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

Posted on by Realistic Autistic
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.

Empathy, Autism, and the Intense World theory

Posted on by Realistic Autistic
http://www.the-open-mind.com/theory-finds-that-individuals-with-aspergers-syndrome-dont-lack-empathy-in-fact-if-anything-they-empathize-too-much/

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: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3010743/

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.

It’s been a week. (9/11/14)

Posted on by Realistic Autistic
I began my first day of work last week, Wednesday.  So just over a week from today, when I now write.  I’m exhausted.  I should have been writing each day about the new things that happened, stuff I learned, stuff I was bad at but might get better at… I just couldn’t.  I got home from work and assorted other activities each day and went right to bed.  Transitions are hard.  

The job is good.  The people are basically good, caring people.  They’re anti-corporate, in that they like sweeping impersonal company policies about as much as I do.  And like me, they play by the rules as much as they need to, and do what they can to make life easier for others despite it.  For instance, we need a filing cabinet moved.  It’s a big heavy filing cabinet.  We can’t move it ourselves, because that’s not allowed by corporate.  So a request has been put in, and there the cabinet sits, awaiting appropriate personnel to get around to it.  In the meantime, we grouse, but we don’t try to move it.  
I still don’t have full access to the electronic services I need to do my job, so I’ve been taking care of a project another person wants done.  So much filing.  Carrying heavy file folders stuffed full of information.  I have to carry it into another part of the building, which contains a school/day care for severely affected kids, up to age 18.  They can be violent, so it’s a little anxiety-provoking to walk in with an armful of files.  Once, when I was in the file closet putting things away, I heard loud bellowing and weeping through the door.  I waited for it to go away before I snuck back into my side of the building.  I’ve informed people that it should be fine, and am putting up a face to support that.  I have mixed feelings on it, though.  I don’t want to drop an armful of files onto any kid’s head, regardless of what they’ve done to me personally.  And I can’t help but feel a little kinship with them, despite that I was never that violent or disturbed as a kid.  Some of them are on the spectrum, too.
I read an article on several peoples’ experiences with working with disturbed children.  Much more disturbed children than are in my workplace building, I think.  You don’t hear a lot about these experiences, perhaps because they’re intensely depressing.  But I read it all, wondering quietly what made me different than them.  What made any human, really, different than them.  We call these children uncivilized when they scream and throw things, but you need only look into a domestic abuse situation to find that same behavior.  And in people who are otherwise trusted to drive motor vehicles, hold down a job, and interact with people on a day to day basis.  
It bothers me.  
There’s nothing I can do right now, I think.  I don’t have the training to handle the kids in the other side of the building.  If I want to become a speaker on autism, I don’t have the time, either.  But if I’m going to speak for people on the spectrum, I have to face that those people are people on the spectrum too.  I have to do my best by them, not just by the high functioning group of people I visit every month or two.  
I asked Ari Ne’eman, a few years ago at a conference, what we high functioning people on the spectrum can do for the lower-functioning people on the spectrum.  He didn’t really seem to know, but offered words to the effect of, “the best we can.  Ask them what they want, and respect their words and wishes.”  I have no better answer than this.  Every person on the spectrum is different.  To enter one person’s world, in order to see the way they see, takes an immense amount of energy and effort.  It’s hard, even if you know what you have to do.  The idea of needing to do that for thousands, even tens of thousands, of low-functioning autistics, is staggering.  I’d say impossible, frankly.  I’ll only live to 70-90, assuming no disastrous events.  I’m already more than a quarter of the way through my lifespan, and I spent much of that just trying to figure myself out and learn the rules of society in general.  
I don’t feel prepared.  Not even slightly.  
The building I work in is headed by a doctor, and she has mentioned, at some point, wanting my feedback about how the place operates.  She knows I’m on the spectrum.  In fact, she’s one of the reasons I was hired.  I don’t know what to say to her.  I don’t remember being as young as the kids she works with.  They max out here at age 5 or 6, because that’s all insurance will pay for in Michigan.  When I was that young, I was barely into elementary school.  I was already different, then, and alone because of it, but I was also already being bullied.  What do I possibly have to offer to the doctor?  She knows kids way better than I do.  Perhaps the only thing I know that she doesn’t, is that some kids are never listened to.  We treat kids like mice, you know.  They have no say in their lives, because they’re assumed to not have anything useful to say.  Too inexperienced.  Not enough knowledge of the world.  I remember being frustrated by that.  I had plenty to say, and people wouldn’t listen.  Perhaps some of it was naive.  Perhaps some of it was uselessly out of touch.  But would it have killed them to listen?  
I don’t know.  I’m a high functioning autistic person.  I have no idea what situations these kids come from.  I haven’t told the tutors I’m on the spectrum, but I feel like I should… and the same with the parents.  So that maybe they can see a better future.  But then I look at my own life, and wonder whether it’s really something to boast about.  I live in a crappy tiny apartment, work a single “real” part time job which doesn’t pay all my expenses, and spend much of my free time away from people.  
And now I hear people telling me I’m being too hard on myself, because that’s how predictive memory works.  Chris (my boyfriend) would tell me that.  My mother would tell me that.  Ann Mary would, too.  They’re biased, of course, but so am I.  I don’t know.  Maybe the illusion itself would be enough for those people.  They’d see me, in business casual clothes, holding a secretarial position like a neurotypical person would.  Answering phones with a calm, professional voice that has little in common with my real voice.  An illusion.  I bike to work to save gas.  My car is nearly worn out.  The professional voice is a mask, with a carefully trained set of responses.  The business casual clothes are an annoyance I have to put up with.  It’s all a pretty illusion.  Perhaps the illusion is enough.  At least until I can take center stage and give people an idea of who I really am.  
Or maybe the stage is just another illusion.  I try to be as real and as honest as I can be, but if celebrities, politicians, and stand up comedians are anything to judge by, the stage is a hard place to be.  Will I be strong enough?  I hope so…

On the sidelines of autism politics (9/8/14)

Posted on by Realistic Autistic
Today at work, there was a donation presented to my place of work by a big Internet provider.  Lots of people showed up to see the check and be in the photos.  I was there, but not as an invited guest.   I, the only person in the room actually on the spectrum other than the small child on display, was the guardian of the bathrooms.  Those doors are always locked, so they needed someone to let people in.  So there I stood, at the back of the room, watching as big and important people said speeches, made pretty noises about autism and hope for the future, and smiled endlessly in front of cameras.

I felt…  Well, it seemed like some of the people were there just for the good publicity.  The caterer came and kept me company after awhile, and we compared notes on these sorts of events.  He verified my observation and informed me that this was very common.  The event lasted about half an hour.  
I left after most people had filed out and my boss had informed me I was good to go.  As I walked the halls toward my belongings, I wondered about the situation.  All those apparently neurotypical people, and me there in the back.  It struck me as a sound representation of how autism matters are run presently.  The people actually on the spectrum aren’t in the spotlight unless they’re kids, or except in very rare cases.  It’s all neurotypical parents and therapists and teachers talking to each other.
This needs to change.  And I need to help change it.  We can’t be stuck on the sidelines while the world assumes it knows what’s best for us.  

Callback to high school (8/28/14)

Posted on by Realistic Autistic
This is the truest way I can express that my high school self is still part of me: that I’ve just slept about 4 hours, had a poor week of sleep before that, have just started the worst part of my period, and am still wide awake this morning preparing to meet unreasonable expectations of society.

Paperwork day was yesterday, and I was supposed to already have my TB test completed.  However, the only appointment they could get me was a day before that, and you have to wait two days to get the test read.  Therefore I couldn’t give them the paperwork.  Their predictable solution? “Well bring it to us first thing in the morning, then!” You can add the offended prissy popular girl flounce and sulk.  
So here I am.  Couldn’t sleep.  Up an hour earlier than I would’ve been otherwise, because I don’t know how long it takes to read a TB test, and I can’t be late for training.  Seven hours of training.  During which I will need frequent bathroom breaks, so I don’t bleed all over my nice clothes.
I’ve packed myself a sandwich and put on minimal makeup.  I hate the makeup.  It shouldn’t matter what chemicals I plaster to my face.  My face is just fine the way it is.  This training area isn’t where I’ll be working, though, so best I make a superficially good societal impression.  Or maybe it doesn’t matter.
Off I go to the clinic, PB&J in tow.  It’s seven hours of training after I get the test results.  They’ll probably feed us, but you can never tell if there’ll be anything for a vegetarian.

The search continues for a cure to eternal dehydration (8/27/14)

Posted on by Realistic Autistic
For as long as I can remember, I’ve been mildly dehydrated.  My lips are always chapped.  My skin isn’t quite soft and smooth.  When I was really little, my lips would crack and bleed, and I’d pick at them, ignoring the taste of blood.  I didn’t really care, all the way through high school.  I had more important things to worry about, like trying not to scare off all the neurotypical people*, learning the rules of society, and trying to figure out who and what I was.  

I still dealt with a lot of that in college, but then and afterwards, I had more time to enumerate the various abnormal things about myself.  Many of these I either can’t change or don’t consider a negative, but the dehydration is definitely a negative.  
I pointedly started drinking more, and mostly water.  Up to and in excess of the debated “8 glasses a day” figure.  The main result of this was much more frequent trips to the restroom: a side effect I could do without.  Once an hour or so after drinking a couple glasses just seems excessive.  Having read that petroleum-based lip balms actually dry your lips over time, I switched to alternative based balms, like beeswax.  
These measured helped some, but not enough.  I still had chapped lips.  Long hours in hot conditions at one of my summer jobs seemed to help, but the job ended and those hours were too unpleasant to consider for a full time job.  I went in for minor surgery at one point and was hooked up to an IV.  The experience was interesting, but not as interesting as waking up post-surgery to find I had normal-person lips.  I poked at them and idly wondered about salt and water levels, but several hours later, they had gone and I had my chapped lips back.
I tried experimenting with sports drinks for their salt, to no avail.  I’d more or less given up on the matter, until a friend gave me some herbal tea.  It was health tea, calling itself a detox and healthy liver function promoter.  I scoff at popular health trends, and “detox” just screams “health fad” at me.  But my friend didn’t want it, and I dislike waste, plus I like that friend a lot.  We share a fondness for tea.  So out of respect, I made myself a cup.  And promptly gagged, because it tasted very strongly of black licorice.  Yuck.  Stubbornly, I drank the rest and went back to work, trying to forget the taste as fast as possible.
Which is probably why it took me an hour to realize I felt rather bloated.  I was retaining the water I’d drunk, rather than it running a footrace through my system to await expulsion.  Curious, I drank more water and a second cup of tea (using the old tea bag).  Still nasty, but the effect stuck, and for several days.  For the second time, I had normal-person lips.
I talked to my friend, who knows tons about herbs, and she told me several ingredients in the tea might be responsible, but to try the dandelion root first.  So today after job training, I went to the grocery store and bought the only box of dandelion root tea I could find.  The effects of the “detox” tea aren’t as impressive as they used to be, which makes me worry that it was only a fluke, but there’s still an effect, I think.  In any case, this is my only lead.  I shouldn’t waste it.
*what?  People can be flighty.  One too many hints of “this person is really different from me,” and off they go, wanting the illusion of normalcy.  

Womens’ fashion in 2014: causing dizziness in 10 minutes or less (8/16/14)

Posted on by Realistic Autistic
I went clothes shopping recently at a department store, and had a rather unpleasant experience.  Not because the clothes sizes are basically decided at random, or because I hate clothes shopping in general.  No, this was because of the newest trend in women’s fashion.  “Busy” patterns are in.  Tight-knit lines, like optical illusions, reign rampant over shirts and blouses and dresses.  Diamonds and zigzags and concentric squares and circles over every square inch of every piece of apparel.  

I waded in, trying to find a nice solid blue button down shirt and a nice pair of black pants.  Ten minutes or less among the pages of an optical illusion book, and I felt ill, even dizzy.  My brain literally could not handle the complexity of all those pieces of clothing.  The dizziness lasted five minutes after I left the store, and then it finally abated.  Maybe I can avoid clothes shopping for the rest of the year…