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Steve Silberman, Neurotribes
permalink #76 of 172: Jon Lebkowsky (jonl) Wed 21 Oct 15 05:00
permalink #76 of 172: 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?
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Steve Silberman, Neurotribes
permalink #77 of 172: Steve Silberman (digaman) Wed 21 Oct 15 13:22
permalink #77 of 172: 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.
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Steve Silberman, Neurotribes
permalink #78 of 172: Craig Maudlin (clm) Wed 21 Oct 15 13:27
permalink #78 of 172: 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>
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Steve Silberman, Neurotribes
permalink #79 of 172: Eric Rawlins (woodman) Wed 21 Oct 15 13:57
permalink #79 of 172: Eric Rawlins (woodman) Wed 21 Oct 15 13:57
Always loved that scene.
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Steve Silberman, Neurotribes
permalink #80 of 172: Paulina Borsook (loris) Wed 21 Oct 15 14:15
permalink #80 of 172: 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'.
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Steve Silberman, Neurotribes
permalink #81 of 172: mama need coffee? (pixie) Wed 21 Oct 15 14:28
permalink #81 of 172: 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.
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Steve Silberman, Neurotribes
permalink #82 of 172: Steve Silberman (digaman) Wed 21 Oct 15 17:29
permalink #82 of 172: 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.
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Steve Silberman, Neurotribes
permalink #83 of 172: Steve Silberman (digaman) Wed 21 Oct 15 17:30
permalink #83 of 172: 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.
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Steve Silberman, Neurotribes
permalink #84 of 172: Lena via lendie (lendie) Wed 21 Oct 15 20:31
permalink #84 of 172: 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.
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Steve Silberman, Neurotribes
permalink #85 of 172: Evan Morris (lexicon) Thu 22 Oct 15 00:39
permalink #85 of 172: Evan Morris (lexicon) Thu 22 Oct 15 00:39
<scribbled by lexicon Thu 22 Oct 15 00:43>
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Steve Silberman, Neurotribes
permalink #86 of 172: lexicon (lexicon) Thu 22 Oct 15 00:44
permalink #86 of 172: 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.
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Steve Silberman, Neurotribes
permalink #87 of 172: Lexicon (lexicon) Thu 22 Oct 15 00:53
permalink #87 of 172: 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.
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Steve Silberman, Neurotribes
permalink #88 of 172: Steve Silberman (digaman) Thu 22 Oct 15 08:16
permalink #88 of 172: 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!
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Steve Silberman, Neurotribes
permalink #89 of 172: Ruth Bernstein (ruthb) Thu 22 Oct 15 09:46
permalink #89 of 172: 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.
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Steve Silberman, Neurotribes
permalink #90 of 172: Scott Underwood (esau) Thu 22 Oct 15 10:26
permalink #90 of 172: 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.)
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Steve Silberman, Neurotribes
permalink #91 of 172: Steve Silberman (digaman) Thu 22 Oct 15 10:50
permalink #91 of 172: 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
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Steve Silberman, Neurotribes
permalink #92 of 172: Scott Underwood (esau) Thu 22 Oct 15 11:00
permalink #92 of 172: 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!
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Steve Silberman, Neurotribes
permalink #93 of 172: Steve Silberman (digaman) Thu 22 Oct 15 11:24
permalink #93 of 172: 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
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Steve Silberman, Neurotribes
permalink #94 of 172: Gail Williams (gail) Thu 22 Oct 15 11:32
permalink #94 of 172: 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.
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Steve Silberman, Neurotribes
permalink #95 of 172: mama need coffee? (pixie) Thu 22 Oct 15 11:34
permalink #95 of 172: mama need coffee? (pixie) Thu 22 Oct 15 11:34
Luck!!! It really is such a fantastic book and deserves ALL THE AWARDS.
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Steve Silberman, Neurotribes
permalink #96 of 172: Ari Davidow (ari) Thu 22 Oct 15 11:34
permalink #96 of 172: Ari Davidow (ari) Thu 22 Oct 15 11:34
Best of luck Steve!
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Steve Silberman, Neurotribes
permalink #97 of 172: Renshin Bunce (renshin) Thu 22 Oct 15 11:59
permalink #97 of 172: Renshin Bunce (renshin) Thu 22 Oct 15 11:59
Luck luck luck!
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Steve Silberman, Neurotribes
permalink #98 of 172: Evan Morris (lexicon) Thu 22 Oct 15 12:01
permalink #98 of 172: 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.
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Steve Silberman, Neurotribes
permalink #99 of 172: Renshin Bunce (renshin) Thu 22 Oct 15 12:33
permalink #99 of 172: Renshin Bunce (renshin) Thu 22 Oct 15 12:33
Actually I'll amend #97 to Skill skill skill!
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Steve Silberman, Neurotribes
permalink #100 of 172: Cliff Dweller (robinsline) Thu 22 Oct 15 13:07
permalink #100 of 172: Cliff Dweller (robinsline) Thu 22 Oct 15 13:07
I mourned the demise of the Little Professor in Columbus.
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