Tuesday, August 25, 2015

NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

Shannon Des Roches Rosa 
Steve Silberman and Leo Rosa
[image: a white man with short salt-and
pepper hair, and a white teen boy with short
curly brown hair, sitting on a green bench.]
Steve Silberman's long-awaited book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity arrives in bookstores today. Finally! If you have any interest in autism whatsoever, then trust me, you need this book. (No, really. We are so excited that NeuroTribes exists that we're hosting a giveaway, details below.)

I'll be upfront with my disclosure: When Silberman described his intention to write a book that "upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently," my family and I agreed (and were honored) to be included in the project.

But I would recommend NeuroTribes regardless; I've been pining for an autism book this information-rich, this compassionate, this beautifully written, this revelatory, and this necessary, ever since my son was diagnosed with autism eleven years ago. And I hope you will agree.

I spoke with Mr. Silberman earlier this month, about some of the many topics and people featured in NeuroTribes -- including the concept of neurodiversity, the myth of an autism "epidemic," the difficulty of condensing five years of research into a single book, and why autistic leadership matters. The bulk of that interview is also up today, at BlogHer. The rest of our discussion follows.


Shannon Rosa: You uncovered disturbing scenarios from Ivar Lovaas's work with autistic children at UCLA, while he was developing Applied Behavioral Analysis as a "treatment" for autism. How did he get away with behaving so badly towards those children, according to your research?

Steve Silberman: The outrageous cruelty of Ivar Lovaas to the children in his clinic in the 1960s was unforgivable, but it was also a very complex thing. What isn’t a matter of debate is how monstrous, barbaric, and inhumane some of his methods were. He would give pre-schoolers painful electric shocks to encourage them to hug the experimenters, and to punish them for exhibiting behavior like echolalia, which turns out to be a distinctively autistic way of learning language, as Barry Prizant explains in his fabulous new book for parents and clinicians, Uniquely Human.

We should be quite blunt: Lovaas was engaging in torture, by any standard.

But it’s also crucial to understand how he excused his own behavior, which was that he earnestly believed he was saving these children from an even worse fate: life-long institutionalization. He would see children who had chewed through their own fingers in places like Camarillo State Hospital in California. The problem was that he didn’t ask if this self-injurious behavior was the natural course of autism, or if it was the children’s response to being put in brutal institutions, where they were subject to isolation, restraint, abuse by the staff and other residents, and so on.

We have to remember that Leo Kanner’s recommended course of treatment for autistic children was institutionalization, to remove them from the family environment that he catastrophically blamed for causing their autism. So, with very few exceptions like Temple Grandin -- who escaped that horrible fate because her mother Eustacia refused to put her in a place like Camarillo, and because she was diagnosed with “minimal brain damage” rather than autism -- two generations of profoundly disabled autistic kids ended up on psych wards, in straitjackets, being beaten by the staff and drugged out of their minds. Compared to a lifetime of that, Lovaas must have thought, what are a few electric shocks?

This is why it’s so important to understand the history that I tried to bring to light in NeuroTribes -- to understand both how inhumane some of Lovaas’ techniques were, and what he was reacting to.

SR: Without giving too much away: in researching the history of the Oscar-winning film Rain Main and how it fits into our cultural conception of autism, what are one or two discoveries that surprised you?

SS: The main thing that surprised me when researching Rain Man was realizing that Dustin Hoffman’s character of Raymond Babbitt was the first autistic adult that most people in the world had ever seen. Nowadays, it’s easy to trash his character as an autistic stereotype -- the savant skills, the goofy catchphrases, and so on. But what the people saying those things don’t realize is that there were no autistic adults in mainstream media up to that point, with very rare exceptions.

It’s not like now, where every hip new TV series seems to have to have an “Aspie” character. Autistic adults were virtually invisible to the culture -- even to most clinicians! -- because the diagnosis was not made available to adults on a mass scale until the 1990s. Even Temple Grandin, when she first started making the rounds of autism conferences, billed herself as “recovered from autism” because autism was still considered to be a disorder of the first years of life, as Leo Kanner had originally framed it.

But another really important thing to understand about Rain Man is that it could have been better, because at the end, Raymond has to go back to the institution, because he is clearly unable to survive outside of it. Yet the real-life autistic people that Raymond was based on -- people like Joe Sullivan and Peter Guthrie -- were living in the community with the help of their supportive parents. They represented the real natural course of autism: autism minus the decades of brutality and degradation of being shoved away, out of sight, in state hospitals. And they’re both still doing fine, though obviously they’re still very autistic. Peter continues to work in a library at Princeton University, as he has for decades.

So I ended up having great respect for what screenwriter Barry Morrow and Dustin Hoffman did with Rain Man, which was to make autism visible to the lay public on a global scale for the first time in history. With the little caveat that it could have been better.



The winners are Erin, Kacy, and Mass der Dinge! Please write to us at thinkingautism at gmail with your mailing address so we can get copies of the book to you. Winners selected using Random.org.


The publisher of NeuroTribes is letting us give away three hard copies of the book. If you would like to be considered, please leave a comment below, describing why you want your own copy. We'll use Random.org to select three winners on the morning of Friday, August 28th (Pacific Time).


Lynn McCann said...

I would love a copy to help all the brilliant autistic kids I support understand they are brilliant.

Ed Webb said...

I would love a copy of this book for my aspie son (who still proudly embraces the label and identity, despite the diagnosis having moved on to ASD), who is just starting his second year of high school - with a full-time aide. Every day, month, year throws up new friction between who he is and how society's institutions are set up for neurotypical people. But it is getting so much better now than it was a couple of decades ago. It sounds like this book would be really enlightening for him and his parents.

Unknown said...

I want this book because it seems like a great way to show people what we go through, in a way that they understand.

Also, this way I won't hog the library's copy.

mandy mc gee said...


Unknown said...

I'd like a copy to share with other parents in my support groups who are new to the world of autism and know little more that what the giant money machines have told them. They stare at me in disbelief when I tell them that I am autistic too and I "get" why their kids do certain things. I try to advise them but most would rather listen to the therapist (who is usually wrong) than an actual autistic. I think this book will be able to open up some eyes and minds!

Shannon Des Roches Rosa said...

I'd like my own copy so that I can continue to refer to it and also so that I can share it with colleagues and practicum students. I am a teacher working with autistic students. I also have several close family members on the Spectrum. on NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

John Kershaw

Unknown said...

I have a son with autism and I make every effort to educate myself as much as possible on the subject so I can effectively advocate for him.

The TPGA Editors said...

I'd like a copy to share with other parents in my support groups who are new to the world of autism and know little more that what the giant money machines have told them. They stare at me in disbelief when I tell them that I am autistic too and I "get" why their kids do certain things. I try to advise them but most would rather listen to the therapist (who is usually wrong) than an actual autistic. I think this book will be able to open up some eyes and minds!


Magistra said...

I'd love a copy for myself and my older son and to hold onto for when my older son gains a few more years. I would share it with my teacher colleagues who are so open to learning more and come to me with their questions.

Aisha from expatlog said...

I've always felt like an anthropologist amongst humans but remained undiagnosed until 38 when my youngest received her diagnosis at three years old. Since then I've been researching to make sure her future is the antithesis of my past and this book would give me plenty of ammunition to make that a reality. Can't wait to get my hands on it - a big shove in the direction of positivity for the neurodiverse and neurotypical alike.

Deanna said...

I'd like to receive the book to understand my eight year old daughter and autism a little bit more.

Cynthia M. Parkhill said...

Thank you for the opportunity to participate in the "NeuroTribes" giveaway. I am a woman who learned in adulthood that I am on the autism spectrum. Finally I had an explanation for I'd always felt so different from everyone around me.

I learned that many things I'd struggled with and endured (social awkwardness, clumsiness and bullying to the point of school-wide rejection) were actually common experiences among people who were like me.

Today through blogging I work to raise the profile of autism among adults, specifically among those "invisible" generations who were not diagnosed in childhood.

On my blog, I frequently post reviews of books I believe to be of benefit to autistic readers. I consider "NeuroTribes" a "natural" for inclusion on my list, and would like an opportunity to read and review this book.

Tasha said...

I would love this book because I work with children who have autism. Others' expectations for them consistently fall short of what they are actually capable of. It is frustrating to see and I would love to learn more (thinkingautismguide says the book is "relevatory."

A said...

I would love a copy to share with therapist and other parents to help them see beyond stereotypes. It looks to me, sometimes, they need more help in dealing with autism, then autistic kids.

kevix said...

I can't wait read the collective research of this important fellow autistic and discover more about the tribe to which I belong as well as spread the wisdom to others and recommend this book.

EllenFitz said...

While I own a copy already, it's staying with me so I'd love to win a copy to gift to the SpEd teacher(s) who worked with my son, finding ways to allow him to graduate despite his resistance to following "the rules".

Raul Gonzalez said...

In the spirit of Foucault's Madness and Civilization, I am hoping this book provides an ideologically and historically neutral account of autism. The media and many so-called "historical" accounts tend to be so painfully biased (or just downright stupid) that it is essentially impossible to take them seriously. As a parent of a child with autism (with a good number of autism traits myself), I think it is key to understand how the cultural representation of autism can have devastating consequences without critical thinking.

SteveG said...

I have a nephew who has ASD and my sister is floundering trying to deal with it. She has no idea how to start or where to turn. I've tried to help her as best I can as I've done some research on autism recently but there needs to be a better way to get the information to her. It sounds like this book would be a wonderful starting point for her and could get the help for my nephew that he needs so very much.

Thank you for the article and thank you for the consideration. You're doing wonderful work and it's much appreciated.

Susan Murray said...

THANK YOU, Shannon Des Roches Rosa, for this wonderful, much needed book, enlightening us on the history of the world of autism! I am a Grandma-aged Auntie, of seven year old Jonathan, a bright, darling boy, diagnosed with autism at age four, who is trying so hard to make his way in the world, through all the systems and programs currently in place in our society. I am appalled at what he has to deal with and go through, in addition to the effects of the actual condition of autism. It is clear, that, although things have improved, there is much much more still to be done to further understanding of autism, in order to be able to realistically provide what is actually going to be helpful, to people with autism, and not just box them up into categories, like animals, requiring what is thought to be the best 'treatments' of the day. Jonathan has had two years of school, but he spends a good deal of time in the hallway.... in 2015! In order to go forward, we need to look back, to gain the clearest insight into what is needed and why... I have so much hope for the future and would very much appreciate a copy of your book, to assist us in knowing everything we can to be strong advocates for Jonathan. Thank you so much for the opportunity to win a copy!j

Unknown said...

I would absolutely love a copy of this book! I work within the field of disability rights. In recent years I have had the opportunity to work with and get to know some of the amazing and marvelous people in my community who are on the autism spectrum as well as their beautifully fierce circles of support. The more I can learn about Neurodiversity the more tools I will have for supporting a fully inclusive community.

Unknown said...

i support steve silberman and tpga and the gang. i really want to win the book please let me win as an autistic aspie adult i support neurodiversity too.and this book would be great for suggesting at my guest speaking times..as well our local bookstores havr few copies...thank you 😊

Unknown said...

I'd really like a copy of this book. Beyond the obvious of being an autistic person myself and being an advocate around policy impacting the ID/DD community, I'm also really interested in the history of treatment of PwD and this looks to be an essential for my collection.

Silvia said...

I've been wanting to read Silberman's book after watching his TED talk regarding Neurotribes. We're always on the search for books on autism that resonate with us to share with family and friends, and this would be a great addition to our autism library. Thank you for this giveaway!

Erin said...

My 8-year-old son is on the spectrum, and he has upended my own way of thinking about autism. I work hard at his school to help others see that he is not disabled, he just sees the world differently. Together we discover ways in which being on the spectrum is actually an asset (things like the details he sees in the world...he really sees the individual trees within the proverbial forest)! I would love to win a copy of this book. Thank you so much for setting up this opportunity!

Kacy said...

I've been looking forward to the release of this book for a while. My son is on the spectrum, and I would like to do work helping other autistic children. I'd love to learn more about the history of autism and give this book to my son when he is older and can better understand his unique neurology.

CGregoryRunWithKids said...

My comment won't be terribly profound and intelligent, but It was serendipitous that I saw this giveaway on your page today, Shannon as I had added it to my Amazon wish list just a few hours ago. I was shopping for a book that I could read and then pass along to people who work with folks on the spectrum who I'm afraid are still stuck with the mentality that we should teach folks with autism to be less autistic. You know, like I could be less diabetic with some good teaching.

Mass der Dinge said...

I am on the spectrum and I managed to finish my medicine studies, and now I am a psychiatry resident. I would like to do research on autistic adults, but it seems that I am the only one person who is interested in this topic in my country (Lithuania). Only from 1.1.2015 autistic adults in my country are allowed to be diagnosed with autism; one year ago they had to be legally diagnosed with schizophrenia and no one of psychiatrists seemed to care. Now we have the law which say that we should diagnose autistic adults with autism, but many psychiatrists say "we do not know how to do it".
And I am also interested in history of the concept of autism, and socio-cultural aspects of autism, so that book would be great for my research. If you do not give it to me I would buy it anyway.

laurajwooton said...

I've heard nothing but good things about it. I think I could learn a lot from it.

Also I never say no to books.

Shannon Des Roches Rosa said...

The winners are Erin, Kacy, and Mass der Dinge! Please write to us at thinkingautism at gmail with your mailing address so we can get copies of the book to you.

Winners selected using Random.org. Thanks to everyone who participated.

1. Lynn McCann
2. Ed Webb
3. John Buckmaster
4. mandy mc gee
5. vidapen
6. John Kershaw
7. John Smith
8. Magistra
9. Aisha from expatlog
10. Deanna
11. Cynthia M. Parkhill
12. Tasha
13. A
14. kevix
15. EllenFitz
16. Raul Gonzalez
17. SteveG
18. Susan Murray
19. Shannon Mulhall
20. Zoey Roberts
21. Savannah Logsdon-Breakstone
22. Silvia
23. *Erin
24. *Kacy
25. CGregoryRunWithKids
26. *Mass der Dinge
27. laurajwooton

Erin said...

Oh my goodness! Thank you so much! I can't wait to read it and share what I learn. I'll send an email out with my mailing address. Thanks again!

Mass der Dinge said...

Thank you so much!