This week is a redletter week in the world of neurodiversity and anti-cure. This is the week that the famous autrick (ooops I mean autreat) annual conference is held. I wrote about this two months ago You can see from the preceding link that some of the most august individuals in the neurodiversity movement, such as Morton Gernsbacher, her offspring Drew Goldsmith and Amanda Baggs, and Ari Ne'eman and Jim Sinclair and others will be giving presentations.
I see from updates on facebook and other places that a few other individuals I had not mentioned before will be attending this neurodiversity preachathon (thanks and a tip of the gadfly hat to Roger Kulp for coming up with that term) such as the well known hatemonger Clay Adams, Not to mention Alex Plank who is well known for his slipshod journalism on that stellar website Wrong Planet and is also known for claiming that most autistics don't want to be cured without providing any evidence or consulting me, Roger Kulp, Jake Crosby, Stephanie Keil or Oliver Canby and JediKnight and numerous others who long for a cure for this affliction. Apparently Phil Gluyas could not make it from Australia to complete the roster of some of the more stellar neurodiversitites in attendance.
Another member of the spectrum who will likely not be in attendance this year is "Droopy" who claims that one of the presenters, Amanda Baggs, copied her life. Though your humble blogger would never attend this unsavory conclave, Droopy has in fact tried to register for this event. She has not been allowed to attend, the belief of the ANI folks that she would be disruptive and cause trouble. I won't be a judge of whether or not Droopy should be allowed to attend.
Another alternative, would be to steal some of Ari Ne'eman's and ASAN's thunder and organize a demonstration outside of ANI with placards and give neurodiversity a taste of the medicine that they have foisted upon autism speaks. Those of us who are pro-cure don't have the capital and abilities to do these things as Ne'eman and his pals do, apparently. Particularly travelling to Pennsylvania where the autrick is being held.
Of course if ANI had a few million dollars in their coffers that they were not discussing, but wanted to dole out to some worthy cause, hopefully those of us wearing the white hats would be too ethical to accept it. The same can't be said of the ND crowd who have accepted half a million dollars from an organization who they claim wants to engage in genocide against them.
Of course the bright side is that ND conferences are few and far between. They have still not acquired the capital to have conferences in the same vein as the biomed groups, such as the infamous autism one conference and the unlocking autism conferences and other big conferences. So they can't afford to pay the speaking fees that quasi superstars like Stephen Shore can generate. Oh well, ND, better luck next year.
Monday, June 28, 2010
Tuesday, June 22, 2010
Some bad news
Some bad news in the world of autism regarding a certain individual's nomination to a government post
I have read that Unemployment among autistics is higher than 90%. Even the very optimistic Joseph of the autism natural variation blog has placed it as 75% . Though Joseph is quite vague as to where this statistic comes from. When asked by gadfly, he was not able to give an answer, except assuring me he did not make it up, as he claims autism speaks and other organizations just made up the 80% divorce rate among parents with autistic children.
However, no need to fear, Ari is here. The solution to the unemployment problem among autistics is simple. All we have to do is eliminate social pleasantry in the workplace as a criteria for hiring and a criteria for evaluating someone's job performance. Then autistics will be able to be employed and do just fine. Gee, Ari, why didn't someone think of this before? Wonder what other clever ideas this pristine gentleman will have while serving on the NDC in order to better the lives of people with disabilities (though he does not seem to believe autism is a disability).
I have read that Unemployment among autistics is higher than 90%. Even the very optimistic Joseph of the autism natural variation blog has placed it as 75% . Though Joseph is quite vague as to where this statistic comes from. When asked by gadfly, he was not able to give an answer, except assuring me he did not make it up, as he claims autism speaks and other organizations just made up the 80% divorce rate among parents with autistic children.
However, no need to fear, Ari is here. The solution to the unemployment problem among autistics is simple. All we have to do is eliminate social pleasantry in the workplace as a criteria for hiring and a criteria for evaluating someone's job performance. Then autistics will be able to be employed and do just fine. Gee, Ari, why didn't someone think of this before? Wonder what other clever ideas this pristine gentleman will have while serving on the NDC in order to better the lives of people with disabilities (though he does not seem to believe autism is a disability).
Sunday, June 20, 2010
Thomas Armstrong's book on neurodiversity
Dr. Thomas Armstrong has a new book out with the offensive title Neurodiversity discovering the extraordinary gifts of autism ADHD, Dyslexia and other brain differences. This book has been given blurbs by two of the most august members of the neurodiversity movement, Ari Ne'eman and the grand dame of ND herself Kathleen Seidel.
I have just read the book and one of its most striking features is its predictability in certain areas. We are reminded that dyslexia would not be handicapping in an agrarian society, that in certain cultures schizophrenics would be shamans or medicine men, etc. It also deals with the flawed concept of conditions such as autism and schizophrenia remaining in the population due to evolutionary advantages. Like other nongeneticists Temple Grandin and Simon B-C, Armstrong neglects to take into account de novo mutations.
It deals with the idea that none of these multiple conditions would be disabling if one were to adapt to a certain environment, a concept that Armstrong calls 'niches'. We have the comparison of Spiders spinning webs and Beavers building dams as to how a person with autism or another neurodiverse condition can adapt to their environment. For example persons with autism are good with computers so they can move to the silicon valley and get an IT job. Armstrong claims that the prevalence of autism is greater in the silicon valley then in the general population. However we see that data from the CDDS contradict this notion. Of the 21 regional centers serving the CDDS in California we see that the San Andreas regional center ranked 9th out of 21 in the growth of autism prevalence, falling far behind the West Los Angeles regional center and the Lanterman regional center in central Los Angeles. Since the growth in the administrative prevalence of autism in the regional centers parallels the growth of the IT industry, these data could be considered relevant.
He steals Temple Grandin's thunder by listing jobs that are suitable for persons with various brain differences but neglecting to cite a single example of anyone with these conditions who was successfully employed in these occupations. This is in spite of the fact that Armstrong lists a 6% employment rate among autistics though I am not sure where he obtains this figure. This contradicts the 25% figure given by Joseph of the natural variation blog who also does not seem to know where he obtained his figure when questioned about it.
Amanda Baggs is also mentioned in the book Her "In my Language" video is extolled and she is compared to a professional percussionist. Computers and the internet are given as examples of successful niche construction on Amanda's part and Amanda is quoted as boasting that her caretakers would not be able to do what she does on the internet. However, Amanda's other video where she shows how much trouble she has with boiling water is not mentioned.
Armstrong states that for some reason that is not apparent to this blogger that Amanda's situation overturns tacit assumptions about autism. Interestingly, Armstrong neglects to discuss that Amanda up until she was a teenager had normal speech, went to a college for gifted children at age 14, had no behavior manifestations that would suggest anything remotely similar to autism as verified by many of her classmates and acquaintances. Apparently by a strange coincidence during a time when Amanda was ingesting in nearly daily doses of LSD for a lengthy period she had some sort of break and thought she was an elf and was diagnosed as schizophrenic rather than autistic. Then apparently was mysteriously diagnosed as autistic well in her 20s.
The studies showing that autistics have superior scores in certain tests such as embedded figures, block design, perfect pitch, etc. are also discussed. Armstrong implies that these studies refer to all autistic people and not necessarily a limited research pool whom would be considered high functioning. Also one wonders what sort of job or life skill or ability to adjust to the world high scores on these tests are correlated with. I score in the retarded range on block design so this would not apply to me. He gives savant musician Leslie Lemke, artist Stephen Wiltshire and Daniel Tammet's accomplishments as proof of autistic superiority, implying that just a few handful of people-these examples can be applied to many thousands if not more than a million worldwide.
He gives examples of how well suited an autistic person would be able to tell edible berries from a predator's eyes in a primitive society and how much rather he would be with someone constructing a spear or making a fire regardless of their social deficiencies. He does discount the possibility that motivational impairments might prevent these so-called systematizers as Baron-Cohen calls them from applying their skills. Of course exception to rule Temple Grandin is listed as an example of this. No matter that most persons on the spectrum are not like that and are probably not too employable.
Armstrong then gives examples of the studies that two members of Laurent Mottron's research team, Michelle Dawson and Isabelle Soulieres showing how autistics could be lifted out of the intellectually impaired classrooms based on the published studies of these two exemplary researchers. He cites Dawson's study where autistics scored much higher on Raven's matrices than the Wechsler and Souleries' study where autistics are able to do Raven's matrices 40% faster than non-autistic controls.
He neglects to mention the methodologic problems of these two studies Dawson excluded autistics with known genetic conditions which would probably mean at least 10% of all autistics. If this percentage were applied to autistics with intellectual disabilities, the percentage would likely be even higher. There was a 12:1 male/female ratio in her study as opposed to 4:1 in the general population of autistics. At least some of these autistics were high functioning with nearly normal intelligence, even though there were some low functioning persons who scored much or at least substantially higher on the Raven's than on the Wechsler.
Though Dawson et. al. implied that their control group in the study was neurotypical, this was hardly the case. Rather than being representative of the general population of non-autistics they were a self-selected sample recruited from a newspaper ad whose average score on the Wechsler was 75th percentile, sorry but an average of 75th percentile of any population is certainly not typical. It presented a comparison of one atypical group to another atypical group.
To date, Dawson's work has not been replicated. In fact there are two at least partial nonreplications, one by Sven Boelte. Though some persons in Boelte's study did have a higher RPM score than Wechsler the effect was much less pronounced than in Dawson's study and was limited to lower functioning autistics with IQs less than 85. There was no effect on the higher functioning group. Kim Boddner has also done an IMFAR presentation showing that there is no difference on Wechsler's vs. Raven's in relatively high functioning autistics whose IQs are 85 or higher.
In spite of this Souleries, in an act of statistical legerdemain, based her study on the fact that this effect existed in high functioning autistics in spite of the two nonreplications. One reason, of course that Souleries did not use lower functioning persons in her research was likely due to noncompliance issues which would cause artifacts on an MRI scan, which was part of her study. She stated the superiority of Raven's versus Wechsler in higher IQ autistics as fact rather than a statement of contention. Her use of speed in the Raven's was also nonstandard as it is not a timed test.
Though the book clearly has a pro neurodiversity perspective, one wonders would at least one of the two blurbees, namely Ne'eman be happy with this book. The answer is no, because Armstrong does concede that autism, schizophrenia and other conditions do present grave problems for the individuals affected. We have seen from the meticulous documentation on autism's gadfly that Ne'eman most likely does not even believe that autism is a disability.
Armstrong also seems to deviate from some of the other tenets of the ND movement, at least as it applies to autism, though not necessarily some of the other neurodiverse conditions such as schizophrenia or affective "differences". He uses Howard Gardner's "Frames of Mind" book to show how different people can have different intelligences. He speculates that dysfunctions in the limbic system but other areas being intact in an autistic could lead to them having superior math skills yet significant social deficits. The ND belief is that autism is not limited to just some parts of the brain but that the autistic brain is hardwired from birth and that to cure a person of autism would be killing them as a human being. In fact neurodiversity hatemonger, the late "Alyric" once called me Jonathan I want to destroy myself Mitchell because of my longing for a cure for this horrible affliction.
He also writes some interesting things about special education, stuff about kids being bullied, having low self-esteem due to having to be in special education and the stories of physical abuse of children in special education schools. I experienced all these first-hand growing up as a special education student throughout the 1960s, so indeed this did resonate with me.
He discusses how special education should be changed so that the emphasis is on strengths rather than on deficits but is rather vague on how this could be accomplished. For example he just goes as far as telling how it would be good to tell a student how helpful they are in cleaning up a lunch room or how well they sing in a musical performance. He also advocates a "neurodiverse classroom" where instead of one teacher teaching an entire class there would be multiple teachers and aides and specialized accommodations involving specialized personnel to help with mobility or signing issues. Armstrong really does neglect to tell how the tab would be picked up for all these goodies given the fact that local school districts have such difficulty in providing funding for special education as it is and the nearly complete neglect of the federal government doing so, since contrary to popular belief the IDEA is an unfunded mandate with no legal obligation to provide funding by the federal government.
Ironically Armstrong talks about combating "ableism" and implies that a large part of the problem for persons with neurologic impairments in the workplace is this prejudice. Though I don't deny prejudice does exist I had a disability that impaired my performance in the workplace, though I did work sporadically with marginal success. Though my intelligence was more than intact I could not be in a regular education classroom as a young child due to behavioral issues.
I have to wonder if Armstrong ever reads any of the neurodiversity blogs or the comments section of the blogs. I don't see how anyone who does so cannot come to an alternative conclusion that the neurodiversity crowd are among the greatest "ableists" of all. From the condescending ridicule I received from Alyric regarding my special education experiences, from the mocking of my mediocre college performance by hatemonger David Andrews who was the one who encouraged Baron-Cohen to write that despicable essay on how high functioning autism should not be considered a disability and Andrews trying to show how superior he was to me because I could not do as well academically as he did or get a masters degree and hang out my shingle and practice, even in a very foreign country like Finland as he has done. Don't forget the cheap shots at my celibacy made by "Socrates" who in spite of being unemployed and homeless seems to imply that he is God's gift to women. Last but not least is the vicious hate I receive routinely from Clay Adams who was able to serve in the Navy, be gainfully employed in various contracting jobs, often being the lead man on crews and was able to get married and support two children. Bigotry and ableism are certainly pervasive on many of the hub blogs past and present.
The bottom line is, whatever assets persons with autism allegedly have, the social deficits produce either a zero sum or negative gain in functioning. I think this is proven by the relatively high functioning persons who are part of the autism hub and various ND cliques. This is something for Armstrong to think about.
I have just read the book and one of its most striking features is its predictability in certain areas. We are reminded that dyslexia would not be handicapping in an agrarian society, that in certain cultures schizophrenics would be shamans or medicine men, etc. It also deals with the flawed concept of conditions such as autism and schizophrenia remaining in the population due to evolutionary advantages. Like other nongeneticists Temple Grandin and Simon B-C, Armstrong neglects to take into account de novo mutations.
It deals with the idea that none of these multiple conditions would be disabling if one were to adapt to a certain environment, a concept that Armstrong calls 'niches'. We have the comparison of Spiders spinning webs and Beavers building dams as to how a person with autism or another neurodiverse condition can adapt to their environment. For example persons with autism are good with computers so they can move to the silicon valley and get an IT job. Armstrong claims that the prevalence of autism is greater in the silicon valley then in the general population. However we see that data from the CDDS contradict this notion. Of the 21 regional centers serving the CDDS in California we see that the San Andreas regional center ranked 9th out of 21 in the growth of autism prevalence, falling far behind the West Los Angeles regional center and the Lanterman regional center in central Los Angeles. Since the growth in the administrative prevalence of autism in the regional centers parallels the growth of the IT industry, these data could be considered relevant.
He steals Temple Grandin's thunder by listing jobs that are suitable for persons with various brain differences but neglecting to cite a single example of anyone with these conditions who was successfully employed in these occupations. This is in spite of the fact that Armstrong lists a 6% employment rate among autistics though I am not sure where he obtains this figure. This contradicts the 25% figure given by Joseph of the natural variation blog who also does not seem to know where he obtained his figure when questioned about it.
Amanda Baggs is also mentioned in the book Her "In my Language" video is extolled and she is compared to a professional percussionist. Computers and the internet are given as examples of successful niche construction on Amanda's part and Amanda is quoted as boasting that her caretakers would not be able to do what she does on the internet. However, Amanda's other video where she shows how much trouble she has with boiling water is not mentioned.
Armstrong states that for some reason that is not apparent to this blogger that Amanda's situation overturns tacit assumptions about autism. Interestingly, Armstrong neglects to discuss that Amanda up until she was a teenager had normal speech, went to a college for gifted children at age 14, had no behavior manifestations that would suggest anything remotely similar to autism as verified by many of her classmates and acquaintances. Apparently by a strange coincidence during a time when Amanda was ingesting in nearly daily doses of LSD for a lengthy period she had some sort of break and thought she was an elf and was diagnosed as schizophrenic rather than autistic. Then apparently was mysteriously diagnosed as autistic well in her 20s.
The studies showing that autistics have superior scores in certain tests such as embedded figures, block design, perfect pitch, etc. are also discussed. Armstrong implies that these studies refer to all autistic people and not necessarily a limited research pool whom would be considered high functioning. Also one wonders what sort of job or life skill or ability to adjust to the world high scores on these tests are correlated with. I score in the retarded range on block design so this would not apply to me. He gives savant musician Leslie Lemke, artist Stephen Wiltshire and Daniel Tammet's accomplishments as proof of autistic superiority, implying that just a few handful of people-these examples can be applied to many thousands if not more than a million worldwide.
He gives examples of how well suited an autistic person would be able to tell edible berries from a predator's eyes in a primitive society and how much rather he would be with someone constructing a spear or making a fire regardless of their social deficiencies. He does discount the possibility that motivational impairments might prevent these so-called systematizers as Baron-Cohen calls them from applying their skills. Of course exception to rule Temple Grandin is listed as an example of this. No matter that most persons on the spectrum are not like that and are probably not too employable.
Armstrong then gives examples of the studies that two members of Laurent Mottron's research team, Michelle Dawson and Isabelle Soulieres showing how autistics could be lifted out of the intellectually impaired classrooms based on the published studies of these two exemplary researchers. He cites Dawson's study where autistics scored much higher on Raven's matrices than the Wechsler and Souleries' study where autistics are able to do Raven's matrices 40% faster than non-autistic controls.
He neglects to mention the methodologic problems of these two studies Dawson excluded autistics with known genetic conditions which would probably mean at least 10% of all autistics. If this percentage were applied to autistics with intellectual disabilities, the percentage would likely be even higher. There was a 12:1 male/female ratio in her study as opposed to 4:1 in the general population of autistics. At least some of these autistics were high functioning with nearly normal intelligence, even though there were some low functioning persons who scored much or at least substantially higher on the Raven's than on the Wechsler.
Though Dawson et. al. implied that their control group in the study was neurotypical, this was hardly the case. Rather than being representative of the general population of non-autistics they were a self-selected sample recruited from a newspaper ad whose average score on the Wechsler was 75th percentile, sorry but an average of 75th percentile of any population is certainly not typical. It presented a comparison of one atypical group to another atypical group.
To date, Dawson's work has not been replicated. In fact there are two at least partial nonreplications, one by Sven Boelte. Though some persons in Boelte's study did have a higher RPM score than Wechsler the effect was much less pronounced than in Dawson's study and was limited to lower functioning autistics with IQs less than 85. There was no effect on the higher functioning group. Kim Boddner has also done an IMFAR presentation showing that there is no difference on Wechsler's vs. Raven's in relatively high functioning autistics whose IQs are 85 or higher.
In spite of this Souleries, in an act of statistical legerdemain, based her study on the fact that this effect existed in high functioning autistics in spite of the two nonreplications. One reason, of course that Souleries did not use lower functioning persons in her research was likely due to noncompliance issues which would cause artifacts on an MRI scan, which was part of her study. She stated the superiority of Raven's versus Wechsler in higher IQ autistics as fact rather than a statement of contention. Her use of speed in the Raven's was also nonstandard as it is not a timed test.
Though the book clearly has a pro neurodiversity perspective, one wonders would at least one of the two blurbees, namely Ne'eman be happy with this book. The answer is no, because Armstrong does concede that autism, schizophrenia and other conditions do present grave problems for the individuals affected. We have seen from the meticulous documentation on autism's gadfly that Ne'eman most likely does not even believe that autism is a disability.
Armstrong also seems to deviate from some of the other tenets of the ND movement, at least as it applies to autism, though not necessarily some of the other neurodiverse conditions such as schizophrenia or affective "differences". He uses Howard Gardner's "Frames of Mind" book to show how different people can have different intelligences. He speculates that dysfunctions in the limbic system but other areas being intact in an autistic could lead to them having superior math skills yet significant social deficits. The ND belief is that autism is not limited to just some parts of the brain but that the autistic brain is hardwired from birth and that to cure a person of autism would be killing them as a human being. In fact neurodiversity hatemonger, the late "Alyric" once called me Jonathan I want to destroy myself Mitchell because of my longing for a cure for this horrible affliction.
He also writes some interesting things about special education, stuff about kids being bullied, having low self-esteem due to having to be in special education and the stories of physical abuse of children in special education schools. I experienced all these first-hand growing up as a special education student throughout the 1960s, so indeed this did resonate with me.
He discusses how special education should be changed so that the emphasis is on strengths rather than on deficits but is rather vague on how this could be accomplished. For example he just goes as far as telling how it would be good to tell a student how helpful they are in cleaning up a lunch room or how well they sing in a musical performance. He also advocates a "neurodiverse classroom" where instead of one teacher teaching an entire class there would be multiple teachers and aides and specialized accommodations involving specialized personnel to help with mobility or signing issues. Armstrong really does neglect to tell how the tab would be picked up for all these goodies given the fact that local school districts have such difficulty in providing funding for special education as it is and the nearly complete neglect of the federal government doing so, since contrary to popular belief the IDEA is an unfunded mandate with no legal obligation to provide funding by the federal government.
Ironically Armstrong talks about combating "ableism" and implies that a large part of the problem for persons with neurologic impairments in the workplace is this prejudice. Though I don't deny prejudice does exist I had a disability that impaired my performance in the workplace, though I did work sporadically with marginal success. Though my intelligence was more than intact I could not be in a regular education classroom as a young child due to behavioral issues.
I have to wonder if Armstrong ever reads any of the neurodiversity blogs or the comments section of the blogs. I don't see how anyone who does so cannot come to an alternative conclusion that the neurodiversity crowd are among the greatest "ableists" of all. From the condescending ridicule I received from Alyric regarding my special education experiences, from the mocking of my mediocre college performance by hatemonger David Andrews who was the one who encouraged Baron-Cohen to write that despicable essay on how high functioning autism should not be considered a disability and Andrews trying to show how superior he was to me because I could not do as well academically as he did or get a masters degree and hang out my shingle and practice, even in a very foreign country like Finland as he has done. Don't forget the cheap shots at my celibacy made by "Socrates" who in spite of being unemployed and homeless seems to imply that he is God's gift to women. Last but not least is the vicious hate I receive routinely from Clay Adams who was able to serve in the Navy, be gainfully employed in various contracting jobs, often being the lead man on crews and was able to get married and support two children. Bigotry and ableism are certainly pervasive on many of the hub blogs past and present.
The bottom line is, whatever assets persons with autism allegedly have, the social deficits produce either a zero sum or negative gain in functioning. I think this is proven by the relatively high functioning persons who are part of the autism hub and various ND cliques. This is something for Armstrong to think about.
Tuesday, June 8, 2010
Wednesday, June 2, 2010
emails to elected officials
I have written the following to my congressman, senators and president Obama. I realize this is probably about as effective as writing a letter to Santa Claus but I have done it anyhow. I am going to share the contents with the readers of autism's gadfly:
Mr. Congressman: I am an individual on the autism spectrum now in my mid 50s who longs for a cure for autism. I realize that this is not realistic in my lifetime. I am celibate. I have not worked in over 3 years and I have been unsuccessfully trying to get on disability for nearly 3 years now. I constantly talk loudly and make funny movements which draws attention to myself. I have very poor fine motor coordination and can hardly handwrite. I have various phobias. As a very young child I was almost completely nonverbal. I have been constantly fired from jobs (probably about 20 now) and had to give up working. i am very frustrated by this disability.
The reason I write to you is that I am very concerned about various autism policies that are now put in place by the federal government.
I am concerned about the creation of the combating autism act and the subsequent creation of the interagency autism coordinating committee. Though the law has stipulated that there must be at least one autistic member, there are currently two members, Stephen Shore and Ari Ne'eman. Both of these individuals have expressed opposition to curing autism in spite of the spirit of the law. Both of these persons are barely affected by their autism if at all. In fact Ari Ne'eman has stated that curing autism would be morally reprehensible. He has advocated a moratorium on all genetic research. Genetics may be in fact the 'ace in the hole' for finding future treatments or at least ensuring that future generations of children wll not be affected as I have. I do not believe either of these individuals should serve in the government in any capacity on autism related matters. I urge you to introduce legislation expelling these individuals from the IACC or introducing legislation to abolish the IACC and/or voting against reauthorization of the combating autism act when that comes up.
John Elder Robison, is another individual who has expressed opposition for curing certain autism disorders other than his own, yet he can be a best selling author, get a $100,000/year engineering job and get married twice. These are things beyond my capacity. He is allowed to review federally funded autism research apparently only because of his incredible celebrity. I do not believe persons who express opposition to a cure such as Robison should be reviewing grants for federally funded research. The same goes for Stephen Shore who does this as well as being a public member of the IACC. I hope these celebrity review of research by those opposed to a cure should stop.
I also would like to comment on the federal goverment's funding of autism researcher Morton Anne Gernsbacher. This is a woman who has publically opposed a cure and who in fact has stated that autism is a harmless condition. I was hoping you could introduce legislation to terminate her funding from the army, air force, NIH and lastly the CDC. It is interesting that she receives funding from the CDC yet does not believe that autism is a disease.
Thanks for your consideration in this matter.
Jon Mitchell
Mr. Congressman: I am an individual on the autism spectrum now in my mid 50s who longs for a cure for autism. I realize that this is not realistic in my lifetime. I am celibate. I have not worked in over 3 years and I have been unsuccessfully trying to get on disability for nearly 3 years now. I constantly talk loudly and make funny movements which draws attention to myself. I have very poor fine motor coordination and can hardly handwrite. I have various phobias. As a very young child I was almost completely nonverbal. I have been constantly fired from jobs (probably about 20 now) and had to give up working. i am very frustrated by this disability.
The reason I write to you is that I am very concerned about various autism policies that are now put in place by the federal government.
I am concerned about the creation of the combating autism act and the subsequent creation of the interagency autism coordinating committee. Though the law has stipulated that there must be at least one autistic member, there are currently two members, Stephen Shore and Ari Ne'eman. Both of these individuals have expressed opposition to curing autism in spite of the spirit of the law. Both of these persons are barely affected by their autism if at all. In fact Ari Ne'eman has stated that curing autism would be morally reprehensible. He has advocated a moratorium on all genetic research. Genetics may be in fact the 'ace in the hole' for finding future treatments or at least ensuring that future generations of children wll not be affected as I have. I do not believe either of these individuals should serve in the government in any capacity on autism related matters. I urge you to introduce legislation expelling these individuals from the IACC or introducing legislation to abolish the IACC and/or voting against reauthorization of the combating autism act when that comes up.
John Elder Robison, is another individual who has expressed opposition for curing certain autism disorders other than his own, yet he can be a best selling author, get a $100,000/year engineering job and get married twice. These are things beyond my capacity. He is allowed to review federally funded autism research apparently only because of his incredible celebrity. I do not believe persons who express opposition to a cure such as Robison should be reviewing grants for federally funded research. The same goes for Stephen Shore who does this as well as being a public member of the IACC. I hope these celebrity review of research by those opposed to a cure should stop.
I also would like to comment on the federal goverment's funding of autism researcher Morton Anne Gernsbacher. This is a woman who has publically opposed a cure and who in fact has stated that autism is a harmless condition. I was hoping you could introduce legislation to terminate her funding from the army, air force, NIH and lastly the CDC. It is interesting that she receives funding from the CDC yet does not believe that autism is a disease.
Thanks for your consideration in this matter.
Jon Mitchell
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