The following is an opinion piece by one of our readers, Jonathan Mitchell. In this blog Jonathan reviews Steve Silberman’s recently published book «NeuroTribes: The Legacy of Autism and the Future of Neurodiversity». Contrary to Mr. Silberman I steadfastly believe in research and medical treatment for those autistic individuals that may need the same. Although Mr. Silberman’s writings are of great interest to me, I have not read his book and will therefore forego providing an opinion of the same. In the meanwhile, I invite readers who have read the book to provide their own comments.
Jonathan is a self-described 60-year-old man on the autism spectrum who does not agree with the neurodiversity perspective and actually lived through the refrigerator mother period, having spent many years in psychoanalysis as a child. For those interested Jonathan published another opinion piece on this book: https://corticalchauvinism.com/2015/09/09/neurotribes/
Steve Silberman’s neurotribes has just come out and is getting a lot of media hype and so far it’s a huge commercial success. I’ve been waiting for years to read this book and now that I have I can blog about it.
First off, I said that I wouldn’t judge a book by its cover though I did have some expectations as to what it would be based on the company the author keeps and the variety of things that he’s written on the internet. I’d like to say I couldn’t help having some preconceptions about the book and I have to concede that they were at least partially wrong. It was not the neurodiversity preachathon that I expected it to be nor did promoting the assortive mating theory play a prominent role in the book which Silberman wrote about in his Wired magazine article. Nor was it as offensive as I’d thought it would be. Though some parts of the book were offensive and there were plenty of other problems with it (which I’ll get to in due course) that merited a one star review on amazon, Now that I’ve admitted some of my prejudgements were wrong, I’d like to write some commentary on the book that I could not cover alone in my scathing one star review.
Though Silberman’s writing was very readable, the book was arthritic tortoise in its pacing. Silberman writes a lot of minutiae and back story in each segment which was extremely plodding and made for some dull reading and took an eternity to really cut to the chase of his topics. It was also very verbose and I believe a good editor (which apparently he didn’t have at avery penguin or in the process of writing the book) would have cut it by about 50% as he could have expressed ideas in about half the words he wrote. The writing is also very verbose and long-winded. The book is also poorly organized as it flits from one arcane topic to another with no arbitrary order he goes from talking about Wakefield or Rimland for a while (giving superfluous backstory on each subject that causes the book to drag) then out of the blue goes on to nonsequiters about IT individuals and what they did with computers which would seem to have no relevance to the subject matter, except he wants to imply that these persons are autistic or at least have autistic traits and goes on about these people.
He first writes about the refrigerator mother theories of the etiology of autism that were espoused by Kanner, Bettelheim and other lesser known individuals (including my own psychoanalyst). He writes from the perspective of how historically undesirable they are and then tries to suggest that we’ve evolved to neurodiversity which is more desirable.
I’m curious as to whether or not Silberman could have interviewed a middle aged adult who had actually experienced this era first-hand. I personally fit this bill. As I’ve written before on this blog, I was in psychoanalysis for more than ten years by a therapist who studied under Anna Freud who suggested among other things that the etiology of my autism was due to castration anxiety, due to the fact that I had a younger sister and I must have seen her nude and noted her lack of a male organ. She stated I believed I thought my parents planned to be like Lorena Bobbit and this was in part the cause of the etiology of my problems. This was also traumatic to my parents.
Ironically, though the author implies that in the twenty-first century, we’ve evolved from this bad history to the concept of neurodiversity which he embraces wholeheartedly not only in this book but in various other places on the internet as well in the five years he spent writing this treatise.
The truth is neurodiversity is in part a twenty-first century incarnation of this sad period with some of its less savory members saying the reason I’m depressed over my autism is that I had a horrible domineering mother who taught me to hate myself. Others have said this is where my disability from autism comes from. A few of these people have called my mother a witch and a yapping shrew.
Others have not resorted to name calling but in the case of John Elder Robison have stated that parents might want to do a treatment just for their own convenience and not to help their child as he stated on Harold Doherty’s blog. Others have equated a cure to intolerance, others have said that autistic parents don’t give a f*** about their children and wish they’d drop dead. Others have equated parents of autistic children or certain charitable autistic organizations with the Ku Klux Klan and parents of autistic people as akin to members of the KKK who are forced to raise black children. These include IACC member Noah Britton.
Silberman also does not come right out and say that Henry Cavendish and other notable scientists had autism, but certainly implies it and if you read between the lines implies autistic type thinking was responsible for many scientific discoveries and inventions. He is not a clinician and Cavendish died nearly 150 years before he was born, so i’m rather perplexed as to how the author can come to these conclusions. It’s true Cavendish was very shy and eccentric but obviously he did not have executive functioning problems of an autistic.
The author repeated his offensive statement (that i’ve commented on previously) that the difference between autism and a non-handicapped person is analogous to the difference between a linux and a windows operating system that just work differently. A more accurate analogy would be between a working computer that runs windows and a computer that constantly crashes or has constant blue screens of death and shuts down due to overheating or having malfunctioning memory chips.
Another offensive comment is implying that the problems with autism come from oppression rather than disability as was the case with Jews at one time (and possibly still in some circumstances). He states in this analogy that autistics are a relevant minority group as there are as many autistics as Jews in the U.S.A. according to one source at least 2.2% of Americans are Jewish. Even if you go by the CDC’s 1 in 68 figure (which many including Silberman himself misrepresent) and assume this figure applies to people in all age groups, there are still more Jews than autistics in the U.S.A. The 1 in 68 figure only applied to one birth cohort in 2002 when they were eight years old. This assumes that the prevalence rate is the same in all age groups for which there is no proof. The CDC and others have changing prevalence figures all the time based on changing definitions of autism and the locations where they actually look for autistics which change every two years. The 2.2-3% Jewish figure has held up over time for decades. As a member of both groups (I’m both autistic and Jewish) I not only find Silberman’s analogy offensive but it is outright wrong.
In the last chapter he trivializes mark rimland’s very serious handicaps by stating that the support he gets from family and community are far better for him than a cure would be. I’ve met mark rimland at an autism conference and he is quite handicapped. He’ll never be able to take care of himself and will need lifelong aides to care for his every need and take care of him constantly. If his name were Mark Smith or Mark Jones and his father had not been a well-known figure in the autism community, he’d never have been able to promote his artwork and he would never have received the support that Silberman cites.
Silberman also lauds specilisterne as a solution for the employment problems of autistics though it was only able to exist through subsidies from the socialist government of Denmark and grants from the state of Delaware and has never been able to offer real and sustainable revenue and employment of autistic people and has lost money.
He also claims there are all sort of services and accommodations that can help autistic people and that we should not be spending time on scientific research to help autistic people. For the most part, he’s vague as to what these are or how they can be workable. I contend that no accommodations will help autistics get around the disabling aspects of their condition.
Most of the autistic people Silberman wrote about in his book are at the mildest end of the spectrum (assuming they’re autistic at all).
It’s sad that Silberman’s book will inevitably be such a commercial success and get all the notoriety it continues to receive and that people will get the wrong idea about autism and what a horrible disability it truly is and how much we need to do scientific research to find the cause, find viable treatments and ultimately cure this devastating disease.
Manuel: As anyone who has even skimmed my book or listened to my interviews knows, I see autism as a profound and pervasive disability that deserves more scientific research, better treatment options (particularly for associated conditions like epilepsy), and social accommodations comparable to other disabilities such as being blind or deaf. Reiterating things that aren’t true about my book — or offering space on your blog for others to do so — while admitting that you haven’t read it seems less than fair to me. For example, of course I interviewed middle-aged autistic adults, as well as parents and clinicians, from the «refrigerator mother» era, and refer to those interviews in the acknowledgements. Thanks.
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I had committed myself to writing several prefaces for other books in the last few months, thus allowing me little time to do anything else in my spare time. In this regard I am sorry to say that I have only read some 50 pages of your book. However, I would agree with Jonathan and Claudia, in that the book is extremely biased. The examples of Cavendish and Dirac are well known and serve to make your point. Although Michael Fitzgerald has been criticized for retrospective diagnosis, each of the cases you cite does appear to me to have traits of Asperger. The reader however would have been better served by original research as to others within the literature, investigating the so-called Blessed Fools of Russia, interns at the lunatic asylums in England (for which records and histories still persist), the Dumb Ox follower of St. Francis, the case of Hugh Blair, Uta Frith contention of feral children and autism, etc. All of this would have shed a more comprehensive view of autism pre-Kanner. Although I have not read ahead, Michael Fitzgerald also brought attention to Asperger’s 1938 presentation and Adam Feinstein wrote one whole chapter in his book based on the interview with Asperger’s daughter and the perspective of the eugenics movement. Still Asperger wasn’t the first to describe symptoms of the condition. There may have been many others before him. The Russian Dr. Ewa Ssucharewa could be such an example, her paper was written in 1926. I have enjoyed reading the book for its writing style. For somebody who has read about autism and experienced it in his family, the book thus far is extremely biased. As an aside I appreciate that you took time in writing your comment, the kindness in the same and I do believe in your sincere intent.
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Thanks, Manuel, but again, you do both yourself and me a disservice by commenting prolifically about my book without having read more than a few pages. For instance, I have lengthy sections on both Grunia Sukhareva’s very important work and J. Langdon Down’s accounts of children from Earlswood Asylum in Surrey. If there’s anything more «biased» than repeatedly criticizing a book you haven’t read based on simply erroneous assumptions, it’s hard for me to imagine it. But I look forward to having a serious conversation about my book with you someday after you’ve read it, hopefully in person.
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As you say, and I have readily admitted, I still have to read the book. However, I look forwards to discussing the same with you after doing so.
I look forwards to reading about Down.
I was not aware that he reported on autism. My comment was about doing original research on those interned who could have had a diagnosis of autism. Although not important I did read ahead for the sections on Bernard Rimland. I have promoted the idea that he could be considered the founder of the neurodiversity movement (see previous blog). In this regard, Steve Edelson was born and raised in Los Angeles and later move for work to Oregon. Bernie also promoted the idea of an intervention based on vitamin B6 rather than B12. The B6 story is interesting because of its link to magnesium. B12 came later. Best regards.
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steve silberman. I read your book, so you can direct your comments to me and not Dr. Casanova. You state I wrote something about your book, that wasn’t true in both of my blogs posts. I’m quite curious what I wrote about your book that was not true. I’m curious if you believe autism is a medical disability and not just a social disability as the neurodiversity movement you endorse has repeatedly said. I hope Dr. Casanova does read your book and I’m sure he can comment on the things you have written that don’t ring true and I hope he does.
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As I said above, Jonathan, I consider autism to be a serious disability comparable to being blind or deaf, as I make very clear in my book. I do not consider blindness or deafness outside of their social contexts, any more than I would say, «Aha! If it wasn’t for that pesky Americans with Disabilities Act insisting on ramps everywhere, that girl would NEVER have been able to enter a classroom on her own steam!» There is no «medical disability» that doesn’t also have a social context.
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Comparing autism to a linux operating versus a windows operating system is certainly implying you don’t consider autism any sort of medical disability and merely some sort of «difference» Though you’ve said in other places you regard autism as a disability. There is certainly inconsistencies in your writing. comparing autism to the ADA requiring ramps, that is certainly an apples to hurricane comparison. Autism does not have the same ability to be accommodated as the person in the wheelchair or blindness or deafness.
I’m also curious as to where you got the idea that Kanner precluded epilepsy in a diagnosis of autism even though you said this in the book, but neglected to cite such in your endnotes. John F. had epilepsy as reported in the 1943 paper. Elaine later developed seizures in adulthood which was reported in Kanner’s 1971 paper adult follow-up paper, so you’re mistaken about that
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