Inkwell: Authors and Artists

    <scribbled by betsys Mon 1 Nov 10 13:10>
  

    
I've always wondered, if MOST people have a certain "disability",
whether it still qualifies as a disability.  Most humans aren't very
good at playing professional basketball:  at what point does that
become a disability versus just a normal human trait?  Is it based on a
specific percentage of the population?  Less than 50% but more than
0%?

On the topic of the book:  I am still not aware of ever having met a
girl on the autism spectrum.  I'm going through some of the traits and
trying to figure out whether that is only because I wasn't tuned in to
look for it.
  

    
I have met several, having worked in tech for 10+ years now.
  

    
<aslan>, from my understanding of disability theory, something becomes
a disability when society is set up in a way that makes it harder for
people with that trait to have access to things that most people take
for granted.  
  

    
Makes sense.

In terms of having met people, I'm sure I must have (at least assuming
the premise of the book is accurate) -- I just don't know who they
are.  It has definitely not been obvious.  I have met plenty of boys
with obvious Asperger's.

The appendix in the back of the book reinforces the difficulty of
noticing girls with Asperger's versus boys -- nearly all the
Female/Male differences on pages 233-234 suggest that girls with
Asperger's look very much like anyone else: more open to talking about
feelings; obsessions less unusual; more expressive in face and gesture;
better at socializing; no stuttering; etc.

I'm sure it's a matter of degree, but given this list I'm not at all
surprised that people fail to diagnose the issue much of the time.
  

    <scribbled by betsys Sun 7 Nov 10 10:03>
  

    
Wow, such great posts everyone.  Thank you!  And thank you Rudy for your 
frank and beautiful replies.

<aslan> wrote:

> I've always wondered, if MOST people have a certain "disability",
 whether it still qualifies as a disability.

I think this is one of the things that makes study of the autism spectrum 
so profound.  Because the spectrum comprises both people who can't walk 
or talk and people who could be mistaken for neurotypical, there's no 
bright line dividing the two populations.  I think that has very 
wide-ranging implications, including accounting for SOME (not necessarily 
all) of the apparent rise in incidence in ASDs.

Rudy, I appreciate your honesty about your "peer diagnosis."  Has anyone 
ever challenged your diagnosis in an aggressive way, to discredit your 
work?  I was thinking about this this morning and wondering what I would 
do if I ever had to "prove" that I'm gay.  Obviously it's a different 
situation, but, in all the years that I've been meeting people who tell me 
they're on the spectrum, it never occurred to me to question their 
diagnostic status, unless it was someone who just took a quiz on Facebook 
and scored highly or whatever.  That's obviously not a diagnosis, though 
it can lead to one.

<slf> asked, in reference to a list of AS traits:

> isn't a lot of that stuff true for nearly anybody?


Some of them, yes, sure.  But many traits on those lists strike me as 
nearly the "opposite" of me or something -- but they do describe my 
husband.

Another question, Rudy, totally outside of the subject of Aspergirls:

As a jazz singer, who are your role models?  What jazz really inspires 
you, of any type, vocal or instrumental?
  

    
A thumbnail of my experience.

I was always a quiet kid, turned inward with my thoughts.  I can
remember being like this as early as 5 years old.  I would often sit in
the stairwell at home and bellow a variety of repetitive phrases and
sounds.  I loved the echoing and my Mom never seemed to mind.  I was
not a social animal growing up and did not catch onto "the rules" the
way my classmates did.  I started getting teased when I was about 8.  I
had no idea how to read their intent or how to defend myself so I just
turned all the more inward.  The teasing became merciless and for many
years I was "that kid" in the class who got teased WAY more than
anyone else.  I had a facility for geography and history and for
memorizing facts.  I started to rely on my knowledge and memory to pass
as a social skill, rather then developing emotional skills.  I read a
lot.

When I got to high school things got easier and harder.  I'm
physically pretty imposing so by the time I was 17 or so no one would
mess with me.  I did not do the conventional sports though, my
co-ordination was lacking and I wasn't good in team environments where
you had to communicate verbally, but I did get into running and Olympic
style rowing, sports that provided the repetitive motions that always
seemed to soothe me.  I was more accomplished in rowing than in
anything else I have ever done in my life.  

I was so inept and shy around girls that all my attempts at connection
there were fiascoes.  I didn't kiss a girl until I was 18, I didn't go
on a real one-on-one date until I was 20.  My first few attempts at
girlfriends were so challenging and awkward that by the time I was 23
or 24 all of my relationships had devolved into one night stands.  I
was incapable of real emotional connection and I knew it.

(I'd like to point out that I went to Cal for a year after HS, could
not connect to the process at all, and then bounced around JC's for the
next four years.  I learned an enormous amount but I could never focus
it into a degree.)

I had started drinking around 18 and it was all fun and games until
this same period of turning 23 or 24.  I started drinking heavily.  My
sole interactions with other people were the quiet physicality of the
one nighters or pontificating endless amounts of trivia at work or from
bar stools.  Most people found me to be irritating.  My life collapsed
over a period of years.

On October 30, 1989, I got sober.  Then the  challenges really
started.  Several aspects of my life improved but in an interesting and
not uncommon irony, I was thrown back to the social skill level I had
as a teen.  I was painfully shy and had only my ability to focus with
incredible intensity on a couple of subjects to fall back on.  It was a
halting road to improvement.

So in 1998, I'd been working as the facilities engineer for a group of
SF Bay Area health clubs for about 8 years, idling my time in a job
that did not really use my knowledge or my capacity to really command a
subject if I was truly motivated.  I found a Mercury News on the floor
of the San Jose club one day and idly glanced at the section on top. 
I was a voracious reader of newspapers and couldn't pick one up without
at least looking at the headline.  It was a story  about Asperger's. 
I had never seen the word before so my interest was piqued.  I started
to read.  I could not stop.  I stood in one position, motionless, for
who knows how long reading this article.  My mind was truly blown.  I
couldn't believe that the hodgepodge of character quirks, malformed
relations with others, learning patterns, vocal patterns, perceptions,
or lack thereof, misread social cues, intense reliance on memory and
knowledge, rocking, etc. that I had fully inventoried throughout my
life had a single name.  Asperger's Syndrome.  Even then I had strong
doubts that I was suffering from some one specific thing like this.  I
went to the bookstore the next day and bought two books on the subject.
 They described my experiences and when I took the tests they
contained I was way up in the spectrum, not even close to questionable.
 I filed this information and kept my eye on stories and resources
concerning it without getting too far into it.  I think it was some
form of anxiety that prevented me from going further.

About a year after the initial discovery I was talking to a friend who
was also an M.D.  I mentioned it to him.  His immediate question to me
wasn't to doubt my self diagnosis, it was to ask me what I would
propose to do about it.  I said I didn't know.  He said, "Peter, you
are 42 years old.  You have spent your entire life adapting to this. 
The syndrome is real, I know you well enough, but at this point
understanding is really far more powerful than direct treatment.  Learn
about it.  Find people you can talk to about it.  Knowing who you are
and knowing you are not alone are powerful forces in life."  In my
particular case it was brilliant advice.  Over time I was able to lay
to rest many negative life long convictions I had about my "weakness"
or "weirdness" that my work in sobriety had failed to alleviate.

I still struggle with interpersonal relations but I have been, by
honoring my true self and by being authentic with others, able to
develop deeply meaningful relations with others.  I got into tech not
long after that conversation and discovered my professional calling, a
lot of people who get me, and a productive life that uses the full
force of my mental skills.

Due to the astronomical leaps in self-awareness that come from living
a life in sober circles, and due to the knowledge of my foibles related
to Aspergers, like Betsy, I have worked extraordinarily hard to
assimilate into the world.  I too am amongst the best in people skills
at my job.  That alone never ceases to amaze me.  If only they knew
what was going on in my mind.  :-)

I look forward to much more interaction in this topic and learning
more about some of the important women in my life who I know are
Asperger's borderline at the very least.  I also plan on learning more
about myself and to continue the task of living comfortably with who I
am.  Rudy, thank you for your dedication this topic.  You are a
treasure.  I will be getting your other books asap.
  

    
Wow, Peter.  Thank you, thank you, thank you.
  

    <scribbled by castle Fri 29 Oct 10 19:45>
  

    
A thoughtful link on self-diagnosis, peer diagnosis, and other 
"unofficial" diagnoses:

Who can call themselves autistic?

<http://www.autistics.org/library/whoisautistic.html>
  

    
I was interested in the parts about Asperger's daughters and moms. It
may be later in the book, but is there anything about 'how to raise an
NT child as an Asperger's mom'?
  

    
Rudy, one thing I was hoping to find in the book was tips for
teachers, but perhaps I can ask you here.  What would you recommend
teachers look for, do, or understand, when it comes to the question of
girls with Asperger's who may not have been diagnosed as such?
  

    
uber-muso-- I loved your eloquent, poignant account of discovering
Aspergers. Thank you.

Steve, I do have letters from doctors verifying my Aspergers; because
of my now extensive writings about my life and appearances on the
internet and autism conferences, I didn’t have to go through the usual
channels because I am known by so many doctors. For those who don’t
know, diagnosis is based on observation and anecdotes, there is no
blood test or anything conclusive. No one on the spectrum who has met
me has ever doubted my diagnosis. It seems to me a lot of NTs have
spectrum traits that may make them downplay the syndrome (it’s not a
disease). What we are talking about when discussing spectrum people,
comes down to number of traits as well as the frequency and intensity
of their occurrence. Everyone will visit at some point, but we live
there. As for the necessity of diagnosis, or the impact of it and the
relevance of AS itself, Asperger Syndrome affects every area of life:
friendships, self esteem, education, employment, finances,
relationships, parenting, our mental and physical health. Without
diagnosis, acknowledgment and support these things all suffer. 

As a jazz singer, my role models are Billie Holiday and Ella
Fitzgerald—emotion and honesty as well as brilliant phrasing from
Billie, range and purity of tone from Ella. There are many more but
these are my main gals. The better I get at my craft, the more I love
going to hear instrumental jazz, particularly old school. Watching live
jazz is like watching several talented painters paint a canvas in the
air, right before your eyes. Then they wipe it clean and do it all over
again with each song. It’s beautiful. As for comedy, There are so many
greats, both living and deceased. Of course, Dan Aykroyd is a hero,
having come out of the Aspergers closet in an interview. Phyllis Diller
was guileless and genuinely witty. I am undoubtedly influenced by
Carol Burnett; I watched that show religiously. Lisa Lampanelli is
shocking, brilliant and one of my favorites. Lea Delaria made a big
impact on me in the nineties, because I let her get on top. Just
kidding. Seriously, she is one of the only jazz singer/comedians I know
of and she’s great at both. Speaking of tests to prove you are gay,
Steve, Lea made me hold up my nails at one of her shows to see if I was
gay or not. She decided that I swing based on my shorties.

David, that is a good question. Kids with Aspergers, and probably
girls in particular, need a friend, need mentors. Temple had Mr.
Carlock (he wasn’t “professor” in real life) as well as a strong mother
and supportive family. I know that I have very fond memories of a
couple of teachers that supported my precociousness and gave me
encouragement and special projects. I had other teachers that made fun
of me, that called me a know-it-all, and that was very hurtful. It also
fosters an atmosphere of intolerance in the classroom. AS or not, if
there is a kid who's just not fitting in, for whatever reason, you can
pretty much bet they need a friend and things to occupy their time in a
constructive way. School was so damn scary for me that I still had
nightmares about it until a couple of years ago.
  

    
Sharon I do give advice on raising NT kids. We need translators,
someone to explain to us that it is normal for girls to want to spend
money getting their hair done or that I should go out of my way to see
her in her prom dress. I got yelled at after the fact, rather than
guided before, and I have guilt and some regrets and I'm sure I've hurt
my daughter's feelings. Find a non-judgmental family member or friend
to help you in this department, to give you gentle pointers.
  

    
"I know that I have very fond memories of a couple of teachers that
supported my precociousness and gave me encouragement and special
projects. I had other teachers that made fun of me, that called me a
know-it-all, and that was very hurtful."

Word for word description of my experience!
  

    
> emotion and honesty as well as brilliant phrasing from
 Billie, range and purity of tone from Ella.

Perfect.  I also throw Betty Carter into my own mix.  I saw her a bunch
and her best performances were time-stopping.  Plus, she could write her
own tunes, like "Droppin' Things" (which I love on the record of that
title because she counts off the tune in an impossibly fast time at first,
but the band is on it!)

>  Lea Delaria made a big
 impact on me in the nineties, because I let her get on top.

If nothing else, this line made this whole interview worthwhile <grin>.

> It seems to me a lot of NTs have
 spectrum traits that may make them downplay the syndrome (it's not a
 disease)


Yes, a fascinating observation!  (For those who are not familiar with the
lingo, "NTs" are "neurotypicals" -- non-autistic people.)
  

    
Rudy, I wanted to followup on a silly question I asked earlier that
got lost in the shuffle.  What do you think of the TV series "Bones"
with the character Temperance Brennan as played by Emily Deschanel
displaying several Aspergers traits?

(Btw, I changed my pseud to my name to avoid confusion.)
  

    
Peter - I don't have cable. I refuse until they undo the damage Ronald
McReagan did by de-regulating the airwaves and now they have too many
commercials. I have netflix streamed to my TV, and I find things on the
internet. I even saw the Temple Grandin bio on a pirate site a day
after it came out. It had porn ads all around it, a fact which made her
giggle when I told her. 
I miss a lot of stuff but I can't take in too much pop culture. It
clutters my thinking and makes me lose who I really am. If a show is
timeless, I'll find it later. I'm currently watching every episode of
Fraiser online in chronological order and am getting closer to the end.
I'll need a new obsession.
  

    
I understand your position on that.  If you ever get the odd chance
you should check it out.
  

    
Temper Meltdowns and "Hurricane Rudy", as described in chapter 17, are
very familiar territory for me.  Can you describe your personal
experience with this and what tools you have in place today to cope
with it?
  

    
From off-WELL reader sunfell@comcast.net:

This quote got my attention:

"I do remember the moment I realized I was no longer attractive. It
gave me some relief, actually. — Widders"

Of all the things that I have had to deal with as a probable Aspie (I
have chosen not to get a formal diagnosis because it would be
detrimental to me at this late date), the whole 'attractiveness' thing
has given me the most grief in my life. 

As a young woman, I quickly learned that my lack of ability to 'read'
intent, take people at read face value and be 'nice' was going to be
used against me. My being 'nice' to guys was often misread as a
come-on, and I had several very harrowing situations with men because
of this. I eventually stopped dating and trusting men entirely. This
really saddened me, because I am more 'guy-like' than 'lady-like' in
the way my mind works. Happily, men who did manage to see past my
gender often became great friends. I've since learned how to 'read' men
(and people in general), and have consciously worked on not giving off
the 'wrong' signals to them. Instead of a smile, I'll raise an
eyebrow, act calmly Vulcan. I look them directly in the eye and use
silence to my advantage. I am kind to them, instead of nice. And
kindness means not putting up with crap or being a clueless, pliant
doormat. They quickly find better targets. I wish I had this particular
discernment as a young woman on my own- and if I could tell young
Aspie women anything it would be this: Learn how to read people. It's
not hard to do. Look for patterns. Listen for tones. Learn how you get
manipulated, and turn the tables. Make sure you have trusted friends
who understand your particular blind spots and pay attention to them.
Men are not the enemy, but sometimes they are not your friend, either-
no matter how nice they seem to be.

That said, I often think of myself as a third gender- not really male
or female, but an intelligent being inhabiting the default somatype of
this species (which is female- males are 'made' with testosterone at a
critical moment in early gestation.). I was never interested in many of
the things girls were 'supposed' to be interested in- didn't like a
lot of 'girly' stuff, and actively fought my mother when she tried to
'doll me up' - even cutting off curls she'd rolled into my hair or
deliberately dirtying 'nice' clothes so I could not wear them.  But I
didn't want to be a boy either- I just wanted to play with their stuff-
it was much more interesting. Babies were boring. Tape recorders were
not. I remember begging for electronic breadboards  or chemistry sets-
and getting tea sets and dollhouse furniture. I wanted a crystal radio.
I got a radio-cassette player that I had to share with my sister. I
did finally get a microscope- which was my favorite toy ever. 

My disinterest continued through my teen years- I was indifferent to
the lipstick my mom gave me at age 13, declined to have a 'sweet
sixteen' party, never was 'boy crazy', and refused date,  to go to
dances or the prom. My mother could not understand- and neither did my
peers- like many others, I went from 'cool' to outcast as soon as the
estrogen started flowing. I hoped to stave off my own menarche through
sheer force of will, but it landed a month before my 14th birthday. Mom
actually took me to a psychologist to find out what was 'wrong' with
me. The psychologist gave me tests, which revealed that there was
nothing at all wrong with me- and told my mom I was actually a
frustrated prodigy. She told my mom to let me do my own thing- and she
finally did. 

I was- and for the most part- still am- indifferent to my
attractiveness. I refuse to wear warpaint or drag (which is how I view
most female cosmetics and clothing- they feel like costumes to me),
despise most 'feminine' shoes, and keep myself neat and clean, but
otherwise un-messed with. Some of this is my sensitivity to scratchy
fabrics and stuff on my skin, some of it is because I simply cannot
fathom why someone would want to put paint on fingernails, totter
around on badly engineered footwear, or change the color of their hair.


I dress comfortably- and unisexually. If I could do so, my wardrobe
would consist of jeans or khakis, and the majority of the t-shirt
inventory of "Think Geek" "Tee Fury" and "Threadless".  My footwear
would remain loafers, Converse, or comfortable combat boots. My minimal
eye makeup would vanish, and I'd 'go albino' everywhere, not caring
that I look like something from another planet. (I have albinism- my
hair, eyebrows, and eyelashes are all white or white-gold.)

The irony of this whole attractiveness thing is that people tend to
still peg me for 10- 15 years younger than my actual age- sometimes
more. Folks still place me in my early to mid-thirties- and I just
turned fifty. This totally floors me. But I guess I still give off a
'Ma'am' vibe, because the younger men I deal with are sweet and polite,
but they are no longer trying to proposition me. That particular part
of my life is gone, and I could not be happier about it. Sure, I still
turn heads- but I am no longer giving people whiplash.
  

    
Sorry about the topic getting frozen, not sure how that happened. Alll
fine now.
  

    
ah, ok, just sent email to <digaman> inquiring.

anyway, I had just read #47 and was going to post: my sistah! except
I've never been conventionally attractive.
  

    
Peter, Re: Temper Meltdowns and "Hurricane Rudy":
I had removed myself pretty much from society by moving to a rural
community and being a self-employed writer with few social and sensory
challenges. But when I moved back to an urban environment and in with
my partner, I realized I wasn’t dealing with overstimulation very well.
There were nights where my house resembled a Greek wedding there were
so many plates being smashed. After damaging a hard wood floor and
scaring the crap out of my boyfriend, I thought hmmmm, maybe there’s a
better way to deal with anger. I do some basic things; try not to drink
too much, I do yoga a few times a week, don’t overcaffeinate, I try to
talk about issues that are bothering me with my partner as they arise
rather than letting them build up. In order to do this, I’ve had to
learn to identify my feelings which is difficult for Aspies. Ask us HOW
we’re doing and we’ll usually tell you WHAT we’re doing because that
is what is important. But with the hypersensitivity of autism, it is
crucial to become aware of feelings, where they are coming from and
what they are. Temple told me to convert my anger to crying, as I
mentioned in an earlier post. There are people I need to stay away
from, or I will melt down quickly. Some man in a restaurant was being
anti-Obama and he pointed at me and said “she voted for him” which
flipped my switch and right then and there I said "if you point at me
again, you’re going to have a big problem on your hands,” with that
crazy look in my eyes which I get. These things can be funny to talk
about but they are actually quite dangerous. I can’t go out too much, I
have to stay home at least two days a week and cocoon to keep myself
level. We can be quite ego-centric, aspies, so I have to watch my pride
as well. Somebody talking during my show, loudly, can really tick me
off. So can arrogant club owners. I tend not to sleep well on those
nights. Look up the Markram theory of autism. We’re hypersensitive,
always will be. Awareness is the first crucial step.