A couple of days ago, the democratic party's leading contender, Hillary Clinton, announced a sweeping range of policy recommendations for autism spectrum disorders she says she'll attempt to implement if she's elected to the white house. She apparently had a conference call with Ari Ne'eman and a variety of other people. Interestingly enough, many of these recommendations reflect issues that Ne'eman's organization, ASAN, has tried to implement. I'd like to touch upon some of them.
She recommends a study to assess autism prevalence in adults similar to what the CDC does for eight-year-old children every two years under the Autism and developmentally disabilities monitoring network which was passed when the CARES act was still the combating autism act. The ADDM spends millions of dollars a year to produce these prevalence findings. They track areas, just in specified areas of the country and not the entire country. Why these specific areas are chosen is unclear. Every two years they track different counties and cities within the same state and often change the geographical areas, so the prevalence figures have little value. Also, it is unclear to Gadfly how the CDC prevalence monitoring helps any autistic children achieve better educational goals or occupational goals when they become adults. How are all these people served by the millions that is spent on these prevalence studies? The cost is particularly sensitive in that the majority of autistic can't work, can't get on disability and are either supported by their parents or live in abject poverty.
The CDC searches special education schools and clinics where eight-year-old children are likely to present. They won't have this luxury in adults which makes studying the adult prevalence so much more difficult. Contrary to what the age of autism people and others who believe there's an autism epidemic that just happened in recent years in younger persons, this is the likely reason similar prevalence numbers haven't been found in older people. Or perhaps she wants to do something like the Brugha study whose methodology was highly questionable. It was based on a modified version of Baron-Cohen's autism quotient survey which turned out to be a poor screen for autism. They then found only 19 people and on that made an "educated guess" that 1% of the entire adult British population had an autism spectrum disorder. Not to mention the fact that this screening tool is only designed for higher functioning autistics and not ones who are nonverbal or have an intellectual disability. Finding adult autism prevalence in adults is really like looking for a needle in a haystack. I don't believe it is money well spent when many autistics live in poverty and there's a shortage of funding for general services that help parents care for their autistic children.
Hillary Clinton wants to help find jobs for autistic people vis a vis legislation such as the American Disabilities Act and transition plans and the demonstration programs for which legislation has already been introduced by some members of congress. However, she neglects to mention how autistic people who are disabled by their condition would be amenable to be trained for various occupations to make them more employable. Even if taxpayer or private money were available, how could it be implemented. Most autistic people would have difficulty with schooling or learning a trade due to their disability. Of course, Clinton takes a card out of Laurent Mottron's bag of tricks, claiming they have all these talents and abilities that will make them marketable to employers while neglecting to cite any references or proof.
The Americans with Disabilities act only requires employers to give Reasonable accommodations to disabled employees. Tolerating tantruming, meltdowns and disruptive behavior that would occur at a job by a variety of autistic people are not reasonable accommodations. in one case a medical resident stating that acceptance and understanding of his asperger's was a reasonable accommodation did not prevail in federal court. As was the case of a man with an ASD whose request for acceptance of his loud voice and asking customers personal questions.
Hillary Clinton also wants to legislate bullying out of existence. That's never going to happen. There are always going to be kids who bully other kids. It's a shame, but there's no easy and simplistic way you're going to be able to stop it. Of course, I agree that rather than the autistic child being segregated from their peers because of bullying, that the bullies should be segregated and sent to a reform school where they're locked up for their misdeeds. Of course, there's no more chance of that ever happening as there is of a cure for autism being found in my lifetime. Of course Mrs. Clinton takes advice from ASAN, so I suppose she doesn't want to do anything about Clay Adams, Phil Gluyas, Marc Rosen, and other neurodiversity proponents who bully and harass and libel me over the internet. How dare she listen to any suggestions from Ari Ne'eman who accepted membership dues and donations from these people who helped pay his $71,000 salary in 2013.
Much to neurodiversity's chagrin, one of the things that Mrs. Clinton did recommend was continuing projects like Autism Speaks Mssng campaign to search for genes that might figure in the etiology of autism.
However, she fails to give policy recommendations on many fronts. What of autistic people who can't find mates? What does Mrs. Clinton plan to do about that? What about the fact that the vast majority of autistics who have a seriously compromised ability to work are denied disability. If they get it at all, they have a protracted court battle that goes on for years. Why won't she mention this?
Worst of all, she neglected to mention one word about autism prevention or ultimately finding a cure for autism. It would seem Mrs. Clinton is another politician who unfortunately has been influenced by neurodiversity advocates.
Autism is not a political or legislative problem. It is a developmental disability. We need scientific funding and not politics to help solve the problems of autism.
Will Mrs. Clinton's policy recommendations fly? Gadfly doesn't think so.
Thursday, January 7, 2016
Tuesday, January 5, 2016
Where does Silberman get his info on autism genetic research?
In the continued saga of Steve Silberman strangeness, I just happened to be reading a piece written a few months ago by this person who is now the most prominent popular writer on autism related matters. The piece has (at least to me) the offensive title Autism is a valuable part of humanity's genetic legacy. The phrase that stands out most prominently to me in the article is this:
In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others.
Since Silberman neglected to cite any source for this, I'm curious where he got this information since it completely contradicts everything that I've read about autism genetic research that's taken place in the last eight years or so.
Jonathan Sebat for instance has published research showing a significant association between autism and de novo mutations. Dr. Sebat states that he expects that the actual cases of de novo mutations is in reality substantially higher than what he found since the techniques for identifying these genetic abnormalities are still not advanced enough to find spontaneous mutations on the genome that might be even smaller than those already identified.
A study done in Israel several years ago showed that children of fathers over the age of forty were nearly six times as likely to have an autism spectrum disorder than the offspring of younger fathers. It was considered probable that this was the result of de novo mutations in the sperm of the older dads.
A very recent study done at Cold Harbor Springs lab has suggested that probably half of all cases of autism are caused by rare de novo mutations on genes that have a particular vulnerability and that these are not old genes as Silberman claims, but are expunged rapidly from the population since autistic people rarely have children. Previous research done by this group showed that some of these de novo mutations were carried by the mothers who had a protective effect against autism but their children (usually boys) inherited them in an autosomal dominant fashion.
This is just a small sampling of articles that suggest rare de novo mutations not found in the general population are a significant factor in autism spectrum disorders.
The Slate article was apparently excerpted from the Neurotribes book. It's been a while since I've read neurotribes and I can't recall if Silberman wrote this in the book or if he gave any references to any actual genetic studies that support his statement. Since there's been so much science that contradicts what he says, I'm wondering if this research exists, could Silberman or anyone else cite any references since I can't seem to find any on the internet. Maybe there's something out there, but it would seem that Silberman has made statements on the genetics of autism that have no factual basis as was the case with his statements on Kanner's work. Even if there were such research, Silberman would have to explain why he said what he said in light of recent research that has found that a significant number of autism cases are the result of de novo mutations.
In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others.
Since Silberman neglected to cite any source for this, I'm curious where he got this information since it completely contradicts everything that I've read about autism genetic research that's taken place in the last eight years or so.
Jonathan Sebat for instance has published research showing a significant association between autism and de novo mutations. Dr. Sebat states that he expects that the actual cases of de novo mutations is in reality substantially higher than what he found since the techniques for identifying these genetic abnormalities are still not advanced enough to find spontaneous mutations on the genome that might be even smaller than those already identified.
A study done in Israel several years ago showed that children of fathers over the age of forty were nearly six times as likely to have an autism spectrum disorder than the offspring of younger fathers. It was considered probable that this was the result of de novo mutations in the sperm of the older dads.
A very recent study done at Cold Harbor Springs lab has suggested that probably half of all cases of autism are caused by rare de novo mutations on genes that have a particular vulnerability and that these are not old genes as Silberman claims, but are expunged rapidly from the population since autistic people rarely have children. Previous research done by this group showed that some of these de novo mutations were carried by the mothers who had a protective effect against autism but their children (usually boys) inherited them in an autosomal dominant fashion.
This is just a small sampling of articles that suggest rare de novo mutations not found in the general population are a significant factor in autism spectrum disorders.
The Slate article was apparently excerpted from the Neurotribes book. It's been a while since I've read neurotribes and I can't recall if Silberman wrote this in the book or if he gave any references to any actual genetic studies that support his statement. Since there's been so much science that contradicts what he says, I'm wondering if this research exists, could Silberman or anyone else cite any references since I can't seem to find any on the internet. Maybe there's something out there, but it would seem that Silberman has made statements on the genetics of autism that have no factual basis as was the case with his statements on Kanner's work. Even if there were such research, Silberman would have to explain why he said what he said in light of recent research that has found that a significant number of autism cases are the result of de novo mutations.
Saturday, December 26, 2015
Why you shouldn't buy Neurotribes: Silberman trivializes "head-banging" and "diaper-wearing"
I see that one of my favorite autism writers is at it again, trivializing the fact that some children on the autism spectrum engage in self-injury and are incontinent. In this article, Steve Silberman was asked about one blogger who criticized his book, because he left out any descriptions of autistics who were "head-bangers" and "diaper-wearers"If the Forbes magazine reporter is not misquoting him he states:
“Is this really how we want to describe our fellow human beings, no matter how many serious challenges they have in daily life? If we live long enough, we all become ‘diaper wearers’ eventually,” Silberman said. “Disability is a part of the human experience.”
Since Silberman seems to take umbrage to the words "head-bangers" and "diaper-wearers", i'll refrain from using those terms and just make the more polite factual statements that there are persons on the autism spectrum who self-mutilate themselves and who are incontinent. I don't know if Leo Rosa and Mark Rimland, apparently the only more severe cases of autism that Silberman has ever encountered, engage in self-injury or are incontinent, but there are in fact some autistic people for whom this is a fact of life. Though I have no recollection of this, I was told by my parents that as a toddler I'd sometimes bang my head into a wall out of frustration. Though I don't do this now, I think this was before the age of five and I have no memory of this.
Most persons with an interest in autism have not been involved in it as long as I have, so they have no memory of when Ivar Lovaas and his disciples would give powerful electric shocks to children who did this and justify it, by saying that they were saving the kids from chewing their fingers off or banging their head into a wall so hard that they would receive serious injuries and stating that kids who had to experience the discomfort of wearing a straight jacket could have the freedom from the restraint. Mr. Silberman, I know you did research on Lovaas and wrote of the historical shameful period when aversives were used, so you should know better. Some children need to be in helmets so they won't get injured banging their heads into walls. But I suppose Silberman and the rest of the neurodiversity crowd would just argue this is a reasonable accommodation so the head banger is just fine as long as he/she wears a helmet. I wonder if this does not interfere with their sleep or how they'll shower and shampoo so they don't get lice or something in their hair because the parents/caretaker does not dare take the helmet off for fear that the child will get a serious injury.
While it's true, we all have to wear diapers as infants and early toddlers, there are plenty of people who never have to wear diapers after this, no matter how old they are, like my paternal grandmother who lived to 105.
I don't know how disability has ever been a part of Silberman's human experience, unless he believes that his homosexuality was some sort of social disability prior to 1974 before the american psychiatric association removed it from the DSM when he was seventeen.
Mr. Silberman, if you ever happen to read this, I just want to say if the reporter was not misquoting you, shame on you for saying this, Shame on you for trivializing this horrible disability you have no experience with. I know in the past you told me to be careful of what I write as you did not name drop Zuckerman and Gates as autistic and that was mere speculation of a reporter that was interviewing, and I've done my best to heed your warning, but it sure looks to me like the reporter was asking you this and quoting you directly.
It's bad enough that you've stated that the reason autistics can't work is that human resource offices aren't used to nonverbal people and won't give them a communication device, that autism versus neurotypicality is no different from a windows versus linux operating system, and the fact that you've stated mark rimland does not need a cure for his autism because of the love and acceptance of the community he lives in. However, now, in my esteemed opinion, you've hit an all-time low and I just want to tell you I feel this statement of yours is absolutely despicable if the reporter was not misquoting you and you should be ashamed of yourself. This is another reason why everyone should boycott your book or any other book you write in the future in spite of the reporter saying we should buy it. shame on you! Soapbox rant off.
“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.
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.
Subscribe to:
Posts (Atom)
