Thursday, May 9, 2013

A sample of Steve Silberman's neurodiversity book?

For the past few years or so, Wired magazine journalist Steve Silberman has been writing a book about autism and neurodiversity. His claim to fame in the field of autism is a magazine article he published about eleven years ago or so with the somewhat offensive title The Geek Syndrome in which he spoke of the rise of autism in the silicon valley and at the very least implied that math, science and computer genes were the culprit.  I've already written about the fact that according to State Regional Center data, the rise of autism in the Silicon Valley has been no greater or less than the rise in diagnoses in other parts of the state.  This magazine article was apparently so popular that Silberman has decided to write a much longer book length manuscript with neurodiversity being one of the main themes.  I've had dialogues with Mr. Silberman, worried that he might trivialize my horrible disability.  He explained to me that was not his intent and convinced me not to judge his book by its figurative cover.  

I've awaited publication of Silberman's book with bated breath.  For some reason, it's taken him a rather long time to write it in spite of the fact he apparently has a publishing contract and has undoubtedly been paid an advance.  Originally, it was supposed to be published in 2013 but apparently it has been postponed until 2014.  Judging from the company he keeps with Ari Ne'eman and other sterling individuals from the ND movement, I'm utterly curious as to what he'll write.

Recently Silberman authored a piece in wired magazine nearly a month ago which apparently I regrettably missed. Had I known about it, I would have written a blog about it sooner. Of course, there's the old saying better late than never.

If Silberman's future book is anything like this article my worrying certainly wasn't for naught.

I'd like to dissect certain talking points of the author.

First he quotes the person who coined the word 'neurodiversity' Judith Singer:
  By autistic standards, the “normal” human brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail. “I was interested in the liberatory, activist aspects of it,” Singer explained to journalist Andrew Solomon in 2008, “to do for neurologically different people what feminism and gay rights had done for their constituencies.”

My autism distracts me and impairs my concentration far beyond what a nonhandicapped person is capable of.  I suspect it's the same in a lot of other people.  I wish I could have improved social life and I suspect wanting to have friends and romance is not being obsessively social.  Again, there is the offensive comparisons between women's and gay rights, when these people are not disabled and autistic people are.

One reason that the vast majority of autistic adults are chronically unemployed or underemployed, consigned to make-work jobs like assembling keychains in sheltered workshops, is because HR departments are hesitant to hire workers who look, act, or communicate in non-neurotypical ways—say, by using a keyboard and text-to-speech software to express themselves, rather than by chattering around the water cooler.

The reason the vast majority of autistics are unemployed are underemployed is because they have disabilities that impairs them from learning marketable skills such as plumbing, computer programming, going to law school etc.  Also, because they have loud voices and poor social skills which most people find offensive.  This is certainly true of people on the spectrum perfectly capable of speaking who have no need for keyboards or text to speech software, which certainly includes most members of the ND movement.  I'm curious as to what autistic persons Silberman has even met besides Ari Ne'eman and Alex Plank and John Robison who are certainly outliers.

 One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn’t mean that it’s broken.

I suppose this statement is true if the computer is a Macintosh or is running Linux.  But a PC is certainly broken if there is a blue screen of death, there are not enough memory chips or the hard drive crashes.  This is a better analogy, in my opinion, for autism.  A Mac or a Linux computer is certainly functional, but a person with autism is impaired.

Silberman then goes on to give examples of persons with divergent thinking who went on to make great inventions or societal contributions.  All of these individuals had dyslexia, not autism, which apparently is the subject of Silberman's forthcoming book.  I suppose he could have mentioned Temple Grandin, but examples such as these are the exceptions and not the rule.

I was intrigued to find out that Ari Ne'eman and ASAN are working with the department of labor to develop jobs for autistic people.  It's odd that as far as I can tell ASAN has not written about this on their web page or anywhere else.  As I've repeatedly said, Ne'eman has never worked a day in his life or filled out a job application or had a job interview.  I suspect the same is true for the bulk of graduate students and post doctoral fellows who populate ASAN's memberships and executive board.  What the hell do Scott Robertson or Steve Kapp or Sarah Prippas know about employment?  I will have to learn more about this if it is true and possibly write a blog post about it in the future.

Glad I encountered this article.  I am even more piqued to read a copy of Silberman's book, possibly an advanced copy if I'm ever so fortunate.  Sounds like this book if it is ever published must be a doozy.  

8 comments:

Roger Kulp said...

Ne'eman clearly comes from a family with money and influence.There is no way an "autistic" could have set up an organization as influential,that can get into government and business,like ASAN has,before the age of twenty five.The articles,and neurodiversity as a whole don't mention that so many autistics also have to deal with multiple learning disabilities,like I have,including those involving math,as well as serious cognitive problems,and inability to organize thought.The attention to detail Silberman talks about is rarely in areas that can be applied to a career.Most of us consider ourselves lucky if we can improve to the point where we can remember to pay the bills every month,and all the other simple basics of living from day to day without assistance.

Not a one of these people have ever had to face or legally fight the possibility of being put in an
institution or group home,like I have,either.Even when you discount all the medical issues,and regressions,this is an entirely different condition.

Socrates said...

Can I have my Special Talent please? It's just that I'm absolutely f-ckin' sick of being stuck in the house for years on end, reliant on welfare... ...

Anonymous said...

Dear All, I don't pay much attention to Mr. Ne'eman, and ASAN, but I agree that he shouldn't be in a position to speak for everybody on the Autism spectrum--he just isn't typical--too much money in the family, and he seems to be hardly disabled by his condition at all. I don't wish him ill, either, but I just hope he remembers that others may not be doing as well as he is. I also know about the welfare issue and all, which we all think we're going to be on "for just a few minutes" until we get on our feet. I have a feeling that "they", whichever "they" it is, want to get us on there and keep us there, so they can control us. I think it's unfair for some of the Republicans to blame Obama for all of it, as this has been going on, in one way or another, for a long time. I think there are those who enjoy controlling others.

usethebrains godgiveyou said...

On sfari, (Simons Foundation Autism Research Initiative--or Stealth Autism Speaks, only with more class) there was a study performed by Marsha Mailick that was alluded to here: http://sfari.org/news-and-opinion/news/2013/long-term-studies-track-how-autism-changes-with-age To quote;" As adults, Mailick has found, many people with autism are able to hold down jobs, but few have opportunities for career advancement. Although many adults with the disorder have a stable place to live, only about five percent live completely independently."

I was a little depressed after reading this. It isn't the feel good autism of the teens, but the disability autism I learned about 15 years ago when my son was young. I remember reading then that only 5% of autistics would live independently then.

If my son was blind, I would accept his blindness...it would be stupid to do otherwise. Whatever label my son has, I know that life is more difficult. It doesn't make me love him less or want to get rid of him. I'm amazed at how far he has come. I think he probably will live independently one day, but it won't be easy for him. He'll have to climb mountains that most people see as speed bumps. And as with most disability, he won't be able to do it alone, and will need the assistance of people who won't understand why he is so different, and the assholes will make his life miserable if he lets them.

I wonder, if we did not include that 5%, how much of the neurodiversity crowd would be left? I'm not a curebie, either. I belong to no group who would have me as a member. Maybe I'm a realist, and regard what my own senses tell me. And that is, that neither the curebies or the neurodiversities have the answer. Life isn't black and white.



jonathan said...

@use the brains godgives you

No, there are certainly no easy answers to the problems that autism causes for those who have it and their loved ones.

Autism Contradictions said...

I used to read blogs from autistic people who lean far in the neurodiversity side. I bashed Autism Speaks right alongside them.

Then I began to wonder why the same autistic persons who hate Autism Speaks for speaking on behalf of autistic persons, speak on behalf of ALL autistics including the severely disabled autistic people who cannot communicate, let alone communicate by speaking.

I don't like Autism Speaks much, because I am informed that less than 4% of its staggering funding goes to autistic persons. I want to know how much of ASAN's funding goes toward the same autistic persons that ASAN represent, especially autistic persons with severe disabilities who are almost wholly dependent on other people to care for them.

Will these autistic advocates care for other autistic persons who cannot care for themselves? Are there any examples of autistic advocates who are leading by example and not just leading by giving speeches?

Anonymous said...

"If my son was blind, I would accept his blindness...it would be stupid to do otherwise. "

Yup!

You would accept his blindness.

You wouldn't badmouth people who aren't blind, badmouth sight itself, and have a sour-grapes attitude about the fact that the visible spectrum exists which means things can be seen by most eyes in the first place...

LokaSamasta said...

Does this give us any insight into the delay: https://www.facebook.com/CFourA/posts/606158916073622?comment_id=6354382&reply_comment_id=6354438&total_comments=4

?

Is Steve still searching for 'the cause' of autism, and doing so by exterminating the competition?