AutieCultureAndReentryIntoNormalSociety
Introduction/Definition/etc
What was the the autie culture like
and how am I adjusting?
20100708 11.42 am Jerry
Body
Going to Autreat, a Conference For and By Autistics,
was a culture shock of sorts.
I wasn't sure I'd be welcomed despite spending
years around and probably having a lot of the
characteristics/ symptoms of Aspie, though not
formally diagnosed...
The welcoming committee was a little harsh,
at least for me. A slew of paperwork,
including a lot of personal information
to submit to people I've never met,
the emergency form, diagnosis, medicines,
allergies,who to contact
(ICE In Case of Emergency) on my cell,
and other ID and medical issues,
almost like a kid going to camp
(and I wrote myself up in the kid registration anyway,
as even at my advanced years, I'm still
childlike in so many way, especially with
puppy dogs, and around younger people,
almost a clown... planning on showing/
sharing the OLPC XO with kids, adults,
techies, etc), but I left my parents
at home, and ventured out as someone
trying to experience the Autistic world
first hand...
First was the privacy policy of Autreat,
can't interview people, can't photograph
people, can't write about stuff, no names,
etc. I'm almost a journalist, sometimes
when working / volunteering with the
StreetSense paper, I'd consider myself one,
but it's not paid, I'm not on assignment,
no longer associated with the paper,
just have 20+ published short articles,
and experience writing, editing and
running a drop in writers group of
homeless people over 1.5 years or so...
But it ended badly, I have a bad taste in
my mouth so to speak, about StreetSense,
and noticed the last issue doesn't even
have a Will Write For Food Writers Group
page in it and heard the vendor manager
changed (yippee), as have almost all the paid staff
since I was there...
But this verbage is about Autreat and Autistic
cultures... So I'm not a journalist, but "a Hack",
there's a difference. Some have skills,
I pound on the keyboard like a mad monkey,
as personal self directed therapy,
put it out to a world that mostly doesn't read it,..
So First up at the Con after getting to the
location and finding no food, rural values,
an imported car in the parking lot with three of four
flat tires, later discovered slashed,
and bad memories of living in rural areas
and small colleges, plus a dead bird
at the entrance (requested a proper
burial for it, seriously, but I think they
just put it in the trash bag, at best...)
:-((
College staff were mostly young females,
perky and friendly and welcoming,
if not a overly and a little perplexed
by some of our actions/ eccentricities.
For example, I wanted to check
the local bike shop to see if they had some
parts, so was it open? Given the phone
number... Called got an answering machine,
late Sunday, almost 5 pm ish,
and closed for a couple of days,
guessing doing weekend hours and
they take off Monday, maybe Tuesday too,
and never actually got there...
No answer = no business from me,
at least for now...
Food in the area, had to go out to grocery store,
Tops is the food chain, like a Safeway or Food Lion
round Warshington, afaict.
Small town America, and while I'm originally
from a much smaller town than Washington, DC
it has been decades, and I think Washington is
out of touch with the people it supposedly represents...
Signs on a Bradford, PA lawn said the town refused
20 Stimulus jobs... Wonder what the strings
were... There is a general worn out quality to
some of the towns we traveled through.
Maybe it is the harsh winters by comparison?
This one in particular had lots of bars,
and some people hanging out side
on the streets. Looked a little like
parts of Washington, DC, and the depression
era...
Food at Autreat was Vegan ONLY.
but I don't think they would have liked
the inverse, being forced to eat meat,
so wonder why they force others
to become vegan???
I got sick on the foods, they were not
what I was used to eating (NB: I usually
get sick when eating as others do and travelling),
and feeling like going to the cafeteria,
I was going to end up sick, more running to the
bathroom, was not pleasant, I didn't have
money to go elsewhere as the costs of
the Con and trip were about all I had,
and had to keep some for transportation
emergencies too...
I talked to the food service woman
upon entry and she wanted me to
complain to the conference organizers/ director,
but I pointed out that the way it
was prepared may have had things
to do with it too.
The privacy policy, then someone
an academic, getting up and saying
she was looking for people to interview,
for research late the first night, Monday?,
then early hours of the con starting at 8.30 am,
when I had to go to town, get some exercise
to deal with the social stress,
sedentary sitting in lecture,
and try finding food that would not make
me sick, was getting a little problematic
and I had started wishing I hadn't gone.
I wrote about it and posted to the local support
group, to little response. I whine a lot,
and do so much more in writing than
how I actually feel at times, as it's
like therapy for me to write and get
the experiences out, that way I know how
I feel about stuff, and actually process them.
Back in my heavy MH treatment days,
they said those that journal get better,
and with so much going on, I really
needed to keep track of stuff.
Some of the medications I was put on
affected my memory and cognition,
in addition to trying to get my mood
elevated...
Anyway, Autie culture at Autreat
uses part of the deaf culture. Instead
of loud noises like clapping, Auties
wave hands in the air. Even greeting
people is many times a wave.
There are colored badges,
Green for approach me is OK,
Yellow only if I know you already
and by email doesn't count,
Red for leave me alone...
I was Yellow most of the time,
(yeah, I've wanted to play with the
text attributes for a while, call me
a geek...)
but I don't like being photographed
so I had a scarlet letter type big black
plate around my neck that would
have made Flava Flav and other bling
adherents jealous, if not so tacky...
And turns out I was the only one.
So when the microphone went around
the room for the audience to ask
questions of the presenters,
the camera panned and it felt like
I was being targeted, a weapon pointed
at me, my rights were not being respected,
as I was expected to do for others,
maybe at first they thought I didn't
matter at all. I'm on the edge of
the spectrum, having some attributes,
but not all, and I called it "Borderline
Aspie", not to be confused with
Borderline Personality Disorder,
but it was getting a little like that too
after a while...
After arguing about stuff,
pointing out the differences
in long and rambling writings/ rants early
in the morning by email to confidential lists,
usually worse than the usual grouchy mood,
remembering Northern Exposure,
fish out of water type shows,
and I'd pretty much made myself
and everyone around me miserable,
and finally decided I'd probably just
fail out of the con. I was going for
the CEUs and certificate track,
as $362 is an awful lot of money
out of pocket, for reduced income people to pay,
I added $100 to the base $262
or so because I needed my private
room, but having people add themselves
to the three bed room suite late at
night and I was up through the night
when I hadn't met the other people...
And it was on my roommate selection
forms, I detailed that I had to know the
people, and it took days / weeks before
I could sleep around people I don't know...
(VOCALCon @ GMU this year didn't allow/
financially support residential / dorm stays
for Washington DC people,
so I didn't go, commuting is a 2 hour
each way by public paratransit,
with Washington traffic in rush hour, and
I knew ahead it wasn't going to work for me
including announcing the NOVAPEERS MEETING,
on still Constant Contact email marketing list,
they stole the name of this PBWorks/Wiki and
having a meeting about creating chapters,
and then want feedback from consumers...)
And there was another Con, which was
not very expensive, probably less than
Autreat I'd also wanted to go to for year,
but conflicts abound... Maybe next
year and alternate?
At Autreat, a sleep deprived grouchy depressive
dyslexic/ dysgraphic with food and money issues
is not someone you would want to be around,
especially if he's whining about stuff
in emails, and generally considered
to be a PITA (Pain In The Ass)
usually that is a euphemism for advocate,
but in this case just literally too.
Sitting on chairs for hours on end,
the lectures were 1.5 hours long,
and early morning too...
I'd tried getting computer extension cord
power to a sofa/ love seat size thingie
in the main presentation room, and
had to figuratively and imaginatively
push an accommodations angle to get that,
trying to reserve the sofa, two of us were needing
other chair types and some people
came and took them after all
the time getting it setup,
at first the power cord was an issue
and another blocking a side exit/
entrance (the main doors are loud,
and even the fluorescent lights were turned off,
so it was basically very dark silhouette
of the presenters, I've had issues
with fluorescent for a long time,
and need incandescents, the old style bulbs,
Compact Fluorescents are the
bane of my and apparently
many others existence...
And that's before the noise the
transformers make when out of whack...
But I rant on lights, doors, sofa,
chairs and mostly the noise, the
hordes of people late in the presentations
were not quiet at all, some just talking
with each other as the speakers rambled
on, and didn't stick to schedule....
Some starting late, and needed a time keeper,
or create policy for starting on time and ending on time,
I was late to the first one, had to learn
biking to town for food also makes me
sick as well as further poor,
as I was paying for the meal plan too...
But a couple days into it, and I was
either going to leave/ thought about it
seriously early on, can't write and
then I can't think, give me my money back
and I leave, these policies were not clear,
so exit stage right...
But stuck it out and some of it
grew on me. The food, I was down
to just fruits (canalope and honeydew
which had me running to the bathroom,
water content or diuretic) and some
likely transfat/ hydrogenated oil commercial tortillas,
when I ate the regular peanut butter,
it had a lots of transfats/ hydrogenated
oils, didn't see the label, but it was
not the natural stirring kind, so must have been,
and I was sleepy after eating,
and went to nap a few times,
this is about the same as other
Cons I've been to, but at least there,
they know me, and for VOCAL
and others stuff, I was part of the funding,
and which reminds me, seems like
everyone thinks Washington is
the money / till of the rest of the
country/ world. Washington is where you
get federal dollars and everyone
there's role is to get you the money...
I'd actually be the opposite,
I'd likely cut some funding on towns
that do certain stuff... Drinking and
driving and lose some funding.
Nasty to outsiders and I'd look
for mechanisms to see what is really
going on. Maybe that is journalistic/
muck raking but people are nasty
to me (only really the snickering of the
locals about food, and the old guy
who came up to me after biking
to an early morning food place amused,
but brave and I just cut to the chase
and asked "I'm going to get killed
on the roads?" Yep, or similar...
From what? trucks? Yep,
or similar... Any my family
was from towns like this,
so I should have expected...
Welcome to Bradford, PA and
any small town America.
Pickup trucks and 18 wheelers,
semis and you're road kill,
that is what bikers can expect...
So I got my stuff to go,
a coffee cup of ice water,
(in environmentally sound Styrofoam)
my bike water bottles still frozen solid, and
biked with coffee cup in hand
as protest... If other drivers
can do it, and yack on a cell phone
while yelling at kids in the back,
why can't I?
I ate takeout breakfast in the
back and late to lecture,
brought my in line mobility aid inside,
like any wheel chair, tried not making
too much noise chomping, crinkly
plastic is always an issue with me,
plastic bags are noisy, and opening stuff
like jam, wondering if the eggs
and bacon were going to make
vegetarians people sick...
But at that point not much of any
other options...
Later the first morning lecture,
I escaped during the 15 min break
whether they were done with lecture or not,
got my little colored dot to show I had attended
for credits, and went quickly to shower
between lecture break, 15 mins,
usually takes me an hour to get ready,
but back to lecture...
All this while talking head/ prof/ lecturing about
inclusion, fitting in, etc, and a founder
of the con...
Eventually I adjusted, made myself
fit into the square pegs they expected,
didn't really fit in, ironically during an
autism conference where most didn't
and maybe still don't fit in...
More time in bed, later in the days
and started becoming a human being again.
Met some people and hung around outside
after running to town to get serene,
a couple photos of sunset,
and some underwear and socks at Walmart,
just about the same everywhere,
Rural Virginia VOCAL Con in Harrisonburg, VA
or Autreat, same diff...), as I wasn't going
to have time to do laundry, and going
on a trip and doing laundry would usually
keep people packing less, but I had
filled a 4 person car with stuff,
bike stuff, special interest stuff to show
in an introductory Monday night,
camping stuff, tent and pad, and
sleeping bad, and stove, and STUFF...
and Dad's ashes in the front seat,
As If I was taking him back to his hometown,
as promised before he died...
Eventually, I was just "snarky"
and the disruptive overgrown,
older kid(s) in the back,
and while likely pissing off
administration, was at least
being honest with myself,
and started enjoying it
as others shared some of the
same feelings with me...
But I was sad to go,
finally finding the "immersion in autistic
culture clause" of the website
description of the Con and
that really was what it was,
immersion, like language and
cultural, and how could I have
missed that important part?
I'm Dyslexic! That's How!
And rushed, trying to get
all the stuff done to go,
but I was an Autreat Virgin,
so what do you expect...
Driving in rural areas I saw a few
dead deer on the side of the road,
missed a skunk crossing the road
one place and went on to
deal with / or actually
miss dealing with my late father
and scattering his ashes,
as that would likely
require approval, and forethought,
which was sorely, on my part,
missing on this trip...
Driving along Amish country
along the river, somewhat flatlanders
by comparison to the mountains
further north, towards Harrisburg, PA,
I passed a horse and buggie with Plain
Amish people, I was wondering
how culture shock looks the other
way, those Cars and Bikes,
industrial society versus
manual labor and low tech,
a religious belief or Autie
culture, maybe both ends
of the same spectrum?
Finally coming back to Washington,
driving down Baltimore Washington
Parkway, about dusk, saw some
fireworks, a day early, must have
been practicing, and realized
Washington, DC area is really
home, I might be from rural areas,
but I've been here a long time,
over three decades, and
I have a short term memory...
My neighbors handed me a
plate of meat, and said they
were going to make a meat
eater out of me...
8-/
And the fireworks didn't sound
like gunfire, as much this year,
but I was tired, and just went to bed
early.
Conclusion
Summary of experience or similar
Discussion
A place for feedback on the page presented
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20100708 Jerry
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Comments (1)
Desiree said
at 2:35 pm on Jul 8, 2010
Sounds like an interesting experience... Its nice that you kept your promise to your Dad... You are not the only one who reads your posts :)~ BTW, what happened with Street Sense? How long has it been since you worked with them? I did some work for them this past spring and they seemed solid... whats the deal? Feel free to email me DesireeKameka@gmail.com if you dont want to share your response here...
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