I see that one of my favorite scientific reviewers of both public sector research grant proposals for autism research and proposals by people seeking funding from autism speaks is at it again. John Elder Robison is curious as to why the ratio of autistic males to autistic females is so high.
As regular readers of my blog know,i discussed this in a recent blog post.
Robison in the past has made questionable statements about causes of increases in autism prevalence, for example suggesting that a good portion of the increase could come from the rare condition chronic disintegrative disorder. He has also suggested studying geek success as a legitimate scientific endeavor to help ameliorate the problems of autistic persons.
When I find it inconceivable that Mr. R can't top himself in his brilliant theories and suggestions to help understand and help those with autism, he never ceases to amaze me with what has to be his most astute observation ever. On speculating as to why the ratio of autistic males to autistic females is so high Mr. Robison writes:
One explanation is that some parents have a son with autism and stop having children. So the girls that might even the male/female ratio are never born. I think that explanation may be true today, but what about the ages before modern birth control?
That's an interesting idea, however, I do have one question. Previously in his post Robison conceded that there is a 50/50 chance of a baby being born either a boy or a girl. So I wonder why parents could not have a daughter as their first born with autism and then stop having other children after their daughter is born? In that case the ratio of autistic females to males would be 4:1 or higher.
If Robison's theory were to have any credibility it would mean that at least four times as many boys are born than girls. If that were true there would be plenty of typical males who would have trouble finding mates the way autistics do and not as many babies would be born and over population would not be such a problem. Yet he contradicts this notion previously in the post by saying just as many males are born as females.
I would be very interested in hearing Robison's explanation as to why this theory would only apply to first born sons rather than first born daughters, must be a doozy.
I can't think of how well I'll sleep at night, as a former taxpayer, knowing that someone who is so brilliant is reviewing government research grants to decide what sort of autism research is funded at my expense.
The persons who donated money to autism speaks with autistic children who will never make a six figure income, get married or write a best selling memoir will certainly be secure in knowing that an individual that thinks things through so clearly is working so hard to see the right research is funded by this stellar organization.
The rumor mill has it that now that the combating autism act will be renewed after the formality of Obama signing the bill into law that Mr. Robison will be the third public member on the spectrum, alongside Stephen Shore and Ari Ne'eman on the IACC. I wonder what other brilliant suggestions he will make in this capacity. I'm wondering if he can possibly top this one, that would seem quite a formidable task.
He concludes the post by saying:
It would be very interesting to see a study that addressed this question. Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .
Stranger things have happened.
Yes, I do agree with Robison here. Stranger things have happened. Like a certain high school dropout I know getting to review scientific grant proposals along with all of these M.D. and Ph.D. scientists.
Addendum: I see that autism speaks has posted Mr. R's post on their blog they have certainly once again shown their credibility as a fund raising organization.
Wednesday, September 28, 2011
Friday, September 23, 2011
SSDI appeal turned down
I got a letter from the social security office today notifying me that my appeal for SSDI has been turned down. I have 60 days to file in federal district court to contest the decision. I am not sure if it is worth doing or asking my lawyer to do it. It means waiting another three years for a court date on top of the more than four years i have been pursuing this matter now. I have written about it previously.
I wonder if the government believes that I'm a welfare bum who won't take responsibility for my life because of the writings of one neurodiversity activist who is also an ASAN supporter .
I know that in spite of the Obama administration's support for ASAN by appointing Ari Ne'eman to two different government posts, that these people are wrong about me. I tried like hell to work for nearly three decades and went through utter hell the whole time. I never groveled at the feet of any bureaucrat. In spite of what this individual may have convinced the government, autism is truly a disease and the reason most autistic people can't work is because they are physically impaired.
I know I am not the only one and many others have been turned down for SSDI or SSI. It is a shame that the government expects us to fend for ourselves and they agree with the mindset of a few deranged neurodiversity activists.
I may or may not keep readers posted of any further developments.
I wonder if the government believes that I'm a welfare bum who won't take responsibility for my life because of the writings of one neurodiversity activist who is also an ASAN supporter .
I know that in spite of the Obama administration's support for ASAN by appointing Ari Ne'eman to two different government posts, that these people are wrong about me. I tried like hell to work for nearly three decades and went through utter hell the whole time. I never groveled at the feet of any bureaucrat. In spite of what this individual may have convinced the government, autism is truly a disease and the reason most autistic people can't work is because they are physically impaired.
I know I am not the only one and many others have been turned down for SSDI or SSI. It is a shame that the government expects us to fend for ourselves and they agree with the mindset of a few deranged neurodiversity activists.
I may or may not keep readers posted of any further developments.
Tuesday, September 20, 2011
Combating autism act reauthorization: Countdown to Armageddon
In another ten days, if the combating autism reauthorization act does not pass, the law will sunset and will no longer exist. This is it, folks, countdown to Armageddon.
If this act does not pass, the IACC will cease to exist and it's six public members won't have a platform to stand on. Lynn Redwood will no longer be able to pontificate at taxpayer expense that Mercury is the cause of autism and thimerosal is the most likely culprit. Never mind that study after study has refuted what she said. For another ten days, the government will still pay for her pontification as well as paying for the IOM's study and conclusions that there is not a snowball's chance in hell that mercury and thimerosal caused an autism epidemic. The state of California paid for Schecter's and Grether's study, showing no relationship between thimerosal and autism after this substance was phased out of vaccines. They could have read gadfly's controversial piece on the subject and saved the taxpayers of the u.s.a. and California some hard earned dough.
The law stated that one person on the spectrum must serve as a public member. Though the law stated that the objective was to ultimately cure autism, we have two anti-cure autistics, Stephen Shore and Ari Ne'eman who are barely affected by their autism, if at all. To date, no pro cure autistic has been appointed a public member of the IACC. In fact Ari Ne'eman is opposed to this act, yet serves on the governmental board this law authorized, what irony! Only ten more days to Armageddon. Ne'eman won't be able to recommend that autistics can be employed if only social pleasantry is eliminated as a criteria for hiring and evaluating people's job performances. In fact he might have more time on his hands and perhaps he can get his first paid job. For another ten days the government will also have to finance his lecturing an economist on the evils of committing eugenics by daring to come up with a cost analysis study showing the expense of autism to society, then we have the countdown to Armageddon. Ari will be able to publicly laugh, declaring victory, but privately crying boo hoo, that his power as a public member of the IACC that he so covets has been taken away from him.
It's coming down to the wire, the tension is building. Only ten more days, will congress pass this law or won't it? Will Barack Obama sign it? Perhaps he will ponder a veto once it comes across his desk. After all, how can Mr. Obama sign such legislation stating that he wants to combat autism in good conscience. After all, his administration has appointed an individual to two government posts relating to autism who has made it clear that he believes curing autism would be morally reprehensible. Of course, there is the alternative way of combating autism. Some of us can be strangled to death and turned into cat food, or alternatively we can be taken out, lined up against the wall and be shot. after all, this was a policy recommendation of one of mr. Ne'eman's most ardent supporters since Mr. Ne'eman has not repudiated the statement or this individual, Gadfly wonders if he feels this way or if Mr. Obama who appointed him to these posts does too. After all, in this same post, this individual stated that those of us who have autism and want a cure are only standing in the way of noble self-advocates because we are a bunch of welfare bums who won't look for work or take responsibility for our lives, so taking this recommendation would save the taxpayers money. it would take a two-thirds vote of both houses of congress to override an Obama veto in the event that it happened. Would this happen? If not, we have ten days countdown to Armageddon.
Whether or not this law is reauthorized, the status quo won't be changed in other aspects. John Robison, a high school dropout with no training or knowledge in autism and science, will still be able to review government grant proposals at taxpayer expense. Now the government has an autistic person who states he is a stakeholder though tacitly admitting he has no disability of any kind. Thanks to Robison's federal appointment, or whatever it is, we are no longer disenfranchised. Hallelujah! praise the lord!
Morton Gernsbacher, a woman who does not believe autism is a disease, will still get funding from the Center for Disease Control to carry out her research. She will be able to get this funding even though she trivializes a serious disability by claiming Richard Borcherds and Vernon Smith are autistic. I have dealt with the problems of Gernsbacher's argument elsewhere. My tax dollars will still go to this woman who writes essays with so many factual errors, rather than giving it to me in the form of disability that i have been trying to get for more than four years so i can buy a new car to replace my 16 year old Honda accord.
Well folks, ten more days until the countdown to possible Armageddon if this law is not renewed.
Addendum: Word is out from the autism society of america that the house has passed the combating autism act. I am not sure, but I think it has to be passed by the senate also, then signed into law by Obama in the next 9-10 days.
If this act does not pass, the IACC will cease to exist and it's six public members won't have a platform to stand on. Lynn Redwood will no longer be able to pontificate at taxpayer expense that Mercury is the cause of autism and thimerosal is the most likely culprit. Never mind that study after study has refuted what she said. For another ten days, the government will still pay for her pontification as well as paying for the IOM's study and conclusions that there is not a snowball's chance in hell that mercury and thimerosal caused an autism epidemic. The state of California paid for Schecter's and Grether's study, showing no relationship between thimerosal and autism after this substance was phased out of vaccines. They could have read gadfly's controversial piece on the subject and saved the taxpayers of the u.s.a. and California some hard earned dough.
The law stated that one person on the spectrum must serve as a public member. Though the law stated that the objective was to ultimately cure autism, we have two anti-cure autistics, Stephen Shore and Ari Ne'eman who are barely affected by their autism, if at all. To date, no pro cure autistic has been appointed a public member of the IACC. In fact Ari Ne'eman is opposed to this act, yet serves on the governmental board this law authorized, what irony! Only ten more days to Armageddon. Ne'eman won't be able to recommend that autistics can be employed if only social pleasantry is eliminated as a criteria for hiring and evaluating people's job performances. In fact he might have more time on his hands and perhaps he can get his first paid job. For another ten days the government will also have to finance his lecturing an economist on the evils of committing eugenics by daring to come up with a cost analysis study showing the expense of autism to society, then we have the countdown to Armageddon. Ari will be able to publicly laugh, declaring victory, but privately crying boo hoo, that his power as a public member of the IACC that he so covets has been taken away from him.
It's coming down to the wire, the tension is building. Only ten more days, will congress pass this law or won't it? Will Barack Obama sign it? Perhaps he will ponder a veto once it comes across his desk. After all, how can Mr. Obama sign such legislation stating that he wants to combat autism in good conscience. After all, his administration has appointed an individual to two government posts relating to autism who has made it clear that he believes curing autism would be morally reprehensible. Of course, there is the alternative way of combating autism. Some of us can be strangled to death and turned into cat food, or alternatively we can be taken out, lined up against the wall and be shot. after all, this was a policy recommendation of one of mr. Ne'eman's most ardent supporters since Mr. Ne'eman has not repudiated the statement or this individual, Gadfly wonders if he feels this way or if Mr. Obama who appointed him to these posts does too. After all, in this same post, this individual stated that those of us who have autism and want a cure are only standing in the way of noble self-advocates because we are a bunch of welfare bums who won't look for work or take responsibility for our lives, so taking this recommendation would save the taxpayers money. it would take a two-thirds vote of both houses of congress to override an Obama veto in the event that it happened. Would this happen? If not, we have ten days countdown to Armageddon.
Whether or not this law is reauthorized, the status quo won't be changed in other aspects. John Robison, a high school dropout with no training or knowledge in autism and science, will still be able to review government grant proposals at taxpayer expense. Now the government has an autistic person who states he is a stakeholder though tacitly admitting he has no disability of any kind. Thanks to Robison's federal appointment, or whatever it is, we are no longer disenfranchised. Hallelujah! praise the lord!
Morton Gernsbacher, a woman who does not believe autism is a disease, will still get funding from the Center for Disease Control to carry out her research. She will be able to get this funding even though she trivializes a serious disability by claiming Richard Borcherds and Vernon Smith are autistic. I have dealt with the problems of Gernsbacher's argument elsewhere. My tax dollars will still go to this woman who writes essays with so many factual errors, rather than giving it to me in the form of disability that i have been trying to get for more than four years so i can buy a new car to replace my 16 year old Honda accord.
Well folks, ten more days until the countdown to possible Armageddon if this law is not renewed.
Addendum: Word is out from the autism society of america that the house has passed the combating autism act. I am not sure, but I think it has to be passed by the senate also, then signed into law by Obama in the next 9-10 days.
Saturday, September 3, 2011
having an interest in science but not the ability
In the better late than never department so typical of your humble gadfly, I’ve decided to comment on something John Robison said in his interview with Steve Silberman which caught my eye.
John Robison has been chosen as a member of the scientific advisory board of autism speaks as well as a reviewer for government research grants. When Silberman asked him if others with autism should be included in these roles Robison responded:
Yes. I have argued for having more autistic people on the boards, but it’s not obvious to me who those people would be. I don’t have a lot of personal knowledge of autistic people with an interest in science. Most of the people in the autism community who are critical of the policies of these various groups are not people with any real interest in science, or at least they don’t express the interest in their writing that I can see. Without an interest in science, they don’t have an obvious fit with the boards.
In the comments section, Michelle Dawson seemed to take umbrage at Robison’s remarks. She is an individual with autism who has published journal articles and has obviously taken a great interest in science of autism. In fact she has taken such a strong interest in science, we have seen that she is not above accepting charity from persons who she says "make her sick" and from an organization she claims ideally wishes a short future for autistic persons in order to carry out her scientific endeavors.
I was struck by this because I think of my own interest in the science of autism.
I have on occasion written posts dealing with scientific issues and I know Robison reads this blog. However, I have not written on these issues frequently. One of the reasons is that though I have an interest in scientific issues in autism, my disability has impaired me from pursuing them as vigorously as I could and obtaining the needed expertise to write decent blog posts on the subject.
I did not realize that I had an organic impairment in my brain until adolescence when the individual who was my psychologist at the time discussed these issues with me.
Not long after this, while in community college in the mid 1970s, I took an interest in this and I took a course in physiological psychology as well. After this, I tried to read whatever I could about the brain and later about autism. I read some more physiological psychology textbooks and purchased A.R. Luria’s The working brain. I wanted to major in psychobiology after I transferred to UCLA but had to settle for an undergraduate psychology degree due to getting C minuses in a couple of science courses. There was also the question of whether doing stereotactic surgery on animals would be too difficult for me. I had no idea at the time that MRI scans would be invented. I was crushed when one of the psychiatrists who evaluated me for autism noted that at age 21 I had essentially never had a job (or at least no job where taxes and social security were withhold). He took it upon himself to give me some vocational counseling. He asked me what I wanted to be. When I told him I wanted to be a brain researcher he stated, "You’re going to have to settle for something less than what you want to be." He suggested "manual labor" as an alternative career whatever that means. I never dreamed the irony that would take place more than three decades later when I would read Morton Gernsbacher’s extremely offensive piece with the multiple factual errors which I wrote about previously where she talks about autistics participating as researchers and the cavalier attitude she takes towards individuals such as myself who are too impaired to be scientists.
After college I continued to try to read about the brain and science in order to figure out what the defect was that had made my life so difficult. I read articles in various journals, such as the autopsy studies done by Williams et. al. that found problems in the cerebella of autistics, as well as postmortem reports done by Edward Ritvo and Margaret Bauman and Tom Kemper. It was very hard for me to concentrate and learn much more. My constant desire for twiddling (self-stimulation) coupled by my executive functioning problems made this a formidable task and I was unable to achieve the expertise in science and autism which I coveted.
A few years later, I read the study that Eric Courchesne had published in the New England journal of medicine on the smaller size of lobules VI-VII of the cerebellar vermis. I wanted to be his research subject. I got my wish and talked shop with him. I asked him a variety of questions and he seemed somewhat impressed with my limited knowledge. I wrote about this elsewhere as well.
All of this had been consummated by the spring of 1989, still some years before either Michelle Dawson or John Robison would take any interest in autism or receive their respective diagnoses.
In addition to having my autism and the constant desire to twiddle (self-stimulate) be disorganized and have a hard time applying myself, I was sidetracked in other ways as well. There were various times that I worked 40 hours or more a week. I also took an interest in learning computer programming. I became interested in fiction reading and writing and wanted to be a novelist. I succeeded in writing two (albeit non-publishable) novels. This, exacerbated by my disability, made it difficult to pursue my interest in science that Robison does not seem to think I have. He apparently has never read my essay which I linked to above. I also took an interest in more leisurely pursuits including poker, horse race wagering, tennis and skiing. I wanted to have a happy life with good times in spite of my disability.
Other things took place as well, the amount of research done on autism skyrocketed. It was hard to keep up. An ugly cult of vicious hatemongers called neurodiversity came to the fore. These despicable people appear to believe that persons with autism are better off being crippled and sick than being a healthy individual. I felt that I had to do research and work in order to outwit these people. The results are my article urging people to reject this philosophy as well as multiple posts on this blog. I will let readers judge how much I have succeeded in opposing these people.
Over the years, I have never forgotten my interest in the science of autism and the brain that could have the potential to find out what causes these problems and how they could be mitigated or cured. I hope to one day read more books and study more journal articles, but in sum, my disability and other things in my life have made that pursuit difficult if not impossible. Even though I lack abilities because of my disability, I still have the interest.
Does Robison believe I would be a poor fit on a scientific advisory board? I am not sure of the answer to that.
Is Robison himself a good fit? He is a high school dropout serving on the autism speaks advisory board where everyone else has an M.D. or Ph.D. He has made questionable statements on what has caused a rise in prevalence. He has suggested geek success as a legitimate scientific endeavor, which I took him to task on. He has shown ignorance rather than erudition in these statements.
The reason Robison gives for certain autistics not being a good fit is their dearth of writing on scientific subjects. What of Robison himself? How much has he written about the science of autism anywhere? In his books or in his blog posts?
As far as I can discern, with the exception of writing about his experiences in some TMS studies that Lindsay Oberman was doing and the post where he suggested geek success and one other thing as scientific endeavors, Robison has never written any commentary on the science of autism, how science could be advanced to help autistic people or suggestions how research could be pursued or funded. It seemed he was more interested in making money for himself and helping out his son through autism speaks’ largess than he was in using that money to help others much less fortunate than himself or ways in which science could help mitigate the hardships of autism. If someone can point me to where Robison has contributed to or written anything about the science of autism other than the aforementioned examples, I would be gratified if they would comment on this blog post or send me an email.
Perhaps most germane of all is the question of whether the person who wants to influence the direction of research is a legitimate stakeholder of any sort. Is he a person who himself is afflicted with autism or is he the parent of one? Though Robison has a son who he says is on the spectrum, it would appear his son is minimally affected if at all. On his own autism another statement he makes in the interview particularly stands out:
Even though I’m not a disabled person by any means today, I would say that the social challenge is a characteristic of disability that I have not been able to overcome. I’ve only been able to circumvent it a bit and do my best with it. That’s OK, but if you ask me what the hardest thing for me is about autism, that’s absolutely it.
We seem to have a tacit admission on Robison’s part that he has no disability whatsoever. Claiming he has social challenges that he was able to circumvent a bit seems a stretch for a man able to marry now three times, have a son, start all those successful businesses and write a best selling memoir. If Robison is not disabled by his ASD then why does he merit a diagnosis at all, let alone presenting himself as a stakeholder at government expense as well as the expense to those who donated time and money to autism speaks?
As far as being a good fit for scientific advisory boards it would seem that Robison is the squarest of pegs trying to be placed into the roundest holes by any standards.
I hope that perhaps someday, if I continue to blog, that I can write more frequently on scientific issues in autism as well as a higher quality of posts that I have written in the past. However, my disability, (but not lack of interest), may preclude me from doing so.
Why can’t we have pro-cure autistics who are actually affected by this disability as stakeholders in both governmental funding (given that the government has declared curation and prevention as public policy decisions vis-a-vis the combating autism act) as well as organizations such as autism speaks who claim that their goal is the curation and prevention of autism?
Would I be a better fit on a scientific advisory board than Robison? I don’t know the answer to that question. However, I don’t think I would be any worse and don’t see how I could be.
John Robison has been chosen as a member of the scientific advisory board of autism speaks as well as a reviewer for government research grants. When Silberman asked him if others with autism should be included in these roles Robison responded:
Yes. I have argued for having more autistic people on the boards, but it’s not obvious to me who those people would be. I don’t have a lot of personal knowledge of autistic people with an interest in science. Most of the people in the autism community who are critical of the policies of these various groups are not people with any real interest in science, or at least they don’t express the interest in their writing that I can see. Without an interest in science, they don’t have an obvious fit with the boards.
In the comments section, Michelle Dawson seemed to take umbrage at Robison’s remarks. She is an individual with autism who has published journal articles and has obviously taken a great interest in science of autism. In fact she has taken such a strong interest in science, we have seen that she is not above accepting charity from persons who she says "make her sick" and from an organization she claims ideally wishes a short future for autistic persons in order to carry out her scientific endeavors.
I was struck by this because I think of my own interest in the science of autism.
I have on occasion written posts dealing with scientific issues and I know Robison reads this blog. However, I have not written on these issues frequently. One of the reasons is that though I have an interest in scientific issues in autism, my disability has impaired me from pursuing them as vigorously as I could and obtaining the needed expertise to write decent blog posts on the subject.
I did not realize that I had an organic impairment in my brain until adolescence when the individual who was my psychologist at the time discussed these issues with me.
Not long after this, while in community college in the mid 1970s, I took an interest in this and I took a course in physiological psychology as well. After this, I tried to read whatever I could about the brain and later about autism. I read some more physiological psychology textbooks and purchased A.R. Luria’s The working brain. I wanted to major in psychobiology after I transferred to UCLA but had to settle for an undergraduate psychology degree due to getting C minuses in a couple of science courses. There was also the question of whether doing stereotactic surgery on animals would be too difficult for me. I had no idea at the time that MRI scans would be invented. I was crushed when one of the psychiatrists who evaluated me for autism noted that at age 21 I had essentially never had a job (or at least no job where taxes and social security were withhold). He took it upon himself to give me some vocational counseling. He asked me what I wanted to be. When I told him I wanted to be a brain researcher he stated, "You’re going to have to settle for something less than what you want to be." He suggested "manual labor" as an alternative career whatever that means. I never dreamed the irony that would take place more than three decades later when I would read Morton Gernsbacher’s extremely offensive piece with the multiple factual errors which I wrote about previously where she talks about autistics participating as researchers and the cavalier attitude she takes towards individuals such as myself who are too impaired to be scientists.
After college I continued to try to read about the brain and science in order to figure out what the defect was that had made my life so difficult. I read articles in various journals, such as the autopsy studies done by Williams et. al. that found problems in the cerebella of autistics, as well as postmortem reports done by Edward Ritvo and Margaret Bauman and Tom Kemper. It was very hard for me to concentrate and learn much more. My constant desire for twiddling (self-stimulation) coupled by my executive functioning problems made this a formidable task and I was unable to achieve the expertise in science and autism which I coveted.
A few years later, I read the study that Eric Courchesne had published in the New England journal of medicine on the smaller size of lobules VI-VII of the cerebellar vermis. I wanted to be his research subject. I got my wish and talked shop with him. I asked him a variety of questions and he seemed somewhat impressed with my limited knowledge. I wrote about this elsewhere as well.
All of this had been consummated by the spring of 1989, still some years before either Michelle Dawson or John Robison would take any interest in autism or receive their respective diagnoses.
In addition to having my autism and the constant desire to twiddle (self-stimulate) be disorganized and have a hard time applying myself, I was sidetracked in other ways as well. There were various times that I worked 40 hours or more a week. I also took an interest in learning computer programming. I became interested in fiction reading and writing and wanted to be a novelist. I succeeded in writing two (albeit non-publishable) novels. This, exacerbated by my disability, made it difficult to pursue my interest in science that Robison does not seem to think I have. He apparently has never read my essay which I linked to above. I also took an interest in more leisurely pursuits including poker, horse race wagering, tennis and skiing. I wanted to have a happy life with good times in spite of my disability.
Other things took place as well, the amount of research done on autism skyrocketed. It was hard to keep up. An ugly cult of vicious hatemongers called neurodiversity came to the fore. These despicable people appear to believe that persons with autism are better off being crippled and sick than being a healthy individual. I felt that I had to do research and work in order to outwit these people. The results are my article urging people to reject this philosophy as well as multiple posts on this blog. I will let readers judge how much I have succeeded in opposing these people.
Over the years, I have never forgotten my interest in the science of autism and the brain that could have the potential to find out what causes these problems and how they could be mitigated or cured. I hope to one day read more books and study more journal articles, but in sum, my disability and other things in my life have made that pursuit difficult if not impossible. Even though I lack abilities because of my disability, I still have the interest.
Does Robison believe I would be a poor fit on a scientific advisory board? I am not sure of the answer to that.
Is Robison himself a good fit? He is a high school dropout serving on the autism speaks advisory board where everyone else has an M.D. or Ph.D. He has made questionable statements on what has caused a rise in prevalence. He has suggested geek success as a legitimate scientific endeavor, which I took him to task on. He has shown ignorance rather than erudition in these statements.
The reason Robison gives for certain autistics not being a good fit is their dearth of writing on scientific subjects. What of Robison himself? How much has he written about the science of autism anywhere? In his books or in his blog posts?
As far as I can discern, with the exception of writing about his experiences in some TMS studies that Lindsay Oberman was doing and the post where he suggested geek success and one other thing as scientific endeavors, Robison has never written any commentary on the science of autism, how science could be advanced to help autistic people or suggestions how research could be pursued or funded. It seemed he was more interested in making money for himself and helping out his son through autism speaks’ largess than he was in using that money to help others much less fortunate than himself or ways in which science could help mitigate the hardships of autism. If someone can point me to where Robison has contributed to or written anything about the science of autism other than the aforementioned examples, I would be gratified if they would comment on this blog post or send me an email.
Perhaps most germane of all is the question of whether the person who wants to influence the direction of research is a legitimate stakeholder of any sort. Is he a person who himself is afflicted with autism or is he the parent of one? Though Robison has a son who he says is on the spectrum, it would appear his son is minimally affected if at all. On his own autism another statement he makes in the interview particularly stands out:
Even though I’m not a disabled person by any means today, I would say that the social challenge is a characteristic of disability that I have not been able to overcome. I’ve only been able to circumvent it a bit and do my best with it. That’s OK, but if you ask me what the hardest thing for me is about autism, that’s absolutely it.
We seem to have a tacit admission on Robison’s part that he has no disability whatsoever. Claiming he has social challenges that he was able to circumvent a bit seems a stretch for a man able to marry now three times, have a son, start all those successful businesses and write a best selling memoir. If Robison is not disabled by his ASD then why does he merit a diagnosis at all, let alone presenting himself as a stakeholder at government expense as well as the expense to those who donated time and money to autism speaks?
As far as being a good fit for scientific advisory boards it would seem that Robison is the squarest of pegs trying to be placed into the roundest holes by any standards.
I hope that perhaps someday, if I continue to blog, that I can write more frequently on scientific issues in autism as well as a higher quality of posts that I have written in the past. However, my disability, (but not lack of interest), may preclude me from doing so.
Why can’t we have pro-cure autistics who are actually affected by this disability as stakeholders in both governmental funding (given that the government has declared curation and prevention as public policy decisions vis-a-vis the combating autism act) as well as organizations such as autism speaks who claim that their goal is the curation and prevention of autism?
Would I be a better fit on a scientific advisory board than Robison? I don’t know the answer to that question. However, I don’t think I would be any worse and don’t see how I could be.
Subscribe to:
Posts (Atom)
