Inkwell: Authors and Artists

    
In answer to Steve:
Science will eventually pinpoint more specifically, the causes of
autism and I think it is good to know and eliminate or reduce the
causes. I understand the heartache of parents wanting to find out why
their once normal child has become unreachable. I often wonder if my
own shots and fillings (I had eleven mercury fillings by age ten)
exacerbated my Aspergers. But to eliminate autistic traits altogether,
as if that were some sort of plague is a very bad idea. As Temple says,
“eliminate my autism and you take away my genius.”

I don’t get involved in autism politics in any way. I of course
believe in neurodiversity and admire Ari for putting himself out there
as he does. Any organization that has to do with autism simply must
have aspies on its board. We are the cultural ambassadors. We know what
it’s like to be autistic and are high-functioning enough to express
it. 

But politics is a construct. If you buy into any construct, it becomes
reality. I had been raised to think America was a great country, god
was a man with a beard and you don’t eat meat on Friday. Then I moved
to Asia (Taiwan) and my whole philosophy of life was turned upside
down. It has been further eroded, deconstructed, reconstructed by every
move that I’ve ever made. More so than reading books or watching
films, I find living in other cultures absolutely consciousness
expanding. When George Bush Sr. was elected I knew I wasn’t long for
this land, and eventually left it for eight whole years, coming back
unfortunately in the middle of GW Jr.’s reign. I hate to be rude but I
am appalled at the stupidity of people that buy into the lies. Jimmy
Carter who was the best president we’ve had in my lifetime. He didn’t
lie. People said he was weak. There is nothing stronger than a person
who tells the truth at the risk of losing their own popularity. We
aspies do it all the time by compulsion, but he did it out of choice
and I really admire him. And asking Obama to hurry up and fix the mess
GW made is like giving some poor slob a shovel and saying “go clean up
ground zero.” Anyway, I don’t have TV anymore, just netflix and the
internet. The airwaves are full of lies that tell us we need
pharmaceuticals to be happy and have sex. That we need gas-guzzling
cars and empty food. We need insurance but god forbid we should ever
actually have to use it. Lies lies lies everywhere. So, I don’t follow
politics,  since it’s all about money. Whoever has the most money
behind them gets to run in an election and whoever tells the best lies
wins. I’m not saying all politicians are bad, but the system is
corrupt. I will probably not live here very much longer. I found New
Zealand, Australia even the UK to have a lot more common sense when it
comes to politics and a much more laid-back lifestyle. You can shop
barefoot in New Zealand…in the grocery store! And no one as far as I
know, has ever bought food contaminated with athlete’s foot.
Anyway, people do try to discredit me. A phony journalist (I know who
it is too, he’s been badmouthing me for years) wrote to my ex-husband
the other day, asking him what I was like “socially” when we were
married. Trying to ‘prove’ I’m NT. Some people fixate on negative
things. Some people contribute and make the world a better place and
some people are like black holes, trying to suck everyone into their
own misery. I don’t know anything about autism speaks. I do know that
Ari didn’t like me either because he perceived my first book “22
things” as casting a bad light on AS men. that made me sad initially,
but now I get emails everyday telling me that my books have helped
someone, emails from people that were reduced to tears of relief, and
these emails make me cry everyday. I am so happy that I’ve helped one
girl who’s been misunderstood. One couple that was on the edge of
throwing their love away. One boy who found the courage to go to
college.
That is what I care about. I have aspie focus. If I pay attention to
the world, I don’t get anything done. I read the NY Times online once a
week, look at BBC online. But I work 18 hours a day lately writing and
performing. I want to have made a difference before I die. I want to
get everything out of my system that is in there bursting to get out.
That’s what I care about. Self-centered? Absolutely, but for the
greater good.
  

    
Well chosen and well said.
  

    
oh i do want to add that I do pay enough attention to vote on major
issues, but even the voting system in this country is confusing.
elderly, dyslexics, claustrophobics, it's pretty freaky going into that
booth and finding your chosen options even IF you've been able to weed
thru the issues.
  

    
I'd say diluting the media dosage is a good thing.  Network news has become
a cavalcade of drug ads interspersed with a few newsy soundbites and a
closing dose of media self congratulation.

I'm advised to consider Tasmania and the coast of Portugal for my own exile,
but I have sort of put the two together and come to Bolinas, closer to our
kids than these interesting alternatives.

I do wonder what the crows are planning, how soon the ocean will rise and
flood the road in and out, and how the community will take this all in, make
art from it and share the crops.  There's already a Free Box and a Book
Exchange, the Whitecaps (retired people's club) and the Community Center.

I think community is even more important as we age (I'm 63) and I'm getting
used to having older friends who can show me the way to enjoy my days as my
longtime software developer schtick becomes my former schtick.

When I was getting straight B's in school for looking out the window all day
they didn't have a name for my type.  Just my luck Sputnik made it into
orbit and we were encouraged to study math, then computer software.  CICS
been very good to me.  I'm pretty good at translating meta concepts into
practical contraptions.  I wonder what serendipitous event brought my DNA
into all this opportunity.  Like my dad, I'd like to delay as best I can the
onset of dementia.

Your ability to understand and express aspie life is of course for the
greater good.  This has been one of the best discussions on inkwell.vue,
scored by the number of times I've been checking for updates.

Thanks for every bit of it.
  

    
oh i do want to add that I do pay enough attention to vote on major
issues, but even the voting system in this country is confusing.
elderly, dyslexics, claustrophobics, it's pretty freaky going into that
booth and finding your chosen options even IF you've been able to weed
thru the issues.
  

    
Absentee voting has saved my sense of good citizenship.
  

    
Very well said, Rudy.

The only cautionary footnote I would add is this:

>  why
 their once normal child has become unreachable.


I think a tremendous amount of anguish and confusion has been inflicted on 
the parents of autistic kids by the fact that certain forms of autism do 
not become apparent until a kid is two or three years old, and then can 
manifest as a sudden, dramatic regression of abilities.  This makes it 
easy to convince parents that their "once normal child" has abruptly 
become autistic.  It's likely that in most cases, these kids were never 
neurotypical, but that their autism was not apparent. Just saying.
  

    <scribbled by abloner Sun 7 Nov 10 00:43>
  

    
From off-WELL reader, saraschierhanson@gmail.com:

Rudy: Thank you for pursuing this role as an ambassador.Having a very
un-NT daughter of thirteen who totally understood Temple Grandin's
thinking in pictures yet who is almost off the charts of the Myer's
Briggs test in the extrovert category, I appreciate your revealing the
world that AS women experience. I have no doubt that my daughter will
need all the relationship advice available because of her openness
towards others. I believe what you have written will be helpful to
many.
I applaud your decision appropo the news to be informed, but not
overwhelmed. We have quite likely overwhelmed and overstimulated all
neuro-tpes which may be the underlying cause of the shrillness and
harshness of most public discourse these days.
Here is my question: as ambassador to the NTs could you describe what
would be the ideal setting for spiritual expression if one was to
worship with a group? This is not meant to be religion specific, but
rather is there a "safer" homier" set of activities that allow an AS
person to worship and not to be simply exhausted? 
Sincerely,
Sara M. Schier-Hanson
  

    
thank you for your kind words Sarah. As to your question:
I believe some aspies are comfortable with the rituals, rules and
routines of religion, whether it is the ten commandments or the sutras.
I am not. I am really uncomfortable with a lot of religious
terminology: "worship," "praise God," "the Lord," these things all make
me squirm and sound silly to me. I prefer to do things my own way and
in my own home. I see no need to get together with a bunch of people
and chant. I cannot speak for anyone else. I just happen to think the
ideal setting for spirituality is everywhere and is woven into the
fabric of my daily existence. but I think buddhist meditation is quite
alluring to many of us and I have studied it in depth in the past. 
  

    
I was raised Catholic and then when I went to college I stopped going
to church. When I lived in San Francisco, I started going to the Zen
Center and really liked their services, especially the chanting. They
said Americans often had trouble with the bowing, and when I said I was
fine with it, they found out I was Catholic and said, ah, that's why.

When I filed for divorce from my daughter's dad, and was in a state
where I literally knew no one who wasn't related to him, I decided it
was time to join a church again, because I needed community and church
was the safest way to find it. I wasn't invested in becoming Catholic
again, but it was the most conveniently scheduled service, and it was
comforting to be in a place where I still knew all the words and knew
when to stand up and sit down. 

Since then, I go to church semi-regularly. I go when I have my
daughter, and I sometimes go when I don't. I like singing. I like
sermons that put the readings into a historical context. I also attend
a number of the ritualistic services of the Catholic Church -- Midnight
Mass, Easter Vigil, stations of the cross, etc. -- because I like
them.  Do I agree with everything about the Mass? No. Do I agree with
all the Catholic Church doctrine? Hell no. But I take from it what is
useful, and I leave behind what I disagree with.
  

    
From off-WELL reader, saraschierhanson@gmail.com:

Rudy: Thank you for your responses and openness.Being "out there"
through music and writing has its cost as you have found critics 
among the well-wishers. Thank you for bearing the cost . As an
introvert I know the feeling of being "skinless" after too much people
time as I can also" spin" many hours into the night  replaying negative
comments heard or overheard.
As an interloper to the Well community (a friend has his e-mail here),
thank you members for good conversation as it will assist me to
continue striving to parent and nurture my un-NT daughter who has met
the bullies, but never got the punches.Rudy ,having shared yourself and
opened up the AS perspective, when I see you swimming along the
outerbanks as you put it I can wave now and will endeavor to prevent
those who might want to see what a rock or a punch launched towards any
AS individual would do.Your courage encourages me.Keep singing keep
trying to bring humor into people's hearts-both humanize us all
I will just listen now. Thanks all.
Sara
  

    
Restating an earlier question that go lost in the shuffle:

Rudy, a couple of the Deborah Tannen books, especially You Just Don't
Understand - Women and Men in Conversation, really helped me a lot in
developing a functional conversation style.  John Gray also to a
lesser extent.  Do you have experience with or an opinion on these
sorts of devices and how they translate specifically for use in the
Asperger's world?
  

    
HI Peter - I read Gray back in the early 90's and I liked it but it
has been a while. I am unfamiliar with Deborah Tannen's books. I have
recently read a book called "non-violent communication" by marshall
rosenberg. I don't love it but it does contain some useful techniques
that I'm now applying in my couples sessions. 
  

    
Rudy:

What do you think is the significance of the emerging autism self-advocacy
movement -- i.e., autistic people defining themselves, organizing for
access to services and civil rights, and even celebrating their own
autistic minds?
  

    
As I see ASD.
Empathy (lack of). I think that an answer may be found in the intense
theory of autism (Henry Markram). What appears as a lack of empathy
might be an excess of feelings due the inflow of inputs too strong to
be processed by the brain.
Repetitive behavior, ritualism: this might be to a great insecurity
about the condition of the autistic bubble. The autistic knows that
his/her bubble-home  is a fragile construction, and through ritual and
repetition obtains reassurance about its solidity and persistence,
After all ritual, in religious experience is a methodology of
conservation. The religious “home” is largely an intellectual
construction, a fruit of fantasy, imagination, myth creation and needs
prayer and beads for to stay alive.  The autistic home is even more
fragile, due its idiosyncratic existence.
Interactive failure: like the lack of empathy, and in parallel way,
this might be due the overload of signs (coming from others) to be
interpreted. “Was what he/she said hostile or friendly? What was meant
really. 
Literalism. I have a personal experience I may cite. Many times in my
life some person who perceived I would have liked to talk about some of
my problems has addressed me with “shall we have a coffee”, to which I
always replied “no”, because I don’t like coffee off meals: I never
understood the proposal of “coffee” was a proposal of chat somewhere in
a quiet place and a disposition to listen to you.  To this I must
frankly add that I have some fear about chats.
I think we are a jumble of  wishes, needs, feelings and that in
communication with others we don’t ’know what to put on the table in
good measure because of the intensity and anguish that accompany them
(here again the Markram might be of  help.

As for the specific problem of factionalism among the ASD people
(Steve) I think there are  financial speculative  interests here based
on the feelings of all the people, who have some child or kin in the
spectrum who will never abandon a hope in a cure, their plight being
terrible. 
  

    
I'm thinking of the way the Deaf community in some areas is resisting
attempts to mainstream them, and instead they want to hang out with
other Deaf people. To what degree are Aspergers/autistics like that? 
  

    
“What do you think is the significance of the emerging autism
self-advocacy movement”

Steve/ Sharon: Laws will be changed/enacted, more people will come out
of the autism closet providing role models for the rest. There have
already been a number of fictional characters in the media. I think the
earliest aspies in film and television were more to be pitied or made
fun of; lately we’ve been seeing real multi-dimensional people.
It’s a part of any civil rights movement that we band together and
start telling people about what’s right with us, instead of what’s
wrong. I don’t know any deaf people, but surely other senses are
heightened, and that is the same for the autistic brain. Deficits and
gifts. One unique thing about this movement is that by its very nature,
we are loners, so for us to come together and meet as groups is really
quite an achievement. As much as I love being in a room full of
aspies, sometimes I don’t want to be in a room full of anything but my
books, art, music and dogs.

Abloner, I also subscribe to the Markram “Intense World” theory that
the world is an onslaught to the hypersensitivity of the autistic
person. We don’t process the same way as others. We need time to
decompress and recover from a simple shopping trip or a workday, much
more so than neurotypicals generally do.
I related to everything you said and especially the coffee anecdote. I
only drink it in the morning, and can’t resist saying “I don’t drink
coffee in the afternoons but I can have tea” if invited. I have a hard
time not telling the truth about something. Even if an Aspie has a high
IQ, we have literal minds and sometimes can be thick as planks. We
make strange associations. My favorite childhood misinterpretation was
thinking that the words to the prayer hail mary were “blessed is the
fruit of the loom, Jesus” when I was a kid, because that was the
closest thing I could attach it to. I didn’t know what a womb was and I
figured if Santa Claus and the Easter bunny had something to do with
God, why couldn’t four guys dressed as fruit? I never figured out what
fruit had to do with underwear though. I also thought Bea Arthur and
Rod Stewart were the same person and couldn’t shake that belief. this
is a 'normal' kid thing to some degree but it's persistent and vivid
with us. 
I’m quite literal at times. It’s amusing now that I know why, and that
I’m not stupid. It is frequently a great source of humor for me and my
fella. Except of course, when he says he’s going to be home in five
minutes and that turns out to be 15. It’s still really hard for me to
accept that something like that isn’t done on purpose to antagonize and
annoy. While ritual and routine keep us safe on an otherwise unsafe,
unpredictable planet, the literal mind is a cognitive quirk that seems
to serve no useful purpose, except perhaps for us to keep everybody
else on schedule and on target. Having my rituals and routines
interrupted against my will makes me break into a cold sweat if not
have a meltdown and so does when someone says something they don’t
really mean, unless I accept and understand that it’s humorous or an
idiom. 


I have only one more day of questions everyone. I've enjoyed our talk.
Please do ask if you have held anything back. Cheers.
  

    
>We need time to
decompress and recover from a simple shopping trip

And excellent example.  Some days I can make a trip to the supermarket
no big deal, in and out; other days the whole place is just so intense
I want to run screaming out of there and can barely stand to get
through the bare minimum from my shopping list.  But someplace like a
mall is never easy.  I've pretty much always hated shopping, except
bookstores, which are usually a lot more soothing than the average
music blasting clothing store.  Department stores are the worst,
especially the main level fashion designer's clothes and perfume level.
 Almost painfull to just pass through at times.  If I do make it in to
the mall, I come home and put the bags down and usually have to do
something else to decompress for a bit before I can even put the stuff
away.  

>Having my rituals and routines
interrupted against my will makes me break into a cold sweat if not
have a meltdown

I did spend some time as a student in a clinic where very young
children were being observed for possible diagnosis of autism, and in
general, the kids who ended up with the diagnosis had such clear
stereotypies that I could not identify with them.  But looking at
myself from childhood to now through this lens, I can see so many
things that really fit to a 'T'.  Even today, an empty cookie jar is
very unsettling to me--not because I have an eating disorder, but
because it's one of those things that says home, comfort, routine.  I
don't have to eat a cookie every day--although most days I do--but if I
run out of time to make some before the last batch is gone, I do find
it harder to relax no matter what I am doing until the problem is
fixed.  That low-grade anxiety carries over to work, play, and is not
just present when I'm in the kitchen and see the empty jar.  

It's either an aspect of aspergers, or all those years of Sesame
Street (another childhood ritual that could never be disturbed) turned
me into Cookie Monster.  
  

    
debunix, I wonder what you and others think about the overlap with, or
some similarities with sensory integration disorders. My daughter has
one, and I suspect that's what was "the matter with" me as a child- I
just can't hack sensory overload, and neither can she. Thoughts?
  

    
 Rudy: “we are loners, so for us to come together and meet as groups
is really quite an achievement.” Very true. I have often tried to
imagine a kind of shelter where Aspies could meet freely (come and quit
at their whim), knowing what to expect from others. Not much, I think.
I know some Aspie, and their naked coldness irks me as hell. After all
I expect from others warmth and affection though I am scarce on these
commodities. And there are vicious circles forming, when you
reciprocate with irritation and freeze yourself.
  

    
When this discussion is over I hope there will be chances to discuss
further about mind disabilities on The Well.
  

    
This is one of my personal best experiences in an Inkwell interview. 
Thanks Steve and especially thank you to Rudy!  It would be great if
you stuck around and checked out the rest of the Well.  I think you
would find a surprising number of like minded individuals who did not
participate directly in this conversation.  In any case, thank you,
thank you, thank you!
  

    
“I wonder what you and others think about the overlap with, or
some similarities with sensory integration disorders.”

Sensory processing differences are now part of the criteria for autism
spectrum disorders. Virtually everyone on the spectrum has sensory
issues. But it’s the old square/rectangle thing. You can have sensory
processing difficulties (I hesitate to call it a disorder) without
being on the spectrum. Sensory issues are not a problem with the eyes,
the nose, the ears etc. but with how the information travels through,
and is perceived by, the brain. My own issues are metal on metal
sounds, touching certain textures (can’t hold hands while walking with
bf unless wearing gloves), fluorescent lights and any flickering light
(sunlight through the trees this time of year is tough). It hurts my
brain. I have lots more.

Well it’s my last morning here on inkwell and I am going to leave you
with a little shameless self-promotion. 
I have a regular blog on Psychology Today called Aspergirls. 
If you would like to know more about my Asperger work and books,
(including my new YA Fantasy novel which doesn’t have its own site yet)
my site for that is wwww.help4aspergers.com 
My music and comedy site is RudySimoneComedyJazz.com
My Youtube name is Rudytutti and I have videos of lectures posted as
well as comedy reels from my alter-ego. I probably should use a
different name or have a separate channel for that, but I already
manage 7 websites.
I’m on Facebook and I’ve got three pages there.
I’m one of the subjects of an upcoming documentary on Aspergers which
I think might be called 20 questions, but I’m not sure. 
I’m going to be holding a unique event here in town where I play
music, do comedy (not for kids) and hold a small Q&A on AS afterward.
I’m hoping to rent the Exit Theater for this. Please do email me from
my AS site or FB if you are interested in attending, sponsoring, or if
you can recommend a venue. It will be filmed, and used in the
documentary.
Lastly, I’m singing in town tonight at a small hotel bar which is
posted on my music/comedy site. Stop by and have a martini.

Thank you Steve for hosting, and Julie for having me. It’s been great.
Thank you Peter, abloner and everyone else who asked such great
questions or made some poignant comments. I have been enriched and
encouraged by you. 

Best to you all. Rudy
  

    

Thank you so much, Rudy, and to everyone who participated here.  You've
all been so generous with your time and experience.  It's been a wonderful
conversation.