Friday, February 27, 2015

On illusions, and the value thereof (10/6/14)

Appearances can be deceiving.  That's one of the first things schools and people try to teach you when they think you're old enough.  "Don't judge a book by its cover," they say.  It's funny how we place such emphasis on that teaching, and promptly ignore it three seconds later.  

Formal clothing, for instance, doesn't tell you the person is professional or serious about their job.  It's supposed to, but you can stick your head into a tech office on the West Coast and find people working just as hard (or harder) in worn out jeans and floppy old T-shirts. 

Beautiful or attractive people are assumed to be good and virtuous people.  But you need only look a centimeter into the lives of celebrities to find that they're just as fallible and human as the rest of us.  

I find a lot of illusions surround my life.  The most prominent is the illusion that I'm normal.  I cultivate that illusion, and so I'm most aware of it.  People get concerned and awkward when they learn they're talking to someone not normal.  It saves hassle and sanity on both sides if they never learn I'm on the spectrum.

I suspect I miss a lot of interesting conversations with this illusion.  A lot of chances to teach people I'm not so different.  That I'm still human.  But I also miss a lot of condescension, awkwardness, and frustration.  Given how much energy each day takes out of me, I'm okay with this, for now.

The illusion I think of most while writing this, though, is the one I suspect everyone cultivates to some extent: the illusion that all is well and under control in our lives.  A friend I respect said recently of me that I basically "had it made."  My boyfriend of nearly two years had finally moved to live near me, I had my own apartment, car, and part time job, and I had future goals and plans.  She was declaring, more or less, that my life was set, and all could only go well.  To which I could only laugh.

I see things very differently.  Yes, Chris has moved to be closer to me, but now he has to find a place to live and a new job.  Both very stressful things by themselves.  In addition, now we find out how well we function in close proximity all the time.  Tempers will flare.  Nitpicking will ensue.  I have particular ways of doing things, which will be disrupted by his ways of doing things.  My life was fairly high stress without all that.  Now it's even more stressful.  I love Chris and I'm glad he's here, but the transition is difficult.

My apartment is tiny.  It's a studio apartment, which means it had no bedroom.  Kitchen, living room, and bedroom are all packed into 375 square feet.  I don't have a lot of stuff, but I do have both a bed and a futon, and between those there really isn't that much room to put other things.  On top of that, my rent keeps going up $240 a year and my paycheck of course, does not.  It does not make for comfortable living.

I have similar comments about my worn out car, and my future is by no means certain.  Simply having a dream and an idea doesn't award you the attention and public interest to make it happen.  So while it outwardly appears that I have my life together, the reality is that I struggle even more to get through every day.

The illusion is powerful, though.  Because passersby don't know how much I struggle, they usually assume I don't.  That can be valuable.  As far as I can tell, the popular conception of people on the autism spectrum is a little kid, or a clearly disabled adult, perhaps accompanied by a helper.  I am neither of those, and there are more people like me.  Since we spend so much effort blending in, we often succeed, and so aren't on public radar.

If I can manage to begin speaking and writing about autism and life, I can begin to combat that stereotype.  Perhaps the parents of kids on the spectrum won't despair so much upon receiving the diagnosis.  I can only hope.

Tuesday, February 24, 2015

Empathy, Autism, and the Intense World theory

It's "common knowledge" that people on the autism spectrum lack empathy.  The reasoning for that is mentioned: they tested kids with autism for a basic form of empathy at an age that other children had it.  And those kids didn't have it.  From this, they assumed that all people with autism don't have empathy.

This is in stark contrast to the experiences of people on the spectrum, who complain more of feeling overwhelmed by others' emotions than lacking them.  People mainly defaulted to believing the interpretation of the studies, because as everyone knows, scientists are infallable human beings without a shred of bias.  Therefore people on the spectrum were walking sociopaths.  With no empathy to tie them to other human beings, why wouldn't you expect every gunman in a school shooting to be autistic?

Fortunately, not all scientists were so closed-minded.   The Intense World theory was first proposed by a pair of concerned parents of an autistic child, aided by another researcher. The article is here:

It's longwinded and technical, but the basic idea is this: People on the autism spectrum experience the world more strongly than others.  Sounds are louder and sharper, lights brighter and more distracting, words and intonations confusing, and others' emotions and reactions overwhelming.  

This, I feel, is a more accurate representation of autistic people than a strict assumption we have no empathy.  My life would be a lot simpler if I didn't have empathy.  I wouldn't cringe when I accidentally make someone's job or life harder.  I wouldn't consider the effect my words will have on other people before I say them.  Not having to do these things would save me a lot of time and care.  Unfortunately, I don't have a choice.  I do have empathy.  And I have a response to the assertion of that study.

People with developmental disabilities often develop mentally and emotionally at a slower rate than our neurotypical counterparts.  I personally still feel like a teenager emotionally, though mentally I feel like I'm 40 or so.  I suspect if they'd taken kids a few years older and tried the same test, they'd have gotten results saying autistic kids do, in fact, have empathy.

Friday, February 20, 2015

Numbers and words (9/23/14)

These are ICD 9 codes: used to identify particular disabilities, psychoses, and other oddities in people.  I use these at work.  One or more is assigned to each kid that goes into the electronic system.  

Perhaps you're wondering why I wrote those codes on my hand.  Those are my codes.  If I was in their system, each would be attached to my file, along with basic statistics like age, sex, address, etc.  Just that.  Nothing about my deep and abiding interest in people and the world.  Nothing about how music is intrinsic to my being.  Not a word about my chainmail hobby, my ability to fold an origami crane with my eyes shut.  Just those codes.  Just "what's wrong" with me.

The ink on my hand will fade, but it feels like it's etched into my hand.  Or maybe into my forehead, so I can't hide it.

Should there be a code for "enjoys computer games?"  One for "favors blue in clothing?"  I understand the system has to be impartial and impersonal, particularly in light of HIPPA laws, but it still stings.  All the kids I dealt with in the system today, they were people, not just names.  They had favorite colors, things that made them happy, triumphs and failures.  They're not just cold numbers, sterile diagnoses devoid of any actual information about the kid.

299.0 is autism.  I have that diagnosis, but no consuming special interests like many of my peers.  I'm not mind-blind.  Quite the opposite, really...  The deluge of what other people are or might be feeling can be overwhelming.  

The people at my particular workplace are all about getting to know the kid for who they are.  And that is of great comfort to me, thinking about this.  But I know not all of the workplaces in the company are like that.  There isn't enough time to get to know the people, or sometimes no real desire to do so.  Just a job to pay the bills.  Understandable, maybe, in this economy.  Nowhere near ideal.

Like much of the autism and neurodiverse world, it seems.