The Dawn of Autistic Space - Excerpt from NeuroTribes

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alex
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08 Sep 2016, 7:19 am


This is an excerpt of Steve Silberman's award-winning book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which was recently published in paperback. This section of a chapter called “In Autistic Space” describes how adults on the spectrum became early adopters of the Internet, using it to share stories of their lives, build community, and create the first autistic-run spaces, both online and offline. We published an interview with Steve when the book first came out.

Jim Sinclair became one of the first openly autistic adults online, joining a digital mailing list run out of St. John’s University in New York frequented ...



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08 Sep 2016, 8:13 am

I was reading that section 2 days ago, Mr. Silberman is a good ally and writer.

It really does show how far we've come, from a table to full blown events on multiple continents, this site, and retreat centers like Ocate.


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08 Sep 2016, 10:02 am

Among all the accounts of autism, 'Neurotribes' is certainly the most lucid to date. Steve Silberman writes with a directness and honesty that is similar to Tony Atwood's; and, being gay, he has personal experience of discrimination, of what it is to be seen as 'Other'.

One of the most memorable parts of the book are the chapters on Hans Asperger and Leo Kanner. Asperger comes across as the most intuitive, empathetic and altruistic of the two, while Kanner seems to have taken a somewhat unsubtle, black-and-white approach, often fuelled by personal ambition. One can't help thinking that the lives of people with autism would have been greatly improved had Asperger's 'spectrum' theory been introduced earlier. History can be very cruel.



Last edited by Hyperborean on 08 Sep 2016, 2:42 pm, edited 2 times in total.

higgie
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08 Sep 2016, 11:20 am

I have just finished reading this book and I recommend it to everybody on the autism spectrum. Although the subject matter is scientific, the style is not the least bit dry or "textbook." It is immensely readable and sometimes even has the pace of a thriller. The early days of autism study make for a sad story populated with countless misunderstood children and adults, but the progress made to date offers great hope. It's a wonderful book, and I don't use that word idly. So high-tail it over to your library and check it out, everybody!

Sincerely,

"Higgie"



stevesilberman
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08 Sep 2016, 11:47 am

Thanks, folks. I really appreciate it!



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08 Sep 2016, 11:53 am

Thank you, Steve! We stand to benefit much more from your work than you do.



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08 Sep 2016, 1:53 pm

Thanks Steve. I'm new to the site. Learning a lot. It all makes more sense now. Will definitely try to get book. Hi to anyone else on this not so lonely planet.



higgie
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08 Sep 2016, 2:15 pm

stevesilberman wrote:
Thanks, folks. I really appreciate it!


It's we who thank you, Mr. Silberman!



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08 Sep 2016, 3:39 pm

Yes indeed, Thank you Steve Silberman.,

It felt a bit of a homecoming when I read "Neurotribes" this year.

My tribe.



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08 Sep 2016, 3:53 pm

Another thank you.
I know you have taken a lot of heat and criticism for bieng an elitist and at this time there seems to be a backlash against Neurodiversity here at Wrong Planet and elsewhere. My hope that in 10 or 20 years your work will be understood to be the seminal work it is and that Autism as mostly or all about impairments will seem as antiquated as the idea that gays should not be teachers because they are going to poison the kids minds.

I am very straight and around your age and it seems the ND/Autism rights movement today is where the gay rights movement was when we were teens in the 1970's. Getting some positive press(you have had a big role in this) but still a big stigma about it.

As I am straight I will not pretend to understand what it was like for you back then. I can say when I was bullied it was not because I was autistic because as you so well documented nobody would recognize somebody like me as Autistic, but because different equaled gay so that is who they thought I was.

But look at where the LBGTQ community is today!! While no two situations are alike your communities should serve both as an inspiration and as a teacher for ours.


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08 Sep 2016, 6:22 pm

Well, I don't know. I am, of course, autistic but managed to stay under the radar through all those exciting times.
This book offers me no hope at all - I was fifty two when I learned of autism and fifty seven when the diagnosis became official. I live in a world where there are a few percent of people in my age group probably autistic, but vanishingly few of them know it. I know from experience that learning at a late age is difficult, I work in an organisation where difference is accepted and autism doesn't exist, I am downtrodden, ignored and forgotten. And, perennially, left out. Through the period your work highlights the glittering stars of, millions like me lived, worked and died. Yes, I'm glad the world is learning. Just sorry it's too late for me.



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08 Sep 2016, 7:00 pm

higgie wrote:
I have just finished reading this book and I recommend it to everybody on the autism spectrum. Although the subject matter is scientific, the style is not the least bit dry or "textbook." It is immensely readable and sometimes even has the pace of a thriller. The early days of autism study make for a sad story populated with countless misunderstood children and adults, but the progress made to date offers great hope. It's a wonderful book, and I don't use that word idly. So high-tail it over to your library and check it out, everybody!

Sincerely,

"Higgie"

[emphasis mine]

Sadly my library lacks enough copies for me to get my hands on it anytime before likely July of 2018. -_-

Maybe I could acquire the Puyallup Library copy...


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09 Sep 2016, 2:43 am

peterd wrote:
Well, I don't know. I am, of course, autistic but managed to stay under the radar through all those exciting times.
This book offers me no hope at all - I was fifty two when I learned of autism and fifty seven when the diagnosis became official. I live in a world where there are a few percent of people in my age group probably autistic, but vanishingly few of them know it. I know from experience that learning at a late age is difficult, I work in an organisation where difference is accepted and autism doesn't exist, I am downtrodden, ignored and forgotten. And, perennially, left out. Through the period your work highlights the glittering stars of, millions like me lived, worked and died. Yes, I'm glad the world is learning. Just sorry it's too late for me.


This is a typical misrepresentation of the book. It details how most autistics were misdiagnosed, institutionalized, tortured, sadated, used as guniea pigs for drug experiments, systematically killed as well as describing "low functioning" autistics. We like most super late diagnosed would have died not knowing who we really are without some of these "glittering" people.


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09 Sep 2016, 4:53 am

ASPartOfMe wrote:
peterd wrote:
Well, I don't know. I am, of course, autistic but managed to stay under the radar through all those exciting times.
This book offers me no hope at all - I was fifty two when I learned of autism and fifty seven when the diagnosis became official. I live in a world where there are a few percent of people in my age group probably autistic, but vanishingly few of them know it. I know from experience that learning at a late age is difficult, I work in an organisation where difference is accepted and autism doesn't exist, I am downtrodden, ignored and forgotten. And, perennially, left out. Through the period your work highlights the glittering stars of, millions like me lived, worked and died. Yes, I'm glad the world is learning. Just sorry it's too late for me.


This is a typical misrepresentation of the book. It details how most autistics were misdiagnosed, institutionalized, tortured, sadated, used as guniea pigs for drug experiments, systematically killed as well as describing "low functioning" autistics. We like most super late diagnosed would have died not knowing who we really are without some of these "glittering" people.


You make a good point about the book, but peterd's perspective is perfectly valid too. Most information, support and funding is currently directed towards children with autism, yet very little, and in many cases none at all, is provided for those who were diagnosed later in life, and who are often struggling in isolation. Of course, it's right that children get support, but the experience of older people on the spectrum, and its value in helping those who are younger, should also be taken into account. Society has a rather sinister fixation with children in general, not just those with autism.



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09 Sep 2016, 11:30 am

Besides dying knowing who I am I do not not expect much if any tangable benifit from other people from the neurodiversity movement. In the UK they are making a concerted effort to understand and help adult autistics. In the USA tentative efforts are beginning for YOUNG ADULTS because they are seen as potential productive employees and the wave of kids diagnosed because of the expanding criteria are or becoming young adults frightening parents who give to Autism "charities" and research organizations. Either way it will take a generation for the knowlege to be aquired, spread, people to figure out what to do the knowledge and the inevitable resistance overcome. Overcoming resistance will be the hardest thing to do and where the whole thing can come undone.

All we can do is try the best we can to move things forward for future generations. I am glad the most of the people in the early to mid 1940's decided to pay it forward and not say wow I have really bad luck to be born at a time when I am going to be drafted and lose prime years of my life if not my life, get shot at, have my city leveled etc.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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09 Sep 2016, 11:47 am

For all the talk of there being a community, I've never experienced it or seen any evidence of one actually existing. An internet community does not equivalate to a real life one, I don't feel like it comparable to the real gay or deaf communities.