inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #76 of 150: Jon Lebkowsky (jonl) Wed 21 Oct 15 05:00
    
Just catching up on this conversation, at the tail end of a bit of
traveling... 

I'm thinking about the treatment of children on the spectrum in
schools. A close friend worked with "special needs" children in
Austin schools, and found that some teachers prioritized social
control of children with autism and other, similar differences above
sensitivity and acknowledgement - almost to the point of cruelty. Is
there any movement to upgrade the understanding of autism in public
schools, so that the "special needs" programs are more nurturing?
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #77 of 150: Steve Silberman (digaman) Wed 21 Oct 15 13:22
    
<karish> wrote, "How do autistic people see themselves as a
culture?"

That's the subject of a whole chapter in my book called "In Autistic
Space." I'd rather refer readers to that chapter than summarize it
here, because the birth of "autistic culture" is a completely
fascinating story and I don't want to turn it into soundbites.

<dmsml> wrote, "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."

Well, it's not just that. There are several approaches and insights
that are applicable across the entire spectrum. For example, both
chatty Aspies and non-verbal "Kanner kids" may experience sensory
sensitivities that interfere with their inability to function.
Discovering and addressing those sensory sensitivities may help the
person get along better in daily life -- whether it's a kid wearing
the itchy sweater his grandmother loving made for him, or a
programmer in a billion-dollar company bothered by the bank of
fluorescent lights and constant chatter in the hip, open-plan
office. See Barry Prizant's superb new book "Uniquely Human"
(http://books.simonandschuster.com/Uniquely-Human/Barry-M-Prizant/9781476776231
) for ways that parents and clinicians can use insights provided by autistic adults to enhance their care taking abilities and their experiences of interacting with people on the spectrum of all ages.

<loris>, I'm not at all surprised that you kept running into people
on the spectrum and developed your own mental category to which they
belonged. In a sense, my book is a history of *the whole medical
establishment* going through that process, because these people were
"hiding" in plain sight. I may have earlier referred to a book by a
marital counselor named Jean Hollands called "Silicon Syndrome," a
sort of self-help book for women in relationships with what she
called "sci-tech men," written in the 1980s. She could have swapped
out the term "Silicon Syndrome" for the term "Asperger syndrome"
when that diagnosis was introduced years later without changing
another word in the text.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #78 of 150: Craig Maudlin (clm) Wed 21 Oct 15 13:27
    
Re: "Rain Main"

There's also this fleeting depiction from the slightly earlier (1983)
movie "WarGames"

<https://www.youtube.com/watch?v=GfJJk7i0NTk>
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #79 of 150: Eric Rawlins (woodman) Wed 21 Oct 15 13:57
    
Always loved that scene.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #80 of 150: Paulina Borsook (loris) Wed 21 Oct 15 14:15
    
ah,  i remember 'silicon syndrome' --- and my feeling of course was
'yeah yeah i know all that'.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #81 of 150: mama need coffee? (pixie) Wed 21 Oct 15 14:28
    
I just read the Rainman chapter last night and I loved loved LOVED
the quote from Morrow about how he didn't befriend Bill just as a
good deed – he got something back from him as well. It wasn't a
one-way relationship. I feel like too often the story around people
with mental or intellectual disabilities (and I use that word
reluctantly) is one of pity or sympathy, which is better than
ostracizing or outcasting, but is still one of inequity. 

I also loved hearing about how Hoffman connected so deeply to the
role and really wanted to understand what it was like to be on the
inside of autism, not just what it looks like from the outside.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #82 of 150: Steve Silberman (digaman) Wed 21 Oct 15 17:29
    
Holy moly, I didn't remember that scene from "War Games." (My eyes
were probably glued to Matthew Broderick.) It's pretty hilarious,
albeit Aspie stereotypes turned up to 11.

But, of course, there was no explicit connection to autism. It's
just a (quite prescient, I will say) portrayal of geeks. The
exchange where Jim reminds Malvin that he would tell him when he was
being rude was pretty genius.

So, yes: Aspies existed long before the diagnosis did. That's one of
the points of my book. Another memorable portrayal of a potential
Aspie… from 130 years earlier? "Bartleby the Scrivener."

Asperger was smart enough in 1943 to know that autistic adults were
already stock figures in pop culture. But it took psychiatry until
the 1980s to come up with a name for them, and a diagnosis that
would provide them access to support services.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #83 of 150: Steve Silberman (digaman) Wed 21 Oct 15 17:30
    
Thanks, <pixie>, totally. It was really Hoffman's commitment to that
character, as I describe in the book, that brought it into the
mainstream.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #84 of 150: Lena via lendie (lendie) Wed 21 Oct 15 20:31
    

Errol Morris' movie _Fast, Cheap and Out of Control_ seems like a great
overview of da spectrum to me.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #85 of 150: Evan Morris (lexicon) Thu 22 Oct 15 00:39
    <scribbled by lexicon Thu 22 Oct 15 00:43>
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #86 of 150: lexicon (lexicon) Thu 22 Oct 15 00:44
    
Haven't read the book yet (I just bought it), but it looks
fascinating.

I was actually diagnosed as simply "autistic" by a psychiatrist at
age 19 (1969), but my parents apparently didn't believe him (autism
at that time in the popular media meaning nonverbal kids in
institutions) and never told me. Fast-forward to 2005 (age 55), my
wife (science writer) suggested I might have Asperger's, and I was
diagnosed as such by a psychiatrist.

The diagnosis explained a great deal about my life to me, but I'm
glad my parents never told me. I doubt that I would have been able
to do what I've done. I was lucky to have parents & family who gave
me unconditional love and let a lot of nonsense slide.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #87 of 150: Lexicon (lexicon) Thu 22 Oct 15 00:53
    
The Bartleby thing is funny. I worked as a legal proofreader for a
Wall St. law firm for almost 20 yrs. I was very good at it, the
money was good, and my bosses liked me because I was very
cooperative (come in early, stay late, etc.). But only within the
routines of the job; if they asked me to go proofread something at a
client's office or deliver a package across town, I would beg off
with variations on "I really don't want to do that." I always got
away with it because I was a valued employee. I also let it be known
that I was not fond of answering the telephones that rang
incessantly.

It wasn't until about year 15 of my tenure there that someone
suggested I read Bartleby the Scrivener, so I did. It was an odd
moment. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #88 of 150: Steve Silberman (digaman) Thu 22 Oct 15 08:16
    
Heh, I bet. Thanks for that story, <lexicon>.

> (autism
at that time in the popular media meaning nonverbal kids in
institutions)

Not just in the popular media. *In most clinicians' conception of
autism,* which got narrower as time went on, until Lorna Wing
overturned it all with the concept of the spectrum. You're a living
example of how a kid diagnosed as "autistic" as a young age could be
diagnosed in adulthood as having Asperger syndrome.

And I will say: You had a job that quietly made accommodations for
you (even though they didn't technically know why) and a wife who
supported you. You were doing very well. Someone who was doing less
well may have benefited from knowing their diagnosis, though in
1969, the prognosis was certainly bleak. Your parents were pioneers!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #89 of 150: Ruth Bernstein (ruthb) Thu 22 Oct 15 09:46
    
That is really interesting--my brother had/has many of the markers
that made people think little boys are on the spectrum, and my
parents did exactly the same thing. I think none of us (probably
including my parents) realized how much privilege they were using to
do this (we are not poor, we are Jewish, we didn't care about
society's approval of our family) but it occurred to me all the time
that if my brother were not a highly intelligent white boy with a
lot of resources, he would be in much more trouble than he already
was.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #90 of 150: Scott Underwood (esau) Thu 22 Oct 15 10:26
    
Steve, maybe we can move from the most famous fictional depiction of
autism to the spectrum's greatest real-life model, who first appeard to
the general public a few years after Rain Man: Temple Grandin. Her name
has come up a couple times in our conversation here, but maybe we can
discuss her contribution more closely.

Oliver Sacks's excellent profile of Grandin, "An Anthropologist on Mars,"
caused another moment of autism awareness for me, and probably others
as well: in addition to those people who had trouble navigating the
neuronormative world -- whether or not they also displayed Rain Man-like
mental gifts -- here was an accomplished and industrious person who had
not only made great contributions in her field, but had credited her
abilities directly to her autism.

I enjoyed your profile of her as a beacon of hope for the community.
Did you meet with her? (I'm sorry if I breezed past the part where the
answer to that sits in the book.)
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #91 of 150: Steve Silberman (digaman) Thu 22 Oct 15 10:50
    
<esau>, I did meet with Temple, yes, though our interview for the
book was done on the phone. The first time I met Temple, I did
EVERYTHING WRONG. I saw her checking into a hotel where we were both
staying to talk to the Asperger/Autism Association of New England
and I idiotically came up behind her, surprising her, and said "HI
TEMPLE!!!" She averted her eyes and walked away without saying
anything. I deserved that. But half an hour later, I was introduced
to her by a mutual friend as the author of "The Geek Syndrome," and
she told me she loved the article (which, I must say, had obviously
influenced the talk she gave that morning) and was excited to talk
to me for the book.

Temple Grandin is of enormous historical importance because she was
one of the very first adults to identify as autistic in public. How
new was this? What everyone forgets, which I point out in my book,
was that when her autobiography "Emergence" came out in 1986, it was
billed by autism parent/expert Bernie Rimland as the first book by a
"recovered" autistic person. "Recovered?!" Well, obviously --
because a former autistic child could never have become a professor
of animal science and leading industrial designer, so she had to
have been cured, according to Rimland, who launched the Defeat
Autism Now! movement to cure autism with dietary interventions,
chelation, and other alternative treatments.

Temple quickly figured out, however, that she was not only still
autistic, but that her autistic traits were crucial for her work. In
other words, as I put it in NeuroTribes, "not all features of
atypical human operating systems are bugs." Temple was too "inside"
the medical model to launch an autistic revolution -- it took an
outsider named Jim Sinclair to do that, as I explain in my book --
but she definitely helped lay the groundwork for what we now call
the neurodiversity paradigm.

I had a wonderful (if glitchy) Skype interview with Temple not long
ago that drew on our fond memories of Oliver Sacks:

http://meaningoflife.tv/videos/32212
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #92 of 150: Scott Underwood (esau) Thu 22 Oct 15 11:00
    
Oh, that's terrific -- I've never seen her speak casually before.

Jim Sinclair is another interesting story -- diversity in at least
two spectra!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #93 of 150: Steve Silberman (digaman) Thu 22 Oct 15 11:24
    
For sure.

By the way, I was on BBC Radio 4 today reading from the book on the
occasion of its being shortlisted for the Samuel Johnson Prize. The
ceremony announcing the winner is Nov. 2. Wish me luck.  :)

http://www.bbc.co.uk/programmes/p035wzx7
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #94 of 150: Gail Williams (gail) Thu 22 Oct 15 11:32
    
Wow.  Luck indeed.  

So proud of all you've done.  Pride in a Well-tribal way, of course.
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #95 of 150: mama need coffee? (pixie) Thu 22 Oct 15 11:34
    
Luck!!! It really is such a fantastic book and deserves ALL THE
AWARDS. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #96 of 150: Ari Davidow (ari) Thu 22 Oct 15 11:34
    
Best of luck Steve!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #97 of 150: Renshin Bunce (renshin) Thu 22 Oct 15 11:59
    
Luck luck luck!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #98 of 150: Evan Morris (lexicon) Thu 22 Oct 15 12:01
    
re #88, it helped that I was hyperlexical (my parents were
lexicographers, fwiw). Weirdly, in my 20s I managed a store in the
franchised Little Professor bookstore chain. 
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #99 of 150: Renshin Bunce (renshin) Thu 22 Oct 15 12:33
    
Actually I'll amend #97 to

Skill skill skill!
  
inkwell.vue.485 : Steve Silberman, Neurotribes
permalink #100 of 150: Cliff Dweller (robinsline) Thu 22 Oct 15 13:07
    
I mourned the demise of the Little Professor in Columbus.
  

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