Tuesday, June 19, 2012

"In My Day, We Didn't Need All These Labels"

Ah, the good old days.  The air was clean, the economy salvageable, and we didn't need all these newfangled labels that the social outcasts of the present invent every time they speak.

"Why do you need a label?" is a senseless argument often brought up to dismiss someone's identity.  I see it all the time in reference to asexuals. "So you don't screw.  So what?  Why try and make it an orientation?" Apparently these people feel that having a name for a major aspect of yourself and a term to search to find others who feel the same way is somehow absurd.

But lately, my online focus has been autism spectrum disorders, not asexuality.  And in searching for a community to discuss and further understand my Asperger's syndrome, I have also found the less than pleasant contingent of society that finds ASD overblown, over-diagnosed, and generally an excuse for lazy parents to let their children run amok.  "Kids were just quirky and bratty back in my day," the argument goes.  "We didn't need labels or special classes or aides."

I didn't receive a diagnosis of Asperger's until the age of 22.  I grew up without assistance and without a label to help me understand why I didn't relate to my classmates.  Growing up, I was told that I was bratty and immature.  That I acted strange because I wanted attention and I wanted people to think I was special.  Once I finally received a label, I thought those days were over.  Finally, I understood the aspect of myself I had never had a name for.  Finally, I could find others like me and learn their methods of coping with the world around them.

I never thought that my label would give some even more cause to tell me that I just wanted to be "special."  I didn't expect that recognized signs of Asperger's would be dismissed as "quirkiness."

So to those who feel that I'm acting out because I want the world to notice me, I would like to share my life's story.

I have always had a massive vocabulary, even as a toddler.  Despite this, well into my teenage years, my response to things that angered or upset me was to sob and scream and lash out at anything in sight.  I knew so many words, but I couldn't use any of them to describe what I was feeling or what I needed to calm down.  I felt isolated within my own body, and I often cut and scratched myself because I was so angry that I couldn't communicate.  Even I couldn't understand why I had such intense and painful emotions, and so often.  I hated myself for it.

My parents sent me to time out.  They grounded me.  They spanked and yelled, removed privileges, sent me to the school counselor, did everything within their power to try and make me act like a normal person.  I have vivid and suffocating memories of being held down while I screamed and kicked.  My parents were far from the lazy, responsibility-shirking adults of skeptic lore.  I can only imagine how hopeless and exhausted they must have felt from day after day of dealing with me.

Like many on the autism spectrum, I am terribly uncoordinated and have poor fine motor skills.  My handwriting was completely illegible until the fifth grade, when I finally gained enough control to write clearly.  When my mother tried to teach me to write, she gave up and let me print letters the way I wanted, rather than the standard and correct way, because I would throw uncontrollable fits if she tried to correct me.  I couldn't figure out how to say that I was incapable of creating letters the "right" way at the time.  It hurt to try. 

It also hurt to try tying my shoes or zipping a coat.  I invented my own method of tying shoes as well, and again, it wasn't until the fifth grade that I learned to tie them so they stayed together for more than five minutes.  In the first grade, a teacher - not even my classroom teacher - deemed it unacceptable that I was unable to zip my own coat.  She made me stay in at recess, trying time and time again to work out the mechanism of the zipper, fingers aching and tears stinging in my eyes.  This wasn't fair.  I was trying, I simply couldn't do it, why was I being punished for something beyond my control?

I am incredibly sensitive to sounds, smells, bright lights, and textures.  "So what?" the detractors may wonder.  "My kid cried when he had to have eye drops too.  That's nothing special."  But I didn't just cry.  I flailed, I shrieked, I hid under furniture.  I would keep it up for hours.  I couldn't sleep with a clock in my room, because the ticking kept me up at night, reverberating in my ears like a drum beat.  Fire alarms gave me panic attacks, and horrible paranoia for days afterward.  What if it goes off again?  What if I have to hear that terrible noise again?  When shoes pinched my heels or toes, or if the collar of a dress felt slightly tight against my neck, I couldn't stand it.  It was all encompassing, the only thing I could focus on, and I would wail in agony - yes, agony - until I was freed from the pain.  "My kid doesn't like loud noises.  My kid doesn't like certain fabrics."  Well, I am not your kid, and I guarantee you that my reaction was light years apart from his.

But by far the worst aspect has always been social interaction.  Asperger's is so frequently mocked as something losers on the Internet diagnose themselves with to explain their lack of social grace.  I would love for anyone who makes that claim to spend a week or so trying to interact with me.  I am absolutely unable to read facial expressions, beyond those of the family members and few friends I have had my entire lifetime to study.  And even then, it's difficult.  In college, I angered someone so much that he stormed out of the room, leaving me to stare blankly, wondering when I had made him mad.  I had seen no sign of it in the past twenty minutes, yet there I was, alone. 

I can't tell when I'm boring people, which is often, because I can't tell that they don't find my favorite subjects as enthralling as I do.  I can't tell when people want me to shut up or when they want me to comfort them.  I have trouble grasping on anything other than an intellectual level that others have thoughts and emotions, so how in hell am I supposed to read them?

Contrary to popular stereotypes about Asperger's as an excuse, I have tried to learn to better relate to others.  I no longer interrupt or yell to be heard.  I wait my turn and force myself not to drag every conversation to what I would rather talk about.  But I still screw it up, and it still feels like a punch to the stomach every time I realize that I've done something wrong.  I don't mean to sound rude, bored, or elitist.  But I'm told that I do.  Once a friend's mother decided that I was trying to show off how smart I was while I talked in the car, and cut me off with a cold "We're not as stupid as you think."  I went home and cried for the entire day, vowing never to speak again in front of that woman.  Growing up, I could never figure out my classmates, but they could read me like a book, and delighted in saying the right things to bring me to tears.

I was evaluated by my elementary school's special education department.  But I had no cognitive delays, and in those days, autism wasn't as well known as it is now, and Asperger's was all but unheard of.  The instructors told my parents that I was strange, but that they couldn't help me.  And so I endured bullying and alienation every day, and my parents endured report cards full of teachers noting that I had no friends and no idea how to make any.  There were no therapies to help me calm down and adapt.  There were no aides to make sure I stayed on task.  And there was no label to help me understand why things that came easily to others were near impossible for me.

There are many other things that set me apart.  I haven't mentioned my compulsive behaviors, irrational but powerful phobias, intense interests, or so many other factors.  I don't feel that I need to.  I dare anyone who has read and really listened to the words in this post to tell me that it's all in my head.  Tell me that I'm just like everyone else and I would not have benefited from today's autism programs and assistance while I was growing up.  Tell me that I've gained nothing from my label apart from an excuse for bad behavior.

And if you can't do that, can you tell yourself that increasing diagnosis and treatment for autism spectrum disorders is worthless and lazy?  If you can, if you honestly believe that the majority of ASD diagnoses are bunk, well, what does it matter to you?  How does it hurt you if children are labelled and given assistance?  In the end, it's none of your business, and you might as well stay out of it instead of alienating autistics and their families and allies further.

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