Glee and Aspergers

Sugar, the offending character

I don't want to sound like the oversensitive PC police, but I was offended by the portrayal of Aspergers on Glee.  If it were some of the other shows I watch, there wouldn't have been a problem - many of those aren't known for their sensitive handling of disability topics.  Glee, however, had no excuse for playing autism this way.

They've been applauded in the past for how they deal with disability issues, bullying, gay rights and other major controversies.  They have a recurring character on the show with Down Syndrome, played by an actress with the same disability.  They handled physical handicaps beautifully by having a character in a wheelchair and doing an episode where all the students in the Glee club had to use wheelchairs at school to understand how hard things were for their classmate.  They regularly show kids standing up to bullying and discrimination.  Why, oh why did Glee have to take this offensive, tactless route with AS?

For those of you who don't watch the show and don't know what I'm talking about, in this season premiere of Glee, they put in a female character who uses "I have Aspergers" as an excuse to do and say whatever she wants.  She was a horrible singer when she tried out to be in the glee club and constantly flung insults at the other characters while saying that the fact that she had (seemingly self diagnosed) Aspergers excused her.

Unfortunately, this is the way many people in the world see my disability, even though I don't act anywhere near how the girl on the show did.  They hear a single murmur of "I have AS", even in a valid situation where it's called for as an explanation and they just see the bad things from then on out, believing that I think it's an excuse to never better myself.  That isn't at all true to any who knows me.

Glee, if you're going to use a character on the autism spectrum, please give them the same equal, sensitive treatment that you have to every other disabled character.  High school kids with real AS already feel awkward and misunderstood enough, they don't need you trivializing their disorder.  Like my mom used to say, if you don't have anything nice to say, don't say anything at all.

How did you feel about the show and the AS character?  Do you think they're going to bring her back?

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.

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.

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.

Fearing ignorant authority figures

Tomorrow I'm going to my first protest.

Actually, let me rephrase that.  Tomorrow I am going to photograph a protest and I've never been to a protest before.  I'm not there to rally with either side, though I am affiliated with one of the groups taking part.  I'm going there to objectively capture images of the protesters and environment for my Digital Photography class final project.

There's a fair amount of anxiety running through me over doing this.  It's not that I'm afraid of crowds - unlike most aspies I know, I thrive on crowded, noisy public situations - and it's not that I fear for my safety too much.

My fear is that something will happen which will trigger a breakdown and make me go nonverbal or start screaming.  I'm afraid of the stares - I sometimes go on tiptoe and splay my fingers out at my sides to keep me relaxed.  Most of all, I'm afraid that I won't be able to pull out my cards which explain that I have AS in time, or that when I try to, the police will think I'm going for a gun and attack me.

My AS alert card which I carry to explain some of my behaviour

This is a legitimate fear.  People with autism are often seen as being scary or threatening when they're in breakdowns.  Schools use dangerous grips and holds to take down upset autistic kids and police taser adults who act oddly or are thought to be violent.  The sad thing is that most authority figures, especially in high-pressure situations, don't know what to do when they encounter autistic behaviour so I do have to fear for my own safety when around trained police.

I called my mom this evening and reminded her of what I'm doing tomorrow so that if something does go bad she won't be as terrified or confused as she could be.  I'm nervous about going into this.  It's a volatile environment where one simple misunderstanding could trigger a domino effect.  Yet at the same time, I know I need to do this.  I've always wanted to attend a protest, and here's my chance.  Cross your fingers for me, bloggosphere, I'm going in.