Inkwell: Authors and Artists

    
This week in Inwell.vue, we welcome Rudy Simone, author of Aspergirls:
Empowering Females with Asperger’s Syndrome.

Rudy Simone is an Asperger Syndrome author and consultant, novelist,
screenwriter and a Jazz singer/comedienne. She resides and performs
mostly in the San Francisco Bay Area, but speaks on Asperger syndrome
throughout the world. Her books, talks and websites supply positive
information and support to individuals, families, AS groups and
professionals. She is the author of Asperger’s on the Job: Must-Have
Advice for People with Asperger’s or High-Functioning Autism, and their
Employers, Educators, and Advocates with a foreword by Temple Grandin
(Future Horizons 2010) and Aspergirls: Empowering Females with
Asperger’s Syndrome, as well as 22 Things a Woman Must Know if She
Loves a Man with Asperger Syndrome (Jessica Kingsley 2009). Her
forthcoming novel The Fool – Orsath the Singer is Part One of a YA
fantasy trilogy. She is also a professional blogger with Psychology
Today. Rudy’s goal is to help other Aspies tap into their talents and
special interests and fully engage with life, without letting the
challenges of autism prevent this from happening.

Web sites:

www.help4aspergers.com
www.RudySimoneSpeakeasyJazz.com
  

    <scribbled by julieswn Mon 25 Oct 10 18:20>
  

    
Leading the interview will be Steve Silberman, our own <digaman> on
the WELL:

Steve Silberman's articles on science, literature, and music have  
appeared in Wired, the New Yorker, GQ, Nature, Salon, the Shambhala  
Sun, and many other national publications. He was the co-producer of
the Grateful Dead's box set "So Many Roads (1965-1995)," and co-wrote
"Skeleton Key: A Dictionary for Deadheads" with David Shenk. In the
1980s, he was poet Allen Ginsberg's teaching assistant at Naropa
University (naropa.edu). A long-time conference host on the WELL,
Steve lives with his husband, Keith, in San Francisco.

Welcome to Inkwell.vue Rudy and Steve!
  

    
Thanks, Julie!  I'm very honored to have Rudy Simone here to talk with us.  
I love her new book "Aspergirls," which gave me a lot of insight into the
challenges that women on the autism spectrum face, and even beyond that,
offers insight into what *any* woman who doesn't fit standard gender roles
faces, including so-called "neurotypical" (non-autistic) women.

It's important to mention that I also have a new blog on the Public 
Library of Science called NeuroTribes that talks in part about autism and 
neurodiversity.  I have a new post this morning that goes into depth about 
Rudy and her book:

http://blogs.plos.org/neurotribes/

(If you're reading this after the day this conversation went live, please
check the "Recent Posts" list under the search button to find the one 
about Aspergirls.)

It feels particularly apt to be talking to Rudy now, because like many
people, I was deeply touched by the recent HBO biopic of Temple Grandin,
an autistic woman who had to endure a lot of bullying in school, as well
as prevail in the face of now-discredited theories of autism being caused
by bad parenting and other psychological factors, to become one of the
most influential animal-behavior experts in the world. One of the most
groundbreaking aspects of the film, I felt, was that instead of being
filmed from a neurotypical perspective, the filmmakers often took
Grandin's point of view, so that many of the daily stimuli that can
trigger sensory overload in autistic people -- such as the beating of a
ceiling fan or the squeaking of a magic marker -- were rendered with
excruciating vividness.

I'm curious, Rudy -- what did you think of the Grandin film, and what 
feelings did it bring up for you as you watched it?

Also, one of the differences between you and Grandin is that she was 
diagnosed as having autism a lot earlier in her life than you were. 
According to you and other authorities on the subject, diagnosis in 
mid-life is not at all uncommon for Aspie women. What is it about Asperger 
Syndrome in women, and about gender roles in general, that results in many 
women not realizing that they're on the spectrum until mid-life?  And how 
was that process for you?  Did it cause you to reexamine your life 
previous to the diagnosis in a new light?
  

    
Julie, if you could also post information here for off-Well people who 
want to join is and ask Rudy questions, I'd appreciate it.

Rudy, I also want to ask you one more question.  Feel free to answer these 
questions in any order you please and ignore questions you don't want to 
deal with.

One of the things I've heard people say to some folks with Asperger 
Syndrome is, "Oh, your autism is obviously not *that bad.*  You can walk, 
talk -- even sing -- and pass for normal."  They mean these things to be a 
compliment, but how do they come across to an autistic person?  What do 
comments like this say about our ideas of what Asperger Syndrome is?  I 
know it's not an exact parallel, but when people say to me, "Wow, Steve, I 
would never have guessed that you're gay -- you don't seem gay," I feel 
really weird, as if I've been insulted and paid a compliment in the same 
sentence.

So what do "compliments" like "you don't seem that bad" seem like to 
someone on the spectrum?

If anyone else reading this wants to answer that question to, please speak 
up!  This is a collective conversation.  Please join in.
  

    
(Sorry, in the first sentence of the last post I meant to type, "join IN 
and ask Rudy questions.")
  

    
First of all, I absolutely love the Temple Grandin film and it
deserved all the accolades and honors it was awarded. It was a highly
emotional experience for me, but I think her story has elements
virtually everyone can relate to. No one likes to be misunderstood,
doubted or underestimated. But yes, I related to her fixation on
patterns, her sensitivities to ordinary stimuli, her social
awkwardness, her ingenuousness (she’s still like that) and to the
bullying and ostracizing which she cruelly suffered. I wish I could say
I related to her passion for science and invention, but I am quite
familiar with the way she taught herself to do anything she was
interested in. That is the autistic way.

For women who are not classic autistics, who are not as obviously
affected, whose verbal skills are on a par with or beyond their peers,
we often remain in the autism closet for varying lengths of time. A
little girl spinning, rocking, fixating, obsessing may not even be
considered unusual, and she may even be gifted in some ways, so that is
what is noticed more than the deficits and struggles. And then of
course as we get older, females have a bit more natural curiosity to
solve the social puzzle, to try and understand Relationships. Plus, we
tend have more social pressure to behave appropriately and since we’re
fairly adept at mimicking, we may remain ‘stealth’ to everyone, even to
ourselves. I know from my own experience, I kept waiting to ‘grow out
of it’ but you never do. I grew out of mutism and seizures, but not the
rest of it. And some of the sensory stuff has gotten worse. The
process of becoming aware that I was on the autism spectrum was a slow
unfolding. I started down the Asperger path in search of an explanation
for my then–boyfriend, who was undiagnosed, or rather misdiagnosed.
Then it was a whole year of ‘hmmm,’ then ‘ah-ha’ and finally ‘eureka’
moments. Most of the info on women I gleaned from books whose primary
subjects were men, and there would only be a paragraph or two per
chapter highlighting how the same traits might manifest in a woman.

My first AS book was actually published before I knew I was on the
spectrum. And yes, of course I now get to re-frame my whole life in a
new light. I’m not nostalgic, nor am I bitter, but life was lonely,
hard-edged and painful. It’s still hard but better than it was because
at least now I have an explanation, and I can share that explanation
with others. 

As for the 'gay' parallel, I love it and I am honored by it. I use the
‘closet’ reference a lot, for it’s relevant to anyone who has to keep
their true self hidden. That is never good. Like others, I do believe
that autism awareness, autism rights, i.e. the right to live
unharassed, to hold jobs, go to public places, act in accordance with
our most authentic selves, is a movement whose time has come and it is
a natural progression from other civil rights movements. Saying to
someone “you don’t seem like you have asperger’s” invalidates that
person’s experience. It’s not meant to insult, but insult it does. It’s
like me saying to someone who’s been through a war—gee, you don’t seem
like you were ever in a battle—just because they’re not bloodied and
bandaged or shell-shocked at that moment. Am I supposed to carry all my
autistic traits on my sleeve for the world to see all at once? If I
did, I wouldn’t be very functional now would I? It’s such a strange
dichotomy. Often people say to my partner “Rudy doesn’t seem like she
has Aspergers” but then in another breath they are asking “what’s wrong
with Rudy?” when I act in a way they don’t understand. People try to
put things into frameworks that they can understand, that they can
relate to. As I always say, non autistic (neurotypical) people will
have some of the same experiences we do—it’s about quantity, frequency,
and intensity. Everybody visits, but we live there. 
  

    
Wonderful answers, Rudy, thank you.

How did you become a writer?  What other writers do you feel have done
justice to the complex subject of autism?  Besides your own new book, are
there any books that you could recommend for people who are unsure if 
they're on the spectrum themselves?
  

    
(For our readers who are reading this off-WELL, please send your
questions to inkwell@well.com and we will post them.)
  

    
"I’m not nostalgic, nor am I bitter, but life was lonely,
hard-edged and painful. It’s still hard but better than it was because
at least now I have an explanation, and I can share that explanation
with others."

That is my exact experience.  I am really looking forward to the rest
of this conversation and delving more deeply into the book and into
some of my own experiences from from the male side of the equation.  I
am already seeing many parallels.

You are a treasure.  Thank you for doing this.  (You too, Steve. :-)
  

    
Everyone is a writer on some level. I did some dabbling through the
years, won a contest when I was a kid, wrote 100+ songs in my teens and
20’s, and boxes of journals in my 30’s. My first pro job was working
for the guys in ghost hunters (TAPS), writing for their magazine. I
became an editor around the same time (about 2005). My first published
book (22 things) just exploded onto my computer, the bulk of it written
in two days, padded out in a few more. It was the result of
frustration with my Aspergian partner, and some early research I’d done
on Aspergers. It was an informal and controversial book, but I receive
emails every week telling me it’s helped people so I make no apologies
for it. I’ve finished three more since (Aspergirls, Aspergers on the
Job and a novel), and I have a screenplay making the rounds at the
moment. None of these came as easy as the first, taking 1 – 6 years
apiece to finish. I also spend a lot of time now writing for my jazz
and comedy act.
When I speak to people they don’t seem to get me, but when I write,
they do. This is also a common trait in autism because we get
overwhelmed in social situations, don’t know what to say, don’t read
social cues, etc. People who don’t know I write think I have nothing to
say of any importance or worth—they think I’m ditzy and a bit stupid.
I know that because I’ve been told that and because I never get
included or invited into gatherings or conversations. There are people
with autism who cannot speak at all, or who can barely speak, yet can
write beautiful stories or journal their thoughts. Without those
writings, you’d never know the depth of their experience. Some create
incredible artwork, or have astounding musical ability. In a physical
parallel, most of us suck at ball sports that require bilateral or
hand-eye coordination but swim like dolphins; or we can’t do a
choreographed dance to save or lives, but alone we are Isadora Duncan.
It’s the way we process stuff that makes certain things difficult and
the presence of others exacerbates that. (The exception to this is when
we are monologuing or performing.)

If you think you might be on the spectrum, I’m told that Aspergirls is
helpful for both men and women, surprisingly. Of course you have to do
a lot of research, take the AQ (autism quotient) test which you can
find online and then get a professional opinion, from someone who KNOWS
Aspergers as a whole, not as the sum of its parts. My website has two
pages of ‘traits’ and gets a lot of hits. I’m told it has one of the
most comprehensive and accurate lists you can find. I haven’t read as
many AS books as I probably should have, simply because when I am
writing one, I don’t want to be influenced by someone else’s work and
I’m always writing. But I think Liane Holiday Willey’s “Pretending to
be Normal” is a great one for females as are Donna Williams’ books, and
“Aspergers from the Inside Out” by Michael John Carley for males,
although all can be relevant for both sexes. Temple Grandin’s “Thinking
in Pictures” is just like her, brilliant, captivating, guileless, and
deeply affecting. I wrote the foreword for a wonderful book called
“Aspergers in Pink” – I don’t like the title but it’s a great book for
parents with school-age children on the spectrum.
  

    
Love Donna Williams.  I will write a mini bio relating to Aspergers
later today when I have more time.
  

    
I'm about halfway through the book. I remember when Wired, I think it
was, did a self-test on ADD and all my friends read that and decided
they were ADD, and then a while later an article came out (Steve's,
wasn't it?) about Asperger's and all my friends read that and decided
they were Asperger's. :) (I lived in Silicon Valley at the time and
hung out with a lot of computer geeks.) Have you looked at co-morbidity
of ADD and Asperger's? How do you see them as similar and different?

I don't know whether I'm ADD or Asperger's or both or neither. I've
never been diagnosed nor gone to any effort to be. On the other hand, I
do have some of the traits of each, and most guys I've gone out with
have been one or the other or both, so I assume there's *something*
about me that makes such guys seem appealing or otherwise familiar. My
current partner believes he's Asperger's and his nephew is pretty
severely Aspergers; frankly, I think his dad is on the spectrum as
well. And I'm very interested to read your 22 Things book. :)

Anyway, it was interesting to read the book and in the process run
across several descriptions of traits that Asperger's women and I
share.

Having now been diagnosed with Asperger's, what change has it made in
your life? A male friend, former partner, had decided a while back he
was Asperger's and made the decision to be diagnosed (which he was)
because he was having issues at work and he felt that having a
diagnosis would help him use the Asperger's as a disability (which for
him it was) and to have them find ways to accommodate him. Are there
advantages or disadvantages to being formally diagnosed?

I'm also wondering to what degree *any* person of sufficiently high
intelligence is practically be definition going to present as
Asperger's, ADD, or both. 

Now that the conversation is started, I'm going to need to finish the
book. :)
  

    
Thanks so much, everyone! Rudy has a gig today, but she will be back
tomorrow. If you're on the Well, feel free to post questions, or email
them to inkwell@well.com.

Sharon, the "AQ test" was published alongside my "Geek Syndrome"
story, in the same issue.  Frankly, I didn't even know it was going to
be included and was a bit annoyed, since it didn't seem very rigorous,
to say the least!  Obviously, a real diagnosis requires a real
diagnostician. But people do love taking self-tests like that, and I've
had dozens of people tell me over the years that they became
interested in autism after taking that test and scoring highly. These
days, many people also diagnose themselves after having autistic kids.

Rudy, I was struck by the fact that after you were bullied when you
were a teenager, you stopped singing in public -- yet now you do it
professionally.  Do you feel like you reclaim some part of your
personal power from the bullies by doing that?

I have to admit, I haven't read your first book about having an
Aspergian partner. If I'm not mistaken, your current partner is
neurotypical (non-autistic). I'm sure every relationship is unique, and
that you can't make generalizations.  But does the "texture" of a
relationship with another Aspergian feel very different from a
relationship with an NT?
  

    
Hi Sharon - (I have some time before my gig, so I'll address your
questions now)
There are definite advantages to a diagnosis, but not always in the
form of official benefits and protection. For us, it is really about
validation. It is still very difficult for adults and female adults
particularly, to receive a diagnosis (it usually happens after their
child does). I am compiling a still very slim list of doctors that do
diagnosis adult women and who come recommended. It's still not even big
enough to publish. I had doctors scoff at me when I told them I
thought i had AS, but now I have what I call a "peer diagnosis". When
you can sit and chat with some of the world's top authorities about
your Aspergers, and they don't doubt for a moment you have it, then
it's kind of moot to pay my local shrink $2000 to do so, especially
after she told me she'd run every test in the book to make sure I
didn't have it. She also said she'd interview my mom, who's in her
seventies and can't remember my real hair color, much less my
childhood. That is why I wrote Aspergirls, to help doctors like her
understand what we go through and how our traits manifest, and why I
chose mostly officially diagnosed women to interview. Which brings me
to your question, how has it changed my life? Well, it became a
personal calling, it was one of those real "this is fate" things for
me. I spend a lot of time writing about Aspergers, answering emails,
doing interviews, traveling, doing presentations. But I try not to let
it become my main vocation. Because we are so obsessive, we can become
so with Aspergers to the exclusion of all else. I see it all the time.
It's the backdrop, not the play. 
I don't know much about ADD. god only knows why that exists-- is it
just the stress of modern life? All the myriad, invisible waves and
signals flying through the air? I don't know. But I do think that the
absent-minded professor qualities of autistic people can be mistaken
for ADD. But really we have excellent hyperfocus, so I should think
they'd be mutually exclusive. I always raise an eyebrow, at least
inwardly, when someone says they are diagnosed with both. ASDs comprise
so many traits, you don't want to say you have a syndrome for each
one. You'd need a hell-uv-an over-sized business card.
  

    <scribbled by betsys Sun 7 Nov 10 10:02>
  

    <scribbled by betsys Sun 7 Nov 10 10:02>
  

    
Great post that I identify with a lot.  

The test that's making the rounds on Facebook?  I got a 43.  I have
taken several other tests and come in high every time.
  

    
From off-WELL reader Nicole Nicholson:

I have a question for Ms. Simone. In your travels and your experiences
meeting women on the spectrum, have you met very many women of color
on the spectrum? One of the reasons I started my blog, Woman With
Asperger's, was that I didn't see too many portrayals of Aspergians
that looked like me, in terms of either gender or ethnicity (I am
multiracial of African, European, and Native American ancestry). Also,
autism is already misunderstood by the general public and even more so
I think in ethnic communities in the Unites States, so I wonder how
many of us end up being diagnosed or even considering autism/Asperger's
as a possibility. What are your thoughts on this?
  

    
Actually, people with ADD can have excellent hyperfocus, sometimes to
their detriment. ADD is more a case of inability to control focus
rather than inability to focus. 

When I asked how it affected your life, yes, I read that you started
writing books and so on. I was thinking more in the sense of outsiders.
Do you get different responses now -- 'oh, it's okay, Rudy has
Aspergers' -- when before they were impatient with some of your
differences? Have you gotten access to treatments or programs that you
didn't have access to without diagnosis? that sort of thing.
  

    
Just catching up with this topic this morning, and after reading the
"list of female asperger's traits" on the rudy's blog linked above, I
was just sad to find out that 'Aspergirls' is not available in a Kindle
edition, because that list is ME.  
  

    
Steve, you asked me if I feel like I reclaim some part of my personal
power from the bullies by performing: 
Yes and no.  I never stopped singing altogether but the joy, the
gregariousness, spontaneity, trust in people, that left me. Once a
child realizes that the world is not safe, it’s difficult to undo that
belief. I got my first professional singing job when I was only 17
years old in Buffalo, NY (I lied about my age) and became very popular
very quickly and then I felt like I had revenge because my picture was
in the paper all the time, etc. (I had a different name back then.) But
the Aspergers made me an easy target for a Svengali-like
boyfriend/guitarist, people confused me, travel overwhelmed me, club
owners frightened me and I had many meltdowns and nervous breakdowns.
That gig lasted a few years and I’ve only done sporadic singing since,
nothing of any significance (until now, I hope). I’m smart enough to
realize that performing doesn’t make me better or special and certainly
doesn’t make me richer so it is no longer about personal power. I’m
all about the craft of singing and being funny. I do still get hurt by
inattentive or unappreciative audiences too. I had a couple of very
noisy tables last night that don’t realize I’m anyone who’s anyone.
They didn’t get my sense of humor either. When that happens, I still
struggle with emotions and meltdowns. People with autism are
emotionally like children, that is why we are so guileless, and we
remain that way, we mature emotionally much slower than everyone else.
I don’t melt down in public so much anymore, but I go home and cry and
have nightmares and melt down in my dreams, scream, yell, throw things.
That’s what happened just because I had a shit gig. The bullying I
endured was quite significant. I was beaten in front of a crowd, yes,
but I also was in a bunch of fistfights following on the heels of
that—once people see you are an easy target they all want to take a
crack at you. And because of mutism and the paralysis that steals over
your limbs, I was even stabbed with a compass in art class and didn’t
even say ‘ouch’ even though it was deep in my thigh. That boy killed
someone a year later with a knife, so it was a ‘real’ stab too.

Steve, yes it is quite different to be in an AS/AS relationship and an
AS/NT one. My current partner acts as a sort of social translator. He
explains why people say and do the things they do, because often these
exchanges and rituals seem either unnecessary or just mysterious to me.
I ask him for advice on how to approach people or tell them what I
need to tell them, because I can often be abrasive. Sometimes I think
he’s too “touchy feely” with other people’s emotions, and we have
plenty of debates about things, but we balance each other out very
well. When I had an AS boyfriend, we had a very pleasant, cocooned sort
of life, work, play pool, eat, drink, watch a film. That was a much
simpler life but he wasn’t into our relationship as much as I was and
would often disappear for weeks. I couldn’t stand that. But there are
plenty of success stories on both sides.

Betsy, I am curious about your comment “It certainly doesn't feel safe
to make it an issue at work, especially since AS is practically a job
requirement in my field.” Why then is it not safe? You feel it would be
rocking the boat unnecessarily? I would like Aspergers to be so
de-stigmatized, that a person can say “I have Aspergers” the same way
they would say (at least in San Fran) “I’m gay”. It isn’t for
attention, but rather, it just IS.  How does it change anything? AS is
not an excuse, nor to me is it a disability, but it is a reason. That
is all. 

Uber-muso --I appreciate your comments.

Nicole – I have not read your blog 'Woman with Aspergers' that I can
recall, I’ll have to check it out. I have not seen many people of color
at groups or conferences and those I have I believe were not on the
spectrum, but were professionals in the field. I get many emails from
women and some of them could be women of color, but somehow I think
they might tell me if they were. I’ve often wondered about that, but
haven’t had a chance to look into it. How bout you? Have you met or
heard from others?

Sharon - Having a diagnosis has changed my self-confidence but not
other’s perceptions so much, as I said, people still say "what's wrong
with Rudy?" when I act 'funny'. Unless people are on the spectrum or
make it a special course of study, they don't get it.
  

    
oh, I meant i scream, yell and throw things in my dreams, not in
waking life so much anymore. But I used to have terrible tantrums.
(anyway, my San Fran apt is too small to throw things! ) Temple told me
to convert my meltdowns to crying. No one gets arrested for crying,
she said.
  

    
I'm still working out a post of my experiences, the more you post the
tougher it gets because I identify with you so much (and I thank you
for that), but I feel compelled to ask a really shallow question.  What
do you think of the TV series Bones?
  

    
#20: I'm reading that list, and part of me is going, omg, that's me,
more than half of that stuff I agree with, and part of me is going, but
isn't a lot of that stuff true for nearly anybody?

(I should mention that my boyfriend, who identifies as Aspie though
isn't diagnosed, taught me the concept of people being 'matchers,' or
more likely to agree with things, and 'mismatchers,' or people who are
more likely to disagree with things. I was glad he explained that
concept to me, partly because I'm a mismatcher myself, but also because
mismatchers can be really damned annoying sometimes because you go
show them something you're proud of and the first thing they do is pick
at something, so it has kept me from killing him. :) Anyway, for both
him and me, our first reaction to looking at something like your list
is to find fault with it. :) )
  

    
(That sounds like the famous distinction between "lumpers"--people who
tend to focus on similarities--and "splitters"--people who tend to
focus on differences.)