Inkwell: Authors and Artists

    

From my limited experience I would agree that autistic people can be v. high
on empathy.  What I haven't seen studied is the baseline level of empathy
among the rest of us.  It seems to me that what is missing is empathy from
us towards autistics.
  

    
Indeed.
  

    
Home. There must be someone in a home, with whom you feel at home,
with whom you are familiar. What I meant was that you (autistic) don't
feel at home in this world. 1959: I was in London with a girl, in a
park, I could see a last floor in the houses around the park,
illuminated. There were people there, I imagined a warm atmosphere of
loving people (matter of fact it might have been a human Hell), I told
the girl "I would like to be there", "Nice thought" she replied. She
would have liked to marry and live with me in that flat. _This_ was
entirely out of my reach. But I would like to live in a homish home,
not just within walls.
Empathy: I think here there is too much reliance on diagnostic
definitions of autism. Lack of empathy may have many reasons. First,
autistic people are, if not always, often centered on themselves. They
are people who during all their life navigate on a raft  on a
tempestuous sea. Is it legitimate to ask them to imagine that on the
other invisible  side of the wave there might be someone needy of
rescue? Others’ needs require, to be understood, psychological insight.
And we don’t have much of it.  Theory of mind, they call it.
Something more on old age (which I happen to experience). Old age 
means increasing dependence on others, be it a doctor, a nurse, a carer
or an unwilling relative, This means an increasing threat of intrusion
in your bubble or shell. You hermit status  (you can live only as an
hermit) is menaced and eroded step by step. The English NAS has
launched a campaign (titled “I exist!”) to take account of this
problem. Walking around with my dog I meet many old ladies who would
like to have a dog as a companion, and sometimes burst into tears for
the one they have lost. They are alone. Why?  
About some writers who have described the condition. Well, Kafka, read
“The Burrow” and practically every other thing he has written.
Melville (Bartelby).  Many others of course but it would be another
discussion.
  

    
Beautiful, as usual.

I was wondering if Bartleby would seem autistic to someone on the
spectrum.

One thing... I wish I could say that, as an NT, I feel at home in the 
world.  When I was young, I attributed by lack of feeling that way to the 
fact that I'm gay.  The world was clearly built for others -- a truth that 
screamed at me from every magazine ad, every romantic movie, every love 
song on the radio.  But, well, now -- things have eased a bit (at least in 
San Francisco, my home for 30 years), I'm happily married... and as I get 
older, I still feel in a kind of exile as the world I knew, the people and 
places, disappear, leaving... what?  These Tea Party idiots?

Anyway, I am NOT equating autistic homelessness, which <abloner> describes 
so sharply, with NT homelessness.  But a certain amount of homelessness 
seems to be built into the human condition, as Buddha and many 
philosophers and poets have noted.  I would caution people on the spectrum 
not to imagine that most NTs feel at home either, though the world is 
indeed built for them.
  

    
I should have more properly added that I have always felt at home in
living and not living nature. Sea, mountains and woods. 
  

    

A friend with Aspie-ness once told a dear girlfriend that "she smelled like
Chicago".  She was taken aback, of course, as it didn't seem to be a
compliment.  yet to my friend it was because it reminded him of all the
good, warm feelings he had about time he had spent in Chicago.
  

    
how does one differentiate between someone on the aspie scale, someone who
is very introverted, and someone who is HSP (highly sensitive person i.e.
just generally neurologically overamped/finely tuned)?

and what are we defining as empathy? or lack of it?
  

    
Wickett: “I would agree that autistic people can be v. high on
empathy.  What I haven't seen studied is the baseline level of empathy
among the rest of us.  It seems to me that what is missing is empathy
from us towards autistics.”
Wickett, the more I accept myself, the more I see that is true. I am
now constantly calling out NTs on the way they judge other people.
Aspies do it too, gossip, bullying that is all built into the human
genome, but NTs do it because someone is weird, different or awkward.
More acceptance is what is needed. When people mock others, they are
merely asserting their distance from that sort of person. “I’m nothing
like you, I’m cool.” 

Mary: "Mainstream them?" Who is them? I am them, and I say to you, I
wish everyone to be more uniquely themselves, not the other way around.
I’ll keep swimming on the outer banks, thank you.

Steve: every population who is marginalized feels this way. Little
black girls who only had white dolls to play with until fairly
recently. Homosexuals who had no public figures to look up to. I have
just created another comedy video (my first one is doing great) where I
say “I have Aspergers”. I’d like to be successful as a jazz snger and
comedian just so I can mainstream female AS and AS in general. Dan
Aykroyd has said he’s on the spectrum, but his performance days are far
behind him it seems. But I have met shiny happy NTs who do  feel the
world was made for them. They’ve always had money, they had good
parents, high school was fun. They are alien beings to me. 

Abloner: “Old age means increasing dependence on others, be it a
doctor, a nurse, a carer or an unwilling relative, This means an
increasing threat of intrusion in your bubble or shell.”
Yes, it does and it is crucial for people with AS to increase their
earnings and savings to avoid such a complete erosion of control over
their own lives. I have no savings, and many aspies I meet have none.
Many have no jobs and live at home with mom and dad. My heart goes out
to aspies in prison, who are homeless and who are forced to live in
group homes. I was in a homeless shelter once and it was absolutely
horrible. It was okay at first but then of course the bullying started.
Lucky for me when I have a meltdown it’s pretty scary and they left me
alone after that, but that same trait could also land me in jail.
I tell women with AS particularly to build their earnings and savings
as we tend to have even more sensory issues than men with AS and need
quiet environments. That observations is based on my lectures and
interviews. I always ask “anyone here on the spectrum who doesn’t have
sensory issues?” and it is always one or two young men who raise their
hands, never females.

Loris: "how does one differentiate between someone on the aspie scale,
someone who is very introverted, and someone who is HSP...?"
Ask thirteen different people and you’ll get thirteen different
answers. You have to ask them a series of questions. People write to me
or come up to me all the time and say that they think they have AS.
The biggest, most obvious deal breaker? I ask them if they are social.
If they say yes, then they are not on the spectrum. By social I mean
comfortable in social situations, actually enjoy them. But the
diagnostic process is long and complicated. Many suspect they are,
because as I stated earlier we all experience traits. But true aspies
KNOW they are. It’s kind of like sexuality. Just because I had a
bisexual experience a few times does not mean I am gay, but I do have
traits. I embrace and accept that, and it enables me to empathize and
not judge gays. I hope that does not offend anyone. 
  

    
not trying to be tiresome, but by social do you mean 'enjoys the company of
others?' those of us who are deeply introverted tend to -hate- groups ---
but like the company of an intimate or two; enjoy some social situations but
also need downtime, quiet, and solitude; may not be hail-fellow-well-met but
do have people in their lives their cherish. is this 'social' by your terms?
  

    
Of course there are many relations between the availability of
resources, and loneliness, be it caused by  autism, or life history, or
family structure. In fact they are very intricate and difficult to
analyze. Same is true of cultural background (literacy in a pregnant 
meaning). Literacy is for me a huge resource available. And even here I
have the continuous temptation of quoting books and movies which
helped me to interpret my “burrow situation”. After all we are
sometimes called “little professors”, and we are brought to lecture
people about this and that. Literacy _is_ a privilege even if you
condemn inequality and feel shame for your (normally hereditary) access
to culture _and_ resources. These two things are correlated in
complicate ways, but whatever are these relations, it’s difficult that
the literate suffers in the same way as the illiterate.
  

    
Being alone, or being social.  And some odd hybrids.

I'm thinking about the public side, such as performance, or online
interactions. There are many (neurotypical?) performers who feel that
being onstage or in front of the camera is easy but going to a dinner
party is hard. There are people who are social on The WELL but not so
much face to face.  I wonder how Asperger's factors into those less
traditional kinds of social interaction.

I'd love to know more about how the comedy performances fit into that
context, Rudy.  Is being in front of an audience social?.
  

    
A little science public service announcement -- an interesting study has 
come out this week that lends support to the "intense world" theory of 
autism:

http://bit.ly/aSoxqw

Basically, scientists used to think that autistic brains didn't transmit 
enough stimulus in (I guess they never asked autistics). Now they're 
thinking that autistic brains -- particularly the prefrontal cortex -- are 
hyperstimulated, but don't communicate well with the rest of the brain.
  

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

Great conversation. Just hearing about the book. Is synesthesia to be
found among those who by diagnosis or peer evaluation find themselves
in this Asperger category? Any mention of talking bubbles, feeling
colors, numbers with colors, sounds with colors? 
  

    
Thanks, Steve!  The first part of that article is fantastic, although
the last bit rubbed me the wrong way.  It even features the only gene
for which I have a pet name ("Can't Sleep Either"), which is to say it
connects genetic studies to neurological studies in a new way.
  

    
I highly recommend this, from Silberman's new blog

"25 Things I Know as an Autistic Person" by Corina Becker

It's concise and perfect. It's also what I feel every day when I have
to say good morning when crossing the hall to gain the streets.  
  

    

Will read both momentarily.

Meanwhile, I wanted to comment about, "But I have met shiny happy NTs who 
do feel the world was made for them. They?ve always had money, they had 
good parents, high school was fun. They are alien beings to me."

I think this can broadly be applied to almost any _out_ group, not only 
autistics.  Many NT people without a _homish home_, as abloner put it, can 
imagine one, believe it is possible, work towards it, and achieve it.  
The inability or difficulty to move beyond imagining and wanting--that it 
is what wrenches my heart about autistics and also seems fundamental.
  

    
Abloner: “autistic people are, if not always, often centered on
themselves. They are people who during all their life navigate on a
raft on a tempestuous sea.”

Love the imagery and that is exactly so.

Loris: “by social do you mean 'enjoys the company of others?' those of
us who are deeply introverted tend to -hate- groups --- but like the
company of an intimate or two” ? 
Yes. Most of us can handle social gatherings if there is a purpose,
i.e. a play or a band or a game; something we can focus on. But just a
bunch of people milling about a room talking about nothing in
particular makes us nervous. If we like our families, then we prefer
family parties to peer parties. This has been noted by me, and I think
Tony Attwood and others.

Gail: “there are many (neurotypical?) performers who feel that
being onstage or in front of the camera is easy but going to a dinner
party is hard…I'd love to know more about how the comedy performances
fit into that context, Rudy.  Is being in front of an audience social?”

Not exactly Gail. Generally If I’m in control I’m fine. But I had a
club owner come up and shuffle my lyric papers around and it really
upset me. He let me know it was his world and he was in control and I
sang badly the whole night and wanted to hide and then I went home and
didn’t sleep. I’m much more comfortable singing jazz in front of an
audience than doing comedy. Uses a different part of my brain. Aspies
need to feel like we are in control of our worlds. We are
supersensitive too. I uploaded a new comedy bit on my FB page and on
Youtube last night, and got one mindless comment. I was literally up
all night. When I finally got up today, it was all positive stuff. 
As for the NT/dinner party comment, as I said earlier, many NTs
experience autistic traits which can make them downplay the syndrome.
That is only a small part of AS.

Awesome article Steve. I’ll read it when I don’t have a migraine
though. Today’s a big day for me. My first novel is finished and going
to the printers and I always get an ‘end of book migraine’ because I
proof it at the end over and over again very quickly. I swear it has
nothing to do with all the champagne I drank in celebration.

Off-well reader Sarah – Synesthesia is not something I talk about in
Aspergirls though it is mentioned. But I would like to in future. It
has been mentioned by many I’ve spoken with along with another
phenomenon I can’t recall the name of...perhaps one of you can. Where
you ‘feel’ what you see. I feel my cheek being touched when I draw a
face, or feel pain when I see an accident on film, or hear of one. 

Wickett , I agree with you. That seeming glass wall around us can lead
to depression and despair and giving up on finding a home-ish home. I
am trying in my own small way to be a sort of cultural ambassador
between the autistic and non-autistic population in my books. To create
some compassion and understanding among NTs and to give Aspies some
tools they can use to live a life more fully expressed. That sounds
arrogant. I apologize but that has been my intent with all my books.
  

    
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?
  

    
Thanks, <abloner>. For anyone interested, here's the link to the piece he 
mentioned:

25 Things I Know as an Autistic Person

<http://blogs.plos.org/neurotribes/2010/10/31/corina-becker-communication-shutd
own-for-autism-awareness-no-thanks/>
  

    

> To create
> some compassion and understanding among NTs and to give Aspies some
> tools they can use to live a life more fully expressed. That sounds
> arrogant. I apologize but that has been my intent with all my books.

Personally I find that is a noble intent.
  

    

Thanks to you both!
  

    
Rudy, thank you for having the chutzpah necessary to chase such a
worthy goal.
  

    
I didn't realize synesthesia was associated with AS as well. Mine
tends to be shapes and music.
  

    
I have not seen yet a thorough exposition of the intense theory of
autism, but for now it seems to me that it can illuminate many
problems.
I have a Filipino woman who comes to my flat 5 days  a week 2-3 hours
a day, to keep things in order. Moreover a young man comes here now and
then to help me with the electronic apparatuses (laptop, DVD, etc.).
Today for some 10 minutes they were both here.  The woman is very sweet
and affectionate and caring. Sometimes I perceive her as being _too_ 
caring. I feel overwhelmed and flooded by her gentleness. The young man
is  a nice person. Is not intrusive but puts me many questions  about
literature philosophy and other, which I try to answer at the best of
my knowledge (which is not a great thing, but, if anything for reasons
of age, is  more than he knows).
Today I felt particularly overwhelmed. In these cases I have two
options to put in order my mental house after the exposure. One is to
do solitaries, this engages my left hemisphere enough to let the right
hemisphere settle down. The other option is to take the dog for a walk.
I used both today and now, coming home and reading the Slavavitz piece
printed, I found this intense theory of autism. It fits perfectly and
seems to me an extraordinarily useful explanation of my (perhaps our)
difficulties, not those of today, but those of all my life. It’s  like
being deafened by an excess of noise (mental noise). You are not
insensitive, but oversensitive, and you fly all situations of what, for
you, is an overload of   emotional  noise that you are unable to
process properly.
  

    
Rudy, I'm curious about your perspective on how the online autism world 
has become so polarized.  There's the "curebie" vs. "neurodiversity" 
divide;  there's the Autism Speaks vs. Ari Ne'eman divide;  there's the 
pro-vaccine vs. anti-vaccine divide;  parent-driven advocacy vs. 
self-advocacy; celebrities like Jenny McCarthy vs. non-celebrities;  and 
so on.

The easy response would be to say, "The whole country is polarized right 
now -- look at Congress, or Fox News vs. MSNBC!"  But I've been thinking 
about this a lot, and wondering if there's anything about a spectrum that 
includes everyone from people who can't speak to people who could be 
mistaken for neurotypical that provides particularly fertile ground for 
these fractious divisions.  What's your perspective, and have you found 
various factions trying to "claim" or "reject" you?