Wednesday, August 26, 2015

Silberman's play of the refrigerator mother card and my one star review of 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. 


schaferatsprynet said...

Trying to shoehorn autism into a political minority group, subject to all due oppression is specious at best. This is the foundation of the ND movement, and it is severely cracked. Up to two decades ago, nobody knew anybody with autism. How exactly does one get oppressed and discriminated against historically for something that rarely existed?

This is a sham that exploits naive higher functioning autistic adults on one end, and dilettante guilty liberal politicians and autism experts on the other. It is a ruse, and an ugly one that exploits the disabled and self-despising liberals who crave the need to redeem their privilege by being sycophants to professed victims. I declare this movement BUSTED.

Anonymous said...

Alex Plank complicit in murders and suicide committed by William Freund.

Claudia Mazzucco said...

I would rather say that most of the “autistic” people Silberman wrote about in his book were classified as “autistic” (or inserted arbitrarily in the Spectrum) not because of neurological causes but because the authors of the DSM really screwed-up when they constructed a mental disorder without having a clue about the social context in which Dr. Hans Asperger wrote his paper in 1943.

Roger Kulp said...

I have no desire to read Silberman's book,but to elaborate on what Claudia says,about diagnosis and classification,does he address the issue of self-diagnosis so prevalent in the neurodiversity movement?

I honestly have no problem with people who were diagnosed as children with other mental health or developmental disorders as children,who are later as having autism as adults.I have seen this with members of my own family.It is very obvious when a child is having serious problems.Problems that cannot always be classified under the science that exists at the time.But at least the person had some sort of diagnosis as a child.What I do have a big problem with are these people in their 40s and 50s,who have led successful lives,suddenly being diagnosed "on the spectrum".

Does Silberman talk about neurodiversity's origins in the antipsychiatry movement of the 70s and 80s?

Was Mark Rimland actually interviewed for the book?Has Mark ever said that he wishes his autism were cured?I assume nobody was interviewed like my sister who has high functioning autism,but also has severe mental health problems that prevent her from holding a job?My sister is one of those who hates her life,and sees suicide as the only relief.

Silberman's book only seems to prove what people like myself,and like Harold Doherty have said all along,that neurodiversity is a movement of,by,and for the top 1-2% of the highest functioning end of the spectrum.It ignores everybody else,while claiming to speak for the rest of the autism population.This is a key point that too few,other than Harold and I,seem to be making.

I am willing to bet that Silberman is completely ignorant of the work doctors like Richard Frye and Vincent Ramaekers are doing as far as identifying,and treating, metabolic causes of autism.

jonathan said...

He does not touch upon the issue of self-diagnosis. I don't think anyone is going to admit to self-diagnosis and it is unclear who and who isn't self-diagnosed among ND's. Many of them did get a diagnosis late in life, after their children were diagnosed who don't seem to be impaired such as michael john carley. Liam willey was self-diagnosed at the time she wrote and published "pretending to be normal" and later got a diagnosis from Tony Atwood so the book would have credibility. I don't recall him talking about the anti-psychiatry movement, but it's true it seems to be a predecessor to the neurodiversity movement and said similar things.

Having met Mark Rimland, I don't think he really has the functioning level or ability to carry on an adult conversation where he could be interviewed, though Silberman did spend time with him and his family and Steve Edelson who was rimland's heir apparent after he died and now runs ARI. that's why I found it so offensive that he would claim that the support Mark has received in the community is better for him than a cure would have been.

You're probably right about Silberman not knowing about Frye and the metabolic treatment of autism, though I suppose you could contact him and ask him, though I have not corresponded with him in quite some time and i'm not sure i have his current email.

lurker said...

When they keep mentioning services and accommodations repeatedly after dismissing efforts to really solve the problem, I don't think these advocates would guarantee serious fulfillment in life or participation in societal institutions, although they want others to assume they would, but rather would only care for basic needs to stay living, regardless of the levels of comfort or lack thereof which may accompany the living conditions settled for by those advocating for them. Of course, they still will distract those they indoctrinate with the handfuls of success stories which came to fruition without closely supervising caregivers. They are too willing to keep a large majority of those on the spectrum reliant on the charity of their communities and society, which is only available at the convenience and decision of those in the positions to help.

jonathan said...

Lurker I agree

Anonymous said...

In some ways some of us "naive high-functioning adults" on the Spectrum may be worse off than Mark Rimland, with respect to Mark Rimland, and his family. If he is obviously handicapped, as you pointed out, NOBODY is likely to accuse him of faking his condition, the way many of us are accused of doing We don't explain ourselves under stress, or with skeptical people, at least I don't. For years, I just thought if I followed the program, as it were, I'd be all right. I did not know that this doesn't go away, as we grew up. I myself STILL need people to bring me out of the rain, perhaps even more so, (now, as the society and it's mores, expectations, and so on, not to mention the technology, have changed beyond recognition), and I'm pretty smart--or at least I was, before what appears to be stress on top of stress, including enough medication trials for me to become a lab rat. I think I heard also that repeated Cortisol secretion can be permanently damaging to the brain. possibly to the nervous system as well. WE seem to be paying the costs of our society's, and, the medical professions' errors, As Marx is supposed to have said about the Proletariat, or the Lumpenproletariat, but enjoying few of the benefits.--and I'm not a Marxist, though he made some interesting observations. I am completely burnt out at this time, and feel increasing Anxiety, because I KNOW things are messed up these days. I feel no creative bent anymore, except occasional flashes. I don't think, in my case, being on the Autism Spectrum is all of my problem--it's apparently like one part of the elephant, and there are others, such as what I'm sure is ADHD, except they didn't call it that--I'm almost as old as you are. Also, I am observing my mother rapidly age, and I know I haven't built networks the way others say I should have. It's not that I didn't think they were important, but I do not have the knack for it. I know this is quite long-winded--I don't have these conversations with too many people, and it's not a very "conversational" subject. As for "identity politics", I agree that it probably doesn't work to try to shoehorn Autism, or people diagnosed with it, into a "minority community. Many of us are not "joiners", and shouldn't be expected to be. Peace.

Anonymous said...

Even if it is all possible to eliminate all the 'social constructs' that society supposedly 'disables' those with disabilities, there's that great big factor that no body dares mention; Human Nature. Just because someone with down syndrome can maybe get a job with Target say with said accommodations, doesn't exactly mean people are more likely to accept that same person in that work environment, as people only want to associate with those socially equal or higher than they are.& with that hypothetical person with down syndrome will obviously be not accepted because he happens to be lesser abled than his co-workers. Even if society could re-arrange itself to be more accommodating of disabled people, that still no way guarantees the qualities of lives of disabled people will be any better because as I said, 1 of the laws of sociability is people will only accept those whom are seen as equal or above. Sorry to sound so shallow, but it's best better to face reality for what it is, not what we like it to be.