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.  

New IACC Formed: Robison and ASAN picked, Roger Kulp and Pro-cure autistics scorned.

I see that John Elder Robison is crowing about the new public members, himself included, who have been appointed to the IACC (Interagency Autism Coordinating Committee for those not in the know). This agency has both federal and public members who advise the government on autism policy and decide how tax dollars are allocated.  The CARES (formerly Combating Autism Act) act which requires an IACC has stipulated that at least one autistic (maybe more) be appointed as public members.  So far, at least five (maybe more) anti-cure autistics have been appointed as public members and zero pro-cure autistics.

The post states that three autistics have been appointed to the newly formed IACC.  Besides Robison, I don't know who the other two are.  ASAN's Samantha Crane who might be so severely autistic that she could only graduate from Harvard Law school and not get a job other than working for ASAN may be one of those.  She is described in the post as "an autistic self-advocate" so maybe she is one of the other two.  If Ms. Crane is geniunely autistic, that means she's the sixth anti-cure person on the spectrum to have been appointed to the IACC since its inception.

Roger Kulp, an autistic man whose autism has prevented him from going to college and working and has to live in poverty on SSI has expressed a desire to serve.  He apparently would like a cure for autism, since he's devoted a lot of his time researching cerebral folate deficiency and mitochondrial disease.  He has approached DAN doctors and has been a subject in studies of experimental treatments at the University of Arkansas with Jill James, Dan Rossignol and other doctors interested in metabolic forms of autism.  He's read a good deal of the literature on the subject of this specific type of autism and has a true interest in finding a way to help solve these problems which have made his life so difficult.  He went to special ed schools for a number of years and has had seizure disorders and other problems.  Roger can correct me if I've made any errors about his history.

I won't come out and endorse Roger since I don't even believe the IACC should exist, but if I were to endorse someone for that position it would be him hands down.  He's also expressed an interest in being a board member of Autism Speaks.  Neurodiversity complains so much about AS not having any board members on the spectrum, I'd think they'd be happy to endorse Roger.

Though I don't want the IACC to exist, and, in fact, I support complete repeal of the CARES act (which I know congress is never going to do), Roger's appointment as a public member would have been a real boost for our side.  It would have shown the government actually gives a shit about those of us on the autism spectrum who really feel we suffer from this affliction and want to use science to find ways to solve it or even cure it.

I know Alex Plank, Michael John Carley and other individuals have claimed that all or most autistics don't want a cure.  In fact, about fifteen years ago when I used to post on the autism usenet groups Tom Mckean and I were the only autistics that I knew of who publicly stated on the internet that we didn't like our autism and wanted a cure.  Over the years, the tide has turned somewhat and I'm encountering more people on the internet who state they're on the spectrum and would like a cure, so contrary to what Plank, Carley, and others may think, we're out there.

Roger has expressed interest in being an activist and giving his input to help others on the spectrum.  I wish him the best of luck in that endeavor as it's obvious the NIMH don't care about us and I'm wondering if Autism Speaks does either.

One bright side of this is that Matt Carey of the Left Brain Right Brain blog was not reappointed this year.  Also I'm glad to see Noah Britton is gone. 

Are neurodiversity bloggers giving an accurate description of the association between autism and violence?

The mass shooting in Oregon by Chris Harper Mercer and his mother's publicly writing about his autism diagnosis have stirred controversy in the autism community as to whether or not his autism was responsible for the mass murder of innocent people.  A facebook page was created implying that numerous autistic people were shooters and that autism is associated with violent crime and murder.  After a plethora of protests and petitions, Facebook removed the page.  In response, there were a flurry of articles published on the internet by a list of authors that reads like a who's who list of some of the most prominent members of the neurodiversity movement, including Michael John Carley, Emily Willingham and the Autistic Self Advocacy Network and Matt Carey of the Left Brain Right Brain blog.   The common theme of these articles is that there is no association whatsoever between autism and violence.

Renowned writer Andrew Solomon also weighed in, writing in a new york times article about autism shooters, asking why no one was suggesting diabetes and pattern baldness as causes of mass shootings if they were suggesting autism was one.  See Gadfly's answer toward the end of the post.  

This is nothing new.  The Newgate shootings of Adam Lanza less than three years ago are still fresh in the minds of most people, particularly Lanza's diagnosis of Asperger's.  Well-known neurodiversity advocate John Elder Robison was quick to write a response absolving autism for blaming murderous behavior.  The IACC, which has had several members of the neurodiversity movement (and zero pro-cure autistics) serving on it since its inception also wrote an article disputing the association between autism and violence after the Lanza shootings.

Aside from the fact that all of these writers advocate neurodiversity, another common denominator in all these pieces is the nearly complete neglect to cite any scientific evidence that there is absolutely no association between autism and violent crime.  The trivial exception to that being Carey's citing a study by  Ghaziuddin and the studies by Mouridsen in Denmark purporting not to show an association between autism and violence.  These were the three publications cited by the IACC's statement on the Sandyhook shooting.

What does the actual literature show?  One of the problems of Ghaziuddin's report was that he only did literature reviews of isolated cases and neglected to check court records to ascertain the relationship between autism and violence.  This is an old paper nearly twenty-five years old.  What do other more recent publications have to say? Only the abstract of Mouridsen's 2012 paper is available online and I have not been able to read the entire paper.  One limitation of his 2008 paper is that it only includes convictions and not arrest data such as cases of people on the spectrum that were thrown out for lack of evidence, let alone killers who committed suicide.

Are these writers correct that there is no general association between autism and violent crime, particularly murder?  The short answer is probably yes, though it is still questionable (at least to Gadfly) how much is known about the prevalence of violence in autism spectrum disorders.

However, even if there is no clear-cut association between autism and violence and the vast majority of autistic persons are not prone to violence, particularly murder, could there be a subset of those on the spectrum who are predisposed to violence and murder as a result of their brain dysfunction, including co-morbid mental conditions that appear in addition to the symptoms of the ASD?  The answer to this question appears to be yes also.

Various case studies have been reported in the literature that gives suggestive evidence (though not specific proof of this).  For example Baron-Cohen reported on a 21-year-old man who would take a knife to his 71-year-old girlfriend.  Psychiatrist Donna Schwartz-Watts cites three case histories of individuals on the spectrum who committed murder.  She concludes their illness was in fact related to their crimes.  Newman and Ghaziuddin(author of the original 1991 study concluding there was no relationship between ASD's and crime), in the journal of autism and developmental disorders, stated that there was a relationship between some forms of autism with premorbid psychiatric conditions and certain violent crimes (I have not read this article, but the reports on it).

Psychologist Matt Lerner writes about how theory of mind, impulsivity and other problems may in fact be related to violent crime in some (emphasis added) autistic individuals.

Though the research in this area may have its limitations and not come to any definite conclusions, it would suggest that there is a small subset of persons on the autism spectrum who are predisposed to violent acts, including mass murder.  Part of the reason for this may be comorbid psychiatric conditions such as schizoaffective disorder, depression, bipolar, and other things that accompany some of the many forms of autism.

To answer Andrew Solomon's question.  Diabetes and pattern baldness are not brain conditions that affect behavior, autism is.  There is no comorbidity with mental disorders documented in diabetes and pattern baldness the way there has been in autism.  It's another neurodiversity comparison between apples and hurricanes.  

The neurodiversity movement often try to separate comorbidity from autism, saying that the seizure disorders that accompany autism are separate from the autism itself.  We should just regard this as epilepsy and not part of the individual's autism.  Even if the research proves that some mass murderers have a form of autism with comorbidities, they will state that it is these comorbidities that are the culprit and not the autism per se.  However, I believe when epilepsy and comorbidities exist they are all a part of one brain disorder with the autism being one symptom.  I don't believe you can separate one from another.  They are all part and parcel for the course.  Therefore, I suspect it is likely that in a small number of cases (though not the vast majority) there is an association between murder and autism.  I concede that further research may have to be done to completely validate that conclusion.  However, I don't think it is helpful for members of the ND movement and others to claim there is no association whatsoever between autism and murder when at least some scientific evidence would seem to contradict them. 

Does new genetic study refute the tenets of neurodiversity?

The main belief of the neurodiversity movement is that autism is a naturally occurring genetic variation.  The differences in the brains of autistic persons versus those of  "neurotypicals" are no more significant than differences between blondes and brunettes.  A common belief is that numerous genes in small amounts accrue certain evolutionary benefits but in large amounts cause autism.  According to Simon Baron-Cohen and Temple Grandin the reason autism has stayed in the population despite the fact that autistic people usually don't have children is that it  has traits that are adaptive and have evolutionary value.  For example attention to detail as measured by the embedded figures test, high scores on the block design test and pattern recognition.  Grandin has gone so far as to say that we'd all be cavemen if it weren't for autism genes.

New research from the Cold Spring Harbor Laboratory in New York would seem to refute that contention.  The scientists found that a number of cases of autism to be caused by rare genetic mutations in vulnerable genes.  These mutations were spontaneous, and due to the fact that autistics rarely reproduce these mutations don't stay in the population.  In some cases, they were transmitted by the mother who was less vulnerable to the mutation and did not become autistic.   Here is the study in its entirety in case anyone is interested in reading it. I read it, albeit with limited understanding, not being a scientist.

The scientists used a databank from the Simons Foundation that included multiple families with one autistic child.  Of course, one limitation is that they did not study multiplex families in which more than one child has autism.  This is not an uncommon occurrence as siblings of autistic children are far more likely to have autism than a child in the general population.  With fraternal twins it is more likely than in siblings.  In identical twins there is an even higher concordance rate, though not 100%.  Gadfly wonders if different results would be found for families with more than one autistic offspring.  Is it possible they have different genetic mutations or environmental causes for their autism?

Even though my father is a retired engineer and the prevalence of autism among children of engineers and physicists may be higher than in the general population, this makes some sense in my case as there is a history of mental illness, depression, ADHD, learning disabilities and probable autism in my mother's side of the family.  It's possible my mother carried some sort of genes that did not affect her because being a female provided some order of protection and they were passed down to me.  My non-autistic sister may have been afforded the same protection by virtue of her femaleness.

Another point of contention is how much of this is 100% genetic or just a predisposition with environmental causes?  The fact that fraternal twins are no different genetically than regular siblings, yet have higher concordance rates suggests a environmental factor.  Likewise with identical twins who are nearly the same genetically yet don't have a 100% concordance rate.

This would seem to refute the contentions of the neurodiversity movement that autism is the result of naturally occurring random genetic mutations that have evolutionary benefit and thus have stayed in the population.  Of course, I might be going wrong somewhere due to my lack of scientific knowledge and training.

It would also refute the contentions of the anti-vaxers or others who believe something else in the environment, such as pesticides and ultrasounds have caused a widespread autism epidemic and that genetics plays a limited role if any at all.  They say there is no such thing as a genetic epidemic.  That the prevalence would not have gone from 1 in 2500 to 1 in 68 just due to some de novo genetic mutations.  The explanations of some that I have read is that this study was financed somehow by big pharmacy who wants to cover up the fact that they somehow caused the autism epidemic.

I suppose the neurodiversity movement also has an explanation for what is wrong with this study and why the common genetic variation is correct and the limited number of genes that are vulnerable to de novo mutations that disappear from the gene pool have nothing to do with it.  I await their explanation.

Steve Silberman's bizarre take on Kanner's work and influence in the field of autism

Steve Silberman’s book, Neurotribes,  soon to be number eight on the New York Times bestseller list, is now the hottest news story and commodity in the world of autism.  He’s been lauded by the New York Times, NPR, and other media outlets for meticulous research on the history of autism and how it relates to what’s going on today. 

One of the underlying themes of Silberman’s book is that autistics were underdiagnosed in the past, until Lorna Wing’s work changed the world view of autism, resulting in higher rates of diagnosis.

Silberman cites Leo Kanner, the person credited for first discovering the syndrome of autism in eleven children he saw over the course of some years during the late 1930’s and early 1940’s, as  the culprit.  His reasoning is that Kanner, who first gave the condition of the children he assessed a name had a very restrictive criteria for diagnosing autism.  His definition was those of lower functioning autistics as opposed to Asperger’s, Frankl’s, and later Wing’s more expanded definition which included people more mildly on the spectrum.

One of Silberman’s tenets is that many people who should have received an autism label were denied appropriate services and supports that could have helped them cope because of Kanner’s parsimony.  This also lead people not to embrace the neurodiversity model of autism in which services and accommodations can solve or at least mitigate problems but instead look for causes and cures.  Silberman writes:  In real world terms being locked out of a diagnosis often meant being denied access to education, speech and occupational therapy, counseling, medication, and other forms of support For undiagnosed adults, Kanner’s insistence that autism was a disorder of early infancy meant decades of wandering in the wilderness with no explanation for constant struggles in employment, dating, friendships and simply navigating the chaos of daily life.  While by building foundations of a society better suited to its need and interests. After stating this, he goes on to subsequent chapters in which he alleges various ham radio operators and very prominent people in the IT field are autistic or have or had autistic traits. 

He makes numerous talking points in his book, interviews and blog posts to support this allegation.  He writes about Leo Rosa (Son of neurodiversity proponent and one of the authors of the thinking person’s guide to autism), a boy on the lower end of the spectrum, stating that Kanner’s influence still prevailed by the time this boy, not born until the twenty-first century by the time he was diagnosed.

Silberman posts the following comment on the Marginal Revolution blog:

The most significant and obvious way in which Kanner’s understanding of autism was monolithic is that every patient described in that paper is a child. Kanner’s model of autism did not include teenagers and adults. That’s not exactly his fault — he was a child psychiatrist. But the exclusion of teenagers and adults from autism was an omission of Kanner’s that Lorna Wing went on to fix with the invention of Asperger’s syndrome (Wing, “Asperger’s syndrome: A clinical account, 1981) and the broadening of the criteria to include all age groups (as well as the expansion of the lay concept of autism to include adults that followed “Rain Man.”) And note: even in that 1943 paper, Kanner makes the surprising assertion, “There is no fundamental difference between the eight speaking and the three mute children.” That’s overlooking a lot of heterogeneity for the sake of delineating a category. Lorna and Judith Gould originally felt that “Kanner’s autism” as a useful concept should be thrown away (“the findings of the present study bring into question the usefulness of regarding childhood autism as a specific condition” – Wing and Gould, 1979); but they ended up compromising and creating the image of the spectrum, which echoed Asperger and Georg Frankl’s concept of the autistic “continuum” that included children and adults.

In his book, Silberman states that Kanner would have excluded an individual that his colleague George Frankl (allegedly formerly Asperger’s colleague) had written about for an autism diagnosis because he had the genetic condition tuberous sclerosis.  He writes that epilepsy was also a basis on which Kanner excluded diagnoses of autism.  Silberman quotes writer Adam Feinstein, author of “The History of autism”, as stating he’d only seen 157 cases of autism by 1957 and that Bernard Rimland had stated that Kanner told him he’d excluded nine out of ten people that other doctors had referred to him for a possible diagnosis as being autistic. 

Before examining these talking points, here is Kanner's original article He also followed the cases into adulthood nearly thirty years later.

In actuality, there was a wide range of functioning between the eleven children whom Kanner (and perhaps George Frankl and others) evaluated.  Eight out of eleven of them had speech and could carry on semi-normal conversations.  Silberman, to bolster his argument, quotes Kanner as saying “There is no fundamental difference between the eight speaking and the three mute children.”  However, he omits the first part of this sentence.  As far as the communicative functions of speech are concerned, there is no fundamental difference between the eight speaking children and the three mute children.  Silberman then talks about Kanner’s description of some of the eight speaking children and how Kanner emphasizes their speech deficits, but neglects to cite the parts of Kanner’s 1943 paper where he emphasizes some of the instances of speech in the so-called mute children.  So, it was only in terms of speech, citing both the idiosyncratic speech of the eight milder children and some instances of speech in the more severely afflicted three cases.

Kanner’s first two cases, Donald and Fredrick, would be considered high-functioning even by today’s definition where a high percentage of autistics are still considered to have intellectual disabilities.  Alfred, one other case had an IQ tested at 140.  Even one of the mute chldren, Virginia, scored 94 on the Merril-Palmer nonverbal IQ test and the testing psychologist stated that this was likely an underestimation of her intelligence.  Some of the others would be considered more severe so there was a wide range between Kanner’s cases.     

Kanner ends his paper by stating that autism may be more common than it appears as well as emphasizing differences between the kids:  The eleven children offer as to be expected offer individual differences in the degree of their disturbances.  But even a quick review of the material makes the emergence of a number of essential common characteristics appear inevitable.  These characteristics form a syndrome not heretofore reported which seems to be rare enough yet is probably more frequent than is indicated by the paucity of observed cases. 

In spite of Silberman’s allegations, Kanner seemed to have been far more prescient than almost all of his successors to date as far as taking an interest in adult autism.  In the first paragraph of his 1943 paper he writes:  Since none of the patients has obtained an age greater than eleven years this must be considered a preliminary report to be enlarged upon as they grow older. 

Kanner indeed kept his promise, publishing a follow-up paper on his eleven charges in 1971 when he was well into his seventies.  He first reports on Donald T, who has done relatively well in spite of his autism, obtaining a college degree and working as a bank teller and would certainly not appear to be low functioning as an adult.  He reports on Frederick W who worked at the national office of air pollution and was lauded by his supervisor.  Another individual, Herbert, though still mute worked on a farm and carried out useful tasks. 

Though he states a patient of George Frankl’s who had tuberous sclerosis and epilepsy would not have been diagnosed by Kanner on that basis, Silberman neglects to provide any documentation for this in his copious endnotes.  This certainly is not true as Kanner child number ten, John F. did in fact have epilepsy and a focal abnormality in his left occipital lobe on an EEG which Silberman did not mention in his book.  Elaine (case 11) also went on to develop epileptic seizures.  However, this started in her twenties as reported in Kanner’s follow-up article and it is unclear whether or not her epilepsy was known in the 1940’s when Kanner first wrote about her. 

Did Kanner regard autism as necessarily being rare in the 70’s?  Based on one comment he made in the follow-up article, the answer would appear to be no:  It is well known in medicine that any illness may appear in different degrees of severity, all the way from the so-called forme fruste to the most fulminant manifestation. Does this possibly apply also to early infantile autism?
Kanner wrote this in 1971 at least a few years before Lorna Wing’s and Judith Gould’s attempt to find more people with autism and consider it a spectrum that Silberman alleges.

Autism wasn’t even classified as a category in the IDEA until 1991 which is also correlated with the huge spike in diagnoses.  Services for children weren’t widely available until then.  One of the few things Silberman gets right is that no one really cares about the problems of autistic adults.  This is nothing new in spite of the fact that Kanner, going back to the nineteen forties actually did take an interest in his patients as adults and followed them for nearly three decades.   

It would seem that blaming Kanner for this is indeed a stretch.  This historical perspective on Kanner’s work may serve the purpose of helping Silberman score points for the neurodiversity movement, but really does not seem to me to accomplish anything else.  This is aside from the fact that it is plain inaccurate.

  It is unlikely that any of the reporters from New York Times or NPR or any other media outlets that have publicized his book have ever read Kanner’s original paper in addition to his follow-up and most likely ever will.  No one of any importance will ever realize what Kanner really said and did in spite of Silberman’s spin on this work.  

My unprinted letter to the l.a. times regarding Steve Silberman's op-ed piece on autism speaks

Over a week ago, Steve Silberman, author of "neurotribes", wrote an op-ed piece which was published by several newspapers including the Los Angeles Times.  I wrote a response that was not printed:

To the Los Angeles times:

As a man on the autism spectrum, I must take issue with Steve Silberman’s op-ed piece.  The type of funding that he suggests will do nothing to help autistic people.  It is not a disability that can be accommodated through education or other means.  There is no way that research dollars will be able to help with employment issues. 

Though science may provide no short-term answers, I believe in the long term that funding of scientific research will someday lead to viable treatments and possibly a cure, so I hope it can continue. 

Mr. Silberman makes numerous factual errors in his article.  Though he stated no autistic persons have served on autism speaks boards, John Elder Robison was on the scientific advisory board.  He is a high school dropout with no qualifications or knowledge in the field of autism science.  His appointment was only to quell all the noisy people who insist that autistic people must be on the boards of autism organizations in spite of lack of qualifications. 

Bob and Suzanne Wright never referred to their grandson as being missing.  The missing slogan only referred to missing knowledge of the genetic etiology of autism. 

Silberman has only spoken to autistic people on the mildest end of the spectrum and has completely ignored people who are nonverbal, wear diapers in adulthood and self-mutilate.  It’s shameful that the times would print the op-ed piece by this man whose forthcoming book will undoubtedly trivialize this horrible disability.  

Jonathan Mitchell, Los Angeles, California 



One point of correction, I sent them this email before Silberman's book came out and I read it. He did spend time with Leo Rosa, Shannon Des Roches Rosa's son, who is at the lower end of the spectrum so I suppose the statement he only spent time with higher functioning autistics might not have been completely accurate. But most of the people Silberman has spent time with were on the highest end of the spectrum.

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. 

Is Ari Ne'eman qualified to give input on autism research?

In a recent interview with the simons foundation , Ari Ne'eman advocated for having autistic persons give input on research into autism. We already have the interagency autism coordinating committee which is packed by members of the neurodiversity movement who claim to be on the autism spectrum yet apparently have little or minimal disability.   To date, not a single pro-cure, anti-neurodiversity person on the spectrum has been appointed to this board.  John Robison has served on various research committees in an advisory capacity and stated he was on the board of the CDC's ADDM, which tracks the prevalence of autism in the U.S.  He also claimed that he was asked by the Harvard TMS group to assist in formulating the TMS experiments they did in which he was a research subject.  This is in spite of the fact that he dropped out of high school in the tenth grade.

In the article, Ne'eman mentioned that as African Americans and Hispanics are involved in research in the problems these groups face that this should apply to persons with autism (Gadfly is not using first person language that ND's insist upon)  Gadfly feels this is a bad comparison as race does not disable a person as autism does.

He also mentioned that there are deaf people who participate in research on deaf people.  What about other medical conditions?  Do diabetics insist that they give input into scientific research on diabetes, even if they're not formally trained molecular biologists.  Do people who've had infections sit on FDA boards and decide which antibiotics should be approved?  Though Stephen Jobs was a brilliant man who accomplished much in his life, he didn't spend time giving input on cancer research.  Why is autism different?

Ne'eman has a bachelors degree in political science.  Though far more educated than John Elder Robison, Gadfly wonders what he knows about research methodology, statistical analysis and what other qualifications he has to analyze or interpret statistical data.  One of the lines from the Simons Foundation article is particularly interesting:

The goal is to boost the research’s real-world impact by getting input from those most affected by it

Does this mean that Ne'eman is qualified.  As far as I can tell, Ne'eman's only current disability is that he's overly sensitive to velvet texture.  Other than that, I don't understand how he is disabled let alone being one of those most affected by autism.  According to this sentence, only people who are completely nonverbal, have IQs less than 30 and are still in diapers and under some sort of institutional care are the only ones who should be giving this input to the government.  Will Ne'eman include these?  Is this who the government is going to put on the IACC and on these scientific advisory boards next?  With all the crazy things that the government has done with autism, I suppose nothing should surprise me. 

The Autism Job Club: Don't judge a book by its cover

I just found out about a new book called The Autism Job Club on a post on The Age of Autism.This book is promoted there and elsewhere as a book that can actually help people on the spectrum find jobs.  As soon as I found out about this book, I felt I had to go to the local bookstore and purchase a copy and read it.  I spent a good portion of my day yesterday doing just that. 

One of the authors has an autistic son now in his early twenties and writes about the frustration in helping his son find work.  He also talks about an actual club of jobseekers in the San Francisco area where people on the spectrum brainstorm about employment strategies.  None of the clubs members have actual jobs but most of them have their own businesses which appear to be floundering.  Two people have a handyman business, one female member has a pet sitting business, etc. 

After his son was fired from multiple jobs, the author finally found someone sympathetic to people on the spectrum who employs his son part-time as an office worker and apparently does not mind that he makes excessive mistakes, something Gadfly is skeptical about.

The book also mentions certain members of the neurodiversity movement and seems to have a somewhat pro-neurodiversity attitude.

He talks about places such as Wal-Mart and Best Buy who have made an active effort to employ autistic people.

Also mentioned are Specialistirne and other startups that were designed to employ autistic people.  Interestingly, the author writes about how Specialistirne was subsidized by the Danish government  and how they tried to start up in the USA, funded by a grant, but couldn't get anywhere.  Other software testing firms that started with the intent of helping autistic people work faced similar challenges. 

The book talks about the stereotypes of autistic people having strong attention to details, having technical, math or computer aptitudes but at the same time, gives examples of people with autism who are fired due to making excessive errors due to poor concentration as well as the problems with the tech firms I discussed above.  They also say that autistic people might make good employees because of loyalty but don't show any evidence that this is anything more than a stereotype. 

They also discuss the jobs that Freddie Mac has offered through the autistic self advocacy network's influence.  However, these are for all very high functioning autistics or members of neurodiversity who are possibly self diagnosed at least in some cases. 

Other than disclosure, the book really offers no solutions to help autistic people find and keep work.  The one time I tried disclosure it did not help me.  Other jobs I have kept for a while without disclosure.  I don't believe disclosure is very helpful.  It might be hard to avoid in some situations, but I don't believe it will really make a difference in helping an autistic person find and keep a job.  If the person has problems that make them an unsatisfactory employee, behavior or excessive errors, it is not going to make the employer sympathetic and want to keep them on.  If you disclose your disability at a job, it could well prejudice you. 

The book also gives some dry and technical minutia about the employment markets and changes that have nothing to do with autism. 

The lessons or moral is really that there are no easy quick fix answers to the problems of unemployment among autistic people and that you can't judge a book by its cover. 

The Rise and Fall of Wrongplanet.net

Wrongplanet.net is a website started in 2006 that grew by leaps and bounds over a several year period.  At one time they stated in their titlebar that autism equals good.  They've also banned certain members, including your humble blogger, who wrote posts disagreeing with tenets of the neurodiversity movement or making statements that having an autism spectrum disorder might not be such a good thing after all.  The members seem to have a penchant for abuse and name calling of those whose opinions are different from theirs.  Your humble blogger has been labeled a minimally educated sociopath, an asshole, and an intellectual lightweight and other names by some of the denizens of this august URL.

The website has also been mired in controversy from time to time.  First there was the William Freund case where he posted that he was going to hurt someone and apparently Wrongplanet neglected to notify authorities and he killed two people.  There was also another member, Hans Peterson, who went out and murdered his dermatologist.  Another member named "Cephalopod" indicated that he might go out and shoot and murder as many neurotypicals as he could.  After being reported to the FBI, he was apparently interviewed by authorities in Switzerland where he apparently resided.

Some of the members were appalled when the founder Alex Plank accepted funding from their nemesis Autism Speaks for his now defunct Autism Talk TV series.

Gadfly wonders if this could have affected Wrongplanet.net's traffic.  Perhaps it has.  Yuval Levental, one of my readers, has alerted me to the fact that the WP's traffic has actually significantly declined in the past two years, as shown by the stats on this website.

Yuval has apparently pondered this also and wondered how a typical reader of wrongplanet.net might view the situation.  He created this rather amusing tongue-in-cheek video that might better explain the situation.  I wanted to embed the video here, but was not able to do it where it included the subtitles that Yuval added.  But you can view it from the above link. 

Autistic self advocacy Network's new fundraising campaign

I see that the Autistic self Advocacy Network has started a new fundraising campaign. They give the potential donor three choices of causes to donate to.

The first is an autism campus inclusion summer leadership training program.  The apparent purpose of this is to train and indoctrinate college students in organizing others to spread the neurodiversity message.  The Mitsubishi corporation has already funded this endeavor of ASAN's in the past.  According to a post written by The canary party, an offshot of the anti-vax movement and one of the few organizations that actively opposes the neurodiversity movement, having a formal diagnosis of autism is not required for a college student to participate in this program. Only self-identification of being on the autism spectrum is required. We also have this announcement of the program by ASAN a few years back where they stated:  
This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger's Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training.

   Gadfly is intrigued by the words who identifies.  Does this mean that any Tom, Dick, or Harry (or Harriet) can just diagnose themselves with autism and be eligible for the program?   There have been some questions in the past as to whether or not some of the more prominent members of ASAN are self-diagnosed.  One of the commenters on this blog claimed that Paula Durbin Westby told him in 2007 that she was self-diagnosed.  Of course, I have no way of verifying this claim or any other allegations of members of ASAN self-diagnosing themselves, however, this program seems (at least to me) to suggest that there is evidence that ASAN does in fact encourage self-diagnosis.

The second choice is to donate to ASAN's Policy advocacy arm.  Here they are trying to encourage policy against restraint and seclusion, discrimination in organ transplantation and paying subminimum wage to disabled people.

Though restraining and secluding autistic children may sound like a rights violation, it is actually for their own protection.  There have been several reports of autistic children wandering and being hit by cars and accidental drownings.  ASAN does not seem to care or have any alternative for preventing these tragic deaths, except to claim that if neurodiversity were implemented, we could find out what is causing children to wander and deal with it.  Of course, they provide no evidence of this.

As far as organ transplantation is concerned the sad truth is that there are only a finite number of hearts, kidneys, etcetera to go around and the demand for organ transplantation exceeds the supply.  If every autistic person who needed a new heart or kidney was granted one, some other person would be denied and they would die.  This could be an example of reverse discrimination.  In order for organ transplantation to be effective and save or prolong the life of the recipient, a strict regimen of medication, diet, etc. must be adhered to.  Sometimes a disabled person might not be able to do this and they'll end up dying or wasting the organ that could have gone to someone else who would follow the regimen and be able to best utilize this scarce resource.  From what I've read cadavaric transplantation may be underutilized, but I don't see Ari Ne'eman crusading for this.  One of the problems here is that the hospital or ethics committee who rejected the candidate for transplantation is barred by the HIPPA law from telling their side of the story as it would violate patient confidentiality.  I wish there were a solution where every person who needed an organ transplant could get one but unfortunately there is not one.  Gadfly would be at the front of the line in protest, if someone were denying someone a needed life saving treatment just because they happened to be prejudiced against autistic persons.  ASAN has failed miserably (at least in my opinion) to prove that this is the case.

In terms of subminimum wage laws, most of the organizations that pay subminimum wages are 501(c)'s such as the Goodwill who are just creating makework for people with disabilities who would not have anything to do.  Getting rid of these might actually be a good thing as Gadfly is not really a fan of sheltered workshops for a variety of reasons.  As far as the profit sector goes, legally they can pay a disabled person subminimum wage, but there is a burdensome bureaucratic process the employer must go through and much paperwork and proof has to be provided to show the handicapped person is not worth $8.00 an hour (or whatever the minimum wage is).  I suspect most employers would not find this worth their while and they'd just hire a non-handicapped person and pay them minimum wage.   I might agree with ASAN that the subminimum wage law for disabled people should be done away with.  However, the problem is that if this happened, Goodwill and other organizations would get rid of the sheltered workshops and the employers would just hire a non-disabled person for the minimum wage job. It would do nothing to improve employment opportunities for persons on the spectrum.

The last program you can donate to is something that combats stereotypes and misinformation about autism being a tragedy or a burden to families.  I believe that it is ASAN that fosters stereotypes and misinformation about autistic people.  One supporter stated that those who disagree with them should be shot to death or turned into cat food.  ASAN leads to stereotypes of  autistic people being abusive bullies and hate mongers who end up insulting someone's mother if they have no other way of winning an argument.  We are not monsters but I believe ASAN makes us look like monsters.  

For these reasons, I don't believe that ASAN is a cause worth donating to and I hope anyone who reads this post will find some other more worthwhile charity.  Somehow I doubt I'll convince many people. 

Autism daily newscast publishes Gadfly

Here's an article I wrote  about neurodiversity for the autism daily newscast.

84% of ASAN's 2013 revenue goes for overhead

I've waited awhile for the Autistic Self Advocacy Network's 2013 form 990, the mandatory IRS tax form that non-profits are required to fill out and make available to the general public.  I've finally found a website that has the info.  We see that in 2013 ASAN made $452,643 in revenue.  Out of that amount $378,264 went to pay, salaries, rent and other overhead costs including Ari Ne'eman's $71,000 annual salary.  He again raised his salary, this time by about 10%.  Of course this is a far more modest increase than that of the 2011-2012 period, where Ne'eman raised his own salary 62% in one year from $40,000 to $65,000.  In spite of the fact that ASAN had a net fundraising loss in 2012 of nearly $15,000.  We see that nearly half of their revenue covered salaries, benefits and payroll taxes.  We see that they had just under $75,000 in revenue minus expenses.  It is unclear where this money is going, whether it is sitting in the bank as reserves.

In terms of ASAN's service accomplishments, they cite research making medical care more accessible to persons on the spectrum.  Far less was spent on this than on Ne'eman's salary.

They spent nearly a quarter of a million dollars on outreach and advocacy and educating people on the disabilities movement in regards to autism.  I wonder how much of this was in travel expenses to go to Autism Speaks walks and harass parents who were walking trying to raise money to try to help their kids.

The neurodiversity movement has often criticized Autism Speaks for a small percentage of money that goes to help families or services.  On the day6 radio show that Ne'eman and I were recently on, he comments on the small percentage of money that NIMH spends for adult research and services for families rather than on scientific research.

I realize I'm not an accountant on any kind of tax expert, but I'm curious as to what ASAN has accomplished or done in 2013 to help those on the spectrum.  Perhaps they are the pot calling the kettle black.  Well I linked to their 2013 statement above in case anyone's interested.

Addendum:  One thing I neglected to mention in this post is that I'm curious as to how ASAN spent $378,000 plus on overhead out of a little over $450,000 in revenue but managed to spend a quarter of a million dollars on outreach and advocacy and  nearly $50,000 on their health care program.  Perhaps there's overlap between these and the overhead expenses, I don't know.  As I said before, I'm not a tax specialist of any sort, but I'm rather curious.  It's tempting to contact the IRS and ask them to investigate this, but I doubt they'd do it and not sure it's worth my while.  But I'll keep Gadfly readers posted of any future developments.

MTV bites neurodiversity in the ass

Since my profile, which included my anti-neurodiversity activities, was published in Newsweek, neurodiversity has begun to become the topic du jour in the autism world.  In what I suspect was in response to Erika Hayasaki's article about me, The Daily Beast published an article about neurodiversity.  This article was very sympathetic to the ND movement and did not even make an attempt at faux balance.  The Canadian public radio show Day 6 interviewed both Ari Ne'eman and myself (along with a few other guests) about the subject of neurodiversity.  Autism Daily Newscast has called for articles from those on the spectrum about neurodiversity. 

Interestingly enough, MTV got into the act and also wrote a pro-neurodiversity article with no effort at balance.  This article also highlighted the #autismspeaks10 war that some of neurodiversity's more bellicose members created on twitter.  Mysteriously, the article was taken down from MTV's website provoking the ire of a variety of members of neurodiversity.  Article author Robin Lempel offered the explanation that she had tried to contact Autism Speaks to provide balance for the article and had been unable to do so. 

Part of the problem was that neurodiversity activist Amy Sequenzia basically demanded that MTV publish quotes and comments she made for the article verbatim with no editing whatsoever.  MTV neglected to do this.   This apparently made Ms. Sequenzia very angry. She also made the questionable claim that 97% of Autism Speaks money goes only to pay salaries. Yet, she seems to have no objection to the fact that Ari Ne'eman increased his own salary for running ASAN by 62% in one year and that his $65,000 annual salary in 2012 was nearly 20% of all of ASAN's assets. Not to mention of course other salaries ASAN pays and the costs of their rent and overhead with the very limited assets that they have, which, as far as I can tell, goes to nothing to help autistic people.  Perhaps this made MTV rather angry and this was one reason they decided not to keep the article on their website.

There is perhaps another reason that has been overlooked so far by everyone who has written about MTV's ephemeral neurodiversity piece.  MTV may  indirectly be in a partnership with autism speaks in the same manner as build-a-bear, Lindt chocolates and all of the other organizations that members of the neurodiversity movement have urged the public to boycott.  The Night of Too Many Stars which helped raise funds for Autism Speaks aired on the Comedy Channel.  The Comedy Channel's parent company is Viacom, interestingly the same organization that owns MTV.  Perhaps this is why they wanted a balanced article and a response from autism speaks.  Perhaps Autism Speaks fundraisers have helped generate revenue for Viacom along with its subsidiaries the Comedy Channel and MTV.

Since many members of the neurodiversity movement have urged boycotts of build a bear, Lindt Chocolate, Sesame Street and other organizations that have supported autism speaks, I wonder why in the world would they want MTV to write an article about them when it is owned by a parent company who has subsidiaries which fully support AS?

Of course, one could also ask the question of why when Google partnered with autism speaks on the genome project, why various neurodiversity proponents did not urge a boycott of Google.  I wonder how many members of neurodiversity have given up looking at you tube, using gmail accounts, and stopped blogging on blogger which is owned by Google.  I suspect not very many and I have not seen neurodiversity urge a boycott of Google.  Or why they thought it was okay for Laurent Mottron and Michelle Dawson to receive their nearly half million dollar grant from AS.  Or why it was okay for Wrongplanet.net and Autism Talk TV to obtain support from autism speaks.  In fairness to some Wrong Planet denizens though, I will concede that some of them posted frustration over Alex Plank's choice to jump on the AS bandwagon.

All I can say to  members of the ND movement is perhaps you should watch your actions and be careful of associating with organizations that support autism speaks if all you want to do is rant and rave on twitter and other social media outlets how bad they are.  Perhaps you can stop being so nasty, mean and insulting.  If you guys aren't more careful, perhaps it can come around and bite you in the ass. 

New Radio interview

Here's a link to a radio show I was on.  Ari Ne'eman and Sue Rubin were on also.  Corine Becker and Harold Doherty were more minor guests. Apparently I was interviewed before Ne'eman so he got to comment on what I said rather than vice-versa.  In that sense, the show may not have been completely balanced.  It's interesting that Ari Ne'eman hopes that neurodiversity will give me an opportunity to achieve what I want in life when I'm more than twice his age and even if there were a cure or ND were something real and not a bunch of baloney, a man nearly 60 wouldn't be able to go back in time and be able to do well in college, get a meaningful career, have meaningful social relationships and all the other stuff I missed out on when I was younger.  Well guess I won't comment further. here's the link if anyone is interested in listening: radio interview

autism live interview about my novel

Here's the portion of the Autism Live interview where I discuss "The Mu Rhythm Bluff".  There might be more than just this segment and the previous segment, but not sure, guess you'll have to type Jonathan Mitchell autism live into the you  tube search engine to find the whole things.  Or you can watch the entire February 24 episode of Autism Live but it's a two hour show and they have other things other than me.  Well here's this portion of the interview

My interview on autism live on the subject of neurodiversity

Today I did an interview on the web TV show Autism Live about my take on the neurodiversity movement.  I realize that I'm not the most articulate interviewee in the world, with the stammering and the 'you knows', but I guess that's part of my autism.  I did give it my best shot.  I'll  write about my interview about my book, "The Mu Rhythm Bluff" in the next post.

Is Specialisterne for real?

Thorne Sorkil’s organization, Specialisterne (meaning specialist in Danish) trains and employs individuals to be computer software testers.  What is unique about the employees is that they are mostly persons on the autism spectrum.  Sorkil, a former IT worker in Denmark, has an autistic son who I think is now about eighteen.  He found that his son could draw maps with great detail.  He also had calendar savant skills.  Sorkil met a number of individuals on the autism spectrum through various support groups who all related the stories of being unable to find and/or hold down a job.  Studies, such as Michelle Dawson’s, had suggested that the intelligence of persons with autism had been underestimated and they had good fluid intelligence.  Also autistics were believed to have good attention to details (as Thorkil’s son did).  A study by Patricia Howlin had showed that as many as 30% of autistics have specialized skills and talents.  This was a higher estimate than Bernard Rimland’s survey showing merely 10% of autistics have savant skills of some sort.  This inspired him to start Specialisterne where persons on the autism spectrum do IT work.

The concept really hit home for me.  As most regular readers of my blog know, during the approximately twenty-eight years I was in the workforce I had tremendous problems at jobs.  These included conflicts with employees and supervisors and often not being able to do the work without errors.  An organization that can effectively employ autistic people and provide them with a good income was something that interested me.
His organization has received widespread media attention from the new york times as well as Forbes magazine .  Is this organization the salvation for unemployed autistic people or could it be not all the media has cracked it up to be?

One of the media’s talking points in their stories of this organization was that autistics not only had good attention to details but had superior accuracy.  I know this was not true for myself.  This made me skeptical of Specialisterne’s legitimacy and whether or not they were really helpful to persons on the spectrum.

Other dubious assertions were using Michelle Dawson’s research to show that autistic people could effectively work as software testers.  The control group in her study was not neurotypical, but had average Wechsler IQ’s of 70th percentile.  A group in the 70th percentile is not typical of anything.  No other researcher had replicated the magnitude of the differences in autistics between the Wechsler test and RPM’s her study found.  Sven Boelte found a difference between RPM and Wechsler but it was not of the magnitude of Dawson’s and was only limited to lower functioning autistics and not persons with higher functioning autism and asperger’s who are whom Specialisterne employs.  Kim Bodner also failed to find an effect for high functioning autistics.  The attention to details, as measured by embedded figures test seemed to be debunked by psychologist Sarah White, particularly for higher functioning persons.  Darold Treffert wrote in Islands of Genius that Howlin’s 30 percent figure was likely a very liberal definition of savantism and an overestimate.  

The biggest eyeroll of all was reading that Specialisterne was largely subsidized by the socialist government of Denmark.  When he set up shop in the u.s.a. in the state of Delaware, he received grants of $800,000.

All of these made me question whether or not these were real jobs and they were geniunely helping those with autism.

This is why I was interested when a couple of days ago I received a comment to a a post  I wrote over two and a half years ago where I discussed these very issues.  From a woman named Katja Worm who said she was from Denmark and had been a former employee of specialisterne said:

Hello, my name is Katja Worm. I'm an 35 year old woman and a former employee at Specialisterne in Denmark.
I just wanna say you're right about everything you wrote in your blog. I share your opinion. I really do.
You can't run a business by using this method. And you can't demand an amount in that size, and just believe that the government and the social services will pay it. It's not gonna Work in a long run. You have to make Money by yourself from selling a product or something like that. And they're not doing something like that at Specialisterne. They have some contact with other Companies, but the Company is staying in business by getting Money from the government. It's not okay. It's a scam.
During that same time, I was working there, it didn't seem like anyone got a real job.
All we were doing was sitting and playing with a cell phone and talk to a psychologist. It doesn't have anything to do with creating a career in the business World. The employees were not affective at all. They were only doing one assigntment which took them all day to finish.
The employees didn't get any professional training in social skills either. They were allowed to show their autistic behaviour in public by sitting and do rocking and spinning movements with their body, which is a classical sign of autism. If they're showing this strange behaviour at a Work place, it's no Wonder, if they can't keep a job.

Ms. Worm didn’t leave a link of any kind.  She just posted as anonymous.  I have no way of verifying if her claims are real but it is food for thought.  Is Thorne Sorkil an emperor with no clothes?

Newsweek gives Gadfly equal time more than five years later.

Old time readers of Autism's gadfly may remember when a newsweek article about Ari Ne'eman and neurodiversity came out.  In response to this, I asked Newsweek to give me (or some other pro-cure person on the spectrum) equal time to rebut what Ne'eman said.  I was further dismayed when journalist Claudia Kalb questioned why anyone would be opposed to Ne'eman's nomination to the NCD.  This particular article generated some controversy when I got some inside info on it from a reliable source telling me about it  before it was actually published.  I blogged about it.  Angry anti-neurodiversity blogger John Best also blogged about it with the inflammatory headline "Ask Newsweek to Kill Ari Ne'eman"  When a commentor on his blog stated he felt the title was inflammatory, Best stated that he was not asking anyone to actually go out and shoot Ne'eman, but he believed that Ne'eman's activities were criminal and he hoped that the neurodiversity activitist would be prosecuted, convicted and executed.  This created a hornet's nest among the ND movement, who distorted the facts and claimed that Best actually threatened Ne'eman with death.

I'm happy to report that in the better late than never department, Newsweek has given me equal time I won't comment further except to say I'm glad they are willing to let voices of those on the spectrum other than those who believe in neurodiversity be heard.

happy anniversary to Gadfly

Just now, I was looking at jonathan's journal, the short lived predecessor to Autism's Gadfly, and I noticed that the date that I moved my blogging activity here was January 18, 2008.  This means that yesterday was the seventh anniversary of this blog.  I've never blogged about an anniversary before and I suppose seven years is not a milestone like ten years is, but I was still thinking about all I've been through since I created this blog.  When web developer Tim Boucher heard my studio 360 show on NPR, he was duly impressed with my interview and offered to build me a website free of charge at the end of 2002.  It had this journaling section without the ability to post comments that was a less sophisticated version of blogger, but powered by Blogger.  Twelve years ago, blogging was still something very new and I was not sure what to do with the journal section.  Eventually, I ended up posting a few things.  I wrote a rough version of my article, Neurodiversity, Just Say No, which I made into a whole article later.  Harold Doherty was nice enough to give the article a shout out on his blog.  This drew the ire of some members of the neurodiversity movement, particularly Michelle Dawson who stated that she wanted to comment on the article, but I had no comments and she alleged that Harold did not allow her to comment on his blog.  Other people seemed to be concerned that I was something of a chickenshit because I would dare write polemic on the internet without allowing people to refute my notions in a comment section.  I'd seen other blogs such as the now defunct Autism Diva and Harold Doherty's.

I decided to move my blogging from Jonathan's Journal to a new blogger blog Autism's Gadfly seven years ago yesterday for this reason.  I knew about personal attacks so I decided to add comment moderation.  Michelle Dawson then engaged in an angry rant, declaring that because I was opposed to neurodiversity this meant I was opposed to human rights.  Because I moderated comments, she stated that she would never comment on my blog as apparently I'd delete any comemnts she made that disagreed with mine.  I turned off the moderation and offered to allow her to comment, but she declined.  After leaving comment moderation off, I began to get vicious personal attacks from some of the more unsavory members of ND.  I deleted a long verbose comment by one individual who was rude and who threatened to make my life miserable and irritate me.  He continued to repost the comment after I deleted it, so I decided not to let Michelle Dawson (and others) dictate my life so I have enabled moderation.  I still publish most comments, even those that vehemently disagree with me and are sometimes nasty.  Some people seem to be dedicated to harassing me because they don't like my anti-neurodiversity pro-cure message and a few of them went over the line and I banned them.

I've seen a number of blogs come and go over the last eight or nine years or so.  Autism Diva, Natural Variation, Whose Planet is it Anyway.  Now I'm saddened that MJ of the Autism Jabberwocky has decided to retire.  I've still kept going all these years in spite of all the harassment and personal attacks and even libelous statements that I've had to endure from some of the nastier members of neurodiversity.  I know they read this and I want to tell them (or anyone else) if they think their bullying is going to shut me up they are sadly mistaken.

I keep saying that I might give up blogging or even greatly curtail my activity or take a hiatus, but I seem to want to keep on going.  I've wanted to learn more about the science of autism, read more journal articles and become much more erudite than I am already before writing autism nonfiction.  But I guess I still feel compelled to write stuff on the internet.  Though I still blog, my input has decreased somewhat over the years and I don't know when I will be compelled to write stuff, but I guess I play it by ear and wing it.

It's been a rather interesting seven years, not sure what the next seven years holds for me, but I realize the prognosis has never been good for people with autism, even those as mildly affected as I am.  As I approach the milestone of age sixty, I realize things did not turn out in my life the way I had envisioned and hoped, and it has been a tremendous disappointment to say the least.  However, I just wanted to give a shoutout of my seven year anniversary.  Happy anniversary to me.

Neuroscienist Manuel Casanova calls out the Neurodiversity movement

Nowadays it seems not only do very few people want to take the neurodiversity movement to task, but in fact many support it.  The autism society of America had Alex Plank as its keynote speaker.  They endorsed Ari Ne'eman's appointment to the NCD.  Autism Speaks has had high school dropout John Elder Robison on their scientfic advisory board.  Their coffers have served as ATM machines to Laurent Mottron, Michelle Dawson, Isabelle Souleries and probably others who believe in neurodiversity as well.  The federal government has appointed five anti-cure spectrumites to the IACC and zero pro-cure autistics, though Roger Kulp has expressed a desire to serve.  John Robison has sat on committees deciding how to do autism research and what studies to fund, though he does not even have a tenth grade education.  In a great insult to rationality this man also has a professorial title at William and Mary College.  The entire united states congress changed the name of a law just because the ND's didn't like it/

That is why I am so happy when anyone of prominence in the autism world is willing call these people to task. Dr. C is troubled as I am at the power and influence these people have wielded as of late.

Ironically enough, Dr. C poses the following question:  Do they believe that the inability to get or hold a job infers a flaw in that person's character?

I'm reminded of the  
words of retired neurodiversity blogger "The autistic bitch from hell"

These people are truly pathetic. They have been called weirdos and dummies all their lives, and deep down, they believe that's what they are. They cling to their autism diagnosis like it's a security blanket that protects them from ever having to take responsibility to improve their lives. They reflexively oppose any efforts by autistic activists to raise the issue of employment discrimination because they fear that they will lose their disability payments if other autistic people get jobs. They will grovel at the feet of any bureaucrat who can give them a benefit check, pat them sweetly on their incompetent little heads, and reassure them that they're not to blame for any of their failures because their poor defective brains weren't capable of anything better.

So, if this is the opinion of mainstream neurodiversity, the answer to Dr. C's question would appear to be a resounding yes.  This person has been rumored to be Meg Evans, who with Ari Ne'eman, cofounded the autistic self advocacy network, the premiere neurodiversity organization, some of whose members have power and influence in the government and have persuaded members of congress to write false statements to the secretary of HHS and others to get what they want.  Apparently these congress people and their staffs are either too slothful to even do the most rudimentary fact checking or perhaps they are members of ND themselves and are opposed to ending this horrific nightmare which affects so many of us.

Unfortunately, Dr. C seems to have a friendly relationship with John Robison and seems to think this individual has something useful to offer the autism community and that is unfortunate.  I won't comment any further.  I'll just let Dr. C's post speak for itself.   I hope as many people as possible will read it and take it to heart, though I doubt few people will.

To me, the word 'neurodiversity' is just as offensive as the word 'retard' the n word for blacks and the F word for gay people.  I think the rhetoric of the autistic bitch from hell speaks for itself.

I only wish more people would call out this horrid movement.