I am not a disease (8/25/14)

Posted on by Realistic Autistic
Today I finished reading accounts of parents that have kids with autism.  I was struck by how often the parents seemed to think their kids’ lives were over.  Like “that’s it, you’ve got autism” is “that’s it, you got cancer” to them.  Your normal life is over, no chance at having any normal life anymore, everything is now autism-life.  This is perhaps understandable, given how little the average person knows about autism.
I, however, am feeling a little put out.  I am not a disease.  I’m not something to recoil over, to desperately throw cures at, to pity for existing.  Honestly, would you try to cure someone of African heritage of their beautiful darker skin?  Their genetics gave them that skin, mine gave me my brain.  I don’t see the difference.  If either kid, African American or autistic, has trouble in school, you try to help them get through it.  You take into account their background and try to see how they see.  Live in their world a little, to help teach them to live in yours.  
I’m about to start a job that includes passing interaction with parents of very young autistic kids.  I hope my presence and existence can be some kind of reassurance, and maybe a learning experience.  Your kid’s life is not over.  They can have a future right alongside all these neurotypical people.  
As for me… I don’t want your pity.  I want a fair chance at the world.

Bonus blog entry: a study with brain scans and autism

Posted on by Realistic Autistic
http://arstechnica.com/science/2015/01/the-connections-in-autistic-brains-are-idiosyncratic-and-individualized/

A friend linked this to me, and it was sufficiently relevant to include here.  This may explain why the saying exists: “If you’ve met one person with autism, you’ve met one person with autism.”  It’s awfully hard to say how any given person is going to be affected by having autism, because the effects vary so widely.  This study compared the brain scans of adults on the autism spectrum with neurotypical/not yet diagnosed* adults.

The full article is, unfortunately, paywalled, but the summary itself is worth reading. 

Relatedly, if anyone wants to finance a few brain scans of my brain for science, I would be interested in getting them done.  It’d be nice to have an idea of what parts of my brain are connected better and worse than normal. 

* “Not yet diagnosed” is my favorite way to refer to neurotypical, or normally-developing humans.  As opposed to humans with autism or other pervasive developmental disorders.  Using this terminology rather than “normal” or neurotypical, acknowledges that just because you’re not on the spectrum or don’t have a diagnosis doesn’t mean you can’t have problems or eccentricities.  It also acknowledges that diagnostic criteria change as our understanding of human beings changes.  Finally, it acknowledges that there are a lot of undiagnosed people running around that could have a diagnosis but either can’t afford the testing, don’t realize there’s something different about them, or do realize but don’t care to formalize that knowledge. 

An overabundance of pretzels (8/25/14)

Posted on by Realistic Autistic
I make a habit of being nice to the flight crew on airplanes.  This is mostly out of the politeness my parents taught me, but also because I recognize the staff as humans with lives.  Today I’m taking a “nonstop” flight with a stop at a different airport, and so got to interact with the same head stewardess twice.  She’s distinctly more well off than I am, listening to her talk about her life, but she’s not snotty or uppity about it.  I should point out that I am not personally engaging her in much conversation, but merely listening in to other passengers do the hard work of not sucking at talking, pausing, being entertaining, making the correct faces, and thinking of good responses.

So that aside, this is Southwest Airlines, where they pointedly do things differently than every other airline and make jokes about it too.  One of those things done differently is consistently friendlier staff and better service.  I presume being allowed to snark at your passengers and make lighthearted comments about deadly serious safety protocols is good for the soul.
This is the second flight, and so I’ve received my second dose of apple juice and second round of snacks. They offer both peanuts and pretzels here, which makes me worry about people with peanut allergies.  But I vastly prefer peanuts to pretzels, so even when they hand out one of each, I’m happy enough.  Recently the head stewardess came by with seconds for snacks, and all that was left were pretzels.  Now, when I get home, I’m going to get a ride from the wife of a friend who loves pretzels, so I accepted with a yes please and standard thank you, figuring I could send them with the wife as an apology for co-opting their together time.  I put away the extra pretzels and settled down.  Not a minute later, and I hear, “would you pass those to her?” and I was promptly handed two more packets of pretzels.  Of course I said thank you, because there was no reason other than generousity that she would be passing me more pretzels. 
I don’t really hate pretzels, but I really wish they’d leave them out of snack mixes.  A couple jobs ago, I had a small snack drawer and all my snack mixes seemed to come with pretzels.  Sometimes two kinds of pretzels, if they’re being sneaky.  I got into a friendly disagreement with my friend about the existence of those pretzels in my snack mix, which finally ended with me saving all the pretzels from several months of snacks, mine and my coworkers’, into a gallon bag.  I then snuck the bag onto their porch and messeged them five minutes later to find the surprise. Suffice it to say, my friend was thoroughly amused and thankful for the bounty of pretzels.
So now I have four packets of pretzels from the airline.  I think I’ll tape them together, give them to her, and tell her that this is all her fault, because if it weren’t for pretzel-loving people like her, they’d just serve peanuts like sane people.*
*Yes, I’m kidding.  Yes, she’ll know I’m kidding.  Please don’t kill me, people with peanut allergies.  The pretzels made me do it!

Lady with the scarred cheek (8/25/14)

Posted on by Realistic Autistic
I’m sitting at Hartford airport facing a lady of African descent.  That wouldn’t be particularly abnormal, but she has four parallel slashes down one side of her face.  Too regular to be passing accidents.  I’d have missed the detail entirely were it not for the fact that her scarred cheek is facing me directly.  Some of her body language is tailored to hide it.  She leans on her hand, which covers that cheek.  Leans forward with an arm or wrist covering the scars partially.  A sign of shame, or just of discomfort?

I wonder what her story is.  I’d ask, but I know better than to accost a random stranger about something like that.  It isn’t always a fatally rude move, but in a situation like this, I don’t think I could pull off the easygoing, slightly concerned air required for any possible non-hostile response.
Perhaps it was ritual scarring.  She speaks a nonEnglish language.  Perhaps an accident with mechanical equipment.  Her three kids are unscarred, and also speak with an accent.  Slight, mostly.  I don’t have trouble translating the words I can hear.  I’m not a very good eavesdropper, though.  Every passing noise drills into my sensory perceptions.  Something keeps dinging, for instance.  Like an elevator telling you the car is there, but every few seconds, and unpredictably.  Announcements come over the PA system.
The lady with the scarred cheek going to Baltimore, not Grand Rapids, so I’ll probably never see her again.  I hope she’ll be okay, and safe.  She seems happy, but that’s no indicator of the rest of her life.

a new part time job (now with regular paychecks!) (8/22/14)

Posted on by Realistic Autistic
That title sounds excited.  My actual mood is more close to “terrified.”  Is terrified a subset of excited?  Maybe it still works.  A few days ago I received a job offer for a secretarial position (administrative assistant, because we can’t call them secretaries anymore…) at Hope Network’s Center for Autism.  Hope Network is a large organization devoted to helping people with disabilities function in society.  This job itself seems mostly simple enough.  16 hour week, 4 days/a week for 4 hours, starting annoyingly early in the morning and going ’til just before noon.  (Any time before 8am is annoyingly early).  Phone answering, data entry, scheduling appointments, that sort of thing.  Actually, I’m hilariously overqualified.  I have a minor in a cross between computer science and business and a degree in psychology, and all they wanted was familiarity with MS Office and a high school diploma.

But I was describing my terror.  Next week looks like this:  Monday I return to Michigan after a couple week visit to CT for family reasons.  Tuesday I go do a drug screening and desperately unpack and pretend I’m not terrified, because Wednesday I spend several hours meeting and greeting people at Hope Network.  Thursday I go into intensive training for Hope Network’s practices and “how we do things” etc, for SEVEN hours.  Friday I spend four hours learning how to do first aid, so even more new people.  And after all that exhausting people-intensive stuff?  Saturday I go to a bachelorette party and get no sleep.  That’s a lot of chances to annoy, upset, worry, or frustrate people.  At least the Monday after all that is Labor Day, but after that I do another 7 hour stint, and the day after I apparently start work.  

Except for the week and a half through the emotional and cognitive wringer, this is a good development.  Or should be.  Most of my present part time jobs do not include any form of job security.  My pay is variable, dependent on other peoples’ schedules, etc.  Any money is better than none, because bills tragically do not pay themselves, but it’ll be nice to have a regular paycheck coming in every week or two.  The downside is that large companies like Hope Network often have very strict, bureaucratic policies.  I dislike brittle systems.  Often I don’t fit into them.  I had that problem at Walmart, when I worked there over the summer.  I was so different than everyone else, they didn’t understand me and didn’t try.  I certainly hope that Hope Network will be different, considering their focus, but only time will tell.  
I do find the concept of having an autistic person at the front desk of a place called “Center for Autism” amusing.  I’ll mainly be dealing with parents, as the kids in question will be 5 or younger.  But it’ll be a good experience anyway, I think.  And it may reassure some of the parents to see a functional, apparently healthy person on the spectrum handling a normal job.  I can’t personally vouch for any of the therapy they do in the building, because I wasn’t diagnosed until midway through college.  Hard to get therapy if no one knows you need therapy.  But still, I do know their ABA (Applied Behavior Analysis) is proven to improve functioning.  Maybe that’ll be enough.  
Maybe I’ll be enough.  

Weddings: joyous (and trying) occasions (8/16/14)

Posted on by Realistic Autistic
Today I attended the wedding of my boyfriend’s older brother.  My boyfriend, Chris, was the best man, which meant I was involved in the preparations and rehearsals.  I even ran the Livestream of the wedding for people who got stuck in traffic or couldn’t make it.  I’m pleased to report the Livestream was apparently excellent quality, despite the technical difficulties.  You could see all the people, including the patient musicians, and hear all the words being said.  This was actually a feat, because I was back up in the balcony, trying desperately to hold still, not jiggle the camera, and stabilize the spotty wifi by sheer force of will alone. The wedding itself wasn’t actually that bad.  It was stressful trying to set up the webcam and get the right angle and fuddle with the shoddy wifi, but once everything was set up, it was just a matter of keeping the setup running and hitting “start” at the right time.  It was the reception that was painful.  It’s no surprise, perhaps.  All those strangers, barely familiar faces you should recognize, all the social etiquette.  Besides Chris’ family, some of whom I’d never met (and was promptly introduced to… ugh), there were all of the bride’s family and various friends.  
The bride and groom were kind, and put me at a table with people I knew and appreciated.  I’ve had other weddings where I’ve just been amidst people I didn’t know and spent a lot of time trying to pretend I didn’t exist.  In any case, Chris’ family is… enthusiastic.  I was flagged down by a relative I’d met before, who promptly shepherded me to a new table full of her children.  That was the most awkward 15 minutes this week, if not this month.  In addition to trying to remember social etiquette, I had to shout to be heard over the overpoweringly loud music, and strain to hear responses.  
Apparently no one told the sound guy that people like to hear each other talk.  Well, most people like to hear each other talk.  By the middle of the reception, I wanted to hide in the carefully manicured bushes outside the building.  To be clear, both families were very nice, the bride and groom were respectively beautiful and handsome, but I was oversocialized by the time the first two hours were done.  Oh, and the reception lasted four and a half hours.  
Besides the earburstingly loud music and the extreme amounts of sociable people I couldn’t reasonably escape, there was my attire.  I wore a dress.  I despise dresses.  This is the first time I’ve worn a dress in years.  I did so out of respect for the groom and his family, but I am feeling it now.  Dresses restrict movement and blood flow, and between that and the fancy shoes, I have sore knees, a hip out of place, blistered feet, and a very sour mood.  
Chris kindly took me for a walk, mid-reception, so I could clear my head and feel less like a sardine in a can.  We both needed the break.  Too much flash photography, too many people talking, too much loud music.  At the end of the reception, the music was a little too loud from two rooms away.  Chris had actually gone and turned it down on two separate occasions… even some of the (presumably) neurotypical people were complaining.  Y’know, politely.  
The bride and groom danced beautifully, though.  They’ve both had years of professional lessons, and it showed.  They did some very fancy things, spins and partings, maneuvers I don’t have words for, all of it smoothly and romantically.  I was a little jealous.  I’ll never be that graceful, I think.  My gifts and skills lie elsewhere, I guess.
I’m immensely tired now.  I had to write this down before I collapse in bed, though.  I think Chris’ family probably won’t know for years how hard this wedding was for me, but I’d like a record of it.  It was a pleasure to attend, but I am now utterly weary.  I could sleep for a week.  

Manzano bananas + Where Am I Eating? (8/9/14)

Posted on by Realistic Autistic
These are Manzano (apple) bananas.  I found them at a fancy food store I sometimes go for rarer foods I eat.  Normally I’d have walked right by, but I read Where Am I Eating? recently and it had a section where Kelsey hunted down where bananas came from.  One of the really cool things he mentions (seriously, go read this book) is that we eat mostly one kind of banana, called the Cavendish.  Actually, he mentions trying a small banana so sweet, it might be considered candy.  I’m not sure, but that may be the very variety of banana I’m holding now.

These things are tiny.  They’re maybe slightly longer than my longest finger. The usual bananas in the store are at least the length of my whole hand (7″) at shortest, if not a hand and a half.  They make me smile.  

They also make me wonder about the people who harvested them.  I suppose it’s much the same as the Cavendish operation… These were more expensive than the Cavendishes, by about 50 cents a pound.  But still.  I hope those people are okay.  Maybe even happy I’m trying the Manzanos?  I may have had one already.  It was hilarious underripe.  But even startchy, as underripe bananas taste, it still tasted different.  I bet the ripe ones will be completely delicious.  
These new bananas aren’t my first new experience for the day, though.  My Saturday morning obligation flopped, so I was able to go and help with a food distribution thing this morning instead.  It was… hectic.  This was a near-record day, with 170ish people coming to get food.  The food was… odd.  You know in food drives, they ask you to give canned things?  None of this was canned.  I guess it was excess from various vendors.  There were pineapples, 2 lb. bags of frozen chopped sauteed onions (yes, that’s a thing. No idea why), Pop Tarts, cakes and breads of all kinds, cabbages, bottles of orange knockoff brand pop, roughly a million small cucumbers, and probably a couple other things I forgot.  
The truck was on time, which was nice.  I was the first volunteer there, so that gave me some time to find the organizers and learn a bit.  The operation isn’t too complicated.  People arrive long beforehand and sign up to receive numbers, which determine their place in line.  Meanwhile, tables are set up in a large, rough rectangle missing the front side so the truck could get in.  The volunteers arrive before the truck, to be ready.
When the truck arrives, volunteers count what was in there to figure out how much of everything they could give per person.  They also move the tables in towards the truck and get the food laid out.  When everything is ready, they’re given stations: hand out this food, or unload this box, or something similar.  When all is ready, a quick prayer is said.  Then the line begins, with one person calling out numbers and getting people in the right order.  Everyone files through slowly, with the volunteers handing out food and ensuring everyone gets the designated amount if they want it.  
This goes on steadily until the line is finished, but an organizer may run around the truck, taking inventory on quantities of food and reassigning how much food can be given to each person, if necessary.  When the whole line is done, a second round of numbers is handed out to anyone who wants a chance at the leftovers.  Ideally there aren’t many leftovers, but no count is perfect and not everyone is honest in the line.  Some people will try to get extra by having their kid or friend act like he has a number too.  That’s people sometimes…  
In the end, whatever isn’t taken by the people in the second round is up for grabs for the volunteers, or it gets thrown away.  The truck drives away, the tables are wiped down and put away, and all the volunteers go home.  
This drive was… a little haphazard.  The truck was on time, and apparently it usually isn’t.  So the volunteers weren’t there, except for me and the organizers.  The frozen chopped sauteed onions got counted at least four times.  I wished I had a clipboard and a pen… I could have saved time and stress.  I guess it isn’t usually this bad.  In any case, I made myself useful and counted things, laid things out, cleaned tables, scurried around after the organizer trying to figure out what I was doing, lifted pallets that were way too heavy for me, trucked many armfuls of bread and sweetbread to tables, and handed out pineapples.  
Trying to smile genuinely at people you don’t know is hard.  Especially when some of them are clearly embarrassed to be receiving charity, and some don’t care you exist so long as the food gets in their containers, some of them don’t speak English, and you don’t really know what to say other than “Good morning!” “Hi,”  “(Would you like a) Pineapple?” and respond with “You’re welcome.”  
After all the hubbub had died down and the last people had filed through, all that was left were bags of frozen chopped sauteed onions.  I snagged two on the enthusiastic urging of the organizers.  I’ve managed to foist one off on my grandmother, who I saw later today, but I don’t know what I’m supposed to do with the other one.  French onion soup?  Foist it onto another friend, maybe?  
I’ll probably go back and do the food truck thing again, but not next time.  When next time occurs, I’ll be in CT for Chris’ older brother’s wedding, and I’ll be wearing a dress (ugh).  It’ll be four weeks before I can try it again.  Maybe the volunteers will be there early and the truck will be on time.  Maybe we won’t have a near-record number of people, too.  

Taking Stock of Things (7/30/14)

Posted on by Realistic Autistic

Hi, I’m Sarah: Aspie, artist, advocate, and perhaps most of all, aspirant. I aspire to improve myself, my situation, and (if I can) the small piece of the world I can touch. I’m a fairly self-aware person for a person on the autism spectrum, and it’s my goal in life to understand people and help people understand.

It seems like a lot of people don’t understand autism, and that leads to confusion, dismay, and frustration on both sides.  This blog is my answer to that disharmony: a chance to share perspective and ideas with people on and off the spectrum.

Some quick facts:

– 25 years old, female
– graduated college with a B.A. in psychology
– lives alone in a tiny studio apartment and drives self around in a 15 year old minivan
– diagnosed ~3 years ago in college: autism, dysthymia (low grade long lasting depression), generalized anxiety disorder, and supremely terribly detail vision*
– currently working 6 part time jobs of various flavors to pay rent and other expenses

– volunteers in 4 other places because people need help
– vegetarian (with some exceptions, yay Certified Humane and others like it)

* cognitive disorder, not otherwise specified.  I scored in the lowest 5% of people in noticing and reacting to visual stimuli and detail.