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. 

Joe Buxbaum's and neurodiversity's ten year prediction falls flat

One of the tenets of the neurodiversity movement and one of the tactics they most frequently use in their fear mongering talking points is the notion of a pre-natal test being available for autism.  They claim that the genetic research funded by autism speaks and other organizations has been done with the intent of inventing a prenatal test for autism so that autistic fetuses can be deliberately aborted.

This allegation predates the days of autism speaks but goes back many years ago when their predecessor Cure Autism Now was still funding researchers.  Amanda Baggs and Laura Tisoncik  on their website autistics.org greeted the reader of their home page with a photo of an aborted autistic fetus in a trashcan with the letters CAN on it, accompanied by the caption "The real meaning of autism prevention."

ND points to the cases of Down's syndrome fetuses that are aborted.

Nearly eleven years ago, in this article scientist Joseph Buxbaum stated that there could be a prenatal test developed within ten years. Given all of the various genetic etiologies in autism, not to mention the california twin study done four years ago which points to the fact that the heritability component of autism is significantly lower than once believed. I don't think we're any closer to developing a prenatal test for autism (or any form of it for that matter) and being able to selectively abort any autistic fetus than we were ten or eleven years ago.

In this piece, Autistic self advocacy network executive Meg Evans (writing under the pseudonym Bonnie Ventura) ranted about how society was trying to deliberately engage in eugenics of all autistic people.  She put up a clock on this website for the ten year countdown beginning in 2005 for when this eugenic test would be developed.  She apparently deleted the clock when it looked like her prediction based on Buxbaum's statement was not likely to come true. 

As we approach the end of the year 2015, it would appear that individuals involved in the neurodiversity movement have failed again to be terribly insightful. 

Autism speaks appoints autistic board members, pro-cure autists again scorned.

Autism Speaks has announced the appointment of three new members to their board of directors, two of three being on the autism spectrum.  The neurodiversity movement (and possibly others) had railed against AS for years, claiming they were ogres for not ever having a single board member who had the condition themselves.  Now I hope the neurodiversity movement is satisfied.  We'll see if they call Shore and Paradiz traitors.  So far, they have not used such graphic language, but upon the announcement of Shore's appointment, The Thinking Person's Guide to autism tweeted that they hoped it wasn't tokenism.  The twitter account of boycotting autism speaks stated it was a step in the right direction but they still would not support autism speaks as long as they were pro-cure and used scare tactics to tell people how bad autism is.   

Though Autism Speaks has stated that one of their goals is finding a cure for autism, they appointed the anti-cure John Elder Robison to their scientific advisory board in spite of the fact that he was a high school dropout with no knowledge of autism science.  This did not satisfy neurodiversity proponents and Robison ultimately ended up tendering his resignation when autism speaks would not come around to his way of thinking.

Paradiz is a former professor of German literature at Bard College.  She subsequently started a consultancy business for educating autistic children with no formal training or background, except for being the parent of a son diagnosed with Asperger's.  She was apparently diagnosed well into adulthood after her son received his diagnosis.  She was formerly married to Steve Edelson who took over running the autism research institute after Dr. Rimland passed away.  She wrote a book about her son, Elijah's cup.  In this book, she describes attending the Autreat conference, one of the premier neurodiversity conferences which is presented by Jim Sinclair's organization Autism Network International.  I'm not sure where Ms. Paradiz stands on a cure for autism.

More intriguing is the appointment of Stephen Shore, who wrote the autobiographical account of growing up with autism, Beyond The Wall.  He received a doctorate in education and is a professor of special education at Adelphia University.  He also presents at conferences all over the world.  I've known Steve for many years now and he's stated that he opposes a cure for autism because it would interfere with the gene pool.  He also stated that at the time they appointed Robison to their scientific advisory board that he'd also been approached by autism speaks to serve with them in some capacity (though I'm not sure of the specifics) and turned them down because he disagreed with their views on a number of issues.  I'm not sure why he changed his mind.

The biggest disappointment is that they did not appoint my first choice, Roger Kulp.  Roger is someone on the spectrum far more severely afflicted than Shore or Paradiz.  He has looked into treatments for his problems and extensively researched the literature on metabolic causes of autism.  Roger has expressed an interest in either being on the science advisory board or the board of directors. I've written about Roger's background in a previous post so I won't repeat the info here.

I guess wanting autism speaks to stop supporting neurodiversity in a backhanded manner and taking such a cavalier attitude toward those of us on the spectrum who want a cure is too much to hope for.

Addendum:  I've just spoken to Steve Shore and he states that he's had a change of heart because Brian Kelly, the new chairman of the AS board is advocating for supports and services over a cure.  Mr. Kelly took over as chairman of the board after Bob Wright resigned in May.  Mr. Kelly  has written about parents contacting him for the need for supports and services.  Though I am not opposed to supports and services for people on the autism spectrum, I do believe that autism speaks should give more priority to scientific research with the aim of curing autism.  If autism speaks has headed in a new direction, this is certainly a disappointment.