Saturday, December 26, 2015

Why you shouldn't buy Neurotribes: Silberman trivializes "head-banging" and "diaper-wearing"

I see that one of my favorite autism writers is at it again, trivializing the fact that some children on the autism spectrum engage in self-injury and are incontinent.  In this article, Steve Silberman was asked about one blogger who criticized his book, because he left out any descriptions of autistics who were "head-bangers" and "diaper-wearers"If the Forbes magazine reporter is not misquoting him he states:

 “Is this really how we want to describe our fellow human beings, no matter how many serious challenges they have in daily life? If we live long enough, we all become ‘diaper wearers’ eventually,” Silberman said. “Disability is a part of the human experience.”

Since Silberman seems to take umbrage to the words "head-bangers" and "diaper-wearers", i'll refrain from using those terms and just make the more polite factual statements that there are persons on the autism spectrum who self-mutilate themselves and who are incontinent.  I don't know if Leo Rosa and Mark Rimland, apparently the only more severe cases of autism that Silberman has ever encountered, engage in self-injury or are incontinent, but there are in fact some autistic people for whom this is a fact of life.  Though I have no recollection of this, I was told by my parents that as a toddler I'd sometimes bang my head into a wall out of frustration.  Though I don't do this now, I think this was before the age of five and I have no memory of this.

Most persons with an interest in autism have not been involved in it as long as I have, so they have no memory of when Ivar Lovaas and his disciples would give powerful electric shocks to children who did this and justify it, by saying that they were saving the kids from chewing their fingers off or banging their head into a wall so hard that they would receive serious injuries and stating that kids who had to experience the discomfort of wearing a straight jacket could have the freedom from the restraint.  Mr. Silberman, I know you did research on Lovaas and wrote of the historical shameful period when aversives were used, so you should know better.  Some children need to be in helmets so they won't get injured banging their heads into walls.  But I suppose Silberman and the rest of the neurodiversity crowd would just argue this is a reasonable accommodation so the head banger is just fine as long as he/she wears a helmet.  I wonder if this does not interfere with their sleep or how they'll shower and shampoo so they don't get lice or something in their hair because the parents/caretaker does not dare take the helmet off for fear that the child will get a serious injury. 

While it's true, we all have to wear diapers as infants and early toddlers, there are plenty of people who never have to wear diapers after this, no matter how old they are, like my paternal grandmother who lived to 105. 

I don't know how disability has ever been a part of Silberman's human experience, unless he believes that his homosexuality was some sort of social disability prior to 1974 before the american psychiatric association removed it from the DSM when he was seventeen. 

Mr. Silberman, if you ever happen to read this, I just want to say if the reporter was not misquoting you, shame on you for saying this,  Shame on you for trivializing this horrible disability you have no experience with.  I know in the past you told me to be careful of what I write as you did not name drop Zuckerman and Gates as autistic and that was mere speculation of a reporter that was interviewing, and I've done my best to heed your warning, but it sure looks to me like the reporter was asking you this and quoting you directly.

It's bad enough that you've stated that the reason autistics can't work is that human resource offices aren't used to nonverbal people and won't give them a communication device, that autism versus neurotypicality is no different from a windows versus linux operating system, and the fact that you've stated mark rimland does not need a cure for his autism because of the love and acceptance of the community he lives in.  However, now, in my esteemed opinion, you've hit an all-time low and I just want to tell you I feel this statement of yours is absolutely despicable if the reporter was not misquoting you and you should be ashamed of yourself.  This is another reason why everyone should boycott your book or any other book you write in the future in spite of the reporter saying we should buy it.  shame on you! Soapbox rant off. 


Roger Kulp said...

I don't believe Mr. Silberman's language has hit a new low.He has yet to plumb the depths reached by either ASAN or Age of Autism.Give him some more time.

I have come to have a unique view point on this.I think we all know that neurodiversity types will never acknowledge low functioning autism,or autism with intellectual disability.Just as we cannot convince antivaccine parents their children have a congenital condition,and are not "vaccine damaged".Both groups are brainwashed beyond redemption.We have to accept this and move on.

I was not fully toilet trained until I was almost nine years old.I have been in online groups where parents say their children are eleven or fifteen years old and finally getting out of diapers.It is kind of hard to explain to someone who has not been through it,but bowel and bladder control does not always come naturally.There are all sorts of problems that can prevent it.Medical conditions like GI disease,neurogenic bladder,and chronic urinary tract infections on the one hand.Or neurological problems that can cause disruptions between the brain and control of the bladder and the bowels.

I don't know about other autistics,but for me,my episodes of headbanging was due to treatable seizures.There is a good bit in the medical literature about this.I would have what I call "grey outs" where I could not control my actions while head banging,and was barely aware of what I was doing.Like much involved with low functioning autism,it is complicated stuff,and unlike Mr.Silberman,I have been through it.

I think in the long run,our battles are not with trying to convince neurodiversity to accept that low functioning or severe autism exists,but to try to convince parents their low functioning children are more than just "autistic".That these disorders that present as "autism" are a complicated network of multiple congenital disorders,science is only beginning to understand.Disorders that may not fit into established patterns of what a genetic disease is,but are congenital all the same.What is currently needed is greater public awareness of all of the advances in science,so parents and doctors can look for a diagnosis beyond autism.A few little blogs,like Paul Whiteley's Questioning Answers read by a few hundred dedicated followers is not going to do it.We would need the major media outlets to explain it all in simplified terms on a regular basis.I don't see that happening,and it probably never will.Ideally I would like to see a whole bunch more disorders eventually "cut loose" from autism the way Fragile X has,and leave "autism" as a label for the likes of ASAN.Kanner's original articles were seventy years ago,it's time to move on.

jonathan said...

@Roger. While Silberman's words may not be an all time low for all of neurodiversity, I felt they were an all time low for him. That is what I meant in the blog post.

I agree that autism is a wastebasket term for a variety of disorders due to a variety of causes. The problem is that unlike Tuberous sclerosis, fragile X, cerebral folate deficiency, etc., most of them are idiopathic. They are caused by a variety of genetic and environmental factors working in concert during fetal development. I agree that at some point science may find more things and we can have a more specific term for these things than autism, but I suspect that may be a while.

Anonymous said...

If disability, human races, gender, beauty, athleticism all happen to be social constructs, I guess that also means gravity & the speed of light also happen to be 'constructs' too. because after all, according to that kind of logic, nothing real exist, as if how society sees things is all an illusion, as if everything that happens wrong is society's fault. 1 of the few goods things from me never going to college is having the luxury of never being exposed to such nonsensical 'thinking' that is typically taught in sociology 101 @ your average second rate American university. I maybe an underemployed, mildly disabled, bullied, rejected, nice guy loser. But hey, @ least I still have my white, cis-male, hetero, Christian privilege, right, which I suppose that can still count for something, right!? Because all & all, some people deserve more sympathy for their oppression by society, such as Steve Silberman. Chew on that SJW types!

Anonymous said...

Read and now.

Asperger himself was way more pro-Nazi than he needed to be to survive the Third Reich's occupation of Austria and in the NPR link Silberman *defends* that. A lot of people in the comments defend it too.

Anonymous said...

I am - quite literally - in the middle of reading 'Neurotribes', and thus far the book has been quite good, although I have already noted his strongly held belief that autism is purely genetic in origin (I don't agree - environment plays its part too). Prior to my purchase of 'Neurotribes' I did not know that the author was a 'neurodiversity' proponent, but if I had known this I would not have bought it. I do not want to contribute in any way to the acceptance of something as devastating as autism, or even Asperger's Syndrome which, by the way, I myself suffer from.

Yes, that's right - suffer. It is all too easy for someone who is neurotypical, as people now like put it, to get up on their high horse and pontificate about the supposed benefits (Really? Like what?) of having either of these two conditions, because unless one is actually afflicted in this way then one simply has NO idea how cruel and frustrating these conditions are. The self-proclaimed representatives of the, entirely online and therefore illusory, autism community may like to claim that they speak on my behalf, but they do not and never will. I want my condition to be completely cured, and I will never compromise on this, and yet these idiots are doing all they can to dissuade research that may benefit those of us who are actually on the proverbial spectrum! As far as I am concerned, they are actually worse than 'Autism Speaks' and the anti-vaxxers.

There are times I wish I knew that both karma and reincarnation were real, so that I could wish for these cretins to experience what it is truly like to be like me in their next incarnation. Divine justice, that is what is needed here.

Anonymous said... says

"I don't think this is a black-and-white thing. I believe the research that shows autistic people's relatives (and sometimes autistic people) are capable of great mathematical genius. I think it's beneficial to somebody that autism is in the genepool. Unfortunately, that's not usually autistic people ourselves."

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