will present their symptoms differently.  Alecta's autism is not Julia's autism or Chris' autism, even if we all have Aspergers.  While it might be good to give someone a general idea of how severe symptoms are, it won't give an idea of what skills are already there or what challenges someone faces.  The fact that I'm considered high-functioning doesn't dismiss the challenges I have in my life.

I don't know how we could more accurately label autism other than being specific about individuals.  We've come a long way from thinking of autism as a form of childhood schizophrenia, but we still have a long, long way to go before we can really accurately describe what is going on.