inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #51 of 150: Steve Silberman (digaman) Sun 18 Oct 15 14:27
    
<pjm>: That's very generous.  You can order a signed copy for John
directly from the Booksmith:
http://www.booksmith.com/event/steve-silberman-neurotribes. Please
specify John's name in the Comments box at checkout. Thanks.

<esau> asked: was there any negative backlash [to "Rain Man"] from
the community as well?… t wouldn't surprise me to learn that some
were disappointed that Raymond Babbit was so outwardly "high
functioning."

There is some backlash to "Rain Man" now among younger folks on the
spectrum. They see the character of Raymond Babbitt as an autistic
stereotype, if not THE autistic stereotype. The thing is, there WAS
no stereotype of autistic adults when "Rain Man" was made. The
diagnosis was only just then becoming available to adults, and the
introduction of the Asperger syndrome diagnosis to the DSM was still
years away. Autistic adults were still mostly invisible to medicine,
and were completely invisible to the culture at large. So, to put an
autistic adult onscreen was totally groundbreaking. Even parents who
had been in the autism community for years had never seen an
autistic middle-aged person. So it was a big step forward, if an
imperfect one because of the inevitable Hollywood emphasis on the
"magical" savant abilities. It was quite a struggle for that movie
to get made at all, as I chronicle in my book in detail.

Here's the thing: savant abilities do not necessarily make one "high
functioning" (a term I avoid). In fact, so-called "low functioning"
autistics (another term I avoid) often have savant abilities in
equal measure. But get this: though everyone thinks of Babbitt as
"high functioning" or something, he was so "high functioning" that
the end of the movie is him having to go back to live the rest of
his life in a mental asylum! In fact, as I explain in the book, the
real life models for Hoffman's character -- Peter Guthrie and Joe
Sullivan -- were both living outside of institutions with help from
their parents. So Babbitt was actually less "high functioning" than
the guys he was based on! That's worth noting.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #52 of 150: Peter Meuleners (pjm) Sun 18 Oct 15 15:33
    
John, email me your shipping info and Ren and I will get you a book.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #53 of 150: Steve Silberman (digaman) Sun 18 Oct 15 17:04
    
<karish>, great question. I've had a few reviews written by autistic
people, which makes me very happy. Here's one:

http://www.thinkingautismguide.com/2015/09/how-we-autistics-got-to-here-review
ing.html
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #54 of 150: mama need coffee? (pixie) Sun 18 Oct 15 19:28
    
I thought high/low functioning was more a descriptor of how
well/poorly a person could integrate with social norms, ie have
engaged conversations, relationships, jobs, etc rather than
intellectual or savant type prowess. 

Also Steve I love your point that it's moot anyway, as someone who
seem high functioning could really be struggling on the inside and
we have no clue. Everyone is unique in the kind of support they
need. I need to work on remembering this.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #55 of 150: Don Mussell (dmsml) Sun 18 Oct 15 19:34
    
"Everyone is unique in the kind of support they need"

Amen Kristin. And I might add that support can simply be acceptance,
as opposed to trying to fix things that are not broken.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #56 of 150: Paulina Borsook (loris) Sun 18 Oct 15 20:05
    

i guess i am startled that 'rainman' was the 1st mainstream depiction of
someone with autism --- because i remember when i saw it i was 'right,
austism, what else is new'.

certainly had heard of 'idiot savants' --- but now i am trying to
reconstruct how/where i could have become so blase about  the concept
overall.

younger brother of my oldest friend was clearly on the spectrum --- and i
used to hang around caltech in hs (which is not to say everyone there was on
the spectrum!) --- but now i am really wondering what i was reading/being
taught such that 'rainman' seemed like old news/a hollywood caricature.
hmm...
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #57 of 150: . (wickett) Sun 18 Oct 15 20:18
    

I was up in the middle of the night reading about "Rainman." The saga was
just too riveting and I couldn't sleep without finding out how the film 
was made despite the odds and mishaps. I was utterly captured by your 
descriptions of Hoffman's physical mirroring, Steve.

That Hoffman's portrayal is now seen as a cliche is a great indicator of
increased social understanding--as long as one knows that before "Rainman" 
there was essentially zero in the public arena.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #58 of 150: Paulina Borsook (loris) Sun 18 Oct 15 20:34
    

my point, <wickett>, is that if what steve says about 'rainman' is true (and
i have no reason to believe it isnt), what was i reading/being exposed to
prior to that movie such that it felt like old news when i saw it?

very puzzling. and no, it's not like i had ever seen before any other movies
with ppl on the spectrum in them --- just, was it in psych textbooks i had
read? living in berkeley in the 70s and being around the beginnings of
disability activism? knowing ppl who taught special ed?





 .
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #59 of 150: Virtual Sea Monkey (karish) Sun 18 Oct 15 21:04
    
The last paragraph of this review explores the area I wondered
about: whether other people find this book as useful as I do in
stimulating exploration of how my own mind works.

<http://www.aane.org/asperger_resources/articles/miscellaneous/neurotribes_revi
ew.html>
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #60 of 150: . (wickett) Mon 19 Oct 15 08:10
    

Please, tell us how the title of the book manifested.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #61 of 150: Scott Underwood (esau) Mon 19 Oct 15 08:53
    
I'll let Steve catch up with some of the comments here, but I wanted
to build on his comment:

>  They see the character of Raymond Babbitt as an autistic
 stereotype, if not THE autistic stereotype. The thing is, there WAS
 no stereotype of autistic adults when "Rain Man" was made.

I wanted to point out a great phrase that comes from the introduction
to the book, which Steve describes as a "wry saying" in the community:

        "If you've met one person with autism, you've met one person
        with autism."

I have a feeling this fits well with the answer to <wickett>'s question.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #62 of 150: John Spears (banjojohn) Mon 19 Oct 15 09:45
    
Thank you, Peter, and Renshin, for your' generosity. The Well is
truly an amazing community.

I'll send you an email, <pjm>. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #63 of 150: Renshin Bunce (renshin) Mon 19 Oct 15 11:56
    
Glad to help, John.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #64 of 150: Virtual Sea Monkey (karish) Mon 19 Oct 15 13:50
    
I did a Web search for reviews of Neurotribes. The variety of
reactions offers plenty of food for thought.

One reviewer pointed out that the man whose story was adapted for
"Rainman" isn't autistic. He has a different neurological condition
called FG Syndrome.

He is certainly neurologically idiosyncratic, and he's different
from autistic people. The reaction from an autistic reviewer makes
me wonder how tribal the neurotribes are. I also wonder about the
irony that the tribes are identified according to medical diagnoses,
even though the medical and public health professions have such
spotty records in helping autistics and even in recognizing how many
of them there are and that they're whole people.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #65 of 150: Paulina Borsook (loris) Mon 19 Oct 15 14:22
    

i think all kinds of communities have issues with qualities or issues or
syndromes that are along a spectrum; whether it's members of those
communities or outsiders trying to understand or help them

we tend to want things to be either/or, yes/nor, it's this/not that.

shades of gray and individual difference are much harder to know what to do
with.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #66 of 150: Scott Underwood (esau) Mon 19 Oct 15 15:06
    
In a larger sense, we live in an interesting time that (at least among
some) embraces diversity in sexual, gender, and racial identity. I love
that neurological behavior is yet another facet we can be aware of.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #67 of 150: Peter Meuleners (pjm) Mon 19 Oct 15 17:08
    
John's book is on the way.

Continuing to love this discussion.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #68 of 150: Kevin Wheeler (krome) Mon 19 Oct 15 17:49
    
I see karish's point, how would one become part of a tribe without
expressing a complete desire to be in it.  But I am in a tribe of
misfits without ever asking. Couple weeks ago, at the HEB in my poor
part of town, ran into an couple with baby in the candy aisle
wondering about chocolate. As something of a specialist,  I
volunteer that the best they get here is Snickers.  She says, ' but,
we've been eating Snickers for 2 weeks'. I say, 'they have
everything : chocolate, peanut fiber and whatever nougat is'.

As I trundle off, I hear him say something about '...old punk
rocker'.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #69 of 150: Steve Silberman (digaman) Mon 19 Oct 15 20:58
    
<pixie> wrote:

> Everyone is unique in the kind of support they
need. I need to work on remembering this.

So do we all. Beautifully said.

<loris> wrote:

> i guess i am startled that 'rainman' was the 1st mainstream
depiction of someone with autism --- because i remember when i saw
it i was 'right, austism, what else is new'.

You left out an important word: "adult." Rain Man was the first 
mainstream depiction of an autistic adult, rather than an autistic
child. Depictions of autistic children go back to the 18th Century
and up through 20th Century stereotypes like Bruno Bettelheim's
"Joey the Mechanical Boy." But the diagnosis was *just becoming
available* to adults. "The spectrum" did not exist outside the minds
of Lorna Wing and her colleagues. The same year that Rain Man came
out, autism researcher Ed Ritvo publishing a paper theorizing that
autistic children could grow into autistic adulthood, and even have
sex and stuff. This was highly controversial at the time. Meanwhile,
Rain Man was an international multi-Oscar winning blockbuster.

So, consider: there was no spectrum. Temple Grandin was unknown
outside of autism parenting conferences. Autism was a rare form of
childhood psychosis. Then Raymond Babbitt wanted his syrup before
his pancakes, and no one would not know what autism in adulthood
looks like again.

<karish>, you found my least favorite review of the book. I will not
point to it. I'll just say this. He totally ignores the fact that I
show that Kim Peek was NOT the model for Raymond Babbitt. And then I
show the two real autistic guys -- Peter Guthrie and Joe Sullivan --
that Hoffman based his character on. He portrays that chapter as me
misrepresenting Peek as autistic, rather than presenting him as
having very idiosyncratic brain structure:

"One night in 1984, at an Arc conference in Arlington, Texas, Morrow
met a man who had one of the most unusual minds on earth. The bones
of
Kim Peek’s cranium had failed to fuse properly in the womb, so at
birth, part of his cortical tissue protruded through a
baseball-sized blister at the back of his head. His brain also
lacked a corpus callosum, the thick bundle of white matter that
usually coordinates communication between the left and right
hemispheres. When he was nine months old, a neurologist rushing off
to a golf game told his parents that Peek was hopelessly retarded,
would never amount to anything, and belonged in an institution. But
his father and mother, Fran and Jeanne, refused to abandon him,
vowing to care for him at home as best they could."

Does that sound like autism to you? It sounds like a totally morphed
brain to me. Then I go on to discuss the autistic models for Babbitt
in depth.

One of the most interesting things about that chapter, for me, is
the fact that neither of the two real-life models for Rain Man lived
in institutions, while Raymond Babbitt did; in fact, at the end of
the movie, he's judged incapable of surviving outside one --
contrary to screenwriter Barry Morrow's initial script. Babbitt was
imprisoned by old beliefs that were about to be challenged by the
broadening of the spectrum to include adults.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #70 of 150: Paulina Borsook (loris) Mon 19 Oct 15 21:20
    

thanx for the clarification about 'rainman's' singular depiction of -adult-
autism.

i talked today with the person i actually saw 'rain man' with back in
berkeley days --- and asked him 'why did that seem familiar to us?" (we met
in a psycholinguistics seminar at berkeley, and shared Too Much Immersion in
the subjunctive together). he couldnt remember either (as an aside, he very
much enjoyed listening to one of yr recent radio interviews --- dont know
which one).
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #71 of 150: John Spears (banjojohn) Tue 20 Oct 15 09:39
    
<67> Thank you, Peter. I can't remember when I've looked forward to
a book so much, and I'm a lifelong bookworm.

Rain Man was released in December of 1988, so the movie came out 
three years after I first sought out help from a psychologist for
with what I perceived as a lifelong "problem". She assured me I was
normal, but would probably be happier working in Knoxville than for
my parents in our small town, at 25. I'm not sure when I first read
about Asperger's Syndrome, but I knew immediately that I was on this
"spectrum". Every word I've read since then has reinforced my
belief.

On the other hand, my friend who exhibits more symptoms than I do,
isn't willing to consider or accept that he may be on the spectrum.
He has pretty much destroyed his life: losing a million dollar
inheritance in stock market gambles, and losing his family, as he
has an eleven year old son he has not seen in 8 years. 

I can work with him because I know how to keep from over stimulating
him under pressure. 

It's amazing, to me, that any adults my age w/Asperger's have
managed to have successful lives, with careers and families. They
must have had support, which had to be hard to find for those with
an unrecognized condition. As a child, I felt as if I was living in
a bubble, and it was quite frustrating.  



    
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #72 of 150: (fom) Tue 20 Oct 15 18:08
    
     
 <loris> wrote:

  > i guess i am startled that 'rainman' was the 1st mainstream
  depiction of someone with autism --- because i remember when i saw
  it i was 'right, austism, what else is new'.

Paulina, do you think you might have known some autistic people in college 
and just accepted them as autistic? I was in college 1959 to 1965 and 
there were definitely some autistic graduate students, if not college 
students, in my circles. They were super-brilliant geniuses who were 
barely able to communicate on a regular everyday level. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #73 of 150: Paulina Borsook (loris) Tue 20 Oct 15 18:42
    

it's puzzling.

as i mentioned, i used to slink around caltech when i was in HS (1967
onward) and so had to have run into some folks on the spectrum. of course
-then- i wouldnt have had the language to identify what i might have been
encountering; it could be when i got into undergrad psych classes in the
1970s, i might have had an 'aha!' moment of 'oh yeah, that was what i had
seen sometimes at caltech/with the younger brother of a friend/etc etc!'. or
maybe even at times, once i had crude markers for what we call being on the
spectrum, i had a mental category of when, in my berkeley life in the 70s
and 80s, i ran into someone who fit.

and once i had those categories, when, say, was knocking around STEM circles
for work --- i probably had 'i cant define it but i know it when i see it'
moments.

obviously the people i was running into were those with lives and careers
and must have had parental + educational support to lead lives that worked
for them.

there are ppl i have been involved with, whether as friends or bedmates,
that in retrospect have to have been on the spectrum --- as warm and as kind
as they were, they had a certain lack of being able to tell where other ppl
are coming from --- and were, good, say at chess.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #74 of 150: Virtual Sea Monkey (karish) Tue 20 Oct 15 21:45
    
<diga>, I'm sorry that I poked at a sore spot.

I'm fascinated by the notion of tribes that one joins with a note
from one's doctor. I've read about advocacy over the needs of
autistic people and for the respect that they're denied by the
powerful organizations that identify them as problems for their
respective parents. How do autistic people see themselves as a
culture?
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #75 of 150: Don Mussell (dmsml) Tue 20 Oct 15 23:12
    
I sure don't see myself as part of a culture or a tribe in literal
terms. Being a spectrum of behaviors and abilities should make it
hard to lump folks together in some category or another, but people
like to compartmentalize things. but that does not mean it is
applicable in all cases. 
    I've never considered myself as part of a "culture", but perhaps
instead feel I share some common interests with some people I know.
Being on the spectrum is just what is there, and I've learned to
cope with the limitations and misunderstandings that come with the
territory. Being in a crowd is too overstimulating anyway, so the
idea of being a part of some larger grouping is something I'm not
inclined to do. 
    
  

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