A book I have been waiting literally years for comes out tomorrow. I’m speaking of Neurotribes (Amazon link), a book by Steve Silberman. I was lucky enough to obtain an advance copy to review. First let me say that there are a number of good reviews of Neurotribes by Steve Silberman already on the web. I highly recommend this one by Emily Willingham, which includes an interview with the author.
Having referred the reader to an excellent review, I’ll start here with a simple recommendation: buy the book. Or, at least, find a copy somewhere and read it.
If you are autistic, read the book. Silberman gives one of the most sensitive discussions of autism a non autistic can give.
If you are a parent or loved one of an autistic, read the book. If you are at the beginning of the journey, you may want to spend your precious extra time now on books that help you advocate (like special education focused books), but there will be a time when you want this book and will be grateful it’s on your shelf. If you’ve already gone through the advocacy learning curve, it’s a good book to get.
If you are a professional and think you understand how our present understanding of autism came about, you need to get this book. You will be surprised with what you didn’t know.
If you are not in the autism communities, Silberman is a wonderful writer and the book will give you a great read and you will learn a great deal about autism, autistic people and non-autistic people.
Neurotribes is a rather thick book on what seems a specialized subject and I worried at first that it wouldn’t be accessible or interesting to the average reader. But I was immediately struck by how beautifully Silberman’s writes. It is very accessible and entertaining to a general audience.
By now readers are probably wondering when I’m going to stop recommending the book and start reviewing it. Answer: now.
Autism is comprised of many very disparate topics and Neurtribes captures that, with each chapter touching on the various aspects of autism. First and foremost, autism is about people. Autistic people primarily. And Silberman approaches his book with a great sensitivity towards autistics. The book begins and ends with autistics. We start with Henry Cavendish a historical figure who was very likely autistic and ends with an epilogue about Mark Rimland, who has a key place in defining current perceptions of autism is. Mark’s father was autism researcher Bernard Rimland, who is best remembered for his role in defeating the idea that autism was caused by bad parenting. Mark was also one of the role models for the fictional character Raymond Babbit–Rain Man.
Silberman ends the book with a simple statement. And like many simple statements, many of us forget the message:
Midway through the journey of his life, Mark has the most precious and elusive thing that anyone can hope for. He is completely at home on earth.
Autism is a disability. It is a different operating system for the brain. It is a difference. It is so many thing. But all of us, autistic or not, autism parents or not, would do well to follow Mark’s example. Find our place.
Autism is also about non autistics. People who love autistics and people who research autism (and there’s a lot of overlap in those groups). And Silberman pulls all the various groups together in his telling of the story.
Silberman establishes himself as the foremost expert on the history of autism. How did Kanner and Asperger independently come up with the concept of autism (hint–they weren’t completely independent). Why did Asperger focus on the less clearly disabling aspects of autism (hint: he was at work at a time when disabled people in his country were rounded up and killed). We can go on and one, but these little snippets do not do justice to the depth that comes from the fact that Silberman has spent the past four years researching and writing this book.
The depth that Silberman brings to autism’s history (and present!) could easily become bogged down in the details. Neurotribes avoids this without sacrificing the detail. Autism is told through the people, people with personalities and people placed in the context of their time and culture. And that’s what makes this more than an example of thorough research but of skillful writing. We not only hear about Kanner and Asperger (the two credited with first describing autism), but of the people in their labs and the people who followed them. But mostly, of autistics. And not just autistic patients in clinics. We meet one of my personal favorite people, Leo Rosa (an autistic young man) and his mother Shannon. I met Shannon and Steve at about the same time, at IMFAR, an autism science conference, in 2011. We meet many more people and the book is influenced by literally hundreds of people, autistic and non, for whom there just wasn’t room in the book. By telling the stories through people, the book becomes a real read.
I realize that I have yet to discuss neurodiversity. The full title of the book after all is NeuroTribes, The Legacy of Autism and the Future of Neurodiversity. Silberman introduces the topic thus (referring to his 2002 Wired article “The Geek Syndrome”)
One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity:the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.
and in another place, he states
Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.
One last note: autism’s history has some very low points. It can be very difficult to read about the Nazi eugenics program or the way some non-Nazi’s treated their autistic research subjects. I know that some, especially autistics, will find these sections painful to read.
That said, in case my recommendation was too subtle above: I recommend buying the book 🙂
Here are more reviews:
The Atlantic has Before Autism Had a Name.
The Guardian has: Neurotribes review – the evolution of our understanding of autism
The New York Times: ‘NeuroTribes,’ by Steve Silberman.
There are more if you search a site such as google news.
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By Matt Carey
note: I have personally met the author of Neurotribes.
Left Brain Right Brain 
The Atlantic recently featured another favorable review:
http://www.theatlantic.com/health/archive/2015/08/autism-history-aspergers-kanner-psychiatry/398903/
It’s interesting that Dan Olmsted recently took another victory lap for his ten year-old investigation that led him to claim that ASD simply did not exist before Donald Triplett (autism “Case 1”) was exposed to mercury. Faced with evidence from the Atlantic article (and thus from Silberman) that Triplett was actually diagnosed by Dr. Georg Frankl, who had years earlier collaborated with Hans Asperger on work that included the diagnosis of hundreds of cases of ASD, the best response from the AoA faithful was that, well, perhaps those affected individuals (as well as, I suppose, those diagnosed even earlier by Grunya Efimovna Sukhareva) were exposed to, um, something environmental, without acknowledging that the major environmental change, clearly, was the development of child psychiatry. (It may be possible to believe that things don’t exist until they are named.)
Dan Olmsted feels some sort of ownership over the history of autism. I suspect he and Mark Blaxill will review Neurotribes and claim that Silberman got it all wrong. And in the process leave facts behind. They did that with Richard Grinker, including the abandon facts part.
“the major environmental change, clearly, was the development of child psychiatry”
Very, very true.
Neurotribes is now 279th on the Amazon sales list for books.
Not “we are in the top 10 for some obscure amazon category” but in the top 300 books of any kind that Amazon sells.
Like the “whistleblower” one being the top in “Non-Governmental Organization Policy.” So the cdc is not part of the US government?
Now at 174.
Just ordered my copy, and would also recommend “Under the Banana Moon” by Kim Tucker. Check it out on Amazon?
Neurodiversity is nonsense. Autism is labeled a disorder because one must exhibit enough disorder to be considered decisively at a handicap in society to be clinically diagnosed, Silberman, Robison and other authors on the subject infer that autism is more a lifestyle than disorder. Which presents autism as some sort of minor eccentricity all genuis’ have. All the while this encourages self-diagnosis and those self diagnosed advocate as autistic see #boycottautismspeaks or #actuallyautistic. The ‘self-identified’ autistics now outvoice those who have been clinically diagnosed. Because interpersonal communication is often inhibited in autistic people, you can be relatively sure that most online self advocates are self diagnosed, therefore their voices are null and void. At least until there’s some sort of E-verify to prove they’re indeed clinically diagnosed.
Perhaps you should try reading the book before telling how you think what the author’s opinion is.
And risk being wrong?
I just finished with the second chapter. I am amazed that the family in that chapter (who I will not name so that Allochthonous1 has to actually read it, and not Google them) were also told that their child was not autistic because he smiled and looked directly at the doctor. Which is exactly what I was told a decade before them!
As a parent advocate for an adult who really needs services, but has normal intelligence, that getting a real diagnoses is not optional. It is required for the services he is getting in job training, getting a job, and hopefully later some supported housing. It is also required as part of getting a special needs trust, something we are starting to do (delayed by a week due to the lawyer having a sick day).
Neurdiversity is the idea that there is, well, a diversity of neurologies in the world. How exactly can that be nonsense?
You might want to actually read what Silberman and Robison and others write rather than wherever you are getting your information. Because you are wrong. Perhaps if you read Silberman’s book you would know that there’s an entire chapter about Leo Rosa. Read up about Leo on the various blogs his mother writes and tell me that it’s all a lifestyle.
Ironically you claim that self advocates are self-diagnosed while using John Robison (clinically diagnosed, multiple times as he’s participated in research) as an example.
Seriously, get information from primary sources and use it to back up your arguments. Otherwise you just demonstrate your ignorance here. I can point you to places where you could rant away like that and no one will check your facts and will give you all sorts of agreement and encouragement. This isn’t such a place. Knowing you speak from ignorance, I can and will counter your misinformation.
Here’s the thing–people with very great challenges due to autism, for example my kid, need the sort of world that the neurodiversity movement is promoting. Acknowledging that my child deserves as much respect as any other human is key to the future. Knowing that a society will support my kid out of respect would be great–because supporting my kid as a burden or out of pity means that my kid would look forward to the sort of pitiful support that is now afforded to the disabled.
You also ignore the fact that many voices in the neurodiversity movement are parents of autistic children with major challenges. Myself. Shannon Rosa, Kev Leitch, Jennifer Meyers…the list goes on. We speak out because we want a better world. We want respect. We want a world where people don’t try to discount the challenges of the disabled–which YOU do with your “self-identified” attacks.
Sadly, some of the greatest harm to the future of my kid comes from other parents of autistic kids.
“therefore their voices are null and void. ”
Remember this when whoever you feel you represent (child?) is someday ignored and sidelined.
Great review of NeuroTribes. I had the chance to read the book as well and interview Steve SIlberman on The Autism Show Podcast here: http://autismshow.org/neurotribes