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inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #26 of 150: Tom Howard (tom) Thu 15 Oct 15 06:52
    
Dear Steve, I'm so pissed you gave up on the Well in favor of some
ole book!  And that twitter thing.  Smile.
Now.  All is forgiven, and very, very happy for you for the depth
and wide-spread praise for your book.  Now, if I can cut back a
little bit on the Well, I might have time to read it.  Heh.
Totally seriously, huge congratulations.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #27 of 150: Scott Underwood (esau) Thu 15 Oct 15 08:29
    
I think "crammed with spectrumy loners" could be the Well's new tagline.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #28 of 150: mama need coffee? (pixie) Thu 15 Oct 15 09:32
    
Thank you, Steve. After my first pass through the article I had to
go back and reread to find all these autistic kids committing
horrific crimes and... there were none. Just the one guy. And he was
only diagnosed AFTER he'd been caught planning a crime. 

On first read though, it was alarming. As the parent of a child with
mental illness and major behavioral issues, it rang ALL the bells.
Especially as I have been trying to understand differences between
psychopathy, sociopathy, and mere variations of impaired emotional
development. This article really spikes the YOUR QUIRKY KID COULD BE
A KILLER ball even if you're already aware that Gladwell tends to
float fairly provocative yet thinly substantiated theories.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #29 of 150: Scott Underwood (esau) Thu 15 Oct 15 11:21
    
Steve, speaking of other writers, my condolences on the passing of
Oliver Sacks, who I believe you became close to following your profile
of him in 2002. 

(I wondered idly whether that terrific profile led Sacks to write his
own autobiography, "On the Move," which revealed even more about his
personal life.)

I believe I see some of Sacks's influence in "NeuroTribes," as you try
to present the bigger picture of the people you write about, giving us
complete humans rather than collections of tics or accomplishments.

Sacks of course gave you a great foreword. Was he a help throughout your
process of writing the book?
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #30 of 150: Steve Silberman (digaman) Thu 15 Oct 15 11:41
    
<dmsml>, thanks so much. steve@stevesilberman.com is best.

<esau> said: "I think 'crammed with spectrumy loners' could be the
Well's new tagline." 'Twas ever thus!

And, of course, Lee Felsenstein, one of the WELL's original
spectrumy loners, plays a significant role in my book, in the
chapter about ham radio, science-fiction fandom, and early social
networks.

<esau>, Oliver and I had a mutually beneficial friendship. Thank you
for the condolences -- I think I won't really KNOW in my bones that
he's gone until I go to the West Village and he's just not there
anymore, sipping Lapsang Souchong tea and eating smoked salmon from
Russ and Daughters in a huge apartment full of books with a
panoramic view of 8th Avenue.

Oliver was crucial to the writing of my book in several ways:

1) He practically ordered me to write it! "You MUST write your
book," he told me about six years ago. I heard that paternal
admonition ringing in my head the whole time, particularly when I
thought I had fucked it up so badly that it would never be
published.

2) Once I had figured out some of the major historical "scoops" in
the book, I had a long walk with Oliver down sunny Market Street in
San Francisco. I believe he was wearing what was more or less a
bathrobe. It was a beautiful morning, and he was very excited by
what I told him. He got it all, instantaneously -- and his
enthusiasm really helped me get through the last, very difficult
stages of writing it.

3) I did a couple of major interviews with him for the book. I
believe those conversations helped him loosen up about the material
from his past that he talked about in "On the Move."

4) Oliver literally got up out of his deathbed to write the forward
not long before he died, with the help of his longtime editor and
friend Kate Edgar. Obviously, I'm so incredibly honored and grateful
that those words seem cheap and trashy by comparison to the real
feelings.

5) I definitely helped Oliver finally come out as gay in "On the
Move" -- mostly by providing a living example of a gay man who was
married and out and casual about it all. I embodied a later
generation of free gay people for him I think -- I had never
tormented myself too much with guilt and shame, as he was forced to
after his mother told him, "You're an abomination. I wish you had
never been born." The poison of Leviticus stewed in his veins for
decades. I helped him feel fine about himself. He also liked my
husband <normal> a lot. We had may conversations about Oliver's
gayness, which began in a panic while I was writing the Wired
profile of him here, originally published in 2002.

http://www.wired.com/2015/08/fully-immersive-mind-oliver-sacks/

6) Oliver's writing on autism was a HUGE influence on my book. Time
and time again in my research, when most other authorities on the
subject seemed to be groping in the dark (if not spouting outright
bullshit), Oliver's humane attitude toward his patients would lead
him to insights about autism that the rest of the world would catch
up with only years later. He was often just guessing at or intuiting
the truth, but he was very, very good at that.

I miss the hell out of Oliver.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #31 of 150: Gail Williams (gail) Thu 15 Oct 15 12:21
    
Only knowing him from his writing, that certainly rings true. 

Science guided by kindness, respect and empathy. So glad he got to
know you, Steve.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #32 of 150: Scott Underwood (esau) Thu 15 Oct 15 13:13
    
Talk a little bit about the "scoops," if you would.

Certainly one would be the connection between Hans Asperger and Leo Kanner,
in the form of the diagnostician Georg Frankl. That must have been a
startling discovery.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #33 of 150: Kevin Wheeler (krome) Thu 15 Oct 15 19:43
    
Steve was kind enough to have his publisher send me a copy(actually,
they sent 2 and one has been handed to a friend who teaches 'slow'
children in high school here in Austin) and I have chatted him on FB
a couple times while reading it.  Very well written and researched. 
I have just gotten to the Eugenics parts and, while it's nothing I
didn't know, it bears repeating on a regular basis.  Thanks very
much.  I was getting coffee the other morning and a guy saw my copy
and said a friend of his was reading it.

I am far too gregarious to have ever been said to be autistic, but I
was presented to different shrinks as a child in Houston when my
parents couldn't figure me out.  I love the way the spectrum is
presented and it occurs to me over and over that the hallmark of the
diagnosis is lack of communicative 'ability'.  Speech and vocabulary
may be the greatest gifts we humans have(opposable thumbs are pretty
non-do-without-able as well)but we so quickly and easily forget that
these manifest from the depths of a mind we barely understand and we
put so much undue stock in wasting words for mere communication.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #34 of 150: Paulina Borsook (loris) Thu 15 Oct 15 20:59
    

what a beautiful professional and personal relationship you describe with
oliver --- an exemplar of how two people can help each other along the Path.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #35 of 150: Lee Felsenstein (lee) Fri 16 Oct 15 18:19
    
Well, we're getting somewhere here - I seem to have progressed from
being an "undiagnosed autistic" (in the book) to "spectrummy", which
is a little more in line with the description I provided Steve in my
as-yet-unpublished manuscript. 

I'm requesting here that Steve update his description of me in
future editions to remove the binary (autistic/normal) language. I
was making Steve's main point in my manuscript chapter, and you can
imagine my frustration when I saw myself dropped into a "not normal"
bin. 

It would have been good if I could have seen a draft in time to
submit suggestions - Steve got a few facts a bit twisted up (my
favorite being how my grandfather Will Price "lectured while in
short pants" WHILE A STUDENT AT CORNELL (my emphasis) - the quote is
accurate from his eulogy but the phrase "while in short pants" meant
at the time "while pre-pubescent" - I would have been glad to
straighten this out). 

I wrote the book - a collection of "war stories" and vignettes I had
accumulated when I was blogging - specifically aimed at young,
budding technologists, many of whom will no doubt be much further up
the spectrum than me. My marketing approach as planned is to sell to
others who would give the target reader the book to help them
broaden their horizons - a final chapter and an overall edit are
still pending. (There are a lot of other discussions in it
describing situations I have encountered in my engineering career
and in my formative process - there is only one chapter centered on
autism.)

I think "spectrummy" still needs a bit of work - "WHAT kind of
rummy?" Keep the spectrum but try some other suffixes.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #36 of 150: Steve Silberman (digaman) Fri 16 Oct 15 18:48
    
Thanks, <loris>.

<lee>, I'm not quite sure what you mean. My book is about autism.
Surely I was very clear about that. If my book says anything, it's
that there is no strict binary between autism/"normal." In fact, I
say that over and over again in many different ways.

In the chapter of your manuscript that you sent me called "Me and
Aspberger's," you say these things:  "My mother's family tree
contains Aspberger's Syndrome. I've got a little bit of it in me,
and I consider it my edge… he psychiatric community has phased out
the term 'Aspberger's Syndrome' and now considers it to be part of
the spectrum of autism. That's a wide spectrum, ranging from total
inability to function in society to, well – how I am and even more
asymptotically close to whatever 'normal' (sometimes called
'neurotypical) is... I couldn't actually be diagnosed, though, as my
manifestations of Aspberger's behaviors are quite muted. I took an
on-line interactive test on the subject and came up with a nearly
'normal' score. Still, I can't be dissuaded from believing that I'm
on the spectrum in an important way… [description of social
difficulties] Is this all attributable to Aspberger's in whatever
form I may have inherited it? Probably not entirely, but I still
think that it's likely to some degree."

So it's not like I had some wacky idea that you are on the spectrum
and dropped you into the "not normal" bin. We talked about it on the
phone several times.

I'm sorry that I took the line "lectured in short pants" literally.
It didn't even occur to me that it would be a metaphor.

<esau>, the biggest scoops in my book are these:

1) Hans Asperger was the true discoverer of autism as we know it
today, though he was not the first clinician to notice it. Asperger
discovered what we now call the "spectrum" -- a condition with broad
and diverse manifestations, from profound intellectual disability
and lack of speech (which don't always go together) to chatty folks
with striking gifts that tend to cluster in certain areas, such as
math and science.

2) The biggest scoop for historians in that I discovered that the
man who took the credit for discovering autism in 1943, Leo Kanner
at Johns Hopkins in Baltimore, had help -- from, in fact, Asperger's
chief diagnostician, Georg Frankl, who evaluated Kanner's first
autistic patients. For decades, Kanner's discovery has been
portrayed as primary, with Asperger's a footnote to it; and the two
discoveries have been presented as an amazing coincidence. It's less
amazing when you know that Kanner actually had two members of
Asperger's core team (Georg and his wife Anni Weiss) from Vienna
with him in Baltimore when he made his landmark "discovery." Why
were they there? They were Jews who were forced to leave Vienna when
the Nazis took over. In fact, Kanner *rescued* Georg, which was
heroic. Georg never forgot the spectrum he'd seen in Vienna, either,
but Kanner's much narrower, monolithic model of autism as a rare
form of "childhood psychosis" prevailed for most of the 20th Century
-- much to the detriment of the teenagers, adults, and less
blatantly impaired kids who couldn't get a diagnosis under Kanner's
model.

3) Asperger believed that autism is common, and that once you learn
to recognize it, you see it everywhere. Kanner was convinced that
autism is rare -- a self-fulfilling prophecy based on the fact that
he drew the criteria for diagnosis so narrowly. To get an autism
diagnosis until the 1980s or so, you practically had to go see
either Kanner or one of the clinicians who trained under him and his
colleagues: a very tiny network of specialists indeed. Thus women,
people of color, and other groups were much more apt to be
misdiagnosed with something else (like "mental retardation") if they
were able to get a diagnosis at all.

4) "Rain Man" was a much more groundbreaking movie than most people
believe, because it presented an autistic adult to world audiences
at a time when autistic adults were still basically invisible to
medicine. People now think of Dustin Hoffman's character as a
cliche, but in fact he was a fricking revolution, because even
parents in the autism community had not seen an autistic adult
before. As a result of that film, autism went in a matter of weeks
from a condition that few people had ever heard of to one that was
instantly recognizable, world-wide.

5) At the same time that the criteria for diagnosis were radically
expanded by Lorna Wing, a psychiatrist in London who had read
Asperger's paper (which was still untranslated from the German),
standardized screening tests were introduced that made it possible
for a much wider variety of clinicians to make the diagnosis, rather
than just those in Kanner's network. These three things happened
simultaneously: the widening of the criteria, "Rain Man," and the
introduction of the tests.

6) And the "autism epidemic" began -- which was then attributed to
vaccines by Dr. Andrew Wakefield, a man who admits he "knew nothing
about autism" before he began his infamous study, which has since
been debunked and retracted by the Lancet. But the damage was done.

Those are the major scoops, but there are many many minor ones, such
as the first deep look into the life of Asperger's clinic.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #37 of 150: Steve Silberman (digaman) Fri 16 Oct 15 20:32
    
<lee> and I just had a productive conversation offline in which he
let me know that he'd prefer to be described in future editions as
"on the spectrum" rather than "autistic," which strikes him as
binary. I completely understand this and will honor his request, as
well as change that line about "short pants." I hope that's a
mutually satisfying solution and we can carry on with this
conversation.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #38 of 150: (fom) Fri 16 Oct 15 21:14
    
Yay for you guys' coming to an agreement. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #39 of 150: Paulina Borsook (loris) Fri 16 Oct 15 22:11
    

funny, i remember reading about autism and refrigerator moms in 8th-grade
lifescience in the mid 60s --- and obviously without knowing all we know
now, i knew this had to be wrong. the incidence of Mean Mommies just didn't
correlate with whatever autism might be.

i have given up arguing with anti-vaxxer friends, trying to say
a) there are probably lots of genetic, epigenetic, and environmental causes
and
b) a lot of what is diagnosed as autism now was diagnosed as 'mentally
retarded' or as something else in yrs past.

sigh.

so steve, how do anti-vaxxers respond to your book? do you feel you have
been able to change any hearts and minds?
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #40 of 150: Steve Silberman (digaman) Sat 17 Oct 15 09:05
    
There are some parents, who are probably good people in other ways,
who are obsessed with the notion that vaccines stole their "normal"
child from them, left a hellish changeling in its place, and ruined
their lives. They believe that Big Pharma is fully capable of
covering up a worldwide epidemic of "vaccine injury" (the term they
prefer to "autism") -- which, of course, they are.

But that's not what's happening in this case, as I tried to
meticulously describe in NeuroTribes. My book and TED talk seem to
be speaking to parents who had already been through raging against
Big Pharma, but also read the studies that debunked the
vaccine/autism connection. Many of them had come to the point of
accepting the fact that their children are autistic, and that they
weren't made that way by vaccines; but the question remained: Why
DID the numbers start going up so steeply in the 1990s? That's the
question my book answers.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #41 of 150: Steve Silberman (digaman) Sat 17 Oct 15 09:12
    
And the main point is: We all end up in the same place, realizing
how few resources our society has built for autistic people of all
ages while arguing about what causes autism. What distinguishes the
truly hardcore anti-vaxxers is that they *discourage* the idea of
making accommodations for autistic people (always children in their
eyes) because they believe that will make the world complacent about
autism instead of determined to find a cure.

Think I'm exaggerating?
http://www.ageofautism.com/2011/07/libraries-and-autism-connected.html

Of course, websites like that hate my book, and lie about it
consistently. I see myself described as an "evil and dangerous man."
It's intense.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #42 of 150: Don Mussell (dmsml) Sat 17 Oct 15 10:33
    
Thanks for the link Steve. I usually don't pay any attention to that
kind of belief system, since it seems so ignorant and toxic. Kind of
like an alternate universe, and not a friendly place.
     It is eye-oping to see what and who opposes your studies and
the book, and how they characterize the human condition. Their
virulent opposition to rational thought is disturbing. 
    Anyway, carry on.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #43 of 150: Steve Silberman (digaman) Sat 17 Oct 15 10:36
    
Thanks, Don!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #44 of 150: Dave Waite (dwaite) Sat 17 Oct 15 12:17
    
Steve - Let me also pipe in and congratulate you on this
publication.  I hope it continues to win awards for it's depth and
broad approach to autism. 

I'm glad you brought up the movie "Rain Man" as this was a tipping
point for my understanding of spectrum.  I took away from that movie
that everyone might just have a touch of autism in them (or be
within the spectrum) - some stronger than others, some less.  I
don't think one constantly needs to be within the spectrum to have
some part of Dustin Hoffman's character (Raymond) touch them with a
taste of personal experience.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #45 of 150: Scott Underwood (esau) Sat 17 Oct 15 20:35
    
The chapter on "Rain Main" was really a surprise to me, because I
recognized that I might first have learned the word then. At some point
before then, I had learned of "idiot savants," and this seemed to be a
much better name for a similar type of person.

The history of the making of the movie, and of its effect on general
awareness and (within the spectrum community) a kind of relief at finally
having a thing to point at -- these were surely beyond the goals of the
people involved.

And I'm sorry if I'm forgetting and you touched on this -- was there
any negative backlash from the community as well? Of course, not every
autistic child demonstrates mental gymnastics, so it wouldn't surprise me
to learn that some were disappointed that Raymond Babbit was so outwardly
"high functioning."
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #46 of 150: Virtual Sea Monkey (karish) Sun 18 Oct 15 09:12
    
Steve, as someone who can usually pass for neurotypical, what I find
most compelling about Neurotribes is the sensitivity with which you
describe important aspects of so many peoples' lives. I experience
this through my flavor of empathy. What have autistic people told
you about how they get meaning from the book?
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #47 of 150: John Spears (banjojohn) Sun 18 Oct 15 10:52
    
I also pass, or tried for 56 years, as NT. I'd love to read this
book with ya'll, but I'm a library outlaw, and lack the funds. I
spent part of yesterday reading this topic, as well as the one
devoted to "Aspergirls", and I look forward to this discussion, book
or not. 

My Dad was a geologist professor in my youth, and he often told me
about "idiot savants". I wasn't one of those, but I was the "little
professor" in every way imaginable. Looking back on my life, there
is no doubt that I am on the spectrum. I'm hetero, yet I've never
had a relationship last for longer than 6 months. After my parents
died, I found myself alone in the world, ostracized by my remaining
sibling and her husband.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #48 of 150: John Spears (banjojohn) Sun 18 Oct 15 11:00
    
And, I'd like to add, I can remember being bullied at my own 6th
birthday party.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #49 of 150: Peter Meuleners (pjm) Sun 18 Oct 15 11:38
    
Steve,  if you send John a book from your signed stash I'll pay for
it.  I'm at pjm@well.com.  Let me know what it will take.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #50 of 150: Renshin Bunce (renshin) Sun 18 Oct 15 14:22
    
Nice, Peter.  Can I pick up half?
  

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