Thursday, October 29, 2015

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. 

Monday, October 12, 2015

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. 

Wednesday, September 23, 2015

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.

Friday, September 4, 2015

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.  

Thursday, September 3, 2015

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.

Wednesday, August 26, 2015

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

Steve Silberman's neurotribes has just come out and is getting a lot of media hype and so far it's a huge commercial success.  I've been waiting for years to read this book and now that I have I can blog about it.

First off, I said that I wouldn't judge a book by its cover though I did have some expectations as to what it would be based on the company the author keeps and the variety of things that he's written on the internet.  I'd like to say I couldn't help having some preconceptions about the book and I have to concede that they were at least partially wrong.  It was not the neurodiversity preachathon that I expected it to be nor did promoting the assortive mating theory play a prominent role in the book which Silberman wrote about in his Wired magazine article.  Nor was it as offensive as I'd thought it would be.  Though some parts of the book were offensive and there were plenty of other problems with it (which I'll get to in due course) that merited a one star review on amazon,   Now that I've admitted some of my prejudgements were wrong, I'd like to write some commentary on the book that I could not cover alone in my scathing one star review.

Though Silberman's writing was very readable, the book was arthritic tortoise in its pacing.  Silberman writes a lot of minutiae and back story in each segment which was extremely plodding and made for some dull reading and took an eternity to really cut to the chase of his topics.  It was also very verbose and I believe a good editor (which apparently he didn't have at avery penguin or in the process of writing the book) would have cut it by about 50% as he could have expressed ideas in about half the words he wrote.  The writing is also very verbose and long-winded.  The book is also poorly organized as it flits from one arcane topic to another with no arbitrary order he goes from talking about Wakefield or Rimland for a while (giving superfluous backstory on each subject that causes the book to drag) then out of the blue goes on to nonsequiters about IT individuals and what they did with computers which would seem to have no relevance to the subject matter, except he wants to imply that these persons are autistic or at least have autistic traits and goes on about these people.

He first writes about the refrigerator mother theories of the etiology of autism that were espoused by Kanner, Bettelheim and other lesser known individuals (including my own psychoanalyst).  He writes from the perspective of how historically undesirable they are and then tries to suggest that we've evolved to neurodiversity which is more desirable.

I'm curious as to whether or not Silberman could have interviewed a middle aged adult who had actually experienced this era first-hand.  I personally fit this bill.  As I've written before on this blog, I was in psychoanalysis for more than ten years by a therapist who studied under Anna Freud who suggested among other things that the etiology of my autism was due to castration anxiety, due to the fact that I had a younger sister and I must have seen her nude and noted her lack of a male organ.  She stated I believed I thought my parents planned to be like Lorena Bobbit and this was in part the cause of the etiology of my problems.  This was also traumatic to my parents.

Ironically, though the author implies that in the twenty-first century, we've evolved from this bad history to the concept of neurodiversity which he embraces wholeheartedly not only in this book but in various other places on the internet as well in the five years he spent writing this treatise.

The truth is neurodiversity is in part a twenty-first century incarnation of this sad period with some of its less savory members saying the reason I'm depressed over my autism is that I had a horrible domineering mother who taught me to hate myself.  Others have said this is where my disability from autism comes from.  A few of these people have called my mother a witch and a yapping shrew.

Others have not resorted to name calling but in the case of John Elder Robison have stated that parents might want to do a treatment just for their own convenience and not to help their child as he stated on Harold Doherty's blog.  Others have equated a cure to intolerance, others have said that autistic parents don't give a f*** about their children and wish they'd drop dead.  Others have equated parents of autistic children or certain charitable autistic organizations with the Ku Klux Klan and parents of autistic people as akin to members of the KKK who are forced to raise black children.  These include IACC member Noah Britton.

Silberman also does not come right out and say that Henry Cavendish and other notable scientists had autism, but certainly implies it and if you read between the lines implies autistic type thinking was responsible for many scientific discoveries and inventions.  He is not a clinician and Cavendish died nearly 150 years before he was born, so i'm rather perplexed as to how the author can come to these conclusions.  It's true Cavendish was very shy and eccentric but obviously he did not have executive functioning problems of an autistic.  

The author repeated his offensive statement (that i've commented on previously) that the difference between autism and a non-handicapped person is analogous to the difference between a linux and a windows operating system that just work differently.  A more accurate analogy would be between a working computer that runs windows and a computer that constantly crashes or has constant blue screens of death and shuts down due to overheating or having malfunctioning memory chips.

Another offensive comment is implying that the problems with autism come from oppression rather than disability as was the case with Jews at one time (and possibly still in some circumstances).  He states in this analogy that autistics are a relevant minority group as there are as many autistics as Jews in the U.S.A.  according to one source at least 2.2% of Americans are Jewish.  Even if you go by the CDC's 1 in 68 figure (which many including Silberman himself misrepresent) and assume this figure applies to people in all age groups,  there are still more Jews than autistics in the U.S.A.  The 1 in 68 figure only applied to one birth cohort in 2002 when they were eight years old.  This assumes that the prevalence rate is the same in all age groups for which there is no proof.  The CDC and others have changing prevalence figures all the time based on changing definitions of autism and the locations where they actually look for autistics which change every two years.  The 2.2-3% Jewish figure has held up over time for decades.  As a member of both groups (I'm both autistic and Jewish) I not only find Silberman's analogy offensive but it is outright wrong.

In the last chapter he trivializes mark rimland's very serious handicaps by stating that the support he gets from family and community are far better for him than a cure would be.  I've met mark rimland at an autism conference and he is quite handicapped.  He'll never be able to take care of himself and will need lifelong aides to care for his every need and take care of him constantly.  If his name were Mark Smith or Mark Jones and his father had not been a well-known figure in the autism community, he'd never have been able to promote his artwork and he would never have received the support that Silberman cites.

Silberman also lauds specilisterne as a solution for the employment problems of autistics though it was only able to exist through subsidies from the socialist government of denmark and grants from the state of delaware and has never been able to offer real and sustainable revenue and employment of autistic people and has lost money. 

He also claims there are all sort of services and accommodations that can help autistic people and that we should not be spending time on scientific research to help autistic people.  For the most part, he's vague as to what these are or how they can be workable.  I contend that no accommodations will help autistics get around the disabling aspects of their condition.

Most of the autistic people Silberman wrote about in his book are at the mildest end of the spectrum (assuming they're autistic at all).

It's sad that Silberman's book will inevitably be such a commercial success and get all the notoriety it continues to receive and that people will get the wrong idea about autism and what a horrible disability it truly is and how much we need to do scientific research to find the cause, find viable treatments and ultimately cure this devastating disease. 

Tuesday, June 16, 2015

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.