Wednesday, September 24, 2008
research leading to possible cure for autism
I have just listened to an interesting radio show on NPR, about research being done to reverse the symptoms of fragile X syndrome. I realize this might be another flash in the pan and nothing that could really lead to any sort of breakthrough. However, the implications are fascinating as well as the fact that this might be able to cure autism once and for all at some point in time. Wouldn't this be a kick in the head to the neurodiversity movement who thinks genetic research would result in abortions of autistic fetuses and some who even believe that this will happen. Well, might not be the magic bullet we are all hoping for that will cure autism, but an interesting show any how.
Monday, September 15, 2008
nearly half of california special ed students fail high school exit exam
Today I read an interesting piece in the Los Angeles times about the relatively new high school exit exam that has been mandatory in california for a bit of time now. 2008 was the first year that special ed students were required to take it alongside their nonhandicapped peers.
In spite of the pie-in-the-sky promises of the IDEA, ABA for autistic children etc., it came as no surprise that only 53.8% of those special ed students passed the exam while 46.2% failed. So nearly half of all children in the california high school classes of 2008 who receive special ed services won't be receiving their diplomas. By comparison 93.6% of non-handicapped high schoolers passed the exam.
Sid Wolinsky from Disability Rights Advocates who tried to exempt special ed kids from the exam was quoted as saying that the psychologic damage to these children is horrific. Dozens of parents of these children offered Wolinsky sworn declarations of their children's depression from failure of the exam. It must be noted that the California state law only applies to public schools and private school students are exempt. It was the class of 2006 who was first required to take this test. Special education students were exempt in 2006 and 2007.
State supt of public instruction, Jack O'Connell who sponsored the exit exam bill for then governor Gray Davis was quoted as saying that exempting special ed students from the exit exam was not helping them and setting them up for failure in the workplace.
One of the reasons for passage of the Education for all handicapped act in 1975 (later to become the individuals with disabilities education act when it was reauthorized in 1991) was that if handicapped students were to receive educational opportunities, that this would help them succeed in the workplace and welfare, SSI, etc. would be greatly decreased for those handicapped children who received IEPs under this law. Someone named Jacobson also did a cost benefit analysis of ABA for autistic children stating the exorbitant costs of ABA therapy were greatly exceeded by the costs of a life on the dole and claimed that ABA was saving autistic children from life on the dole. The quality of science in this analyses was typically very bad, as no adult outcomes have been published in the peer reviewed literature for ABA. Jacobson only used an informal presentation at a conference to prove ABA's efficacy in preparing adult autistics for the workplace.
The IDEA has now been in existence for over 30 years, spending on special education increased 60 fold in less than a 30 year period. One has to wonder if the nearly half of special ed students who failed the exit exam won't have significant problems in the workforce starting at age 22 when they are aged out of special ed services. Perhaps it is time for reexamination of the IDEA and whether or not this law should be abolished.
In spite of the pie-in-the-sky promises of the IDEA, ABA for autistic children etc., it came as no surprise that only 53.8% of those special ed students passed the exam while 46.2% failed. So nearly half of all children in the california high school classes of 2008 who receive special ed services won't be receiving their diplomas. By comparison 93.6% of non-handicapped high schoolers passed the exam.
Sid Wolinsky from Disability Rights Advocates who tried to exempt special ed kids from the exam was quoted as saying that the psychologic damage to these children is horrific. Dozens of parents of these children offered Wolinsky sworn declarations of their children's depression from failure of the exam. It must be noted that the California state law only applies to public schools and private school students are exempt. It was the class of 2006 who was first required to take this test. Special education students were exempt in 2006 and 2007.
State supt of public instruction, Jack O'Connell who sponsored the exit exam bill for then governor Gray Davis was quoted as saying that exempting special ed students from the exit exam was not helping them and setting them up for failure in the workplace.
One of the reasons for passage of the Education for all handicapped act in 1975 (later to become the individuals with disabilities education act when it was reauthorized in 1991) was that if handicapped students were to receive educational opportunities, that this would help them succeed in the workplace and welfare, SSI, etc. would be greatly decreased for those handicapped children who received IEPs under this law. Someone named Jacobson also did a cost benefit analysis of ABA for autistic children stating the exorbitant costs of ABA therapy were greatly exceeded by the costs of a life on the dole and claimed that ABA was saving autistic children from life on the dole. The quality of science in this analyses was typically very bad, as no adult outcomes have been published in the peer reviewed literature for ABA. Jacobson only used an informal presentation at a conference to prove ABA's efficacy in preparing adult autistics for the workplace.
The IDEA has now been in existence for over 30 years, spending on special education increased 60 fold in less than a 30 year period. One has to wonder if the nearly half of special ed students who failed the exit exam won't have significant problems in the workforce starting at age 22 when they are aged out of special ed services. Perhaps it is time for reexamination of the IDEA and whether or not this law should be abolished.
Sunday, September 14, 2008
Banned from wrongplanet forum
Well I have just been banned from one of the forums on Wrongplanet.net. It is a vilification of John Best. I posted to them about the errors of their ways just politely telling them they should be accepting of john best and not vilify him since neurodiversity is supposed to be about compassion and acceptance. It would seem it is very possible that John Best is on the autism spectrum. I told them they were being inconsistent in their philosophy if they did not accept him as one of their own. That in order to be consistent with their philosophy they should just be accepting of him. Dave Seidel countered with some stuff about how I was wrong. Someone else was asking why I am a person who is opposed to neurodiversity would be posting on wrongplanet. I told them I was just trying to show them the errors of their ways and that forums that preach to the choir are boring.
Someone named Harry Brown then went on to claim that he has tried to be helpful to me in the past suggesting ways that I could work and get my writings published. Interesting I have never seen those posts. I have only just seen some nasty, angry comments about me that he has made on wrongplanet. What is more bizarre is that harry brown claimed he thought that my essay about undiagnosing gates, einstein and jefferson was not very good. He basically called it a high school essay, crap, said I was crass and superficial etc. Yet he seems to think my writing is good enough to be published if he has offered me help in getting my writings published in the past. That seems very strange to me. Mr. Williams seems very angry and often makes abusive posts from what I have seen. It saddens me he has to embrace a flawed ideology like neurodiversity just so he can feel better about himself.
I tried to post a follow-up to Seidel's and William's nonsense and then was notified that I had been banned from the forum.
I said nothing rude or nasty to anyone. I was very polite. It just seems that wrongplanet.net wants to engage in censorship. Some of the members it would seem complained to someone and got me banned from the forum. As is typical, in the neurodiversity movement, they are intolerant of anyone who disagrees with them. When I have deleted some posts here by people who were very abusive towards me, harassing me, trying to bait me, etc. They have cried censorship, etc. Once again neurodiversity seems to throw stones from a house made of extremely fragile glass.
I guess there is no point in anyone trying to post on wrong planet who disagrees with anything they have to say as they are clearly intolerant and have no interest in having a dialogue with anyone. I guess this is par for the course from the neurodiversity movement.
Someone named Harry Brown then went on to claim that he has tried to be helpful to me in the past suggesting ways that I could work and get my writings published. Interesting I have never seen those posts. I have only just seen some nasty, angry comments about me that he has made on wrongplanet. What is more bizarre is that harry brown claimed he thought that my essay about undiagnosing gates, einstein and jefferson was not very good. He basically called it a high school essay, crap, said I was crass and superficial etc. Yet he seems to think my writing is good enough to be published if he has offered me help in getting my writings published in the past. That seems very strange to me. Mr. Williams seems very angry and often makes abusive posts from what I have seen. It saddens me he has to embrace a flawed ideology like neurodiversity just so he can feel better about himself.
I tried to post a follow-up to Seidel's and William's nonsense and then was notified that I had been banned from the forum.
I said nothing rude or nasty to anyone. I was very polite. It just seems that wrongplanet.net wants to engage in censorship. Some of the members it would seem complained to someone and got me banned from the forum. As is typical, in the neurodiversity movement, they are intolerant of anyone who disagrees with them. When I have deleted some posts here by people who were very abusive towards me, harassing me, trying to bait me, etc. They have cried censorship, etc. Once again neurodiversity seems to throw stones from a house made of extremely fragile glass.
I guess there is no point in anyone trying to post on wrong planet who disagrees with anything they have to say as they are clearly intolerant and have no interest in having a dialogue with anyone. I guess this is par for the course from the neurodiversity movement.
Saturday, September 13, 2008
Sarah Pallin wants to cure gays and an interesting short story i wrote
Well I came across an interesting article about Sarah Palin talking about some of her religious stuff including a brief mention of her wanting to cure gays of their homosexuality. Interestingly enough some years ago I wrote a short story about an ASD man who seeks out a televangelist to be converted from straight to gay. Just in case anyone is interested.
Thursday, September 11, 2008
Vaccinated versus Nonvaccinated: Maybe Tom and Sally Can Pick up the Tab
As most persons interested in autism know, yet another study has shown that MMR vaccinations have no relation to autism. The purpose of these studies which undoubtedly involve the expenditure of funds and time seems to be in order to convince parents to go ahead and vaccinate their kids. This money could be spent on doing legitimate scientific work that could prevent and cure autism, or even help pay for job training programs or housing for autistics.
The latest study is nothing new. Many studies before this have shown evidence that not only does MMR have nothing to do with autism but thimerosal in vaccines and mercury don't either. Yet what is the point of doing study after study. There is clearly nothing that will convince a good number of parents that their offspring's autism was not caused by vaccines. We only have a vicious circle that in my opinion accomplishes nothing. In fact, in order to determine that there was no relationship between thimerosal and autism all one has to do is look at the 2003 update of the california report on the prevalence of autism showing that between birth years 1970 and 1990 when there was only one thimerosal containing vaccination prevalence of autism tripled. I have written about this.
Various explanations were given when I asked the persons pushing the vaccine hypothesis about this. Sally Bernard claimed that due to new laws mandating vaccination for school attendance caused a huge increase in uptake of the DPT vax. Mark Geier also made this same claim to me and added that at one time there were only three shots given to a child and then the number increased to five. The problem with this is that there would have had to have been a corresponding decrease in whooping cough over the same time period which would have been of a much greater magnitude than the corresponding autism increase. No more than three shots were ever given to a child before the age of 1. In UK where autism increases have paralleled those of the U.S., they have only had DPT as a thimerosal containing vaccine yet, only accelerated the schedule giving children shots at earlier ages during infancy. The fifth shot is a booster shot given to children at age 5 which obviously is inconsequential for causing autism.
One of the most interesting explanations was given to me by Boyd Haley who claimed that there were a number of thimerosal containing products such as ophthalmic solutions and other things besides vaccines that increased from 1970 to 1990. Yet, as far as I know, SAFEMINDS and the other mercury causes autism groups have never shown any data of thimerosal containing products besides vaccines.
Haley also told me in his correspondence with me that he could be convinced that there was no relationship between autism and thimerosal if a study were to be done comparing autism rates in vaccinated versus nonvaccinated children showing they had comparable numbers of children with the condition. It would seem that this argument is somewhat of an ace in the hole for those who believe that vaccines cause autism, they won't be convinced until such a study is done.
About five years ago during a brief series of email correspondences that I had with Mark Blaxill, he claimed that there were problems with all of the studies done. He stated part of the problem that SAFEMINDS had in trying to dispute the data against their position was that they had nowhere near the resources of the government and ergo had an uphill battle. Mark Blaxill along with SAFEMINDS colleague Lynn Redwood currently serve on the IACC which controls funding and research directions in autism. They still cling to this thimerosal hypothesis which means this will be direction research is headed in part. The fact that these people are chosen to partly run the show most likely means that research into the etiology of autism that could result in finding a cause or even a cure will be greatly hampered.
Yet, how valid is this limited resources argument of Blaxill's? If I am not mistaken his fellow mercury militia members Tom and Sally Bernard have a net worth of upwards $300 million. Rick Rollens when I met him boasted to me how he raised $40 million dollars for autism research by founding the MIND institute largely at California taxpayer's expense. Autism speaks I don't think have assets totalling more than about $20 million. I am not sure of these figures but even if you want to give a more conservative estimate that the MIND institute and autism speaks have combined assets of about $100 million then this still might be less than a third of the Bernard family's total assets. Anyone can correct me about any of these figures if I am wrong or grossly overestimating the Bernard's wealth.
Sally Bernard, if you read this, I am going to be a bit blunt. I think you should either put up or shut up. I think you and your husband Tom should fund that study of vaccinated versus nonvaccinated children and present the results to peer review. I am not talking about a journal like medical hypothesis where you published your autism novel form of mercury poisoning all those years ago, nor all of the amateurs including yourself who were involved in writing this and providing the data. I am talking about a real controlled study with hired professional scientists published in a much less speculative journal than medical hypothesis. I think you can afford to fund such a study. In the event that you can show much lower rates of autism in nonvaccinated children, all the power to you. If not, then maybe this issue can be settled once and for all. Perhaps you and Tom could pick up the tab for this study.
The latest study is nothing new. Many studies before this have shown evidence that not only does MMR have nothing to do with autism but thimerosal in vaccines and mercury don't either. Yet what is the point of doing study after study. There is clearly nothing that will convince a good number of parents that their offspring's autism was not caused by vaccines. We only have a vicious circle that in my opinion accomplishes nothing. In fact, in order to determine that there was no relationship between thimerosal and autism all one has to do is look at the 2003 update of the california report on the prevalence of autism showing that between birth years 1970 and 1990 when there was only one thimerosal containing vaccination prevalence of autism tripled. I have written about this.
Various explanations were given when I asked the persons pushing the vaccine hypothesis about this. Sally Bernard claimed that due to new laws mandating vaccination for school attendance caused a huge increase in uptake of the DPT vax. Mark Geier also made this same claim to me and added that at one time there were only three shots given to a child and then the number increased to five. The problem with this is that there would have had to have been a corresponding decrease in whooping cough over the same time period which would have been of a much greater magnitude than the corresponding autism increase. No more than three shots were ever given to a child before the age of 1. In UK where autism increases have paralleled those of the U.S., they have only had DPT as a thimerosal containing vaccine yet, only accelerated the schedule giving children shots at earlier ages during infancy. The fifth shot is a booster shot given to children at age 5 which obviously is inconsequential for causing autism.
One of the most interesting explanations was given to me by Boyd Haley who claimed that there were a number of thimerosal containing products such as ophthalmic solutions and other things besides vaccines that increased from 1970 to 1990. Yet, as far as I know, SAFEMINDS and the other mercury causes autism groups have never shown any data of thimerosal containing products besides vaccines.
Haley also told me in his correspondence with me that he could be convinced that there was no relationship between autism and thimerosal if a study were to be done comparing autism rates in vaccinated versus nonvaccinated children showing they had comparable numbers of children with the condition. It would seem that this argument is somewhat of an ace in the hole for those who believe that vaccines cause autism, they won't be convinced until such a study is done.
About five years ago during a brief series of email correspondences that I had with Mark Blaxill, he claimed that there were problems with all of the studies done. He stated part of the problem that SAFEMINDS had in trying to dispute the data against their position was that they had nowhere near the resources of the government and ergo had an uphill battle. Mark Blaxill along with SAFEMINDS colleague Lynn Redwood currently serve on the IACC which controls funding and research directions in autism. They still cling to this thimerosal hypothesis which means this will be direction research is headed in part. The fact that these people are chosen to partly run the show most likely means that research into the etiology of autism that could result in finding a cause or even a cure will be greatly hampered.
Yet, how valid is this limited resources argument of Blaxill's? If I am not mistaken his fellow mercury militia members Tom and Sally Bernard have a net worth of upwards $300 million. Rick Rollens when I met him boasted to me how he raised $40 million dollars for autism research by founding the MIND institute largely at California taxpayer's expense. Autism speaks I don't think have assets totalling more than about $20 million. I am not sure of these figures but even if you want to give a more conservative estimate that the MIND institute and autism speaks have combined assets of about $100 million then this still might be less than a third of the Bernard family's total assets. Anyone can correct me about any of these figures if I am wrong or grossly overestimating the Bernard's wealth.
Sally Bernard, if you read this, I am going to be a bit blunt. I think you should either put up or shut up. I think you and your husband Tom should fund that study of vaccinated versus nonvaccinated children and present the results to peer review. I am not talking about a journal like medical hypothesis where you published your autism novel form of mercury poisoning all those years ago, nor all of the amateurs including yourself who were involved in writing this and providing the data. I am talking about a real controlled study with hired professional scientists published in a much less speculative journal than medical hypothesis. I think you can afford to fund such a study. In the event that you can show much lower rates of autism in nonvaccinated children, all the power to you. If not, then maybe this issue can be settled once and for all. Perhaps you and Tom could pick up the tab for this study.
Wednesday, September 10, 2008
My letter to the interagency autism coordinating committee
I have just sent the following email to the IACC as per their request for input by September 19:
Hello, I am a high functioning autistic male who wants a cure for autism. I am responding to your requests for information by September 19 as per your request. I was wondering if the lauren Mottron lab receives funding by the NIMH and under the combating autism act? If so I believe their funding should be discontinued as they have at least one person who undermines the nobel effort to find a cure for autism. This person has written an essay implying that people who want to cure autism are intolerant bigots. Also there is an autism researcher named Morton Gernsbacher who wrote an essay, autistics need acceptance and not cure and makes unfounded statements that severely autistic people have made great contributions to the arts and sciences. I was hoping that her funding would also be discontinued and that she will no longer be allowed to peer review scientific articles that have been funded under the combating autism act.
Also, I believe that Mark Blaxill's and Lynne Redwood's membership on the IACC should be discontinued as these two cling to the disproven hypothesis that thimerosal causes autism and will only impede advances into finding a cure for this disorder, much thanks.
Hello, I am a high functioning autistic male who wants a cure for autism. I am responding to your requests for information by September 19 as per your request. I was wondering if the lauren Mottron lab receives funding by the NIMH and under the combating autism act? If so I believe their funding should be discontinued as they have at least one person who undermines the nobel effort to find a cure for autism. This person has written an essay implying that people who want to cure autism are intolerant bigots. Also there is an autism researcher named Morton Gernsbacher who wrote an essay, autistics need acceptance and not cure and makes unfounded statements that severely autistic people have made great contributions to the arts and sciences. I was hoping that her funding would also be discontinued and that she will no longer be allowed to peer review scientific articles that have been funded under the combating autism act.
Also, I believe that Mark Blaxill's and Lynne Redwood's membership on the IACC should be discontinued as these two cling to the disproven hypothesis that thimerosal causes autism and will only impede advances into finding a cure for this disorder, much thanks.
I realize this will probably be about as effective as writing a letter to Santa Claus but at least I was able to get my frustration over people who I believe are undermining a cure off my chest. I might at some point write the IACC about ideas I have for research rather than trying to do something about certain individuals who I feel undermine the effort to prevent and cure autism. Some people may feel I am engaging in a personal attack or being vindictive but this is not the case. Though I have not worked in a while I have paid probably more in taxes than the vast majority of those on the autistic spectrum (this of course excludes neurodiversity "asperger's persons" who decided well into adulthood that they had an ASD after finding out their child had an ASD) so I feel that I have a right to give some input on these individuals. I have really suffered as a result of my ASD and if people think I am a bad person for writing this letter to the IACC and posting this publically and naming certain individuals in my email so be it.
Thursday, September 4, 2008
Another ASD sufferer writes anti-neurodiversity essay
There is not a whole lot that is written on the age of autism web page that I agree with. Today, I was happy to read an essay that was published there by a young man with Asperger's syndrome named Jake Crosby. He writes An essay against neurodiversity. He seems to also take the AOA line about vaccines causing autism which I don't really agree with, but other than that it was a really excellent essay. At least some people who are familiar with my work are aware of my essay where I urge people interested in autism to just say no to neurodiversity. I am glad another person who suffers from ASD has also written on this subject.
Monday, September 1, 2008
Effie Linares, Lovaas success story?
A recent article appeared in the Modesto Bee talking about an 11-year-old boy named Effie Linares who has been given as yet another anecdotal example of ABA's efficacy as an autism intervention. The boy is shown in the article smiling with three of his good friends. A seemingly happy boy untouched by the misery of autism that affects children in many instances causing suffering. The article talks about how he is mainstreamed in a fifth grade class in a regular school.
But is this really a success story? The article does not really give a clear before and after picture of the boy's functioning level, other than talking about how at one time he went ballistic when other people touched his Disney videos which at age 11 he no longer does. But what proof is there that natural maturity just caused him to outgrow this behavior and there was no casual relationship between the 40 hour per week Lovaas treatment and an end to this behavior? Also, the article states that he was mainstreamed since the age of 5. It is possible he was always quite high functioning relative to other autistic children. We can't really tell anything from the article.
Lovaas claimed in 1987 that nearly half of his best outcome subjects in the experimental group had completely normal functioning, in other words, no one would possibly know that they were autistic or had ever been autistic. Is this the case for Effie? The answer would appear to be no from a read of the article. He still has a shadow that aides him in his class so the mainstreaming is not 100% and does not jibe with the Lovaas best outcome subjects who had no aides or shadows. Effie's father also has to work the night shift in order to volunteer in the school to help out his son. To me, this does not sound like normal functioning or a complete success story. Effie's teacher also states that he says and does things that show he is different to the other kids, so it would seem that this boy is not indistinguishable from his peers. The article neglects to talk about his academic performance in relation to the other children in his class.
Most pertinent of all, what will happen when Effie becomes an adult? Will he be able to hold down a job, date women? As an autistic adult who by most standards is very high functioning, I have had no success in finding a girlfriend and though I worked sporadically for nearly 28 years, I finally gave up the ghost it was so difficult and I had such a hard time in the work place. I have written in the past about the lack of acknowledgement of the existence of autistic adults and how we are not Peter Pans. Someday we will grow up and have all of the issues of adulthood to contend with, just like Neurotypical persons. Of course no one is thinking of what might happen to Effie and other success stories when they become adults. No adult outcomes, have ever been published in the peer reviewed literature of autistic children who have undergone ABA. The informal presentations at conferences, while seemingly a shoddy standard of science, have been used to claim successful adult outcomes and provide cost-benefit analyses of ABA as a treatment.
Even as far as anecdotal success of ABA as an autism treatment, the oldest success story that I am aware of is that of Drew Crowder written about in the book Autism from Tragedy to Triumph. He is in college when we last hear about Drew. I have yet to hear of any adult success stories even though the children in the 1987 study are now probably about 40, some possibly older.
The playwright Bertolt Brecht said that those who laugh have not been told the terrible news. Though this is something that parents of autistic children don't like to think about, the the stark reality is there.
But is this really a success story? The article does not really give a clear before and after picture of the boy's functioning level, other than talking about how at one time he went ballistic when other people touched his Disney videos which at age 11 he no longer does. But what proof is there that natural maturity just caused him to outgrow this behavior and there was no casual relationship between the 40 hour per week Lovaas treatment and an end to this behavior? Also, the article states that he was mainstreamed since the age of 5. It is possible he was always quite high functioning relative to other autistic children. We can't really tell anything from the article.
Lovaas claimed in 1987 that nearly half of his best outcome subjects in the experimental group had completely normal functioning, in other words, no one would possibly know that they were autistic or had ever been autistic. Is this the case for Effie? The answer would appear to be no from a read of the article. He still has a shadow that aides him in his class so the mainstreaming is not 100% and does not jibe with the Lovaas best outcome subjects who had no aides or shadows. Effie's father also has to work the night shift in order to volunteer in the school to help out his son. To me, this does not sound like normal functioning or a complete success story. Effie's teacher also states that he says and does things that show he is different to the other kids, so it would seem that this boy is not indistinguishable from his peers. The article neglects to talk about his academic performance in relation to the other children in his class.
Most pertinent of all, what will happen when Effie becomes an adult? Will he be able to hold down a job, date women? As an autistic adult who by most standards is very high functioning, I have had no success in finding a girlfriend and though I worked sporadically for nearly 28 years, I finally gave up the ghost it was so difficult and I had such a hard time in the work place. I have written in the past about the lack of acknowledgement of the existence of autistic adults and how we are not Peter Pans. Someday we will grow up and have all of the issues of adulthood to contend with, just like Neurotypical persons. Of course no one is thinking of what might happen to Effie and other success stories when they become adults. No adult outcomes, have ever been published in the peer reviewed literature of autistic children who have undergone ABA. The informal presentations at conferences, while seemingly a shoddy standard of science, have been used to claim successful adult outcomes and provide cost-benefit analyses of ABA as a treatment.
Even as far as anecdotal success of ABA as an autism treatment, the oldest success story that I am aware of is that of Drew Crowder written about in the book Autism from Tragedy to Triumph. He is in college when we last hear about Drew. I have yet to hear of any adult success stories even though the children in the 1987 study are now probably about 40, some possibly older.
The playwright Bertolt Brecht said that those who laugh have not been told the terrible news. Though this is something that parents of autistic children don't like to think about, the the stark reality is there.
Subscribe to:
Posts (Atom)
