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.
Saturday, December 26, 2015
Sunday, December 20, 2015
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.
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.
Monday, December 7, 2015
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.
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.
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.
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.
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.
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.
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.
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