Inkwell: Authors and Artists

    

<digaman>, in the 'dear prudence' column on slate today, someone asked about
what to do about the fact that she just figured out that her adult brother
is on the spectrum. prudence recommended 'the big short' because an aspergy
character is one of the characters (with his attention to tiny numerical
detail) who figured out a particular financial scam. WHY WASNT YOUR BOOK
MENTIONED??? i ask you --- you should get your publicist right on it!

and yes, all hopes for all possible awards for you.
  

    
One of the things that fascinated me about Ms. Grandin was a drawing
I saw from her sketchbook regarding the movement of animals to
slaughter.
It immediately brought me to a  remembrance of a drawing I in the
late 70s or early 80s depicting  an "autistic" youths interpretation
of a bicycle.
All of the children were asked to draw a bicycle.
All of the drawings of bicycles were viewed from the side - seeing
both wheels as round, but the autistic drawing showed the bike from
a birds view.   Basically a straight line except for the seat and
handlebars(with slightly more detail).  I wish I could find that
picture.

I'm sorry for going off on a tangent, but the remarkable ability to
see things differently, and not discount those interpretations, but
look for the insight on why has always weighed heavily in my mind. 
Some of our best discoveries were because someone looked at things
differently.
  

    
Well said!
  

    
<jonl>, sorry I missed this earlier:

>  Is
there any movement to upgrade the understanding of autism in public
schools, so that the "special needs" programs are more nurturing?

Yes, there is, but I'm not an expert in this area by any means. I
hear from teachers, parents, and students that it's a constant
struggle. Nurturing inclusive forms of education is good for both
kids on the spectrum and their typical peers, because it builds the
foundation of a more tolerant society and reduces bullying. But each
kid is different, so the appropriate setting must be suited to the
kid. That's one of the huge issues that society has been overlooking
and underfunding while arguing about vaccines and spending millions
of dollars on research into the causes of autism.
  

    

I wonder if you'd like to comment about this Atlantic article about women
and girls on the spectrum:



The Invisible Women With Autism

http://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-
autism/410806/

Misdiagnosed and misunderstood, autistic women and girls frequently
struggle to get the support they need.

Apoorva Mandavilli Oct 22, 2015

It took 10 years, 14 psychiatrists, 17 medications, and nine diagnoses
before someone finally realized that what Maya has is autism. Maya loves
numbers, and with her impeccable memory, she can rattle off these stats:
that the very first psychiatrist she saw later lost his right to
practice because he slept with his patients. That psychiatrist number 12
met with her for all of seven minutes and sent her out with no answers.
That during her second year at Cambridge University in the U.K.,
industrial doses of the antipsychotic quetiapine led her to pack on more
than 40 pounds and sleep 17 hours a day. (Maya requested that her last
name not be used in this story.)

But those numbers don’t do justice to her story. It’s the long list of
diagnoses Maya collected before she was 21, from borderline personality
disorder to agoraphobia to obsessive-compulsive disorder, that begin to
hint at how little we understand autism in women.

Her conversation with psychiatrist number 14 went something like this:

Do you hear things that others don’t?

Yes. (Maya’s hearing is excellent.)

Do you think others are talking about you behind your back?

Yes. (Maya’s extended family is particularly gossipy.)

The psychiatrist didn’t explain exactly what he was trying to assess.
Literal to a fault, Maya didn’t explain what she meant by her answers.
She left his office with her eighth diagnosis: paranoid personality
disorder.

Maya does have some of the conditions she’s been diagnosed with over
the years—she’s been depressed since the age of 11, has crippling social
anxiety, and in her teens, wrestled with anorexia. But these were just
expressions of the autism that was there for anyone to see had they
looked closer. “It’s all secondary to the Asperger’s,” says Maya,
now
24. “I get depressed and anxious because life is difficult; it’s not the
other way around.”

It’s not uncommon for young women like Maya to be repeatedly misdiagnosed.

...
  

    
Interesting article -- which has me wondering: where are the best current
descriptions of these 'neuro-disorders'  ?

For example, how good are discriptions such as this:

<http://www.autismsciencefoundation.org/what-is-autism>

which ends with:

  "There are five Autism Spectrum Disorders, sometimes called
   Pervasive Developmental Disorders (PDD):
      * PDD-NOS (Pervasive Developmental Delay - Not Otherwise Specified).
      * Autism (sometimes referred to as Classic Autism, Early Infantile
        Autism, Childhood Autism, or Autistic Disorder)
      * Asperger Syndrome
      * Rett Syndrome
      * Childhood Disintegrative Disorder"
  

    
The article <wickett> cites is quite sad -- she had a hard life. It
underscores how different each patient's case is, and (nongrammatically)
how more unique each girl's case is, since we have even more societal
constraints around normal behavior for girls.

The list in <106> is interesting, and perhaps out of date -- those five
disorders are not found in the DSM description, I don't think:

<https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-
criteria>

For instance, I hadn't heard of Rett syndrome, and it doesn't seem to
appear in "NeuroTribes." It's a fairly severe brain disorder with some
autism-like features (like repetitive hand movements) that almost only
affects girls. It is no longer listed in the DSM because it has a physical
aspect and a known molecular origin. In its way, it's like Down syndrome,
a genetic disorder that has both physical and neurological components.
  

    
Thanks. I guess we are bumping up against the challenge of trying to
get a handle on an unknown number of underlying causes by cataloging
various observable symptoms.

Is Rett syndrome's being dropped from the DSM an example of a disorder
becoming sufficiently well understood that it is no longer lumped in
with the less certain 'spectrum' disorders? Is this a pattern we should
expect to repeat in the future?
  

    
The history of the DSM is probably worth a book on its own.
  

    
Steve, it's our last official day, so I wanted to ask one last question
about you and your work. 

You are a science journalist, though in the tradition of your friend
Oliver Sacks you've clearly always had your eye on the personal stories
of the people behind the science. Your friends on the Well also know
your deep interest in music, which you also write about eloquently.

Now you are recognized as the reigning expert on Autism Spectrum Disorder,
and your work begins to edge into advocacy and activism on behalf of
those affected, and to combat ignorance of bad science.

How does that role suit you? And what's next for you -- do you see
yourself getting deeper into the battles on this front, or do other
vistas beckon?
  

    
<wickett>, I liked that article very much. It's a hugely important
issue.

Thanks, <esau>.

> the reigning expert on Autism Spectrum Disorder,

Heaven forbid! I am certainly not this. I am the reigning expert on
the social history of autism chronicled in my book. My book is a
very personal take on the subject that happens to be the most
accessible take on that particular aspect of history. There are at
least two other good ones -- Adam Feinstein's "A History of Autism"
and Gil Eyal's "The Autism Matrix" -- but those books are intended
primarily for academic audiences (particularly Eyal's), not for a
broad lay readership. My book also contains "scoops" that the others
don't, such as my discovery of the connection between Leo Kanner and
Hans Asperger through Georg Frankl. 

> and your work begins to edge into advocacy and activism on behalf
of
those affected, and to combat ignorance of bad science. How does
that role suit you?

Very good question. I'm just feeling it out. I've obviously done a
ton of media, but the book just came out two months ago. I'm already
wearying of the sound of my own voice talking on the subject. I
think that autistic people themselves should be at the forefront of
advocating for the autistic community. My position as a neurotypical
ally has been strategically useful for now, but hopefully, young
autism advocates, like the members of the Autistic Self-Advocacy
Network (autisticadvocacy.org), will make me obsolete.
  

    
Thank you so much, <jonl> and <esau>, for hosting this conversation.
I very much enjoyed it. Thank you all for asking such intelligent
questions.

Feel free to follow my appearance schedule at stevesilberman.com if
you want to say hi in person. See you down the road.
  

    

Thank you, Steve, for the book, this conversation, the light you have shone
in dark corners, your interweaving of both the connections and the
dissonance of the past 80 odd years, and your support and preparation for 
the next stage.
  

    
Thank you all, this has been wonderful, illuminating and deep.
  

    
Best Inkwell in a long time.  Thanks!
  

    
I hope you'll be in Seattle, Steve. (I hope you haven't been here
without my finding that information.) We are the epicenter of the
Applied Behavioral Analysis approach to early intervention, I'd be
interested to know the view of that rigid, behaviorist method among
people with autism.

In December I'll get to attend a 4 hour workshop on a play-based
intervention ("floor time", with some modifications on the original)
and I wonder if any other Seattleites will be there... 
  

    
Dear Steve, keep on keeping on. Your work helps so many people. 
  

    
Yes, thanks Steve. The book is a great contribution to the on-going
journey. 
  

    


Thanks so much, Steve. And congratulations on the success of the
book. 
  

    
Thanks for sharing your stories here Steve.  I hope you continued
success in your endeavors.  Best topic on the well!
  

    
Thanks so much, folks! It was nice to be back on the WELL again, too
-- (sob). Once the book tsunami is over, I'll try to get back here
more.

By the way, if any of you are New Yorkers, I'll be interviewed at
NYU tonight at 6 by WSJ science journalist Robert Lee Hotz:

Arthur L. Carter Journalism Institute at New York University 20
Cooper Square, 7th floor Commons, New York, NY

See all you folks later!
  

    
We miss you around here, Steve.

Congratulations on this extremely important work. I kvell for your success!!
  

    
Just want to chime in with a big THANKS to Steve and everybody who
joined the conversation! So great to watch Steve's star rising...
  

    
And congratulations to Steve Silberman on winning the Samuel Johnson
Prize for Non-Fiction today:

<http://www.thesamueljohnsonprize.co.uk/news/samuel-johnson-prize-non-fiction-2
015-winner>
  

    
"First popular science book to win the prize in its 17-year
history."  I am so happy for you, Steve.